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Former wish kids tell how Make-A-Wish helped them face their life-threatening situations
Wednesday, September 17, 2008

You'd be pretty hard-pressed to find a Pittsburgher who hasn't heard of the Make-A-Wish Foundation or the fabulous Disney trips, shopping sprees and celebrity get-togethers the nonprofit organization arranges for seriously sick children each year. In the past year the local chapter -- which this month kicked off a yearlong 25th anniversary celebration -- granted more than 700 wishes valued at $2.4 million.

But these wishes are really last wishes, right? Wrong. You're harboring the same misconceptions Connie and Steve Sluzynsky had when their daughter, Meghan, was diagnosed at age 8 with leukemia, and the foundation kindly came knocking:

"We didn't want it," recalls Mrs. Sluzynsky of Monaca. "We thought, that's a terminal thing."

It's a common response that clearly vexes Judy Stone, president and CEO of Make-A-Wish Foundation of Greater Pennsylvania and Southern West Virginia. "It's an uphill battle," she says, sighing.

Truth is, while an illness has to be life-threatening for a child to qualify for a wish, it's the diagnosis and not the prognosis that prompts a Make-A-Wish referral. A whopping 82 percent of the nearly 10,000 kids the Pittsburgh-area chapter has granted wishes to since 1983 are still living and have gone on to graduate from high school or college, get married and have children.

Meghan is a perfect example. Now 18 and a freshman at John Carroll University in Cleveland, she was declared "cured" by her doctors last month.

Much of that can be attributed to better diagnoses, medical treatments and drugs for childhood diseases. (Survival rates in youngsters with cancer, and leukemia in particular, which is the most common illness in wish kids, have jumped from 53 percent to 85 percent in North America in the past 30 years.)

Don't discount the recuperative power of positive thinking. What Make-A-Wish is really selling, says Joanne Weiss of Ross, whose son, Kurt, was granted a wish in 1989 after being diagnosed with an aggressive form of bone cancer, is hope.

"It gave us courage to face whatever was going to happen next," she says.

In Kurt's case, that included several years of chemotherapy, more than 30 operations, an experimental stem cell treatment and the eventual amputation of his right leg.

Here, three Make-A-Wish "Then and Now Kids," including Meghan and Kurt, who just finished an orthopedic surgery residency at Montefiore Hospital in Oakland, recall their wishes and how the experience affected their recoveries.

It was, in a word, life-changing.

Magic on a football field

Few things make a kid grow up faster than coming face-to-face with his own mortality. Yet that's exactly how Kurt Weiss spent most of his time at North Hills High School. In spring of his freshman year, he noticed he was losing a step while running and that a lump on his shin never stopped hurting. Doctors told him he had osteosarcoma and that if the cancer hadn't spread to his lungs, there was a 65 percent chance he'd be dead in five years.

A biopsy, though, confirmed it had. Ten weeks of chemo was ordered, followed by leg surgery and then more chemo. But the cancer was so aggressive that Kurt and his parents a year later decided to pursue an experimental immune therapy in Texas that his sister, Gretchen, had read about in the newspaper.

After his initial diagnosis, Kurt did what he could to live a "normal" teenage life. No longer able to play sports, he turned to music. He got so into his tenor sax that when Make-A-Wish approached him shortly after he started chemo, he decided to build a wish that combined his love for the instrument with his affection for the University of Notre Dame, where his sister went to school. How about letting him play with the Band of the Fighting Irish at whatever bowl game Notre Dame happened to be invited to that year?

It was a bold request, considering the season had just started. Yet, just as sure as the teen had no intention of dying, he was equally sure his team would claim a national title.

That November, Make-A-Wish volunteers presented him with a brand-new silver tenor sax handmade by the Selmer Co. in Paris. Then they waited to see which bowl game the Fighting Irish would play.

Notre Dame ended up in the 1990 Orange Bowl, so on New Year's Day, with his family rooting from the sidelines, Kurt joined the marching band in Miami. Still in treatment, he wasn't physically well enough to perform at halftime -- that would have to wait until he enrolled at Notre Dame in 1992. But he could entertain the crowd from the stands.

Making such an outrageous wish come true, Kurt says, not only made him forget all the bad stuff but gave him faith in the future.

"The real magic happens afterwards," he says. "Even though I immediately went back to chemotherapy, I realized that life could be good again. If I could somehow survive this, I could go to Notre Dame for real, and that's what happened."

On an equally happy note, the experimental treatment he started in Texas ended up curing his cancer. But the many surgeries on his limb to fight a persistent infection weren't nearly as effective. On Jan. 16, 1996, surgeons amputated his leg about 7 inches above the knee.

But no matter. Fitted with a prosthetic leg, Kurt, now 34, went from Notre Dame to medical school, got married and today has two children. And in 1998, Make-A-Wish initiated a scholarship in his name for wish kids graduating from high school as an expression of the hope he personifies.

"There's no medical reason I should be alive today," he says. "I'm convinced the strongest thing you can give someone is not an operation, but hope."

Swimmers, take your mark!

Meghan Sluzynsky didn't think much of the aches and pains she couldn't seem to shake as a second-grader at Mount Gallitzin Academy in Baden; soccer does that to a kid. But the low-grade fever that stretched on for nearly a month? Blood tests revealed she had acute lymphoblastic leukemia, the most common childhood cancer.

Immediately hospitalized, Meghan began the next day what would turn into three years of chemo. And talk about tough: Although she was lucky to keep her hair, the meds being pumped into her bloodstream via a mediport implanted under her left breast made her alternately nauseous and ravenously hungry while others, she recalls, made her cheeks puffy like a chipmunk's.

"She had to be home-schooled for two years because her immune system was so weak," remembers her mother. "Her brother would ask, 'Is she on that crabby medicine again?' "

Make-A-Wish's offer to "dream the unimaginable" helped lighten those dark days. The vast majority of wish kids dream of a trip to Disney, and initially, Meghan did, too. Ultimately, she decided on an above-ground swimming pool, something she'd seen around the neighborhood and thought was "kinda cool." Within a month, volunteers had dug a hole behind the house.

By then it was October, so the youngster had to wait until the following spring to see it filled with water. But simply knowing it was in her backyard proved a light at the end of a very long tunnel.

"That winter, when the treatment was really heavy, we could talk about pool parties and swimming," says Mrs. Sluzynsky.

"When you're really down, having something to look forward to brightens the day for you," agrees Meghan.

Only time will reveal any long-term effects of her cancer treatment. But even today, 10 years later, she still enjoys the pool Make-A-Wish made possible and ended up a distance swimmer in high school.

This spring, she was one of 11 local high school seniors selected for a 2008 Kurt R. Weiss Scholarship for Wish Kids. She'll use the money to help pay for books at John Carroll, where she plans to study business management.

"I see myself as the CEO of something someday," she says, smiling.

Racing toward a better future

No one could blame Matt Ellis for being upset when he was hospitalized with non-Hodgkin's lymphoma at age 6 in 1989. But the real misery came with chemotherapy, which was always scheduled on a Friday so the first-grader wouldn't miss too much school.

"I'd throw up, like, 70 times a weekend," he recalls.

So it was a welcome distraction when a Make-A-Wish volunteer told him to "wish bigger than a drum set" and think of anything -- anything! -- he might like to do. At the time, Matt was wild about car racing, having watched "Little Al" Unser Jr. follow in his dad's footsteps at the Indy 500. So asking to attend the famous race and meet his hero in person was a given.

It took some doing, but in May 1991, shortly after the North Huntingdon youngster's cancer returned, Matt was on his way to Indianapolis. The family stayed in a hotel room decorated with streamers and checkered flags. The week's activities included trips to museums and the mall and, the day before the race, the chance to watch the traditional "Carburetion Day" practice from a fancy suite on the front straightaway.

"And Marc Summers [from the kids' show 'Double Dare'] was in the next box!" he remembers.

That was followed by a visit to Gasoline Alley, where team reps presented him with a jacket and other racing gear, and he got that much-anticipated face-to-face with Al Jr. who, Matt recalls, treated him like a member of the team.

"It was probably only 10 minutes, but it felt like all day," he says. "Being sick was the furthest thing from my mind."

The excitement continued on race day, when Matt and his family enjoyed a police escort through traffic to their seats on the start/finish line. The only disappointment, and you really couldn't even call it that, was that Unser didn't win. Rick Mears came in first.

Matt would once again relapse in eighth grade, requiring a stem cell transplant. Within 15 days, he was on his way to a full recovery and after graduation from Norwin High School received a Weiss scholarship. Recently married to wife Allison, whom he met while a senior at Bucknell University, he's now a civil engineer with Clark Construction in Bethesda, Md. And he's five years cancer-free.

To this day, Matt says, he still thinks about his Make-A-Wish experience, as well as the other activities the foundation offers wish kids, such as holiday parties, sporting events and lunches with local celebrities.

When kids are sick, he explains, they don't have much choice in what they have to endure, be it endless nausea, painful treatments like spinal taps or one more doctor's appointment. So to be able to determine your destiny for even one day is priceless.

Make-A-Wish, he says, helps one stay positive. "Kids need that type of reassurance."

For more information on Make-A-Wish Foundation of Greater Pennsylvania and Southern West Virginia, call 1-800-676-9474 or visit www.wishgreaterpa.org.

Gretchen McKay can be reached at gmckay@post-gazette.com or 412-263-1419.
First published on September 17, 2008 at 12:00 am
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