Kaeli Beyer was playing doctor in her parents’ living room with her twin brother Aidan. But it was not the kind of little-kid role play that other four-year-olds perform. Kaeli Beyer’s version of playing doctor is based on experience – painful experience.
Since last October, hers has been a world teeming with doctors and nurses and needles and IV drips and long overnight hospital stays that no one her age should have to endure. So when Kaeli Beyer plays doctor, she talks to Aidan of “ports” and needles. She wears a pair of oversize latex gloves that dangle from her fingers like blue icicles. Surgical masks are scattered around the room, along with a long, thin plastic tube – the kind that usually hangs from an IV tree. Kaeli twists it around her body like it was a toy.
Her once-luxurious blonde hair is growing back now. It’s an encouraging sign that poses special problems for a little girl who for the past several months has taken sustenance – and offered it to others – by having her head shaved and inviting friends and family and doctors and nurses to draw pictures on her shiny bald head.
Welcome to Kaeli’s world, a world where a little girl has made child’s play of her battle with cancer.
Kaeli’s parents, Jean and Chris Beyer, missed being childhood sweethearts by about an eighth of a mile. They were New Paltz neighbors with lots of friends in common who didn’t meet until 2006 on the Internet.
Jean is an occupational therapist who stopped practicing the moment Kaeli began undergoing treatment. Chris is a sergeant first class in the US Army, currently stationed in Yorktown, Pennsylvania. After their twins were born in California, where Chris was then stationed, the family returned to New Paltz. They now live with Chris’s parents in the home where Chris grew up on bucolic O’Rourke Drive.
The trouble started last September, when Kaeli began having pain during urination. Follow-up tests proved inconclusive or misleading. When her abdomen became distended and fever struck, Jean took her to the emergency room. Kaeli was immediately dispatched to Maria Fareri Children’s Hospital at Westchester Medical Center. Thus began the agonizing wait for a diagnosis that could only be accomplished through painful physical examination and surgical exploration.
By early October, the family learned that Kaeli had what’s called Diffuse Large B-Cell Lymphoma. It’s the most common form of lymphoma in adults, but extremely rare in children. Jean recalls how she cried with relief when she finally learned the diagnosis: “Now I knew what we were up against – what we had to fight.”
That first hospitalization lasted a month. It was hard on Kaeli and it was hard on Aidan, who had never been separated from his twin before.
The first course of treatment failed to remove all the cancer. Kaeli’s subsequent program requires twice-weekly trips to the hospital, plus a weeklong stay for chemotherapy every month. Last winter’s wretched weather and Chris’s eight-hour drive back and forth from Pennsylvania on weekends only compounded the difficulties that the family faced. But as Jean says, “You get into a routine. You develop friends.” And you discover your song.
Hoda Kotb is a co-anchor of the Today Show and a breast cancer survivor. She has said that cancer was difficult enough to experience as an adult; imagining what it must be like for children was all but impossible for her. Music had been a great source of comfort for her, so she set about producing a song dedicated to funding pediatric cancer research while providing a musical experience for children suffering from the disease. The result was a mashup of two then-and-now songs: “True Colors” by Cyndi Lauper and “Brave” by Sara Bareilles.
The song, “Truly Brave,” became Kaeli’s go-to song whenever she was facing a medical crisis. The song’s accompanying video features bald-headed children like herself scurrying about the Children’s Hospital of Philadelphia. “She sees other kids with cancer, and it helps,” Jean says.
Helping and being helped have become major themes for the family. That’s partly where the idea came when Kaeli’s hair began to fall out. “The video helped her come to terms with losing her hair,” Jean says. “She didn’t like it, but she came to terms with what needed to be done.”
It also gave her the idea to shave her head on her birthday in January, so that, like one of the kids in the video, others could decorate her head with drawings – of hummingbirds, rainbows, mermaids. It was a typically Kaeli way to meet her challenges: by transforming a bad situation into something more hopeful.
Kaeli’s condition is itself more hopeful, Jean says. Her first post-chemo CT scan showed that there was no active cancer apparent in her abdomen and none had migrated, as lymphoma can, to other parts of her body.
Chris Beyer has seen his daughter become what he calls an “ambassador of hope” among her fellow cancer patients. She and her best friend Anna frequently team up to cheer up and reassure incoming patients twice and three times their ages. “She helps these kids,” he says. “It’s really something,” wonder resounding in his voice.
Kaeli’s willingness to help other kids got Chris asking how he and Jean and their extended family could do the same – not just for Kaeli, but also for all those other little bald-headed kids facing the unknown every day at Maria Fareri. “That’s the question we asked ourselves: How do we help? How do we build a legacy out of Kaeli’s courage and strength?”
The family’s answer is the KaeliStrong Foundation, a support group aimed at providing funds specifically for children with Diffuse Large B-Cell Lymphoma in the region. Even the best health insurance plans don’t cover incidental costs of travel, food and babysitting needs. “Even mortgage and car payments,” Chris says. Jean says that she has seen children at Maria Fareri who spend long stints alone, if only because their parents have to work. The foundation is an attempt to provide the economic help that could allow those parents more time with their children.
It’s really very simple, Chris says. The need is everywhere, “and nobody does this alone.”
The foundation will sponsor a fundraiser at Novella’s in New Paltz on July 18. Visit www.kaelistrong.org for more information.