Joshua Parker's
Journal
Sep 8, 2013 3:52 PM
I need to clarify a few things from my last entry.
1. Joshua is NOT off all medications. As of right now, he is
still getting 4 times the average adult dose of methadone
every day, plus gabapentin (pain med) and 4 other nonpain medications. He will go home on gabapentin & the
other 4 meds for sure. He might also need some
methadone if he can't be successfully weaned completely
off of it. We also anticipate adding at least one behavior
medication before he is discharged. So no, he is not off all
meds. He IS off all IV pain medications.
2. He is not "getting better". Everything he was doing
before he came to the hospital, he is still doing. He sleeps
13-14 hours before typically being woken before he's
ready to be up. He walks around a little bit. He plays on
his iPad. He watches movies/tv. If we were at home, he'd
also be playing on the computer, but there's no option for
that here. He eats & drinks small amounts because it
causes belly pain. His voice is still hoarse. He is not doing
anything significant now that he couldn't do before we
began weaning him off of narcotics. If I see him regaining
skills that he's lost over the past 1.5 years, THEN I will
report that he's showing improvement or "getting better".
Until that happens, however, I'm not saying that because
the fact is, he isn't getting better. He's at a plateau right
now, which is a place he's been at many times before in his
life. Time will tell if he's going to inch upward or slide
downhill some more and enough hasn't passed to make a
judgment call either way.
3. His behavior is VERY different than the Joshua of old.
The behavior is similar to what we were seeing at home
for 3 weeks BEFORE we came up here and BEFORE we
began weaning him from IV medications. This behavior is
most likely the result of being on high-dose opiates for so
long. It is most likely permanent. It is not going away
despite the fact that Joshua is on so much less opiate
medication now. It is not withdrawals (it was present
before we removed any medication AND it isn't getting
worse or better regardless of what we do with his meds). It
is not the opiate medication, itself, causing the behavior (if
that were the case, being off the meds would have
eliminated the behavior).
Yesterday, the nurses brought in arm restraints to put on
Joshua if he continues trying to hurt me or others. I have
scratches on my neck and chest, bruises on my legs from
being kicked and I listen to screaming, raging &/or verbal
insults hurled at anyone in his proximity for hours each
day. The nurses we had yesterday & today KNOW Joshua
from all of his previous hospitalizations (they're 2 of our
favorites, but Joshua doesn't even remember them) and
they are shocked and sad at what has happened to him.
One said that when Joshua is raging, he's like an adult
who has drank a fifth of tequila and is completely out of
control... that he's not "there" when he's having a fit and
he is completely unreachable. I agree with her assessment.
They are documenting things in detail and will specifically
tell the psychiatrist that redirection, distraction &
collaborative problem solving do NOT work with this little
boy and that he is unable to reason or be reasoned with. I
am thankful that someone who KNOWS Joshua sees what
I am seeing and is "going to bat" for him/me. I hope it will
make a difference with the psych. We have videotaped a
couple fits that have taken place with nurses in the room
to show the psychiatrist, so that he can watch what we are
talking about.
Even when Joshua is seemingly calm, it is ONLY because
everything in his environment is EXACTLY the way he
wants it to be. He doesn't want anyone to talk. He wants to
control what is on the television. He controls every
miniscule detail that he can and as long as everything goes
his way, he's calm. The moment things aren't the way he
wants/needs them to be, he starts getting riled up and,
depending on what is happening or if anyone is making
demands of him (such as needing to do a blood pressure
check), he will escalate very quickly to a full-fledged
meltdown. Again, I want to reiterate that this is NOT
merely "bratty 7 year old" behavior and it isn't "Oh, he's
tired of being in the hospital," behavior. He is out-ofcontrol and violent. He tries to hurt others and laughs
when he succeeds. This is NOT Joshua's personality. It is
a very drastic change from the personality he's had his
entire life and it's a recent change that had nothing to do
with our weaning him from narcotics. And I don't want to
offend anyone, but please don't offer me behavioral advice
right now. If I later decide I'm open to hearing suggestions
from people who aren't seeing Joshua firsthand, I will ask
for help. Right now, however, I am simply trying to clarify
things so that people will understand that things are NOT
all rosy and wonderful now just because we are weaning
Joshua off narcotics.
Because Joshua's behavior is so ugly, my children at home
are NOT eager to see their brother right now. They miss
JOSHUA and this little boy they are seeing on Skype
and/or listening to as he demands & yells in the
background while I'm trying to talk to them on the phone
is NOT the brother they miss. Seroquel was the behavior
medication that we began using soon after Joshua first
began displaying these horrible behaviors so the kids at
home did not have to endure his verbal abuse & violence.
Now that he's not on any behavior meds, Adam, Faith & I
are the ones seeing the full spectrum of how bad this
behavior is (along with the nurses). I am praying that the
doctors will help us get Joshua under control before they
discharge him. I don't want my children at home to be
hurt by their brother, either physically or emotionally,
and while redirection and distraction work for "minor"
things, Joshua is rarely thwarted as he perseverates on
something and that means an escalation of behavior when
he can't have things the way he wants. The nurses have
said that Joshua's behavior is typical of brain injured
children. I am waiting to see if a doctor agrees with that
assessment and, like I said, I am praying for help with
problem-solving this situation.
4. Joshua does still have headaches. His pain is not all
gone. At this time, I'd characterize his pain as similar to
spring, 2011 ~ he has positional headaches, meaning that
after he has been upright for awhile, his head hurts and
we have to get him to lay down. If, after 30 minutes or so,
his head pain is not significantly diminished, we give him
ibuprofen. That is working right now and that is great and
I am happy that he is comfortable for all but short periods
of time throughout the day, but it doesn't mean he's painfree because he's not. It also doesn't mean he won't
experience a progression of pain once again and
eventually need more medication again at some point. We
don't know if that will happen, but it could.
It is great that Joshua will go home without narcotic pain meds,
but managing his pain is only one piece of the puzzle and right
now, the behavior component is much more significant and
concerning. If we can get that hammered out and a workable
solution in place, I will feel a lot more hopeful about the future.
Sep 6, 2013 10:53 PM
This hospitalization has been challenging in many ways. I
have not intended to write in a way that leaves people
wondering what is going on, but if you think you're confused
by all of the changes going on as you read this journal entry,
please try to put yourself in my shoes and imagine how it
feels to be getting hit with constantly-changing thoughts and
ideas and theories from multiple doctors,each who has
varying knowledge of your child, and then maybe my
reluctance to write in detail here will be more
understandable. As every parent with a child who has a
chronic condition learns, there are always people reading
whatever is written with an eye for anything they can
interpret as a discrepancy and with a heart that is
judgmental & accusing. I try to write carefully and to do my
best to be clear so as to avoid as many negative responses as
possible. I aim to be honest & transparent so that no one can
accuse me of falsehood or manipulation. Most people who
read what I write recognize that. I realize there will always
be those who don't, however, and that is why I have not
wanted to write detailed updates about each step we have
taken during the past week that Joshua has been
hospitalized. Information that I am given has changed from
one doctor to the next. Plans have changed... procedures
scheduled & then canceled at the last minute. I didn't want
this site to be full of "We're doing this... oh wait, no we're
not," and "Dr. X said this is happening... oh wait, Dr. Y
contradicts Dr. X and now the prevailing thought is this."
It's confusing to me and I am the parent sitting at my child's
bedside hearing every word that is spoken by these doctors.
Trying to relay that information and then correct it each
time someone changed their mind over the past week was too
daunting and exhausting for me to do. That is why I've not
given full disclosure. I had a comment in the guestbook
yesterday that made me realize others who are reading here
are having trouble understanding what is going on (I
emailed that commenter to answer all of her questions and
deleted her comment so no one would think I was ignoring
her &/or wonder why I wasn't answering the questions), so I
will attempt to explain everything with the caveat that this is
what the theory/thought/plans are as of *right now* and
they may change in the days to come.
When we came to Portland 8 days ago, the doctors thought
Joshua was close to death and needed to have his narcotics
rotated to enable them to give smaller doses so that as he
required more to be kept as comfortable as possible, they
would have the ability to give more without causing adverse
effects. This is a common practice. Long-term use of
narcotics creates tolerance and a person needs more & more
of the medication to get the same effect. When they are on
too much narcotics for too long, they can develop a condition
called neurotoxicity.
Neurotoxicity is defined in Wikipedia this way:
"Neurotoxicity occurs when the exposure to natural or
artificial toxic substances, which are called neurotoxins,
alters the normal activity of the nervous system in such away
as to cause damage to nervous tissue. This can eventually
disrupt or even kill neurons, key cells that transmit and
process signals in the brain and other parts of the nervous
system. Neurotoxicity can result from exposure to substances
used in chemotherapy, radiation treatment, and drug
therapies (among other causes). Symptoms may appear
immediately after exposure or be delayed.They may include
limb weakness or numbness, loss of memory, vision, and/or
intellect, uncontrollable obsessive and/or compulsive
behaviors, delusions, headache, cognitive and behavioral
problems and sexual dysfunction.”
When we arrived in Portland, Joshua was experiencing
weakness in his legs, loss of memory & intellect (not
complete, of course, but noticeable), uncontrollable obsessive
behavior, headache, cognitive problems and behavioral
problems. At first, the doctors believed the weakness in his
legs was attributable to spina bifida and the other symptoms
were clinical signs of condition progression. There was also
concern that Joshua could be manifesting signs of
neurotoxicity caused by either the fentanyl or methadone he
was on. At the time of his admittance, Joshua was receiving
450mcg per hour of fentanyl and his bolus doses that he
could get as often as every 10 minutes for pain were 350mcg
each. As a comparison, the average dose given to a child
would be 1-2mcg per hour. His daily methadone doses were
90mg, 90mg & 95mg compared to the average adult dose of
10mg. Simply put, Joshua’s doses were astronomical. The
plan was to stop fentanyl & begin ketamine to reset his pain
receptors and dilaudid at roughly half the amount of
fentanyl he was getting and establish a new baseline at a
lower level for where Joshua needs to be regarding
medication.
The switchover went without complication. The PICU
doctors and Dr. G had fully anticipated problems, but not
one of those concerns occurred. Equally amazing was the
fact that Joshua did not need extra medication despite the
dilaudid dose being so much less than what he’d been getting
(Dr. G had thought he would). Because of that, the PICU
team wanted to continue weaning Joshua down to the lowest
dose that would still give him adequate pain coverage. It
made sense. If we got him down to a level of 1, he’d have
more time to advance in dosage (as he grew more tolerant of
the dilaudid) before he got back to a 10 and would need to
get his pain receptors reset again. So with everyone in
agreement, a plan was laid out to see “how low can we go”
and still keep Joshua comfortable.
Amazingly, Joshua was weaned off ketamine without any
problem. Then he came off dilaudid (yesterday was the day
it was completely turned off). So far, he’s had just 2
headaches and only 1 required some ibuprofen to be
managed adequately. Today began the wean off methadone.
Well, to be technical about it, while Joshua was in PICU,
they lowered his daily doses from 90/90/95mg to 60/60/75mg
and yesterday he went to 60mg for each dose, but the official
attempt to get him completely off this medication began
today. Tomorrow, he’ll go to 45mg for each dose and the
plan is to lower it by another 15mg per dose every 48 hours,
so if everything goes perfectly, Joshua will be off methadone
on September 15th. Dr. G doesn’t know if he’ll make it all
the way off, but again, the plan is to get him to the lowest
dose possible, so we’ll continue going down unless Joshua
starts having increased pain that isn’t easily managed with
over-the-counter meds. If he is successfully weaned off
methadone, they’ll take him off lorazepam and then the only
pain medication he would be on is gabapentin.
Everyone is stunned, amazed & incredulous that Joshua is
coming off the amount of opiates he’s been on without
problem. Dr. G never dreamed this could happen. Her nurse
told me yesterday that anything I write on CaringBridge
needed to be begin with the word “miracle”. Truly, no one
knows why Joshua suddenly needs so much less pain
medication now than before. I have been told repeatedly that
it defies explanation, though one PICU doctor suggested that
Joshua may not have needed the amount of medication he
was getting in the first place. She suggested that he was in a
negative feedback loop and that is what made everyone
think his pain was increasing when, in actuality, it may not
have been, and the end result would be neurotoxicity and the
discovery that he can be kept pain-free at much lower doses
of medication. A negative feedback loop would be where
Joshua said his head hurt and received medication and the
medication caused him to have a worse headache, which
would then have triggered us to give him more medication,
which would make the headache worse, ad nauseum. I'm not
sure if I agree completely with that PICU doctor's theory
only because for a very long time, Joshua's headaches were
eliminated by medication, not made worse, but at this point,
I'm confused enough to just toss up my hands and say,
"Okay. Whatever the reason, he's not needing as much pain
medication and we all agree that's a good thing. Let's move
on."
It is fantastic that Joshua is off IV pain meds and his oral
pain meds are being reduced, but as is so common in life,
something good often has a less-happy flip side. For Joshua,
the flip side is the lingering effects of neurotoxicity. Being on
the amount of opiates (narcotics) that he has for as long as
he has appears to have caused some damage. As he is coming
off the medications, we are not seeing improvement in his
behavior or cognition or obsessive/perseverating thoughts.
We *are* seeing all of those plus lapses in memory, rages,
opposition, intense tantrums over incredibly minor things,
lack of reasoning, and other things that now have doctors
(including the psychiatrist) leaning toward a diagnosis of
autism for Joshua.
How can a 7.5 year old develop autism or autistic-like
symptoms? Well, when you come from a family that has a
genetic predisposition to autism (4 of my bio kids are on the
spectrum), there is an increased sensitivity to neurotoxins.
Opiates are a neurotoxin, so I am guessing it stands to
reason that Joshua would be more likely to have autism
“triggered” by long-term narcotic use than the average
child. While he has not been given an official diagnosis, what
I keep getting told is the doctors’ theory that the narcotics
were “masking” Joshua’s autistic symptoms/behaviors and
as they have reduced the amount of opiates in his system, his
“true personality” is emerging and with it, the
behaviors/symptoms we are witnessing. I don’t see that as a
plausible theory since Joshua’s personality up until about 5
weeks ago was NOTHING like what it is now. I’m more
inclined to think the reality is that Joshua was being
overmedicated and that caused brain cell death
(neurotoxicity) and that damage leaves us with a child who
behaves in similar ways to an autistic child. Do I think
“autism” is the correct diagnosis for Joshua? At this point,
I’m not sure. I can see how many of his behaviors and
mannerisms could be attributed to autism, but there are
other things that don’t fit and are actually more like what
I’ve read a child with brain damage might exhibit. I think
that the MRI that was scheduled & then canceled at the last
minute could have been extremely helpful by showing
whether Joshua has brain damage. It also could have shown
us whether he’s got better cerebrospinal fluid flow around
his cerebellum as a result of his getting bigger in size &
getting more space inside his head, which could be an
explanation for how it is he’s still alive and why he isn’t
experiencing the same level of pain that he was 1.5 years ago
when he had his last surgeries. It is unfortunate that it was
deemed not worth the risk of sedating Joshua to do the MRI
because I believe that one test could have given us many
answers and stopped a lot of the speculating; however,since
the scan wasn’t done, speculation is all the doctors & I have.
So, that leads to the next question: what are they
speculating? Aside from the possibility of an autism
diagnosis, the doctors are greatly encouraged by how well
Joshua has tolerated the weaning of his pain medications.
They are hoping that the fact that he doesn’t need so much
medication also means his risk of dying any time soon is
greatly reduced. No one knows that for sure, but that is the
hypothesis that they are going off of now. That is the
paradigm shift I spoke of in an earlier journal entry. The
doctors are now thinking that because Joshua isn’t needing
so much pain medication, maybe the pressure against his
brain stem has lessened and as a result, the threat of him
dying soon is gone. Yes, they say, he still has his underlying
“life limiting” condition and yes, they say, they don’t know
with any certainty when he will die, BUT since he has been
able to come off IV meds & is being weaned off of
methadone, maybe that indicates that he’s got more space
now inside his head due to getting older & bigger and maybe
that means he will be here for many months, or even years,
to come. Everyone is VERY excited about this development
and wants me to be just as excited. While I am happy about
how well Joshua is coming off the opiates, I think very few
people up here understand why I have some reservations &
that actually surprises me.
Yes, I AM very happy that Joshua has come off all IV
medications and is getting lower doses of methadone with
the hope to get him off that medication entirely. That is
fantastic and exciting and all the other happy superlatives
you can think of. Sincerely. I am genuinely happy with this
development. But I am looking at (and listening to) the
fallout that almost 2 years of high dose narcotics have
wreaked on my little boy, who now has some significant
behavioral & developmental issues. I am trying to wrap my
mind around the realization that the doctors & I could have
inadvertently caused harm to Joshua by treating him in a
way that everyone believed was medically appropriate but in
actuality might not have been. I am thinking about how my
family and I will follow the doctors’ advice to “live as though
Joshua will be here for years to come while knowing he
could die at any time,” and what that will look like. I am
remembering all of the things I’ve been told regarding
Joshua’s prognosis and life expectancy and realizing that
every prediction has been wrong, which leads me to wonder
how I am supposed to have any measure of confidence in
what is being said now. It’s not like any tests have been
performed that enable the doctors to make their assertions
with any degree of accuracy (to be fair, I don’t know if any
such tests exist). And honestly, I think any medical
professional up here should be able to understand that when
I drove up here with Joshua 8 days ago, it was with the belief
that he was very close to dying (since that’s what J’s doctor
had told me), so telling me that he has been in a negative
feedback loop and thus gotten overmedicated and what that
means is that A) he doesn’t need as much medication and he
isn’t in any danger of dying any time soon is going to be met
with some skepticism. I don’t doubt he needs a lot less
medication. I’m seeing that. I know it’s true. But I don't
understand how not needing as much pain medication
equates with a longer life expectancy (especially if it's true
that he never actually needed as much medication as he was
getting). I have asked specifically if he still has a
chromosome abnormality and if Dr. W still thinks his brain
stem is dysfunctional. The answer to both of those questions
was an unequivocal yes. Dr. W, Joshua’s neurosurgeon, said
she stands by her original opinion from November, 2011 and
July, 2012, which is that Joshua has a problem with his
brain stem and it would be too risky for her to try anything
surgically (and her opinion is based on having SEEN
Joshua’s brain stem multiple times over multiple years, so
she watched the progression of its changes). So, knowing
that, and knowing that the geneticist told me back on March
25, 2011 that the chromosome abnormality is a cracked
foundation and that Joshua’s “house” (body) will eventually
fail because of that cracked foundation, I am having
difficulty blindly trusting the opinions of doctors whose
specialties are not neurosurgery or genetics, especially when
they've been wrong before.
I think everyone wants to believe that since Joshua doesn’t
need nearly the amount of pain medication that he’s been
on, it HAS to indicate that things in his head aren’t as bad as
they used to be. That maybe because he’s bigger and older, it
could mean fluid is flowing better now and it could mean
that his life won’t be cut short for years to come. I like that
theory. I do! I have never been in any rush to lose my little
boy, so I will be happy to have him here with us for as long
as possible. However, in the absence of any proof that the
fluid flow is better, I do wonder if the theory being embraced
by everyone is just as wrong as every other prediction &
theory put forth in the past. Ultimately, I don’t think it
matters much simply because I truly believe that everyone
involved in Joshua’s care (myself included) has always done
their best to make good, appropriate medical decisions for
him. I do not believe anyone ever did anything to
intentionally harm my child (and I know I never did!). So at
the end of the day, whatever damage was done to Joshua’s
brain by the long-term use of high-dose opiates is no one’s
fault and his life on Earth will go on for however long God
has ordained for him to live. My family & I will love him &
care for him & enjoy him for all the days of his life and we
will endeavor to follow the doctors’ advice to live as though
Joshua will be here for a long time and not focus on the
second half of that sentence (the “even though we know he
could die at any time” part). I won't pretend that it is easy to
see the behavioral changes in Joshua or that it doesn't hurt
to listen to his verbal assaults & screaming rages every day,
but I have experience parenting kids with autism spectrum
disorders, so I am going to draw on that knowledge base to
work with Joshua and help him move forward
developmentally. I'll get him re-started in speech,
occupational and physical therapy, as well, and since he
needs a bigger wheelchair, I will see about getting him a new
manual chair that he can push himself in rather than the tiltin-space chair he's been using. I'll buy a kindergarten
curriculum and start working on re-teaching Joshua the
basics that he previously knew but has lost over the past
year. We'll get back to the business of living... just as soon as
we get out of the hospital.
I know this is a lot of information and I am assuming there
will be some questions because I know how hard it has been
for me to absorb all of the changes that have happened and
I’m hearing everything firsthand. I will answer respectfullyasked questions, but please know that any rude or meanspirited comments will be deleted before I see them because I
have specifically asked my friends who moderate this site for
me to keep an eye on the guestbook. Also, for anyone who
may wonder what will happen to the money that was raised
by “the other Kate” to be used for Charley to be able to take
some time off work after Joshua dies, I want to make it clear
that the money will be used exactly as it was intended. Until
Joshua dies, it will stay in the account and it won’t be
touched. I greatly appreciate those who donated to that
fundraiser and do not want anyone to be concerned that
their donation will be misappropriated because that is not
going to happen.
As always, thank you to everyone for your support and
prayers and kind thoughts and encouraging words. This
road has been very rough, especially as of late, and it helps
to know so many care about the challenges that Joshua &
the rest of my family face
September 5, 2013
The MRI and botox injections were canceled. The doctor in
charge today said there was no reason to risk sedating Joshua for
a scan that wasn't going to show us anything we could do
anything with (ie: it was just to satisfy the PICU doc's curiosity
because Dr. W has made it clear while we've been here that she's
not doing anything surgically for Joshua again) and the pain
management doctor said the botox probably offered limited
benefit for Joshua, so we didn't need to do it if he wasn't going
to already be sedated for the MRI. My reaction to the doctor &
nurse case manager who came to tell me this information was,
"Great! Can he eat & drink now, then?" And I handed Joshua a
cup of water and a cookie when the doctor said he could have
them. I was fine with not doing the procedures since it wasn't me
who had requested them and I had, in fact, asked if it was safe to
sedate Joshua for an MRI when the idea had initially been
brought up.
He is still having some intense bouts of out-of-control behavior
and we have videotaped a couple of episodes to show to the
psychiatrist if/when he comes around again. I've been told he is
supposed to be coming in to determine what techniques and/or
medication would help manage this new challenge we have with
Joshua, but with the exception of the initial 10 minute visit a few
days ago, we haven't seen anyone from that department.
It is nice being out of PICU. The room is a bit bigger and there
is a shower in the bathroom. It's the little things that go a long
way in the hospital! Joshua was able to go to the play room
today for awhile and he really enjoyed being in there. We sat on
the floor and played "war" with various cars, trucks & random
toys that we used as barricades. It was a fun way to pass some
time.

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Sep 3, 2013 11:52 PM
Today has been a long day with a lot of meetings and more
changes. I'm not yet ready to talk about everything that is
happening because just when I think I have an
understanding of what I'm being told, the information
changes and I'm left trying to wrap my mind around a new
paradigm shift.
What I can share is that I was told Joshua will be here for at
least a couple more weeks as the team determines how much
they can wean Joshua off the medications he's been on. They
wonder if the meds have contributed to some of his pain &
behavior changes he's been experiencing as of late. Joshua
has been moved out of PICU & will have an MRI of his
brain & full spine followed by botox injections in his
head/neck tomorrow beginning at 1pm. Please pray for those
procedures to go well. Also, please pray for clarity and
wisdom for Joshua's medical team & for God's provision
since my being gone from home for a month was not in our
budget. Pray that we'll somehow be able to get home sooner
than the team is anticipating so that we are with our family
in time for Adam, David & Sarah's birthdays on the 15th of
this month.
Sep 2, 2013 10:10 PM
The psychiatrist has come & gone. I am so glad Adam &
Faith were up here when he showed up because after he left,
I turned to them and asked, "What was THAT?" Seriously,
the biggest waste of 10 minutes of my life. He came in, wrote
some stuff on the dry erase board about the different parts
of the brain that psychiatry deals with, tried to talk to
Joshua as though he was a typical 7 year old (and got
ignored for his efforts), wanted to know if Joshua would
draw something for him (Joshua can't draw anymore) or
color for him (he can't color, either). Asked me what gross
motor skills Joshua has lost and I rattled off a list. Told me
about a website that has training ideas for managing
children with challenging behaviors (ThinkKids.org) and
said that he'd make some recommendations for Seroquel
that any doctor reading Joshua's chart could follow. Um... I
thought the whole purpose of the guy coming here was to
brainstorm OTHER medications aside from Seroquel?
Seriously, he walked out and I was like, "WTH?!?" I told
the nurse that I wanted to see the chart note after the
psychiatrist writes it to see what the doctor's impression was
of the brief visit because honestly, I can't imagine what he
got out of it.
The pain management specialist came by, as well. Long
discussion ending with the plan to keep Joshua on ketamine
& dilaudid & seroquel & gabapentin for now, plus he wants
to do botox injections in a bunch of nerves all over Joshua's
head & neck (40 injections ~ don't worry; Joshua will be
sedated for the procedure) to give him some extra pain relief
(temporarily). He said he's happy to manage Joshua's pain
from a distance and will give recommendations to Dr. S for
however long he is needed. That was definitely the highlight
of the day and I am genuinely thankful for Dr. R stepping
into Dr. G's shoes. It makes me wonder if maybe we will be
able to avoid dealing with hospice once we're back home.
That would be ideal ~ to be able to continue with our home
health & home infusion nurses and not have to deal with
changing over to the organization that has been so flaky with
us.
Today's PICU doctor wants to do a brain MRI to see what
everything looks like inside Joshua's head now, so he'll have
that soon. The pain management doc is hoping it'll be
tomorrow or Wednesday so that he can synchronize his
schedule to come to the hospital & do the nerve injections at
the same time Joshua is sedated for the MRI. I have
requested that we also do a full spine MRI so that we can see
what his back looks like now, as well. The PICU doctor
agreed that was a reasonable request, but never did say for
sure whether she would order it.
I know the question of "Why do all of this?" is probably in
some people's minds. I don't actually know the answer to
that, but I can speculate that, based on what I'm being told,
the doctors want a whole new baseline for Joshua since he
didn't die when they thought he was going to, so now they're
all perplexed and I guess they think that if they get fresh
data to start over with, they'll somehow be able to come up
with answers. Those of us who have been walking this road
with Joshua for so long know that isn't going to happen, but
it seems every time new doctors join the party, they want to
think they can figure him out and give us a solid prediction
for what is going to happen & when. I figure that as long as
it isn't going to harm Joshua and we're already up here,
sure, they can go ahead and bring in all of their specialists
and do all of their tests and get their new baselines. I'm
happy to have the information, myself, since it gives me
perspective on how things are progressing. But you know,
it's not like Charley & I would believe any doctor even if
they DID think they had come up with a solid prognosis. I
mean, they've told us several times that he doesn't have long
to live. We came up here a week ago believing ~ because of
what they told us ~ that we would probably not come home
with Joshua alive. So, really, how would we believe a
prognosis/prediction now? Charley and I already decided
we'll smile and nod and say, "Oh, okay," knowing in our
hearts that only God knows the day & hour and obviously,
for some reason, He does NOT want the doctors having a
clue. And they really don't. Seriously. We've got them saying
that it could be days, weeks or months. Sound familiar? It's
a guessing game for them and I'm refusing to get embroiled
in it. Whatever is going to happen is going to happen when
it's going to happen. The ONLY thing that EVERYONE up
here agrees on is that Joshua will die from everything that is
wrong with him and he will have chronic pain until that
happens. Charley & I are pretty much like, "Uh... yeah... we
already KNEW that." I believe the flurry of new activity is
simply because there are new doctors involved and they are
trying to make sure everything has been tried (we already
know it has ~ we did that almost 2 years ago) and that all of
the data on Joshua is up-to-date.
In other news, the EKG done yesterday showed that instead
of the seroquel & methadone elongating Joshua's QT
interval like those medications are expected to do (which was
where the risk would have been for him having a fatal
cardiac arrhythmia ~ that complication we were told there
was a 'significant likelihood' of occurring), Joshua's QT
interval is shorter than before he was ever started on any
meds. I asked Dr. G how that happened and she shook her
head and told Adam, Faith & me (paraphrasing here), "I
don't know. I am done trying to guess what Joshua is going
to do or why he's doing it. I can't predict anything with him.
Every time I think I know something, he proves to me that I
don't know half of what I think I do. At this point, all I can
say for sure is that I know my name." So... one more
example of Joshua's body doing the exact opposite of what
the average person does in a given situation. Dr. G said she
really shouldn't be shocked anymore because Joshua doing
the unexpected is the one thing we can count on.

Sep 1, 2013 9:11 PM
After having a couple people at the hospital give me the
impression yesterday morning that they believed Joshua's
behavior was caused by poor parenting, I was done.
D.O.N.E. Ready to scream at the next medical person who
looked my way. I did not stay for rounds with the doctors
yesterday. I left & took an extended shower, fuming &
venting to God about what was going on and pouring out to
Him all of my frustration & anger about this entire situation.
I told God that I know I'm supposed to be thrilled to have
more time with Joshua, but right now, I am ANGRY
because days with Joshua are AWFUL. Why would any
parent want more days with their child behaving like a little
monster? Joshua has been kicking, hitting, screaming,
pinching, spitting, & hurling insults. He strongly resists any
procedure ~ even something as simple as a blood pressure or
temperature being taken under his arm ~ so what should
take 2 minutes takes 45 to get accomplished. Giving meds
involves wrestling him and almost pinning him down so the
nurse can access his g-tube while he screams. No one has
been helping me with Joshua; nah, they're content to stay
out of the room unless absolutely necessary and let me deal
with him on my own (or with Adam & Faith's help if they're
at the hospital). Then, to top it off, a couple hospital guys tell
me how I've created this brat child by giving him what he
wants, totally disregarding the fact that saying "yes" to a
child's POLITE requests (which is how Joshua used to ask
for things) is not anything like catering to a brat's demands
(which we don't do)! Oh yeah, I told God, this is just fandamn-tastic! What I really want is weeks or months of this!
NOT!!! I was not feeling thankful for more time with Joshua
yesterday. Nope. I was furious and hurt and so tremendously
frustrated. I had brought a child to Portland whose pain &
behavior were well-controlled and now I was sitting in a
room with the most out-of-control monster child I've ever
seen & no one seemed to be interested in helping me with the
problem THEY had created when they switched all of his
medications! The thought of having to take this child home
and expose my other children to their brother acting so
horrible left me feeling hopeless & crying.
After the anger & tears had mixed with the water from the
shower & gone down the drain, I was left with the
realization that it did not matter what the medical
professionals said because I know Joshua better than they
ever will & their opinion of the situation doesn't change the
reality I am living one iota. I know the truth. I know what
kind of little boy he is and I know that my family doing what
we can to make him happy has nothing to do with the brain
deterioration causing personality changes. Doctors wouldn't
look at a patient with Alzheimer's and blame the caregiver
for the patient's rude outbursts or horrible behavior... this is
a similar situation, albeit with a 7 year old versus a 77 year
old. With that thought in mind, I went back to Joshua's
room to face the war that would rage the remainder of the
day with my child lashing out & hating the world &
everyone in it. Fortunately, right about the time I feel I have
nothing left in me to fight with is when God shows up.
Our night nurse & the PICU intensivist on duty were angels
in disguise. The doctor came in, sat down & asked me how
things were going. Then, most importantly, she LISTENED
and asked questions to gain a better understanding of what
was happening with Joshua. She assured me that she was
hearing my concerns and said she would make sure Dr. L
(head of PICU) got fully informed in the morning that I
wanted a plan to get Joshua's behavioral issues back under
control. Then she told me that children who have behavioral
problems caused by bad parenting develop those problems
over time, not have the behavioral problem appear suddenly.
So that was very reassuring for me to hear.
The night nurse was amazing. Simply outstanding. Right
away, she recognized Joshua's distress for what it was rather
than jump to the "bratty 7 year old" conclusion. She
observed his behavior for a couple of hours and when he
escalated, she got him a dose of Seroquel (first nurse here to
do that) and encouraged me to give him some extra dilaudid.
It took 5 doses of pain meds plus the seroquel to get Joshua
calm. Soon thereafter, he hugged me and said he wanted to
go to sleep. After the day we'd had, I was relieved to kiss him
(without getting smacked) and watch him drift off
peacefully.
Once he was asleep, Juli (the nurse) came in and we began
talking. She was adamant that Joshua does NOT need to be
suffering like this and that medicating him is entirely
appropriate. I asked her what she had been through to give
her that perspective because she had understanding in a way
no one else I've encountered up here (this time) has. She
quietly told me she had watched her mother die over the
course of 7 years from a very rare form of cancer. Because of
that understanding, she is now a strong advocate for
appropriate pain management for her patients, especially
those who are going to die from their conditions. Like the
PICU doctor, Juli promised me she was going to fight for
Joshua to get what he needs. I was so relieved that I hugged
her as I thanked her profusely. She hugged me back just as
tightly, telling me she understands and to know I've got her
in my corner. It was exactly what I needed to hear.
This morning, before rounds, Dr. G came in and sat down to
talk for a bit. We went over changes that she wants to make
and we discussed what the future might look like with
regards to medications. She will be gone in 12 days, so her
goal is to get Joshua set up with someone who is going to be
helpful to Dr. S. I am deliberately trying to NOT think about
the day Dr. G is gone because that thought makes me very
sad. She's been wonderful to Joshua & me. It's going to be
hard to see her go. Anyway, she & I kind of went over the
plan for what we'd talk about in rounds and then the other
doctors showed up & it was time to go out of Joshua's room
to join them.
During rounds, I told the doctors that for the past 3 days, I
had gone along with their plan of not giving Joshua any
behavioral meds so they could determine whether his
agitation was caused by neurotoxicity, but now I'm done and
I believe it's obvious that no, his behavior has nothing to do
with the fentanyl he was on. Dr. L surprised me by admitting
that he's not good with behavioral issues in children (it was a
surprise that he admitted it, not that he isn't knowledgeable
about the topic ~ I'd ascertained that already) but he agreed
with my assessment and asked me who I thought we should
contact to get Joshua the help he needs. He then included me
in the other decisions made and asked if I was okay with
each one. It was nice to be included in all of that versus
standing there listening to the team make decisions for my
child without my input.
Today's changes include:
~ Two of the three methadone doses will be reduced.
~ Ketamine staying the same.
~ Dilaudid basal rate staying the same. Increase frequency
with which Joshua can get breakthrough doses.
~ EKG to check his QTC length (to gauge the severity of risk
of a fatal arrhythmia)
~ psychiatrist evaluation ordered to help determine what
behavior medication "cocktail" should be implemented.
That won't happen today (the eval), but they got the request
in the system.
~ Seroquel to be given as needed and if the initial dose is not
sufficient after 1 hour, he can have a second dose.
When Joshua woke at a little before 4pm, he was
immediately grouchy and uncooperative. After the nurse & I
had to wrestle him to give 4pm meds, we unanimously
agreed to give him seroquel to chill him out. When it kicked
in, Joshua went from telling the nurse he didn't like her and
to get out and never come back to giving her a hug, politely
asking for some strawberry ice cream & thanking her when
she handed it to him. She brought the charge nurse in to
validate the difference she was seeing, then wrote a long
chart note documenting the drastic 'before' and 'after'. I
almost cheered. Vindication feels *good*!
We are currently watching 'Despicable Me' and Joshua is
perfectly content to let me sit on my pull-out bed 6 feet from
him while he lays in his bed. He is being sweet and
reasonable and everything is so much better than it has been
for the past 3 days. I am so thankful for the PICU doctor &
nurse that God sent my way last night and for the help they
gave me to get Joshua what he needs. I feel like there is hope
again and that's worth everything when walking this road.
August 31, 2013
13 hours ago
Those of you praying for a happy Joshua ~ please keep
praying because right now, the happy Joshua appears for
awhile, then disappears again and is replaced by a very
unpleasant version.
We're not giving him scheduled Seroquel right now. I think
it is because the doctors want to evaluate how much of
Joshua's agitation is caused by neurotoxicity from
medication & how much is caused by condition progression
(both cause brain cell death, which means the agitation can
be caused by either or both). I'm at the point of wanting to
cordially invite the doctors to sit in this room with Joshua
for 24 hours so they can truly evaluate his level of agitation
and over-the-top controlling bratty behavior. Really. Let
THEM deal with him for a couple of hours. Even when he
seems happy, it only lasts for as long as everything goes his
way.
The medication changeover is going great. He is stable and
that's great. But he is not "happy". Taking THIS Joshua
home would not be something we could sustain. He is
requiring constant intervention to keep him content and the
happy moments are so weird and NOT Joshua ~ he does this
baby voiced baby talk and is clingy and over-the-top lovey,
which sounds sweet, but isn't after awhile because it's
unnatural. He is often belligerent & rude & acts like a total
jerk (to be quite blunt about it). There are occasional bursts
of time where he's content, chilled-out and more like himself,
but they're the exception rather than the rule. I don't want
to take him home like this. So if you're praying, please pray
that the nurses will recognize that this behavior is totally not
normal for this kid and that the doctors will want to help
manage this aspect of Joshua's behavior versus being
satisfied with simply controlling his pain. Yes, pain control is
imperative, but we need to be able to live with him, too
August 30, 2013

Written 1 hour ago by Kate Parker
Two weeks ago, I wrote that I'd been told that we were
probably at the beginning of the end. Joshua was having
many signs & symptoms that typically indicate that death is
near and the palliative care doctor believed that he did not
have much time left to live. On Tuesday, after being told that
Joshua would have to go to Portland to be admitted to the
PICU for medication management, Charley asked our
pediatrician if Joshua was going to make it back home and
she answered that she did not know... that she could not
guarantee anything. Dr. G had said that if Joshua came to
Portland, he would most likely die in the hospital. When
Charley and I sat down with the whole team on Wednesday
afternoon after admitting Joshua to the PICU, we were told
about the significant risk for cardiac arrest or respiratory
failure associated with the medication changeovers that were
planned and we signed a new DNR accepting the risk that
these medications could have a secondary effect of death.
The chaplain informed us about self-transporting Joshua's
body back home in the event of his death. Everyone truly
thought we were at the "this is it" point.
Now the picture has changed.
With the changeover in medications, Joshua's agitation has
lessened. What the doctors had thought to be terminal
agitation ~ a sign of impending death ~ has now been
revealed to be a side effect of the high doses of fentanyl
Joshua was getting. Nothing else about him has significantly
changed, but he is no longer believed to be imminently
dying. Dr. G & her nurse said that once again, with *once
again* being the key phrase here, Joshua has gotten close to
the edge, looked over, then taken a u-turn and backed away.
Does he still have a life-limiting chromosome abnormality?
Yes.
Does he still have severe chronic pain? Yes.
Does he still face continuing decline in function as time goes
on? Yes.
Does the neurosurgeon still say she can not do anything
more, surgically, to help Joshua? Yes.
Does he still have gut dysfunction, bowel dysfunction &
bladder dysfunction? Yes.
Is he still eating and drinking very little (11 ounces of fluid
yesterday... 6 ounces thus far today)? Yes.
Is he still going to die a whole lot sooner than the average
child his age? Yes.
Could he still experience a sudden fatal event, with his brain
stem herniating out of his skull or his breathing stopping or
his heart stopping due to either his brain stem dysfunction
or medication side effects? Yes.
Does anyone have any actual idea when Joshua will die? No.
And that, too, is the same as it's always been.
Joshua is a child with a rare condition and there's no
literature available to tell us what is going to happen next.
His team of doctors is *excellent* and he has stymied them
repeatedly throughout the years. He zigs when they expect
him to zag. He has opposite reactions to what is anticipated
will happen. The end result is this insane roller coaster that
we are on. We can look at his symptoms and make
guesstimates, but they aren't always accurate. For example,
Joshua eats & drinks very little. The average child could
survive for a couple months on "bites & sips". Does that
mean Joshua could die in another month or two as a result
of malnutrition? Yes. Can the doctors say with certainty it is
going to happen? No. Despite eating & drinking very little,
Joshua's labs don't look like a severely dehydrated child and
he has managed to gain weight some weeks while losing
weight other weeks. That is NOT what anyone would
anticipate seeing, but that is what is happening with my son.
Why? No one knows. They guess that his metabolism is
whacked out now, but again, it's just an attempt to make
sense out of weird things that we all see taking place and no
one really knows for sure.
The palliative care doctor told me she takes full
responsibility for giving misleading information ~ for saying
that she thought Joshua had only a couple weeks left to live.
I told her I was not upset with her and I'm not. We all work
together to manage Joshua's symptoms and when the body
of evidence appears to point in one direction, the doctors
draw conclusions. Sometimes, like this time, they are wrong.
They're doctors, not God; therefore, they're not infallible
despite their best efforts.
So where does that leave us? Well... pretty much exactly the
same, just breathing easier at knowing that the "this is it"
time is not upon us. For whatever reason, it's not Joshua's
time to go to heaven yet (no matter what he seems to think)
and God is granting us more time with him here. As difficult
as Joshua can be at times & as challenging as it is to live this
life, I am not sad to have more days with my little boy.
Please know I never wanted to stir up people's emotions
unnecessarily. That was *never* my intention. I hope people
understand that sometimes a child is expected to die and for
whatever reason, they veer away & improve enough to make
everyone realize that nope, it's not happening just yet. That's
what happened with Joshua & no one had any way of
knowing that it was going to occur.
I genuinely appreciate the help that has been given to my
family. It IS enormously helpful to have assistance with
meals up here & groceries back home. The money that has
been raised/is being raised for Charley to be able to take
time off work for 4 weeks after Joshua dies (the fundraiser
"the other Kate" started a few weeks ago) will not be
touched until the appointed time.
Again, nothing has changed in Joshua's overall picture, but
the immediate situation is different than we thought and we
are no longer concerned that Joshua will die imminently. It
could still happen that he has a sudden fatal event, but
barring that occurring, he will go home and we will continue
on as before, doing our best to keep him comfortable and
peaceful for the remainder of his life.
Aug 27, 2013 5:31 PM
This is Kate Parker's friend, AKA "the other Kate." I just
got off the phone with Kate and she asked me to update you
guys on what is going on. In a nutshell:
-- The hospice director from the hospice that was supposed
to admit Joshua today has said that he is "too complicated"
for hospice and they won't admit him. Seriously.
-- Their pediatrician is willing to manage Joshua's
continuing care BUT needs someone willing to make the
suggestions and recommendation for her. This isn't a
negative or unusual thing. Pediatricians just don't typically
see many children with these types of overwhelming needs
and they rely on palliative care doctors, pain specialists,
hospice doctors, etc. to guide them. With hospice bailing, Dr.
S has no backup or guidance.
-- Joshua is being admitted to the PICU in Portland
tomorrow morning. He's being direct admitted by an
AWESOME intensivist who was willing to step in today
when pretty much no one else could or would. The hope of
all involved is to get Joshua's meds optimized and write a
very comprehensive plan for the pediatrician so that Joshua
can come home under Dr. S's care.
-- While this sounds good on paper, the Parker family has
been told that it is highly likely that Joshua will die in
Portland. This is horrific - for the family not to be there, for
Kate to have to drive 4 hours home and leave him in a
hospital morgue, etc. I'm also the mom of a terminally ill
little boy - trust me when I say this is the stuff that
nightmares are made of.
-- For Joshua to come home, the doctors will need to be
willing to make a VERY detailed flow chart covering every
possible symptom and contingency. He also needs to be
stable enough to survive the 4 hour drive home.
Obviously Kate doesn't have time to write this update
herself. This family really, really needs your prayers. They
do NOT need your advice or suggestions. I KNOW this
situation is just insane, and I know it's appalling that hospice
would take this approach. Kate knows this too. Our own
hospice nurse was here when I got the call from Kate, and
she was appalled. Having said that, right now Kate's time
and emotional energy need to be treated with respect. She'd
love to hear that you are praying for her, but please don't
leave comments suggesting that they try this thing or that
thing. Their pediatrician literally told them that she'd gotten
no sleep all weekend trying to think of different options and
There. Are. None. right now.
I'm also going to make a plea here (Kate did NOT ask for
this) for any sort of tangible support you can give this family
right now. They will be in a huge city and could use ANY
restaurant gift cards - many restaurants do electronic gift
cards and you can have these sent straight to Kate's email.
She's trying to work it out so Adam and Faith can come up
with her - when you've got a child in PICU, it's nearly
impossible to get to the bathroom much less take a shower or
eat if you don't have someone else there to help. Adam can
be a go-fer and get food for Kate but I know that it would be
a tremendous help to have some assistance in this area. Even
a Walmart or Target card can be very, very helpful.
Of course, please be holding them all in prayer. The children
being left at home are going to have to say good-bye to
Joshua tomorrow knowing they may never see him alive.
Kate is having to drive over 4 hours with a hurting child
who doesn't usually even wake up for the day until midafternoon. There will be nothing pleasant or easy about
ANY of this. Please pray your hearts out that this doctor will
be moved with compassion and willing to do whatever it
takes to get Joshua home to his family right away.
Thank you for your support of this precious family. Kate is a
dear, dear friend and I appreciate your love for them more
than I can say.
Blessings,
"the other Kate"
1st post today....
Aug 26, 2013 12:03 AM
Seroquel (the anti-psychotic mood stabilizer) is not working
worth a dang for Joshua today. I am ready to pull out my
hair. Imagine the most unpleasant nagging toddler who is
utterly unreasonable and add a bunch of defiance and
demands and insults and a refusal to ever be quiet, then
multiply that by about 50, and that is what we are living
with. I'm told it's a combination of agitation, anxiety & the
side effects of medications. I'm told it is really common
(almost to be expected) at the end of life. I'm telling you that
it is awful and exhausting and enough to make *everyone* in
this family who is listening to him and trying to deal with
this all of Joshua's waking hours (8 so far today) pray that
God would take him to heaven soon because you know, it's
going to suck when he's gone, so we'd rather it didn't suck
before he leaves, too.
Edited to add: Yes, I know it's not his fault & it's fully out of
his control. I know that. And we do our best to not react and
to stay calm and not let it get to us, but after being hit &
kicked & shoved away & pinched & having our hair pulled
& being verbally attacked by a child for whom discipline
does *nothing* except incite fury for another couple of hours
over the perceived offense (because in his mind, he has done
nothing worthy of being disciplined for), all I want to do is
get into my truck and drive far, far away. I have kids who
want to jump into the vehicle and come with me. And it has
nothing to do with love. We love this child tremendously. We
are just worn out and hurting over this. I will be calling Dr.
G in the morning & am hopeful that she can help to get
Joshua back under control with something simple like a
dosage adjustment.
14 hours later....
Aug 26, 2013 2:09 PM
No matter how caring Joshua's doctors are (and they ARE
caring... and compassionate... and doing everything in their
power to help me to take care of my little boy), the
conversations with them are all pretty difficult nowadays.
I've had numerous conversations thus far today as
information is discussed & relayed & decisions are made.
Some of the information has blindsided me. I hate it when
that happens.
My emotions are raw right now and since it's only noon and
I still need to function for many more hours today, I'm not
going to write everything that's on my mind. I don't want to
leave people worrying about Joshua or my family, though, so
this is a quick "jot" to let you know the basics of what is
going on as a result of my telling the doctors about what
happened over the weekend.
Dr. G and Dr. W (palliative care docs) are in agreement that
Joshua needs some big changes. First changes will be
switching him from IV fentanyl to IV dilaudid, which Dr. S
is getting all set up today in the hopes we can have the new
medication by tomorrow (it has to come from Portland) and
getting Joshua admitted to hospice quickly versus the slower
pace we were going at (Dr. S was trying to work out having
the new hospice nurses meet with the current nurses so there
could be a peaceful hand-off and training session for the new
nurses to learn "all things Joshua"). After the correct dosage
is figured out and he's stable on that, the docs will begin
tweaking his behavior meds. He'll have more added & some
changed. Apparently, all of this was to be expected because
this is what happens when brain cells die off at the end of
life. I was told he'll be on ICU-level interventions of
psychotropic & pain medications and if that isn't enough to
keep him calm, they'll add in heavy-duty sedatives and just
keep him knocked out until he dies.
Just writing that brings tears. I am so sad and angry and
frustrated and despondent and so many other emotions all
coiled together inside me. I'm going to go work out on the
elliptical so I don't blow up or fall to pieces. I will try to
update later tonight.
.

.

URGENT prayers needed for Joshua
Written 3 hours ago by Kate Estes
This is Kate Parker's friend, AKA "the other Kate." I just
got off the phone with Kate and she asked me to update you
guys on what is going on. In a nutshell:
-- The hospice director from the hospice that was supposed
to admit Joshua today has said that he is "too complicated"
for hospice and they won't admit him. Seriously.
-- Their pediatrician is willing to manage Joshua's
continuing care BUT needs someone willing to make the
suggestions and recommendation for her. This isn't a
negative or unusual thing. Pediatricians just don't typically
see many children with these types of overwhelming needs
and they rely on palliative care doctors, pain specialists,
hospice doctors, etc. to guide them. With hospice bailing,
Dr. S has no backup or guidance.
-- Joshua is being admitted to the PICU in Portland
tomorrow morning. He's being direct admitted by an
AWESOME intensivist who was willing to step in today
when pretty much no one else could or would. The hope of
all involved is to get Joshua's meds optimized and write a
very comprehensive plan for the pediatrician so that Joshua
can come home under Dr. S's care.
-- While this sounds good on paper, the Parker family has
been told that it is highly likely that Joshua will die in
Portland. This is horrific - for the family not to be there,
for Kate to have to drive 4 hours home and leave him in a
hospital morgue, etc. I'm also the mom of a terminally ill
little boy - trust me when I say this is the stuff that
nightmares are made of.
-- For Joshua to come home, the doctors will need to be
willing to make a VERY detailed flow chart covering every
possible symptom and contingency. He also needs to be
stable enough to survive the 4 hour drive home.
Obviously Kate doesn't have time to write this update
herself. This family really, really needs your
prayers. They do NOT need your advice or suggestions. I
KNOW this situation is just insane, and I know it's
appalling that hospice would take this approach. Kate
knows this too. Our own hospice nurse was here when I
got the call from Kate, and she was appalled. Having said
that, right now Kate's time and emotional energy need to be
treated with respect. She'd love to hear that you are
praying for her, but please don't leave comments suggesting
that they try this thing or that thing. Their pediatrician
literally told them that she'd gotten no sleep all weekend
trying to think of different options and There. Are. None.
right now.
I'm also going to make a plea here (Kate did NOT ask for
this) for any sort of tangible support you can give this
family right now. They will be in a huge city and could use
ANY restaurant gift cards - many restaurants do electronic
gift cards and you can have these sent straight to Kate's
email. She's trying to work it out so Adam and Faith can
come up with her - when you've got a child in PICU, it's
nearly impossible to get to the bathroom much less take a
shower or eat if you don't have someone else there to
help. Adam can be a go-fer and get food for Kate but I
know that it would be a tremendous help to have some
assistance in this area. Even a Walmart or Target card can
be very, very helpful.
Of course, please be holding them all in prayer. The
children being left at home are going to have to say goodbye to Joshua tomorrow knowing they may never see him
alive. Kate is having to drive over 4 hours with a hurting
child who doesn't usually even wake up for the day until
mid-afternoon. There will be nothing pleasant or easy
about ANY of this. Please pray your hearts out that this
doctor will be moved with compassion and willing to do
whatever it takes to get Joshua home to his family right
away.
Thank you for your support of this precious family. Kate is
a dear, dear friend and I appreciate your love for them more
than I can say.
Blessings,
"the other Kate"

Written 22 hours ago by Kate Parker
More phone calls with doctors and a nurse visit (last one
from this nurse) and I am emotionally wrung out for the
day.
Things I've learned today: switching Joshua to IV dilaudid
will take a couple days to set up. No one knows what dose
he'll need, so instead of starting with a basal dose that
would be a guesstimate of what he'd need, I'll spend 24
hours pushing the button on his pump to give him a
generous dose of dilaudid up to every 10 minutes, as
needed, to control his pain, and at the end of 24 hours, the
doctor will add up how much medication Joshua required
and divide the total by 24 to obtain the basal dose for the
dilaudid. If you think that sounds potentially quite
miserable for my little boy, join the club. I know I'm
totally looking forward to pulling an all-nighter with a child
who may not sleep well because his pain isn't wellcontrolled (yeah, I'm being very facetious; actually, I'd like
to invite the doctor who thinks this is a good idea to come
spend the day and night at my home so she can partake in
this funfest).
He'll be admitted to hospice tomorrow morning at
8:30am. I don't know yet when someone will show up at
our house, but I am assuming (dangerous practice, I know)
it will be tomorrow since I was told the doctors are meeting
at 8:30am to admit him. No one from hospice has called
me yet, so I'm not exactly sure what's going to happen. All
I know is it's going to happen soon.
A few days after dilaudid is set up, there are plans to
change more medications. The new palliative care doctor
felt comfortable changing multiple things simultaneously,
but Dr. G overruled her by pointing out that if we change
too many things at once, we won't know what is working or
what isn't and we won't know what to titrate up or down.
Once again, I am thankful to still have Dr. G on our team to
help me advocate for Joshua. The new palliative care
doctor also "felt strongly" about greatly increasing Joshua's
dosage of lorazepam "because that is the standard of care
for a person who is having agitation" and I told Dr. S (she
was the one who informed me of the new palliative care
doc's recommendations ~ I have not yet spoken with this
doctor) that I strongly disagreed with that idea because we
have already learned that a higher dose of lorazepam
increases Joshua's anxiety in a paradoxical reaction. It'd be
great if this new doctor gets with the show & learns what
we've tried and what has or has not worked with Joshua
before she begins popping off with recommendations left &
right. There are more things she wants to change, but I will
share each of them as they occur rather than list them out
right now because some of them may not actually happen
and I don't want to list everything out and stir up questions
that I don't know the answers to yet.
It is very unnerving to be at the 11th hour and switching all
of Joshua's major medications over to new ones plus
changing nurses & agencies & adding medical personnel
who are not pediatric specialists and who don't know
Joshua at all. It is challenging for me to trust their decisions
and to know that they are making wise choices for him. I
feel like I no longer can relax and know that whatever
medication change is recommended, it's an appropriate one
that I can trust because I trust the doctor making the choice
to start/change the dosage; instead, I feel like now I have to
go back to being hypervigilant to ensure that no one screws
up. I am really hoping that everything is going to go a lot
more smoothly than it could and that everyone works
together to do what is best for my little boy. If he can be
kept calm & comfortable, I will deal with anything that is
put before me. Still, I wish it could be easier and that days
like today wouldn't have to happen. The nurse said that
what I am experiencing is mental & emotional anguish and
I thought that was the best description I've heard because it
really does fit.
Joshua has been doing okay today. "Decent" was the
adjective Dr. S used and that, too, is a good fit. He is very
tired and as long as we keep things low-key around him,
he's tolerating the day. I anticipate bedtime being in the
next hour or so, which is good because tomorrow could be
a very busy day with lots of new people wanting to meet
him, so it'd be great if both of us could be as rested as
possible for that.
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Written August 26, 2013 2:09pm by Kate Parker
No matter how caring Joshua's doctors are (and they ARE
caring... and compassionate... and doing everything in their
power to help me to take care of my little boy), the
conversations with them are all pretty difficult
nowadays. I've had numerous conversations thus far today
as information is discussed & relayed & decisions are
made. Some of the information has blindsided me. I hate it
when that happens.
My emotions are raw right now and since it's only noon and
I still need to function for many more hours today, I'm not
going to write everything that's on my mind. I don't want
to leave people worrying about Joshua or my family,
though, so this is a quick "jot" to let you know the basics of
what is going on as a result of my telling the doctors about
what happened over the weekend.
Dr. G and Dr. W (palliative care docs) are in agreement
that Joshua needs some big changes. First changes will be
switching him from IV fentanyl to IV dilaudid, which Dr. S
is getting all set up today in the hopes we can have the new
medication by tomorrow (it has to come from Portland) and
getting Joshua admitted to hospice quickly versus the
slower pace we were going at (Dr. S was trying to work out
having the new hospice nurses meet with the current nurses
so there could be a peaceful hand-off and training session
for the new nurses to learn "all things Joshua"). After the
correct dosage is figured out and he's stable on that, the
docs will begin tweaking his behavior meds. He'll have
more added & some changed. Apparently, all of this was to
be expected because this is what happens when brain cells
die off at the end of life. I was told he'll be on ICU-level
interventions of psychotropic & pain medications and if
that isn't enough to keep him calm, they'll add in heavyduty sedatives and just keep him knocked out until he dies.
Just writing that brings tears. I am so sad and angry and
frustrated and despondent and so many other emotions all
coiled together inside me. I'm going to go work out on the
elliptical so I don't blow up or fall to pieces. I will try to
update later tonight.
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Joshua Parker's Journal

Written August 26, 2013 12:03am by Kate Parker
Seroquel (the anti-psychotic mood stabilizer) is not
working worth a dang for Joshua today. I am ready to pull
out my hair. Imagine the most unpleasant nagging toddler
who is utterly unreasonable and add a bunch of defiance
and demands and insults and a refusal to ever be quiet, then
multiply that by about 50, and that is what we are living
with. I'm told it's a combination of agitation, anxiety & the
side effects of medications. I'm told it is really common
(almost to be expected) at the end of life. I'm telling you
that it is awful and exhausting and enough to make
*everyone* in this family who is listening to him and trying
to deal with this all of Joshua's waking hours (8 so far
today) pray that God would take him to heaven soon
because you know, it's going to suck when he's gone, so
we'd rather it didn't suck before he leaves, too.
Edited to add: Yes, I know it's not his fault & it's fully out
of his control. I know that. And we do our best to not react
and to stay calm and not let it get to us, but after being hit
& kicked & shoved away & pinched & having our hair
pulled & being verbally attacked by a child for whom
discipline does *nothing* except incite fury for another
couple of hours over the perceived offense (because in his
mind, he has done nothing worthy of being disciplined for),
all I want to do is get into my truck and drive far, far
away. I have kids who want to jump into the vehicle and
come with me. And it has nothing to do with love. We
love this child tremendously. We are just worn out and
hurting over this. I will be calling Dr. G in the morning &
am hopeful that she can help to get Joshua back under
control with something simple like a dosage adjustment.
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Written August 23, 2013 1:50am by Kate Parker
Today was filled with many unexpected things. I had a call
from Dr. G, who is coming back to Joshua's medical team
in a slightly different role than before, We had a good
conversation. She explained what had happened to cause
her to pull back last week and I felt better for having an
understanding of what had changed. When I first heard her
voice on the phone this morning, I thought maybe I had
misunderstood what she said during her, Dr. S & my phone
conference 8 days ago, but she assured me I had understood
the situation correctly. It's just that the issue that caused
her concern has been resolved, so now everything is fine,
and she doesn't want to leave us (Dr. S & me) hanging,
especially since she promised she would be with us to the
end. I apologize for not sharing the details, but suffice to
say we again have Dr. G as a resource for helping Joshua,
which makes me happy because she has done a wonderful
job of managing his needs for the past 8 months and I never
wanted to lose her in the first place.
This afternoon, I had an unexpected visit from Joshua's
home health care nurse. Our visits are typically on
Tuesday, so I didn't have reason to think I'd see her
today. She arrived carrying a small box of candy that was
handmade in a little shop on the Oregon coast & a ziploc
bag of seashells that she had collected for me when she was
on vacation last week. I opened the bag and could smell
the saltiness of the beach & ocean. It was blissful. The
nurse knows I have missed out on multiple trips to the coast
this summer when Charley has taken the kids and I've
stayed home with Joshua, which is why she brought me a
couple souvenirs. Her gift made me smile, but hearing that
today was going to be our last visit before hospice takes
over did not. It is hard to lose good nurses and I always
hate having to say goodbye. The nurse said we can keep in
touch via texts & phone calls, so it's not like I won't talk to
her again, but it won't be the same and we both know it. I
am thankful that God brought Joshua two really wonderful
nurses to help take care of him these past 4 months. I am
praying the hospice nurses will be just as good.
Tonight, just a bit after dinnertime, our doorbell rang
unexpectedly. I looked out the window and did not
recognize the vehicle in my driveway, so I answered the
door somewhat hesitantly ~ it's not like we get a lot of
surprise visitors. I was *thrilled* to open the front door
and see a very special friend standing there! Aunt C helped
out by keeping an eye on the kids when Charley & I were
in Ukraine. Her husband is Joshua & Bethany's orthotist
(he makes their leg braces). We have been friends for 7
years and she is one of those people who do things like
drive 40 minutes after working all day just to bring frosted
sugar cookies and a real-life hug for a friend. I don't have a
lot of local friends who I am close to (I'm more about
quality than quantity), but the few that I have I absolutely
treasure for the special gems they are. There is something
very special about my kids' Aunt C. Seeing her tonight
refreshed me in a way that I can't fully explain, but am so
thankful for.
Joshua didn't have a very good day, unfortunately. He was
woken by a thunderstorm this morning and just the fact that
it was still morning and not late afternoon meant he was
*exhausted* and that, in turn, meant his tolerance for....
oh... pretty much *anything*... was nonexistent. He had
some spurts of contentment, but they were shortlived. Bedtime came earlier than usual and I am hopeful
that tomorrow will be a better day. The good news is that
even though he was tired and cranky, he didn't have an
excessive amount of breakthrough head pain. That is
sincerely very encouraging and shows that we've got good
pain management going on right now (of course, now that I
say that, everything will go down the tubes ~ I say that only
half-jokingly).
The general consensus of Joshua's doctors & nurses is that
a sudden event (heart stopping, breathing stopping) would
be a beautiful thing (their words, not mine) because it
would be less distressing than the slow deterioration we're
seeing and it would be better than dying of malnutrition,
which is where Joshua is heading since his gut no longer
tolerates normal amounts of food. I don't really see a
sudden event as being awesome simply because it would be
traumatic for whoever was around to witness it, but I
understand where the medical professionals are coming
from with that perspective. I decided tonight that I am not
going to dwell on how Joshua is going to die because I
know that the day & hour were ordained by God before
even one had come to be (Psalm 139:16) and, ultimately,
what matters the very most to me is that my little boy go in
a peaceful manner without any pain or fear and I am fully
convinced that request will be granted. I don't know why I
have no doubt about that, but it's one of the things I feel
quite certain about.
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Written August 22, 2013 10:37am by Kate Parker
To answer the recurring question in the guestbook, yes, I
deactivated Bethany's site yesterday. She's fine. My
deactivating her site had nothing to do with her directly; I
am simply unwilling to keep open a site where I am
routinely and maliciously attacked in the guestbook
comments. A line was crossed yesterday and that was it.
After 2.5 years of hateful commentary happening on my
daughter's page, I'm done. I realize that 90% of the people
who left comments on Bethany's page were kind-hearted
and sincerely cared and I do appreciate that, but sometimes
the other 10% is vile enough to make a mom decide that
sharing publicly is not worth it. Unfortunately, this was
one of those times.
Edited to add: I am not seeking sympathy by writing
this. I honestly just wanted to answer the question that
multiple people had asked in the guestbook & by putting it
here in the journal, I can be sure that anyone who reads
here & Bethany's page will see the explanation of why I
took down her page. That's all.
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
Written August 22, 2013 12:48am by Kate Parker
Little man slept a lot today. The alarm on my iPod that
goes off to remind me when it's time to give meds woke
him at 4pm (oops! Note to self: remember to take iPod out
of bedroom in the morning), which was 17 hours after he'd
gone to bed. He wasn't quite ready to be awake, but he
opted to come downstairs rather than go back to sleep,
which was fine with everyone because it meant we got to
spend time with him. :)
He's been in a good, albeit quiet, mood today. We've
watched movies and he drank orange soda and ate a banana
Laffy Taffy & a piece of cinnamon toast. At a bit after
8:30pm, he told me he was tired and asked to go to bed. I'll
admit, I was surprised by that, which is weird since it's not
like I haven't been told numerous times that as time goes
on, Joshua will sleep more.
I'm happy that Joshie was in a good mood when he was
awake. He enjoyed watching Wall-E and the Lion King 2:
Simba's Pride. We heard him giggle and saw him
smile. He was open to hugs. So, for Joshua, it was an
excellent afternoon/evening.
I am still waiting to hear the plan for how Joshua will be
transitioned to hospice. All I know thus far is that Dr. S is
making a lot of phone calls to a lot of people in an attempt
to get everything lined up so that the transition will be
seamless & as perfect as possible. My understanding is
that the change will happen in the next week. I'm relieved
that we will get to see "our" infusion nurse on Friday. I
appreciate the chance to thank her for all she's done for
Joshua and to give her a hug goodbye and I know that she
will want the opportunity to say goodbye to Joshua, too.
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Written August 20, 2013 1:29am by Kate Parker
I don't have much of anything to report tonight. Joshie is
plodding along day to day, showing signs of decline but
nothing so significant that it makes anyone stop and think,
"Oh wow, this could be it."
He's sleeping a bit more than a week ago ~ about 15-16
hours out of every 24. He's tired when he's awake, but he
fights against napping. His apnea episodes are more
frequent, longer-lasting & his oxygen level drops to
increasingly-lower levels as time goes on. His heart rate is
occasionally erratic. He sits at the computer for hours, not
always doing anything, but wanting to stay at that location,
anyhow. His other favorite place is on my lap in the
recliner, where we rock & cuggle & watch movies. He
drinks less than he eats and, while not fully hydrated by any
stretch, manages to take in enough to keep going. The
mood stabilizer is still helping, but not as well as it did for
the first 3 days he was on it. We are seeing more agitation
again and his tolerance for noise & things not going his
way is exceptionally low. I strive to keep Joshua happy so
that the rest of the kids aren't unduly stressed, too. It's a
balancing act that is getting increasingly more difficult to
achieve as time goes on.
I am thanking God for each day with Joshua because as
long as he's here, I can hold him & squeeze his hand & kiss
him & smell his hair & feel his arms around my neck &
listen to his little-boy voice. When he is gone, all of those
things will go with him, so even though this road is HARD
to walk, I am still thankful for it because it means my little
man is here with me. That said, I do still pray almost every
night for God to send His angels to take Joshua to heaven ~
whenever Joshua asks me to pray for him to go to heaven, I
do. And I mean it sincerely. I can recognize that an event
that will be good for Joshua will be bad for me and I love
him enough to want what is good for him to happen. I'm
not in a rush for it to occur, though, so for as long as God
chooses to let Joshua stay with me, I will wring every drop
of "good" that I can out of our time together. Some days
are more full of those drops than others, but thus far, I can
still get at least a few good moments each day. My prayer
is that for as long as Joshua is alive, that will always be the
case.
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Written August 17, 2013 7:12pm by Kate Parker
Long phone conversation with Dr. S today. More changes
are coming. Dr. G signed off Joshua's case. Yes, after
assuring me repeatedly that she would be with us for the
duration of Joshua's life & that she would not break her
word like Dr. T did (when he left Legacy but promised he
would remain available to Dr. S for consultation), she's
now uncomfortable with managing him at the doses of
meds he is on, so she's done. I do understand her
perspective & I respect that she knows her limits, but losing
her is not something I'm thrilled about.
So, at this point, if we don't want to admit Joshua to a
hospital to live out the rest of his life (we don't), the only
option available is to put him back on hospice. The hospice
organization that we used the first time (summer/fall, 2011)
is who we're going back to. A person from that
organization called me and assured me they learned a lot
from Joshua the last time and now, this time, they will have
better protocols put in place and parameters all set up for
medications and they have picked 2 nurses for him instead
of just 1 and Dr. S will be collaborating with the medical
director & a somewhat-local palliative care specialist so no
medical decision will be made for Joshua without the direct
input of the doctor who knows Joshua best and blah, blah,
blah. Basically, they are saying the same crap that
happened last time won't happen this time. Okay, great. I
hope they mean it & time will tell on that. But once again,
the team taking care of Joshua is changing, which means
the nurses he is attached to are leaving & we will have to
train new nurses about All Things Joshua AGAIN and that
is stressful, especially right now.
Dr. S told me that she will call the home infusion company
& hospice on Monday and ask if there is any way we can
do a training session this upcoming Friday so the hospice
nurses can watch how the infusion nurse does everything
with Joshua when it comes to port de-access & reaccess. Yes, the hospice nurses know how to work with a
port, but Joshua has specific routines that we follow and in
the interest of trying to make the transition easier, Dr. S
suggested letting the hospice nurses watch what the
infusion nurse does and letting the infusion nurse train the
hospice nurses on what "tricks" she employs to make these
procedures easier for Joshua (because our infusion nurse is
awesome & I am very sad we are going to lose her). I
thought that was a good idea and I am hopeful it will work
out. At the very least, I want Joshua & the rest of my
children (and myself) to have the opportunity to tell both
the home health nurse & the home infusion nurse
"goodbye".
I realize some people have fantastic experience with
hospice, but we've tried it twice & it has sucked both times
because we live in a small town where neither organization
has any significant experience managing pediatric patients
and neither was good at managing a dying patient who
didn't follow their flow charts. Who knows, though...
maybe the third time is the charm & the hospice people will
have gotten their act together & will be great for Joshua.
We'll see. It's worth dealing with the intrusion of strangers
into my family's life if it means Joshua can stay home
where he wants to be.
He is having more head pain today, but each episode is still
easily controlled by just one bolus dose of fentanyl. The
mood stabilizer is still helping to keep him calm, which is a
relief. I do want to clarify that Joshua is nowhere near
being back to "the Joshua we know & love"... he is not
"himself" anymore and we don't anticipate he will be ever
again this side of heaven. He is simply a little boy who has
been drugged into a chilled-out state and still wants his
mom to never leave his side and needs to be able to control
everything around him in order to feel okay. My family &
I are happy to have this version of Joshua around because it
is a vast improvement over the Joshua who wailed
inconsolably for hours and kicked & hit us and said mean
things. But don't imagine that we have our happy little guy
back. We don't. We have a Joshua who is medicated
more-appropriately and thus infinitely more enjoyable to be
around & at this point, we are thankful it's possible to keep
him calm & comfortable, but that is not the same as having
the Joshua from even just 3 months ago. His brain has
changed and there doesn't appear to be any way to change it
back.
Dr. S said that since Joshua is eating a little more &
drinking a little more, he'll probably live a little longer than
the 2 weeks Dr. G had predicted last week before we
started the mood stabilizer that stimulated his appetite. I
asked what we might anticipate seeing happen if Joshua
doesn't experience a sudden event that ends his life and was
told he'll probably get more & more tired and eventually
eat & drink less, which will lead to increased dehydration,
which would lead to kidney failure & then the eventual
shutdown of other organ systems. She said it can be a slow
process, so while we are at the beginning of the end, it may
take awhile. I thanked her for telling me that. It helps to
know what things could look like if the sudden event that
everyone pretty much expects doesn't materialize. Not that
it makes any real difference, but knowing the possibilities
somehow makes me feel less out of control.
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Written August 16, 2013 1:31am by Kate Parker
Things with Joshua right now are surprisingly stable. The
latest increase in fentanyl in conjunction with the addition
of the mood stabilizer (which is an anti-psychotic) has
resulted in achievement of our primary goal: to keep
Joshua comfortable & calm.
To look at him, you wouldn't think he was close to
death. He's more tired and has slowed down, but he is not
sleeping around the clock ~ he's awake about 9 hours a
day. Interestingly, the mood stabilizer is stimulating his
appetite, so he is eating more. Unfortunately, eating still
causes his stomach to hurt, but that pain does not always
deter Joshua from asking for food. He is not eating enough
to thrive, but he is eating probably double what he's been
consuming each day during the past couple of weeks. I
think his doctors were basing their prediction of Joshua
having only 2 weeks to live off the fact that he hadn't been
eating or drinking much. Now, though, with the sudden
interest in food again, I wonder if he will live longer than
the predictions. After all, Dr. G told me at the beginning of
this month that a child could live for up to a month on sips
& bites. Now that Joshua is ingesting more sips & bites
than he's been doing for the past 2 weeks, will that result in
more days of life? Only time will tell, I know.
There is, according to Joshua's doctors & pharmacist, a
significant likelihood that the mood stabilizer he is on will
interact with one of his pain medications and cause a fatal
heart arrhythmia. That might be part of the reason I am
being told that Joshua's life is not going to go on much
longer. I hesitated mentioning this because I didn't want to
have to field questions about why would we give him a
medication that we know has the potential to interact with
another medication and cause a heart attack. The short
answer to that is this: Joshua *needs* to be on a mood
stabilizer because of the severe agitation & distress he was
experiencing (anti-anxiety meds were not enough. He is
still taking those, as well). He also *needs* the pain
medication he is on and no, we can't simply switch him to
something else because it would not matter ~ all mood
stabilizer medications interact with pain medications, and
the pain meds interact with the other meds he takes (ie:
methadone interacts with zofran). In terminally-ill patients,
it typically gets to a point where a person is receiving
multiple medications that have the potential to interact
badly with each other, but because the person is going to
die anyway, the benefit of controlling the symptoms
outweighs the risk of the potential drug interaction. That
may seem harsh, but that's the blunt truth of the way it is
and that is where we're at with Joshua. At this point, I don't
really care what we give him so long as our end goal of
keeping him comfortable & calm is achieved. It's not like I
have to worry about long-term effects of medications and
it's not like we are robbing him of months or years of goodquality life if he does experience a negative drug
interaction. It's also not like we would ever know for sure
that it was a drug interaction that led to his death. It could
just as easily be his brain stem, so... shrug... as awful as it
may sound, I'm okay with him being on the meds. Calm,
mellow Joshua is much more enjoyable to be around than
angry, hurting, screaming insults Joshua. It's worth it to
have the chilled-out Joshie here for however long he has
left to live.
At this point, no one knows how Joshua is going to die. He
could have a sudden event ~ either a heart attack caused by
a fatal arrhythmia brought on by a medication interaction
OR cessation of breathing & heart beating caused by the
sudden displacement of his brain stem into his spinal
canal. He could experience apnea caused by his brain stem
ceasing to function properly & the lack of breathing would
eventually also cause his heart to stop beating & he would
die. He could also experience bradycardia that is severe
enough to affect his oxygen level and then his heart would
stop, followed closely by his breathing stopping, as
well. Truly, no one has any idea. There is no body of
literature that the doctors can read & then say, "Okay, the
other 200 people who had this condition had this & this &
that happen and then they died of this
event." Nope. There's no literature. No studies. No one
else with this who we can look to to glean ideas of how this
might develop. As such, the doctors are doing their best to
guess based on the symptoms Joshua has and how he
behaves. Then they tell me what they think... and then
Joshua does his own thing and leaves us all wondering
what is going on inside that little body of his. It is a crazy
emotional roller coaster.
No one in my family (including me) wants Joshua to die
and we don't want to have to live without him, but we also
don't want to see him existing in this limbo of "not really
living, but not actively dying" for an endless time. The
world is going on around us, but we can't join in because
even though there are still children to be fed and groceries
to shop for and laundry to do and dishes to wash and
orthodontist appointments to keep and school to prepare for
and bills to pay and a job to work at (Charley & Adam),
there is a little boy who doesn't want his mommy to leave
his sight & wants her to stay with him even when he sleeps
and that little boy could die at any moment, quite literally,
so everyone wants to be physically close to where he is and
they want to love on him as much as possible and when
they go to bed at night, they say "Goodnight" as though
they are saying "Goodbye". It is an **incredibly**
difficult place to be, emotionally and mentally. For the
sake of my children, including Joshua (who still asks me to
pray every night that the angels will come to take him to
heaven), I hope God does not let this drag on & on. Joshua
is ready to not hurt anymore, to be port-free & shunt-free &
g-tube-free and scar-free. He is ready to run & play & be
happy once again. And as agonizing as it is to even
*think* about what that means for me ~ a life without
Joshua physically present ~ I can't beg God to let him
stay. It will be horrible to lose my baby boy, but I keep
telling myself that accepting that this is better for Joshua
and that he'll be happy while he waits for the rest of the
family to join him in heaven will somehow, hopefully, help
me after he's gone. I don't think it's actually going to work,
but it's the lie I'm telling myself because it's what is helping
me to get through what we're going through now.
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Written August 14, 2013 1:14am by Kate Parker
(1 of 2 ~ please read
the journal entry below this one, too. I posted it about an
hour ago and then had this happen and needed to post
again.)
My God is able to do exceedingly, abundantly more than I
could ever ask or imagine. Want proof?
Joshua stood up an hour ago & announced, "I want to do a
hand casting." As Adam & I prepared the alginate, Joshua
told me very seriously, "This is the last time I will do this
with you, Mommy."
This is the result. I cried as I peeled the alginate away from
the plaster and saw the perfection of my little boy's hand in
mine. A memory of this day that I never anticipated
getting... I never thought to ask the Lord for it, yet He
knows me & what would warm my heart. Thank you, Papa,
for this gift on top of so many others today.
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Written August 14, 2013 12:30am by Kate Parker
(2 of 2 for August 13, 2013)
Today's phone discussion with Dr. G was a tough one. We
are having the phone conference with Dr. S tomorrow since
Dr. S couldn't carve out enough time to do it today, but Dr.
G talked with me for 25 minutes about the next steps we
are taking to get Joshua comfortable and calm.
She increased his fentanyl again. The basal rate is now
almost doubled from what it was yesterday
morning. Joshua can now have bolus doses every 10
minutes, if needed, as well. That increase helped him to do
much better in the pain department today, which was a
relief.
Dr. G also recommended Dr. S prescribe Joshua a mood
stabilizer since the anti-anxiety medication he is getting has
not helped and, as we've increased the dosage, has actually
worsened his behavior & anxiety & mental/emotional
distress. Very unfortunately, however, the risk of drug
interaction between any mood stabilizer and one of the pain
medications Joshua is on (and cannot be taken off of) is
significant. After much intense discussion where every
angle was considered, I agreed with the palliative care
doctor that giving Joshua this medication was the
compassionate choice. At this point, he is completely
miserable and that makes everyone else miserable. The
mood stabilizer carries the potential to give Joshua some
calm and peace for his remaining days.
This afternoon, I posted a prayer request on Facebook. I
wanted to post it here, as well, but truly did not have time
to do so before I had to go out to pick up a new pulse
oximeter since Joshua's stopped working at 1am last night
(it was still under warranty, thankfully). What I wrote was
this:
"I had a 25 minute conversation with Dr. G about Joshua.
We are starting a medication that has very significant risks
associated with it. I will elaborate later ~ I have to run and
don't have time to do it right this second ~ but I REALLY
wanted to ask you to pray for something specific and
incredibly important: please pray for the time the children
and I will be spending with Joshua tonight to be a time
where Joshua will be able to be calm and loving and, most
importantly, where he will be able to express to each
brother and sister what is in his heart (his feelings of love
for them). I am not being melodramatic or overdramatizing
this ~ it is that serious ~ please pray for tonight... for God
to touch Joshua and enable us to have 30 minutes or more
of the Joshua we know & love... not the Joshua that he has
become. It has to be tonight. And it will take an act of God
to make it happen. I know this and I am believing it can
happen and that God will grant us this enormous gift.
Like I said, I will explain what has changed and what is
going on later today. Please... please just pray for this. If
you never pray for my family again, please ask God to
grant us this request."
About an hour ago, I posted this update:
"God answers prayers. I know this because He answered
ours.
Joshua has been uncharacteristically calm & pleasant
tonight. He has been sweet, loving, generous (asking me to
please go to the store to buy treats so he could give them to
his brothers and sisters because he loves them so much ~
yes, I got him everything he asked for). He has proclaimed
his love for everyone individually. He is hugging and
accepting hugs & kisses from everyone. He apologized for
telling me he did not love me anymore last night, saying
that when he said that, he did not mean it and that he really
does think I am the best mommy in the world and he loves
me forever (he's NEVER remembered that he's been
hurtful... this is the first time he's acknowledged that he
said unkind things, much less apologized for it). Right now,
he is playing quietly with Isaac, his best friend. He ate an
entire ice cream "drumstick" without complaint of belly
pain. God has given my family the gift of this night. Thank
you for praying and asking Him to do so."
We seem to be at the beginning of the end. What that end
will look like and what day it will occur is only known to
God, but Joshua's doctors believe his remaining time is
very short (maybe a couple of weeks). My family is
grateful for prayers during this very difficult time as we
soak up every moment possible with Joshua and try to keep
functioning despite knowing what is coming.
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Written August 12, 2013 7:24pm by Kate Parker
I spoke with both Dr. G (palliative care) & Dr. S
(pediatrician) today. Dr. S is out of town until tomorrow, so
the only definitive decisions made today were to schedule a
phone conference between the 3 of us tomorrow morning
and increase Joshua's fentanyl ~ basal rate by 40% and
bolus dose by just 10% (since we did a big jump last
Friday). Dr. G is concerned that Joshua's body may not be
metabolizing methadone effectively anymore due to his
becoming tolerant of it. We will (probably) trial IV
methadone to see if it IS still effective, albeit not through
his gut, and if it does not work, he will have to be switched
to a whole different class of medication ~ specifically,
Ketamine. That drug freaks me out because I've seen
Joshua on it and it was not a pleasant experience for Adam
& me when we did because he hallucinated & kept trying
to get out of bed because he didn't feel any pain and
therefore thought he was fine to move around despite being
tethered to many machines (in PICU, November,
2011). He was out of his mind & not coherently
communicative... it was not a medication I ever wanted him
to need again. Read this for a brief intro to Ketamine if you
are interested: http://www.drugs.com/cdi/ketamine.html
Dr. G is also planning to start Joshua on a low-dose antipsychotic (mood stabilizer) in addition to the ativan since
he is still so agitated/anxious/distressed during his awake
hours. She is hopeful this will help keep Joshua much more
calm.
She said her goal is to get Joshua as comfortable as
possible, as pain-free as possible (knowing 100% pain-free
status is most likely not going to occur), as quickly as
possible so that we (his family) can have peaceful time with
him for however long he has left to live. Charley & I are in
agreement with those goals. The side effects of achieving
those goals are not insignificant, but we are at the point
where we all agree there is no other compassionate choice.
I'll update again tomorrow after I speak with the
doctors. Thank you for your prayers & caring for Joshua &
my family. Your support at this time is invaluable to
Charley & me.
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Written August 12, 2013 1:21am by Kate Parker
Joshua had a 20 minute bout of not being able to swallow
last night. He literally could not make himself swallow and
he was completely freaked out by it. Tonight, he had a 10
minute episode of not being able to open his eyes. No
matter how much he tried, he couldn't make his eyes open
& then stay open. I'm thinking this is definitely caused by
his brain stem but I don't actually know for sure.
I will be calling Dr. G in the morning to request that Joshua
be transitioned from oral methadone to IV methadone
because the ever-increasing doses of oral methadone aren't
doing a blasted thing to help Joshua and I suspect it is
because his gut isn't absorbing very well anymore. Dr. S
said she is fine with the idea of changing Joshua over to IV
methadone, but we need palliative care to be in agreement
before Dr. S will do it because she (Dr. S) needs dosing
instructions from Dr. G.
Please pray for me to have the right words and for Dr. G to
have wisdom about what would be best for Joshua, and if
IV methadone is not the best choice, that Dr. G would have
an idea of what we should do, instead. We need to find
something ~ or a combination of things ~ that will give
Joshua (and, consequently, the rest of the family) a break
from the anxiety, pain & misery he is enduring. Tonight, as
I was rocking him in the recliner, he was crying as I quietly
sang, "You Are My Sunshine," which is one of "our" songs
(I substitute "Joshie" for "sunshine" in the song). When I
finished, Joshua hiccuped, then tearfully told me, "Your
Joshie is sad and in pain." Broke. My. Heart. I am now a
mom on a mission. My goal for tomorrow is to get a plan
in place, if not put into effect (which would be ideal), to
make positive changes for Joshua ASAP. I am reminded of
Dr. W's words (neurosurgeon) at the end of October, 2011,
when Joshua was in tremendous pain & she told me, "I
can't stop him from dying, but he doesn't have to die like
this." That's what I am thinking now: I can't stop him from
dying, but he should not have to die like this. I KNOW
something can be done to make this easier for him, so
tomorrow is the day to make some calls & make it happen.
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Written August 10, 2013 12:31am by Kate Parker
It has been a very hard, very sad, very emotionally taxing
day. Joshua has been having pain that awakens him earlier
than his body is ready to be up. The result is that he is out
of sorts and on edge, which is never a good thing on "poke
day" (when his port is de-accessed & the needle & dressing
are changed). By the time his nurse came over this
afternoon, Joshie had been agitated and unhappy for several
hours.
The de-accessing & re-accessing of his port went
surprisingly smoothly, but immediately afterward, with his
head hurting because he'd been without fentanyl for 30
minutes & both a clinician's bolus & a regular bolus not
enough to get him comfortable again, Joshua had a
complete meltdown. He laid on the couch, crying and
wailing, "My head hurts!.... My head hurts very badly!...
DO SOMETHING!... If you love me, then help me!"
Nothing the nurse & I tried made a difference; in fact, even
the gentlest touches were interpreted as painful, so when
the nurse touched Joshua's ears, he shrieked and then cried
about how "D hurt my ears!" The nurse sat with me and
experienced the complete helplessness that I feel every
single day of pushing that fentanyl button as often as it's
allowed and seeing it not help while listening to a little boy
in agony. Eventually, she called the pediatrician and got
verbal permission to reprogram Joshua's pump so he could
get more fentanyl per dose. The higher dose, combined
with 2 more smaller doses, finally got Joshua's pain under
control and he stopped wailing and closed his eyes for a
short rest. I thanked our nurse for staying to help me get
Joshua through the crisis. I think it was eye-opening for
her. Not that she's never seen a child hurting severely, but I
have told both of our home nurses & Dr. G & Dr. S how
Joshua has upwards of 6-8 hours of misery each day and I
don't think anyone realized just how BAD it actually is.
And yes, it IS bad. It's awful, actually. If he's not crying
because his head hurts & accusing me of not loving him
because I won't do anything to make him not hurt anymore,
he is angry & biting everyone's heads off with meanspirited comments. It is like a serrated knife being twisted
in my chest to see my little boy like this and not be able to
help him.
Dr. G, Joshua's palliative care doctor, called early this
afternoon and listened to Joshua being unpleasant. I talked
over his grouching for about 10 minutes and then he began
loudly insisting that I whisper because I was hurting his
head by talking, so I extricated myself from under my
child's body (he was laying on me in the recliner) and when
he protested, I lied and told him I needed to use the
bathroom because that's the only thing that he'll "let" me
leave his sight for. I locked myself in the bathroom and was
able to finish my conversation with Dr. G. She told me that
she had been trying to give my family a few more "good
days" with Joshua but she could tell that was not
happening. I told her that unfortunately, we were only
getting short-lived good moments now. She said she could
hear that. We talked about how the bulk of Joshua's awake
hours were spent with him being upset, agitated, frustrated,
anxious, micromanaging everything and everyone around
him, and always hurting with head pain and other body
aches & pains. Dr. G said that since the 'good' is so fleeting
now, it is time to resume aggressive efforts to give Joshua
peace from his suffering. As such, she increased his
methadone, fentanyl and ativan & added breakthrough
doses of ativan that we can give in-between the scheduled
doses, if needed. Dr. G told me our goal is to help Joshua's
pain be as mild as possible & to keep him relaxed and
calm. If that can happen with him staying awake, that
would be great, but the odds are higher that he will begin
sleeping a lot more and that is the price we have to pay to
manage his condition progression & the symptoms it is
causing. I thanked Dr. G for her help, hung up the phone,
then had a small fall-apart in the privacy of the bathroom
before hearing Joshua yelling down the hallway, asking if I
was done yet because he needed me to come cuggle with
him. I took a deep breath & wiped my face, then opened the
door & went back to my boy.
I am pretty sure that my emotional pain equally matches
Joshua's physical pain. I don't want him to sleep all the
time, but oh, how I don't want him to hurt like this
anymore, too! If the only way to protect him from the pain
is to drug him to sleep, then what choice do we have?
None. It is a devastating place to be. Imagine listening to
one of your children crying in pain & begging you to help
them, to do something to fix the situation, while knowing
the only thing you can do (push a button on a pain pump)
takes multiple doses spaced 15 minutes apart before there is
the beginning of any relief. Then imagine listening to that
for hours every single day. If you can envision what that is
like, then add in your other children listening to their
sibling wailing in agony & them trying to say/do things to
help and you having to ask them to stop, to leave their
sibling alone because he is made more agitated by their
voices/hovering, and then not being able to attend to them
in *their* distress because you HAVE to focus on your
severely-hurting child... and this goes on for hours. Every
day. It is heartbreaking. And emotionally, psychologically
& physically exhausting.
I'm so sad. So achingly despondent. My precious little boy
is inching closer to death each day. My other children are
hurting as they watch the dying process. The world swirls
around us, but we are not part of it for this season in time.
If it were not for Jesus, we would not be able to go on each
day. But with Him, "We are hard pressed on every side, but
not crushed; perplexed, but not in despair; persecuted, but
not abandoned; struck down, but not destroyed." (2
Corinthians 4:8-9) I get up each morning and find strength
to make it through the day only because God gives me what
I need to do so. I understand that some may think God is a
jerk because He is allowing Joshua to suffer instead of
taking him to heaven. I understand thinking that, but
ultimately, I fall back on my belief that God appoints a
specific number of days for each person's life and for
whatever reason, He still has days allotted for my sweet
boy. So until the time the Lord sends His angels to come
get Joshua to escort him to heaven, I will thank Him for the
good moments that come, thank Him that good moments
DO still happen, and thank Him for Dr. G helping me to
give Joshua as much comfort & peace as possible.
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Written August 7, 2013 11:14pm by Kate Parker
Before
I update on how Joshua is doing, I want to say, "Thank
you!" to one of my moderators (Kate E.) for hijacking this
journal to give ideas of how people can help my family
during this difficult time & in the first weeks after Joshua
goes to heaven. Charley & I really do appreciate it! And
thank you to everyone who has contributed to the
fundraiser Kate E. started. It means so much to me to know
how much people care about my family through reading
about Joshua's life. THANK YOU!!!!!
Joshua is sleeping more, which is to be expected. He wants
me within touching distance at all times and yesterday,
after I had snuck out of the house while he was sleeping to
run one errand and he was accidentally awakened by two of
his siblings (of course) & had a screaming, hysterical
meltdown because I was not there, I was informed that I
could NEVER leave him again, not even when he was
sleeping. I was also told, by a different child, that I can
never die because listening to Joshua screaming, "I want
my mommy! Get me my mommy! Where is my mommy?"
truly broke her heart and she never wants to experience that
with a child again. *sigh* So, yes, I am now "grounded"
and do not go out unless Joshua comes with me, and
considering his ability to tolerate outings is very, very low,
that means I am staying home. I am happy to be with my
little boy, but having a limited ability to go out without him
falling apart brings challenges since I DO still have other
kids in the house who have legitimate needs and things like
grocery shopping & doctor appointments for Bethany are
now not easy to get done. I'm not trying to sound like I'm
complaining. Really. I am just trying to share the truth of
what living with a child who is at the end-stage of life can
be like. All of those little things you probably don't think
much about ~ like showering or going outside to get the
mail or doing laundry or using the bathroom when you'd
like to ~ become more difficult or even impossible at
times. This is where having a large family is helpful
because everyone chips in to get the work done so it doesn't
all fall on me, and that is a good thing since I am often
stuck in one spot for hours with a sleeping child laying on
me (who will wake up if I dare to try to move away from
him). And, admittedly, I enjoy holding my sleeping boy. I
know I won't be able to do this for a lot longer, so I am
soaking up every moment that I get with him.
He is also experiencing more belly pain, especially when
we give him medications through his g-tube. As his gut
slows down more & more, it is probable that he will
eventually stop tolerating enteral medications. I spent time
on the phone with both Dr. G (palliative care) and Dr. S
(pediatrician) yesterday, discussing what we'll do if/when
that situation occurs. It was agreed that if/when Joshua
stops tolerating medication through his g-tube, we will take
him off two that won't be necessary anymore and then
switch him to IV for the rest. I don't have a time frame for
when that might occur, but I spoke with the infusion
pharmacist, who assured me he has IV methadone in-stock
and is setting some aside for Joshua 'just in case', so if we
have to make a fast switchover, it won't be a problem.
I want to thank everyone for their prayers regarding
Joshua's interaction with his siblings. Yesterday morning,
he greeted David, Sarah & Isaac with a cheerful "GOOD
MORNING!" and welcomed gentle hugs from them. They
all sat together watching "Ratatouille," and then Joshua
played with Isaac for a few minutes before needing to rest.
Tonight, he told each of them that he loves them forever
and he hugged back when they hugged him, which meant
my 3 Little Pigs (our family's affectionate term for David,
Sarah & Isaac) went to bed with smiles on their sweet
faces, which made me happy to see.
Joshua napped from 6pm to 8:50pm, then woke up, drank
an ounce of Sprite and two swallows of water, and said he
wanted to go to bed. I carried him upstairs and, with
Emily's help, got him all situated for the night. He wants
me to turn off my computer and lay down with him, so that
is what I'm going to do. Thank you, again, for the support,
encouragement, understanding, prayers & tangible
assistance that you are giving me (and my family). It helps,
*tremendously*, to not feel like I am walking through this
dark time all alone.
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Here's how to help!!
Written August 6, 2013 2:01pm by Kate Estes
This is Kate Estes - Kate Parker is a very dear friend of
mine and I asked for permission to "hijack" her page to
post some things.
A lot of people have been asking in comments, on FB, etc.
how they can help the Parker family right now. Kate has
never been one who is quick to ask for help and has been at
a loss as to what to tell people. I spoke with her the other
day and I suggested some things that might be a blessing to
her family right now. (I also have a terminally ill son, so
I've got a pretty good idea of the things that can help in a
situation like this!)
If you'd like to do something to tangibly bless this precious
family, here are a few suggestions:
1. Joshua is very clingy right now and it's important that
Kate be able to spend every possible moment at his side
while she still can. It would be a blessing for her to know
that dinner is taken care of. They live in a pretty rural area,
but here is a list of restaurants in their town:
Burger King
Taco Bell
Domino's
Sonic
Applebee's
Pizza Hut
Dairy Queen
Arby's
KFC
Papa Murphy's
Quizno's
Subway
Si Casa Flores
Abby's Pizza
It is a simple thing to purchase a gift card online and have it
mailed or delivered electronically. I know that several of
these restaurants will do electronic gift cards (Domino's,
Pizza Hut, Quizno's, maybe others). Gift cards can be
ordered for Abby's Pizza by going to www.abbys.com.
I know from experience that it is a HUGE thing to have
someone take care of dinner when you are exhausted and
grieving!!!
2. It would also be a help to get gift cards to Walmart,
Albertson's, or Safeway. This would allow them to shop
for groceries or other needed items. I know that Kate is a
very careful shopper but the blessing of a grocery gift card
is that she might feel a bit more free to buy "convenience"
types of foods like frozen entrees that would need little to
no meal prep. A generic pre-loaded Visa or Mastercard gift
card could be used at any of these stores, for gas, etc.
3. I have set up a fundraiser for the Parker family at
https://www.youcaring.com/other/help-joshua-sfamily/77235. This money will NOT be touched until after
Joshua passes away. Joshua's dad is only given 3 days of
paid bereavement leave from work and I would LOVE to
see the entire family able to be together to support each
other during what will be the hardest days of their
lives. The purpose of this fundraiser is to raise enough
money for Joshua's dad to take four weeks of unpaid
leave. Please know that every single donation helps - if
you can't afford a meal card, please consider giving even $5
to this fund. I know that all of you can afford to share this
and I am asking you to do so.
I want to share that Kate was very concerned that people
might think that they were trying to profit off of Joshua's
illness/death. I think anyone who knows her at all
recognizes that nothing could be further from the
truth!! The entire family is extremely thankful for the
support they were offered a couple of years ago when
Joshua's death seemed imminent . We're all so thankful
that the doctors were able to do some surgeries back then to
give the Parkers more time with their dear son, but there are
no more tricks for the doctors to pull out of their
hats. Joshua is eating and drinking only the barest amounts
(adding up to mere bites and sips per day) and all of the
doctors have said that he is very, very near to the end of his
battle. Like I said, this money will not be touched until he
passes away.
The Parker family has not asked for any of this - these were
things that I suggested to Kate. They have done all they
can to set money aside for this, but between prepaying for
all of the funeral expenses and dealing with medical bills, it
has been difficult. I KNOW that if we all give a little, we
can get some meals into their hands and get this
bereavement leave covered!!
Electronic gift cards can be emailed to
kpmomof7@yahoo.com and physical cards can be mailed
to The Parker Family, PO Box 1546, Grants Pass, OR
97528
Thank you for the way you've supported this amazing
family in the past. Please continue to keep them in your
prayers and please see what you might be able to do to help
with these other needs.
Blessings,
Kate
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Written August 5, 2013 2:41am by Kate Parker
I don't know how I am going to survive this. I look at him
sleeping next to me and think of the last thing he said
before he fell asleep ("I love you forever & ever.") and the
thought of not hearing that every night anymore makes me
feel sick inside. I don't want to have to do this... I don't
want to have to live without my little boy. I'm thankful he
is still here for me to hold. I never want to let him go even
though I simultaneously do not want him to suffer a
moment longer than he is forced to. My head asks God to
come quickly and free Joshua from the pain. My heart begs
God to let me have a little more time because the rest of my
life seems way too long to have to live without my son & I
don't want that journey to begin.
I still don't have an idea about how much longer he will
hang on. I emailed Dr. S (ped) and flat-out asked if she has
any idea of a time frame that she could give me. It would
be helpful to know if this is a days versus weeks type of
situation.
Joshua ate a little more today than he has in the previous
days, but the total number of calories he took in totaled
about 300. He drank about 6 ounces of fluid. He wanted me
to take him on a walk around the block, just the two of us,
and he shared things that were important to him as we
went. He told me "The angels are so shiny & bright that
you can't really see them here, but you'll see them in
heaven," and how "God loves us so much He is letting us
live in His home forever." He said he is ready to go Home
and clarified that he meant heaven, not our house. He said
that when the angels come for him, he is going to go with
them and then make sure they come back for me. He
pointed to a flower (weed) he wanted for his collection and
the blue lid to a milk container that was lying on the ground
that he wanted "because it is one of my favorite colors." He
spoke to me of his love for me, telling me I have been a
very good mommy... the best mommy in the whole world...
and that he loves me forever. He asked if I remembered the
times we cuggled (cuddled) and I said I did and he told me
he loves to cuggle with me because I am the best mommy
and when I told him I love to cuggle with him, too, because
he is the best Joshie in the world, he responded that he
knows he is the cutest Joshie in the world (I did not
disagree with him on that). He told me his leg likes to
cuggle with my knee (he drapes one leg over mine at night
as he is falling asleep... how will I go to sleep without
that??? Oh, there are a million things I am going to miss
about this little boy!).
In the evening, he asked if Adam & I could take him out for
a walk so he could tell us something important. As we
walked, Joshua was quiet at first, so I asked, "What did you
want to tell us?" He looked at Adam and said, "I need to
tell you that I love you. I love you SO MUCH. I will love
you forever, Adam." Then he told me he needed to tell me
the same thing... he loves me SO MUCH. Forever. Both
Adam & I assured him we felt the exact same way. We
talked about other things... silly little things like what
colors Joshua likes and we tried to find leaves in those
colors. He found a white rock and a red one and I picked
them up and handed them over to be added to the collection
of 'nature things'. We talked about heaven and God and
angels. We spoke of love and how much we mean to each
other and how that will never change. It was a lighthearted, yet intensely serious, walk as Joshua seemed to be
settling things in his head and tying up loose ends by
making sure he said all the little things he wanted to say.
Adam videotaped the entire 25 minute walk. I am so
grateful he did.
Joshie wants me to get a mine so that I can get him some
gold so that he can make a trophy for Megan and he wants
to write on it, "You are the best sister in the world." He
wants to try going through a car wash (he doesn't remember
ever doing it, though he has). He asked to go to the mini
mart yesterday to try a Laffy Taffy because he never has
had one (actually, he HAS... he loves them... he just didn't
remember). It's odd how he randomly thinks up things he
wants to do. I indulge every whim that I can. It is enough to
make him happy.
He is still pushing Emily, David, Sarah & Isaac away more
often than not and I don't know why. Please pray that he
will soften and let them love on him. Pray, too, that Joshua
will respond and love them back. He has always adored his
siblings and Isaac has been his best friend. It is breaking
their hearts to be pushed away at this time, especially when
they know Joshua won't be here for a lot longer. Please
pray that he will be able to connect in a way that is
meaningful for Emily, David, Sarah & Isaac before he dies.
They need at least one more happy moment with their baby
brother and to hear him say, "I love you."
Tears are filling my eyes as I type and feel my little boy's
leg pressed against mine and glance over to watch him
sleeping. I don't want him to suffer anymore, but I don't
want this time with him to end. When the angels come to
take him to heaven, I will not beg him to stay (though I will
desperately want to), but I am never going to be ready for
this. I have said I'm as ready as I will ever be, but that
doesn't mean anything when it's a situation no mom can
ever be ready for.
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Written August 4, 2013 2:29am by Kate Parker
I don't know how long a child can live without eating &
drinking adequately, but at this point, Joshua is ingesting
only tiny amounts of food and about 8 ounces of fluid in a
24 hour time period. If he drinks more than about an ounce
or eats more than 2-3 bites of food at a time, he says his
belly hurts. This morning, he told me he didn't think he was
going to eat or drink much today. I assured him that was
okay and explained that his body is getting ready to go to
heaven & it is normal to not want to eat or drink a lot when
that happens. He then told me, "I'm so tired," and I replied
that that is normal, too, and that if he wants to sleep, he
should just take a nap. He answered, "I want to get up now,
but I'll go to bed later." Afternoon came & he did nap for
awhile.
He wants me beside him at all times now. I'm "allowed" to
use the bathroom as long as I come back by his side right
away. I asked him why he needed me to be next to him all
the time and he answered, "Because I think the angels
know I want to go to heaven now and I need you to be with
me when they come to take me to heaven. I am going to ask
them if they can take you, too." I kissed his forehead and
said, "Okay, I'll stay with you, and if the angels tell you
that they aren't here for me, you still can go with them
because you know they will be back to get me, too." Joshua
thought about that for a minute, then proclaimed, "Maybe
the angels can only take one of us at a time, so I get to go
first and then you." I agreed with him that that made perfect
sense. He settled back against his pillow, grabbed my hand
and asked, "You will stay with me?" I answered, "Yes, of
course I will. I won't leave you." "Do you promise you
won't leave my side?" he asked with just a hint of anxiety.
"I promise," I assured him. "Except when I have to go
potty, I will stay with you." Joshua relaxed then, snuggling
against me as he yawned, then sleepily sang, "My mommy
is the best mommy ever!" I kissed him and told him, "If I'm
the best mommy, it's only because you're the best Joshie in
the world." My little boy smiled, then closed his eyes to
rest.
I know our time together here is drawing to a close. I don't
have a sense of how much time we have left, but I logically
know it can't be long when Joshua isn't ingesting enough
calories & fluids each day and I cannot imagine a scenario
where his ability to eat & drink normally returns (outside of
a miracle). I'm enjoying each pleasant moment and
cherishing every "I love you," from my little boy, and as
challenging as it is to have to be next to him at every
moment when I have other children who need their mom,
too, I am thankful that Joshua wants me near & that I am
getting this very special time with him. I am asking God to
make the time we have remaining with Joshua as peaceful
as possible & for his passing, when it comes, to be gentle &
beautiful.
Joshua just told me that he wants to go to bed, so I am
supposed to write, "I'm sorry, but I have to go. I'll talk to
you tomorrow." So... my boss has spoken. Good night! :)
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Written August 2, 2013 3:12pm by Kate Parker
One thing I have learned over the past few years is that if a
person asks a question in a guestbook comment, others are
thinking the same (or a similar) question. So, since
someone was gutsy enough to ask me a fairly sensitive
question in response to yesterday's journal entry, I wanted
to take the time to answer it for her & all of the others who
have wondered the same thing.
Let me state very clearly that I was NOT at all offended,
hurt, upset or bothered by the question. I totally understand
it. It's a good question, and while I can only answer it from
my personal perspective and am not speaking as an
authority for every parent who has a terminally-ill child, I
think it is a question that is worthy of an actual journal
entry versus a quick response in the guestbook.
The question was this: "Is it wrong of me to wish for that
final peace for Joshua knowing that it leaves such pain with
the rest of you to endure? Please don't take my question
wrong as when I do think of that it immediately makes me
feel guilty and confused." The commenter went on to add,
"I think it is just hard for those of us who are not in the
situation to wonder if we are thinking or saying the wrong
things. So often when someone passes away from a
terminal illness we think 'it was a blessing' and often I
wonder to myself if that is totally wrong."
Again, speaking from my own personal perspective here,
the short answer would be, "No, it's not wrong." But it's
also more complex than that.
You can think whatever you want, but what you SAY
should be sensitive to the family of the terminally-ill child.
It is important that you remember that you are not privy to
100% of what goes on in the life of a family with a dying
child. Especially on a site like CaringBridge or a personal
blog or even Facebook, the parent who is writing is not
sharing 100% of what is happening. It's impossible to do
that. Think about your own life. Could you sit down at the
end of a day and detail 100% of what happened during the
past 18 hours and every decision that you made and the
details that influenced each of those decisions? Now
imagine that you are writing about a dying child &
decisions associated with his care. What happens (for me)
is that the important things ~ the big decisions ~ get shared,
but not always the reasons for why those decisions were
made. I write to inform others about what is going on & as
a reminder for myself of what happened at what point in
my child's journey. Readers need to understand and always
remember that they do not have 100% of the information,
which is why being sensitive to where a family is at with
regards to their dying family member is vitally important.
YOU may read things in a blog or CaringBridge page and
conclude that a family "just needs to let that child go," and
you may not understand why they are fighting so hard to
still keep the child with them, but again, without 100% of
the details, how can you possibly think you have any right
to judge the decisions that family is making? It is okay to
think to yourself that you don't understand why they are
doing what they are doing. You can think, "I wouldn't do
that to my kid." You can THINK whatever you want! But
when it comes to speaking, take your cue from what the
parents are saying. In my opinion, the ONLY time it is
okay to tell the parents of a dying child that you are
wishing/hoping/praying for their child to go to heaven is
when the parents, themselves, have expressed that
sentiment. And even then, you should speak gently, using
words that are kind and not blunt because even though
parents may be able to accept that their child is going to
die, that does not mean they are anything less than
devastated to know it's coming. It is okay, once a parent has
shared that they are at the point that they want God to end
their child's suffering, to gently tell a parent that you stand
in agreement with them in wishing God would grant their
child peace. You can say that you are praying for
deliverance for their child or even that you hope their child
does not have to endure pain any longer. It is VERY
helpful to follow that sentence with something that
acknowledges how difficult having that wish fulfilled will
be for the parents. The person who left the comment for me
expressed her thought perfectly in saying that she wished
"for that final peace for Joshua knowing that it leaves such
pain with the rest of you to endure." You can say to me that
you hope God takes Joshua to heaven soon because I have
written that my family & I are asking God to answer
Joshua's prayers, which are to go to heaven. You can
soothe the pain that that sentence causes my heart (because
really, what parent wants to hear that people are praying for
their child to die even when they know it is what their child
wants?) by adding something that acknowledges how hard
it is going to be for me to lose my son. You don't have to
do that, of course, but it would be kind.
It is not wrong to want to see a child's suffering end. It is
wrong to tell the parents what you are thinking if the
parents, themselves, are not at the point where they are
ready to let their child go. And it is also wrong to share
your thoughts in a blunt manner, such as saying, "I hope
Joshua dies soon so you can get on with your life," which is
what Charley was told by an elderly woman when he was
at work one day last month.
I think it is normal to feel both confused and guilty when
thoughts of, "I wish Joshua would just go to heaven... this
is so awful..." creep into your head. It feels wrong to think
that about a child because no one likes the reality that
children die. In our heads, it's not supposed to be that way.
Children are supposed to grow up, not suffer endless pain
before they die. So when you find yourself wishing that
God would take a child to heaven, another part of your
brain asks indignantly, "HOW can you even THINK that?"
Tell yourself you can think that because you have
compassion. I believe it is compassion that makes a person
not want to see another person suffer, and it doesn't matter
if that person is 7 or 70. The difference is that when a
person is 70, you can justify wishing their suffering would
end by saying, "They've had a full life." You can't say that
about a 7 year old, which is where I think the guilt comes
from.
I'm here to say that, at least as far as my child goes, you do
not need to feel guilty for thinking it would be merciful for
God to take him to heaven. That is the truth; it would be
merciful. I don't LIKE that it is the truth, but liking
something isn't a factor in whether it's true or not. You
don't need to feel badly for wishing his suffering would
end. I used to feel I was a horrible mother for wanting God
to let Joshua die because what kind of mother ever wishes
that, right? I had a voice in my head accusing me of being
selfish, unloving, uncaring, and telling me that if I was
thinking that God should take Joshua to heaven, then I
would never have any right to say I missed my son &
wished I could have had more time with him because, after
all, I hadn't wanted him when he was here. That last
accusation hit the deepest nerve for me ~ the thought that I
was awful because I just wanted this horrible suffering part
to be over. But here's the thing: that accusing voice was not
God's. The devil is our accuser, not the Lord. And satan
was lying to me by twisting the truth, just as he has always
done to humans. The TRUTH is that I know that after
Joshua has died, I am going to be devastated and want him
back because I don't want to have to live life without him in
it. But you know what? I am not going to want him back
the way he is right now. I am going to want him back the
way he was 3 years ago, when he was healthy & strong &
full of life & joyful and you know, I have already been
grieving the loss of THAT little boy for awhile. The
TRUTH is that being able to look at my ashen-faced son
and recognize that he is only existing rather than living
does not mean I am uncaring. Watching him experience
pain that NEVER goes away and is sometimes excruciating
& causes him unrelenting misery has broken me in a way
that I don't know I will ever fully recover from. It is not
unloving of me to want to see his suffering end. It is not
selfish of me to be tired of living this way, in this
anticipatory grief, waiting to get hit by the train that we
have known is coming for 2.5 years. I never want Joshua to
go away. I simply want him to not suffer anymore & the
only place that can happen for him, apart from a miracle
healing, is heaven. If it is not wrong for me to wish God
would give Joshua peace, it is not wrong for you to wish
the same thing.
With regards to the last part of the comment that I am
addressing ("So often when someone passes away from a
terminal illness we think 'it was a blessing' and often I
wonder to myself if that is totally wrong."), again, it's not
wrong to think that, but I don't know any person who wants
to hear those words spoken to them about their loved one.
That might seem contradictory, but from my perspective, if,
after Joshua dies, someone tells me, "It was a blessing that
he died," what I will hear is, "What a relief for your child to
not be living with you anymore.' I KNOW that is not what
a person would mean when they said those words, but that
is what I would internalize. I think this is hard to explain...
the feeling that it's okay for ME to say that it is a blessing
for Joshua to go to heaven, but to NOT want to hear others
saying it. Here's an example of what I mean: when my twin
brother and I were seniors in high school, we got into an
argument in the hallway at school one morning. As I
walked away, my brother's best friend said, "Man, Kate is
being a bitch!" My brother immediately grabbed ahold of
his friend's shirt and got in his face, telling him, "Don't you
talk about my sister that way!" The friend protested, "Dude,
you're mad at her, too!" And my brother's response was,
"Yeah, but she's MY sister! I can call her a bitch. You
can't!" Curt could tolerate others thinking I was being a
bitch & he actually appreciated their support when he was
upset with me, but he didn't want to hear them calling me
names even though he would call me the exact same
names. That is how it is with the whole "It's such a blessing
that they aren't suffering," comment after a person dies
(again, from MY perspective). I know people are praying
for Joshua to go to heaven and I am okay with that. I am
even okay with suspecting that people are thinking,
"Omigosh, that poor child just needs to die already!" (you
don't need to tell me if you're thinking that, though) You
can tell me that you wish God would give Joshua peace
even though you know it's going to be so painful for my
family to have to go on without him. You can tell me you
are praying for Joshua's deliverance, and that won't hurt my
feelings. But after he dies, do not tell me that it is a blessing
that he's gone. Don't tell me how thankful you are that he is
not suffering anymore. Do not tell me that it is a relief to
know he is at peace. Do not tell me ANYTHING that
begins with the words, "At least." After a child dies, the
appropriate response is sympathy and acknowledgment of
the enormity of the loss for the family who now has to live
without the beloved child. And while yes, it will technically
be a blessing for Joshua to not be suffering anymore and
for him to be at peace, I don't want to be told that because
while HE will be at peace, I will be in agony. Does that
make sense? I really hope so. Bottom line is, I would not
advise anyone to tell any grieving person that it was a
blessing that their loved one died, even if you think it was
and even if you know the family was asking God to end
their loved one's suffering. It's one of those things that is
okay to think, but not so okay to say. If the person tells you
that they're relieved God finally took their loved one to
heaven, you can gently agree, but immediately follow up
with something that expresses your understanding that their
pain at the loss is immense. That is what I would want to
hear, anyway.
I understand people praying for Joshua to go to heaven. It is
what he, himself, prays for every single day, and while my
family will endure great pain after he dies, we are enduring
pain every day already AND Joshua is also suffering. When
he isn't hurting anymore, our pain will be different. I try to
convince myself that knowing he isn't hurting after he has
died is going to bring some kind of comfort in the midst of
my pain, but I don't yet know if there is any truth in that
and I am not looking forward to finding out.
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Written August 2, 2013 2:31am by Kate Parker
The days are a mixed affair. When Joshua is awake,
everything is centered around him out of necessity, so the
other kids and I do as much "normal" stuff as we can while
Joshua sleeps. It feels wrong to be doing things without
him, but that's the reality of where we're at now. The other
kids still need to have happy times, so Charley and I take
turns doing things with them so they still have reasons to
smile every day.
Joshua is about the same. He did get a haircut today after
telling me that he needs to look good to go to heaven &
wanted to know if our friend, who is a stylist, could come
cut his hair since he didn't think he could make it to her
"office". Tonight, she came over & now Joshua is looking
adorable rather than shaggy. She gave me a handful of his
hair (which I put in a ziploc) & we both cried a little after
Joshua hugged her, thanked her and told her goodbye.
Before she left, he said he'd see her in heaven.
An interesting thing that we noticed when Joshua's hair was
cut is that the scar on the back of his head/neck has
widened to about 1/2 inch and is deeper than it's ever
been. My friend who cut Joshua's hair commented on it
and pointed it out to me. I looked and was surprised to see
the scar is definitely "sucked in" now, just like the skin on
his back. It's caused by scar tissue that is attached to the
inside of the skin pulling inward. I can't imagine the
constant tugging is a comfortable sensation for Joshie and I
wonder if that is contributing to his pain. Unfortunately,
there is nothing we can do about it except take care to not
touch the area (which we already do, which is why I didn't
realize how wide & deep the scar had become).
He said tonight that he feels a little sick and when I took his
temperature, it was 100.2 degrees. I have no idea if he
actually has a low-grade fever since he can have a temp of
104 degrees without being sick ~ a result of his autonomic
dysfunction ~ but it makes me sad that he's feeling sick on
top of everything else. The silver lining is that he's been
cuddly (I prefer to call it that versus "clingy") and wants
only me taking care of him, so I get lots of one-on-one time
to love on my little boy. If the increased temperature
continues into tomorrow, I will call Dr. S to ask if she
wants to have the infusion nurse who will be coming over
to draw labs to evaluate for infection. At this point, I don't
know that we'd do anything, but it might be reassuring to
know whether or not he's actually sick. I don't know... I'll
ask the ped tomorrow if Joshua's temp is still elevated.
He is still eating some food each day and drinking by
mouth, but with his inadequate intake of fluid, we are
seeing a corresponding decrease in urine. His methadone
dose was increased again on Tuesday and more adjustments
will probably be made on Friday. Dr. G (palliative care)
told me she anticipates having to tweak meds every few
days for the duration of Joshua's life. She said she doesn't
think we'll see a decrease in the number of bolus doses of
fentanyl that Joshua needs each day, but she is hoping that
by increasing the methadone, we can lessen the severity of
pain that he is experiencing.
Emotionally, he is all over the map and there is no way to
know what we are going to see. Yesterday was a hard day
overall, but today was better (overall). I am thankful for
the sweet times. They make the difficult times easier to
bear.
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Written July 30, 2013 1:54am by Kate Parker
Things with Joshua are progressing. He is no longer getting
fluid through his g-tube because it was causing him belly
pain and he wanted it stopped. I was not sure about
acquiescing to his request, but when Joshua began
deliberately yanking on the tubing to dislodge it from the
pump (causing the pump to alarm) and latching the tube,
which made it impossible for fluid to get into the g-tube
(which also made the pump alarm), I realized he was
serious and accepted his decision. He was only getting one
ounce per hour of pedialyte through his g-tube, but those 24
ounces each day were important for helping to keep him
hydrated. We're at the point, though, that we are trying to
respect Joshua's wishes. This is his life. He has battled
through so much in his 7 years and if getting that
continuous feed hurts his belly and he doesn't want to deal
with it for the remainder of his life, he doesn't have to. It
really is as simple as that.
His sweet little voice is getting more hoarse, which is
another symptom of chiari and indicates he's experiencing
more compression of his cerebellum. He has desats and
apnea throughout the day and his heart rate drops very low
at night, which are, again, more signs of condition
progression.
I hit a very low point this past week as my family & I
wondered WHY God was making Joshua & the rest of us
go through all of *this*. Like it isn't hard enough to watch
this little boy die... he has to be rendered completely
miserable and utterly unlike himself before he goes? I
couldn't come up with anything that made any sense and, to
be honest, I thought God was being kind of a jerk because
He could spare Joshua & the rest of our family from having
to endure all of this, but He wasn't doing anything about it.
I didn't want to talk to God. I didn't know what to say to
Him, so I ignored him for a few days. Oh, I knew He was
there, waiting for me, but I needed some time to be angry,
so I took it.
Yesterday, I tried talking to God again. I told Him I didn't
know what to say, but I wish I had some idea why He was
allowing things to happen the way they were with Joshie.
Immediately, what came into my mind was the thought that
going through this with Joshua is showing me how to truly
live in the moment and how to not hold so tightly to the
things that don't actually matter while clinging to the only
One who is going to bring me through this to the other side
in a way that will (hopefully) be a testimony to those
watching. Then I felt an immense peace. It wasn't like
everything was suddenly all better. Nothing about the
situation changed, but with that revelation, I felt a lot
better. While I don't understand God's plans, I know that I
know that I know that none of this is happening without a
purpose. There is a reason (maybe lots of reasons) for
everything Joshua & my family are experiencing, and we
don't have to understand to continue trusting that the Lord
of our lives cares about every detail & is working things
out in a way that will eventually turn all of this ugliness
into something beautiful.
Early this evening, we had a visit from Joshua's home
health nurse. While she was here, conversation turned to
the fires that are burning near our city & the possibility of
evacuation (not a serious concern where we personally live,
but the nurse lives in an area that might be affected). Joshua
wanted to go outside to see the fire and I told him we could
not see it from our house and right now, the smoke is bad
enough that we are being told to stay inside, to which he
questioned, "Why?" I explained that the smoke from the
fire was making it hard to breathe outside and for a person
like him who already has trouble breathing, it could be
really hard. Joshua immediately responded with, "That's
okay! I would be able to go to heaven!" Truly, the thought
is never far from his mind.
Okay, he is asking me to take him upstairs to bed, so I have
to end this for now. If you are praying for us, please ask
God to enable the firefighters to get control of the Douglas
Complex Fire and the Labrador fire. Charley has assured
me we are in the city far enough that we really should not
have to worry about needing to evacuate, but the air quality
is severely compromised right now (they're saying we need
particulate masks if we go outside & ash is falling on our
cars & all around town) and it would be a huge blessing to
everyone being affected by the fires if the firefighters could
gain some ground in putting the fires out.
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Written July 26, 2013 6:54pm by Kate Parker
Methadone has been increased again, by another 35mg/day.
Ativan (Lorazepam) has been increased by 50%.
Port needle & dressing change went smoothly (thank you,
Lord).
Total number of meltdowns in the past 4 hours? Two
(thank you, nurse D, for staying to help get him calmed).
Total number of blowouts? One (many thanks to Charley
for taking the computer chair outside and cleaning it).
Joshua's volume when he speaks is now very loud. The
nurse hypothesized that maybe he can't hear himself unless
he is loud. It's crazy, though, because he speaks at top
volume, yet gets upset when anyone else is remotely loud.
Part of it is his need to control the situation. He is
incredibly, extremely, insanely controlling now. Part of it is
the pitch of a voice. Higher pitches hurt his ears.
Regardless, it is not pleasant to have him yelling instead of
talking in a reasonable volume.
He feels like there is something stuck in his throat most of
the time now. He tries to eat or drink things to make the
'lump' go away, but nothing works. Why? Because that
sensation is a chiari symptom. It's a lousy symptom to
have, but we've seen it before with Joshie, so we know
what it is. There's no way to make it go away outside of
surgery and, obviously, that isn't an option, so now he has
to learn to cope with this new, annoying symptom.
If I sound like I'm dejected or feeling somewhat hopeless,
that would be because I am. This situation is very wearing.
I spend the hours from when Joshua wakes up to when the
little kids go to bed trying to keep him as happy as possible
so that the little kids don't bear the brunt of Joshua's
negativity. That means I am catering to the demands of an
unreasonable little tyrant. I LOVE that little tyrant & I
recognize that none of this is his fault. I don't blame him for
being angry or short-tempered or even demanding &
unreasonable. I understand and I think I'd be pretty snippy
right about now if I were in his shoes, too. That said, it is
H.A.R.D. to parent a bratty child who can't be disciplined
out of his bratty behavior.
I must go. Joshua is laying on the floor telling the world
that both of his legs hurt, his hand hurts, his head hurts and
his belly hurts. I am not sure why he's aching all over, but
he is. I am going to try to distract him a bit and find the
balance between comforting him enough that he feels I am
sympathizing with him but not so much that he starts crying
because he's thinking about how miserable he feels.
Wish me luck.
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Written July 26, 2013 1:16am by Kate Parker
Things that we're dealing with now that are challenging:
~ Urinary retention. A person receiving large amounts of
narcotics/opioids eventually faces the side effect of having
difficulty peeing. For a child with a neurogenic bladder
who can't just "choose" to go AND who has neuropathic
pain in his urethra which makes cathing an excruciating
ordeal, this side effect is a bad one. We are employing lots
of little "tricks" to help Joshua's bladder empty repeatedly
throughout the day. It's not easy & our hope is that God
will show our little boy mercy by not allowing him to get to
the point where he would need an indwelling catheter, as
that would be the pinnacle of misery for him.
~ Constipation. Another side effect of the narcotics Joshua
is on. Unfortunately, he has a neurogenic bowel caused by
spina bfida (same thing that caused his neurogenic
bladder), so while constipation is something we have
battled his entire life, the degree of constipation he now has
is insane & is requiring large amounts of multiple
medications to produce results.
~ Head pain. Especially at night. In addition to medication
& caffeine (which I am aware contributes to constipation,
but Joshua requests it & I am not telling him he can't have 4
ounces of Coke when he wants it), we have begun using ice
packs to aid in comforting Joshua. Despite the twiceweekly increases in his methadone dosage, he is requiring
more breakthrough doses of fentanyl as his pain is
increasing significantly now.
~ Belly pain. When he eats and drinks, it often makes his
stomach hurt. As time goes on, he is eating and drinking
less, which is to be expected, but it is challenging to have
Joshua ask to eat and know that it will only cause him pain,
which will then have to be dealt with (by tactics such as
draining the contents of his stomach through his g-tube).
Trying to explain to him that eating & drinking will make
his tummy hurt falls on deaf ears, so we compensate by
giving smaller & smaller amounts of whatever it is Joshua
asks for. Sometimes we even manage to "predict" the right
amount he will want to eat or drink and he consumes the
food or beverage without resulting discomfort, but that
makes him think he can eat and drink more without it being
a problem. Trying to reason with the unreasonable can
make a person want to pull out their hair.
~ Perseveration. Joshua will fixate on a question or a
statement or an idea and he can. not. let. it. go. If he
decides he wants me to go to the store and buy some potato
chips (so that he can eat 2 bites of one chip), he will ask,
"Will you go to the store?" 1,000 times over & over & over
& over & over & over & over & over &.... you get the
idea. It doesn't matter what my response is unless it is to
comply with his request/demand. If I am able to give him
what he wants, I do it because it is easier than trying to
reason with the unreasonable. This is not a matter of
Joshua being a bratty little kid who is making petulant
demands. He was NEVER this way until recently. This is
his brain reacting to the chromosome abnormality, the
pressure of being compressed as it is pulled inexorably
downward, and the side effect of the medications he gets
every day. In other words, it it out of Joshua's control. So
when he starts perseverating, I try to comply if I can
because the only way to make him stop is to show him that
someone is moving in the direction of fulfilling his
demand. The problem arises when he perseverates on
something that we can't do anything about, like wanting me
to go to the store for potato chips when I don't have a
vehicle at my disposal or wanting Burger King french fries
(which he'd eat 2-3 of) when the restaurant is
closed. When he has asked for something for 40 minutes
and won't be distracted and realizes he isn't going to get
what he wants, he gets mean-spirited and says hurtful
things. We all try to remember that it's not Joshua
talking. In fact, when something happens in his brain & he
finally stops and then another 30 minutes has passed, he
doesn't remember what happened and if we try to tell him
how he was mean, he insists he would never do
that. *sigh*
Things aren't all bad. In addition to the challenges, we are
seeing bouts of increased affection. When Joshua is feeling
cuddly, he will sit in my lap for an hour or more. He hugs
more than he has in months. He gives kisses and is
effusive in his compliments ("You're the best
mommy/daddy/sister/brother in the world,") and love. I am
reminded of the nursery rhyme that said, "There was a little
girl who had a little curl right in the middle of her
forehead. And when she was good, she was very, very
good, and when she was bad, she was horrid." That is
Joshua these days. Things are either VERY good or VERY
bad with regards to his personality. There really isn't a
middle ground anymore.
I don't want to come across as being negative or a
"downer". Everyone in my family, including me, tries to
focus on the positives each day & we cherish every happy
moment we get with Joshua. That doesn't negate the things
that are challenging, though. It doesn't make the hard stuff
easier to deal with or make it all go away. In fact, the
absolute truth is that the hard stuff is happening more than
the good times, so we cling to each happy event and thank
God that they're still occurring at all. I wish I could write
that things are sublime and Joshua is at peace every minute
of the day, but I've based this entire journal on fact, not
fiction or the way I WISH things were, so all I can do is
share what is actually happening. I don't update every day
because then it WOULD seem entirely negative and that is
not what I want. Like I said, it's not all bad. But,
unfortunately, as Joshua's condition progresses, the good...
the happy... the peaceful... the pleasant... it is diminishing
in quantity. My writing is going to reflect that.
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Written July 22, 2013 9:23pm by Kate Parker
Dr. G ~ Joshua's palliative care doctor ~ called & we had
another hard conversation. Joshua's methadone is being
increased by another 30mg/day & the expectation is that
he'll need another increase on Friday. She no longer holds
out hope that we will find the magical combination of
medications that will give Joshua the ability to be pain-free
while he's awake. There *will* be a dose that sedates him a
lot more than what he's currently experiencing, but we don't
know what dose that will be. She has no crystal ball to see
the future, but based on where Joshua is, the symptoms he
now has & her past experience, she does not believe Joshua
has months left to live. She told me, "I am not saying days,
but I definitely don't see multiple months."
I realize Joshua has outlived many doctors' & nurses'
predictions thus far, but this is the first time this doctor, one
who specializes in end-of-life care, has said something
about a time frame. I realize she could be wrong, but with
what we are seeing every day, I highly doubt she is. And
while I know that Joshua will be happy to go to heaven
(when I told him Dr. G said he'll probably get to go to
heaven pretty soon, he said, "I like that!"), those of us who
love him so deeply and will be left behind & will have to
bear his absence are not really feeling the joy. If you want
to celebrate with Joshua, that's fine to do in the comfort of
your home, but please be sensitive to the sadness my family
& I are feeling and don't tell us how happy you are that
Joshua gets to go to heaven soon. The Bible says that
singing songs to one with a heavy heart is like taking a
person's coat on a cold day or pouring vinegar on an open
wound. If you cannot be kind in your comments, please
simply be quiet. I am not trying to come across as rude or
snotty ~ I'm just telling you that our hearts can't handle
hearing how thrilled others are that Joshua will finally get
to go Home. We are glad his suffering will come to an end,
too... it just hurts so dang much to think about having to try
to live without him.
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Written July 20, 2013 7:12pm by Kate Parker
I regret that I haven't been able to update for a few
days. Nothing significant has happened to Joshua, but I
want to update with how the days are going so I can come
back and be reminded of everything. Writing it down is
insurance that I won't forget. I've had a good excuse for not
coming here, though ~ I've been dealing with some big
things with Bethany as of late, and between her & Joshie, I
have not had enough time to sit and write. Charley asked
me this morning what I had planned for the day & I told
him, "I am going to update both Joshua & Bethany's
caringbridge pages." Here it is, a few minutes before 4pm,
and I still haven't. That should be a pretty good indicator of
the amount of free time I have these days. :) As it is, I will
have to go mix up 4pm meds for Joshua & attend to
Bethany before I can continue on. But hey, at least I've
started. That gives me hope I will get back here shortly to
continue.
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The past 3 days have been filled with the challenge of
battling Joshua's increasing constipation and inability to
urinate. Fentanyl causes both problems, especially at the
dosages Joshua is getting, and his having nerve damage to
his bowel & bladder from spina bifida makes the situation
worse. We have had to greatly increase Joshua's daily
doses of stool softener & laxatives in order to get the
problem under control. As of today, the situation is
better. We are now giving Joshua a full capful of Miralax 3
times each day, a Dulcolax pill (crushed, mixed in water &
put through his g-tube) 2 times each day, 250mg of Colace
1 time per day and, when necessary, either a Dulcolax
suppository or Dulcolax enema. It's a lot of intervention to
enable this little boy to "go," but it's imperative that he's
able to do this basic bodily function.
When the nurses came over this week & I explained what
was happening with regards to the constipation & difficulty
urinating, both of them nodded their heads and were not at
all surprised. I have decided that this "end of life" stuff has
some similarities to having a baby. No one tells you that
pushing out a baby often results in hemmorhoids and that
you are going to bleed for a month afterward, so when a
new mother expresses shock over these developments &
the nurses/doctors nod sagely & say, "Yes, that's to be
expected," the mom is left thinking, "Uh... gee... I wish
SOMEONE would have told me about these little
details!" That is how I feel about the latest changes with
Joshua. I told the nurses & doctors what is happening and
they all had the same response ~ a "right, this is a normal
development," type of comment. Here's a hint, people ~
TELL ME WHAT TO EXPECT!!!!!
I told the nurse yesterday that it would be really helpful to
be informed what kinds of things might happen as things
progress down this road and she answered that no one
wants to scare a person by saying ALL the things that could
possibly happen & no one knows with absolute certainty
what Joshua will experience. Okay, I understand that, but,
as I told her, they could have told me what we'd see as
fentanyl was increased since they know about that. They
could tell me what things MIGHT happen based on
similarities they have encountered among adults who have
had brain tumors or other brain ailments. I understand it's
not a guarantee that Joshua will experience the exact same
symptoms. I'm not stupid! But dang, it's frustrating when
these new things pop up and then my child is miserably
uncomfortable as I try to play catch-up and come up with a
solution to a problem that, had I been informed could
potentially occur, I would have already brainstormed a plan
of treatment for! I tried to articulate these thoughts to the
nurse. I told her I am a person who does better with
knowledge. I'm not going to get freaked out; to the
contrary, I am going to feel less apprehensive when new
symptoms crop up because I knew in advance that it could
happen.
One thing the home infusion nurse told me is a potential
development if this slow decline continues for months is
liver failure due to the amount of medication Joshua's liver
is being forced to filter every day. It's not a probable issue
and I'm not stressing about it, but I appreciated her telling
me that it's a possibility. That way, it it were to happen, I
would not feel like it came out of left field.
Yesterday, Dr. G increased Joshua's bolus dose of fentanyl
by 25%. On Monday, we'll most likely be increasing his
methadone once again by another 20%. Despite the
increase in bolus dosage, Joshua needed 7 breakthrough
doses of fentanyl between 4 & 11 last night.
On Thursday night, Joshua told Charley, Megan & me, "I
want you to call Dr. W and tell her I want her to do that
thing she said would kill me." No one responded. We were
too stunned. Megan recovered first & asked, "You mean
surgery?" Joshua affirmed that was what he was referring
to. I told him that Dr. W (neurosurgeon) was not going to
do surgery again. He asked, "Why not?" I answered,
"Because killing a child on purpose is wrong. Dr. W isn't
going to do a surgery that she knows will kill you. She
doesn't want to kill you." Joshua's response? A matter-offact, "But I want her to kill me so I can go to
heaven!" Charley & Megan both told Joshua a version of,
"That ain't gonna happpen, Dude. Sorry!" So then Joshua
was quiet for a minute, thinking things through, before he
piped up with, "Okay then, I want YOU to kill me so I can
die and go to heaven!" ARGH!!!!!!! We all told him that
we would not do anything to kill him. That only God gets
to decide when a person goes to heaven. Joshua got
irritated with us and said in a pouty voice, "You could if
you wanted to!" His father, sister & I all said, almost in
unison, "Well, we don't want to." Joshua dropped the topic
with us, but folded his hands and prayed emphatically,
"God, please let me die so I can go to heaven because I
really, really, REALLY want to go to heaven
now! Amen!"
For the record, it doesn't matter how much Joshua asks,
begs, pleads or demands ~ we will not do anything to cause
his death. We are not going to overdose him on purpose
just to end his waiting and send him on his way. I want to
make that absolutely clear to anyone reading who might
wonder if that is something we would do since Joshua is
wanting to be done with this life. The answer is NO. No
way, no how. We are not going to be responsible for his
death. When he dies, it will be because God said that
Joshua's days were complete and his time was up. It's not
going to be for any other reason than that. I debated
sharing the conversation that Joshua had with Charley,
Megan & me, but I want to remember it because it's part of
his life's story. I don't want to forget how eager Joshua was
to go to heaven.... he has a longing for his eternal Home in
a way that I admire. He prays all day long, about
everything, without fanfare or care of what anyone around
him might think. He has a relationship with God that I
want to have, too. I don't always turn immediately to God
to share the good & bad in my life. I generally prefer to
talk to people rather than Jesus. I care what others think
about me. My son, however, has it right. He takes
everything to the Lord. He makes his requests known and
he very boldly goes before the Throne of God and says
what's on his mind. I am learning a lot while I watch my
son. I hope that sharing his life helps others, too.
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Written July 16, 2013 1:11am by Kate Parker
Dr. G increased Joshua's methadone by another 25% and
the basal rate of his fentanyl 25%, as well. We'll reevaluate on Friday ~ it takes a few days for the new dose of
methadone to build up in his system ~ and if things are not
better, she will increase his doses again. I'm thankful for
Dr. G's caring assistance. She agreed with me that having
Joshua holding his head as he says, "It feels like a million
persons are hammering nails into me," is unacceptable. We
*will* get his pain under control. Hopefully it will be soon.
This evening, Joshua asked, "Mom, have you ever felt sad
and you don't know why? I'm feeling that way. I think it's
because I haven't spent enough time with you today." He
wrapped his arms around my neck and began softly
weeping as I pulled him onto my lap. I buried my face in
his neck as I cooed and gently rocked him. After a few
moments, he pulled away slightly and said, "See? If I let
go, I feel sad! So I am not ever going to let go." Then he
tightened his grip once more and sat with me for a long
time.
Later, he asked if we could take a walk again like we did
last night. I told him, "Of course," and got him ready to go
as Megan got her dog ready so they could come along. As
we were walking, we saw kids riding bikes and scooters
and skateboards. Joshua pointed and said in a quiet, matterof-fact voice, "Look. Those boys are on scooters. I
remember when I used to be able to do that. Do you
remember that?" I told him yes, I did. Then he pointed
again and said in a more-sad tone of voice, "Look. They are
on bikes. I never learned to ride a bike. Now I can't learn." I
softly ruffled his hair as I walked behind him, pushing his
wheelchair, and agreed, "Yeah, I know. I'm really sorry,
Joshie. I wish I could teach you to ride a bike." When he
saw a yard with sprinklers going, he asked in the same sad,
but factual voice, "Do you remember when we played in
the sprinklers and I could run? I can't do that anymore." I
swallowed hard and told him that yes, I remembered those
days.
We stopped at a mini-mart so Joshua could get a treat (blue
raspberry Baby Bottle Pop) and as we headed in the
direction toward our house, Joshua announced, "Mommy, I
don't want to go home yet." I told him, "Okay, we don't
have to go home," and I turned him down a side street with
the intention of walking the long way home. After ten
minutes or so of walking, I asked Joshua, "Why don't you
want to go home?" After all, we'd been walking for almost
an hour & it was now dark. His response sucked the breath
out of me. "It has been a long time since we have spent
time outside together. Do you remember when we used to
go outside all the time? Before I couldn't go outside all the
time anymore? I miss those times. Will you always
remember those times with me?" Megan & I glanced at
each other and I had to stifle tears before I could softly
assure my little boy, "Yes, I remember those times... and of
course I will always remember those days. I will remember
every day with you, Joshie." Reassured, he sighed & tiredly
said, "Good. We can go home now."
My. Heart. Is. Breaking.
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Written July 15, 2013 3:23am by Kate Parker
We got home on Wednesday. Joshua's methadone was
increased by 20%, but thus far, we're not seeing any
difference in his pain control, which is very
disappointing. We have spent the past several days pushing
the bolus dose button for fentanyl many, many times
throughout the day & listening to Joshie describe his pain
in terms of how many people are hammering nails into his
head (1 or 2 people = not too bad, whereas 10 people =
severe). He wants no one to talk above a whisper, which is
challenging in a house with many other children. I'll be
calling Dr. G in the morning to get different orders because
we really need things to be better than how they currently
are.
Today was an unusual day, with Joshua being exceptionally
clingy. He woke up wanting to cuggle and I was not
allowed to move away from him except to use the
bathroom. He had to be touching me at all times and his
preferred position was resting between my legs, with his
back against my stomach & his head on my chest, with my
arms wrapped around him and him holding my hands up
under his chin so he could kiss them repeatedly. I didn't
mind the cuddly boy. I quite enjoyed just holding him for
the bulk of the day. In the early evening (about 7pm), he
asked me to take him for a walk. Just him & me, so we
could have some "Joshie & mommy time". I laughed &
asked, "What has all day been?" He insisted on going out,
though, so Charley generously offered to feed the other
kids & keep them amused while I indulged Joshua's desire
to go out with only me.
I pushed him in his wheelchair around our neighborhood
and he would point out leaves on the ground that he wanted
me to pick up & give him for his "collection". At one
point, I asked Joshie why he was being so cuddly
today. He told me that he was really, really hoping God
would take him to heaven tonight, so he thought cuggling
with me would be a nice way to spend his last day here...
and didn't I agree? I assured him that yes, I agreed it was a
very nice way to spend the day. He nodded and said, "I
hope God will let me come soon, Mommy. I am going to
have so much fun playing with Chrissie and all the other
kids at the playground." I told him that I was sure he
would have a great time.
Joshua speaks of heaven on a daily basis as a routine part of
conversation. He seems to be trying to figure out what he
needs to say or do to convince God that it's time for the
angels to come pick him up. He will say things like, "Can
we wake up everyone to pray that God will take me to
heaven tonight?" or "Maybe if I tell God, 'God, I really
really REALLY want to go to heaven,' He will say, 'Okay,
Joshie,' and then He'll tell the angels to come get
me." Joshua is certain that his Beppy (Bethany) will be
there to play with him, too, and he tells us how much fun
they are going to have swinging and looking for buried
treasure together at the playground. He is also looking
forward to being able to understand what his sister
says. He seems quite pleased that he will be first person in
our family who gets to have a conversation with
Bethany. We all tell him how jealous we are that he'll get
to do that before the rest of us. We are getting good at
talking nonchalantly and/or cheerfully about all of these
things that feel like a knife being twisted in our chest. I
think that means this has been going on for a really long
time... or we're desensitized... or something. It's not that we
don't care. We do. Tremendously.
I don't really know what else to say. Things with Joshua are
hard. My other kids are sweet & wonderful & pretty much
rock stars as they adapt to the limitations of our life during
this season and I am so proud of them. They love their
baby brother fiercely & they all do everything they can to
make every day as good for him as possible. They talk
openly with me during their sad times and, overall, are
handling the stress of having a slowly-dying brother as well
as possible. But yeah, it's brutal. Despite that, we DO
smile every day. We DO laugh. We DO find ways to
enjoy ourselves as much as possible. We focus on the
positive for the most part, but we refuse to pretend this isn't
a lousy situation that hurts us all because the blunt truth is
that watching Joshua worsen as time goes on DOES
hurt. It is, quite frankly, an awful experience, and I want
my children to know that they can express their anger, fear,
frustration, exhaustion (and any other emotion) to me or
their dad and it's okay for them to do that. They know they
can be frustrated with Joshua, vent that emotion to Dad or
Mom (and get hugged & loved on & assured they aren't bad
for feeling that way), and then they are able to let go of that
negative feeling and go back to enjoying their brother,
which is what I like to see. Every night, as I watch my kids
say goodnight to their brother, I think that if tonight is the
night Joshua is going to die, I want my kids' last memory of
their interaction with him to be a happy one. Allowing
them to be honest with me about what they're feeling ~
even when it's not "nice" ~ seems to help them tolerate the
challenges their brother presents each day and keeps them
wanting to interact with him, no matter what. I thank God
for protecting the tender hearts of my children and for
giving each of them a love for Joshua that refuses to be
stopped.
I am all right. I am mindful of the approaching train and
make a concerted effort each day to enjoy & appreciate the
good moments as they come. I have support from friends
when I need it & if I fall apart, I don't have to cry
alone. God gives me the strength to face what each day
holds & when I need Him, He is always there. When I get
angry with Him, I tell Him and He listens without
condemnation. When I don't understand why He is
allowing the things that are happening & my heart is
hurting to the point I find it hard to breathe, I feel His
presence. When I tell him I know I should talk to Him, but
I really want someone with skin on to comfort me, He
prompts a friend to ask me how I'm doing. In other words,
God is meeting my needs and helping me each step of the
way. I can't imagine having to walk this road without
knowing Jesus. I'm thankful that I don't have to. The pain
of what my family is going through isn't lessened, but He
strengthens us in ways we could not do for ourselves and
that is what makes the difference.
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Written July 10, 2013 1:34am by Kate Parker
We're not home from Portland yet, but the quick update
from yesterday's meeting is that we didn't get great news
about Joshua. The palliative care doctor said we can expect
Joshua's agitation/mental problems to worsen as time goes
on. She witnessed the struggle that we are having with
Joshua and saw an acute pain attack, as well. New
recommendations for pain meds have been made and she
said we are now at the point where we need to medicate
knowing that Joshua will sleep more and that's okay. I
didn't disagree with her assessments or recommendations,
but that didn't make them any easier to hear.
He has needed a LOT of fentanyl today ~ 15 breakthrough
doses ~ and he is not feeling well. I suspected this trip
would take a lot out of him and it has, but it was worth it to
have Dr. G finally meet Joshua and I believe it will help her
with managing his care as time goes on.
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Written July 4, 2013 3:14am by Kate Parker
Things with Joshua
are tough. I have had a hard time trying to update lately
because I don't know how to put things into words in a way
that people who have never walked this road will
understand & not be appalled by.
Joshua's personality continues to change. Not in good
ways. He has lost all ability to wait, to reason or be
reasoned with, and to do things any way other than how he
wants. When he is sweet, he is very, very, over-the-top
sweet (not complaining about that!) and when he is sour,
well... he is very unpleasant & often difficult to handle. He
can sense when he's hungry but can't tell when he's full. It
takes very little food for him to start complaining that his
belly hurts and then he will crouch over a bath towel & hit
himself in the back to try & make himself throw up. As a
result, we are having to control when we let Joshua eat. It
is hard when he is asking for food and I have to tell him he
has to wait for just a few more minutes because I don't
want his tummy to hurt if he eats. That goes over like a
pregnant pole vaulter. He insists his belly is fine and
repeats himself incessantly until he gets what he wants. In
our house, the rule for our kids has always been, "If you
nag, the answer is 'no'." Suffice to say that rule is
meaningless to Joshua & no longer applies. I have been
assured by his nurses & doctors that he is not simply
choosing to be a belligerent, whiny, demanding,
unreasonable little boy. This is all part of his medical
condition as it progresses and it bites. Hard. Lorazepam
takes the edge off Joshua's agitation, but is no longer
eliminating it (yeah, I know, that didn't last
long). Increasing the dose during the day makes him very
sleepy. Increasing the dose at bedtime prevents him from
falling asleep for hours. Why? Not a clue. It is something
I will be asking his palliative care doctor about on Monday
when I sit down with her to discuss all things Joshua.
My little kids' hearts are being broken as they watch their
brother worsen. Each time he yells at them to "leave me
alone!" I see another piece break off. The hurt they feel is
visible in their eyes. They do SO WELL at not snapping
back at their brother. When Joshie lashes out at them, they
quietly back away and say, "Okay, Joshua." They are
doing their best to understand what is happening inside
their baby brother's head, but it's a lot to ask of a 9 year
old, two 11 year olds & a 14 year old. Heck, it's not easy
for the adult-aged kids, either! My fear is that their
memories will be filled with how Joshua is now, which is
NOT the Joshua we have known and loved for 7 years. I
don't know how much the younger kids are going to
remember of their brother ten years from now, anyway... it
hurts my heart to think they won't remember anything but
how he was at the end & to not be able to do anything
about it. Last night, David asked me very seriously, "Can't
you use some mommy magic or something to fix
him?" After a deep breath to hold back the tears that
threatened, I softly answered, "David, if I could do that, I
would have fixed him a long time ago." There really aren't
words to explain how hard this is for my children. People
think about the parents of a dying child, but the truth is that
the siblings struggle and suffer, too. It is a special kind of
agony to watch the effect Joshua's decline is having on his
brothers and sisters. Mothers hate seeing their children
hurt. Mine are hurting every day and there is nothing I can
do about it.
The goal for Joshua ever since the day we learned his life
would be cut short has been to maximize the good days for
as long as we could and we have reached the point where
Joshie just doesn't have good DAYS anymore. He has good
moments. Sometimes he has a couple good hours at a
stretch. But by & large, he struggles and as the days go on,
he is having more bad times than good. He used to have
bad moments in good days. Now the opposite is true. I can
admit that life sucks for Joshua now. I can even pray that
God would please take him to heaven so he can stop
hurting because I know that is what my little boy wants.
The truth is that every member of my family, as well as
Joshua, is weary. Living this way, as we've been doing for
so long, is mentally & emotionally exhausting. We are
worn out. At the same time, we do not want to live without
Joshua. The incredibly hard truth is that we can't get out of
this nightmare version of Groundhog Day with Joshua by
our side. It is tremendously confusing to want Joshua's
misery to end while simultaneously wanting Joshua to
never, ever, EVER leave. I want for him to be granted his
heart's desire to have the angels pick him up & take him to
heaven; I just don't want to have to learn how to live the
rest of my days without my youngest son in order for him
to get what he wants. As long as he is here, I can hold him
& kiss him & hear his voice (even when he's annoying, it's
better than not hearing him at all). How am I supposed to
be at peace with giving that up? Conversely, how can I
selfishly want to keep him here when his quality of life is
dwindling & he is so obviously tired of life? It is an awful
situation and only God can do anything to change it. So we
wait for Him to move, not at all eager for Joshua to die, yet
ready to let him go because we love him so much that we
can't bear the idea of forcing him to go on a moment longer
than he must.
If you pray for Joshua, please ask the Lord to grant him the
desire of his heart & to give him peace so that he can be
comfortable ~ not merely out of pain, but also not agitated
~ so that he can enjoy his days with us. If you pray for my
family & me, please ask God to strengthen each of us so we
can continue walking this road the way He wants us to.
Please also ask Him to protect the hearts & minds of my
children.
Two nights ago, as I waited for Joshua to settle down
enough to sleep, he told me there was an angel watching
us. I asked him where the angel was and he pointed to a
splash of light on the wall. I told him I didn't see anything
and he couldn't believe it. I asked him if the angel was here
to take him to heaven & he dejectedly answered,
"Noooo. Not this one. He's just watching." Then he laid
down and started singsonging, "I want the angels to pick
me up & bring me to heaven!" Over & over, he repeated
that line. I grabbed my camera (I keep one on my
nightstand) and began taping. Of course, as soon as I did,
he changed the lyric a bit, but it's okay. We had a sweet
conversation that was representative of what has become a
nightly routine when my little man is lovey & cuddly. Here
is the link to what I recorded: Joshua, 7/1/13
My family & I will never be happy about being forced to
live without Joshua, but we are as ready as we'll ever be to
let him go when God says it's time. Our hearts will shatter
the moment Joshua breathes his last breath on earth; I have
no illusions about that and I am absolutely dreading having
to face it, but God knows I am also hoping that knowing
our little man isn't suffering anymore will bring my family
some kind of peace that is currently eluding us. The best
moment of his life, when he sees the face of Jesus, will be
the absolute worst moment of mine since it will be the start
of life without my Joshiebear and I am very aware that the
pain I feel every day now is nothing compared to the agony
that will explode in me when he is gone. I also know that
as soon as he is gone, I am going to desperately want him
back & I may even be mad at myself for thinking & feeling
the things I have shared here. Despite that, I can't beg him
to fight to stay here. He isn't living anymore. He is just
marking time until he can leave; as such, we wish God
would answer Joshua's prayer. He is miserable with only
small bursts of sunshine breaking up the sadness. Seeing
him like this is hard (understatement of the day) & it hurts
deeply.
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Written June 28, 2013 1:41am by Kate Parker
Bethany has to go to Portland to see her rheumatologist &
cardiologist and Joshua gets to go along because his
palliative care doctor wants to meet him. Yes, the doctor
who has been doing such an amazing job calling all of the
shots with regards to medications & treatments to help
Joshua live to the best of his ability for the past 6 months
has never met my child. She took over from Dr. T when he
left Legacy Emanuel. I have met her and visited with her a
half-dozen times when Dr. T introduced her to me while
Bethany was in the hospital for her heart surgery & followup appointments last year, but Dr. G has never met Joshua.
She really WANTS to, though, and preferably before a
funeral, sooooooo, because I have to take Bethany up to
Portland, I will take Joshua, too. Dr. G said that giving
Lorazepam might help Joshua to travel better. I anticipate
having to drive for a bit, then stop so he can lay flat for
awhile before we drive some more. I am nervous about
how he will do away from home for a few days and would
be grateful for prayer that he handles it all right. We will
be traveling on July 7th.
Today has been pretty good. With the help of lorazepam,
Joshua has been relaxed & happy for most of the day. He
is needing more breakthough fentanyl and says that if he
bends his neck too much, it makes his head hurt, but aside
from that, he has had a good day. It was a joy to listen to
the kids laughing with their brother again. The medication
doesn't make everything better, but it definitely helps to
make things more "okay".
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Written June 26, 2013 9:17pm by Kate Parker
Joshua's palliative care doc has started him on Lorazepam
(Ativan) to take the edge off his irritability, which she
believes is actually anxiety due to the changes he feels
happening inside his body & his frustration at not having
passed away yet (yeah, that one was hard to hear). I gave
him a dose when I got home from the hospital with
Bethany and wow, the difference is astounding. He is
playing happily (!) on his iPad with Sarah & Isaac sitting
beside him and he's totally fine with that (!) and he is
interacting with them via conversation (!). HUGE
difference from what has been. I am rejoicing at the return
of my little boy. It's amazing what a little medication can
do sometimes. Thank you, God, for Dr. G.
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Written June 23, 2013 3:20am by Kate Parker
I am royally disappointed that caringbridge changed their
site and now I can't use the font style, size or colors that I
prefer. This one-size-fits-all approach is for the birds.
Yeah, I know, it's a piddly thing that doesn't matter in the
grand scheme of life, but I dislike this change. It's one
more thing that is out of my control. I was happy with the
way things were and now it's ugly and I can't do anything
about it. Maybe that sounds insane, but it's how I feel.
Joshua's personality is changing. He is becoming
increasingly bratty and argumentative and combative. His
primary emotions are now negative, which makes everyone
extremely sad. We all recognize that this is NOT the
Joshua we know, but no one has any idea what to do about
it. My almost-12 year old son came to me in tears the other
day, telling me he had been praying and had asked God to
please take Joshua to heaven and put him out of his misery
so that our family can be out of our misery, too. I gently
reminded him that when Joshua dies, we are going to be
sad, so we won't exactly be out of our misery ~ it'll just be a
different kind of misery. David answered, "Yes, but we
will know that Joshua isn't hurting anymore and that he can
be himself in heaven instead of the way he is now while
he's here. That would be better, right?" *sigh*
I don't have words to describe the special kind of pain that
comes from watching my son become less "Joshua" and
more "some kid I don't know". Through everything he has
endured ~ all of his surgeries and procedures and needle
sticks and hospitalizations and loss of skills ~ he has not
been a brat. He was not mean-spirited. As such, the little
boy we are living with now is troubling & it makes me
tremendously sad to see what my child is turning into as a
result of the changes going on inside his head. The home
health & home infusion nurses and pediatrician assure me
that the unpleasant behaviors & attitudes being displayed
by Joshua are not intentional. Apparently, it's not
uncommon for people with brain tumors to have major
personality changes as they approach the end of their lives
and that is what Joshua's situation is being compared to at
this point since there are some similarities. Know what? It
SUCKS! Like it isn't hard enough losing someone we love
inch by inch? Now we have to add negative personality
changes to the mix? It's cruel and it is breaking the hearts
of my family members to pieces.
I don't want our time with Joshua to be marred by him
being... not himself. He has very few chunks of time each
day where he is the child we've known & loved for 7
years. I am worried that my younger kids are going to
remember their brother as a demanding, bratty jerk instead
of the gentle, happy, loving brother they had fun
with. Adam spent some time with Joshua tonight and was
shocked by how much he has changed in the past week,
telling me, "He is not the Joshua I know, Mom. When he
dies, I don't want to remember him like this. I want to
remember the way he used to be."
Adam's words made me cry. I can't stand this. I miss my
sweet little boy. I hate what is happening to him
now. Megan told me she doesn't see God's purpose in
having us go through this. I told her I agreed with her; I
don't understand this at all. Why does a 7 year old become
someone unrecognizable to his family? Why does his
family have to endure sadness upon sadness before the
ultimate blow of death hits? I have no answers tonight; just
an abundance of tears.
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Written June 18, 2013 12:07pm by Kate Parker
Wow, four days have gone by since I've said anything. I
don't know why, exactly. I guess maybe I'm not sure what
to say. Nothing has changed. Joshua is mostly content
when he is awake. He needs his environment to be low-key
& thankfully, his siblings are understanding of that need &
are conscientious about speaking quietly and keeping pretty
calm around their brother. Head pain is adequately
controlled with his hourly dose of IV fentanyl plus a few
breakthrough doses each day. Joshie lays down when his
head is bothering him, which helps to avoid the need for a
lot of extra doses of medication. Two days ago, he asked
me to turn down his tube feed because the rate he was
getting was making his belly hurt. I have tried to not focus
on how 1.5 ounces per hour of fluid is "too much" for his
gut to be comfortable with. I backed him down to 1 ounce
per hour and he's tolerating that without problem.
Overall, the picture with Joshua remains one of very slow,
inexorable decline. We love on him as he is able to tolerate
it & do our best to make him giggle every day. Other than
that, there is not much we can do outside of catering to his
every whim & trying to make sure his environment is kept
as ideal as possible so his head hurts as little as
possible. It's not much, but it's all we're left with. I am
thankful we have what we do.
On a happier subject, Adam & Faith shared with us on
Father's Day that they are expecting a baby (due at the end
of February). Adam knelt beside his little brother's bedside
& quietly shared the news, to which Joshie exclaimed
happily, "Oh yayyyyyy!" He later told us that he thinks
Adam & Faith are going to have a cute cute cute baby girl
and we will need to buy cute baby girl clothes that are as
cute as him. Yes, we all laughed & agreed that we'd have to
do that.
I was so happy to hear the news and learn that I am going
to be a Grandma & I was so happy for Faith & Adam, but
what made me smile the most was realizing the special gift
Adam was given by being able to tell his best friend, his
little brother, this incredibly special news face-to-face. I am
so thankful that God allowed Joshua to be here to share in
his brother's joy. Joshua doesn't understand the concept of
being an uncle, but he knows what babies are & hearing his
happy squeal and Adam's subsequent laugh emanating from
the bedroom told me what a special moment it was for both
of them. I'm thankful Adam will always have the memory
of telling Joshua about Faith & his first child. It will be a
treasured one, for sure.
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Written June 15, 2013 12:02am by Kate Parker
Joshua with the legos sent to
him by sweet Molly & her older sister & mom. :) The
pictures I took of him playing with the assembled set the
next day were all flashed out due to too much sunlight
behind him. I will have to take some more. But this
picture shows his excitement at realizing it was THE set he
had been coveting for months. Super fun to be able to give
it to him!!!
Since increasing his fentanyl dosages this week, Joshua has
needed just 1-2 breakthrough doses per day. He is sleeping
about an hour longer each night/day, but he's comfortable
and happy when he's awake and that is worth losing one
hour per day with him. Overall, he is more quiet now,
which I think is a side effect of the medication, but again,
it's worth what we are gaining from having upped his
doses.
His weight is down 1.5 pounds this week (he gets weighed
every Friday after being deaccessed & prior to his
bath). I'm actually pleased with that because it appears to
be fluid that he has managed to shed. The protein powder
he's getting every day seems to be helping a little bit in the
fight against fluid redistribution in his body. He's still
puffier than he's been ~ for the first time in his life, really,
he looks chubby ~ but he is peeing a lot more volume than
he was a week ago and he says it doesn't hurt him to pee
anymore, which is a huge thing and makes me believe the
protein is helping somewhat (reminder: protein deficiency
causes fluid retention as fluid gets pushed out of blood
vessels and the gut into surrounding tissue).
Tonight, I took Emily, David, Sarah, Isaac, Joshua &
Bethany for a walk. Emily roller bladed, the other kids
walked & I pushed Joshua in his wheelchair while carrying
Bethany on my back in an Ergo. We went to a nearby park
because it is the only one in town that has a handicapaccessible swing and Joshua loves to swing when he is
feeling good. When we got to the park, I was sad to find
the handicap swing had been removed. I don't know what
happened to it. I decided we'd come that far and I wasn't
going to give up just because the swing that would enable
Joshua to swing on his own was gone. I unhooked him
from his feeding pump and carried him with his fentanyl
bag to a regular swing and with Emily's help, I got Joshua
situated sideways on my lap with his right arm around my
neck and his left hand holding the chain of the swing (on
my right side). I wrapped my arms around the chains and
held onto Joshua and then Emily pushed us very gently so
that Joshua could swing. Let me tell ya, it is a challenge to
balance 70 pounds of child & a fentanyl bag on your lap
while swinging! LOL We managed, though, and it was
totally worth the effort involved to hear him
laughing. Emily took a short video if you want to see my
happy boy. After about 5 minutes of swinging, Joshua was
done & ready to go home. I loaded him back into his
wheelchair, got him hooked up once again to his feeding
pump, arranged his tubing so it wouldn't get snagged in the
wheels and then reloaded Bethany onto my back and then
the kids & I headed home. It was a fun little outing and
even though Joshua needed 2 breakthrough doses of
fentanyl while we were out, the fact that he was able to
tolerate going out for even a short time made all of us
ecstatic.
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Written June 12, 2013 12:31am by Kate Parker
Joshua has only needed 1 breakthrough dose tonight, which
is phenomenal improvement from the past 4 days. His head
is not hurting at all. He is very quiet, not hungry & being a
bit snappy if someone asks if he wants something to eat,
but he is sipping some grape juice & contentedly watching
SpongeBob. This may be as good as it gets (time will tell),
but my family & I are thankful because it's so much more
enjoyable to sit beside Joshie & watch a movie than sitting
beside him, watching him struggle when pain was getting
the best of him every night. I owe Dr. S another hug when I
see her ~ I am SO grateful for her willingness to increase
the basal rate of fentanyl just 24 hours after increasing the
breakthrough dosage amount!
Thank you for the prayers and encouragement and
understanding. In addition to prayers for Joshua's physical,
mental & emotional comfort, please add in prayer that we
will be able to avoid constipation. I know that probably
sounds like a funny prayer request, but it's very
genuine. Opioids (narcotics) slow down the intestinal
tract. Combine that with the issues Joshua already has with
his GI tract (slow motility & nerve damage to his bowel
that makes it difficult for him to poop) and you can
understand the potential problem we could encounter. I am
not asking for suggestions or remedies for constipation ~
what we are doing for Joshua works just fine. With each
increase of fentanyl, however, the slowing of his gut
increases & with it comes the increased possibility of
difficulty 'going'. The increase also affects the bladder and
makes urinary retention more likely, so please pray for
Joshua to not have bladder or bowel problems. It would be
lovely if God would allow those two processes to continue
the way they're supposed to all the way up to the end of
Joshua's life. I realize it is not highly likely for me to get
that wish/prayer granted, but God says to make our requests
known to Him, so I figure, why not ask? :)
I'll end this entry on a sweet note... Joshie just hugged my
neck & said, "Thank you." I asked, "For what?" He smiled
big & answered, "You know!" I burped (hey, I just drank
some Coke!), which made Joshie giggle, and I asked,
"Thank you for burping?" He giggled again and rebuked
me, saying "NO! That reeks!" That made me laugh out
loud, which made Joshua burst out with a full-blown laugh,
too. Once we stopped, I asked, "No, really. Thank you for
what, Sweetie?" He looked me in the eye and said very
simply, "For making my head feel better." Then he leaned
forward & kissed me before turning his attention back to
his movie.
And that, my friends, is what I live for
nowadays. Moments that take my breath away because
they are so fleeting & therefore so infinitely special. Thank
you, God, for the glittery sound of Joshua's laughter
tonight. Thank you for quiet giggles. Thank you for warm
arms squeezing my neck & little-boy kisses. Thank you for
hours with no pain. Thank you for time spent cuddling a
relaxed and content child. Thank you for providing a way
for me to connect with people all over the world through
the power of the internet & writing. Thank you for a
palliative care doctor (& her nurse) and a pediatrician (&
her nurse) and a home health nurse & a home infusion
nurse & a pharmacist who are all working together to give
Joshua the best possible life even as he slips closer toward
death.... and thank you that they are determined to give
Joshua the best possible death, as well. Thank you, God,
for the good in each day. And thank you, especially, for
the gift of tonight. It has revived me as a drink of water
would a thirsty woman in a desert and now I feel able to
continue on. Your timing is perfect, Lord. Even though I
still don't understand the "why" of this & I really don't like
where You are having me walk, I thank You for making it
so abundantly clear that I am not walking alone.

Written June 11, 2013 7:20pm by Kate Parker
Super-fast update before I go make dinner & go to the store
to buy more pedialyte...
We increased Joshua's basal dose this afternoon when the
nurse was here. It will take awhile to see how it affects
him, but I am hoping it helps.
He is not eating or drinking much at all. So far today, he
has had one sip of juice and two nibbles of a cocoa puffs
cereal bar. He's still tolerating pedialyte at 1.5 ounces per
hour & he gets protein powder dissolved in water, which
adds 8 ounces of fluid and 130 calories to his daily
total. I'm thankful that his body is "okay" with it.
The nurse and I talked a little about how things are
progressing. The home health team thinks Joshua is going
to slowly move toward the point where he is sleeping pretty
much all the time, waking only to request pain
medication. She explained to me that that is the natural
progression for a person dying with increasing pain. That
makes sense, but once again, understanding something in
my head doesn't make it hurt less in my heart.
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Written June 11, 2013 12:50am by Kate Parker
This was Joshua at 7 pm,
waiting for something to help him feel better (I took the
picture to show Dr. S how he looked since she's currently
out of town but was trying to help me help Joshua). He'd
had 3 bolus doses of fentanyl in the previous hour and he
was STILL hurting. I seriously cannot comprehend pain of
that magnitude. I don't ever WANT to feel that kind of pain
and it causes tremendous grief to see my son endure it on a
daily basis. It also makes me kind of pushy about getting
him what he needs to get OUT of pain.
Dr. S increased Joshua's fentanyl breakthrough dosage
today and it did nothing. My son has had the exact same
kind of day today that he's had for the past 4 days: a few
hours of "good" after waking followed by many hours of
horrid head pain forcing him to lay on the ground, sweaty
& miserable, as I give him breakthrough doses to try and
help him feel better again. Eventually, the medication gets
the pain controlled again and then Joshua is able to sit in
the darkened family room & play a game on the computer
for a bit or lay on the ground & watch a movie before going
to bed for the night. I am desperately trying to get him a
more comfortable existence than this.
He hasn't been interested in eating or drinking much today
(I think it's because of head pain versus it being the 'end of
life not wanting to eat/drink' phenomenon we'll eventually
see happen). I've gotten a cereal bar into him & a cup of
grape juice and that's it. He is getting 1.5 ounce per hour of
pedialyte, too. I bought whey powder so he can get 32
grams of protein per day, which I am hoping will offset the
protein deficiency symptoms we have been seeing (most
obvious being the fluid retention). Today was the third day
he's gotten that. He still receives daily vitamins that are
crushed & put through his g-tube, too. I am not going to be
ready when the day comes where Joshua refuses food &
liquid. I've had a panicky feeling today as I realized he was
not eating or drinking. I knew I couldn't force him to and I
didn't try, but inside, I was shaky. Parents want their
children to eat. It's programmed into us and accepting that
there will come a point when Joshua isn't going to do it is
going to be hard. I realized that today.
It has been a lousy day. It's been one of those days where
you want to run away from everyone and everything
because it's all just so damn HARD and PAINFUL at every
turn. I am worn. I am broken. I am so SAD and that
adjective isn't even right, but I am too tired to try to think
of a more fitting one. I hate this. Watching my little boy as
his condition worsens is brutal and knowing there is
nothing I can do except scramble to try and find things that
might alleviate a symptom here or a complaint there is so
inadequate and leaves me feeling like I am failing him. My
heart aches for the suffering this beautiful child endures
and all I want is to make it go away... to enable him to
smile & enjoy his life. Days like today, when I can't make
that happen, tear me apart.
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Written June 9, 2013 11:54pm by Kate Parker
I know I said yesterday that I would update about medical
stuff today, but it's been another tough day for Joshua and I
have not had time to sit and write anything coherent.
In a nutshell, he's needing a bunch of breakthrough doses of
fentanyl. He lays down a lot because sitting up eventually
makes his head hurt (sometimes very quickly and
sometimes after an hour or two). When a headache hits, it's
extremely difficult to bring his pain back under
control. His pediatrician is out of town, but has been
emailing with me & will be calling in new orders tomorrow
for increasing the fentanyl Joshua can get.
His g-tube pump has been alarming very frequently (6+
times per hour) since the middle of last night. After
troubleshooting everything under the sun & replacing every
element of the system (including the pump, itself, since we
have 3 in our house) and still having alarms going off, I am
certain his mic-key button is not positioned perfectly (I
changed it to a longer one just a few days ago). I
repositioned it a couple hours ago and the alarm has not
gone off since. I am cautiously optimistic that the problem
has been solved. I sure hope it is because to not have the
pump working means Joshua doesn't get fluids, and if
Joshua doesn't get g-tube fluids, he won't live more than a
few days since he drinks less than 18 ounces by mouth in a
24 hour time period. Things are not that dire, but I'm
explaining why having the pump misbehaving for hours &
hours was stressful and not a "little thing". Hopefully,
though, everything will be fine now.
I will share pictures of Joshua playing with his legos
soon. He wasn't feeling well enough to enjoy them for very
long today, but I am hopeful that after we increase his
fentanyl tomorrow, he will once again be able to have
longer stretches of sitting up and playing.
91 people this
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Written June 9, 2013 12:05am by Kate Parker
Thank you to EVERYONE who "liked" my blog
submission on Facebook & shared the link with their
friends and asked them to "like" it, too. The contest is over
& my submission won!!! Woo hoo!!! At the beginning of
the week, I honestly did not believe I had any chance of
winning, so I was shocked & amazed by the 1,328 votes
that my blog post received. THANK YOU for helping to
make this win possible!!!!!
I have to send a letter confirming Joshua's diagnosis, signed
by Dr. S, to the Dare To Hope Foundation, and after they
receive it, they will confirm the win & then send the gift
card. However, thanks to an incredibly generous family
across the country whose 7 year old daughter has chiari &
lives with chronic pain & wanted to use some of her 1st
Communion money to buy Joshua a present (and thanks to
a special friend of mine who provided this generous family
with inside information about what it was Joshua wanted
after she saw the request made in a guestbook comment),
the Monster Fighters Lego set that I had planned to
purchase with the Amazon e-card if my submission won
has been gifted to my little boy and was delivered to the
house by Adam tonight after he got off work.
I will admit that I was very nervous at first when I read the
guestbook comments talking about donating money to
purchase legos for Joshua because my only intention when
I asked people to please "like" my blog submission for the
contest was just that ~ I was not trying to manipulate
anyone into offering to send money for Legos or to buy a
set for Joshua. I am acutely aware that some people use
their blogs to get gifts sent to their sick child and I NEVER
want to be accused of being such a person because that is
not why I write here on caringbridge. That is why I try to
be very careful about how I blog. I had shared what I
wanted to get with the Amazon gift card if I won the
contest only because I had hoped it would make people
want to help me win if they understood that the prize would
benefit Joshua. My friend, Sarah, told me to not worry and
to understand that there are people who truly want to do
something because they care about Joshua & sending Legos
was one way they could show that, and if I had not won &
people had wanted to contribute to buy the set for Joshua, I
could have accepted their offer and anyone who knows me
(from reading here for awhile) would know my heart's
intention. As such, her advice to me was to say, "Thank
you," and to also thank God for the "hugs" that He sends
me through unexpected blessings. Soooooo...... THANK
YOU for offering! Despite my insecurity about people
getting the wrong idea about me if I accept gifts, I DO
sincerely appreciate that people would have banded
together to make sure Joshua got that Lego set he's been
wanting if I hadn't won the contest. I am truly grateful to a
sweet little girl named Molly who wanted to give Joshie a
present because she understands what it is like to live with
a headache every day (please pray for her to be given
relief.... my heart is sad for any child who endures chronic
pain) & to her older sister & mother who sent not only the
Monster Fighters Lego set, but the game "Boggle" for my
other kids to enjoy. As for what the $100 Amazon gift card
will be used for now? Movies. Lots of movies to entertain
a very special little boy who is cared about by so many.
Thank you for helping me win the contest and thank you
for wanting to bless Joshua if I didn't win, too. My heart is
full as I glance up from my laptop and see Joshua smile &
listen to his happy chatter as he watches his big sister
assemble the enormous, 900+ piece Lego set so he can play
with it. Despite Joshua's need for many doses of fentanyl
today (I'll update about medical stuff tomorrow), it has
been a day of blessings. Thanks again to everyone for
voting and showing your support in such a tangible way.
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Written June 7, 2013 10:23pm by Kate Parker
Today has been a tough day for Joshua, but for a different
reason than yesterday.
I had to get him up when the nurse came for the weekly
port de-access/bath/re-access, so that was strike
#1. Waking Joshua before he's ready almost always
ensures more head pain than would otherwise occur.
After he was de-accessed and had his bath and a cuddle
with Mom (my *favorite* time of the week!), the nurse
tried to access his port and could not get blood to come out,
nor could she flush fluid into the vein. After some attempts
to adjust the needle (painful for Joshua), she reluctantly had
to admit defeat & withdraw the needle from Joshie's
chest. Strike #2.
Another attempt was made and the result was the
same. Strike #3. The nurse gave up and called her boss,
requesting that he send an infusion nurse over to try to get
Joshua accessed so that we could get him hooked up to his
pain medication again.
The nurse had to drive 40 minutes to get to our
home. Thankfully, she was able to get Joshua's port
accessed & working properly on the first attempt and the
moment the nurse had his fentanyl running again, Joshua
asked for "lots of meddies" to help his head feel
better. He'd gone 2 hours without anything, so we have had
to do some catching up to get him comfortable again.
I spoke with our palliative care doctor & her nurse this
afternoon while the home health nurse & I were waiting for
the infusion nurse to show up. I asked Dr. G what her
recommendation would be if the next few days are like
yesterday & got parameters for increasing the bolus dose
amounts first, then increasing the basal rate if the increase
in bolus amount isn't adequate. She said we'll adjust the
bolus dose next because our goal is to keep Joshua's
respiration rate at 7-8 breaths per minute and the concern is
that increasing his basal rate would suppress his breathing
more significantly than that. She said that while it's evident
Joshua is winding down, the goal of keeping him happy &
enabling him to do what he is capable of doing for as long
as possible remains.
Dr. G also answered my question of why Joshua is getting
puffier over time. For the first time since he was 17
months old and first got his g-tube, we have to put in a
longer tube because he is experiencing skin breakdown
around the mic-key button due to his belly being swollen
and putting too much pressure against the g-tube. Dr. G
explained that when a person doesn't get enough protein,
their body diverts fluid into tissue. Joshua currently takes
in almost no protein, so the third-spacing now makes sense
to me. I'm going to try to increase the amount of protein he
gets to see if that will help. At this point, the extra fluid
isn't making Joshua uncomfortable, but the extra weight
makes him harder to carry and I really don't want him to
get to where his skin is stretching from fluid retention and
causing him pain. I don't know if it's avoidable, but I'm
going to do what I can and maybe luck will be on our side
with this one issue.
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Written June 6, 2013 8:56pm by Kate Parker
I have been utterly blown away by your response to the
blog contest. Thank you so incredibly, tremendously much
for "liking" my entry and sharing with your friends on
Facebook! The contest isn't over yet (it ends on Saturday at
10pm), but regardless of the outcome, I want everyone to
know that I am so touched by the show of support. Thank
you!!! I'd like to give a big, puffy heart hug to
everyone! You all sure do know how to make a mom feel
loved. :)
Unfortunately, I have to move on to less happy news. As
you may remember, we increased Joshua's fentanyl on
Tuesday. He needed 1 breakthrough dose yesterday during
Emily's birthday party when the kids got rowdy around
him. Thus far today, he's gotten 5 extra doses of pain
medication. His head still hurts, but I am waiting for him to
tell me when he wants more medicine. I can technically
give him meds every 15 minutes, but I wait for Joshua to
ask me to push the button on his pump because there is a
very real risk of respiratory failure if he needs multiple
breakthrough doses in rapid succession, so I want to be
absolutely positive that he wants the extra medication
before I give it... just in case that push ends up being the
dose that stops him from breathing.
I had an, "Is this REALLY happening?" moment this
afternoon as I assessed the options: medicating my child to
try and knock the pain out of his head, but knowing that
giving enough fentanyl to make him pain-free could very
well stop him from breathing OR watching him lay in a
darkened, quiet room with sweat beading his face &
soaking his hair because he was in pain. Ultimately, after
discussing the situation with Charley, I chose to walk a line
between the two scenarios and gave Joshua bolus doses of
fentanyl at longer intervals in-between doses while he laid
in the darkened, quiet room. The result was that he would
sit up for 10-15 minutes before needing to lay down again
for 30-45 minutes. His respiration rate stayed between 810 breaths per minute, though, which was a lot better than
the 5-6 that happened when I gave him 2 doses in 15
minutes' time. If it gets to the point where Joshua requests
"meddies" (that's how he says it) every 15 minutes, I will
choke down my fear and push the button. I don't want to
let fear stop me from doing what is right for my little
man. That said, it's not easy, by any stretch of the
imagination, to be in this place.
Being upright eventually makes his head hurt a lot. He's
still "dopey" from the increase we did on Tuesday (he
typically would be adjusted to a new basal rate by now) and
he's tired all the time. He is eating & drinking less. He's
been having some belly pain when he does eat. I am not
feeling great about where he's at. I had hoped that
increasing the fentanyl would get him back to a better
baseline and I am so sad & disappointed that it didn't.
I'll call Dr. S (pediatrician) tomorrow and I anticipate that
she'll call Dr. G (palliative care) for advice. I don't know if
Joshie will power through this and be okay again or not. At
this point tonight, I really don't know which way this is
going to go. I am not saying that I think he will die tonight
or in the next few days. I just mean that if his pain is
getting out of control and we have to increase the basal rate
again or if he continues needing lots of breakthrough
fentanyl, we might see Joshua being very sedated as a
result, in which case I would guess that the end is near. But
honestly, he may surprise me and wake up tomorrow
feeling a lot better & not needing a bunch of breakthrough
medication, which would lead me to conclude that
whatever happened today was a fluke and not an indicator
that we're on a final downward slide. After all, Joshua has
had other times where he's struggled and then turned it
around, so it could happen this time, too. I won't give up
hoping for more happy times until I know there is no
chance of it happening. And while I am not wanting to
prolong any suffering for my precious son, I absolutely
refuse to do anything to hasten his death, either.

Written June 4, 2013 6:09pm by Kate Parker
Joshua's basal rate of fentanyl ~ the amount he gets every
hour regardless of breakthrough doses ~ was increased
today. When the nurse came over & was evaluating Joshie,
she was surprised to find his respiration rate at 8 breaths
per minute. The highest it got was 12. Whether the
slowness of his breathing was due to the increased fentanyl
or the fact that he had just woken up for the day (at
3:30pm) is yet to be determined. It doesn't matter, though;
we are not going to stop giving medication that is necessary
to keep Joshua out of pain because our only alternative is to
undermedicate him & watch him hurt and lose the ability to
enjoy his life. Not an option. Our goal is to maximize his
quality of life and proper pain management is the
cornerstone of being able to achieve that goal. The potential
side effect of that management ~ respiratory depression to
the point of respiratory failure ~ is not lost on me. The
nurse and I discussed this and ultimately agreed that we
have peace about the decisions being made. That said, the
emotional aspect of knowing that increasing pain
medication could result in Joshua's ceasing to breathe is
challenging. I can know we're doing the right thing but still
feel nervous as I wait & watch to see how his body handles
the increased dose. That's where I am at this afternoon.
His voice is squeakier than it's been and he's tired even
though he has only been awake for an hour, but he is
currently watching SpongeBob with the little kids and his
head isn't hurting and when I just asked how he's feeling,
he answered, "Good." That makes me smile. I can notice
the changes and feel sad for what they represent, but when I
see my little boy smile and listen to him interact with his
brothers & sisters, the happiness outweighs the sad, so I
focus on that. This afternoon, I am thankful for fentanyl &
awesome doctors who know how to get the scale balanced
once again so that we can see smiles from the cutest 7 year
old around.
On a different note, I would like to mention again that I
entered a contest hosted by Dare to Hope Foundation and
the person whose blog submission has the most "likes" by
10pm Saturday evening will win a $100 Amazon gift
card. At this time, my blog post about Joshua is in the lead,
but with 4 days left in the contest, it's way too early to
assume anything. I would very much like to win the gift
card because there is a big "Monster Fighters" Lego set that
Joshua has wanted for months, but I have not been able to
justify spending almost $100 on one set. If I win first prize
in the contest, I will joyfully splurge on my little boy and
surprise him with the Lego set. I don't know who would be
smiling bigger ~ him or me. :)
If you haven't clicked the link and "liked" my submission,
would you please consider doing so now? All you have to
do is be logged into your Facebook account, click on the
link and then click "LIKE" underneath the picture of
Joshua. If you want to, you could also share the link on
your own Facebook wall & ask your friends to vote/like the
submission, too.
If I don't win, it won't be the end of the world. Joshua has
no idea I've entered the contest, so he will not be
disappointed to not get new Legos. But honestly, I'd love
to be able to surprise him. I don't have thousands of
Facebook friends (actually, I have less than 80), so the only
chance I have to win is if I can convince everyone who
cares about Joshua to go to Facebook & "LIKE" my blog
entry & then share with their friends and ask them to "like"
my submission, too. That is why I am bringing this contest
up again here on CaringBridge. I appreciate all of you who
have already clicked the link to help me out ~ thank you
SO much! I'd be very grateful if more of you who read
here would participate, too. LINK to contest
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Written June 2, 2013 10:14pm by Kate Parker
Thank you *so* much to everyone who has voted for my
blog submission & shared it on their own facebook walls. I
am touched ~ truly ~ by the show of support.
Joshua's appointment with the pediatrician went very
well. Dr. S greeted my little guy and told him, "Your mom
said you wanted to come see me and I was happy because I
love to see you, Joshie! Can you tell me why you wanted
to see me?" Joshua answered, "Yes. My head has been
hurting a lot and my leg hurts and I want you to make it
better." Our fantastic Dr. S then took the time to address
each of Joshua's concerns and suggest things that can be
done to make our boy feel more comfortable.
We'll be increasing the basal dose of fentanyl that Joshua
gets each hour, so that should help with his head pain. An
in-depth assessment convinced both Dr. S & me that the leg
pain is coming from Joshua's tethered cord. There's
nothing we can do about that since surgery is not an option
anymore, but we are hoping that increasing the fentanyl
will take the edge off the leg pain. If it doesn't, Dr. S will
call Dr. G in Portland and ask her if Joshua's dose of
gabapentin can safely be increased and we'll see if that
helps.
We discussed Joshua's new disinhibition (lack of a filter in
speaking & his pushing people away at times & the
grouchy/bratty behavior he sometimes exhibits) and how
difficult it is for the other kids in the family to experience
their brother acting so out-of-sorts and mean. Dr. S gave
me an analogy to tell the kids to help them understand a bit
better what is happening inside Joshua's head.
It was a good visit with the doctor and I'm thankful that she
made time to see Joshua today because it made him happy
to be able to talk to her. Sometimes, getting reassurance
from his favorite doctor is what Joshie needs. Dr. S
completely understands that and is always happy to meet
that need. She is a tremendous blessing to my family
This evening, Joshua's head was hurting badly despite 3
breakthrough doses of fentanyl, which led to him being
very testy when anyone got near. He told everyone to
"leave me alone" and "go away," which is so *unlike* him
that it shocked us all. I took my teary-eyed little kids into a
different room and we talked about how Joshua's brain is
misfiring sometimes and how when that happens, he really
isn't himself & he truly has no idea how he's behaving, nor
does he have any control over what comes out of his
mouth. I sympathized, telling them I know it hurts their
feelings when he says unkind things or pushes them
away. I told them that the way Dr. S had explained it to
me, it's kind of like when they are sick or super-duper tired
and a person is talking to them or getting in their face and
they want to push the person away and tell them to be
quiet... or when they have a headache and they don't like
things to be too noisy... well, that's how Joshua is right
now, but where they can control themselves even when
they are tired or feel sick and they don't say mean things to
other people even if they think those things, Joshua can't
control himself anymore because that part of his brain isn't
working right. I explained that when he shoves them away
or tells them he doesn't want to talk to them anymore, he
doesn't actually mean it and I know it's really difficult to
do, but when it happens, we all have to take a deep breath
and tell ourselves, "This isn't the Joshua I know. This is
Joshua's brain misbehaving. He doesn't know what he's
saying and doing." Then I told them that I know it's really
sad that this is happening and I really wish it wasn't
because it's really hard for me to hear Joshua say those
mean things, too.
The kids understood what I was saying and then they talked
to me for awhile about how sad they are that Joshua's brain
is broken (his 9 year old brother's description) and how it
makes them feel like crying because he came home from
the hospital (in April) a completely different kid who
couldn't do much of anything anymore. All I could do as I
listened to them pour out their hearts was hug them, kiss
their cheeks, stroke their hair (as tears leaked from my
eyes, too) and agree with them that this is sad & tell them
how sorry I am that I can't fix this for them & give them
back their brother who could play & run around. I didn't
know what else to say to them. The layers of heartbreak for
Charley & me are numerous at this point. There's our own
pain and then the pain we feel for each of our children and
the pain of knowing there is not a blasted thing we can do
to make this better or protect our kids from hurting so
deeply. It's an agony that defies description.
Thankfully, Joshua went back to being more "himself" just
before his siblings went to bed and while he wasn't up for
hugging them, he cheerfully accepted their hugs and kisses
and he told them he loved them. As a result, all 3 went off
to bed with smiles on their faces, which was something I
silently expressed gratitude to God for. I wish I could keep
them smiling and am sad because it's not possible. People
say that no parent should have to lose their child (and I
agree with that sentiment). I would add that no child
should have to watch their sibling die. This is so hard for
Megan, Adam, Emily, David, Sarah & Isaac (Bethany is
not developmentally old enough to care). It's breaking
Faith's heart, too (Adam's wife). If you think about it,
would you say a prayer for all of them, especially the little
ones who are having to grow up way too quickly with
regards to learning about death?
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Written June 2, 2013 8:36am by Kate Parker
Dare To Hope Foundation is holding a blogging contest for
families who have kids who are chronically ill and/or
medically complex. A person can submit a blog entry that
gives a glimpse into living life with their child. I entered
the contest, submitting the majority of my journal entry
from April 28th to try and win the top prize of a $100
Amazon gift card, which I would use to spoil Joshua. :)
Would you please go to this link and click "like" and then
share this with your friends and ask them to vote for
Joshua's blog submission, too? The contest runs through
next Saturday.
photo.php?fbid=591821740848925&set=a.5918217241822
60.1073741829.118866884811082&type=1&theater
Thank you!
(I will update again later today with information about how
Joshua is doing after I take him to see the pediatrician.)
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Written June 1, 2013 8:39pm by Kate Parker
Joshua has had a tough day today and he's been awake for
only 3.5 hours so far (it's 6:40pm here on the west
coast). He was happily playing on the computer when he
experienced a sudden, severe onset of head pain. Emily
jumped up to press his 'dose' button on the fentanyl pump
while I helped Joshua lay down on the floor. After a few
minutes, he asked if I would take him upstairs so he could
go to bed. Once he was laying in bed, I closed the curtains
and turned on his oxygen concentrator & the fan & hooked
him up to his pulse ox (at his request). His O2 was at 82%,
which explained the gray coloring around his mouth and
nose and would definitely contribute to head pain. After a
few minutes, his oxygen level began rising, but it took a bit
of time to get back into the 90's (percentile). He asked for
more pain medication and I pushed the button, but got
locked out because it hadn't been 15 minutes yet. I waited
another 5 minutes, then was able to give Joshie the extra
dose. He rested in the cool, dark room for another halfhour with me laying by his side, but pain in his right leg
prevented him from actually sleeping. He has been having
pain in that leg ~ specifically the knee region ~ for a few
days, which I believe is due to his spinal cord being stuck
in scar tissue and stretching the nerves. Fentanyl doesn't
help it and Joshua already gets gabapentin for neuropathic
pain in his legs.
My little guy asked if I would take him to see Dr. S. I
asked what he wanted to tell her and he answered, "I want
to tell her that my head is hurting a lot and my leg hurts a
lot and when I stretch it, it hurts for a little bit but then feels
a little better and can she do anything to help me." Dr. S &
I chatted yesterday and she offered to see Joshua on Sunday
if he woke up today and wasn't feeling better, so when he
said he wanted to go see Dr. S, I told him I would email her
to get an appointment set up for tomorrow. I'll take him in
tomorrow afternoon & see if maybe we can increase his
gabapentin or if Dr. S can offer one of her little "tricks"
that, while technically a placebo, help Joshua to feel as
though he's got some control over what is happening in his
body. Yes, I know how awesome our pediatrician is and I
will always have a special place in my heart for her because
of all she has done & continues to do for my sweet boy.
After another half-hour, Joshua was ready to come
downstairs again, but he asked me to please make sure
everyone was really quiet so his head wouldn't hurt and to
please bring him down as fast as I could so that he wouldn't
have to be upright for very long. I complied and got him to
the family room, where he is now laying on the floor with a
pillow under his head, watching "Tangled" with his sisters
& me. His head is feeling better while he's laying down,
but he has insisted that he can't sit up yet because if he
does, his head will hurt again. I assured him that no one
was going to make him sit up if he didn't want to.
I have no real idea what happened to make his head
suddenly hurt like this again, nor any idea if he's going to
feel better in the next day or so and return to what his
baseline has been. This is a day-by-day thing. I'm glad
that with enough fentanyl, the pain can be knocked down to
"easy," though. As a total aside, did I ever tell you that
Joshua's descriptions of pain as "easy," "medium," and
"hard" came from the levels on video games that a player
can choose? I thought that was cute and no, I don't know
what made me suddenly think of sharing that, but I wanted
to make sure I've got it written down so I never forget.
I'll update again tomorrow evening after we see Dr. S and
let you know how Joshua is doing.
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Written May 31, 2013 11:54pm by Kate Parker
I don't know if this is significant at all, but I want to write
about it in case it turns out to be something I look back on
and say, "Ah yes, that was a turning point."
Joshua's personality has taken a dramatic turn from his
norm. I don't mean his "new norm," either; I mean the norm
of his entire life. Over the past 48 hours, he has developed
a bratty side. It isn't constant, but he's having definite
periods of time where he is very unlike "himself". During
those times, he is easily annoyed, acts highly frustrated and
gets very demanding in a negative way. He acts like a brat,
which is a huge shock because that just is not something he
has ever really done. Even when he'd be in the hospital &
would be needy & grumpy, he wasn't a jerk about it. It's
hard to explain, but the change is noticeable to anyone who
comes over.
I talked privately to the nurse today when she was here to
do Joshua's dressing & port needle change and she said that
personality changes can occur with brain dysfunction as
well as being an end-of-life 'landmark'. I told her how, last
night, I asked Joshua what was wrong and he told Megan,
Emily & me, "I don't know what God is waiting for," and
then he prayed, "God, please let me go to heaven
tonight." He prays some variation of that almost every
night, so that wasn't surprising, but he caught me off-guard
when he asked me to "Pray for that, too." I told him I
would pray for him (didn't specify WHAT I would pray
for) and he insisted, "No, pray now." So I swallowed hard,
closed my eyes and prayed, "God, if it is Your will, please
let Joshua go to heaven tonight." I told the nurse how
Joshua wakes up in the morning and seems disappointed
and then irritated that he is still here. She agreed that he
does seem frustrated and sympathized, saying, "Poor boy;
he just wants to be done with all of this."
On the flip side is this little boy who, when he's not grumpy
& acting snotty, is hugging my neck & pulling me to him
so he can kiss me & croon, "I love my mommy. She's the
best mommy in the whole world." He cuddles with me and
says, "I cuggo wis you 'cuz I wuv you sooooo mutz!" Then
he grabs my arm or my hand and kisses it repeatedly with a
loud, "Mwah!" each time. So he goes from being
incredibly bratty & demanding to being so incredibly sweet
& loving. Both ends of the spectrum are taken to the
extreme and that is very different for Joshua.
He has been super tired today, but any suggestions of a rest
have been rebuffed, with Joshie telling us, "I can't go to
bed." When asked why not, he replies, "Something in my
body won't let me. I'm tired, but I can't go to bed." We
haven't pushed it, knowing he will sleep when he wants
to. The effort of being awake while he's tired has left him
sweaty, red-faced and breathing hard, though. It is a lot of
work for him to function when he's tired and his body
shows it.
Thank you for your continued prayers & encouragement.
Thank you for "hanging in there" with my family through
this challenging time. It is hard to explain how mentally
tiring it is to experience "Groundhog Day" (living basically
the same day) over & over & over and not know when it's
going to end, but still not being in a rush to get to that
end. As Dr. S explained it, "We know what the end point
is; we just don't know how long it is going to take to get
there because this dear boy has already surpassed all
expectations." I am genuinely thankful for all of you who
are here because you sincerely care about Joshua, and I am
exceptionally thankful for everyone who makes a point of
leaving supportive comments even if you feel like you don't
know what to say. It really does make a difference & it
helps when I am feeling emotionally worn out.
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Written May 29, 2013 11:39pm by Kate Parker
Joshua is about the same as he's been for the past week,
which is to say he's generally happy when awake, needs
periodic breakthrough doses of fentanyl but can be kept
comfortable with the extra medication, and is still drinking
only grape juice & eating Fruity Pebble bars/the occasional
egg & piece of toast/chocolate chip cookies. Who knew a
child could survive on such a lousy diet, eh? LOL He still
watches movies (SpongeBob is still the leading favorite)
and plays Minecraft on the computer. And that is,
essentially, all there is to say right now because honestly,
that is pretty much every single day for him at this point in
time. Not a lot of variation.
We're just hanging out with him each day and enjoying the
fact that he's still here for us to hug & kiss. He's lingering,
but he's not miserable in this limbo, so that allows us all to
go through each day without a lot of angst (usually), which
is a gift. It's emotionally exhausting, though, which doesn't
leave me with much energy to update here, especially when
there's not much to say because nothing significant has
changed.
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Written May 26, 2013 12:21am by Kate Parker
I was at Charley's work tonight and ran into one of his
employees, who was there with her almost-7 year old son
& 3 month old daughter. I held the baby and that was
sweet, but what struck me was the conversation I had with
the little boy. His speech was so clear. He did a connectthe-dots puzzle, colored a picture, compared two pictures &
circled all the things that were different between them, and
wrote his name, then showed everything to me. He had
gotten a new toy & he handed it to me to inspect and then
he told me all about where he'd gotten it & all the fun
things he had done that day. He was just so darling... so...
perfectly normal. I got choked up and thankfully, his mom
(who knows Joshua well) understood even though I was
surprised by my reaction to the time spent with her son. I
truly did enjoy it, but I guess the contrast between her child
& my sweet boy really hit me hard. Joshua should be doing
all those things... he should be & I hate it that he isn't... that
he can't... that he never will this side of heaven. I hate that
when he finally IS able to do all those things (after he dies,
when he's made perfect in heaven), I won't be there to see
it, and no, it doesn't make me feel any better to know that I
will be able to see it someday since I have no idea when
'someday' is.
I suspect some of my sadness tonight stems from the fact
that my family can't go out together anymore and I really
want us to still be able to. Charley or I can take some of the
kids out to do something fun ~ such as a bike ride or a trip
to the park ~ but we can't go out as a family because Joshua
can't do it anymore and it is breaking something apart
inside me every time I go out with the kids & leave him
behind, ESPECIALLY when it's an activity that he
typically would have been part of. It feels so wrong. It IS
so wrong! This is NOT how it is supposed to be and I hate
hate HATE that I can't take my 7 year old out with his
siblings to do anything anymore. I hate that summer is
coming & Joshua won't be able to go to the river or the
beach or the park and I won't get to teach him how to fish
and I won't get to laugh as he runs through the sprinkler or
watch him ride his bike or roller blade and he won't eat bbq
that his daddy makes or pick veggies from the garden or....
countless other things. I especially hate that he might not
even be here this summer for me to kiss as he watches a
movie or plays Minecraft on the computer.
I am so sad for my children, for the pain they have felt as
they've watched their brother slide inexorably downhill. I
have held each of them as they cried & shared their broken
hearts, fears & anger with me. I have agreed with them that
this is awful & unfair. When they ask why God is doing
this, I have told them that God sees the whole picture and
all we have is this one puzzle piece that we know fits into
the picture somewhere, somehow, but from our perspective,
this puzzle piece is ugly & misshapen because how could
having their brother so sick & dying look any other way to
us... but God has a plan and because He sees the entire
picture, He knows that our puzzle piece is going to fit in
such a way that when we stand beside Him in heaven and
see what He sees, the beauty & perfection of the puzzle that
He put together will amaze us. I assure my children that
knowing God has a plan and trusting that He's good
through all of this pain does not mean we never cry or get
angry or wish this wasn't happening. I remind them that
Jesus cried in the garden the night before he was killed. He
knew what was coming and He REALLY didn't want to
have to do it. He begged God to not make Him do it... to
let there be a different way... and He cried.. and heck, Jesus
knew that he'd be back with His Father in 3 days! So it's
okay that we are here doing the same thing. God
understands our pain. He understands our anger. He
understands our feelings that this is unfair and He
understands our fears. He knows how much we will miss
Joshua and He knows that it is hard for us to not know how
long it will be before we see Joshua again. He gets it. And
my kids tell me that while knowing all of that makes them
feel a little better (comforted), it doesn't make them stop
feeling sad inside. I hug them tight and whisper that I
understand because I feel exactly the same way.
We all try to focus on what Joshua CAN still do, but each
loss hits hard and realizing that he can't go on all of our
usual spring & summer outings is a tough blow. My kids
miss their brother's presence and I can't believe that I'm
expected to go out & smile & laugh & have a good time
while one of my kids who SHOULD be with us is at home
because he's physically unable to participate in outdoor
activities anymore and he can't tolerate the light of the sun
or the noise outside. It gives me a taste of what is coming
when Joshua is gone & I can tell you right now, it's
horrible.
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Written May 24, 2013 8:32pm by Kate Parker
Today was what Joshua calls "Poke Day". Every Friday,
the home infusion nurse comes over to de-access Joshua's
port (remove the needle from his chest) and re-access it
with a fresh needle. Before he is re-accessed, Joshie is
carried to the bathroom, free from all tubes, and given a full
immersion bath. It's one of his favorite activities each
week. He loves the warm water and he laughs as his hair is
washed & he gets all clean. Afterward, he is wrapped in
two fluffy towels and carried back to where the nurse is so
we can get his port re-accessed & his fentanyl hooked up
and going again. Getting re-accessed is the "poke" Joshua
named the day for. He does not enjoy the needle change,
but thanks to the compassion of the nurse allowing him to
dictate how & when she accesses him (he asks her to count
to 3 "cwo-wee" ~ slowly ~ and to wait until he closes his
eyes and she complies), Joshua is handling "Poke Day"
much better than he used to. I am very proud of him. As
always, he makes the best of every situation, even the scary
& painful ones.
After he was re-accessed today, Joshua requested some
fentanyl due to head pain. It took a bit longer than usual to
get him feeling comfortable again, but he eventually was
feeling good enough to play a game on the computer. What
has struck me as different today is how sleepy he has been
all afternoon & into early evening. It's not related to his
medication; I am certain of it. This is different, but I can't
exactly put my finger on what is going on. He's just a bit
off what is his "normal". I suppose time will tell if this is
significant or not.
Interestingly, Joshua's weight is up 2 pounds this week
(he's 72.6 lbs). We weigh him every Friday and he's been
losing, on average, 1 pound per week. He hasn't suddenly
begun eating and drinking a typical amount, but we have
noticed that he felt heavier over the past few days and he's
also looking puffy in his face & belly, so perhaps he is
retaining fluid and that is why we saw the weight gain. I
don't know if this is a typical "end of life" thing or not, but
I guess it doesn't really matter. It's just something I'm
making note of.
He's been very sweet & lovey today. While the nurse was
here, Joshie kept grabbing my hand & kissing it repeatedly,
telling anyone who was listening, "I love my mommy so,
so much!" He would hug my neck and kiss my cheek &
the tip of my nose and I would kiss & hug him in return,
breathing deeply of his little-boy scent before speaking the
words I tell him every chance I get: "I love you,
Dawa. You're my best good boy." He loves to be told
that... Dr. S was the person who first used that phrase ~ best
good boy ~ and I thought it was perfect for describing
Joshua, so I adopted it as my own. When I tell him he's my
best good boy, if he's feeling well, Joshua will grin & say,
"Yes, yes I am!" If he's feeling poorly, he won't speak, but
he'll nod his head in agreement. It's one of those special
"things" we have & I love it.
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
Written May 23, 2013 2:58pm by Kate Parker
Joshua is hanging in. He's not "good" but he's also not
"bad". I guess I can just summarize by saying he's
stable. He's not in pain, he's tolerating 40ml/hr of fluid
through his g-tube (that's 32 ounces per day) and he eats
some food every day. He watches movies and sometimes
plays with legos. It's not a lot, but he's content.
Despite losing about a pound each week, his belly remains
puffy and that has caused pressure on the skin surrounding
his mic-key button (g-tube). The skin won't heal, so Dr. S
ordered a longer button and as soon as it gets delivered, I'll
remove the mic-key currently in use and replace it with the
longer one. Hopefully, that will enable the pressure to be
relieved and the skin can then heal.
Each night, Joshua prays that God will make him stop
breathing so he can go to heaven. Each day when he wakes
again, he has a moment of disappointment, then shrugs &
says, "Only God can decide when I stop breathing," and
then he goes on with his day. He still talks every day about
how he wants to go to heaven and how he "hopes it will be
today." I have to tell him I don't know when God will let
him go to heaven and when he asks, "Do you hope it will
be today (because that is what he is hoping for)," I have to
answer as though it doesn't break my heart, "I hope you
will get what you want, Joshie."
I am weary of this emotional roller coaster. I don't know
what God is waiting for. We thought Joshua was hanging
on for the wedding ~ it sure seemed that was the case ~ and
he was so incredibly adamant that he wanted to go to
heaven days after the wedding. I didn't think it was
possible he'd still be sitting here watching SpongeBob as
we head toward the end of May, especially after TPN was
discontinued. I'm not unhappy that Joshua is still alive ~
please do not misunderstand or misinterpret what I am
saying!!! The honest truth is that it is HARD to prepare
yourself to lose someone you love and then have them keep
hanging on long past the point anyone thought was
possible. You keep waiting and wondering and holding
your breath and then something happens and you think,
"Okay, this is it," and then the loved one bounces back and
while you're relieved, you recognize that you will have to
go through that "this is it" moment again and you start to
feel like this child is "crying wolf" and maybe he isn't
going to die after all because it hasn't happened yet and
everyone (including you) thought it would have by
now. And THEN you beat yourself up for even thinking
thoughts like that because what is wrong with you? What
kind of mother gets tired of waiting for her child to
die? Oh, you realize that isn't it ~ it's not like you ever
WANT your child to die ~ but living in limbo, not able to
do anything or plan anything because you have no idea
when this completely-life-altering event is going to occur is
insanely hard, especially when it's been going on for years,
and you wonder if you're being selfish and then you hate
yourself some more. And, having shared all of this, I know
that there will be some jerk who will throw this entry back
in my face when the day comes that Joshua IS gone and I
am missing him and wishing I could have one more day
with him because that jerk will not be able to understand
anything that I am describing and they won't even try;
instead, they'll say, "Well, you couldn't wait for him to die,
so maybe you should have enjoyed him while he was
alive." What that jerk won't understand is that this isn't
about loving my child or being thankful for the time I have
with him or being able to enjoy him while he is alive or
being selfish. It is about anticipatory grief and knowing
something awful is heading my way and the exhaustion that
comes with waiting for it to happen but not knowing when
it will.
Imagine you are sitting in a dentist's chair and you're
waiting to get your mouth numbed. The dentist sits down,
grabs the syringe and pulls your lip away from your
teeth. You close your eyes and wait for the sting of the
needle, but it doesn't come. You KNOW it's coming,
though, so you don't open your eyes and you actually tense
up even more because the awful anticipation is made worse
by the fact that you are being made to wait for the pain
rather than just getting it done & over with. Finally, you
peek open your eyes and are shocked to see the dentist
sitting, holding the syringe in hand while he watches a
scene of the movie that is playing on the wall (as a
distraction for you, the patient). He sees you looking at
him and says, "Oh sorry, let's get to it!" And you once
again close your eyes and wait for the shot. Now imagine
that the shot doesn't come again, for whatever reason. And
just as you start relaxing and even thinking that maybe you
won't need a shot after all, the dentist tells you to open so
he can "numb up that tooth". Imagine how stressed you
would feel at the end of such an appointment. That is kind
of how I feel now. I don't WANT Joshua to die, but I know
it's coming and after 2 years of anticipating it (not in a
happy, "Ooh, this is gonna be so great and I can't wait for it
to happen!" way) and several times of believing, "Okay,
this is it," I am emotionally worn out and wondering when
this awful thing is going to happen. I am wondering how
long it is going to take Joshua to deteriorate to the point
where he actually stops breathing, but not because I'm
looking forward to it happening. I am realizing that the
doctors really don't have any idea of a timeline and that I
can't rely on Joshua to give me a clue because he doesn't
have any insider information like he thought he did (though
I do believe everything he's said about what the angels told
him ~ it's not like God or the angels told Joshua he would
go to heaven right after the wedding; that was obviously
Joshua's desire and not God's plan). I do not want to live a
life without my son. I try to enjoy each day with him as
though it will be the last one I get to have. I also wonder
what is going on and when God is going to take him
Home. Again, not because I'm looking forward to it, but
because anticipating a painful event is exhausting, and even
though I know it's going to be so incredibly horrible to live
without Joshua, it's a different kind of horrible to live in
limbo the way we've been for so long.

Written May 21, 2013 3:49pm by Kate Parker
The care conference yesterday began with Dr. S giving a
synopsis of Joshua's life in order to bring the new members
of the team "up to speed". The goal was to give these new
people an understanding of Joshua (in less than 2 hours)
that took Dr. S & me 7 years to achieve. After reading a
few comments from yesterday's journal entry, I am thinking
I need to share what Dr. S told the home health & home
infusion directors in order to get everyone reading here to a
similar place of understanding.
Dr. S started the meeting by explaining that Joshua had
been born with spina bifida and that was treated & no one
anticipated it would be a big deal. Then time went on & we
learned about the chiari & then he was needing surgery for
the chiari & to detether his spinal cord over & over again
and no one was sure exactly WHY that was
happening. Then, when he was about 2.5 years old, the
neurosurgeon came out of a surgery convinced there was
something wrong with Joshua's brain stem and she advised
Mom (me) to take Joshua to see the geneticist, who did
testing because we all knew there was more going on than
just the chiari. The geneticist eventually found that Joshua
had a rare chromosome abnormality and that was causing
his brain stem to deteriorate and that abnormality would
eventually lead to Joshua's death because the brain stem
would stop working and he would stop breathing.
All of Joshua's life, surgery was the only effective
treatment to get Joshua's brain moved away from his brain
stem. It is BECAUSE he had surgery over & over again
that he has lived as long as he has. Unfortunately, by the
end of 2011, Joshua's brain stem had deteriorated to the
point that the neurosurgeon said it felt like mush when she
was inside his head. She knew with absolute certainty that
attempting another surgery ever again would kill Joshua, so
she had to break the news that surgery was no longer an
option for treating Joshua.
Let me reiterate here because it is really important that this
be understood: surgery was the ONLY treatment option
that made ANY difference in Joshua's survival because
surgery allowed the neurosurgeon to remove pressure from
Joshie's brain stem. Having a chiari malformation is NOT
what is killing Joshua. Having chiari is actually what
HELPED Joshua because if he hadn't had chiari, Dr. W
would not have done surgery and the pressure of his
cerebellum against his brain stem would have resulted in
his dying by the time he was 2 years old, just like every
other child who has ever had the same chromosome
abnormality. I'm thankful for Joshua having chiari because
God used it to keep him alive for 5 years longer than he
would have lived otherwise. But still, once surgery was no
longer an option due to the degraded state of Joshua's brain
stem, we were pushed into new territory: palliative care.
Palliative care seeks to manage pain in such a way that a
person's quality of life is maximized, not prolonged. In
other words, once we knew we could never do surgery
again, no matter what, our goal shifted to wanting to give
Joshua the best quality of life that we could for as long as
we could, using medication to "protect" him from the pain
and thus make it possible for him to enjoy his days.
Have you ever seen a child in extreme pain? When they
hurt, they sit still, unmoving, guarded. But remove the pain
and they go back to running, playing and laughing, even if
the cause of the pain has not been eliminated. When Joshua
hurts and the pain is not adequately treated, he sleeps
excessively (as an escape), cries, lays down & doesn't want
to move. When he is protected from the pain in his head,
he stays awake, laughs, jokes, plays. He used to ride a
trike, run & climb & swing at the playground and engage in
other, age-appropriate and typical activities. As his brain
stem has continued to deteriorate, he has lost abilities &
skills and there is no way to regain those. His pain has also
increased along with his tolerance (which happens when a
person is on narcotics long-term), which has resulted in the
need for higher doses of stronger pain medications. And
increased doses of pain medication bring with them the
potential for side effects like respiratory & cardiac
depression ~ making a person breathe slower and their
heart beat more slowly.
We have no more surgical options for Joshua ~ we haven't
since the end of 2011. All that is left is to keep him
comfortable and as pain-free as possible so that he can
enjoy however much time God deems he has left. If he
gets into a crisis situation where regular bolus doses of
fentanyl are not enough to make him comfortable, the
ONLY options we have at that moment are to give extra
medication OR do nothing & let Joshua suffer. Doing
nothing isn't really an option, though, so that leaves giving
more medication as the only thing we can do. And one risk
of that choice is the possibility it could make Joshua stop
breathing. But when we consider the alternative, the risk is
one we're willing to accept for this little boy who has a
terminal condition and is going to die because of it.
NO ONE is trying to make Joshua die faster. NO ONE is
assisting his death. NO ONE is giving pain medication
with nefarious intentions. I pray almost every day that God
will NOT let Joshua die from the side effects of narcotic
administration. I don't want my son to die from anything
other than his brain stem ceasing to function. That said, IF
he gets into a pain crisis, I WILL give him the medication
he needs to protect him from that pain and doing so would
NOT be assisted suicide because the intention in giving
pain medication is NOT to end his life... it is to alleviate
suffering so intense that I have never been able to string
words together that are adequate for expressing just how
BAD it is. In the opinion of my entire family & all of the
medical professionals involved with Joshua's care, the only
thing worse than Joshua dying would be for him to die
while suffering from pain that we had the power to
alleviate.
Being able to accept that my child is going to die and the
possibility that he will need pain medication in a quantity
that could suppress his breathing when he reaches the end
of his life is NOT assisting in his death. He is not choosing
to kill himself. I am not choosing to kill him! His medical
team is not doing anything to hasten his death. I have
fought as hard as I can to keep him alive! What we are
doing now is recognizing where this train that we're on is
heading & getting prepared for the scenarios that we might
encounter when we start flying off the tracks at the point
where the bridge is out. We know Joshua's death is
coming. We do not know how or when it will happen. As
such, Joshua's medical team wants to make sure we are all
prepared for every contingency they can think of. I chose
to share just one of those contingencies in my journal entry
last night, but that does not mean that respiratory
suppression from fentanyl is definitely going to be the
cause of Joshua's death. The fact is, even if Joshua does
end up dying after receiving a dose of fentanyl, it won't be
the fentanyl that killed him ~ it would be his BRAIN
STEM that deteriorated & caused enormous pain &
disability that forced us to give adequate pain medication to
make Joshua comfortable that would be the true culprit. We
would not be giving Joshua fentanyl if he did not have a
terminal condition necessitating the use of pain
medication. It has been a process driven by a progressive
deteriorating medical condition that has gotten us to where
we are with Joshua. We are simply doing our best to keep
him comfortable so that he can continue to enjoy what he is
able to do for as long as he is able to do it.
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Written May 21, 2013 12:31am by Kate Parker
I attended a care conference today that consisted of myself,
our pediatrician, her nurse, the heads of home infusion &
home health & the nurse's supervisor (Emily stayed at the
hospital with Bethany while I was at the meeting). It was
emotionally draining, but I think they finally have an
understanding of Joshua & where he's been & where he's
going, so it was a good meeting to have. Listening to Dr. S
detail how Joshua's brain is herniating out of his skull &
how the neurosurgeon has literally cut away white matter
from my son's brain multiple times in order to keep him
alive but now there are no more surgical options, so all we
can do is keep him comfortable while we wait for his brain
stem to get compressed to the point he stops breathing was
incredibly difficult. I understood why Dr. S had to spell it
all out so specifically for the other members attending the
meeting (we NEEDED them to truly "get it" because up
until now, they hadn't really understood Joshua's medical
complexity), but that didn't make it less breathtaking (in a
bad way) for me to hear.
I shared MRI pictures showing the same areas of Joshua's
brain stem and spinal cord from 2008 and 2012 to give a
visual understanding of how his brain stem has deteriorated
and become kinked over time & to show how his spinal
cord has gotten displaced within the spinal canal by the
lipoma that continues to grow despite being removed over
& over by Dr. W's surgeries and the scar tissue that
Joshua's body overproduces. I also shared pictures & video
from 6 weeks ago when Joshua was walking around
outside, playing with his siblings & friends & talking more
clearly than he does now so the others could appreciate just
how much he's lost in such a short time. That was another
hard part for me... seeing how recently he was able to do so
much more than he does now and wishing I could turn back
the clock.
The head of home infusion wanted to know what Dr. S
would want them to do in the event of a pain crisis ~ if I
call in the middle of the night saying I am giving Joshua
bolus dose after bolus dose, but it's not enough to get him
out of pain, what does she want them to tell me? After
some discussion, it was decided that if a pain crisis occurs
~ defined by the administration of 4 bolus doses over the
course of an hour ~ I will be given the code to give an extra
dose of fentanyl every 5 minutes until Joshua is
comfortable again. The home infusion guy was visibly
stressed about the reality that if that scenario occurs, giving
extra doses every 5 minutes could lead to respiratory
failure, but when I asked him what was the alternative ~ to
let Joshua be in horrible pain because we were afraid to
give him too much medication? ~ he swallowed hard &
agreed that withholding adequate pain medication wouldn't
a compassionate action. It's hard because these
professionals are not accustomed to taking care of a dying
child. I am very appreciative of the fact that they are
willing to step outside their comfort zone and provide
Joshua with the services he needs to be able to die at home
rather than in a hospital.
Dr. S told everyone how Dr. G, a pediatric palliative care &
pain management specialist, is calling the shots regarding
pain meds and their dosages, and she made sure everyone
attending (aside from me) understood that she, her nurse &
I have been riding this train with Joshua for 7 years and
they are all just getting on-board at the very end, so we
don't need them to come in & try to make ANY
changes. All we need is for them to support what is already
in place. She looked at the home health and home infusion
people & told them, essentially, "You all will be in this
child's life a very short time. You will come & go pretty
quickly. My nurse & I have known him since the day he
was born, but we are still just his doctor & nurse. This
mother, however, has a relationship with Joshua that will
go on forever because he is her son. She is going to
remember every single event surrounding the time leading
up to her child's death until the day she dies because she is
his mother. It is our job to do everything we can to support
this mother & her family & ensure that her memories are as
peaceful as they possibly can be. And the way we do that
is by making sure Joshua is pain-free and
comfortable." She looked around the room at each person,
then added, "Kate has made and continues to make good,
compassionate, caring, loving choices for Joshua." I
listened to her speech & had to bite the inside of my cheek
to keep myself from crying. Listening to Dr. S advocate
for Joshua & me was gratifying. There is something
incredibly comforting about knowing with certainty that
someone is committed to walking a road with you, no
matter what comes along, and I am so grateful to have the
support of our pediatrician, a woman who is emotionally
invested in my little boy & has made it clear she will do
everything possible within her power to help me make his
passing from this world to heaven gentle & pain-free &
peaceful. I could not ask for anything more.
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Written May 19, 2013 7:38pm by Kate Parker
Joshua remains stable, with excellent pain control. He is
not as talkative & today, he hasn't been as interested in
eating or drinking as he usually is. On the plus side of the
equation, he sat & played with legos for about an hour and
he used a small, plastic, hand-held magnifying glass to
examine a snake that Megan caught in the yard & brought
into the house to show her baby brother. That brought
multiple smiles and even a couple giggles, which were
sweet to hear.
Joshie is tired. Not sleepy, on-narcotics tired, but worn
out. We can see it when we look at him. We can hear it in
his voice. He continues to make the best of everything
because that's just what he does in every situation, but the
difference in his countenance is hard to ignore.
Adam made this video in August, 2011, when no one
thought Joshua would live to see 2012 (and as we know, he
wouldn't have if Dr. W, our wonderful neurosurgeon, hadn't
done 3 final surgeries in November, 2011) and it's been a
song that has been playing in my head lately when I look at
Joshua. Despite everything he endures (past & present), he
still finds a way to smile. He is so brave & strong & he
makes me want to live better... to be the kind of person God
is pleased with... if for no other reason than because I have
been given the opportunity to do so.
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
Written May 17, 2013 1:08am by Kate Parker
With the hospice snafu behind us, there are now new decisions
to be made as we move forward with figuring out what is the
best road to take for Joshua. It was predicted that he would not
live more than a couple of weeks after we stopped TPN almost 2
weeks ago, yet he isn't giving any indication that he is about to
die. While he is eating & drinking less than optimal amounts, it
is enough to keep him going with only a slow weight loss. I am
requesting prayer for WISDOM as Dr. S speaks with Dr. G
tomorrow (Dr. G is the palliative care doc in Portland) to get
advice before she (Dr. S) and I sit down with home health &
home infusion for a meeting next week to lay out our plans &
hopes for Joshua. As Dr. S put it in one of her emails we
exchanged tonight, "We need guidance during this hard time."
Joshua is comfortable ~ not having head pain at all, thanks to
Dr. G's expert titration of his fentanyl to the perfect level ~ and
he is content. His activity level is substantially less than it was a
month ago & his frequency of apnea & other brainstem-related
symptoms have substantially increased. We see him
deteriorating, but it's very slow overall. Joshua says he wants to
go to heaven now, but only God can make him stop breathing,
so he doesn't know when he will get to go. As the weeks go by,
he "lives" less & "exists" more. It's sad to watch this happen to
him, but there isn't anything we can do to stop the process &
there isn't anything we are going to do to speed it up because...
duh... no one is in any rush to say, 'Goodbye' to the little boy we
love so much

Written May 16, 2013 1:36am by Kate Parker
As promised, here are some pictures from Adam & Faith's
wedding. I included several sweet pictures of Joshua. He
was *such* a precious little 'ween dye'. We had placed the
rings inside a velvet drawstring pouch to prevent them from
being dropped or lost, and even though we'd rehearsed how
he was supposed to do his job, when the time came that the
minister asked for Faith's ring, Joshua smiled as he handed
her the entire pouch and said in a cheerful voice, "Here you
go!" Everyone laughed & Adam immediately turned to his
baby brother & said, "You just need to give her Faith's ring,
remember," as he handed the pouch back. Joshua grabbed
the drawstring but needed some help getting the pouch
opened, so Adam assisted with that step. After that, Joshie
knew what to do & things got back on track. We all just
smiled throughout the whole scene because it was cute &
Joshua was so earnest in handing over the rings.
I hope you enjoy seeing photos from Adam & Faith's
special day. Thank you, again, for all of your prayers,
well-wishes & support!
http://s1309.photobucket.com/user/kpmomof8/library/Ada
m%20and%20Faiths%20Wedding
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Written May 14, 2013 7:05pm by Kate Parker
Joshua was KICKED OFF hospice today because the
hospice medical director had planned to come to my house
to meet Joshua and I had to cancel that appointment in
order to take Bethany to see the pediatrician & get her
admitted to the hospital. Nope, I am not kidding one iota.
The hospice medical director called our pediatrician & said
that since she is not being allowed to see Joshua, she's
kicking him off hospice. No one said she isn't allowed to
see Joshua. Charley had called hospice yesterday (as soon
as we learned I would have to take Bethany to see Dr. S) to
give the message that I had to take our medically-fragile
daughter to the doctor and would not be at home to meet
with the doctor at 10am; as such, we would need to
reschedule. When Dr. S heard the medical director say she
was kicking Joshua out of hospice, she (Dr. S) told the
doctor, "That's fine. I'll be seeing Mom at 11am when she
brings in her extremely-sick little girl, so I'll let her know."
So she corroborated my "story" (which was the absolute
truth, anyway) to the hospice doctor, but the reason for
canceling the appointment wasn't acceptable to the doctor
& she kicked him out. Think there's a medical director who
has some ego issues??? I do!!!
I'm incredibly relieved to be done with hospice,
actually. The organization is not accustomed to caring for
dying children & both Dr. S and I were frustrated with their
attempts to jump on the train we've been riding for 7 years
& tell us that we were doing everything wrong, giving
Joshua the wrong medications, and that he wasn't actually
in pain ~ it was just anxiety. You'd think that a hospice
organization that gets just 1 kid every 3-5 years & has zero
experience with a child who has a chronic, deteriorating
illness would look at Joshua and realize they don't have a
clue and would therefore LISTEN to the experts ~ that'd be
me & Dr. S, Dr. W & Dr. G ~ and they would get on-board
with what we are doing for him. Unfortunately, that did
not happen. The good news is that we'll revert back to
home infusion + home health and now I can go back to
focusing on my child with the confidence that the medical
professionals who care about him & KNOW him are
making the decisions rather than the incompetent people
who were supposed to be making this time easier, but
instead were creating stress galore for my family.
118 people this

Written May 12, 2013 11:54pm by Kate Parker
(Entry 2 of 2 for 5/12)
The difficulty urinating & pain returned this afternoon. I
contacted Dr. S & she called her office to have a nurse fax
orders for a urinalysis & culture to be done at the
hospital. I obtained a clean catch sample & dropped it off
at the lab. The result showed no infection. Everything
looked normal. While that's good, obviously, it means the
pain Joshua is experiencing is most likely that of bladder
spasms being triggered by his brain "misfiring" and sending
messages to the nerves of his bladder to contract repeatedly
rather than in a smooth motion like it's supposed to (further
physical evidence of the deterioration that is occurring
inside his little head). Placing a hand on his lower
abdomen while he's trying to pee allows one to feel the
ripples of erratic bladder contractions. It's no wonder
Joshua hurts & is having trouble going.
Dr. S will be faxing a prescription for Ditropan
(oxybutynin) to the pharmacy first thing tomorrow
morning. In the meantime, I have Lorazepam (Ativan) onhand and with Dr. S's permission, I gave Joshua a dose of
that this evening. It's the first time he's had a sedative at
home & the effect has been a bit comical. He's slow with
his speech & response time and he is *very* relaxed. It's
helped him to urinate without as much pain, too, which is
why I gave it to him. I wouldn't want to have to give him
this kind of medication very often, but I'm thankful to have
it for times when it's necessary.
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Written May 12, 2013 1:00pm by Kate Parker
(Entry 1 of 2 for 5/12)
Joshua is still with us.
He woke at 7:30am after peeing & excitedly told me, "It
didn't hurt to pee!" He went back to sleep after I changed
him & got him into a dry shirt, but before he did, I asked,
"Does this mean you don't want to go to heaven yet?" He
answered, "I still want to go, but God knows when it's
time. I thought it was time yesterday. I guess I was wrong.
But God made it so I can pee and it doesn't hurt, so
everything is normal again!"
I am thinking that while Joshua IS ready to go to heaven &
definitely wants to go (who can blame him?), yesterday's
begging to stop breathing was the result of uncontrolled
pain caused by his bladder hurting him so terribly. I think
he didn't know what else to do but beg God to take him to
heaven, where he knows nothing will hurt ever again.
While my family & I are sooooooo relieved to have Joshua
still with us today, we will continue to pray for God to give
Joshie the desire of his heart. Yesterday showed me that we
are all as ready as we'll ever be for Joshua to leave us for
heaven and as such, I'm not fearful anymore. I will never
WANT Joshua to leave us, but the peace that filled my
house yesterday & last night, especially, has made me
certain that when the angels do come to take Joshua Home,
God's Spirit will be here to make it possible for us to let
him go.
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Written May 12, 2013 2:21am by Kate Parker
(Entry 3 of 3 for 5/11)
Joshua is laying in bed with me beside him. He has been
talking about all the things he remembers from our various
hospital stays. Things from when he was 2 & 3 years old.
At one point, he stared directly into my eyes and told me,
"You have been a good mommy. You always did your best
for me." Then he prayed that God would make him stop
breathing tonight while he sleeps, but if he can't stop
breathing, would God make it so it doesn't hurt to pee
tomorrow." Then he closed his eyes and gave me one more
kiss before singing quietly, "Mommy mommy mommy, I
love my mommy." I kissed him again & whispered, "I love
you and I will either see you in the morning or I'll see you
in heaven, okay?" He nodded slightly and breathed,
"Okay."
I could not love this child more than I do this very minute.
I have NO idea if Joshua is going to die tonight or next
week or next month and I am not trying to get people
worried. It is important to me to write down the things he
is saying, though, in case God grants his request tonight. I
don't want to forget any of this & I don't want to have to
worry that I didn't remember it correctly, which is why I'm
jotting it all down right now.
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Written May 12, 2013 12:54am by Kate Parker
(Entry 2 of 3 for 5/11)
We had a weird experience a few hours ago. Joshua was
flailing around, trying to get comfortable, when he
suddenly calmed down & announced that he wanted to go
to heaven now. He said it over & over & over. I assured
him he could go... it was okay... and he asked me to tell
everybody that we were going to heaven now. All of the
kids came over one by one & Joshua told each of them,
"We're going to heaven now." They were all incredibly
calm & lovely & truly just amazing with him... they told
him things like, "Okay. I'll go pack your Cuddle-up-it &
Crocky (stuffed animals) & I'll carry Perry (the Platypus)
since he gets scared on long trips." They hugged & kissed
him & told him good night. Joshie told Charley, "We're
going to heaven now, Daddy," and Charley hugged &
kissed him and said, "Good. I'm so happy. I want to go to
heaven with you. I'll see you there." That almost made me
cry, but I held it together. Joshie grabbed my hand and then
he announced, "Okay, everybody stop breathing." The
adults looked at each other like, "WHAT?!?" After a
minute, with his oxygen level going down & his heart rate
shooting up, Joshua said, "This is hard" (to stop breathing).
Megan busted up laughing & then we all kind of chuckled
with relief & worry.
Joshua has insisted he still wants to go to heaven now. I
have no doubt that he does. He has had a lot of pain today
with urine retention & bladder spasms. I thought maybe he
had a UTI or bladder infection, but now I am pretty sure it's
bladder spasms versus an infection of any sort. I'm not sure
what we're going to do about that, but I will hear back from
Dr. S soon.
Please pray that God would give Joshua the desire of his
heart. It is beyond difficult to watch him hurting & to not
be able to alleviate it in any meaningful way. He has fought
long & hard. If he truly wants to go to heaven (and God
knows the answer to this), our prayer is that he would be
granted the desire of his heart. I can't beg to keep him
here... not when he is clearly suffering in ways that we can't
fix & he is praying repeatedly throughout the day, "God,
please let me go to heaven now. Amen."
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Written May 11, 2013 5:22pm by Kate Parker
(Entry 1 of 3 for 5/11)
Time marches on & our days have fallen into a loose
pattern with regards to Joshua. He continues to show signs
of deterioration, but instead of the fast end that his doctors
thought would happen when he was removed from TPN,
Joshie is once again doing things his own way & taking the
scenic route as he gets ready to depart from this
world. Though it leaves everyone hanging & kind of
holding our breath at times, we are always thankful to have
gotten one more day with our Joshiebear.
He is still sleeping about 15 hours every day. He gets 12
ounces per day of formula through his g-tube and he drinks
up to about 16 ounces of grape juice. He still eats, but not
as much as before. Interestingly, he is not going into
"vomit universe," which has *always* happened
throughout his life when he got even slightly fluiddepleted. That leads us to suspect he's got some
"shutdown" going on, but we know that is to be
expected. He hasn't played on the Wii in the past 4 days
(today will be day 5). He hasn't played on his iPad,
either. He sits at the computer & either plays a game or
watches movies. That is pretty much the extent of his
activity now. Cuddling is difficult for him because he finds
it hard to get comfortable. That's been hard for me to get
used to, but I console myself with being able to snuggle my
boy when he's asleep. He has increasing apnea, coughing,
choking on anything from food to saliva, and he's always
tired. His pain is very well-controlled today. It was wellcontrolled yesterday, too. The day before required some
tweaking to get him feeling all right again. Pain
management is now a day-by-day project. Thankfully,
Joshua's comfort is the top priority for our pediatrician &
palliative care doctor. One phone call from me is all it
takes to get adjustments ordered, so the end result has been
good for my boy. His hearing has become extremely
sensitive and random sounds cause him physical pain. If
someone accidentally scratches their fingernails on a
pillowcase or laughs with a certain tone/pitch in their voice,
Joshua will cringe & tear up. It's not a put-on or a fake
thing. He is genuinely pained by the sound. As a result,
everyone is needing to be very careful so we don't trigger
anything that will hurt Joshie's ears.
Hospice has been... um... challenging. Living in a smaller
town means the hospice programs are not accustomed to
children; as such, we are trying to tailor an adult hospice
program into what a child needs. And not just any child,
either. The hospice program here has only had children on
their service (1 child every 3-5 years) who were dying from
cancer. As such, they had flow charts that could be printed
out (literally) to give the hospice personnel a road map of
how to treat the child appropriately. The hospice team has
never taken care of a child who has been chronically-ill &
is dying from a condition that has no literature available to
give them any idea of a road map. As such, there are a lot
of misunderstandings, missteps & challenges
happening. The past few days have been filled with so
much stress that I finally lost my cool & snapped at a few
people, telling them that I thought hospice was supposed to
make the process of losing Joshua EASIER for my family,
not harder. I am sure the organization is wonderful for
adults. They are very much out of their element with a
child, though. Some are trying and have said they really
want to figure out how to "do this right" for Joshua. Others
are having their pride squished & feeling threatened
because two pediatric specialists are refusing to give up
control of Joshua's care (which I wholeheartedly support ~
no way am I comfortable letting ANYONE other than Dr. S
& Dr. G call the shots with regards to Joshua's medications
at this point... especially not a doctor who specializes in
geriatrics!). I think what it comes down to is there is an
adjustment period when a person transitions to hospice &
our entry into the program has been bumpy. If the bumps
can get ironed out in a reasonable amount of time, we'll
keep Joshua on hospice. If it looks like there are going to
be insurmountable differences of opinion amongst the
professionals, we'll pull him off and go back to what we've
been doing. Either way, as long as Joshua continues to
receive what he needs (pain & IV meds & a nurse over here
to change out his port needle & dressing each week or to
provide me with the supplies to do it, myself), I don't care
what "umbrella" he is under. I just want this to be peaceful
& easy for him and if I am being forced to spend multiple
hours a day dealing with hospice internal politics & other
garbage instead of spending time with Joshua, then hospice
isn't worth it.
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Written May 8, 2013 12:32am by Kate Parker
I want to give an update since I know people care & are
checking in to see how Joshua is doing. There isn't a lot to
say today, though, which I guess could be interpreted in
several ways, but I'm not being coy. Today has been pretty
much like yesterday. Joshua woke after 15 hours of sleep,
played at the computer, rested, watched a movie, rested,
played at the computer and that's where he is right now. He
has eaten several Fruity Pebble bars & Cocoa Puffs bars
and has had about 12 ounces of grape juice plus the halfounce per hour of pedialyte that goes through his gtube. He has gotten a half-dozen breakthrough doses of
fentanyl in addition to the continuous drip that gets pumped
through his port into his veins. He is somewhat restless,
switching positions frequently in an attempt to get
physically comfortable. His tolerance for noise is not good
even though he, himself, has zero volume control & speaks
loudly at all times. His voice remains hoarse & he often
squeaks when he talks, which would be funny if it weren't
indicative of his progressing condition.
Other than that, there isn't really much to talk about that
wouldn't be a repeat of things I've already said. We're all
doing okay ~ as good as possible under the circumstances ~
and taking things one day at a time.
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Written May 7, 2013 12:21am by Kate Parker
I had to slow the rate of pedialyte being fed through
Joshua's g-tube because 1 ounce per hour was making him
nauseous & that, in turn, made his head hurt more. He's
back down to 1/2 ounce per hour and as long as he can
tolerate that rate, we'll keep him there. This afternoon, he
had a couple hours of needing to get bolus doses of
fentanyl every 15 minutes, which made him incredibly
sleepy & spaced out, but then everything settled down & he
enjoyed laying on the floor beside his brother, resting
comfortably & watching a movie (Phineas & Ferb). The
rest of the night has passed uneventfully, with a few doses
here & there of fentanyl, but nothing overly worrisome.
Oh, and he's completely off TPN now. I disconnected him
at noon today & that was it. I keep telling myself that it
doesn't matter that he isn't getting TPN anymore because
optimum nutrition isn't going to stop his brain stem from
failing. Still, it's hard. But the truth is, everything about
this process is hard. Every. Single. Thing. Losing TPN is
just one more "thing" added to the pile.
In other news, the hospice case manager came out this
afternoon to formally admit Joshua to the program. It
wasn't anything monumental ~ just signing some forms for
consent & insurance and chatting with the nurse. We
agreed that the overall plan is to keep Joshua comfortable
& take this one day at a time for however many days he has
left. She didn't have a lot of new information for me, but
since I had no expectations of the meeting, it was fine.
I don't know what else to write about tonight. I'm tired &
feeling down. Hopefully tomorrow will be better. G'nite!
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Written May 5, 2013 11:45pm by Kate Parker
“How lucky I am to have something that makes saying
goodbye so hard.” ~ A.A. Milne (Winnie the Pooh) I read
this quote tonight & thought how very appropriate it
is. How fortunate I am to have Joshua in my life even
though the incredible specialness of him makes knowing I
will have to say goodbye (even temporarily) so difficult.
Things are okay. There are emotional ups & downs each
day, but mostly, we're just kind of riding the waves as they
come. Joshua continues to need increasing amounts of
fentanyl at increasing frequency. He also continues to
enjoy watching movies & playing Minecraft on the
computer. His world is very small now, but he is still
happy despite his limitations. That's something Megan & I
were marveling at today as we scrolled through pictures of
Joshua ~ he almost always has a smile on his face. Despite
everything he's gone through, he's remained full of
joy. That truth is nothing short of amazing.
Tomorrow, he'll be completely off TPN. He is tolerating 1
ounce per hour of pedialyte through his g-tube. He eats
Fruity Pebble bars (they're similar to Rice Krispy treats), an
occasional few bites of egg sandwich (egg & cheese on
toast) and drinks grape juice. I'm not sure how long a child
can be sustained on that, but that's the extent of his diet.
He is having increasing bouts of apnea and dysautonomia,
though he is only mildly bothered by them at this time. He
will calmly announce that he was having trouble breathing
after a big desat or complete apneic episode. We calmly
ask if he's okay now & tell him, "Good," when he answers
that he is. It's fairly surreal, actually, how everyone is just
sort of accepting where Joshua's at and where things are
going. We had a few very hard days, but now we're all just
kind of numb as we wait for the train to hit us. We are
spending as much time with Joshie as we can, kissing &
hugging him frequently throughout the day & night, staying
up as late as he wants and basically catering to his every
whim because we can.
It is a very odd place to be, this "waiting for the end to
come." Hearing that it's only a matter of time & having
nurses coming over frequently to help prepare my family
for the impact of losing Joshua, yet looking at my child
who still seems so alive despite the war being raged within
his body & not truly believing that he won't be here much
longer. I think this is what denial feels like. Maybe that is
why I feel so calm. I almost don't believe it's going to
happen soon even though I'm being told it is & those
around me are getting things in place for what they know is
coming and Joshua, himself, talks daily about going to
heaven. Maybe it's not a healthy way of coping, but
honestly, I didn't consciously choose to go this route & I
don't know how to get on a different path. As long as I
keep everything on a theoretical plane of existence, I can
function. As soon as I acknowledge that this is happening
to MY little boy and I open the door to my feelings, I fall
apart. Since I have a sick little girl in addition to a dying
little boy and 6 other kids who need a mother to help them
get through the most-awful experience of their lives, I can't
indulge a giant fall-apart for myself right now. After the
train hits & Joshua is gone, I will let myself grieve however
I need to. But for now, keeping the emotions
compartmentalized & out of the way for the majority of the
day is the only way I am going to get through this with my
sanity even remotely intact. Denial is the name of the game
& it seems I am pretty good at it.
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Written May 4, 2013 12:45am by Kate Parker
Today was another tough one, emotionally.
Joshua is sleeping more, which is to be expected
considering the amount of fentanyl he is getting via
continuous drip. I got home from spending several hours at
the lab & doctor's office with Bethany just in time to meet
the home care nurse, who was at the house to do Joshua's
weekly de-access and change of his port needle &
dressing. We had to wake Joshua so we could bring him
downstairs and after I used a bunch of detachol to loosen
the dressing over his port, the nurse de-accessed him
(removed the needle) and Joshie got his weekly fullimmersion bath. Afterward, I was able to hold my little boy
on my lap and cuddle without him being hooked up to
anything ~ no lines to get in the way ~ for about 5 minutes
before he said his head was starting to hurt a lot, at which
point the nurse & I knew it was time to get him re-accessed
so the fentanyl could start flowing again. Re-accessing
went smoothly and Joshua informed us that God was
making the pokes not hurt very much anymore (I'm sure
fentanyl helps, too).
After we had everything reattached and the pumps going, I
was taught how to give IV meds & clinician boluses of
fentanyl. It's not difficult to do, but it was still a new thing
to learn. Joshua's TPN was reduced by another 50%,
making the new rate 12.5ml per hour, which it will run at
until Monday, at which point TPN will be
discontinued. His fentanyl pump was reprogrammed to
allow bolus doses to be given every 15 minutes, if needed,
at a rate of 250mcg per dose. That is in addition to his
basal rate, which is 150mcg per hour via IV and 175mcg
per hour via patches.
The nurse and I talked about more specifics regarding what
the end could look like for Joshua. I learned that in
respiratory failure, shallow breaths and long pauses
between breaths and periods of apnea (no breathing at all)
occur until there are no more breaths drawn at all. He
could have anxiety or agitation or seizures caused when his
brain "misfires". If a dose of fentanyl causes him to stop
breathing, it could occur very quickly after the bolus dose
button is pressed. If his brain stem triggers the respiratory
failure, the odds are it will occur during the night. It makes
me glad that we added a hand-held trigger that allows
Joshua the ability to press a button to deliver a bolus dose
himself because otherwise, I would have trouble wanting to
push the "dose" button on his pump, knowing there is a risk
of it causing him to stop breathing forever. Unfortunately,
when the choice facing us is either medicate Joshua so he
does not suffer enormous pain and risk that medication
causing him to stop breathing OR withhold medication and
cause him enormous pain that would interfere with his
ability to have any quality of life, we really don't HAVE a
choice. I've known for two years that this day could
come.... now that day is here. If Joshua needs multiple
doses of pain medication in quick succession, there is a
very real risk that adequately treating his pain will result in
the cessation of his breathing. His brain stem has reached
the point of dysfunction that this is the cold, hard reality we
are living with now.
At this point, it is not anticipated that Joshua will be here
two weeks from now. Of course, he could surprise
everyone and live longer than that, but still, that is the
prediction. I honestly can't imagine him not here... I just
can't. I cannot imagine NOT hearing his sweet little voice
or kissing his cheeks or feeling the weight of him in my
arms anymore. I'm not going to try to imagine it, either,
since the reality is too-quickly approaching.
Tomorrow, a pediatric hospice home care nurse will be
coming over to teach me how to place an indwelling foley
catheter for the time if/when Joshua is not able to pee
voluntarily. Since fentanyl can make urinating difficult,
especially at high doses, and Joshua is able to pee only in
one particular position (a crouch) due to his neurogenic
bladder, it is realistic to anticipate a time when he is unable
to get into the position necessary to empty his bladder. At
that time, I would place a foley catheter that would stay in
his bladder to keep it empty. I am comfortable cathing
Joshua since I used to do it 4 times a day, but I've never
placed a foley before. I know it is easy to do ~ just insert
the catheter and inflate a balloon with sterile water to hold
it in the bladder and then adhere the tubing to the leg with a
foley stat-lock so it doesn't get tugged or pulled out and
attach a collection bag for the urine to drain into ~ but the
nurse is going to come over to talk me through the
procedure in case Joshua needs a foley placed at a time
when a nurse is not readily available to come over & do it.
On Monday, a hospice nurse will come over to admit
Joshua to the hospice program. An infusion nurse will
come over to discontinue the TPN & change over the
tubing since we will no longer need the line currently being
used for TPN & lipids. Then Cece, the nurse we have
already gotten to know (and really like), will come over on
Wednesday.
Too many emotions are swirling around in my head & heart
for me to write coherently at this time. This entry was
simply to detail the latest developments in order to keep
those reading about Joshua "in the loop" and to help me in
remembering how things progressed when I come back
some day to re-read his story.
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Written May 2, 2013 8:53pm by Kate Parker
On Monday, Joshua will be transitioned to hospice. Yes, I
know it's a good move & that hospice can provide support
and help and all that. I also know that the words "hospice"
and "Joshua" should never have to be used in a sentence
together.
His voice has gotten very hoarse, which is a chiari
symptom. It just means pressure is building up inside his
head. Nothing we haven't seen many times before. Only
difference is, this time we can't do anything about it except
increase pain medication, as needed.
He has been spent today playing a computer game with his
biggest brother, interspersed with cuddles for mom &
kisses for anyone who asks for them. Adam took about 5
minutes of video as Joshua played silly games with
Faith. Listening to all of them laugh was sweet music to
my ears.
He's pushing his button for extra fentanyl quite
frequently. I am sure we'll be increasing dosages &
frequency tomorrow.
Our pharmacist told me, "I imagine it feels like you're on a
runaway train that has no brakes and you've heard there's a
bridge out ahead." I told him that was an apt analogy &
shared with him my friend's analogy about being stuck on
train tracks & knowing a train is coming. I would wish the
train could just hit me and get it over with except that
would mean less time with my little boy & no matter how
emotionally exhausting this time is, I refuse to wish it
away. Instead, I'll wish for the strength to continue going
& a steel-trap memory to remember all the details.
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Written May 2, 2013 12:41am by Kate Parker
Joshua's TPN has been reduced by 50%. On Friday, it will
be further reduced by another 50% and then he'll be done
with TPN on Monday. I'm supposed to start a 15ml/hr gtube feed of pedialyte which he will hopefully tolerate.
That will give him 12 ounces of fluid per 24 hour time
period plus whatever he drinks by mouth. It won't be the 54
ounces per day that he needs to stay hydrated, but it'll keep
him comfortable.
His fentanyl has been increased (the continuous drip) and
on Friday, if he's still needing a lot of breakthrough doses,
we'll increase both the continuous rate & demand dose
amount.
I'll be receiving doses of IV zofran & valium to have onhand to give Joshua if he has nausea/vomiting and/or
terminal agitation.
The home care team would like to transition Joshua to
hospice. Dr. S & I will make a decision about that on
Friday. While Joshie definitely fits the criteria for a hospice
patient, there are other factors to consider (such as whether
Dr. S would still be calling the shots & how would the
chain of communication work out ~ right now, I can call
Dr. S directly versus having to go through a bunch of
nurses first and we'd like to keep it that way). I'm not
concerned about it... the decision to transition him will be
made if it needs to be made. All I care about is keeping him
out of pain in the simplest manner possible.
We brought Joshua downstairs tonight so we could make
more 3D hand castings. Faith wants one of her & Joshie
holding hands and both Adam & I want new ones with him,
too, since his hand has grown since the last time we made
castings. I am hoping Joshua will want to cuddle for a bit
tonight, too. I'll update again tomorrow.
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Written May 1, 2013 1:58pm by Kate Parker
Joshua is still with us.
He's currently asleep, but aside from some increased head
pain that made it difficult for him to fall asleep last night, I
am not seeing anything going on that would make me think
he is going to heaven today.
Our pediatrician is talking with the palliative care doctor
today & will be calling me around 2pm to discuss weaning
Joshua off TPN & attempting to feed him & keep him
hydrated through his g-tube again. I don't think anyone
expects this to be wholly successful, but TPN was a
temporary measure intended to get Joshua to the wedding
& now that the wedding is over, we will lose TPN as a
treatment option (insurance mandated decision). I think I'll
be told by Dr. S that the plan is to feed Joshua to his
comfort level, not necessarily try to push him to accept the
volume he technically needs to remain completely
hydrated. I don't know for sure, though, so I'll wait to
speak more on this topic until after I've talked with her this
afternoon.
Joshua has been in predominantly good spirits. Most of the
time, he isn't in pain, but when it does hit, it hits *hard* and
then it's a struggle to get him comfortable again. Dr. S
knows of this change & will have a plan of action when she
calls later. I've made it very clear that all I want is for
Joshua to not hurt, so I anticipate a good plan being
implemented to make that goal possible.
I have no idea what this day or any day beyond it may
hold. I do know we all are being held in the hand of God &
that we aren't walking this journey alone. Thank you for
the many prayers. My family is feeling peaceful & we are
all enjoying time with Joshua, knowing it is growing
shorter but trying to not focus on a specific day or time just
because our 7 year old has been so adamant about when he
is going to heaven. I have no idea if he has any "control"
over when he will die. I don't know if it will be today or
tonight. I realize it could happen and yes, I will stay close
to him all day long just in case it does, but I will not be
surprised if tomorrow comes and Joshua is still sleeping by
my side. I know he WANTS to go to heaven and I know
he is ready to die, but wanting something and being ready
does not automatically equate to it happening. Only time is
going to tell if Joshua had some insider knowledge. I won't
be shocked if he did. I also won't be shocked if he
didn't. In the end, it isn't going to matter because he WILL
get his wish of going to heaven to be with Jesus even if he
was not entirely correct about the date it was going to
happen.
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Written April 30, 2013 12:08am by Kate Parker
Two quick pictures ~~ one of the gorgeous couple &
another of the ultra-special best man/ring guy.
http://i1309.photobucket.com/albums/s630/kpmomof8/Ada
m%20and%20Faiths%20Wedding/248061_102010590111
78690_1682912597_n_zps492d4e2f.jpg
http://i1309.photobucket.com/albums/s630/kpmomof8/Ada
m%20and%20Faiths%20Wedding/AdamandFaithwedding1884-L_zps3c63c01e.jpg
Today was *everything* we wanted it to be: a truly lovely,
incredibly special day for Adam & Faith. Really, it could
not have been more perfect. Joshua was fantastic in his
role of best man and "ween dye". The photographer got
wonderful shots from the day. It will take a few weeks to
get the pictures, but once Adam & Faith have them, I will
make an album to share with you all.
Joshua was in great spirits for the majority of the day. He
was tired after the ceremony, but a short rest at home
before the reception started revived him & he was
delightful for another few hours. He did have a few bouts
of needing extra pain medication and it hurt his head when
everyone laughed loudly, but he was predominantly joyful
& he really enjoyed the day, which was exactly what I was
hoping & praying for.
Thank you *so much* for the many, many prayers covering
Joshua & the rest of my family today. God blessed us with
an amazing day we will never forget. I look forward to
sharing pictures as soon as I can. :)
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Written April 28, 2013 11:04am by Kate Parker
Forty-eight hours after increasing Joshua's basal rate of
fentanyl & his bolus doses (for breakthrough pain), we had
to increase the frequency with which he could receive those
bolus doses because despite the increase in amount of
medication, it still was not being allowed frequently
enough to control his head pain. Now that we can
administer a breakthrough dose every 30 minutes, things
are back under control ~ yea and thank you, God, for
compassionate doctors & nurses who are doing everything
they can for my little boy.
On Friday afternoon, it was "port dressing/needle change &
bath day" for Joshua. We remove the dressing from his
port, de-access him (take the needle out of his chest) and
then he gets a bath before being re-accessed (new needle
inserted into his chest) and hooked up to his fentanyl &
TPN & lipids once again. Typically, port changes elicit
lots of tears and trembling and apprehension for Joshua, but
this time, he was calm & chatty as I gently removed his
dressing by using detachol ampules to loosen the adhesive
& slowly pulled the tape & tegaderm off. He asked Megan
to bathe him and the nurse & I smiled as we listened to him
laughing & joking with his sister in the bathroom. When
we went to re-access him, he didn't cry at all ~ he actually
smiled through the procedure, announced that it didn't
really hurt & was utterly calm. VERY unlike our norm for
that process! He told Debbie, his nurse, "Today is the last
time you have to poke me because after the wedding, I'm
going to heaven!" He told us that Jesus will take out the
needle once he's in heaven but it won't hurt because nothing
is going to hurt him ever again. He was smiling & giggling
as he talked, kicking his legs in the air & acting positively
giddy. I smiled back at him & agreed with all he was
saying even though my heart was beating faster at his
words. Debbie couldn't talk because she was trying to hold
back tears. Later, she asked Joshua if he wanted to keep
getting TPN after the wedding and he told her with a big
smile on his face, "Nope! I won't need it 'cuz I'm going to
heaven!" After the visit was complete, I walked Debbie to
her car so we could talk privately for a few minutes. She
told me that from her experience, she has learned that kids
often have God's ear when it comes to things like this, and
she thinks we should really listen to Joshua and what he is
saying because in her opinion, his confidence & absolute
assurance of what is coming makes her believe he knows
something. She hugged me & I thanked her for her insight.
On Friday night, as Megan, Emily & I were getting Joshua
tucked into bed & going through our usual routines, he said
he wanted to wear his pulse ox because just in case he went
to heaven that night, he wouldn't want me to wake up, see
that he is gone, and think that he had been kidnapped. With
straight-faced agreement, I told him I thought that was a
good idea because I want to know when it is time to go to
heaven & even though he has told me he would let me
know when it is time to go, he might be asleep and
wouldn't wake up to tell me, but his pulse ox would beep so
I would know. Joshua agreed with me and said he will
grab my hand and tell me, "Mommy, it is time to go
now!" Then he made his sisters & me laugh when he told
us, "When I get to heaven, I am going to sing (imagine his
fists being raised in front of his body & shaking wildly as
he sings the Kool & the Gang song), 'Celebrate good times;
come on!' because my head won't hurt anymore! And then
the people in heaven will ask why I am singing & I will tell
them, 'Because my head doesn't hurt anymore!' and then all
of the people will say, 'Let's sing with Joshie!' and they will
sing, 'Celebrate good times; come on!' with me!" He went
on to add, "I am going to sing & dance and I will
breakdance & spin on my head since I can't do that here
because it would hurt my head super-bad & I would have to
go to the hospital." Megan, Emily & I told him that
sounded like so much fun & we agreed that the people in
heaven were going to be SO happy that his head doesn't
hurt anymore & we knew they would love his singing and
dancing because we sure do.
After a moment of thinking, Joshie giggled & announced,
"Then I am going to lay on my belly and say, 'Oh, it hurts,'
but then I will laugh & say, 'I'm just kidding!' And the
people will laugh and say, 'Oh, you're so hilarious,
Joshua!" Adam had joined us in the room & he told his
brother, "People will know that things don't hurt in
heaven," to which Joshua replied, "They might think it
didn't work for me." (not hurting). Then he told all of us,
"Tell your friends not to say anything!" because he doesn't
want the people in heaven to know about the joke he is
going to play on them when he arrives. We all assured him
that we would not tell the people in heaven and we laughed
& agreed with Joshua that it sounded like a really funny
prank. :) He smiled with satisfaction & said, "I will be
meeting new people and I will joke with them." He is very
much looking forward to it (in case you couldn't tell).
Every night for the past 3 nights, Adam & Faith have
sought assurance from Joshua that he is going to keep
breathing until their wedding. Each night, he promises he
will. The first night, after they'd gotten their promise,
Adam asked his brother, "You know you can't go to heaven
the night that we get married, right?" Joshua replied, "Yes,
I can! It's my choice!" Adam told him, "Well, weddings
go for 2 days, Joshua ~ there's the wedding ceremony the
first day and then there's the party after that and then there's
a special family time the next day. So you have to stay for
at least one day after the wedding, okay?" Joshua gave it
some thought before answering, "Okay, I will stay for 2
days after the wedding. But then I want to go to
heaven." Adam gave his baby brother a hug & agreed that
2 days would be great. Then Faith chimed in with, "But
WAIT! Joshie, I'm a Filipino and in the Philippines, our
weddings last for a week, so you have to stay for 7 days
after Adam & I get married!" (That isn't true, but she &
Adam were trying to get Joshua to agree to more time) He
laughed and said emphatically, "You're not there
anymore! You're HERE! So no! Two days only!" Faith
gave Joshie a sad face & asked, "Five days?" Joshua was
laughing hard as he countered, "Two!" Adam asked with
exaggerated hopefulness, "FOUR days?" More laughter
from Joshua as he again insisted, "No! TWO!" Faith once
again tried. "Three?" she asked with a sweet smile. Joshua
stopped laughing, sat quietly for a full minute, then
answered, "Maybe three. I think two, but maybe
three. Okay?" Faith & Adam smiled, hugged Joshua &
both told him, "Okay. Three days." Faith made us all
laugh when, as she & Adam were leaving the room, she
said to Joshua in a bright, cheerful voice, "Okay. Seven
days then? Great! Thank you! Good night!" Then she
closed the door before he could yell out, "No! Not
seven!" LOL After they had left the room & the lights
were out, Joshua snuggled against me & said, "Mommy, it's
really going to be 2 days, but I told them 3 so they would
stop asking me." I hugged him tightly and said, "I
understand. It's okay. You have been so strong & brave to
hang on this long. You being at their wedding is going to
be the best day ever for them. It's okay if you want to go to
heaven 2 days after that, Joshie. I love you." He reached
backward to hug my neck & I kissed his cheek & he told
me, "I love you, too. Now I need to go to sleep." And
within a few minutes, he was out.
You know, it's only in writing this out that I realize how
crazy it sounds that we were sitting in the bedroom at 1am,
listening to two adults bargaining with a 7 year old child
about how many days that child would agree to live after
their wedding. I have NO IDEA if Joshua has any say in
when he is going to die. I am writing out the conversations
we are having with him because he is so serious about the
topic that it is hard to believe he DOESN'T know
something... it's easy to believe he and God have been
chatting & God (or the angels) told him when he gets to
come to heaven & that is what has him in such great spirits
these days. I'll say this much ~ no adult in my family will
be shocked if Wednesday night turns out to be our last
night with Joshua. We will be wholly & completely
devastated, but we won't be surprised because he's been
telling all of us what is coming (just like he promised me he
would). And honestly, as sad & heartbroken as we all are
going to be on the day he dies, it is really difficult to deny
that it is going to be a wonderful day for Joshua because the
joy that he exudes when he talks about going to heaven &
the fun that he is going to have there is almost palpable. As
much as I want to beg him to stay here, I can't get the
words out of my mouth. I never want to be without him,
but something in my heart smiles to see him so happy. He
is not eager to leave us & he is making that clear with the
things he is saying, but he is happy about where he is
going, and isn't that how a parent wants it to be when their
child is heading off somewhere without them ~ to have the
child more excited than fearful about their upcoming
adventure? He told me last night, "I will send you rainbow
butterflies to remind you that I love you and that I miss you
and to tell you, 'You should try it, Mommy!'" I asked, "Try
what?" and he smiled as he answered, "Heaven! You
should try heaven! You will have to come soon, too!" I
leaned forward to kiss my little boy's cheek & answered,
"Okay. I will."
Conversations like these are a gift from the Lord to me
because one of the things that has filled me with grief is
seeing Joshua SO happy about getting to leave. I felt
rejected, as though all of the love that I have for him means
nothing & Joshua was thinking, "Yeah, you've been great,
but there's something better coming along now, so... see ya,
lady!" Logically, I have known that isn't the truth, but
emotionally, it's been a struggle, so having Joshua telling
me that he is going to miss me and that he can't wait for me
to join him in heaven and that he will need to hold my hand
when he goes has been an incredible gift to my heart. It is
further evidence, to me, that God is good in even the
hardest of situations and that He cares about me just as
much as he cares about Joshua. He isn't taking Joshua
because He wants to destroy me... He isn't taking Joshua
away because I'm not good enough at being a mother... He
isn't taking my child because He is cruel. I still don't know
why God is taking Joshua, but I now truly believe in my
head & feel in my heart that He is trying to help me
through it... that He is gently hugging me & saying, "Your
little boy isn't leaving because he doesn't want to be with
you anymore.... He's just excited to come spend time with
me and he knows that you will be with him again soon, so
that is why he's not sad about leaving." I needed to know
that... needed that reassurance... and now, because of the
many conversations Joshua has been having with me (and
other people & family members), I have it. God is here,
every moment, caring about every detail & meeting the
needs of every person involved because He loves us all and
it doesn't make Him happy to see us hurting. I know He
could just give us a miracle & heal Joshua & then we
wouldn't have to hurt anymore, but it seems He has a
different plan and even though I don't understand it (at
all!!!), I still trust & believe that my God is going to bring
beautiful things out of the pain & tears. Really, He is the
only One who can. In the meantime, I am grateful for the
gifts of love & reassurance that are coming from my little
boy as he unknowingly helps prepare his family for the
time when we will have to let him go. He is an incredible
little person... there aren't words adequate to express how
tremendously he will be missed.
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Written April 27, 2013 12:13pm by Kate Parker
Posting this on the run for those who like to pray for
specific requests. Here's an odd, but sincere, one ~ please
pray for me to be able to carve out enough time to write a
full journal entry today. I want to share what is going on
and conversations being had, but with wedding
preparations & daily life, it's hard to get a large chunk of
time to write.
I'm heading out with David & Isaac to do a few errands and
then I have to take all the girls for haircuts this afternoon,
but I am praying I can sit down to write here after
dinner. Please pray for nothing to thwart that.
Thanks!
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Written April 25, 2013 1:25pm by Kate Parker
Joshua is having a harder time as of late. More head pain
necessitating more bolus doses of fentanyl and less ability
to filter out external stimuli, which results in more pain, as
well.
Four days until the wedding. It was going to be on Friday,
but a scheduling conflict with the venue forced a change in
plans, so Monday is the day, instead.
The home health nurse & I had a long, somber discussion
on Tuesday afternoon about what is going to happen and
what we can anticipate seeing as Joshua's body continues
showing signs of the damage being done inside his head as
his brain stem's function worsens. Things like his organ
systems shutting down, his lack of interest in eating or
drinking, his increased need for pain medication which will
lead to an increase in sedation & the amount of sleeping he
does & then the eventual cessation of his breathing ~ either
from his brain stem completely ceasing to work or from the
sedative effects of super-high doses of pain meds. I asked
about continuing IV fluids once he stops drinking on his
own and learned that giving fluids when the body is
shutting down actually works against a person because the
kidneys can't filter out the fluid & then it seeps into the
tissues & can fill up the lungs. My goal is to keep Joshua
comfortable, not to drown him by trying to keep him
hydrated, so once my little boy is uninterested in drinking
on his own, we won't push IV hydration anymore (he is still
receiving TPN at this point, but I don't know how long
insurance will approve coverage once the wedding is over
~ I haven't yet heard from the pediatrician about that
specific topic). I realize that may sound cruel, but it's
not. When a person is dying, they naturally stop eating &
drinking & they do not experience any distress from that (at
least, that is what I'm being told).
Anyway... it was a stupendously awful conversation and
while I appreciated learning more about what the end could
potentially look like, it made me feel sick inside because if
nothing surprising happens to slow this process (such as
insurance approving a longer term of TPN use), we've
probably got only a few weeks left with Joshua & let me
tell you, NO amount of preparing for the eventual death of
your child can make you actually ready for it to happen. He
is telling us he wants to go to heaven two days after the
wedding. I have no idea if that is within his "power" to
dictate, but it's what he's saying. I know what I want
(complete miraculous healing & a long life here with his
family), but ultimately, my prayer is for God to do what is
best for Joshua... whatever that is going to look like... and
no matter how much it goes against everything my heart is
crying for. I CAN recognize that heaven is the best place
for ALL of us and, as such, instead of wanting to keep
Joshua here with us, I should be asking God to take us all
THERE to be with Him. I guess what it comes down to is
that I don't want to be separated from my son, and while
I'm relieved that his pain & suffering will end when Jesus
calls him Home, I am hurting because my pain and the pain
of my husband and children and friends who love Joshua is
going to continue on.
I am being encouraged to live "in the moment" and to try to
not look too far ahead. I want to assure those who are
concerned that I AM doing just that. When I am doing
wedding preparations with Adam & Faith, I am focused on
that. When I am playing a game with David, Sarah & Isaac
or making dinner with Megan or watching a video with
Emily, I am focused on that activity & enjoying my time
with them. When I am with Charley, talking about our
respective days as we spend a few short moments alone, I
am focused on him. And when Joshua is awake, I am
laughing & kissing & cuddling & teasing & fetching things
& catering to his every whim. But when he is laying asleep
beside me in a darkened room, his rest aided by a hefty
dose of fentanyl, and there is nothing else demanding my
attention, I think about what is yet to come. I choose to
express a lot of those thoughts here because that's what a
journal is for. It doesn't mean I am consumed by the
sadness every moment of the day or that I am sitting,
wringing my hands in teary anticipation of the horror that is
heading my way. The fact is, this IS hard. It IS brutally
painful. It IS awful. God is so gracious to me, though, and
blesses me with periods of time where I get to rest, to
laugh, to hug & be hugged by people who care, and to
remember that there are still lots of good things going on
despite the really bad thing happening with
Joshua. NOTHING is going to make this better, but lots of
things can help to make it easier to bear, and God is taking
care of me (and the rest of my family members) through it
all. If I have failed to express that adequately, I'm sorry for
that. I do want people to know that yes, this is really
difficult and I am really sad and I hate that my little boy is
dying, but God is with us every step of the way and He is
giving me strength to get through each day and bursts of
"happy" to go along with the "sad".
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Written April 22, 2013 2:22am by Kate Parker
It is really challenging being genuinely happy about an
event while simultaneously being genuinely sad &
apprehensive about another event, especially when the two
events are linked and affect every member of a family.
Being told, "Try to focus on the happy and don't think
about the sad," is not helpful because it's impossible to
think about one without thoughts of the other creeping in.
My family members & I are able to smile & laugh & enjoy
the "highs" (wedding) but the sadness of the "lows"
(Joshie) are an everyday event, too. Every day, I have at
least one child come to me with teary eyes, needing a
snuggle in my lap and reassurance that even though things
aren't going to be "okay," we are going to get through it and
yes, God has a plan in what He is allowing to happen even
though we don't understand any of it. 95% of everyone's
day is happy and NOT focused on the sadness hanging over
our heads, but that 5% is still there and it doesn't matter
how much we all try to ignore it... it can't be completely
blocked out.
A conversation that took place between Joshua & myself
just minutes ago as Adam & Faith sat a few feet away,
listening:
Me, laying my head on Joshua's leg ~ I love you.
Joshua ~ I love you, too, but please get off my leg.
Me ~ But I want to love on you!
Joshua ~ You can love me in heaven.
Me ~ What?
Joshua ~ You can love me when we are in heaven.
Me ~ But we aren't in heaven yet!
Joshua ~ Well, you can love me there.
Me ~ We're not going to heaven any time soon, though.
Joshua ~ Yes, we are!
Me ~ Well, I don't know when we are going.
Joshua ~ I will tell you.
Me ~ When will you tell me? The day before or like right
when it's time to go? Do I get any warning?
Joshua ~ I will tell you when it is time. I will say, "Come
on, Mommy. It's time to go to heaven now."
Me, swallowing hard ~ Okay, Baby. That sounds perfect.
You can tell me when it's time to go and I'll love you in
heaven forever.
Joshua ~ Good.
Then he leaned forward to hug my neck & gave me a kiss.
Something else he told Faith & me tonight is that his skin
isn't gray ~ it's purple because he drinks so much grape
juice (that's all he drinks now because it's the only beverage
he can still taste enough to enjoy). He laughed as he told us
we could call him "Grapey".
Happy... sad... happy... sad.... welcome to my world, where
everyone tries to focus on the merry & lighthearted even
when the somber & painful slaps us across the face. Like I
said, it's a hard place to be, but I know it could be a lot
worse and I'm well aware that one day (maybe soon if
Joshua gets his way), it will be.
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Written April 18, 2013 3:30am by Kate Parker
Joshua has been reunited
with his Adam & Faith and, as you can see in this picture,
all is good in his world again. When Adam & Faith were
coming off the plane, Joshua held a "We missed you!" sign
in front of his face, completely convinced that they would
not recognize him behind the sign. They walked over to
him & greeted Emily, at which point Joshua dropped the
sign & yelled, "BOO!" Everyone who heard him
laughed. Adam bent down & Joshie wrapped his arms
around his brother's neck, hugging tight. Seeing the two of
them reunited was all it took to start both Faith & me
crying. It was such a sweet, emotional moment and we
were overwhelmed by it (in a good way).
The infusion nurse is coming over tomorrow to increase the
rate of fentanyl that Joshua receives via continuous IV drip
and to increase the bolus dose amount that he can get every
hour, if needed. She'll also de-access him, let me give him
a bath and then re-access his port so we can restart his
TPN, lipids & pain medication. She will also draw labs
because Monday's labs showed Joshua's liver function was
off & the pediatrician isn't comfortable waiting until next
Monday (the scheduled lab day) to re-check those values.
The home health nurse will be over in the afternoon to do
her weekly assessment, as well, so we'll have a busy few
hours. It'll be good to get Joshua more medication every
hour & ensure he remains comfortable at all times.
It's uber-late, so I'll sign off for now. The wedding is next
week & we've got lots of final preparations to make. I'll
share pictures of the "da ween dye" (he is actually the best
man who *also* gets to hold the rings) after the special
day. Tonight, Adam led us in a time of prayer as we
thanked God for bringing Faith & him safely home and for
letting us keep Joshua here to be part of their wedding. It's
an answer to many prayers and we all are so happy that
Joshua will be physically present and by his brother's side
on the day Adam marries the love of his life. It's a huge
blessing & we all recognize that & thank God for the gift of
extra time that He's given us with Joshua.
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Written April 17, 2013 3:06am by Kate Parker
After an unexpected snafu that prevented them from flying
this past weekend, Adam & Faith are now en route to Los
Angeles, where they'll have a layover before flying the last
leg of their journey home. Joshua will be one of the kids
who accompany me tomorrow night to pick up our weary
travelers at the airport. When I told Joshua that he would
see his big brother tomorrow, his response was, "Good.
Then we can do the wedding and then I can go to heaven."
That led to me asking how he can possibly know he will go
to heaven soon after the wedding and him answering that
he will just die... that he will stop breathing and that will be
it. He also informed me that "it feels sort of weird when
that happens," (stops breathing) & I told him that maybe we
can just go to sleep one night and wake up in heaven so he
doesn't have to experience that weird feeling. He agreed
that would be a good thing. He has been subdued lately,
which I think is due to the past few days being tougher than
usual for him with regards to headaches & apnea, but I am
still hoping for some smiles and a happy boy when he is
reunited with Adam & Faith.
He has made his home infusion nurses teary-eyed lately
with his announcing that soon, they won't have to poke him
ever again because he is going to heaven, where he won't
need to be poked anymore. He's also been reciting a litany
of things he will be able to do in heaven ~ things he has
either never been able to do or has lost the ability to
do. Riding a bike tops the list, followed by running,
jumping and playing at the park for a long time. He is
looking forward to not having a port or a g-tube or shunts
or needing medicine or IV food. He can't wait to walk
again & to never have any pain. As much as we (my
family) are going to miss Joshie, we want all of those
things for him, too. We don't want him to die, but we also
don't want him to suffer. A friend who has a son with
Duchenne Muscular Dystrophy ~ a condition that is
incurable ~ advised me to "follow my son". In other words,
let Joshua dictate the steps we take as his earthly journey
comes to an end. It struck me as wise counsel & I intend to
follow it. As long as Joshua wants to stay with us, I will do
everything I can to make his days happy & comfortable,
but when my little boy has had enough and tells me it is
time to go to heaven, I will, with tears freely flowing &
heart breaking, open my hands and give him back to God.
He deserves that last gift from his Mommy and I only hope
I can be half as brave in that moment as my Joshiebear has
been his entire life.
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Written April 11, 2013 2:42am by Kate Parker
Joshua has been talking today of angels, God and how he
can't wait to go to heaven so he won't be poked ever
again. I told him his big brother & Faith would be home
soon (this weekend) and the response was, "Good! Then
we can do the wedding and then I can go to heaven!"
He's so ready to go. If only the rest of the family felt the
same way. We don't, though. At all. Oh sure, we
recognize that heaven will be wonderful for Joshua since he
will be whole & healthy & perfect & able to do all the
things he can't do here, but the fact remains that we will be
missing a large piece of our hearts with no idea when we
will get to see him again & that is not something we are
looking forward to. As such, we won't ever be ready. It
isn't going to happen. We're no longer even trying to
pretend it's possible. We're glad that God has prepared
Joshua's heart so thoroughly, though, and that our little boy
is not anxious or fearful about what lies ahead. As awful as
the destination we are being forced to walk toward is, we
can appreciate what the Lord is doing for Joshua & our
family on the journey.
On a happier note, Joshua wanted to make cookies tonight
at 11:30pm, so Megan & I carried him & his pumps & bags
downstairs and got him situated so that he could help. He
lasted about 30 minutes before asking to be taken back to
his room, but there was joy in having him in the kitchen
with us for that brief time, chattering & giggling as he
touched the raw cookie dough and helped "smoosh" it
down. I'm so thankful for the bursts of happy that God
blesses us with each day. Those moments makes it more
difficult to believe that our time with Joshie could be close
to ending, but gives us happy memories to treasure & I
thank the Lord for every one.
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Written April 9, 2013 9:14pm by Kate Parker
In the past 24 hours, two friends on Facebook have shared
articles that are so full of helpful & useful information that
I want to share them here. I hope you will take a few
minutes to click each link. They're short articles, but truly,
they're both worth reading.
Confronting the Lie: God Won't Give You More Than You
Can Handle
http://natepyle.com/confronting-the-lie-god-wont-give-youmore-than-you-can-handle/
How Not To Say the Wrong Thing
http://www.latimes.com/news/opinion/commentary/la-oe0407-silk-ring-theory-20130407,0,2074046.story
Today has been a good day for Joshua. He woke up a little
after 2pm and watched a movie (Rise of the Guardians)
with Isaac. His home health nurse came over and was here
for a couple of hours, which was fun (really!). Now Joshie
is playing Super Mario Bros on the Wii while Emily works
on a cross-stitch next to him and I am sitting on Megan's
bed. Megan took the other kids out for a bike ride &
Bethany is sleeping, so the house is quiet, which is
nice. Low-key days like today are enjoyable & a welcome
break. :)
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Written April 9, 2013 1:43am by Kate Parker
The past two days have been pretty good for Joshua. He
has been happy in his room and the kids have had fun
spending one-on-one time with their little brother. They
watch movies together, play with legos or bionicles, enjoy
games on the Wii, and chat about things like Jesus, the fun
things Joshua wants to do in heaven, what they think
Joshua's room in heaven will look like, and when he thinks
he will be going there. He is so *happy* when he talks
about heaven now and we can see him getting
progressively more excited as the day of departure gets
closer. Everyone is hearing Joshua speak freely about
heaven on a daily basis. He doesn't always initiate the
conversation, but he isn't reticent about answering most
questions. The only one he refuses to answer is, "When are
you going to heaven?" He has told us that he knows when
he is going but follows up that he isn't supposed to tell us
yet. I don't know if God has gifted Joshua with a specific
knowledge or not, but I do know my little guy is steadfast
in his belief that he knows and his answer never wavers no
matter who asks the question.
Another subject Joshua has a strong opinion about is being
fed by TPN. He has said repeatedly that he doesn't want to
be fed by IV because he wants to go to heaven. While we
were in the hospital, he told his nurses, pediatrician and me
that he didn't want food in his IV. He would not let it go
and I finally asked him if he knew what would happen if he
did not get fed through his port. He answered very matterof-factly, "I'll just go to heaven!" I agreed that yep, that is
what would happen and he told me he was okay with that;
that's where he wants to go. I asked, "What about the
wedding? Don't you want to see Adam & Faith?" His
response was, "Well yeah, but they will know where I
am." He told this to the pediatrician and me and then made
a similar comment to a nurse who asked him if he was
excited about the upcoming wedding.
I'll admit that I struggled with the decision to put Joshua on
TPN. I have tried to respect his wishes since I learned his
condition would end his life way too young and to start
TPN would go directly against what he was saying he
wanted, but I definitely wasn't okay with NOT doing
anything & I desperately did not want to have to call Adam
and Faith in the Philippines & tell them that Joshua had
died, so I wanted to do whatever it took to keep him alive
so that Adam, especially, could see him again. I spoke with
Dr. G, the palliative care doctor, and she told me that in her
experience, it was rare for a child as cognitively-young as
Joshua is to be able to articulate a goal as clearly as he has
been doing for the past year ~ that of being the ring guy for
his brother's wedding. She said that it reminded her of a 15
year old young man who had been dying of cancer &
whose final wish was to attend his prom. Everyone worked
to do all they could to make that wish come true for that
boy. She said that being "da ween dye" was Joshua's wish,
that she has heard about him articulating that desire very
specifically for months, and that, as such, she believes we ~
his team ~ should do all we can to help him reach that goal
before he dies. As such, TPN was an appropriate treatment
to use for now, regardless of what Joshua might think of it.
That conversation helped me a lot, as it took away the guilt
that I was pushing to prolong my child's life when he had
made it clear he was ready to be done. The truth is that
Joshua is getting tired and he does seem very ready to go to
heaven, but he also does want to be part of Adam & Faith's
wedding first and no matter how wise he may be about
spiritual issues, he is still just a little boy and sometimes
needs his mom to make decisions that are in his best
interest, even if it's not what he says he wants. Most kids
will protest having to take nasty-tasting medicine even
though they truly do want to feel better. I am approaching
TPN the same way. I believe Joshua sincerely doesn't want
it, but in order to live, he needs to have it. That is pretty
much what I told him and he capitulated momentarily, then
countered, "Okay, but only until after the wedding. Then I
don't want the IV food anymore because I want to go to
heaven." I didn't agree or disagree with that statement. I
simply said we would talk about it after the wedding. I had
already been told the TPN would be a temporary thing, but
I didn't know how long it had been approved for use. I still
don't know because I haven't specifically asked... I know it
would be very difficult for me to say, "Okay, the wedding
is over, so let's stop feeding him via this route," if TPN was
still approved by insurance for use, so at this moment,
today, I don't want to know when the end date is. I'll wait
until the big talk with Dr. S at the beginning of May to face
it.
Since I am laying it all out here, I'll confess that I am a total
weenie and, as such, I am praying that God takes this
decision out of my hands. If Joshua is truly ready to go to
heaven after the wedding, then I would prefer to have him
stop breathing in his sleep one night because his brain stem
stopped functioning than to have him taken off TPN and
slowly die from his systems shutting down due to
dehydration/lack of calories. I'm fairly confident that the
death that would come after taking him off TPN would not
be awful because I watched Joshua not eat anything and not
drink more than a couple ounces per day for 4 days while in
the hospital and he was perfectly happy & content. He was
getting normal saline in his IV, not dextrose or any other
calories, and he was fine. Dr. S explained to me that as a
person gets closer to death, they stop eating and drinking as
a natural part of the process and it is not painful or
distressing to them, so if Joshua did progress that way, I
would not have to worry that he was miserable. If we have
to go the "stop TPN" route, we will still feed him and let
him drink to his comfort level and he will be kept pain-free
with fentanyl. No one is going to refuse him oral
sustenance. But my heart's desire is that we don't have to
go that route. It is my prayer that the only thing that would
take my son's life is the brain stem dysfunction that we
have been preparing for and not something "fixable" like
dehydration or an infection. I don't want to have to make
the decision to do something that will ultimately lead to his
death and I don't want the loss of TPN to be what triggers
the final downhill spiral. I realize it's not about me, but
about keeping Joshua comfortable and happy for as long as
possible, but like I said, I'm just laying it all out here and
sharing some of the thoughts I'm wrestling with. All along,
I have tried to make decisions that are best for Joshua, and I
will continue doing so. That doesn't mean I don't
contemplate how each choice will impact my life and my
other children's lives, especially once my little boy is gone
and I am left to remember every step I took with him and
wonder if I could have done something different to get a
better outcome. The closer he gets to leaving for heaven,
the more weight each decision carries (emotionally, if not
literally). There are no do-overs here, so I really need to
get it right, but how can I manage that when there won't be
a good outcome either way? It is this question that leads
me to pray for God to make the decision. That way, instead
of forever questioning my imperfect self, I could trust the
One who is incapable of making a mistake and know that
whichever path we wind up taking is the best one for
Joshua. That would bring some peace to this no-win, hard
situation.
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Written April 6, 2013 4:49pm by Kate Parker
The past couple of days have been hard. Bringing Joshua
home stressed his little system a lot. His body displayed the
stress of being moved (hospital to car to couch) with large
purple circles appearing under his eyes & profuse sweating
(picture beads of sweat above his lip & rolling down his
face & soaking his hair & shirt) even though his skin was
cool. He needed breakthrough medication (fentanyl) within
10 minutes of leaving the hospital and several more times
that evening after we got home.
The kids were SO happy to have Joshua home and were
just perfect with how quietly they greeted him, being
careful to not overwhelm him. Unfortunately, as the hours
wore on through the night, we realized that despite the
family room being kept dimly lit and the kids' efforts to
speak quietly, Joshua just couldn't handle the sensory
input. He requested pain medicine frequently and we
couldn't give it to him each time because the fentanyl pump
he's on (a PCA) gives a set amount each hour and then
allows a breakthrough dose at set times. Joshua came
home with his basal rate set at 62.5mcg per hour and a
breakthrough dose of 125mcg that could be given once
every 2 hours. We can push the "dose" button to try and
deliver more medication as many times as Joshua requests
it, but he won't get any fentanyl until that 2 hour mark is
reached.
I emailed Dr. S (ped) to let her know what was happening
& she emailed back that she would talk to the infusion
nurse & instruct her to increase the basal rate of the PCA to
75mcg/hr and to allow breakthrough doses of 125mcg
every hour.
The next day (yesterday), the infusion nurse came to my
home at noon. She deaccessed Joshua's port, which
allowed Megan & me to give him a full-immersion bath
and wash his hair (yea! I love having him smell like
himself again after 2 weeks in the hospital). After he was
clean & dry, the nurse reaccessed his port and drew
labs. Then she oversaw my mixing of the additives (like
vitamins) that get put into the bag of TPN each day & the
preparation of the TPN & setting up the pumps & then,
finally, hooking up the fresh TPN to Joshua's central
line. Good news there? I did it all correctly. :) After the
TPN, lipids & fentanyl were all running again, the nurse
did her assessment of Joshie (weight, blood pressure,
temperature, etc) and I poked his toe to get a capillary
blood glucose reading (I do that 3 times per day, using his
toes since he doesn't have sensation in his feet & therefore
the pokes don't hurt). Finally, we were done, just as the
home health nurse was arriving at the house! The infusion
nurse left & the home health nurse sat down to have me
sign a bunch of paperwork and then to go over Joshua's
history so that she would have an understanding of how he
got to where he currently is. She, too, had to do an
assessment of Joshua, but most of her visit was spent
talking privately with me. Home health will transition to
hospice once Joshua is removed from TPN.
What? You're wondering why we would take him off
TPN? Oh, that would be because insurance is allowing the
TPN as a temporary way to extend Joshua's life for the
purpose of attending his brother's wedding. It is extremely
expensive ~ over $400 a day ~ and insurance companies
don't like to pay $12,000+ per month to feed a child who is
ready to go to heaven. So... we have TPN on a "trial" basis
and on May 1st (or thereabouts), Charley & I will be sitting
down with Dr. S to discuss our options & make
decisions. One decision that has already been made,
though, is to transition Joshua to hospice through the same
home health company we are using right now (operated by
the hospital, not the organization we tried ~ and had a
miserable experience with ~ 1.5 years ago). Dr. S
recommended doing that & I agreed with her that it would
be a good step to take once Joshie is not getting TPN
anymore.
As of yesterday, Joshua's weight was up another 2 pounds
in the past 2 days. The pharmacist is working to cut calories
even more and get this under control (he's gained 8 pounds
in the past week). We haven't been able to get him to stand
fully upright & he hasn't been able to walk at all since
being discharged, even with assistance. He still prefers to
lay down versus sitting up.
Last night, Megan & I (with some help from Emily)
rearranged things to make a "quiet room" for Joshua
upstairs in his bedroom. One of the tv's & the Wii are now
in there so he can stay where it is quiet and we can let the
kids speak with normal volume & play downstairs & open
the curtains without causing distress for Joshie. We'll let
the kids play with Joshua as he is able to tolerate it
(probably just one or two kids up there at a time) and he
will never be alone when he's awake. Dr. S called it
"visiting hours" and that seems to be what Joshua needs at
this point ~ a place where he can be shielded from too
much sensory input because his brain can't filter it
effectively anymore (and the end result is a lot of pain &
needing extra fentanyl).
My heart was really hurting last night. I was glad we're
home where Joshua belongs, but so sad at how things are
declining (and how fast the changes are happening).
Today, Joshie woke in the afternoon and never asked to
come downstairs. He immediately wanted to play a Wii
game with Emily & she was happy to comply. Today, he is
happy like he was in the hospital. I asked if his head hurt
and he answered, "Nope! Nothing hurts and it's not going
to hurt now that I am in my cozy, cozy room!" That was
confirmation for the adults in the house that the "quiet
room" was the right thing to do. It's about making Joshua
happy & comfortable even when what that takes to
accomplish is painful for the rest of us (having to take turns
being with him & having to keep him upstairs, separated
from the main events of the household).
Today, my prayer has been this: Thank you, God, for
making a way for Joshua to smile again through having a
"quiet room". Thank you for his brothers & sisters having a
love & understanding of their baby brother that enables
them to do hard things for his benefit. Thank you for an
oldest daughter's unselfish heart that leads her to share her
bedroom for the sake of her brother's comfort. Thank you
for Your wisdom, Lord, in not bringing Adam & Faith
home today when they are both contagious with strep throat
& feeling awful & would have been miserable traveling.
Thank you for protecting not only the medically-fragile
kids in this house, but all of the people they would have
exposed on the flights home. I know You will bring them
home in Your perfect time & I thank you for that, Lord
(though I do pray that will be soon). Thank you for this
time with Joshua... for extra weeks of life through the use
of TPN to sustain him. Thank you for making a way for
that to be approved by insurance despite the arguments put
forth. Thank you, God, for Your loving care that answers
prayers, even the unspoken ones.
God is good, even in the hard places. And today, I have my
little boy here with me to hug & kiss & spend time with. I
am thankful for every moment we have together.
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Written April 4, 2013 2:05pm by Kate Parker
We are going home today. Joshua's lab results, while still
not great, have been deemed stable enough to allow further
tweaking of his TPN formulation to be done while we are
at home. That is a huge relief! Last night, I asked him if
he is excited to go home. He answered, "Sort of. I sort of
want to stay here." When asked why, he told Emily & me,
"It's quiet here." While you probably laugh at that, thinking
that in a house with 8 kids, the noise level is high and
things are chaotic, that isn't actually accurate. I mean, yes,
my home is noisier than that of a family with just 4 kids,
but it's not like everyone is yelling all the time, and people
routinely comment on how organized and relaxed our home
is (I guess people assume lots of kids = constant chaos &
are then surprised to find that's not the case when they
spend time with us). The reason Joshua prefers the hospital
atmosphere is that there's not a lot of stimulation, so he
doesn't get sensory overload. As his brain stem has
struggled more & more, his ability to filter out noise &
competing sensory input has gotten progressively
worse. As such, Joshua prefers quiet, slow-moving, not-a-
lot-going-on environments. A hospital room (with the door
kept closed) is pretty ideal for him now. Unfortunately, his
family isn't around & he does miss everyone & he does not
want to die in a hospital room, so staying in the hospital
isn't an option. We will go back to keeping things as calm
& quiet as possible when Joshie is awake and
downstairs. If he prefers to stay in his room, we'll move
things to accommodate that. Whatever he needs, we'll
work it out. What matters is that he's comfortable and at
home with us.
Someone from the home health company will be coming to
the hospital in about an hour to train me on how to use their
pumps & how to set up the tubing for everything for
Joshua's TPN & lipids. I will be fixing TPN each day as
part of the new routine. Since Joshua has been on TPN
before, I am familiar with the process involved, but I need
to learn how the company we'll be working with does
things and how their pumps work and how they want me to
be setting up the tubing and attachments and
whatnot. Joshua was only on 1 pump before; now he'll be
using 3, so even though I have an idea how to do this, there
will be some differences & new stuff to learn. The training
session will teach me what I need to know.
After training is over and Joshua wakes up, I'll sign his
discharge paperwork and we'll head home (after a quick
stop at the pharmacy to pick up another kiddo's
medication). Megan is having a talk with the kids there
about the need to not overwhelm Joshua with their
excitement, so I anticipate a wonderful homecoming. I am
SO looking forward to being back home with everyone and
I am hopeful that the next few weeks will be good ones for
my family.
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Written April 3, 2013 12:33pm by Kate Parker
Joshua's labs are whacked out today. High phosphorus, low
white cells and platelets, low protein (STILL ~ it is still at
the same level as when we came in and he hadn't been
eating then... TPN should be taking care of that), etc.
I'm waiting to hear from Dr. S & the pharmacist. The nurse
said there is no way he's getting out today and she'd be
surprised if it happens tomorrow. :(
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Written April 3, 2013 12:05am by Kate Parker
This update has to be short because the internet at the
hospital has been out and is now only sporadically
connecting.
Joshua is doing okay and aside from a mishap with his TPN
formula (that was rectified today) and some extended
periods of apnea, things are all right. I am anticipating his
being discharged from the hospital on Thursday as long as
his labs look all right.
I will update again when I have a more-solid internet
connection. Thank you for your continued prayers for
Joshua.
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Written March 31, 2013 4:19pm by Kate Parker
While Joshua was asleep
this morning, I "hid" plastic eggs (with candy inside)
around his hospital room. When he woke up, I gave him a
laser pointer so he could shine the red light on each egg as
he "found" it and then Emily fetched the egg & gave it to
him. He would investigate the contents of each egg with
glee and then resume the search for more. It was delightful
listening to his commentary & seeing the joy on his face as
he played the game.
Dr. S came by and hung out with us for a bit, playing with
Joshua and enjoying how well he is doing. Joshie has been
passing out candy to all of the nurses (he had a special little
gift for Dr. S, too) and telling them, "Happy Easter!" He's
been popping bubbles as I blow them & having fun with
glow sticks, too. I love seeing him happy and despite the
less-than-ideal surroundings & our preference to be with
our entire family to celebrate Easter, Emily, Joshua & I are
having a good day.
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Written March 31, 2013 12:38am by Kate Parker
Joshua had a REALLY good day today. He sat up multiple
times for 30+ minutes each time & he did not need
breakthrough pain medication. He did have to lay down
when his head started bothering him, but laying down was
enough to make him comfortable again. He has perked up
and is looking so much better. TPN agrees with him at this
point in time, which is such a HUGE relief!
A week ago, I was not questioning the doctors' saying we
are looking at weeks versus months now (for Joshua to
live). I agreed that he appeared to be very close to death.
Now, however, I am feeling like he is more stable and, as
such, it is harder to imagine him dying very soon. Time
will tell, of course, but for now, I am thankful and happy to
have my smiling, giggly little boy back.
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Written March 30, 2013 12:21am by Kate Parker
Today was calm & content. Joshua did not require any
breakthrough pain medication and he was in good spirits all
day. He is still not sitting up for more than a few minutes
at a time, but it's okay; he's happy and that's all that matters
in the grand scheme of things.
Charley came & brought Isaac for a long visit this
afternoon and Joshua was so happy to spend time with his
best friend. Isaac laid in bed with his brother & they
played games on the iPad together. It was super-sweet and
made me smile to see the two of them having fun. Charley
told Joshua that when he comes home, he & the other little
kids can plant jelly beans and grow candy. Obviously, my
9 and 11 year olds know how plants grow, but they will go
along with the game for their brother's enjoyment. Joshua
was enchanted by the idea and had fun telling his dad what
kinds of candy he wants to grow so that Charley would
know what colors of jelly bean seeds to get. He'll plant the
jelly beans and then later that night, when he's asleep,
Charley will switch out the jelly beans and place plastic
eggs with candy inside where the jelly beans were & plant
a sucker on top so Joshua knows where to dig (ala
uprooting a potato). It should be fun!
I learned today that after Joshua is discharged, we will be
working with a home health & home infusion company
affiliated with the hospital to provide his TPN each week &
to take care of his PCA pump. Everything is being set up
and from the sound of it, everyone is on-board with doing
what they can to meet Joshua's needs in the best possible
manner, which is great. We'll have 24 hour access to
nurses and they will come to our home (I don't know all the
details yet, such as how often we'll have a nurse visit) to
take care of things like filling the PCA with fentanyl
cartridges. I am very relieved to have this piece of the
puzzle falling into place. The nurses won't be coming over
for hours at a time to help with general care of
Joshua. They will come to do specific tasks (like dressing
changes) and after finishing them, will leave again. They
won't be there to allow me to take a nap or to give Joshua a
bath or give his meds or other things like that. That is a
different type of nursing care and is not what the home
health and home infusion companies provide. I'm fine with
it because we don't need that kind of nursing, but wanted to
clarify for anyone reading who might wonder.
At this point, Joshua is stable and doing well enough to go
home, but he has 3 more days of advancing his TPN before
he'll be at 100% (they start out giving him 20% of his
calories and fluids and then advance it another 20% each
day until it reaches 100% of his nutrition being given
intravenously) and then, once that is where it needs to be,
Dr. S said we'll switch Joshua to a PCA for his fentanyl
(right now he's getting a continuous IV drip) and then it
will take a day or two to get the dosages for his basal &
rescue rates tweaked (he will have an amount he gets every
hour and a button he can push to get a pre-measured dose
of extra medication several times per hour, if
needed). THEN, once that is all figured out, Dr. S can
write the final orders for everything and give them to the
discharge planner, who will make sure all of the equipment
we'll need is delivered to our home, which can take another
day or two. I was told that it will probably be later next
week when Joshua finally gets the go-ahead to leave the
hospital, which means we'll be getting out of here around
the same time Adam & Faith fly home, so that will be good
timing. While I'd like to get out of here sooner, I agree
with the team that it's more important to make absolutely
sure that everything is set up & fully organized, with all the
glitches we can think of worked out BEFORE we take
Joshua home so that, hopefully, the transition between
hospital and home will be seamless.
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Written March 28, 2013 9:34pm by Kate Parker
Today was much better. Last night, after having one of the
night nurses tell me that Joshua didn't need any pain
medication because "a child playing on an iPad is
obviously doing okay & is content" and "we don't like to
overmedicate any child," (which made me seriously want to
throttle her), I sent Dr. S an email detailing everything that
had happened and asking her to please do something to fix
the problem with the breakthrough dosing and
frequency. Three minutes later ~ LITERALLY ~ a nurse
was peeking his head in our room to say Dr. S had just
called & wanted him to tell me she had gotten my email
and would be responding, but in the meantime, he was to
increase the basal rate of Joshua's fentanyl drip by 25% and
from now on, Joshua can get breakthrough doses on request
and regardless of the nurses' assessment. Ha! I could have
kissed Dr. S! Her email arrived in my inbox 10 minutes
later. She apologized for what had happened and said she
wished the nurses had told her about Joshua's pain when
she had spoken with them repeatedly throughout the day. I
quickly shot back an email response telling her that I had
specifically requested two nurses call her and that one of
them had told me she (Dr. S) had refused to change the
frequency of Joshua's breakthrough medication doses. Dr.
S didn't respond to me via email again, but I am fairly sure
she had words for the nurses based on the conversation she
& I had when she came to see Joshua this morning. I have
the cell & home numbers of the nursing clinical coordinator
and will chat with her about this situation, too. If nothing
else, the pediatric nurses (some of them, at least) need to be
educated about the differences in manifestation and
reaction to pain in a typical kid and one with chronic
pain. They also need to be reminded that parents know
their kids better than nurses do and it behooves them to
listen to the parents. Oh, and perhaps a little reminder that
lying to a parent about what a doctor supposedly said is
REALLY stupid, especially when that parent isn't afraid to
email the doctor (or call her) to get her child what he needs
& the truth of what was or was not said will be revealed.
Yeah, I was steamed. But as a result of the wonderful Dr.
S's changes, Joshua's pain was well-controlled today and he
had a good day, which makes yesterday's fiascos easier to
forgive. The definition of a "good day" is different now. A
good day for Joshua is one where his head doesn't hurt
excessively, where he enjoys playing some games on his
iPad & watching a few episodes of SpongeBob and Phineas
& Ferb, where he smiles and maybe even giggles. It's one
where he chatters and kicks his legs up in the air as he lays
on his back. It's strikingly different than even just a few
weeks ago. I was happy that today was good, though. I'll
take it and thank God for it. Joshie did have a few
disappointing things pop up, though. Any time he drank
anything ~ and he only drinks an ounce or two at a time
now ~ he immediately said his belly hurt & requested that I
drain it out through his g-tube. He also seems to be losing
his sense of taste. He will put a bite of something in his
mouth, dejectedly tell me that he can't taste it, and ask if I
can fix it. Sadness overload for this mom. Despite those
setbacks, though, it really was a good day.
TPN was started late last night. It is a complicated (to me)
set-up! He has 3 lines coming from 3 pumps that all feed
into 1 central line, with an extra "pigtail" port for
administration of IV medications. One of my sweet friends
offered to to make some line wraps (a fabric tube with
elastic at both ends) to keep all of the cords from tangling
and getting wrapped around things (like wheelchair wheels)
or tugged on by siblings or puppy paws (thank you,
Mel!). I know that I'll get used to the new set-up, but
honestly, because this is unlike anything I've dealt with
before, it seems pretty intimidating right now. Thankfully,
I've got several days to get more familiar with things before
he gets discharged and someone from the home health
company will come here before we leave to make sure I
know how to set everything up on my own. I'm also
fortunate to have a great friend whose son is TPNdependent and she has been a wealth of information & help
for me today, hooking me up with the names of products
that will make dressing changes easier & teaching me
(from 3000 miles away, via phone) how to secure the lines
so they won't hurt Joshua if they get tugged on and how to
transport/manage 3 pumps & bags of fluid when I have to
do things like put Joshua in his car seat and then transfer to
his wheelchair. I am so very thankful for God's provision
of friends who have "been there, done that" experience they
are willing to share with me in order to make this transition
to a "new normal" easier.
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Written March 27, 2013 6:14pm by Kate Parker
As you can see, the donut
that Aunt Carolyn brought Joshua is huge! It is wider than
his face and almost as long. If you look in the "photos"
section here, I've added a second picture since I can attach
only 1 picture per journal entry. Joshua was thrilled to have
his wish for a donut bigger than his head granted. Thank
you, Carolyn! He ate a small bit of it and thoroughly
enjoyed the treat (the rest is put away for when he wants
more later).
Joshua has been awake for almost 8 hours and is just now
dozing off for a nap. He has gotten 3 breakthrough doses
of pain medication today & has asked twice for more
medicine but been told it's too soon for more. I'll be
chatting with the pediatrician tonight about increasing the
basal dose on his pump because I'm not okay with Joshua
having to "deal" with pain for hours when someone thinks
he can get meds only every 4 hours At this stage of things,
him hurting when there is plenty of medication that we
could give him to knock the pain out is unacceptable to
me. Whenever he's been in PICU, he was able to have
fentanyl every hour, if needed, so this whole "he has to wait
4 hours" is ridiculous. I'm confident it's something that will
be straightened out once I can contact Joshua's doctor.
As part of the process for formulating his TPN, Joshua was
weighed today. On Friday, when he was admitted, he
weighed 27.4 kg, or 60.28 pounds. Today, he weighs 21.7
kg, or 47.74 pounds. That is a 12.54 pound weight loss in 5
days, which gives a person a fairly clear understanding of
how little Joshua eats by mouth (since he hasn't gotten fed
more than a few ounces of formula in the past 5 days). I'm
glad we're starting TPN tonight. I'm hoping that once he
begins getting calories in a way that doesn't cause distress
for his belly, Joshua will maybe have more energy and perk
up and surprise everyone.
After reading a comment left here, I asked the nurse if
fentanyl & TPN can be safely run simultaneously in the
same line since Joshua has just a single lumen central
venous catheter and was informed that the pharmacist
checked into that question already & found that if the TPN
is formulated in a specific way, then it it compatible with
fentanyl. As such, running both TPN and fentanyl at the
same time in his central line will be fine.
The social worker came by and told me it sounds like the
home health care company will be able to manage the PCA
pump for Joshua, so I am cautiously optimistic (waiting to
get confirmation that it's a done deal). I asked, "So we
might be able to get out of here by the end of the week?"
and she answered that she thought Dr. S was talking more
like the beginning of next week. I'm happy that we're
moving in the direction toward getting Joshua home and
am thinking that having a few extra days to make sure his
fentanyl dosage is adequate for pain control even when he's
moving around or sitting up is probably going to work in
our favor.
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Written March 27, 2013 11:52am by Kate Parker
Joshua woke at 8:40am, happy & smiling. "Good
morning," he said with a smile, as though it was not
insanely unusual for him to be conscious at that hour. Dr. S
came in at 9:20 and was shocked (happily so) to hear
Joshua singing along to a commercial. When asked how he
was doing, the answer was, "Nothing hurts! I feel
GREAT!" He hasn't wanted to sit up yet today, but Dr. S
& I are happy with how good he's feeling while he lays
down.
A friend brought Joshua a HUGE donut, saying that she has
been thinking about it ever since he said he wanted a donut
as big as his head. He didn't want to eat it yet, but when he
does, I am soooo getting a picture (which I will share)!
He has played some of our silly games for the first time in a
long time, such as the one where we rub noses as we move
our heads back and forth while saying 'nosy nosy nosy" and
giggling. He has hugged me and told me I "pell dood"
(smell good) and asked why. When I answered that I put
on the perfume that I know he likes, he smiled & said,
"Dood!"
Loving that the day has started this way. Hoping & praying
it continues.
Dr. S said the plan is to start TPN at 5pm if the pharmacist
has it ready. If not, we'll start tomorrow. Today should
bring word about the PCA pump & home health care (and
whether it's a go or not), too. I'll update after I know
something.
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Written March 26, 2013 10:55pm by Kate Parker
Today has been pretty low-key. I was blessed to have a
long talk (and cry) with one of my friends while both Emily
& Joshua slept. Then another friend stopped by just to give
me a hug, which was an answer to a prayer of my heart
because I had told God this morning that I really needed a
hug & someone to share my sadness. It was beautiful to
me that God cares about even the tiniest details. After
spending time with my two friends, I felt much, *much*
better and able to cope with the day ahead.
Joshua slept in & had a short burst of energy when he woke
up. He was full of giggles as I repeatedly kissed his feet
and teased him about them being stinky and the sound of
his laughter filled my heart with joy. Then Charley brought
the kids to visit and that was another ray of sunshine in my
day. It was good for everyone to spend time together after
4 days apart and we were able to get Joshua into his
wheelchair and outside for a short trip to the hospital
garden where he & the other kids fed the fish in one of the
ponds, which everyone enjoyed. Afterward, Joshua played
on his iPad for a little while and then he went to sleep
around 5pm.
Dr. S was busy making calls to the pharmacist &
nutritionist to get TPN set up for Joshua. He'll have labs
drawn tomorrow morning (from his port ~ painless for him
& they'll draw the blood while he sleeps) to help them
calculate the formula Joshua will get for his calories &
fluids through his central line. She came by to talk this
morning & again this evening to ensure we were on the
same page regarding every choice being made (we are) and
to let me know that if the home health care company will
accept Joshua as a client and if insurance will cover a few
weeks of TPN, then we should be able to take him home in
3-4 days.
One of the hospital social workers who was working with
the discharge planner to get things set up came by to talk
after Dr. S suggested to her that it might be helpful. I had
not thought it would offer any benefit to sit down with the
social worker, so I was surprised by how good it felt to be
able to "unload" to a nonjudgmental, impartial stranger
who was there to help me. As we hugged after our talk, I
was surprised by how much lighter I felt. She told me I
need to make time for the meltdowns. I told her I had had
one just this morning while I talked on the phone with a
friend and she smiled and said, "Good!" She's going to
come back tomorrow morning to talk some more.
This evening, another sweet friend brought Emily & me
dinner from a Mexican restaurant in town. Chicken
enchiladas were a wonderful treat and a welcome break
from hospital fare.
Overall, it was a day of rest for Joshua & me as people
worked behind the scenes to get things set up so that my
little guy can go home. I am thankful for the mercies God
showered me with today because I needed the support more
than I realized. He reminded me of His promise to
surround me with a cloud of witnesses. It's a promise I am
most grateful for.
Joshua has just woken up after his 5.5 hour nap, so I will
wrap this up for the night. Thank you to everyone who is
leaving comments and caring so much about Joshua & me
(and the rest of my family). Your words bolster my spirits
& help me to feel much less alone.
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Written March 25, 2013 11:24pm by Kate Parker
Today dealt a tough blow. Joshua's stomach pain & head
pain increased as the hours of feeding him via his g-tube
went by. After multiple doses of breakthrough fentanyl
were needed & Joshua was still complaining of his head
hurting badly, the doctor stopped his feeds, increased his
IV fluids & we all just kind of agreed that things are not
improving.
I received a call from the palliative care doctor & nurse at
Emanuel and though it was a productive discussion, it was
emotionally hard. Tomorrow, they will be talking with Dr.
S about putting Joshua on a short trial of TPN, but Dr. G
was clear that even if Joshua is on TPN, he still may not
live 3 more weeks. She is also going to talk to Dr. S about
putting Joshua back on hospice so that we can get him on a
fentanyl PCA pump at home. His gut is not absorbing
medications efficiently anymore, which means Joshua now
needs IV pain meds to keep him from hurting. As things
progress, we are really going to need IV meds in order to
stay on top of his pain and keep him comfortable,
especially if we want to be able to keep him at home
(which we do since Joshua has made it clear that he wants
to die at home, not in the hospital). I found it ironic that I
had this conversation with the palliative care team today,
March 25th, which is the day I learned about Joshua's
chromosome abnormality that would greatly shorten his life
(in 2011). Funny how those things happen, huh?
Joshua is sleeping now. As he dozed off, I told him quietly
that I love him & he sleepily responded, "I love you,
too." I am praying that when he wakes up tomorrow, he
will be feeling much better since he's not getting fed by gtube anymore. I'm hoping that we can get things figured
out & set up so that I can take Joshie home soon. If the
doctors are correct and we don't have a lot of time left, I
want to get my little guy out of here and home where he
belongs, surrounded by the family who adores him.
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Written March 25, 2013 12:34pm by Kate Parker
Joshua woke up a bit after 4pm yesterday. He was able to
sit up for a bit, but then needed to lay back down due to
head pain. Within an hour of being awake, he was
requesting extra pain medication because his head hurt and
he stayed laying down the rest of the day. He did not throw
up, but by 5 hours after waking, he was moaning and
saying his belly hurt and then he went to sleep, which we
think was an escape mechanism.
This morning, we started quarter-strength feeds ~ 3 parts
pedialyte + 1 part formula ~ and after an hour, Joshua's
once again saying his head hurts badly & he's getting
breakthrough fentanyl (his breakthrough dose is twice his
hourly dose ~ 100mcg). His nurse called the pediatrician
(not Dr. S, as she does not work on Mondays) to discuss
what is happening and the ped made some changes. Now,
instead of getting 70ml/hr of formula/pedialyte through his
g-tube, he's getting 35ml/hr through his g-tube and 35ml/hr
of IV saline. The ped is trying to ascertain if Joshua can
tolerate *any* feed through his gut or if he is going to need
to get his calories/fluids via IV only.
The good news is that Joshua remains happy & content
while laying down. His head doesn't hurt badly when he's
in that position, so he keeps himself pretty flat.
It is really weird that the one day Joshua could sit up, painfree & without needing any breakthrough medication, was
the day we did not feed him anything through his gut. I
believe there is a correlation and it's autonomic in
nature. No one is arguing that; they just need to make a
strong case if they are going to successfully petition
insurance to pay for TPN for a child with an end-stage
condition who is not anticipated to live much
longer. Insurance doesn't care that the child has a goal he is
trying to reach. If we can't get Joshua tolerating enough
fluids to keep him adequately hydrated and TPN can't be
ordered, it will leave us in an unhappy place that I don't
want to talk about right now.
Joshie said he was hungry, so I gave him a quarter-sized
piece of chicken strip. He nibbled half of it and proclaimed
that he was really full and then told me that even though he
was thirsty, he didn't want to drink anything because his
belly already hurt a little and he knew if he drank anything,
his stomach would hurt a lot. *sigh* I'm deeply sad for my
sweet little boy. I knew about the "big things" that could
take his life, but no one ever mentioned all of the "little
things" that could happen as Joshua's condition
progressed. Perhaps no one knew. Perhaps no one thought
about what deterioration of the brain stem would look
like. I'll admit that it's pretty tough to be connecting the
dots AFTER the symptoms have already shown up. It
would be a bit easier (I think) if we had some idea of what
else Joshua might have to experience before he dies. This
whole not-having-a-road-map situation is the pits.
He's telling me his head hurts again, so I need to go get the
nurse to call the doctor to authorize yet another dose of
fentanyl. I am hoping the doctor tells us to stop the feeds
entirely. I want Joshua's days to be happy ones, not like
what he's had for 6 of the past 7 days.
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Written March 24, 2013 5:19pm by Kate Parker
Nothing to report yet today. Joshua is still asleep. He's been
getting a verrrrry slow continuous feed of pedialyte since
this morning & is tolerating it (no waking up to vomit).
Emily & I are watching an NCIS marathon. It's a good day
of "respite", as Dr. S termed it.
I'll update again later if there's anything noteworthy to
share. If I don't write again today, know that we had a
restful day and I'll update again tomorrow.
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Written March 23, 2013 7:23pm by Kate Parker
Dr. S came to the hospital so we could have a long talk
about Joshua & where things are going. I learned that when
a chronically-ill person is getting closer to dying, they will
eat and drink a lot less & basically slowly dehydrate
themselves as other body systems begin working less
effectively. It is not painful and they do not suffer. It is not
like a Terry Schiavo situation where a person who is fully
capable of digesting food/liquid suddenly gets sustenance
taken away. It is a natural process. From all appearances,
this is happening with Joshua. He isn't eating more than a
couple tablespoons of food each day (if that) and he isn't
drinking by mouth, nor is he getting fed via g-tube, and he's
perfectly content.
We are seeing increasing signs of systems struggling: he is
having more trouble swallowing & saliva accumulates in
his mouth, prompting us to remind him to swallow or spit it
out (he often opts for spitting). His speech is getting more
difficult to understand. He has a very difficult time
urinating. His temperature & heart rate fluctuate wildly. His
respiration rate is low when he's awake & extremely low
when he's sleeping. Sometimes he forgets to breathe
altogether for a brief time. He gets nauseated at various
times during the day. All of this is related to progressing
autonomic nervous system dysfunction (dysautonomia),
which is directly related to his brain stem deterioration.
We will be taking things one day at a time while he is in the
hospital & our treatment plan for Joshua will evolve as we
see how he does in the next few days. Tomorrow, we will
start him on a continuous feed of pedialyte and see how he
handles it. If he does not have extreme nausea, vomiting &
/or diarrhea, we will try giving him 50/50 formula/pedialyte
on Monday at a very slow rate and evaluate how he handles
that. If he does all right, then we will spend Tuesday trying
full-strength formula and seeing if we can get him to
tolerate the rate we need him to handle if he is going to
keep himself hydrated (68 ml per hour). If he can't handle
that, we will start him on TPN (IV nutrition & fluids) in
order to help him reach his goal of being the ring guy in
Adam & Faith's wedding (23 days from today). Despite our
efforts to support his GI tract & provide adequate calories
& fluid, we can do absolutely nothing to stop the ongoing
progression of dysautonomia and if things continue at the
rate they are currently moving, Joshua may not live a lot
longer. Dr. S DID say that there is no way to know for sure,
of course, since we're in uncharted waters and Joshie is
definitely doing things his own way, but with what we are
seeing and new symptoms developing almost every day,
she is not feeling very encouraged.
She agreed with my thoughts about the monitors and after
making sure we could legally stop using the heart
respiration rate monitors while he's on an IV of fentanyl, a
nurse came in to remove the patches & turn off those
screens, so now he's only on a pulse ox for monitoring
(with the parameter set low enough that it will only alarm if
things are truly worrisome by Joshua's standards) and we
are both enjoying the quiet of not hearing alarms blaring all
day long.
Emotionally, I'm feeling pretty numb right now. It's been
almost 2 years to the day since I learned Joshua had a
chromosome abnormality that was incompatible with a
normal lifespan, but as crazy as it may sound, while I knew
he would eventually die, a part of me didn't think it would
actually happen. After all, it's been 2 years and he's still
here, right? A part of me thought that maybe he'd surprise
the doctors by living for years to come. Most of me isn't
shocked... just stunned. It's one thing to theoretically know
that eventually, this awful thing is going to happen. It's
something quite different to have the theory turning into
actuality. The emotions that accompany *that* (for me) are
kind of all over the place. For tonight, I'm going to thank
God that I have this time with Joshua in the hospital where
I don't have to attend to other children or make meals or do
laundry or run errands. I'm going to be grateful for this
undivided time and I'm going to enjoy being with my little
boy, just like always. I'll try to make the most of each day,
just like Joshie does, and not look too far into the future.
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Written March 23, 2013 10:33am by Kate Parker
Soooo... Joshua's respiration rate alarm drops if he goes
below 10 breaths per minute. Did you know that Joshua
breathes less than 10 times per minute ALL. THE. TIME (I
did)? Granted, I appreciated the alarm when he completely
stopped breathing at 4am, but that was a much different,
"heysomeonegetyourbuttinhererightnowthiskidisn'tbreathin
g" alarm and NO ONE was going to sleep through that! A
firm jostle encouraged Joshie to inhale again and all was
fine, minus the adrenaline spike. Anyway, between the
respiration alarm, his heart rate alarm, his O2 alarm and the
mechanical failure of one of his pumps in the middle of the
night (that one is a high-pitched, solid buzz that sounds just
like a flat-line sound in a tv show, btw. Again, great way to
get a mother's adrenaline flowing when being woken to it),
sleep was not very forthcoming. I gave up at 8am and just
got up. Emily is still conked out. The alarms don't disturb
her at all, which doesn't surprise me since she's my kid who
slept through a smoke alarm going off 2 feet from her head.
She's on the opposite side of the room as Joshua versus
sharing a bed with him (which, incidentally, also does not
lend itself to good-quality sleep, but how could I refuse
when he asked me to sleep beside him?). Yeah, I'm being
whiny, but I'm tired. Today I will ask whichever
pediatrician is on call if the parameters for his heart rate
and respiration rate can be lowered significantly more than
what they're currently at (60 for heart rate, 10 for
respiration rate). Dr. S agreed to set the alarm for O2 at
85% yesterday, so I am hopeful that I can get them to
change the settings for the other two. I doubt they'll agree
to the rates I'm hoping for (40 for heart & 5 for respiration
rate), but honestly, since Joshua is a DNR, it's not like they
would DO anything, anyway, and I would prefer to get
some sleep versus having almost-constant reminders that
*something* abnormal is going on.
He is sleeping peacefully, sucking on his tongue,
completely undisturbed by the alarms, which is a good
thing. I gave him his 8am meds (the nurse handed me the
syringes & I pushed them into his g-tube) and he didn't
flinch or wake up from immediate nausea, so that's a good
sign. I'll update again later today after Joshie is awake and
I've spoken with his doctor.
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Written March 23, 2013 2:46am by Kate Parker
After 21 hours, Joshua finally produced some urine. His
labs look beautiful ~ no sign of illness whatsoever. He's
had no diarrhea since we stopped feeding him via gtube. The only time he complains of nausea is after getting
g-tube meds. His headache is not as severe and he can sit
up for about 5-10 minutes before needing to lay down once
more. He's sat up three time since arriving ~ each time to
pee ~ and the rest of the time has been spent lying down.
He took a 4 hour nap this afternoon/early evening. In
addition to his other pain meds, he's getting a continuous
drip of IV fentanyl, which is definitely helping him to be
more comfortable. He has played on his iPad this evening
& chattered to himself a lot as he did, which was sweet to
listen to. All of his symptoms/behavior indicate his brain
stem is being more problematic, but for tonight, I am happy
that he is smiley & feeling better. It's a little concerning to
me that his happiness & feeling better comes from NOT
putting formula & water through his g-tube, but I'm sure
everything will get figured out in the next few days, so I'm
not going to worry about it tonight.
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Written March 22, 2013 4:48pm by Kate Parker
We're at the hospital. Joshua has his port accessed & is
getting a large bolus of saline to begin rehydrating him (he
hasn't peed since 10:30pm last night). He is not acting sick
and Dr. S doesn't think he's ill, either, but we're doing labs
& will check a stool sample for rotovirus & c-diff as a "just
in case". Both of us would be utterly shocked if anything
came back positive. Diarrhea, nausea, vomiting, vision
disturbances & flushing are all symptoms associated with
an autonomic system that is not functioning properly
(dysautonomia). Since the autonomic system is controlled
by the brain stem, it is in-keeping with Joshua's condition
that we would see these symptoms as his brain stem
progressively deteriorates. It's very unfortunate, as Dr. S
phrased it, but sadly, not surprising. The GI tract's
peristaltic action (what moves food/fluid from mouth to
anus) is also controlled by the autonomic nervous system,
so Joshua's new inability to tolerate feeds at the rate he was
at just last week is also a symptom we can attribute to
dysautonomia. The newest symptom that he's having is
flushing of half his face. The right side gets red while the
left side stays pale. It's interesting-looking, but thankfully
not anything to worry about. It's just one more thing
pointing to what is happening inside his little body.
As long as he lays flat, he is cheerful, and right now, he is
happily watching SpongeBob on Nickelodeon. His nausea
is gone now that we are not feeding him through his g-tube
and he is not sitting, even in a semi-reclined position. I am
thankful that he *is* happy and content in this
position. This would be much more difficult if he was
miserable no matter how he was positioned.
He'll be getting a continual drip of IV fentanyl to control
his pain once pharmacy gets over being unnerved by the
dosing prescribed by Dr. S and brings it to the floor. It
happens each time Joshua is admitted now, but I am
hopeful that since we did the same routine just a few weeks
ago, the process might go faster this time. I'm not
concerned; I brought all of Joshua's meds with me & Dr. S
told me that if it takes pharmacy awhile to get the fentanyl
going, I can administer oxycodone as needed.
Megan is at home taking care of the other kids & I brought
Emily with me at Joshua's request. It works out well since
she can stay with her brother while I step out of the room to
talk with doctors. Joshie doesn't like being alone, so I'm
happy Emily came along. She provides comic relief, which
is a much-appreciated skill. Charley has today & tomorrow
off work, so he'll come to the hospital tomorrow to see his
little boy.
I've explained to Joshua that he won't be here permanently
and at the suggestion of a friend, I brought the paper chain
that is marking down the days until Adam & Faith come
home so that he can continue tearing off one ring per night
and have something tangible to look at as a reminder of
what he's fighting for. I think that will help.
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Written March 22, 2013 10:37am by Kate Parker
Dr. S called. We're admitting Joshua today. A few days of
IV fluids & gut rest to see if we can turn this around or if
his gut is permanently hit due to progressing autonomic
dysfunction, in which case we'll move to putting him on
TPN. Praying that it's just a weird viral thing and that
giving his gut rest from needing to digest pedialyte/formula
will stop his nausea and diarrhea and help him to start
feeling better. Please pray for Joshua to not "give up" in the
hospital and for absolutely-clear results that give us
definitive direction for his care. I'll update as things go
along.
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Written March 22, 2013 1:09am by Kate Parker
Things aren't really going in the direction we need them to.
After 20 hours of sleeping, Joshua woke (at 4pm) and was
able to walk to the family room by himself, where he
immediately laid down on the couch & stayed for the
evening. He tolerated 55 ml/hr of pedialyte+formula (half
& half) fairly well, though he complained of "feeling
yucky" several times & requested that I stop his feed
completely so he would not throw up. I would comply,
then re-start the pump at a slower rate and gradually
increase it back to 55 ml/hr. I could not get him to tolerate
a faster rate, which means he was at least 13 ml/hr too slow
to keep up with his minimum fluid requirement. I realize
that may not sound like much & really, in one hour, it's not
a lot, but over the course of 24 hours, it adds up to just
under 10.5 ounces, which is almost 20% of Joshua's daily
fluid need, so it's significant. He continues to lose fluid via
diarrhea, too, which is another source of quick dehydration
that is concerning. He was able to drink about 4 ounces
with no vomiting, so that was good. He sat up for about 5
minutes before his head hurt badly & then he needed to lay
down again. Overall, he is more quiet than usual, but is still
happy. Today, he enjoyed directing Sarah on a Wii game ~
she played for him but did what he asked of her, which
worked out well.
I have to take him in for a port flush tomorrow, so I
emailed his pediatrician today to ask if we could do labs to
determine if Joshua has an illness (we'd see a viral shift on
the lab results) or if the symptoms are solely caused by
progressive dysautonomia. If he is not sick with some mild
virus, then it would seem his gut is being overtaxed now &
we might need to put him back on TPN and only use his GI
system for digesting medication. Dr. S wrote back and said
she will call me around 8am tomorrow to talk about the
day's plan and then we can meet for a long talk on Saturday
to discuss where we are going to go from here.
At this point, I am hoping we can switch him to TPN
because it would remove the concern about fluid balance &
caloric intake. Knowing that Joshua would be getting what
he needed to stay hydrated & fed via his central line
regardless of how his autonomic dysfunction progresses
would be reassuring to me. I don't want him to die of
dehydration or starvation and TPN would prevent that.
I don't know if Dr. S will want to admit Joshua to the
hospital tomorrow, but I won't be surprised if she
does. She told me that Joshua isn't a kiddo we can take a
"wait & see" approach with, so the fact that he is not
tolerating a continuous feed at the minimum rate necessary
to keep him hydrated and he is still battling nausea despite
our increasing the frequency of giving anti-emetic
medication and his head pain is not well-controlled despite
increasing the dosage of methadone & breakthrough doses
of oxycodone means Dr. S may recommend admitting
Joshie for a "tune up" in the hospital so we can tank him up
on IV fluids & meds & give his gut a complete rest before
attempting to restart g-tube feeds once more. As much as I
dislike needing to put him in the hospital at this stage of his
life, I would be okay with doing it (so would Joshua ~ I
talked to him about the possibility of going to the hospital
to get fluids & medicine to help make him feel better). I
feel like I need some outside help to get things turned
around and going in a better direction. I realize a
hospitalization may not succeed in achieving that goal, but
I would be amenable to trying if that is what Dr. S thinks
we should do.
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Written March 20, 2013 4:27pm by Kate Parker
Today is better in some ways, yet not in others. For those
who have left comments saying that they hope that
knowing so many are praying & caring brings me some
comfort, I want you to know that yes, it absolutely
does. Thank you for sharing in the ups & downs of
Joshua's life & for being a source of support &
encouragement to me. It IS helpful and even when there's
nothing that anyone can say that is going to make this
situation not hurt anymore, just knowing that others are
sharing my sadness helps because it tells me I am not
alone. It makes me smile through my tears to know that so
many people care about Joshua. Thank you. ((( virtual
hugs to you all )))
The increased methadone is helping Joshua to be
comfortable as long as he is laying down. He has had an
hour here & there where his head isn't hurting at all, but
more often, he says his head hurts "easy", which he
translates into feeling good. In other words, as long as he
lays flat, his head pain is mild enough that it doesn't bother
him. He is able to watch a movie or a sibling playing a
game on the Wii and he appears content & in no distress.
He hasn't yet attempted to play on his iPad or on the Wii,
himself, and he still needs things to be more quiet than
usual, so the other kids are being very thoughtful &
accommodating that to help keep their brother
comfortable. This pain control is a vast improvement over
the past few days and I am very relieved that the increased
methadone is helping while not over-sedating my boy.
On the flip side, however, is that Joshua still cannot sit up
or even slightly reclined without severe head pain &
nausea. He experiences nausea when we give his meds
even though we have slowed the rate at which we push the
medication in to a snail's pace ~ 3 days ago, we could push
20ml of medication into his tube in about 4 seconds. Just a
steady pressure on the plunger of the syringe & that was
it. Now I give 1-2ml, wait 5 seconds, give another 1-2ml,
wait another 5 seconds, and continue in this pattern until
the syringe is empty. 20ml takes a minute or more to push
in. Even at that slow rate, Joshua says he feels like he
might throw up.
It is discouraging to see how quickly things have changed,
but it's very consistent with how Joshua's been his entire
life. When he's good, he's really good, and when things
take a turn, he tanks quickly. I am still hopeful that we'll
see more improvement as the increased methadone dosing
takes full effect (that happens after 48 hours). I am praying
Joshua's ability to sit upright without pain will be restored.
Little man just threw up. I've adjusted his pedialyte to just
1.5 ounces per hour and will keep it that low for a bit to
help his belly settle (for comparison purposes, up until
yesterday, he was getting 3 ounces of water per hour for 10
hours at night & 6 ounces per hour of formula for 4 hours
during the day, and he drank 4-16 ounces of fluid by
mouth). We need him to tolerate 2.25 ounces per hour for
24 hours in order to maintain his minimum fluid
requirement so that he does not get dehydrated because as
soon as he gets even slightly dry, he goes into vomit
universe (part of his autonomic dysfunction), so I am a bit
concerned about his needing me to lower the rate from the
2.25 ounces per hour he's been getting since seeing the
doctor yesterday. If you are praying for Joshua, please pray
that we can maintain his fluid balance and keep him out of
the hospital.
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Written March 20, 2013 1:27am by Kate Parker
Today was a scary, sad day. The thought that so many are
praying for 28 more days for Joshua is both comforting &
devastating to me. Think about it ~ we are begging God to
let Joshua live for 4 more weeks. Four weeks? He is barely
7 years old! He should have DECADES ahead of him, not
merely weeks (or even months). The possibility that we
could have so little time remaining is a knife in my heart.
My precious little boy hugs my neck & blows me kisses &
smiles that beautiful smile of his that makes his eyes dance
& shine and I wonder HOW can God think I will be able to
survive losing him? Yes, I still believe He is working out a
plan that is for good, but interestingly, my head can know
& believe something & even be comforted by it, but my
feelings are off in another direction entirely. I don't want
my family's time with Joshua to end. Not in 4 weeks. Not
in 4 years. I realize what I want is not going to happen, but
tonight, the longing for a different ending than what is
coming is overpowering.
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Written March 19, 2013 9:35pm by Kate Parker
Okay. Phone call with Adam is done and he was able to
talk to Joshua, too, which was good for both of them.
Dr. W (neurosurgeon) and her new partner, Dr. B, both
carefully evaluated Joshua's CT scan & compared it with
previous scans. Ultimately, they decided that while the
results are not "normal," they are normal for Joshua. They
are 100% convinced this is not a shunt-related problem.
Instead, Dr. W believes this is condition progression. The
PA & I spoke about how Joshua had presented with the
same symptoms in October, 2011 ~ sudden inability to sit
up without screaming head pain & vomiting ~ and how,
had Dr. W not done surgery, he would not have had much
time left to live. The concern is that we are in this place
again, only this time, there is no option for surgery. We
need 4 weeks so he can be the best man at Adam & Faith's
wedding. I was told that they are sorry they can't fix this.
Dr. S (pediatrician) is questioning if Joshua might also have
a tummy bug, but since none of the other kids are sick, that
is probably not what is going on. As long as Joshua is
laying down, he doesn't feel nauseous, but when his head is
more upright, he feels the need to vomit. In a couple days,
when Dr. S is convinced this isn't a viral illness coupled
with condition progression, we'll discuss what anti-emetic
we can add to Joshua's medication regimen to potentially
lessen his nausea & maybe enable him to begin sitting
upright again. Right now, he gets zofran every 8 hours.
We'll probably move to giving him that every 6 hours and
then add a second medication, too.
The new palliative care doctor (Dr. G) increased Joshua's
methadone doses by 20%. It will take 48 hours for the full
effect to be seen and hopefully, it will be enough to get
Joshua out of pain while not over-sedating him.
Thank you SO MUCH for your prayers! It definitely
helps. Today has been frightening & stressful & while I
did not want Joshua's shunt to be messed up, I also really
did not want to hear that this looks like where we were in
October, 2011 and it is kind of devastating to have to face it
even though I knew this time would eventually come. A
large part of my stress/sadness today comes from knowing
Joshua & Adam are 8000 miles apart. If Adam were here, I
would still be scared, but I wouldn't be feeling like I have
to do everything humanly possible to keep Joshua
here. And that's how I do feel. I promised Adam I would
do everything in my power to keep Joshua "okay" until he
and Faith get home. I know there's not much I can actually
DO other than what I'm already doing every day, but still...
I'm the mom. These are my boys and I want to make things
okay for both of them. I can't stop Joshua from dying, but
dang, I am begging God to not take him before Adam gets
home. Joshua dying while Adam is gone would be horrible
and the thought of having to call Adam in the Philippines
and tell him his brother died makes me feel sick inside. It
is my fervent prayer that *that* scenario will not come to
pass.
There's more rolling around in my head, but I think if I start
typing, I will talk in circles and I don't want to do that right
now, so I'll end this for now and once again say "thank
you" for caring about Joshua & the rest of my family. Your
support is invaluable to me.
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Written March 19, 2013 8:56pm by Kate Parker
CT scan is normal for Joshua. Lots more going on, but need
to update Adam first (via phone). Will be back soon with
more details, but wanted to let you all know that it's not a
shunt malfunction.
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Written March 19, 2013 6:30pm by Kate Parker
At hospital doing CT scan. Will go back to Dr. S's to wait
for further direction/plan.
Sent from CaringBridge Mobile
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Written March 19, 2013 3:25pm by Kate Parker
Joshua woke around 10am with his head hurting. It got
steadily worse despite all attempts to bring the pain under
control & culminated with him vomiting. I would think
this was "just" him needing an increase in pain medication
except that this time, his pain is very positionrelated. When he lays flat, his head hurts "easy to medium"
(his description ~ his pain scale is 'easy, medium, hard &
super bad'), but when he sits up or tries to stand, it gets
super bad immediately. That concerns me and makes me
wonder if his VP shunt is getting occluded.
The ped is on the phone at this moment with the doctor in
Portland and I am awaiting a call to tell me what the plan
is. If Adam were home, I would be handling this crisis
much better because I could say, "Okay, we knew this was
coming someday," and I'd deal with it. But he's still out of
the country. He & Faith will be home in 18 days and their
wedding is in 4 weeks. Joshua still wants to be 'da ween
die' and is insisting that he is going to try to hang on until
Adam & Faith come home. Because that is his goal, I am
going to do all I can to help him reach it. Right now, he is
laying in a darkened room and he says his tummy doesn't
hurt and his head only hurts "easy". He said God is making
his head not hurt so much, so thank you for the prayers
because they are helping. I know the oxycodone helps, too,
but honestly, even after getting a huge amount, he was still
hurting tremendously & he cried out to God and pleaded,
"Please God, make my head not hurt," and within minutes,
he was saying his head didn't hurt except a little bit because
God made it not hurt. I'm not going to doubt the presence
& power of God, especially when Joshua is adamant about
what is helping.
Please pray that this is NOT his shunt and that we will get
his pain under control again by increasing his
methadone. And please pray that God will grant Joshua's
wish to be in his brother's wedding. After that, I won't ask
God to extend Joshua's life again & I will do my best to
accept that his time on earth is coming to an end, but I am
begging Him to give us this. For Joshua to be okay until
Adam & Faith get home & to allow and enable him to be
the best man/ring guy at their wedding.
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Written March 19, 2013 10:38am by Kate Parker
I sent an email to Dr. S last night, asking if she would
please contact Melissa (Dr. T's replacement palliative care
doctor at Emanuel) to ask about changing Joshua's
methadone dose. I emailed Dr. T last week (via his
photography website, which I know is SO professional, but
it was the only way I knew to get in touch with him),
asking if he was going to provide Dr. S & me with his
contact information so we can keep in touch regarding
Joshua's care. You know, since he assured me repeatedly
via email & in phone calls & in person when I saw him
(during our discussions about Bethany) that he would
always remain available to Dr. S & me for Joshua's care
even though he was changing jobs and going to a different
hospital? His response was that for now, he thinks it would
be better if we contact Melissa & Kathleen since his new
job doesn't allow him the independence that he had at
Emanuel and blah, blah, blah (other excuses/justifications ~
it is probably completely legit, but the feeling it left me
with was the same... that of being abandoned by the doctor
who was the head of my son's medical team). So... please
pray that not only can Dr. S contact Melissa, but that
Melissa (who has never met Joshua) will make very wise
choices for my little boy's care.
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Written March 19, 2013 1:09am by Kate Parker
It was a really hard day. Joshua's head pain never did go
away despite LOTS of oxycodone and he eventually went
to sleep. He had one desat down to 81% (while awake &
laying down) and after he fell asleep, his oxygen level
dipped to 83% frequently, but eventually he stabilized
again and then his oxygen stayed above 90%. It's now
11pm and he has just woken up, but is laying down because
he says his head is hurting. Megan is pulling up another
400mg dose of oxycodone and I anticipate that Joshie will
go back to sleep soon. I am hoping & praying that he will
feel much better tomorrow. I don't really understand what
is happening, physiologically, to cause his head to hurt so
much (it's especially bad when he stands up), but if it
continues, I will contact the palliative care doctor and see
about increasing Joshua's dose of methadone.
Thank you to everyone who has been & will continue
thinking about & praying for Joshua. I sincerely appreciate
it.
1am update: By midnight, Joshua was crying as he laid on
the couch, holding his head and asking if we could go to
bed because his head hurt so badly. He got his scheduled
meds and then Megan & I brought him upstairs and settled
him in for the night. I just sent an email to Dr. S to inform
her of what is going on & to request that she call Portland
for guidance regarding how to increase his methadone. We
have to do *something*.
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Written March 18, 2013 12:47pm by Kate Parker
Joshua woke because his head is hurting very badly. We've
given him the maximum amount of breakthrough
oxycodone that we can & he's had his scheduled oxycodone
& methadone & other medications, but it isn't bringing him
relief. He is laying on the couch, resting. He is very tired
(he doesn't usually wake up until 4pm or later), but in too
much pain to sleep. Please pray for his head to stop hurting
so much.

Written March 12, 2013 2:55am by Kate Parker
This day was full of blessings & glimpses of the love that
God has for His children. Not only did He give me a
special gift with Bethany (see her page for details), He
doubled my joy by giving Joshua a super-happy day.
Joshie had energy to go outside to play a light saber battle
with Isaac. He picked flowers & leaves and set them in a
pile that he called "my collection". He ate an entire peanut
butter & jelly sandwich (minus the crust) and asked to
drink milk from a "big boy cup" (no lid). He had no
breakthrough pain today, which was FANTASTIC! He
brought me a flower and a "very special leaf" that he said
he knew I'd love. Throughout the day, he would come over
to wherever I was just to give me a hug or a kiss and tell
me how much he loves me. He told me, out of the blue, that
he thinks we should adopt another baby girl and "give her
my name." I asked what he meant by that, saying with a
laugh, "I can't name a little girl 'Joshua' ~ that's a boy name
and it's YOUR name!" He smiled at me and clarified, "No,
not Joshua. My other name!" I asked, "Gabriel?" and he
nodded & asked, "What is the girl name like my name?" I
told him, "Gabrielle," then added, "Or Gabriella." Joshua
nodded again & announced decisively that we should adopt
a baby girl and name her Gabriella. He pronounced it
"Dab-ee-ewwa," which was pretty dang adorable. I grinned
and asked him why we should name her Gabriella, to which
he answered, "Because it's cute! Don't you agree?" I didn't
bother bursting my little guy's bubble by pointing out that I
have no plans to adopt again. I just smiled and agreed that
Gabriella was a very cute name, which pleased him.
After the past few tough days, having my smiley, playful
Joshua back again was such a relief and a joy. Hours of
listening to his cheery voice and giggles & feeling his little
arms around my neck & his little kisses filled me with a
happiness that defies explanation. Tonight, I thank God for
the gift of this day, for the blessings in the little things that
mean so very, very much.
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Written March 11, 2013 3:07am by Kate Parker
The past few days have had some tough moments for
Joshua. He's had two days of sleeping just under 23 hours
out of 24, which is harder on the family than him since we
miss his presence when he is sleeping the day away.
Tonight, he woke at 6pm and was asleep again by
7:30pm. He had tripped and fallen a short time after
waking up and while he was not injured, the jarring as he
landed ricocheted up to his head and caused intense
pain. Multiple doses of oxycodone didn't rid him of the
headache, so Joshua escaped the pain by going to sleep. I
thought that he was out for the night, but shortly after
midnight, he woke up with a smile and wanted to eat
peanut butter toast. He is a tough little guy, for sure!
He is still tired at all times and he's been needing help
blowing off CO2 more frequently each day. We count
down the days until Adam comes home and Joshie reminds
us all that he is going to heaven after the wedding.
On March 7th, when Joshua woke & came downstairs to
feed his fish, I had to gently explain that Captain Gills had
died. Molly, one of the cats, had knocked the fish bowl
over & mauled the betta, but I did not give Joshua that last
detail. He had a few crying bouts and he emphatically
rejected his siblings' suggestion of a new fish, saying, "You
can't replace him! I'll just wait to see him in heaven."
Megan, Joshua & I prayed together and asked God to
please put Captain Gills in a special tank in Joshua's room
so that when Joshie goes to heaven, he can see his fishy
friend again. *sigh*
He's had some recurring dreams that are causing him
anxiety ~ he dreams that someone breaks into our house &
tries to kidnap him. Each time, he half-wakes up and asks
me if I will get Adam if someone tries to grab him. I
always assure him that I will, promise that I won't let
anyone hurt him and then he settles back down to
sleep. I'm no psychologist, but it seems obvious that
Joshua is missing his big brother. They have a special
bond. Always have. It's apparent to anyone who sees them
together. As such, I'm not surprised that Joshua is anxious
about Adam being gone. It's also why I'm not surprised
that he is determined to live long enough to be the ring guy
& best man for his brother's wedding. I feel sad for him
having bad dreams, though.
Overall, Joshua is hanging in and doing all right. It's just
been a rough few days. I'm hopeful that tomorrow will be a
happy day for him, though. My little guy deserves it!
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Written March 5, 2013 3:03pm by Kate Parker
Today is my birthday. I am now 43 years old. I remember
when that seemed old. You know, back when I was about
10! LOL
Joshua has been a happy little sweetheart the past few days.
He carries his new Perry the Platypus pillow pet with him
wherever he goes and chats with it as though it's a
person. It's actually pretty dang adorable listening to him
ask Perry a question and then adopt a high, squeaky voice
as Perry "answers". He sits and plays Legos with David &
Isaac with Perry keeping watch beside him. It's incredibly
sweet to watch my three little boys playing together and I
am grateful for the good days Joshie is having.
He's been having a little bit more head pain, but we give
him extra pain medicine and that's been sufficient to get
him back to a place of comfort. Thankfully, his
breakthrough pain is not occurring frequently, nor is he
desatting an excessive amount these days.
I'm praying that this next month is one of stability for
Joshua since Adam left for the Philippines today and will
be gone for 4 weeks. It would be truly horrifying to have
something happen to Joshua and then have to tell Adam
about it via Skype or phone, so I am praying it doesn't
happen.
For those who ordered magnets, I am sending them out
today. Thank you so much for being a part of my little
fundraiser ~ it helps with the medication co-pays for both
Joshua & Bethany, which is a huge blessing. If anyone else
is interested in a magnet, email me at
parkerkidsmagnet@gmail.com.
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Written March 3, 2013 2:51am by Kate Parker
Today was a wonderful day. Megan, Adam & I decorated
for Joshua's birthday this morning while he was sleeping. I
wrapped his presents and put them in a stack on the dining
room table for him. I wrote little notes on each gift
(excerpts from our special book, phrases Joshua & I say to
each other, etc) and had rivers of tears streaming from my
eyes by the time I was done. The very real possibility that
this would be the last time I wrapped birthday gifts for my
little boy hit hard. At the time, I hoped that I had gotten my
crying for the day over with and would have only smiles
once Joshie woke for his "All Perry Party" (from Phineas &
Ferb) birthday celebration. I'm happy to report that that is
exactly what happened.
Joshua slept until 5pm. Once he came downstairs, he was
barraged with birthday greetings from his siblings and
needed some snuggle time with me to finish waking fully
(which made me happy ~ I love cuggling with my boy).
Then he was ready & excited to open presents! About
halfway through his gifts, he was obviously tiring, but he
didn't want to take a break. As a result, after the gifts were
opened, he was exhausted and wanted to cuggle with me in
the rocking chair. The other kids had been playing with
Perry the Platypus masks that were part of a "Pin the Tail
on Perry" game and they donned the masks once again to
amuse Joshua as he rested. He wound up laughing at his
siblings' antics, which pleased everyone.
When he was refreshed, Joshua wanted to break his
pinata. Adam placed the hook for the pinata on a swivel
that he slid onto a broom handle and then he held it up for
the kids to pummel. Joshua would take a few swings, then
announce that he needed to rest, which would give another
child the opportunity to bash the pinata. It took almost 6
minutes of laughing fun before Perry the Platypus broke
into pieces, dumping candy on the living room floor. Joshie
laid on the floor and laughed, "It's raining candy on me!" It
was super cute! All of the other little kids scooped up the
treats and placed them in a big bowl while Joshua pushed
himself into a sitting position so he could unwrap and eat a
peanut butter cup.
Birthday dinner in our house is always whatever the
birthday person wants. Joshua chose Burger King, so
Adam, David, the birthday boy & I drove to pick up food
for everyone. When we got home, Joshua ate one chicken
nugget & a few french fries, then requested some
oxycodone for a headache and laid on the couch to rest.
After about an hour, he felt better, so we played "Pin the
Tail on Perry", which was pretty hilarious. Emily, David,
Sarah & Isaac were all blindfolded for their turns, but
Joshua didn't want to wear the mask, so Emily covered his
eyes with her hands. He took four turns and on the last
one, he suggested that I should "just cover one eye." So I
did (of course). Not surprisingly, he placed Perry's tail
almost perfectly on that last try! Everyone busted up
laughing and Joshua did a little dance, chanting, "Go Dado-wah! Go Da-do-wah! I da bet!" (translated: "Go
Joshua! Go Joshua! I'm the best!"). It was an awesome
moment!
Then it was time for cake & ice cream. Joshua had wanted
a cupcake the size of his head with chocolate frosting &
chocolate sprinkles, so I obliged with a huge cupcake made
from two cake mixes (one chocolate, one yellow). I
surprised him, however, by scooping out some of the
insides of the cakes & stuffing mini bags of m&m's and
foil-wrapped chocolate bunnies inside, thus making his
giant cupcake a pinata. The look on his face when I cut
into the cake and the candy fell out was priceless ~ a
mixture of delighted shock & awe ~ and will be a memory
I will treasure when I think back on his 7th birthday
celebration. When we sang "Happy Birthday" to him,
Joshua beamed throughout the song & then blew out his
candles. It took multiple attempts to extinguish the flames
the first time.... and then they re-lit themselves! It was so
much fun to watch him blow out the candles over and
over. He wound up getting help from Adam & me after he
got tired & couldn't really blow anymore, which was no big
deal. Joshua was happy and giggling about the candles that
wouldn't stay out. He loved the trick, which was awesome
and made everyone else smile.
I put together an album to
share: http://s1309.beta.photobucket.com/user/kpmomof8/
story/55765
Thank you for all of the birthday wishes for Joshua. It
brought a big smile to my face to come here today & see so
many comments & know that so many people care about
my little boy. I don't know how to tell you how much it
means to me to know Joshie's life matters to more than just
my family. Thank you for coming here, for following
Joshua's story, for investing your time & emotions & for
"talking" to me through comments & emails. You help me
to get through the tough times and you make the happy
times even sweeter through sharing in my joy.
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Written March 2, 2013 2:32am by Kate Parker
Happy 7th Birthday to my Joshiebear!
What an incredible milestone for him to have reached ~ I
am so happy he's still here and I get to hug & kiss & cuddle
him & listen to him laugh & see him smile. I know the odds
are very low that he'll be here to see his 8th birthday, so I
am going to enjoy every moment of this day.
I thank God for the gift of my little boy. He is a treasure
and I am SO fortunate to be his mom.
I'll update tonight or tomorrow with details & pictures of
his special, fun day.
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Written February 28, 2013 1:40am by Kate Parker
I took Joshua to get his hair cut today. His head is too
sensitive to allow me to do it anymore and he specifically
asked for our friend to do it. I had to wake him to leave
because David had an appointment with the plastic surgeon
(2nd follow-up from his skin graft) & I wanted to
accomplish two things with one trip out (Adam & Sarah got
haircuts, too). Joshie asked for his hair to be "pikey wike
Adam's," so that's what he got ~ buzzed on the sides and
longer on top so it can be spiked up with gel. He was quite
pleased with the end result and omigosh, he's adorable. He
also looks even more like his biggest brother, which makes
me smile. I love that I will always be able to look at
pictures of Adam and have an idea of what Joshua would
have looked like as an older kid/adult since they are so
similar in appearance.
The outing wore him out, of course, and he was asleep
before we got home. After a 5 hour nap, he woke and
played some games on his iPad. He's working hard to
breathe tonight. About every 4th breath comes with a loud
inhalation as he forcefully brings air into his lungs. He isn't
bothered by the extra work it's taking to breathe. I can't say
the same.
Preparing for his birthday has left me feeling emotionally
fragile. Yes, it's fantastic that he will celebrate #7. I am
beyond happy that he's still here to sing "Happy Birthday"
to. So what's the problem? I don't know how to put it into
words other than to say it's incredibly difficult &
bittersweet to buy gifts and the makings for a cake &
decorations for a child's 7th birthday when you know the
odds are extremely high it'll be the last time you get to do
those simple things. I know that I was expressing similar
sentiments last year ~ that we were doubtful we'd get to
celebrate another birthday with Joshua alive ~ and here we
are again, both *getting* the privilege of celebrating with
him here and *having* to walk through the emotions once
more. It's not a matter of choosing to not focus on the
"what ifs", either. I can't say, "Well, he's here now and
who knows, maybe he'll be here next year, too!" It's not
that simple. Unfortunately, I really don't know how to
explain how I am feeling other than "a mess". I'm joyful,
thankful, happy as can be that I get to put up Perry the
Platypus decorations on Saturday. I can't wait to watch
Joshua open his gifts because he is going to absolutely
LOVE what we bought him ~ legos, bionicles, a Perry the
Platypus pillow pet, a dragon mini pillow pet and an
alligator cuddleuppet. I will smile as we sing "Happy
Birthday" to him and watch him blow out his re-lighting
candles over & over. But all of the happy will be tinged
with sadness for me because I can't escape the thoughts that
this will probably be the last time I get to do this with
him. I won't let the sad overwhelm the happy, but I can't
pretend that I won't feel it when it's already happening.
I dislike feeling this way. I try to not get swamped by sad
feelings, but between Joshua and Bethany and daily life, it's
getting increasingly difficult to not feel overwhelmed at
times. The closer Joshua gets to leaving us, the more
panicked I feel. I realize logic would make a person think I
would be a lot calmer since I've had time to get prepared,
but you know what? It doesn't get easier. I think that
having such a long period of anticipatory grief makes it
easy for a person to get lulled into convincing themselves
that maybe their child will be able to live years longer than
the doctors thought. Heck, Joshua's doctors didn't think
he'd live to see 6 years old and now, here he is, about to
turn 7! So why couldn't he live to see 8 or 9 or 10,
right? Believe me, I think that, too. But then I am forced
to face the fact that he continues to slide downhill and we're
seeing more and more signs that he's struggling. And then
there are the conversations that he initiates, telling us how
he can't wait to go to heaven and how he wants to die after
he's the ring guy at his brother's wedding. Those things
make it tough to believe he'll see another year of life and,
as such, I am acutely aware of events that meet the "most
likely the last time we'll get to do this" criteria. It is
tough. Most days, I don't dwell on what's coming down the
pike. Approaching milestones such as birthdays or
holidays, however, slam me right against a wall and say,
"LOOK AT THIS AND ACKNOWLEDGE WHAT IT
MEANS!" Admitting to myself that yeah, this is probably
the last time I get to buy streamers and balloons and
presents for Joshua's birthday had me teary-eyed as I
shopped for this very exciting, very happy occasion. And
it's the combination of feeling genuine happiness mixed
with strong sadness that has me feeling wrecked. Despite
that, I freely admit I'd rather feel this mixture of emotions
than face the alternative, which I know I'll be experiencing
sooner than I could ever be ready for.
Two nights ago as we were going to sleep, Joshua's voice
broke the silence in the darkness as he announced with a
giggle, "I can't WAIT to meet your daddy!" I immediately
asked, "What? MY daddy?" Joshua affirmed,
"Yeah. Your daddy. I can't wait to meet him because he
makes REALLY good hamburgers and steak and I get to
have some!" Ooooooookkkkaaaayyyyyy... that made me
pause. My dad was an amazing BBQ'er. Every time the
family got together, my father would BBQ and burgers &
steaks were his specialty. Joshua doesn't know that,
though. My dad died in 1993, thirteen years before Joshua
was born. The fact that he was a fantastic cook who
specialized in BBQ'ing is not something that's ever come
up in conversation. So HOW did my son know this
tidbit? I asked him that question & he giggled before
answering, "I just know!" I pushed, asking him, "Did your
angels tell you that," and Joshua said, "Nope!" When I
asked, "So who told you," he very seriously replied, "I can't
tell you. It's a secret." So who knows? It made me smile to
think of my dad cooking a hamburger for Joshua, though,
and I was comforted to get another reminder that where my
child is going after he dies is a real, tangible, physical
place.
64 people this
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Written February 25, 2013 12:14am by Kate Parker
This will be kind of a mixed update tonight.
After doing some research today and talking with a friend
who I knew had sold bracelets as a fundraiser for her son, I
learned that it is ridiculously expensive to mail silicone
bracelets because even though they are very lightweight,
they are too bulky to go through the post office machines,
so they have to be hand-canceled and therefore cost more to
ship. In order to make bracelets worth doing, I'd have to
sell them for around $7 apiece, which is too expensive to
do. My friend, Kate Estes, told me about the magnets they
opted to sell for Noah instead of bracelets, and after talking
it over with Charley, this is the direction we are opting to
take.
I created a magnet that incorporates pictures of both Joshua
and Bethany. It says "Remember Joshua and Bethany
Parker" and has their caringbridge addresses
underneath. You can view it
here: http://s1309.beta.photobucket.com/user/kpmomof8/
media/magnet2_zpscf1ab8b8.jpg.html My family & I
want you to remember Joshua's smile, his laugh, his joy of
living, his strength, his courage. We want you to remember
what has made you want to follow his story and when he
has died, we simply want you to remember him. That he
lived, that he was an incredible little boy. We want you to
remember Bethany's smile and her story. How she
survived 3 years in a Ukrainian orphanage and joined our
family through the gift of adoption. We want you to
remember her spirit and the strength of her will to live
despite the odds stacked against her. After she dies, we
want you to remember that she lived. That she was a
special little girl.
If you want to order a magnet, please send an email to
parkerkidsmagnet@gmail.com and tell me how many
magnets you would like and your mailing address. I will
respond by email with the paypal address to send payment
(this will confirm that I received your order). The cost for
magnets is $5 each for 1-2 or $4 each for 3 or more (ie: $12
for 3, $16 for 4, $20 for 5, etc).
I have ordered magnets and they will arrive in one week, so
orders placed now will have a short delay before the
magnets are shipped to you. However, if there is a strong
response to this fundraiser, I will order more magnets so
that there won't be a wait for orders to be mailed out.
The profit from selling magnets will be used for Joshua and
Bethany's ongoing medical expenses ~ specifically, their
prescription co-pays, which amount to several hundred
dollars per month.
I thank you in advance for considering helping my family
by purchasing a magnet. :)
Switching gears, let me update you on Joshiebear. He is
tired. It is apparent to even the younger kids in my family
that their brother is wearing out. Joshua mentions multiple
times per day that he's really tired. A few nights ago,
Megan suggested that maybe he should go to bed early and
sleep until he's not tired anymore. Joshua's response
pierced both his sister & my hearts: "If I sleep until I am
not tired anymore, I won't ever wake up." I quietly told
him, "Joshie, if you need to go to heaven now, it's
okay. You can go." He was quiet for a minute before
answering, saying, "No, not yet. I want to do things still."
He continues to have a good quality of life ~ he's not
hurting, he's happy, he enjoys the things he is able to do ~
but he is living less. That's how my friend phrased what
she sees happening with her child and it describes perfectly
what we are seeing with Joshua. He does less & less as
time goes on. He is more tired & he needs to rest more
often even though his activities are all sedentary ones. We
hear him loudly draw in deep breaths throughout the day
and we regularly light matches for him to blow out to help
him get rid of excess carbon dioxide since regular breathing
isn't sufficient to do that anymore. His back is so stiff from
scar tissue that's built up that cuddling is difficult for him to
do. He can't sit comfortably in my lap anymore. When he
wants to snuggle, he lays between my outstretched legs,
resting his head on my thigh while covered with one of his
special blankets, and I bend over him to gently hug him and
I stroke his hair. It is painful to see increasing limits placed
on what he can manage and deterioration that takes away
his abilities. I know I have said that a lot this past year, but
it never ceases to be true.
Emily and I are going to make a paper chain to count down
the days until Adam & Faith's wedding. They are planning
a mid-April date and we want to give Joshua something
tangible to help him visualize how many days there are
before he gets to be 'da ween dye' since he has made it clear
that is what he is staying here for. Honestly, there are days
when I wonder if he will make it to the wedding, but there
are just as many days that I feel confident that he could be
here for many more months. At the end of every day, I
realize that only God knows what He has ordained for
Joshua. I don't let myself spend more than a few fleeting
moments here & there focusing on it, but there really is no
way that I know of to prevent thoughts of Joshua's death
from entering my mind. We (my family & our
pediatrician) know the end is coming and all appearances
make us believe it will happen in 2013. And we know
there is no chance of a last-minute surgery to grant us more
time (like what we got in November, 2011), so as Joshua
gets increasingly weary of fighting, the knot in my stomach
grows larger. I will never stop assuring him that it's okay
to go to heaven so he can be pain-free and happy forever,
but between you & me, the sadness in my heart is
increasing as my time with Joshua grows shorter and no
matter how many tears I shed, there seems to be an endless
supply ready to take their place.
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Written February 20, 2013 1:48pm by Kate Parker
Joshua is happy that we adopted. He thinks we should
adopt another baby (not in our plans, but I am not telling
him that! LOL). He enjoys watching coming-home videos
of children who have been adopted and he smiles and
giggles as he says how cute they are and how happy their
mommy is to have them home.
In honor of Joshua's upcoming 7th birthday, I want to ask
you to consider helping my friend, Leah, raise the last bit of
money she needs to complete the adoption of her 3rd son
from Serbia. She and her husband, Dean, travel in April to
bring little "B" home and they are hosting a really great
fundraiser on their blog right now. Would you go look and
then, if you can give a little something, please do (you can
win some great things if you donate)? You can call it a
birthday present for Joshua. I would love to be able to tell
him that people care so much about him that they wanted to
help Leah get HER little boy home. I think it would please
Joshua to think he played any part in helping an orphan get
adopted. The link is here:
http://myianna.blogspot.com/2013/02/spring-familyfundraiser.html If you donate, you can tell Leah it's in
honor of Joshua. I know she'd be as touched by that as
much as I would be.
Also, a couple of months ago, a kindhearted lady who has
been following Joshua's journey emailed me and asked if I
would mind if she had some silicone bracelets made and
sold them to help us raise some money toward Joshua's
ongoing medical expenses. I had never thought about
doing something like that, but I told Julie that I would not
have a problem with her spearheading that project on
behalf of Joshua. She left a comment in the guestbook a
couple of days ago and I want to make sure it gets seen for
anyone who might be interested (thank you, Julie!):
To all who follow Joshua's story as he continues to write it:
I approached Kate a few weeks ago with an idea I had. She
okay'd it, so with her blessing, I'ma run it past the rest of
you. Forgive me if it's a bit rough - I'm a very capable
orator, but my written word is never as smooth.
I want to fo something for Joshua and all the Parkers. To
make his story known, share his joy of life, make sure he is
remembered outside his family as well as within it...and
make life even just a little easier for all of the kids (and
their parents.)
To this end, I was considering ordering a set of those
rubber bracelets that have words engraved on them. Before
Kate takes time from her crazy-busy routine and maybe
talks with Joshua about what would be written on them, I
would like to get a rough estimate on how many - if anyone
- would be interested in buying such a thing. The more I
can order at once, the cheaper they will be, of course.
Counting the cost to mail them, and even to give a bit to the
Parkers, I'd say that they'll be "about" $5 each.
So...as the saying goes...raise your hand if you would be
interested in honoring the Parker family...honoring
Joshua...in this way. That is, put a "yes,please" or similar
on your next note. I'll count the number up, and if there's
enough interest, I'll talk with Kate again, and get the ball
rolling.
Julie Ritt
I can't really think of what should be written on the
bracelets. I am open to suggestions, though, so if you have
an idea, please leave a comment in the guestbook. My
family has thought of things like, "Joshua, our little hero"
(that's what some close friends call him), or "Thinking of
Joshua" or even just his name "Joshua Parker". We don't
want "Praying for Joshua," because not everyone prays and
we don't want anyone excluded who might otherwise want
to show support for our little guy. So... if you have any
thoughts, ideas, suggestions, please let me know!
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Written February 19, 2013 10:51pm by Kate Parker
Joshua is stable. Around our house, the consensus is that
he and Bethany are taking turns being needy and right now,
it's his sister's turn. Truth be told, I'm okay with that. Life
is much more manageable when I don't have both Joshua &
Bethany in crisis mode simultaneously.
In just 10 days (and a few hours), on March 2nd, my little
boy will reach a very special milestone. He's going to
celebrate his 7th birthday! I could cry with gratitude that
God has extended Joshie's life so much further than anyone
ever anticipated was possible. I vividly remember one year
ago, when Dr. S, our pediatrician, hugged me at the little
party she had for Joshua at her office and whispered
victoriously in my ear, "No one thought he could make it to
6!" She and I are both happily amazed that Joshua has
survived another year. If it weren't for the fact that he tells
us (almost daily) things like, "After I'm the ring guy in
Adam & Faith's wedding, I'm going to die," I would dare to
hope he could live to see his 8th birthday. With where's
he's at now, though, and the struggles he has with
breathing, I don't really believe it's going to
happen. Today, though, instead of being sad about that, I
am focusing on how fantastic it is that I get to go shopping
for birthday presents this week and how happy I am that I
get to decorate the main rooms of the house with orange,
blue & red (Joshua's favorite colors, in that order) and how
my family will get to gather around the bravest, sweetest,
newly-minted 7 year old we know and sing, "Happy
Birthday" as we listen to him laugh.
I truly thought we'd be marking Joshua's first birthday in
heaven this year. That we aren't... that we will be
celebrating March 2nd with him still here with us... is
astounding to me. I am overwhelmed with thankfulness to
God for answering our prayers for more time. I still wish
he'd answer our prayers for a complete healing that would
allow Joshie to stay here with us forever.

Written February 11, 2013 10:37pm by Kate Parker
Remember how I wrote last week that Joshua had had a
restless night and had spent about an hour staring at a
corner of the ceiling in his hospital room, but wouldn't tell
me what was going on? Today, when he woke up at 4pm,
he wasn't ready to go downstairs right away, so Megan & I
laid on our beds and Joshua cuddled up against me. Then,
without any prompting from us, he began talking about
what had happened that night.
He told us that when he was in the hospital, the angels
came to his room and they said his room was ready, but he
told them, "I don't think so!" (not in a snotty tone, but
rather, a matter-of-fact one). Megan & I exchanged a
shocked look because I had told her about what a weird
experience it had been to watch Joshua staring intently at
the corner of the room, up at the ceiling level, and that I
had *known* something was bothering him, but he
wouldn't tell me what it was, and how, at one point, he had
said, "I don't THINK so!" and when I had asked what he
was talking about, he glanced my way & answered,
"Nothing," then rolled on his side & announced in a
somewhat-grumpy voice, "I'm going to sleep now." So to
hear him say, today, that those words had been uttered in
response to God's angels announcing that his room in
heaven is ready for him shocked Megan and me into
speechlessness. It also made me think back to the brief
flashes of light I had seen four different times in the upper
corner of that room & how I had tried to figure out what
was causing it (it was not rhythmical or in any kind of
pattern), but never did find a source, and I wondered if
perhaps that had been a sign of the celestial beings who
were conversing with my son.
Joshua didn't notice his sister or my stunned silence and
went on, explaining that the angels know he wants to be the
ring guy for Adam & Faith's wedding and he isn't going to
heaven until after he's the ring guy, so he's glad his room is
done, but he isn't going yet. His voice conveyed
impatience, as though he couldn't believe these angels had
actually come to him and expected that he might want to go
to heaven NOW when they KNOW he's got something he
still has to do HERE! He told Megan & me, "I have told
them I have to be the ring guy first. They know
that." Megan replied, "Well, okay then! How silly of those
angels to think you'd be leaving sooner, I guess!" Joshua
nodded, happy that SOMEONE understood what was so
obvious to him.
I asked, "So you'll go to heaven after the wedding?"
"Yep! I'm so excited to go! Heaven is the best place ever,"
was his response.
"How do you know that?" I asked.
"I just do," he confidently replied. Megan added, "One
more thing the angels have told him," and Joshua agreed
with her.
Megan asked if the angels will come back to take him to
heaven and Joshua nodded, then informed his sister that the
angels will come and say, "C'mon, Joshie, it's time to go,"
and he will answer, "Okay, but be sure to bring my stuffed
animals!" That made Megan & me laugh and then we
joked with Joshua, asking which stuffies he would be
taking with him. He's pretty certain he has to take his two
Om Noms (character from Cut the Rope), Swampy (Beanie
Baby alligator), the dog that was given to him by his
beloved pediatrician (that stuffed animal holds his oxygen
every night) and Dino (WebKinz dinosaur). He'd like to
take them all, but understood that maybe the angels
couldn't carry so much. Megan suggested letting me keep
one of his Om Noms, but Joshua laughed off that idea,
saying that no, the Om Noms have to stay together, but it's
okay because I'll be coming to heaven right behind him, so
I won't miss them.
Joshua told us he can't wait to go to heaven so he can pull
out his g-tube forever ("and it won't hurt to pull it out!")
and then he can "go on a hungry rampage and eat all the
food in heaven!" We laughed at that and I joked, "But
what about Megan? By the time she gets to heaven, you'll
have eaten everything! Aren't you going to save any food
for her?" Joshie roared with laughter as he answered,
"No! She'll have to starve!" Megan laughed as she
sarcastically thanked her brother for caring so much. He
laughed as he replied, "You welcome!"
It was a good way to lighten the mood in the room and
laughing with Joshua really is one of our favorite things to
do.
At the conclusion of our conversation, Joshua leaned
against me, wrapping his little arms around my waist as he
proclaimed, "I love you forever and ever, Mommy. I love
you SOOOOOOOO much!" I assured him I felt exactly the
same way about him. Megan came over from her bed so
she could hug her baby brother and we all sat together on
Joshua & my bed, lost in our individual thoughts. After a
short time, I suggested that since we know he's not going to
heaven until after the wedding, we should try to have lots
of fun every day. Joshua agreed with that idea and
promptly decided he was going to play "the castle game"
with Isaac. Megan & I got him dressed & ready for his day
(which was beginning at almost 5pm) and off he went,
happy as could be.
Do I think Joshua actually talked with angels in that
hospital room? Yes.
Do I think God is giving Joshua control of when he wants
to die? No, because the Bible says our days are known
before one of them comes to be (Psalm 139:16); however,
it does seem that, for whatever reason, God is allowing
Joshua to feel as though he is in control, and that is a huge
gift to our family because we KNOW that Joshua is not
afraid or worried about dying and that brings tremendous
relief and comfort to us all.
Do I believe Joshua will make it to be "da wing die" at
Adam & Faith's wedding (where he'll also be Adam's best
man)? Yes, I do. It would shock me beyond anything I
could explain if he died beforehand.
Do I think Joshua will die the night of Adam & Faith's
wedding, after having fulfilled his goal of serving in the
wedding? Honestly, I don't know. I sure hope not! I have
already prayed that if God is going to let Joshua attend the
wedding, would He please grant us some time afterward
before taking Joshua Home so that Adam & Faith don't go
from the highest high (getting married) to the lowest low
(losing Joshua) in a very small span of time? Adam & I
prayed about that together, in fact. We know that God's
timing is perfect and we will trust Him no matter what, but
yeah, we're hoping that Joshua doesn't go to the wedding
and then decide he's met all of his earthly goals and is
ready to leave that night. That would be pretty awful.
As always, I am thanking God for this conversation that
Joshua shared with me (and Megan) today. As hard as
some of the things he says are to hear, I am happy that we
will always be able to remember the things Joshua told us
about heaven before he ever left to go. And you know, I
think I will always look back & laugh at the memory of
Joshua telling God's angels, "I don't THINK so!" That's my
boy, doing things his own way, in his own time. I couldn't
love him more if I tried.
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Written February 10, 2013 8:20pm by Kate Parker
Joshua is still doing all right, but he's not completely well
yet. He has an occasional cough, though he tries to not
cough since it makes his head hurt. He's *very* tired all
the time that he's awake, which I am attributing to the flu. I
am hopeful that once he's fully recovered from the virus,
his energy will return.
He's been having some scary moments where both his
breathing & heart rate drop precipitously. I'm relieved that
he recovers each time, but it's still sad to see it happening at
all. No matter how slowly he moves toward heaven, the
fact is that he's still heading inexorably in that direction &
reminders that he's not stable are unnerving.
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Written February 8, 2013 12:15pm by Kate Parker
Joshua is awake & acting like he is feeling A LOT better
today. His nose is not stuffy, he's not coughing and he ate
half of a scrambled egg. He says he feels "not sick
anymore." His head isn't hurting at all right now.
If it weren't for the fact that he tested positive for influenza,
I would be sitting here saying that he must not have
actually had the flu because today is only day 3 and flu
lasts longer than that, and for the past 2 days, he was SO ill
that his pediatrician was warning me that he could very
realistically die from this, so how can he be almost
completely fine now?
Miracle healing? I don't know. All I can do is report what is
happening and what I'm seeing, and I'm sitting here
listening to Joshua ask his sister to make him an omelet &
giggling as he watches his brother play a game on the Wii.
His coloring is back to his normal, he's not sniffling or
coughing or gagging, and he's talking & laughing just like
normal. I know God answers all prayers and this time, it
seems He said "yes" to the ones everyone has been sending
up for Joshua's healing. It's humbling and amazing and a
big, honkin' relief!
Almost all of the other kids are all on the upswing now,
too. Only Bethany is still miserable. She developed a rash
in an interesting patten that makes me suspect shingles. I'll
update later on her CB page after I find out what's up with
my girly.
Thank you SO MUCH for praying for Joshie!!! ♥
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
Written February 7, 2013 7:16pm by Kate Parker
We're getting ready to go home. Joshua has slept all but
about 30 minutes today & had an episode where he stopped
breathing, but by the time the nurse ran in, he had started
back up again, so it was okay (minus our mutual adrenaline
rush from the screaming alarm). That had happened a few
times yesterday, too, and now I am wondering if he has
little episodes like this on a regular basis, but we just didn't
know it since we don't have him hooked up to all of the
monitors they use here when he's at home. It's pretty much
just evidence of what is happening with his brain stem, so
it's not unexpected, exactly... more that it was surprising to
realize that it's happening, as it makes us think that perhaps
Joshua isn't as stable as we've been thinking he was.
Anyway, thank you so much for all of the prayer support
and good thoughts and well wishes. I will continue to
update on how Joshie is doing as he fights this flu bug from
home. I am thankful that I get to take him home where he
can be comfortable and surrounded by everyone who loves
him best. It will be good for him and I will be relieved to
be able to take care of my other kids, too, rather than
having to ask my sick big kids to do it.
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Written February 7, 2013 2:18pm by Kate Parker
The ped came in this
morning, looked at Joshua & agreed that he needs to get out
of here. What she said was, "He needs to get home, where
you can all be together and he can draw strength from his
family." She agreed with me that he needs to want to fight
in order to get through this.
We turned off his fentanyl drip at 11:30am and started a
feed of Pedialyte. If he tolerates 2 ounces per hour for 6
hours and all of his medications that are given via g-tube,
then Dr. H will discharge Joshie early this evening.
She's also going to start Bethany on Tamiflu to try to help
her stay out of the hospital. Joshua started it yesterday and
will continue getting it. I know there are some arguments
against it, but for my medically-fragile kids, we are erring
on the side of caution. They need all the help they can get
in fighting this virus.
Joshie is getting more gunky, but his oxygen is staying
above 90% (minus the occasional desat) and his heart rate
is not excessively elevated today like it was yesterday, so
those are good things. Dr. S, who had to go out of town,
called to chat with me about how my little guy is doing.
She said she was really happy to hear that Dr. H is going to
get Joshua home to be with his family and that we'll touch
base each day to assess how things are going. She was
encouraged that he was stable overnight, but warned that
we still need to take this one day at a time and not get
overconfident because as the illness progresses through its
typical pattern, things could change quickly. As such, she
wants the adults in the family to remain vigilant in
watching how Joshua is doing. I assured her that I
understood and that we will not let down our guard
completely until Joshua is healthy again.
I am feeling SO thankful for Dr. H & Dr. S right now. I
told Joshua that we're going to go home today and he
nodded, then grabbed my neck and pulled me toward him
for a hug. Then he settled down & went to sleep & has been
sleeping soundly ever since. That confirmed for me that
taking Joshie home & managing this illness outside of the
hospital is the right decision for him, no matter how things
turn out.
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Written February 7, 2013 10:33am by Kate Parker
Joshua had a restless night without much sleep. He spent
almost an hour staring at the ceiling, but refused to tell me
what he was looking at (I suspect his angels were visiting,
as crazy as that may sound). His breathing is liquidysounding. You know how you'll hear someone breathe and
you wish you could cough for them to clear the gunk you
can hear as they inhale & exhale? That's what he sounds
like. He doesn't seem to have any drive to cough,
though. If the nurses or I ask him to, he will comply with a
weak cough, but he isn't spontaneously hacking anything
up. That is a bit concerning, but I'm hoping that as things
progress, he'll get that urge to cough when he needs to. He
is very sad ~ gets teary from time to time ~ because he
wants to go home. He does not want to be here and I want
to get him out as soon as possible because he just does not
"fight" while here and we need him to want to get better if
that's going to happen. The doctor will be in to see Joshua
in a few minutes and I am going to ask if we can start
Pedialyte and if he tolerates it for 6 hours, will she let us go
home. I don't think I can stress just how dejected he is...
his will to live is gone when he's inpatient and that freaks
me out. I want to get him home and give him every chance
to fight this virus and recover. He has a birthday in 3
weeks and a wedding where he'll be the best man & ring
bearer in about 2 months... I KNOW he wants to celebrate
those special days, so I am going to try to make it happen (I
know, God is in control, but since He isn't showing me the
future, I'm just going to believe it can happen and keep
pushing for it).

Written February 6, 2013 11:36pm by Kate Parker
Joshua has had two episodes of his respiration rate going to
zero. It appears to be a brain stem problem, not medicationrelated. Dr. S came to have a serious talk with me, saying
she doesn't know which way this is going to go, but this
virus could be a terminal event for Joshua. Because Joshua
has made it very clear prior to this hospitalization that he
wants to be at home when he dies, Dr. S's goal is to get
Joshua home as soon as he is able to tolerate fluids in the
volume he needs to maintain baseline hydration, but she
made sure I understand that even if he is able to go home,
that will not mean he's out of the woods and she will touch
base with me every day as we support Joshua through this
illness. No one knows for sure why his brain stem seems to
be reacting so negatively to him being sick, but the working
hypothesis tonight is that the added effort his body is going
through to fight this bug is probably taxing all of his
systems.
I am pretty much in denial at this point, refusing to believe
that after everything Joshua has gone through, he could lose
his last fight to the stupid flu or complications from it.
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Written February 6, 2013 5:49pm by Kate Parker
Joshua's been admitted to the hospital due to influenza &
dehydration. Before anyone screams about how he should
have gotten a flu shot, let me shut you down by saying that
Bethany ALSO has influenza and she DID get the flu
shot. Our doctors are saying this is a strain not covered by
the vaccine, so it's a moot point and I don't want to hear a
lecture from anyone, please. Thanks.
He's currently sleeping & is getting rehydrated via IV. My
stress level is currently a 9 out of 10 since not only is
Joshua extremely ill, Emily, Sarah, Isaac & Bethany are
also down with this virus, and Adam was diagnosed today
with pneumonia (secondary infection from the
flu). David's hand isn't hurting him as much 2 days post-op
and so far, he's not sick, but I'm not feeling confident he'll
remain standing. Charley & I are okay at this time and
praying that we stay that way. Megan is better, but still not
at 100%.
Please pray for Joshua to get through this without incident.
Please pray for Bethany to not need hospitalization. Please
pray for my other children to get through this without
secondary infections developing. Please pray for Charley
and me to not get sick. And please pray for peace in the
midst of this storm.
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Written February 5, 2013 9:26pm by Kate Parker
Joshua is holding his own. He sleeps a lot, but is generally
pretty content when he's awake. The "blowing trick" isn't
really working that well, but it keeps him calm because it
gives him something to do and that seems to be what he
needs. He knows it isn't helping, but he'll still ask me to
blow with him at varying times throughout the day and I
am glad he has the "trick' to make him feel more in control.
Life here has been a bit crazy as of late. We've had illness
affecting multiple kids that started by simultaneously
taking out the oldest two (that hasn't happened since Megan
& Adam were toddlers), one of my twins had surgery
yesterday to place a skin graft after an accident involving
broken glass, there have been lots of various appointments
for kids & pets, a repair guy came to fix the fridge (still
under warranty ~ yea), and the never-ending laundry,
dishes & other chores that are perpetually on my "to do"
list have limited my time online. It's not like I have a lot to
report, though. Joshua is hanging on, we've managed to
keep him healthy thus far amidst his sick siblings, and he's
about the same as he's been. Still desatting throughout the
day & night, still needing some breakthrough pain
medication each day, still spending most of his awake
hours playing games with a sibling on his iPad, still making
random comments about dying & heaven that take my
breath away, still giving us all dozens of reasons to smile
every day. As time goes on, his world gets smaller &
smaller, but it's okay because we're still in that world with
him and we're happy to be here. It is not at all ideal, but it
definitely beats the alternative.
56 people this

Written February 1, 2013 12:02am by Kate Parker
Last night, Joshua asked me to record a message to give his
pediatrician and her nurse when I take Bethany in for her
appointment tomorrow. I did that and then Joshua began
desatting, which is not at all unusual, but I decided to catch
a snippet of it on video. I don't know why; I just turned the
camera toward his pulse ox & hit the "record" button. The
commentary that I caught on tape was something I want to
share, as it's a good example of the kind of things that come
out of Joshua's mouth on a frequent basis these days. It's
one thing to write about this kind of thing; it's another to let
you hear it for yourself.
http://www.youtube.com/watch?v=3i9AYh8qZk0&feature
=youtu.be
He tells us regularly now that he's going to stop breathing
and then he'll die, or that he's going to die and Bethany is
going to die and then they will be able to play together in
heaven. While I am sincerely thankful that he is okay with
knowing he's going to die (versus being terrified), it is still
a shock to hear him chat so casually about it. I think what
really helped him to not be bothered about the idea of going
to heaven was hearing that Bethie would be there,
too. Joshua is happy his baby sister will be with him. As
awful as it's going to be for me to be without both of them,
I do find comfort in knowing they will be together and will
have each other so they won't be alone while they wait for
the rest of the family to join them.
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Written January 27, 2013 8:57pm by Kate Parker
Joshua slept 20 hours, then woke up happy and asking for a
donut "as big as my head". How could we resist? Adam
took his little brother to the store & brought home a dozen
donuts (not the size of anyone's head, but still
yummy). Joshua has had a good day today. The "blowing
trick" (that's what he's named it) seems to help when he's
feeling like he has to yawn excessively, which I'm thankful
for. I don't know if it's actually doing anything or if the
improvement is purely psychological, but it doesn't matter
to me. Joshua is happier and that's what counts around here
these days! :)
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Written January 27, 2013 1:48am by Kate Parker
The past two nights, in addition to having bouts of apnea
that resulted in Joshua's oxygen levels dropping
significantly, he has struggled with feeling as though he
couldn't breathe and/or that he needed to yawn repeatedly
(but couldn't, as he lost the ability to yawn many months
ago). It has caused intense distress and the first night it
happened, he had a crying meltdown because he was so
scared. The first night, we (Megan, Adam & I) thought the
emotional outburst was due to fatigue more than anything
else. Last night, though, Joshua stayed up past 2am
repeatedly sitting himself up because he wanted to yawn
but couldn't. He'd be laying down, then suddenly sit up and
fight to yawn. Over & over, this pattern repeated
itself. Finally, I piled pillows behind him so he could be
inclined at a 45 degree angle and I adjusted his oxygen to
blow more directly into his face. That seemed to help a bit,
enough that he was able to fall asleep. Before nodding off,
though, he told me he needed to see Dr. S and he wanted
me to make an appointment for him to see her tomorrow. I
was surprised since he so rarely asks to see a doctor and I
asked him, "You want to go see Dr. S?" He confirmed that
he did, telling me, "She can help me feel better."
Uh oh. I did not know what to do with that since I am well
aware that there isn't a physician on earth who can fix
Joshua's brain stem. Still, I assured him that I would get an
appointment for him to see his beloved pediatrician. Then I
grabbed my laptop & sent Dr. S an email (yep, at 2am)
telling her what was going on and how Joshua wanted to
see her. I told her that I knew she couldn't fix this, but I
hoped maybe she could give him some peace of mind by
suggesting things like continuing to sleep partially inclined
and using more oxygen or anything else that she could
think of to toss out as a placebo. I also told her I didn't
know if she was working today (Saturday) or not, but if she
wasn't, would she please give whichever doctor was
working in the clinic the scoop so they could help out. I hit
"send," turned my laptop off & went to sleep.
This morning, Dr. S replied that no, she wasn't working
today, but she would be in town and could meet us at 4:30
if that would be convenient for my schedule. Yes, she
drove into town on a day she did not work to sit down with
my little boy and reassure him and do everything she could
to bring him some peace of mind. There aren't words
adequate enough to describe how much this act of kindness
meant to me today. I've always known that Dr. S cares
deeply about Joshua. Today was one more confirmation of
that.
Dr. S was wonderful with Joshua. She called ahead to her
office and told them to send Joshua to the empty side of the
clinic so there was no chance he'd get exposed to anything
and then she called again to let us know she was on her
way and to double-check that Joshua was in the "clean"
area. She was so sweet with Joshie... they talked and he
held his arms out for a hug (which melted her) and she
quietly explained to me that the reason he feels like he
needs to yawn all the time is because he experiences
hypercapnia ~ too much carbon dioxide in his bloodstream
because his brain stem is not triggering him to breathe more
rapidly and deeply in response to CO2 building up, and
Joshua isn't breathing off the CO2 like he should. That is
why he feels like he wants to yawn all the time ~ yawning
is a response to increased CO2 in the blood. Unfortunately,
he lacks the ability to yawn anymore, which is why we've
got a dilemma. She taught Joshua how to blow repeatedly
as an alternative to yawning (short inhalation followed by
strong exhalation, repeated quickly 6 times in a row ~ she
chose 6 repetitions since he's 6 years old, which Joshie
liked). The blowing helps to get some of the excess CO2
out, which then makes Joshua feel a little better. She agreed
that keeping him inclined when sleeping is fine if it makes
him feel better and she wants us to try using either a
cannula or a non-rebreather mask (she gave me one for
him) so that Joshua gets more oxygen with each breath
since his respiration rate is so slow, especially when he's
sleeping (typically just 8-10 breaths per minute).
We chatted for 45 minutes, during which time Dr. S was
just so dang lovely with Joshua that I had to hold back tears
a few times. He adores her and she was SO kind to come in
just to spend time with my little boy so she could reassure
him and help him to not be so panicked about this new
development with his breathing. Toward the end of the
appointment/visit, Joshua was fading & zoning out and Dr.
S commented on how this trip had really worn him out. I
told her, "Oh yeah. He'll sleep from the time we put him in
the car until tomorrow. He gets wiped out from any
outing." She understood, telling me it was probably too
much stimulation for his brain to manage now.
When I got home, I looked up what hypercapnia is since I
had no real understanding of why it was significant when
Dr. S mentioned it during our talk. Because Joshua was
right there, she just sort of glossed over the term, reminded
me of how there are multiple "triggers" that make a person
breathe & then kept going, but I sensed that the term was
important. Once I read about hypercapnia, I came to
understand what is going on.
"Hypercapnia normally triggers a reflex which increases
breathing and access to oxygen, such as arousal and turning
the head during sleep. A failure of this reflex can be
fatal." (quote from Wikipedia)
When you've got too much CO2 in your blood, the
respiratory center in your brain stem typically increases the
rate & depth with which you breathe in order to increase
oxygen intake & decrease carbon dioxide in the
bloodstream. Joshua's brain stem, however, is not working
perfectly, so he doesn't breathe any faster or deeper when
his CO2 level gets too high. He does, however, get very
sweaty, confused/zones out, says he can't see very well,
acts like he doesn't hear us very well & has shortness of
breath ~ all of which are symptoms of CO2 toxicity. Once
he begins satting better, everything chills out, an indication
that his brain stem is once again "behaving" and sending
out the correct signals to the muscles that make him inhale
& exhale. Then he's fine until the next episode occurs.
So... yeah... now I understand WHAT is happening. I also
think I understand WHY it is suddenly happening now. The
respiratory control center is located in the brain stem,
specifically, in a portion called the medulla oblongata,
which is attached to the spinal cord. Joshua's spinal cord is
severely stuck (tethered) in scar tissue, so it can't move
freely and when he grows, his spinal cord, which isn't
floating freely inside his spinal column like it should, gets
stretched. This stretching creates downward tension on his
brain stem. Joshua recently had a growth spurt, so the onset
of the breathing problem we are seeing makes perfect sense
to me. The respiratory center of his brain is getting
stretched and what we are seeing as a result is the loss of
the reflex that should compensate for a higher-than-normal
level of carbon dioxide.
Yes, it makes me feel sick to realize what is going on and
to know there is nothing I can do to stop this from
happening or fix it. I do wonder if it is possible that his
brain stem could "get used to" the new degree of being
stretched and he could stabilize again for awhile. I have no
idea if that is realistic or not, but it's something to hope for
tonight when I am feeling sad.
I really hate getting hit when I never saw the blow coming.
It hurts so much more when it is unexpected. It is so
difficult to learn there is progression/further deterioration in
Joshua's condition. I realize that, logically, we know it's
going to happen, so it shouldn't be a big shock when things
go further downhill. But emotionally, it is REALLY hard to
come to grips with. One step further down the road is one
step closer to him leaving us to go to heaven. I'm not ready
for that. I'll NEVER be ready for that because even though
it will be wonderful for him & I am happy that he's
completely relaxed about the idea of going, it will be
horrible for me & the rest of my family to not have Joshie
here with us anymore. As such, I don't like the reminders
that it's getting closer.
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Joshua Parker's Journal

Written January 25, 2013 4:17pm by Kate Parker
Joshiebear is still doing okay. He's been having some runs
of desatting during the night (lots down in the mid-70%
range last night), but when he's awake, he's feeling good,
not hurting, and bringing joy to our lives simply by being
here.
He told Megan, Adam and me in a matter-of-fact voice,
"Beppy is going to die." I nodded in agreement, saying
calmly & matching my tone to his, "Yes, she is." He asked
if she was going to go to heaven before him and I told him
that yes, I thought there was a good chance she would do
that. He didn't like that because, as he said, "I want to meet
God and Jesus first!" I told him that God gets to choose
who comes to meet Him first, so it's not up to me. After a
few minutes of contemplating this news, Joshie decided it
would be okay if Bethany goes to heaven first, but he's
certain he should get to go second and the rest of us have to
wait until after that. Then he started listing all the great
things he and Beppy will get to do in heaven
together: swing at the park, ride bikes, run around, climb
trees, dig for buried treasure, play hide & seek and other
games. Honestly, Joshua is completely jazzed that Bethany
is coming to heaven with him. I guess that means we've
done a good job of making sure he isn't scared about going
to heaven because to listen to him talk, you'd think he was
heading to Disneyworld and now that he knows his baby
sister is coming, too, and may even get to go ahead of him,
he is SO excited. I know heaven will be incredible and
super-awesome-fun for him & Bethie... I DO know that...
and I AM relieved that he's not apprehensive or scared to
go. It's just sometimes painful for me (and Megan and
Adam) because we know how badly we are going to miss
him when he's not here anymore.
Joshua has also told us that even though the angels said his
room is almost ready, he is not going to heaven until after
he's been "da ween die" (the ring guy) for Adam & Faith's
wedding. That will take place at the beginning of April, so
Joshie asks us how many days until the wedding because he
is going to heaven after he's "da ween die". I am fervently
praying that if God is going to allow Joshua to be part of
the wedding (which would be a huge answer to our family's
prayers), He will also allow Joshua to live for some time
afterward. It would be pretty awful to have Joshua die the
day Adam & Faith got married. I want to say I know God
would not allow that to happen, but I know things like that
DO happen in life, so I'm specifically asking God for a
different outcome. Between you and me, I don't know if
Joshua can actually "will" himself to live for a specific
event (though I've heard stories of people who did just
that), but I think that if it's possible, he's determined enough
to make it happen, which will make Adam & Faith ultrahappy.
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Written January 20, 2013 9:54pm by Kate Parker
God is good, all the time, and He is gracious to me during
dark times. Evidence of this comes in the form of Joshua's
head pain being minimal. He has hours with zero pain, but
when his head does begin to hurt, it is mild and he is only
slightly bothered by it. A small dose of oxycodone ~ well,
small for Joshua, LOL. His "small" dose would kill me,
quite literally ~ eases the pain and he is able to continue
whatever activity he wants to do.
Thank you, Lord, for this mercy!
I can't really update on what Joshua's been doing the past
couple of days because I have been at the hospital with
Bethany, but from what I heard, he woke up earlier than
usual yesterday, saying he was awake because he "had a
mission." Adam bought Joshie an updated version of a
game and Joshua's mission was to beat the game. When I
heard about this, I could easily imagine his sweet little face
concentrating hard as he tried to win the game. He's so
cute... seriously adorable. I missed being with him and not
being part of the sweet things he did the past two days. I'm
so thankful he did well in my absence, though, as that
allowed me to focus fully on Bethie, which I needed to be
able to do. God knows my needs and meets them and
although I wish circumstances were different, I can still
recognize the gift for what it is. As hard as it is having two
kids at the end-stage of their medical conditions, it actually
*could* be worse if Joshua were unstable right now. I am
thankful that he's not and am trusting that God is going to
keep him that way until Bethany is safely with Him.
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Written January 19, 2013 1:22am by Kate Parker
Joshua had his first bout of
head pain that necessitated a breakthrough dose of
oxycodone today. It wasn't severe pain, though, so... sigh...
I don't know. Just trying to not feel too sad or distressed or
read too much into it. After the day we've had with
Bethany, it isn't going to take much to push me over the
edge.
He was very happy that Megan got her puppy today,
though, and has kissed Loki and told him, "I wuv you,
Woki," multiple times, which is pretty dang adorable. The
puppy seems to sense that he needs to be gentle with
Joshua, as he sits quietly in Joshie's lap without squirming
at all, content to be hugged and loved on.
I know... short update. I apologize for that. Go read
Bethany's journal entry
(caringbridge.org/visit/bethanyparker) to understand why I
don't have words to write more than this on Joshua's page
tonight. I almost didn't write anything, but wanted to
document the head pain since it's been two weeks without
it. I guess it was unrealistic to hope it could last forever, but
silly me, I still hoped.

Written January 16, 2013 10:06pm by Kate Parker
Joshie is still here, still as stable as he gets and has decided
he needs to bring multiple stuffed animals with him when
he comes downstairs from his room to the family room
each day. He then distributes the stuffed animals to people
and sections of the room, where they keep watch on
everyone. I am currently holding an Om Nom (from "Cut
the Rope") and Joshua periodically checks to make sure
Om Nom is still resting comfortably on my lap. It's pretty
darn cute and we all enjoy playing the game.
Megan (my oldest) is getting a German Shepherd puppy
this weekend and Joshua is VERY much looking forward
to holding and petting the puppy. He loves baby animals
and keeps saying, "Oh, how CUTE!" when he is shown a
picture of the puppy. I think it will be sweet to watch him
with the dog. It's something happy to look forward to,
which makes me smile.
Joshua has been sleeping later these past few days, which
has made Charley pretty sad because he has had to leave
for work before Joshua wakes up (he leaves at 4pm) and
Joshua is asleep before Daddy gets home (at 4-5am). As a
result, they aren't getting to spend any time together or even
see each other for days at a time. I am going to take Joshua
to Charley's work later tonight (it's only 2 miles from our
house) for a short visit. Joshua is feeling pretty good and
has said he wants to take Daddy some of the licorice that
Adam bought, so that will be our big outing for the
week. Yes, going out tonight will wipe him out for the rest
of the week, but it will be worth it so Charley can see his
little boy for a quick visit.
Anyway, that's about it for today. I have two little boys
waiting patiently for me to buzz their hair so they can
shower and then go to bed, so I'll end here. Thank you for
your prayers for Joshua. My family is truly grateful for the
support of so many and we are happy that God is answering
prayer and allowing us this time with Joshua being pain-
free and *happy*. It's a huge gift that we will always be
thankful to have had.
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Written January 13, 2013 12:28am by Kate Parker
I know readers want an update on Joshua, but I don't know
what to write. He's the same: tired, quiet, still smiling &
enjoying little things like playing games on his iPad. He
still says his head doesn't hurt at all except occasionally,
when he falls down and the jolt of hitting his knees on the
ground seems to radiate up to his head and causes a lot of
pain; at those times, he needs some extra oxycodone. The
things he was miraculously able to do on January 5th are
things he is not doing anymore. I guess that was just a
really special day that the Lord blessed us with. I'm so glad
my friend was here for 4 days prior to that day so she can
vouch that I'm not crazy for saying he could suddenly do
things he hadn't been able to do for months. :) Anyhow,
he's back to what was "normal" for him prior to that
awesome day with the exception of continued pain-free
status. That remains pretty amazing and none of his
doctors has any explanation for how it's possible that
Joshua isn't hurting. I do, but it doesn't jive with medical
science (God rarely does! LOL).
Our days with Joshua are pretty much "Groundhog Day"
around here. He gets up around the same time every day
(3-5pm), engages in the same activities each day, gets the
same meds at the same time each day and goes to bed at
about the same time every night (midnight). There are
occasional differences in the routine, but for the most part,
that's how he spends his days. Each night, we ask him if he
is going to heaven tonight and thus far, he has told us,
"No." I'm not really sure what I'll think if the night comes
where he answers, "Yes," but I'm not wasting time
worrying about it. Some nights, he has a LOT of apnea
episodes and the alarms go off frequently. Other nights, he
has no episodes. There's no rhyme or reason that I can
figure out. As such, I'm no longer trying to make sense of
it or see if I can "get a feel" for what it might mean. Yes, I
am learning to just let go and not try to analyze everything
to the nth degree ~ at least with Joshua. I figure, what is
the use? Nothing he does makes any sense at all anymore!
I'm sorry this isn't a great update, but like I said, I don't
really know what to write. I just didn't want to leave those
of you who are reading about Joshua wondering if there
was something important going on that I hadn't
shared. Nope; there's not. If something urgent happens, I
will post or I will have my oldest daughter post something
for me. For now, though, things are as stable as they get
around here, which makes for a nice reprieve for however
long it lasts.
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Written January 8, 2013 11:12pm by Kate Parker
I really don't know what is going on. We were in a fairly
stable place until after Christmas, when Joshua started
going downhill. Then he started talking about
conversations with angels and how he was going to be
going to heaven soon because his room would be
ready. Then he had a decent day, followed by an amazing,
GREAT day ~ the picture on the Welcome page was taken
the evening of that marvelous day and you can SEE how
good he was feeling ~ followed by a return to the quiet,
not-very-active, not-wanting-to-eat-or-drink-much little
boy that we had seen post-Christmas. The only difference
between the Joshua we saw after Christmas (and before his
GREAT day) & the Joshua we have now is that his head
pain is still gone. He occasionally will say his head hurts,
but by the time we draw up a breakthrough dose of
oxycodone, he says, "Nope, it isn't hurting anymore," so we
don't end up giving him the extra medication (he is still
getting all the regular doses of his meds). I can't explain
it. As far as I know, there is no medical explanation for
why a child whose pain has been chronic & severe for
several years suddenly is pain-free despite no change in his
medication schedule. I attribute it to God & His mercy and
am thankful for this reprieve for Joshua and the rest of my
family. It really has been wonderful to have him not in
awful pain all day long every day.
Megan and I were talking about what is going on with
Joshua ~ I told her I needed to update caringbridge but I
had no idea what to write other than, "I am so
confused!" She gave me an analogy that I agreed fit what
we are currently living out with Joshua, which is this: We
are standing at the top of a mountain, thinking, "Hey, this
was worth the climb! It's beautiful, it's peaceful, it's
actually not too bad a place to be." We aren't looking at the
steep sides of the mountain or thinking about the dangers
that surround us. But then a kiddo goes over the edge and
falls down the mountain, and suddenly, it's not such a great
place to be. Megan told me, "Mom, I think we are getting
the best of Joshua before he leaves." We're on that
mountaintop, catching our breath from the long climb and
feeling that we're getting a small break from
everything. But we can't help but feel that at any moment,
Joshua could start falling down the side of the mountain
and that will be it.
I don't know how much longer he will live and I really am
*not* trying to dramatize anything as I share his story. All
I can do is report what we are hearing & seeing &
experiencing with Joshie. I know it's confusing. Believe
me, my family and I are VERY confused and not knowing
what is going on with our little boy is actually stressful.
Despite his head pain being gone, he does not appear to be
getting better. Not in the slightest. He continues to be more
tired, less interested in participating in activity, less able to
process information and more quiet over the past couple of
days. But the sense that he is very close to dying, which we
all definitely felt was the case last week, is not really
present, either. As such, my family members & I are trying
to go back to just living one day at a time, enjoying the
hours that Joshua is awake & interactive, and waiting to see
what God is working out. The child who is writing his own
book seems to have decided to add another chapter rather
than the words, "The End." Admittedly, I am totally okay
with that.

Written January 7, 2013 12:13am by Kate Parker
I spent some time cuddling
Joshua as he slept today... curled up behind him, kissing
him, holding him. He woke up a bit after 3pm. He quietly
played a fishing game with Sarah (sister, not Auntie) and
then played legos with Isaac and then played on the iPad
with Emily. He ate some ice cream. Today has not been
like yesterday. Yesterday, Joshua was busy, active,
talkative & laughing a lot. Today, he is much more quiet
and reserved, but still happy. I am trying to stop myself
from slipping into denial, but honestly, I don't know how to
avoid it. Despite writing about it for so long, I really cannot
believe God is actually going to take Joshua from me. I
mean, I can *logically* believe it, but emotionally? Totally
not happening.
On Facebook, I had someone ask me if Joshua had taken a
turn for the worse. I wrote back, "I don't know how to
answer your question. Things are different now. Since
Christmas, he has been going downhill. Then, these past 2
days, he has "bounced back". Joshua is telling all of us that
he will be going to heaven really soon. We have no reason
to disbelieve him and based on how he is behaving and
what we are all seeing (as a family and with a friend here
who is watching all of this unfold), none of us would be
surprised if he died today or tomorrow or a week from now.
He's not laying in bed struggling to breathe... there's
nothing obvious that says, "Yep, this is it." So it's hard to
know how to answer."
My friend, Sarah, who has been here since December 31st
(and, sadly, will be going home tomorrow) wrote, " I would
add they are reporting what they are experiencing and
witnessing...no one has any answers.... unfortunately...but
the family is profoundly sad at times....only Papa knows the
day and the hour....it is difficult to be in this position, like
waiting for a birth almost. Only one you don't want to
experience..."
I thought that was a wonderful analogy. Really perfect. We
see signs that things are getting close to the time Joshua
will go be with Jesus, but just like with impending labor,
where it can be difficult to know if the pangs you're feeling
are going to lead to the baby arriving tonight or in two
weeks, that is what we are experiencing. All signs point to
the end being very soon, but we have no real idea when it is
actually going to happen.
Things Joshua has said/done over the past few days:
Told us, "Two angels will come tell me, 'Joshua, your room
is ready!' Then they will grab my arms and take me to
where heaven is."
David, Isaac & Joshua were discussing why Joshua gets to
go to heaven first. David said he wants to go first and
Joshua laughed and told him he can't. Isaac piped up,
"Then I'll just sneak in the back door!" Joshua told him,
seriously, "There's only one door into heaven. There is no
back door to heaven, and the door has to open for you to go
in."
He informed everyone in the truck (on the way home from
getting Slurpees at 7-11) that two angels were outside each
window of the truck, watching him.
Told us angels are outside rather than inside because they
watch us when we are out doing things.
He hasn't gone to heaven yet because the door hasn't
opened. I think he is talking about a spiritual door versus a
literal one. Like God has to give permission and then the
angels can come in to escort a child to heaven.
Informed us that you have to tell the angels your
name. "Like if your name is Parker... wait... what is your
real name?" "It's Kate." Picking up where he left off...
"Okay... then you have to tell the angel, 'Hi. My name is
Kate.'" He said you have to tell them your name so they
know who you are.
Told us, "Angels can't be killed. They are invincible."
Told us, "My room will have a picture of me hugging
Mommy so I can remember hugging her because I love her
so much."
Yesterday, January 5th, Joshua did the following things that
he hasn't done (or been able to do) for ages:
~ Came downstairs REALLY happy and was hugging
everyone. Then he played poker with the kids. His head
wasn't hurting at all.
~ Ate dinner with the family, sitting at the table. He ate a
roll & a bite of cheeseburger & drank 4 ounces of root beer
from an open cup.
~ Walked with the heels of his feet hitting the floor for over
50% of his steps. His back is so tethered that he hasn't
been able to do that for a long time, so why he suddenly
can is interesting, to say the least.
~ Wanted me to carry him and wrapped his legs around my
waist, holding on by squeezing his legs together.
~ Wanted to go to Wal*Mart (got ice cream, legos,
danimals).
~ Wanted to go get a Slurpee. Drank the entire thing.
~ Ate an ice cream bar, 2 small pieces of pumpkin cake, a
danimals (strawberry).
~ Ran to get toys. His version of running, but it was still
running.
~ Happily took pictures with everyone. Smiled for every
single one.
~ Played legos for hours.
~ Did not hock & spit except a few times all day.
~ Was a lot more animated and chatty and active than
usual. Had a lot more energy.
~ Wanted to cuddle with me for longer than usual. Hugged
me over & over & kissed me repeatedly. Said, "I like
kissing you. I never want to stop kissing you." Rocked
while wrapping his arms around my neck. Held me with
his body facing mine and legs wrapped around my waist
(hasn't been able to do that for a LONG time).
I know there were a few other things (my friend, Sarah, and
I were talking this morning and we remembered a few that
I hadn't written down), but I can't remember them right now
as I write this (of course! Sleep deprivation in
action!). Anyway, the point is that we've been watching
Joshua decline ~ obviously and significantly ~ since the
day after Christmas, so to have everything that happened
yesterday occur was really.... unnerving, actually. Maybe it
should have brought me peace, but it didn't. All 5 adults in
the house were perplexed and constantly raising an
eyebrow at yet another thing Joshua was doing or saying
during the day. Yes, we enjoyed the time with him ~ it was
absolutely beautiful to have the Joshua of long ago back for
a visit ~ but it was unnerving because we've all read
enough to know that dying people often rally for a good
period right before they die. It was difficult to see Joshua
rallying (even while simultaneously loving how active &
happy he was being) & listen to his chatter throughout the
day about angels and how he's going to heaven really soon
and not feel nervous.
Today, he is much more like he's been for the past week in
terms of quiet mannerisms, reserved nature, lower activity
level & not really interested in eating or drinking, but he's
still not in pain. It is a wonderful thing to ask, "Joshie, how
is your head?" and hear him reply, "It doesn't hurt AT
ALL! It hasn't been hurting all day, Mom!" Talk about a
gift from the Lord!
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Written January 6, 2013 1:08pm by Kate Parker
Thank you for praying for us. Please continue to cover my
family, as Joshua has been talking A LOT about
leaving. He is peaceful, he is smiling endlessly, he is
HAPPY in a way we haven't seen in probably over a year,
and he is doing things he has not been physically capable of
doing and/or has desired to do in months. We made a list
last night of everything he'd been doing that day that he has
not been able to do and got to 17. He is seeing angels and
hearing them talk A LOT and he is freely talking about
going to heaven and how two angels are going to come to
him and say, "Joshua! Your room is ready!" and then they
will grab his arms and take him to where heaven is. As an
afterthought, he tells us, "Then the angels will come back
for you." He told Aunt Sarah that an angel would come for
her, too. :) Yesterday, when I asked him if he knew when
he was going to heaven, he thoughtfully replied,
"Tomorrow. Probably." Sarah & I kind of just looked at
each other with that one. Last night, Joshua told Megan
that he had asked God to tell the angels to tell HIM when it
was time to go. He still assures us he will tell us when it's
time. I am praying (begging) that we will be given the
opportunity to hear him tell us he loves us one more time
when the moment for him to leave comes.
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Written January 5, 2013 10:32am by Kate Parker
Megan, Adam, Emily, Sarah (my friend), Joshua & I went
to bed at the same time last night. After all of the "good
nights" and hugs and kisses were complete, I was snuggled
under the covers, cuddled up against Joshua with my arm
around him, just about drifting off to sleep, when a deep
belly laugh startled me. Before I could say or do anything,
Emily's voice came out of the darkness, asking, "Joshua,
what are you laughing about?"
"It doesn't matter," he replied cheerily.
"Um, this time, it really DOES matter, Joshie," Emily
countered.
"I don't remember," came the answer in a "Sorry, not gonna
tell you!" kind of sing-song voice. I spoke up, asking,
"Joshie, what were you laughing about?"
"I was just talking," he told me.
"To the angels?" I asked since I knew he hadn't been
talking to any family member.
"Yes," he answered.
Emily, who doesn't typically sleep in the same room as
Joshua, asked with some excitement, "Are the angels here,
Joshie?" When her brother told her they were, Emily
asked, "What are they saying to you?' Joshua hesitated for
a long moment and I had an insight, so I gently and quietly
asked, "Joshua, is it time to go to heaven now?" His little
hand reached up to hold my arm, which was wrapped
around his waist, and he answered with certainty, "Not
yet. The angels say it's not ready yet."
I asked him, "What isn't ready? Your room in heaven?"
"Yes," came the steady reply. "It's not ready. The angels
say it's almost ready, though."
I couldn't speak. I hugged Joshua tightly, kissed his head,
then got out of bed to go to the bedroom next door where
Sarah was still awake so I could tell her of this
conversation. Joshua was now talking with great
enthusiasm to Emily and I wanted my friend to listen
because honestly, I can relate the conversational details to
the best of my ability, but witnessing it is a whole different
experience. Sarah & I stood in the doorway of the bedroom
next to Joshua's room and quietly listened, not saying a
word, as Joshua explained what his room was going to look
like and how great heaven is going to be. During the
course of the conversation, he told Emily that when the
angels told him his room is almost ready, that is what made
him laugh (the laughter that we had heard). He told her
that he will go to heaven soon, after his room is ready.
He is so excited.
It's like he has a ticket to Disneyland and he's counting
down the days before he finally gets to go.
This little boy, who is so quiet and reserved for most of his
awake hours now, was animated & chatty & giggly & SO
full of happiness as he excitedly told Emily what the angels
were sharing with him about heaven. And Emily was
amazing ~ sharing her baby brother's excitement, agreeing
with him that oh yeah, it's going to be awesome and saying
things like, "I am so jealous that you get to go first! I want
to go, too," which made Joshua laugh and then answer,
"You can't go yet! The angels say your room isn't ready,
too!" Emily asked what her room was going to look like
and he laughed as he told her, "It's a surprise!"
Joshua got quiet after that for a brief moment and Emily
asked, "Are the angels still here?" He answered, with
dejection in his voice, "Noooo, they're gone now." Then he
brightened a bit and said, "They say they're working on my
room. I think that is why they have to go."
When I crawled back under the covers, Joshua told me that
the angels were working to finish his room, saying, "ALL
of them are working!" I hugged Joshua and told him I
thought it was great that the angels were finishing his room
for him. Then I snuggled against him once again, kissed his
cheek (and received a kiss), told him I love him and will
love him forever, listened to his sweet, tired voice tell me,
"I love you forever, too. Mommy mommy mommy... I
love you," and then I closed my eyes, knowing the time of
being able to hold Joshua as he sleeps is getting shorter. I
feel joy for the healing that is coming for him, but the depth
of that happiness is equally matched by the sorrow I feel
for the pain that is coming for the rest of us once Joshie is
gone.
................
On a different, but related, note, for the past 2 days, Joshua
has had periods of time where he has felt no pain
whatsoever. The first day, Megan told me she believed
Joshua was being supernaturally protected. Yesterday,
Joshua was cuggling in my lap & he looked up and said
with complete wonderment, "My head isn't hurting at
all!" I smiled, told him that was wonderful, then asked if
he thought maybe God was making his head not hurt. He
nodded and said, "Yes, He is." I told Joshie I thought
maybe God was making his head not hurt so he could see
what it was going to be like when he gets to heaven and
never hurts ever again. Joshua smiled a HUGE smile,
nodded and said, "I know He is!"
The pain-free periods are not long-lived (a couple of
hours), but the fact that they're happening at all is truly
miraculous and there is no medical explanation for it. I am
convinced God is giving Joshua the respite from pain as a
gift to my entire family. Joshua gets a taste of what heaven
will be like as far as him not having to hurt anymore and
the rest of us get some glorious hours with a Joshua who is
HAPPY because he isn't in pain. It's as amazing and
wonderful as you could imagine. It will also be a memory
that helps bring us comfort once Joshua is gone... knowing
that he isn't hurting versus hoping that he isn't. And yeah,
the thought has passed through my head that if God can
make Joshua pain-free here (on Earth) for a few hours, He
could easily make him pain-free here forever, but I know
that His ways are not my ways and whatever plan He is
working out doesn't have to make sense to me, even though
I'd really like for it to. I don't know why Joshua can't stay...
I don't know why God won't simply heal him... but I still
believe that even though it's going to be completely awful
for those of us who love Joshua, God's plan for him is
better than my own, and I don't have to like what is
happening to trust Him.

Written January 3, 2013 11:14am by Kate Parker
Sharing what I just wrote on my Facebook wall because I
don't have the time to write up a proper journal entry but
would still appreciate prayers (the Sarah I reference is not
my 11 year old daughter, but a very special friend who is
visiting from Oklahoma):
The beautiful & awful continue to collide... Joshua started
having seizure-like activity yesterday in his sleep. Then,
when he woke up, he was "woozy" (his word) & asked to
be carried & was off-balance when he tried to stand. His
head was hurting everywhere (versus just on top like
always), especially the back of it (hello, chiari). He needed
several breakthrough doses of oxycodone, which is
significant since A) he hasn't been needing any and B) he
was only awake for 7 hours & got scheduled doses in that
time. Then, after Sarah, Megan & I got back from watching
Les Mis, Joshua began desatting into the low 80's/high 70's
and encouraging him to breathe did not work to get his
oxygen level back up. Each time he went down, we had to
wait for it to come back up on its own. Hello, central apnea
that is 100% brain-stem-dysfunction-related. In order to get
any sleep last night, I finally put his parameters way down
so his pulse ox would stop alarming. At one point, his heart
rate was 26 (prior to going to sleep; Adam was trying to
play with him to get it up again ~ you know, by making
Joshua laugh & be more active in the bed ~ but it wasn't
responding).
I knew we all knew this time would come... the time where
we would begin seeing the signs that his brain stem is
getting squished again... apparently, that time is here. I
have no idea how quickly this will progress to where we
know this is leading. I know God is here and He isn't going
to drop any of us and that is very comforting. It doesn't
make this hurt any less, though.
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Written December 30, 2012 1:01am by Kate Parker
After changing his medication doses back to what they
were & giving him a couple of days to readjust, Joshua is
once again feeling as good as he gets. He slept until a little
bit before 6pm, had a bath, and has been cheerful and,
though quiet and more reserved than usual, he has not
needed extra pain medication at all today. It's a mostwelcome blessing.
Thank you for the lovely, supportive comments and for
sharing my disbelief that someone would snark at me about
either Bethany or Joshua. You soothed my hurt & with as
raw as I am feeling right now because of the seriousness of
my little girl's condition, I am deeply grateful to everyone
who came alongside and hugged me with their words and
assured me that the majority of you DO understand what it
is I am trying to express when I share my heart through my
journal entries. Thank you for that. Caringbridge does not
allow blocking of people, unfortunately, but that's
okay. God uses all things and He won't allow this situation
to be wasted. I'm not going to concern myself with how He
will use it; it's enough for me to know that He will, in His
time. And, as I said, I am so thankful for the outpouring of
comfort tonight. I needed it. Thank you for caring the way
you do.
Joshie asked me last night if Beppy was going to die. I told
him that she is very sick and yes, she could die. He let out
a little sad noise & said, "Oh, I don't want her to die!" I
told him, "I know. I don't want her to die, either." He said,
"No," in a 'you're not understanding, ' voice, then went on
to explain, telling me, "I want to go first. I want to meet
God and the other God who isn't God but is God's Son." I
asked, "You mean Jesus," and he nodded in
affirmation. That surprised me because we have never tried
to explain the Trinity to Joshua, so how did he know that
God is God and Jesus is part of God while being a separate
entity? I believe the angels explained it to him and it brings
me a sweet peace to KNOW where my little boy will be
going after he dies.
Anyway, Joshua told me that he wanted to go to heaven
first and then Beppy could come second (he says "two"
instead of "second" because he can't use ordinal numbers
very well anymore) and then I could come third ("three"). I
gently teased, saying, "Hey, I thought I got to come to
heaven second after you! That's what you said before!" He
smiled, hugged my neck and said, "I know, but I love
Beppy and I think we go to heaven together!" All I could
muster as a reply was, "Wow!" Joshua smiled, nodded and
asked, "Don't you think that will be great?" I took a deep
breath before answering, "Yes, Joshie, I think it will be
great that you and Bethie can play together in heaven. That
will be fun for you both." He agreed, saying, "Yeah!" I
asked him, "What will you play?" He thought for a
moment, then told me, "We will play a pirate game. We
will hunt for cwedure (treasure)." I told Joshua how much
fun I thought he and Bethany would have playing that
game. Then he told me, "I think we will swing, too. And
then I will tell Bethany, 'Hurry up, Slowpoke!'" (he started
giggling as he said that). I giggled, too, then asked, "Why
will you call her that?" He answered, "Because she's tiny,
so she will run slower than me. So I will tell her to hurry
up, Slowpoke, because we have to go meet Mommy!" At
that moment, I was reminded of the email I received
several months ago from someone I do not know who told
me about a dream she had where Joshua was in heaven,
playing on a playground, and he'd been with a little girl
with blond pigtails and he ran off because he said that
Mama would be here soon. Joshua then said, "In heaven,
Beppy and I will both not have ports. And we won't have
g-tubes. And we won't have wheelchairs. And we'll both
run. And when Beppy goes, "Uh!" I will know what she is
saying because she will be able to talk!" I agreed with him,
telling him, "You're right; you two are going to have so
much fun playing together." He nodded and said, "I
know. I get to go first and then Beppy can come with me."
It is only by the grace of God that I don't fall to pieces
when Joshua talks to me like this. I can't recount these
conversations with anyone without crying, but at the time
Joshua and I are talking, God gives me the ability to
converse with my son as easily as if we were talking about
where to go out to eat for dinner. It's a gift from the Lord
that I am SO thankful for.
A couple nights ago, Megan and I were chatting about
Bethany and Joshua and Megan mentioned that we
probably should look into buying an urn for Bethany since
we are probably going to need it. We sat together, looking
at the website where we purchased Joshie's urn, and Joshua
came over to see what we were doing. I told him we were
looking at pretty boxes and he recognized his, saying, "That
is the one I like!" I agreed that it is beautiful and he said,
"We have that, right?" I assured him we did. He asked if
he could see it, so I sent Emily to get it off the shelf in
Charley & my bedroom. Joshua looked it over carefully,
admiring the pretty fall scene that wraps around the oak
box, then turned his attention to the "boxes" on my
computer screen. He pointed to one and said, "I like that
one. It has butterflies. Beppy likes pink." No one had told
him the box would be for Bethany and I honestly don't
think he knew what we were looking for (he hadn't
overheard Megan and my conversation; I am 100% certain
of that). I told him, "Yeah, I like that one, too." Joshua
began to walk away, then turned back and asked, "What
goes in those boxes, anyway?" I paused for a moment,
thinking of how to answer him, then said simply, "Really
special things go in the box." He tilted his head as he asked
me, "Will you put something special in my box?" All I
could get out was, "The most special thing I can think of,
Baby."
On the evening of December 26th, he asked Megan & me
when his birthday is. I told him, "March 2nd." He asked
how many days that was and I told him, "66." He wanted to
know, "Is that a long time?" Megan answered, "Yeah,
Buddy, for you, it is." He asked if his birthday could come
sooner. He wasn't asking if he could have a party or
presents, but if I could make March 2nd come faster than
66 days. I sadly told him that no, I couldn't do that. He
sighed dejectedly, then said, "Okay." I cuddled next to him
and quietly said, "Joshie, we will celebrate your birthday
and it won't matter where you are. If you're in heaven, we
will celebrate your birthday and if you are here, we will
celebrate it. March 2nd will always be your birthday,
Baby." He rolled over to his back from his side and hugged
me. That is the reassurance he wanted.
That is what my days are filled with now. Beautiful
mingling with awful. Sweetness mixed with pain. Worry
alternating with peace. I have spent today crying on & off
and desperately, determinedly searching for God in the
events that are unfolding. I don't claim to have ANY idea
what His plan is. It *seems* as though life could end soon
for both Joshua and Bethany, but I am not going to say that
I think they are both going to die soon simply because I
don't know, and it would seem pretty melodramatic to
make that kind of announcement and have both of them go
on to live for months. What I AM aware of is that both
Joshua & Bethany have become much more-fragile and
Joshua, especially, is tired in a way he hasn't been before.
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Written December 29, 2012 8:49pm by Kate Parker
Written 33 minutes ago
you said
I'll be completeely honest that if Bethany is going to die
(yes that's a real possibility)
I really hope & pray God will let Joshua stay a while
longer....
Well that just breaks my heart
How and why would you feel that way
What if it's the other way around?? Sorry but that's
just not right.
Bonnie Haines
THIS is proof that no matter what I say, SOMEONE is
going to completely misunderstand my heart and what I
meant.
Let me re-explain this: the thought of Bethany dying
devastates me. The thought of Joshua dying devastates
me. The thought of losing BOTH children is horrific
beyond anything I can put into words. I seriously cannot
fathom how anyone would not understand why I would say
if Bethany is going to die from what she is going through
right this second, I really hope that God would give us a bit
more time with Joshua so that I don't have to deal with
funeral arrangements for 2 children simultaneously. That is
ALL I meant! I don't want to lose EITHER of them!!! If
Joshua dies tonight, I pray God would give us a bit more
time with Bethany. Again, for the exact same reason!!! It's
not a matter of preference. I love them both.
I am seriously sick of the comments implying or outright
saying that I favor Joshua over Bethany and if you are
sitting there, dissecting every sentence I write as you try to
find something that supports YOUR belief ('cuz it's your
problem, not my reality), then please don't
comment. Extend me some mercy and grace. Try to
understand that if I don't say something perfectly (in your
opinion), I am under a tremendous amount of strain and I
am doing the very best I can to manage 2 very-ill children
and their 6 siblings. I am not taking the negative comments
to heart, but I would like to be able to come to my
children's caringbridge pages and not have to encounter
tactless or rude or nasty or insulting or hurtful comments. I
really don't think that should be considered an unrealistic
expectation! :)
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
Written December 29, 2012 3:52am by Kate Parker
I won't be taking Joshua to Portland this next week to see
Dr. T. Two reasons. First, he is now getting nauseated &
vomiting when he takes a car ride for more than a couple of
miles and, as such, we don't think it would be safe to try to
get him to Portland via car, as he would vomit repeatedly
and that would land him in the ER, at minimum, to get IV
fluids. He had his port flushed today & vomited on the
way home. It took him a couple of hours to get past the
nausea (even with Zofran) and since all of his meds go into
him via g-tube, we just can't risk putting him in a situation
where copious vomiting is an almost-guaranteed result.
The second reason I won't be taking Joshua to Portland is
because Bethany is in the hospital again (locally) with
congestive heart failure & a small GI bleed & a possible
infection. Again.
Joshua is fading. He is tired and lethargic most of every
day. It's hard to explain and honestly, it is a few minutes
before 2am, so I can't take the time right now to write it all
out, but I wanted to mention it so I will remember to
explain more fully in a day or two when I have the time and
presence of mind to write an actual post versus a short
update. The way Megan described it is that it's like Joshua
was hanging on for Christmas and now that it's over, he's
letting go. We're not trying to make him hang on, either,
but I'll be completely honest in saying that if Bethany is
going to die soon (yes, that's a very real possibility), I really
hope & pray God will let Joshua stay for awhile longer
because I don't know if I could deal with losing two of my
kids in a very short span of time. I am still trying to wrap
my mind around how we can even be at this place where it
would even be a possibility!
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Written December 28, 2012 1:36am by Kate Parker
I'm confused. Dr. T wanted to get Joshua to where he was
not needing any breakthrough doses of oxycodone. He
wanted him getting just his Q4 (every four hours) dose plus
his methadone & fentanyl patches. We'd finally gotten
there, and then Dr. T wanted to try cutting down on the
amount of oxycodone we were giving Joshua Q4. To do
that, he increased the methadone doses that Joshua gets Q8
and decreased the Q4 oxy doses. That did not work well
AT ALL and Joshua started requesting breakthrough
medication left & right. After a few days of that, I decided
to go back to what HAD been working, so I lowered the
methadone back to what it had been & increased the
oxycodone to what it had been, thinking that we'd go back
to the pain control we'd had, which had been working well
(ie: no breakthrough doses of oxycodone). That isn't what
has happened, though, and I don't understand why.
Joshua is back to requesting breakthrough oxycodone 2-3
times per day. That doesn't sound like a lot, but when you
think about how he gets oxycodone every 4 hours around
the clock and how he's typically awake for 8-12 hours per
day, then you can better understand how him wanting
breakthrough medication even 2-3 times is actually quite a
bit.
I head up to Portland next week with both Joshua &
Bethany, so I'll be able to sit down with Dr. T & hopefully
get this all figured out. We can manage until then, but
honestly, it is SO confusing to me what this little boy's
body is doing! I try to approach things logically &
Joshiebear is seriously defying logic sometimes, which
makes this whole pain control thing a lot more challenging
than it should be.
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Written December 26, 2012 1:46am by Kate Parker
The change-up of Joshua's medication (increasing
methadone while decreasing oxycodone) has been a big ol'
FAIL. We are going back to what was working since he
wasn't needing breakthrough doses of oxy & even though
his head still hurt, it wasn't bad enough that he was
complaining throughout the day. With the latest change in
medication dosages, his "head hurts badly all the time"
(what he tells us) and he's needed breakthrough oxy.
Sooooo... nope! We're switching back, effective
immediately. I hope his palliative care doctor is okay with
that. I can't imagine why he wouldn't be.
Charley & Adam worked today, so we're having our
Christmas celebration tomorrow. Joshua is *very* excited
to open presents again. He thinks that having 2
Christmases is a pretty fantastic way to do things. Emily,
David, Sarah & Isaac are in full agreement! LOL I admit,
it's been a lot of fun.
I'm off to give midnight meds & then head to bed,
myself. Thankfully, my kids don't wake me up at the crack
of dawn, so I'll get up after giving Joshua his 8am meds to
make monkey bread, bacon & eggs for the family and then
we'll play board games and hang out until Joshua wakes up
for the day. Then it will be time for unwrapping the gifts
and I anticipate the level of excitement will be high. I can't
wait! I don't care so much about getting presents,
myself. What I love the most is watching the expression on
my kids' faces when they unwrap something that I know
they've really wanted. It makes me happy to see them
happy, which means tomorrow will be a wonderful
day! Yes, there's a twinge of sadness that tries to creep in
as the thought that this could very well be Joshua's last
Christmas swirls through my head, but I remind myself that
we thought that last year, too, and he's still here, so why not
believe he could still be with us in December, 2013? Okay,
yeah, I know it's not the most-logical thought, but it keeps
me from getting mired down in melancholia, so I'm going
with it. :)
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
Written December 24, 2012 3:46pm by Kate Parker
Here we are once more. Christmas Eve. And Joshua is still
here, enjoying life to the fullest that he is able. Absolutely
amazing. A year ago, I said it would most likely be our last
Christmas with him. Everyone involved in Joshie's care
thought he would die in the beginning of 2012. While I
honestly cannot imagine that he'll be able to live another
year, I've learned not to make assumptions. My little man
is writing his own book & doing things his way. I have no
idea how much longer he can go on, but oh, how happy my
heart is today that God gave us another year to smile with,
laugh with, hug, hold, kiss, cuggle & enjoy Joshua. I didn't
ask for anything this Christmas because I already got the
gift I wanted most.
We increased his methadone again and, as such, we're
seeing the typical resulting increase in sleepiness. We
decreased his oxycodone dose, so we're hoping that after a
few days of getting accustomed to the new dosage of
methadone, Joshua will be less tired.
I took Joshua in to see his pediatrician because of the
weird "hocking" noise he makes. I was hoping he had an
infection or strep ~~ you know, something easy & fixable.
No such luck. After examining him & chatting with me
about what we see going on, Dr. S sadly told me that she
thinks this is chiari-related. As soon as she said that, it
made sense. I mean, duh, I've watched chiari symptoms for
years. Why didn't I think about it? Probably because I know
we can't do anything for it.
So, we're keeping track of what Joshua eats & when the
hocking is worse so that we can start trying to limit his
eating of things that make the symptoms worse. He is much
more brave about the situation than I am. I explained to him
that if a food makes him feel like he's choking, he probably
shouldn't eat it anymore, and he started listing foods that he
said he can't eat. There are a few that cause him trouble, but
he's not ready to give them up for good yet and I'm not
ready to push it at this point. It looks like we're heading
down the path toward Joshua not being able to eat much by
mouth anymore & that makes my heart hurt. God has
given Joshua such grace, though. He accepts every new
limitation and makes the best of it, which is inspiring to
me.
I really am so thankful that Joshua is still alive. The new
picture I put up was him being silly. He asked me to take a
picture & when I grabbed my camera, he stuck the candy
cane sideways in his mouth & tried to smile around it. The
picture is not edited at all except for cropping it. His
coloring is pale with a grayish-purple tint. At times, he has
very dark circles around his eyes and when he's not
oxygenating well, the skin around his mouth and nose get
darker gray, too. It is shocking to look back 6, 12 or 18
months ago and see how much healthier he appeared even
though he really wasn't. Megan, Adam & I have talked
together & wondered how much worse things will get.
What's interesting is that whenever we see people who
know us, we get told that Joshua looks really good. People
who don't know us act concerned by Joshua's
appearance; in fact, there were two well-meaning strangers
in Wal*Mart who were worried that he wasn't breathing
since he was so gray (he was really tired). I suspect that
our friends don't know what to say & they don't want to
hurt our feelings, so they try to ignore the obvious & just
say Joshua looks good. I have a couple friends who are
always completely honest with me & it is a huge relief to
have them validate what my family sees every day. They
are the friends who will cry with me over the changes we're
seeing. The ones who will quietly tell me in very sad
voices, "Oh Kate, he looks awful now!" Maybe that sounds
mean of them, but you know, it's not like we think he looks
healthy. We know he doesn't. Having others acknowledge
that truth is refreshing. When someone says, "He looks
great," all I want to respond is, "Yes, gray is really his
color, isn't it?" Maybe they don't expect to see Joshua
walking or talking or sitting at the computer playing a game
or out of the house in his wheelchair and that's why they
think he looks great. I don't know. I think they want to
make me feel better, but don't know what to say to make
that happen. I wish I could whisper in their ear that the
truth, spoken with love, is always the best path to take. I
think it's fantastic that Joshua is still capable of doing
things that bring him enjoyment. I am thrilled that he still
has a quality of life that makes all the work we put into
keeping him comfortable totally worth it. I am filled with
gratitude that God has given us so much more time than
anyone thought possible when Dr. W did the last surgeries
a year ago. It's okay to acknowledge the truth of what we
see, though, and admit that yes, Joshua is not looking as
healthy, that he's wearing out, that it's sad that he's losing
so much as he moves closer to the time he will leave us and
go to be with Jesus. One of the many things I have learned
on this journey is that it is entirely possible to feel two
contradictory emotions simultaneously. I can honestly say
that I am tired of living in limbo, waiting for this awful
event to occur & wishing it would just happen to get it over
with while also never wanting Joshua to die. Totally
contradictory, but totally honest. And yes, I know the day
will come when Joshua dies and I am brokenhearted and I
will write that I would do anything to have him back and
someone will leave a snarky comment telling me how I had
written that I couldn't wait for him to die even though that
is not at all what I am actually saying. There's always
someone who is a jerk like that, someone for whom reading
comprehension is a big challenge, but they always manage
to work a keyboard to spew their toxicity, unfortunately.
I know this entry is all over the place. That's fitting, since I
feel like I'm all over the place these days. There is much I
would like to write, but right now, I don't feel I can because
too many strangers would misunderstand and then ream me
with hurtful comments. I know there are a lot more of you
reading this journal who are caring, compassionate people
and even if you didn't fully understand where I was coming
from with something I wrote, you wouldn't be mean to me
about it (I greatly appreciate that, by the way), so maybe I
will dare to share more at a later date. Right now, though, I
am still stinging from a nasty comment left on Bethany's
page (Megan & I both responded, but after 10 hours &
sleeping on it overnight & talking it over with a friend, I
decided to delete the comment & our responses). To be
completely honest, I am feeling like I never want to write
one more word about either Joshua or Bethany in a public
forum because it hurts too much to be kicked when I'm
already down, so that is why I am writing a journal entry
here right now. I know I don't have a lot to say, but I also
know I need to write something so that I don't give in to the
temptation to disappear. I'm sure there are people who
would celebrate if I were to fall off the face of the earth
since they think I am such an awful, selfish mother who
hates my adopted daughter and completely favors my
biological son, but you know, I don't really want to give
them the satisfaction of letting that happen. I'm a brat that
way, I guess.
Coming home & getting back into the new routines that
always result from a hospital stay & a couple new
diagnoses takes me a few days. Adding a major holiday in
that mix seems to extend the time it takes me to
readjust. I'll bounce back and return in better form. In the
meantime, MERRY CHRISTMAS!!!
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Written December 19, 2012 7:41pm by Kate Parker
This time of being separated from Joshua as I am 250 miles
away in the hospital with his baby sister has been
tough. The first few days were actually, surprisingly, not
bad, but then, last night, Joshie asked me when I was
coming home & I had to gently tell him I didn't know, but
hopefully it would be soon. He told me he wants me to be
home with him. That he misses me. That he loves me.
And my chest ached as I told him I love him forever.
I hung up the phone and sobbed.
I miss my son. I miss all of my kids, but I miss Joshua the
most because I know time with him is slipping away, so I
want to be with him as much as I can. Each day that I'm
away from him, the ache to go home and scoop him up gets
stronger.
I laid on the hospital couch/bed and had a realization of
how bad it is going to be when I am missing Joshua and
longing to hug him, to hold him, to kiss his cheeks and
smell his hair, but I can't because he won't be here
anymore. That insight was horrifying.
I cried myself to sleep last night.
This totally sucks.
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Written December 14, 2012 10:37pm by Kate Parker
While things with Bethany have not yet improved (see
update I just put up), I have one bit of good news ~ Joshua
has not needed any breakthrough oxycodone today after the
latest increase in his methadone doses and, according to
Megan, he's had a good day today.
YEA and THANK YOU, GOD!!!
Just thought that in the midst of the stressful stuff with
Bethie, I needed to give a shout-out for the good stuff,
too. :)
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Written December 14, 2012 6:12pm by Kate Parker
I try to not mix Joshua & Bethany's medical stuff by
keeping her information on her page and his info
here. HOWEVER, Bethany needs prayer. I brought her in
for a routine medication infusion and she wound up in
PICU and we still don't know what is going on.
Please read the short update I put on her page:
http://www.caringbridge.org/visit/bethanyparker
And please pray!
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Written December 13, 2012 10:52pm by Kate Parker
Yesterday, I spent the day in Portland with Bethany &
Adam for an appointment with Bethany's
rheumatologist. After the appointment, I was able to sit
down with Dr. T, Joshua's palliative care doctor, and two
friends who work as a Child Life Specialist & a Chaplain at
the hospital, for a long chat. Dr. T couldn't stay for the
entire visit, but while he was there, we talked about Joshua,
his medications, how he's doing & where we see things
going from here. Dr. T increased Joshua's daytime doses of
methadone by 25%. The goal is to get to where Joshie does
not require any breakthrough doses of oxycodone during
his awake hours. With each increase of methadone, we are
getting closer to reaching that goal. We also make him
sleep more.
Talking with my two friends was a huge gift. I try to
connect with both Lynn & Merv whenever I'm in Portland,
but with their busy schedules, our visits have to be short &
sometimes we can't work out a time to meet up. Yesterday,
though, they were both miraculously able to carve a little
over an hour out of their day to spend with me. Honestly,
that time was an answer to an unspoken prayer of my
heart. Do you realize what a conversation with a child life
specialist and a chaplain who have walked beside me
through almost every surgery, every hospitalization, every
truly scary time with Joshua means? It means I can say
ANYTHING and they totally "get it". They both have a
depth of understanding regarding terminal illness & death
that most people just don't possess (understandably). They
also know me very well, so they understand how I process
medical information & a lot of the emotions that go along
with parenting Joshua (and Bethany). Things I don't even
attempt to write for fear of being misunderstood or thought
horrible for feeling or thinking what I do are things I can
openly talk about with Lynn & Merv. They have a way of
making me feel normal... of validating my feelings
regardless of how clumsily I express them. I'm not saying
that there are not others who read here & comment who do
that for me, too, so please don't get your feelings hurt... I'm
simply saying that being able to talk & share my heart with
two friends who have been with Joshua & me through thick
& thin over the past few years was exactly what I needed
yesterday. They let me cry a little, they laughed with me,
they said all the right words & none of the wrong ones and
they hugged me a lot. It was truly perfect. It reminded me
that God cares. That He sees it all, He knows what I need,
and He is able to do exceedingly more than I could think to
ask for (Ephesians 3:20).
Joshua is all right. His breathing is a bit more labored now
and he says he is tired all the time, but he continues to push
through the fatigue to participate in activities he
enjoys. Those activities are getting more narrow ~
meaning, he isn't doing as much as he did a month ago ~
and I attribute that to his decreasing energy. He likes it
when a sibling makes up a bed of blankets on the floor for
him to lay on, snuggled under the blankets with me or a
couple of siblings (or me AND a couple of siblings!). The
computer is still fun for him, though we frequently find him
sitting still, holding the mouse but doing nothing, as he
zones out for a few minutes. In the past few weeks, he has
been spending more time playing with Isaac, which has
been really sweet to see. He is still "hacking" (sounds like
he's trying to hock up some phlegm) periodically
throughout the day, typically after he's eaten, which makes
me suspect he's not getting food down all that well
anymore. After he eats a tiny amount, he says his belly
hurts and we respond, "Okay, stop eating," since there's
nothing we can do about it. He tells us daily that the side
of his belly hurts. It is the side where both of his shunts
drain and I am sure the tubing is encased by scar tissue, so
I'm guessing that the scar tissue is pulling and causing the
discomfort.
Overall, I'd say Joshua is happy 80% of his day. Dr. T told
me that was actually really good, considering where we're
at. He said (again) that Joshua is not doing anything the
way we expect him to, but hey, that's how my little guy has
rolled his entire life, so why would we expect him to
change his style in the last inning of the game? *smile*
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Written December 9, 2012 11:41pm by Kate Parker
Treasure map drawn tonight
by Joshua. I labeled what things were as he explained it to
me. Yes, it's hard seeing him scribble like a toddler when
he used to be able to draw in an age-appropriate fashion,
but it has been so long since he's put pen to paper & he was
so proud of his creation that after a momentary twinge of
sadness, all I felt was joy as I praised Joshua and thanked
him for his masterpiece. I'll be saving this map forever. :)
When Joshua woke up this afternoon, he wanted to cuggle,
which is something I'm always happy to oblige. As he
snuggled in my lap, Emily & Sarah sat on either side of me
and the four of us watched videos of the kids from over the
years. We saw lots of clips of Joshua when he was
climbing, swinging, talking, running and riding his trike &
scooter. All of the kids thoroughly enjoyed the trip down
Memory Lane and seeing the younger version of
themselves. When we were finished, Joshua wistfully told
us, "I want to go back to when I was like that." I hugged
him close & told him, "I know. I wish you could go back to
when you were like that, too." Even fun times are not
immune from inadvertently causing some pain to my heart.
How I wish Joshua could go back to being that little
boy. The one who could physically do all the things he
enjoyed, the one who didn't hurt so badly all day long, the
one who was healthy & strong. If only a wish could make
it happen.
Tonight, we took the kids out to eat at Burger King (a rare
treat) and then we got a new Christmas tree because the one
we had for our mini-Christmas at the beginning of
November was getting crispy. Joshua was exhausted and
not feeling very good while we waited for our dinner. I
suggested to him that he close his eyes & rest so that he'd
feel better when we went to pick out the tree. He complied
and we thought he'd fallen asleep, but after a bit, he opened
his eyes, turned his head & was staring off in the distance.
After watching him for a couple of minutes, I asked what
he was looking at. He mumbled an answer, but all Charley
& I could make out was something about "the angels". All
of us turned our heads & looked, but we didn't see
anything. Apparently, the angels were there to converse
with just my little Joshiebear. :) After they left (Joshua said
they were gone), he perked up and felt better. He enjoyed
looking for a tree, helped pick one, and after we got home,
while the new tree was put up & decorated, Joshua drew
me a "treasure map" (the picture attached to this post) and
"wrote" his name (the circles at the top).
I wish I could see the angels that Joshua sees and I wish I
could hear what they say to him. I also wish that Joshua
could articulate what he hears, but thus far, he's not been
able to do so. Every time anyone asks, "Do they talk to
you," he answers, "Yes." When we ask, "What do they
say," he responds exactly the same way: "I don't
know." And each time, he has exactly the same expression
on his face: a half-smile with a faraway look in his eyes.
Tonight, a thought occurred to me, so I asked him, "Do
they talk to your heart?" He gave me a surprised smile, like
he couldn't believe I knew his secret, and said, "Yes." I told
him I thought that was wonderful and said, "That's why you
can't tell us what they say. They're talking only to
you." He nodded in agreement and seemed relieved that I
understood. I asked, "What do they look like?" He smiled
again and answered, "They look like angels. They have a
lot of light. They have wings." I asked if they were pretty
and he thought about it for a moment before replying, "I
think they are pretty." I asked if they were big or little. He
first answered, "Little," then quickly added, "Actually, I'm
not sure. Sometimes they look little but sometimes not."
I think it's really amazingly awesome that angels visit him
and I really hope the visits continue because Joshua always
seems happier & more peaceful afterwards. I love the
tangible signs from God that He's here, that He cares, and
that He's preparing Joshua to come Home with Him. I
believe the visits from angels are as much for me and the
rest of my family as they are for Joshua. It's assurance for
us that yes, heaven is a real place, God is a real entity, and
the words of the Bible are true. As such, I know I can trust
that God IS working out His plan, He IS good, and He
WILL return for me someday, too. I WILL see Joshua
again ~ I have no reason to doubt it ~ and my baby boy will
be loved perfectly & watched over in the time between
when he physically leaves my presence and when we are
again reunited in God's Kingdom. That is the message I get
from witnessing the angel visits. No, I don't see them for
myself, but it's enough for me to watch Joshua because I
KNOW that he is, without any doubt whatsoever, seeing
exactly what he says he is ~ angels from God. And it's
incredible.
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Written December 7, 2012 12:48am by Kate Parker
I feel guilty for being sad about what is going on with
Joshua when I know so many mothers would probably like
to slap me & tell me to get a flipping grip ~ at least I still
*have* my child, so get over it & save my sadness for
when he's gone. That's understandable advice. Honestly, I
don't sit around being sad all day long every day, despite
what my journal entries may sound like sometimes, but
yeah, there are things that hurt my heart, so I write about
them rather than hold it all inside. I'm not really sure how
to not have bouts of sadness, no matter how hard I try to
simply thank God for each day He gives me with Joshua.
I've said it many times already, but it's still completely true
~ watching the little boy I know slowly leaving, bit by bit,
and being replaced by a shell of himself, is anguishing. It
beats him not being here at all, but it doesn't diminish the
enormity of what is happening.
Megan and I were flipping through pictures on my phone
tonight & we came across several from a year ago. Joshua,
missing his 4 top front teeth, laughing as he sat in his
carseat, his little legs dangling. After admiring how cute he
looked, Megan quietly commented, "Wow, his legs were so
much bigger then!" I'd noticed it, too. It wasn't a deliberate
thing ~ it just stuck out as obvious how much more-healthy
his legs appeared last year compared to the thin sticks
they've become. Sometimes, it isn't until we look at older
pictures that we realize just how much he's changed, but
not for the better. Other times, we only have to look at
Joshua to see the differences.
~ He can't straighten his legs completely anymore, in any
position.
~ His right heel doesn't touch the ground when he walks,
which makes his gait lopsided and unsteady.
~ He lowers himself to the ground very gingerly, moving
like a little old man rather than the 6 year old that he is.
~ His typical wake-up time has been between 4 & 6pm this
week. He goes to bed after getting midnight meds. That
translates into only 6-8 hours of awake time per day & his
methadone was NOT increased this week (it should have
been, but his pediatrician never contacted his palliative care
physician). I'm in no rush to increase it again, as my fear is
we'll see his awake time further reduced.
~ His feet have lumps & bumps where his broken bones
have not healed perfectly. His right foot is significantly
worse-looking than his left. Thankfully, his feet don't
cause him pain. The benefit of nerve damage caused by
spina bifida (who'd have thought THAT would ever be
considered a plus?).
~ He's having increasing difficulty with swallowing... or
something. Whatever is going on causes him to make
noises like he's trying to hock up a hairball. He can't
actually bring anything up & he tries to spit, but totally
can't coordinate that, either. He says he feels like there's
something caught in his throat.
Those are the obvious, anyone-would-notice changes, and
each one makes me sad.
There is more that I wanted to write, but Joshua has come
over, laid himself down and is resting his head on my
leg. He asked, "Can we go to bed? I'm tired, even though I
slept all day." He woke up at 5:35pm. It's now
12:15am. I'm thankful for the 6.5 hours I've had with him
tonight, but now it's time for me to go through the routine
of preparing meds & fluids for throughout the night, getting
Joshie hooked up to oxygen & pulse ox, teeth brushed,
nighttime diaper on, then all tucked in so my sweet little
man can go back to sleep. I will curl up behind him, my
arm wrapped around his little waist, and drift off, myself,
appreciating that Joshua is still breathing next to me. I
know so many mothers who are wishing they had their
precious little ones still with them, so even though Joshie's
decline saddens my heart, I recognize that this time with
him *is* a gift from God & I will try to not let the sadness
overshadow the joy of still being able to hug & kiss my
little boy. I don't want to look back & regret anything.
Good night!
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Written December 5, 2012 2:21pm by Kate Parker
This journal entry is not about Joshua, but I need to write it
because one of my friends needs urgent prayer. Unless
God grants a miracle, her 6 year old daughter, Aziza, is
going to heaven today. This is sudden. There was no
warning.
Two days ago, Janet (Aziza's mom) said Aziza wasn't
feeling well & she feared a stomach bug. Yesterday, she
took Aziza to the hospital, where Aziza coded (stopped
breathing/heart stopped beating) & she was urgently
transferred with a full medical team in the ambulance with
her to a children's hospital, where she was rushed into
emergency surgery. At the time she went into surgery, it
was thought that Aziza had an intestinal obstruction with
possible bowel death, but despite a team of 17 doctors
working on her, no one was able to locate the site of an
obstruction. Aziza was taken to the ICU on a ventilator and
in a medically-induced coma since her abdominal incision
could not be closed due to her intestines swelling.
Five hours after Aziza had been in ICU, her mom still had
not seen her. Aziza was bleeding profusely and doctors
were working hard to get it under control. Janet was told
that the lack of blood flow to Aziza's organs was causing
multiple other complications and her daughter was
critically ill.
Last night, Aziza's kidneys failed. Dialysis could not be
started because she was bleeding too much to get the lines
in.
Overnight, she developed sepsis. Her liver was not
working & her heart had also sustained damage. She was
packed in ice to attempt to bring down her fever.
During shift change of the nurses this morning, Janet had to
leave the ICU. While she waited to return to her daughter's
side, a doctor came out & informed her that Aziza was
deteriorating. Soon thereafter, family & friends were called
to come and Child Life was brought in to assist in
preparing Aziza's 14 year old sister, Samantha, for seeing
her baby sister in ICU.
A friend went to visit and was asked to share the news that
Aziza had deteriorated further and though the doctors were
trying one last thing, the family was saying their
goodbyes. I haven't heard anything more.
I have been alternately crying and asking God,
"WHY?!?!?" This is so senseless! Aziza has overcome SO
MUCH in her little life already ~ WHY would she be taken
without warning, so suddenly, just 3 weeks before
Christmas? It is so unfair. It is so AWFUL! There are so
many children who He is mercifully allowing to live
through the holiday season, granting families time before
they must say goodbye to their child. Why would He take
Aziza? I keep begging Him to let her live. To save her. To
restore her to health in a miracle healing that defies
explanation. I can't fathom a reality where Aziza dies
today. We thought it was a virus... the stomach bug going
around that so many kids and adults are getting! We
sympathized with Janet, saying we hoped Aziza would be
over it soon. NO ONE saw this coming! And honestly, in
my opinion, THIS situation is the very definition of
horrifying.
I know it's not about me or Joshua, but I have not been able
to not think about our situation in relation to Aziza. I think
that it's painful and sad knowing my child is going to die,
but knowing has given me the opportunity to deliberately
make memories & do things like hand castings & voice
recordings & the like. There is time to prepare to the best
of a person's ability for the loss that is coming. I do not
believe that makes it easier to lose a child ~ that pain is
brutal no matter what ~ and with the knowledge that your
child is dying comes a set of its own challenges, but wow,
to watch a friend's child go from healthy to death's doorstep
suddenly, without warning, defies adjectives. Awful,
tragic, heartbreaking, horrible.... those words are not strong
enough. They don't encompass the pain that I feel in my
chest for my friend. I can't make any sense of this and
while I know that God has a plan and what is happening
with Aziza is part of it, I don't get it. At. All.
PLEASE pray for Aziza & Janet & Samantha. Please visit
her blog & leave a comforting word
(http://mylittlewarriorprincess.blogspot.com) or go to the
Facebook page set up for Aziza
(http://www.facebook.com/events/455957801128934/). W
hile Aziza still breathes, there remains hope for a
miracle. This is the season of miracles, right? Please pray
with me that God's will is to grant one to this family that so
desperately needs it.
*** Update: Aziza died at 2:20pm. Please go to her
mother's blog and leave a comforting word for a
situation that defies comforting. I know the Lord holds
Janet & Samantha right now, but that doesn't diminish
the pain. One more child gone too soon. One more
mother scarred forever. One more family torn
apart. Come soon, Jesus. Please. ***
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Written December 4, 2012 9:07pm by Kate Parker
I'm feeling concerned about Joshua. Two weeks ago, Dr. T
(palliative care) began increasing Joshua's dosages of
methadone ~ slowly ~ with the goal being that we
eventually reach a dose that controls his pain sufficiently so
that he does not require any breakthrough doses of
oxycodone. We've reached the point where Joshua is
prescribed the maximum amount of oxycodone the DEA
will allow and, as such, we needed to make some changes
to Joshua's medication regimen since our practice of
increasing his oxycodone dosage when his pain increased
would no longer be possible. On paper, it's a good plan:
once per week, increase the amount of methadone he gets,
then assess how well the increase is working. In reality, the
results are not nearly so stellar and that is what has me
concerned.
Before we began increasing his methadone, Joshua was
requiring 3-4 breakthrough doses of oxycodone each day
over a 12-14 hour time period. By "breakthrough", I mean
that in-between his scheduled doses of oxy (which he gets
every 4 hours), he would need another full dose. So,
essentially, he was getting oxy every 2 hours while he was
awake & occasionally an extra dose if things got bad. Two
weeks ago, Dr. T did the first increase of methadone and
after a week, Joshua was needing 2-3 breakthrough doses
of oxy over the same 12-14 hour time period. He was more
tired from the methadone, but not terribly so, which I felt
encouraged by since our previous attempts to use
methadone as Joshua's primary pain medication had
resulted in him being pretty much snowed (sleeping for the
majority of a 24 hour day). Last week, Dr. T made another
increase in the methadone dosage. As of today (a week
later), Joshua is needing 2-3 breakthrough doses over a 812 hour time period. He is sleeping more and even when
he's awake, he's tired and tells us so. He often "zones out,"
just sitting & staring at nothing (and no, he's not seeing
angels ~ we've asked & he says he's not looking at
anything). We'll touch his shoulder & call out his name to
bring him back to awareness of what's going on around
him. Also, despite no obvious increase in apnea, he is
experiencing more times of feeling as though he can't
breathe well. Yesterday, he even requested oxygen
assistance, which is unheard of. My concern is that as we
continue increasing the amount of methadone Joshua
receives,we're going to see more hours spent sleeping &
less clarity of mind when he is awake. It concerns me that
the last dosage increase did nothing to lower the amount of
breakthrough oxycodone Joshua is requiring, but it did
increase his sleepiness & mental "fog". As one of my
friends would say, "No bueno."
*sigh*
I've been doing a lot of thinking lately about how it is that
Joshua is still alive. The conclusion I've come to (aside
from "God hasn't deemed it time to take Joshua Home
yet.") is that the VP shunt that was placed last November
must be making the difference. Prior to the shunt being
placed in his head last year, Joshua followed a fairly
predictable pattern of developing scar tissue that would
block the flow of cerebrospinal fluid (CSF), which would
put increasing pressure against his brain and, subsequently,
his brain stem, which would result in increasing symptoms
that then led to more surgery. This happened in both
Joshua's head & his back, repeatedly. Last November, after
a 6th chiari decompression did not make a difference in
Joshua's pain level, Dr. W did a last-ditch-effort and placed
a ventriculostomy ~ an externalized VP shunt ~ to see if it
might make a difference. It did, so the shunt got
internalized, and after a few more weeks in the hospital,
Joshua was discharged and everyone hoped he might
survive a few more months. So what happened that would
have allowed him to live another 13 months (and
counting)? All I can come up with is "the VP shunt".
The human body produces about 2 cups of CSF per day
that gets circulated throughout the brain and around it & the
spinal cord. Before Joshua had a shunt in his brain, scar
tissue would block the CSF and we'd see signs of increased
cranial pressure from the backed-up fluid. Now, however,
even though we know from his last MRI that scar tissue is
making a mess inside the back of Joshua's head, the shunt
makes a way for the CSF that isn't draining properly due to
the build-up of scar tissue to get past the blockage. In the
past, there was no detour for that fluid. Now, though, it's
there, and I think that Joshua's body has achieved a balance
of CSF production & drainage via the shunt that is working
to allow him to live a whole lot longer than anyone ever
though possible. And while that's a huge blessing, a very
good thing as it has meant a lot more time with him, it has
left me wondering what the future will look like. I mean,
everyone thought we would see what had happened
multiple times before happen again ~ scar tissue would
build up & block the flow of CSF, thereby increasing
pressure against his brain, and since no more surgery could
be done to remove the scar tissue & relieve the pressure
inside his head, the compression of Joshua's brain stem
would lead to death by respiratory failure. But now? Now
what would anyone predict? I've asked that question &
been told that Joshua is writing his own book. In other
words, no one knows anymore because he's outlived what
anyone anticipated was possible. I know that Joshua's
condition is still terminal. His brain stem is deteriorating
and that won't stop, but it seems to be a fairly slow process,
which makes me wonder what the future looks like from
here. Is it possible that he could live another year? Six
months? Three? If so, what would that look like as his
symptoms increase? Will there come a point where he's
either snowed all the time or where we can't control his
pain & are forced to admit him to the hospital for the rest of
his life, however long that might be? He's on a downward
decline, but we can't see how long the slide is, so while we
know that at the bottom stands Jesus with His open hands
ready to catch Joshua, we have no idea when he's going to
reach the end. Psychologically & emotionally, it's a hard
truth to face.
I realize that no one knows how many days they have to
spend on Earth and that is why we should make the most of
each day, which we have been doing (and have been SO
thankful for), but I have learned there is a difference
between knowing, theoretically, that you could die any day
because anyone can die at any time and knowing,
definitively, that your child has a medical condition that is
incompatible with a normal lifespan. I am finding that
being told your child is not expected to live 3 months and
then, when he does, being told that maybe you'll get
another summer with him, and when he breezes past that
goalpost, hearing that "it" could be any time but no one
really knows for sure anymore... well... it's brutal. It's a
total mind game. I'm not saying anyone has deliberately
been messing with my family ~ not at all ~ it's just that
when you're told your child is going to die soon, you make
preparations and you do all the memory-making stuff you
can think of and you talk to your other kids about what is
happening and you do all you can to prepare yourself to let
go when you have no other choice. Then it doesn't happen
and you start to wonder if maybe the doctors were
wrong. If maybe, even though your child has this condition
and you've seen the MRIs & intraoperative pictures,
MAYBE he'll actually be okay. And then you watch him
slowly decline and you realize that yes, he IS going to die,
but you don't know how it's going to happen because the
way the doctors predicted it would happen was changed
when a shunt was placed & surprised everyone by keeping
your child alive. It's an emotional roller coaster. Every
single night, I say goodnight to Joshua as though it will be
the last time I get to hear him speak, just in case he dies
before morning. As he continues to decline, I find myself
not wanting to leave him in case "today" is the day. I don't
WANT him to die, but I wish I had some idea of how long
he actually has left because if God were to tell me, "Okay,
Kate, he'll be with you for about 4 more months," I could
actually relax a little bit, which maybe sounds crazy, but it's
how I feel. Instead, I have no idea, so that means it could
happen any day, just as Dr. T told me during our last phone
conversation. As such, the emotional roller coaster
continues, with my heart wanting to imagine a reality
where Joshua lives for years to come while my brain
throws logic & what I can see happening with my baby into
the mix, which paints a completely different picture. It's
painful and awful and if didn't mean Joshua would die, I
would wish it would end.
Please do not misunderstand me. I am NOT saying that I
wish Joshua would just die and get it over with. That's not
my feeling whatsoever!!! I wish he could get better, live
like a typical little boy, grow up, get married, have children
of his own. If there was some way to fix what is wrong
inside his little body, we'd already be fixing it. I'm not
saying I want this to be over because I will never be ready
for it to be over. I will never be ready to spend the rest of
my life without my son in it. I'm simply trying to express
how difficult it is to have a child who has outlived all
predictions for his life expectancy but still has a condition
that is slowly killing him. Never knowing what the day
holds ~ will he wake up at noon or at 6pm, will he have
trouble breathing, will we be able to control his pain &
keep him relatively comfortable ~ is emotionally
exhausting. Not one day goes by where I don't have at least
one of my younger children asking me, "Do you think
Joshua will live until _________ (Christmas, New Year's,
his birthday)?" They are watching him slide downhill, too,
and like me, they wonder when and how it is going to
end. NOT because they WANT Joshua to die ~ (how could
we ever want that?!?!?) ~ but living in limbo is painful for
my entire family in ways that are impossible to describe.
I don't want life with Joshua to end. I just wish I had some
idea how he is going to get to where we can see he's
heading. I thought we had an idea, but we don't. No one
does. There's no literature, no medical journals, no doctor
in the country who can tell me what we can potentially
expect or what signs to look for that would give us an idea
that the end is near. I understand that there is no one other
than God who knows. All I am asking Him now is to not
allow Joshua to suffer. To put a burning desire within
Joshua's doctors' hearts to provide the best possible care for
my little boy. For them (and me) to be creative in thinking
of ways to manage every symptom that arises so that we
might minimize all discomfort or distress. And for peace
when his journey comes to an end. Peace for him, and
comfort for all of us who love him.
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Written December 2, 2012 4:15pm by Kate Parker
Thank you to everyone who prayed for Joshua ~ he woke
up with only a trace of sniffles, feeling good (his version of
good) and happy. His throat isn't sore anymore and he's not
coughing or having runny diapers. I give all glory to God
for this turnaround and thank you for lifting Joshie to God
in prayer!
He is currently decorating sugar cookies with his brother,
Isaac, who is celebrating his 9th birthday today. I am so so
so so happy that all of my kids are feeling well enough to
have fun ~ truly, this is an answer to prayer and I am SO
thankful!
Bless all of you for caring and asking God to protect Joshua
from the effects of this virus. I'm thanking and praising
God for answering those prayers!
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Written December 1, 2012 6:34pm by Kate Parker
Joshua woke up not feeling well. His dad had a cold &
several of the kids have gotten sick ~ some with vomiting,
all with sore throats, stuffy noses and gunky stuff getting
coughed up ~ over the last week. Very unfortunately, it
seems Joshua won't be avoiding this virus.
I had to turn off his feed/fluids for several hours due to him
feeling like he was going to throw up (I've restarted them at
a slow rate). He's needed extra doses of pain medication,
too. He's had some runny diapers, says his throat hurts, and
his nose is getting congested.
Would you please join me in praying that God would
strengthen Joshua to fight off this cold virus and that it
would be mild, never developing into full-blown
misery? Please pray that he does not begin vomiting & that
he will tolerate his fluids & all medications because if he
can't keep those down, I have no choice but to get him
admitted to the hospital, which is not what we want. I'm
not worried or stressed at this point, but since I don't know
how this illness will play out, I am asking for prayers that
Joshua will recover speedily. I really want to see him back
to his normal again.
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Written November 30, 2012 1:18pm by Kate Parker
Joshua's methadone was increased again this past
Monday. It's helping; he's only needing 1-2 breakthrough
doses of oxycodone per day now. It has increased his
sleepiness, but not excessively so, which is great.
He has discovered the joy of "playing" Monopoly. He holds
the dice & it takes him about 30 seconds each time to make
his hands work to let the dice go, but after he does, we
move his pawn (he likes being the car) and then we help
him with whatever he lands on. He LOVES buying
everything he can and he doubly loves getting money from
other players when they land on his properties (we just
hand him the money; it's not like he realizes we've landed
on anything he owns). He has no concept of a monopoly &
prefers to get one property of each color to make a
rainbow. It's delightful to play with him. :)
We've had some sweet-but-sad conversations lately, too. A
few nights ago, Joshua and I were getting ready to go to
sleep and he asked what is wrong with Beppy (his
pronunciation of Bethany). I told him that she has owies
and he told me to give her medicine. I explained that I don't
have medicine to give her, so he offered to share his, but I
told him I could not give his medicine to his sister because
it's his, not hers. So then he said, "If the hospital people
won't help her, you should call Dr. W. She helped me. She
is a good doctor." He paused, then added, "The other doctor
who works with Dr. W is good, too." I supplied the name Jenny - and he agreed, saying, "Yeah, Jenny is a good
doctor, too. Dr. W will help Beppy. I think you should call
her." I thought Joshua's concern for his baby sister and his
suggestion that I call his neurosurgeon because she can
help was really sweet. I didn't want to forget the
conversation, so I rolled over, grabbed my iPod from the
table beside our bed & quickly typed out what Joshua had
said.
After I'd written it and was snuggled up next to my boy
again, he asked what I had been doing with my iPod. I told
him I'd typed out what he had said about Dr. W and he said,
very quietly, "Yeah, her is a good doctor. Her couldn't fix
my head, but her did her best. It used to hurt REALLY
badly, but then Dr. W helped and then my head hurt only a
little. Now it hurts super badly again, but her can't help
anymore. Maybe her can help Beppy, instead."
Talk about a knife in the heart. I did not cry, though I
wanted to. Instead, I hugged Joshua and told him Dr. T is
switching his meds around to try and help make his head
not hurt so much. Joshua got a bit excited and asked, "Can
he make it not hurt AT ALL?" I couldn't destroy his spark
of hope, so I answered that I knew Dr. T would try.. Joshua
said, with great enthusiasm, "I hope it works!"
It tears bits of my heart out to hear Joshua talk about how
badly his head hurts and how hopeful he is that someone
out there can fix it even though he knows no one can really
do anything anymore. It's awful. I'm thankful that the
increases in his methadone dosages are helping more now,
but nothing brings Joshua's pain level to lower than
"medium" (his description). Since one of my biggest goals
is to keep my little boy comfortable, knowing that
everyone's best effort can only keep the pain at a tolerable
level for him makes me sad. Still, it's better than it *could*
be ~ despite his pain, Joshua still smiles, giggles & finds
enjoyment in each day ~ and I praise God for that.
Another conversation we had took place last night when
Joshua seemed to need some assurance about heaven. He
asked me if we all would be in heaven, too, and I told him,
"Yep! We'll all be there together!" He asked, "And I won't
be alone?" I hugged him & reminded him that he's never
gone anywhere alone, so why would he think going to
heaven would be any different? He nodded, understanding,
but still seemed a bit anxious to me, so I squeezed him,
pulling him closer to me, and said, "Joshie, going into
heaven is like when we walk into our house. Can we all
walk in at the same time or would we get stuck in the
door?" He giggled & said, "We get sticked!" I agreed,
then went on, saying, "Okay, so going into heaven will be
like walking into the house. We can each go in, but it will
be at different times since we can't all go in at the same
time. You get to go in first, and then the rest of us will
come in after you, one at a time. And just like when you
walk into our house first, you aren't alone ~ we're all right
behind you, right? Well, it will be the same way going into
heaven, and then, when we're all together, we'll go to the
place Jesus has prepared just for our family and it will be so
great!" Joshua liked that idea and I could feel him relax in
my arms. He told me, "And no one will hurt ever again! I
won't have a port or shunt or anything!" I agreed, saying,
"That's right! You'll be able to run & play in Heaven's
playgrounds and you're going to have SUCH a good
time!" He giggled, said, "Yeah, and I will ride bicycles." I
hugged him close again and agreed that yes, he would
definitely be able to ride a bike. Then, satisfied with our
conversation & having had his fears allayed, Joshua
snuggled under the covers and fell asleep.
I know that what I told him may not be 100% accurate
since I have no way of knowing how things work in heaven
(and yeah, I'm sure the gates are wide enough to allow
many to enter at once, but I was going for an analogy that
Joshua would understand), but I think that as long as I am
not deliberately lying to him, it's okay, and God
understands my heart & intention behind what I tell Joshua
(to make sure he's not frightened of leaving us & going to
heaven). Once he's in heaven, even if my explanations
were completely wrong, it won't matter anymore. Joshua
will have the mind of Christ and his understanding of
things will be *so* much more than what my earthly brain
can comprehend. He'll know why I said the things I did
and I think he'll appreciate that I did what I could to
comfort him. At least, I hope that's how it works out.
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Written November 22, 2012 1:33am by Kate Parker
On Monday, I was anticipating hearing from Dr. S,
Joshua's pediatrician, after she had a scheduled phone
conference with Dr. T, Joshua's palliative care doctor. The
morning and afternoon were filled with medical things for
Bethany, but I still half-expected my cell phone to ring and
to see Dr. S's number come up. It never happened, though.
When Charley & I finally arrived home, I called Dr. T &
left a voicemail, asking him what had been decided during
his & Dr. S's conversation. Less than 5 minutes later, Dr. T
called back & surprised me with the news that Dr. S had
not yet called him and because she was not in her office on
Mondays, he had no way to contact her. Since he had me
on the line, though, he was happy to discuss things with
me, so we had a good talk about all things Joshua and made
plans for where we will go from here.
Dr. T began our conversation telling me he feels confident
that we can make changes to Joshua's meds on an
outpatient basis, which was fantastic news to hear. He said
he will increase Joshua's methadone doses while keeping
the base doses of oxycodone the same for now. Once
we've got his level of methadone high enough that we aren't
needing to give any breakthrough doses of oxycodone, Dr.
T will begin lowering the amount of oxycodone Joshua gets
while simultaneously increasing methadone. We'll evaluate
how things are going each week and make adjustments as
needed. He said that what is happening with Joshua
(increasing apnea during the day, but not so much at night)
has him completely confounded because it's the opposite of
what he anticipated happening. He said that Joshua is
absolutely writing his own book & that while he still
believes Joshua will one day experience an apneic episode
that he does not wake up from and that it could happen at
any time, he can't predict with any certainty when that will
be because by all accounts, it should have already
happened. He confirmed that we'll continue to see decline
but had no predictions for what else we may see since there
is not a lot of medical literature available on the
deterioration of a child's brain stem. He also flat-out told
me that he is not going to bail on Joshua, he is not going to
pass Joshua's care over to a different palliative care
physician, and he will continue to be available to Dr. S for
consultation about Joshua for the duration of Joshua's
life. He said there was no reason for me to worry about
losing him as a member of Joshua's team and he was sorry
it had been brought up to me as a possibility because from
his perspective, it wasn't. Obviously, that came as a huge
relief to me. Our conversation ended with me agreeing to
page Dr. T on Wednesday when I was in Portland with
Bethany & Joshua so that he could do an informal
assessment of Joshua and offering to contact Dr. S's nurse
so that she (the nurse) could get Dr. S to call him (Dr. T).
Later in the day, Dr. S's nurse called me to let me know that
Dr. S had talked with Dr. T and they had a new dosing
schedule for Joshua's methadone (which I had known
would be coming). She gave me the new numbers & then
said Dr. S wanted to now talk with me, so I was briefly put
on hold while Dr. S got on the line. Dr. S basically
reiterated what Dr. T had told me earlier in the day and
asked me to call her in a week to let her know how Joshua
was doing with the new dosages. We discussed Joshua's
latest symptoms (the increased memory loss, worsening
speech, increasing fatigue & apnea) and she was
sympathetic & understandably sad about where we're
currently at. We agreed that keeping Joshua comfortable &
at home is our primary goal. It was reassuring to know that
both of Joshua's doctors are still on the same page as
Charley & me with regards to what we want for our little
man, especially when there had recently been some
questions about that.
Monday evening was scary. Joshua was trying to drink
some juice & choked, which led to a bunch of
coughing. Immediately after recovering, he had a big
apnea episode where, for the first time ever, he was unable
to *make* himself breathe. That led to him panicking as he
struggled to get air. His eyes were terrified, he broke out in
a cold sweat that drenched his head & face & he collapsed
against me as his face took on a dark purplish-gray hue.
When he was able to breathe again, he struggled to not cry
because he had been so scared. The incident lasted
probably only about a minute, but felt like hours. All I
could do was hold Joshua and rub his back and quietly
reassure him over & over, "It's okay.... you're okay," even
though I knew it wasn't & he wasn't. There was nothing
else I could do.
It was awful to watch the wild-eyed look of fear in my little
boy's eyes and his hands reaching out and grasping at
nothing as he realized he could not breathe. That night, I
asked the Lord to please make Joshua's death a painless one
with NO fear. I begged, "Please, God... when it's time, just
let him go to sleep & not wake again... please don't let him
be aware that he can't breathe & can't *make* himself
breathe. Please, God, don't let him struggle & be scared like
he was tonight ever again. Spare my heart from having to
see Joshua scared & me unable to help him." It's the prayer
I hope God will answer.
The next morning, I woke feeling like I was going to cry,
which was an unusual experience for me. I could not shake
the memory of the night before. No matter what I tried in
an attempt to distract myself, I could literally feel myself
losing the battle, so I called a sister in Christ who has been
a steady anchor through every storm these past 2 years have
held and poured out my heart to her. I don't really even
remember what I said, though I do know I rambled. I don't
know how much she understood through my tears. All I
know is that she gifted me with several hours of her time
and when I hung up the phone, I felt as though I had
dropped 100 pounds of pain & could face another day.
Joshua slept for most of Tuesday, most likely a direct result
of our increasing his methadone. When he woke just
before dinnertime, he was dopey & moving/talking very
slowly. I asked if he was okay & he answered, "I'm really
tired." I explained that we had increased one of his
medicines and he would be tired for a few days, but then
his body would get used to the medicine and he'd feel better
again. Did I know for certain that would happen? Nope. I
just opted for the power of positive suggestion, figuring
that if I told Joshua he could expect to feel better, maybe he
would, and knowing that if he didn't feel better, he most
likely would not remember me telling him he would.
Due to a big storm that made driving conditions dicey &
Bethany developing an infection that landed her in the
hospital, I had to cancel her appointments in Portland,
which means I did not get to see Dr. T today. It's all right,
though; I'll check in with him when I take Bethany up in 3
weeks.
Last night, Joshua had one big apnea episode while he slept
(heart rate 34, oxygen 69%). He is having a lot more apnea
when he's awake and upright, as well as more episodes
where he "spaces out" (best way to describe it). He has lost
ground in the past few weeks, which makes us all suspect
things in his brain are getting closer to that place where
he'll not be able to recover. I do not believe he is within
days of dying and I don't want to give that impression to
others. I am sincerely hopeful that we will have many
more months with Joshua in our midst. Even though he's
not doing "great," he is still "okay". He's not having nonstop apnea episodes and he still recovers from each bout
without external stimulation from us. He still plays
Minecraft on the computer. He is still living & smiling &
finding enjoyment in the things he can do. As long as we
can keep Joshua comfortable & happy, I will pray that God
allows him to stay with us.
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Written November 21, 2012 1:01am by Kate Parker
I've only got a few minutes to write right now, but wanted
to ask for prayers for both Joshua & Bethany. Joshua has
had a few difficult days and his methadone doses were
increased yesterday, which has resulted in him having an
"off" day today (more sleepiness, more stupor, less energy,
more comments of being tired, more apnea). He had a scary
episode last night while awake (it was about 10pm) of not
breathing & not being able to *make* himself breathe,
which terrified him (and me). That episode came on the
heels of a couple challenging conversations with doctors
that had taken place earlier in the day and 6 hours of doctor
appointments + lab visits + attempts at obtaining meds and
I went to bed feeling incredibly sad & overwhelmed. I
woke up on the verge of tears, gave in & called a friend and
had a complete meltdown crying jag as I talked to her about
everything, then felt a bit better but still had a hard time
getting my brain engaged for the day, and then Bethany
wound up getting admitted to the hospital tonight. I'm so
tired & so sad & just really, really, really worn out. I'm
worried about Joshua, who is not doing well (I'm not saying
I think he's on the verge of dying... just that he's struggling
more & that is concerning & sad). I've wanted to come
here & update on what is going on, but have not had the
energy when I eventually find the time, so it hasn't gotten
done. I am going to try to write a full update tomorrow
about the phone conference Dr. T & Dr. S had yesterday
and the other things that are happening, not only so I don't
leave you hanging & wondering what is going on, but also
so I get the important stuff documented for future
reference.
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Written November 16, 2012 4:42pm by Kate Parker
I received word today that Dr. T (palliative care) and Dr. S
(ped) will be having a phone conference on Monday to
determine a plan for Joshua. I don't get to be part of the
conversation, but know that I retain final veto power, so if
whatever they come up with is something Charley & I don't
want to do, I'll let the doctors know that nope, it isn't
happening.
I'm nervous. I don't want to lose Dr. T. He told me he
would always be available to Dr. S, but then Dr. S said she
thought it would be better to get Joshua switched over to
someone else before Dr. T leaves for his new job and while
yeah, that's logical, I don't know anyone else in the
palliative care department well enough to feel comfortable
letting them take over Joshua's treatment planning. I just
want some stability through the end of Joshua's life. Is that
too much to wish for? I also don't really want to have to
put him in the hospital. No matter how much anyone cares
about him there, they cannot get breakthrough pain
medication as quickly as I can at home, which means
Joshua lays there hurting & waiting for a nurse to have time
to take care of him. I hate that. I sit there with my supply
of oxycodone but am helpless to do anything for my child
because a parent can't give their child pain medication in
the hospital (or... at least... they're not supposed to).
There are other concerns that I have, but I suppose that I
should wait to hear what Dr. T and Dr. S decide before
getting worked up about anything. I really do hope that
they opt to not rock the boat while Joshua is comfortable
and stable (insofar as pain management goes). I would
understand their logic in wanting to get things switched
around with his medications before his pain gets out of
control again, but everything in me wants to wait until it's
necessary since no one knows for sure that trying to flip
Joshua's meds will be successful and no one can say with
any certainty that it won't leave him sleeping more and
interacting less, so I am not eager to change things.
Joshua had his port flushed today and handled it really
well. On the way home, I felt prompted to stop by the
therapy center where Joshua & 5 of my other kids used to
receive occupational and speech therapy. In a very Godordained "coincidence," the therapy team was sitting down
for a late lunch, as today they are preparing for an Open
House at the center and no one was seeing patients, which
meant I was able to carry Joshua back and say "hi" to
everyone. It was lovely to be able to give & receive hugs
from the ladies who have played such a special role in so
many of my kids' lives and for them to be able to see
Joshua again. My sweet boy was happy & smiley, telling
everyone, "Hi," and even saying, "Sure," when I asked if
his OT could give him a hug. She commented that he
looked tired & he'd probably fall asleep on the way
home. I think I surprised her a bit when I replied, "No, this
is Joshua awake. This is what he looks like now. He's not
going to fall asleep." I heard a few murmurs from some of
the other therapists when I said that. Not in a negative way
~ everyone there is just as sweet as they can be and they
adore Joshua ~ but maybe in a sad way. I honestly don't
know what they were thinking; as true professionals, they
kept their 'game faces' on. Anyway, though our visit was
short, it truly made my day to be able to see everyone
again. It's amazing what some friendly smiles & hugs can
do to boost my morale these days. Just knowing that even
though he isn't able to go to therapy anymore, Joshua still
matters to everyone at the therapy center really touched my
heart. It means so much to know that people care.
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Written November 14, 2012 10:23pm by Kate Parker
A few weeks ago, I received an email from someone I've
never heard from before. She wrote that she had had a
dream about Joshua and while she had never emailed a
stranger before, she'd also never had a dream about a child
she'd never met and she could not shake the feeling that she
was supposed to share it with me. After hearing about the
dream, I was *so* happy that she had taken the time to
write to me.
What she told me was she was standing near a very pretty
playground with sky blue slides and tunnels. A little girl
with dark blond hair done up in pigtails was running all
around the playground. A little boy popped his head out of
a tunnel and laughed at her. He said, "I hid so well, I knew
you would never find me!" He climbed out of the tunnel,
and in the dream she thought, "Wow, that's Joshua!" She
didn't think he would be so tall and she said he had the
prettiest eyes. He said, "We have to go. My Mommy's
almost here." He took her hand, and they ran towards the
woman. As they passed by, he was laughing and he said,
"Keep praying for me all the time."
When I read her recounting of the dream, it made me cry
(not in a bad way). I wondered if the little girl with blond
hair done up in pigtails was Bethany. And I was reminded
of a friend telling me about a dream she'd been told about
after her daughter died where the person who had the
dream said they saw my friend's little girl playing on a
playground with a blue slide. Coincidence about the color
of the slide? Perhaps. But maybe these ladies were given a
glimpse of heaven and then the Holy Spirit prompted them
to email my friend and me to tell us about it, knowing that
it would bring us comfort to think about our children being
in heaven & playing with other kids. I don't know, but
instead of analyzing it, I'm simply accepting what I was
told and feeling thankful for such a sweet gift in the form of
an email.
Tonight, the kids & I roasted marshmallows in our wood
stove & made s'mores. Joshua sat on the hearth & toasted
marshmallow after marshmallow. He only ate a couple
bites of one s'more, but he thoroughly enjoyed the process
of making them. I was too busy with laying out graham
crackers with Hershey squares on them and then helping
each kiddo smoosh their marshmallow in-between to get
photos, unfortunately, but we had a lot of fun. We all are
happier when Joshua is in our midst and able to enjoy the
spontaneous, silly times. As often as not, he is sleeping or
too tired to participate, which made his ability to enjoy the
activity with everyone tonight doubly special.
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Written November 12, 2012 8:35pm by Kate Parker
Anyone who knows me in real life knows I'm a chatty
person. Words generally come rather easily to me & I
enjoy conversation. As of late, however, I've been having
trouble finding words that can express the feelings &
thoughts that swirl in my brain. It's not that there's nothing
going on or nothing to be said; I simply don't know how to
say it, which keeps me uncharacteristically quiet.
Joshua continues to be comfortable with regards to pain
and his apnea episodes are still primarily occurring during
the day when he's upright, which makes logical sense to
me. He continues to display lapses in memory ~ both short
and long-term ~ but I can't figure out any pattern to what he
remembers or forgets. For the most part, he is not upset by
what he no longer remembers. Whether that is due to some
deterioration that affected his emotions in that area or
because we are doing a better job of responding in a
nonchalant manner when he doesn't remember something, I
don't know, but I'm relieved that he isn't crying over lost
memories. That's my job, not his.
You might think it's great that Joshua doesn't remember
every scary thing he's gone through (he still remembers
some things, but not all), but honestly, try to imagine what
it feels like to have someone you love not remember a huge
amount of "stuff" that you have experienced together over
the course of their life and maybe you'll understand why I
don't feel like it's such a great thing that Joshua is forgetting
so much. Yes, he's been through a lot of painful, scary
things, but those hospitalizations and surgeries and doctor
appointments and trips up to Portland & back make up a
large chunk of Joshua's life and, consequently, a big chunk
of my memories with him. Knowing that he no longer
shares those memories with me hurts my heart. There's so
much that just Adam, Joshua & I shared over the years...
losing Joshua's voice in recollecting the fun times we've
had over the years is difficult. A vital piece of the puzzle is
missing & there's no way to get it back, which means our
puzzle will never be complete again. Sigh... I don't think
I'm doing a good job of putting this into words... suffice to
say that every reminder of the continued downward slide
Joshua is on is painful to an even larger degree than its
been. I don't know why. I really don't. It just IS.
A few days ago, Joshua was napping on my lap. He woke
up & asked, "Do we have kickin' (chicken)?" I told him
that I didn't think we did and he told me he wanted
chicken. Specifically, he wanted a chicken burger. I called
Charley at work and asked if he could finagle making what
his son wanted (it's not something his store typically
makes). He said he would & that he'd be home in about 15
minutes. True to his word, he walked in the door with a
container holding 2 mini chicken burgers (each burger was
a chicken strip cut in half with a piece of cheese on a slider
bun) and a handful of french fries. I chirped, "Joshie,
look! Daddy brought your food!" Joshua gave me a
confused expression as he asked, "What food?" "Your
chicken burger, Baby," I reminded him, trying to spark his
memory. Again, a confused, "Chicken burger?" Charley
handed me the container to give Joshua and I showed him
the contents. Joshua pushed it away, saying, "I'm not
hungry for chicken. Can we save it?" (He asks to save
*everything*) I assured him we could & handed the
container back to Charley, who took it to the fridge. Both
of us were sad and a bit shocked that Joshua could not
remember a conversation from 20 minutes earlier. We
didn't hear one word about the chicken again until two
DAYS later, when Joshua asked, out of the blue, "Can I
have my chicken burger?" I immediately told him, "Yes,"
and got it for him, but I felt completely puzzled by how
Joshua couldn't remember asking for the chicken the day he
asked for it, but he could remember it two days later. Our
days now are filled with random memory lapses like
that. It's not a big deal, practically-speaking, and we roll
with it and don't make a fuss about it, but emotionally, it
stings every time.
Today marks one year since Joshua's last surgery. On
November 12th last year, the ventriculostomy (externalized
shunt with ICP monitor he'd had placed 5 days previously
after his 6th chiari decompression, which was done on
November 3rd, failed to bring his pain level to a level we
could work with) was converted to an internal VP shunt. It
took another almost-3 weeks to work out his pain
medication dosages sufficiently enough to allow us to take
him home, but those 3 surgeries & month-long stay in the
hospital, which were intended to get him through the
holidays & maybe even to his 6th birthday, have given us
another full year with Joshua. If it weren't for the fact that
he continues to decline & lose skills & cognitive function, I
would entertain the thought that maybe Joshua could live
for many more years. It seems as though the VP shunt is
draining enough fluid to compensate for what the scar
tissue at the back of Joshua's head is blocking, which
appears to be what has enabled him to survive so much
longer than his doctors thought possible. Because of that, it
makes me wonder if he might continue to surprise
everyone. I don't honestly know if it's possible ~ experts
would probably caution me that it's not probable ~ but
whenever I contemplate these things, I am reminded that no
one really KNOWS with any actual certainty how long
Joshua could live since he's one of a kind with his
particular conglomeration of medical conditions. Yes, I
understand that no longer having the option of doing
surgery will absolutely lead to Joshua's death, but since he's
lived a lot longer than Dr. W thought possible after the last
series of surgeries, I can't help but hope that maybe,
perhaps, there's a chance we'll get to celebrate Joshua's 7th
birthday (next March) after all. As long as I don't focus too
much on the things we see from day to day, it seems
possible. I guess it all depends on how slowly (or quickly)
things progress from here and only God knows the day that
He will heal Joshua forever.
I'm so tired all of the time. Living in limbo, waiting for a
specific awful event to happen, is tough and sometimes I
feel like I want this to just be over with already so we can
move on to the next thing, but in 100% contradiction to that
emotion is the equally-strong feeling that I do NOT want
this limbo to end because I have absolutely no desire to
experience the next thing, which is life without Joshua
physically present. Yes, I realize it sounds impossible to
feel two completely opposite things simultaneously, but it's
where I'm at. I know it sounds crazy. Maybe it is. Or
maybe it's not, but I am. That would explain so much,
huh? <small grin>
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Written November 7, 2012 11:42pm by Kate Parker
Joshua is tired all of the time now. Even when he's feeling
good, he's tired & it physically shows. Dark circles under
his eyes, poor coloring, not a lot of energy to do
activities. He frequently stops to catch his breath and/or
yawn. He'll ask periodically throughout the day if it's time
to go to bed and when I tell him he can lay down for a rest
if he wants, he will usually say he doesn't want to go to bed
yet (despite having *just* asked if it's time), but then he'll
lay in my lap for awhile as I rock him in the recliner or he'll
cuddle under a blanket on the couch. After a short rest,
he'll take a deep breath, struggle into a sitting position (if
I'm holding him, I help ~ his spinal cord is so stuck in scar
tissue now that he can't bend his back & sitting up/standing
or laying down from a standing position is very difficult for
him to do) and then resume playing on his iPad or watching
a movie or playing a computer game.
I suspect this increasing fatigue is due to condition
progression, but I don't know with certainty. I don't know
what else it would be caused by, though, and I don't know
any way to improve the situation. We just let Joshua sleep
when he wants to, for as long as he wants to. About every
third day, he sleeps for 20 hours or more. The two days inbetween, he wakes after 12-14 hours of sleep. The long
sleep days always find Megan, Adam & me telling each
other things like, "Well, he DID go outside for 15 minutes
yesterday," or "I guess hanging ornaments on the tree really
wore him out." Then we look at each other and realize how
absolutely CRAZY we sound. Yeah, hanging 6 ornaments
on a tree so completely exhausts a 6.5 year old that they
will sleep for 21 hours. That's normal, right? <weak
grin> I think we try to come up with excuses to make it
seem not so depressing. It's our feeble attempt to not be
sad about what we see happening to our Joshie.
I remain extremely thankful that Joshua is not forgetting
who his family members are. He forgets things throughout
the day & will ask if we are going to do XYZ and I'll
remind him, "Sweetie, we did that already." He always
responds, "Oh.... really?" in a surprised tone, like he
wonders how he forgot that so quickly. We've decided that
we can deal with his memory loss so long as it doesn't
involve him forgetting us, his family. It is my prayer that
he never loses those memories because I honestly don't
think my heart could stand having my little boy not know
who we are anymore. I know it'd be easy to think, "Oh,
God won't let that happen!" but think about the thousands
of people who develop dementia or Alzheimer's. They
forget their family members' names.... why should I think it
couldn't possibly happen to Joshua, especially when he's
forgetting so many other things? I can't assume it won't, so
I simply pray that it doesn't.

Written November 5, 2012 10:03pm by Kate Parker
Joshua officially freaked both Adam & me out last night.
He asked if we could go for a walk. It was dark & cold
outside, but he still begged us to take him out, so we
bundled him up in his wheelchair & left. He wasn't
talkative at all and after we'd been out for 10 minutes or so,
he asked if we could go home, so we headed back. As I
pushed his chair, I ruffled the top of Joshua's head & told
him I loved him & he told me he loved me forever & then,
in the next minute (literally), he was asleep. That was
unusual & unnerving, and Adam kept his hand on either
Joshua's chest or his head as we walked the rest of the way
home. When we got home & got Joshua into the house,
both Adam & I bent over Joshua to see if he was still
breathing because his eyes were half-open and his jaw was
hanging open. We stared intently, waiting, then Joshua
noisily inhaled and Adam & I looked at each other,
realizing that without saying anything, we'd both wondered
the same thing ~~ had Joshua wanted us to take him out for
a walk to say goodbye? I know it probably sounds
melodramatic and perhaps it is, but I think it is a good
example of how everyone in my family is worried about
Joshua these days. Despite being generally cheerful, he
continues to lose skills & memories & the downward spiral
is impossible for us to ignore completely, though we
generally try to not dwell on it from hour to hour.
Our mini-Christmas/Thanksgiving celebration yesterday
was lovely. We had our traditional Christmas breakfast,
opened gifts, played with new toys & watched new movies,
then ate a traditional Thanksgiving dinner & finished off
the evening singing Happy Birthday to Megan & cheering
as she blew out candles on her birthday cake. Really, the
day could not have gone any more perfectly. Lots of
pictures were taken, probably a dozen videos, and many
more memories were made. It was everything I'd hoped the
day would be. So what is the problem? Nothing, really,
except for the tinge of sadness that everyone felt &
commented on at some point during the day. After all of the
gifts were opened & everything was cleaned up & the kids
were all involved with activities, I went upstairs to sit on
the bed I share with Joshua and I had a short cry. If you'd
asked me what was wrong, specifically, at that very
moment, I could not have put my finger on it. Sometimes a
really happy & fun day can trigger the deepest sadness for
me. Sarah asked me in the early evening if I thought Joshua
would still be here for the real Christmas and I hugged her
as I answered honestly, "I don't know. I hope so." She told
me that lately, she's felt like crying almost every night
when she goes to bed. She's not the only one. This being in
limbo is brutal... knowing that something awful is coming
but not knowing when, and wanting the interminable
waiting to end but NOT at all actually wanting that because
of what that would mean. It's the hardest thing I've ever
been through so far in my life. It's definitely the hardest
thing my children have been through, too, and I wish I
could save them from having to experience it but
obviously, I can't. That is a whole other level of stress,
actually... trying to help my children manage their sadness
& worry & fears while managing my own. And just when I
think I've got a handle on it & we're doing all right,
something big changes with Joshua & everyone has a minipanic attack and I am reminded yet again that we're all just
barely hanging on.
One of our doctors in Portland is taking a job with an HMO
and even though they are willing to continue advising our
local doctor about Joshua, our local doctor is thinking that
maybe it would be better to admit Joshua to the hospital (in
Portland) to switch over some of his medications and get a
new doctor there brought up-to-speed on my little guy so
the new doctor could advise the local doctor once our
current doctor goes to his new job. I am having very mixed
emotions about this potential change. I trust our current
Portland doctor implicitly. I feel as though he understands
Joshua & we share the same goals. Trying to build rapport
& trust with a new doctor in a matter of days when that
doctor would be playing a major role in Joshua's care is
unnerving to me to contemplate since I don't know if they
would share my goals & vision for my son and if they
didn't, I'd be stuck between a very hard place & an equallyhard rock. If I'm not given any other option, I'll do it, but
it's definitely not my first choice. I'd much rather stick with
the team of doctors we've got & not make significant
changes to the lineup at this stage of the game. Again, I
don't know how much of a voice I get to have in this. I've
shared my thoughts with the Portland doctor via email. I've
briefly discussed it with the local doctor. Thus far, nothing
has been definitively planned as far as admitting Joshua to
the hospital ~ at least, nothing I've been told about ~ so I'm
hoping that the local doctor has dropped the idea. I don't
WANT Joshua in the hospital. He gives up when he's
there. He loses any zest for life & becomes listless and
depressed, which is very frightening to witness. If it's
necessary to put him in the hospital to switch over
medications, then yeah, okay, we'll do it & endeavor to
make it as short a stay as possible. But God knows I am
hoping we don't have to do it.
With the care of a chronically-ill, medically-fragile child
(or two, as the case is for my family) comes expected
stresses, as well as unexpected challenges. Relationships
get strained. Some friendships don't survive. Many
marriages don't, either. I've lost friends over the past two
years, some who I honestly thought were lifelong, alwaysgonna-be-there-no-matter-what people. My marriage is
also hanging by a thread. I want to be able to say that
Charley & I will make it through everything & emerge
stronger than before, but I honestly don't know if that is
true (please do not offer advice about this right now;
thanks). And, as many of you have figured out & a few
have asked about, one of the girls my family adopted is
conspicuously absent. I am not going to get into the nitty
gritty details simply because I have enough going on
without being labeled selfish & incapable of loving an
orphan & all the other hateful things that people (typically
in the adoption community) spout off to mothers who make
choices they disagree with, but I will share that at the
recommendation of our pediatrician, Hannah is in longterm respite care where she can receive the therapy &
behavioral intervention that she needs & our intention is to
let the family that has her adopt her from us. That is why I
claim 8 children, not 9. If you think I suck for giving up
one of my adopted kids, keep it to yourself. Any negative
comment will be deleted by a friend who will be
moderating comments for me in order to ensure I don't
have to read any nastiness. There are very few people
reading this journal who have a true understanding of what
we were living with before putting Hannah in respite care,
but those who do understand completely support our
decision. If you want to throw stones, please drive to your
nearest river & have at it, but leave me alone. Thanks.
I am tired. I want Joshua to get better, not worse. I want
God to heal all of the dying children rather than believe that
it's for something good that He is working out as part of
His plan. I realize I can't fathom the knowledge of God and
yes, I do trust that His ways are better than mine, but just
like a petulant child sometimes stomps their foot & says, "I
don't LIKE this!" so, too, do I frown up at God sometimes
& tell Him that I think all of this sucks. It's hard to make
sense of the senseless ~ or what seems senseless from my
limited perspective.
I don't have any idea how much longer Joshua will
live. When he's good, he's good & I can't fathom him
dying any time soon. When he's struggling, it's hard to
believe he'll be with us at the end of the year. But, as my
friend who was here on Saturday reminded me, even when
Joshua is "good", he still looks bad. His coloring is either
white, gray or purplish-blue. He gets dark purple circles
under his eyes if he is at all active (and "active" does not
mean being busy like a typical 6 year old). He has to stop
what he's doing to catch his breath, which is audible most
of the time. He zones out during apnea episodes, which are
more frequent when he's upright & awake than when he's
asleep. Even when he's what I would call "good," he isn't
really GOOD; he's just better than when he's what I would
qualify as "bad". My friend's comments & tears reminded
me of that.
So, overall, I guess I would say that things are status
quo. I'm thankful & grateful that we were able to have our
celebration day yesterday and that it went so wonderfully
well. Bethany had spent the day/night in the hospital the
day prior (the 2nd to the 3rd) after a medication problem,
so we had wondered if there would be a delay in our
plans. It was a blessing to have no other mishaps occur and
to be able to spend the day as a family, celebrating the
major holidays of the winter together. The best gift of all
was Joshua's enjoyment of the day and watching him
interact happily with his siblings. I hope that my kids will
always remember the day with smiles. I know I will
always cherish the memories that we made & I will forever
thank Megan for choosing to celebrate her 21st birthday in
such a loving, giving, joyful way.
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Written November 2, 2012 11:04pm by Kate Parker
Please pray for Emerson, a beautiful 6 year old little girl
who has had 2 multi-organ transplants and is fighting for
her life in the hospital right now. Her mother's latest
update on Facebook (public page:
http://www.facebook.com/groups/45841826303/ ) is
heartbreaking.
Another precious little girl whose life I have followed for
years is Ashley Kate. She, too, is a transplant patient and
she, too, is very sick right now. Her mom blogs at
http://ashleyadamsjournal.blogspot.com/ .
My heart is so sad tonight. There's much I wanted to write
tonight about Joshua, but asking for prayer for these two
girls outweighs anything else. Please, when you are
thinking about Joshua, would you add Emerson & Ashley
Kate to your prayers? I know God is in the midst of each
situation, but at times like this, I sure wish I understood His
plans better because it makes no sense to me that so many
little kids are suffering so tremendously.
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Written November 1, 2012 1:00am by Kate Parker
Super-short note just to
show you Joshua's costume from tonight. We don't
typically "do" Halloween, but we decided last night to go
out if Joshie was up for it. Emily & I went to Wal*Mart to
see what kind of costume ideas we could come up
with. While walking around, I decided I'd make David,
Sarah & Isaac dice because they could wear their regular
warm clothes & coats and all they'd need were cardboard
boxes painted white with black dots on them & holes for
their head & arms. Easy peasy. For Joshua, though, I was
stumped. We thought about making his wheelchair into
something like a boat or a train engine, but time was not on
our side & Joshua doesn't sit upright in his chair ~ he's
tilted backward. Then I saw glow sticks and the idea
popped into my head that I could cover Joshua in a black
fleece blanket and use glow sticks to make a stick person
riding in a lit-up wheelchair.
It took Megan, Emily & me about an hour to get Joshua's
chair all decked out & then to get him situated in it & the
glowing stick person arranged, but the results were
*spectacular*! He looked amazing in the dark and
everywhere we went, we heard "oohs" and "ahhhs" and
"Mom! Dad! LOOK at THAT! AWESOME!" Joshua
kept smiling & saying, "I look good!" At one point, a man
asked if he could take a picture (without a flash, so there
was no way to identify Joshie) because, as he put it, "That
is the coolest thing I've seen all night!" It was so wonderful
for Joshua to get stared at for all the right reasons for
once. Instead of kids staring at him and wondering why he
is in a wheelchair, they were admiring his lit-up
costume. He loved it, as did his young siblings (who
looked fantastic, too). After being out for about an hour,
we went to Charley's work so that Daddy could see how
cute his kids looked. We had a bite to eat & then headed
home. Honestly, the time spent out with Joshua tonight
was precious & I am so thankful that he was able to rally
enough to enjoy himself. He'd been so tired & worn out
while we were getting him ready to go that I hadn't been
sure it was a good idea to take him out at all. But he did it
& he had fun. I am happy that David, Sarah & Isaac got
this night of making special memories with their baby
brother. It was perfect.
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
Written October 31, 2012 5:01pm by Kate Parker
Today is an odd day. I'm finishing up Halloween costumes
and we're decorating a Christmas tree in anticipation of our
mini-Christmas celebration on Sunday. We're adding in
Thanksgiving, as well, with plans to have a traditional meal
on Sunday afternoon. Oh yeah, and Megan's 21st
birthday. Can't forget what started this whole "Holidays
Wrapped Up Together" ball rolling! <grin> Hopefully,
everyone will be feeling good & it will be a really
wonderful time.
Joshua continues to have loss of memory. He doesn't
always remember something from hours earlier, much less
things from days or months ago. Everyone is getting good
about calmly repeating ourselves or reminding him about
things without pointing out that he's forgotten the details
because it upsets him when he realizes that he's having
trouble remembering things. As long as we act like it's no
big deal, he handles it better. The trick is to not let a flash
of dismay or sadness cross our faces when Joshua says, "I
don't know," or gives a blank expression in response to a
question or comment that would typically spark a
conversation. It's difficult having him aware that he's
forgetting things; it would be easier (I think) if he was not
bothered by his memory loss. It's painful for everyone
involved.
Dr.'s T & S are trying to get a plan hashed out to change
some of Joshua's medications. Dr. S thinks Joshua will
need to be admitted up in Portland so Dr. T can oversee
things, but she'll be chatting with him to hammer out the
details. If we have to take Joshua up north, it'll probably be
in the next couple of weeks (that's what Dr. S told me
today, anyhow). I am in no rush to put Joshua in a hospital
again & don't really want to do it unless I can secure a
couple assurances from the doctors ahead of time, but I'm
waiting to hear what they come up with before laying out
my requests. I have an (irrational) fear that if we put
Joshua in a hospital, we'll never get him out again, so I'm
fighting against that right now, too.
Anyway, I need to go finish the kids' costumes ~ I've been
working on & off while other things were going on ~ so I'll
wrap this up. I know I didn't give as many details as I
normally do & that is only because there are a few things
going on behind the scenes that I can't talk about yet. I
wanted to touch base, though, and let you know that Joshua
is okay and doing about as well as he can, considering the
circumstances.
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Written October 25, 2012 11:26pm by Kate Parker
Two entries in one day. Unusual, I know, but something
happened a couple of hours ago that I need to document.
Emily & I had to run out to the store to pick up diapers for
Joshua tonight (I thought we had another box, but oops, we
didn't) and he asked if he could come, too. Since he didn't
wake up today until 6:40pm, I was thrilled that he wanted
to go out with me & immediately said, "Let's get your
pants, socks & shoes on!" While we were there, he was
asking, "What that?" or "What that called?" as he pointed at
things. A shirt, a coat, juice, a sign, stickers,
etc. Everywhere he looked, he found things he could not
identify & would point and ask me to name the item. He
could not remember what they were.
Then, when we were about 1/2 mile from home, he asked,
"Are we almost there?" I told him to look where we were
and he did not recognize our street, so I assured him we
were almost home. When I pulled into our driveway, he
asked, "Who house is that?" I looked at him and realized he
was not kidding in the slightest. I quietly said, "Joshie,
that's our house." He pointed at the garage and asked, "And
who house is that?" I told him, "That's our garage, Baby.
It's part of our house." He exclaimed, "REALLY?!?
WOW!" Then, while I was getting him out of the truck, he
asked again, "Ih dat wiwwy our hout?" (is that really our
house) I told him again that yes, it really was.
Once he was inside, he was fine. He recognized everything
in the house.
I was thinking about what could be going on and wondered
if his long-term memory is failing. My big kids and I
nonchalantly quizzed Joshua, asking things like, "Do you
remember when we went to the beach last year?" and
"When we got Slurpees after going to the park, what flavor
did you get?" He didn't remember going to the park, much
less getting a Slurpee (that happened last week). He does
not believe he's ever been to the beach. Just now, he asked,
"How do I shoot?" for an archery game on the Wii that he
hasn't played in months.
You know, I can put a positive spin on his regressing &
acting like a 2-3 year old by saying he's cute and it's sweet
or funny because if I don't think about WHY it's happening,
it IS adorable, but I can't find a way to spin his losing
memories. This really hurts.
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Written October 25, 2012 7:12pm by Kate Parker
Picture taken at the park,
May, 2011. Explanation of why I added it to this journal
entry down below.
Last night, after Megan & I had said goodnight to Joshua &
were relaxing toward sleep, Joshua made a comment about
going to heaven & how he gets to choose (when he goes). I
asked if he wanted to go soon or if he thought he'd wait
awhile and he answered that he didn't know for sure, but he
thought it might be pretty soon. I had my arm wrapped
around his waist (we were both laying on our sides) and
when he told me that, I gave him a little squeeze. Then,
wondering, I asked, "Joshie, do you ever see angels?"
He answered, "No."
Megan then asked, "Do you see shiny people?" (She later
told me she doesn't know where that phrase came from, as
we've never referred to angels as 'shiny people'. She said it
just popped into her head. In hindsight, we both believe
that was God-inspired).
Joshua told her, "Yes!"
Megan asked, "Do they have wings?"
Joshua replied, "Yes."
Megan said, "Buddy, those are angels," and Joshua was
surprised, "They are?!?" Megan confirmed, "Yep, those
shiny people are called 'angels'." Joshie, trusting his big
sister, agreed, "Okay."
I asked, "Do they talk to you?"
Joshie said, "Yes."
"What do they say?" I inquired.
He thought for a moment, then answered, "I don't know."
Megan offered up the idea that maybe he understands that
they're talking to him, but he can't articulate what they
say. Maybe they speak to his heart & he understands that,
but they don't speak verbally. We don't really know and
Joshua didn't say anything at this point in the conversation
that might have shed some light on what he thought.
I went on, very curious, asking, "Where do you see the
angels?"
He confidently responded, "Outside."
Megan and I both asked, "Really? Outside?"
Joshua emphatically told us, "Yes. They are outside."
I told him I thought that was awesome that angels were
watching over him and talking to him. I said that I wished I
could see the angels, too. Joshua said, "Next time I see
them, I'll ask if they will stick around so you can take a
picture." Megan & I chuckled & as I hugged Joshua again,
I told him, "I would love that!" Megan added, "Joshie, I
think it would be so cool to see a picture of an angel!" He
replied, "Okay. I'll see if they let Mommy take a picture. I
really really really want a picture, too!" Then he paused for
about 5 seconds before going on, saying, "I think they'll say
'Sure!'" Megan and I laughed & told him again that we
thought that would be really neat.
We thought the conversation was over and said goodnight
to Joshua once more, but he wasn't done yet and made that
clear by ignoring my "Good night, Baby," to ask, "I know
angels take me to heaven, but can you change your
mind?" I was a little confused and asked, "What do you
mean, Joshie? Change your mind about what?" He said,
"Angels take you to heaven, but can they bring you back if
you change your mind?" I hugged him close, then
answered, "I know that there have been people who say the
angels took them to heaven & they spent some time there
looking around and then they came back to their families
again, so yes, sometimes that happens." Then, after
swallowing hard, I quietly added, "Joshua, when the angels
take you to heaven, if you look around and see how
wonderful it is and if you are having a super-lot of fun, it's
okay if you don't want to come back here. We're all going
to be coming to heaven, too, remember? So you aren't
going to be in heaven all alone." He turned his head, gave
me a kiss as he reached backward to wrap his arm around
my neck/head in a hug (he's the only kiddo of mine who
has ever hugged me that way ~ the picture attached to this
entry shows what I'm talking about), then said in a satisfied
voice, "Okay. I don't know if I will change my mind." I
hugged him back & assured him that I would understand if
he didn't.
If you are thinking it probably took everything in me to not
beg Joshua to change his mind & come back if God gives
him that option, you'd be right. I wouldn't wish him to
come back & hurt like he does now, but I am 100% sure I
will wish with every fiber of my being to be able to see &
hold him again when he's no longer here. However, as with
every conversation about heaven & dying that Joshua and I
have, it's not about my feelings or making me feel better,
and I am not going to burden him with my sadness because
I don't think that is the right thing to do. My focus is on
wanting to make sure he knows where he's going is an
amazing, wonderful place that he is going to absolutely
love and that yes, we'll all be there together, but we'll arrive
in heaven at different times, and it is totally okay that he
gets to go first. The few times Joshua has realized I am
crying & asked me why, I have told him that I'm sad that he
gets to go to heaven first because it is going to be so
awesome & I want to go with him. He'll tell me something
like, "Don't cry; you'll come, too, Mommy," in a tender,
sweet voice and then he'll giggle and brag, "But I go first
and you have to waaaait!" in a singsong voice. Bottom line
is that he's not afraid of where he's going, he's not afraid of
dying, and he knows the rest of the family will be with him
again in time, which is all that matters. I'll deal with my
broken heart after he's gone.
It's amazing to me that Joshua is seeing angels now, but I'm
not surprised since I've heard of children (and adults)
seeing angels and figures "made of light" who keep watch
and/or visit the person before they die. It is comforting to
know that God has sent some of His heavenly beings to
Joshua and that He is letting us know through Joshua that
angels are with him.

Written October 22, 2012 9:19pm by Kate Parker
Today was a "sleeping"
day. After the past two days filled with active play, I
wasn't surprised that Joshua didn't wake up until almost
5pm. It's the price he pays for having fun.
He's feeling all right today. Comfortable & happy, which
is great. Ironically, I'm having a bit of a come apart at the
moment, which is insane considering that Joshua is pretty
okay these days. But, insanity aside, I am battling a deep
sadness & fighting against a fear that Joshua could 'tank' at
any time. A year ago at this time, Joshua had just gotten
out of the hospital & was doing relatively *great*. He was
walking around, going outside to play for short periods of
time, etc. By the end of October, he was unable to sit up
without extreme pain & was begging me to call Dr. W to
take the "ball" out of his head. On November 3rd, 7th and
12th, he had brain surgeries. Without those surgeries, he
would not have lived to see Christmas, much less survived
another year! So... here we are now, with Joshua doing
relatively well. There is zero chance of any 11th-hour
surgeries, which means that if he starts to really tank like he
did last year, we'll know it's almost over. I don't want it to
be almost over. I just don't.
Most of the time, I don't think Joshua is anywhere near
dying. I mean, yes, he's obviously declining & I am not in
denial that yes, he is actually dying, but it doesn't strike me
as an imminent thing most days. Still, I can't shake the
memory of last year and how he went from happily playing
with his brothers & sisters each day to holding his head on
the ground, crying for hours & begging for me to make it
stop hurting, with increasing periods where he'd stop
breathing & we'd have to jostle him to get him going
again. It happened before & I know it could happen
again. I suspect that eventually, he will have a decline that
we can't stabilize, and I'll know the end is at hand, but as
we enter the period surrounding the holidays, I can't help
but pray that God will allow Joshua to stay as "okay" as he
currently is until 2013. It's a lot to ask, I know, but the
Bible says to make our requests known to God, so why not
go big? In the end, His will is what is going to happen, but
just like my kids ask for things they suspect they don't have
much chance of getting, I ask my Father for similar
things. Can't hurt to ask! And who knows, God might
decide to grant my request.
There are multiple other "issues" swirling about in my life
that contribute to my feeling down these days, but I am
trying to keep my attitude where it should be & my focus
on what is important. Some hours I succeed. Other hours,
I fail. Overall, though, despite a pervasive sense that I have
no idea what God is doing and a feeling that I'm currently
walking alone on this road He has me on (which I know in
my head is not at all true, but feels differently), I refuse to
give in to despair because I'm pretty sure if I did, I'd fall so
far down into a hole that I would not get out for a very long
time & I can't do that to my family. I know that God is still
God, no matter what, and He is working out something for
not only Joshua's good, but mine, as well. I won't stop
trusting Him just because I can't see what's up around the
corner & the road is really dark. And no, I'm not saying all
of this to sound pious. I'm writing it out to remind myself
of what I know to be true & what I know I need to do. :)
This song has been 'speaking' to my heart a lot the past
couple of days. I love that God uses music to bring me
comfort no matter what circumstances in life look
like. He's pretty amazing that way. I do hope you'll take a
couple of minutes to listen to this song & pay attention to
the lyrics. It's BarlowGirl's "I Believe" and it is really a
beautiful song with profound
meaning. http://www.youtube.com/watch?v=syKpkglSsdY
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Written October 21, 2012 9:12pm by Kate Parker
Joshua is usually at his best
when he first wakes up in the afternoon. When he is
feeling good (for him), he enjoys playing with his brothers
& sisters, which makes me happy to watch. As he has lost
stamina & skills, the manner in which Joshua can play has
changed, so the older kids have adjusted & modified their
games to accommodate what their baby brother can still do.
Today, Joshie & Isaac were playing "secret
agents". Typically, that game for my boys would involve a
lot of hustling around the house, hiding behind furniture,
ducking & shooting their toy guns, but all of that is now
beyond Joshua's physical capabilities. Today, Isaac made
his brother a tiny, snug "fortress" out of couch pillows,
including a pillow to be sat on (for comfort). Then, while
Joshua sat ensconced in his "super secret agent hideaway,"
Isaac did all of the jumping, rolling & ducking, keeping up
a steady patter of commentary of what was happening so
that when the "bad guy" came into view, both boys could
shoot at the imaginary foe. It was absolutely perfect.
As I watched my two youngest boys play together, I was
struck by the love they share and their sweet relationship.
Joshua is blessed to have many siblings & one of my joys is
witnessing the unique ways he interacts with each of
them. Isaac rarely talks about what he sees happening to
Joshua, though I know he is aware of it all; instead, he
shows all of us how to push past our sadness to enjoy our
days with Joshie to the fullest. Today's game of "secret
agent" reminded me of that wisdom yet again ~ and
brought lots of smiles in the process!
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Written October 20, 2012 10:40pm by Kate Parker
Today's picture was actually
taken last night when Emily was playing hide-n-seek with
Joshua. He was so giddy about how well he was hiding &
how tough it was for his sister to find him. I taped part of
their game & after watching the video tonight, Megan,
Emily, Sarah & I agreed that it was hilarious.
Last night, when I was getting Joshua ready for bed, he
began tip-toeing along the bed. When I asked what he was
doing, he said in his not-at-all-quiet-voice, "I
keeking!" "You're sneaking?" I asked and he affirmed that
yes, he was sneaking. I asked why he was sneaking & he
answered that he did not want to wake up Megan. I
suggested that perhaps he should get into bed if he wanted
to not wake up anyone (Adam, Emily, Sarah are also
upstairs & all were asleep) & he saw no reason for that,
continuing to tiptoe around while loudly announcing, "I
tink I dood at keeking!" (I think I'm good at
sneaking) Suddenly there was a droll voice calling out,
"Uh, not so much!" I busted up, laughing, and Joshua
giggled as he tiptoed toward me, then said in an incredibly
cheery & satisfied voice, "Megan's awake!" I was still
laughing but managed to choke out, "I don't think you're
very good at sneaking, Joshie." He insisted, "Yes, I
IS!" with a huge grin on his face. Shortly thereafter, he let
me put him in bed & the game was over, but oh my
goodness, it was a priceless moment that I hope to never
forget! :)

Written October 20, 2012 1:38am by Kate Parker
I finally heard from Dr. T. What I learned from him left
me feeling like crying (which happened a little while later).
He reminded me that he doesn't have outpatient privileges
(he's not supposed to give orders for a child who is not
admitted to the hospital, so he acts in an advisory capacity
to help our pediatrician know how to manage Joshua's
prescriptions to best deal with his pain), then told me that
he has done everything he can for Joshua within the
limitations on his practice privileges because it's the right
thing to do, but he can't take things much further.
Also, with regards to hospice, he said that because of his
lack of outpatient privileges, he would not be able to
participate in Joshua's care if Joshua were enrolled in
hospice. That would leave us with no one giving Dr. S
advice about how to manage Joshua's symptoms other than
the hospice medical director, who made it clear last year
when Joshua was on hospice that he does not know what is
best for a pediatric patient as complicated as my son.
That left me wondering what I was supposed to do. I know
we WON'T put Joshua on hospice, of course, because we
can't lose Dr. T's services since there is no one else locally
who can do what Dr. T does for Joshua. But he's feeling he
can't take things much further, so NOW what??? I know he
went out on a limb for Joshua last December because he
talked to Dr. W, who didn't think Joshua would live past his
birthday in March if he even made it that far. I think Dr. T
was willing to help because he knew we didn't have anyone
else and he thought it would be for only a few months. No
one had any idea Joshua could possibly live another year as
a result of the surgeries Dr. W had done, so there was no
long-term plan for how things would be managed if he
did. It's put us in a bit of a rock vs. hard place position.
Oh, and we can't put Joshua on a PCA for pain
management because Dr. T said that at the doses of opioids
Joshua is getting, he would need robust support to maintain
a PCA at home and that would require good home health
care services. We already know those don't exist here.
When Joshua needed his port dressing changed while on
TPN last summer, the home health care nurse traveled once
a week from 75 miles away. When we had a problem with
the port & called for assistance, we were told the nurse
could only come once a week due to her schedule and the
fact that we were so far away. She was the closest nurse we
could get to come here, too ~ calls were made to multiple
agencies with no success (the joys of living in a small town
in rural southern Oregon). So no, there won't be any
"robust" home health care services that could support
Joshua being on a PCA pump at home. Hospice wouldn't
manage it, either. They couldn't even get Joshua IV fluids
at home without a major upheaval, which played a part in
why we ultimately removed him from the hospice program.
Yes, hospice *can* be fantastic, and the hospice program
available to us *was* full of lovely, kind-hearted people,
but they were not able to manage Joshua's needs. Their
experience was not with pediatric patients, much less a
pediatric patient with an uber-rare condition. It was not a
good fit. And now, after hearing from Dr. T what would be
necessary for Joshua to be on a PCA pump at home &
discussing the situation with Dr. S (who is fully aware of
the abilities & limitations of our local hospice program,
having worked with them last year during the time Joshua
was enrolled), we agree that hospice isn't going to be a
route we can pursue.
I asked Dr. T what he thought we should do regarding the
pharmacists being at the limit of how much oxycodone they
could get Joshua each month. I asked if we should switch
him to higher methadone + lower oxycodone and he said
that was what he'd hoped to do last year when he took over
Joshua's pain management, but Joshua's body has been on a
different timeline than his (Dr. T's) ambitions. He is going
to talk with Dr. S to discuss strategies for making the
switch. Dr. S & I talked today about how it might be a
good idea to admit Joshua up in Portland so that Dr. T can
oversee changing over the medications. I don't know if that
is going to happen or not; we'll see what Dr. T & Dr. S
come up with. Something will need to change, though,
since we are at the limit of oxycodone that can be
dispensed.
So... I have to assume that Joshua won't need a PCA pump
and that we'll be able to manage his pain with oral meds
alone since the door to a home PCA has been closed. If
Joshua starts vomiting a bunch and needs to go back to the
hospital, Charley & I agree that I will drive Joshie to
Portland because he can get inpatient care from Dr. T up
there. Our goal is to keep him out of the hospital and we
don't want him to die there because Joshua doesn't want to
die in a hospital, but I am trying to get to a place where I
am okay with whatever scenario God brings about & if
Joshua needs to be in a hospital in order to keep him
comfortable at the end of his life, then that's where he'll
be. I don't want to be so stuck on wanting things to happen
a certain way that I fall apart if they don't go "my way". I
want to be able to peacefully accept however the end comes
about, even if that reality looks completely different than
what I thought would be best. I really do know & believe
that God's plan is and will be better than mine. It just
doesn't always feel that way.
We continue to see signs of neurological deterioration in
Joshie & that's always hard to admit. He can't calm himself
down if he gets upset about something anymore ~ the
ability to self-regulate is just gone. He's like an
overwrought toddler... crying & wanting to stop but not
being able to. We have to physically contain him so he
can't flail around & rock him until he stops crying, which
can take over an hour sometimes. I know it may sound like
Joshua is just being a spoiled brat & we shouldn't cater to
his awful behavior, but that's not it at all. It's not deliberate
& it's obvious to anyone who witnesses a meltdown that it
is not something he can control.
His speech gets more garbled as time goes on. If he's
saying short sentences, he's still pretty understandable (to
his family members, anyway). As long as we have some
contextual clues, we can figure out what longer sentences
or phrases are. But if we have no idea what he's talking
about when the words start coming out of his mouth, we're
in trouble because we won't have any idea what he's
saying. I think one of the most-awful feelings these days
comes from seeing the look of defeat in Joshua's eyes &
hearing him say dismissively, "It doesn't matter," when I
have to ask him to repeat himself because I did not
understand what he was trying to tell me. I hate the times I
cannot understand his speech. I always feel like crying
when it happens because I feel like I've let him down.
His style of play has regressed. He is very into "hiding"
and then us having to find him, but he hides in plain sight,
believing that if he can't see us, we can't see him. He will
cover his head with a blanket & giggle as someone asks,
"Have you seen Joshua? Where did he go? He was
RIGHT HERE a minute ago!" He then delights in pulling
the blanket off his head & yelling, "I is here!" It's adorable
& he's cute as can be, but it's also sad because he used to be
good at playing hide-n-seek and at the age of 6.5, to see
him playing like a toddler is both disconcerting &
sobering. It does beat the alternative, though, so while I'm
sharing what is going on, please don't confuse my words
with complaining.
He's become very lovey-dovey as of late. He's hugging and
kissing everyone throughout the day & he makes me smile
when he sings out, "Mommy mommy mommy, I love my
mommy!" I sing back to him, "Joshie Joshie Joshie, I love
my Joshie!" and he giggles every time before singing to me
again. A friend who has lost a child wrote me a note telling
me to take more pictures than I think I need & to make a
memory Every. Single. Day. I'm taking that advice very
seriously & will try to write each day what stood out &
needs to be remembered. For today, in addition to the
memory of Joshua playing hide-n-seek with Emily &
laughing as he figured out he could lock a door to keep her
from coming to get him, I marveled at the bartering
prowess my son possesses. Despite cognitive impairments
in multiple areas, he can still bargain. He'll ask if he can
have 3 hours of on the computer (he can't tell time, so it's
just a number to him & we can tell him his time is up after
1 hour and he'll be fine with it) and when I tell him, "Sure,"
he'll immediately respond, "How about 5?" I grin & say,
"How about 3?" and he comes back with, "How about
4?" I'll say, "How about 3.5?" and he'll again ask for 4. I'll
give in and he smiles, says, "I win!" and limps away,
utterly pleased with himself. Tonight, he finagled $3 from
Emily when the deal they'd made originally had been for
$1. I'm tellin' ya, the child has a gift. Or maybe he was
born into a family of pushovers, because when it comes to
Joshua, we definitely fall into that category. :)
One last thing & then I need to get to bed for the
night. Our house is decorated for Christmas and while it
feels really weird to have holiday decorations up in midOctober, the smiles we see from Joshua when we plug in
the lights at night make me feel happy. We'll get a tree as
soon as they become available for sale and we're looking
forward to decorating it with Joshua. He LOVES "Cwitmit cwees" and can't wait to get one. For that reason,
neither can I.
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Written October 17, 2012 12:21am by Kate Parker
Still no word from the palliative care doctor. Well, he left a
voicemail on my cell phone last Thursday afternoon telling
me he was sorry it had taken him so long to get back to me
& he saw that I'd emailed him & he would shoot me back
an email later that day. I originally emailed him on
October 9th. The voicemail came on the 11th. No word
since then. I did send a polite, short "reminder email" in
the late afternoon on the 12th. I really don't know what is
going on to cause me to not hear from him. That isn't the
norm at all. It is a bit disconcerting since he's in charge of
managing Joshua's medications & I don't feel like I can
make any decisions regarding what we're doing or how
we're doing it without discussing it first with Dr. T. I guess
that since we're managing Joshua's symptoms all right at
this point, it's not a crucial situation, though, so I'm kind of
shrugging it off right now. I can always try to track him
down the next time I'm in Portland with Bethany to find out
what the heck is going on.
Joshua broke his right foot last night. He was walking &
twisted his foot a tiny bit, which resulted in a loud cracking
sound that Charley heard as Joshua fell to the floor,
grabbing his foot. I asked him what had happened and he
said, "I cracked my foot hard & now it hurts really
badly." We could see a bruise coming up along with a
bump on his foot and knew that yep, he broke it again. The
fact that he could feel pain in a foot that has almost zero
sensation (nerve damage caused by multiple episodes of
tethered cord) spoke volumes. It's pretty sad that he can
break bones simply by walking, but it's not like this hasn't
happened several times already. I gave Joshie a small dose
of oxycodone to help offset the pain in his foot and we
continued our evening. We debated taking him to the
doctor's today, knowing she'd send him for an x-ray to
confirm the break, but ultimately decided against it because
it would have been a multiple-hours-long outing that would
have left Joshua exhausted and at the end of it all, we
wouldn't have an outcome that was any different than if we
stayed at home & did nothing. He can't be put in a cast
because the lack of sensation means he can't tell if there's
rubbing or if a cast is too tight, so there'd be no way to
know if a pressure sore was developing. The risk of that
(pressure sore), which would lead to the risk of an
infection, is too high, so all we do with a broken foot is use
a splint held on with an Ace bandage. Dr. S established
this protocol in July, 2011, when Joshua had 7 broken
bones in his right foot & 4 in his left, which alerted us to
the severe demineralized condition of all of his bones. On
the bright side, because he has almost no sensation in his
feet, he doesn't feel any serious pain & can still walk
around on his foot, albeit with a limp. Yes, we will try to
keep him off of it as much as possible, but in the grand
scheme of things, if his foot isn't bothering him, we aren't
going to worry about it. We want to let him do whatever
he's physically capable of & desiring to do even if that's
just walking from the living room to the kitchen to get a
snack. No one is going to limit his participation in an
activity if it's something he wants to do. Not at this point.
We took him to Wal*Mart this afternoon to pick up a pair
of shoes since it's getting colder & on the occasions where
he wants to go outside for 15-20 minutes, we want him to
be able to do that. He's in size 1 now. The shoes he picked
out are black with a neon lime green stripe running around
the edge of the shoe. He liked them because "they match
Mommy's!" I have a pair of gray Nikes that have
fluorescent red, yellow & lime green accents and Joshua
thinks they're very cool. LOL So now he has shoes like
mine & he thinks he is hot stuff because of it. Too sweet &
very cute how little things make him so happy.
Megan (Joshua's oldest sister) has her birthday coming up
in a few weeks. She has requested that we put up our
holiday decorations & have a "mini Christmas" for her
birthday just in case Joshua is not here on December
25th. So, at the risk of seeming crazy, that's what we are
going to do. We even have a live fir tree that Charley has
been growing for years that we can decorate. :) Each of
the kids will get a gift to open, we'll bake sugar cookies
(Joshua LOVES decorating them) & other treats, the house
will be decorated with strings of lights & garland and, like
Megan said when she presented the idea to her father & me,
Joshua will be thrilled, which is all she wants for her 21st
birthday. If Joshua is still with us when the real Christmas
comes around, then yahoo! We'll have another
celebration! If he's not, though, we'll be happy that we did
our mini-Christmas and had one last holiday with our
Joshie.
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Written October 14, 2012 10:05pm by Kate Parker
I haven't heard back from Joshua's palliative care doctor
yet, so I don't have any information about the "do we
switch him to a PCA pump & TPN now or not" decision. I
do know that if we put Joshua on a PCA pump & TPN, we
are also considering enrolling him in the local hospice
program again because while it wasn't a good fit for Joshua
last year, it might be worth looking into if he gets put on a
pain pump & IV nutrition.
Some of the benefits of having Joshua on hospice would
include:
~ having a nurse who could come over to re-load IV
fentanyl in the PCA pump
~ dressing changes that could be done at home versus my
having to drive Joshua to the hospital (a process that is
becoming increasingly difficult as he feels less well when
taken out of the house)
~ nurses who would pick up prescriptions & save me the
effort & time away from Joshua to do it
~ assistance for the other kids in the form of play therapists
& counselors available for them to talk to
~ someone to call when Joshua is imminently close to
going to Heaven
We did experience some difficulties with our local hospice
program, mainly with communication,
unavailability/difficulty getting someone to help us when it
wasn't regular business hours, and their inexperience with
having a hospice patient who was a child. The main reason
we withdrew Joshua from hospice last year was their
inability to provide IV fluids when he got dehydrated as a
result of illness. Children on hospice are different from
adults on hospice & the hospice organization in town was
not familiar with those differences at the time we were
working with them. I don't know if anything has changed,
but Charley & I are considering putting Joshua back on
hospice since many issues that were present last year have
been resolved & wouldn't enter into consideration
now. We are waiting to get guidance from Dr. T before
making a final determination.
As for how Joshua is currently, that's somewhat hard to
pinpoint. Generally, part of each day is really good, but
how big that "part" is can vary widely. He was able to go
outside on our porch with David, Isaac & Sarah yesterday
for about 20 minutes, where they all sat & played with
sidewalk chalk together while talking. Having good times
wears him out quickly, though, and leaves him sweaty, gray
& working harder to breathe. When he came inside
yesterday, there were dark purple circles under his eyes &
his skin was gray & mottled. I knew he was having
significant apnea & oxygen deprivation, but I didn't regret
letting him go outside with his siblings. I am happy when
they get to spend time doing something fun with Joshua.
We're still working on getting little mementos made, but
finding times when Joshua is physically up for doing
something and wants to cooperate are a challenge. I told
him I wanted to put our handprints inside our special book
that we read at bedtime and he asked, "So you don't forget
me when I'm gone?" Yeouch. I hugged him close &
assured him that I will NEVER forget him... that I could
NOT forget him, ever! I don't know how he could have
thought that was even a possibility. Megan, Adam & Emily
were all in the room & immediately told their brother the
same things ~ no one will forget him, how could we ever
forget him, etc. Then I reminded Joshua that we're all
going to be in Heaven together, so even though he gets to
go first (lucky boy), we're all coming right after him! He
was worried that he'd be all alone, so I reassured him in the
same way I reassure myself ~~ I told him that going to
heaven is going to be like walking into a new house. He
gets to go in the front door first, and he is going to look at
everything, then turn around to tell me what he's seen and
I'm going to be standing right behind him, waiting to hear it
all because I came in the front door after him. After hearing
that, Joshua nodded & said, "Okay. Good." Then, feeling
better, he held my arm that was wrapped around his side
and closed his eyes to go to sleep. Do I know if that
scenario is accurate? No, of course not. I haven't yet been
to heaven, so how could I? What I *do* know is that time
is different in heaven than on earth and a day is like a
thousand years (2 Peter 3:8). If that means a day in heaven
is like a thousand years on earth, then it's logical to reason
that everyone who dies in a 1,000 year span all enter
heaven on the same day, albeit at different times during that
day. As such, everyone in my family will be in heaven on
the same day, which I interpret to mean Joshua will never
be aware that he is without his family beside him. If I'm
wrong, I won't know it until I'm in heaven and at that point,
it won't matter. If I'm wrong, it's not going to matter to
Joshua once he's in heaven, either, because he will have a
perfect understanding (that I don't yet have) of things, so it
will be okay for him and he isn't going to be sad (the Bible
promises there are no tears in heaven ~ Revelation
21:4). For now, my goal is to be as honest as I can in such
a way that it reassures him and calms any anxiety he has
surrounding dying. I don't want him feeling scared or
worried in any way; rather, I want him to be looking
forward to going to heaven in the same way any other kid
would be excited about going to Disneyland. The truth is
that heaven is THE best place anyone could ever
comprehend being & we should all be totally jazzed to go
be with Jesus for eternity, so I want to convey that to
Joshua. He doesn't need to spend one moment thinking
about how sad we will be without him. We'll think about
that, instead. After conversations like the one we had, it's
not like I can avoid thinking about it.

Written October 10, 2012 12:22am by Kate Parker
Thank you for praying for wisdom to know what to
do. Please continue those prayers. I did have a series of
things happen today that made me think perhaps God is
pointing Charley & me in the direction we're supposed to
go, but I'm not sure yet.
Dr. T (palliative care doctor) increased Joshua's methadone
dose today, which I am hoping is going to help at least a
little. So far, all we're seeing is more sleepiness &
emotional fragility, but not a significant decrease in pain;
however, it'll take a few days to really assess what kind of
impact the increase is having, so there's a chance we'll see
his pain go down a bit.
This afternoon, I went to pick up Joshua's meds. The
pharmacist told me they are running into problems getting
Joshua's oxycodone because the amount hits their ceiling of
what is allowable per the DEA. He suggested we consider
changing Joshua to IV meds or asking his palliative care
doc to add a different narcotic so we can reduce the amount
of oxycodone he needs.
Considering that Joshua isn't metabolizing things well
anymore (he's lost a little over 2.5 pounds in the past 6
weeks & is very thin, with his ribs & shunt tubing clearly
visible through his skin, and I am having trouble getting his
daily fluids/formula into him because I can't run it faster
than 3-4 ounces per hour or he gets sick) and there's this
problem with obtaining enough oxycodone each month, I
emailed Dr. T tonight to ask about transitioning Joshua to
IV fentanyl via PCA pump and TPN for nutrition (food via
his central line, thus avoiding his stomach/intestines
entirely).
Joshua isn't doing well with the regimen we're currently
using of oral meds for pain & formula for nutrition, so we
need to do something different, and I don't really see how
we are going to manage his symptoms as he declines
without moving him to IV fluids & pain meds. He doesn't
want to be accessed all the time, but Megan and I explained
to him that if the pharmacy can't get enough medicine for
him, his head is going to hurt A LOT and we don't want
that to happen. I told him that if he throws up a lot, we will
have to take him back to the hospital to get fluids and pain
medicine there, and that is something he wants to
avoid. He finally compromised with us, saying that he
wants to wait until we can't get him medicine anymore and
then we can change things. It makes me sad to be at this
point where I'll have to ask him to endure weekly
procedures that really distress him, but there doesn't seem
to be a better option. Even if Dr. T can come up with a
different oral medication to try, it isn't going to increase
Joshua's ability to metabolize & utilize the drug
effectively. The whole situation is discouraging since it
highlights the reality of Joshua's decline, but having the
pharmacist telling me he is having trouble getting all of the
oxycodone Joshua needs did help with the decision I was
wrestling with.
If we thought he was going to die in the next week, we
would probably make a different decision, but the adults in
my family believe that Joshua has more time than that
remaining with us and we are not going to do anything to
hasten his death. Our primary goal is still to keep Joshua
comfortable as he declines & to do what we can to enable
him to enjoy whatever activities he wants to do for as long
as he can do them. From our perspective, it seems that
utilizing a PCA pump & TPN will help us achieve that
goal. Now we'll wait to hear what Dr. T thinks.
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Written October 8, 2012 12:08am by Kate Parker
Joshua is still sick, but I will do everything I possibly can
to keep him from having to go back to the hospital. Things
happened and words were uttered by doctors while he was
inpatient that convinced me I needed to get him out of there
as quickly as possible & that I needed to keep him out. As
such, I am keeping him on a continuous feed of water (28
ounces) + formula (32 ounces) running at a very slow 3
ounces per hour for 20 hours per day to help keep the
chance of vomiting down. I'm also giving him an antinausea medication (Zofran) every 8 hours rather than every
12 hours, as we used to do.
There are some decisions that I have to make regarding
pain medication and the route by which it is
delivered. Right now, Joshua gets everything through his
g-tube. Medication goes into his stomach, gets pushed into
his small intestine & is absorbed into his blood stream,
where it can be used by his body to give him pain
relief. Last week, when he had labs drawn, some of the
values caused Dr. S to believe that Joshua might not be
metabolizing his formula very well anymore. When he was
was weighed at Dr. S's office on Friday before getting
admitted to the hospital, we found Joshua had lost 2.6
pounds in the past 6 weeks. This made me think that Dr. S
is probably correct about Joshua's inability to properly
metabolize food now. That led to my wondering if he's
able to metabolize the medication he is getting, especially
his pain meds.
The pharmacist told me Joshua would be better served by
having a PCA pump with straight fentanyl in it than
needing to take almost an ounce of oxycodone at every
dose. On the surface, it seems like a really great idea. We
could give him IV medication, which would eliminate the
concern about his ability to metabolize medication, and we
wouldn't have to worry about him having issues with
vomiting because even if he began throwing up, we could
still give him pain meds. Because he'd have his central line
continually accessed, if he did begin throwing up, we could
easily add IV fluids & TPN (nutrition via IV) and thereby
keep him hydrated, fed & his pain managed. Sounds ideal,
right? Yeah, but for every yin, there's a yang, which means
there are drawbacks as well as benefits.
Switching Joshua to IV meds would mean keeping his port
accessed at all times. He would require the port needle be
changed (de-accessing, then immediately re-accessing) and
dressing changes once a week. Continual access greatly
increases the risk of a central line infection, which could be
life-threatening in Joshua's fragile state.
I realize those negatives don't sound so bad & at first
glance, the benefits of switching to IV medication
outweighs the drawbacks. However, Joshua's feelings
throw a major wrench into this picture. He HATES having
his port accessed. It is traumatic for him every single time
we do it. When he first got his port, we used EMLA to
numb the skin so that accessing the port was
painless. After awhile, EMLA stopped working & after 2
very painful accesses, we switched to LMX numbing
cream. Unfortunately, his skin blistered with LMX and
even more unfortunately, the day his skin blistered, we still
had to access him, which was extremely painful for
him. After that, we were introduced to cold spray, which
numbs the skin but stings as it is applied (it feels similar to
getting a wart frozen off ~ that stinging, burning sensation
that continues even after the spraying stops). It was all we
had left to use, though, so that's what we've used for
years. Joshua knows a port access will hurt even though he
doesn't feel the needle go in. The idea of having to do port
accesses every week would cause him serious levels of
anxiety.
Then there's dressing changes, which are always
painful. Joshua has extremely sensitive skin that tears
easily. Thanks to my friend, Kate Estes (her son has
mitochondrial disease ~ http://www.prayingfornoah.com), I
have rolls of a special tape that won't wreck Joshua's skin,
but the tegaderm patches that must be used for the dressing
hurt when they are removed & they leave Joshua's skin
very red and tender. Unfortunately, if he has to be accessed
at all times, the tegaderm & the port needle would be
removed, then an antiseptic solution would be used to scrub
the skin over the port before a new needle was
placed. Scrubbing the red, tender skin is superpainful. Then a new tegaderm patch is put over the port
and stuck to the tender skin. The result is a sore chest for a
couple of hours. Best-case scenario would require a
dressing change once a week, but if the dressing came
loose (which can happen with things like excessive
sweating, which Joshua experiences at times due to his
autonomic dysfunction) or got wet, then dressing changes
could be needed more frequently.
Each time Joshua has his port accessed or a dressing
change, he cries & shakes. It's traumatic for him. I know
some kids are champs at getting accessed/de-accessed, but
this is one of Joshua's boogeymen. As such, it's a HUGE
drawback, in my mind, to switching him over to IV
medication. I have to consider his quality of life. Would
putting him on IV meds, thus requiring weekly port
access/de-access & dressing changes, be worth the hit that
Joshua's happiness & peace of mind would take? Right
now, today, I can't answer that question. I just don't
know. It's looking like I'm going to have to get it figured
out, though, since his body isn't doing such a great job of
breaking down & absorbing nutrition or medications
anymore.
Then there is an added consideration that was tossed into
the mix by a doctor, which is, assuming we wait until we
have no choice but to switch Joshua to IV
meds/fluids/nutrition, do we make that switch or do we
interpret his increased vomiting and/or inability to
effectively metabolize meds & food anymore as a sign that
it's time to hospitalize Joshua and give him enough
medication to make him pain-free, which would have the
side effect of suppressing his breathing and would result in
his death? No, that isn't murder. Right this second, doctors
could legally give Joshua a very large dose of fentanyl that
is equivalent to the dose of oxycodone he gets. However,
since his body isn't metabolizing oral medication perfectly,
he's not actually using all of the oxycodone he
receives. We know this because he didn't need the full
dose of fentanyl that he technically should have needed and
the amount he received had to be divided into two equal
doses given a couple hours apart in order to prevent him
from having breathing problems. If a doctor gave Joshua
the amount they could legally give all at once, he would
stop breathing, but in the effort to get him pain-free, I am
pretty sure it could legally be done. So I'm supposed to
think about whether I want to switch him to IV meds soon
or if I want to wait until there's no avoiding it, and whether
I would want to take an inability to metabolize medication
as a sign that it was time to stop fighting all together.
Aren't these fun choices we're being asked to make? And
by "fun," I mean horrific, of course.
Please know, I am not asking anyone to tell me what they
think I should do. I am just sharing what is weighing on
my heart & mind tonight since I couldn't bring myself to
type it all out last night, but I felt I needed to write this out
because it is part of Joshua's story & I will want to
remember this part along with all the others.
I don't know what to do. I'm listening to Joshua cough &
tell me that his belly hurts. This is happening more often
than not now ~ his tummy hurting after he's eaten. It's not
like he ate a lot, either. Maybe 2 ounces of a yogurt
smoothie and 1 Chips Ahoy cookie. *sigh*
I need prayer for wisdom. I need some guidance from the
Lord to know what is the right choice, the best choice, for
Joshua. As long as he has quality of life, I want to enable
him to enjoy his days. But if giving him that time means
taking away a portion of his quality of life (by forcing him
to endure procedures he truly fears & that cause him pain),
then what is a parent to do (that's a rhetorical question, as I
know no one can answer it for me)?
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Written October 6, 2012 9:26pm by Kate Parker
Joshua got discharged tonight from the hospital! He is
battling some head pain that's more intense than usual, but
his nausea is better (he only has moments of feeling queasy
and zofran is controlling that so he isn't throwing up, which
is what is important) and he is SO happy to be going
home. The nurses, Megan & I are seeing lots of smiles,
which is really wonderful for all of us, as those have been
in short supply as of late.
Bethany will be inpatient until at least Monday. No one
knows yet if she'll get discharged then or later in the
week. It depends on how the infection responds to the
antibiotics, so we are praying for a quick recession of the
redness in the area & for her to get out of the hospital as
quickly as possible.

Written October 6, 2012 3:53pm by Kate Parker
Joshiebear woke up and is happy! He announced that his
head hurt and when I told him the nurse was coming to give
him something, he smiled and said, "Thank you." He then
asked for some pudding and french fries, so we ordered
him a tray and are now waiting for that to show up. Joshua
is sitting up, watching SpongeBob, and continues to
tolerate his 2 ounces per hour tube feed without nausea. In
ten minutes, we'll bump him to 3 ounces per hour. I'm
happy that things are going in the right direction for him.
Yesterday, when I was getting things ready to bring the
kids to the doctor's office prior to their being admitted, I
had to go to Adam's work because I needed to switch out
the cars (he had the van & I needed it to transport Joshua)
& let him know what was going on. While I was talking to
Adam, a woman was standing nearby & overheard our
conversation. As I turned to leave, she thrust a folded-up
piece of paper at me. I reached out to take it from her and
as I did, she told me that she wrote poems & felt like she
was supposed to give me this one and she hoped it might
bring me some comfort. I thanked her, told Adam, "Good
bye" and left.
The brief encounter with a kind stranger was obviously (in
my mind) no coincidence. God is pretty darn awesome to
show His love in the midst of turmoil and it really did help
me to be reminded that no matter what was happening,
Joshua, Bethany & the rest of my family would remain
securely in God's hand. Nothing that happens does so by
accident and nothing is a surprise to Him. As such, even
though I did feel stressed, I could stay calm because I knew
that whatever was going to happen, I would not be
experiencing it alone. Knowing that truth brought me
great comfort (and continues to). I praise God for that
woman sharing her poem with me.
This is what was written on the paper:
IN HIS HAND by P.E. (just using initials to protect her
privacy)
When I gave my heart to Jesus,
He placed me in the Father's hand,
A hand so grand and mighty
There is no greater span.
A hand with tender, healing touch,
Yet with strength beyond compare.
Pierced to take away my sin
And all my burdens bear.
Upholding and defending,
As faithful as can be,
Powerful, sustaining,
Embracing all concerning me.
No man can pluck me from it,
For none is mightier than He.
It matters not how weak I am,
For it's His hand upholding me.
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
Written October 6, 2012 2:53pm by Kate Parker
I don't have a lot to update on Joshua. He is still sleeping,
so I can't say how he's feeling yet. As a result of challenges
in getting his meds on schedule and Joshua's overall
demeanor being very subdued & withdrawn yesterday, I
asked the doctor who came in today if we could try to
switch back to Joshie's regular routine with oral meds and
tube feeds/water to see if he's past the puking part of this
virus. Thankfully, the doctor agreed, so at noon, we started
giving Joshua his regular meds and we are giving him a
continuous feed of half formula, half water, at a rate of 2
ounces per hour. If he tolerates it for a few hours, we'll
bump him up an ounce per hour for the next few hours. If
he does well and doesn't throw up at all, then I'm going to
make a case for getting him discharged. He wants to be at
home and he does a lot better recovering from illness in the
comfort of his own environment, so I want to get him there
as quickly as we can.
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Written October 6, 2012 1:43am by Kate Parker
Joshua has stopped vomiting, but is still a little "urpy" and
has to work hard to not throw up after getting meds via gtube (some can't be switched to IV, so they're given superslowly via his tube). While his head still hurts, it's being
managed on par with as good as we get at home (it hurts
"medium bad"). He's getting 500mcg of fentanyl every 2
hours, but could get up to 2000mcg, if needed. We are
being conservative in the amount we give him because his
respiration rate drops to 4-5 breaths per minute when the
fentanyl kicks in and no one wants to make him stop
breathing. They've got resuscitative equipment set up by
his bed & ready to use. When they started his IV fentanyl,
the pharmacist stood in the room watching as the nurse
injected 125mcg every 10 minutes. When I asked what the
deal was, the pharmacist (who obviously isn't around
patients very often) replied, "The amount he's getting is
kind of scary." I nodded & said, "It's a lot," and he agreed,
saying, "In any other person, they'd get this dose and be
dead." I saw the horrified expression on the nurse's face
(she obviously could not believe the pharmacist had blurted
that out) and began laughing. It wasn't what was said, but
rather, the way it was said & the fact that it was said that I
found humorous. Typically, doctors are so careful about
the words that come out of their mouths in situations that
are dicey, so it struck me as funny that this guy was so
openly blunt. I am pretty sure my response made him
uncomfortable, but hey, that's what stress will do to me
sometimes!
It's 5 minutes to 1am right now, so I am going to
bed. Thanks so much for the prayers & caring thoughts and
words for Joshua, Bethany & the rest of my family. It is
very much appreciated!
25 people this

Written October 6, 2012 3:53pm by Kate Parker
Joshiebear woke up and is happy! He announced that his
head hurt and when I told him the nurse was coming to give
him something, he smiled and said, "Thank you." He then
asked for some pudding and french fries, so we ordered
him a tray and are now waiting for that to show up. Joshua
is sitting up, watching SpongeBob, and continues to
tolerate his 2 ounces per hour tube feed without nausea. In
ten minutes, we'll bump him to 3 ounces per hour. I'm
happy that things are going in the right direction for him.
Yesterday, when I was getting things ready to bring the
kids to the doctor's office prior to their being admitted, I
had to go to Adam's work because I needed to switch out
the cars (he had the van & I needed it to transport Joshua)
& let him know what was going on. While I was talking to
Adam, a woman was standing nearby & overheard our
conversation. As I turned to leave, she thrust a folded-up
piece of paper at me. I reached out to take it from her and
as I did, she told me that she wrote poems & felt like she
was supposed to give me this one and she hoped it might
bring me some comfort. I thanked her, told Adam, "Good
bye" and left.
The brief encounter with a kind stranger was obviously (in
my mind) no coincidence. God is pretty darn awesome to
show His love in the midst of turmoil and it really did help
me to be reminded that no matter what was happening,
Joshua, Bethany & the rest of my family would remain
securely in God's hand. Nothing that happens does so by
accident and nothing is a surprise to Him. As such, even
though I did feel stressed, I could stay calm because I knew
that whatever was going to happen, I would not be
experiencing it alone. Knowing that truth brought me
great comfort (and continues to). I praise God for that
woman sharing her poem with me.
This is what was written on the paper:
IN HIS HAND by P.E. (just using initials to protect her
privacy)
When I gave my heart to Jesus,
He placed me in the Father's hand,
A hand so grand and mighty
There is no greater span.
A hand with tender, healing touch,
Yet with strength beyond compare.
Pierced to take away my sin
And all my burdens bear.
Upholding and defending,
As faithful as can be,
Powerful, sustaining,
Embracing all concerning me.
No man can pluck me from it,
For none is mightier than He.
It matters not how weak I am,
For it's His hand upholding me.
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
Written October 6, 2012 2:53pm by Kate Parker
I don't have a lot to update on Joshua. He is still sleeping,
so I can't say how he's feeling yet. As a result of challenges
in getting his meds on schedule and Joshua's overall
demeanor being very subdued & withdrawn yesterday, I
asked the doctor who came in today if we could try to
switch back to Joshie's regular routine with oral meds and
tube feeds/water to see if he's past the puking part of this
virus. Thankfully, the doctor agreed, so at noon, we started
giving Joshua his regular meds and we are giving him a
continuous feed of half formula, half water, at a rate of 2
ounces per hour. If he tolerates it for a few hours, we'll
bump him up an ounce per hour for the next few hours. If
he does well and doesn't throw up at all, then I'm going to
make a case for getting him discharged. He wants to be at
home and he does a lot better recovering from illness in the
comfort of his own environment, so I want to get him there
as quickly as we can.
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
Written October 6, 2012 1:43am by Kate Parker
Joshua has stopped vomiting, but is still a little "urpy" and
has to work hard to not throw up after getting meds via gtube (some can't be switched to IV, so they're given superslowly via his tube). While his head still hurts, it's being
managed on par with as good as we get at home (it hurts
"medium bad"). He's getting 500mcg of fentanyl every 2
hours, but could get up to 2000mcg, if needed. We are
being conservative in the amount we give him because his
respiration rate drops to 4-5 breaths per minute when the
fentanyl kicks in and no one wants to make him stop
breathing. They've got resuscitative equipment set up by
his bed & ready to use. When they started his IV fentanyl,
the pharmacist stood in the room watching as the nurse
injected 125mcg every 10 minutes. When I asked what the
deal was, the pharmacist (who obviously isn't around
patients very often) replied, "The amount he's getting is
kind of scary." I nodded & said, "It's a lot," and he agreed,
saying, "In any other person, they'd get this dose and be
dead." I saw the horrified expression on the nurse's face
(she obviously could not believe the pharmacist had blurted
that out) and began laughing. It wasn't what was said, but
rather, the way it was said & the fact that it was said that I
found humorous. Typically, doctors are so careful about
the words that come out of their mouths in situations that
are dicey, so it struck me as funny that this guy was so
openly blunt. I am pretty sure my response made him
uncomfortable, but hey, that's what stress will do to me
sometimes!
It's 5 minutes to 1am right now, so I am going to
bed. Thanks so much for the prayers & caring thoughts and
words for Joshua, Bethany & the rest of my family. It is
very much appreciated!
25 people this

Written October 3, 2012 12:06am by Kate Parker
Today marked the first time since his last surgery that
Joshua had a desat that he didn't quickly recover from on
his own. He was asleep & was hanging out at 86% oxygen,
then began dropping lower and did not stop going
down. Megan was upstairs with him when this incident
occurred & when she realized he wasn't breathing, she
jostled her brother, which caused him to sharply inhale &
begin breathing again.
I can't really explain how it feels to know it's starting again
(the desats he doesn't bounce out of right away). Yes, we
knew it would happen eventually. No, we're not shocked or
surprised that it happened; after all, we know that someday,
Joshua's brain stem will just stop working and that will be
it. He'll die. But it seems that knowing something is going
to happen doesn't lessen the concern or intensity of emotion
when it finally does occur.
This afternoon, I had to take Joshua to the infusion clinic at
the hospital to get labs drawn & his port flushed with
heparin (to prevent a clot from forming & blocking his
central line). There were a few surprises with his lab
results & Dr. S said she wondered if he was beginning to
not metabolize food/formula properly anymore. I didn't
know that was something that could/would happen, so it
caught me off-guard to hear the subject brought up. We
didn't really get into the details of what not metabolizing
food/formula would lead to for Joshua since he was right
there & we don't discuss anything scary or worrisome in
front of him. I'm sure that if it becomes an issue in the
future, we'll discuss it in detail, privately. She examined
him carefully to try & determine what is causing the pain
he has complained about on his sides and asked me if I
thought maybe he'd broken some ribs. I admitted that idea
had not even occurred to me. You'd think I wouldn't forget
that my son's bones are severely demineralized & thus
break easily, but hey, I did. Too many other things to think
about & remember between Joshua & Bethany, I
guess! The good news is that Joshua's liver & kidneys are
doing *great*, which is amazing when you consider the
amount of narcotics he's getting every day. The bad news
is that we still aren't certain why his ribs & belly are
sore. Overall, though, it's not something we're worrying
too much about now that we know it's not likely to be
anything serious.
Interestingly, Dr. S checked Joshua's eyes and found his
pupils to be widely dilated rather than pinpoint. She
marveled at that, telling me that if we had 1/100th the dose
of medication Joshua had just gotten, our pupils would be
tiny dots. I asked what the significance of Joshua's pupils
being dilated meant and she answered that he's not having
any massive effect from the oxycodone. So, in other
words, the sleepiness and slurred speech that we were
attributing to side effects of the narcotics are actually more
likely to be caused by brain stem deterioration since the
medication isn't affecting Joshua the way you would expect
it to (because of his tolerance). I suppose it doesn't really
matter what is causing the symptoms, but I like knowing
because I really don't want to end up feeling as though we
drugged our child to death. I'd like to know for certain that
it was his brain stem that ultimately gave out, not that we
legally overdosed him. Again, perhaps that's splitting hairs,
but it's emotionally significant for me.
When we got home, Joshua was completely wiped
out. We're going to turn in earlier than usual and I won't be
at all surprised if he sleeps really late tomorrow. I'm
hoping to get a little extra sleep, myself. Days like today,
when both Joshua & Bethany have appointments and I have
extra errands to take care of while we're out, which means
Adam and I are getting them in & out of carseats repeatedly
and in & out of wheelchairs repeatedly and moving the
feeding pump & pulse ox for Joshua from the truck to his
wheelchair & back again while they're hooked up to him
and then putting the wheelchairs in the back of the pickup
& getting them situated so they don't roll around
(repeatedly), all while being stared at by curious people as
they walk by, are exhausting.
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Written October 2, 2012 12:02am by Kate Parker
Something funny but also kind of sad: just before 4pm, I
was getting Joshua's meds & I commented to Adam, "Geez,
I can't believe it's 4 and he's still asleep!" Adam very
seriously responded, "Well, Mom, REMEMBER, he did
play with bubbles yesterday."
Yeah. Playing with bubbles outside for 20 minutes results
in sleeping until 5pm the following day. The sort of funny
part was that Adam was just so matter-of-fact as he
reminded me of this activity Joshua had engaged in, as
though it had been a marathon or something that would
obviously exhaust a person.
Such is the reality of Joshua's endurance level, or lack
thereof. Truthfully, we don't really think about it most of
the time simply because we are accustomed to activity
wearing Joshua out, but occasionally, something glaring
will grab the attention of someone in the family and lead to
commentary, and the bubbles causing complete exhaustion
was one of those things that kind of blew my mind
today. Seriously, being upright & popping bubbles as they
were spewed out of a machine wiped my little guy
out. What 6.5 year old boy gets exhausted by popping
bubbles? Sometimes I can almost forget what is going on
inside Joshua's body & I can even imagine him shocking
his doctors by living for years, but then I get the equivalent
of cold water tossed in my face with reminders that truly,
his little body is wearing out. And yeah, it's not like it's a
surprise. It's not like I don't know the truth. And 90% of
the time, I accept it, too. But there's still that 10% that
wants to think maybe the doctors are wrong. Maybe that
last surgery Dr. W did was the one Joshie needed to be
okay. Yeah, I know, I saw the MRIs we did a few months
ago. I saw the intraoperative pictures from his last brain
surgery. I know what's happening in there. Sometimes it's
just nice to break off from reality & allow myself to
pretend that things could end up being okay.
Popping bubbles. Who knew that required gargantuan
amounts of energy? Oh well. I think instead of being sad,
I will smile & be thankful that Joshua can still pop
bubbles... that he wakes up & grins as he announces he
needs to be changed... that he asks for red Mt. Dew but will
drink Cherry Coke because he can't tell the difference
anymore (narcotics deaden taste buds, so as long as it's
fizzy, he's happy)... that he chatters while playing a game
on the computer and when I ask, "What, Joshie?" he
answers, "Nut-teen. I tot-teen to my-telp." (Nothing. I'm
talking to myself)... that he has a new love for cinnamon
graham crackers spread with chocolate frosting and
"Onwee Maydun do it wight," (Only Megan does it right),
which means I get to laugh as I listen to him beg his big
sister to, "Pweez dit me a gwam pwat-oh wit wots & wots
& wots o' pwa-teen!" (Please get me a graham cracker with
lots & lots & lots of frosting) periodically throughout the
evening. He's a character, my little boy, and while his body
may not have the energy to put into activities anymore, his
personality is still going strong. I recognize that for the gift
it is. With the amount of medication Joshua takes each
day, he could easily be so dopey that he barely talks or he
could be sleeping around the clock, waking for only brief
periods of time, or he could be having major amounts of
apnea and thus far, he isn't. I know he very well could get
to that point (it's predicted he eventually will), but he's not
there today, so I am going to try to continue thanking God
for the good times we get to have with Joshua almost every
day and try to not let the losses that are appearing on an
almost-daily basis get me down (for very long).
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Written September 29, 2012 12:23am by Kate Parker
Good news ~ Joshua is feeling MUCH better! He still has
a gunky cough, but he's not sick like he was and that is a
huge relief.
Bad news ~ He can't walk up or down the stairs anymore. I
think I'd mentioned that he could not walk down, but he
was still able to crawl up. Now he can't do either. One of
the adults has to carry him in a cradle position (one of our
arms wrapped around his back & under his arm and our
other arm tucked under his knees with his body sideways in
front of us) up or down the stairs.
He can't climb up on his bed & he struggles to get off of
it. No, the bed isn't high off the ground. He just can't do it
anymore. I'm not sure why, exactly, but I suspect it has
something to do with his very-tethered spinal cord making
it difficult to lift his leg up.
His head pain can only be brought down to what he
classifies as "medium hurting". The days of pain-free are
long gone and the days of his head hurting "an insy bit"
have also disappeared. Now the goal is to keep it at the
medium level. How Joshua functions with that level of
pain in addition to the amount of narcotics he gets each day
is truly beyond my ability to comprehend.
If doctors are correct, he isn't expected to be here in 13
weeks. Some days, I think the doctors must be wrong
because he seems to be doing okay & I can't imagine him
dying any time soon. Other days, I don't think Joshua will
make it even 13 more weeks. I'm not stuck on a specific
calendar date because I know that the day Joshua dies will
be when God ordained it to be, not when a doctor thinks it
will happen (and there's no way for me to know when that
will actually be), but it is sobering to think there is even a
possibility that I might have only weeks left with my little
boy. It makes me want to hold him every moment of every
day. It makes me wish I could memorize every single
detail of his face and bottle his scent and find some way to
never forget what it feels like to hold his hand & tickle his
belly & how his skin feels under my lips when I kiss his
cheek & how his little arm feels as he wraps it around my
neck to pull me close for a hug every night as I lean over
him to say goodnight.
I am ready for Joshua to not hurt anymore, but I am not
ready for him to die. I know that sounds like a major
contradiction & perhaps it technically is, but my heart
knows what I mean. I am sitting here watching him play a
game at the computer & listening to him chatter to himself
and I just cannot imagine that seat being empty & the room
being silent. I tear up just thinking about it.
How will I live without my Joshiebear? I am so scared of
having to face that future. Just the THOUGHT of it is so
painful... how will I ever get through the actual reality of
living each day without him?
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Written September 27, 2012 12:35am by Kate Parker
I am writing this with some trepidation. I don't want to
offend people, but I can't shake the feeling that this is a post
I am supposed to write. Hopefully, prayerfully, I will be
able to express my heart in a way that others "get" what it
is I am trying to say and won't misunderstand.
I have read many blogs and caringbridge pages of mothers
who have lost a child. The cause of the children's deaths
have been varied - cancer, mitochondrial disease, accidents
or other diseases/conditions - but one thing that each
journal has in common is a post, typically written about 2
to 5 months after the child has died, expressing anger and
frustration and raw pain over the insensitive, albeit wellintentioned, things people have been saying to them. It
stunned me to realize how universal this is -- people not
knowing what to say to a grieving mother or wanting to say
something to fix her sadness, so they say all the wrong
things. To be honest, it really scared me. I know that
probably sounds strange, so let me try to explain.
Imagine that you are going to be forced to join a club that
you have absolutely no desire to be a part of. It is a club
made up of members who hurt every single day with an
open wound created when their child died. Imagine
knowing that even though time will go by, the pain you feel
will never go away and the wound will never really heal
because you can never "get over" the loss of your child,
even though you can (and will) learn to function
again. THEN imagine that while your wound is fresh and
raw, friends and strangers will come up and poke it,
thinking that they are being helpful. Over and over, they
will hurt you and you will be expected to thank them for
caring or to respond graciously or to smile and understand
that they mean well even though your wound is now
throbbing, thanks to their unintentional insensitivity.
Does that sound like something you would look forward to
experiencing? No way! I know it is coming, though, and
there is nothing I can do to escape having to join the club
no one wants to be a member of. But MAYBE there is
something I can do to preempt some of the pain that comes
from insensitive (no matter how well-intentioned)
comments. I am writing about this topic before Joshua dies
with the hope that what I say won’t be disregarded as a
grieving mother’s ranting. I don’t want anyone thinking I
am speaking about them specifically (I promise, I’m not). I
am hoping that writing this journal entry will help not only
me (by making people more aware of what they say to me
after Joshua dies), but also other grieving parents. Maybe
writing this will open people’s eyes and then they will pass
on what they’ve learned to other people, who will then
respond more appropriately to the next grieving mother or
father they meet. Education has to start somewhere, right?
I understand that most people don't know what to say to a
parent whose child has died. I had no idea for a long time,
either, and I’ve said insensitive things & tossed out my
share of well-meaning platitudes, as well. I read on another
grieving woman’s blog (she’d lost her husband) something
that really resonated with me as truth: “I have to remind
myself that they are not trying to hurt me. They are not
trying to make my life miserable or minimize my feelings.
It’s quite the opposite, I think. They are trying to help!
Really! Unless a person was mean and nasty and callous
before your loss, in which case nothing they have to say
should matter, anyway, a friend or family member or
coworker doesn’t suddenly become mean and nasty and
callous overnight. There’s some selfishness, of course, a
sort of “I don’t want to see you in pain so stop it already,
you’re making me feel bad.” There’s clumsiness and
awkwardness. Many of them are dealing with their own
pain over your recent loss. There are no words to help a
grieving person magically feel better, but we are wired as
social creatures to find words for all situations.” I think
that is the crux of the matter. People want to fix a situation,
especially one where pain is involved, so they try to find
words that will help. What I’ve learned is, you can't fix
it. There is nothing you can say that will make it all better,
nothing you can do that will make things go back to the
way they were, so don't try. As such, any comment
beginning with the words "at least" is the WRONG thing to
say.
At least he isn't hurting anymore.
At least you have other children.
At least you have some wonderful memories.
At least you had him for X many years… longer than
anyone expected.
At least he’ll never have to go through anything bad on
earth again.
At least he died peacefully.
At least you got your chance to say goodbye.
Don't say things like that. It is okay to say you are glad a
child is no longer in pain, but temper it with an addendum
like "but I wish he didn't have to die for that to happen."
And as for the whole "be glad you have other kids," type of
comment, what the heck?!?! Like other kids are a backup
for the child who died? Like having other children
somehow eases the pain of losing
one? No. Just...no. Don't say it. To any parent. It is an
awful thing to say. Do you realize that having other
children means not only does a parent have to manage their
own grief, they have to help their other child/ren learn how
to manage theirs! That doesn't make the pain less... it adds
another dimension of pain as the parents watch their other
kids hurt and are helpless to fix it. I understand the
comment is made because people think that when a parent
who loses a child has other kids, they still have something
to live for and it is believed that will help pull them out of
their grief. The truth is, it doesn't. It just means there are
more people hurting from the death of the
child/brother/sister.
Another horrible, no-good, don't EVER say it to any parent
comment is, "S/he is in a better place." I know what you are
thinking -- as a Christ-believing person, surely I agree that
heaven is a better place for everyone! It is perfect and there
is no suffering and no evil and ohmygosh, why would it
NOT bring a mother or father comfort to be reminded that
her precious child is in Paradise? The simple answer is
this: while it is true that heaven is a better place than earth,
no one wants to live without their child. It could be argued
that Hawaii is a better PLACE to live than Oregon, but I
wouldn't want to send my kids to go live there without
me. Heaven is a place, a location, and as parents, we don't
happily send our kids to locations without us on a
permanent basis, so while heaven may technically be a
better place, would you be happy to send your child there
today and live the rest of your life without ever seeing them
again? If not, ask yourself why... after all, it is a better
place, right? Another aspect of the "he's in a better place"
comment that is upsetting is that it leaves parents asking,
"What was wrong with him being here with us?" Telling
someone that their kid is in a better place implies that
where they were living prior to death was not good
enough. Who among us, as parents, wants to be told that
we weren't good enough for our child? Again, I realize the
comment is not said with that intention, but I am telling you
that that is exactly how it is received by a grieving
parent. So just don’t say it if you are trying to be
comforting (or don’t want your head ripped off).
Other comments to avoid:
“I know how you feel.” Unless you have also lost a child,
then no, you don’t. You know how you think you'd feel
and that is not the same. Grief is the most personal and
individual experience any of us go through. It is different
for every person because we all have a unique relationship
with the person who died; therefore, no one else can ever
know how you feel about losing that person.
“When my mom/dad/grandparent/dog died…” Don't try to
compare the loss of a parent, grandparent or, worst of all, a
pet, with the loss of someone's child. It isn't the same and
there is no comparison. Especially in the immediate
aftermath of a child’s death, don’t go on about your
experience when talking to the newly-grieving parents.
Yes, you understand what they are going through, but they
don't want to hear about your child right now. Not that your
child isn't important or your experience would not be
valuable for them to hear, but when their child has just
died, what they want is comfort for THEIR loss, not to
comfort you in yours.
“Everything happens for a reason.” This is true, but there
is a time for everything, as well, and just because
something is true does not mean it is comforting. The
Bible says to weep with those who weep (Romans 12:15),
not toss out platitudes or pithy sayings.
“S/he is an angel now!”
“God needed another angel.”
“Now you have your own angel to watch over you!”
“S/he will be your guardian angel now.”
I realize this one may be really sensitive for a lot of people
because many people refer to their children who have died
as angels, but from what I have read, the vast majority of
parents who have lost children do not feel comforted by
having someone tell them any of the above-listed
statements. Parents don’t want guardian angels; they want
their flesh-and-blood child in their arms. Also, some
parents don’t believe that children get transformed into
angels when they die and therefore any comment alluding
to their child being an angel after death is upsetting on
multiple levels. Unless you know for certain how a parent
feels about this sensitive subject, it’s best to avoid "angel"
comments altogether.
Personally, my family does not believe that human beings
become angels in heaven. The Bible is clear on this
subject. God created the angels & heavenly Host and He
created humans. We are different creatures and Joshua has
as much chance of becoming an angel when he dies as
Molly, our cat, has of becoming a dog. When we humans
die, we get glorified bodies ~ perfect, unmarred, healthy-inevery-way bodies ~ but we don’t become angels. I will
request right now that you please refrain from telling me
that Joshua “earned his wings” when he dies or that he’s
now an angel (guardian or otherwise). I know how
comments like that make me feel now and Joshua hasn’t
died yet. I don’t know if I will respond graciously at all if
someone tells me that he earned his wings or is now an
angel after he has gone to be with Jesus.
A few other comments to NOT say to grieving parents
include the following:
“It's time to move on.” Or “You need to get over
this.” How can you ever get over something that
fundamentally changes who you are and the path of your
life? It’s not for others to determine how much time a
person is allotted to grieve. Don’t distance yourself from
them in the meantime. Try to not judge them if you think
they’re being sad for too long. It is only by God’s grace
that you are not walking the same road and even if you
were, everyone should be allowed to process their pain &
loss at their own pace.
“Your other kids need you.” A grieving parent is aware of
that. This comment isn’t going to encourage them to “feel
better” and function better. It’s going to dump guilt on top
of their pain. Don’t do that to someone who is already
hurting. They don’t need or deserve it.
“Are you over it now?” or “Are you okay now?” The death
of a child is not something a parent “gets over,” so do not
ever ask if they are over it. They will never be “okay” in
the same way they were before their child died, so don’t
expect them to be. Extend grace and understand that losing
their child changed them and they will eventually find their
new normal, but it won’t necessarily look the same as it did
before their child died. Be a friend who is okay with
that. Accept them the way they are now and don’t compare
them to the way they used to be.
“He wouldn't want you to be sad.” or “He would want you
to be happy.” Two more statements that are, at their core,
incredibly selfish. The speaker of such a comment is
uncomfortable by the parent’s sadness; as such, the speaker
wants the parent to stop being sad, so they try to make the
parent cheer up (as though they are deliberately choosing to
be unhappy). It doesn’t work. It DOES upset the parent to
hear such a comment, though.
Saying these kinds of comments can have the same
EMOTIONAL effect on a grieving parent as if you had
coldly told them to "snap out of it" or "get over it
already". In an emotionally-charged situation such as the
death of a child, even words that seem harmless to you
might really hurt the parents. So how do you avoid that
pitfall? Honestly, I think that if you speak from your heart,
a parent will generally recognize the sincerity you are
trying to convey and then, even if the words aren't perfect,
they’ll understand what your intention was and that makes
it easier to overlook any "imperfection" in the comment.
Please do not avoid mentioning the death of a child out of
fear of saying the wrong thing. I understand you don’t
want to hurt the parents, but it won’t hurt them to hear their
child’s name on your lips. It WILL hurt them to have a
friend ignore their loss as though it never happened,
though.
Possibly the biggest well-intentioned-but-totally-nothelpful comment is “Call me if you need anything!" I
realize that this one is said with the utmost sincerity, but I
want everyone to take a minute to really THINK about the
situation where this comment is made so they will
understand why it is not a helpful thing to say to a grieving
parent. Okay, picture this: your child has died. There are
people to call, funeral plans to make, a funeral to get
through, other children to take care of, and life will
continue on (even though it feels like it has stopped for the
grieving family) ~ meaning, bills still need to be paid,
groceries still need to be bought, kids still need to be fed
multiple times each day, laundry still needs to be done,
etc. It is hugely overwhelming to a family that has just
suffered the death of a loved one. Then people start saying,
“Call me if you need anything!” Really? What are you
offering? Do you really mean ANYTHING or are there
limits to what you can actually do to help? By and large,
grieving parents don’t take people up on their vague
offer. When you feel overwhelmed, the idea of calling
someone for help can be exhausting, especially when you
don’t know if the person actually meant what they said or if
you’re afraid of putting someone “on the spot” by calling
them with a specific request that they may not want or be
able to fulfill. Not knowing the boundaries of what is
offered can lead to people feeling awkward, which is
something human beings tend to try to avoid. As such,
making the “call if you need anything,” offer isn’t really
very helpful.
Instead of tossing out a general offer for help and relying
on the grieving parents to call you, make concrete, specific
offers and be willing to reach out rather than waiting for a
phone call. Some examples:
“Can I come over on Thursday to help with laundry?”
“We’d like to buy your family dinner on Tuesday. Would
you like Chinese food, pizza or Subway sandwiches?”
“I will call tomorrow to check in on you. If you don’t feel
like talking, let your machine take my message. It’s okay if
you don’t want to talk.”
“Would you like me to take your kids to the park/out for ice
cream/to a movie? I could take them out on Monday after
school.”
“Can I come by on Wednesday afternoon around 2? If you
have anything that needs to be done around the house, like
dishes or laundry or vacuuming, I’d like to help.”
“I am going grocery shopping on Saturday. If you give me
a list, I will shop for your family, too.”
Offer what service you are willing to do and then take the
initiative to follow up with your friend. THAT is helpful
and it takes the burden of remembering which friend is
willing to do what out of the grief-stricken person’s hands.
Proverbs 25:20 says “Like one who takes away a garment
on a cold day, or like vinegar poured on a wound, is one
who sings songs to a heavy heart.” Words that minimize a
person’s pain are hurtful, especially to the heart of a
grieving parent. Instead, come alongside a grieving parent
(literally or figuratively)… offer a hug, a shoulder to cry
on, and your time. Be willing to hurt with them, to be silent
if needed, to fight against the urge to throw out words just
to fill the void, to cry with them or to be okay with hearing
them cry. Let the parent be silent if they need to. Let the
parent talk if they want to. Listen and respond in a way
that validates their feelings. Find tangible ways to help
them in the months that follow the death of their
child. Share your memories of their child. Talk about their
child ~ as Elizabeth Edwards said, “If you know someone
who has lost a child or lost anybody who's important to
them, and you're afraid to mention them because you think
you might make them sad by reminding them that they
died, they didn't forget they died. You're not reminding
them. What you're reminding them of is that you remember
that they lived, and that's a great, great gift.”
The best thing you can do is recognize the loss (“I’m
sorry,” “My heart is broken with yours,” “I will miss
__(name of child)___ so much!”). If you don’t know what
to say, be honest and say that! It’s okay to tell a grieving
parent something along the lines of, “I don’t know what to
say, but I want you to know I care and I hurt with you.”
Speaking honestly from your heart in a way that affirms the
loss and recognizes the family’s pain is a good approach
since it is unlikely that you use platitudes as a regular part
of your daily speech, so you’re less likely to resort to such
comments that will come across as insensitive.
In conclusion, I want to reiterate that I fully recognize that
most people do not intend to hurt a grieving parent with
their comments. I know that it’s important for the grieving
parent to not be oversensitive to things said to them and to
not hold a grudge against people just because they didn’t
say the perfect thing. I know that the most important thing
is recognizing that when people reach out after a death,
they are doing so because they care. And at the end of the
day, I would rather have someone say something "stupid"
to me than not say anything at all.
After all of the research I did on this topic in preparation of
writing this today, I came here to Joshua’s CB page & read
the guestbook comments and was filled with gratitude that
God has surrounded me with so many people who
inherently seem to know the right things to say when I
share the ache in my heart. As such, this journal entry may
seem pointless to a lot of you who think, “Well, duh! This
goes without saying!” Unfortunately, though it should be
common knowledge (after all, millions of children die
every year & leave grieving parents behind), it isn’t. If you
google “stupid things people say after the death of a child,”
you’ll see what I mean. I believe it is valuable to help
people realize how their words can impact a family that has
suffered a loss AND to help educate people about
appropriate “etiquette” in the aftermath of a death. Maybe
it will result in fewer parents being unintentionally hurt by
the people who care about them and in grieving families
getting more of the support that they need in ways that are
truly helpful, which would be a win-win situation all
around.
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Written September 26, 2012 1:03am by Kate Parker
I only have a minute for a quick update, but would really
appreciate prayers for Joshua. He has gotten sick with the
same bug his brothers & sisters have had over the past
week. For the other kids, it's been a couple of days with a
sore throat followed by about 24 hours of vomiting, another
24 hours of feeling nauseated but not throwing up, then 24
hours of not feeling nauseated, but also not really wanting
to eat. Then they bounce back and are okay except for a
super-stuffy nose & phlegmy (is that even a word? LOL)
cough. Isaac was the first kid to go down with this 9 days
ago and he is still coughing/sniffly, so this bug hangs on for
awhile even though the *bad* part of it is only about 48-72
hours.
Anyway, Joshua got hit hard yesterday. We've upped his
anti-nausea medication in an effort to prevent vomiting. If
he throws up, he'll get admitted to the hospital because we
can't afford to not have a way to get water, nutrition &
medication into him, so he'd have to be switched to IV stuff
for a few days. Thus far, the increase in medication is
working. He's been nauseated, but nothing has come up
(thank you, Lord).
In my house, we're praying that Joshua will get over this
illness swiftly & without any sign of further decline as a
result of having been sick. If you want to pray something
similar, my family would appreciate that a lot.
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Written September 23, 2012 11:43pm by Kate Parker
Yesterday, I had to take Bethany to see our pediatrician
because the incision where her port-a-cath was put in
almost 4 weeks ago had split apart again despite having
been stitched closed a week earlier when it had split apart
the first time (due to her poor wound healing). After we
finished taking care of Bethany, Dr. S asked how Joshua
was doing. This is a typical exchange any time I have
Bethany in to see the ped just because she doesn't see
Joshua nearly as often but likes to keep tabs on what's
going on with him; yesterday, however, Dr. S had time to
sit down and really talk to me (the benefit of seeing her
when she's on-call for the weekend), so we took advantage
of that.
We discussed Joshua's latest symptoms showing decline,
which led to questions about the amount of apnea &
bradycardia he has each day. I reported that the only time I
have him hooked up to the pulse ox is at night and for the
first hour after going to sleep, he desats frequently, with
accompanying bradycardia (slow heart rate), but he
typically does pretty well the rest of the night, with only
sporadic triggering of the alarm. Remember that I keep the
parameters set pretty low at night (80% for oxygen and 40
for heart rate), so he has to have a fairly significant episode
of apnea or bradycardia to get my attention. I also told her
that I sometimes do "spot checks" during the day when he
turns very gray and during those episodes, his oxygen level
is very low & his heart rate will be in the 30's. She nodded,
not surprised by my words. What both Dr. S and I find
amazing is that Joshua is obviously declining, yet he's not
having huge amounts of significant apnea & bradycardia
yet. She expects that to change, but it's kind of incredible
that it hasn't yet. We agreed that Dr. W did an impressive
job of getting his brain moved away from his brain stem
last November, and the VP shunt is obviously helping since
it drains off some of the excess cerebrospinal fluid that
would otherwise accumulate & increase pressure inside
Joshua's head. The shunt has definitely slowed down the
decline, but nothing will slow the deterioration of his brain
stem and that is why the apnea & bradycardia will get
worse as time goes on.
We moved on to discussing Joshua's increasing "urpiness"
~ he gets close to throwing up but keeps it down ~ and how
we'll manage that if he stops being able to tolerate food &
fluids through his g-tube, which would be to switch
everything to IV through his central line. Since there is no
IV oxycodone, we'd switch Joshua to fentanyl & enlist Dr.
T's (palliative care doc) help in determining the dosage
conversion. I said I really hoped to avoid having to go this
route and Dr. S immediately understood ~ fentanyl
dramatically increases Joshua's sleepiness, and at the dose
he would need, he would probably be pretty much snowed
and sleeping all the time. Our conversation then segued into
territory we've not explored before, but Dr. S had
seemingly been waiting for the opportunity to bring up,
which she did in a very gentle & kind manner.
"Kate, if it happens that we have to medicate Joshua to the
point he is sleeping all the time & not waking up, we will
have to make some decisions."
"Oh. Okay," I tried to figure out where Dr. S was going
with this train of thought, then asked, "Yeah... what do we
do if he needs so much pain medication that he doesn't
wake up, but he's not having apnea to the point he stops
breathing on his own? That would be awful... watching
him sleep around the clock and having him not wake up
anymore."
Dr. S agreed with me, then very quietly explained that if
this scenario does occur, where Joshua is sleeping around
the clock without waking as a result of his need for pain
medication at a dosage that snows him, what will happen is
that we would slowly reduce the amount of narcotic he's
getting to bring him to a level where he is conscious again
and then we would evaluate how he does. If he can
manage with the lower dose of pain meds, then we'd keep
him at the lower dose and enjoy the time that he's awake
and interactive. If he was in horrible pain and absolutely
needed the higher dosing of medication, we would give it
to him, knowing the result would be that he would not
wake up again. She said that there is a very, very, very fine
line that needs to be walked when medicating a child at the
end of life, balancing between controlling pain & watching
how it affects their respiratory function, but if we've tested
Joshua and confirmed that he could not be okay on a lower
dose of narcotic that would allow him to also stay awake,
we can give him a larger dose of narcotic to ensure he is
kept pain-free as we wait for his respiratory function to
cease.
I know some people may read that and gasp and think we
are advocating euthanizing Joshua, but that is absolutely
not true. It's simply the cold, hard fact of dealing with endstage terminal illness and it is incredibly horrible to have to
talk about with regards to your 6 year old child. Above all
else, we want to keep Joshua comfortable, even if that
means that to do so will cause him to stop breathing. If the
alternative is to give less medication which would result in
him being in horrible pain but allow him to continue
breathing, well.... that's not really a great alternative and
why would we do that to him? It's not like he would be
able to enjoy life in that condition and at that point, we'd
just be delaying the inevitable.
Dr. S told me she is hoping that the above-described
scenario does not happen. She launched into a story about
a friend whose dog was very old and I interrupted to ask,
"Are you going to compare the loss of a child with the
death of a dog? Really?" She quickly assured me that no,
she was not... she said she would never compare the two
because there is absolutely no comparison! "But," she said,
"I want to share this story with you." So I leaned against
the exam table while I listened to her tell me about how her
friend's dog was very old & they (friend & her spouse)
were sure he would die soon, but he didn't, and then he
finally got very sick & they reluctantly made plans one
Saturday to put the dog to sleep on Monday. That Sunday,
the dog woke up, had a good breakfast, walked out to the
garden, laid down & died. Dr. S finished telling me the
story, then sighed heavily and told me that what she wanted
so badly for Joshua was for him to have a really good day
with the family before going to sleep for the night & simply
passing away peacefully without ever waking or having any
struggle whatsoever. She wants him to "have a good
breakfast & go out to the garden." I solemnly agreed with
her, saying that all Charley, Megan, Adam, Emily & I
wanted was for Joshua to die peacefully, as well (the
younger kids haven't really talked in specifics about
Joshua's death & we respect that and don't try to give any
more information than they need or want). We know it
won't be easy for us, but we desperately want it to be easy
for Joshua. No struggle. No pain. No fear for him at
all. That is our prayer. Well, that & that God will allow
both parents and the 3 oldest kids to be present when
Joshua breathes his last. We realize it will happen as God
has ordained, but the Bible says to make our requests
known to God (Philippians 4:6), so that is what we are
doing. I shared this with Dr. S and she nodded in
agreement, then reached out to rub my arm in a comforting
manner for a moment before hugging me. She suggested
that we not make any specific plans, but rather, just let
things happen as they're going to happen & we can make
decisions as the need for them arises. I agreed that was a
good strategy and said that now that I knew the basic plan
if this particular scenario occurs (the need for IV meds that
knock Joshua out), I don't need to think about it anymore
(and yep, I will do my best to not dwell on it unless the
situation comes up where I have to face it).
The last thing we spoke of pertained to milestones. Dr. S
said, "Sixteen months ago, we sat down together and one of
the things I recommended was looking at milestones that
we could aim for ~ things like birthdays and Thanksgiving
and Christmas. He's reached a lot more milestones than we
thought possible back then, hasn't he?" I smiled and agreed
that yeah, he really has. Dr. S went on, saying how this
past year has truly been a gift since Dr. W had thought
Joshua would die during the surgery that she did last
winter. I nodded my agreement with that statement,
knowing it was true & that if it weren't for God blessing Dr.
W with the skill that she displayed last November, there is
no way Joshua would still be here. Then Dr. S took a deep
breath and paused for a moment before slowly and
carefully saying, "Kate, I think that from now on, we
should not look at milestones anymore. I think we should
focus on the milestones Joshua has met this year and not on
the milestones that we would like to see him meet. Let's
not focus on whether he makes it to Thanksgiving or
Christmas. I don't want you and Charley and the rest of the
family to be brokenhearted if he doesn't make it to a
milestone. I've seen it happen with other families, where
the parents cry, 'He didn't make it to Christmas!' and I don't
want that to happen here. So let's all focus on all the
milestones Joshua HAS reached this year instead of future
milestones. How does that sound?"
How did it sound? Awful, actually. It felt gut-wrenching
because it sounded like our trusted pediatrician was telling
me that she does not believe Joshua will live much
longer. But because I don't disagree with her, I answered
her question with a quiet, "Yeah, that's a good
idea." Truthfully, I know it won't matter whether I focus on
future milestones or not. Regardless of when Joshua dies, I
will always think, "I wish he had been here," whenever a
birthday or holiday comes around. But I can appreciate the
wisdom of not getting attached to a particular milestone or
date in my mind because my devastation would be
increased by the psychological blow of realizing he did not
make it to that special day.
Dr. S & I hugged again and she told me she was really glad
we had both had time to sit down and talk the way we had
done that afternoon. She said that as time goes on, she
thinks we should have these kinds of talks more often and
that if I ever need to talk about things like this with her, I
can call her cell. I won't take advantage of having her
number (I've had it for over a year and have called her only
twice ~ once to return a call she'd made to me and the
second time when we thought Joshua was dying), but her
offer touched my heart and I appreciated it.
*sigh*
In other, related news, Adam talked to Joshua and told his
youngest brother, his best friend, that it was okay if he (J)
needed to go to heaven before Faith & his wedding. Adam
told me about their conversation this past Friday, saying
that he doesn't think Joshua will be able to hold on until
March. HUGE admission for my oldest son, and hearing
that he has accepted that Joshua is not doing well was
physically painful for me because I know how fervently
Adam has been praying for God to make a way for Faith to
get here sooner so that Joshua could be the best man at their
wedding (Faith cries on Skype when she talks about how
sad she is that she may never get to hug Joshua in person)
and I know how difficult it has been for Adam to admit that
God's will for Joshua may not be to heal him on earth.
I don't know how to end this journal entry, so I'll simply
take a minute to tell you all how sincerely grateful I am for
the prayer support and words of encouragement and love
that you share with me in the guestbook. Your comments
have buoyed me and helped keep me afloat on days when
my strongest inclination is to lock myself in a room & cry
until I drown. Thank you for that. Truly, I don't think I
will ever be able to express how much I appreciate
knowing that so many of you care.
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Written September 23, 2012 1:27pm by Kate Parker
No beach trip today. Joshua woke & said he doesn't feel
good enough to go. Since this is something he really
wanted to do, having him say that he doesn't want to do it
today because he doesn't feel well is something we're
taking seriously & trusting him on. He will know when
he's "up" for the trip & it's my plan to take him whenever
the day arrives that he can manage it. It doesn't make my
heart hurt any less knowing he isn't feeling well enough to
do it today, but I'm not giving up hope that he'll be able to
get to the beach one more time.
He needs help getting up & down the stairs now. He can
crawl up the stairs with minimal boosting, but he needs to
be carried down.
His understanding of some words is being lost. For
example, the word "behind" no longer makes sense to
him. If he asks where a toy is and we tell him it's behind
him, he stares at us. If we say, "Joshie, look behind you,"
he looks down at the ground in front and to the side, but
does not turn around. We have to physically turn his body
to show him where the toy is at. I asked him to stand
behind Bethany (he was standing beside her) and he did not
understand what I wanted. We're seeing this happen with
more words.
His voice is a lot more hoarse than it's been. Historically,
hoarseness has been related to his chiari & has been a sign
that it's time to do more surgery. That isn't an option
anymore, though, so the hoarseness is noted & we try to
just go on.
Dr. S (ped) and I had a long talk about Joshua
yesterday. I'll write about it later today when I have more
uninterrupted time. It was one of those emotionallydraining, hard-to-hear-but-necessary-so-it-was-good-wehad-the-talk kind of conversation. The kind that leaves me
feeling exhausted, but thankful that Joshua's doctor cares so
much about my little boy.
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Written September 20, 2012 4:53pm by Kate Parker
Got Joshua's updated POLST (Physician's Orders for LifeSustaining Treatment) form in the mail last week. There's
something about seeing "Do Not Resuscitate/Allow Natural
Death" and "Comfort Measures Only" written out that is
sobering. Seeing it in black & white made my heart sad. I
know it doesn't change anything. I realize that it's just a
piece of paper. I can't explain why it upset me. It just did.
Another thing that made me sad today was realizing that
Joshua's ability to count is now limited to #1 through 5,
with a need for prompting at #4. Watching a child lose
cognitive function is awful.
He is always tired now. Always. He 'cuggles' with me at
random times throughout the day, telling me he's tired and
needs to rest. He fights against taking naps & actually
going to sleep, though, and tries to push himself through his
fatigue (with mixed results). He needs multiple doses of
extra medication for breakthrough pain every day. His
activity is limited. He has told Charley & me that he would
like to go to the beach "one more time". We are going to
take him this weekend (it's a 90 minute drive). Please pray
for a good day for him so he can enjoy the ocean and the
sand one more time.......... just the thought of it being the
last time we get to do this with Joshua hurts my heart.
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Written September 16, 2012 8:09pm by Kate Parker
Last night, Adam carried Joshua upstairs to bed & helped
me get him situated with his fluids hooked up, night diaper
on, teeth brushed, stuffed animals arranged just so, "heavy
breather" turned on (the nickname for his oxygen
concentrator) & tucked in with his blankets. I listened to
the brothers go through their nightly "goodnight routine,"
then Adam told Joshua, "Thanks for sticking around for my
birthday. Are you going to stick around for my
wedding?" Joshua answered, "Yes." Adam asked, "You're
going to be my best man?" The answer? "Yes, 'cuz I is
going to carry the rings. That is the most important job!" I
laughed & agreed with him that yes, definitely, the person
who holds the rings is the most important person in a
wedding. Adam grinned, agreed, and then, satisfied that all
was well, gave his baby brother another hug & kiss, told
me 'good night,' and left the room.
Joshie curled up against me so I could wrap my arm around
him. I kissed his cheek, then told him, "It's okay if you can't
stay for Adam's wedding, Baby." He nodded & said
confidently, "I know." I added, "If Jesus tells you it's time
for us to go to heaven, then it's okay." Joshua replied
thoughtfully, "I think I will be going before
you." "Really?" I was surprised by that. Not because I
actually believed I'd die when Joshua does, but because he
has been holding on to the belief that our entire family
would go to heaven at the same time. I asked him, "You're
going to go to heaven before me?" He matter-of-factly
affirmed, "Yes. I will go first. Then I will send you
butterflies." I hugged him closer & told him I will really
like that. Then I thought I should reassure him, so I said,
"You know I'll be coming to heaven, too, right? Like when
I take Bethany to the hospital & I'm gone for a day, but
then I come back and we see each other again... it'll be like
that. You won't see me for a little bit, but then I'll come to
heaven, too, and I will see you again." Joshua answered,
"Yes, I know. I'll be there and I will wait for you." I said,
"But I won't be able to call you like I do now when I'm
gone. You know, how I call to check in and make sure
you're doing okay?" Joshua told me, "That's why I will
send butterflies. Butterflies will tell you that I am doing
fine and I love you."
That he understood and was okay with the idea of going to
heaven alone really surprised me. Then he took our
conversation to a new level & truly blew me out of the
water.
"Your daddy wants to see you," Joshua said this in the
same tone I might tell the kids that dinner is ready ~ casual
& unconcerned.
"What?!?" was my stunned response.
"Your daddy wants to see you. I will tell him you love him.
Then you can tell him when you come to heaven, too." All
of this was delivered in a quiet, confident voice.
"Joshie, I would love for you to tell my daddy I love him. I
want to see him, too, but he is going to be so happy to meet
you!"
I couldn't see my little boy's smile, but I could hear it in his
voice when he replied, "He is going to love me!"
"Yes, he is. You're so right about that!" I hugged Joshua
close, amazed by what he'd said. Since my dad died in
1993 and Charley's father died six months later in 1994, my
kids have not grown up with grandpas & the little kids don't
have any memory of their grandfathers at all. As such,
hearing Joshua mention my dad and telling me he'd pass a
message to my dad from me was mind-blowing. It brings
me comfort to think that my dad will hang out with Joshua
and keep him company until the rest of our family joins
them in heaven. I believe God gave Joshua the knowledge
that he won't be alone in heaven so that he won't be scared.
I also believe He wanted me to remember that there are
people I love who are in heaven who will be with
Joshua. My little boy won't be alone as he waits for the rest
of his family to join him for eternity. What an incredible
reminder & reassurance from the Lord!
Just as I was about to fall asleep, I heard a quiet but
insistent, "Mama!" I jolted into full consciousness to ask,
"What, Joshie?"
"I'm having trouble breathing."
"Do you want your pulse ox on?" I asked, knowing that for
some reason, Joshua thinks the pulse ox helps when he's
having lots of apnea. He wants me to know if he's not
breathing because he thinks I will be able to make him
breathe again. Oftentimes, the blaring alarm does startle
him when he's sleeping, which is enough (for now) to
stimulate him to inhale again.
"Yes," came the reply, so I sat up, reached to the end of the
bed & grabbed the sensor to attach to his finger. After
turning the pulse ox on, I watched to see the numbers come
up before laying back down & wrapping my arm around
Joshua once more. As I did, I whispered, "Your numbers
are good, Baby. You're breathing really well right
now." He sucked in a deep breath & I felt him nod his head
in agreement, but there was still tension in his little body,
so I lifted myself up on my elbow so I could lean over
enough to speak directly into his ear. "Joshie, you're
okay. I am right here and I will always be here to take care
of you. Nothing bad is going to happen, okay? I'm not
going to leave you. You will never be alone. I
promise." As soon as I finished, a little arm reached up and
wrapped around my neck for a hug. I kissed his warm, soft
little cheek, told him, "I love you forever, Joshie," and he
squeezed my neck as he sleepily promised me back, "I love
you forever, too, Mama." Then, relaxed, he snuggled under
the covers, closed his eyes & went to sleep.
It was a conversation that left me convinced Joshua is
hearing the voice of God speaking to him. More & more, I
believe the Lord is preparing my little boy's heart to be
ready and okay to leave our family to join Him in
heaven. The gratefulness I feel for the mercy of God being
extended toward Joshua (and me) is matched by the depth
of sadness I feel at knowing time is growing short. Nothing
will make the pain go away, but it is very comforting to
know that the Creator of the Universe cares so deeply that
He is speaking words of peace and acceptance into a 6 year
old and making a way for reassurance to be found by that
child's mother in a situation where the only emotion you
might think would be felt is hopelessness.
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Written September 15, 2012 4:58pm by Kate Parker
Today, September 15th, is
three of Joshua's siblings' birthday. Adam is now 20,
David is 11 & so is his twin sister, Sarah. Joshua made
them each a special gift (with a little help from his big
sister, Megan, & his mama) since this will probably be the
last birthday he gets to spend on Earth with Adam, David &
Sarah. They turned out to be *so* perfect ~ Joshua's
handprints & footprints in each sibling's favorite color, a
couple special quotes, a picture of Joshua with each sibling,
the whole thing framed and a sweet message to the
recipient from Joshua on the back (I wrote word-for-word
what he told me to put there). Adam choked up after
unwrapping his and both David & Sarah got teary-eyed,
too. Joshua was quite happy that his gifts were so wellreceived. He was oblivious to the tears shed by those
around him.
Last night before we went to sleep, I leaned over to kiss
Joshua & he told me, "Tomorrow is Adam's birthday and
Sarah's birthday and David's birthday!" I confirmed, "Yep,
it is. Are you excited for their party?" He gave a tiny grin
& told me in a very satisfied voice, "Yes. I wait for Adam's
birthday. I wanted tell Adam 'happy birthday'." When I
shared this conversation with Adam today, he smiled &
looked over at his baby brother, reached his arm out to
poke Joshie's foot and asked, "You didn't want to go to
heaven before my birthday, Buddy?" Joshua grinned back
at his hero big brother & agreed with a smile, "Yeah." No
one asked me, but I'm thinking that was a pretty fantastic
birthday present in Adam's eyes.
Yes, Joshua loves his other siblings, but he & Adam have
always had a special bond and a precious, sweet
relationship and it shows. Despite their 13.5 year age
difference, Adam calls Joshua his best friend and Joshua is
sure the sun rises & sets because Adam tells it to. It is a
friendship... a love... that amazes and blesses all who have
watched the two together through the years. And honestly,
I really do believe that if a person can *will* themselves to
live, Joshua is going to do it just to stay long enough to be
the best man in Adam & Faith's wedding in the spring. :) I
don't know whether he can do it, but I know he'll try simply
because there really isn't anything Joshua wouldn't do for
his biggest brother. It's a love that goes both ways, for
sure.
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Written September 11, 2012 11:56pm by Kate Parker
It's kind of sad when Joshua
wakes for the day at 3pm, then falls asleep on the couch,
sitting up, a little before 8pm. At least those 4.5 hours were
happy ones. *sigh*
Not every day is this short, but the amount of time he's
awake is less overall than a month ago. I know that's to be
expected. He's continuing to slide downhill & we jacked
up his oxycodone by a little over 60% two weeks ago, so of
course he's going to sleep more. Knowing why it's
happening doesn't make it any less sad. Of course, I'm
happy that his pain is under decent control again (it never
goes away completely, but we can keep it
manageable). That remains a true blessing and I thank God
for it.
Yesterday, Joshua was 'cuggling' in the recliner with me
and I asked how he was feeling. He said he was good,
except his head still hurt. I asked if he needed medicine &
he answered, "No. There's only one thing that can
help." Curious, I asked what that was. "We could fix my
head and my back. Then my head wouldn't hurt at
all." That was a punch in the gut. I quietly told Joshua,
"Baby, we can't fix your head." He emphatically
responded, "YOU can't, but Dr. W can!" I shook my head
and said, "No, she can't. She can't fix your head or your
back anymore." He wanted to know why not & I explained
that there was too much yucky stuff in his head now. He
wanted to know what would happen if Dr. W tried to fix
it. I told him simply, "You would die." Joshie thought that
for a full minute, then replied, "Oh." I asked him, "Do you
WANT Dr. W to try to fix your head? I thought you didn't
want any more surgery." He answered with a dejected
tone, "It doesn't matter. She can't do it anyway." That hurt
my heart, but I pressed on, needing to know. "Joshua,
you're right. She can't. But did you WANT her to?" He
was quiet for a moment before replying, "I just want my
head to feel better."
After medicating him, I sat with Joshua in my lap once
more and we chatted about how heaven will be wonderful
because then his head and back will be all fixed for
good. We discussed how God will fix everything so that he
never hurts ever again. I promised him his head would not
hurt even the tiniest insy bit. Joshie believed me, but I
could hear in his voice that he couldn't imagine not hurting
at all and that brought tears to my eyes. How is it possible
that this little boy is so accustomed to pain that he can't
remember what it feels like to NOT hurt? Oh Lord, as
much as it will tear me apart to lose him, please show
mercy to Joshua... don't extend his life if You aren't going
to heal him here on Earth of the pain that goes along with
his current existence. I hate seeing him in pain that I can't
eliminate. It's the most awful thing & it's an everyday
occurrence for him now.
This is a huge emotional roller coaster. The ups when
Joshua is playful & chatty & laughing as he enjoys
something followed by the downs when he is pale &
sweaty & hurting terribly. It takes a toll on him & every
other member of our family.
I'm really worn out. The past few weeks have been hard,
not just with Joshua, but with his little sister, as well. Now
we're home & starting school & that, too, brings an
emotional pang since I *should* be teaching Joshua this
year, too. I wish I was. I wish he was able to do even basic
preschool work, but he can't anymore. I try to not spend
much time really *thinking* about that... about the
cognitive losses Joshua has experienced. He was a little
boy who was clever enough to delete items off his siblings'
accounts on the computer & then, when they implemented
a login in order to access their account, Joshua would
watch them type their passwords and memorize what keys
to hit so he could log in and thus still gain access to
everyone's pages! Charley & I would laugh so hard
listening to Adam lecture his baby brother, saying with
exasperation, "JOSHUA! STOP typing my
passwords!" Adam would change his password over &
over and Joshua would gleefully memorize it, no matter
how long it was, and type it so he could get into Adam's
account. I think he loved the challenge. He was such a
bright little guy when he was younger, which makes
watching him lose cognitive function now so intensely sad.
A few years ago, I had purchased some curriculum for
Joshua in anticipation of beginning school with him. I
found those books while getting things ready for Emily,
David, Sarah & Isaac's upcoming school year and there I
sat in the hallway, pulling the books that my little boy
would never use out of the bookshelf, tears coursing down
my face. So many things I have missed out on with
Joshua... so many things I will miss out on in the
future. Sometimes the magnitude of loss leaves me feeling
suffocated. Sometimes it all just hurts too much.
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Written September 6, 2012 8:34pm by Kate Parker
*whispering so as not to alert the jinx monster*
Joshua has been much more comfortable with his new pain
medication dose/regimen. He's only needed 1 breakthrough
dose today (last week, he was getting 12-14 per day). I am
feeling so, so thankful that Dr. T once again came up with
an answer to get Joshie back in a good place.
He's more tired. He doesn't walk much ~ instead, he pushes
himself around in his wheelchair because he says his legs
are tired. I think his balance has gotten worse & the
increased narcotics are contributing to his difficulty with
walking, but it's okay (sincerely). That's what his wheels
are for!
To hear his laughter once again bubbling up is such a
precious, wonderful gift. Thanking God for where we're at
with Joshua today. Praying we can stay in this place of
"good" for awhile.
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Written September 3, 2012 10:47am by Kate Parker
This morning, I realized something. I will never be ready
for Joshua to die. I will never be ready to live life without
him. But I am getting to the place where I am ready for this
to end. His pain. His difficulty with breathing. The slow,
inexorable march toward an end that I would change in an
instant if I could, but no longer wish to postpone as long as
possible since I can't.
Please hear my heart clearly on this: I am not saying I
want Joshua to die. I am not saying I'm tired of dealing
with him and just want this to be over with. That is NOT at
all how I feel, nor are those thoughts that EVER go through
my mind! No... I'm simply saying that the balance has
tipped and I see clearly that Joshua's life is now harder &
more painful & less... good... for him and that no matter
what any of us does to try & improve things, it's not
happening. As such, I'm not begging God to give us more
time. Asking for that would be cruel to Joshua. It would
be selfish of me. More time isn't going to make anything
better for him. It will just mean more days or weeks or
months of pain while we scramble to try & alleviate it to
the best of our ability but never fully succeed. He
hurts. We hurt. There is no way to make it okay
anymore. Peace for Joshua will only come when he closes
his eyes to life here and goes to be with Jesus. I understand
that now in a way I haven't before.
Joshua still smiles. He still laughs. He still finds
enjoyment in playing games on his iPad. He still asks me
to "cuggle wis him". But his smiles & laughs get cut short
by announcements that his head hurts "a wot" and requests
for “wots of medcin,” he has to pause while playing games
on the iPad to catch his breath, and he spends most of his
awake time either in his wheelchair or laying down
because, as he has explained to us, his legs are tired so he
can't walk well anymore. In other words, even the things
that are still good are becoming affected by his
deteriorating brain stem. It is heartbreaking. There’s just
no other word to describe it.
I don't want Joshua to die. Just thinking about him dying &
my having to live without him makes my chest tight &
tears come to my eyes. But watching him hurt, watching
him struggle to yawn, listening to him sharply inhale over
& over & over all day long as he works to get enough
oxygen and seeing him being unable to do 98% of the
things he used to do with ease is so sad. This has to end
sometime. It will end in God's time& I understand that. I
will not do anything to hasten Joshua's death, but I won't do
anything to extend it, either. I don't wish for him to
experience one extra day of pain. However many days God
has ordained for him is all I want. My days of begging God
to let me keep Joshua longer are over. They have to be. I
can't ask God to prolong the life of my child who is no
longer truly living. As much as it will tear me to pieces to
lose his physical presence, I have to believe there will be a
measure of peace in knowing that once he is with Jesus,
Joshua will be whole & healthy… he will breathe perfectly
and have strong legs and, most importantly, not one ounce
of pain ever again. I want that for him. How desperately I
wish it could happen here, though, and how deep is my
anguish in knowing it can’t.
*deep breath*
Just the days You have numbered for him, Lord. Not
more. Not less. And please grant Charley, the kids &
myself the ability to truly, TRULY enjoy every single good
moment & stretch of time that Joshua experiences. Let us
live these days with Joshua to the fullest extent possible so
that there are no regrets for any of us when the day comes
that You say, “It’s time to go, Joshua.” Lord, let us greet
that day with not only sadness, but also thankfulness that
because of your mercy, our little boy will hurt no more, and
please help us to hold on to the promises that we will see
him again and our joy will be complete because we will all
be together with You.
Amen.
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Written August 31, 2012 4:09pm by Kate Parker
Dr. T increased Joshua's oxycodone again (last increase
was 48 hours ago). When I heard the amount he wants me
giving Joshua & hesitated before saying, "Okay," Dr. T
very seriously told me, "Kate, you are going to have to trust
me." *gulp* I do trust him. I just don't want to completely
snow Joshua with pain meds. I'll admit it; I'm not ready for
that to happen.
I am incredibly sad at how fast things are changing with
Joshua and I am praying God grants us another "plateau"
period to semi-slow this downward track we're on. I am
truly hoping & praying that the difficulty he is having now
will ease some once he's home again and back in his
regular routines.
I want to thank everyone who is praying for Joshua,
Bethany & the rest of my family. As I wrote on a friend's
Facebook wall, I'm feeling better (antibiotics are kicking
in), though tired, and I can truly feel the prayers of
everyone supporting me through the days. I don't know
how to put it into words, but despite being incredibly sad
because Joshua is struggling so much alternating with
happiness at how well Bethany is doing post-operatively, I
also feel very peaceful. I know God is right here, in
complete control, and His timing is perfect, so for whatever
reason this is all happening simultaneously, it IS for His
purpose and He'll use it for good. That is what I'm holding
on to
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Written August 30, 2012 12:01pm by Kate Parker
I guess now's a good time to talk about my appointment
with Dr. T yesterday since I can type uninterrupted as I sit
here in the waiting area while Bethany has surgery.
I went into the meeting with a typed list of questions to ask.
I handed the list to Dr. T & he read them, then said, "Ah,
the list of unanswerable questions." I smiled a little and
said, "Yeah, I'm good at those, huh?" He nodded & agreed
that yep, I sure was. That was the end of the joking; then
we got down to business.
On my list, I had asked what we might expect to see as
Joshua nears the end of his life. I wanted to know if there
were any "landmarks" that could be pointed out that would
give us a clue that the end was near. I asked about changing
Joshua to a PCA pump and TPN if he gets to the point
where he can't tolerate tube feeds & fluids given via g-tube.
I asked about changing his meds to something different to
try and lessen the sedation effects we're seeing.
Dr. T told me that he couldn't give me landmarks because
there haven't been any other kids with Joshua's condition &
Joshua's always done things his own way, anyhow, so even
if he (Dr. T) tried to guess, he'd probably be wrong. Then
he went on to say that in his experience, at the end of life,
kids generally hit "critical mass" & then accelerate quickly
downhill. He would not venture to guess what "critical
mass" might look like for Joshua ~ what event or series of
events would precipitate the end. He did say he anticipates
that we will see more & more signs/symptoms of brain
stem problems... more nausea, vomiting, speech
deterioration, temperature regulation difficulties, breathing
problems, heart rate issues, etc. All the things we're seeing
already, but more intense. His pain will increase, too, and
we'll keep on top of that to prevent suffering.
He said that yes, we can switch Joshua to a PCA pump (for
pain) and TPN/fluids when the time comes that it's
necessary. He discussed with me the possibility that I might
not want to give IV nutrition or fluids if Joshua is at the
end... or close to the end... saying that if he's at a point
where he's not waking up much or at all due to being
heavily sedated with pain medication, perhaps I will not
want to prolong things by continuing to give him nutrition.
If that makes you sick to think about, then you're right
where I was when I heard the words come out of Dr. T's
mouth. He also made it clear that the decision will be mine
(and Charley's) to make, not his or any other doctor's, and
everyone will respect our wishes when that time
comes. No one is going to withhold fluids or nutrition from
Joshua without express permission from his parents.... I just
can't fathom giving that permission, but I guess we'll see
what the future holds.
He said that he can't know for sure how much time Joshua
has left, but based on the changes in Joshie's breathing &
other symptoms pointing to the progression of his
condition, he guesses a couple more months.
He said there really is no way to avoid the increasing
sedation effects and that it will get worse as time goes on &
we are forced to increase Joshua's medication dosages. He
assured me that Joshua will continue to get accustomed to
each increase in dosage, but that each increase will lessen
the amount of time he's awake (which is what we've been
seeing for months already). The hardest part of that is not
knowing what dose will be the one to completely knock
Joshua out... not knowing which increase will be the one to
be "too much" and make him start sleeping all the time
instead of waking up.
He talked about hospice & how it would be entirely
appropriate at this time. I explained about our awful
experience last year & he was disappointed to hear about it.
He said he is going to continue being in close, constant
contact with Dr. S & me through this, but it would be nice
to have "other eyes" on Joshua sometimes besides mine.
NOT that he doesn't believe me or trust what I tell him (he
quickly assured me of that), but just that it can help to get a
second opinion. I told him I could take Joshua to see Dr. S
every week or twice a week if that would help. He said that
something like that WOULD be helpful and he'll talk to her
about it, so we'll get an appointment schedule figured out.
That's basically the gist of the conversation. Now you know
why I said yesterday that there was no good news about
Joshua.
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
Written August 30, 2012 12:27am by Kate Parker
Today was an awful day from an emotional point of view.
There was no good news for either Joshua or Bethany and
lots of really hard stuff. To top it off, I wound up in urgent
care getting diagnosed with a UTI, which then necessitated
a trip to the pharmacy to pick up antibiotics. Really, it was
the icing on the cake today. I wound up having a 'fall apart'
crying jag during a phone conversation with a friend as I
shared with her everything the day had held.
Bethany's surgery tomorrow is at 8:30am and will take at
least 4 hours.
Her tethered cord surgery will be at noon on September
10th.
Joshua's new base dose of oxycodone was increased again.
He'll continue our present routine of getting something
every 2 hours around the clock. Once he's accustomed to
this new dose, we'll increase his methadone. Dr. T watched
Joshua breathe & confirmed the change we've noticed (his
intermittent gasping) is due to symptom progression. We
talked about lots of things and I'm simply too tired to write
it all out tonight, but I'll share more later.
Joshua had a really hard day. Lots of nausea, not feeling
well & sleeping in-between bouts of not feeling well. I am
hopeful that tomorrow will be a better day for him since he
won't be woken early or have to spend 4.5 hours in the car
followed by hours at the hospital. He'll be able to sleep
until he wakes up on his own & Adam can keep things
quiet & relaxed, which should help.
Thanks for praying for Bethany's surgery tomorrow. I will
be with her at the hospital at 6:30am (Adam will stay with
Joshua at the RMH so he can sleep). Charley will be
driving up in the morning (he got out of work late today &
was too wiped out to drive safely) & then will go home on
Friday since he has to work. I'll post updates on Bethany's
page (http://www.caringbridge.org/visit/bethanyparker) as I
get them from the cardiac case manager. I've been told the
first update will be 2 hours into the surgery since the first
couple hours will be spent getting all of the lines/equipment
into place (peripheral IVs, arterial line, central line in her
jugular, potentially a line in her femoral artery, intubated &
placed on ventilator, etc). After that, I was told updates
would come more frequently.
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Written August 28, 2012 10:57pm by Kate Parker
I don't want to sound melodramatic, but I am feeling
concerned & would greatly appreciate prayer for not only
Bethany, but also Joshua.
His oxygen saturation, which should be in the mid to high
90% range, is going down into the 70's when he is upright
& talking during the day & into the low 80's when he is
sleeping. I am positive this is contributing to his head pain,
which is getting harder to control despite our giving meds
every 2 hours. He asks me to gently rub the back of his
neck because it hurts. The tubing that runs along the top
right side of his head & down underneath the skin along his
neck into his abdominal cavity to drain excess spinal fluid
from the shunt in his head seems to be stuck in scar tissue,
so any time the tubing gets stretched (like when he turns his
head to the left) or if someone touches it when washing his
hair or rubbing his neck, it causes him pain. We are giving
him oxygen more often during the day to help his O2 levels
get back to normal more quickly after each apnea episode.
I'm worried about Joshua. I'm nervous about how he will do
being away from home for potentially 2 weeks. Stress
makes things harder for him & being away from home will
stress him. I desperately want to be able to keep him happy
& relaxed as much as possible and I don't want him to
"tank" while we're up there.
I'm apprehensive about this upcoming surgery for Bethany,
which I was told today is being done not because it's good
timing, but because her heart is bad enough we can't wait
any longer to repair it. It's actually not the ideal time
because she's only been off oral steroids for 18 days & she
got steroids injected just 6 days ago.
I'm nervous about my appointment with Dr. T tomorrow
since it's going to be a tough conversation.
I'm nervous about the pre-op appointment with Dr. I
tomorrow since he will be discussing all of the concerns the
surgical team has with regards to the repairs they will be
doing to Bethany's heart. He will also be the final word on
whether or not Dr. W can do Bethany's spinal cord
detethering surgery on September 10th (Dr. K said it was
fine, but wanted to pass it by Dr. I, too).
I'm nervous about the pre-op lab draw because if the
Actemra Bethany received 4 days ago (which technically
should not have been given so close to surgery, but we
couldn't risk not giving it to her & having her flare) has
made her neutropenic (white cell count too low) or if her
platelets (cells that stop bleeding) are too low, they won't
be able to do surgery at all.
So... yeah... prayers and/or words of support,
encouragement & comfort would be really appreciated. I've
said before that it's difficult having 2 chronically-ill,
medically-fragile kids and at times like this, it's REALLY
difficult. Not just physically, but emotionally. Add in being
away from my other kids & husband and... well... it's just a
good recipe for feeling overwhelmed & really, really sad.
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Written August 23, 2012 10:30pm by Kate Parker
We're home. Joshua slept 95% of the way home, which
made the trip go pretty quickly (Bethany traveled great, as
always). It's now 8:30pm and he is saying he's tired and
wants to go to bed. He's been awake maybe 5 hours
today. *sigh*
I'll be able to meet with Dr. T sooner than 2 weeks from
now because we learned today that Bethany's open-heart
surgery will be next Thursday, so I'll sit down with the
palliative care doctor at some point while she is inpatient
and we'll hash out all of the issues pertaining to Joshua.
We (Megan, Bethany, Joshua & I) have to go up on
Wednesday morning for pre-op appointments with the
cardiothoracic surgeon & for Bethany to have labs/chest x-
ray done. Charley will drive up on Wednesday night after
work so that he can be there for Bethany's surgery. He'll
stay Thursday & then return home on Friday to return to
work Friday night. Adam will stay home to take care of his
siblings.
It feels like we were in a lovely little lull for awhile and
now that's over & things are going full-speed with both of
our medically-fragile kids. It's okay ~ I don't feel
overwhelmed or out of control, but I do have a lot of things
to get organized in a very short space of time (Joshua's
meds, which will need refilling while we're in Portland, so I
need to get the pharmacy to request a 'vacation override'
from our insurance so we can get his scripts filled early...
school plans for the kids so they can be doing lessons
despite my absence... appointments for Bethany for her
Actemra infusion & to pick up her AFOs... grocery
shopping & meal preps so the kids at home are taken
care.... plus general life stuff with all of the kids & every-2hours-around-the-clock medication administration for
Joshua), so I would appreciate prayer for everything to fall
into place. Thanks! :)
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Joshua Parker's Journal

Written August 23, 2012 10:46am by Kate Parker
Shoot, I forgot to update here last night. I'm sorry! I did
update Bethany's page, but then was tired and went to
sleep.
Joshua was okay yesterday. Some 'urpiness', so I'm
thankful we have zofran to give him, as that helped keep
everything down. It also increases his overall sleepiness,
which I wish didn't happen, but I am trying to accept the
reality that he isn't just going to be happy happy happy then
die... he's going to have to get worse, sleep more, be less &
less responsive and then die. I don't know how to accept
that. I do know I have no choice because it's going to
happen whether or not I am okay with it (and right now, I'm
really NOT).
I haven't de-accessed his port yet. He said he wants Adam
to do it because Adam does it better than me. :)
I went to Dr. T's (palliative care) office yesterday & learned
he is, indeed, on vacation. Sigh. We'll have to just stay the
course until he gets back. I was supremely disappointed
because I wanted so badly to sit down with Dr. T & talk to
him about Joshua and the possibility of moving him to a
PCA pump and letting us have saline at home to give him
when he needs extra fluids, but I guess the meeting was not
meant to be. That said, Dr. M (one of Dr. T's colleagues
who has come with him to many of his visits to Joshua, so
she knows us) called, chatted for a bit, then told me that she
would pass on my concerns to Dr. Top & that she felt it
was time for him to sit down and talk with me about where
we're heading, what the path might look like, how we plan
to manage symptoms as they arise, the appropriateness of a
PCA for pain, etc. Dr. M said she does not think it'll be an
issue to schedule a sit-down meeting to take place the next
time I'm in town (2 weeks from now) and told me Dr. T
will call me on Monday or Tuesday (if he is utterly
swamped after getting back to work).
I've got to get moving since the kids are still sleeping and
we have to check out of the motel in just over an
hour. LOL Thank you, as always, for the support &
prayers over the past couple of days. Between Joshua &
Bethany, it's been a lot for Megan & me to manage & it
helps (mentally) to know we're not alone & others are
praying on the kids' & my behalf as we trek from
appointment to appointment and deal with surprise ER
visits & the like while up at the hospital.
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Written August 21, 2012 11:44pm by Kate Parker
It has been a crazy busy day. Megan, Bethany, Joshua & I
left for Portland bright & early. We'd only gone about 30
miles when Joshua suddenly announced that he felt like he
was going to throw up. As I quickly flipped on my hazards
& pulled off the road, Megan was already putting a towel
up to Joshua's face as he began vomiting. He said he
needed to lay down, so I got him out of the van & carried
him to the passenger side, where Megan laid a chux pad on
the ground & I set Joshie on it. He continued to throw up a
bit more, then laid his head on the chux pad for a few
minutes while Megan stroked his back & I checked on
Bethany. When he thought he was done puking, I got him
back into his carseat and we got going again. Twice more,
he needed me to pull over so he could throw up, and then
he fell asleep & didn't wake up for the next 7 hours.
I called our pediatrician to apprise her of the situation &
spoke to her nurse. About 10 minutes later, Dr. S called me
to talk about what was going on. We agreed that Joshua
was entering the dangerous place where he goes into
"vomit universe," which sets him up for a vicious cycle of
vomiting causing head pain causing more vomiting causing
more head pain, ad nauseum. We didn't know if he had
gotten behind on fluids or if his increased pain was causing
the nausea, but the bottom line was that we knew we
needed to get the vomiting stopped ASAP. Ultimately, we
came up with the plan to have Dr. S call the ER at Emanuel
& let them know Joshua was coming in & would need IV
fluids, a consultation with Dr. T to adjust his pain meds, &
perhaps to be admitted.
Before we could take Joshua to the ER, though, we had to
take Bethany to her appointment with the geneticist. After
that, we met up with the rep from ATG Rehab (GREAT
company, by the way) in the lobby of the hospital to pick
up Bethany's new wheelchair. Once that was all taken care
of, we headed to the children's emergency department
where, thankfully, we did not have to wait long to get
Joshua into a room.
The doctor who came in was *fantastic*. He listened to
what had been happening, then asked what we typically did
in this situation. When I told him, he immediately agreed
to provide what Joshua needed & within 10 minutes, a
nurse had Joshie's port accessed and had drawn labs &
hooked him up to a saline IV running at 999 ml/hr (superfast).
Joshua received two boluses of fluid & some IV zofran for
his nausea. When Dr. G came back in to assess how things
were going, Joshua was dozing, but his color had improved
from gray & obviously ill to just pale. Dr. G asked me
what I wanted to do. He was willing to admit Joshua, but
when I explained that I'd just spoken with our pediatrician
(she'd called to find out how things were going) & she had
suggested I take Joshua back to our motel, try giving him
water through his g-tube like we typically do & see how he
does, knowing that if he begins vomiting again, I could
bring him back to the hospital tomorrow, and Joshua really
did not want to stay in the hospital, Dr. G cheerfully agreed
to that plan. He asked if I wanted to start trying to feed
Joshua while staying in the ER for a bit and I asked if he'd
be okay with us leaving. He said, "You know him
best! Whatever you want to do is fine by me." So I smiled
& said I'd like to just go, as it'd been a long day & I really
needed to get Bethany to bed since we had to be back at the
hospital at 6:15 tomorrow morning. Dr. G wrote a script
for zofran for Joshua since I'd left ours at home (it's been
several months since Joshua needed zofran, so it's not a
medication I typically bring with us) and said if Joshua got
worse, don't hesitate to bring him back.
Oh, and even better, we were able to leave with Joshua's
port still accessed, so if he does need to go back for more
fluids tomorrow, they won't need to stick him again.
We did not get to see Dr. T (palliative care) because no one
could reach him. He didn't return my voicemails or Dr. S's
pages, so Dr. S & I are thinking he might be on
vacation. She is going to track him (or his whereabouts)
down tomorrow & we'll go from there to figure out what
we're going to do regarding keeping Joshua's pain
managed. As of right now, I'm giving him medication
every 2 hours around the clock. I'll keep this schedule until
Dr. T gets in touch to change things around.
We're now at the motel & Joshua is ready to go back to
sleep, so I'm going to head off to bed, as well. I am hoping
& praying that tomorrow won't be nearly as "exciting" as
today was.
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Written August 19, 2012 1:13am by Kate Parker
I wish that updating here with happy news was the norm. It
depresses me to know I have to write yet another sad
update if I want to say anything. I just want things to be
different.
Joshua has had another spike in his pain, which means we
are fighting every day to keep him comfortable enough to
do anything other than lay on the couch or a bed, moaning
about how badly his head hurts. Three days now. It's
awful. I got smarter about managing things today & have
been giving him pain medication every 2 hours, then
supplementing when he needs it in-between. As a result,
Joshua has been able to play with his iPad a little bit. He's
still had stretches of laying on the couch & resting in bed,
but he's such a little trooper & rallies when the pain lessens
even an "eensy, winsy bit".
Last night, he desatted to 80% oxygen over & over &
over. Each time, the alarm would rouse Joshua & he'd
begin breathing again. Finally, he got tired of the alarm &
asked me to make it stop. I complied, adjusting the
parameters of his pulse ox to not alarm unless his oxygen
dropped lower than 80% or his heart rate slowed to less
than 45 beats per minute. He alarmed just once after that,
with his O2 dropping into the 70's.
His breathing has gotten.... different. He gasps regularly
throughout the day & night. It's not a gasp with every
breath during the day (more like every 5th breath), though
it does happen more when he's talking, but by nighttime,
almost every breath is audible. If I ask if he's having
trouble breathing, he says he's not, but it sure sounds like
he's struggling. I'm extremely relieved that he doesn't feel
like he is, though.
His fluid needs have gone up considerably. I have no idea
why. Yes, he sweats a lot, but that isn't new. There hasn't
been anything different happening that would account for
his sudden need for more fluid to be pumped in through his
g-tube each day, but whatever the reason, it's something
we're addressing by giving an extra liter of water every day.
He falls more often, so he walks less.
He occasionally chokes on his saliva. Today, he choked on
his spit, vomited a little, then choked on that. Thankfully,
it's not a daily occurrence, but it's happening more often, so
it bears mentioning.
I don't know if everything that's happening is entirely
related to the deterioration of Joshua's brain stem or if the
amount of medication he's on is partly to blame, but I guess
in the end, it doesn't really matter since we can't stop giving
him pain medication & we can't fix his brain stem. I do
wonder, though, because if it's the meds, I question if
maybe we could switch him to a different medication, one
he's not as tolerant to, and therefore have him at a lower
dose with less side effects. I don't know if it's possible, but
when we are in Portland this next week (Bethany has a
bunch of appointments & procedures), I plan to meet with
Dr. T, Joshua's palliative care doctor, and I'll ask him. If
nothing else, I know Dr. T will adjust the base dose of
Joshua's meds & that should enable us to keep his pain at a
much-lower level with less difficulty, and I will welcome
that.
I wish the road we were on was more-traveled so there was
something of a "road map" to consult as we went along. I
wish the doctors could tell Charley & me, "Okay, when
these things start to happen, you'll know the end is
near." It's really difficult not having any idea what to
expect. I understand the mechanics of what will happen
inside Joshua's brain as things slide downhill, but I am not
nearly as knowledgeable about what we can expect to see
physically. A sweet friend suggested I contact Joshua's
doctors to ask them, collectively, what their best educated
guess would be, so I am going to do that. I understand they
can't tell me for sure what will happen, but it would help to
have *some* idea.
I spent some time tonight reading about what impending
death can look like, but I don't know how applicable it is
for Joshua. The websites I read seemed geared toward
those dying of cancer or old age, not something like a
deteriorating brain stem, and I don't know if the process is
the same for every condition or not. It kind of bites to not
have anyone to turn to for answers, and not knowing what
to expect makes it difficult to know how to make good
decisions anymore or even what constitutes a good
decision.
For everyone who wants specific prayer requests, here are a
few:
1. Pray that Charley will be at home when Joshua dies
rather than at work. He feels the same way I do ~ that we
were there together when Joshua was born, so we want to
be there together when he dies. I do not want to have to
make a frantic call telling him Joshua is in respiratory
failure, which would give him only 3-4 minutes before
Joshua's heart would stop & obviously would not allow him
to get home in time, nor do I want to have to call and tell
him our son is gone.
2. Pray that when Joshua dies, those of us in the room will
be able to tangibly sense God's presence. I NEED to know
God is there.... that when Joshua leaves my arms, he will be
in Jesus' embrace, instead. Maybe that sounds crazy, but I
never claimed to have logical emotions.
3. Pray for Joshua to die peacefully. I want it to be an easy
transition for him.
4. Pray for Joshua's death to be a peaceful experience for
his siblings. If Joshua dies during the night (what we are
praying happens) or in the hospital, Megan, Adam & Emily
want to be present. This will be our first experience with
seeing someone die & I would appreciate prayer for the
protection of my kids' hearts... I don't want them to be
frightened.
5. Pray for God to grant us more time with Joshua than the
doctors think is possible.
*sigh*
I can't believe I am having to think more about the death of
my little boy & plan for it. It's surreal. Even though it's not
like this is a surprise ~ we've seen it coming for almost 18
months ~ it's still shocking to be here now. I still hope
we've got months left before I have to write the post I am
dreading & make the phone calls to friends who won't want
to hear the words I have to say, but I have no idea how
close we are to Joshua's last day. If you had asked me a
few weeks ago, I would have said I was sure he'd make it to
the end of the year & even beyond. I would have said that I
could not imagine him dying any time soon. After the past
week, however, I can't say that anymore. I don't think he'll
die tonight or next week, but I can't imagine how he will
make it to the end of the year if this downward spiral does
not slow down. It's heartbreaking to contemplate. I feel
like I'm sliding down a muddy slope, frantically trying to
dig in my heels and grabbing wildly at the ground in an
attempt to slow the inexorable descent toward a destination
I just do not want to go to. Not quite the picture of
Christian acceptance of God's will, I know, but there ya
have it. I know God has a plan He's working out & I trust
Him, but I still don't want to have to DO what He has said I
am going to have to do. I don't want to lose Joshua to
death. I don't want to be separated from my son for onlyGod-knows-how-long. I want to peacefully accept God's
will, but darn it if I know how to do that when it involves
Joshua dying. I realize that in the end, it won't matter what
I want because Joshua will die when God has ordained it to
occur, but I really am hoping that when that day comes, I
will be able to open my arms & let Joshua go with a hug, a
kiss, an "I love you," and complete faith that God is still
good.

Written August 15, 2012 8:22pm by Kate Parker
I took Joshua to see his pediatrician, Dr. S, for his monthly
check-in. He's 4'3", 60 pounds, heart & lungs sound great.
If it weren't for that pesky brain stem issue, he'd be
awesomely healthy!
Dr. S took me into an empty room to talk (Megan stayed
with Joshua), saying in front of the kids that she wanted to
give me updated information from Dr. T (palliative care) &
go over some things. As it turned out, we needed to update
Joshua's POLST paperwork to reflect that he is now at "end
of life" status & discuss the legalities of how we plan to
manage Joshua's care from here on out. She explained that
when children die, it's typically from accidents or diseases
like cancer ~ things that have established protocol that is
followed in order to let a child go. But when you have a
child like Joshua where there's no set protocol, there are
legal ramifications for ceasing treatment & we need to have
everything covered so there is no room for anyone to
accuse either the doctors or Charley & me of negligence or
worse, doing something to make Joshua die. She said the
hospital lawyer will be drawing up a document outlining, in
detail, the reasons it is medically appropriate to cease
treatment for Joshua and the plan of care for the remainder
of his days and then Charley, myself & she will all sign it.
Then Dr. S, at Dr. T's request, talked me through about a
dozen "graphic possible scenarios" (her words, used as she
apologized for having to do this to me) to determine what
we would want to do in each situation (things like if he is
choking on secretions, would we want him suctioned, or at
what point would we discontinue fluids & feeds, or what
would we do if one of his shunts malfunctions). Bottom
line is that Joshua remains a DNR (do not resuscitate) with
the addition of using comfort measures only to allow a
natural death (which is now called AND ~ allow natural
death). IF he were to get an acute infection in the near
future, when he's still doing pretty well (all things
considered), then we WOULD treat with antibiotics & IV
fluids, but if he were to get something like pneumonia at a
time when he's mostly-sleeping and/or not very responsive,
then we would treat with IV antibiotics because we don't
want him to die of suffocation as his lungs fill with fluid,
but we'd withhold IV fluids & food & allow him to die
peacefully.
There was more, but honestly, typing out just that much
made me feel as physically sick as I did when Dr. S & I
were having the talk, so I'm going to stop. You get the
idea.
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Written August 13, 2012 4:01pm by Kate Parker
Yesterday was a better day for Joshua, without major pain
that we couldn't control. Today is good as far as his head
not hurting, but not great as far as interaction goes. Joshua
woke up around 10:30am and then got tired & laid down on
the couch at 1pm, where he fell asleep & currently is still
napping. At least he's not hurting, though. I'm thankful for
that. I don't really know why he's got the increased
sleeping thing going on since we haven't increased his
meds and he hadn't been sleeping nearly as much, but I am
guessing it's related to overall decline.
The kids & I were able to get a few thumbprint pendants
made with Joshua yesterday. We'd like to make some
more, but need to accommodate Joshie's ability to
participate, so I anticipate this being a multi-day
project. We're all happy that we got *some* done, though.
I don't have a lot to say right now, but please know my
family & I appreciate your prayers & well-wishes. We
know God is still on the throne, still working out His plan,
and we try to rest in that knowledge as much as
possible. It's comforting, but it doesn't make the hurt go
away.
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Written August 11, 2012 10:13pm by Kate Parker
No pictures today. Joshua has had a lousy day, culminating
with head pain so severe he was lying on the couch pastywhite & sweating up a storm while he waited for extra
doses of oxycodone & scheduled doses of oxy &
methadone to kick in. It never really did and he eventually
went to sleep at about 4pm, which he does only when
nothing else is working to help him feel better. It is an
escape mechanism for him.
I saw just one smile from him in the 4 hours he was
awake. He didn't eat or drink anything. He played on the
computer for less than 20 minutes before needing to lay
down. He barely spoke & was in no mood to interact.
Days like today are awful.

Written August 10, 2012 1:23am by Kate Parker
Sorry for no update. I had thought we'd be able to do the
craft, but Joshua wound up having head pain & a
stomachache after eating noodles (he just can't seem to
digest them anymore), so he was not "up" for making
thumbprint anything. I am hoping to do it on Saturday
(can't do it tomorrow because I'll be at the hospital with
Bethany for 6+ hours doing her scheduled infusion), so if
my plan comes to fruition, I'll share pictures then.
It used to be that Joshua slept the greater part of one day
and would be awake the greater part of the next two
days. Now that's flipped. He sleeps 18+ hours two days in
a row and then about 10 hours on the third day, so we get
5-6 awake hours for two days and then 12-14 awake
hours. We look forward to what we have coined "awake
days". Thankfully, Joshua is generally happy when he's
awake, so we get to have fun with him.
The Lorax came out on DVD a few days ago and we picked
up a copy for Joshua. That is the first and only movie he
has ever seen in a theater. Taking him to the movies was
an item on Megan's "bucket list" for things she wants to do
with Joshua before he dies, so The Lorax was the movie we
took him to. I parked his wheelchair in a spot designated
for handicapped individuals and then carried Joshua up
about 6 rows. He reclined on my lap for the entire movie
and Megan and I agree we will always remember Joshie's
giggles throughout the movie. He absolutely LOVED
it! When we showed him the DVD, he clapped his hands
and immediately wanted to watch it. Once more, we
smiled as we listened to him laugh at the scenes that
humored him. He tries to sing the songs, too, which is
highly entertaining & utterly CUTE! His little voice is just
so dang sweet!
Overall, things are fairly status quo at the moment. Week
by week, we see gradual changes in the downhill direction,
but day to day, things seem mostly okay and I am very
grateful for the good times we are having.
I need to head to bed (too many late nights are catching
up), but if all goes well, I'll have some cute things to show
off in a couple of days.
Goodnight!
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Written August 6, 2012 5:23pm by Kate Parker
Super-quick update ~ Joshua woke up happy & has been
doing much better today. Thank you for the prayers for
him!
We're going to work on another craft today, so I'll share
pictures when we're done. :)
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Written August 6, 2012 2:43pm by Kate Parker
If anyone sees this tonight and wants to say a little prayer
for Joshie, please do. He's had a bunch of breakthrough
head pain today (he didn't wake up until 6:30pm, after 18.5
hours of sleep) & hasn't felt very good, but we don't know
exactly why. He's not sick, but his GI tract just isn't
functioning as well as it used to (which wasn't great,
anyway), so he winds up with more tummy pain more
easily. He also has been having more trouble breathing
(that's how he explains it), but there isn't anything I can do
to help him except adjust his position & sometimes give
him oxygen (which does nothing for him but is a
psychological help).
Tonight marked the first time he wanted something and no
one could understand what he was saying. He repeated
himself over & over, finally getting so frustrated that he
began crying. He was unable to show us what he wanted &
he couldn't think of another way to explain. Emily & I
made it into a game, asking him if we could play "20
Questions" & try to guess. Joshua wouldn't speak, but he
would nod or shake his head. It took awhile, but we finally
figured out that he wanted help with one of his computer
games. It was horrible not being able to understand him,
though.
I just want him to feel better, to be happy, to not have any
of this happening at all. I know that's not realistic, but if
you want to pray that God will slow down the decline,
that'd be great .

Written August 5, 2012 5:50pm by Kate Parker
After reading the suggestion that I make Joshua's silhouette
profile in one of the guestbook comments, I got to thinking,
which led to this:
http://img.photobucket.com/albums/v27/kpmomof6/Memor
y%20Making%20With%20Joshua/silhouettes.jpg
I'm really happy with how it turned out!
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Written August 2, 2012 12:14am by Kate Parker
Ah, you guys are the best! Thank you for the wonderful
memory-making suggestions!
I bought paper today to do silhouettes. I got what I *think*
will be a very cool idea from things suggested. If it turns
out, I'll share a picture! :)
I knew about the Thumbies necklaces that a few people
mentioned. The woman at the mortuary where we made
Joshua's arrangements shared the Thumbies brochure with
me and about a month later, a sweet friend emailed me to
say that the Lord had impressed on her & her husband that
they should gift me with a Thumbies necklace after Joshua
dies. That amazed me because I knew as soon as I looked
through the brochure that I wanted one, but also knew I
wouldn't be able to afford it and I hadn't told anyone about
wanting one before my friend contacted me, not even
Charley. All I remember saying to God right after looking
at the brochure was, "God, I would love one of those." It
wasn't even a "formal" prayer, but God cares about us &
wants to give us good gifts! (Matthew 7:9-11) Incidentally,
that conversation with my friend also confirmed for me the
impression God had given me that Joshua would not be
healed here on earth, but rather, he would be healed when
God took him to heaven (why else would I need a
Thumbies necklace?).
I do want to take one moment to express my preference that
no one refer to Joshua as an angel once he has died because
a child does not become an angel in heaven. Human beings
are not angels. When we die, we do not become
angels. We are given a glorified body, but it is in human
form, not with wings like an angel. Angels & humans are
entirely separate creations of God's. The Bible is clear
about that and, as such, it makes me uncomfortable to hear
anyone talk about how Joshua will "earn his wings" or "be
an angel" or "watch over us" (aka 'become a guardian
angel'). None of that is Biblical, so I don't believe it. I am
satisfied with knowing Joshua will be made perfect in
God's image in heaven. He won't be transformed into an
angel, though, so please try to not say those things to
me. I'm not angry & I am not trying to offend anyone. I'm
just trying to explain how I feel about this topic. I know it's
a sensitive one for anyone who has had a child die & I don't
mean to hurt anyone's feelings. I know people mean well
when they say such things. I just feel strongly that as a
Christ-loving person, I need to talk about God's Word as
accurately as possible & share what I believe to be true
when the situation arises, which, right now, means not
perpetuating the myth that children turn into angels or get
wings when they die.
Anyhow, going on....
I love the idea of making some of Joshua's clothes into
pillows for his siblings. Stuffed animals are adorable, but
the siblings who will be aware of Joshua's death & will be
impacted by it are almost-21, almost-20, 13, twins who are
almost-11 & almost-9 (yes, lots of birthdays are coming up
in our family, LOL). They are all pretty much past the
stuffed animal stage and while I do believe the younger
kids would enjoy snuggling with a stuffed animal that was
Joshua's (and he has about 20 that live at the foot of his
bed, so they can each choose one or two from that
collection), I think a pillow will be much more their
"style". My friend, Basia, has offered to help me sew the
pillows (thanks again, B!) & I think the kids will love
them. Thanks for the great suggestion!!!
I would love to have a small quilt/throw made from
Joshua's clothes that I can wrap around me. That was a
really wonderful suggestion, too, and I plan to do that after
he no longer needs his clothes.
The link to the Pinterest homemade Thumbies is fantastic ~
I will be doing this with the kids. Hopefully they'll turn out
well... I'll share pictures after we do it.
Using Joshua's hair is a lovely idea. He doesn't have long
hair or even "longish" since he prefers a close-cropped
style and with the copious amount of sweating he does,
super-short hair works best for him, which would make
getting a "lock" of his hair difficult. Thankfully, however,
I have a bunch of his hair from his surgeries last
November. When almost half his head was shaved, the
surgical nurse was kind enough to put a big chunk of
Joshie's hair in a baggie for me. I will share that with the
kids who want a piece of their brother's hair. Some of them
also want a tiny bit of Joshua's ashes after he's cremated to
put into a locket (the ashes would be in a tiny vial, not freefloating), so I was thinking I could incorporate the ashes &
hair into a piece of jewelry for each of the girls and I'll
think of something for the boys that will be meaningful to
them.
A few hours after I read the idea about using some of
Joshua's hair in jewelry, I learned that one of my friends
has started an Origami Owl business recently. I had no clue
what that was, but when I went to her site
(http://meldellanos.origamiowl.com/how-to-build/) & saw
it was "jewelry that tells a story", I immediately thought
about the suggestion given here of using a bit of Joshua's
hair in a locket and realized this was the perfect way to do
it! Another incredibly special friend who makes beautiful
stamped jewelry is going to make a special disc for me to
put in a locket (it'll say "Joshua") & I will put charms that
are significant for Joshua in the front of the disc & the
ashes & hair in the back so I know they're there, but not in
a completely-obvious way that might make others
uncomfortable if they knew what it was. The timing of
Mel's Origami Owl link being shared with me the same day
I received the suggestion of using Joshua's hair in a piece of
jewelry was a beautiful sign of God in action & I am happy
to have received it!
The verse shared with me, that the Lord is near the
brokenhearted & saves the crushed in spirit (Psalm 34:18)
was exactly what I needed to hear. Thank you, Sarah, for
reminding me of that particular Truth. I so appreciate
friends who hold me up in spirit when the circumstances of
life are so dang hard.
And Michaelanne, you were speaking my language when
you shared that song! I'd never heard Kutless' "Even If", so
I pulled it up on YouTube and Megan, Adam & I listened
to it together. Definitely a tear-inducing song for all of
us! Thank you so much for sharing it! I admit, I was kind
of blown away that someone I don't know would hear a
song on the radio & think of Joshua & my family... how
amazing is it that God can bring people into our hearts &
minds like that? I am touched, sincerely, that you care & I
really do love the song. It's been added to our family's list
of "Joshua songs" ~ songs the Lord has given us that are
significant for what we are going through with Joshua.
My big kids & I really liked the suggestion of having a
duplicate of an item that is special to Joshua & sending one
to be cremated with him while we keep the other one. For
us, that will be a Beanie Baby alligator ("Swampy"). It is
Joshua's favorite beanie and he is on his third one now,
having worn out the other two (you can only wash Beanie
Babies so often before they fall apart). I will get another
Swampy, which I am absolutely certain Joshua will be
MORE than happy to love on (*grin*) and then we can
keep it with us while sending the 'twin' with him.
To everyone who offered suggestions, THANK YOU!!!!! I
am so grateful for the ideas shared because so many of
them are simple & easy to do, yet will be so meaningful for
my family. I had felt a kind of desperation ~ that "What am
I missing?" feeling ~ but now I feel better. I've already had
Joshua do voice recordings for his brothers & sisters using
ceramic hearts with his handprint on the front, & when you
press on the heart, it activates the voice message ~ Joshua
did one for each member of the family, saying whatever he
wanted to each sibling & his dad & me ~ and those,
combined with the other things we've done plus all of the
other wonderful ideas given here, make me feel like I've
got the bases covered as far as memorabilia that will be
significant & meaningful for my children (and Charley &
me) after Joshua goes to heaven. It won't be enough... only
having Joshua still here would be enough... but hopefully
having these tangible reminders will help soothe our hearts
during the really-tough times. We know God will be everpresent & will give us comfort, but I am really hoping that
having things we can touch & hear & smell & see that
remind us of Joshua will help, too. Thank you, again, for
your help. It has sincerely been helpful & I am truly
appreciative of your input!
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Written July 29, 2012 10:08pm by Kate Parker
Joshua is good. He's sleeping, on average, 15 hours out of
every 24, but for the hours he is awake, he's a happy little
guy who smiles more often than not & enjoys playing on
the computer or his iPad, looking at books, "cuggling" with
his mama or big brother, Adam, building with legos or pop
beads (a favorite activity to do with brothers Isaac & David
& sister Sarah), painting pictures with Emily and going for
walks (he rides in his wheelchair) with everyone. There are
days when he feels good enough to go visit Daddy at work,
too, which makes Charley & his co-workers grin when they
see Joshua coming in the door. Almost all of his apnea
occurs when he is awake, and he regularly desats when he
is talking or moving around a lot, but he recovers on his
own without stimulation or reminders to breathe, and we're
actually almost accustomed to the gray/blue coloring that
appears around his mouth and the dark purple that appears
under his eyes during these episodes.
For the greater part of every day, we aren't focusing on the
fact that there is nothing more we can do to extend Joshua's
life. The younger kids are thrilled that their baby brother
won't be having more surgery because to them, it means
Joshua, Adam & I won't be far away in the hospital for a
month or more. They understand that not doing surgery
means Joshua will die sooner, but they're great at living in
the moment & not thinking too far down the road, so they
aren't sad right now. The bigger kids, Charley & I are a bit
more emotional about the situation, and while we aren't
thinking about Joshua's death all day long every day, we
really can't forget about it, either. Every headache, apnea
episode, breathing abnormality or other symptom is a
reminder to us, but we are all trying to use those reminders
in a positive way, as a nudge to enjoy Joshua as much as
we possibly can today, rather than allowing it to make us
sad.
There are times I look at Joshua when he's having a good
stretch during the day, and think, "He isn't DYING! He's
going to be fine! What are you so worried
about?!?" Crazy, right? I think things like, "Doctors are
wrong all the time. Maybe they got the diagnosis
wrong. Maybe he will surprise everyone by living until
he's 10!" Then I invariably make the mistake of speaking
one of my crazy thoughts aloud to Megan or Adam, and
they shake their head and quietly say, "No, Mom." Then I
sigh heavily & admit that I know they're right. And they
are. I know the truth. I've seen the intraoperative
pictures. I've seen the MRI. I see the changes in Joshua's
level of functioning. I hear him gasp as he sucks in a big
breath to compensate for the more-shallow breathing that
has become his norm. I know. Yet despite knowing, my
brain (or maybe it's my heart) almost refuses to believe
it. It's hard to explain, this duality of thought. The
knowing something, but not wanting to believe it's true. If
denial could cure him, I would keep my head buried in the
sand forever.
I think what is hardest for me right now is knowing what's
coming. How many times have I watched Joshua become
increasingly symptomatic as a result of scar tissue
progressively blocking the flow of CSF & increasing
pressure in his head, which compresses his brain stem &
causes him to experience more episodes of temporarily not
breathing and his heart beating very slowly? Too many,
though in the beginning of his life, the symptoms didn't
include apnea. Each time, Joshua's brilliant neurosurgeon
has gone into his head, removed scar tissue & shrunk the
tissue of his cerebellum to remove pressure from that
dysfunctional, deteriorating brain stem. In doing so, she
has "bought" Joshua more time to live & more time to be
with his family & friends. Now we know there won't be
any more "buying time," no more extensions, which means
that when the progression of symptoms gets going fullforce, like a stone rolling down a hill & picking up speed as
it goes, we will know the end is coming & there won't be
any way to slow it or thwart its arrival. Knowing that kind
of really sucks, but I guess the silver lining is that, barring a
sudden herniation of his cerebellum causing instant death
(which, yes, could happen at any time), we will not be
taken by complete surprise when Joshua dies.
The biggest blessing is that Joshua's death *should* be
peaceful for him. If he stops breathing while he's awake,
the lack of oxygen will cause him to lose consciousness &
then he'll drift away. If he stops breathing at night while
he's asleep, he'll never be aware that it's happening. I do
wonder if he would have some feelings of panic if he
stopped breathing during the day & didn't start up again,
but I suspect (because I don't know for sure) any
momentary fear would quickly subside as the oxygen
concentration in his blood decreased. No matter how it
happens, I want to be there when he dies. I was awake,
aware & present when Joshua was born; I want to be
awake, aware & present when he dies. I want to know that
his last moments on Earth were spent surrounded by his
family, being held & kissed & loved. That is a request I
have asked God to grant me and I hope He does. Charley,
Megan, Adam & Emily want to be with Joshua,
too. David, Sarah & Isaac don't want to watch their brother
die, but they have all said they want to spend time with him
afterward so they can be convinced he's really gone. We
will make sure that happens. Now that I am thinking about
it, I need to write down what each of my kids has told me
they would like to do after Joshua dies and give the list to a
friend (who will come over as soon as I call her) so that she
can help to make sure the little kids all get to do the things
that are important to them. I don't trust that on the day
Joshua dies, any of us will remember Isaac wanted to read
Joshua a story one last time or that Sarah wanted to get one
last hand print for the scrapbook she is making, and once
his body has been given over to the care of the mortuary, it
will be too late. I don't want my children to be filled with
the regret that comes from thinking, "Oh, I wish I had
remembered to....." or "Oh no! I wanted to..... " Their
sadness will be hard enough to face on top of Charley &
my own broken hearts without any regrets making it
worse. I'm thankful I have precious friends who will come
help in those first awful hours so I don't have to remember
everything on my own.
I'm also thankful Dr. W put in the VP shunt last
November. For those that don't remember, that's a tube that
goes from one of Joshua's ventricles in his brain (where
CSF is produced) to his abdomen, allowing extra fluid to
drain and get reabsorbed by his body. If he didn't have the
VP shunt, there would be no way for cerebrospinal fluid
that is blocked by scar tissue to drain, which would
increase the pressure against his brain and, subsequently,
his brain stem, which would lead to his death. Because he
has the shunt, some of the fluid that is blocked by scar
tissue can drain through the shunt catheter. Unfortunately,
more fluid will be produced & blocked by scar tissue than
the shunt can drain adequately, which will lead to the
increased pressure against his brain & brain stem
eventually. Already we can see evidence of this happening
on the MRI Joshua had last week. He has always had tiny
ventricles (caused by pseudotumor cerebri) and once he got
the VP shunt in November, his ventricles disappeared from
sight on MRI and CT scans. They collapsed. Now,
however, his ventricles are almost normal-sized. While
that may sound like a good thing, it's not. It indicates his
shunt is not draining as effectively as it used to and there is
fluid building up, resulting in his ventricles being dilated,
and eventually Joshua will have symptoms from the
increased pressure against his brain/brain stem. Still, I am
completely convinced that without the VP shunt, we would
have lost Joshua already. With scar tissue blocking the
flow of CSF the way it currently is, it's the shunt that has
continued making a way for blocked fluid to be moved out
of Joshua's skull. I think it's really incredible that the VP
shunt, which Dr. W had always believed would kill Joshua
(and was the reason she resisted putting one in until he was
literally at death's door at the end of last year & we had
nothing to lose by giving it a try), has actually ended up
extending his life. God really does work in mysterious
ways!
LOL I just re-read what I've written and darn, I am all over
the place, aren't I? Ah well, sometimes the whole streamof-consciousness journal entries are the most cathartic for
me, even if it means they're not so easy for a reader to
follow. :)
We are not living as though Joshua is absolutely going to
die by December 31, 2012, but we are living with the
understanding that he will die sooner than we are ready to
let him go. As such, we are trying to think of what things
might be really valuable for us to have as memories once
Joshua is gone. We have hand castings of his hand holding
each one of our hands. I have voice recordings that Joshua
made for each member of our family. We have pictures &
videos. I have an album that has a voice-recorded message
for each picture ~ that is for the entire family. What
else? What other memory-making things should we do
with Joshua? If you have any ideas for inexpensive things,
please leave me a comment in the guestbook. I know there
won't be any "things" that compare to having Joshua with
us, but if there are "things" that could help make bearing
the pain of his absence even a fraction easier, especially for
my children, it's worth it to do/obtain those things. No
amount of preparation is going to make losing Joshua even
remotely okay for Charley or me, but as a mother, I feel
like I *have* to try to ease the devastation for all of
Joshua's brothers & sisters. Even if I fail, I hope that
having special pictures or hand castings or his voice to
listen to will bring them comfort in ways I won't be able to.
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
Written July 24, 2012 6:29pm by Kate Parker
Joshua did well during his MRI & in recovery
afterward. He slept soundly for the next 7 hours, through
his appointment at the neurosurgeon's office & Bethany's
appointment with the general surgeon & Megan & my visit
with the hospital chaplain and child life specialist (both
have become special friends over the years). We're back at
the motel now & Joshua is playing with a new toy he
received in honor of his courage.
The meeting with Jenny (Dr. W's P.A.) was very emotional
& thus very difficult. The finality of today hit me in a way
I was not at all anticipating, nor was prepared for. Joshua is
done with treatment at Legacy Emanuel. Not because he
was sick & got well. He's done because there is nothing
more anyone can do to extend his life. I know we KNEW
all of this... but something hit me differently today. Maybe
it's because now we're officially done... the last test is
complete & the last appointment has been had. Maybe it
was seeing Jenny cry as she kissed a sleeping Joshua
goodbye, then quietly told me she wishes they could have
fixed him & asked me to let them know when he dies.
I'm sorry; I don't know exactly what I'm trying to put into
words. After I've had some time to think things through,
I'll try again. I just wanted to keep my word ~ I said I'd
update, so I wanted to. Bottom line is that Joshua came
through today beautifully & is okay now. Thank you for
praying for him today. I appreciate that so much.
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Written July 24, 2012 10:58am by Kate Parker
Thank you SO MUCH for the comments this
morning! Thank you for thinking about Joshua & Bethany
and for coming here to tell me you were
praying. Omigosh, I can't even tell you how much it meant
to see those messages this morning.
Joshua is having his MRI right now. For the very first time
in doing this procedure, I got a bit emotional (not crying,
but choked up). I think I was overwhelmed at how God
blessed us with the very BEST anesthesiologist & nurse
this hospital has in the MRI clinic (seriously ~ we've had
'em all over the years) to be the ones taking care of Joshua.
The nurse accessed Joshua while he was in his wheelchair,
making it comfortable for him. The anesthesiologist held
Joshie's hand & chatted with him, keeping him so
distracted he didn't even notice when the needle went in (I
did the cold spray). Then the anesthesiologist invited me to
come with them, so I was able to put Joshua on the table &
get him comfy there & give him kisses. I talked to him
while they put Propofol in his IV & drifted off to sleep. It
was as perfect as it could possibly be.
Please do pray that everything goes fine with the
anesthesia. It *should,* but with Joshua being as fragile as
he is, there's no assurance that simple anesthesia will stay
simple. Dr. L did ask if I wanted to lift the DNR order, just
in case Joshua has anesthesia-induced breathing
complications. I said yes.
That said, I anticipate everything being fine. I'll update
later after his appointment with the neurosurgeon.
And honestly, thanks again for remembering what is
happening today & praying for us. I'm so thankful.
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Written July 21, 2012 1:43am by Kate Parker
After sleeping the better part of the last 2 days, Joshua
woke up at 8:30am (waaaaay early for him), HAPPY &
announcing that he needed a bath because he is stinky &
sweaty. Oh, and he said he would like his hair washed, too
~ he said that even though he knows he doesn't NEED to
have it washed, he still wants to wash it (believe me, it
NEEDED to be washed! LOL). Then he traipsed down the
stairs (holding onto the railing to get down each step) &
loudly announced to David, Sarah & Isaac, "I'm UP!" with
a huge laugh. They all cheered & excitedly greeted him &
all four played together very happily for a long while.
Aaaaaahhhh, if only every day could be like this! It was a
blissful way to begin today.
We head up to Portland on Monday afternoon for Joshua's
last brain MRI, which is scheduled for Tuesday
morning. He'll see Jenny, Dr. W's P.A., after the MRI so
his LP shunt can be reprogrammed (the MRI magnet
changes his shunt setting, so Jenny has to use a little
contraption to put it back to the correct setting again), and
then Dr. W will evaluate the MRI & tell me what she
sees. I already know the scan is just to confirm that there's
nothing she can do, so I am not expecting anything from
it. The only reason Charley & I agreed to do the MRI was
for a sense of closure. I get a copy of every MRI or CT
scan that Joshua has and I know what I'm looking at on all
of them. It will be helpful to have this last MRI to look at
& KNOW that yep, it's impossible to do anything
surgically.
Bethany has appointments on Tuesday & Wednesday, so
Megan will be coming along to help me out with the two
littles. I'm not anticipating any earth-shattering news
during this trip, so hopefully I won't have anything
unpleasant to write about when we get home again.

Written July 14, 2012 6:01pm by Kate Parker
Joshua is happy, which makes our family happy. He has
adjusted to the increased level of oxycodone with the only
real drawbacks being that his processing speed is slower &
he lays down for a rest/nap in the afternoon each
day. Other than that, he's good. He isn't sleeping any
longer at night than he was before we increased his
oxycodone & his oxygen saturation level and heart rate
aren't any different than they were prior to the increase. So
thank you to everyone who has been praying specifically
for Joshua to not be negatively impacted by the jump in his
pain medication ~ God answered that prayer.
Dr. T was right and the best we get is for Joshua's head to
hurt "only an eensy bit," but thankfully, we are able to
achieve that level of comfort & maintain it now. We've
increased the amount of water we give him through his gtube each day, too, to offset dehydration since it's so hot
now & Joshua sweats a lot. The overall effect has been
good. He is back to smiling, giggling & having better days,
for which I say, "Yeaaaa! Thank you, God!"
Now that he's not so focused on his head hurting, Joshua
has resumed entertaining his family with the funny things
he says. Last night, Charley was sitting on the couch with
his head relaxed backward & his eyes closed. Joshua
walked into the room and asked, "Why you closin' yous
eyes, Daddy?" Charley told him, "Because I have a
headache." Joshua asked, "You have a headate?" Charley
opened one eye & affirmed, "Yes," then asked, "Can I have
some of your medicine?" (he was kidding) Joshua paused
for a moment, then answered, "No!" Charley grinned as he
asked in a fake-sad voice, "Why not?" Joshua thought
about it, then replied, "'Cuz you don't have a tubie!" (a gtube) Charley & I busted up laughing, which made Joshua
insist, "You can't eat it 'cuz it tated ba-duting!" (tastes
disgusting) That made us laugh harder. I asked how he
knew it tasted disgusting and he answered, "I
burp!" LOL Charley assured Joshua that daddy didn't
really want his medicine, to which Joshua said,
"Otay. Dood!" (good) Charley leaned toward me &
quietly told me, "He sure is a funny little boy." I, of
course, agreed. He really is... when he's feeling good. And
I am so, so thankful that right now, we are being blessed
with these good days. They're such a gift & everyone in
my family recognizes that fact.
When Megan and I were driving home from Portland on
the 3rd (with Emily, Joshua & Bethany), we were both
feeling absolutely crushed emotionally from the news we'd
heard from Dr. W regarding Joshua. My iPod had been
displaying the "less than 20% battery power remaining"
message before we'd left the hospital, so I knew I wouldn't
have more than 30-45 minutes of listening to music before
the battery would die, and I asked Megan if she wanted to
listen to music then or later into our trip. She said to go
ahead and play it now. Neither of us was feeling up to
choosing songs, though, so when Megan suggested I "put it
on random," I did. Now, I have a mix of music, both
Christian & secular songs, but the entire way home, the
songs that played seemed to have been hand-picked for
Megan & me to hear at precisely that time. Yes, my battery
that had less than 20% remaining lasted for another 5 hours
of constant playtime (thanks, God) and the songs that
played ministered to us as we drove (thanks again,
Lord). After the first 5 or 6 songs, Megs and I glanced at
each other and agreed that it was just a little coincidental
that every song coming up on the iPod spoke to our hearts,
and Megan began writing down the song titles as they
played so that we could look back & remember how God
had met us in the midst of our pain that day. It was
comforting to be reminded of God's love & His presence
when I was hurting so deeply.
Some of the playlist that we listened to included songs that
I'd heard a hundred times before, but had never struck me
as particularly meaningful until that moment on that drive
home. "Stronger" by Mandisa..... "Your Love" by Brandon
Heath. And then there was "Get Back Up" by TobyMac &
"No Matter What" by Kerrie Roberts. Those two sank
deeply into my heart & have been an encouragement &
comfort these past few weeks. These lyrics specifically
"spoke" to me:
From "Get Back Up":
Wide awake in the middle of your nightmare,
You saw it comin' but it hit you outta no where,
And theres always scars
When you fall back far
We lose our way,
We get back up again
It's never too late to get back up again,
One day you will shine again,
You may be knocked down,
But not out forever.
From "No Matter What":
I’m running back to Your promises one more time
Lord that’s all I can hold on to
I’ve got to say this has taken me by surprise
But nothing surprises You
Before a heartache can ever touch my life
It has to go through Your hands
And even though I, I keep asking why
I keep asking why
No matter what, I’m gonna love You
No matter what, I’m gonna need You
I know that You can find a way to keep me from the pain
But if not, if not - I’ll trust You
No matter what
When I’m stuck in this nothingness by myself
I’m just sitting in silence
There’s no way I can make it without Your help
I won’t even try it
I know You have Your reasons for everything
So I will keep believing
Whatever I might be feeling
God You are my hope and You’ll be my strength
I want to thank everyone who has been thinking about &
praying for Joshua, me & the rest of our family. I can
honestly say that I feel better ~ more at peace with where
we're heading ~ and I have been reminded so many times in
the past 11 days that God is in control & has a plan that will
be for not only Joshua's ultimate good, but the rest of my
family, as well. I have known & believed that the presence
of pain in my life does not mean God has abandoned me or
that He is being cruel, & now I am experiencing that truth
as He wraps me in His love & is present to offer comfort in
tangible ways each time I turn to Him. Day or night, He is
always there, and He gives me songs that speak to exactly
what I am hurting about at every turn, as well as friends
who offer hugs & words that remind me I am not alone & I
am not on this journey by myself. Thanks, also, to
everyone who has shared their hearts with me via
comments in the guestbook or email. Your words bolster
me when my spirits are down.
Only God knows exactly what lies ahead, but Charley, the
kids & I will hold tightly to Him so that we can get through
each day. As always, we continue to pray that God blesses
us with much more time with Joshua than any doctor would
think possible, and we thank you for being with us as we
walk this road.
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
Written July 11, 2012 12:26am by Kate Parker
I talked with Joshua's palliative care physician today &
during the course of our conversation, I mentioned that
Joshua is never without pain & I asked if it is going to be
possible to get Joshua pain-free & keep him that way. Dr. T
answered, "No, not anymore." He said we've reached the
point where the goal needs to change from eliminating
Joshua's pain to keeping it at a level that allows him to
function & not have to focus constantly on the fact that he
hurts.
That was hard to hear, even though it validated what we're
experiencing with Joshua. He used to tell me right away
when his head began hurting so I could give him medicine,
and when I would ask how his head felt, he would answer,
"Good. It's not hurting at all." Nowadays, though, he
doesn't tell anyone that his head hurts until it's to the point
that he can't focus on whatever activity he is trying to
do. Then he'll ask for medicine because, as he says, his
head hurts really badly. I recently asked why he doesn't tell
me when his head hurts just a little bit so that I can give
him medicine & try to make sure the pain doesn't get to the
point that it's really bad. Joshie gave me a sad look and
answered, "My head always hurts. The medicine doesn't
make it go away anymore."
That hurt to hear. I hugged Joshua tightly and told him I'm
so sorry that his head never stops hurting. I've decided his
pain tolerance level must be through the roof because how
he continues to do *anything* with his head, back & legs
hurting the way they do is beyond my ability to
understand. He's incredible.
So... we aren't aiming for pain-free anymore, which makes
me want to cry. We will be thrilled if Joshua gets some
pain-free times, but it hasn't happened for awhile now &
from what Dr. T said today, we should not anticipate
reaching that place anymore. While I believe him, I can't
give up hoping that maybe he's wrong. It may be the
absolute truth, but I'm not able to accept it yet. There's
only so much bad news I can handle in one week, ya
know? It's not like the hard stuff is coming only from the
doctors, either.
Joshua can't play the Wii anymore. He can't coordinate his
movements to play & attempting to do so exhausts him, so
he no longer even tries. Thankfully, he still enjoys playing
games on the computer & on his iPad, so he spends time
every day doing those activities. He still plays with Legos
and loves pop beads, with which he & his siblings make
animals & other creations. He isn't eating much anymore
due to the difficulty he has with swallowing some foods &
because food tends to make his tummy hurt (his digestive
tract has slowed greatly, which makes food hang out in his
stomach longer & that seems to cause him discomfort). It's
really sad because he *wants* to eat, but his body won't
cooperate with letting him. At this point, we're sticking
with giving Joshua soft foods like pudding & Danimals
drinkable yogurt, cheesecake (he eats the filling) and drinks
that he enjoys. I try to not think about how he can't eat his
favorite foods anymore (pizza, chips) because that's a big
loss & it hurts.
To answer the question left in the guestbook, no, Charley is
not at home (but yes, we're still married, if that was what
you were asking ~ we celebrated our 21st anniversary last
week, in fact). He is working, on average, 68 hours per
week. He took last August off, thanks to the generosity of
many who made that possible (we remain very grateful for
that huge gift to our family), but then returned to his
job. The kids & I are fortunate to have a father/husband
who works so hard to take care of us. We wish he didn't
have to be gone so much, but unfortunately, that's the
nature of his job & there isn't anything we can do about it at
this time.
Thank you for the words of comfort & encouragement that
have been shared in the guestbook. It touches my heart that
so many care about Joshua & my family. Thank you for
taking time out of your day to come here & listen to me
ramble. I truly appreciate the support so very much.
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
Written July 9, 2012 8:49pm by Kate Parker
I don't know how to put into words how I'm feeling. "Sad"
isn't strong enough, but "despairing" isn't quite right. I'm
not in despair because I know the One who is orchestrating
every day & has Joshua and the rest of my family in His
hands. I'm still incredibly sad, though. I am a "fixer" by
nature & this is something I can't fix. I can't make it
better. I look around at my children & see the pain in their
eyes as they watch their baby brother slowly but inexorably
move downhill toward an end that no one wants to think
about. After almost 21 years of cuddling, soothing,
bandaging owies, helping to solve problems & doing
everything I can to take care of my kids to the best of my
ability, I find myself in a place where nothing I do seems to
be enough.
I have hit an emotional wall. In addition to being
physically tired, I'm mentally & emotionally maxedout. I'm struggling to push myself to read my Bible & talk
to God. I don't always succeed in doing it. I'm not mad at
God ~ sincerely, I'm not ~ I'm just overwhelmingly sad
about the circumstances of life right now, which makes
doing anything fairly exhausting to me. I think that if I can
get some decent sleep, that will help. Writing helps, too...
just pouring out the stuff swirling in my head so I don't
have to think about it so directly anymore.
Joshua's oxycodone dose was increased 28% today. From
150mg every 4 hours to 210mg. His rescue doses were
upped from 90mg every 2 hours, as needed, to 90mg 210mg (we give whatever amount in that range we think is
needed, based on the severity of Joshua's pain at the time
we're giving the med). His dosages of fentanyl, methadone
& neurontin remain the same. This new base dose is 21
times what an adult man would get.
Having to increase his pain meds makes me want to cry. I
never know if he'll tolerate the new dose well or if it will
make him excessively sleepy. I never know how the
increase will affect his respiratory
function. Opioids/narcotics depress the central nervous
system as a side effect, which means it makes a person
breathe more slowly & their heart beats more slowly. For a
child with brain stem dysfunction who already breathes
very slowly & whose heart beats slowly, increasing his
opioid dose involves the risk that his central nervous
system will be affected to the point that he stops breathing
completely. For a child whose resuscitation status is Do
Not Resuscitate, ceasing to breathe as a side effect of
medication needed to control pain would be the cause of
death because medical personnel would not attempt to get
him breathing again if he stops. Knowing that, I always
feel trepidation when given the order to increase Joshua's
medication dosages, even when I know it's absolutely
necessary & I was the person who called the palliative care
physician & pediatrician to let them know of the need.
I don't want to be the one who gives Joshua a dose of pain
medication that causes him to stop breathing. I definitely
don't want Megan or Adam to be the one to do it,
either. So... basically... I just don't want Joshua to stop
breathing because of medication. Whether that is an
impossible dream, I don't know, but it's what my heart
desires. 'Course, I don't want him to stop breathing for
*any* reason, but it doesn't seem that I get a vote for that.
I keep telling myself everything isn't that bad & that I need
to chill out, but it's not working so well right now. I'm not
normally a "fall apart" kind of girl, but honestly, I feel like
I'm facing a mountain range and I have no energy to get
over any of the obstacles in my way. I know that being
exhausted isn't helping, so I am going to enlist the help of
my big kids to take over doing midnight meds for a couple
of nights so that I can try to get a 5-6 hour block of sleep
versus the 3.5 hours I typically get in-between waking to
give meds. Maybe that will help my perspective a little.
It would also help if the doctors could figure out what is
wrong with Bethany without all of the hassles we're
encountering along the way. I know this isn't her journal,
but the challenges I am facing with her being ill contribute
to my mental and emotional fatigue, so it bears mentioning.
I'm to the point I just want Jesus to come back & rescue all
of His believers from this fallen, broken world. I don't
want to have to walk the road of a parent whose child died.
I don't want to endure that pain (call me 'chicken'; I don't
care. It's true). I don't know how to get through THIS
season of life, watching Joshua slowly decline, so I have no
idea how I will survive the season of life after he's gone to
heaven. I mean, yes, I know I'll get through it day by day,
by God's grace & leaning on Him, but I don't know how I
will WANT to survive it. I can't imagine life without
Joshua in it. I don't want to experience life without him. I
don't want my other children to lose a brother. I want to
spare them that & I know I can't. All of it tears me up
inside.
I can't forget the things I've heard and seen. All of it mixes
with the reality of the here-and-now. It's hard to see all of
the "little things" that we all (my family) were thinking
were caused by chiari or tethered cord. It's even more
difficult to remember over & over that we can't do anything
about any of it anymore & why. Not that surgery was a
guarantee for improvement, but at least it held the HOPE of
improvement. Now, without that hope, every symptom is
distressing to see.
I'll continue to enjoy Joshua's awake times (he slept a bit
over 19 hours today, waking at 7:15pm) and I'll thank God
every day for giving us more time with him. I will smile &
laugh at his antics and hug & kiss him as often as he will let
me, but I'm not sure if this underlying sadness is ever going
to go away. The Bible says, "Hope deferred makes the
heart sick." (Proverbs 13:12) I think maybe God forgot to
add that hope completely taken away makes a heart
break. Based on what I am currently experiencing, I know
it's true.

Written July 6, 2012 12:51am by Kate Parker
I've been putting off updating here. I'm generally a
talkative person, but this time, I can't seem to find the
words to explain anything. Maybe it's because writing it all
out makes it too real and right now, I just want to avoid
thinking about it. Maybe it's because this *isn't* a private
journal and, as such, whatever I write will be read by some
people who are not sensitive to how their words affect a
person in my situation & my emotions are so raw right now
that the very thought of negativity or unkind comments
makes me want to close this browser window (yet again) &
say 'forget it'. Still, I know I need to update... I know
people want to know what is going on with Joshua... I
know the information swirling in my head is pivotal in
Joshua's story & I need to write it here so I can come back
& read it someday. So I'll try. I make no guarantees that
the words that spill onto this page will be cohesive. If I
leave you with questions, you are welcome to leave a
comment in the guestbook, asking them, and I will do a Q
and A post at a later date with answers. It would be nice if
no one asked anything beginning with, "Have you thought
about trying...." because honestly, ANYTHING that could
be tried ~ anything realistically feasible ~ has been
contemplated. I guarantee there is nothing anyone could
come up with that is a realistic possibility for Joshua that
someone on his team of specialists or myself have not
already thought of &/or tried already. Aside from that,
however, you can ask me whatever questions this post I'm
currently writing leads you to ask.
Okay... got that out of the way.... so I guess I should
explain what is going on, huh?
Joshua saw Dr. W, his neurosurgeon, on Tuesday. I had
been told to bring him up so we could schedule
surgery. As such, I had gone to Portland thinking we were
going to schedule surgery. Crazy, I know. That isn't what
happened, though.
When we arrived at the hospital on Tuesday morning, just
as I was pulling into the parking garage, Joshua calmly
announced, "I've changed my mind. I don't want Dr. W to
fix my head or my back." Megan & I asked, "What?" (I
thought I must have misheard him) & he repeated that he'd
changed his mind & he no longer wanted to have surgery to
fix his head or his back. I asked, "Why?" and Joshua
replied, "I just changed my mind." Megan thought maybe
he was scared even though he didn't sound frightened, so
she tried to reassure him by saying, "Joshie, Dr. W isn't
going to fix it today. Today we are just talking with her,
okay?" He answered, "Okay, but I still don't want her to do
surgery." I'd parked the car by then, so I turned in my seat
& looked at Joshua as I said, "Do you know what will
happen if you don't have surgery?" He nodded and
answered, "I'll go to heaven sooner." Then he added,
"That's okay; I'll just go to heaven sooner." I took a deep
breath, then told him, "That's fine. If you don't want
surgery, you don't have to have it. But we're here, we have
an appointment, and we can't just not show up because
Bethany is seeing Dr. W, too. So let's go see Dr. W and
just listen to what she has to say, okay?" Joshua was fine
with that idea, so after Bethany saw her rheumatologist &
we'd popped in to see the hematologist-oncologist &
confirm an appointment for that afternoon, we headed to
Dr. W's office. I had no idea that God had just given me a
big 'ol clue about what was coming.
Dr. W came in with her assistant & we did Bethany's
appointment first. At the end, Dr. W & I went out of the
exam room to look over Bethany's MRI together. While
we were out of Joshua's hearing range, Dr. W began
discussing Joshua's current symptoms with me. We talked
about his increasing apnea & bradycardia & difficulty
swallowing & increasing fatigue & balance difficulties &
all the rest (see my previous two posts for the list of
symptoms). We looked over Joshua's most-recent MRIs of
his head & back. Then, before I could say anything, Dr. W
stunned me into silence with the following announcements:
"I can't go back in there again," she said.
"What? Why not?" was what I wanted to know.
"The last time I was in there, I didn't think I was going to
get out of his head alive. There is scar tissue wrapped
around his brain stem, adhered between his brain and brain
stem, and adhered to the dura. I've never seen anything like
it before in my life. I didn't know it was possible. If I tried
to go in there again, I know with 100% certainty he would
stop breathing, and I really don't want to be directly
responsible for his death."
"WHY didn't you tell me this back in November? Why
haven't I heard about this before now? You've never said
anything about this! Why not?" My questions came in
rapid-fire succession.
"I just wanted to get him past Christmas, Kate. I never
thought the day would come when I would need to go back
in there again, but now that it's here, I can't do it. It would
kill him."
WHAM!!!!! . Talk about getting hit out of left field! I
never saw that coming.
I stood there in silence at first, unmoving & not knowing
what to say. I had thought we were there to schedule
surgery to hopefully extend Joshua's life and instead I was
being told that it's impossible to attempt it because to do so
would, with absolute certainty, end his life in the operating
room... and his neurosurgeon had known that she would
never go back into his head again for this same procedure
since 8 months previously, when she had been seriously
concerned that she would not be able to get out of Joshua's
head without his dying due to the severity of scar tissue
encasing his brain stem, yet she hadn't told me any of that
since she hadn't thought he'd live long enough for it to be
necessary for me to know.
Wow.
I found my voice & asked, "What about his back? Would
detethering him help?"
She answered, "From a tethered cord point of view, he
looks really good." I spluttered a bit and asked, "HOW can
you think that?" She gently replied, "Kate, his symptoms
are not originating in his back. They're central. It's not
tethered cord. It's neurodegenerative decline."
WHAM!!!!! Again.
The weakness, increasing muscle fatigue, toe-walking... I
ascribed it all to tethered cord because it used to be the
condition those symptoms pointed to. Now, however, it
points to his brain stem deteriorating. To
neurodegenerative decline. Dr. W told me that when she
was inside his head last November, his brain stem was
already getting "mushy" (her term). She had no doubt after
examining Joshua that the losses we're seeing are not
because he's horribly tethered... instead, it's all central
nervous system losses. Yes, he's tethered, but not to the
degree that I thought he was. Not to the degree that is
causing the symptoms we're seeing.
Hearing that hurt. It was a literal pain in my chest that
sucked the breath out of me momentarily.
I told Dr. W that I respected her decision, but I needed to
understand why she could not detether Joshua. I told her
that from my perspective, it seemed like loosening his
spinal cord from the scar tissue it was stuck to would
remove the downward tugging of his brain stem when he
moved. She did not disagree with me, agreeing that we've
done that before, but she straightforwardly informed me
that the effort required to free up Joshua's spinal cord
would wreak havoc with his brain stem as the movement of
his spinal cord caused a "ripple effect" (for lack of better
phrase) upward. She said it would irritate his brain stem &
yes, she could detether him, but what good would it be for
Joshua to wind up dead or on a ventilator, paralyzed, from
the surgery? In other words, that procedure, too, is far too
risky to attempt. I assured her that I understood (and I
did. I do.) & thanked her for explaining it to me. She
nodded as she said, "I understand, Kate. This isn't the first
time we've talked. I know why you asked." I said, "Yeah,
I'm going to have to live with this conversation in my head
for the rest of my life." She said, again, "Yeah, I know. I
understand." And she did. It's why she spent 1.5 hours
talking to me after spending 30 minutes examining Joshua
thoroughly. She wanted to make sure I understood WHY
we are done... WHY there is nothing more to do except
manage Joshua's symptoms & pain and wait for him to stop
breathing on his own. She wanted to make sure all of my
questions were answered. She wanted to make sure I knew
she cared.
She invited me to come look at the intraoperative pictures
she'd taken during Joshua's last chiari surgery in
November. I told her I'd seen them & reminded her that
she'd given me the pictures. She shook her head and said,
"Not all of them." Then she showed me photos of Joshua's
brain stem surrounded by scar tissue. I saw my son's brain
stem adhered to his cerebellum by scar tissue ~ like an
Oreo cookie, where the filling was scar tissue & the two
sides of the cookie were the brain & brain stem. I saw
another photo showing scar tissue stuck to the dura & the
arachnoid layer of the dura, sucking those structures inward
& giving them an abnormal shape. I understood why trying
to remove the scar tissue from Joshua's brain stem would
be equivalent to trying to remove a piece of sticky tape
from a piece of wet tissue paper without tearing the
tissue. It would be impossible. I saw the pictures. I know
Dr. W was telling me the absolute truth and not copping out
because she didn't want to try anymore, which is actually
really reassuring. I will never have to wonder about that
down the road, when hindsight has me asking myself if
there was anything that could have been done or anything
we missed. Those pictures were hard to look at, but I'm
thankful they were shown to me. Seeing the mess that is
Joshua's brain stem cemented in my own mind the truth of
Dr. W's words and the reality of my little boy's medical
situation. Yes, I knew she was being honest with me & I
am fully aware of what is going on with Joshua, but
remembering what I saw when I looked at the pictures
makes it impossible for me to lie to myself and think that
maybe it's not so bad or maybe Dr. W made a mistake. I
know that sounds crazy, but it's amazing the lies your brain
will conjure up when you really want the truth to be
something other than what it is. Knowing what I saw &
being reminded of those images makes it impossible for me
to lie to myself.
Dr. W told me she was sorry. I told her, "It's okay; we both
knew the day would come when you couldn't do anything
more for Joshua. I just didn't know today was going to be
that day." I understood why she let me think we were
going to schedule surgery... she had to get me there, in her
office, to tell me in person. She isn't the type of doctor to
give heartbreaking news over the phone. I think she said
we could do more surgery (back in April) only because
Joshua had looked her in the eye and told her that he
wanted her to fix his back and his head. I don't think she
was prepared, then, to have the conversation we had on
Tuesday, so she put it off until she no longer could. I was
thankful that God had changed Joshua's mind about
wanting surgery again. It would have devastated me to
have to tell him that Dr. W could not fix his head and back
if he had still wanted her to do it. I believe the Lord
prepared Joshua's heart & that is why he quite suddenly
changed his mind on the way to the hospital. God knew
what Dr. W was going to tell me and He ensured that
Joshua did not have to hurt by being told "no" to an
impossible request. That was a blessing & I was thankful
for it. I wish God had changed MY mind ahead of time,
too, but alas, that is not how it worked.
Dr. W said she wants to do one more MRI of Joshua's
brain, to confirm for herself and for me that there is nothing
else that can be done. She said that if there was a big
chunk of scar tissue sitting at the back of Joshua's brain that
she could easily reach in & remove without getting near his
brain stem, she would do that for him. I shook my head
and told her, "You aren't going to find that." Besides, what
good would it really do when his brain stem is mushy &
encased in scar tissue that is stuck to his brain & therefore
is being squished in ways she can't fix? She was throwing
me a bone... trying to offer SOMETHING... I understood
why & saw the offer for what it was, but know it's not
something that is actually going to happen.
After we were talked out, Dr. W stood and said, "Let's go
before I change my mind." I stood, too, as I replied, "You
don't want to change your mind & I would not ask you to. I
would not want you to do something that you know, going
in, would kill him." Dr. W agreed, then added, "'Cuz you
know I'd blame YOU!" That made us both laugh & I told
her, "Yeah, I know that's true! You would!" Megan
chimed in, saying, "Yeah, but she also gives credit where
it's due," and Dr. W quickly agreed, "Yes, I do! Don't
forget that!" Then she reached over to hug me.
We went to the front desk, where Dr. W handed Lora the
patient chart and she asked, "So... what surgery are we
scheduling?" Dr. W softly answered, "None." As Lora's
jaw dropped (literally) & she let out a surprised, "Ohhhhh,"
Dr. W told her, "I want you to order a brain MRI with
CINE so we can confirm there is nothing else we can
do." Then she turned to me & we hugged again. I called
Joshua over from the prize box and told him we were
leaving, so he should give Dr. W a hug & tell her
goodbye. For the first time ever, Joshie reached up and
wrapped his arms around Dr. W's neck as she bent over to
embrace him. They hugged for about 10 seconds before
Joshua let go and said in a deliberate & very final tone of
voice, "Goodbye, Dr. W." It wasn't a lighthearted, "see ya
later!" type of farewell. It was resolute... his tone of voice
said, "I know this is it." I choked back tears and Dr. W
pivoted, walked to her office & shut the door. I
understood. If I could have walked to a private room to
cry, I would have, also. Unfortunately, I still had to take
Bethany to her appointment with the heme-onc, so I had to
hold it together awhile longer.
Megan & I cried on and off all the way home. We also
listened to Christian music and found the songs playing had
a recurring theme of trusting God, surrendering to Him,
loving Him and being refined through trials. Totally
coincidental, I'm sure (ha ha). We prayed together as I
drove, asking God to help us to glorify Him through this
painful situation. He impressed on my heart that my
fighting for Joshua is over... that I have done all He asked
me to do and now He will take care of the rest.
You might think that would comfort me and give me peace,
but it didn't. It hurt. Why? Because it means I have to
accept that we're really, truly DONE. That aside from
keeping Joshua comfortable, there's nothing more we can
do. The door to more surgery is closed, bolted, locked,
welded shut. There's nothing else. The scar tissue will
continue to build up, his brain stem will continue to
deteriorate, his symptoms will get worse and he will
die. And there is nothing any human being can do to stop it
from happening. It makes me want to scream. The
desperate part of me doesn't want to believe that we can't
figure out SOMETHING that would help. The logical part
of me that has researched every aspect of Joshua's
conditions for years knows the desperate part of me will
flail & scratch & claw around, looking for answers that will
not be found, and eventually that part will give up & accept
what the logical part of me already knows to be true. The
pain of knowing the truth is searing. Trying to force myself
to accept that yes, we really are at that point... that place
that used to be a hypothetical & "oh yeah, it'll happen
someday but someday is far away" dot on the horizon...it's
brutally difficult. Denial is a powerful force, people. I am
finding that my brain would LOVE to curl up with Denial
& pretend that none of this is happening. It is so much
harder to stay grounded in reality right now since that's a
much more-painful place to be.
When I got home from Portland, I had to break the news
about Joshua to Adam. When I was done explaining
everything, the tears were flowing freely and Joshua
walked in the room, saw me & announced, "Mommy
mommy mommy, I love my mommy!" as he came over to
give me a hug. He said, "Mommy, don't cry!" I hugged
him and asked through my tears, "Why shouldn't I
cry?" He smiled and said, "Because I'M here!" That made
me laugh & cry simultaneously. He was right, though, and
I realized the wisdom in his egocentric little boy
words. There will be plenty of time to cry when he's
gone. For now, he's still here, so I need to enjoy every
moment rather than focus on what is coming down the
pike. With the pain of learning there is nothing else we can
do but keep him comfortable for the remainder of his days
(months?) fresh in my heart right now, though, that's harder
to do than you might think it should be.
It is not anticipated that Joshua will live to see 2013, now
that surgery has been taken off the table, but the fact is that
no one really KNOWS how much time he has simply
because there is no other kid alive who has the same
constellation of conditions, so there is no "road map" for
anyone to follow. If Joshua's symptoms continue the way
they've been, with increasing apnea & bradycardia, then it
is not realistic to believe he'll live past the end of the year,
but again, no one except God knows how much time we'll
have with Joshua. From now on, we will treat symptoms as
they evolve & use medication to keep his pain under
control. If it is possible, we will keep him at home to die
versus having him in a hospital setting. I don't yet know if
he will be re-admitted to hospice, but in light of the lousy
experience we had last year with the only hospice provider
in our town, I am guessing our pediatrician will not want to
go that route. I don't know if he qualifies for home health
nursing, but at this point, I don't want a stranger in my
house providing any of Joshua's care. That is what I do. It
is the only thing I can DO for him anymore... aside from
being his Mommy... and I am not interested in
relinquishing that job to anyone else right now.
Yes, we knew this day was coming, but like I told a friend,
knowing a train is coming doesn't make the impact hurt any
less when it hits.
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
Written June 25, 2012 6:49pm by Kate Parker
With a week to go before we head up to Portland, I figure
now is a good time for an update on how my little guy is
doing. As usual, he's doing well in some ways and not well
in others.
His pain is pretty well-controlled, but we invest more time
each week in keeping it that way, so overall, it's getting
worse (if that makes sense). Also, he goes from his pain
being mild to being in agony without stopping at
"moderate" anymore. What that looks like is he can be
sitting at the computer playing a game and laughing one
minute, then LITERALLY be sliding to the floor, wailing
& holding his head the next minute, crying, "My head
REALLY hurts!" We jump to get his meds immediately &
within 15-20 minutes, he is all right again, but the
suddenness and severity of his pain is always a shock to
both him & us because we really don't get any warning that
it's coming anymore.
He is sleeping a lot more. It used to be that he slept extra
long hours the night after we changed his fentanyl patches,
but now he's sleeping long hours pretty much every night &
into the afternoon/evening of the next day. It's currently
5:32pm and he is not yet awake for the day (he went to
sleep just after midnight).
His voice has gotten hoarse & he squeaks a lot when he
talks. He is stuttering a lot more when he speaks, too ~ like
he is struggling to get the word he wants to say out of his
mouth. That's a chiari symptom.
He toe-walks almost exclusively now. That's a sign of
tethered cord.
He insists there is always something in his right eye. He
asks daily for someone to get "it" out of his eye. There's
never anything there. I wonder if there's something
neurological going on... maybe some deterioration or
something that is causing a sensory misfiring. I honestly
don't know.
He has a very difficult time purposefully swallowing. He is
pretty much only eating soft foods like pudding or ice
cream now and drinking things like liquid yogurt or milk, If
we need him to swallow on command, he has to
concentrate & tip his head down toward his chest to help
him accomplish the task. This can be a sign of chiari.
He can't be carried on our hip anymore because he can't
comfortably spread his legs and lift them up (even with
help). His spinal cord is so tethered it won't allow him to
move very freely anymore ~ he's very stiff through his
torso & hips now.
He has had further bowel & bladder changes, both of which
go along with tethered cord.
His headaches are not only on the top of his head
anymore. Now he has them at the base of his skull,
too. That's definitely a chiari symptom.
His energy level has decreased. It's nothing specific... just
an overall realization that he gets worn out faster than he
did a month ago.
On the "good" side of the equation, Joshua is still happy for
most of his awake hours each day. He enjoys playing
games on the computer or the Wii and building legos with
his siblings. When he feels good, he likes to go with me on
short outings. Basically, when he is happy, he's the same
Joshua he's been for the past year. He just has more
complications right now. A good majority of those
symptoms are associated with chiari & tethered cord, both
of which are conditions that can be treated. It is my hope &
fervent prayer that doing surgery again will help Joshua to
get back to the baseline we've had since December. If it
doesn't work, we'll just continue managing symptoms to the
best of our ability, but I really do believe surgery will help
him again. Assuming Dr. W hasn't changed her mind about
operating, we'll add Joshua to her surgery schedule for
(probably) sometime in mid-to-late July. I have to
coordinate his surgeries with Bethany's (getting a port-acath placed & a bone marrow biopsy) and Hannah's
(getting a new g-tube since she pulled out her mic-key
button during naptime & the stoma closed before anyone
realized what she'd done). Ideally, I'd like to get the girls'
procedures completed before Joshua goes into the hospital,
but in the end, God's timing is perfect, so I'll go with
however He works things out.
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Written June 25, 2012 4:27am by Kate Parker
Joshua's heart rate has been running really low the past two
nights, hanging out in the 30-50 beats per minute range,
which has made for lots of alarms going off during the
night. I keep lowering the parameters on his pulse ox,
thinking I've got it low enough that it won't alarm, but the
blaring "beep beep beep!" wakes me again & again. I am
not comfortable setting the alarm lower than 35 for his
heart rate. Really, the machine shouldn't need to be set so
low, and if his heart is beating that slowly, I want to know.
Still, it's unnerving to hear alarms so frequently at
night. It's been months since that's happened.
His oxygen saturation level has been better than his heart
rate, which is weird since oxygen usually dips before heart
rate in kids, but he's had some big desats, too. The lowest
he's hit was 75% and he dips into the 80's fairly regularly,
too. Last night, though, he had just 4 desats while having 4
times as many episodes of bradycardia. It was really odd to
see him satting at 98% while his heart rate was 40. I am
pretty sure it's caused by his brain stem being wonky, but
still, it's weird to see. At one point, I wondered if the pulse
ox was picking up the signal properly, so I checked
Joshua's pulse manually. I was both relieved & concerned
when I realized that the pulse ox readings were accurate &
yes, Joshua's heart really was beating that slowly.
When he's awake, he's fine. Well, okay, I can't know for
sure that he doesn't have episodes of apnea or bradycardia
because I don't typically hook him up to his pulse ox when
he's awake, but he SEEMS fine. He plays & talks & as
long as we keep on top of his meds & control his pain, he's
happy. It's just when he sleeps that things are looking more
shaky.
He sees his neurosurgeon in 8 days & we'll see what she
thinks & where we'll go from here. I've recently had a few
friends express their disapproval of my intention to put
Joshua through more surgery. Apparently, my sharing that
Joshua said he wants to go to heaven has led others to
believe that this poor little boy is being forced to go on
living in misery because his family refuses to give up & let
him die. That's completely untrue, of course, but I guess I
shouldn't confuse the issue with facts when some people
have got their minds made up.
A few nights ago, Joshua had a headache when I was
putting him to bed & he told Adam and me that he wanted
to go to heaven now because he didn't want his head to hurt
anymore. I calmly told him, "Okay, you can go." He
paused a moment, grinned, then asked, "How do I get
there?" I told him, matter-of-factly, "You have to stop
breathing and your heart has to stop beating." He asked, "I
have to die?" I answered, "Yep. And the instant you do,
you'll be in heaven with Jesus & it will be
wonderful." Joshua thought about that for a minute before
announcing, "Nah, I don't want to die yet! Can I have some
headache medicine?" Adam gave it to him & that was the
end of that conversation.
On Friday evening, when Megan & I were alone with
Joshua upstairs, I asked him, "You know how you
sometimes say you want to go to heaven now?" He nodded
& told me, "Yes." "Well," I told him, "I want you to know
that if you want to go to heaven sooner, we don't have to do
more surgery. If we do surgery, you will probably live
longer. If we don't do surgery, you will go to heaven
sooner. I want to know what YOU want to do, Joshie." He
sat quietly on the bed, thinking. Finally, he asked, "If I
don't get my head and back fixed, I'll go to heaven
sooner?" I affirmed that yes, that is what would
happen. He thought some more, then told his sister and me,
"I want to stay here longer. I want my head to not hurt, but
I don't want to go to heaven yet. I want to have my head
fixed." Megan asked, "So you want Dr. W to do surgery
again?" Joshua answered, "Yes, I want her to fix my
head."
So... to those who worry about Joshua's suffering being
prolonged against his will, please relax. First of all, he's
not suffering these days because we have his pain under
control. Yes, he has times each day when his head hurts &
we have to give extra medication, but the extra medicine is
enough to knock down his pain & give him relief
again. He's generally happy & he is enjoying his life to the
fullest extent he can. Second of all, Joshua is a participant
in discussions that involve decisions that will directly affect
him. I explain the choices to him and I tell him what could
happen as a result of each choice, and then, after I am sure
he understands to the best of his ability, I find out what he
wants to do. As much as I am able, I respect and honor his
decisions. Everyone who is a part of his medical team does.
To those who think I'm really making a bad decision
regarding surgery, let me remind you of something. I've
said it before & I'll say it again: it's really easy to think you
know what you'd do if Joshua were your child, but the
absolute truth is that until you have been in a medical
situation where there is no "guidebook" and no treatment
plan to follow & therefore every decision is uncharted
territory, you DON'T know what you would
do. Really. You can think you do, but you're wrong. It's
easy to make hypothetical decisions when they don't
directly affect you or your child in any way and/or to judge
someone who is making choices that you don't think you
would make in a similar situation. I realize that. I also
recognize that people project their emotions & experiences
onto a situation and that plays into their
reactions. Ultimately, though, I think it's really important
to remember that there is no way you can possibly care
more about Joshua than I do, there is no way you can hurt
for him more than I do, and there is no way you can
possibly know as much about what is going on with him as
I do, so maybe the best thing to do is trust that I am doing
my best for Joshua & that if I make a decision you don't
agree with, that doesn't mean I'm doing the wrong thing
&/or need to be corrected by you. It could mean that I
know more about the situation & therefore can make a
more-informed decision than you. Also, anyone who
knows me knows I don't make big decisions based on my
emotions. I am not going to say "yes" to surgery just
because I don't want my child to die & surgery might
prolong his life. I am not going to say "not" to surgery just
because the thought of putting him through another
operation & the recovery afterward makes me feel sick
inside and I don't really want to be separated from my other
children for a month or longer. It isn't about me. It never
has been. And I don't make medical decisions for ANY of
my children based on my emotional response because I
don't believe I'd make wise choices if I did. So you can rest
in knowing that big medical decisions get debated &
discussed with Joshua's doctors, with Charley, with a few
close friends who will pray over a situation & then bring
their thoughts to the table, and with Joshua, himself. The
pros & cons are weighed & then a decision is made. I
shouldn't have to explain all of that in a journal entry, but I
want people reading this to understand because some of
you are very concerned that Joshua isn't having good
decisions made on his behalf & I want to assure you that
yes, actually, he is.
Anyway... bottom line is this: if you disagree with the
decision of Joshua having more surgery, that's unfortunate,
but please keep it to yourself. Or go ahead and tell
everyone you know what an idiot you think I am, but don't
tell me. I don't want to hear it. Ultimately, at the end of the
day, the only people who have to live with the decisions
made regarding Joshua's treatment are his doctors, my
husband, my other children, & myself... not you. As such,
we will make decisions that allow us to do that.
I appreciate the support that people offer. I am SO grateful
for the prayers and kind words offered up by so many who
read both Joshua & Bethany's caringbridge journals. I
know there's always going to be bad that mixes in with the
good and that's just what happens when a person chooses to
share aspects of their life on a public site, but ya know, as
things get increasingly challenging with Joshua (and
Bethany), I need support & encouragement more than
ever. I'm not telling you that you can't have a differing
opinion from me. You totally can! I am, however, asking
that you consider whether your words ~ be they spoken or
written ~ will help or hurt, and if they aren't going to help,
then perhaps you should keep them to yourself. Taking
care of two medically-fragile children is hard enough
without having to deal with well-meaning but hurtful
comments on top of it.

Written June 17, 2012 6:05pm by Kate Parker
Joshie is about the same. Good days are good & bad days
are bad. He's sleeping more, but I guess that's to be
expected considering how much oxycodone he's getting
these days. I am currently sitting in a hospital room with
Bethany. I called home a few minutes ago to inquire how
my little boy is and Adam told me Joshua had woken at
11:30am complaining of headache & he went back to sleep
at 2:30pm. He generally sleeps more the day after we
change his fentanyl patches & we changed them last night,
so I was surprised to hear that he woke up before noon. As
such, I wasn't surprised to hear that he had fallen back to
sleep so soon. Still, he's had several days of sleeping 19-21
hours this past week, which makes me sad.
In other news, I finally updated Bethany's caringbridge
page. She's turning out to be as medically complicated as
Joshua, which is tough. Okay, "tough" is really not the
right word, but in the interest of not wanting to get
emotional right now, I'll stick with that adjective. Her link
is at http://www.caringbridge.org/visit/bethanyparker for
those who want to keep up on what's going on with my
Bethiebean.
My oldest daughter, Megan, will stay with Bethany at the
hospital tonight while I go home to be with my other kids
and then I'll come back tomorrow. It's a blessing to have
two adult-aged kids who are happy to help out when life
gets complicated.
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Written June 14, 2012 1:49am by Kate Parker
Apnea & bradycardia started back up in earnest two days
ago (the night of the 11th, to be exact). Joshua regularly
desats to the mid-70% for oxygen and his heartrate drops
into the 40's. He's having more suboccipital (base of the
skull) headaches now, too. Hello, Chiari. We've missed
you. NOT!!! We've got his pain under control for the most
part, though it's requiring a lot of rescue doses to do so.
I'm not shocked by the symptoms. Not anymore. They
started & my very first thought was, "Oh, I guess he's got
enough scar tissue in there now to be causing trouble. Good
thing we're seeing Dr. W in a few weeks."
I'm not nonchalant about this. If I allow myself to think
about it, I feel nauseous. I just don't have the ability to
dwell endlessly on what's happening with Joshua because
Bethany is also quite ill & in the past few days, her
specialists have put their heads together & come up with
some unpleasant conclusions. I need to update her site, but
haven't figured out how to explain everything yet. There is
no way to put it in an ultra-condensed nutshell, but suffice
to say that we spent 5 hours at the hospital today so
Bethany could have blood tests for "cancer markers", an
abdominal ultrasound to evaluate for either malignancy or
other abnormality that might explain her pain there, & an
IV infusion of methylprednisolone (steroids) because after
just 2 weeks off steroids, her systemic arthritis is flaring
again & they have to knock her immune system back
down. I was told yesterday that her disease is severe and
out of control, which is not what I wanted to hear with
regards to a child who needs open-heart surgery & tethered
cord surgery but cannot have either procedure until she has
been off steroids (and remained stable) for 2 months. I was
also told she is high-risk for leukemia after the hematology
oncologist (heme-onc) evaluated all of her blood tests from
the past 18 months. Oh, and just before leaving the
hospital this afternoon, I was handed a copy of some of the
lab results that had come back already (they were all 'stat'
labs) & one of the cancer marker tests was abnormally high
(as in the normal range is 90-210 mg/dl and Bethany's
result was 622 mg/dl). So yeah.... my concern for Joshua is
mixed with my concern for Bethany. Having two
medically-fragile children is tough on a good day. It's
brutal when they are struggling simultaneously with vastly
different symptoms & needs. I don't have the time to cry,
nor do I have the luxury of falling apart right now. I'll
schedule my breakdown for a later date. <weak
grin> Seriously though, I'm getting through by the grace of
God & the strength of Christ as He enables me to "do the
next thing", whatever that may be. I am strangely calm
about all of this, which I have to attribute to the peace that
passes understanding. Either that or I am incredibly
emotionally numb. Calling it "peace" sounds so much
better though, don't you think? :D I know me, though, and
once I know what we're facing for Bethany & Joshua, I will
cope better. I just really dislike being in limbo where we
(doctors & myself) KNOW there's a problem, but we don't
yet know what it is and/or what we're doing to do about it.
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Written June 11, 2012 4:05pm by Kate Parker
Heard back from neurosurgeon, who wants to see Joshua &
talk about scheduling surgery. She will be out of the office
for two weeks beginning tomorrow, so the first
appointment slot available is June 26th. I asked if I could
schedule Joshua for the same day as Bethany a week later
so that I am making just one trip & was told that wouldn't
be a problem, so Joshua will see Dr. W on July
3rd. Bethany will be seeing 4 of her specialists over 2 days
& Joshua will probably also see his palliative care doctor
while we're up there. It'll be a busy two days for sure, but
hopefully we'll come home with definitive plans for both
kids.
I was asked (in the guestbook comments) what the
disadvantages of doing surgery are. Honestly, as far as I
know, there are only 2: he could die (not just from
anesthesia risk, which I *think* is still pretty low, but from
the risk of his brain stem not tolerating being messed with
during surgery as his spinal cord is manipulated & thus
causing Joshua to stop breathing or his heart to stop
beating) or he could have a really difficult recovery & then
come home worse-off than prior to surgery.
From my perspective (and that of his neurosurgeon), those
are not piddly disadvantages and that is why we are being
very careful to assess when is the right time to attempt
surgery. We know surgery is the only option available for
possibly improving Joshua's quality of life for any length of
time and that without it, all we can do is manage symptoms
until the end of his days on earth. We know that
eventually, surgery will not be an appropriate option to
pursue. For now, everyone on Joshua's team agrees that
what he stands to gain from surgery makes the risks worth
taking. It just becomes a matter of when to do it. We all
agreed a couple of months ago (when Joshua had MRIs)
that we should wait until his quality of life declined to the
point that he was not able to enjoy much of his awake
time. On days like yesterday, I am convinced we're at that
point. On a day like today, where he's not needing as much
breakthrough medication (still more than his palliative care
doctor wants him needing, though) and he's not crying &
miserable, I am more inclined to wait a little longer. It's a
tightrope of sorts that we (Joshua's medical team & I) are
balancing on as we try to give Joshie the best quality of life
for the longest amount of time that we possibly can. In 3
weeks, we'll reevaluate & go from there.

Written June 11, 2012 4:05pm by Kate Parker
Heard back from neurosurgeon, who wants to see Joshua &
talk about scheduling surgery. She will be out of the office
for two weeks beginning tomorrow, so the first
appointment slot available is June 26th. I asked if I could
schedule Joshua for the same day as Bethany a week later
so that I am making just one trip & was told that wouldn't
be a problem, so Joshua will see Dr. W on July
3rd. Bethany will be seeing 4 of her specialists over 2 days
& Joshua will probably also see his palliative care doctor
while we're up there. It'll be a busy two days for sure, but
hopefully we'll come home with definitive plans for both
kids.
I was asked (in the guestbook comments) what the
disadvantages of doing surgery are. Honestly, as far as I
know, there are only 2: he could die (not just from
anesthesia risk, which I *think* is still pretty low, but from
the risk of his brain stem not tolerating being messed with
during surgery as his spinal cord is manipulated & thus
causing Joshua to stop breathing or his heart to stop
beating) or he could have a really difficult recovery & then
come home worse-off than prior to surgery.
From my perspective (and that of his neurosurgeon), those
are not piddly disadvantages and that is why we are being
very careful to assess when is the right time to attempt
surgery. We know surgery is the only option available for
possibly improving Joshua's quality of life for any length of
time and that without it, all we can do is manage symptoms
until the end of his days on earth. We know that
eventually, surgery will not be an appropriate option to
pursue. For now, everyone on Joshua's team agrees that
what he stands to gain from surgery makes the risks worth
taking. It just becomes a matter of when to do it. We all
agreed a couple of months ago (when Joshua had MRIs)
that we should wait until his quality of life declined to the
point that he was not able to enjoy much of his awake
time. On days like yesterday, I am convinced we're at that
point. On a day like today, where he's not needing as much
breakthrough medication (still more than his palliative care
doctor wants him needing, though) and he's not crying &
miserable, I am more inclined to wait a little longer. It's a
tightrope of sorts that we (Joshua's medical team & I) are
balancing on as we try to give Joshie the best quality of life
for the longest amount of time that we possibly can. In 3
weeks, we'll reevaluate & go from there.
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Written June 11, 2012 1:15am by Kate Parker
Well, that didn't last long. Five days. Five days of feeling
really good before we were back to Joshua complaining of
severe head pain & we were scrambling to get him feeling
okay again.
The past 5 days have been really wonderful. As my friend,
Basia, commented in the guestbook, Joshua was feeling
great & was able to play & enjoy being a little boy
again. When his friends came over, he joined in the fun,
even venturing out into the backyard to be part of the
action. He was even able to "run" in his funny little way,
which was adorable to watch & would bring a smile to the
face of anyone who saw him. He was requiring just 2-3
extra doses of oxycodone each day in addition to his
regular meds to keep him pain-free. It was blissful.
I think that is why I feel so shell-shocked tonight. I did not
think we'd be back to his head hurting & him whining as he
laid in my lap, wriggling around as he tried to find a
comfortable position, so soon. With the adjustments we
made in his meds, I truly believed he'd be "good to go" for
awhile. Maybe a month. Maybe even a little more, or
perhaps a little less, but definitely not just 5 days.
Five days. Why only five days???
Where do we go from here? I don't really know yet. I still
haven't heard from our neurosurgeon or her P.A. I put calls
in on May 31st & June 5th. I know they had a brutal week
filled with 7 brain tumors in 7 days, so I extended grace &
determined to wait patiently for a return call. It'll come; it
always does. Dr. W is out of the office for the next two
weeks, so I anticipate hearing from her P.A. sometime this
week. If I haven't heard from her by Tuesday afternoon, I'll
call again. I need to know what they think of this situation
& what they think we ought to do.
You want my opinion? I think we need Dr. W to clean out
Joshua's back & head. I think he needs to be detethered &
decompressed. I think he's reached the point where his
spinal cord is so stuck in scar tissue that it's stretching &
pulling his brain stem downward. I think there's going to
be no end to his increasing pain until the tension is
removed from his spinal cord & the pressure on his brain is
reduced again.
Hopefully I'll hear from Jenny soon so I can compare my
opinion against Dr. W's & hers. There has to be
*something* we can do to give Joshua more than 5 good
days at a stretch. I pretty much am not ready to believe
anything else, so if you think I'm living in la-la-land, do me
a large favor & don't tell me. If it turns out there's nothing
we can do, I'll find that out soon enough. For now, I'd
prefer to believe that there's still options out there & it's just
a matter of deciding with Joshua's specialists which one(s)
we should pursue.
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Written June 6, 2012 12:08am by Kate Parker
After almost doubling his oxycodone dosage & actually
doubling his methadone dosage (and keeping his fentanyl
dosage the same), I'm happy to share that Joshua had a
really good day. He's needed only a few rescue doses of
oxycodone today & was able to play with his friend this
evening without any pain.
*big sigh of relief*
I'm not celebrating quite yet, but give me a couple more
days like today & then I definitely will be. :)

Written June 3, 2012 2:34pm by Kate Parker
The 150mg scheduled doses of oxycodone aren't cutting it.
It HELPS, but it's not enough. About 20 minutes after
getting a 150mg dose, Joshua is saying his head still hurts
very badly, so he gets another 90mg & that makes things
"mostly better" (his words), but then he has to wait 2 hours
before he can get anything else and sometimes that's okay,
but other times, not so much. I think we'll definitely have to
go up on methadone again. *sigh*
I've been trying to figure out what happened while we were
in Portland to suddenly jack up Joshua's pain level. Maybe
he grew, which stretched his spinal cord (that is stuck in
mounds of scar tissue & therefore can't move freely)
more. Maybe the degree that his brain stem is being tugged
downward by his tethered cord increased just enough to
cause the pain explosion. Or maybe the amount of scar
tissue accumulating in the back of his skull increased
enough to be obnoxious to him. I don't know. I won't
know until the day comes where Dr. W opens up Joshua's
head and/or back & takes pictures with her intraoperative
camera to show me what's going on inside my child's
body. For now, all I can do is try to manage symptoms,
which is proving to be a bit more complicated than
usual. And that, in turn, is frustrating & disappointing &
more than a little discouraging. I am hopeful that increasing
his methadone, which I'll do after getting permission from
the pediatrician, will work (I know my request will be
approved since Dr. T had given recommendations to
increase the methadone if the increase in oxycodone wasn't
enough). Something has to help eventually, right?
I had someone ask (very kindly) if I would explain why
Joshua's condition is considered terminal. She has been
reading his journal for awhile, but still doesn't understand,
exactly, why he is going to die young. It made me think
that if this sweet lady has questions, there are probably
others who do, as well, so I'll try to explain what's going on
with Joshua in a simplified manner, not to insult anyone's
intelligence, but to enhance understanding.
Joshua has a chromosome abnormality that causes his brain
stem to not function properly. The brain stem is what
makes a person breathe, their heart beat, controls their body
temperature and other involuntary things in the body
(called autonomic responses). Every signal that gets sent
out of the brain to the body (like "pick up that fork" or
"scratch your nose" or "wiggle your left foot") AND every
signal that gets sent to the brain from the body (like "this
tastes sour" or "the stove is hot" or "dinner smells good")
goes through the brain stem. When the brain stem is not
working properly, signals don't always get through, or
messages get mixed up, or sometimes signals don't get sent
out at all. When the lungs don't get the signal to inhale or
the heart does not get a signal to beat properly, that is lifethreatening. Joshua's repeated episodes of apnea (where he
temporarily stops breathing) and bradycardia (where his
heart beats too slowly) have been caused by his brain stem
not functioning the way it should. Because of his
chromosome abnormality, his brain stem could stop
working at any time, which would result in his death.
Joshua ALSO has a connective tissue disorder that causes
him to make too much scar tissue inside his body when he
has surgery (it also makes him more flexible than the
average person). This would not be a big deal for most
people since most people do not have a lot of surgery in
their lifetime. Joshua, however, was born with spina bifida,
which meant he had a big surgery on his back when he was
just a few days old. His body made a lot of scar tissue after
that surgery, which stuck to his spinal cord and to the bones
of his spine. Since the spinal cord is supposed to float
freely within the spinal canal, having his spinal cord stuck
to scar tissue meant that as Joshua grew, the spinal cord got
stretched. Stretching a spinal cord results in nerve damage
and pain as the nerves get stretched. If the spinal cord does
not get unstuck quickly enough through surgery, allowing
the nerves to resume their proper shape & position, the
nerve damage becomes permanent. The nerve damage is
primarily in the legs, feet, bladder and bowel. Joshua was
born with completely normal sensation and function in his
entire body. After years of the nerves of his spinal cord
getting stretched, Joshua now has very little sensation in his
legs and feet, and his bladder & bowel do not work the way
they should. That damage is permanent. It is why he uses
a wheelchair whenever he leaves the house and why he
could never be potty-trained like a normal kid.
Joshua ALSO has a chiari malformation (type 1). This
means that the bottom part of his brain has gotten squeezed
out of his skull and hangs in the uppermost part of his
spinal canal. Joshua's chiari was severe enough that it
blocked the flow of fluid around his brain. That caused a
lot of pain and pressure got built up in his head, so he had
to have his first brain surgery when he was 13 months old.
After his first back surgery, Joshua's body made way too
much scar tissue because of his connective tissue
disorder. That resulted in his spinal cord getting stuck to
scar tissue, which did not let it move freely and caused pain
& nerve damage as it got stretched when Joshua grew, and
that resulted in Joshua needing another surgery to remove
the scar tissue so that his spinal cord could move again.
After Joshua's first brain surgery, his body made way too
much scar tissue because of his connective tissue disorder.
That resulted in the bottom part of his brain (his
cerebellum) getting shoved up against his brain stem by
scar tissue pushing against his brain. That, in turn, blocked
the flow of fluid in his brain once again, which caused pain
and pressure build-up. That meant Joshua had to have
another brain surgery to remove the scar tissue and get his
cerebellum moved away from his brain stem.
After a few years of this cycle (multiple surgeries), Joshua's
brain stem had been squished too many times and we
started seeing signs that it was not working properly. It
was not working properly because of his chromosome
abnormality, which was officially diagnosed on March 25,
2011.
Joshua's chromosome abnormality should have killed him
by the time he was around 1 year old (all literature on this
particular chromosome abnormality shows kids not living
much longer than 1 year of age). BECAUSE he also has
chiari and spina bifida and a connective tissue disorder, he
got surgery that other kids with this chromosome
abnormality never have. It has been the repeated surgeries
that Joshua has had that have enabled him to live as long as
he has, but in the end, his brain stem not working properly
will kill him.
Joshua's geneticist gave me an analogy the day he had to
tell me that Joshua had a terminal condition. It helped me
to understand and I think I've shared it before, but I will
share it once more because it might help those of you who
"get" word pictures better than straight explanations. What
Dr. A told me is this: If a house has a cracked foundation,
many cracks and fissures will appear in the house, itself. A
person can repair the cracks and fissures in the house, but
ultimately, the house can never be fixed because the
foundation it is built on is defective. Joshua's foundation is
defective. His house has many cracks and fissures (chiari,
connective tissue disorder, spina bifida, tethered cord). We
can do surgery over & over, but we will never fix Joshua
because the underlying chromosome abnormality can not
be repaired. THAT is why we have watched Joshua
decline, slowly, the entire course of his lifetime.
When Joshua began having serious problems caused by his
brain stem not working properly (breathing, heart rate), we
realized his condition was worsening. Last July, his
neurosurgeon had said there was nothing more she could
do. She did not think more surgery could help
Joshua. When she made that decision, Joshua's medical
team decided the best option was to move Joshua to
hospice care. No one believed he would live to see
Christmas. Without any more surgery to remove the buildup of scar tissue in his head, he would have died by the end
of 2011, and in fact, he was worsening substantially as the
weeks went by. But then, at the end of October, when
Joshua begged Dr. W to do something to get rid of the
"ball" pain he was feeling in his head, she changed her
mind about not doing more surgery and told me to bring
Joshua up to Portland, saying that she could not stop him
from dying, but he did not have to die in horrible
pain. Joshua had 3 brain surgeries during the first two
weeks of November and spent the month in the hospital
before coming home, which has allowed us to have 7 more
months (and counting) with Joshua. This is time that NO
ONE thought he would have, and if he had not had the
surgeries in November, he would not still be alive. We
know that with 100% certainty.
Joshua will have increasing pain caused by his brain stem
deteriorating ~ it is getting folded as time goes on ~ and
that pain will be made worse as his spinal cord continues to
be stretched and tugs his brain stem downward and as the
scar tissue in his brain accumulates and pushes his
cerebellum against his brain stem. If Dr. W does not do
more surgery, Joshua will die when his brain stem stops
working & that would be expected to occur sooner rather
than later because of the increasing pressure against his
brain stem and its not working correctly. If Dr. W does do
more surgery and Joshua survives & recovers, we will
hopefully get more good time with him like the months we
have had since November.
It may be asked why we cannot continue to do surgeries
and thus keep Joshua alive for years and years. I have
asked the same question and I was told that because Joshua
continues to decline in-between surgeries (losing skills and
muscle function and the like), eventually he will get to a
point where surgery will not be an option anymore. His
brain stem will continue to deteriorate, regardless of how
many chiari or tethered cord surgeries we do, so we (his
neurosurgeon, pediatrician & I) are walking a fine line in
trying to make sure that we do not push surgery if it is not
going to benefit Joshua in any way. Also, his need for
increasing amounts of pain medication could eventually
lead to him having breathing problems as a side effect of
the medication (narcotics/opioids can make a person stop
breathing). It could make him sleep around the clock and,
if his dosages increase faster than his tolerance does, he
could eventually die from side effects of the medication
necessary to control his pain. So... either way, Joshua can't
have a normal lifespan. It is just not in God's plan for him.
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Written June 2, 2012 1:51pm by Kate Parker
Joshie saw his pediatrician yesterday. He's 49.6 inches tall
& 58 pounds. :)
Dr. S called Dr. T (palliative care) & put the call on speaker
phone so I could listen in. After reviewing the amount of
oxycodone Joshua has been getting, Dr. T increased his
scheduled dose from 90mg to 150mg every 4 hours. We're
keeping rescue doses at 60-90mg, every 2 hours as needed
for breakthrough pain. We also received permission to
increase Joshua's methadone to 10mg twice a day (he will
still get 25mg at midnight ~ we change just the daytime
doses), but we aren't doing it unless the increase in
oxycodone isn't enough.
Joshua received the increased dose at 8pm last night &
went 4 hours without needing a rescue dose, so I have high
hopes that this huge increase is going to be all he needs to
keep things "good" for awhile longer. As much as I would
like him to have his spinal cord detethered & have the scar
tissue cleaned out of his head, I'm not in any rush to do
surgery until we're at the point where Joshua's quality of
life is lousy & we can't improve it with medication. Last
night, we had friends over for dinner & Joshua was able to
play with his friend, Ethan, & have fun without crying
because his head hurt. It brought me a lot of joy to watch
the boys together, especially after the past few days of
Joshua being so utterly miserable.
I haven't yet heard from Dr. W (neurosurgeon), so I don't
know what her thoughts are on this topic, but if Joshua
continues to be comfortable on the increased dose of
oxycodone, I will send her some video clips showing how
he is able to play & enjoy himself (ie: has quality of life)
and I suspect that will assure her that we can continue to
wait before we move to do anything surgically.
I'm feeling cautiously optimistic today as I wait for Joshua
to wake up for the day & can assess how he is doing. For
him to have gone 4 hours last night without the horrible
pain he's been experiencing was such a relief (for him AND
our family) & I am SO hoping that we're now on track to
have more happy times again.
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Written May 31, 2012 2:50pm by Kate Parker
Late last night was awful. Joshua was hurting so badly that
he could not stop crying (that, in & of itself, is
tremendously disturbing because he doesn't cry in pain very
often, so we know it's REALLY severe when he does) and
he said he wanted to go to heaven right now. Adam,
Megan and I were with him as he folded his little hands &
prayed that Jesus would let him go to heaven right now.
I gave him another 90mg of oxycodone, some Benedryl to
counteract itching, and then Adam, Megan & I sang to
Joshua for awhile. Before he went to sleep, he said he
didn't want to go heaven right now, but he wanted his head
to not hurt. He told us things he still wants to do before he
goes to heaven. Then he went to sleep.
For the first night in a couple of weeks, he had absolutely
no apnea. His oxygen saturation level stayed above 90%
all night long. He's still sleeping right now, so I can't
assess how he's feeling today.
I hesitated sharing that story about Joshua praying to go to
heaven because I know there will be people who say,
"See? He is done fighting this. Stop making him hang
on. Let him go." Yes, people send emails saying these
things. I understand that their perspective comes from not
wanting to hear about Joshua continuing to hurt, but I think
it's really important to realize that even if I said, "Okay,
Joshua, you can go," it's not like he would suddenly stop
breathing & die. I have zero control over when he
dies. While he's still living, I have to do what I can to help
him stay comfortable. Last night, he wasn't dying. His
heart was beating strongly, his breathing was normal. His
head hurt so much he wished he could go to heaven so that
he wouldn't hurt anymore, but the pain, in & of itself, was
not going to kill him. Also important to remember is that
when Joshua is not hurting, he has many things he wants to
do. He is not laying on a couch, suffering, for 24 hours
every day while we, his family, refuse to medicate him to a
level that would remove his pain & would hasten his
death. That is NOT the reality here. When Joshua's quality
of life has diminished & he is tired of fighting, then how
we approach his care will be different. We are not at that
point yet, however, so we will continue trying to help him
achieve pain-free status so that he can continue to enjoy his
life to the fullest extent possible.
With that goal in mind, I called Dr. T, (palliative care doc)
& he said that before he can make any further medication
adjustments, he wants neurosurgery to weigh in. He said
that if Dr. W says this is not something she wants to
address surgically, then we will need to re-evaluate things
& change what we're doing for Joshua. Dr. T said if that's
the case (if Dr. W doesn't want to do surgery yet), then he
will want Joshua to see the neurologist & the pain
management doctor so they can also weigh in with their
opinions before he gives the final say on what we are going
to do.
He said that with Joshua being a mystery wrapped up in an
enigma surrounded by a puzzle (compounded by him being
the only child in the United States with this condition),
there is no one who knows for sure what we should be
doing. As such, making the best possible decisions in a nowin situation are getting increasingly more difficult. That's
really not what I wanted to hear, though I appreciated his
honesty.
I called Dr. W's office & left a voicemail for Jenny, her
P.A., telling her what Dr. T said & asking her to please call
me.
Joshua goes to see Dr. S (his pediatrician) tomorrow. She
will be calling Dr. T (speakerphone conversation in her
office so I can be part of it) & I am praying I'll have heard
from Dr. W prior to the appointment so that I can let him
know what she wants to do.
I just want him to feel better... to get his pain controlled so
we can continue to spend time with him that is fun &
enjoyable for him. He doesn't seem like he could die any
time soon, but I can't honestly say I know what that will
look like. I guess I have always assumed Joshua's apnea &
bradycardia would get a lot worse and that would give us a
"heads up" that things were getting to the critical
point. That's not happening right now, though (and no one
knows why since that is what we've seen occur since
January, 2011); instead, increasing pain mixed with
decreasing overall function is what is occurring. Whether
or not this is the "typical" thing to occur at this stage of the
game with Joshua's chromosome abnormality is unknown,
so we don't really have any idea what to expect. That
contributes to the difficulty everyone on Joshua's medical
team has with making treatment decisions. At this point,
though, we're all still on the same page & have the same
goal: to maximize Joshua's quality of life for as long as
possible. As such, I am hopeful that tomorrow's
appointment with Dr. S & the phone conversations with Dr.
W & Dr. T will yield a plan that will prove to be a good
one for my little man.
P.S. To those who would want to email me after reading
this journal entry to tell me how selfish I am to not "let
Joshua go in peace", please don't. You have never been in
this position with one of your children (if you even have
children) and, because of that, you honestly have no idea
what you would or would not do if you were in my
shoes. No one likes to hear about a child suffering with as
much pain as Joshua experiences. I understand
that. Believe me, watching a child suffer is a lot harder
than just hearing about it. But you are not here, living this
reality, so I ask that you would please try to trust that I am
making the best decisions for Joshua that I possibly can,
even if they aren't the ones you think you would make for
your child. Prayerfully, you will never have the
opportunity to see how you would actually behave in the
same situation & to learn firsthand how difficult it
sometimes is to explain in a journal entry all of the nuances
that come into consideration when major decisions for your
child's medical care are being made.
To those who offer unwavering support & encouragement,
regardless of what your personal feelings are on the topic
(ie: if you think you'd do things differently), thank
you. There are days when the comments here help me to
keep going & give me comfort in knowing that so many
others care about my little boy.

Written May 31, 2012 1:51am by Kate Parker
We have lost the ability to keep Joshua pain-free.... ever....
despite increasing his methadone dose again & increasing
the amount of oxycodone he gets daily. He's getting huge
amounts of oxy (upwards of 300mg every 2 hours), yet he
still hurts a lot. He's actually sleeping LESS (down from
averaging 18 hours a day to about 12). I know that sounds
like a good thing, but the reason he's not sleeping as much
is because his head hurts so severely, it wakes him, and that
is not a good thing because he registers more pain when
he's tired (you understand the vicious cycle here?) . He's
also experiencing intense itching as a side effect of the
opioids. That's a common side effect, but not one he's ever
had. It's extremely annoying to him, but Benedryl helps, so
he's now getting that around the clock.
I'll be taking Joshua to the pediatrician's on Friday. She
will be conferencing with his palliative care doctor to
determine what we can do to get Joshie's pain back under
control again. As of right now, I have no idea what the
plan will be. Maybe Dr. T will want to jack up the
methadone doses, or maybe he'll tell us to crank up the
oxycodone. Maybe it's time to increase Joshua's fentanyl
patch dose. Or maybe he'll tell me we need to change some
of the meds completely, which would necessitate a
hospitalization in Portland to wean him off old meds while
titrating new ones to therapeutic levels. I honestly don't
know what Dr. T is going to say. As long as he has some
idea of something to try, however, I'm listening.
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Written May 27, 2012 4:27pm by Kate Parker
We got home without incident & life has continued on as
usual. In typical fashion, Joshua is pretty stable while
Bethany struggles, but I'm thankful that they aren't both
having serious problems simultaneously. Having been
through that once before, I'm in no rush to to do it again.
I want to put an album together of pictures from our trip to
Portland, but I haven't yet found the uninterrupted time to
do it. Even now, I have an adorable 2 year old climbing on
me as I attempt to type. :) Eventually, though, I should be
able to get it done & then I'll share with you all. For now,
you can go to the CCA's Community Hero page on their
site to read about all of the 2012 Heroes. Joshua is about
2/3 down the page.
Now that I've got some breathing room with Joshua, I have
found myself feeling sad at times for no real discernible
reason. Sometimes it's easier to deal with life when I don't
have a lot of downtime to really THINK about anything
other than getting through the day. When there are stable
times with no crisis happening, all the things I don't want to
deal with but now have no excuse not to come swimming
to the surface & it is really exhausting & I'm not really sure
why that is.
Have you ever wanted to hole up by yourself, away from
kids, so you could allow yourself the luxury of not having
to deal with life for awhile? That's how I feel these
days. It's probably not the healthiest desire in the world,
but that doesn't really change anything. Most of the time, I
love being a mom to 9 kids & I am happy doing my
multifaceted job. There are times, however, when trying to
balance the needs of my 7 healthy kids while taking care of
their 2 medically-fragile siblings is overwhelming. When I
am feeling overloaded, all that I have to do (mostly by
myself because my husband works insanely-long hours &
leaves the medical stuff, homeschooling & management of
the house to me) seems crushingly impossible. Sometimes I
feel like I'm doing okay. Other times, like now, I am fully
aware of how many things are slipping through the cracks
& it leaves me feeling like an utter failure. Then I want to
give up & run away for awhile. I know I can do all things
with Christ, Who strengthens me (Philippians 4:13), but
sometimes that head knowledge doesn't quite penetrate to
my heart. Sometimes I flat-out suck at turning to God
when things are hard & I'm sure that contributes to my
feeling lousy, too.
I wish things were different. I wish Joshua was healthy &
that I was like the majority of people who never have to
think about hospitals & surgeries & chronic illness & the
death of their child. I wish that I could do things like take a
trip to the beach with a friend to relax & recharge. I don't
want to leave Joshua right now & I wouldn't (and no, I
don't resent him for needing me), but I do wish life's
circumstances would allow for me to get away when the
opportunity to do so presents itself.
I'll get over my pity-party. I know that's what this is and I
know it's not pretty. You know what, though? It happens
& I can admit it. I don't believe there is any mother out
there who has cared 24/7 for a chronically-ill child and
NOT felt sad at times & wished their life were different.
Sometimes my emotions that go along with this journey are
ugly. I refuse to pretend otherwise. I'd like to be seen as a
strong, faithful Christian who embodies the traits of a
Proverbs 31 woman, but I'm not that person yet.
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Written May 23, 2012 11:11pm by Kate Parker
Copied from Facebook:
"Back at the motel. The unveiling of the wall was...
powerful. I guess that's the best adjective. Four Heroes
(kids) did not survive to attend the ceremony, so their
parents were there in their stead. That broke my heart
because I remember wondering (in December) if Joshua
would be alive to attend the unveiling in May. I felt so sad
for those parents who so recently lost their beautiful kids.
Joshua had a hard time ~ lots of people, lots of noise = too
much input for him to process. We ended up giving him
330mg of oxycodone in the space of 2 hours & that barely
kept him "okay" to get through the event. He rallied briefly
for the dove release & enjoyed some cotton candy-flavored
ice cream, but then was ready to come back to the motel to
rest.
It was beautiful & touching & emotional & just so, so
special. A true honor for our little boy to be chosen
amongst a group of amazing kids to represent the thousands
who battle life-threatening conditions every day. I'll share
more pictures later, but this is one I took from the Wall of
Courage."
We'll be heading home tomorrow. For tonight, it's more
swimming & then packing up. Thank you for praying for
Joshua (and the rest of my family) ~ overall, things went
really well & I am SO thankful for the blessing of so many
wonderful experiences & memories that my kids were able
to mint with their brother.

Written May 21, 2012 10:33pm by Kate Parker
We made it safely to Portland and are comfy & cozy in our
2 suites at a lovely motel (hotel?). Charley & I will be
taking the kids to swim in the pool in a bit, but he & Adam
are at the store to pick up a couple items that we forgot
(juice, mayonnaise, ketchup), so I've got a few minutes to
update here. :)
Joshua traveled *beautifully*. For the first time in as long
as I can remember, he stayed awake for the entire 4.5 hour
trip! He did have some bouts of pain, but quicklyadministered doses of medications worked to get things
under control and he was able to continue happily
interacting with Emily, David & Adam (those are the kids I
had in my car; Charley had the others in his ~ with Joshua's
wheelchair, I can't haul a lot of kids in the van anymore). It
was so much fun hearing Joshie laughing & chattering
away behind me as I drove. I loved it!
He's excited to go to the pool, but it's obvious he is getting
really tired. I'm going to take him down for a short time &
then leave Charley, Megan & Adam with the little kids
while I bring Joshua back up to the room to go to sleep. I
think he's going to be more than ready for bed very soon!
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Written May 21, 2012 3:15pm by Kate Parker
We're heading out, but I wanted to let everyone know that
Joshua is feeling much better. Thank you for praying for
him. Please continue to cover him in prayer this
week. Thank you SO SO SO SO SO SO SO much!!!
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Written May 20, 2012 7:08pm by Kate Parker
Please pray for Joshua. He had a sudden increase in pain
last night that had him holding his head & crying. He said
that ball fell back in his head & won't leave... that the pain
feels like a ball in the top of his head. He wanted Sarah
(one of my FB friends) to bounce it back to the moon like
she did last November, so she said she would bounce it past
a meteor & past the stars into a black hole for him. You & I
know, however, that this is a matter for God, and I also
believe it's an attack by the devil against my little boy AND
my family since we are leaving tomorrow to take the kids
to the zoo on Tuesday, to OMSI on Wednesday & to the
Community Hero celebration on Wednesday evening.
PLEASE PRAY with us that Joshua won't hurt & that he
will be able to ENJOY this trip & especially the
Community Hero celebration, where he's being honored.
This is a really big deal to my family... it's a big honor for
Joshua & we want him to be able to be happy, not spend
the time hurting terribly with us not able to get his pain
under control (which is what happened last night & we've
been battling this afternoon since he woke up at 3:30pm).
Please pray. Please please please.

Written May 19, 2012 1:43pm by Kate Parker
Do you remember when I shared that Joshua had been
chosen as a Community Hero by the Children's Cancer
Association here in the Pacific Northwest? Community
Heroes are defined on the CCA website as "An exceptional
group of 25 children and teens who represent the thousands
who battle life-threatening illnesses with strength and
grace. The Heroes reside in Oregon and SW Washington,
and were nominated by the medical professionals who
work one-on-one with them." The site also shares that
"Our Community Heroes are featured on a traveling
educational exhibit."
Joshua had a photo shoot with a professional photographer
several months ago and this Wednesday is the unveiling of
the exhibit, appropriately named "The Wall of
Courage". Our family will travel to Portland to attend the
ceremony & attend a reception afterward. Joshua will
receive an award & there will be some special surprises,
too. I'll share more after Wednesday.
When we did the photo shoot, Joshua was struggling,
which left me wondering if he would make it to the May
23rd unveiling of the exhibit. I am so thankful that he
has. Yesterday, Megan & I were talking about how it's
been 6 months since Joshua's last brain surgery & how
amazing it is that he is stable right now. His pediatrician
told me that NO ONE amongst Joshua's medical team had
thought he would still be alive to see his 6th birthday, yet
here he is, still enjoying his life to the fullest that he is
able. Granted, his "normal" doesn't look like the typical
kindergartner's normal, but compared to what Joshua
looked like last October before having the 3 surgeries that
God used to extend his life, how Joshie is these days is
completely amazing. Each time we see declines in his
skills or his pain gets worse & we scramble to find a better
balance with his medications once more, we're reminded of
how fragile he truly is, which makes being able to find the
"sweet spot" that allows him more time of stability even
more of a blessing.
As we travel to Portland to honor our little hero, I will give
thanks to the Lord for allowing Joshua to go with us in
body, not just in spirit. Would you please pray that Joshua
will travel well, tolerate the changes in his routine, have
pain that is controlled & that he will be able to thoroughly
enjoy the ceremony on Wednesday? I am so hopeful that
this will be a wonderful experience for him & a time of
making some really special memories for all of my kids.
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
Written May 14, 2012 2:53pm by Kate Parker
Yesterday was a fabulous day. Aside from needing a
couple extra doses of oxycodone in-between his scheduled
doses, Joshua was pain-free & the happiest he's been in
soooo long! He needed one rest period during the day, but
was otherwise awake, alert & happy. He was more quiet
than normal, but it was not due to pain or unhappiness. He
woke up & was carried downstairs by Megan, who brought
Joshua over to where I was sitting on a couch in the family
room so he could give me hugs, kisses & wish me Happy
Mother's Day. Let me tell you, after all of the hugs, kisses
& well-wishes from Megan, Adam, Emily, David, Sarah,
Isaac, Bethany & Hannah, getting loves from Joshua was
icing on my cake of HAPPY!!!
We had a low-key day, which was absolutely perfect for us.
I was spoiled by my kids & husband by getting a day off
from doing all that I usually do. Joshua played outside in
the sprinkler with his brothers & eventually commandeered
the hose, using it to soak the boys. Hearing his laughter
mingling with his brothers' was simply beautiful. I am SO
thankful that we have, once again, been fortunate to find
the "sweet spot" with his medication dosages & timing of
administration so that he is able to have these hours of good
times with us all. I thank God for giving Joshua's doctors
and myself wisdom when we need it so that we can enable
Joshua to have the best days possible.
Thank you to everyone who has joined me in praying for
happy times & good days for Joshua. Yesterday was as
perfect a day as I could hope for & is proof, to me, that
Joshua still has lots of living left to do. Once again, I
express gratitude that his decline is slow. I am SO
INCREDIBLY THANKFUL that we get to have hours, and
even entire DAYS, where he's happy & playful, mixed in
with the hard times. I am thankful that I can still answer,
"He's declining, but he's mostly happy as he goes," when
people ask me how Joshua is doing.
Thank you, God, for allowing me to be this precious child's
mother. Thank you for the privilege of being Mom to all 9
of the amazing people you've entrusted to my care. And
thank you for giving me such a lovely day yesterday with
all of them. In light of where we are in this season of life, I
could not have asked for a better day.
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
Written May 12, 2012 6:45pm by Kate Parker
Sometimes I get a comment in the guestbook that leaves me
saying, "Wow, what I wrote didn't translate well, did
it?" As a result of a comment I received (and have since
deleted), I felt it necessary to write again. I don't want
anyone getting the wrong impression of what is happening
with Joshua, so when someone writes out a prayer asking
God to let Joshua go home soon (ie: to die soon), it's
obvious that I'm not explaining very well & need to take
some time to clarify.
I made a photo album to show you the range that we are
experiencing with Joshua. I have been trying to convey
that when his pain is controlled & he isn't hurting, he is
HAPPY & enjoys his life. No, he isn't able to do even 1/4
of the activities that a typical 6 year old can do, but what he
can do, he has a great time doing, & we (his family) love
spending time with him doing those activities. Joshua's
"good times" last, on average, 20-30 minutes, though he
has had spurts of up to an hour before he is utterly worn out
& needs to rest. On a good day, he will have multiple
'good times' & not a lot of breakthrough pain requiring
extra medication. On a bad day, he sleeps for 20+
hours. Most days fall somewhere in the middle, and over
the past week or so, his need for extra pain medication had
increased to the point where he was sleeping excessivelylong amounts of time, so we were forced to add Methadone
back into his medication lineup, which made him even
more sleepy.
Meanwhile, Joshua isn't ready to give up. He doesn't want
to sleep his days away. He wants to LIVE & he wants to
spend time doing fun stuff with his brothers & sisters, not
being zonked out on the couch or in bed. That's what we
want, too. It has NOTHING to do with our refusal to "let
him go". It has everything to do with him not being at all
ready to go. Look at the pictures in the album & realize
they were taken this past month. The ones of Joshua
playing with sidewalk chalk & spraying himself with the
water hose were taken TODAY. He is terminally ill & he
is continuing to decline as time goes on, but he is not
standing at death's door with a family holding him back,
doing all we can to force him to keep going. The time will
come when Joshua is ready to go to heaven, when his spirit
is tired & he no longer wants to fight, but that time is not
now. Right now, though his body is obviously getting
tired, his spirit is still going strong. As long as HE wants to
fight, my family will do everything we can for him.
THAT is why I wrote what I did this morning ~ that I hate
this & it's awful. Watching Joshua struggle to wake up &
stay awake is so hard because it is not what he wants (and,
obviously, it isn't what I want, either). And when he asks
me if I can give him medicine that doesn't make him sleep
so much, I feel helpless because I can't give him what he
wants. Such a simple request, but I can't grant it. It
sucks. I want him to be able to do the things he enjoys
doing. I hate having to increase his medication dosage
amounts & then change his fentanyl patches because I
know it's going to result in him sleeping an entire day
away. I hate signs of decline, loss of skills (his ability to
draw is like that of a 2 year old now ~ I included a picture
in the album), increased pain, increased sleeping... anything
that restricts Joshua & makes things harder for him. I know
it's going to happen, but he has such a strong, fighting
spirit. He wants to stay here with our family. He wants to
be in Adam & Faith's wedding. He knows he is going to
heaven, but he doesn't want to go yet. I don't know if he
will ever get to the point where he's tired of fighting &
wants to give up, but like I've said before, as long as he
wants to fight, we'll stand beside him & fight, too.
Before I end this, I would like to give a tiny etiquette lesson
for people wanting to offer support to parents of kids with
terminal illnesses: DO NOT write that you pray God will
take a child home soon. That is NOT comforting; it is
upsetting! I understand it is said it with the kindest of
intentions, but honestly, praying that a child will die soon is
not something that parents want to know you're doing, so if
that is what you're praying, please keep it to yourself.
Also, a lot of things are written with great emotion in the
heat of the moment by parents of chronically-ill children...
it doesn't mean that things are dire, even if they sound that
way to you. When a child is nearing death, the parents will
generally know it & they will say something to let others
know that they know their time with their child is short.
Until the time comes that a parent says they know their
child is at the end, keep believing that they have good days
ahead of them & write things that support that perspective.
You may think it's time for the parents to let their child go,
but only the parents can know with certainty when that time
is (being that they're the ones living with their child), so
please try to trust that they will continue doing what they
believe is best for their child just as they have done for that
child's entire life.
Thus ends my etiquette lesson. Thank you.

Written May 12, 2012 10:01am by Kate Parker
I hate this ~ I hate this ~ I hate this!!! We've reached the
place where, in order to keep Joshua mostly-pain-free (not
even totally without pain), he is drugged to the gills. He is
fighting to stay awake even while his eyes are droopy & he
keeps nodding off while sitting at the computer. I finally
woke him last night after he'd slept 22 hours because the
big kids & I (selfishly) wanted some "awake time" with
him. After 2.5 hours of eating a bunch of different snacks,
laughing, playing games on the computer & cuddling, he
was back to sleep. He's awake now (8am), but only
because he woke with head pain (what a lousy way for a
little kid to wake up), but his voice is hoarse & sleepyslow.
I HATE that this is where we are at! He wants me to find
different medicines that will make his head not hurt but not
make him sleep all the time. Um... WHAT would those
be? All narcotics make a person sleepy, especially in the
doses Joshua requires for pain control! (That is a rhetorical
question, by the way. I am not actually asking for
suggestions of therapies or herbs or vitamins because what
we're willing to do/give Joshua in the realm of alternative
medicine, we've already done or are already doing. Thank
you, though, to those who would want to suggest
acupressure or acupuncture or the like. I appreciate that
you care).
This is so awful... he has SO MUCH LIVING he still wants
to do! C'mon, God ~ DO SOMETHING to help Joshua
AND give us more time with him!!!!!!!!!! Please!
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
Written May 6, 2012 9:28pm by Kate Parker
I wish I could write an update about Joshua saying he's
doing great. Heck, being able to say he's about the same
would be okay, too. Unfortunately, neither of those things
is true, and as usual, pain is to blame.
His head has been hurting more & more, so he's requesting
(and receiving) more breakthrough doses of
oxycodone. Getting so much medication has made him
increasingly sleepy & in the past 5 days, he's had 2 days
that he slept 21 hours per day & the rest, he's slept 16-18
hours each day. He tries to be happy when he's awake, but
he's been having such bad headaches that the bursts of good
times are short-lived. Yesterday, he started asking for more
pain medication by specifying how many milliliters he
thought he needed ~ saying things like, "My head really
hurts. I need 2mls of medicine." Six year olds should not
have any concept of how medication is dispensed. It makes
me sad that mine does.
Yesterday, we added methadone doses during the day back
into Joshua's routine, hoping it would help reduce the
amount of breakthrough doses of oxycodone he's been
needing. It seemed to help, as Joshua complained of
headache just one time in-between his scheduled doses of
oxy. This afternoon & evening, however, he's been having
a lot of pain. He woke at 2:30pm, had a scheduled dose of
oxy at 4pm, needed breakthrough doses at 4:30pm, 5:30pm
& 7pm, and another scheduled dose at 8pm (plus
methadone). That's a lot of oxycodone in 5.5 hours.
The palliative care doctor's plan is to keep Joshua on the
current dose of methadone for a week, then double the dose
for a week, and then, if necessary, increase again by
50%. My hope is that we'll find that "sweet spot"
combination of methadone & oxycodone that enables us to
keep Joshua's pain under control while maximizing the
number of hours each day that he's awake. Already, we're
seeing the increased "dopeyness" (yes, I know that's not a
real word, but I don't know how else to describe it) from
the small dose of methadone. I wish that were the only
negative symptom we're observing, but it's not.
Joshua doesn't want to relax on my lap anymore ~ he hasn't
been able to curl up in my lap for quite awhile because his
spinal cord is too tethered & trying to bend causes too
much pain, so he's been reclining against me, instead. Now
he is having difficulty doing even that because he needs to
sit up to breathe well. He is having positional apnea ~
when he lays in certain positions, his oxygen level drops
dramatically. While we rarely use his pulse ox anymore,
whenever we increase a medication or if we have to give
him a lot of oxycodone in a short period of time or
sometimes when he's sleeping & his breathing is very slow,
we hook him up to assess how he's doing. What we've
noticed is that certain positions will drop his oxygen level
into the low 70's (percent saturation... normal is above
95%). When his position is okay, his O2 is great, so most
of the time, there's nothing to worry about. What it tells me
is that he's probably got lots of scar tissue built up in his
head again & when his head is in the wrong position,
there's pressure against his brain stem that affects his
breathing.... or maybe the "bad" positions kink his brain
stem more than usual. I can't know for sure, but those are
my hypotheses. It's not something I like knowing is
happening, but it's also not something I can do anything
about outside of keeping his head in "good" positions, so
I'm not worrying about it excessively.
He's got more cognitive impairment. His processing speed
is definitely slowing down, which means when you ask him
a question or tell him something, there's an obvious pause
while he takes time to comprehend what was just
said. Questions are getting more difficult for him to answer
~ tonight, I asked him how old he is. He could not
remember. I told him he is six, then asked him again,
"How old are you?" He still could not remember, even
though I had *just* reminded him.
He is tired. Even when he's awake & happy, he's still
tired. He has little stamina for anything anymore & even
short excursions in the car or his wheelchair completely
wear him out. He is unable to deal with lots of noise
anymore. He seems unable to filter the sensory input very
well & as a result, he tends to just shut down by going to
sleep as his means of escape. Sadly, his best hours of the
day now occur after David, Sarah, Isaac, Bethany &
Hannah go to bed because it is more quiet once they're
sleeping. Joshua still enjoys spending time with his
siblings ~ very much so ~ but if they are all talking or
playing around him, he gets overwhelmed very quickly,
which is hard to see happening because they adore their
baby brother & it hurts their feelings that he can't handle
being around all of them for very long.
As usual, what we're seeing are signs of Joshua's slow,
inexorable slide downhill. At this point, I'm thankful the
decline is slow because he has a decent quality of life when
he's not hurting, & as long as we can keep that under
control, there are good times to still be had.
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
Written May 4, 2012 9:25pm by Kate Parker
I had an interesting conversation with an acquaintance that
brought up a topic I think is worth discussing here. The
question came up of why bother praying when it doesn't
seem to make a difference, anyway, and when God doesn't
answer our prayers?
I completely understand feeling as though prayers don't
matter. I have actually gone circles in my own mind with
that one, but have come to an understanding that makes
sense to me. God is omniscient & omnipresent. He knows
everything. Nothing surprises him because he knows what
we're going to choose to do before we ever do it. So, using
Joshua as an example, before Joshua was even conceived,
God knew he would be born & He knew every single thing
that would happen in Joshua's life. He knew, for example,
that on April 14, 2011, Joshua would experience respiratory
failure. He knew, too, that many, many, MANY people
would stop what they were doing & pray for Joshua's life to
be spared. For all we know, God's original plan had been
for Joshua to die on April 14, 2011, but because of the
prayers of others, He changed His mind, way back before
Joshua had even been conceived, and decided that He
would grant Joshua more days on Earth rather than end his
life on that day. That happened in Biblical times, you
know ~ God had plans to destroy something or someone &
interceding prayer by others altered the outcome (Exodus
32, Jonah 3:1-10, Genesis 18:16-33, Isaiah 38 are some
examples) ~ so why would it not be something that happens
nowadays, as well? I am convinced that prayer CAN and
DOES make a difference in the outcome of things, so it is
worthwhile to pray, especially on behalf of others who are
in need. I know that sometimes, you pray & pray for
someone or something, & the situation does not turn out the
way you were praying for. When that happens, I
understand how it could feel as though your prayers did no
good (I have felt that way when praying for others).
Ultimately, though, we don't know what impact our prayers
have on another person's life, and even if our prayers don't
alter the outcome of a situation, they aren't wasted. The
reason we pray is not to get results, but to further our
relationship with God. He wants us to interact with him, to
know Him, trust Him & remember Him in everything we
do. He wants us to play an active role in His plan for the
universe, but He doesn't promise to be our genie, fulfilling
our every wish.
That leads me to the other part of the question ~ does God
answer prayer? The answer to that is an unequivocal YES.
The caveat, however, is that prayers are not always
answered in the manner we want them to be. When we ask
God for something, or to do something, the answer can be
"yes", "no" or "wait/not yet". We don't like hearing
anything but what we want to hear, so when we ask for
something like our spouse to get that big promotion or for a
child to be healed and it doesn't happen, it would be easy to
throw our hands up in defeat & say, "Prayer doesn't matter;
God never listens to me, anyway!" The truth is, though, that
God DID answer your prayer. He said, "No." As human
beings, we don't like being told no when we really want
something, so we get frustrated & upset at having our
desires thwarted. The thing to remember is that God is
always working things out in our lives for our good. That
does not mean things in our life will always BE good. It
means that God is constantly using circumstances to result
in things that will be good FOR us. To accomplish that, He
sometimes has to refuse us the things we want.
When your small child comes to you & asks if they can
have ice cream 20 minutes before you are going to serve
them dinner, you tell them no ~ they'll have to wait. You
aren't being a jerk by not giving them ice cream (though
they might think differently). You aren't being deliberately
unkind. You just know that dinner is coming & it would
benefit your child (ie: be for his good) to wait. I believe
God works in a similar way when it comes to prayer. God
does answer our prayers and, just like a good father on
Earth does, He knows whether to grant us what we ask for
or to make us wait or to tell us, "No." It's up to us to trust
that when God doesn't give us what we want, it is because
what we were asking for was not in our best interest. It's
up to us to have faith that God has a good plan He is
working out on our behalf & that even if His plan makes
absolutely zero sense to us at the present time, He loves us
more than we could ever imagine & He sees the future
clearly & therefore, what He is doing is what is best for us.
Admittedly, it's difficult to accept that Joshua dying is in
his best interest or for our good. I struggled for a long time
with comprehending how the death of my child could, in
any way, be a good thing for him or the rest of our
family. What I have concluded is that Joshua dying will
NOT be a good thing for us. Losing him will be a terrible
thing for our family ~ the worst thing that has ever
happened to us ~ but Joshua getting to leave his broken
body to live in heaven with Jesus & God is the best thing
that could ever happen to him. We will hurt because we
won't have him in our midst to hug, kiss, tickle & interact
with, but God is going to use Joshua's death, when it
happens, to work out something good for those of us who
must go on living without him. He is already using Joshua's
story to change attitudes, to strengthen faith, to reach others
& to soften hearts. Among the members of my family, we
have so much more compassion toward others who are
hurting because we are experiencing the pain of watching
Joshua decline. God is using this journey to stretch & grow
every single member of my family, myself included, to
teach us things like patience, perseverance, thankfulness &
to increase our faith & trust in Him. We spend more time
with Him because we are forced to lean on Him when we
lack the strength to take one more step on our own, &
because of our circumstances & the challenges we are
going through, He will be able to use us more, as time goes
on, to help others. God doesn't want Joshua to suffer, but
He allows it for a greater purpose, and though this is not
anything I would have ever chosen to endure, nor would I
have ever wanted my child to be forced to walk the path
he's on, I still trust that God has His reasons for allowing it
& I still hold onto the knowledge that God will bring
blessings out of this pain and that one day, I will
understand why.
I want everyone who is praying for Joshua to be healed to
know that their prayers will be answered. God could
choose to make a way for Joshua to live a long life on
Earth, or He may choose to transition Joshua from living
here with my family to living with Him in heaven. Either
way, Joshie will be healed. I want people to recognize that
truth because if Joshua's healing takes place when his
broken body dies & his spirit ascends to heaven, I
desperately do not want the people who have been praying
for him to feel as though their time was wasted because
they didn't get the outcome they were praying for. I want
people to know that their prayers matter... so many times, I
have felt an indescribable peace surrounding me when there
was nothing peaceful going on & I should have been falling
apart. I know that it was because of prayer that I felt that
peace. When a crisis occurs, I post something here & on
Facebook asking for prayer because I KNOW that people
are faithful to respond & I can FEEL the difference in my
own spirit when people are praying. Maybe that sounds
hokey to someone who has not accepted Jesus into their
own life, but it's completely true. I have felt such concern
lately that there might be some who lose faith when Joshua
dies & I don't want that to happen. Every prayer offered on
Joshua's behalf has mattered. It has made a
difference. He's still HERE even though there have been
several times when there were medical professionals telling
me they did not think he would survive "this"
hospitalization. I am convinced that God's original plan
was changed at least twice in Joshua's life (thus far) ~ the
first time being on November 12, 2008, when Joshua had a
tethered cord surgery that we had gone into KNOWING he
would come out of it with a paralyzed right leg. Instead,
his neurosurgeon was given the ability to do things she had
never done before (literally) & Joshua came out of that
surgery not only moving both legs, but fully detethered for
the first time in his life. The second time was when he
went into respiratory failure April 14, 2011. There is no
explanation for why his brain stem suddenly began working
perfectly again, but if it hadn't, he would have died that
day. There really is nothing that will convince me that the
prayers of everyone interceding for my son did not make a
difference. And because of that, it would make me
incredibly sad if anyone became disheartened if God does
not see fit to let Joshua stay here. Please know, no matter
what happens, God is good. He loves us all. He has
marvelous plans for each of us & He'll make beautiful
things come out of even the most ugly, painful, awful
situations if we give Him time to work things out. It
doesn't mean we won't still hurt & be sad when our world
falls apart ~ believe me, the day I have to begin living
without my Joshiebear by my side will be the worst day of
my life ~ but it does mean that we do not have to live
without hope despite the bleak circumstances we're facing,
and that can be what enables us to keep going, and because
we all belong to the family of God & can pray for each
other, we never have to go through the hard stuff alone. I
have said it many times before & I am sure I will say it
many times in the future, but the sentiment remains sincere
~ thank you for praying for my little boy & for my
family. Thank you for caring about us & thank you,
especially, for helping us to bear the load that God has us
carrying. It is a comfort for me to share Joshua's unfolding
story with you.

Written May 4, 2012 2:47am by Kate Parker
Most people know that music is important to me. I have
always found solace in songs whose lyrics speak to my
heart. I believe the reason God “speaks” to me through
music is because He created me to respond to it the way I
do. Through the past few years, through surgeries & crazy
hospitalizations & searching for the reason behind Joshua’s
inability to stay “fixed” & fighting back fears& insecurities
& uncertainties, there have been some songs that were so
perfect for the situation that they will forever be known (by
me) as “Joshua songs”. Some of them include............
“Savior, Please” by Josh Wilson was a song that I listened
to over & over during the past 3 hospitalizations. I would
walk through the hospital listening to this song on my iPod,
the words a plea to God that I would think but couldn’t
speak.
“He’s My Son” by Mark Schultz is a song I’ve played
when I cannot find words to pray. When Joshua has been
hurting in PICU or at home & I feel like begging God to
DO SOMETHING, the words to this song offer up the cry
of my heart.
“Stand In the Rain” by Superchick is a song that I
love. The lyrics resonate for me. It’s like they wrote this
song with me in mind & because of that, it’s my go-to song
when I am feeling overwhelmed& need to go out for a run
to release my pent-up feelings.
When I am exhausted & feeling alone, I listen to Mark
Schultz’s song, “He Is”. It is a song of worship for me… a
reminder that even in the valley, I’m not walking by
myself.
Kerrie Robert’s song “No Matter What” is a song that I
heard for the first time on April 13, 2011, which was the
day before Joshua went into respiratory failure & was Life
Flighted to Portland. That night (April 14th), Megan
posted the song on my wall on Facebook & the lyrics really
hit my heart& have become somewhat of a mantra for me
this past year.
“I’m running back to Your promises one more time
Lord that’s all I can hold on to
I’ve got to say this has taken me by surprise
But nothing surprises You
Before a heartache can ever touch my life
It has to go through Your hands
And even though I, I keep asking why
I keep asking why
No matter what, I’m gonna love You
No matter what, I’m gonna need You
I know that You can find a way to keep me from the pain
But if not, if not - I’ll trust You
No matter what.
That song is one I listen to as a silent promise from me to
God. It speaks my heart… even when I am hurting so
badly I can’t form the words with my mouth.
“What Faith Can Do” by Kutless.... oh my… how do I
explain what this song means to me? When Joshua was
facing yet another surgery in November, 2009 (another
spinal cord detethering & placement of his LP shunt), God
gave me this song. Every single time I heard it, I cried. It
didn’t matter where I was or what I was doing. I could not
hear it without tearing up. It spoke to me on multiple levels
~ Joshua’s courage, his strength, the encouragement that
faith can make a difference & change the outcome that
seems unavoidable, and honestly, it was almost like a
personal message to me from the Lord, telling me to not
give up & to keep facing the hard stuff that was coming my
way because I really would get through it. I imagine that
sounds pretty crazy to some people, but that’s how I feel
about this song. I love it. Further cementing it as a "Joshua
song" is the video that Adam made for me.
Scott Krippayne’s “Sometimes He Calms the Storm” is a
reassurance & a reminder that yes, hard times will come,
but God is present in all circumstances. Either he calms the
storm or He calms me. When things are hard with Joshua,
this song is one I listen to.
When Joshua began really declining, Adam made this
video & shared it with me, which introduced me to the song
“You Give Me Hope”. Honestly, I don’t even know who
sings it, though I do know it is from the movie "Letters To
God". It was one of the first songs God gave me that
addressed Joshua’s current situation (terminal illness). It
spoke Adam’s heart to his brother & will forever be a
"Joshua song" because of that.
I don’t remember when I first heard Casting Crown’s song
“Praise You In This Storm”, but I remember being unable
to see through my tears the first time I tried to sing along
with the song as it played on the radio while I was driving
to Portland with Joshua for surgery. I remember telling
God, “This song… I’m just singing it to You because it
speaks better than I can.”
Matthew West’s song “Strong Enough” is another song
whose lyrics I can sing as I drive down the road or whisper
quietly when I am sitting in a room waiting for Joshua to
get out of surgery and offer up as a prayer to the Lord. I so
need Him to be strong enough for both of us because I am
so weak. Without Him, I would not still be standing.
When Joshua went into respiratory failure last year, God
surprised me with the song that He introduced me to. I
would leave the hospital to take a shower at the Ronald
McDonald House (Adam would stay with Joshua) & while
there, I would listen to the radio. A few times, I drove to
the grocery store to replenish our supplies. Every time I
turned on the radio or got into my car, the song “Blessings”
by Laura Story played. And every time I heard it, I turned
the radio off & told God aloud that I did NOT want to hear
that song! The message of the song is that blessings can
come through lousy circumstances. In light of my
circumstances at that time, with my 5 year old son lying in
a hospital bed & no one thinking he was going to live much
longer, the last thing I wanted to hear from God was that
He could bring blessings from everything that was
shredding my heart. Finally, though, I gave in & listened to
the song, really listening to the words, and I
understood. The lousy stuff that happens isn’t what God
wants for us, but there can be good that comes out of it…
the blessings in disguise. Once I softened my heart to what
God wanted me to hear in that song, I went from despising
it to thinking it was absolutely beautiful. Amazing what a
shift in perspective can do for a person, huh?
My future daughter-in-love, Faith, gave me a song right
before Joshua’s brain surgery last November. She said she
was nervous about telling me about this song because she
didn’t know how I would react to a song basically saying,
“Hey God, I’ll walk wherever you want me to even if
where You want me to go totally sucks”, but she felt like
she was supposed to point me to it. I listened & was glad
she had obeyed the prompting of the Holy Spirit because
the song, “Let the Waters Rise” by Mikeschair, was perfect
for expressing my feelings. With lyrics like this, how could
I not love this song & the timing of being introduced to it?
“Don't know where to begin,
It’s like my world's caving in
And I try but I can't control my fear
Where do I go from here?
Sometimes it’s so hard to pray
When You feel so far away
But I am willing to go
Where you want me to
God, I trust You
There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to,
I will follow You.
I will follow You.”
No, following God isn’t always easy or fun, but that
doesn’t mean we shouldn’t do it. I'm thankful for songs
that remind me of that truth, which is a good thing when
the going gets tough.
When I was getting things organized for Joshua’s memorial
service, thinking it would be helpful to get as much ‘out of
the way’ now so that when the time comes, I don’t have to
deal with it, I asked God to give me songs for the
service. He did, and those songs are now part of my Joshua
collection of music. Adam is making videos to accompany
a few of the songs and two staff members at Legacy
Emanuel will come to the service so they can play music &
sing another song. When the time comes, I’ll share these
special songs. I mention them not to be coy, but just to
emphasize how kind the Lord is to me. He cares about what
is important to my heart, even if no one else understands it,
and long after Joshua has gone to heaven, I will have
dozens of songs to listen to & be comforted by. That, to
me, is a significant gift from God, and one I thank Him for.
Edited to add: I cannot figure out why some of my text is
huge & some is small, nor why the font is not the same
throughout this post. Not a clue. I've tried to fix it for the
past 10 minutes & it's not working, so I'm giving up &
going to bed, instead. :)
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
Written May 2, 2012 2:04am by Kate Parker
About a month ago, Joshua asked me if I would buy a book
to read to just him. I asked him if he meant a special story
like the book I used to read to Adam when he was a little
boy (Love You Forever) & he said, "Yes!" I told him I
would & very shortly thereafter, I found myself at Barnes
& Noble with Emily and Bethany before Bethany's ENT
appointment. The first book I picked up & thumbed
through made me teary, so of course that's the one I ended
up purchasing. :) The book title is "Wherever You Are My
Love Will Find
You". (http://www.nancytillman.com/books/wherever/) E
ach page (or 2-page spread) has a picture of a child
surrounded by sparkles which represent his mother's
love. When I took it home & read it to Joshua for the first
time, he LOVED the sparkles & what they
represented. With each page turned, he would touch the
sparkles & tell me, "There's the love!" So far, I have
managed to get through the book without getting choked up
exactly zero times. It's just too perfect for Joshua... too
meaningful to me... and the memories we are making as we
snuggle together each night & read this book together, just
the two of us, are so tender& special. I can honestly say
that I am never going to read this book to another child. It
is Joshua's book. His special story. Something we don't
share with anyone else, and that makes it incredibly
precious to me.
A few nights ago, after reading the story to Joshie, he asked
me if it was true that my love could find him anywhere. I
assured him that yes, it was absolutely true... no matter
where he goes, my love is always going to be with him..
even in heaven. "Can your love fly?" I promised him that it
could. Then, cuddling closer as I hugged him, Joshua
sighed, "That would be so cool." I asked, "What? To have
my love go with you to heaven?" "Yes," he replied. Then,
just before closing his eyes, he softly promised, "And my
love will find you, too." I gently kissed his forehead, and
since he'd drifted off to sleep, he didn't mind my tears
falling against his cheek.
These conversations we have are a form of sweet agony for
me. I LOVE when Joshua gets philosophical & wants to
talk about things like sending butterflies from heaven or
how my love will find him even when he's not here
anymore because I am happy to have the opportunity to
know what is going on inside his mind & how he is
processing everything that is happening in his life, but at
the same time, it's a sharp pain like pouring rubbing alcohol
on an open cut. Joy & heartache mingle every day,
performing an intricate dance, & I never know which is
going to lead... which emotion will predominate. I can try
to not get mired down in sadness (and I do try to stay
focused on the positive rather than the negative), but I have
absolutely zero control over the emotion suddenly showing
up & surprising me with the forcefulness with which it
hits. It just happens & I often have no warning that it's
coming, which is why I get choked up on a regular basis.
Another conversation that Joshua had recently involved
Adam & me and occurred as we stood in an aisle at
Wal*Mart. Joshua rarely wants to leave the house, but
when he does want to go someplace, we indulge his
whim. Last week, after the little kids had gone to bed, he
announced that he needed a toy. I asked what toy, thinking
he wanted something from upstairs. He answered, "I don't
know yet. I'll know it when I see it at the
store." Ohhhhhh.... comprehension dawned...."You want
me to take you to Wal*Mart to get a toy?" "Yes,
please." All righty, then! Adam & I got Joshua dressed,
loaded him & his birthday gift card into the van and headed
out to the store. When we arrived, I pushed Joshie in his
wheelchair to the toy section. We slowly meandered
through every aisle of boy toys until he found what he
wanted ~ a Yoshie remote-controlled car. He held his new
toy in his lap and was happy, chatty & smiling
widely. Then we walked past a bunch of teenagers who
were openly staring at him & suddenly, my sweet little boy
was hanging his head, silent, the smile completely gone
from both his eyes & his lips. Concerned, I asked Joshua
what was wrong. "Did those kids staring at you upset
you?" He slowly nodded, then quietly asked, "Can we go
home now?"
I don't know about Adam, but I was simultaneously sad &
angry. No wonder Joshua rarely wants to go out! He gets
stared at every single place we go. When it's little kids, I
don't care (and neither does he), but when it's school-age
children or, worse, teenagers or adults, it REALLY
distresses him to be stared at. People will ask, right in front
of him, "What is wrong with him?" Um.... hello, he can
HEAR!!! And how rude can you be, anyway? I
understand that what you want to know is why my son is in
a wheelchair, so why don't you just use those words? Or,
better yet, why don't you acknowledge his existence by
saying hello to him before you ask his mother anything
about him? He's a child, a little boy, not just a diagnosis or
a kid who has "something wrong with him". And while I
don't mind educating people about spina bifida (I don't get
into the whole brain stem dysfunction/terminally ill status
with strangers while standing next to Joshua), I don't think I
am obligated to satisfy everyone's idle curiosity. So.... on
that night, after watching my sweet little boy's happiness
fade away on account of some teenagers who hadn't been
taught that it's not polite to stare, point or openly gawk at
another person, I was done, and I decided enough was
enough.
I knelt down beside Joshua & told him, "You know
what? If someone is staring at you & you don't like it, you
can tell them, 'Quit staring at me!' Or you can tell Adam or
me that someone is staring and WE'LL tell them to quit
staring at you." Joshua opened his eyes& looked at me,
surprised. "Really?" That was all he said. "Oh yeah,
buddy. You can tell anyone who is staring to knock it off
and I will back you up. I promise." Adam chimed in, "If
anyone is staring at you and you don't like it, I'll tell them,
"Stop staring at my brother! It's called a wheelchair. Keep
moving!" Upon hearing that proclamation, a slow smile
spread across Joshua's face & his eyes lit up again. "I can
tell people to not stare at me?" he asked. Adam & I
answered in unison, "Yes!" Adam elaborated, telling his
little brother, "People don't need to be staring at you. There
is nothing wrong with you! Just because they're jealous
that they don't have a cool green wheelchair like you do
does not give them the right to stare as you go by." Joshua
smiled at that, clearly feeling better about the situation. He
told us that, "If someone stares and I don't like it, I'll tell
them, "Quit staring!" I assured him that that would be
perfect and that yes, Adam & I would definitely tell people
to stop staring at him, too. That satisfied Joshua, gave him
a feeling of empowerment, and brought the smile that I
love so much back to his face as we finished our shopping.
We will be heading to Portland tomorrow (Wednesday)
morning since Bethany needs to see her specialists. Our
pediatrician wanted to do a direct admit to the hospital (for
Bethany), but her rheumatologist wanted to see her first, so
I'm unsure whether or not she will be admitted to Emanuel
tomorrow. It will depend on what the rheumatologist wants
to do. I am hoping Joshua will stay chilled-out & stable
while we're up there. I have no reason to think he'll
suddenly have a problem since he's staying relatively stable
& doing all right, but he's been known to quickly "tank" &
now really would not be a good time. Not that ANY time
would be good, but if possible, I would prefer to not have a
repeat of January, 2011, with both Bethany & Joshua
admitted to the hospital in Portland at the same time. For
those interested, I'll be updating Bethany's page at
http://www.caringbridge.org/visit/bethanyparker
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
Written April 26, 2012 10:51pm by Kate Parker
I apologize for the lack of updates. I did write an update a
few days ago, but when I clicked "post", my internet took a
hiatus or something & I got a "page timed out"
message. Repeatedly. When my internet finally decided to
behave again, I'd lost the update I'd written. I was so
frustrated & tired that I didn't try again, thinking I'd come
back the next day & post an entry. Then life got in the way
& it didn't happen. A couple people emailed today to ask if
everything was okay, which reminded me that I needed to
get over here. I will reiterate, though, that if anything
significant happens with Joshua, I will update
here. Always.
He is as good as he can be right now. Our palliative care
doctor tweaked medication dosages once more & since
then, we are finding it easier to keep Joshua
comfortable. The drawback is that Joshua sleeps more, but
it's not upsetting him the way it did a month ago, so... I
don't know... I guess I should be thankful for that, and I
*am* relieved that he's not bothered by it, but it still
bothers *me*. I don't like having Joshie asleep for the
majority of the day. He slept for 21 hours on Tuesday. 18
hours yesterday. On average, he's sleeping about 16
hours. Some days more, some days less. The hours he is
awake, he is much less active than he used to be, but he is
generally happy. On bad days, he has a lot more pain & we
have to give more medication, which pretty much knocks
him out, but thankfully, bad days aren't happening too
often.
I think the best way to explain what we see happening with
Joshua is to say he's wearing out. He just seems tired. Even
when he's happy. It's not one big thing... it's all the little
things... the way he has to sit up to do his approximation of
a yawn, the way he gasps for breath at regular intervals
throughout the day (especially when talking), his worsening
balance, his decreasing stamina, the increasing difficulty
understanding his speech. At the beginning of the week, he
started having pain at the back of his neck when he tips his
head forward. It could be chiari-related, but I suspect his
tethered cord is more to blame & the action of dropping his
head forward pulls his spinal cord, causing pain. Big sigh.
Joshua is so infinitely precious... so sweet & full of funny
sayings... watching as he slows down heightens everything,
and knowing that he won't be able to stay with us is so dang
heartbreaking. I wish I could come up with words to
express what my heart feels, but I think maybe this is an
experience that defies words.
Today, I had two conversations with a coordinator from the
Pacific Northwest Transplant Bank regarding the
possibility that Joshua could be a candidate for organ
donation. She accessed his medical records from Legacy
Emanuel, then called me back to talk more. Bottom line is
that Joshua is NOT ruled out as being an internal organ
donor at this time. That was encouraging to hear since I
would really like to be able to donate Joshua's
organs/tissues after his death so that other children might
have the opportunity to live. I want something good ~
tangibly good ~ to come out of his death, so my prayer
since March 25, 2011 (the day we found out his condition
was terminal) has been that he would be a candidate for
organ donation. I had thought/been told he wouldn't
qualify, but I felt prompted to call PNTB & the people I
spoke with today ~ the ones who actually are in charge of
evaluating a potential donor ~ told me differently, and that
was after they'd looked up his medical history.
While it's true that a person has to be brain-dead while their
heart is still beating (which is why so many people who
would like to donate their organs aren't able to BE organ
donors ~ the circumstances of death have to fall within a
specific criteria), I was told there ARE circumstances
where a person isn't technically brain-dead but can still
donate, and the anticipated manner in which Joshua will
transition to heaven is such that he might be able to qualify
for internal organ donation. If not, he could still qualify for
eye & tissue donation.
It's a lousy topic of conversation to have with a person, but
I'm glad I had the talk today. It gives me hope that parts of
Joshua could go on even after he dies, which is something
that would mean a lot to my family & me.

Written April 19, 2012 1:49am by Kate Parker
We've had a few craptastic days.
Joshua's oxycodone was increased by 50%. Despite the
increase, he's continued to need extra pain medication inbetween scheduled doses. Dr. T called tonight & outlined
the next steps we'll take for pain management. I'm
seriously disappointed that jumping his oxy up by 50%
hasn't been enough to completely stop his hurting. One
thing that has become crystal clear to me is that, as
brokenhearted as I will be when he dies, heaven will be a
great place for Joshua if for no other reason than he will not
hurt anymore. How I wish I could give him a pain-free life
here on this earth!
He is now experiencing pain at the back of his head (where
his chiari scar is located) every time he tips his head
forward/down. That motion pulls on his tethered spinal
cord, so it's not really a surprise to hear that it hurts. But
honestly, hearing him complain of new pain despite the
amount of medication he is getting is almost scary. It
makes me wonder just HOW BAD must this pain be to be
registering through all of oxycodone, fentanyl, methadone
& gabapentin he's on. Really, it boggles my mind.
Much is happening with Joshua's little sister, Bethany, too,
which further complicates my emotions & makes it more
difficult to "deal" with each new thing that crops up with
either child. People say God doesn't give you more than
you can handle & I would really like someone to give me
the chapter & verse from the Bible where He says that. I
can't find it. I've always believed God gives a person
MUCH more than they can manage on their own so that
they are forced to lean on Him in order to get through it,
and I can find the verse, "I can do all things through Christ
Jesus who strengthens me," in my Bible (Philippians 4:13),
so I understand that yes, things are going to happen that I
don't feel I can deal with, but with God's help, I *will*
make it through the tough times. Despite that promise,
however, I feel stretched to the point of breaking. I read a
friend's blog tonight & she described herself as feeling as
though she could shatter into a million pieces with very
little provocation. THAT is exactly how I feel right now,
as well.
I need a day or two of things going "right". Of medical
personnel doing their jobs without requiring a parent
"babysitting" them to ensure it gets done. Of Joshua not
hurting (and his sister's situation improving). I need a
break. Not from my children, but from the pain & other
problems that plague them & are tearing my heart to pieces
because I can't make it better.
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Written April 15, 2012 1:05am by Kate Parker
On Tuesday, I met with Dr. T, Joshua's palliative care
physician, to discuss medications & my concern that
methadone was causing Joshua to sleep excessively & was
also keeping him very dopey when awake. Dr. T saw what
I was talking about just by observing Joshua & he agreed
with me that the side effects of methadone weren't worth
the benefit of using it during the day. He told me to drop
the two daily doses of methadone (we are keeping the
midnight dose), then wait a few days to let Joshua's body
clear out the residual medication, and then we would
increase his base dose of oxycodone by 50% since Joshua
seems to do pretty well with oxy & it doesn't completely
knock him out. I was thrilled to get permission to stop
using extra methadone. I know increasing opioids will
eventually cause drowsiness regardless of which
medication is used, but cutting out the daily doses of
methadone will stave off the excess sedation for awhile
longer & for that, I'm grateful.
After the meeting with Dr. T, Adam, Joshua & I headed to
the diagnostic center in the hospital to get Joshie's head CT
done. That turned out to be a 2-hour process because we
had to wait... and wait.... and wait....and wait.... once we
finally got in, the scan itself went smoothly, took just a few
minutes, & Joshua did great at laying still. Afterward, we
headed upstairs to meet with Dr. W, our neurosurgeon.
When Dr. W walked in, she asked, conversationally, "So
what brings you back here?" Joshua answered, "I want you
to fix my back, please." That sobered her up immediately
& she sat down to begin what wound up being a very
serious discussion. Dr. W told me repeatedly that she
doesn't know what to do. There isn't a huge benefit to be
gained from doing surgery like there used to be ~ I mean, 2
years ago, when she did a surgery, it helped in a big way &
everyone knew it was totally the right thing to have
done. Now, though, there isn't going to be that huge
benefit. She isn't even sure if anything she does will make
a difference for Joshua anymore. That said, she doesn't
want to do nothing. She wants to help him live as long as
possible ~ and as happily as possible, too! In-depth
evaluation of his functioning showed more deterioration of
his brain stem functioning than I was aware of. He has
right-sided weakness of his body, left-sided loss in his
facial muscles (which answers why he can't yawn anymore
& why his smile is lopsided now), & an abnormal Babinski
reflex in one foot, which is indicative of corticospinal tract
damage. His back is extremely tense/stiff, which Dr. W
believes is the result of muscle spasms due to tethering. She
& the geneticist believe Joshua is the only child in the
world who has his combination of conditions; as such, there
is no protocol to follow, which means Dr. W is guessing
about what could happen if we do surgery just as much as I
am. The meeting on Tuesday was more her & I bouncing
ideas off each other than her speaking as "The Doctor" &
me listening as "The Parent". It was a different dynamic
than usual & while I was comfortable interacting with her
in that manner, the significance was not lost on me.
Toward the end of our meeting, Dr. W abruptly stood up &
told me to come look at Joshua's scans with her. It was a
way to allow us to talk bluntly without Joshua hearing
anything we said. At the end of our private discussion, Dr.
W said, " Well, back in November we were trying to keep
him alive, right? So... let's see if we can keep him alive for
a little while longer."
I left the appointment with instructions to get an MRI of
Joshua's back to determine how tethered he is & a promise
that she would decide afterward what she thought she could
do.
I called central scheduling to ask if there was any way they
could fit Joshua in for his MRI the next day so that we
could get it done without having to go home & then drive
back up. After the guy listened to me explain the situation
~ our living 250 miles away & Joshua being terminally ill,
so us needing to get the scan as soon as possible ~ he told
me he'd figure something out. As it turned out, they had a
cancellation for 7am the following morning. He asked me
if I could have Joshua at the hospital at 6:15am & I told
him, "Absolutely," while inwardly, I cringed at the thought
of having to get up so early (I am NOT a morning
person). I thanked God for providing the appointment as I
pushed Joshua's wheelchair to the van, though, because I
truly was grateful that we could get the MRI while we were
already in town.
During the 45 minutes that Joshua was sedated for the scan,
his respiration rate dropped to 6 breaths per minute (20 is
normal for a child his age & 12-14 is Joshua's norm) & his
heart rate dropped to 40 (his norm is 60-80). I did not think
to ask if his oxygen saturation dropped, as well, and the
anesthesiologist only mentioned the respiration & heart rate
when he came to get me after Joshua was in recovery. By
the time I got in to him, he was satting at 94% & his heart
rate & respiration rate were back to his normal. Jenny
came in to re-program Joshua's LP shunt (the one in his
back, not the one in his head), then told me she or Dr. W
would call me the following day after they'd reviewed the
scan & discussed things. After she left, the nurses told me
that even though Joshua was still half-asleep, I could take
him if I wanted to since I had an oximeter & oxygen in the
event he needed some assistance. I immediately lifted
Joshua into his wheelchair & headed out because I needed
to get home as soon as possible to drop Joshua off & pick
up Bethany so that I could get her to the hospital 40 miles
from our home for her Actemra infusion. Thankfully,
Joshie slept the entire drive home, so we made really good
time.
I didn't hear from our Dynamic Duo on Thursday as
anticipated, which was frustrating. When so much is riding
on one decision, every extra hour of waiting to hear the
answer is difficult. Finally, I told God, "Okay okay, I get
it. In Your time, not mine." I wish I could say I graciously
let it go, but I didn't. I just gave up & told myself,
"Whatever. You'll hear from them eventually. Go about
your life & stop fretting."
I heard from Jenny yesterday afternoon. She told me that
Dr. W is willing to attempt surgery, but they want to wait
until things are worse before doing so. I know that sounds
crazy on the surface, but it makes perfect sense to me & I
told Jenny I completely understood their reasoning. The
risks are substantial enough that before they attempt a
surgery, they want to know Joshua is at the point that if
they DON'T do something, he will probably not live more
than a few more weeks. Charley & I are in agreement with
that decision. The way my husband & I see it is this: if we
were to do surgery next week & Joshua did not survive, we
would feel horribly guilty because we are fairly confident
that if we don't do surgery next week, he isn't going to die
just yet. He is still playful and happy for the majority of his
awake hours & we do not want to take that from him or
deprive ourselves and our other kids the time with
Joshua. If we wait until Joshua is at the point where all he's
really doing is sleeping & then waking up needing
medication &/or is completely miserable like he was at the
end of October (when we knew we didn't have much time
left with him if we didn't do something surgically), then it
will make sense to try something once more. If it works,
fantastic ~ we could have more happy, quality time with
our little boy. If it ends his life, that would be
heartbreaking, of course, but we could find some solace in
knowing he didn't suffer. For him to go to sleep after being
hugged, kissed, prayed for & assured of our love and then
to wake up in heaven really would be lovely for Joshua. If
he did not survive surgery, Charley, myself & our other
children would be spared from watching him get to the
point where all he does is sleep & we wait for him to die
but he has no quality of life while we wait. That would be
incredibly difficult to endure, too. Really, though, when
you get right down to the bottom line, ANY way Joshua
dies will be horrible for us, so what we pray is that however
he dies, it will be peaceful for him because nothing else
really matters in that situation. I am not saying at all that I
want him to die during surgery. I absolutely, certainly do
NOT! If surgery takes place, I want it to be successful & to
improve Joshua's quality of life so that we can spend more
time with him. BUT... if he did die during surgery, I would
know it was a peaceful way for him to go & that would
eventually bring some comfort. If we do surgery & Joshua
survives, but the procedure doesn't really help at all, we
will know that we listened to his wishes & we tried. That
would help prevent any feelings of regret after he dies
because we would know we did all we could for him.
So... when Joshua gets to the point where he is sleeping the
greater part of each day & he's pretty miserable when he's
awake, I'm supposed to call Dr. W & Jenny and let them
know. They can do surgery & it will hopefully be
successful at buying us more time with Joshua, but if the
worst occurs & he dies, no one will be left feeling as
though we hastened his death by attempting a last
operation. It's the best our Dynamic Duo can offer at this
stage of Joshua's life & it's a decision that I both respect &
accept. I also believe it's the best decision they could have
come up with. I'm relieved that they don't want to do
surgery right away & I'm thankful that they are willing to
try again to buy us more time with Joshua. They were
successful in November & it's my prayer that they will
again be successful when the time comes that we need to
consider taking that step. Above all, I am thanking God
that we have the option of trying surgery again because as
long as Joshua keeps saying he doesn't want to go to
heaven yet, I want to do everything I can to keep him
here. If the day comes when he wants to stop fighting, I
won't push him to keep going. If he gets tired & says he is
ready to go to heaven or that he doesn't want surgery, I
won't force him to endure it. While my family is happy to
have the option of pursuing surgery as a way to potentially
give us more quality time with Joshua, none of us wants to
do it at the expense of honoring his wishes. That, above
ALL else, is a goal we never lose sight of.
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
Written April 13, 2012 12:00am by Kate Parker
I didn't hear from Dr. W or her P.A. today, so I will update
again after I do.
Sigh.
Why do doctors tell a parent, "We'll call you tomorrow,"
and then NOT call the parent? Especially when it's about a
serious subject... I wish they wouldn't assure me they'll call
if they aren't going to. Leaving parents hanging to twist in
the wind as they await news is cruel.
Yes, I know something could have come up that prevented
them from calling. I know they may not be ready to
discuss things with me just yet, especially after reviewing
Joshua's MRI (I have a copy of it & it's not good), but ya
know, I don't really care. They said they'd call, which
made me then expect they'd call, and I stayed home all day
so I wouldn't miss their call, but then it never came. They
could have had their nurse call me to say, "Hey, they're still
reviewing things but will get in touch soon."
Ugh. This is so difficult. Charley & I are waiting to
discuss our options until we know which ones remain & we
can't know that until we hear from Dr. W. She won't be in
the office tomorrow, but I am holding out a tiny grain of
hope that her P.A. will call me & not force me to wait over
the weekend.

Written April 12, 2012 12:19am by Kate Parker
I know I should write an update about how our trip to
Portland went, but I don't have the words yet to give more
than a synopsis.
The head CT went smoothly. The meeting with Dr. W was
hard. She wanted Joshua to have his spine scanned again,
so I called central scheduling & after explaining the
situation, they got him in for the MRI first thing this
morning (we checked-in at 6:15am). I also met with Dr. T,
Joshua's palliative care doctor, & he tweaked Joshua's pain
meds again in what we hope will be an improvement with
regards to Joshua's sedation (ie: not make him so spacey &
sleepy).
During the 45 minutes of sedation for the MRI today, his
respiration rate dropped to 6 (breaths per minute) & his
heart rate to 40. He hadn't received his 4am medications &
the anesthesiologist hadn't given any medication that would
depress his central nervous system, so having that happen
was a bit unnerving, but he bounced back & was satting at
94% with a heart rate in the 70's & respiration rate of 12 by
the time they brought me back to recovery to see him.
I am supposed to hear from Dr. W tomorrow. At this point,
it's my intention to write a full update after she & I talk. If
I don't write it tomorrow, it will be soon thereafter, once
I'm not feeling quite so raw.
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
Written April 8, 2012 5:02pm by Kate Parker
Once again, we are standing at a fork in the road of our
journey with Joshua, needing to decide which path we'll
take before we can continue onward.
Joshua does not want to sleep excessively or feel groggy
when he's awake, but with increasing pain requiring
increasing medication, increased sedation is the major side
effect. So what is causing his increased pain? Right now, I
believe it is his tethered cord putting downward traction on
his brain stem. He could also have scar tissue built up
inside his head since it's been 5 months since his last chiari
surgery & that could be contributing to his head
hurting. So what do we do about it? That is where we
encounter the choice of which path we wish to take.
When we had to increase Joshua's meds & he started
sleeping a lot more, he expressed clearly that he did not like
it. He asked me why he was sleeping so much. I told him
it was because I had to give him more medicine to help his
head not hurt. He asked why his head was hurting more &
I explained how his spinal cord is stuck with scar tissue &
that causes it to tug his brain downward, which hurts. He
asked if Dr. W could fix his back. I admit, that question
shocked me. After months of hearing Joshua say he is
never having surgery again, the last thing I expected was to
hear him ask for his neurosurgeon's help. To answer his
question, I told him the truth ~ "I don't know."
Interestingly (coincidentally?), our pediatrician had called
me the day before Joshua & my conversation to discuss the
conversation she had had with Joshua's palliative care
doctor & where we were going from here with regards to
his pain meds, & a portion of the conversation had involved
the topic of another surgery & whether it was something
that should be pursued as a treatment option. I was urged to
call Dr. W to inquire what her opinion was regarding
attempting another surgery. I did not think I was going to
do it, but after Joshua asked me if Dr. W could fix his back,
I decided to make the call.
As a result of that call, I am heading to Portland
tomorrow. Joshua will have a head CT to evaluate how his
VP shunt is working and then he will see Dr. W. She & I
will discuss what surgical options she feels are possible, if
any, & we'll make a decision about which path we're going
to choose based on the results of that meeting.
Historically, Charley has let me make the medical decisions
for the kids ~ I was pre-med in college & love medicine, so
my knowledge base for our kids' medical conditions is
broader & deeper than his ~ but with these life-impacting
decisions to be made, he has joined in the conversations &
shared his opinion.
If we do nothing, Joshua will continue along the path he's
currently on. He will continue to need increased doses of
pain medication & it seems that he could get to the point
where he sleeps the majority (and, eventually, all) of each
day. This isn't what he wants. What he does want is for us
to figure out a different way to help him, and the only
option that might be available is surgical in nature. If
Joshua still did not want surgery, we would not be
considering it. But he does. He has asked multiple times
this past week if Dr. W is going to fix his back & has told
us that he hopes she will. As such, I will pursue
investigating this potential pathway.
If Dr. W believes there is a surgery she could do that has
the potential to help Joshua in the same way the surgeries
he had last November did, then we will have her do it. We
realize that a surgery has the possible outcomes of success,
failure or no change at all. Success would be seen as
Joshua's requirement for increased pain medication being
slowed so that he does not need to be overly sedated any
time soon. A successful surgery would allow Joshua more
time to enjoy the activities he wants to participate in. Since
he is happy when he's not hurting, his quality of life is still
worth trying to maintain. Failure would be any bad
outcome, & yes, we are aware that there are some very real
risks to be considered. Ultimately, though, the way we see
it is that if Joshua were to die during surgery, it would be
painless & peaceful for him ~ he'd be hugged, kissed, told
he was loved & then he'd go to sleep in the hospital & wake
up in heaven. That really would not be a bad thing for him,
though it would be awful for the rest of our family. I told
Charley that if we attempted a surgery & Joshua died, I
think I would struggle with feeling like we shortened his
life. He asked me, "Okay, what will happen if we don't do
surgery or anything else?" I answered, "He'll most-likely
continue needing more medication as things got worse with
his tethering & brain stem dysfunction &
compression." Charley's response to that was, "Well then,
what do we have to lose?" When I thought about it, I
realized what he was saying. Yes, it would be horrible to
attempt a surgery & lose Joshua because of it, but we're
going to lose him, anyway. If nothing changes, Joshua is on
the road to where he will eventually sleep around the clock
before he dies. If Dr. W offers to do surgery, the
opportunity to "reset the clock" (ie: buy him more time)
exists. And though some people will not understand why
we would want to do that & some will see it as us
committing Joshua to more months of pain as we refuse to
accept his inevitable death, I know Joshua better than
anyone else on this earth & I have to live with myself (and
Charley with himself) & the decisions I make for him, so I
am going to do everything I can to make ones that won't
torment me for the rest of my life. While I don't want to be
a parent who refuses to let their child go peacefully when it
is obvious to everyone around them that the fight should be
over, I know we are not at that point yet. I have a little boy
who laughs & plays with his siblings & enjoys his life,
restricted as it may be. Yes, he needs copious amounts of
medication to maintain him at a "good" place, but we can
still do it the majority of the time. I have a little boy who is
asking if his neurosurgeon can fix his back so that he won't
sleep all the time from needing increasing amounts of
medicine to make his head not hurt. I have a little boy who
has flat-out said he does not want to go to heaven yet. As
his parents, how can Charley & I NOT try to honor his
requests?
I don't know if Dr. W is going to have any surgical option
that she feels is worth attempting. I could go into her office
on Tuesday only to hear her say that surgery is too risky &
she doesn't believe Joshua would potentially benefit enough
to make it worth trying. If that happens, then there's no
decision to be made, obviously, and the benefit of having
had the appointment would be that Dr. W could explain to
Joshua why she can't fix his back. He would know that the
decision to not do surgery was not mine or his
father's. Maybe that would help him to accept medication
~ and the resulting sedation effect ~ as the only available
treatment option. On the flip side, I could just as easily
hear Dr. W say that she could try one, two or three different
things & what would I like to do? This whole situation
carries some potentially-huge consequences & I can see
pros & cons to every option available, which makes
choosing the right thing to do agonizingly difficult. When
there are no easy decisions, no "good" options, how does a
parent know which is the best of the bad choices to
pick? It's what I have been wrestling with. Instead of
seeking out the opinion of others, I have been spending
quiet time praying that God will use His Holy Spirit to give
Charley & me wisdom & a knowledge of what He wants us
to do. I want peace, not a spirit in turmoil, as I face this
upcoming appointment & the decisions that will result from
it.
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
Written April 5, 2012 9:11pm by Kate Parker
We've spent the past week tweaking Joshua's pain meds
after he spent a couple of days being extremely distraught
over sleeping for the majority of each day ("each day"
meaning 24 hours, not daylight hours). He made it very
clear that he does not want to sleep all day long, even going
so far as to ask me to wake him if he didn't wake up by
himself and thanking me after I woke him one night at
9:30pm (he'd slept from midnight to 3:30pm, then had
fallen back to sleep at 4:30pm until I woke him). Dr. S,
Joshua's pediatrician, saw him in her office & agreed with
my request to lower the dosage on one of his meds
(methadone). By the next afternoon, I knew we'd lowered
it too much because while Joshua was awake, he was
needing a lot of extra doses of oxycodone to keep him
comfortable. I informed Dr. S & asked if we could go back
up on the dose by 25%. She agreed & that's where we've
been for the past few days. The combination we're using
now seems to be a good mix ~ Joshua is not sleeping the
bulk of each day & he's predominantly happy & enjoying
life when he's awake. Any breakthrough headache is
fairly-easily controlled with an extra dose or two of
oxycodone. Most importantly, Joshua is not feeling
stressed-out by being so sedated that he misses out on daily
life. His quality of life is good again.
Joshie told Megan, Adam & me that he is not ready to go to
heaven yet. He assured us that he will send rainbow-
colored butterflies when he goes, but he doesn't want to die
yet. In-keeping with our desire to respect Joshua's wishes,
we are doing our best to ensure that he remains able to do
the things he enjoys. As things progress, it's becoming
more of a challenge (such as trying to keep his pain under
control while minimizing the sedation effect), but since
Joshua is not ready to stop fighting, neither is anyone else
in the family.

Written March 28, 2012 1:07am by Kate Parker
Sigh... Some stretches on this journey are so smooth I can
glide along without much thought, relaxed & able to admire
the scenery as I go. Other stretches are a bit bumpier, with
an occasional patch of gravel marring the road & requiring
some avoidance maneuvers lest I fall down. I make my
way around the gravel & feel pretty good about my ability
to stay on the road despite less-than-perfect
conditions. And then, suddenly, as I round a bend, I am
sideswiped by a bus that shoves me into a ditch on the side
of the road. Bruised & dazed, I climb out & slowly begin
walking again, only to fall into a pothole that I didn't see
right in front of me. Righting myself once again, I survey
the path in front of me before taking another step & am
dismayed by what I see: sinkholes everywhere, boulders
littering the roadway, and enormous storm clouds rapidly
approaching. Glancing both right & left, I realize there is
nowhere to take cover, and attempting to move forward
strikes me as foolish & just asking for further injury. I want
to move off the road & wait for the storm to pass, but know
that if I continue moving forward, I will get through it
faster. Yes, I know I'm going to get wet, as there is no place
to hide from the downpour heading my way, but I attempt
to make my way along the road, anyway, trying to navigate
despite my limited visibility. My prayer as the rain starts
hitting me is that God will move the storm quickly & guide
me along the safest route, & that there will be a smoother
stretch just up ahead once more.
Joshua's pain control regimen has been
changed. Methadone has been almost
doubled. Oxycodone slightly decreased. Fentanyl &
gabapentin remaining the same. The result? Controlled
pain once again. The price for this control? Increased
sedation ~ more sleeping, more "dopeyness" (like my
made-up word?) during his awake hours.
The increase in his pain represents the bus that sideswiped
me into the ditch. I just didn't see it coming. The change in
his pain meds represents the pothole that I should have
seen, but totally didn't. I should have anticipated the
increased sedation, but for some reason, it didn't occur to
me. Or maybe I just forgot. Regardless, the emotional
impact is the same.
Joshua is NOT happy about the changed meds. He doesn't
like feeling sleepy all the time. He does not want to "sleep
all day". I told him that I understood & I was really sorry,
but when he hurts more & we have to give him more
medicine, it will make him sleep more. There's nothing I
can do to stop that from happening.
Well... maybe. I mean, I can't stop it from happening, but
maybe I can postpone it for awhile longer.
Technically, there may be something we can do...
something suggested to me by our pediatrician at the
encouragement of the palliative care doctor & something
that Charley & I agreed to try after talking to Joshua (he
gets a vote since it's his life), Megan & Adam (they get a
vote because they're adults in our immediate family) & a
few trusted friends (because a wise man has many
counselors), but it's being discussed by Joshua's medical
team to determine if the risk-benefit ratio makes it worth
trying. At the risk of irritating people, I'm not going to
explain what the "something" is unless we decide to move
in that direction. It's one of those things that will be
controversial & I don't have the emotional stamina to face
negativity over something that may never come to pass. So
why bring it up at all? Because it's a big deal at my house
right now & I'm keeping this journal so that I can come
back & read it again someday, so I want to make a note of
it for myself to remember at what point it came up.
Joshua continues to be happy when he's not hurting, but the
increased sedation makes him more quiet & less "with it"
when he's awake. It also causes him to sleep more. That is
the rain pelting me, cold & stinging.
This storm hurts. I can't huddle on the side of the road
doing nothing. I want to cradle Joshua in my arms & run
through the rain to get past it as quickly as I can, but the
terrain is rough & uneven & I don't know exactly where I'm
going & I won't risk dropping my precious son, so I'm
forced to slow down & pick my way around obstacles,
instead. All the while, the rain doesn't let up & we're both
getting soaked. It's pretty miserable.
I know there's blue sky & sunshine somewhere up
ahead. My biggest prayer as I navigate this lousy part of
the journey is that Joshua will get to enjoy happier days
with me (and the rest of our family). I can't keep moving
through this downpour without believing it's possible.
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
Written March 25, 2012 6:56pm by Kate Parker
It's another day of multiple extra doses of pain
medication. Joshua ended up taking an 8.25 hour "nap"
yesterday, then woke for an hour & then was back to bed
for the night. He's telling us that he has two cramps in his
head & it hurts either "medium" or "lots". Dose upon dose
upon dose of oxycodone isn't knocking out his pain. I've
emailed our pediatrician for advice & direction about what
the next step is.
Today marks 1 year since I sat down with our geneticist &
learned that Joshua had two chromosome abnormalities,
one of which is incompatible with long-term survival. One
year has elapsed since my world was rocked. Before
March 25, 2011, we (my family & his medical team)
believed that Joshua had a mix of conditions that would
require multiple hospitalizations & surgeries throughout his
life, but he would grow up & have a normal (with some
modifications) life. My meeting with Dr. A changed all of
that & with our discussion came the realization that Joshua
would never grow up, never graduate high school, never go
to college, never get married, never be a father. We would
not get to see him as an adult... we would not know what he
would look like, how his voice would sound, what interests
he would have. All of the anticipations/expectations that
parents have for their children ~ all of those "firsts" that
parents generally assume will happen one day ~ were
stripped away one year ago. Instead, we joined the ranks of
parents facing the death of their children & we were
promised membership into a club that we never wanted to
join ~ those who have had their child die.
No one has ever been able to give us a road map for Joshie;
instead, the consensus for the past year has been that our
little boy is writing his own book. I've been forced to learn
how to let go of my driving need to know what is going to
happen next. I still like to be as prepared as possible, but
this past year has taught me that sometimes, I need to just
sit back, trust God & realize that He has a situation under
control.
A year ago, a new diagnosis blew apart our world. As
emotionally taxing as this past year has been, though, I can
still say I am thankful that we learned about Joshua's
chromosome abnormalities. Having a definitive diagnosis
that tied all of Joshua's "issues" together gave us some
peace of mind. We no longer had to wonder WHY he was
having so many problems. For the past year, we have
known, and despite it not being a good (ie: fixable)
diagnosis, it has been beneficial having it. If nothing else,
knowing that Joshua has a terminal condition has enabled
my family to readjust our priorities & spend time doing the
things that actually matter over the past 12 months. I guess
that's the silver lining of March 25, 2011.
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
Written March 24, 2012 11:09pm by Kate Parker
It's been an up-and-down week for Joshua. He has
continued to need some extra doses of oxycodone each day,
which isn't too bad, but today has been a very, very hard
day. He's needed at least one extra dose between every
scheduled dose (twice, he needed 2 extra doses between his
scheduled doses). Joshua said that he had two cramps, not
just one, in his head. He wanted me to make him feel
better. I did my best, giving him the maximum amount of
oxycodone possible as often as I was safely able to give
it. When it wasn't enough, he cuddled up in my lap with
his pillow & blanket and went to sleep a bit after
4:30pm. As I write this at almost 10pm, he's still
sleeping. It's sad to know he went to sleep as an escape
from the pain, but I'm thankful he has that escape. While
he sleeps, we feed & medicate him per his usual
schedule. I'm hoping he'll wake up for a bit at some point
tonight so he can empty his bladder (he has to crouch to do
it). If he stays asleep, I'll just cath him, but I'd rather he
woke up & went on his own. It would allow me to assess
how his head is feeling, too.
Having this kind of day so soon after increasing his
methadone is discouraging because what usually happens is
we increase the methadone & that eliminates our need to
give PRN doses completely for weeks. This time, though,
it didn't happen. I am hoping that tomorrow will be
better. Joshua has had times when he has a very bad day
followed by many good days, so I am praying that
tomorrow will be a complete opposite of what today was.
In other, Joshua-related news, he saw his pediatrician
yesterday. He's lost 2 pounds in the last 3 weeks, so I am
increasing the amount of formula he gets via g-tube feeds
(just adding another feed per day). He'll have an EEG this
next week, too, to evaluate the seizures that he seems to be
having. I don't plan to put Joshua on any more antiepileptic medications (he is already on one) since the cause
of any aberrant electrical activity in his brain is most-likely
neurons dying as a result of increasing pressure. As such,
medication isn't going to fix anything; it would just sedate
the heck out of a child who is already sleeping more than
his fair share of any given 24-hour period. However, his
doctor still wants us to do the EEG, so I agreed to it since
it's non-invasive.
To end this on a happier note, let me share about Joshie's
newest friend. Bee is a small stuffed animal with a zipper
compartment that we have to keep filled with chocolate
candy (yes, "have to" ~ Joshua will ask us to "make Bee fat
again" when Bee runs out of candy). A couple times each
day, Joshua will unzip the compartment & take out a piece
of candy, telling us that it is Bee's snack time. He'll pretend
to give Bee a few bites of chocolate & then announce that
Bee is full, so he gets the rest. He shares Bee's snacks, too ~
even with his pediatrician yesterday! He carries Bee around
wherever he goes & when he needs both hands to do
something, he sets Bee in my lap for safekeeping. It's
adorable.

Written March 20, 2012 12:13am by Kate Parker
Increasing Joshua's methadone did not give us the
improvement we were seeking, so I'll be calling Dr. S
tomorrow to ask her what we do next. It's pretty sad when a
6 year old says, "Oh, by the way, my head has a bad cramp
& hurts," in the same way you'd expect to hear a kid
mention that they were out of clean underwear. He is so
resigned to hurting... so accustomed to it... and that makes
me profoundly sad.
He's rarely eating or drinking anything anymore & often
says that whatever he did eat makes him feel "not good"
even though he ate only a few bites. Thankfully, he is still
tolerating his g-tube feeds without any problems, so I've
made adjustments & am feeding him more formula & water
to compensate for the calories & fluid he is not getting by
mouth anymore.
A few minutes ago, he fell off the cube chair he was sitting
in (it's a therapy chair with the seat about 6 inches off the
ground & sides that wrap around and support a child's
torso). How? Just lost his balance & slipped off the seat.
He randomly drops things he's holding & is surprised that
they fell out of his hands.
There are too many "little changes" to ignore... they all
point to deterioration, which is just really, really hard to
see.
Please keep praying for Joshua ~ for his comfort & for
good pain control & for him to continue tolerating his gtube feeds. We know he's going downhill, but we so want
him to remain happy as he goes. I have no idea if he has 2
days, 2 weeks, 2 months or 2 years remaining before he
goes to heaven, but what I want most while he's still here is
for him to not suffer. It's hard enough watching my son
decline; my prayer is that God will spare my family & me
the heartache of seeing Joshua hurting & not being able to
take that pain away. If we ever get to the point that we
simply cannot control his pain with oral (or g-tube, rather)
medications anymore, we will admit him to the hospital &
give him enough IV medication to get him, and keep him,
completely pain-free. I don't ever want to have to do that,
though. Joshua wants to die at home, surrounded by his
stuffed animals & his family. He doesn't want to be in the
hospital. We want to honor his requests if at all possible,
but the one thing we all are in agreement on ("we all" being
Charley, Megan, Adam & me) is that if staying home
means Joshua would die an agonizing death, we aren't
going to let him stay at home. Aside from not wanting him
to go through a painful demise, none of us wants to live
with the memory of watching Joshua die in pain. So... if
you are praying for him, please join us in praying that God
will make a way for us to maintain good pain control such
that Joshua can continue to decline slowly until he
peacefully passes away at home (hopefully not any time
soon).
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
Written March 16, 2012 7:46pm by Kate Parker
The past couple days have been tough on Joshua. More
pain (he describes it as a "cramp in his head"), more need
of oxycodone, one day spent sleeping all but 3 hours. Not
fun.
Our pediatrician spoke with Joshua's palliative care doctor
& the recommendation is to increase his methadone by
10% since it has helped in the past with getting Joshua's
pain under control.
I don't have any profound words to write. I just wanted to
make note of this change.
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
Written March 14, 2012 6:10pm by Kate Parker
Yesterday afternoon, the kids & I did a balloon release in
honor of a sweet little boy named Brent Ritterbusch who
had bravely fought mitochondrial disease &
hemophagocytic lymphohistiocytosis for almost 6 years
before going to heaven on Friday, March 9th. His funeral
was yesterday. Talking about Brent being in heaven &
then doing the balloon release led to Joshua & I having one
of our late-at-night conversations.
It began with us talking about the balloons we'd sent up to
heaven for Brent & quickly segued into a discussion of how
sometimes God sends a special sign to let people who aren't
in heaven yet know that a person they love who is in
heaven is okay. Joshua liked that idea a lot, so I asked him,
"If God would let you send a sign to people who aren't in
heaven yet so they would know you're happy & okay, what
do you think you'd send?" Joshie thought for a moment,
then thoughtfully answered, "Butterflies."
"Butterflies? Really?" I asked, and he repeated it more
confidently, "Yes, butterflies. They are pretty and they
have wings that can break." I agreed with him, saying,
"Yes, I know; you can't touch butterfly wings because the
oil on our fingers damages them." Joshua asked, "What
happens if they get broken wings?" I paused, then told
him, "Well, I think they just walk around a bit, but then
they die because they can't fly anymore." He wanted to
know what happened after they died, so I told him that they
would be in heaven, too (no, I don't actually know what
happens to butterflies). "But what happens to their broken
wings?" I assured him that God would fix them... that God
can fix anything... and that made my little guy happy. He
was quiet for a minute, then asked, "Do butterflies land on
people?" I told him they could, but I don't think it happens
very often and that I've never had a butterfly land on
me." Again there was a pause as Joshua thought about my
answer, then he announced, "I think I'll send a butterfly to
land on you."
That was the first indication he has ever given that he might
understand that I am not going to heaven at the same time
he is. We have never told him that we would be going to
heaven together; we've just assured him that he would not
go alone.
I snuggled Joshua closer to me as I told him, " I think that
would be beautiful." Then, suddenly, his voice grew louder
& stronger with barely-contained glee as he told me, "I
think I'll send sad faces to everyone else!" "What?" I was
utterly perplexed. "I'll send sad faces because everyone
will think I'm sad but really I will be happy, so it will be a
joke!" He was thrilled by the idea & got into a fit of
giggles as he contemplated sending people on earth a bunch
of sad faces as a joke. All I could envision were those
yellow smiley-face balloons/signs when he was talking
about sending sad faces. It made me wonder if there are
yellow sad faces, too. Megan said that if we see a sad face
cartoon or balloon or whatever in some random place after
Joshua dies, she will know it's a sign from him.
I asked Joshie if he thought he would be happy in heaven,
to which he answered, "Yes. I get a new body. It's gonna be
GREAT!" I'm not sure if he was referencing heaven or the
glorified body he will be given in heaven when he said it
would be great, but either application is
appropriate. [Update: I asked Joshua what he meant and
he said he was referring to the new body he is going to get.]
More & more, the kids & I are chatting about heaven as a
part of our normal conversation throughout the day. We're
talking about topics such as how, when a person who has
accepted Jesus dies, they don't really stop living ~ instead,
they make a transition from living here on earth to living in
heaven with God, where everything is so much better than
here. I want my kids to be comfortable with heaven & to
look forward to going there rather than fearing dying one
day. I want them to realize that the place their brother is
going is a good place & he will be happy there while he
waits for us to join him. I think we all benefit from being
reminded of that.

Written March 9, 2012 9:46pm by Kate Parker
Sometimes I find it incredibly difficult to put into words
what is going on with Joshua. Simply put, some changes
defy easy descriptions. It would be easier to tell myself,
"Okay, I've noticed that... and that... and that," & then move
on, but I know that the day will come where I forget when
"that... and that... and that" began & I will wish I had
written it in this journal. So I will try to explain what is
different now.
I feel like I need to preface this by saying that I rarely write
about new things until I am fairly certain that a new "thing"
is a change that is sticking around. So on the first day that
Joshua had difficulty yawning, I didn't say anything
because I didn't know if it was because he was having an
off day or what. When he had multiple days of having
trouble yawning, I wrote about it to acknowledge that it
was a definite decline. When I say that he's been having
problems in some area for a week or for two weeks, yet I
haven't mentioned it in any journal entry during the past
week or two, it is because I either haven't realized yet what
is happening (some changes are more obvious in hindsight
~ you don't realize that what you've been seeing is
significant until it has been happening consistently for
awhile) or because I'm not certain that what I'm seeing is
permanent. For example, Joshua had increased pain for a
few days a couple of weeks ago. I was giving him multiple
PRN doses of oxycodone each day & I wondered if we
were going to need to increase his meds & if this was a sign
of further decline. At the same time he was needing extra
pain medication, however, he was fighting a cold virus, so
instead of journaling that Joshua's pain was increasing, I
waited to see if he would go back to baseline after the virus
was gone. He did, so I never mentioned it here. I don't
want to be confusing, so I try very hard to get the
information correct. So! Is all of this babbling leading to a
point? Yes, actually. The point is, if I write that Joshua's
been having trouble with something for X amount of time
but have failed to mention it in previous posts during that
time period, there's a reason for it & it's not a sign that I'm
being dishonest or exaggerating. I'm not. On either
count. Watching my child decline toward death is dramatic
enough ~ I don't try to intensify anything for attention,
contrary to what some might think (and if you're one of
those people, I encourage you to avail yourself of the little
red "x" in the upper right-hand corner of your screen & end
your frustration).
So.....
Joshua's latest head pain is described as a "cramp". It's not
the same as the "ball" pain. It's located directly over his VP
shunt. What is causing it? No idea. I asked & was told
that since we aren't doing any more surgery, let's just keep
Joshie comfortable & not worry about figuring out what,
specifically, is causing the pain. Thankfully, extra doses of
oxycodone take away the cramp.
In the last week, Joshua's walking has changed. The best
way to describe his new gait is to compare it to a pottytraining toddler who has had an accident. In that situation,
the kiddo adopts a wide-legged stance & squats a little bit
as they walk, attempting to get the wet away from
themselves. Emily's description was, "He looks like a
cowboy who is waddling." My guess is that the gait
changing is a direct result of Joshua's spinal cord being
tethered. We're seeing more signs indicating that it's
becoming a problem.
He has a 1 inch wide & roughly 4-5 inch long indentation
in his lower back along his spine caused by the scar tissue
inside his back pulling inward on the surrounding
structures, which tugs at his skin & makes it look "sucked
in". He's having more difficulty urinating & producing a
bowel movement. He has to be in a squatting position in
order to pee. He used to just go (he's still in diapers), then
he needed to squat first thing in the morning but could be in
any position during the remainder of his awake hours, and
now he has to be squatting if he's going to be able to pee. I
suspect that this could progress to where I will need to cath
him regularly again. I will pray that Joshua once again
loses all sensation if we get to that point because otherwise,
it will be torturous to have to cath him every 4 hours (he
regained some abnormal sensation after being detethered in
November, 2009, which made cathing excruciatingly
painful; as such, I now cath him only when absolutely
necessary). We're steadily approaching the point where
enemas are going to be back in our routine (like cathing, we
were able to stop using enemas after the detethering in
November, 2009 & placement of the LP shunt enabled
Joshua to regain some sensation & the ability to void
without help).
My biggest concern regarding the tethered cord is the
downward traction it places on his brain stem. That,
obviously, is a no good, terrible, very bad thing. I can't
help but think that Joshua's cord being tethered will
contribute to shortening his life (I know, I know, he'll have
as many days as God ordained for him) & it makes my
chest ache to know Dr. W would gladly detether Joshua
again if only he were willing. Logically, I know that
detethering his cord would probably not make a huge
difference ~ his brain stem is going to continue
deteriorating regardless of what we do or don't do & he
might not even survive another surgery at this point,
anyway... and asking him to endure another operation when
I know it would mean another month or more in the
hospital & away from his daddy & siblings would be cruel
to everyone in our family ~ but what my head thinks &
what my heart feels are sometimes vastly
different! Reconciling the two can be a challenge for
me. Bottom line, though, is that I committed to honoring
Joshua's wishes & I'm not going against that. This is his
body, his fight. I will do everything possible for him as
long as it doesn't go against what he has made clear he does
& does not want. Honestly, it's one of the hardest things
I've ever had to do. As a mom, everything in me screams
to DO SOMETHING! It's agonizing knowing there ARE
things we could do, but they probably wouldn't help much
& would really only guarantee Joshua more weeks or
months of pain. I thank God for giving Joshua wisdom to
know what is best for himself & I thank God for giving me
the strength to respect my child's decisions.
I'll admit, in the past, I have read blogs where parents chose
to let their terminally-ill child lead the way & respected the
child's decision to not pursue further treatment, and I
thought they were crazy. I could not fathom WHY an adult
would listen to a young child who couldn't possibly
understand the choices they were making or the
consequences of those choices. Ha ha ha... joke's on
me. As usual, the phrase, "There but for the grace of God,
go I," is apt. I should learn not to be so judgmental because
dang, God always gives me the opportunity to learn firsthand and this is something I REALLY would have been
happy to never experience! Seriously though, I now
understand what those other parents were doing & it makes
perfect sense to me now. From my perspective, I spent 5.5
years doing everything I could to help Joshua live the best
life he possibly could. I made the decision to put him
through 29 surgeries & 100+ other procedures (yes,
Charley did, too, but I'm speaking about my perspective
only). I did not consult my child & ask if he wanted to
have his head or back or leg or chest or abdomen cut open,
or another MRI or another blood draw. I didn't ask him if
he wanted to take medications. I weighed the pros & cons
& ultimately decided what was in Joshua's best interest. He
had no say in the matter until it became clear that he was
not going to have a normal lifespan. Slowly, as his world
has grown smaller, it has been natural to give him more
control over the things we are able to ~ things like when he
wants to sleep, what he wants to eat, what activity he wants
to do, and what treatments he wants to do. There are still
some non-negotiables, such as port flushes. He hates 'em,
but they're mandatory to keep his port from clotting &
being useless, so we do them because even though Joshua
doesn't want to go to the hospital anymore, there remains
the possibility that we will eventually need to utilize IV
medication for pain control & we'll want his port to work
for that. Anyway, the point I was trying to make is that I
understand now why parents would give up control of
medical decisions to their very young child. Joshua
understands what is going on with his body; maybe not in
technical terms, but he knows how he feels. He knows
what hurts, he knows what helps, and he knows he is going
to go to heaven no matter what we do. As such, I can give
him control over most of the decisions in his life because
there aren't any long-term repercussions to consider like
there are with kids who are expected to grow up & become
independent adults. It's definitely not how I began
parenting my little guy. It's not how I parent any of my
other kids, either (a fact that probably disappoints them at
times, LOL). And no, none of the other kids are resentful
of Joshua, probably because they all know the reason he
gets to call the shots in his life (for the most part) is
because he's dying. Nothing to be jealous of there.
Okay, so.. wow, I totally got off-track! Let me see if I can
get back. LOL
The other, more-concerning "thing" we're seeing every day
is forgetfulness. I don't know what to call it, actually. I
don't know if it's "short term memory loss" or "processing
delays" or what. The proper terminology eludes me. What
we are seeing manifests as Joshua not knowing how to do
the next step in a well-known process. For example, he
opens a mini Reeses peanut butter cup, then holds out his
hand with the wrapper & asks, "What do I do with
this?" He gets instructed to put it in the garbage & will
pause, thinking, before beginning to move. Sometimes he
takes a few steps, then gets stuck & has to be reminded
where the garbage can is ("Go into the kitchen,
Joshua."). Other times, he seems to forget where the
kitchen even IS & will need verbal prompting to find the
room, even when he is standing just 5 feet away from his
destination! Then, after he throws the wrapper away, he
will come back to the family room, unwrap another Reeses
peanut butter cup & once again ask, "What do I do with
this?"
It's not a game. He isn't giggling or joking. He isn't
playing that he doesn't know where the kitchen is or where
the garbage can is. He is sincerely perplexed each & every
time he has a piece of trash in his hand because he can't
figure out what to do with it. The same thing happens with
other objects (toys, shoes, etc), too ~ he'll hold out a spoon
& ask me, "Where do I put this?" He can't remember
where things go even though they're objects or routines he
has had for years.
I don't know what is causing it. I don't even know what to
CALL "it"! But whatever it is, he's been doing it for a few
weeks now. I don't think it's getting worse, but it's more
obvious to the adults in the house because we finally
realized it was happening & then we began actively paying
attention & were shocked by how frequently Joshua was
unable to recall where something belonged. If I had to
guess, I would venture that his brain stem isn't processing
information as effectively as it used to & it's not allowing
his brain to send out messages 100% of the time (some
signals get lost because of the deterioration of his brain
stem). If that's not what is happening, then I have no
clue. It doesn't really matter, either. It's not something we
can fix. It's just something to recognize & make note of. It
is disturbing, though. I can't lie & pretend it's not. Every
sign of further decline takes my breath away until I remind
myself that Joshua is still here, still predominantly happy,
and still enjoying his life. Then I remind myself that God
is still here, still in control, not at all surprised by what is
happening, and then I am able to relax again.
Yesterday, I was blessed to spend a good chunk of time
with the hospital chaplain who has become a special friend
through Joshua's numerous hospitalizations. During the
course of our conversation, he painted a word picture for
me of God as a mother hen, gathering her chicks under her
wings to provide comfort & safety during a storm (there are
many Bible scriptures that speak of man taking refuge in
the shadow of God's wings ~ Psalm 91, for
example). Chaplain Merv told me that God has Joshua
under His wing & He has me there, too (and the rest of my
family), keeping us safe. It was wonderfully comforting to
me & is a mental image I will hold onto in the days to
come.
When I got home from Portland today, there was a package
from another special friend ~ a birthday gift (my 42nd was
on March 5th) ~ and one item in the package was a magnet
that says, "TRUST" along the left border and has the verse
"I will take refuge in the shadow of Your wings," (Psalm
57:1) on the body of the magnet. What a coincidence,
eh? Yeah, not so much. More like God trying to tell me
something! He wants me to run to Him during the painful,
scary & difficult times in my life. He wants to shelter me,
protect me, comfort me & provide for me. All I need to do
is let Him!
God shows me that He is merciful & loving as He keeps me
surrounded by people who love, affirm, support &
encourage in ways that resonate deeply within my heart. If
I had to walk this road without any other human contact, I
could because I know I'm never truly alone (since God is
always with me), but He knows that having companions to
walk with makes the painful portions of a journey bearable,
& He is so gracious to ensure that I don't have to be
physically, emotionally, spiritually, or mentally
alone. That is what enables me to keep going each day & I
am so, so, SO grateful to God for His provisions &
direction, especially when the path is beginning to get more
rocky. It is my hope & prayer that what we're seeing with
Joshua is a small decline that will be followed by another
plateau period of relative stability, but of course I have no
way of knowing what lies ahead. Instead of fretting
unnecessarily, I am taking refuge in the shadow of God's
wings (not literal wings, by the way.... it's a figure of
speech) & trusting in the One who is in control. It truly is a
comforting place to be.
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
Written March 4, 2012 8:24pm by Kate Parker
Joshua's party yesterday was everything I had wanted it to
be and more. I don't think it could have been any more
perfect. The picture to the left was one taken at the party. I
think it speaks to the joy of the day for Joshua. Truly, it
was a wonderful event & I am sure the memories made will
be forever cherished by all who attended.
Unfortunately, there are a few new developments to
report. Joshua is now unable to yawn. The muscles of his
mouth just don't work properly to allow him to open wide
& stretch anymore. He tries, then announces, "I'm having
trouble yawning." Instead, he opens his mouth about
halfway, sticks his tongue partway out, and does a modified
yawn. I've tried it & found it to be utterly unsatisfying. As
silly as it may sound, I feel really sad for my little guy that
he can't open wide & let loose with a big ol' yawn when
he's tired. It's one of those things that you realize means
more than you thought once the ability to do it is gone.
He is also having more episodes that appear to be
seizures. I had four people approach me separately at the
party to ask if Joshie is having seizures now & to describe
what they had seen, and two medical professionals told me
they thought it was seizure activity they were watching,
so... I think that is what we're all witnessing. We haven't
done an EEG since the end of December, 2010, & I don't
know that we will (it's kind of one of those "what's the
point?" things), but I'll check with our awesome
pediatrician to get her opinion. I don't know whether or not
we'd treat seizures, anyway, so I'll defer to the experts
about that.
One of our therapists who attended the party summed up
Joshua really well when she said, "He's declining, but he's
happy as he goes." The adults who were part of the
discussion were all quiet as we thought about that statement
for a moment, then we all agreed that yeah, that really is
how things are, and really, if Joshie is going to have to
decline, this is the best way to have things happen. Having
seen him decline while his pain increased, I can
emphatically state that I would MUCH rather he lose skills
& strength while still being able to smile, laugh & enjoy
what he CAN still do. I mean, obviously, I'd rather he not
decline at all, but since that isn't an option, I do believe
God is blessing both Joshua & our family by allowing
Joshie to slowly slide downhill while maintaining the
ability to be happy & enjoy life to the fullest that he can
each day. We really can't ask for more than that.
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
Written March 3, 2012 12:23am by Kate Parker
Joshua's birthday
celebration has been tremendously fun so far! He opened
gifts from his siblings today & will open gifts from his
daddy & me (and some extras sent by loving Aunts)
tomorrow. He's very excited for his party.
Charley, Megan & I spent several hours tonight decorating
for the party. What we've done to turn our living room into
an underwater aquarium is, by far, the most-extensive
decorating ever (for us). We all agreed, however, that
Joshua is worth it & this birthday celebration will be one to
remember.
The picture attached to this entry is a preview of what
tomorrow holds. It is going to be spectacular!

Written March 2, 2012 2:01am by Kate Parker
Today is Joshua’s 6th birthday. There are many stories I
thought about sharing on this very special day, but I
decided this one was especially appropriate:
Six years ago, at almost 11am, Joshua came into the
world. Because there had been a blood incompatibility
between the two of us during the pregnancy (antigenc/antibody-c), we were prepared for Joshua to quickly go to
NICU to be stabilized. What we weren’t prepared for was
the discovery of a birth defect. Charley had been sitting at
my head during the c-section and a friend had been taking
pictures. After Joshua was handed over to a nurse &
carried to a warming bed, my friend stood on a stool taking
pictures. I was watching her & was puzzled when I saw
her lower the camera & beckon Charley with hand gestures
to come over. He asked if I was okay, then walked over to
where Karen was standing. I saw her point & Charley’s
gaze followed her finger to where our son was laying in the
warmer, surrounded by 4 gowned professionals. I watched
Charley’s eyebrows go up in surprise, then down as he
frowned, but I could not read more of his expression since
he was wearing a mask. He turned to speak to my friend
for a moment, then walked slowly back over to where I
was. I asked, somewhat alarmed by what I couldn’t
decipher in my husband’s eyes, “What’s wrong?” He
stroked my arm as he calmly answered, “Oh, the baby was
pretty purple at first, but he’s pinking up now and doing
better.” I knew he was lying to me, holding something
back, so I again demanded, “Charley, WHAT’S
WRONG?!?” He leaned close to my face & said in
measured tones, “Kate, he has spina
bifida.” “WHAT!?!?” I think I yelled that question fairly
loudly. I asked how that was possible; after all, I’d had
ultrasounds every single month of my pregnancy ~
sometimes two scans in a month ~ and they’d missed a
neural tube defect? I was shocked & scared & a whole
mishmash of other emotions all rolled into one. Mostly,
though, I felt helpless. I was 10 feet away from my baby
and could not get to him because I was still being sewn
closed. I don’t remember if I was crying at that point or
not. Probably so. I just don’t remember. Charley went
back to where Joshua was being taken care of. Karen was
so shocked, she forgot to take any more pictures. It was
okay; I wouldn’t have remembered to, either.
I was transferred to a bed to be taken to recovery right
when Joshua was ready to be transported to NICU. I still
hadn’t seen him & I asked the nurse adjusting my IV at the
head of the bed, “What does he look like?” She shouted
out, “Wait!” as she rushed over to Joshua’s isolette, picked
him up & brought him to me. She laid my baby in the
crook of my right arm& I was able to kiss his head once,
stroke his cheek momentarily & touch his tiny hand as I
quietly told him I loved him before he was being lifted out
of my grasp & hustled off to NICU. I remember crying
then.
Recovery was somewhat of a blur. I remember being there
for longer than anticipated due to some hemorrhaging. I
remember shaking uncontrollably & itching terribly from
the morphine I’d been given. Charley was alternating with
Karen so that one of them was always with Joshua & one of
them was always with me. At some point soon after
Joshua’s birth, our pediatrician’s nurse, K, showed up to
see the new baby& was told about the spina bifida. I found
out later that she immediately went to NICU and stayed
there the remainder of the day so that Joshua would not be
alone if Charley or Karen needed to eat something or use
the bathroom or go for a short walk to get a break. She
kept vigil by my son’s bed, loving him, praying over him &
quietly talking & singing to him because I couldn’t. There
really aren’t words to say how much that meant to me,
especially since the ped’s nurse & I weren’t yet friends…
our relationship up to that point had been limited to the
usual “nurse-parent acquaintance”. We’d only lived in the
town we were in for 1.5 years, so it’s not like nurse K had
years of experience taking care of my other kids,
either. She’s just one of those people who are truly an
angel on earth, and I learned that the day Joshua was born.
I don’t think I talked much while I was in recovery, at least
not coherently, as I was pretty loopy from the meds I’d
been given. I don’t remember being moved to a regular
room, but at some point, I “woke up” enough to realize that
had happened.
When I was no longer in a drugged stupor, Charley was
gone, but Karen was there. She informed me that Charley
had left to go attend to our other children at home &
explain to them that the plan had changed. Originally, I
was going to have the baby & then, after a few hours for
me to recover, Charley was going to drive home, pick up
the kids & bring them to the hospital for a short visit with
their new baby brother (it had been anticipated that Joshua
would be in NICU only briefly). With the discovery of the
bulge on his lower spine & the “V” shaped flap of skin that
could be lifted like a soda can tab, revealing a tiny hole that
was leaking clear fluid (turned out to be cerebrospinal fluid
coming from a dermal sinus tract ~ a tube running between
his skin & spinal canal), every plan we’d had had utterly
changed. Charley had to explain to the kids (Megan was
14, Adam 13, Emily 6, David 4, Sarah 4, Isaac 2) that their
new baby brother had something wrong with his back &
would not be able to have visitors that day. I felt so sorry
for him having to disappoint the kids & try to explain
something that he didn’t really understand yet,
himself. Neither of us knew much about spina bifida,
especially lipomyelomeningocele, which is what was
diagnosed after an ultrasound was done & a tumor (benign)
was seen embedded in Joshua’s back & wrapped around &
inside his spinal cord. Karen & I ordered lunch and then,
while waiting for our food to arrive, I called a friend who
has a child with spina bifida & asked her for
information. She quickly pulled out one of her books &
gave me the basic rundown on lipomyelo. It didn’t sound
too bad, actually, and I calmed down significantly after our
conversation.
The rest of the day was a blur of tears, pain medication, and
a very short visit to NICU, where I was not allowed to hold
or feed Joshua because he was having breathing
problems. The next morning, I was waiting for Charley to
get to the hospital when the a pediatrician walked into my
room. He sat at the foot of the bed, rested his hand on my
ankle& said, “Kate, I am so sorry about your baby. As you
know, he has a form of spina bifida. He also has what is
called a ‘dermal sinus tract’, which is allowing spinal fluid
to leak out through his skin. This is a huge infection risk,
so he will need to have surgery very soon. He is going to
be flown to Portland to OHSU in just a little while, where
he will be seen by a neurosurgeon.”
I began crying as soon as the doctor started talking (gotta
love postpartum hormones!) and when he mentioned
Joshua being flown to OHSU, I immediately disagreed,
saying, “No, no!” Dr. C, not understanding my distress,
cooed reassuringly, “I know, I know, but he’s going to be
okay. They are going to take really good care of him.” I
again insisted, “No!” then went on to explain, saying, “No,
I don’t want him flown to OHSU. I want him taken to
Legacy Emanuel.” Dr. C asked, “Why?” and I answered,
“Because that is where our neurosurgeon is at.” His jaw
literally fell open & he said nothing. Seeing his expression,
I sniffled, then asked, “What? Doesn’t EVERYONE have
a neurosurgeon?” That made both of us smile & I told Dr.
C how 3 of my kids had chiari malformation& 2 had had
brain surgeries & tethered cord releases done by Dr. W at
Emanuel, so I would feel a lot better about her taking care
of Joshua than anyone else. He agreed & said he’d go
change the orders immediately. He gave me a hug before
leaving, then told me that if I wanted Charley to go with
Joshua to Portland, he needed to get to the hospital within
the hour because that’s how soon Joshua would be flown
up.
I picked up the phone to call Charley & I tried to tell him
what was going on, but I was crying so hard that I was not
even remotely understandable. Karen took the phone from
me & spoke to my husband, explaining the situation & that
he needed to pack a bag quickly, then drive to the
hospital. After hanging up, she & I walked very slowly to
NICU (I didn’t want to wait around for someone to find me
a wheelchair) so that I could spend every minute with my
baby until the transport team came for him.
The NICU nurses got a wheelchair for me & then allowed
me to hold Joshie for the first time. I was still not allowed
to nurse him, which was agonizingly difficult, but I let him
suck on my finger & he looked at me momentarily before
falling asleep. The minutes passed by too quickly & it
seemed Charley was there in an instant, followed closely by
the transport team. I reluctantly handed Joshua over to
Charley with a last kiss, tears continuing to stream down
my face as they had for the entire 40 minutes I’d been in
the NICU. I briefly wondered if the nurses thought I was
being hysterical or overly dramatic with my tears, but it
didn’t stop me from crying. It was just so incredibly SAD
& not at all what I wanted to be happening. Charley & I
talked quickly while the team was loading Joshua into the
isolette & preparing him for travel. I don’t remember what,
exactly, we spoke of. Probably how he would call & how I
was going to get discharged & go home to be with the other
kids. It was only about 10 minutes and then they were
leaving for the ambulance that would take them to the
airport to fly north. I hugged & kissed Charley, begged
him to take care of Joshua, then sobbed as I watched him
walk away, trailing behind the paramedics pushing our
baby on the stretcher.
Karen pushed me back to my room & I immediately began
bugging the nurses to get discharged. I ran into problem
after problem, as they did not want to let me go so soon
after a c-section. I explained that I had 6 children at home,
the oldest was only 14 & 3 had autism, so I HAD to go
home TODAY. Megan was taking care of everyone, but I
knew she couldn’t do it overnight & there was no way I
could ask her to. Isaac was still nursing & would want only
me. My friend, who had stayed with me thus far, had to fly
home the next morning. So nope, staying another night at
the hospital was out of the question. We hashed out a plan
for her to go to my house & help the kids with lunch&
naps, then she would come back to pick me up & bring me
home. We figured that would give me enough time to
convince my doctor to let me go.
Karen left, then returned about 10 minutes later when she
realized that Charley had taken the keys to the house & the
van with him. He’d driven to the hospital, then left to fly to
Portland without giving Karen the keys. OOPS! With
Karen stuck at the hospital with me & me waiting to have
my doctor come around so I could ask her to write
discharge orders, we had time to think about how we were
going to get home. No one I called was home (isn’t that
how it always works), so I called Nurse K at the ped’s
office and asked if there was any way she could help
me. She immediately offered to drive to my house after she
got off work & get the spare set of keys from Megan, then
she’d bring them to Karen at the hospital. I thanked her,
then called Megan to let her know to expect Nurse K & to
have the keys ready for her.
The next problem was getting me discharged. When an
obstetrician came to see me, I asked where my doctor was
& was surprised to hear she’d left a couple hours after
completing my c-section & making sure I was out of
recovery to go to Disneyland with her kids. I didn’t have a
problem with her going on vacation, but I was shocked that
she hadn’t said anything to me about leaving so that I
would know there’d be someone else overseeing things
with me after Joshua was born. Anyway, the fill-in doctor
adamantly refused to write discharge orders for me, saying
he did not care that I had 6 unattended children at home
because my husband had to fly unexpectedly to Portland
with our newborn son. Nope, he wasn’t letting me go. He
would not listen to anything I said & abruptly left the room.
When a nurse came in with my pain medication a short
time later, I was furious. Not at her, but at the entire
situation, and I was determined that I was
leaving. Period. I told her that I would remove my own IV
& leave AMA (against medical advice), but I was GOING
HOME to my children! I think she realized I wasn’t
kidding, because within an hour, she was back to take out
my IV & she had paperwork for me to sign. I did leave
AMA, but it was with full knowledge of the staff and not
with me sneaking out, as I had been prepared to do. I did
receive prescriptions for pain medication, though, which
was a godsend. I know some women think c-sections
aren’t very painful & they get by with just Tylenol, but I’m
not one of them, so I was thankful to have stronger meds to
take.
Right about the time I was signing the paperwork, Nurse K
arrived with the car keys for Karen. She organized my
things, helped me to the van after Karen pulled it around to
the front of the building, then took my scripts & said she’d
get them filled for me at the pharmacy so I didn’t have to
try to do it. Karen drove me home, helped me inside & got
me situated on the couch, where I hugged & loved on my
kids. Nurse K showed up with not only my prescriptions,
but some groceries & pizza for the kids! She refused to
accept any money & told me that she would be in touch the
next day to see how everything was going.
Soon after settling in, the phone rang & it was Charley,
telling me they’d arrived safely & Joshua had been very
busy having MRIs of his head & back, ultrasounds of his
bladder & other tests. Charley assured me that our boy was
resting comfortably & was sleeping peacefully at that
moment. He’d been allowed to feed Joshua ~ FINALLY! ~
and our sweet baby had drank 4 ounces of formula without
problem. Charley told me that he would be coming home
via Greyhound in a few days & then driving the van back
up to Portland. That way, he’d have Joshua’s things
(clothes & carseat for when he got discharged) & a way to
get to the store for supplies for himself. I told him I would
be pumping as much milk as I could (thanking God that
Isaac was still nursing, so I had a great supply already) so
that he could feed Joshua my milk instead of formula. We
said good night & hung up.
Joshua had his first surgery on March 9th, when he was 7
days old. Nurse K came over & spent the entire day with
me, saying that she did not want me to have to wait alone to
hear news of how the surgery went. Yes, she’s just that
wonderful. Charley called in the afternoon to let us know
surgery had gone well, and our neurosurgeon called me,
herself, later that evening to tell me the details of surgery,
what she had done, and what she felt Joshua’s prognosis
was. Since no one knew about the chromosome
abnormality or the chiari (he didn’t have one show up on
the MRI at birth, which is very common with chiari
malformation, type 1) or the connective tissue disorder, Dr.
W’s prediction that Joshua would have no bowel or bladder
damage & no nerve damage to his legs & would need to be
detethered again when was 5 or 6, but would otherwise be
totally fine sounded perfectly legitimate. Lipomyelo isn’t
supposed to be a “big deal” in the world of spina bifida. I
remember perfectly the huge sigh of relief that I let out &
the feeling that we had totally dodged a bullet. I remember
thanking Dr. W & telling her we’d see her in 2012. I had no
idea what the next 6 years would hold & how often Joshua
& I would be in Dr. W’s office. For a brief period of time,
though, we didn’t have anything to worry about; just a
sweet baby boy to love& enjoy.
Joshua came home on March 14th to signs & balloons
welcoming his arrival. Each of the children had a turn
holding him (using a pillow to protect his back) and then he
was finally in my arms again. As Charley & I sat together
on the couch admiring our youngest of 7, we both were
absolutely convinced there was something really special
about Joshua.
We were right.
Now, 6 years later, here we are, singing “Happy Birthday”
to a little boy who is so greatly loved & cherished by so
many. Six months ago, no one involved with Joshua’s care
thought he’d live to celebrate this birthday. Yes, we know
full well that if we hadn’t spent November inpatient in
Portland, the predictions made 6 months ago would have
come true. But we DID go to Portland, so praise God, here
we are, being blessed to celebrate one more birthday with
our amazing, strong, determined, lovable, funny Joshie. As
I think about this very special day, it occurs to me that it
may be his birthday & he may be the one opening presents
at his much-anticipated “Under the Sea” party tomorrow
afternoon, but I know without a doubt that it is those of us
who love Joshua who are receiving the greatest gift ~ more
time with him.
Happy 6th birthday, my sweetiepie Joshiebear. I love you
forever & a day.
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
Written February 29, 2012 10:51pm by Kate Parker
Our pediatrician & her nurse are two of THE most-amazing
and wonderful people on the planet! I took Joshua &
Bethany in for appointments today & was met with a huge
surprise ~~ Dr. S & nurse K had decorated one of the
rooms, transforming it into what they coined, "The Party
Pod", complete with streamers, balloons, bubbles &
yummy treats. I wheeled Joshie in & he was all smiles. He
quickly asked for a cupcake & devoured it while nurses
sang, "Happy Birthday" to him (his actual birthday is
Friday). His doctor blew bubbles for him to pop & we all
reminisced about the day he was born. It was just
incredibly sweet & fun & it meant so, so much to me that
they organized an office party to celebrate Joshua's
birthday. It's heartwarming to know just how loved Joshua
is by everyone there.
Dr. S understands the difficulty inherent in trying to
celebrate a milestone while grieving that it will be the last
time we do this. She & I talked privately, well out of
Joshua's earshot, about how he's doing, & she offered
words of comfort & encouragement along with her hugs.
Joshua's oral-motor coordination is not very good anymore
~ Dr. S commented on that after watching Joshua
unsuccessfully try to lick a bit of frosting from the corner
of his mouth. We talked about the new fractures in his
feet. We touched on his poor coloring & increasing
apnea. And she confirmed with me that Joshua was done
having surgeries. When I told her he did not want his port
accessed anymore, Dr. S got a slightly horrified expression
as she asked, "We're not at that point, are we? If he gets
dehydrated & is vomiting & just needs fluids and IV meds
to be stabilized, we can still do that, right?" I answered that
I hadn't actually thought about that situation yet, but yes, if
he just needed some IV fluids to be okay, we'd do that.
None of us wants Joshua to die from dehydration, so Dr. S
& I agreed that we would tell Joshie that we would do our
best to not have to access his port again, but there might be
a time when we need to; however, we would never access
him to do surgery again.
Before leaving the pediatrician's office, I got one more
picture of Dr. S, nurse K & Joshua together. Joshua had
*just* fallen asleep, utterly worn out from his hour of
"partying". :) As Dr. S hugged me goodbye & I thanked
her for everything, she very quietly told me, "He's had a
good life, Kate. Your family has given him a *very* good
life."
They're words I will cherish forever.
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
Written February 22, 2012 9:51pm by Kate Parker
Things with Joshua remain status quo. If I don't say
anything, you can pretty much assume everything is
okay. If it isn't, Megan, Adam or I will update right away.
Tonight, I am posting from a hotel room across the street
from the University of Oregon (go Ducks!). I'm here with
Megan, Bethany & Hannah. The two little girls each have
5 hour evaluations tomorrow with the neurodevelopmental
team from the Child Development & Rehabilitation Center
that is part of Oregon Health & Sciences University. Both
girls have the professionals who work with them (&
everyone in our family) convinced they are autistic &
Hannah also strongly displays symptoms of Reactive
Attachment Disorder. Tomorrow's evaluations will
(hopefully) provide official diagnoses & some direction for
how we'll manage the more-challenging aspects of the girls'
conditions.
Joshua is at home being cared for by his father & Adam ~
mostly Adam since Charley is working insanely-long hours
these days. I just called to see how all the kids are doing &
got to hear Joshua laughing as he was walking on the sheet
of bubble wrap that his daddy brought home from work for
the kids to pop (simple pleasures ~ gotta love 'em). Joshie
knows he'll be sleeping in Adam's bed tonight & is fine
with that for one night. He wanted to verify that I will be
home to cuggle with him tomorrow & I assured him I
would. After that, he was happy to go play with his
siblings again.
It feels really weird to not have to remember to do feeds &
meds for Joshua or to remind him to drink or to make sure
he eats. It's odd not hearing him in the background. I am
thankful that when I go home tomorrow night, I'll still be
able to do all of those things for him. I really don't want to
have a break from taking care of Joshua.... I don't want to
have a normal life if that means he is not in it.
That said, it is really nice being here with Megan & having
some time with just the 2 of us (now that the little girls are
asleep). Sometimes I forget how much fun I have with her
& it's lovely to get a reminder. :)

Written February 16, 2012 8:37pm by Kate Parker
Just a quick update here. Joshua is holding steady while we
are in Portland taking care of Bethany, who is having some
challenges. http://www.caringbridge.org/visit/bethanypark
er
Last night, a friend came to the Ronald McDonald House to
hang out for the evening & during the course of
conversation, she asked Joshua how he was & he answered,
"Good. I'm going to heaven soon." He said it as
conversationally as another 5 year old would tell an adult
they are going to McDonald's. My friend paused, looked at
me, then said something along the lines of, "Oh, okay...
that's good." Adam added to the conversation, "Yeah, but
you have to wait to be part of my wedding, right?" Joshua
looked thoughtful for a moment before answering, "Um...
maybe." That prompted me to say, "Hey, you're going to
wait for Faith before going to heaven, aren't you?" Again,
a thoughtful pause followed by, "Well... maybe. I'm not
sure."
Later, my friend noticed how stiff Joshua was while sitting
on my lap & asked him if he was going to get his back
fixed. He smiled & cheerily replied, "No. I'd like to be
able to bend my back, but I don't need to."
He has clearly accepted how things are & where they are
leading. I'm getting there, as are the other members of my
family, but it's harder for those of us who understand what
Joshua going to heaven will actually look like for
us. David, my 10 year old son who has moderate autism, is
very concrete about things & has told me several times that
yes, it will be sad when Joshua dies, but there will be
"upsides," too, and it will be okay because we know where
Joshua is going. He didn't understand why I would miss
his brother when he's in heaven when being with Jesus is
going to be so amazing & Joshua would not hurt anymore
& we will know where he is. I told him he was absolutely
right... heaven will be a much better place for Joshua than
here on earth where his body is failing him, but then I
asked him if he missed Adam while his brother was in the
Philippines. David nodded very seriously because yes, he
had missed Adam a great deal. I asked him, "Why did you
miss Adam? You knew where he was. You knew when he
was coming home & when you would see him
again." David thought about it for a minute before
answering, "Because he wasn't HERE." I made the parallel
for David, saying, "Yes, and when Joshua dies, we will
know where he is at & we will know he is happy & having
fun, but we won't know when we are going to see him
again & he won't be HERE. THAT is why I will miss
him." David got it.
Sarah, my 10 year old daughter (David's twin), asked out of
the blue one afternoon if she could talk at Joshua's
funeral. I told her she could, but asked what she wanted to
say. She answered quite earnestly, "I want to tell people
that Joshua was the happiest, funniest little brother anyone
could have. I want to make sure that people KNOW what
he was like, Mom. I want people to know how awesome he
is." I choked up, but swallowed hard & told Sarah that I
thought that would be a beautiful thing to tell people. I
want people to know how awesome Joshua is, too.
His coloring is now greyish all the time. He occasionally
chokes on his own saliva. I'm actually used to his new way
of breathing (shallow, shallow, shallow, DEEP). Basically,
things are progressing, but slowly, and he's mostly stable,
so he's as good as Joshua gets. Since I'm in Portland with a
sick Bethany, I'm grateful that God is keeping Joshie
"okay" so I don't have to boomerang between the two of
them.
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
Written February 12, 2012 6:25pm by Kate Parker
It's the little things that devastate my heart the most. It's
waking up to Joshua suddenly being unable to do
something or say something & realizing that yesterday was
the last time I was going to experience *that* thing with
him. And of course I never know when the last time is
going to be, so I try to enjoy everything he can do, but it's
just not realistic to be able to capture every single moment
every single day, which means that when the day dawns &
I realize he has lost something else, a shaft of pain slices
through my heart.
Joshua can't curl up in my lap anymore. His spinal cord
has so much scar tissue stuck to it & the surrounding
structures that he can't bend his lower back. He can lay
across my lap or sit upright, but I can't curl him into a little
ball and snuggle him like I used to. To be fair, this didn't
happen overnight. He's been getting progressively stiffer
over the past few months, but today was the day where he
couldn't curl his lower back at all anymore, which I realized
when I tried to cuddle Joshie after he woke up this
afternoon.
Another "thing" lost. And while I realize I can still cuddle
with my boy in other ways, it doesn't mitigate the sadness
that comes from knowing that the days of pulling him onto
my lap in the recliner & feeling him melt against me as we
rock are over.
I told him I know he doesn't want Dr. W to do more
surgery on his head, but does he want her to fix his back for
him, & he answered, "I don't remember how she fixes my
back. How does she do that?" I told him that she makes a
cut on his back & takes out the scar tissue and other gunk
so that he can move his back & have it not hurt & so that he
doesn't have to walk on his toes (he doesn't toe-walk 100%
of the time, but is doing it more & more to compensate for
his spinal cord being stretched). He was thoughtful for a
moment before telling all of us in the room very firmly,
"No, I don't need to bend my back."
Despite his wishes being the opposite of what I want to do,
Joshua's will be honored. This isn't my fight & whether or
not we do surgery is no longer my choice to make. I wish
it were, because that would mean Joshua didn't have an
incurable genetic condition & I could tell him, "Sorry,
kiddo, but we're doing what I think is best for you." I think
at this point, my almost-6 year old son is wiser than his
almost-42 year old mother. He seems to somehow
understand that doing surgery probably wouldn't make
much difference to the big picture ~ it wouldn't bring
oodles of improvement in his overall functioning. My
emotions & desire to keep Joshua alive sometimes makes it
very easy to rationalize trying something that I logically
know has very little chance of making a significant
difference. It then takes conscious effort on my part to
focus on that logic & not give in to what my emotions
want.
Sigh.
Not doing another tethered cord surgery will inevitably put
more downward pressure on his brain stem as Joshua's
spinal cord gets stretched. It could lead to more nerve
damage to his legs, feet, bowel & bladder as those nerves
gets pulled on (and subsequently more messed-up than they
already are), which will negatively affect the functioning of
those body parts. Writing all of this out, knowing all we
have watched Joshua lose already with regards to sensation
& function in his legs, feet, bowel & bladder over the past
almost-6 years and knowing that it will get worse if we
don't do something about it, makes me feel nauseous. The
only consolation I have is knowing we have adequate
medication to mask the pain that he would otherwise feel in
both his back & his head.
Actually, that's not entirely accurate. The only physical
consolation I have is the medication in my possession that I
can give Joshie. The spiritual consolation I have is
immense. God promises to be near to the brokenhearted
(Psalm 34:18) and I experience that promise every
day. Today, I am reading & holding on to scripture verses
that bring comfort, such as Joshua 1:9, which says, "Have I
not commanded you? Be strong & courageous. Do not be
afraid; do not be discouraged, for the Lord your God will
be with you wherever you go."
Another verse that has encouraged me is Romans 15:13,
which says "May the God of hope fill you with all joy and
peace as you trust him, so that you may overflow with hope
by the power of the Holy Spirit."
Tonight I am holding on to hope & trying to be as strong &
courageous as my little boy is despite my sadness over his
latest loss. He's so much better at this courage thing than I
am, but I'm glad he's still here for me to learn from.
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
Written February 9, 2012 9:45pm by Kate Parker
Joshua's birthday is in 22 days. He'll be 6. Six months ago,
we held a 5.5 birthday party for him because no one
thought he would make it to his 6th. If he hadn't had 3
brain surgeries in November, he wouldn't have made it to
Christmas, much less to March, 2012. But he did have
surgery and now, thankfully, we will get to celebrate
another birthday with him. It's a joyful occasion, so why
am I fighting against waves of sadness that threaten to
drown me? As I plan for this milestone & peruse party
supply websites, tears fill my eyes & burn as I refuse to let
them fall. Instead, I close my laptop & give myself a stern
talking-to: "Be happy, dang it! He's still here! Yeah, I
know, he probably isn't going to make it to 7 without more
surgery & he doesn't want more surgery, so you'd best
make this birthday one you will always remember!"
Then I let the tears fall. They're going to, anyway, so I
might as well not fight the flood.
Planning for Joshua's party has me feeling like Dr. Jekyll &
Mr. Hyde. I'm so, so, so happy that he is still alive & that
he's relatively stable. I'm thanking God that I get to plan a
party for my little boy and that I get to hear him giggle as
he claps his hands when I share some of my party ideas
with him. I'm so incredibly grateful that he is here for me
to hug & hold, to ruffle his hair & kiss his soft little cheeks.
We are having an "Under the Sea" themed party & I think it
is going to be a lot of fun for everyone. Yet even while I
smile as I order the items necessary to turn our living room
into an underwater paradise, I am so, so, so sad that the end
is coming & that as the days go by, we see signs that
Joshua is struggling more. I hurt inside when I think about
this being Joshua's last birthday celebration with our
family. I don't want him to turn 6 because it proves time is
passing & that means less time for us to spend with Joshua
physically in our midst. Maybe that sounds crazy, but I
never claimed to be sane.
I want to stop time. I don't want him to be 6 because
without more surgery to take pressure away from his brain
stem, we don't see him making it to 7, and he's made it
clear to everyone ~ his family, his pediatrician & his
neurosurgeon ~ that he does not want more surgery. How I
fight to not try to change his mind! My head understands
why he is feeling done. Logically, it doesn't make sense to
push more surgery when we know he doesn't get back to
baseline & all we'd really be doing is committing him to
more months of pain without significantly improving his
quality of life. But my heart? Oh, my heart is breaking &
wanting to do anything to keep him here with us. Yet as
soon as I write that... as soon as I think that, actually, my
logical side disagrees, saying, "You know you don't really
want to do that to him." And no, I don't. I don't want to
subject Joshie to more months of pain. What kind of
mother would want that for her child? No, I don't want to
prolong his suffering, but I don't want to give him back to
God any time soon, either. I know life will be infinitely
better for my son in heaven, in the presence of Jesus, where
there is no pain or suffering or tears (Revelation 21:4), and
I want him to experience that. I do! I just don't want to be
left behind when he goes because life without Joshua is not
a "new normal" I want to get used to. Sigh. It sucks when
what is best for your child is what is worst for you.
So... the emotional roller coaster continues. Preparing for
the birthday of your child who you know is going to die
feels awful. Showing him pictures on websites of things we
can get for his party & hearing his little squeals of
excitement is delightful. Buying birthday gifts for what
may be the last time is painful. Watching him frown
thoughtfully as he tries to convince me to tell him what
presents he'll receive is laughter-inducing. Having to think
up games that will be fun yet not exhaust him is
challenging. Telling him my ideas for games & being
rewarded with hand clapping & cheers makes my heart
melt. Agreeing to purchase a pinata for a little boy who
could barely muster the strength to hit one the last time he
swung a (plastic) bat 6 months ago makes my heart ache. It
seems that for every happy moment, there is an equally sad
counterpart. Most of the time, I focus on those happy
moments pretty easily & ignore the sad ones even though I
am aware that they're there. I try to take my cue from
Joshua, who doesn't let the difficult times in his day get
him down, but sometimes the sadness takes me in its teeth
& refuses to let go. Instead, it shakes me hard, whacks my
head against the wall or the ground a few times, and waits
until I am limp & not moving before dropping me in a
heap.
That's where I'm at right now. Lying in a heap, emotionally
broken, trying to gather the strength to get back up & not
let sadness win. Each round that we've battled, that
monster fights harder against being subdued. It whispers in
my ear that no one will understand if I try to explain how I
feel, so why should I even try? Yes, I know that anyone
who hasn't walked the path of slowly losing a child to a
disease/syndrome/condition cannot fully understand how
hard it is to not be engulfed by the pain that is lurking
everywhere. I loathe having an undercurrent of grief
flowing through every experience that I have with Joshua
& yet I can not stop it from existing. The best I can do is
ignore it & try to focus on the happy aspects of a situation,
but like I've said, I know the sadness is still there & its very
presence is isolating. I'm the only person in my circle of
friends who has a child with an irreversible, progressive,
neurologically-deteriorating condition that has no cure.
None of my friends' 5 & 6 year olds are dying (and don't
give me that, "Well, technically we are all dying... we're all
terminal," crap. While it's true, I know that none of my
friends anticipate their children dying in the next calendar
year or are actively preparing for it). It's kind of a buzzkill,
regardless of how well I imitate normal life when I'm with
others. It's why I write these crazy, all-over-the-place
emotional vents here. It's a tangible way to fight back
against the isolation & it's a way to tell the sadness to take a
hike. Others may not understand perfectly what I'm feeling,
but they care, and writing here reminds me of that, which
helps as I make preparations for Joshua's 6th birthday &
struggle to smile rather than cry.

Written February 5, 2012 3:47pm by Kate Parker
Adam is home & all is right
in Joshua's world again. Emily, David, Sarah, Isaac,
Joshua & I stood in the observatory at the airport so we
could watch the plane land & taxi in & people walk off. As
each person emerged from the plane, Joshua would say,
"Nope..... nope..... nope...." Then, when he saw his brother's
head pop up above the plane, Joshua yelled, "There he
is!" Everyone standing around us busted up laughing. It
was pretty cute.
The kids & I hustled downstairs to meet Adam as he came
through the airport revolving doors that separate the
"secure" area from people who haven't gone through
security. When Adam walked out, Joshua moved as fast as
he could to hug his big brother. Adam bent down & the
two of them greeted each other with enthusiasm. The other
kids waited for Joshie to get his hugs & kiss before
swarming Adam, too. At one point, I caught Adam's eye &
we exchanged a grin. Eventually, I was able to hug my guy
& welcome him home, too. When we got to the van, the
kids piled in & Adam offered to buckle Joshua into his
seat. Before he lifted Joshua into the car, though, he knelt
down & hugged his baby brother tight, quietly talking
about things known only to them. I snapped a picture to
capture such a sweet moment, as it epitomized (to me) the
relationship between my two sons.
For the rest of the day, Joshua stuck like glue to Adam's
side. He was tired from our adventure to the airport, but so
so so happy to have his brother home again. Later that
night, Adam was stretched out on the floor, his head
propped up against the couch, and Joshua was laying on a
pillow on top of Adam as they both watched a movie. Less
than halfway through the show, I glanced over & had my
heart melt as I saw both boys sleeping soundly. It was
cuteness overload!
Today, Joshie is happier than he's been in awhile. I think
we all are now that Adam is back home again!
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
Written February 2, 2012 1:10am by Kate Parker
We're home again. Joshua managed the trip splendidly & I
had a lovely time showing him off to his doctors, nurses,
chaplain, child life specialist & friends since most of them
rarely get to see Joshua having a good day.
We walked through Unit 36 of the Children's Hospital at
Legacy Emanuel for the very last time & I struggled to
fight off feelings of sadness as I silently voiced my
'goodbye' to a place that has been home to a thousand or
more memories of Joshua over the past almost-6
years. The new Children's Hospital opens on February
11th & Unit 36 in the "old" hospital will be renovated to
become the new adult ICU (that's what a nurse I spoke to
thought it was being converted to, anyway). I don't
anticipate Joshua spending any time in the new hospital,
either, which is a surprise since the running joke for the
past 3 years has been how the new hospital should have a
"Parker Suite" for Joshua, complete with a plaque on the
door. No one knew back then that we'd be where we're at
now. It will be weird to come to the hospital & have it be a
completely-new experience where I have to re-learn
everything. No, I don't think Joshua will be a patient there,
but I know Bethany will spend time in both PICU & on the
cardiac floor. For those who are interested, I've updated
Bethie's CB
page. http://www.caringbridge.org/visit/bethanyparker
Joshua slept from 11pm last night to 4pm this afternoon,
which made for easy travel since Bethany napped on & off
the entire way home, too. He has been happy since arriving
home & tearing off 2 more rings from the chain we made to
show how many days it would be before Adam comes
home. We get to pick him up at the airport on Saturday &
Joshua is very excited to see his big(gest) brother again. I
am so looking forward to watching the reunion between
Adam & all of his siblings, but especially between him &
Joshua ~ my camera will be very busy, for sure!
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
Written January 30, 2012 6:47pm by Kate Parker
Thanks for the supportive comments & for continued
prayers & for caring about Joshua & my family (and
me). For those who wonder, I'm not feeling overwhelmed
or numb. Joshie is still "stable" (for him) & as long as that
continues, I'm still okay, too. The conversations that we
have where he talks about dying & going to heaven are
challenging, yes, but once I get over the shock of them, I
remember that nothing has changed in the past 24 hours &
that helps me to regain my equilibrium again.
I'm currently in Portland with Joshua, Bethany & Emily for
a few days. Bethany has appointments with her
cardiologist & rheumatologist and Joshua wanted to stay
with me, so he came along. I brought Emily, too, since
she's a great helper & I will need her assistance while up
here. We'll have some fun, too, visiting a couple friends &
stopping by the hospital to say "hi" to some of Joshua's
favorite nurses & Dr. W & Dr. T.
Joshua remains about the same ~ we increased one of his
pain medication dosages & that has helped him to feel
better during his awake hours, and he's gotten used to the
change in his breathing & is maintaining his oxygen
saturation levels pretty well. When he's good, he looks
really good. When he's not good, he's really
miserable. Like I said before (I think I said it, anyway),
there's no middle ground with him anymore. It's
okay. He's still here, still smiling, still enjoying himself
most of the time he's awake, sooooooo..... I'm choosing to
focus on the positive (at least for today).

Written January 26, 2012 1:36am by Kate Parker
To continue from my last entry……..
I am always surprised when Joshua & I have the kind of
conversation we had last night on the heels of him having a
good evening. His afternoon was tough, yes, but once his
head was “only hurting an insy, binsy bit,” Joshie was
cheerful & active for the remainder of the evening. We had
friends over & they commented on how good Joshua
looked… how much better than they had expected him
to. I completely agreed with their observation. It’s exactly
what I’ve been trying to convey here ~ when things with
Joshua are good, he’s happy. He walks around, he plays
games on the computer & the Wii, he laughs with his
brothers & sisters, and in watching him, it is difficult to
believe that his brain stem is deteriorating. Conversely,
when he’s hurting, crying, groaning in pain, having trouble
breathing or laying on the floor or in my lap, it’s extremely
easy to believe that his days on the earth are coming to an
end. There really is no middle ground anymore. If he’s
good, he’s joyful. If he’s bad, he’s miserable.
Regarding our conversation last night, my approach to
talking about heaven with Joshua assures him that our
entire family will be there with him simply because he is a
little boy who has never been away from his family and, as
such, the thought of going somewhere unknown all by
himself is terrifying to him. Last year, we had a wellmeaning person say something to Joshua about how he’ll
go to heaven& be able to watch over his mommy &
brother. That completely freaked out my child. He
anxiously asked if he had to go to heaven alone. Before I
could answer, Adam had already enfolded his baby brother
in his arms & was assuring him that we have NEVER left
him alone or sent him somewhere new by himself, and that
was never going to change. Ever since then, we have
spoken of heaven as a place that the entire family is going
to. It’s not a lie. Everyone in our family who is old enough
to understand has accepted Christ as our Savior & thus has
been written into God’s Book of Life that assures salvation
& eternal life, so we will all go to heaven when we die. We
have been very careful to not lie to Joshua. We have not
told him we’re all going to heaven at the same time. What
we assure him is that he will not go alone, and since I
believe Jesus will be here to take Joshua’s hand when it is
time for him to go to heaven, that is not dishonest. We
have promised to be there with him when it’s time to go to
heaven & that is also truthful. I have heard that time in
heaven is much different than it is here on earth & that the
time difference between when Joshua arrives in heaven &
the rest of our family members arrive will seem like the
blink of an eye to those already there. I have also read (and
believe) that Joshua will have such a complete
understanding of what is happening (moreso than his
family still waiting to join him) & will be so full of joy at
being in the presence of God, it isn't going to matter that we
aren't there yet even if he IS aware that we aren't. I know
some parents talk differently about heaven & their children
are comforted by the explanation they are given& I think
that’s wonderful. Not all children are alike, however, and
as such, I believe it’s up to parents to determine how they
explain death & the afterlife to their offspring. Ultimately,
whatever makes the journey easier for a child is all that
matters (in my opinion).
I do not believe that Joshua is about to die. I don’t want
anyone to think that because of his & my conversation last
night, I think he’s going to wait until Adam gets home in
10 days and then go to be with Jesus. I just don’t think
that’s going to happen. I believe that Joshua will have to
get a lot worse before things get to the point that he dies. It
is anticipated that he will die from brain stem compression
causing him to stop breathing, & historically, we see a lot
of increasing apnea & pain as the scar tissue building up in
his head causes his cerebellum to apply more pressure
against his brain stem. Also, historically, it takes about 4-6
months after Dr. W does brain surgery for the scar tissue to
build up to a point where it begins causing Joshua
problems. Since his last surgery was in November, I kind
of don’t expect things to start getting really bad until March
or so. Yes, I realize that there is no guarantee that this is
what will happen… no assurances that we’ll get the 4-6
months followed by a few more months of sharp decline
before the end. I know that. Really, I do. It’s just the
pattern we’ve seen evolve, so I am hopeful that Joshua is
going to follow it again. At this point, he’s still having
enough “good times” that I just can’t imagine a scenario
where he would die any time soon. Hopefully, I’m correct.
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
Written January 25, 2012 1:41pm by Kate Parker
After an awful day yesterday (not Joshua-related), I was
ready to go to sleep early, but it wasn't meant to be. While
I was wanting to close my eyes & escape reality, Joshua
wanted to talk. So... we laid next to each other in the dark,
the sounds of his feeding pump rhythmically whirring &
oxygen concentrator puffing in the background, my arm
wrapped around my little boy as he curled up next to me,
and we quietly conversed. I considered getting up to write
down what we'd spoken of, but lacked the energy to do it. I
prayed, instead, that God would allow me to remember my
conversation with Joshua so I could recount it here today.
The subject didn't come out of the blue. The groundwork
for my late-night conversation was laid earlier in the day.
Joshua had spent several hours laying in my lap with his
head hurting pretty badly. I had given him a scheduled
dose of oxycodone, but 10 minutes later, he was still
miserable & wanted to cuddle & get more medicine. I gave
him 1/3 of a dose, thinking that might be enough to get him
comfortable, but when it wasn't, I gave another 1/3 of a
dose 20 minutes later, and then another 1/3 dose 20 minutes
after that. Then I just held my little guy, gently stroking his
hair & talking quietly with him while we waited for the
medication to give him relief. I asked Joshua, "When your
head hurts really badly like this, do you want Dr. W to help
you?" He thought for a moment, then answered, "No. Not
anymore." I knew what he meant, but wanted
confirmation. "You don't want to have more surgery?" He
agreed, telling me, "No." "Well, what if your head hurts
really, really badly?" He clarified, "Like if the ball is
there?" "Yes," I agreed. Another moment's pause, then, "If
it hurts a lot a lot, I want you to give me all the
medicine. All that you can." "You don't want surgery
again?" Small shake of his head. 'No." I leaned over,
kissed Joshie's forehead & told him, "Okay," then
continued stroking his hair and we drifted back into silence.
Later that evening, Emily, Joshua & I were talking about
how great heaven is going to be when we're all there & it
evolved into a shout-out of all the things Joshua will be
able to do and/or won't have to have anymore. No owies!
No port accesses! No surgery! No shunts in head or
back! Ability to run! Jump! Ride a bike! He is excited to
ride a lion, though he thinks he'll tell the lion to go slowly
so he doesn't fall off. He can't wait to talk to animals & he
told Emily that he's going to have a pet snake that will
squeeze her until she falls over & he's going to take care of
fishies in a pond. Our conversation was light-hearted &
easy. It ended as easily as it began.
When we went upstairs to go to bed, Joshua hugged me
more tightly & didn't let go for a long moment. He asked
me to wrap my arm around him, and though he makes that
request every night, I could sense something was troubling
my little boy, so as I pulled him close, I quietly asked what
was wrong. In a halting voice, he shared his heart. "I don't
want to go to heaven ever." "Why not, Joshie? Heaven
will be perfect & beautiful & you'll never hurt again." He
agreed, telling me, "I know. No more port & no tubie!"
There was a long pause, then....very quietly..."But I have to
die," said as he squeezed my arm. "Are you afraid of
dying?" Solemn nod. "Baby, I will be with you. I won't
leave you." Pause. "I will stop breathing." "Yes, but that
will just be like going to sleep. It will be okay." "But what
if it hurts?' Deep breath on my part before
answering. "Joshie, I'm not going to let you hurt. I have
lots of medicine to make sure you don't hurt. Dr. S has lots
& lots of medicine, too." "Will you give me all the
medicine?" "Oh Joshie, I will give you all the medicine
you need so you don't hurt. I don't want you to
hurt!" "And you'll stay with me?" "Oh yes. I promise." I
could feel him relax, but then he tensed again. "What about
Adam? Is Adam coming to heaven, too?" "Yes. Adam is
coming. We're all going to be there, Joshie." Big sigh,
followed by, "Okay, then I have to wait for Adam to get
here before we can go." I couldn't help myself, so I asked,
"What about Faith?" Joshua quickly answered, "Oh yeah! I
have to wait for Faith, too!" Then, settling himself under
the covers & pulling my arm more tightly against his
tummy, Joshie said with confidence, "I wait for Adam &
Faith before we can go to heaven." He turned his head &
lifted an arm to hug my neck, gave me a kiss, then rolled
onto his side while telling me, "Good night, Mommy. I
love you. Have a good sleep; I'll see you in the morning. I
love you for infinity."
It took me awhile longer to fall asleep.
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
Written January 22, 2012 2:28am by Kate Parker
A couple things have changed over the past 48 hours. I
know I should type out an actual journal entry, but it's after
midnight & I really want to get some sleep tonight, so in
the interest of brevity, here's four updates I posted about
Joshua on Facebook in the past two days to give you the
gist of what's going on:
"I had to call the pediatrician to give an update on Joshua
because he is consistently needing double his dose of
oxycodone every 4 hours. What is happening is that he
can't go 4 hours in-between doses, so he gets a rescue dose
30-45 minutes before a scheduled dose is due & then also
gets the regularly-scheduled dose. So he's getting a huge
amount of oxycodone within 30-45 minutes. It's enough to
bring his pain under control, but just the fact that he can't
go 4 hours anymore is enough of a change that I had to
report it."
"Joshua is having enough trouble breathing that he *asked*
for oxygen. What is the significance of that? He HATES
having oxygen going! Before starting it, though, he was
turning grey & his eyelids were drooping & he'd look like
he was going to fall asleep (from lack of oxygen), so he
definitely needed it. What's going on? I have absolutely no
clue. Please, please pray with me that this plus the
increased pain is not leading to anything... especially not
while Adam is in the Philippines. We want SO badly for
Joshua to be present & able to enjoy Adam & Faith's
wedding... please pray God will make that happen."
"Joshie is awake and happy, but his lips keep turning
purple/blue. I haven't hooked him up to the pulse ox
because there is nothing I can do about it if he is dropping
O2 sats (oxygen can help him feel better, but won't fix the
brain stem, so low sats will continue) & I don't want to
stress out the kids. I've spoken with one of Joshua's
specialists & she confirmed my suspicion that this is brain
stem deterioration progression. As such, we can't do
anything about it except agree that it completely sucks."
"Nothing new to report on Joshua. Megan & I have been
liberal with pain meds today & that has helped. Even
though he's had some interesting breathing episodes, he
didn't request oxygen, so we didn't give it, and he recovered
on his own just fine."
So... there ya go. Progression of symptoms. Nothing we
can do about it. Not thrilled about it. Joshua is still okay,
though, so I'm taking my cue from him & not getting too
worked up over this new stuff. As long as he's smiling &
still able to enjoy a good portion of each day, I'm satisfied,
so I make note of the new things, report them to the ped,
and go on. That doesn't mean I'm not bothered by what I'm
seeing, but when there's nothing that can be done about it,
what good does it do to spend the day stressing
out? Besides, I feel at peace right now, despite the "new
stuff". I'm focusing on what Joshua can still do & trying to
stay in the moment as much as possible. Some moments I
succeed & some I fail, but I get back up and keep going
on.

Written January 20, 2012 12:54am by Kate Parker
Joshua is stable in many ways, iffy in some, & not so great
in a couple areas. The good news is that, overall, he's still
mostly-happy, which is why it's been awhile since I
updated specifically about him. The bad news is that the
areas where he's not-so-great are troublesome.
When he talks, we watch the color of his skin go from
white to grey due to his inability to breathe & speak
simultaneously. The more he tries to talk, the more he
stutters & has to pause to search his mind for the words he
wants to say, and an increasing percentage of his words
come out sounding squeaky & high-pitched. He seems to
have lost the ability to modulate the volume of his voice,
too, which is such an odd phenomenon. He's either very
loud or very quiet, and he doesn't "clue in" to which he
should employ at any given time, which means he might
wake up a sleeping sibling with his loud, squeaky
commentary as I carry him up the stairs at night, or he
might not be heard making a request & subsequently will
become frustrated by our inattention.
More concerning to me, though, is the re-appearance of the
"ball". Yep. Joshua told me tonight that his head really
hurt because there's a ball in there again. I asked where the
ball is at & he answered, "The same place it always is," as
he touched the top of his head toward the front. I asked if it
is there all the time or only sometimes. He told me it's
there sometimes, but not always. At least the sensation is
not there all the time. That's something to be thankful for.
He's unhappy when the "ball" is present, though, and a
couple of times today, he has required extra doses of
oxycodone to bring his pain back under control.
Stupid ball.
For those keeping track, it's been 2 months + 1 week since
Joshua had the surgery (November 12th, placement of VP
shunt) that successfully eliminated the horrible "ball"
sensation from his head. Two months. Call me selfish, but
I really wanted more than that. I know, I should be
thankful that we got 2 months at all. I am, actually, but
right now, tonight, I'm sad & frustrated & angry at that
dumb ball for inhabiting my son's head, even if it is only a
sensation & not an actual object.
I know the November 3rd surgery he had (6th chiari
decompression) is still "working". While Joshie has some
signs/symptoms that indicate scar tissue is building up
again & pressing against his brain stem, he's doing pretty
well for the most part. The brain stem portion of his brain is
technically more important than where the "ball" is at with
regards to keeping him alive, so what I am hoping &
praying is that A) the medications we have will be
sufficient for keeping Joshua comfortable and B) the darn
"ball" will not become a permanent fixture that bothers him
all day long.
There are times when Joshua is happy & playful & I sit
watching him, and the thought pops into my mind that
maybe the geneticist's prediction was wrong & we'll have
Joshie around for years to come. Then, out of the blue,
he'll begin crying & hold his head, wailing that his head
huuuurrrrrtttsssss, and like a splash of icy water in my face,
I am jolted back to the reality that no matter how "good" he
may seem, he's actually very fragile & it doesn't take much
at all to upset the balance & push him from stable to
struggling. I recently had someone ask me if I had any idea
how much time Joshua might have left. I shrugged in
reply, saying only, "I'm not God, so no, I don't know." I
feel certain that if he had not had surgery in November, he
wouldn't be here now. If nothing significant changes in the
near future, then I am fairly confident we'll get to celebrate
Joshua's 6th birthday with him on March 2nd. Other than
that, I can't possibly know. It's an emotional roller coaster
that is, quite frankly, exhausting, so I don't allow myself to
dwell on thoughts about the future too much.
That is what God is teaching me right now, actually ~ to
live one day at a time & not try to live tomorrow or next
week or next month right now. Where Joshua is at,
currently, does not really allow for me to make long-term
plans, and that seems to fit into God's lesson pretty well, so
I'm slowly learning to not fight against it. There is a
freedom that comes from not having a calendar filled with
things to do & the simplicity of my family's lives right now
can be viewed as a blessing if I keep my attitude adjusted
correctly. There will come a day when we'll have the
freedom to pick up & "go", but I'm really in no rush for that
day to come. I'll gladly keep things as they are since that
means Joshua is still here for me to "cuggle" & talk to &
laugh with. I know my perspective on that will change if
my little boy starts suffering badly again, but thankfully
(sincerely ~ thank you, God!), that isn't happening today.
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
Written January 19, 2012 2:44am by Kate Parker
This isn't about Joshua, but
it's big news that I want to shout from the rooftops ~ Adam
is engaged!!! He is in the Philippines (left on Monday),
meeting his future in-laws & celebrating his bride-to-be's
birthday, and tonight, he asked Faith to marry him & she
joyfully said, "Yes!" They Skyped me to show me the ring
on her finger & to share the details of Adam's proposal,
which was very romantic & had Megan and me sighing,
"Awwwww...."
My heart is soaring with this happy news. Faith is
everything I ever asked God to provide in a wife for
Adam. She absolutely adores ALL of his siblings, too, and
loves being part of our big family, which is pretty special.
Anyway, I just had to share my joy tonight! I'm bursting
with happiness right now!
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
Written January 17, 2012 10:39pm by Kate Parker
To everyone who commented on my last entry, thank you
for your advice. I sincerely do appreciate it & I found much
of it to be helpful.
The decision that I have been thinking about involves a
situation that might not happen, but the odds are very high
that it will. Historically, Joshua has always regrown scar
tissue that blocks the flow of cerebrospinal fluid & leads to
surgery to remove the scar tissue, re-establish CSF flow &
remove the pressure against his brain stem. He never gets
back to his baseline & his pain has increased over time
despite surgery ~ especially this past year ~ but he's still
here, so surgery does buy us more time with him. What it
doesn't do, however, is stop the scar tissue from regrowing
& re-blocking the flow of CSF & increasing the pressure
against his dysfunctional brain stem, which is why I am
fairly certain that this situation will present itself again.
Last July, our neurosurgeon decided there was nothing
more she could do for Joshua (he was subsequently placed
on hospice). At the end of October, when Joshua's pain
was increasing exponentially & we were struggling to help
him and he thought he had a ball in his head, our
neurosurgeon changed her mind about doing more surgery,
saying that while she could not stop Joshua from dying, he
didn't have to die the way he was going to, in horrific pain
(if nobody did anything). She didn't know if doing surgery
would help one iota, but she wanted to try to help. Thus,
we spent the month of November in Portland. And as
everyone who reads here knows, the surgery did help. No,
it didn't return Joshua to his baseline, but it alleviated the
sensation of having a ball in his head & it chilled out his
apnea & subsequent bradycardia because once again, his
cerebellum was moved off his brain stem. We were given
more time with Joshua & we got to have him for Christmas,
which was a huge gift.
Before we left the hospital, Dr. W's Physician Assistant
told me that if there is anything more she & Dr. W can do
in the future, they would be willing to do it. And that is
what created the dilemma that I have been wrestling with.
When the time comes that Joshua gets symptomatic enough
to warrant surgery, do I take him back to Dr. W or do I say,
"No more surgery," & keep him comfortable for the
remainder of his days? When it comes time to actually
make that decision, it will rest on me & I will have to live
with whatever option I choose. And that realization has had
me twisted up in knots because I wasn't sure how I would
find peace with either decision.
Doing surgery is no guarantee of more time. He may not
even survive another surgery. The risks were higher this
past November & they won't improve when more time has
gone by & he's even more declined. And if he does
survives surgery, then what? We spend another month (or
longer) in the hospital recovering him to come home.... for
what? I'm not saying he doesn't have any quality of life
right now. He does. It's not what you would think of as
great quality of life, but he's still generally happy most of
the time when he's awake & not hurting. But since we
know he doesn't get back to baseline after surgery & he's at
a 4 out of 10 on a good day right now (1 being miserable &
10 being totally normal), would it be worth putting him
through another brain surgery to maybe get him to a 2 or 3?
On a day like today, when Joshua didn't wake up for the
day until 7pm & I've been giving him dose after dose of
oxycodone ever since he did wake up to get his headache
under control, it's hard to believe more surgery would be a
good choice for him. But if I don't put him through another
surgery when he reaches the point that he would really need
it, I will be knowingly deciding to let him die. Then I have
to live with feeling like I didn't do everything I possibly
could for Joshua, and how would I live with myself?
I have been trying to figure out answers to the questions
that swirl through my head: Do I hold on until there's no
possible chance to do anything else or do I let go before it
gets to that point? How do I know what is the best of the
two lousy choices? How do I know, really know, what is
best for Joshua? And then, how do I live with whatever
decision I make?
I know that God numbered Joshua's days before one of
them came to be, just as He did for every human being
(Psalm 139:16), which means that nothing I do is going to
give Joshua more days than God planned for him to have,
regardless of what I decide to do or not do. There is
comfort in knowing that truth. I think what is hardest about
this decision is getting my own emotions out of the way.
Right now, thankfully, I don't have to make the decision to
do surgery or to not do it, so I'm not going to try. After
wrestling with this over the past couple of weeks, what I
have decided is that I am not going to deal with it until I
have to. That pretty much goes totally against my
personality since I much prefer to have an idea of what I
will do long before I actually have to make a big decision ~
having a plan of action is what usually gives me peace of
mind ~ but with this situation, I just can't do it. So, instead,
I am going to trust that when the time comes that I have to
make a choice, I will be able to ask my Father what to do &
He will direct my steps. I am going to rest in my faith that
God will grant me peace with the decision when I have to
make it & I'm going to try to not fret about it until then. It's
a simple solution, I know, but it's the one choice I do feel
peace about, so I'm going with it.

Written January 13, 2012 9:17pm by Kate Parker
When you are faced with making a decision & there is not a
good choice either way ~ if it's a "between a rock & a hard
place" type of decision ~ how do you know what the best
option is?
Yes, there's prayer. But when God is silent, then what?
How do you know how to choose? And how to you find
peace with the decision you make?
I'm not sharing the specifics of my choice at this time
because I want some feedback that's "in general". As soon
as I share the specifics, people will tell me what their
opinions are & what they would do if it were their decision
to make, which is totally fine, but what I am seeking right
now is an answer to HOW someone makes difficult choices
when God isn't answering any prayers or providing specific
direction.
Your thoughts?
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
Written January 10, 2012 6:59pm by Kate Parker
As requested, here's a
picture of Joshua after losing tooth #7. The assumption is
that he's losing so many teeth due to osteoporosis of his
jaw. He has another loose tooth on top & the two
permanent teeth coming in (lower central incisors) are
loose, too. We've warned Joshua that he should NOT pull
those teeth out because if he does, more will not grow in.
He's very cute without teeth, but it's disconcerting to me to
see so many coming out when he's not even 6 years old
yet. None of my other kids lost teeth this early or this
quickly. I was a