Girl Survives Rare Cancer and Raises Awareness for Research

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DES MOINES, Iowa –September is dedicated to raising awareness for childhood cancer. Metro families affected by the pediatric disease are doing their part to let people know how cancer affects kids and those who love them.

First Grader Lilly Winterbottom spent a good chunk of her childhood in and out of the hospital. Mom Natasha Winterbottom says, "She was diagnosed with mature peripheral t-cell lymphoma. It was a really rare form of lymphoma. It was non-hodgkins, and she was actually the 19th case in U.S. history."

Doctors didn't have a clear course of treatment, since her cancer was so rare. Lilly went through chemo right away, then had a bone marrow transplant and stayed in relative isolation for months after that. She's now a three year cancer survivor. Her mom says, “Honestly, I think we're blessed, like it was really kind of a shot in the dark."

But, her fight isn't over. She faces a long list of side effects. She's two years behind in bone growth. She has physical therapy and occupational therapy. She's had precancerous moles removed, and there could be long term effects. Winterbottom says, "They told us she won't most likely be able to have her own kids. It's kind of hard to deal with.” She goes on to say, “So, fertility is a big issue for kids going through cancer treatment."

More than 100 kids are diagnosed with cancer every year in Iowa. About 8,000 are diagnosed around the country, and funding is needed to find a cure. Dr. Carla Schwalm, a Pediatric Oncologist with Blank Children’s Hospital, says, "Childhood cancer does not have the funding from the national government that adult cancers do, just because it's not as prevalent as adult cancers. And, then the government continues to cut down on funding that they send for all research, and that continues to affect all types of cancer, but especially kids with cancer."

Private donations help. Children's Oncology Group raises money for research and clinical trials. You can also help by participating in the Cure Search Walk. It's Saturday, October 11th at Principal Park.

Families like the Winterbottoms also raise awareness by wearing gold, the symbolic color of childhood cancer, and sharing their little girl's story. Winterbottom says, "We're just really thankful. We're thankful for where we are. When we talk about Lilly, she is absolutely our miracle child."