More children today are surviving pediatric cancer than in the last 50 years, but the lasting cognitive, physical and social impacts linger.
The Shining Stars Foundation provides year-round recreational programs for children with pediatric cancer and their families across the Rocky Mountains.
Rosemary White, the director of operations, said their programs offer children a chance to connect with others sharing the same diagnosis.
White spoke with Aspen Public Radio’s Regan Mertz about how the foundation is addressing the needs of pediatric cancer patients and their families.
The conversation below has been edited for clarity and length.
Regan Mertz: Children with cancer and other life-threatening illnesses may not get a lot of time outside or even with their peers.
Why was this something the foundation decided to focus on 25 years ago?
Rosemary White: We definitely see children with cancer nowadays; the treatments are very successful, right? The survival rates have increased tenfold, and it's amazing, thanks to medical research.
But these treatments are very intense, and they often leave some long-term effects on these kids — cognition issues. When you are faced with that as a child, a lot of your social-emotional regulation is thrown out of whack. So, getting together with kids who know that battle, who know what they're going through, it makes such a difference.
Mertz: What are the outcomes you're looking for — for these sorts of outdoor recreational opportunities?
White: We see these kids get off the bus super nervous. They don't know many of the kids that they travel with. And then we see this transformation during the week, where they're opening up, they're talking about their cancer. They're not wearing their wigs during the week. They're comfortable with their bald heads because they see their roommate take their wig off, and they're like, “Okay, well, maybe I could do that too.” And then we see this transformation of their confidence bloom throughout the week.
The economic effects of cancer can be very devastating to a family. A lot of times, one of the parents has to quit their job, so they can stay home, focus on the care. We find that recreation is very expensive nowadays.
Any sort of vacation with their entire family — so they can heal together — is put on the back burner to focus on the immediate economic needs, medical needs.
So, I think community building and confidence building are some of the main things we look for when we evaluate the success of our programs.
Mertz: I'm wondering too if there's one child that you remember who has been impacted by this program? If there's just one story that comes to mind?
White: Of course, of course. Whenever I'm asked this question, I always think of one of our shining stars. His name was Kevin. His cousin had cancer and came as a camper back in 2007. He heard about this program, saw his cousin was going there, and he was, I think, 15 years old. And he was like, “I want to come and teach kids how to ski,” and we said, “Well, Kevin, you kind of have a ways, like you're as old as the campers. I don't think you're going to come and be an instructor just yet.”
But he stayed the course. He did his due diligence. He got his instructor certifications, and he did. He finally came as an instructor.
A few years into coming as an instructor, he developed a brain tumor. And he came back a few years later as a shining star, as a camper, and took advantage of the adaptive techniques, keeping him able to ski for years.
He fought his brain tumor for about six years, and it was coming to a point where everyone was realizing that the tumor was going to win in this fight.
He skied Buttermilk a few days before he passed, in a sit-ski, and surrounded by his family and all the people that really loved him, and it was beautiful. And every year, his family continues to come back. His parents are at Buttermilk right now with his sister, and his little nephew is there with us, and his energy is still there with us and his love. And now, his family gets to stay and provide that community and that support and that love to all these new kids. I'm sure they see their son in them and just stay so connected to the mission that he believed so deeply in.
Mertz: Thank you for sharing that. And I'm sorry — very beautifully put.
Where do you see the future going with the organization over the next 25 to 50 years? What are your goals there?
White: We're looking forward to growing our young adult program. The need for that program has just grown and grown over the years. We get so many requests for new kids who want to be involved in that program. Again, the survival rate of pediatric cancer has increased for so many years, so I think that there's a lot more survivors, which is incredible. But the need for supporting those kids into adulthood is something that we've really, as a foundation, focused on over the last few years.
Mertz: Yeah, absolutely. Thank you so much for coming in.
White: Of course. Thank you for having us.
Support for this Nonprofit Spotlight series comes from the Aspen Community Foundation.
