Mother and son had about the same conversation each time she sat down to eat in his hospital room.
“Do you want me to step out? Is that bothering you?” asked Danielle Fletcher, 34.
Brandon Fletcher, 14, spent the summer at Children's Hospital recovering from a second bone marrow transplant. His mother, Danielle, learned to value the meaning of home while waiting for him to return.
MORE LOCAL NEWS
“No, it smells so good! It doesn’t bother me,” 14-year-old Brandon said. “When I can eat, can you make me spaghetti?”
“Sure, I can make whatever you want.”
Brandon, recovering from his second bone marrow transplant at Children’s National Medical Center in the District, had only clear liquids for five weeks. When he finally could eat, he started with things like gelatin, crackers and noodles with butter. So he craved whatever his mother was having, sometimes lasagna, sometimes Chinese food. He daydreamed about Panera Bread’s Bacon Turkey Bravo.
For about 15 weeks, Brandon’s whole life was inside that room. Most people who came in wore gowns and masks to protect him from infection. (He was discharged twice, but only for a few days.) He missed a summer of fishing and playing with his brothers — Corey, 11, Jonathan, 9, and Aaron, 2 — at the family’s farm in Port Tobacco, Md.
His family’s life changed, too; his brothers stayed at a Ronald McDonald House in the District so they could visit often. His mother and father, William Fletcher Jr., 32, vowed that Brandon would never spend a night alone.
Children’s Hospital has the only dedicated pediatric National Marrow Donor Program transplant center in the D.C. region, and hospital specialists have performed more than 400 blood and marrow transplants since 1988. It has become a home away from home for kids like Brandon, who spend weeks, even months, there as their immune systems slowly recover. For the young patients and their families, it is a time that can be scary and frustrating and hopeful.
Brandon rarely complained, but sometimes it was hard to be stuck there, to miss so much.
“Can I eat food?” he often asked his doctors.
One day, that “No” was too much.
“I’m tired of this place! I’m tired of you people telling me I can’t eat,” he said. “I’m just sick and tired of it!”
* * *
Brandon has a rare genetic disorder — Shwachman-Diamond Syndrome. It causes pancreatic dysfunction, growth problems, and bone marrow dysfunction or failure. Eventually, it causes leukemia.
Until he was about 6 months old, Brandon was in and out of the hospital. In kindergarten and then in fourth grade, he was hospitalized with cellulitis, a skin infection caused by bacteria. But other than that, everything looked good.
Until September 2009.
“I always knew there was a chance he could develop leukemia. When this whole thing hit me, it hit me hard, because I was in denial. I was treating him like he was not a kid that was sick, he was just a normal kid,” Danielle Fletcher said. “This pretty much changed our life.”
Brandon’s parents carry the genes for the disease. Brandon, the oldest of their four children, is the only one who has it.
Brandon had his first bone marrow transplant in March 2010. After 90 days in the hospital, his immune system slowly got stronger, eventually allowing him to go back to school.
Loading...
Comments