By ELLEN FUTTERMAN
To hear some of the children's songs, visit chausa.org/kidssing.
Having cancer is nothing to sing about, especially if you're a 7-year-old who has spent much of the past four years virtually living in hospitals.
Arianna Dougan sings her song about beating cancer at the ARTSY show at the Jacoby Art Gallery in Alton, Ill.
But singing about her illness is exactly what has helped Arianna "Ari" Dougan, and hundreds of other sick children at SSM Cardinal Glennon Children's Medical Center in St. Louis, cope with so much physical and emotional pain. Through an innovative program called "Kids Rock Cancer," run by Maryville University in Town and Country, Mo., children at SSM Cardinal Glennon can write and record original songs on a CD that they get to keep. Not only is the process a great distraction from needle sticks and chemotherapy, but it also provides an outlet for creativity, fun and a sense of accomplishment.
"When Ari listens to her songs, they really make her feel better," says her mother, Lori Zucker. She explained that Ari was diagnosed at age 3 with stage 4 neuroblastoma, an aggressive cancer that develops in the nerve cells and often spreads to other parts of the body before it is detected.
Unchained melody
"People think that writing and recording these songs are a one-time experience," Zucker says. "But they are so much more because they live on long after the session is over."
The music therapy department at Maryville University started Kids Rock Cancer in November 2009. It drew inspiration from a similar program called "Purple Songs Can Fly" at Texas Children's Cancer and Hematology Centers in Houston. But the main difference is that while the Houston program created an in-house recording center at the hospital, the St. Louis program utilizes a certified music therapist who visits children's bedsides, and works with them one-on-one.
"Many children's hospitals have a music therapist on staff to work with the kids," says Cynthia Briggs, associate professor and director of the music therapy department at Maryville University. "But what is unique about our program is that it is an outreach of the university to (St. Louis-area) children's hospitals."
Board certified music therapist and Maryville University graduate Tracie Heuring-Sandheinrich has been the public face of Kids Rock Cancer since its inception. On most Tuesdays, she arrives at SSM Cardinal Glennon with her laptop, guitar and other instruments in hand. She then consults a counselor at the hospital, who passes along the names of children with cancer and blood disorders that she can visit that day. Since Kids Rock Cancer is a contracted program and not provided by the hospital, Heuring-Sandheinrich must secure parental permission for a child to participate.
One cheesy song
"Typically, I sit down and try to build rapport with the child," Heuring-Sandheinrich explains. "The first thing we do is to create an idea page based on the conversation I have with them. We talk about how they are feeling, what they like and don't like about being sick. They can talk about the specifics of their disease if they choose to, or they can talk about what they like to eat. I write down verbatim whatever they say.
"I want to help create some independence for them," she continues. "So much of their lives are out of their control. This is a chance for them to choose how the session goes from start to finish."
Once Heuring-Sandheinrich thinks they have enough ideas on paper, she and the patient map out the lyrics. A song might be about how chemo makes a child's tummy hurt. Ari's breakout single, "Cheesy Booty," came from her love of the puffed-rice snack Pirate's Booty. Ari wrote her latest and fourth song, "You Can Get Through It," to help other children with cancer, based on Ari's four-year experience.
Creative license
Since being diagnosed on June 28, 2009, Ari has undergone 29 rounds of chemotherapy, two tandem bone marrow transplants, 25 days of radiation and six months of antibody therapies.
"I want (kids) to know that even if it seems really hard, or they feel really bad, it is going to get better and they, like me, can get through it," Ari says, referring to her song.
Heuring-Sandheinrich often strums her guitar as she and the child develop lyrics, just to get a feel for the song. "But the kids get to decide how fast or slow the music should be," she explains. "Do they want rap, rock and roll or country? Three verses or one? Every decision is up to them."
Laying down tracks
After nearly two hours of creating and practicing, Heuring-Sandheinrich plugs a microphone into her laptop and starts recording. As the child sings, the therapist can add background instrumentation or sound effects through a computer program. But once again, those decisions are left to the child.
"What's important is the process, not the product," says Heuring-Sandheinrich. "It's about self-expression, not about being pitch-perfect. The song doesn't have to be radio worthy. It can be silly, happy, poignant, whatever the child wants."
Aleeza Granote, a social worker for oncology/hematology at SSM Cardinal Glennon, says Kids Rock Cancer empowers her young patients as well as serves as a therapeutic tool. "It's a unique and powerful opportunity for kids to voice their feelings through music when they might not otherwise be able to talk about their experience," she says. "It's something fun they can do but, at the same time, they're reflecting and putting into words their experience with cancer."
Musical legacy
While the National Cancer Institute reports that 80 percent of children with cancer survive, 20 percent do not. The CDs, therapists note, are a way for families to listen to their children's voices after they are gone.
Peggy Musen, project director of Kids Rock Cancer, says the program costs about $100,000 a year to run. It was set up as a charity under the university, and receives funding from several St. Louis-area cancer support groups and granting organizations, she adds.
In May, Kids Rock Cancer raised $50,000 at a benefit at St. Louis' Sheldon Concert Hall, known for its exceptional acoustics. The concert featured several notable St. Louis-area singers, along with some of the kids performing their songs, including Ari. Musen says another Kids Rock Cancer benefit will be held at the Sheldon in February.
Sherlyn Hailstone, president of SSM Cardinal Glennon, is a fan of the program.
"Kids Rock Cancer is a wonderful partner that inspires children to understand and tell their own story through music," she says. "Providing children with this outlet truly helps nurture their emotional needs during a stressful period in their lives."
To hear some of the children's songs, visit chausa.org/kidssing.
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