English 10 Honors
Summer Assignment
Summer 2013
Welcome to English 10 Honors,
In this class you will read many works of literature, both contemporary and classic, that
will challenge you to contemplate human nature, right and wrong, and the way society
influences behavior. Additionally, you will also read non-fiction pieces that further
explicate these issues. In preparation for the year ahead, you will be reading and
analyzing My Sister’s Keeper and a series of articles entitled The Match.
My Sister’s Keeper and The Match deal with the ethical issue raised by genetically
engineered babies. Both deal with parents who choose to conceive a child to be a genetic
match for an ill child. Both explore the idea of whether or not it is morally and/or ethically
right to have a child with the intention that the child become a medical donor to a sibling.
Before you begin reading, answer the pre-reading questions. Then, read the novel. (You
must read the novel first as many of the questions you will answer as you read the article
require you to make connections to the novel.) After reading the novel, answer the literary
analysis questions. Your responses should be thorough; they should be specific and include
details and quotes from the novel to prove you have read the literature. In addition, they
should be fully developed to demonstrate your ability to analyze literature. Once you are
done with this part of the assignment, read the article. As you read, answer the questions in
the margins. At the conclusion of each section, answer the analysis question thoroughly.
After reading both the novel and the article, answer the final question.
You are expected to work independently; no part of this assignment is a group
assignment, nor should you be consulting online resources. This assignment is due on the
first day of school. Any student who does not come to class with this assignment on the first
day of class is subject to removal from the class.
During the first week of school you will be using both the novel and the article to complete
a writing assignment
Name _______________________________________________
English 10H
Summer Assignment
Pre-Reading Questions
1. Should a child be genetically engineered for a specific purpose, such as donating bone
marrow to another?
2. How might being conceived for a specific reason or objective affect a child’s future and
relationship with his or her family?
My Sister’s Keeper
After you read the novel, complete the literary analysis.
1. Characterization: For each character below, determine the character’s most significant
trait, and support this trait with one quote and two details.
Sarah’s Trait: _______________________
Brian’s Trait: __________________________
Quote:
Quote:
Detail:
Detail:
Detail:
Detail:
Jesse’s Trait: _______________________
Quote:
Kate’s Trait: __________________________
Quote:
Detail:
Detail:
Detail:
Detail:
Anna’s Trait: _______________________
Quote:
Detail:
Detail:
2. The characters in the novel experience many conflicts that impact their lives and their
relationships with each other. For each member of the Fitzgerald family, determine
each character’s most significant conflict, and fully discuss the conflict by explaining
the conflict, discussing how it affects the character, and providing a quote that reflects
the conflict.
Sarah
Brian
Jesse
Kate
Anna
3. Theme: All works of literature contain themes. Think about the novel, and determine
the most important theme in the novel. Explain this theme and support it with at least
one quote and two details.
Theme:
Quote:
Detail:
Detail:
4. Setting: Sometimes the setting of a work of literature is very important, but sometimes
the setting has very little effect on the plot. Think about the setting of the novel and
answer the questions below.
What is the setting of the novel?
HIs the setting of the novel an important aspect of the storyline? Fully discuss your
answer.
5. Narration: When an author writes, he or she must choose a narrator, and decide upon a
first or third person narrator. Jodi Picoult uses alternating first person narrators, which
is an unusual narrative technique. She uses several first person narrators—Anna,
Campbell, Sara, Brian, Jesse, and Julia—to tell the story. Through this method the
reader is able to hear the thoughts of many characters. Explore this narrative technique
by answering the questions below.
How does the reader know from whose perspective each chapter is told?
Think about each character below and explain what each character’s perspective adds
to the plot. In other words, what does the reader learn through this character’s voice
that he or she would not know had the novel been told through one first person
narrator, or a third person narrator?
Sara:
Campbell:
Anna:
Jesse:
Who is your favorite narrator? Why?
The Match
Beth Whitehouse
WITHIN HOURS of Kathleen Patricia Trebing's birth on Dec. 12, 2002, her
parents' joy turned to worry.
Note: Quotes: "Going through this, I realized you cannot judge people until you walk in
their shoes" - Stacy Trebing
Everything about the delivery at St. Catherine of Siena Medical Center in Smithtown
had been normal. Steve Trebing was convinced he was about to have another son and
was surprised when the obstetrician said the baby was a girl. The doctor immediately
handed Katie to her mom, Stacy Trebing, and Katie eagerly breast-fed.
Who are the members of the
Trebing family?
After the 7:30 a.m. delivery, an ecstatic Steve went home to Nesconset to tell the
couple's then 2-year-old son Calvin he had a sister. Stacy settled into her hospital
room to rest before family and friends arrived to see the newest Trebing.
Then worry arrived with a nurse.
"Katie's blood tests are abnormal," she said. Specifically, the baby's hemoglobin count
was low. This meant she was not getting enough oxygen into her bloodstream.
In the nursery, Katie lay under an oxygen hood, her stomach heaving as she labored
to breathe.
Stacy called Steve and told him to please rush back. Rattled, Steve arrived in the
hospital room just as the doctor said, "There's a problem."
Three months and many medical tests later, Katie's parents learned their daughter had
been born with a rare bone marrow disease called Diamond Blackfan anemia.
Approximately 30 children are born with this disease each year in the United States
and Canada.
Underline the name of
Katie’s medical condition.
Katie's bone marrow would never make the red blood cells that carry oxygen to the
body's organs, keeping them alive. Every month, Katie would need a blood transfusion
to supply her with someone else's red blood cells - or she would die.
Such transfusions carry a high cost. Month after month, year after year, iron builds up
in the liver and heart, causing the organs to deteriorate. The toll could kill Katie by her
40s.
A second treatment option, oral steroids, also poses serious side effects, including an
increased risk of infections.
There was a third option, one that could cure Katie's disease and offer her normal life:
a bone marrow transplant from a sibling who had inherited a specific portion of DNA
that exactly matched Katie's. Brother Calvin was immediately tested but was not a
match.
So doctors offered the Trebings a final suggestion. On the cutting edge of genetics and
medicine, where science raises hopes for frightened parents of ill children, was a
possible way to provide Katie with a perfect sibling match: Have another baby.
The conception of this new baby could not be left to chance, though, because the
natural odds are that only one in four of the Trebings' offspring would be an exact
match for Katie.
Stacy would have to undergo in vitro fertilization (IVF) to produce numerous embryos
Why does the third option
hold the most promise?
to choose from, increasing the odds of a match. Then there would be another step.
Scientists would pull one cell off of each embryo and use a test called preimplantation
genetic diagnosis (PGD) to find that perfect match. Only those embryos would be
implanted in Stacy's uterus.
This baby would be a "donor sibling," or, to some, a "savior sibling."
Joining the three procedures - fertilization, diagnosis and a bone-marrow transplant was first done successfully in 2000. Only 100 to 200 PGD donor children exist in the
world.
A bone-marrow transplant from this child would give Katie a greater than 90 percent
chance of being cured.
But if the process failed, Katie could die.
As with many new reproductive technologies, moral, ethical and medical questions
abound – for families and society.
"It's easy to say someone donated bone marrow or a kidney to a sibling and generally
feels pretty good about themselves. But some people think it gets a little presumptuous
to say, 'You should be born for this purpose,'" said Dr. Jeffrey Lipton, chief of pediatric
hematology/oncology and stem cell transplantation at Schneider Children's Hospital in
New Hyde Park. "This is an enormously complex ethical issue in our field. This is the
topic of the next decade, and it needs to be looked at critically."
British medical authorities approve the process on a case-by-case basis. In the United
States, there is no government oversight of such births. And no one in this country
monitors what happens to the donor sibling after the child is born.
What becomes of healthy embryos that don't match the sick sibling?
What if the sick sibling again needs help from an exact match donor in the future?
And, with parents now able to select an embryo based on DNA traits, will doctors one
day select for the tallest or smartest child?
The Trebings weighed the ethical issues.
"Going through this I realized you cannot judge people unless you walk in their shoes,"
Stacy said. "Never in a million years would I have thought that I would have IVF and
pick an embryo out as a match for my daughter."
Analysis Question
What similarities do you see between the Trebing’s situation and the Fitzgerald’s?
"There's a problem." Stacy makes a promise to her newborn
We want to make sure it's not her heart," the doctor explained when Steve returned to
the hospital. Katie needed to be moved to the neonatal intensive care unit at Stony
Brook University Medical Center immediately.
Stacy broke down and cried.
"You have to discharge me, because I'm going with her," Stacy insisted.
Stacy and Katie left in separate ambulances; Steve drove in his car. The intensive care
unit was frightening. Beeping machines. Tubes and wires everywhere. Nurses and
doctors bustling through.
The Trebings sat elbow to elbow with other parents holding vigil beside bassinets in
the NICU. Parents who spend a lot of time in the unit call it the "Nick U" for short.
Doctors quickly ruled out a heart problem. Hemoglobin, the pigment in red blood cells
that carries oxygen, continued to plunge. When hemoglobin drops, the heart pumps
harder to circulate enough oxygen through the body. That causes stress on a healthy
heart.
Katie's doctors wondered whether the obstetrician might have lifted Katie from Stacy's
body too quickly, which could have sent Katie's blood back into the umbilical cord.
Maybe that explained her problem.
To fight the dropping count, Katie needed more blood. So on her first day on Earth,
she had her first blood transfusion.
Steve pushed away thoughts his daughter was in mortal danger. For her part, Stacy
saw something good in that Katie was bigger than all the other babies in the unit. They
seemed tiny, while Katie weighed 8 pounds, 11 ounces, the biggest baby there.
How did Katie differ from the
others babies in NICU?
As she tamped down fear, Stacy made a promise to her newborn. Over the next four
and a half years, through all the hospital and doctor's visits, this promise would
become Stacy's mantra, Stacy's prayer: "Everything will be fine."
Almost two weeks after her birth, Katie came home to Nesconset, just in time for
Christmas. Everything seemed fine. In early January of 2003, a home health-care
nurse made a routine follow-up visit to the house.
"Did you take Katie for a follow-up blood test?" the nurse casually asked Stacy.
"No," Stacy said, puzzled. "Why?"
The nurse pointed to Katie's discharge papers from Stony Brook University Medical
Center.
What hadn’t Stacy been
informed she needed to do?
A scribbled note from the doctor read: "Suggest follow up CBC." The acronym referred
to "complete blood count."
The next day, Stacy took Katie to her pediatrician, Keith Ancona in Smithtown, who
sent Katie to a lab for the first of what would become weekly blood tests.
After one of those tests, Ancona called Stacy. "You have to take Katie to Stony Brook
immediately," he said. A normal hemoglobin count for a child measures between 12
and 16; Katie's had dropped to five. She needed a second blood transfusion right
away. Stacy's hope that the transfusion after Katie's birth had fixed whatever was
wrong crumpled.
"Do I really have to?" Stacy asked, crying.
Underline the sentence that
reveals how Stacy felt after
the second blood test.
"She could go into cardiac arrest," Ancona warned.
Now that her hemoglobin count was a recurring problem, Katie began regular visits to
the hospital as doctors tried to figure out what was wrong.
In the back of his mind, Richard Ancona, the father and medical partner of Keith
Ancona, suspected a rare disorder.
But until he was sure, he didn't want to alarm the Trebings. When Stacy asked, "What
do you think it is?" he would reply, "I'm not telling you because I don't want you to go
on the Internet and become a lunatic."
Do you think Dr. Ancona was
right not to tell Stacy what he
suspected?
The answer came in March, after doctors removed a piece of bone from Katie's hip.
That biopsy confirmed Richard Ancona's fear: Diamond Blackfan anemia. Two doctors
at Children's Hospital Boston, Louis Diamond and Kenneth Blackfan, documented the
disease in 1938. The Trebings learned how rare it is - probably fewer than 1,000
people in North America had it the month it was confirmed in Katie. It affects boys and
girls equally and is commonly diagnosed during a child's first year. In some cases it is
genetic, in others it's a new mutation.
The disease robs a body's ability to make red blood cells. Red blood cells are created
in bone marrow, so the disease is considered a bone-marrow failure syndrome. Red
blood cells carry oxygen from the lungs through the body. Not having enough red
blood cells is anemia - hence the name, Diamond Blackfan anemia.
In a stroke of good fortune, the doctor who manages the Diamond Blackfan Anemia
Registry of North America is based at Schneider Children's Hospital in New Hyde Park.
The Trebings signed up Katie as one of Jeffrey Lipton's patients.
The Trebings boiled down their questions to one: How do we beat this?
Considering the options
Two options treat the disease - monthly blood transfusions or oral steroids, Lipton told
the Trebings at their first appointment, which lasted for hours. Only one treatment
could cure it. Katie needed a bone marrow transplant from a sibling who had inherited
a specific portion of DNA that exactly matched hers - the portion that tells the immune
system that other cells belong and are not foreign invaders.
Katie already had started blood transfusions. Lipton told the Trebings these
transfusions would cause iron buildup in Katie's organs. That's because more iron is
deposited in Katie's body with each transfusion and it accumulates.
To combat iron buildup, within 24 months Katie would have to be hooked up five nights
a week to a pump that would release a drug called Desferal into her system as she
slept.
The pump would be connected to the body by a needle inserted into Katie's thigh or
abdomen. The drug would pick up iron and discharge it each time Katie urinated, a
process called chelation. She would have to use it for the rest of her life, or until
scientists came up with a better alternative.
Current studies showed more than 40 percent of Diamond Blackfan patients
undergoing transfusions died by their 40s, Lipton said, their internal organs worn down
and eventually wiped out by the toll of the excess iron.
Lipton wouldn't try the second option, oral steroids, which could trigger the body's
ability to produce red blood cells, until Katie was at least a year old, because they also
inhibit growth.
Only 20 percent of Diamond Blackfan patients go into extended remission without
What facts do we learn about
this disease?
needing any further treatment.
Moreover, how long such a remission could last was anyone's guess.
Even if Katie were one of those lucky ones, taking steroids would have long-term side
effects that could include weight gain, high blood pressure, increased susceptibility to
infection, glaucoma, cataracts, severe mood swings and premature osteoporosis, or
weakening of her bones. Some patients on steroids have needed joint replacement
surgery while only in their 20s.
Underline the long-term side
effects.
Another possibility
The final option was a bone marrow transplant from a sibling with exactly the same
human leukocyte antigens as Katie. These antigens are, in effect, the secret password
that tells the body's immune system not to attack.
Every cell in a human body has a DNA code on it identifying it as a member of the
club, so to speak.
If another cell appears in the body that does not bear that identical pattern, the immune
system treats it as a foreign invader.
Why is this option potentially
the best option?
That's why bone marrow transplants using exact antigen matches are the most
successful. Lipton then broached the idea that the Trebings consider having another
child - a specially selected child.
But a bone marrow transplant from that new child would be a perilous procedure for
Katie, Lipton cautioned. She would be isolated in a hospital room for at least a month
while her body worked to accept the new bone marrow. She would be susceptible to
disease for months; even a common cold could kill her. She'd be isolated even after
returning home from the hospital; she'd have to take immune-suppressing drugs for
almost a year. In the long run, she'd likely go through premature menopause and never
have biological children. But she would have a greater than 90 percent chance of
being cured.
Why would this be a
“perilous procedure” for
Katie?
And what about their new child?
Transplant from donor child
After the birth of the donor sibling, the umbilical cord is saved. At the appropriate time,
the cord blood is transplanted intravenously into the sick child to produce new, healthy
bone marrow.
In the best case scenario, the donor child isn't called upon again.
But in cases where the cord blood isn't sufficient, the new baby's bone marrow would
have to be removed from the hips and transplanted, a potentially painful procedure
performed in an operating room under general anesthesia.
Steve and Stacy worried most about whether removing a cell from an embryo would be
harmful to the child that grew from it, causing unforeseen health problems in the future.
The Trebings learned there was no way to definitively answer the question:
preimplantation genetic diagnosis was only a little more than 14 years old, so the
oldest people born from the process were younger than 18. On top of that, there was
no official database they could consult to address their concerns.
First donor child in 2000
The stacking of the three procedures - fertilization, diagnosis and then a bone marrow
transplant - was first done successfully in 2000, when a Denver boy named Adam
Nash was conceived as a match for his then 6-year-old sister, Molly. Molly had a more
dangerous bone marrow failure syndrome than Katie - Fanconi anemia - and was
close to death at the time of her transplant.
The whole concept was mind blowing to Steve. All along, the Trebings, both 33, had
What was the Trebings’
greatest fear?
wanted to have three children. But after Katie was diagnosed, they put that dream on
hold. Now that third child could - if everything came together perfectly, if one piece of
the puzzle clicked into another - cure their daughter. It felt to Steve like a gift.
Explain what is mean by, “It
felt to Steve like a gift.”
Steve and Stacy thought about it for months. Then they made their decision.
"Every child is a miracle," was the way Stacy saw it. "This child would be a miracle just
like my other two children are. The fact that this child would be a match for my
daughter is just another miracle. So we would be doubly blessed."
On each day leading up to Stacy's first attempt to get pregnant through in vitro
fertilization, Stacy injects herself in the stomach with a hormone to stimulate her
ovaries to mature far more than the normal one egg per menstrual cycle.
At the end of the month, Steve and Stacy drive to the offices of Reproductive
Specialists of New York in Mineola. There, reproductive endocrinologist James Stelling
sedates Stacy and surgically withdraws eggs from her ovary. The eggs are fertilized
with Steve's sperm.
But a glitch occurs.
Stacy's ovaries, Stelling determines, have become hyper-stimulated by the hormones
and need time to settle down before she can be impregnated.
So Stelling freezes the embryos in his laboratory and the process stalls for a month.
Katie's hospital ordeals
While the embryos lie frozen, Katie has her 20th blood transfusion at Stony Brook. Her
lips are trembling so much her binky is in danger of tumbling from her mouth. Her
brown pigtails bob up and down as she squirms in Stacy's lap, first struggling to
escape, then melting backward into her mother's chest.
At 18 months old, Katie is too young for bravery. She's afraid of what's coming. She
has a name for it: her "boo-boo."
"Let's sing 'Barbara Ann,'" Stacy suggests to the two nurses who surround Katie in the
pediatric hematology unit. They begin to warble the Beach Boys' classic.
As the singing distracts Katie, nurse Pattie Losquadro - whom Stacy has gratefully
nicknamed "one shot Pattie" - inserts a needle into the crook of Katie's right elbow.
"All done, all done," Stacy whispers to Katie.
On each drive to the hospital, Stacy and Katie pass a playground. On this day, as
Stacy saw all the children playing on the swings, she had the same thought she had on
her earlier trips: "That's where we should be, instead of heading to the hospital."
On this muggy June day, when thunderstorms are threatening, Katie settles down to
spend most of the day in the hospital. After so many visits, Katie has mastered the
secrets of a unit designed for sick children. She wriggles off Stacy's lap and walks to a
gray metal file cabinet. She pulls open the second drawer from the bottom, where she
knows there's a cache of Cheetos, Three Musketeers bars and Reese's Peanut Butter
Cups.
Katie's intravenous line is hooked to a rolling stand with a suspended bag of blood that
is pumped over several hours into her body. Stacy's challenge is to keep her daughter
- who gets more and more energetic as the new blood revitalizes her - entertained for
hours.
They play hide and seek with the nurses, Katie too young to realize that her rolling IV
stand is a giveaway. Sometimes Stacy sits Katie on the box in the middle of the IV pole
that measures the rate of blood flow, one leg on each side of the pole, and pushes her
around the hematology unit as if the IV stand is a go-cart. They meander the hallways,
What two miracles does
Stacy see in the new baby?
counting the fish in the colorful pictures on the walls.
In between transfusions, Katie seems like a healthy child. One sunny June evening
she's playing in the back yard with Calvin and the Trebing's lumbering St. Bernard,
Hobbes. The yard is adjacent to where Stacy grew up.
Stacy's grandparents bought all the land on her block in the 1950s, so now Stacy, her
parents, her two sisters and her brother all own houses next to each other. It turned
out to be a blessing to have family so close by to help baby-sit Calvin when Stacy has
to take Katie to the hospital.
Helping with family
Steve grew up on the South Shore, in North Babylon. His dad worked for NYNEX.
Seven years ago, his parents bought a house on Fire Island, in Ocean Bay Park, and
now Steve's dad is retired and Steve's parents split their time between North Babylon
and the beach house.
"Dad fishes, mom walks the beach," Steve says.
Both sides of the family will need to pitch in as the next few years unfold. Steve owns a
business that he started in 1994 putting up party tents for weddings at North Fork
wineries and political fundraisers in the Hamptons. During the peak summer season,
he all but works around the clock. Stacy worked as a physical therapist until Calvin was
born.
Steve stands in the kitchen watching Katie play with Hobbes in the yard. He cups his
hands on either side of his eyes as though wearing blinders. "We're doing it for her," he
says, looking at his daughter.
Stacy feels the same way. At the core of it all is their child. This plan might give her a
normal life.
"Although I'm not a very religious person," Stacy says, "I thought, 'Should I be doing
this? It's new. It's controversial. There are people who think it's not the right thing to
do.' Then I look at Katie."
THE DISEASE
Diamond Blackfan anemia was documented in 1938.
THE NUMBERS
There are only 100 to 200 PGD donor children in the world.
THE FIRST TIME
The stacking of the three procedures - in vitro fertilization, PGD and then a bone
marrow transplant - was first done successfully in 2000.
Analysis Question
What differences do you see in the Trebing’s thoughts as they contemplate and decide to
have a donor baby as compared to the Fitzgerald’s’?
Searching for a perfect match
At 6:15 a.m. on June 21, 2004, embryologist Wayne Caswell is riding west on the Long
Island Expressway on his Kawasaki motorcycle. At the office of Reproductive
Specialists of New York in Mineola, nine embryos are waiting for him in a petri dish the
size of the top of a soda can. These embryos were created from eggs removed from
Stacy Trebing's ovaries and fertilized with husband Steve's sperm.
At the laboratory, Caswell trades his leather jacket for blue scrubs. The hands that this
morning tossed laundry into the dryer at home will now operate on embryos so small
they can't be seen by the human eye.
Appropriately, Caswell's lab is stenciled with a playful ceiling border of sperm chasing
an egg. The nine Trebing embryos are in an incubator that resembles a hotel room
mini refrigerator. Caswell uses a tool that works like a miniature turkey baster to pick
up embryo No. 1.
He transfers it to an individual dish and places it under a microscope. Through the
lens, the eight-cell embryo looks like a soccer ball. It has a membrane, as if wrapped in
plastic wrap. Caswell shoots a low intensity laser to burn a hole in the lining. Only then
can he steal what he's after.
One cell.
Scientists know an embryo can survive the loss of one cell. During routine in vitro
fertilization, embryos are often frozen for future use. One or two cells may die in the
thawing process, but a fully formed human being can still grow. Nature also causes
some embryos to divide in two, forming identical twins.
Caswell can't talk while working - because he literally uses his breath to blow and suck
the cell off the embryo. He now uses two pipettes - one to steady the embryo and the
other to manipulate it. With his left hand holding the pipette to the embryo, the second
pipette goes in his mouth like a straw.
Extracting cell from embryo
In a laboratory filled with sophisticated equipment, Caswell uses a low-tech process
that's much like sipping a cocktail through a straw. He blows or sucks, easing the cell
off the embryo. As he does, the cell stretches like a water balloon - first round, then
oval, until it breaks free from the others and returns to a circle.
When he gets to embryo No. 4, Caswell notes its beauty: evenly sized, good
symmetry. On the other hand, embryo No. 8 is severely abnormal - it has advanced to
only two cells. Such embryos would be unlikely to survive on their own.
"I can't biopsy this embryo," Caswell says. "We didn't cause that. It's just inherent in
the egg. Many patients think you've retrieved this amount of eggs, I should have this
number of babies available. We're doing things to screen. We're doing things to select.
But we're not doing things to fix."
Of the nine embryos, Caswell is able to remove a single cell off of seven for testing.
From how many embryos is
Dr. Caswell able to remove a
cell?
"Seven's not a bad number," he says.
Finding a match for Katie
The cells are deep frozen in tubes and put into a cooler to be loaded onto a routine
flight at Kennedy Airport and flown to geneticist Mark Hughes at the Genesis Genetics
Institute in Detroit. Hughes has been preparing for the cells' arrival for weeks,
examining Steve's, Stacy's and Katie's DNA to make sure he can match the embryos
correctly. Once the cells get to him, Hughes and his team will spend the next 19 hours
performing preimplantation genetic diagnosis (PGD) to determine which of the seven
cells are an exact human leukocyte antigen match for Katie. Those antigens are a
code in the DNA that tells the body's immune system that other cells belong and are
Underline how many hours it
will take to test the cells.
not foreign invaders. Having matching antigens would allow Katie's body to accept a
sibling's bone marrow.
Two days after the embryos arrive in Detroit, Stacy is anxious, but excited. At noon,
she is scheduled to have embryos that match Katie implanted into her uterus. Stacy
had a dream last night that, of the seven embryos tested, one was viable. It was
implanted and she got pregnant with a girl.
Steve won't be going with Stacy for the implantation. It's the height of the season for
his party tent business and he's already scheduled to take a week off in July to go with
the family to Camp Sunshine on the coast of Maine. The camp is for families with
children who have life-threatening diseases, devoting a week, for instance, to leukemia
and another to Diamond Blackfan anemia.
With the emotional boost of her dream, Stacy feels the day holds promise. On Father's
Day the previous weekend, Steve's Aunt Kathy gave Stacy a candle with an angel on
it. Hoping for the best, she and Steve lit it last night. As Stacy heads to Mineola, she
knows only seven embryos were tested and the odds are one in four will be an exact
match for Katie. That's disappointing to the Trebings, because 19 eggs had been
harvested and 14 had fertilized into embryos immediately. The Trebings were
surprised to learn that in the end they only had seven from which to choose. Dr. James
Stelling, who heads the PGD division of Reproductive Specialists of New York,
explained to them that this kind of attrition is normal and it's one reason doctors
stimulate women's ovaries to mature multiple eggs in a cycle.
Underline the sentence that
reveals Stacy’s hopeful spirit.
When Stacy arrives, she learns that the results aren't complete yet. They will wait
another day.
In medical school at Stony Brook University, Stelling was one of the few people in his
class who knew he wanted to become a fertility doctor.
Before he had his own three children, he might have balked at what the Trebings are
doing. But the worry over an ill child hit home when one of his children was born with
glaucoma that threatened her vision and required 16 operations. He knows the agony
of wanting to heal your child.
"If you asked me 10 years ago if I thought it was a good idea to genetically test
embryos to see if one was a bone marrow match for a current child, I would have
considered it an ethical debate," he says. "Because you're creating life to serve a
purpose outside of just being a baby. Now that I have kids, I wouldn't debate it at all. I
would do it in a second. I would do whatever I could."
What caused Dr. Stelling to
change his mind about
genetically engineering a
baby?
Embryos tested for disease
Hughes tested the embryos for Diamond Blackfan anemia in his Detroit laboratory, and
none of them has the disease.
One of a geneticist's worst fears is to tell parents an embryo is disease free and later
find out it's not.
These results confirm Katie's disease is a spontaneous mutation, a random occurrence
that didn't come from either parent.
This meant any future children they had wouldn't have an inherited risk of Diamond
Blackfan anemia.
Hughes wanted to ensure the Trebings weren't so-called gonadal carriers, who have
the mutation in their reproductive organs instead of their DNA.
As far as the delay in getting the results of the antigen match from Detroit, Stelling's
attitude is no news is good news. But Stacy's worried.
"Will waiting another day affect the viability of the embryos?" she asks.
What do the test results
mean for the Trebings?
"Only if they start to hatch," Stelling says. This is when the embryo lining breaks open
completely so the cells can multiply more rapidly. "I'd rather it hatch in you, where it's
used to hatching."
If the embryo hatches outside the body, doctors worry about it forming twins.
The more days that pass before the embryos are implanted, the more they weaken.
What concerns do doctors
have when an embryo starts
to hatch outside of the
uterus?
After too many days, the embryos will try to attach to the petri dish, sensing it is a
uterus. Eventually, they will perish. Also, Stacy's uterus is expecting an embryo. If one
doesn't arrive, she will menstruate.
Just one is a match
The next morning, Stacy's back. Only one embryo of the seven is a match for Katie,
but it isn't one of the thriving ones.
"We're going to implant that embryo and give it a chance," Stelling says.
Caswell joins Stelling at Stacy's bedside. "It hasn't really grown," he says of the
matching embryo. "That's not great, but it has a chance."
Stacy tries to pin a number on it. "Ten percent chance?"
"Yeah," Caswell says. "It may do better in the uterus than it does in the lab. It's worth a
transfer."
Stacy's disappointed and she calls Steve, who's in the Hamptons putting up a tent for a
graduation party.
"There's only one match and it's not a good one, but they're putting it in anyway," Stacy
says, her eyes tearing.
"All we need is one," Steve says.
When Stacy is back in bed, Stelling sits down beside her. "Three embryos are growing
well today," he says. "But they're not the match. Do you want me to freeze them?"
"No," Stacy says. "Dr. Hughes talked about donating them to research."
Later, the embryos were found to have deteriorated too much to be donated to
research and had to be discarded.
In the procedure room, Stelling inserts a catheter into Stacy's uterus. Embryologist
Michael Perretti slides the embryo down it like a ball down a tube. They wait 30
seconds for it to settle.
"See that whiter spot right about there?" Stelling tells Stacy, directing her attention to
the ultrasound screen. "That's the fluid that has the embryo."
"I think I can, I think I can," Stacy chants.
It's 9 p.m. a few days later, and after Steve and Stacy put Calvin and Katie to bed,
Stacy lays out a hypodermic needle on the kitchen counter and retrieves an ice cube
from the freezer.
Steve ices her lower back below the waist to help numb the coming pain.
Stacy must now endure 10 weeks of shots to her buttocks. Steve jabs Stacy with a
long, thick needle filled with hormones to help the body nourish a pregnancy. Stacy
feels reassured that Steve plays on a dart team in East Islip. Transferrable skills, she
What is your opinion about
the Trebings decision to
donate the embryos to
research?
jokes.
In early July, the Trebings learn Stacy isn't pregnant. The weak embryo didn't take.
They would have to start all over again.
Message from a parent
Undeterred, they head to Camp Sunshine.
Because Diamond Blackfan is so rare, this will be the first time the Trebings will speak
in person to other parents who have been through the same medical and emotional
roller coaster.
Approximately 40 Diamond Blackfan anemia families from across the country attend
the camp.
While the children spend the day at supervised activities such as swimming, baseball
and arts and crafts, parents attend lectures on the latest treatment and research.
It's at one of those sessions that Stacy and Steve are handed a five-page letter written
by the mother of a 12-year-old Diamond Blackfan patient who had attended camp two
years earlier.
On the top, in capital letters, is typed: "THINK TWICE BEFORE HAVING A BONE
MARROW TRANSPLANT."
Just reading the first paragraph sickens Stacy. By the end of the letter, she's sobbing.
"Our son, Keir Zangrando, had been transfusion dependent with Diamond Blackfan
anemia since he was 5 1/2 weeks old," began Wendy Zangrando of Ohio. "He died on
Wednesday, November 19th, 2003, of complications stemming from a bone-marrow
transplant that was supposed to have cured him. He was 12 years old."
Boy's sister was a match
The letter explained Keir had been lucky enough to have an exact-match sibling - his
sister, Emma. Emma wasn't an IVF/PGD baby - the Zangrando's second and only
other child turned out to be a match for her brother.
When Keir was 10, in the summer of 2002, the Zangrandos attended Camp Sunshine.
There, doctors encouraged them to do a bone marrow transplant on Keir before he got
much older, because the younger the child, the better the odds of survival.
Keir entered Cincinnati Children's Hospital Medical Center in August, 2003, for the
transplant.
While there, he developed veno-occlusive disease, which can be caused by the
chemotherapy drug busulfan, a drug Katie also would get if she had a bone marrow
transplant.
Veno-occlusive disease causes clotting in the veins of the liver, all but shutting it down.
Another drug, defibrotide, which had yet to be approved by the federal Food and Drug
Administration, might have been able to treat the disease, but it was only available at a
small number of hospitals participating in a study of its safety and efficacy. Children's
Hospital wasn't one of them, Wendy Zangrando wrote.
While he seemed to recover, Keir quickly got an infection followed by pneumonia. He
soon became so sick that only medications were keeping him alive.
"Finally, on November 19th, we had them stop giving him epinephrine and dopamine,
the two drugs that were helping keep him alive by keeping his blood pressure normal,"
Keir's mother wrote. "We spend a lot of time second-guessing ourselves. Before all
this, Keir was very healthy and hardly ever got sick, not even a cold, so we feel what
happened to him was really radical.
"I think because DBA is so rare, and there aren't many sibling donors, there just aren't
enough DBA patients having bone-marrow transplants for there to be reliable statistics
. . . If the bone-marrow transplant had worked, we'd be telling everyone to do it. But
this is our story."
Before leaving camp, every word of the letter on their minds, Stacy and Steve make a
decision: they will continue to try for a third child who could be Katie's donor. They
could decide later whether to go through with the bone marrow transplant.
Underline the Trebing’s
decision.
In mid-August, back to square one, Stacy and Steve head to Stelling's office for
another egg retrieval.
Steve is exhausted. Days before, his company pitched tents for a $25,000-a-plate
fundraiser for presidential candidate John Kerry in the Hamptons at the home of
Darren Star, the producer of "Sex and the City." He is asleep when Stelling tells Stacy
he was able to retrieve 28 eggs. When Steve's sperm is mixed with the eggs, 23
fertilize.
The day of the biopsy of this group of embryos falls on Aug. 21. But Caswell, who was
to remove the cells for shipment to Detroit, is in the hospital with gastrointestinal
problems. And embryologist Perretti has his son's birthday party.
The embryos can't wait.
So Stelling brings in an embryologist from Maryland, who retrieves 22 cells from the 23
embryos and sends them to Hughes for testing - three times more than the first round.
Of the 22, 15 are found to be good enough to be tested as matches for Katie. Of those
15, eight are growing well enough in the lab to be implanted, if the testing in Detroit
shows they are matches.
In the end, how many
matching embryos are
implanted?
But only two match, numbers 19 and 21. Stelling implants both.
"Black jack," Steve says.
Amid all this activity, there is still Katie's health to worry about.
By now, Katie is 18 months old and she's had 23 blood transfusions.
Each one is only a temporary fix to counter the Diamond Blackfan anemia - each
transfusion depletes itself in three to four weeks.
Doctors decide to try the second Diamond Blackfan treatment option on Katie - liquid
steroids taken orally - to see whether that could spur her body to generate red blood
cells and eliminate the need for transfusions.
Very soon, side effects of the steroids cause Katie to be cranky and hungry. Dr. Jeffrey
Lipton, Katie's Diamond Blackfan doctor at Schneider Children's Hospital in New Hyde
Park, had predicted Katie would demand hot dogs at seven in the morning and
Cheerios at eight at night, and that her weight would quickly increase by 20 percent.
On top of these changes, follow-up blood tests at Stony Brook University Medical
Center show Katie's hemoglobin has changed only slightly, meaning the steroids aren't
doing much.
The doctors had hoped for what is called a reticulocyte count - or retic count - increase
of up to 4 percent. Katie's didn't even approach .05. A retic count is a way of
measuring increased production of young red blood cells.
How well do the steroids
work?
Rapid iron buildup
That news was bad enough. But another setback comes out of nowhere: iron appears
to be building up very rapidly in Katie's liver.
On earlier monitoring tests, Katie's ferritin level, a measure of the body's total iron
content, had been approximately 1,000, still not alarmingly high. Normal for someone
Katie's age is under 400. This time Katie's ferritin is 4,471. Lipton had been talking
about starting Katie on the drug Desferal, which would pull some iron out of her system
and allow her to get rid of it when she urinated, the process called chelation. He starts
Katie on the drug immediately.
On Aug. 30, a nurse comes to the Trebings' house to show them how to use the
Desferal pump, which is about the size of an eyeglass case. Katie will need to be on
the pump 10 hours a night, five days a week.
It's evening, so Steve and Stacy wake Katie. The pump's needle is inserted into her
thigh and she screams.
Looking for some measure of hope the future might be different from the present,
Stacy takes a home pregnancy test.
It responds with a very faint line.
Stacy takes Katie and older brother Calvin with her to Stelling's office for her official
pregnancy blood test.
"Did you cheat?" the nurse asks.
"Yes! Two nights ago. It was pretty faint."
"I really think it's going to be positive," the nurse says as she draws Stacy's blood.
By 11:30 a.m., Stacy can't bear the waiting anymore. She calls Stelling's office for the
results.
"We did it!" the nurse says
"Woo-hoo!" Stacy yelps. She calls Steve at his office.
"You're going to be a daddy again," she says.
But Stacy has to take a follow-up blood test in two days, to make sure the pregnancy is
progressing normally. After that test, she meets Steve and their kids at Steve's parents'
beach house on Fire Island. Steve is nervous about the test results.
Stacy tells him she doesn't know them yet. Steve heads to the beach to swim, but an
uneasy Stacy calls Stelling's office, only to be told her pregnancy hormone levels
haven't doubled as they should have.
Stacy goes out to the beach and breaks the news to Steve. This is the nightmare he's
been worrying about - that Stacy might miscarry.
"It better stay," he says. He leans down and kisses Stacy's stomach. "Come on, baby,"
he urges.
The next week, Stacy's hormones have rebounded. In fact, doctors briefly think both
embryos might have taken and produced twins. But follow-up ultrasounds show Stacy
is pregnant with one baby.
By late September, Stacy has come to hate steroids, which Katie has been taking for
six weeks. She feels she's poisoning her daughter. Calvin doesn't understand why his
sister is hitting and biting him. Stacy knows strangers see Katie's chubby face as she's
giving her daughter another ice pop, and she's certain they're thinking, "You shouldn't
be feeding this kid."
While Katie waits to see Dr. Lisa Mueller, her hematologist at Stony Brook, she's
eating chicken nuggets from McDonald's. She weighs 28 pounds, six pounds more
than she weighed five weeks ago when she began taking steroids. Normally, she
would have gained half a pound in that period. She is now in the 50th percentile in
height for her age and in the 75th percentile for weight.
"She's going to blow up," Stacy jokes, and indeed Katie looks like her skin is a dress
that's two sizes too small.
"Hey Katie bug," Mueller says as she enters the exam room. Right away, Stacy wants
to know the plan for taking Katie off steroids.
But Mueller doesn't want to wean her yet. There is still time for it to kick in, she says."I
know you don't have hope," she says. "But I still hope she'll respond." Mueller orders
Katie's blood tested again. Katie is already crying in anticipation.
Instead of her usual rendition of "Barbara Ann," Stacy sings, "Who Let the Dogs Out?"
to distract Katie from the prick of the needle.
Stacy again steers the conversation toward weaning Katie.
"I know you don't like my plan," Mueller insists. "But I think that we should try. It's only
two more weeks of suffering."
Stacy has to wait for the retic count before she and Katie can go home. When she
hears it - just .1, still practically non-existent - it's the final straw.
"What's this doing? Really? Really?" Stacy says. She is uncustomarily agitated and
belligerent. "I hate this drug. It's a terrible drug. I don't want to be six months down the
road saying we didn't really give it a shot, but I really don't think it's doing anything. I
don't care what she looks like. It's how she feels. It's all right that she looks like a
balloon. I'm sorry, I don't mean to give you a hard time. But they're not doing anything.
She's miserable."
Mueller sticks to her guns; she'd rather see Katie respond to steroids than put her life
at risk during a bone marrow transplant. She doesn't say what's in her mind: "When
Katie's lying in the hospital having a bone-marrow transplant and is potentially fighting
a life-threatening infection, I want to know I did everything I could."
Katie is taken off steroids
That night, Stacy and Steve decide to wean Katie off steroids. Feeling guilty, Stacy emails Katie's Diamond Blackfan doctor, Jeffrey Lipton, for his opinion. He e-mails her
back that in all likelihood, if Katie hasn't responded yet, she probably won't.
But now, with steroids off the table, it's either back to monthly blood transfusions - or
moving ahead to a future bone marrow transplant from the new baby.
After her next appointment at Reproductive Specialists of New York, Stacy learns from
one of Stelling's partners, Dr. Kristen Cain, that the baby is growing normally and she
can go on to her regular obstetrician for the remainder of her pregnancy. Stacy pulls
the doctor into a hug. Tears drip down her face.
"How do you thank someone for giving you a child to save your other child?" she says.
What do Stacy and Dr.
Mueller debate?
What is the Trebing’s final
decision?
Analysis Question
How does reading about the Trebing’s experience trying to conceive a child give new perspective to
what the Fitzgeralds went through?
"It's a boy!'
At 5 p.m. on May 4, 2005, Christopher Thomas Trebing - at nine pounds, one ounce,
the biggest of the three Trebing children - enters the world at St. Catherine of Siena
Medical Center in Smithtown.
"Do you want to cut the umbilical cord?" obstetrician Brian McKenna asks Steve.
"No," Steve answers, too afraid to do anything that might diminish the collection of the
cord blood.
McKenna snips it. He holds the severed cord and extracts its blood - the life force they
all hope will conquer Katie's Diamond Blackfan anemia. It fills a heavy plastic collection
bag.
"This is great!" McKenna says. "You're going to have a big bag. One of the biggest
collections I've ever seen."
The bag goes into a box lined with bubble wrap to be picked up by a medical courier
and shipped to Viacord, a storage facility in Kentucky, until the Trebings decide
whether Katie will have a bone marrow transplant.
Steve is leery about the health of his newborn son. After what he and Stacy went
through at Katie's birth, an easy delivery seems too good to be true. He wants proof
Christopher doesn't have Diamond Blackfan anemia, like his older sister. He wants
doctors to draw Christopher's blood and check it. Stacy talks him out of it.
Family time with new baby
"Prince Christopher," an elated Stacy says later of her new son. "Cal moves up to
King."
Katie, now 2 1/2, and Calvin, now 5, meet their new brother in his hospital layette.
Other members of Stacy's and Steve's extended families arrive; nurses come in and
say, "We want to see the miracle baby."
For the first few months after Christopher's birth, the Trebings focus on being a happy
family of five. Stacy feels the instant bond she'd felt with Calvin and Katie; she melts
when Christopher looks at her. Everything that came before to orchestrate
Christopher's birth, all the effort, all the medicine, all the science, all seems moot.
What difference do you see
between Stacy and Sarah?
Christopher gets so big so fast that Steve and Stacy nickname him "Bubba." He seems
to cry only when hungry and even that is more whimper than demand. There are no
nights spent pacing the hallways holding an inconsolable, wailing infant, as there were
with Calvin and Katie. Stacy fantasizes about having a fourth child.
Doctor urges transplant
Four months after Christopher's birth, Stacy and Steve take Katie to her regular
appointment with Jeffrey Lipton, her Diamond Blackfan anemia doctor at Schneider
Children's Hospital in New Hyde Park. By now, Katie's had more than 30 blood
transfusions and can't go more than a month without one; she sees Lipton every six
months to monitor her overall progress. At this visit, Lipton nudges the parents to again
focus on her treatment options. They need to make a decision about a bone marrow
transplant.
He reminds them Katie's continuing blood transfusions are only a stop-gap. A
transplant is the best choice to give her the most normal life, he says.
It's time to act.
"If you ask me who is going to be alive in six months, the child with a transplant or a
child with a transfusion, the answer would be the child with transfusions," Lipton tells
them.
"But," he adds ominously, "if you ask me who will be alive in 30 years, the likelihood
would be the child with the transplant."
He mentions a study that sobers the Trebings: only 57 percent of transfusiondependent Diamond Blackfan patients are alive at 40.
What does Dr. Lipton advise
the Trebings to do?
"If she were my granddaughter, I would encourage my son and his wife to do the
transplant," Lipton tells them.
Confronting their fears
Still, the Trebings are leaning against it. They are terrified Katie could die from
transplant complications. Of every 10 children receiving a bone marrow transplant from
a matched sibling, one child probably won't survive. On top of that, Katie's pediatrician,
Richard Ancona, is more conservative about a transplant.
"I would just leave her alone," Ancona tells Stacy at one of Katie's checkups.
"Why?" Stacy asks.
"Because I think there is going to be something else that can help her in the future,"
Ancona says.
Then there is Jack, the young son of the Trebings' friends Pete and Jen McBride of
Lake Grove.
He has leukemia and is undergoing a bone marrow transplant from a donor matched
from the general population. Stacy and Steve are learning how sick chemotherapy
makes a child. Chemo is the first round of a transplant and, in Katie's case, would
obliterate her Diamond Blackfan-tainted marrow. In the process, it also would wipe out
her immune system, making her so weak the sniffles could kill her.
Parent's letter on their mind
Steve and Stacy have been using the Camp Sunshine letter from Wendy Zangrando
as a guide in their research.
The letter could not be more blunt: Wendy Zangrando, whose son Keir died while still
in the hospital after a bone marrow transplant, warns other parents about possible
pitfalls in the transplant process. Steve has scrutinized every word in the letter, and his
Underline the odds of Katie
dying from the bone marrow
transplant.
penciled notes mark up the margins. He brings it with him to Katie's doctor
appointments.
His notations remind him to ask the doctors about getting Katie a liver biopsy to make
sure her liver can withstand the transplant protocol, something the Zangrandos regret
they didn't do with their son.
Steve makes a note to research whether the transplant hospital would have access to
the drug that fights veno-occlusive disease, which contributed to Keir Zangrando's
death. The Trebings want to be sure that whatever hospital they choose has access to
it. Schneider Children's Hospital, where Lipton practices, for instance, doesn't.
Considering the 'what-ifs'
The Trebings must decide whether to jeopardize their daughter's life to save it. They
go back and forth, back and forth. One day, they are sure they will do it. The next day,
they waiver.
Lying awake at night, Stacy wonders, "How can I put Katie through this?" But, in her
gut, it feels like the right thing.
She knows she and Steve shouldn't drag out a decision - the more time passes, the
more transfusions Katie will need and the more damaged her liver will be.
If they don't do the bone marrow transplant, what if Katie winds up needing a liver
transplant? As Stacy reasons, Katie is largely healthy now, her body strong and thus
better able to tolerate the whole ordeal.
Steve wants more information, something he can hang onto that would force him to
decide this is transplant time. Even though it would be bad, he hopes Katie's iron
counts climb higher, because that threat would make him feel he has no choice but to
proceed.
The temptation to avoid the transplant is enormous. But Steve knows that the best
success rate, Katie's best odds, are now to do the transplant.
"Do it today to save tomorrow," he urges himself.
On a blustery Veteran's Day, Stacy and Steve drive into Manhattan to meet with Farid
Boulad, associate attending pediatrician of the Bone Marrow Transplant Service at
Memorial Sloan-Kettering Cancer Center. Katie's disease is not cancer - but SloanKettering also handles non-malignant blood disorders.
The Trebings' insurance provider has given them permission to explore four locations
for Katie's possible transplant and they've already been to Schneider Children's
Hospital and Children's Hospital Boston.
They'll decide whether to visit Cincinnati Children's Hospital Medical Center, where
Keir Zangrando had his transplant, after today's meeting.
The pediatric waiting area at Sloan-Kettering mimics a theme park.
Multi-colored chairs are filled with children, many with surgical masks dotted with
pictures of Donald Duck, many of them missing their hair.
A tank is filled with tropical fish, a figure of SpongeBob on the bottom. A waist-high
wooden apple sits near the check-in counter, painted in primary colors. A playroom is
filled with toy trucks, games such as Chutes and Ladders, and tables for arts and
crafts.
Apprised of transplant risks
The Trebings are called in for their consultation with Boulad, a bear of a man, more
Teddy than Grizzly.
He launches into an overview of treatment options, which the Trebings have heard
from Lipton and know word for word.
Boulad is blunt about what Katie would face during the six-week, in-hospital portion of
the regimen:
For the first 10 days, Katie would have chemotherapy drugs to prepare her for
transplant day, which the hospital calls "Day Zero." The chemo would cause
disconcerting but short-term side effects such as Katie's hair falling out. It also could
cause more permanent problems such as infertility. The chemo could destroy her
ovaries. It also would temporarily obliterate her immune system.
What is “Day Zero”?
On Day Zero, Christopher's cord blood would be run through an intravenous line in
Katie's chest. The transplant itself would be anticlimactic for Katie; she'd be awake and
wouldn't feel anything. But if Christopher's collected cord blood wasn't sufficient
doctors would have to use Christopher's bone marrow instead. He would come into the
hospital on Day Zero. He would be put under general anesthesia and bone marrow
would be extracted from both his hips with needles. Later the same day, his marrow
itself, which looks like blood, would be dripped into Katie.
For 15 days after the transplant day, Katie would be confined to her hospital room.
Stacy and Steve could spend the day, and one parent could stay overnight. Katie
couldn't have visitors, and anyone who did enter her room, including Stacy, Steve and
hospital staff members, would have to don gowns, masks and gloves. The parent
staying overnight would sleep in them. At this stage, an infection could kill Katie.
Katie would get painful mouth sores and most likely have to be fed intravenously
because she would be too uncomfortable to eat. She could get fevers and need
antibiotics. She could have diarrhea and nausea.
A host of threats could plague Katie up until she left the hospital:
Graft rejection. Katie's body rejects her brother's marrow, even though it is an exact
match to hers.
Fatal infection.
Organ poisoning. The chemo drugs could be toxic to Katie's lungs, heart, liver or
kidneys, causing any or all to shut down.
Veno-occlusive disease, which shuts down the liver and contributed to the death of
Keir Zangrando, the Ohio boy who also had Diamond Blackfan and a transplant.
Sloan-Kettering, however, does have access to the experimental drug to help fight
veno-occlusive disease, called defibrotide, which was not available to Keir.
Katie also could develop complications such as acute graft versus host disease, in
which Christopher's bone marrow attacks Katie's body, potentially setting off a number
of health problems. These can include skin rashes, stomach problems and liver issues.
If severe, it can be fatal.
Hearing all this, Steve remains on the fence.
"He wants someone to say, 'You have to do it,'" Stacy says to Boulad.
"Nobody's going to say that," Boulad says. "I can tell you one other thing: If you go
later, the transplant is more difficult than it is now."
A catch-22. If parents wait for developments that convince them a transplant is
mandatory, those very developments make transplant more dangerous.
Keeping Katie transfusion dependent isn't a perfect option, either, Boulad reminds
them. "Transfusion is far from being 100 percent safe," he says. "We as physicians
cannot make a decision for you. We can make a recommendation, and the
Why would Steve and Stacy
need to wear masks, gowns,
and gloves?
recommendation is to go to transplant."
"When is the best time to do this?" Stacy asks.
"Between March and October," Boulad replies, adding that the hospital doesn't do
elective transplants in the winter because of respiratory viruses.
"What age would you recommend for her?" Stacy asks.
"The answer is, there is no right answer. Or there are several right answers. Definitely
less than 5 years of age. If you look at all the patients transplanted, regardless of
disease, in patients less than 5 years old, the incidence of graft versus host disease is
significantly less."
But he cautions about a child being too young, because metabolism hasn't matured,
which can make drugs more toxic.
"She's 3," Stacy says. "So it could be this year or next year."
Boulad focuses on the issue of Christopher's cord blood.
In leukemia patients, cord blood has worked more effectively than in children with
diseases such as Diamond Blackfan, Boulad says.
Katie's T-cells, which fight foreign invaders, need to be wiped out by chemo before a
transplant, Boulad explains. With umbilical cord blood, T-cells are less mature. In
theory, Katie's T-cells, though severely eroded by chemo, might still be strong enough
to overpower Christopher's cord T-cells. So Boulad might want to use Christopher's
bone marrow instead.
"How old does Christopher have to be?" Stacy asks. "He's six months."
"The youngest donor I've collected marrow from was four months," Boulad says.
"Hopefully you wouldn't have to poke him so many times?" Stacy asks.
"The kids bounce back within 12 hours," Boulad says. "They're playing tag and running
around. Adults walk around like this for two weeks." Boulad puts his hands on the back
of his hips as though they ache.
Boulad brings up one more point to consider. Like so many things before, it's jaw
dropping: Have a doctor remove one of Katie's ovaries now to freeze it for possible
future use.
The room goes silent. They are talking about life - first Katie's, then preserving a part of
her that could allow her to have a biological child. Cure one generation, save the next
one.
Boulad explains doctors would remove one laparoscopically, through the belly button,
at the same surgery when they do her pre-transplant liver biopsy.
Trebings weigh options
After the meeting, Steve and Stacy walk to the elevator, lost in thought. "We have to
ultimately both end up at 100 percent in favor of a transplant," Steve says.
"I don't know if I can get to 100 percent," Stacy says. She's at 85 now.
"Me, too," Steve says.
"I like this place a lot. I can sleep with her," Stacy says. Some other transplant units
won't allow a parent to stay overnight and that would be awful for Katie, who still
frequently climbs into bed with Stacy and Steve in the middle of the night. "Part of me
Why does Dr. Boulad suggest
freezing one of Katie’s
ovaries?
wants to just do it this March and get it done. Part of me wants to wait."
"What are you really waiting for?" Steve asks. "You're waiting for something else bad
to happen?"
"If we do it now, she won't remember it as much," Stacy says. "The longer we wait, the
more she'll remember it. Do you still want to go to Cincinnati? I don't think it's
necessary."
"I don't either," Steve says. Over the next few weeks there will be no lightning bolt
moment when the Trebings decide, "We have to do this." The pendulum merely
swings in the direction of going ahead with the transplant and stays there.
On Dec. 12, 2005, Katie and her family and friends celebrate her third birthday at The
Palace in Smithtown. The children dress as princesses and pirates and break a piñata.
Everyone sings "Happy Birthday," and Katie makes a wish in front of a candle on a
cupcake decorated with pink fluffy frosting.
New Year's e-mail
Christmas comes and goes. On New Year's Eve, while Steve and the three children
sleep and the clock nears midnight, Stacy sits at her computer to send out a New
Year's e-mail to family and friends. Her mind is made up, same for Steve, and now she
has to prepare for what lies ahead.
"Happy New Year to all," she writes, tears streaming down her face. "As you know, I
tend to downplay most things and have really not been focusing on the upcoming
months, as I wanted to enjoy the holidays. Well, the holidays are over and now it's
crunch time.
"I am anxious to speak to a psychologist. I do not know how to explain to Cal what
Katie will be going through and why Mom and Dad will be gone. I am tormented with
how to explain to Katie that she cannot go home and see her brothers, or why she will
be going through this process.
"So if you talk to us and ask us, 'How's Katie? How's everything?' we will probably say
good. And the day to day is, but internally it's really not, but we may not want to talk
about it and sometimes maybe we do.
"As it is almost midnight and 2006, I can honestly say, as much as I don't want my kids
to get older, I can't wait for 2007 and to look behind and say 'Thank you God for
watching over my family and helping us get through this difficult time.'
"And most of all for Katie to say, 'Happy New Year Mommy.' "Wishes to all for a
healthy New Year. Love, Stacy."
A few nights later, as Stacy is putting Katie to sleep, she breaks the news about the
transplant.
'No more boo-boo'
"Do you want to not have to do your boo-boo anymore?" Stacy asks Katie, referring to
the blood transfusions.
"Yes," Katie says. "No more boo-boo."
It breaks Steve's heart that Katie is so eager to get rid of the "boo-boos." It's not even
the monthly transfusions - she's up to a total of 40 now - that are the worst. It's the
nightly Desferal injections. Stacy and Steve do everything they can to make them less
painful - 30 minutes before the injection, for instance, they smear EMLA cream, a
topical anesthetic, in a big circle on Katie's thigh to numb the skin. Then, they wait until
Katie is asleep to inject her, to avoid her high anxiety.
About 50 percent of the nights, things go well. But half the time, Katie is screaming and
crying. And the process causes her painful leg cramps.
"We have to go to the hospital for a couple of days then," Stacy says.
Katie rolls over and starts crying. "Mommy, I don't want to go to the hospital," Katie
says. Stacy drops the subject.
The Trebings next meet with Dr. Kutluk Oktay at New York-Presbyterian Hospital/Weill
Cornell Medical Center about removing Katie's ovary; Oktay is a fertility specialist who
would do the freezing after a Sloan-Kettering surgeon removes the ovary. Oktay listens
as Steve and Stacy explain Katie's upcoming bone marrow transplant.
"You conceived your son for this?" Oktay asks bluntly.
"Well, we wanted . . ." Stacy begins.
"You wanted another baby, so why not?" Oktay finishes.
Explaining the procedure
He goes on to explain how the ovary would be removed, cut into strips with the eggs
still embedded inside and frozen. Females are born with all the eggs they will ever
have and they lose them with age. In a 3-year-old, one ovary probably has 500,000
eggs, Oktay explains. Even if in the freezing process Katie loses half of those, that still
leaves 250,000 eggs, which is equivalent to the fertility level of a normal 25-year-old,
Oktay says.
In the future, when Katie is ready to have children, doctors would either replace the
ovary in its normal location, or they would surgically implant it under the skin in her
forearm or abdomen and then extract eggs and fertilize them in the laboratory.
The procedure is experimental. Doctors haven't yet had a person who had her ovary
taken out at age 3 return to have it re-implanted. In fact, they've only reimplanted
ovaries in 12 women so far worldwide; three have given birth.
"This gives you hope," Oktay says.
Stacy and Steve decide to do it.
"It seems like a win-win situation," Steve says.
"It seems like you're using every piece of recent technology to your benefit," Oktay
says.
"Poor kid," Stacy says about Katie.
"Poor kid, but lucky kid," Oktay amends. "Ten years ago you could do none of this.
Cord blood. PGD. Ovarian preservation."
At 6:40 a.m. on March 8, 2006, Memorial Sloan-Kettering is quiet. The indoor pediatric
playroom isn't open yet, appointments haven't started for the day. Stacy and Steve
arrive with Katie for Katie's liver biopsy and ovary removal.
An orderly in a blue shower cap and scrubs pushes Katie's bed to the operating room
as Steve and Stacy walk alongside it. Katie is lying with the blanket up to her neck and
a stuffed animal she brought from home - Piggy - next to her.
Stacy holds Katie as the doctors administer anesthesia through an IV. Katie screams
for 15 seconds and is out.
By 10:20 a.m., while Katie lies in recovery, Oktay breezes through the door of nearby
Weill Cornell carrying her left ovary in a plastic container.
What’s your opinion about
Dr. Oktay’s statement?
Saving an ovary
He takes it to Room 405, marked "Laboratory" in red letters.
He uses a tweezer to remove the ovary from the container. It looks like a pink lima
bean. "You cannot just freeze the tissue like you put food in your freezer or the eggs
will not survive," Oktay explains as he works.
He cuts the ovary with a scalpel into tiny slivers like grains of rice.
What's important is the thinness of the slices, because a medical anti-freeze substance
must penetrate the tissue before it is frozen or ice crystals will form that damage the
eggs.
The soaked ovary pieces are placed in vials and frozen slowly over three hours. Then
they will be stored until Katie - decades from now - is ready to have children.
At the end of the month, the Trebings learn that Boulad definitely wants to use
Christopher's actual bone marrow for Katie's transplant instead of his cord blood. He
believes that will better Katie's chances.
That means Christopher will have to come into the hospital for pre-transplant blood
workups as well.
He'd already been to Sloan-Kettering once to have his blood drawn to make sure his
marrow would indeed be an exact match for Katie - and it had taken three nurses more
than an hour to get blood from him.
Because Christopher is so chubby, poking him in the arm didn't work and the nurses
had to hold him down and draw blood from his ankle as he screamed and squirmed.
But then things stall. Katie gets a common parasite doctors think she contracted while
playing in dirt in the yard. This delays the transplant for four weeks.
The delays only continue.
On April 1, Katie has strep throat. A new appointment date is set - May 1 - but on that
day Katie wakes up with a runny nose. While they wait for that to clear up, Christopher
turns 1, on May 4, 2006.
Time to go
The Trebings try again on the morning of May 15. On the drive to the Upper East Side,
Katie watches "Cinderella." She wears a light blue hat with "Katie" written on it in
purple script, decorated with butterfly and ladybug pins. Steve's Aunt Kathy gave it to
her to wear when her hair falls out.
Stacy feels it's a good sign when she notices the church on East 68th Street, across
from the hospital, is St. Catherine of Siena, the same name as the Smithtown hospital
where her children were born.
Katie pulls her American Girl suitcase into the hospital, rolling it behind her like the
hospital pro she is. The Trebings report to the ninth floor and are assigned what will be
Katie's room for the next six weeks, the room where her future will be decided.
Room 935.
THE BIRTHS
An estimated 10,000 children worldwide are thought to have been born using PGD,
but no American organization tracks these births.
What causes delays in the
transplant?
Analysis Question
Compare Sarah and Stacy. What similarities do you see between the two women? What differences
do you see?
FUNDRAISING: LOVE, SUPPORT POUR IN
On Saturday evening, March 4, 2006, every spot in the parking lot of the Moose Lodge
in Mount Sinai is filled.
"Welcome to an Evening of Hope and Inspiration for Katie Trebing," read programs on
round tables inside the lodge. Lavender balloons - Katie's favorite color - float in the
room. More than 75 baskets with donated items are ready for raffle.
Friends and family of Stacy and Steve Trebing, wearing "Show Me the Money" buttons,
sell chances for a contest to win one vacation to Ireland and another to the Caribbean.
Flower pots with "Katie" painted on them sit on tables, with a picture of Katie sticking
out of each one instead of a flower.
The Trebings have let their friends and family put together a fundraiser to help with the
expenses in their quest to cure their daughter. With Steve Trebing owning his own
business, the couple is better off financially than many families facing a health crisis.
Still, the costs are daunting.
Tallying up the expenses
To save one of their daughter's ovaries required a payment of $5,000 because the
experimental ovarian freezing and storage wasn't covered by insurance. And, with the
final tally months away, they have already spent $35,000 for the in vitro fertilization and
preimplantation genetic diagnosis (PGD) to have Christopher.
"This is really, really, really awkward for us," Stacy Trebing had said to her friends and
family at their first fundraiser organizational meeting at the end of January, held at
Stacy Trebing's sister Alesia Holewinski's home. Stacy's two sisters, Holewinski and
Leslie Giordanella, spearheaded the meeting.
"We want to let everyone know Steve and I were first against this because we have a
lovely home and a wonderful family. But as things are going by, the money is going.
The whole thing is very strange for our family to be asking for outside help."
"People get ruined even with good insurance," Pete McBride told the Trebings that
night. McBride was one of Steve's two best men at the Trebings' wedding. He has a
good sense of what they are going through, because his son, Jack, has leukemia that
required a bone marrow transplant. The McBrides held their own fundraiser a year
earlier.
People come because a child needs help, McBride assured the Trebings. If people
don't think you should be raising money, they won't come.
One of the first people to arrive at the Moose Lodge is James Stelling, the fertility
doctor who extracted Stacy's eggs and implanted Christopher's embryo into Stacy
more than 18 months before. Two nurses from Stelling's office come as well. So do
friends from Stacy's mother's motor home club, along with college buddies Steve
hasn't seen in years, and teachers from Katie's preschool.
Nearly 400 ticket stubs - at $50 each - sell quickly, raising nearly $20,000.
Rob Damers, a teacher living in Holbrook, went to college at the State University of
New York at Oswego with Steve and hasn't seen him in four years. He got an invitation
from Stacy's sister, who had taken the Trebings' address books and alerted everyone
in them.
"I really didn't know you guys were going through all this or I would've been quicker to
call," Damers says to Steve Trebing.
Throughout the night, formal programming is interspersed with DJ music. "As you can
imagine, my wife and I have a unique perspective on what Steve and Stacy are about
to endure," says McBride to the crowd. "To Steve and Stacy, thank you for allowing us
to help in Katie's fight. Please know that everyone in this room is praying for you and
for our hero, Katie."
Later, after the donated subs, bagels, salad, penne a la vodka and eggplant Parmesan
are gone and dessert is set out, members of the Trebing family speak.
Outpouring of love, support
"Thank you very much for your support of our granddaughter," says Rich Trebing,
Steve's dad, with tears streaming down his face. His wife, Kathy, stands next to him on
stage with a Home Depot apron on to collect money and raffle tickets hanging like
garland around her neck.
Stacy's friend Michelle Weinkauf of Lynbrook speaks next: "We have received
hundreds of letters. Strangers have gone out of their way to send their donations and
their prayers to Katie. We have truly felt the human spirit as it shines big."
Then the Trebings take the stage, Stacy Trebing at the microphone. "Seeing all of you
here tonight to support Katie gives us an overwhelming sense of love and security. I
can't even begin to express the gratitude we feel."
A slide show of Katie begins, to the music of Butterfly Kisses. "In my daughter's eyes, I
am a hero. I am strong and wise, I know no fear . . .," sings Martina McBride, as
pictures of Katie playing in the snow with Calvin are interspersed with Katie getting
blood transfusions.
The Trebing children are tonight home with a babysitter.
Stacy's mom, Pam Olsen, has her arm around Steve's mom. Stacy's dad, Calvin
Olsen, hovers nearby. Steve's sister, Nancy, is crying. Even Steve, who has vowed not
to break down tonight, is wiping his eyes.
The evening a financial success, the money will help pay for repeated transportation to
Memorial Sloan-Kettering Cancer Center in Manhattan, co-pays for drugs and
hospitalization, an advanced filter system for the house for the time after Katie comes
home and has to be germ-free, and maybe even enough so Katie years from now can
have PGD herself when she has her ovary replaced to ensure none of her children is
born with Diamond Blackfan anemia.
But it also was a beautiful sendoff as Steve and Stacy enter the most perilous part of
their journey to cure Katie.
THE FEE - Saving one of Katie's ovaries cost the Trebings $5,000.
Underline how much money
they raise though ticket sales.
Analysis Question
Katie’s illness brought together family, friends, and the community who rallied to help cover the great
expense of curing Katie. How does this compare to the Fitzgerald’s situation? Is it similar?
Recovery's long road
Within days of arriving home in June 2006, Stacy Trebing is alarmed when she notices
a rash traveling up Katie's belly and back.
Trips to Memorial Sloan-Kettering Cancer Center in Manhattan provide a diagnosis:
mild graft versus host disease. This means that Christopher's marrow is rattling Katie's
body, causing angry red bumps.
Katie will need oral steroids for four to six months to battle it. The hope is that the
steroids will calm Christopher's transplanted immune system so that it will stop fighting
Katie's body. But because steroids suppress the immune system, they will make Katie
more susceptible to infections and delay her return to everyday life.
The Trebings already knew they were in for a long haul at home - doctors had warned
that even under the best circumstances, the post-transplant recovery lasts up to a
year. Patients initially return to Sloan-Kettering for monitoring three times a week; this
gets reduced to once a week and then several times a month as patients improve.
While Day 100 after transplant usually is a milestone in the process, it is far from the
end.
How long does it take to fully
recover from the transplant?
Underline the milestone day.
Which means the Trebings still live connected to the hospital. Stacy rises at 5:30 a.m.
on the summer days she has to drive Katie into the city for checkups.
Coping after the transplant
Even inside the house, the Trebings continue to fear germs. Stacy's placed Purell hand
sanitizer in every room; the bottles can be seen on every windowsill, like holiday
candles. She can't order takeout, which can bring with it the threat of germs, so when
she gets home from the hospital, she still has to cook dinner. Just preparing Katie's
food is tedious - Stacy avoids cutting through a piece of fruit when peeling it, for
instance, so the knife doesn't contaminate the fruit. If Katie wants something normally
served from a communal container, such as ketchup, she eats it instead from individual
packets.
On top of this, Katie takes eight medicines, some multiple times daily. Tacrolimus to
fight graft versus host disease. Prednisone - the steroid - to do the same. Acyclovir to
prevent viruses. And so on.
She takes some medications at 9 a.m., some at 10, others at noon and still others at 5
p.m. Stacy has to keep all that straight. Steve takes the night shift, getting up to give
Katie a dose at 1 a.m.
Katie can't leave the house. She has to use paper towels, not hand towels that can
What precautions must be
taken to keep Katie safe from
germs?
harbor germs. She has her own bathroom no one else uses.
Any time a family member comes inside, shoes must be removed in the mud room and
hands sanitized.
The Trebings call cleaning their hands "bling blinging" because they bought an
automated unit that makes chiming sounds as it dispenses sanitizer. That way, as
Calvin comes in from playing, Stacy can hear whether he's cleaned his hands.
"Back up and bling bling," she'll yell from the kitchen.
Family deals with changes
Stacy's in a perpetual state of fatigue. Taking care of three children, two under age 5,
would be exhausting enough. But between keeping Katie entertained indoors, waking
up at night to give Christopher a bottle and rising at 5:30 to drive Katie into Manhattan,
rest is little more than a fantasy.
Steve is working many days from sunup to sundown supervising the pitching of tents
for weddings and parties. He's trying to make up some of the money the business lost
when he was unable to work during Katie's hospitalization.
On the way home from Sloan-Kettering after one hospital visit, Stacy thinks about a
time when she was pregnant with Christopher and Katie was in preschool. After Katie's
class, the moms would take all the kids to a nearby playground. One day, a mother
with four kids was teasing Stacy, warning her that when she had her third child and
she tried to bring all three to the playground at once, it would be hell.
"Each one will be running in a different direction and you'll have to chase them all," she
said.
That's just what Stacy fantasizes about on her drive home - to bring her three healthy
children to the playground and not worry if they are dirty or sweaty or teeming with
germs. Then, they could all pile in the car and get ice cream, not worrying about Katie
being served outside the cocoon of their house.
It's the third week of August 2006, 88 days after Katie received Christopher's bone
marrow. A blood test at Sloan-Kettering shows her body still making new red blood
cells. But her T-cells, the soldiers for fighting infection, are still far too low for Katie to
return to normal activity, just as doctors had expected they would be at this point.
When they are ready to leave the hospital, Katie makes a request.
"I want to go say goodbye to Dr. Boulad," she says to Stacy. "I want to hug him and I
want to kiss him and tell him I love him."
They find Farid Boulad, Katie's bone marrow doctor, in his office. "Thank you for
making me better," Katie says, as Boulad, with Katie on his lap, spins around in his
desk chair.
Stacy watches with a lump in her throat. Boulad has a lump in his throat as well.
Getting into swim of things
By early September, Katie is stronger, doing more outdoor things - she's been cleared
to ride a bike on the street in front of the house, for instance - but she wears a mask
and gloves.
"When I get all better, I'm going to the beach and I'm going to bring everyone," Katie
says one night.
On Halloween, Katie is allowed back into the children's playroom at Sloan-Kettering for
the first time as the hospital throws a costume party. She wears a fairy princess
costume with wings. She must also wear her surgical mask.
What is Stacy’s dream?
"You look great!" "You look wonderful!" Staff members dressed as cowgirls and Indian
princesses gloat over Katie.
Nancy Kernan, the doctor who did Christopher's marrow withdrawal and Katie's
transplant, is a witch. She hugs Katie, then phones her secretary. "I just ran into a
princess who could benefit from one of my wands that light up," she says. One is
delivered to Katie.
A magician named Magic Juan entertains. "Say 'Poof,'" he instructs. "Poof!" Katie and
the other children yell. "Don't say Poop! Who said Poop?" Magic Juan cries, indignant.
Katie's eyes crinkle, evidence of her smile behind the mask.
In December, Katie takes over questioning Boulad at a routine appointment.
"When can my dog come home?" she demands.
Boulad looks at Katie's latest blood test results in an exaggerated way, then smiles.
"She can come now."
Katie jumps out of the chair and hugs him.
"What else do you want?" Boulad asks her.
"Can I go back to school?"
"Yes," he says.
Katie hugs him again.
"What else?"
It's like Boulad has morphed into Santa and Katie's requests come tripping out.
"Can I eat grapes? Can I have strawberries?" Both had been previously banned
because they carry the risk of bacteria.
"As long as Mommy washes them well," Boulad says.
That afternoon, Stacy picks Hobbes up from her in-laws' house, where the Saint
Bernard has been for more than six months. Hobbes comes home just in time for
Katie's fourth birthday on Dec. 12. And the Trebings throw caution to the wind and take
Katie to her pre-school’s holiday party.
The Trebings have their traditional Christmas Eve family party at their house. Stacy's
dad sneaks out and comes back dressed as Santa, dropping off a sack of gifts for
Calvin, Katie and Christopher.
"It's hard to transition from, 'You can't do anything' to 'The dog can come home, you
can go back to school, and you can eat whatever you want,'" says Steve as he stands
by the fireplace.
On New Year's Eve, Stacy gets an answer to the prayer she made the previous New
Year's Eve, when Katie looks at her and says, "Happy New Year, Mommy."
But the transition Steve mentioned doesn't go smoothly.
When pre-school starts in January, Stacy brings Katie to class for the first time since
her transplant, wearing a pink "Team Strawberry" backpack with a cheerleader on it.
"Step on in, my darling," says her teacher Miss Stephanie when Katie gets to the
classroom door. "Every day I've been waiting for you." Stephanie Shlachtman shows
Katie the attendance sheet with Katie's name on it. "I can put a check now. That's so
exciting to me."
Stacy reminds the teacher that any fruit Katie eats has to be washed well. "Katie, I put
your Purell in your backpack," Stacy says to Katie as she joins the circle of children.
Two days later, Katie tells her mother she doesn't want to go to school. At circle time,
she explains, all the other kids already know the alphabet. They already have their
friends and don't want to play with her; they stare at her still patchy hair. "I want to stay
home with you," she says.
Why doesn’t Katie want to go
to school?
Katie battles infections
Then, Katie gets strep throat. A few days later, an ear infection. Stacy thinks Katie
seems extremely susceptible to illnesses, even though her immune system is fighting
back. But the sicknesses mean added medication, and Stacy wants to be done with all
of that.
"Is she ever going to be normal?" Stacy wonders. She had been naive, thinking the
bone marrow transplant would turn off all Katie's problems as neatly as a light switch.
Steve and Stacy decide to pull Katie out of school until next fall.
But if it's not school that's getting Katie sick, it's her brothers. Just as the Trebings are
ready to leave for their long-awaited Make-A-Wish Foundation trip to Disney World in
early February of this year, Christopher gets a rash. The Make-A-Wish Foundation
provides wishes to children with life-threatening diseases; most of them, including
Katie, want to go to Disney World.
Stacy takes Christopher to the pediatrician - it's Fifth Disease. And the doctor believes
Katie also has it. The viral illness is common in young children and produces a
signature red rash on the face, which can spread.
Fifth Disease is an ordinary childhood illness for a healthy child. But for an immunosuppressed child such as Katie, the virus can attack her new bone marrow. Stacy calls
Boulad; he's busy with patients so she explains what's going on to his secretary.
Stacy's at a Taco Bell drive-thru when her cell phone rings. As soon as Stacy hears
Boulad's voice, she knows it's going to be bad news.
"I would love to talk to you every day if we don't have to talk about Katie," Stacy says.
"What do you want to talk about?" Boulad asks.
"How about the Super Bowl?" Stacy suggests.
"Well, I don't know much about football," Boulad says.
"That's okay," Stacy says.
"We have to talk about the Fifth Disease," Boulad says. It can attack Katie's bone
marrow up to three weeks after exposure, and it can be life threatening. He warns
Stacy to bring Katie to Sloan-Kettering if anything at all seems amiss.
"So you know what that means?" Boulad asks.
"That I have to be walking on eggshells for two weeks?" Stacy says.
"Yes. Do you know what else that means?"
"That we can't go to Disney?"
"Yes," Boulad says.
Disney: Long-awaited trip
Stacy calls the Make-A-Wish people and they reschedule the family trip to April, the
week after Easter. Everyone is disappointed.
Why is Fifth Disease
dangerous for Katie?
The days pass without Katie getting worse. So on Monday, April 9, Katie packs her
American Girl suitcase for Florida, the same one she rolled into Sloan-Kettering nearly
a year ago. Her red blood cell counts are strong; the Fifth Disease threat is over; her
immune system is stronger than it's been since the transplant. Her hair has grown in;
it's short, but it's full. The doctors are weaning Katie off of her drugs, though it will still
take a few months until she is completely free of them.
"I need sunscreen," Katie says to Stacy as she packs.
"I've got that covered," Stacy says.
"We need diapers for Bubba," Katie says.
"I've got that covered, too," Stacy says.
Just days after they get home from Disney, Stacy gets the good news that it's time to
schedule Katie for a battery of testing that will enable her to move on to a different
doctor at Sloan-Kettering, one who will see Katie just every six months through puberty
to make sure she continues to thrive.
At Katie's ballet class the third week of April, one of the other mothers asks Stacy
about Katie's medical issues. Stacy is characteristically open about it, explaining to a
group of moms everything she and Steve went through as they watch their daughters
twirl and pli in the studio, dressed in pink tutus and bodysuits. Christopher munches a
bagel as Stacy speaks. Calvin is at school.
"She was diagnosed at birth. She had Diamond Blackfan anemia," Stacy says. "She
didn't make any red blood cells."
"Wow," says mom Tara Dickson, whose daughter, Gianna, 4, is dancing near Katie.
She explains how Katie had a bone marrow transplant last May, and how Christopher
was selected to be her donor.
"We went through IVF, two cycles, and we had him on the second cycle," Stacy
explains.
"Part of the reason you had him was to help her, in a sense?" asks Dickson.
"Yes," Stacy says. "We were going to have a third child anyway."
"That's great," Dickson says.
"We froze her ovary," Stacy continues.
"Holy cow," Dickson says.
EPILOGUE: "It's my special day."
Stacy opens a number "2" candle and Katie sticks it on the sheet cake.
"Bring Bubba!" Katie demands. Christopher, whom the family still calls by his
nickname, is in the Trebing backyard, jumping on the trampoline. "Bubba!"
A streak of boy runs through the screen door. He bounds onto the same chair with
Katie. Older brother Calvin hovers behind them. Christopher blows out the candle,
Katie kisses Christopher on the cheek and Christopher promptly sticks his finger into
the green icing and into his mouth.
It's May 5, 2007, Christopher's second birthday party. This is the shindig the Trebings
couldn't have last year when Bubba turned 1, because they were just two weeks from
Katie checking into Memorial Sloan-Kettering Cancer Center in Manhattan for her bone
marrow transplant.
"I can't believe it. It goes so fast," Steve says, taking a break from grilling hamburgers
and hot dogs to join dozens of family and friends in the singing. "It seems like
yesterday he was born, and now he's 2. We kind of lost that first year. We couldn't
have people over. This is his first birthday party."
"Bubba gets the first slice," bosses Katie. "He's the birthday boy."
Stacy hands Christopher a plate.
"Happy Birthday to you!" Katie yells.
The Trebing celebrations continue all summer.
A few days later, Katie is a guest of honor at the annual black-tie Bone Marrow
Foundation fundraising dinner in Manhattan, which raises $800,000 to help families
with medical costs. Cameras flash in a cacophony of light as paparazzi shoot Katie
posing with the evening's co-host Meredith Vieira, the evening's entertainment Rihanna
and finally Sarah Jessica Parker.
A waitress passes by serving caviar hors d'oeuvres. "Got any chicken nuggets?" Stacy
quips. At dinner, Calvin, in a tuxedo, pulls a funny shaped mushroom from his salad
plate and holds it up like a smelly sock. "Ew," he says, and Steve, also in a tux, shoots
him a warning look. At 10 p.m., Katie is asleep on Dad's lap.
In July, doctors take Katie off all medications. Boulad delivers the news: Katie's
Diamond Blackfan anemia has been cured. Katie has her first appointment with
Charles Sklar, the physician at Memorial Sloan-Kettering who monitors bone marrow
transplant recipients long term and will examine Katie periodically through puberty.
Katie will have an increased risk of some cancerous tumors and will need to have
follow-up bloodwork done to remove previously accumulated iron from her liver.
During August, the Trebings vacation at Steve's parents' Fire Island house. All five
Trebings head to the ocean, on the same stretch of sand where three years ago, Stacy
told Steve that although she was pregnant with Christopher, a blood test showed her
hormone levels were low and it was possible she was miscarrying.
Where he'd kissed her belly and urged Bubba to hang on.
Today, Steve swings Christopher through the waves, as Katie darts through the surf
shadowed by Hobbes, the family's Saint Bernard, and Calvin skimboards along the
shoreline.
What news do the Trebings
receive?
In early September, in what seems to Stacy like the final sign life might be normal,
Katie heads back to preschool. Katie's almost 5 now. Stacy has made a construction
paper chart that hangs on the refrigerator with pictures of chores Katie has to do
before she leaves - brush her teeth, get dressed, pack her snack. Katie is up at 7 the
first morning of school three weeks ago, so excited she doesn't go back to sleep even
though her program doesn't start until 10:30.
"It's my special day," Katie proclaims, all ready in a brown dress with pink polka dots, a
lavender heart barrette holding back her now grown-in hair. "We're going to do
painting, and play with Play-Doh."
"Let's check your backpack to make sure you have everything," Stacy says.
Katie sits on the kitchen floor. She sticks her head completely inside her backpack,
pulling out first her lunch box and then her school folder.
She pokes her head in again, but sees she's already taken out everything.
What’s not in Katie’s
backpack that was there last
time she returned to school?
She looks up.
"That's the end of the story, folks," she announces.
$325G PLUS
The final cost to cure Katie of her Diamond Blackfan anemia ultimately topped
$325,000.
Of that amount, the Trebings' insurance company paid approximately $164,000 for
Katie's liver biopsy and 37-day stay at Memorial Sloan-Kettering Cancer Center in
Manhattan, according to Sean Jones, pediatric financial counselor at the cancer
center. He released these numbers with the permission of the Trebing family.
The insurance company also paid approximately $86,000 for outpatient services at the
cancer center, Jones added.
Steve and Stacy Trebing paid $35,000 for the procedures that resulted in their son
Christopher's birth, and $5,000 to have their daughter Katie's ovary frozen. They also
paid $35,000 in doctor and drug co-pays and other items such as expenses going
back and forth to Sloan-Kettering, and an air filter system in their Nesconset home to
remove germs and mold that could be dangerous to Katie.
While these costs total $325,000, that amount does not include various doctors' fees,
including at Memorial Sloan-Kettering, as well as follow-up care at Stony Brook
University Medical Center.
Analysis Question
It’s hard enough for a family to deal with a potentially fatal illness without taking into consideration the
financial stress that is often associated with the treatment. What are your thoughts about how a family
should arrange to pay for such financial hardships? Should they have to pay? Explain your answer.
Post Reading Activity
After reading My Sister’s Keeper and The Match, read this portion of Beth Whitehouse’s article with deals with the
ethical issue of genetically engineered babies. Then, complete the writing assignment that follows.
POTENTIAL FOR ABUSE
Over the next few generations, the use of preimplantation genetic diagnosis (PGD) may become as common as
amniocentesis, predicted David Adamson, a California reproductive endocrinologist and president-elect of the American
Society for Reproductive Medicine.
PGD could allow scientists to screen out diseases that run in a family - such as breast cancer and Alzheimer's - to
ensure a healthy embryo, extending life spans to 90, Adamson said.
One bioethicist has coined a term for choosing the "best" embryo - procreative beneficence - suggesting that if a couple
has the ability to produce the healthiest child, they have a moral obligation to do so.
"This is a technology that's going to redefine the next 100 years. It's going to determine how babies are born, and how
we recreate ourselves," Adamson said.
Technique's use evolving
While PGD was originally meant to avoid life-threatening hereditary childhood diseases, some parents already are
choosing embryos based on diseases that could develop much later in life, such as breast cancer. PGD also is now
being used to avoid afflictions that aren't fatal, such as an eye condition that could lead to blindness, said Mark Hughes,
who does PGD testing at Genesis Genetics Institute in Detroit.
Hughes is comfortable with families trying to eliminate such diseases from their descendants. "No one understands
these diseases better than the family who has it," he said. "We can sit around a mahogany table and debate this, but this
family lives with the disease every day and knows it's serious enough to go through such extraordinary approaches to
avoid giving it to the next generation."
While doctors such as Adamson and Hughes see the good in testing embryos for the avoidance of disease, others are
chilled by what they see as potential abuse of the process. They point out that one day scientists may be able to pinpoint
genes for such non-medical traits as hair color and height. So while parents are testing for Alzheimer's or cancer genes,
they also would have the ability to test for preferred eye color or perhaps musical ability.
The science may move from guaranteeing a healthy baby free of certain diseases to customizing the child.
"Will parents try to do that? Really select a child's characteristics the way you can pick the options on a car?" asked
Thomas Murray, president of The Hastings Center in Garrison, N.Y., a research institute devoted to ethical issues in
medicine and the life sciences. "Not many. But it doesn't take many to make it an issue."
'Micro-eugenics' a concern
Parents could end up engaging in "micro-eugenics," said Stanford University physician and bioethicist William Hurlbut, a
member of George W. Bush's President's Council on Bioethics. Rather than a state-imposed program of eugenics, it
would be the parents themselves who could one by one weed out genes they consider undesirable, he said.
"Someone could easily make the argument that being short is like a disease because it may result in social
disadvantages," Hurlbut said. More complex traits, such as intelligence, will be far harder to influence because they
depend on the interaction of many genes, Hurlbut said.
Such choices disturb ethicists such as Adrienne Asch at Yeshiva University in New York, who said parents should see
children as worthwhile however they are, not as embryos to be selected into perfection.
"Ideally, and the word ideally is important here, people should be prepared to be parents of any child that could be born,"
she said.
Beyond family issues, some experts worry that as the science develops, insurance companies might move to require
testing of embryos and, based on the results, deny the future child health or life insurance because that testing showed
the child was likely to have heart disease or develop Alzheimer's.
Right now, there are no regulations or laws about how PGD can be used in the United States. Essentially, it is up to
individual doctors and hospital regulations whether they will perform PGD for non-medical reasons.
"Responsible physicians hopefully will not perform PGD for frivolous reasons," said Zev Rosenwaks, director of the
Center for Reproductive Medicine and Infertility at New York-Presbyterian/Weill Cornell Medical Center in Manhattan.
"The theoretical applications of PGD are essentially in the science fiction realm. PGD is here to alleviate pain and
suffering. If one follows that tenet, it is a relatively simple thing to follow."
Prior to PGD, families with a history of, say, Huntington's disease often did not have children for fear of passing it on,
Rosenwaks said. "Some of the things we talk about having a potentially detrimental impact might actually be quite
positive," he said of the use of PGD to single out disease. His clinic does 300 PGD cycles per year, primarily to test for
genetic and chromosomal abnormalities. He will not do embryo selection for non-medical reasons, he said.
Anver Kuliev is the secretary of the Chicago-based Preimplantation Genetic Diagnosis International Society. He works
with Yury Verlinsky in Chicago performing PGD.
"We have done more than 5,000 cases," Kuliev said. "We have never had a request to do something stupid like selecting
something unethical. Those who are talking about ethical issues, they are probably not involved in the medical
profession. We are not selecting the color of the eyes, and nobody has ever requested us to do so."
Uncharted medical territory
Many scientists support doctors being the gatekeepers for PGD usage, rather than, as in England, a regulatory panel.
"Like most of the things in medical practice, you don't have to have permission before you do anything," said John
Robertson, an ethicist at the University of Texas. The government doesn't regulate cosmetic surgery, for instance.
"People often say we need that for PGD, but why?"
For his part, Adamson said widespread use of PGD testing should be implemented carefully. "There's so much fearmongering that goes on about everything. I think the technology has a lot of potential. I think we have to implement this
very carefully, and we need a lot of social input. We don't want to throw it out because people worry about a slippery
slope."
Yet there already are uses of PGD for non-medical reasons that trouble some ethicists and scientists, such as gender
selection. Adamson said he was surprised by the results of a 2006 survey conducted by the Center for Genetics and
Public Policy at Johns Hopkins University that showed that close to half the PGD clinics that responded were offering
gender selection for non-medical reasons. It wasn't clear in the survey whether gender selection was only allowed when
embryos were already being tested for disease. Experts in the United States say that the trend in gender selection is to
choose girls.
"Frankly, I was surprised that it was that high," he said. "There appears to be some real demand for this from people."
Could the United States one day wind up in a predicament similar to China's? Recent reports from that country predict
that within 15 years, China will have 30 million more men of marrying age than women. This has come about due to the
Chinese government's restriction of only one child per family. Because the cultural preference for a male child is so
strong there, some women abort their baby if a sonogram shows it is female.
Making a case for regulation
Some experts keeping an eye on PGD developments, such as Francis Fukuyama, a professor at the Johns Hopkins
School of Advanced International Studies in Washington, D.C., call for a new arm of government to oversee reproductive
developments and breakthroughs.
"We need a mechanism for determining the moral acceptability of new biomedical technologies that really reflects an
informed, democratic discussion," said Fukuyama, a former member of the President's Council on Bioethics. "The
scientists by themselves are not in a position to make those kinds of judgments."
He's under no illusion that that will happen soon. "What it's going to take is some accident or some cloning experiment
that goes wrong for people to sit up and say, 'My God, I didn't know we could do these kinds of things,'" he said. "That's
how regulation institutions have been created in this country, through some kind of crisis or accident."
Sean Tipton, spokesman for the American Society for Reproductive Medicine, called the idea of a new arm of
government to regulate reproductive technologies a fantasy.
"Americans tend not to want to have government making the decision about who gets to have kids and how and why,"
he said. "We think these decisions are best left up to the individuals."
Erik Parens, a senior research scholar at The Hastings Center, said he worries about "genetic privilege."
"It strikes me as implausible that we're going to get from today, where 47 million people in the United States are without
health care, to a world where everybody has access to PGD," Parens said. "There's no doubt in my mind that in 100
years, people who already are privileged will have the privilege of using technologies like PGD."
Parens believes some sort of regulatory body is in order, to determine what is acceptable to do to an embryo and what is
not. But he said that few politicians would want to tackle it.
"As soon as you talk about doing things with embryos, you're immediately sucked into the abortion debate," Parens said.
"It is a shame that because of the passion on the two sides of the abortion issue, we don't have an opportunity to have
an open and clear debate about the difference between what we take to be reasonable things to do to embryos and what
we take to be unreasonable things to do to embryos."
Responsible use urged
Marcy Darnovsky, the associate director of the Center for Genetics and Society, a public interest organization that
advocates responsible use of genetic technology based in Oakland, Calif., said that, left unregulated, the fertility industry
could begin to push PGD aggressively for marketing reasons.
"It's uncomfortable to think of anything related to a child and reproduction as an industry, but it has become a multi-billion
dollar technology," she said of IVF in all its uses. Half jokingly, she said doctors may begin to advertise, with slogans like:
"We give you an 82 percent chance of scoring 100 points higher on your SATs."
"The dangers are that under the pressure of marketing, parents will feel we have to do it to give our kids the best start in
life," she said. "Then you set up this vicious cycle where people are seeking the perfect child. We lose a lot of what it
means to be human in that and head toward a world of genetic castes."
For Adamson, the future is not frightening.
"Everything in life is a cost benefit analysis. I think we have to be confident in ourselves as a people and as a nation, that
we will face these things. Let's weed the bad out as we come to it. We're not going to stop the future, and we're not going
to stop the technology."
Is it ethical to create a genetically engineered baby? In developing your response, consider the reading you’ve
done and the thoughts you’ve had while reading.