PHILADELPHIA (CBS) – One of the goals of the Alex's Lemonade Stand Foundation is to not only find cures for pediatric cancer, but to find less toxic and more innovative treatments for childhood cancer. On Thursday, CBS3 hosts our 13th annual Alex Scott: A Stand for Hope telethon.
After two bouts of cancer and a bone marrow transplant, a less toxic treatment saved 10-year-old Danny Feltwell's life.
Danny is back in the gym at Nemours duPont Hospital, smiling and playing ball.
"I'm feeling great right now," Danny said.
It's a dramatic change from before.
Danny's young life has been filled with a roller coaster of highs and lows after being diagnosed with non-Hodgkin lymphoma when he was 2 years old.
"It's horrible to watch your child suffer and in pain, being sick, it's horrible," Dan Feltwell, Danny's father, said.
Danny was initially treated with chemotherapy and after four years in remission, the little boy who loves sports relapsed.
In March 2018, Danny had a bone marrow transplant, where his immune system was replaced by the donor's.
But he very quickly developed graft vs. host disease.
"That new immune system is now attacking Danny's normal cells," Dr. Edward Anders Kolb said.
Kolb, the director of Nemours duPont Hospital's Center for Cancer and Blood Disorders, says the standard treatment for graph vs. host disease is toxic.
The alternative is a drug called Jakafi, which is prescribed by off label because it's not FDA approved for use in children under the age of 12.
"The drugs we use to treat kids are off label, the FDA hasn't approved them for specific, rare indications," Kolb said. "But they are very effective in these specific and rare indications."
But Danny's insurance company said no and it refused to pay.
"It's heart-wrenching knowing that there is something that could help your child and being told you can't have it, can you imagine?" Feltwell said. "That's horrible."
Danny was deteriorating fast while the team at duPont appealed to the insurance company.
"Danny didn't make the cutoff just by age," Kolb said, "but he's as strong as any 18-year-old out there. It was pretty easy to make the case that he should get it."
Finally, the insurance company said yes.
With Jakafi, Danny's condition improved quickly.
Danny is working to regain his strength and is now looking forward to his future.
"All I know is I want to be a sports player," Danny said.
He already has a special connection with the Eagles.
When Danny was really sick, Carson Wentz sent him a video, saying, "Danny, I'm praying for you."
By his side for all the ups and downs, Feltwell, a single parent, is always finding ways to distract his only child.
"No child should ever go through this, no parent should ever have the knowledge that I have," he said. "When Danny was diagnosed, I've resigned myself to the fact that I've lost my peace of mind and I'll never get that back. I'll always worry, not knowing, not having a definite answer. That's the hardest part."
But for now, Feltwell is enjoying watching his son smile again.
A hero who is a true fighter and a dad who will never give up.
That is what Feltwell wants everyone to know, that for kids with cancer parents have to be fighters too – and never take no for an answer.
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