The need for child-specific treatments is largely ignored by funding incentives; so kids pay.
Four-year-old Danny runs around his room in his fire truck and ambulance pajamas, his mass of wavy brown hair bouncing. Tiny action figure toys and cars that are spread out all over the floor.
Looking at Danny, you wouldn't know he has cancer. But reality sets in when the nurses and doctors enter the room to give him his treatments. His father brought Danny to the hospital because of a fever, which can be dangerous for a child with cancer. After two days, the doctors at A.I. DuPont Children's Hospital in Wilmington, Delaware, were ready to send him home.
But first the nurses had to remove Danny's port, which is an intravenous tube that goes into his chest, and is accessed with a needle to inject his treatments. When the time comes to take it out, Danny's eyes fill up with tears. His dad, holding back tears himself, picks him up to put him on the bed.
Two nurses hold him down, and his father tries to comfort him: "It's just like taking a Band-Aid off."
"When he looks at me, and he's crying, and he says, 'Why?' -- that's when I get upset. It's a terrible feeling," said Danny's father, Daniel Feltwell of
Margate, New Jersey. "As a parent you want to take away all the pain. And I can't."
In November 2010, Danny was transported to A.I. DuPont Children's Hospital after several days of being treated for what was thought to be a chest cold. After numerous tests, Danny, who was 27 months old at the time, was diagnosed with T-cell lymphoblastic lymphoma, a rare and aggressive form of non-Hodgkin's Lymphoma.
His doctors started chemotherapy immediately -- frequently and in large doses. Danny became bedridden. Over the first few months of treatment, Danny experienced side effects including ulcers, pancreatitis, high blood pressure, and a racing heart. In the first year of treatment, Danny was in the hospital for a total of 259 days.
Even though he received the appropriate dose of chemotherapy for his weight and age, he didn't process it properly. So the doctors had to stop giving Danny chemotherapy, and he has been on and off the treatment over the past two years.
"We have to make my son hurt in order to make him better, and that's the hardest thing to accept," said Feltwell, who's raising Danny on his own.
When Danny was first diagnosed, Feltwell quit his job as an electrician in order to care for his son, and they moved in his parents' home to save money. But when Hurricane Sandy hit the East Coast, he went back to work due to the cost of all the damages. Feltwell's parents look after Danny while he's at work. The only thing Feltwell does besides work is look after his son.
"Not knowing my son is going to survive -- that's the hardest part," he said as he forced back tears. "He's everything to me."
Danny takes a long list of medications and treatments. At home he takes 14 different medications daily and weekly; some are chemotherapy drugs and others treat various side-effects. Every month Danny receives an infusion IVIG to help fight off potential infection, chemotherapy, and a spinal tap with an infusion of chemotherapy.
He takes his medications without a fuss, Feltwell said. Danny's only life has been going to the hospital and taking his medications, so this is normal to him. But Feltwell worries constantly about the current and future side-effects. "He feels like shit every day," he said.
Danny and other children with cancer could benefit sufficiently from more research into pediatric-specific treatments. While adult-oriented chemotherapy is proven to help cure cancer, it has innumerable side effects. Even though the treatments are approved for children, they are also the same used for adults, just at a lower dose.
But there is not enough funding for childhood cancer, specifically. The National Cancer Institute, a government organization, provides funding for researchers, but only 10 percent of them can move forward with their findings due to budget cuts. Most of the financial support researchers receive is from philanthropists.
In the meantime, research that could benefit children on an individual level stays in the lab, and doctors prescribe the same regimens that can be successful, but can also hurt the patient in several ways. Researchers say they are working hard to discover new theories and treatments, but they feel they are being held back.
"Ninety-six percent of grants don't get funded," said Dr. William Carroll, researcher and director of the cancer institute at New York University. "There's no doubt there's less funding available, and it's driving people out of the field."
In 2007, about 10,400 children were diagnosed with childhood cancer, according to the NCI, and about 12,060 diagnoses were expected this year. About $122 million was spent on non-Hodgkin's lymphoma (just one form of childhood cancer) in 2010, according to the NCI. But that is low compared to other forms of cancer, like breast cancer, which received $631 million. Since 2010, the budget has continued to decrease.
"When October comes around you will see all the pink ribbons [for breast cancer], but you don't see many gold ribbons in September [Childhood Cancer Awareness Month]," said Joe McDonough, who founded the B+ Foundation, which provides financial support to families, after his son passed away.
McDonough said he thinks one of the reasons childhood cancer doesn't get as much funding is that pharmaceutical companies won't receive as much money from the medications. He also says the government uses the rarity of childhood cancer to avoid funding it.