By Stephanie Stahl

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.

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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.

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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.

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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.”

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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.”

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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.

Stephanie Stahl

Comments (48)
  1. Dan Roth says:

    The use of “alternative medicine” here is misleading. It is sad that it might lead people to embrace the broad range of quackery out there. This is allopathic (standard science-based modern) medicine involving the off-label use of a pharmaceutical.

    1. Dan Roth says:

      Thank you for changing the headline from “alternative medicine” to “new treatment”. It’s the responsible, public service minded thing to do.

  2. Paul Roberts says:

    “Carson Wentz sent him a video, saying, “Danny, I’m praying for you.” What a great role model! Thank you Carson! The Insurance companies are absolutely have too much control. The control needs to be with the doctor. Te pharmaceutical companies need to be controlled to make known cheap drugs available instead of being phased out for more expensive drugs that in many cases works better than the more expensive ones.

  3. Steve Fenster says:

    There is definitely something systemically wrong with the health care system in the USA. Insurance companies deciding life or death based on arbitrary “rules while morality is ignored. Recently I saw where 30 tablets of a particular drug in the USA cost $1400.00. The cost from Canada was $70.00. Our “leaders” do not have the will to reverse these atrocities, and the debacle is only symptomatic of a larger problem.

    1. The insurance company didn’t say the boy couldn’t have the experimental medicine; only that they wouldn’t pay for it. If insurance companies were required to pay for every untested treatment, they’d go bankrupt and be unable to pay for anyone’s treatment.

    2. Joe Pelley says:

      Funny, anyone supporting a single payer system should read this story again, then look up Charlie Gard. Charlie was in the UK and his parents wanted to take him to the USA for alternative treatment. UK health system forbade them from going. What makes it so disgraceful is, the Drs. in the USA were going to treat him for free, and his travel and expenses were going to be paid for privately. The UK government still would’ let him go. Disgusting. Was the UK health system afraid the treatment may actually work and cause them a hassle with the rationing of care for everyone else?

  4. Pete Wagner says:

    The health care industry lives by money, lots of it. Think it through.

  5. Grim Fandango says:

    His cancer “returned” at about the 5 year mark, as usual, because chemotherapy does not eliminate cancer. The cancer T cells remain after the normal cancer cells are killed (along with the patients immune system) and after approximately 5 years the T cells repopulate the body with fresh cancer, more aggressive cancer, and usually spread throughout the body.

    Pharma clearly knows this as it is their product and they are aware of every single case. Chemo is massively profitable, and they get to cash in at least two times on the victim. I personally know four people that followed this same painful, horrible path, only to die in agony when the cancer “returned”

    Pharma are alpha predators, psychopaths of the highest order.

    Google “Ty and Charlene Bollinger” to see some amazing and actual alternative treatments for cancer,

    1. Grim Fandango says:

      By the way, if you google “ty and charlene bollinger” this is a response right up there

      Clearly crafted by big pharma to poison the great alternative treatment. The Bollinger’s are obviously reaching way too many potential victims, they must be stopped.

      I especially like the 702 comments – not one single dissenting voice – that tells me all I need to know about their tactics and mission

  6. Bob Reid says:

    Get rid of all for profit insurance companies.

    1. Anecdotes mean nothing. The government should sponsor extensive science-based studies of “natural” medicine; only then would we know if natural medicine actually works. The pharma industry can continue its science-based studies of chemically-derived profit-driven treatments. Each year, whichever team–natural vs. conventional–has the most survivors wins. Over time, the efficacy of conventional treatment over natural treatments (or vice versa) would become clear. The problem is, studies are extremely expensive and sometimes take years to accurately evaluate.

  7. Sean Hurst says:

    what is the name off the OFF-LABEL DRUG ???

    1. Shrimp Howard says:

      That’s classified, sir.

    2. its called Jakafi, its in the article no secret

  8. Jeff Dreisbach says:

    The story did not mention how much the alternative medicine cost, or did I miss it?

    1. The heading for the article is misleading (fake news). The treatment the boy finally received isn’t “alternative” medicine; it’s “off-label” conventional medicine not FDA approved for children. The father also stated fake news. The boy wasn’t DENIED the treatment; he was not approved for payment for the treatment by the insurance company. The parents could possibly have purchased the treatment from the drug company. Drug companies will take money from anyone, but finding a health practitioner to administer the non-FDA-approved treatment would likely have been difficult. The drug would certainly be expensive as well, but don’t blame the insurance company. If requests for payment of non-FDA-approved treatments were to become routine, every insurance company would go bust, thereby eliminating treatment for everyone but the wealthiest. The wealthy would have to go directly to the drug companies. Wait a minute, could the drug companies survive solely on wealthy patients? You see the problem here, eh?

  9. Dale Emery says:

    I hope an editor was responsible for this terribly misleading headline, and not the author. What shame to label this as ‘alternative medicine’. Clickbait and borderline fake news. Real quality journalism from CBS-3 in Phildelphia.

  10. carmen camacho says:

    Stahl needs to go back to Journalism 101

  11. Shameless misuse of the word “alternative treatment” – this author is FAKE NEWS and a charlatan. What an ass wipe – disgusting. Using an off label DRUG is NOT ALTERNATIVE MEDICINE

    1. Jason Ledd says:

      Ha, ha, yes, only a drug can save you. Hurray for Big Pharma, lets buy stock in Pharma, yeah.
      Instead of getting poisoned to death by pharma, try real alternative medicine, which this kid will still require when his cancer returns, since the cause is likely still present. Cancer victims have a better chance of ridding themselves of cancer by using treatments that have saved thousands of people but we’ll never hear about since news media are simply cheerleaders for Pharma corps. Indeed, TV is supported by pharma, some shows have 70% pharma advertising. Look it up, its really Pharma TV. If you really want a chance at life try using colloidal silver in the order of 1/2 gallon per day until gone. Also try chlorine dioxide. Another one to use is Bob Beck blood purifier. All three of these treatments have saved thousands of people from cancers. In fact, your best chance to recover from cancer is to have your mercury teeth fillings removed, you know the ones they call silver fillings, because if they called it what it really is, mercury fillings, no one would get them. Most cancer is caused by your dentists. Of course, Pharma TV will never let you know about it on ABC, NBC, CBS, CNN, Fox news, etc.

      1. Lawrence William says:

        Hey Jason… how is that tin foil hat working out for you?? good grief.. where exactly is your home planet??

      2. Jason, there’s no evidence whatsoever that colloidal silver has cured a single case of cancer. However, the mind-body connection is POWERFUL, so if someone believes CS will cure them, well…

  12. Matthew Foster says:

    Very misleading headline. “Alternative Medicine” is generally understood to mean non-traditional/mainstream medicine, not just using a different drug off-label!

  13. Andrew Petersen says:

    Not really alternative medicine, but off label therapy. Glad he is doing so well.

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