Ema Johanning
Ewing Sarcoma

15 Years Old at Diagnosis

In October of 2011, when Ema was just 15, she started experiencing back pain. Her family took her to several doctors, and no one could figure out the cause of her pain. As the months progressed, Ema's pain progressed from her back to her hip. Ema endured several MRIs that were all inconclusive, so they finally headed to Children's Hospital in Omaha where they were admitted and more tests were performed. As Ema's pain progressed, her doctors decided to perform a biopsy. Children's preformed two biopsies in the left femur and confirmed their worst fears, Ema had Ewing sarcoma.

From that point on in February of 2012, their lives would never be the same.

Ema underwent 14 rounds of chemotherapy. In June 2012, about half way through her treatment, she underwent a resection surgery in an effort to remove the tumor. The rounds of chemotherapy were hard on Ema. She couldn't attend school, and had to receive physical therapy to get her strength back. Though she completed treatment in December of 2012, she still hasn't been able to return to school.

Ema started receiving physical therapy shortly after surgery but she was not able to recover like the doctors anticipated. Doctors were unable to reduce her pain as she learned to adjust to the new partial hip replacement. Ema's parents were becoming desperate to give Ema the quality of life she deserved so they sought out a well-known Children's Rehabilitation Hospital an hour away from their home. Ema would be admitted at the Madonna Rehab Hospital. The hospital has given her the opportunity to find others she can relate to who also face pain and physical limitations that most teenagers never have to deal with. Finding this camaraderie has helped Ema establish a new normal and look towards a different future.

Ema was starting to cut down on pain medication and rebuild some of her lost strength, when her pain returned stronger than ever. Her doctors couldn't figure out what was causing this change. After several stressful months, she and her family headed to the Mayo Clinic to see if they could finally figure out the source of the pain. Doctors confirmed that she is still in remission but the pain of the tumor resection will be lifelong battle. Due to the ongoing management of pain and chemotherapy side–effects, she has been diagnosed with other illnesses such as: intercrainial hypertension, Addison's disease and nerve damage.

Even though Ema has been through more than most, she is still looking forward to a future. She hopes to go back to school, graduate, attend college, and lead a normal life. Cancer has changed her life, but she wants to use that change to make a difference for other children diagnosed with cancer.

Ema and her family are helping to make a difference through their participation in the Omaha CureSearch Walk. They found out about CureSearch while waiting at the clinic at Children's Hospital of Omaha, and thought that it would be a great way to give back. This is the family's third year involved, and they can't wait to see all their friends and family to celebrate how far they have come.

Ema has beat cancer, but her journey with cancer and the side-effects of treatment are far from over.

Join Ema and other families like her at your local CureSearch Walk. To find a Walk near you, visit www.CureSearchWalk.org.


 

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