Ewing’s Sarcoma: A Family Fights Together
Advocacy Led by the powerful example set by their youngest, one family is sticking together to take on the unique fight that comes with a rare cancer diagnosis.
After 13-year-old Martha Reidel began walking with a limp during a school field trip to New York City in April 2015, her parents, Ned and Margaret, took her to the doctor, who suspected the discomfort was due to a 25-millimeter difference in leg length.
But when the Boulder, Colorado, family sought another opinion at Children’s Hospital Colorado the following August, they learned the true source of her unusual stride: Ewing’s sarcoma, an extremely rare cancer of the bone and soft tissue that primarily affects young people.
“It just didn’t seem real, because it’s always somebody else,” Ned, 49, says of Martha’s diagnosis. Now, the family—Martha’s twin sister, Annie; 17-year-old Sean; 19-year-old Ian — are living what Margaret calls their “new normal.” It’s riddled with daily IV bag changes for Martha, who is undergoing chemotherapy, as well as checkups to monitor her white blood cell counts.
“Life goes on, but it’s in a different way,” says Margaret.
Ewing’s is a small tumor that microscopically appears round and blue. While a genetic component may be involved, like many cancers, its exact cause is unknown. According to Martha’s primary oncologist, Dr. Carrye Cost, an assistant professor of pediatrics at Children's Hospital Colorado, Ewing’s presented in Martha’s pelvis and metastasized to her bones upon diagnosis.
"Martha estimates she’s been able to stay positive by maintaining perspective. 'It really sucks,' she begins. 'But I feel like it’s been a lot easier for me than other people.'”
Standard treatment for Ewing’s requires 14 rounds of chemotherapy over 28 weeks, plus radiation or surgery. Martha began chemotherapy in September, then underwent six weeks radiation around the holidays. Although she has lost her hair, experienced fatigue and vomiting, the young fighter has coped well with the side effects, says Cost, describing Martha as mature beyond her years.
“At [Martha’s] age, the obvious approach would be to turn into herself or her family,” she explains. “But I feel like she’s been the opposite, and not only figured out how to help herself, but how to help others.”
Martha has carved handmade rubber stamps for the hospital to use as thank-you notes, and befriended other patients undergoing chemotherapy.
“I have been amazed at how Martha has been optimistic about her therapy, and done the same for us,” Cost continues. “She would never let me have a bad day or let me feel sad, because she wouldn’t want that for us.”
Martha must avoid some activities, like sledding and snowboarding, because treatment has made her bones more fragile. But Ned and Margaret have striven to maintain a sense of normalcy. After checkups, Ned sometimes takes her to their favorite taco shop in town, and they have a stationary bike set up indoors, with a mag trainer. In March, she’ll join 23 other adolescent patients at Children’s for a retreat, during which they will get a break from the hospital atmosphere and attend the Colorado Rockies’ spring training.
Martha estimates she’s been able to stay positive by maintaining perspective. “It really sucks,” she begins. “But I feel like it’s been a lot easier for me than other people.” These days, she’s looking forward to getting her hair back post-chemotherapy: “Hair is fun because you get to style it and do whatever you want with it.”
Ned and Martha have found strength through their community support but also through their daughter herself. “[Martha] is special and she has proven even more special than I knew she was,” sums Ned. “What gives me my strength is Martha—that she’s just been so strong, and it makes me strong.”