"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.