Amanda Winn thrust the green and orange flashing hula hoops straight out ahead of her like a lion tamer waiting for big cats to leap through flaming circles.
Instead, a mini-cyclone in the form of Marisa Kamp, 9, and her brother, Ethan, 6, hurled blue, green and purple balls at the hoops, sweeping Beth Kurt, MD, into the action, retrieving and lobbing the balls back into play.
It’s kids’ business as usual: No hint that this moment in this place with these people couldn’t have happened five years ago.
Winn, now 27, was diagnosed with stage 4 Hodgkin’s lymphoma, a life-threatening blood cancer, just before her 22nd birthday in 2009. She endured eight months of high-dose chemotherapy, multiple infections and hospital stays at Spectrum Health Helen DeVos Children’s Hospital.
A dream born of isolation
She emerged with a dream born of her own isolation, a dream to make it better for the kids coming after her: A safe place for kids with weak immune systems to come together and play with minimal risk of infection.
Today, almost five years from the day she ended treatment, the dream is reality: They are playing in the Children’s Healing Center, believed to be the nation’s first year-round recreation center for children ages 3 to 18 with weak immune systems.
Its grand opening is scheduled for Sept. 16.
A poster on one wall lists immune system villains: Cancer, auto-immune conditions, bone marrow transplants, kidney diseases, severe burns and bone disorders.
The Center, 1530 Fulton St. SE., Grand Rapids, is in a brick building between Holland Home’s Fulton Manor and Aquinas College. The former respite facility has been transformed into a 7,000-square-foot mosaic of creative space.
It is full of light, color and opportunity against a background of blues, bright greens, yellow and orange in four zones: Exploratory play, active fitness, technology and art and learning.
Dr. Kurt said the center will be a first of its kind.
Five years ago, Marisa Kamp, then 4, had been diagnosed with acute lymphoblastic leukemia. Ethan was 1. They have four other siblings.
Marisa had to be in isolation for almost two-thirds of her treatment at Helen DeVos Children’s Hospital, her mother, Teresa, recalled.
Starved to play with other children, Marisa and another tiny patient found a way to connect with each other and play with their stuffed animals, one on either side of the glass door separating their rooms. Once, Teresa recalled, staff put the girls in gowns and gloves and let them play without the glass barrier.
It was a big day.
Dr. Kurt, a hematologist and oncologist at Helen DeVos Children’s Hospital, was Winn’s oncologist.
She also had an active part in treatment and clinic visits for Marisa, a fourth-grader in a sparkly pink top. Now, she is the center’s medical advisor.
Today, as an impromptu play recruit, no white coat or stethoscope is required: Blue-gray tee, sand pants and high-heeled booties serve very nicely.
She was among the first people Winn told about her idea for a center shortly after she ended treatment. Dr. Kurt calls Winn a visionary, whose intensity and passion came to chemo with her.
“She acted as if chemotherapy was something she was going to fit into her schedule,” Dr. Kurt recalled of the young architect who had just started her first job. “She even brought her laptop into (the) ICU.”
“Amanda is the only person I’ve known to start her own non-profit in her early 20s,” Dr. Kurt said. “For her to be so outward thinking, and other-focused, is amazing.”
Winn is not afraid to fail or hear “no,” Dr. Kurt said. In fact, “no” doesn’t seem to be an option.
“She’ll say, ‘If you’re going to say ‘no’ to this, how about that?’”
Tenacious in treatment and beyond
Dr. Kurt acknowledged thinking the creation of the center “might be an up-hill battle, but believed in Amanda. If she says she’ll do something, she will. She’s tenacious, as she was going through treatment.
“Young adulthood can be a time of figuring out who you are. Her experience with cancer gave her a focus and an opportunity.”
Winn applied that same passion, intensity and mega-watt people connectivity to the Children’s Healing Center idea. She will serve as director for one year.
Created with the involvement and support of Dr. Kurt and many who have been touched by cancer or are involved in children’s health care, it was designed by Winn’s employer, AMDG Architects to come as close as possible to a germ-free space. It has a hospital-grade air-cleaning system, and play and activity areas are scheduled for rigorous cleaning after use.
It has no carpet, fabric or other germ-magnet materials, and those who use the center will be screened at the door to keep out germs.
Dr. Kurt said she has no doubt most referrals will come from Helen DeVos Children’s Hospital.
“The majority of kids will have contact with sub-specialists there, and we want to be sure the kids who come here come at a time that is good for their health,” she said.
Connecting teens is critical
When serious disease strikes teens just as healthy separation from parents is normally beginning and friends can’t relate to what they’re going through, “teens connecting with other teens is critical,” Dr. Kurt said.
Those into technology will find a high-tech space equipped with a large screen for motion-sensor fitness games and movie nights as well as a stage, theatrical area and photo screen for experimenting with film and photography.
“Families will be able to join for a $40 monthly membership,” Winn said. “Scholarships for those who can’t afford to pay will ensure that everyone is able to play.”
It took Winn much longer than she ever thought it would to build foundations under her dream. Not that it was a problem that ever led to serious doubt of success. Just the opposite, in fact.
“Even in the hard times, the process created an even better end game,” Winn said. “This is how it is meant to be.”
What does it all say about dreaming?
“You can try to grip and follow one specific idea, or you can hold it in your open hand and surround yourself with talented people who can help achieve it,” she said. “It’s not what you envision because they bring their own parts to the dream.
“The way you live a life bigger than you imagine is when you realize that life isn’t about yourself. This is not about my journey. It’s about how we can create something together.”