Requiem
I
He was born on Valentine’s Day and is convinced that is why everybody loves him so
much.
He must memorize a scripture verse for Sunday school and chooses the 100th psalm as his
favorite: “Make a joyful noise unto the Lord, all ye lands.” His favorite Christmas song is
“Hamsters Roasting on an Open Fire.”
Before he goes to bed at night, he lays his clothes out in the exact position he is going to
wear them the next day, hat to shoes, so that it looks like a deflated little boy is lying on the floor
in his room.
He wants to be a teacher when he grows up so that he can farm in the summertime.
When we come to a stoplight he says, “Red means stop, green means go, yellow means
go a little faster!”
When a classmate of his cries because she breaks a crayon, he says, “Hey! Now you have
two!”
He has an infectious giggle and he fills a room when he enters it.
He has white blonde hair, big brown eyes and shiny black eyelashes that go on forever.
He is my Alex.
II
He attends an April Fool’s Day party at Skateland, the local roller rink, and later in the
evening he complains about sore ribs and a stomach ache. He says he’s fallen down a few times
while skating and I know he’s eaten a bunch of junk food at the party. I look at his abdomen but
I don’t see any bruises. I give him some Tylenol, read him a story, say his prayers with him,
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give him a kiss and a hug, and tuck him in with the evening’s song, “Good night and God bless
you. I’ll see you in the morning.” He awakens in the night with bad dreams about wolves
circling his bed, snarling and growling.
When he still complains the next day, I take him to the doctor, who suggests I give him
some Milk of Magnesia for his stomach ache. The following day I call the doctor and laugh
when I say that the Milk of Magnesia seems to have done the trick, and that I don’t know what
he’s eaten, but he had a bowel movement that looks like a corkscrew. The doctor doesn’t laugh.
He gets very quiet and says to bring Alex in. When we get to the office, things quickly become
surreal and scary. The doctor takes out a tape measure and stretches it across Alex’s belly. The
next thing I know, we are in the Radiology Department at the local hospital.
When we find the tumor, it is the size of a grapefruit. Because it has grown outward from
the spine, it isn’t visible in its early stages. So now we have a mission. Our pediatrician sends
us to Duke University Hospital to be seen by the oncology staff. Alex is examined by a team of
surgeons and interns who tell us that before anything else can be done, the tumor must go. His
operation is scheduled right away.
The tumor is removed, but because it is so large and not encapsulated, it “spills” during
surgery, leaving remnants that must be cleaned up with chemotherapy and radiation. In
addition, further tests show that the tumor has metastasized into the marrow. The head surgeon
cannot look me in the eye when he says the picture is bleak.
The tumor is identified as Stage IV Neuroblastoma. Alex and I look up the word
together. We learn that NEURO means NERVE, BLAST means IMMATURE, and OMA means
MALIGNANT. Alex thinks that Stage IV means “I – Vee”, as in intravenous. I know that Stage
IV is bad news. Neuroblastoma is characteristically a tumor of infancy. Alex has just turned six
2
years old. More than anything, Duke’s pediatric medical community is surprised that he is still
alive. He is given a 5% chance to live if he undergoes treatment.
He wants to live. He drinks the obligatory toxic cocktails, endures being tethered to IV
poles, feels sick, feels tired, feels scared. He is on a three-pronged rotation of drugs. For one of
the treatments, he goes to the outpatient clinic, where he lounges in a Lazy Boy recliner. The
other two drugs are caustic and have the potential to burn his bladder, so he must be hydrated
during their administration. He receives these drugs in the hospital for three days at a time two
weeks of the month.
He is a cheerful presence on the pediatric floor when he is “in-house” at
Duke. He forces himself to get up and walk the halls, using his IV pole for balance. He goes
from room to room visiting his new buddies. He goes to the playroom and works on the Lego
table to pass the time. He wants to be home, though. He misses his brother. His father never
visits, and he asks me why. I know his father cannot cope. I am unable to explain what I do not
understand. I tell him that I am the lucky one because I can be with him all of the time.
He puts his own stamp on cancer, taking ownership of his disease. He loves school, so he
climbs onto the bus every day between chemotherapy treatments when his counts are up and he
is less susceptible to infection. When he begins to lose his hair, he checks under the pillow in the
morning to see if the Hair Fairy has come in the middle of the night. As he gets skinnier and
balder, he takes particular delight in his radical appearance, making weird faces, enjoying the
shocking effects that he creates. He especially likes casually removing his engineer’s hat and
acting horrified to see it full of hair, his mouth a perfect “O.” Then when his audience reacts, he
shrieks, “Psyche!” I teach him to write in cursive because he insists on signing every consent
form that the doctors and hospitals produce. Mostly, he wants to be in control of his life.
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After nine months of treatment, blood work and bone marrow samples show no cancer
cells, but an MRI shows a spot on his spine. I have to tell him that if what we see in the scan is
tumor and has to be removed, the chances are good that he will never walk again. He thinks for
a moment, puts his bony hand on his chin and says, “Well, Mom, I don’t mind being in a
wheelchair, but I do mind dying.” He beats back death with a sword of hope, such a faithful,
happy warrior.
The spot turns out to be a shadow on the X-ray film, and not tumor, so he has a chance to
fight. His doctors tell us that Neuroblastoma is an aggressive cancer and is certain to return. The
only possibility for survival is to have a bone marrow transplant while he is in remission. Time
is of the essence. If we can find a donor, he will be eligible for the protocol that the University
of Florida at Gainesville is piloting at its teaching hospital. There is an available bed in the unit.
It is our choice. Choice? What choice is there? His father, his brother, and I are tested for donor
eligibility. His brother is a perfect match, a statistical rarity. I bring my boys together and tell
them that one has the chance to save the life of the other. The donor procedure isn’t risky, but it
is painful. Matthew doesn’t hesitate to volunteer. He says, with the certainty only a nine year
old can feel, “Gosh, Mom. Why wouldn’t I?” Thus, as they say, begins our longest journey
together. We decide to take the train.
III
Amtrak’s Carolinian pulls out of the station in Raleigh on a chilly dusk in early January.
We move into our sleeper car, unpacking books, stuffed animals, toys, and snacks. As the train
makes its way southward, we feel the excitement of an adventure tinged with fear. This is our
only hope. We have done everything that the protocol prescribes: surgery, chemotherapy,
radiation, climbing on to a roller coaster that you don’t have to be “this tall” to ride. Dusk turns
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into purple twilight. I can see into the windows of the houses we pass in the small sleepy towns
– families having dinner, watching TV, doing chores – and I feel homesick and alone. We go to
the dining car, and the absurd vision of Lucy Ricardo pulling the emergency stop cable on
another long-ago train in an I Love Lucy episode pops into my head. Fred Mertz is covered in
mashed potatoes. I long to find something, anything, funny. I cannot remember the last time I
have laughed.
After dinner, we return to our sleeper car to settle in for the night. The boys go to the
bathroom to pee, wash faces and brush teeth. They put on their pajamas and call dibs on the
upper berth. I sleep on the lower bunk.
I am privy to the quiet confidences between brothers.
“Hey, Al?” Matthew asks. “Are you scared?”
“Yeah, I guess. Are you?”
“Nah. I mean, they’re going to put me to sleep, and when I wake up, I can eat everything
I want and watch TV in bed. I can never do that at home, man!”
“Yeah,” Alex replies. “Matt?” he says after a moment. “Thanks for being my brother.”
“What else would I be, dork-face?” Matthew answers.
Alex takes his teddy bear by the arm and smacks Matthew in the face with it. “Psyche!”
he screams. “Monkey-butt!”
They wrestle and tickle each other until I tell them to settle down. Tomorrow is going to
be a big day.
I listen to the rustling sounds of sheets and blankets, see the impression of an elbow here,
a knee there, in the mattress above my head as they shift into positions for sleep. I am so in love
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with my sons. Their candor moves me. I am humbled by their fear, exalted by their courage.
We drift into sleep.
Some time later I am awakened by the awareness of their presence. The boys have
climbed down into my bunk, Alex snuggling under my right arm, Matthew under my left. I kiss
one on the temple, the other on the forehead. I surrender to the rhythmic rocking of the train as it
speeds inexorably toward our destination.
IV
The train arrives at the station in Gainesville, Florida at dawn the next day. We head
straight for Shands Hospital to admit Alex and Matthew to their respective rooms: Alex to the
Bone Marrow Unit, Matthew to pediatric surgery. They are on different floors, in different
wings. Where am I to go? Who needs me more? We are to discover that this final phase will
be unlike any other we have experienced so far. On Alex’s chart a medical student has written
the acronymic code, FLKWNBSIV - T, which I learn is teaching hospital short-hand for “Funny
Looking Kid With Neuroblastoma Stage IV - Terminal.” His wall chart lists him as A+. I think
that is because his teacher from Elon Elementary has transferred a grade of excellence from his
progress back home to his hospital tutor. A+ is his blood type.
V
Before Alex can accept his brother’s harvested marrow, his own immune system must be
destroyed. He receives massive doses of radiation and is placed in his hepa-filtered environment.
He gargles antiseptic as a preventive measure against saliva borne infections and his mouth fills
with painful sores. All of his books, toys, and stuffed animals must go through the autoclave for
disinfection. There is the disturbing possibility that his eyes have been insufficiently shielded
6
from the radiation and that he might become blind. An optical team is scheduled to visit him
later for evaluation. I begin to feel the anger rise. Do dead children need to see?
His brother’s marrow is irradiated and transfused into him. We wait. We know the odds,
but this is the chance we have been waiting for. He has spent the past year in and out of
hospitals and clinics, a year of indescribable suffering, a year of hope-filled experiments, a year
of isolation, of lab reports, more scans, new drugs, a year of last resorts.
Through it all, Alex has found the strength and humor he needs to survive, but the
transplant kicks his ass. He is down to 40 lbs., anti-inflammatory steroids bloating his frail body,
skin stretched tightly across his bones, his sweet face pulled into a death-grimace across teeth
that are too large for his sore, shrunken mouth. The drugs, procedures, tests, and pain are taking
their toll and for the first time I see Alex lose his optimism. At the end of January, his
classmates make a video and send it to him at Shands. It is a broadcast of WALX TV, giving
him all the news of Elon Elementary School, complete with 6 year old news anchors, a weather
girl, and a sports report. He turns his head away, refusing to watch it, telling me to turn it off. It
is the only time I see him cry since he has been diagnosed. He says he feels like a liar because
he told his friends he’d be back in school in the fall and he doesn’t think he is going to make it.
It is then that I understand what Gilda Radner means when she says that dying makes her feel
like a fraud.
I tell him how sorry I am. He says, “This could happen to anyone, Mom. It just
happened to happen to me. It’s not your fault.” I tell him that isn’t what I mean. I mean that I
am sorry because he will never drive a car, or kiss a girl, or teach, or have a garden, or be a dad.
He says that is OK because he has me.
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On Valentine’s Day, we quietly celebrate Alex’s 7th birthday with lots of hearts and
strawberry ice cream, his favorite treat. Tests show that his new bone marrow has begun to grow
healthy cells. We watch and we wait.
At the middle of March we are released from Shands to return home to North Carolina
for follow-up treatment at Duke. Alex has packed some “going home” clothes to wear after the
transplant. I dress him in his Hawaiian shirt, matching shorts, and new sneakers that never touch
the ground.
We return home and prepare the house for his care. His room must be stripped of
everything that can harbor irritants and germs. We remove his carpeting, curtains, plants, and
gerbils. He is on the hospital’s schedule of meds every four hours around the clock. We settle
into our routine of homebound school, reading books, watching TV, and reporting to Duke on a
weekly basis for post-transplant checkups. He is quiet and calm. He is home.
On a cool morning in April, I enter his room to start the day’s regime. He has one eye
open, one eye closed. He is lying in excrement. I cannot process what I see. I call his doctor
who tells me it sounds as if he has had a stroke, most likely brought on by a very low blood
count. Get him to the ER, she tells me. Right away. I clean him up, change his pajamas, wrap
him in his quilt, grab his pillow, bundle him into my arms and take him downstairs. I gently lay
him behind the front seat in the hatchback of the car.
We arrive at the emergency room
and his doctor is paged. She runs down the hallway to meet us, stethoscope flying. Alex is
admitted and taken to a private room. Tests show what his doctor suspects. Alex has had a
stroke. She also discovers that an opportunistic infection has taken hold.
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VI
Ironically, it is the cure that kills him. In spite of new cell growth from Matthew’s
marrow, the transplant procedure leaves him immuno-suppressed and vulnerable to normally
harmless things in the environment. He picks up a fungus in his lungs. He is defenseless against
it. Aspergillus is a fungus that lives naturally in the soil, apparently stirred up by new
construction at the hospital in Florida.
The stroke slurs his speech. The fungus spreads like dry wildfire, covering organs at an
alarming rate. The last thing he says when he is still able to speak is, “I love you, Mom.”
I think, “How can you love me? After all I expect you to go through, all I ask of you just
to keep you one more day and one more day and one more day. How can you love me?” I
appeal to God. “Look, Lord. What’s it to you? You don’t have to worry about him. I’ll take
care of him. Let me keep him. Just let him live.” The psalm says the Lord is good; his mercy is
everlasting. Is that a fact?
The fungus covers his brain, putting him into a coma-like state. He lives for several days,
slowly shutting down, his breathing becoming shallower and shallower until it stops.
He dies on April 15th. Eliot is right. April is the cruellest month.
VII
His doctor approaches me about donating Alex’s body for instruction and research. I
have reservations about her request. I tell the doctor that my brother-in-law is a physician and he
has told horror stories of the indignities suffered by cadavers at the hands of medical students.
She assures me that Alex will be treated with the utmost respect. I make her promise that she
will be in attendance at the autopsy.
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I am mailed the report which shows that the cancer has indeed returned after the bone
marrow transplant. I call his doctor and thank her for everything she has done. She tells me that
recurring Neuroblastoma is hideous and that his death from the fungal infection is merciful. So.
The psalm is right after all. She then tells me something that confounds me in its seeming
irrelevance. She says, “Did you know that the Neuroblastoma cancer cell looks like a rose under
the microscope?” All I can visualize is a bouquet.
VIII
They start his memorial service without us. His father and his brother and I arrive as the
minister is finishing his reading of the 100th Psalm. When we are not in place at the beginning of
the service, everyone thinks we are overwrought and unable to attend.
I can feel eyes and faces turned to watch our entrance. We walk up the aisle to the front
pew. My shoes sound very loud on the marble floor. Matthew is squeezing my hand. A woman
in the fourth row reaches out to Matthew. We stop and wait while she hugs him. There is a
velvet rope laid across the end of the empty pew marked, “Reserved.” We lift the rope and take
our places.
IX
I have precious gifts that I can pull out and unwrap any time I need them. I am given
sensory memory so that I can taste the salty-sweet, sweaty skin when I kiss the back of my little
boy’s neck. I can hear his husky voice whispering, “I love you.” I can smell the fresh air in his
t-shirt when he comes home after speeding down the street on his bicycle on a crisp fall day. I
can feel the warmth of his lips when he brushes my cheek with a good-night kiss. I can see the
trust in his eyes, total and complete.
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I think I understand what heaven is. I realize that I am given the edge of a glimpse of it
in the love that I have for Alex. I have no idea of the capacity I have to love another person until
I must let him go – how deep that love can be that it becomes a physical thing in and of itself.
I also understand that as wrenching as it is to lose a child, there are things worse than
death.
X
I return to work after an absence of nearly a year. I am sent to Los Angeles to attend a
trade conference in May. One of our customers gives me a free day pass to Universal Studios. I
join a group of hotel guests as we take a shuttle from the Biltmore to the studio lot. I climb onto
the tram and take a seat in the back. We ride on tracks through the control room from Battlestar
Gallactica, into the water as Moses parts the Red Sea, down Main Street in Back to the Future,
and past the Bates Motel. We turn the corner and see the Cleavers’ house from Leave It to
Beaver.
June Cleaver, I think, would have found that tumor if it had been in the Beave’s belly.
She would have been able to feel his forehead and say, “Beaver, dear, you feel warm. I think
you have cancer. We need to get you to the doctor.” And in her pearls and perfectly coiffed hair
she would have called the doctor who would have made a house call, taken the Beave’s
temperature, diagnosed cancer, and cured his disease with some liquid elixir and a serving of ice
cream. Ward would have helped Beaver learn some essential truth, and Wally would have
teased the Beave about it. All in one episode.
We see the front of the house, perfect with its wooden clapboard siding, painted shutters,
curtains at the windows, basketball goal in the driveway, flowers rimming the curved walkway.
The tram circles and we go around to the back of the house.
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It is a mere façade, the front of the house propped up with 2 x 4s. The curtains are real,
but the rooms they are shielding are not. There is no Wally, no Beave, no June, no Ward. I turn
my head, close my eyes, and cry for the first time since Alex dies.
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