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.
"When my son died at the age of 14, he died with like 70 years of potential," he said. "Our children aren't even going to grow up to get breast cancer or prostate cancer."
People don't understand that children also get cancer, and it affects researchers and ultimately the families going through it, said Jay Scott, the founder of Alex's Lemonade Stand.
"Kids aren't old enough to vote, so politicians don't have to answer to kids," he said.
Carroll is interested in defining the genetic landscape of tumors, specifically with leukemia. His team discovers the acquired genetic changes in the cancer cells that distinguish them from normal cells, and are responsible for the cancer-like characteristics of uncontrolled cell growth.
They compare the genetic changes at diagnosis (when the cells are susceptible to chemotherapy) to relapse (when they no longer respond to treatment) in each patient to determine the biological pathways that are responsible for drug resistance. But genetic genomic profiling is costly, Carroll said
"I'd love to work on many projects, but we can only do so much based on the money we can get," he said.
The 10 percent of research that does get funding is less risky, he said, because the NCI doesn't want to spend money on projects that don't have a sure outcome.
"You have to show a record of wins, which means sometimes investigators are less likely to take high-risk projects," Carroll said. "But high-risk projects could have good results."
The federal government has tried to improve community and industry investments, but their measures have fallen short, said Dr. Andy Kolb, one of Danny's doctors. Acts have been revised to incentivize testing for children, so that pharmaceutical companies would earn more money. However, it doesn't incentivize positive results, Kolb said.
"Even if a drug has potential, there's no requirement to do additional testing," he said.
In the same time period, there were about four drugs approved for children as opposed to about 200 for adults, Kolb said. Instead of focusing on the next adult cancer drug, and testing it on children, he says, they need to find the next childhood cancer drug and test it on adult cancer.
"We're at an age where drug discoveries and targeted therapies are exploding. Few of them have been effectively used in children," Kolb said. "While it's an exciting time to be a cancer researcher, the benefit has not filtered down to children with cancer."
After numerous requests for an interview over a four week period, the NCI was not available for comment.
A week after Danny was running around the hospital room in his pajamas, he's back again to receive treatments. He walks down the hospital halls, and says hello to all the staff members.
"Danny is like the unofficial mayor," Feltwell said.
Danny will see Dr. Edie Burkey, one of a team of doctors that treat him. He will be treated with chemotherapy again after a three month hiatus. He'll receive only 25 percent of the recommended dose due to the side effects he experienced last time. The doctor increased Danny's oral chemotherapy that he takes at home.
"More chemotherapy is always better," Burkey said.
After Danny receives IVIG, he and his father go home, and drive two and a half hours back to the hospital the next morning. Danny has a rectal exam because he isn't going to the bathroom and is in pain, then receives his monthly spinal tap and chemotherapy.
Danny is sitting on his bed with his stuffed animals, who also wear Band-Aids, when the doctors enter the room to give him his anesthesia.
"I don't like needles," Danny says.
His father holds his hand and comforts him.
"Do you like milkshakes? This is like a hospital milkshake," the doctor tells Danny.
After Danny falls asleep, Feltwell sits in the waiting room. He's had no sleep. His baggy, lined eyes are filled with what seems like a hundred years of worry.
"It's hard. It never gets any easier," Feltwell tells me. "It feels the same as it did the first time. I feel physically sick."
After the rectal exam and the spinal tap he goes back to the hospital room and waits for his son to wake up. After every slight movement Danny makes, his father stands up and looks into the bed to make sure he's okay.
"I stare at that monitor," Feltwell says, watching the machine above Danny. "I stared at that thing for a year. I can tell by looking at it what's wrong with him."
When he wakes up he is taken upstairs to get his dose of chemotherapy -- only 25 percent of the recommended dose, despite Feltwell's request to give him 50.
There are medications that have been around for a long time, and they're just as effective for children as they are for adults, Kolb said.
"Forty years ago, if I was diagnosed with leukemia I would be given a 40 percent chance of survival -- if that," he said. "The survival rate is much higher now, like 85 and 90 percent."
However, prescribing medications is always difficult, and it's always a calculated risk, Kolb said. Nobody wants to give Danny medicines that cause side effects, but they don't want the cancer to regain its footing and come back stronger.
"Some of the treatments are a large cost for the cure they give you," Kolb said.
There needs to be investment in newer technologies through genomics or other omics technologies, said Dr. Peter Adamson, head of the Children's Oncology Group and oncologist at the Children's Hospital of Philadelphia.
"I'm optimistic at the ability we have to make discoveries. I'm also impatient." Adamson said. "While I'm optimistic we have groups of people working tirelessly to find better treatments, some of that could be addressed with better resources."
Feltwell and other families try to remain positive too.
"There's a chance we can save my son's life," Feltwell said. "That's what I keep thinking about. I can't imagine him not being here."