Overcoming Ewing Sarcoma
- Lydia Gerdes, 12, overcame an Ewing sarcoma diagnosis, 101 doses of chemotherapy, 32 days of radiation and 22 blood transfusions over the course of seven months to get back to the sport she loves: swimming.
- Ewing sarcoma is a type of sarcoma that occurs in bones or in the soft tissue surrounding the bones, and “lifelong monitoring” is generally recommended after treatment for the disease.
- In a previous interview with SurvivorNet, Marecya Burton explained how ovarian cancer changed the course of her life. Now, she’s a high school social studies teacher and “wouldn’t change [her] career for the world.”
Lydia was only 8 when she first started having struggling with her health. She traveled to a swim meet with her mother but was unable to compete all weekend due to her flu-like symptoms. And when she got back home, her fever and illness only grew, and she even woke up with a baseball-sized lump on her chest.Read More
“Lydia is a very stoic person,” Michele said. “Even through all of the treatment, she wouldn’t get upset or worried.”
Instead, Lydia put her head down and pushed through. She completed all her school work for the third grade in between chemotherapy treatments, insisted on taking a state-mandated standardized test and even learned how to weave for a project on Native American culture. She didn’t even have to have a late start to fourth grade and returned to swimming two months before her treatment ended.
“She’s the most coachable kid I’ve ever had,” Lydia’s coach at Humboldt Swim Club said. “She wants to challenge herself.
“I mean, she smiles the whole time… It makes my life easier when she’s at practice.”
Now in the sixth grade, Lydia is only continuing to challenge herself. In fact, she just partook in the Swim Across America campaign where she swam 1.5 miles across San Francisco Bay. As an advocate and cancer survivor, she raised over $10,000 “to support the same oncology programs and research that saved [her] life.”
“My daughter is one of the toughest, bravest humans I know,” Michele said. “And you know she wants to just move on and be a 12-year-old kid”
What are Sarcomas?
The term sarcoma is used to describe an array of more than 70 rare cancers that begin in the bones and the soft tissues. This diverse group of diseases accounts for only about one percent of tumors in adults and just over 10 percent of tumors in children.
The main symptom of sarcomas is generally a slow-growing, painless mass, but symptoms can be hard to detect as soft tissue sarcomas are typically painless and bone sarcomas can be mistakenly diagnosed as orthopedic injuries.
“Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancers,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, tells SurvivorNet. “A mass the size of a golf ball or larger and growing should be evaluated as a potential sarcoma. It’s important that patients who do have symptoms are not dismissive of them.”
Understanding Ewing Sarcoma
Ewing sarcoma is a specific type of cancer that occurs in bones or in the soft tissue surrounding the bones. It is most commonly found in adolescents, but younger children, as well as adults (in their 20s and 30s) can also be diagnosed with this disease.
According to the Mayo Clinic, some signs and symptoms of Ewing sarcoma include:
- Pain, swelling or tenderness near the affected area
- Bone pain
- Unexplained tiredness
- Fever with no known cause
- Losing weight without trying
Treatment for Ewing sarcoma depends on the location of the cancer and the size of the tumor at the time of diagnosis. A doctor’s treatment plan may involve a combination of chemotherapy, radiation and surgery.
Sometimes the aggressive nature of these treatments can cause both short-term and long-term side effects. According to the Mayo Clinic, “lifelong monitoring is recommended” after completing treatment to watch for potential late effects of the intense treatment.
Thriving as a Survivor
A cancer diagnosis can change your life. But as we’ve seen in the case of Lydia Gerdes, you can thrive on the other side of treatment.
Take Marecya Burton, for example. She was diagnosed with ovarian cancer at just 20 years old. Burton was a college student-athlete looking forward to graduation at the time, but all that had to change when she was forced to move home to start treatment.
“That was definitely challenging for me,” Burton said in a previous interview with SurvivorNet. “I was looking forward to graduating.”
She also had planned on pursuing a law degree after graduation – another dream she had to give up.
“I really had to, in a sense, put my life on hold,” she said. “Sometimes I look at where I am, and I can’t help but wonder, would I be further had I not had my diagnosis?”
But instead of law school, Burton found a new passion: teaching. She became a high school teacher in Baltimore, Maryland, and she’s since made peace with her new direction in life.
“I wouldn’t change my career for the world,” she says. “It’s so fulfilling.”