Child Life Specialists: A “Slime Queen’s” Best Friend
Piper Lyon was only a week-and-a-half into kindergarten when she started getting sick.
First, it was a chest cold and a fever, easily attributed to new kids and new germs. But next came coughing fits, extreme fatigue and a tonsil so swollen she had trouble talking. As her parents, Matt and Kim Lyon, shuttled her between doctors, Piper kept getting worse, and her stomach and back started hurting, too.
“They thought it was a virus and then tonsillitis. We were doing everything the doctors told us to do, but we weren’t getting anywhere. We took her to another hospital over Labor Day weekend, but they didn’t want to do a CT scan, and her tonsillectomy was pushed back a week,” Kim recalls. “Finally, we just said, ‘We’re taking her to Riley and we’re going to figure this out.’”
Piper was scheduled to see an otolaryngologist (ear, nose and throat doctor) at Riley Hospital for Children at Indiana University Health on a Monday in early September, but by 2 a.m. that Sunday, she was in so much pain, her parents took her to the Riley Emergency Room. A CT scan showed Piper’s situation was far more serious than a simple case of tonsillitis. They found several masses in Piper’s tonsils, chest and abdomen.
“It was a horrifying. She had a giant mass in her throat with just a tiny spot to breathe, and the mass in her chest had partially collapsed one of her lungs and was closing off her windpipe,” Kim says. “She had little tumors all the way around her stomach and kidneys, too.”
Piper was diagnosed with Burkitt Lymphoma, a very aggressive but very treatable form of cancer. That treatment has greatly improved over the last 10 to 15 years thanks to Riley’s participation in an international clinical trial focused on the rare cancer. Still, the regimen is intense, with multiple, 20-hour chemotherapy infusions that require patients remain hospitalized.
Thankfully, Piper quickly adapted to life in the oncology unit, bonding with the Pet Therapy dogs (especially those who snuggled with her) and looking forward to art classes and play time. She earned the title of “Slime Queen” for all of her colorful, gooey creations.
“Piper is just one of the most sweet-natured kids,” says Melissa Henson, a Riley Cancer Center Child Life Specialist whom Piper calls her “best friend” at Riley. “She would always tell me what the coolest toys were and what crafts we should be making.”
By the time the chemo started causing Piper’s long, blond hair to fall out, she had already been well-prepared by Melissa, who shared the story of the Hair Fairy. Much like the Tooth Fairy, the Hair Fairy collects hair from children and leaves a special surprise behind. Then she uses the discarded locks to make nests for baby bunnies.
The Lyon family leaned on Melissa again when, a few days after Christmas, a life-threatening fungal infection was detected in Piper’s abdomen, requiring immediate surgery. Melissa was there to carry Piper into the operating room.
“That’s a difficult thing for parents, having to watch their child walk down the hall away from them,” Melissa says. “We gently transitioned Piper from her dad’s arms into mine, and I carried her back there, holding her as she fell asleep.”
Piper’s appendix had burst, but, luckily, the fungal infection had stayed inside and was removed. Piper was released from Riley a few days later and she was officially declared cancer-free in early February.
Piper already has plans to return to Riley, but she has some growing up to do first.
“I want to be a nurse who works with kids,” she says. “I can’t wait to come back and work at Riley!"
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