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Dance Marathon: Health-care staff works with families fighting childhood cancer

BY ABIGAIL MEIER | JANUARY 27, 2014 5:00 AM

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Child-life specialists and other members of the University of Iowa Children’s Hospital staff use children’s books to explain the worst possible scenario to those losing their battle with childhood cancer. The parents sit with the children in their laps, leafing through one of the hospital’s worn books, as the families before them did.

These stories features pets, who by the story’s end, pass away.

The hospital staff supports the parents as they then explain — sometimes to children under the age of 5 — that like animals in the stories, they, too, are dying.

But this is only one of many ways the hospital staff works with the families.

A family walks into the Children’s Hospital in hopes to receive a diagnosis to determine what is wrong with their child. After hours of poking and prying, examinations, and blood work, a team of physicians, nurses, social workers, and child-life specialists enter the hospital room to read the final diagnosis — cancer.

After hours of poking and prodding, examinations and blood work, Mary Schlapkohl, one of two nurse practitioners on the Pediatric Oncology Department floor at the Children’s Hospital, is one person in the group of health-care providers who reveals the cancer diagnosis. She is the first to have the face-to-face conversation with many of the Dance Marathon families who experience childhood cancer. Some reactions she has witnessed are people full of tears, shock, and family members who sometimes pass out.

“These parents just can’t imagine how they are going to do this, and in my heart, I know that they can,” Schlapkohl said. “One of the joys that I get from this job is helping them learn that about themselves.”

As the students in Dance Marathon are coming in on the final stretch of preparation and last-minute planning for the Big Event on Feb. 7 and 8, the health-care team sees firsthand the year-round support of Dance Marathon.

Schlapkohl said she was at the very first meeting 20 years ago when Dance Marathon began, and the organization has not only inspired the families but also the health-care staff.

John Werner, one social worker for Pediatric Hematology Continuity and Care, said this can be a difficult job. Many of the healthcare staff on the pediatric department has to learn to “compartmentalize” their emotions.

“Everything we do for the families, we do it in a team approach,” Werner said. “We all have our area of knowledge and together that comes together and that’s where it becomes the most effective for the families.”

Many times the staff will be in a room celebrating the end of chemotherapy treatment for one child, and 10 minutes later, the members will walk into a room where a child has just been diagnosed. They must be able to adjust to the different emotions quickly and separate work from home, but not in a detached way.

“I think we take part of our days home with us every day,” Werner said.  “That’s one of the benefits of the whole team approach, because your team members are all going through the same thing. It’s shared feelings and shared emotions you are going through, so it doesn’t have to be spoken, but there is an understanding of what we are going through.”

Racheal Niensteadt, a child life specialist at the UI Children’s Hospital said many times when she goes home at night she is not able to talk about her day with her family or friends.

“There is no way to describe it to your family what kind of day you have had,” Niensteadt said.  “When you start explaining to someone what you do they start to feel bad for you, and you don’t want them to feel bad for you.  We are lucky to be able to work with these families.” 

Many of the health officials who make up the Pediatric Department depend on organizations such as Dance Marathon to help the families with emotional and financial support. Kathy Whiteside, another child-life specialist at the Children’s Hospital, said many people would think her job is difficult to handle emotionally.

“I’ve found that over time it has become easier to separate home and work, but not in a detached way,” Whiteside said.  “Of course there is an emotional component and there is no way around it.  If you weren’t emotional then I don’t think you’d be very good at your job.”

Whiteside said Dance Marathon has been a huge support for the families while they are on an emotional rollercoaster throughout the years of treatment.  Whiteside said between the family events, financial support, and emotional support it means the world to these families during their time in need. 

Schlapkohl said the process of introducing cancer into the family’s life begins with educating the family of what is happening to their child and start to create a “new normal” within a two-day period.

The families become educated on side effects of treatments, health risks they need to notify the hospital of when they go home, medication schedules, blood work, chemo therapies, and much more.

“In the beginning we have to hold them up and support them, but as time goes by they are walking very proud with strength and resiliency that they didn’t even know they had,” Schlapkohl said.

Whiteside said Dance Marathon has been a huge support for the families while they are on an emotional roller coaster.

“They have made what we are able to do better. What I want the dancers and the students for the last 20 years to understand is how much we in the hospital side appreciate what they do for our families,” Schlapkohl said. “With all the things Dance Marathon has been able to do, it has kind of changed the energy on the floor for all of us.”

Daily Iowan reporter Abigail Meier participates in Dance Marathon.


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