Welcome to the Bone Marrow Transplant (BMT) unit at Medical Colleges of Virginia in
Richmond. Cancer patients here face a mixed blessing. Bone marrow transplantation is a
modern miracle of medical science that's saved countless lives. Yet a BMT can be fatal.
The procedure involves the patient receiving high doses of chemotherapy and total body
irradiation which decimates the bone marrow (the body's blood producing factory). The
idea is to give more intensive therapy to effectively wipe out the cancer and also to clear
the way for an infusion of healthy donor bone marrow to engraft in a new home. This
process takes several weeks or more. Meanwhile, the patient waits at death's doorstep
wondering if it will work. For some it doesn't.
Such are my thoughts on November 28, 1998, as my wife and I escort Doris, 12, to the
BMT unit for admission. While not dwelling on the misfortune of Doris' diagnosis of
acute lymphoblastic leukemia in May 1998, or its recurrence five months later, we're
silently thankful for the matching donor found in her 11-year-old sister, Rose.
Our focus at this point is goal-oriented. Once we're buzzed through the security entrance
of the BMT unit, a weary Doris turns to her mother and me and says, "Let's get this thing
over by Christmas."
While our passage into the BMT unit for Doris' admission opened a new chapter in our
fast paced story, it closed yet another quick chapter. The 30 days before her admission
had been intense. Once Doris achieved a second remission, we quickly packed our bags
and dashed off to Orlando, Florida, courtesy of Make-A-Wish Foundation.
The day following Doris' wish trip found us right back to the grind of running daily
between our Fredericksburg home and MCV in Richmond for numerous pre-BMT tests;
surgery to install an indwelling catheter; and, six consecutive days of cranial radiation.
Doris and mom before surgery to install the Hickman catheter.
Doris and mom before leaving for the hospital.
Once admitted, the count down starts with Day -5 and -4 consisting of chemotherapy.
Total body irradiation is administered twice a day on Days -3, -2, and -1. This is done to
destroy the bone marrow--to "prepare" it to accept the infusion (on Day 0) of the new
marrow harvested from Rose.
Although the procedure is easy for me to describe, it's impossible to convey my feelings,
for example, watching--safely, by monitor--as Doris stands perfectly still for 20 long
minutes to absorb the invisible beams cranked out by a droning radiation machine.
Doris receiving an infusion of Rosey's marrow.
The days following the transplant are positive numbers (e.g., Days +1, +2, +3, etc.). It's
a waiting game for marrow engraftment, return of blood counts, and the resumption of
Doris' ability to drink or eat.
We also had to adjust to a new ward and staff. Unlike in the pediatric unit there are
mostly adult patients in the BMT unit. I write down my impressions.
It seems so serious and quiet. No kids escaping their rooms and sprinting
down the hall making motor sounds. No kids sitting in little chairs,
wearing party hats, and eating treats under the watchful eye of a fairy
Godmother--a common activity at the pediatric clinic. Jackie, the fairy
Godmother, visits Doris regularly. Dr. Yanovich would have a fit if he
knew about the presence of fairy dust in this sterile environment!
In the room, the telephone rings. Only Doris can answer because of the
risk of spreading germs with the handset. The caller asks for someone who
apparently had been a patient in this room. What happened to the
previous patient? We don't know and certainly are afraid to find out.
Careful boundaries at the edge of an abyss.
Several days into the countdown, Doris' emotions surface. "I'm scared." We hug, which
may not seem like a big deal but this was different. It was a long, desperate, clinging,
holding on sort of hug that we would repeat often.
At home we had help from Aunt Lana Schindler, Grandma Elaine Wilson, and aunt Dana Gowen.
Darren's mother, Cheryl also came to help.
My wife and I work in shifts staying with Doris. On one of the nights, after she has
begun to sleep following several intense hours of vomiting and diarrhea, I lie down on
the spare cot in her room and reflect on an earlier consultation:
The doctor says, "Doris, we will give you chemotherapy and radiation
and this will cause you to feel weak and nauseated. It will cause hair loss
but since you currently have no hair, this is not a concern. The drugs we
will give you following the transplant, however, will cause you to grow
hair."
"Hey, that's great!" I say with a smile that freezes when I see no
reciprocation of excitement.
The doctor adds, "These drugs may also cause you to grow some hair in
other places. Like on your face."
Try as I might I cannot visualize Doris with hair. Excessive hair is the
least of our worries at this point.
The doctor continues: "But this is only a temporary situation. Everything
will return to normal eventually."
My reflection ends. I turn over on the narrow cot in the darkened room and listen to the
periodic gurgle of the IV pump. I say to myself, "Yes, eventually life will return to
normal as before. The only thing Doris and the rest of us will have to worry about is her
leukemia returning."
We'd been told that the fastest any kid has been released from the BMT unit was three
weeks. With her mother and me as culpable participants, Doris implements her 3-part
strategy to reach her discharge goal.
The first part is exercise. Ten days (Day plus 10) post-transplant, I return from lunch to
find Doris with her face mask on, pacing up and down the hallway with an IV pole that
has six or seven plastic bags swinging from its top. I notice that all of the patients at
some point do this--the hall walk. It's inspiring to see people who haven't been able to
eat or drink for several weeks following chemo and radiation, pace up and down the
hallway. Their eyes reveal a focused intensity that Olympic athletes would envy. I
notice that Doris has the same look.
The second part of the strategy is psychological--influence the gatekeepers. When we
hear the doctors making their rounds, Doris hops onto the stationary bicycle in the room.
I open her room door so the doctors will notice what she's doing, should they walk by.
The third strategic component of obtaining freedom from the isolation of the BMT unit is
eating and drinking again. The therapy disrupts the mucous membranes of GI tract.
Regaining the ability to eat is a slow and gradual process. On two occasions, an over
eager Doris overeats and is placed back on intravenous nutrition. Despite the setbacks,
she keeps pushing hard to reach her goal.
On Day plus 23, Doris wins her discharge and returns home, just in time for our family to
be together for Christmas.
According to the Leukemia Society of America, acute leukemia is the principal disease
killer of children in the United States. Over the last two decades, the incidence of
childhood cancer has increased 20 percent. Its cause remains a mystery. Improved
treatments for childhood cancer, including bone marrow transplantation, have resulted in
higher survival rates.
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