Tracy, Diagnosed as a toddler, sickle cell disease

Bone marrow transplant returns young woman’s energy to enjoy an active pain-free life

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.

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.”