"I want to see him happy and healthy," says Tahira Qureshi about her son, Waleed, who received a stem cell transplant to correct a rare blood disorder.
A life in the balance
Progress in science and technology, however, can't mask the complexity and continued hardship of a stem cell transplant for children whose lives hang in the balance, and their families. Only a year old, Waleed Qureshi has spent most of his young life in hospitals. He was diagnosed as a newborn with hemophagocytic lymphohistiocytosis, a rare, life-threatening blood disorder. Not technically cancer, it is often treated the same way, and Waleed was referred to the transplant service after receiving chemotherapy in a hospital near his home in Bristol, Conn. A match for his bone marrow was found in donated cord blood.
As he recovered from the procedure this winter, medications had swollen Waleed's cheeks and caused facial hair, but they had not drained his energy, as he waved to visitors and reached for every object in view. His mother, Tahira, spent every minute with her son, even curling up next to him in his crib each night. Her husband called several times a day and visited on weekends when he was not working.
Melissa O'Connor, MS, RN, PNP, a stem cell transplant clinical nurse specialist at Children's, warns families that you never really know what a transplant experience will be like until you actually go through it — no matter how prepared you are. Waleed had his transplant in October 2004 and would have been home 4 - 6 weeks later, but by January he was still in the hospital facing GVHD and other problems. Hannah Green was sicker the second time around, plagued by a severe case of mouth sores from her high-dose chemotherapy. And Carsyn Gilloren, who received a transplant for AML when she was 18 months old, contracted a respiratory virus just when her parents hoped she would be discharged.
Eventually, Jennifer and Chris Gilloren became experts in Carsyn's care. They recite childhood leukemia statistics, understand the value of stem cell concentrations, and when Carsyn begins to cough during a recent interview, rush to hold a towel under her chin to help with the vomiting they know will follow. Their 5-year-old daughter Avery, who donated stem cells to her sister, declares, "My blood is helping Carsyn's blood work better." Even though the days of the bubble are long gone, the Gillorens still describe their life on 6 West this way: "Our world is here, on this unit. It's like living in a new kind of bubble. We don't look too far into the future."
According to O'Connor, transplants often go more smoothly for children than for adults, because their bodies are more "pristine." Emotionally, younger children fare better than older ones, because they may not fully grasp the gravity of the experience or understand the long-term consequences. "It's a tough experience for teens," she says. "They are concerned about their looks and want to be 'normal' again. Often the hardest part is not being with their friends. For months afterwards, they must avoid crowds, which rules out parties and malls. How do you tolerate being in isolation, when for many the most important thing is a social life?"
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