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.
