How Children’s Hospitals Are Helping Kids With Cancer Be Kids | Hospitals
Daisy Walsh didn’t talk to anyone about her cancer. The then 6-year-old in Aurora, Colorado, knew she had a golf ball-sized tumor in her brain, but on that topic, she kept mum. What was there to say?
But when she saw a picture of her new pen pal, Maggi, the dialogue changed. “It was love at first sight,” remembers her mom, Natalie Walsh. In letters, Daisy began writing about topics as grave as the size and location of her tumor and as ordinary as what she did in school. Maggi, as it turned out, was a good listener. She was also a dog.
When Daisy Walsh, who has medulloblastoma, saw a photo of her four-legged pen pal, Maggi, “it was love at first sight,” Daisy’s mom says.(Natalie Walsh)
Daisy and Maggi are among the more than 150 animal-child pairs that have connected through Children’s Hospital Colorado’s Youth and Pet Survivors, or YAPS, program, since its inception in 2001. The one-of-a-kind pen-pal initiative aims to bring the benefts of pet therapy to pediatric oncology patients – whose immune immune systems are often too weak to meet animals in person – by pairing them with dogs and cats that have survived cancer or other serious illnesses. “The dog can share with a child what it was like to get chemo or radiation or lose their hair or whatever it was because animals have similar side effects as kids from getting treated,” explains Anne Ingalls Gillespie, a nurse in the hospital’s Center for Cancer and Blood Disorders who founded the YAPS program. Maggi, for example, had undergone surgery to remove a tumor in her jaw.
“Daisy really felt like they had a lot in common,” says Walsh, whose daughter underwent a 10-hour surgery and nearly a year of chemotherapy to treat her medulloblastoma, the most common kind of malignant childhood brain tumor, which recurred in September. Daisy, now 9, continues to correspond at least monthly with Maggi, a 12-year-old yellow lab who stamps all her letters with a paw print.
“It’s helped [Daisy] to look forward to something instead of chemo and hospital visits and not feeling well,” Walsh says. “It’s like medicine in the mail.”
And the medicine works, according to surveys comparing the benefits of traditional pet therapy to those of the YAPS program. “The sense of companionship, [reduction of] fear, pleasure – those benefits were the same sending and receiving letters as actually meeting an animal and hugging an animal in person,” says Gillespie, who’s working to establish YAPS chapters in children’s hospitals across the country.
Daisy Walsh, 9, spills what’s on her mind in a recent letter to her canine pen pal, Maggi. (Natalie Walsh)
Connie Fredman, for one, hopes she’s successful. As the human behind several dog pen pals in Fort Collins, Colorado – a role that requires undergoing the hospital’s volunteer screening process – Fredman says the program is exceptionally rewarding for all creatures involved. She has owned two YAPS participants with three legs and one that survived bone cancer. “These dogs are … going on with their lives like they’re normal dogs, and they don’t let their disabilities inhibit them in any way – and these kids are just as resilient,” she says. “The dogs bring out the best of these kids.”
That’s been the case for Daisy, who visits Maggi a few times a year at her home in Boulder, Colorado, when the girl’s immune system is strong enough. “When Daisy is with Maggi, I see how happy she is; I see how carefree she is; how trusting she is,” says Walsh, who’s become close with Maggi’s human “mom.” “I see how she opens herself up to feel Maggi’s love.”
Disguising Therapy as Fun
The YAPS program is just one of many offerings at children’s hospitals nationwide designed to make life – and outcomes – better for kids with serious illnesses like cancer. Such initiatives are increasingly embraced as five-year survival rates for many childhood cancers have soared to percentages in the 80s and 90s, according to the American Cancer Society. In the past, “the prospect for long-term survival was so remote that plans for the future … were abandoned,” wrote the authors of a 2008 paper in the journal Current Oncology Report.
Today, children’s hospitals across the country value child life specialists, for example – professionals essentially trained in disguising therapy as fun. “We exist in hospitals to normalize the hospital environment by decreasing anxiety and increasing coping skills,” explains Melissa Sexton, the child life special events coordinator at Riley Hospital for Children at Indiana University Health.
For example, the specialists – many of whom have master’s-level backgrounds in child development, education or psychology – may use dolls and fake medical equipment to explain a procedure; art to foster creative freedom in an environment where kids have little; or celebrity guests to allow a mental escape. “Forgetting for just a little bit that they are in the hospital – that’s big part of how [child life teams] are normalizing the hospital setting,” says Sexton, who recently coordinated a “Frozen”-themed prom – complete with an in-house spa day and dress-shopping extravaganza – for Riley’s young cancer patients.
Child life programs aren’t just a welcome break from the structure, sterility and scary nature of the hospital; they also boost outcomes, since they consider the needs of the whole child – not just what will treat the illness, Sexton says. One study, for example, found that child life specialists helped reduce the need for sedation – and, in turn, helped cut back on health care costs – among kids undergoing radiation for central nervous system tumors. “If you look at any type of research, you realize that outcomes are stronger when patients are compliant with their care and when they have trust in their medical team,” Sexton says.
Here are examples of notable initiatives, like YAPS, being deployed at U.S. children’s hospitals:
Taking the Stress Out of School: Riley Hospital for Children at Indiana University Health
When a child is diagnosed with cancer, the single most stressful aspect for parents is handling that news. “And the next question, 90 percent of the time, is, ‘What about school?'” says Kristin Wikel, a teacher who supervises Riley’s school program.
Riley’s “Bear in the Chair” program helps hospitalized children feel connected to their peers in school.
(Riley Children’s Foundation)
That’s why the hospital employs eight licensed teachers who work with kindergarten through high school patients – an unusual feature since most children’s hospitals work with teachers employed by the local school systems, Wikel says. But the teachers at Riley work with patients’ schools to acquire lesson plans and homework – even sometimes driving to the schools themselves to pick up, say, a textbook – and tutor the kids in the hospital. If students are well enough to leave their rooms, they can work with same-aged peers in hospital-based classrooms; if they’re not, they can get tutoring at the bedside. As far as they know, a patient has never been held back in school because of his or her time at Riley, Wikel says. “It’s part of the culture: While you’re here, you will go to school,” says Wikel, noting that this standard helps normalize the hospital experience for young patients whose worlds revolved around school before their diagnoses.
Meantime, they can rest assured that their out-of-hospital peers don’t forget them. In addition to Skyping with classes, Riley’s “Bear in the Chair” program enables kids hospitalized for two weeks or more to have big stuffed bears hold their places at their school desks back home. “Schools get really into it,” Wikel says, adding that bears have been known to attend basketball games, serve detention and wear pigtails. “It takes on the personality of the child.”
Laughter as Medicine: St. Louis Children’s Hospital at Washington University
“Funny” and “childhood cancer” rarely appear in the same sentence, but at St. Louis Children’s Hospital, they take place in the same room. Through the hospital’s Clown Docs program, young patients with cancer and other conditions enjoy visits, jokes, tricks and, of course, laughs, from professional clowns. “Their job is to use humor to distract our patients, and their philosophy is that laughter is the best medicine, says Megan Rennie, the hospital’s child life supervisor.
The theory has legs: One recent qualitative study, for example, found that medical clowns changed children’s perspectives on their hospital visit for the better. Another study found that such entertainers’ presence reduced levels of the hormone cortisol, a marker of stress, in hospitalized children. “[Chemo] can be a really scary and uncomfortable thing to go through, and you can see those kids light up when the clown docs come in,” Rennie says. “What was going to be a really hard day that they were dreading, they’re almost looking forward to it the next time.”
The same might be said for the child life program’s yoga therapist, who helps children relax, learn pain-management techniques and improve motor skills – sometimes by guiding them through poses that mimic their favorite movie characters. “Sometimes other people have been unsuccessful getting [the kids] out of bed,” Rennie says, “and then she comes and they will get out of bed.”
Healing Through Creativity: Mount Sinai Kravis Children’s Hospital
Vismel Marquez, who’s been treated at Mount Sinai for about eight years, co-hosts his first live broadcast at the hospital’s KidZone TV. (Anna Medaris Miller)
Vismel Marquez hears the 30-second countdown, looks up from his seat at a desk and into the lights. Action. “Hi everyone!” the 21-year-old college student from Waterbury, Connecticut, waves into the camera. For the next 30 minutes, Marquez isn’t a patient at Mount Sinai – he’s a TV star. “It’s a little nerve-wracking, but I like it,” Marquez admits after the live broadcast, which he co-hosted with the station’s producer, Lauren Smith, a creative arts therapist.
KidZone TV, a closed-circuit channel that broadcasts three live, interactive shows across the hospital each day, is produced, hosted and viewed by many young patients like Marquez, who’s been treated there for sickle cell anemia since about age 13. While many children’s hospitals have similar channels, KidZone TV stands out for the frequency of its programming, says Diane Rode, who directs the hospital’s Child Life and Creative Arts Therapy Department. That way, she says, they can achieve one of the program’s goals: “To really impact the patient experience” for children and families receiving all levels of care.
Today’s broadcast, for example, took viewers on a prerecorded tour of the Guggenheim and guided them through an art project. Kids across the hospital could participate by creating their own building design with materials dropped off in their rooms before the show and calling in to share what inspired their creations. Other TV programs include game shows – prizes included – and behind-the-scene peeks at various corners of the hospital.
The TV programs benefit members of their young production “staff” like Marquez, too. “We’re not interested in producing videos and material that’s necessarily just for entertainment or about patients and families,” Rode says. “It’s about the creative process.” Her department also publishes a literary magazine of patient poetry, hosts concerts featuring patient bands and produces music videos starring patient singers, actors and rappers.
“If we’re looking to scaffold resilience, we need to have lots of options,” Rode says, “and we need to present them in ways where they can kind of pick and choose and we can provide solutions to their struggle.”