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Young patient kept his focus on living every day
On the day 15-year-old John Wandishin decided to accept his death, he sent an e-mail to his friend Elizabeth Ennis, a junior at a nearby high school in the Baltimore suburbs. She got it during last period, just before she was to perform in a dance concert. ''I got on stage with perfect makeup and perfect everything," she said recently. ''But inside . . ." Her voice trailed off.
John had developed acute leukemia in February 2000 and had received a bone marrow transplant from his sister. He made it through the ulcers and fevers and pain only to relapse. A second transplant from the same sister followed, curing the cancer.
Unfortunately, the transplanted cells went berserk, destroying everything around them like well-armed combatants dropped onto a beachhead of enemies -- a fairly common condition called ''graft-versus-host disease." Gradually John's lungs became so scarred that he needed oxygen continuously. He couldn't get around without his wheelchair. The steroids that treated his lungs puffed up his body and weakened his bones enough that his spine fractured.
In a last-ditch effort, John's parents took him to Johns Hopkins Hospital in the fall of 2004. The doctors offered experimental and potentially toxic therapy but weren't hopeful. After some thought, John decided enough was enough. No more medicine, he said. That's when he e-mailed Elizabeth.
Though he was dying, he wanted to focus on living for his last months. ''Please don't pity me," John wrote.
Then he told Elizabeth about the list. He figured she would understand -- after all, she had had cancer, too. Just after Christmas 2004 John began keeping a yellow pad and jotted down dozens of goals:
Visit the zoo.
Meet Lance Armstrong.
Go to school.
John's school wasn't wheelchair-accessible, but he was determined to go. Players from the football team learned his schedule and between classes carried his wheelchair up and down stairways.
To visit the zoo, John's family carted almost a dozen oxygen tanks along, and John used them all as he soaked in the sights of giraffes, elephants, fish, and reptiles. John's father, whose employer, the US Postal Service, sponsors Armstrong's cycling team, finagled a flag signed by Armstrong, which hung from a place of honor in John's bedroom.
Go to the homecoming dance.
Take Elizabeth to dinner.
John knew he wasn't the most handsome kid but screwed up his courage and asked Elizabeth to homecoming. She had a boyfriend but agreed to go as friends. He pulled his oxygen tank onto the dance floor but felt embarrassed. Elizabeth laughed and started dancing animatedly, almost wildly. ''The less you dance the crazier I'm going to get," she said -- until, finally, John started to move his shoulders with the hip-hop music.
Later he asked her to dinner. John's parents drove to the Candle Light Inn in Catonsville, Md. -- it was their anniversary -- and the couples dined on opposite sides of the restaurant. John's mother remembers the bittersweet feeling of seeing John so happy and, for an evening, so very normal. That dinner, she said, ''meant the world to him."
Elizabeth was always at the top of John's list.
As John got sicker in the spring, his list became simpler.
Make it to ''wing night" at the diner.
See my favorite TV show this week.
The list was a prescription for hope taken in small daily doses. As time grew shorter, he created a new list. He posted it on the family refrigerator.
No yelling at each other.
Don't say anything to someone that you will regret later.
John took an unused bedpan and put it on the dining table. If you cussed, you had to pay a fine into it for being a potty mouth. John convened a family meeting and, in his mother's words, ''whipped us into shape." Life was too short, he said, to waste time fighting. (Months after John's death, the 15-year-old refrigerator broke down, and the first thing put on the new one was the list.)
Several months earlier, I had met John at Camp Sunrise, a camp run by the American Cancer Society where I was a counselor. Though he usually slept hooked up to an oxygen compressor, one night John wanted to sleep outdoors with the others.
At 4 a.m., John woke up. ''I'm sorry," he said to me. ''I did the best I could. But I need to go now." I took him to the infirmary, where he put the oxygen mask on and flipped on the compressor. His breathing slowed. His face relaxed into sleep.
He had stayed with the others as long as he could, then gracefully recognized when it was time to move on.
In his final weeks he began yet another list, regarding his funeral. He wanted to be buried wearing his school ring. He wanted to wear a personalized football jersey. And he wanted his stuffed raccoon, Rusty, in the casket.
Three days before he died, John had a small party at Hooters, his favorite restaurant. Jere Hoadley, a counselor from the summer camp, had taken John to some ballgames (another item from the list). Watching John struggle to breathe, Jere felt a visceral desire. ''I wish I could lend him my body," Jere said, ''so he could have partied for one last day."
After John died, his mother, Kathy, made her own list. This fall, she flew on an airplane for the first time to visit a friend in California. John would have been proud, she said.
Dr. Darshak Sanghavi, an assistant professor of pediatrics at UMass Medical School, can be reached at http://www.darshaksanghavi.com/.