Ari Dougan loves tutus, princesses and twirling around the house. When she turned 3, she couldn’t wait to start taking real dance classes in the fall.
But that summer, Ari got cancer: neuroblastoma. Her immature nerve cells were growing into cancer cells instead.
The owner of St. Louis Academy of Dance in Olivette heard about this little girl who lived nearby and so badly wanted to dance, but her treatment kept her in the hospital or at home quarantined and very tired.
“We decided every Wednesday, we would just take dance class to her,” said studio owner Kacy Voskuil.
Over the next 18 months, Ari underwent chemotherapy and two bone marrow transplants. Voskuil and instructor Emily Edwards visited every week through it all – doing plies and releves with the frail little girl – her IV stand doubling as a ballet bar.
Often, dance class was the only thing that would get Ari out of bed. If she wasn’t able to dance, Voskuil and Edwards would snuggle with her on the couch over books and classical music. Ari looked forward to their visits as soon as they left, planning her outfits days ahead, said her mom, Lori Zucker, 44. “To say it fed her soul every week was an understatement.”
Around the same time, Voskuil and Edwards attended a retreat where they learned about Drea’s Dream, a dance therapy program in hospitals and schools that uses movement to help children heal physically and emotionally. They looked at each other and knew. They had to bring this to St. Louis.
To raise money, the two took on a huge undertaking – an auction and high-caliber show. They invited local professional dance companies to donate their time to perform along with their own troupes. That was 2010.
Next month, the sixth annual Drea’s Dream Gala will take place at the Edison Theatre. They raised enough money to start a dance therapy program at Cardinal Glennon Children’s Medical Center in May 2012, with a therapist visiting once a month. Since the beginning of the year, a dance therapist has been able to visit patients every week.
But once a week is still not enough.
“In our minds, that’s huge,” Edwards said. “But we definitely have our sights set on more than that.”
When dance therapist Katie Bohn arrives at Cardinal Glennon on Tuesday, child life specialist Denis Schmidt hands her a list of kids up for a visit that day. “They ask all day where you’re at,” Schmidt tells her. “They say, ‘Can you please send Katie back?’”
Bohn finds 11-year-old Cody Maxfield in bed with his covers pulled high, belly aching from having his appendix out the day before and on pain medications. His nurses’ goal for him that day: Walk down the hall.
“So, what is a dance therapist?” he asks Bohn.
She explains that they’ll do some gentle and maybe playful movement. That sounds good, he said.
Bohn notices a stuffed animal tucked under Cody’s arm. It’s Rudolph, a build-your-own deer the Winfield boy made at Bass Pro Shops in St. Charles. “Does Rudolph like to dance?” she asks. Cody doesn’t know, he’s never seen him.
As the songs play, Cody moves Rudolph’s head side to side. Eventually, Rudolph is flying on a green scarf and taking a bumpy ride to Paris, where they must loosen up before walking to get tea. They look at the Arc de Triomphe and climb the Eiffel Tower.
Without realizing it, Cody is sitting up, moving his head, waving his arms, rolling his shoulders, taking deep breaths and wiggling his feet. Then Rudolph watches as Cody and Bohn, palm to palm, make circles and press their hands against each other.
After she left, Cody tells his mom he feels like going on a walk.
How movement and breath can help manage pain and anxiety is clear, Bohn says. But the range of emotions felt while dancing – connection, joy, vulnerability, empowerment – are immeasurable.
Sick children, Bohn says, often detach from their physical selves. They are constantly being poked and prodded. They might see their bodies as failures, the source of their disease.
“To experience their body as a source of joy and independence is super important,” Bohn says.
Parents say they appreciate anything that brings joy and distraction; that allows their children to play, use their imagination and be like other kids.
Next on Bohn’s list is Aly Bauman, 10. She was born with an intestinal disease and blood clot. Every week nearly all her life, Aly has had to travel to Cardinal Glennon from St. Genevieve to get a blood transfusion. Surgery is dangerous, but lately, she has been needing the five-hour-long transfusions several times a week.
“Do you like to dance?” Bohn asks her, getting a mix of a nod and shoulder shrug.
The kids are usually unsure and guarded at first. Bohn starts small and builds. Within moments, they are beaming.
Holding the ends of a purple scarf between them, Bohn and Aly lean back with their arms outstretched as if they were ballroom dancing. Aly has a sweet smile.
Aly’s dad takes a picture and sends it to her mom, Connie Bauman. “What is she doing?” Bauman texts back. Sport and most activities have been out of the question for Aly, and she is very shy. “She’s dancing,” he wrote. And yes, she likes it.
Bohn ends Aly’s session with a one of her most popular dance moves: a hug.
Ari, who turns 9 on Friday, is defying all the odds after two relapses of her cancer. She travels to Philadelphia as part of a clinical trial testing a targeted radiation therapy. She takes dance classes and for the first time, she plans to perform in the gala that she inspired.
Ari was invited to talk to other dancers performing in the show about how dance therapy helped her, so they understood their important role.
“To see Ari tell them what an incredible thing they are doing for her, was pretty amazing,” Edwards said. “It’s humbled them a little bit, and shown they can have an impact outside of their walls.”
Ari is aware of her role too, said Zucker, her mom. “She knows she is helping bring dance therapy here, and that’s special.”
Bohn has also visited the performers, explaining her training and the work she does with patients.
Dance movement therapists are trained through a graduate program offered by a university, or by earning a master’s degree of their choice in combination with courses and an internship led by certified dance therapists. The training and certification is regulated by the American Dance Therapy Association.
Bohn has a master’s degree in counseling, trained at 92Y’s Harkness Dance Center in New York City and works full time as a dance therapist at McCallum Place, an eating disorder treatment program in Webster Groves.
Edwards and Voskuil hope to raise enough money to have a full-time dance movement therapist at Cardinal Glennon and someday to expand to other pediatric hospitals.
“Kacy and Emily have such big hearts. They worked so hard to make this happen,” Zucker said. “I would love to see this program take off.”