Ronnie Polaneczky: Kyler's fight for life goes on, thanks to you

The generosity of Daily News readers has stunned the parents of 5-year-old Kyler.
The generosity of Daily News readers has stunned the parents of 5-year-old Kyler.
Posted: December 10, 2009

WHEN YOUR little boy is fighting a brutal form of cancer, the last thing you want is to expose his frail health to anything viral.

Last week, when Paul and Maria VanNocker let me tell of their son Kyler's battle to receive a potentially life-saving treatment, his story went viral.

This virus could save Kyler, not kill him.

It's not just that financial aid has poured in: Everything from a widow's $5 money order to an astounding offer, from an anonymous donor, of at least $35,000 toward Kyler's treatment.

But Good Samaritans have rushed in with broader forms of help for Kyler, whose fifth birthday was 10 days ago.

Pro-bono attorneys met this week with the VanNockers about bringing legal action against HealthAmerica, the insurance carrier that has refused to pay for MIBG therapy, which Kyler needs to knock his neuroblastoma into remission.

Do-gooders at the Arms Wide Open Cancer Foundation created a Web site and a Facebook page for Kyler (On Facebook, see "Help Save 5-year-old Kyler VanNocker." Also check out www.savekylervannocker.ning.com.

And Shaun Pugh, local co-founder of the brand-new Mark Foundation, is planning fundraisers for Kyler. Pugh and his friends have decided that saving Kyler's life would be an awesome inaugural mission for their children's charity.

Others have shared critical advice with the VanNockers. Parents of neuroblastoma patients, cancer researchers, sleepless doctors worried about Kyler - all have sent deeply researched e-mails to Kyler's folks.

"I am speechless," says Paul, a chatty salesman rarely at a loss for words. "I can't believe that so many people would want to help a little boy they've never met."

He worries that he and Maria won't be able to thank everyone.

Two years ago, he says, when word of Kyler's grave diagnosis spread through their town of Edgewater Park, N.J., people they didn't know would see them on the street and press money into their hands. People would push envelopes with cash through their mail slot.

Paul and Maria were so caught up in the exhausting chaos of saving their son, while also caring for their two other small kids, they couldn't keep track of who gave them what, of which family prepared dinner for them on which night.

"I feel awful that there are people we never thanked," he told me, sounding anguished, because he's that kind of guy. "And now here we are again," in yet another breakneck race to keep Kyler alive, "and we can't keep up. How do we thank people?"

What a happy problem to have.

Neuroblastoma is a rare and deadly form of childhood cancer that attacks the nervous system, creating tumors throughout the body. Diagnosed at 2, Kyler endured more than a year of painful, near-fatal treatment at both St. Christopher's Hospital for Children and at Children's Hospital of Philadelphia.

After a miracle year of remission, Kyler's cancer returned two months ago. This time, the only treatment known to be effective is MIBG therapy, in which a radioactive drug, delivered intravenously, travels to tumor sites, slamming them with radiation.

But Kyler's insurance carrier, HealthAmerica, has refused to pay for MIBG, which is not FDA-approved and which it deems "experimental."

The baffling thing, says Paul, is that HealthAmerica has covered other non-FDA-approved treatment for Kyler in the past, including experimental therapies.

Besides, MIBG is routine for neuroblastoma that has progressed as Kyler's has.

"It's considered the standard of care in Europe and the United States for recurrent neuroblastoma," says Kyler's CHOP oncologist, Stephan Grupp. "It's not an unproven treatment with no basis in medical science."

Jay Scott knows that firsthand. He's the father of the late Alex Scott, the pint-sized neuroblastoma patient whose name lives on in the Alex's Lemonade Stand Foundation.

"Alex actually received the MIBG treatment three times, back in 1999 and 2000," Scott told me. "It added four to five years onto her life and brought our family down to Philadelphia from Connecticut.

"It was because of this treatment that Alex started her lemonade stand, which, as you may know, has become a leader in the childhood-cancer world."

Kyler underwent MIBG last week at CHOP, which will attempt to bill Medicaid for the procedure. He may need additional treatments.

The bill for the first round: $52,868.

"What worries me," says Paul, "is if Kyler gets complications from MIBG, HealthAmerica might not cover them, since they didn't approve MIBG in the first place."

So the fight to save Kyler's life continues.

Thanks to Daily News readers, at least the VanNockers no longer feel like they're in it alone.

E-mail polaner@phillynews.com or call 215-854-2217. For recent columns:

http://go.philly.com/polaneczky. Read Ronnie's blog at http://go.philly.com/ronnieblog.

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