Living with joy – and cancer | AspenTimes.com

Living with joy – and cancer

Kids from the Shining Stars program jump all at once to see who can create the biggest splash. The swimming session was a part of the Shining Stars Foundation's summer program. (Patrick Ghidossi/The Aspen Times)

ASPEN – Watch 7-year-old Haley float on her back in the Inn at Aspen pool, water wings on her arms just right, and it’s the perfect summer scene.

Inside the hotel, all 6-year-old Sam wants to know is where the gym is; the rest of the boys are already there.

Andrue, tousled brown hair flopping over his eyes, asks for a mere five minutes on the computer in the lobby. Chances are he wants to sneak in a video game before the dinner bell rings.

It could be an ordinary day in the life of an ordinary kid on an ordinary summer vacation. Or, it could be an overnight camp, the type where kids study science or nature or sports.

But for Haley, Sam and Andrue, their week-long stay in Aspen is anything but ordinary, and they will learn far more than any science, nature or sports curriculum could offer.

Haley suffers from iron overload syndrome, Sam has Burkitt’s lymphoma and Andrue is fighting leukemia. They are from across Colorado but have joined in Aspen as part of the Shining Stars Foundation’s annual summer adventure program. It is the trip of a lifetime for these three, and the 14 other kids with cancer and other life-threatening diseases – they will spend day and night being ordinary kids.

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“Look at that,” said Dr. Larry McCleary, pointing to Haley floating happily in the water. “To be able to come out here and just do the things other kids do …

“If we can push these kids out of their comfort zone, but still have them succeed, we’ve done our job.”

Of course, the reality of these kids’ health is never far from McCleary’s mind. In fact, the Shining Stars Foundation – which also hosts a “Winter Games” in which about 60 kids from around the country visit Aspen for a week of skiing, skating and recreating in the snow – travels with its own medical staff. (McCleary was the former head of neurosurgery at The Children’s Hospital in Denver.)

The reason is simple: Cancer doesn’t take a vacation.

“It’s pretty amazing how far medical science has come. Years ago, these kids would be in a hospital right now. Today, they’re here living life with cancer,” said Shining Stars founder and executive director Kathy Gingery, explaining that chemotherapy, prescription regimes and the like happen every day during the kids’ Aspen adventure, which is tailored so that no participant misses out on the fun.

“We are honored to be able to do this for these kids. I learn something from them every day.”

A glance at the week’s schedule offers many chances for Gingery to learn from the kids. For example, today begins with breakfast at 7:30 a.m. followed by a morning at the Aspen Center for Environmental Studies and a picnic lunch. The afternoon activity is a fishing excursion, with dinner and swimming in the evening. Sunday will be much the same, as will Monday.

Not a moment is wasted. The kids who get the privilege of being part of the Shining Stars Foundation summer adventure program – most are referred by doctors and nurses – know better than to waste precious moments. They know it’s important to make connections, and this week allows that to happen for them.

“These kids have had a very different life than most kids; they spend each day wondering, ‘Will I live to be another day older?'” said McCleary, noting that for many of these kids, much of their lives have been spent in hospital rooms. “Oftentimes they aren’t socialized, they aren’t used to just being a kid, they haven’t learned all the things most kids learn. There can be a huge void there.”

Teaching life lessons is one goal of the foundation, along with providing opportunities through recreation for these sick kids. It’s not always easy, as the tendency is to spoil and not be strict with kids who are suffering from cancer.

“They have rules. It would be a disservice to them not to help them learn to make good decisions. But we have fun. We have a lot of fun,” said Gingery, crediting Aspen and the Roaring Fork Valley’s generosity with providing the chance for these kids to have so much fun, as there is no cost to families.

Seeing the camaraderie after just a few short days together, it’s obvious Gingery knows what she’s talking about. As do all of those who volunteer for the foundation; as do the kids and families who have been part of any Shining Stars program.

“Hope is a huge part of our mission,” she said. “We want these kids and their families to learn how to live with cancer and still have joy. We help provide that joy.”

jmgovern@aspentimes.com