Archive for December 25th, 2009

The Boy with the Perfect Heart

December 25, 2009 @ 12:37 pm | Filed under:

Tonight I am thinking of Billy, as I do this time every year.

Billy was 15 when we met him, a tall, sturdy boy, athletic, strong. He was a sophomore in high school and an adventure rollerblader, the kind of fearless kid who rides down stair rails on his skates. We met him on the cancer ward at the children’s hospital. Jane was two, pretty deep into her high-dose chemo regimen for leukemia at that point. Billy had leukemia too.

Jane and Billy were roommates several times during the nine months of Jane’s in-patient chemo protocol. I will never forget the sight of big, strapping Billy sitting patiently beside my tiny little toddler on a hospital chair, entertaining her with fantastic playdough creations. To this day the smell of playdough brings to my mind the picture of Billy and Jane, her giggles, his affectionate grin, their two bald heads.

Billy had a different form of leukemia than Jane’s, one that could be harder to fight. His chemo regimen was pretty intense and he had months of terrible sickness. Throughout the ordeal he was goodnatured and upbeat, sweet to his mother, charming to the nurses. He looked forward to turning sixteen and learning to drive; he had been saving for a Corvette since he was 12 years old and had managed to squirrel away over a thousand dollars so far.

One day there was a ripple of excitement in the cancer ward. A radio station was having a contest: whoever could get the most famous celebrity to call in on his or her behalf would win…a Corvette. We were wild for Billy to win, all of us, the patients, parents, doctors, nurses. Everyone wracked their brains for any kind of celebrity contacts who might be persuaded to call in on Billy’s behalf. Scott had met Mark Hamill a couple of times in the Batman offices—these were the days when Scott was a Batman editor and Mark was doing the voice of the Joker for the animated show. If you called Scott at work and got his voice mail, it was Mark Hamill’s Joker voice you heard on the message.

So Scott put a call in, but Mark was away and couldn’t be reached. No matter: a nurse came running in with the exciting news that somebody in the lab knew somebody who worked on the set of Frasier. Kelsey Grammar had agreed to call in for Billy.

We huddled around the radio, waiting anxiously for the call. Billy was calm, grinning, enjoying the fun, while his mother and most of the other adults were jittery with hopeful anticipation. The big moment arrived: the radio host said he had a very special caller on the line. “Can you hear me, sir?” he asked.

And that rich and mellifluous voice rolled out the words we all knew so well from his show: “I’m listening.”

We screamed with laughter—then hushed, suddenly, because there was a second voice chiming in, dapper and sprightly: “Hello hello!”

“NILES!” shouted Billy’s mother, Jen. It was true: Kelsey Grammar and David Hyde Pierce were on the line. Billy was a shoo-in for that Corvette, for sure.

Alas, it was not to be. Kelsey and David were out-celebritied by one Mr. Paul Newman, who called in on behalf of the guy who worked as the cook at Newman’s Hole in the Wall Gang camp, a summer camp for kids with cancer. Jen shrugged and said, “Well, yeah. I mean, Paul Newman.”

“Really?” asked Billy. “Who the heck is Paul Newman?”

He took his loss in good stride, remarking that if he had to lose, he was glad it was to a guy who worked at that camp. Besides, he had his Corvette savings fund. Some of us mothers may have grumbled a bit, ahem, feeling that if only Luke Skywalker had been in town he might have given Butch Cassidy a run for his money. (But probably not. I mean, Paul Newman.) But Billy was a great sport, and the whole thing was a bright spot in a string of difficult, chemo-filled days.

The only time I ever heard Billy break down was the day the doctors told him one of his chemo drugs had seriously and irreparably damaged his heart. Jane’s protocol, too, involved high doses of this very dangerous drug, but she was one of the fortunate ones; her heart suffered no ill effects from it. But Billy…Billy’s heart had taken a blow. Jane and I were on the other side of a hospital curtain, watching Blue’s Clues on her video monitor, when the doctors broke the news. You try not to listen, but those rooms are tiny and even with the curtain pulled, you are sitting practically side by side. Billy was told his days of adventure skating were behind him, and he would have to avoid contact sports. On our TV, Steve asked the audience if they had any ideas where he might find the next clue, and in the silence before invisible children told him to check the refrigerator, I overheard the low sobs of a teenaged boy with a broken heart.

But the good news, the great news, was that the poison had worked: Billy’s cancer was gone. Around Christmas time he was jubilantly discharged in remission. He used his Make-a-Wish Foundation wish to take his family on a celebratory cruise, as I recall. I thought it was typically sweet of him to use the wish for something his whole family—mother, father, little brother—could enjoy together.

A day or two before Christmas, Jane and I walked into the hospital playroom and were surprised to discover that the playroom’s ancient, pokey, maddening excuse for a computer had been replaced by a state-of-the-art system, complete with printer and a stack of kids’ games on CD-ROM.

“It’s a present from Billy,” the playroom attendant told me. “He spent his Corvette money. He said the kids here should have a computer that really worked.”

Billy’s cancer was gone, and he hoped never to set foot in that playroom again. He spent his car fund. Even now, a dozen years later, I can’t think about it without tearing up.

And then, months later, his cancer returned. He endured a transplant, and then graft-versus-host disease, and finally, after years of fighting the valiant fight, Billy’s body had had enough. He was 19 when he died.

Every year at Christmas I think about him, about that gift he gave the kids in the playroom, the endless stream of children whose lives have been turned upside down and whose days and nights are filled with pain and sickness and needle-sticks and tedium. I think about the 12-year-old kid deciding to start saving up for a red Corvette, and the 16-year-old who was looking forward to learning to drive.

Mostly I remember the big kid shaping playdough monsters for my little girl, going rrrahr as the dinosaur stalked the blue bunny rabbit, and Jane convulsing with giggles. “More, more!”

His cardiac muscle may have given out in the end, but there was nothing, nothing in the world stronger than Billy’s heart.