This kid really rocks cancer

Arianna ‘Ari’ Dougan

By Ellen Futterman, Editor

Gifts from the heart seem appropriate around Valentine’s Day. After all, it’s a time for love and giving. So it makes perfect sense that Dr. Al Hammerman, a radiologist at Metro Imaging who also happens to be a composer and lyricist, would perform a benefit concert Feb. 13 for an innovative program he helped champion at Maryville University called “Kids Rock Cancer.” 

It also would make sense that Arianna “Ari” Dougan, who will turn 8 years old on the 20th of this month, would perform at the concert. After all, Kids Rock Cancer has played a big part in her life from the time she was 3. 

That’s the age Ari was diagnosed 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. She has spent much of the past five years living in hospitals, undergoing more than 30 rounds of chemotherapy (her mother, Lori Zucker, says she lost count), two tandem bone marrow transplants, 25 days of radiation and more than nine months of antibody therapies. 

As you can imagine, having cancer is nothing to sing about, yet Ari and dozens of other sick children have found solace in doing just that, through Kids Rock Cancer. Begun by the music therapy department at Maryville University, the program utilizes a certified music therapist who visits children’s hospital bedsides, and works with them to write and record original songs that they get to keep on a CD. Since its inception in November 2009, Kids Rock Cancer has benefitted roughly 350 children and their families at hospitals and cancer support centers throughout St. Louis, free of charge.

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“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. “But what is unique about our program is that it is an outreach of the university to (St. Louis area) children’s hospitals.”

Ari first was introduced to Kids Rock Cancer as a patient at St. Louis Children’s Hospital. There, she met music therapist Tracie Heurig-Sandheinrich, who has been the public face of the program since its inception. 

Heuring-Sandheinrich explains that the first step in “cutting a song,” is for her to sit down and build rapport with the young patient. She does this largely by having a conversation and letting the child be in charge. They talk about everything and anything, from how it feels to be sick to the child’s favorite activity. Heuring-Sandheinrich writes everything down verbatim on her laptop, creating “an idea page” to jumpstart the process.

Once they have enough ideas on paper, the therapist and 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. Her fourth song, “You Can Get Through It,” was written to help other children with cancer, based on Ari’s experience.

“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,” says Ari, whose family belongs to Congregation Shaare Emeth. 

Heuring-Sandheinrich often strums her guitar as she and the child develop lyrics, just to get a feel for the song. “But the kids gets 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? They are in charge of every decision.” 

After nearly two hours of creating and practicing, Heuring-Sandheinrich plugs a microphone into her laptop and starts recording. As the child sings, background instrumentation or sound effects can be added through a computer program. But once again, those decisions are left to the child.

 “What’s important is the process, not the product,” Heuring-Sandheinrich says. “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.”

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. 

That’s where the Feb. 13 benefit comes in. Last May, Kids Rock Cancer raised $50,000 at a similar event, which featured vocalist Erin Bode, among others. Several of the kids of Kids Rock Cancer, including Ari, performed as well, which she will do again, with Hammerman and other notable local performers on the 13th at the Sheldon Concert Hall. The theme of this benefit, “I Got A Song,” will showcase standards in the tradition of the “Great American Songbook.”

As for Ari, her mother reports that from last August to November, the two traveled every couple of weeks to Memorial Sloan-Kettering Cancer Center in New York so that Ari could receive a new antibody therapy trial that wasn’t available anyplace else. After three months, they were told that she could no longer receive the treatment because her body was not responding.

“That was very disappointing,” says Zucker. “So we started to look for other treatments. We found one in Texas but before we started, Ari needed to get retested.”

When Ari did get retested the family learned the best news possible: She was NED – no evidence of disease. Today, Ari is back at the Shining Rivers Waldorf School, a small, private elementary school in Webster Groves. Soon, she will start another drug trial at Cardinal Glennon, hoping to keep her disease at bay. And she is feeling energetic enough to play — and bicker, of course — with her two older brothers, Aidan, 9½ and Liam, 11½, who couldn’t be happier that their sister in now cancer free.

And that, says Ari, is definitely something to sing about.

Tickets to the Kids Rock Cancer benefit at 7:30 p.m. Feb. 13 at the Sheldon are $50 and available through MetroTix at 314-534-1111 or metrotix.com. For more about the program, or for sponsorship information, contact Peggy Musen at 314-570-5963 or [email protected]