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hematology service
Diagnosed as a toddler,
sickle cell
disease
As daily routines melt into weeks and months, it’s often
easy to take “normal” for granted. But Tracy doesn’t
fall into that trap; she knows each ordinary, uneventful day
is a blessing, a gift for which she will never stop being
grateful.
For years, sickle cell disease left Tracy too
exhausted to do most things children and teens enjoy.
Hanging out with friends, shopping, participating in sports
– even staying up late to watch movies – were out of the
question.
Then Tracy’s brother gave her a present she will always
remember – he donated bone marrow that allowed Tracy to have
a transplant at Texas Children's Hospital.
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While bone marrow transplants have been performed for years
to treat difficult cases of leukemia, they are relatively
new and rare as treatment for chronic blood disorders such
as sickle cell disease.
Texas Children’s stem cell and bone marrow transplant unit
is one of the few pediatric hospitals in the country that
performs such transplants. Nearly 70 patients with a variety
of different disorders were transplanted in the 15-bed unit
during 2001.
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When Tracy was a toddler, she had a mysterious fever of 102
degrees for weeks. Her parents, Johnnie and James, tried
everything, but nothing lowered her temperature. Then Tracy
had what appeared to be a light stroke, and blood tests
helped doctors diagnose sickle cell disease.
“I didn’t really know what it was,” Johnnie says. “I
wondered if it was dangerous, what kinds of treatment were
available, what we could expect for Tracy. It was a pretty
difficult time.”
Tracy was then referred to
Texas Children’s hematology
service where the family soon learned
sickle cell
disease, also called sickle cell anemia, is an inherited,
chronic blood disorder that affects the shape of the red
blood cells. Normally disc shaped, the cells become crescent
shaped, like sickles, and function abnormally. Because the
damaged red blood cells break down or the bone marrow fails
to produce enough new cells, the disease causes anemia. The
disease predominately strikes Hispanics and
African-Americans.
When Tracy was 5, her hemoglobin -- a protein carried by red
cells that takes oxygen to tissues to maintain the cells’
viability – decreased to dangerously low levels. Once she
was stabilized, Tracy started a routine that would last
through her teenage years – the years most children are
active and full of energy. Instead of bike rides and
amusement parks, her world included weekly blood
transfusions, multiple medications and nightly use of a
machine that administered desferal, a drug that rids the
body of excess iron that accumulates in
chronically-transfused patients. Doctors mentioned a
bone
marrow transplant as an alternative, but the family was
reluctant.
“We knew we would have to consider a bone marrow transplant
as Tracy got older, but we were cautious because it was a
relatively new treatment for sickle cell,” Johnnie says.
In the meantime, Tracy literally grew tired of her daily
routine.
“I was very weak and exhausted all the time,” she says. “I
couldn’t participate in any activities because I got too
tired. I couldn’t even attend outdoor events, because being
out in the sun was too much for me.”
Entering her senior year of high school, Tracy was ready for
a change. The family decided to go ahead with the
transplant, and her brother Anthony, 20 at the time, donated
the bone marrow. It was a generous gesture that will always
be in Tracy’s heart.
“This was an emotional time for our family,” says Johnnie.
“The transplant made Tracy and Anthony extremely close.”
When Tracy returned to school in the spring, she was ready
to make up for lost time. She got busy right away – shopping
for hours, attending outdoor events and playing sports. Tracy
has
hopes of becoming a pediatric nurse in the future.
“The nurses at Texas Children’s really influenced me a lot,”
Tracy says. “I’d like someday to work at Texas Children’s
and be like the
nurses who took good care of me.”
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