Ronnie Polaneczky: 'It's all right, buddy, you can sleep'

Kyler VanNocker died Sunday after a hard fight against neuroblastoma and his insurance company.
Kyler VanNocker died Sunday after a hard fight against neuroblastoma and his insurance company. (Curt Hudson)
Posted: September 07, 2010

KYLER VANNOCKER died last weekend at Children's Hospital of Philadelphia, enveloped in so much love it seemed impossible its power wouldn't pull him through his latest medical crisis.

But Kyler's lungs, damaged by the treatment he'd received over the past three years for neuroblastoma, could no longer support his small body. By Sunday, it was clear to his parents, Paul and Maria, and to his extraordinary medical team at CHOP, that this was to be his final setback.

Calls were made, and loved ones made a surreal race, through Sunday's glorious sunshine, to Kyler's bedside in the ICU, to weep goodbyes.

Still, he hung on - sedated yet somehow aware - until Paul and Maria realized what he was waiting for.

Ever since his diagnosis, whenever Kyler got tired, he wouldn't allow himself to fall asleep unless his parents gave him the OK. Once they said, "It's all right, buddy, you can sleep," he felt safe enough to drift off.

So on Sunday, they repeated the ritual of comfort. They gently reassured Kyler it was OK to let go.

At 4:30 p.m., for the last time, he did. He was three months shy of his sixth birthday.

"We knew this day was coming," Paul told me yesterday, when I reached him at the Edgewater Park, N.J., home that he and Maria also share with son Kaden, 7, and daughter Anelise, 4. He sounded so tired. He and Maria had just finalized funeral arrangements for the child they called their "little old soul."

"Each time he got sick, we hoped we could have just one more day. We're grateful we had three years of 'one more days.' "

As readers may recall from a column I wrote last December, Kyler almost didn't get some of those extra days. Back then, Paul and Maria were in an appalling tug-of-war with HealthAmerica, their Harrisburg-based insurance company.

After a period of remission from neurobolastoma - a rare and deadly cancer of the nervous system that creates tumors throughout the body - Kyler's cancer had come roaring back. He had an especially lethal form of the disease, and at that point the only thing that would extend his life was something called MIBG therapy.

HealthAmerica refused to pay for the treatment, in which a radioactive drug, delivered via IV, travels to tumor sites, slamming them with radiation.

I won't numb you with the despicable details of HealthAmerica's decision, except to say that I agree that the company acted arbitrarily, capriciously and abusively - to quote from the lawsuit that the VanNockers subsequently filed against the company on Kyler's behalf.

Since Kyler's tumors were spreading rapidly, there wasn't time to wait for the lawsuit's outcome. So CHOP proceeded with the MIBG, even though the hospital didn't know whether or how it would be reimbursed the thousands of dollars the therapy cost.

Kyler responded beautifully to treatment and was soon zipping around the schoolyard again with friends. And the VanNockers, already bankrupt by out-of-pocket medical expenses, hoped that their lawsuit would eventually shame HealthAmerica into paying for the treatment that had shrunk their son's tumors and clearly extended his life.

Suffice to say, it's not possible to shame the shameless. HealthAmerica never paid for Kyler's MIBG. Instead, the tab was partially covered by Medicaid of New Jersey; CHOP forgave the remainder of the debt.

This is why Coventry Health Care, parent company of HealthAmerica (which refused comment for this column) was able to report such juicy fourth-quarter earnings - up 24 percent - in the same month that the VanNockers filed their lawsuit.

When you're able to shift costs off your books and onto someone else's, your bottom line swells right before your eyes.

Drained as he was yesterday by grief, Paul was still able to express outrage at the immorality of the American health-care machine, in which the expertise of world-renowned doctors - like those who treated Kyler - is routinely usurped by insurance bureaucrats responsible first and foremost to shareholders, not to patients.

"Because of the lawsuit, I have had to behave and keep quiet about what I think," lest he jeopardize Kyler's case in any way, he said. "Well, I don't have to keep quiet anymore. I am a pissed-off dad whose son's life was made hell by bean-counters who got in the way again and again of what was right."

What breaks my heart is that the VanNockers, knowing from the get-go that Kyler's "one more days" were numbered, had to spend so many of them fighting HealthAmerica.

And what makes me thankful is how Daily News readers (especially attorney David Senoff, who represented, gratis, the Vannockers against HealthAmerica) responded to Kyler's plight with prayers, donations and astounding acts of kindness.

Your generosity will never be forgotten. On the VanNockers behalf, I thank you all.

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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