The Boy with the Perfect Heart
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.
sarah says:
Oh you’ve made me cry. Billy has. What a beautiful heart. I swear some people are angels come to live a while on this earth.
On December 25, 2009 at 1:16 pm
Diana says:
I’m also crying after reading this beautiful tribute. My dear friend’s daughter is also a leukemia survivor so this really pulled me in. Thank you for sharing it.
On December 25, 2009 at 1:45 pm
Maureen Hume says:
Yesterday my pre lunch nibbles burnt black on one end while remaining almost raw on the other end. My vol-a-vents leaked their filling and my sister decided to turn up at midday for our arranged 10am brunch.
Following a busy working week these mini disasters almost had me in tears.
Hearing Billy’s story put everything back into crytal clear perspective. I’m a very blessed and lucky person.
On December 25, 2009 at 5:10 pm
Penny in VT says:
I’m sure Billy’s halo is just a little brighter than the ordinary halo… thank you for sharing the story of such a magnificent human being with us.
Blessings
On December 25, 2009 at 5:39 pm
Jamie says:
What a beautiful story, Lissa, and beautifully written too. Thank you.
On December 25, 2009 at 6:09 pm
MelanieB says:
Ah beautiful.
On December 25, 2009 at 6:27 pm
Elizabeth says:
No doubt it’s Saint Billy. Thank you for blessing my family with his story today.
On December 25, 2009 at 6:57 pm
Diane says:
Thank you so much for sharing this story with us. It really puts things in to perspective.
Blessings
Diane
On December 25, 2009 at 7:48 pm
Melissa (Betty and Boo's Mommy) says:
Such a wonderfully touching story to read on Christmas. Thanks so much for sharing this with all of us.
On December 25, 2009 at 7:55 pm
Karen Edmisten says:
A beautiful tribute to a beautiful soul. Thanks.
On December 26, 2009 at 7:36 am
Kimberlee says:
Thanks, Lissa, for sharing. And you know it takes a wise woman who has a true heart herself to see through the play dough and read the stuff a man is made of. And Blessed Christmastide to you and yours!
On December 26, 2009 at 10:54 am
Jen Robinson says:
Wow, Melissa. What a great (if tear-inducing) story. Thanks for sharing it. Wishing you all a wonderful Christmas weekend, and health and happiness in the New Year.
On December 26, 2009 at 1:33 pm
Amy says:
God Bles You for sharing that wonderfully touching story. Brought tears to my eyes.
On December 26, 2009 at 6:19 pm
Love2learn Mom says:
I keep sharing this story with everyone. What an incredible young man – it must have been a privilege to know him. Love the story about the Corvette!
On December 27, 2009 at 3:48 pm
Alice Gunther says:
Wow, this is one of your best posts ever. And that’s saying a lot.
Praying for Billy and his family.
On December 27, 2009 at 8:21 pm
Hannah says:
Thank you for bringing me to tears with such a moving story. Sometimes it feels like God takes some of the best souls early, as if the world is not worthy of them.
On December 27, 2009 at 8:28 pm
Sarah says:
Thank you for sharing this. It took my breath away.
On December 28, 2009 at 6:01 am
Tina says:
Beautiful story to read on the feast of the Holy Family.
On December 28, 2009 at 6:54 am
Cathy T says:
So touching – glad I had kleenex next to my computer. Merry Christmas.
On December 28, 2009 at 2:13 pm
mary grimm says:
You are killing me with that story, Lissa.
The world needs more Billy’s.
God bless him.
much much love,
m
On December 28, 2009 at 9:12 pm
Sue says:
Billy reminds me of one of my favorite songs:
Oh, I believe there are angels among us
Sent down to us from heaven up above
They come to you and me in our darkest hour
To guide us with the light of love
On December 30, 2009 at 6:51 am
Kathy says:
Tearing up.
On December 30, 2009 at 4:47 pm
mary ellicete says:
*sob*….
God rest Billy’s pure good soul. Thanks for sharing about him. I hope his mother can see that. What a testimony.
Thanks Lissa.
mary
On December 31, 2009 at 9:49 am
Kez says:
What a beautiful story and a wonderful young man..
On January 9, 2010 at 12:36 pm
Alison says:
*sob, sob, sniff, sniff…* I love Billy. Thank you so much for sharing his story- it needs to be published.
On January 11, 2010 at 5:57 pm