Danny Feltwell has been fighting cancer and related health conditions most of his life. Now 11 years old, he was diagnosed with a rare and aggressive form of non-Hodgkin’s lymphoma at age 2.
Danny received 2 ½ years of chemotherapy at A. I. DuPont Hospital for Children in Wilmington. About six years after his story was told in an article in the Atlantic about limited funding for childhood cancer, he is being treated for a multitude of health problems.
After being in remission for more than four years, Danny, who lives in Wenonah, New Jersey, relapsed in December 2017. He received a bone marrow transplant a few months later, but the donor bone marrow is attacking his body, especially his liver.
Danny is on expensive immunosuppressant therapy. His single father, Dan Feltwell, had to beg the insurance company to cover it, before it was FDA-approved.
The treatments Danny has received have kept him alive. However, they have also caused a host of other health issues.
“Physically, it’s been debilitating for Danny,” Feltwell said. “Danny’s fine and gross motor skills were devastated when he finished treatment the first time. Danny couldn’t digest foods or make a normal bowel movement for almost four years.
“He finished treatment for bone marrow in March 2018 — it’s a year and a half later, and Danny is suffering tremendously. He’s physically debilitated, and it’s heartbreaking. It doesn’t have to be this way.”
Doctors, researchers, and parents like Feltwell say increased funding and research into pediatric cancer is crucial to develop and research treatment options specifically for children.
This week, A.I. DuPont announced that it received $4.7 million in renewed funding from the National Cancer Institute for its research program.
This is the second time the hospital has gotten funding from an NCI program that supports cancer treatment and prevention trials in community hospital settings. Previously, the hospital received a one-time grant to be used over five years. This time, the hospital will receive funding over a six-year period.
“Clinical research and intensive treatment for childhood malignancies is very hard and very expensive, and very little of that is reimbursed by insurance companies,” said Andy Kolb, a physician at A.I. DuPont.
“Most of this is supported by the institution and federal grants and philanthropic support,” Kolb said. “So our goal is to create a team and infrastructure to provide every kid with the best care available and the care they need to cure their cancer.”
Childhood cancer research historically has been underfunded. The National Cancer Institute gave close to $63 million to fund childhood leukemia research in 2017. Non-Hodgkin’s lymphoma research received about $119 million. Breast cancer, the most common type of cancer, on the other hand, received $545 million for research.
“I think there’s a real recognition pediatric cancers are distinct diseases that need specific funding. We can’t expect a trickle-down benefit from adult cancers — I think we’ve got as much mileage as we can from that approach,” Kolb said. “There have been significant initiatives to fund more pediatric research — but the funding gap and need is still there.”
It’s estimated there will be 11,060 new cases of childhood cancer in the United States this year, and 1,190 deaths.
Childhood cancer drugs are slow to develop, however, partly because of a lack of research funding and a focus on cancers that are more common. Children with various pediatric cancers must rely on adult treatments that are effective but have innumerable side effects.
“Kids are growing. Some of the drugs that are toxic to normal tissues in normal adults are toxic to tissues that are finished growing. In kids, the toxicity often does irreparable damage that kids don’t have the ability to adapt to or outgrow,” Kolb said.
“So treating a cancer in a 2-year-old successfully means you’re hopefully getting 80 years of post-cancer survival — but you’ve exposed that 2-year-old to significant toxicity. And for some treatments, that toxicity is carried with them throughout their entire life. In older adults, you may only get a few years or a couple decades of survival after cancer treatment, and adults have reached their full growth and development, so the long-term toxicity is somewhat less.”
A.I. DuPont will use the NCI funding on its clinical-trial program, which in 2018 received 189 enrollments for 80 eligible patients.
Kolb said the research program must still work with treatments that also are being used by adults, but they are researching more immunotherapies and targeted therapies. Targeted therapies attack the cancer cells, but not the normal cells. Kolb and other doctors hope the treatments will increase survival rates while lowering side effects in children.
Kolb said the goal is to use data to inform the development of new cancer drugs for children. He hopes the funding will grow.
Danny’s dad, Dan Feltwell, said he hopes the funding will ensure that kids won’t have to go through the side effects his son has faced.
“We have to fix what we had to do to my son to save his life. That’s difficult. It doesn’t have to be that way. So yes, this money is a blessing. I just wish it was more,” Feltwell said. “They need it. They can help a lot of children — they do help a lot of children — and this money will help a lot of families. But we have to figure out a way to give them more.”