For a school project, James chose to write about the underfunding of pediatric cancer research.
Any family with a child battling cancer is familiar with the number 3.8.
It's the percentage of all federal cancer research funds earmarked for pediatric cancers. For James, and for parents fighting for their child’s life, there’s no justification for this small number. These are kids, after all, and they should have a whole bright future ahead of them.
James was diagnosed at sixteen with Ewing’s Sarcoma, a type of bone cancer that mainly affects children and teens. He’d just made the baseball team when he noticed a knot in his thigh that wouldn’t go away. An abnormal x-ray prompted an MRI, and it was his own pediatrician who gave him the news. The adults around him were understandably in shock. At first, James was stunned too, but he quickly set his mind to beating the disease.
“I can get through this,” he recalls thinking. “There’s no point in being sad about it.”
And he did get through it.
But it took sixteen rounds of chemotherapy, thirty days of radiation, and nine months of his life. In and out of the hospital, he spent much of that time either feeling sick or sleeping.
Friends and family helped. Fourteen kids shaved their heads to show support. His little brother took over household chore duty, and even went to the clinic to hang out and do magic tricks for the little kids. Mom, Christy, took a leave of absence from work for the year. “I tried to keep things as normal as possible for him when he wasn’t in the hospital,” she says. But it was tough. She acknowledges that watching her son suffer through this disease has been one of the most difficult things in her life.
James managed to stay enrolled in his grade, and now as a senior, he’s beginning the college search.
“It feels good to have a normal year,” he says.
Still, things aren’t completely back to normal, and they may not be for a while. While he hopes to play baseball this spring, his leg is still weak and the bone is fragile. Physical therapy is helping, but for an active kid used to spending most of his time outside, it’s been pretty devastating.
“I’d take another round of chemo just to be able to run again,” he says quietly.
The prospect of relapse stills hovers like a shadow, and although James doesn’t dwell on it, he will have to have his blood tested and his body scanned for years.
Three point eight percent . . .
just isn’t enough.
Measure that against a family’s nightmare, a child’s suffering, and a life interrupted.
Diagnosed with Ewing's Sarcoma at 16