In the summer of 2017, Ryan started to experience lower back pain which varied in severity. We initially thought it was a minor soccer injury and took her to an Orthopedic Surgeon. He made an initial prognosis of slipped discs and prescribed a soft back brace to wear when she was in pain. The pain came and went over the next few months, but in March 2018, the level intensified to a point where over the counter pain medications were no longer working.
At that time, we met with a new Ortho to get a second opinion. She recommended an MRI, but Ryan was unable to lay still through the procedure due to the severity of her pain. However, even with limited images, they could tell it was serious. We quickly scheduled a full sedated MRI at Orlando Health Arnold Palmer Hospital for Children a few days later.
Through the MRI the Neuro Oncologist saw a grapefruit sized soft tissue tumor on the base of her spine. We were definitely stunned by the news and immediately started exploring treatment options. Over the next few days we traveled to UF Health Shands Hospital in Gainesville for biopsies of the tumor, bone marrow and additional imaging. They initially classified it as a malignant tumor, which then turned into a diagnosis of Ewing’s Sarcoma.
Given our close proximity to Orlando Health Arnold Palmer, we decided it was best to start her treatment there. We met with the oncology, pain management and child life specialist teams. They presented her treatment roadmap and also helped us share the news with Ryan, and her older brother Finn. Shortly after our first meeting in April 2018, Ryan had surgery to have a port implanted and immediately began chemo.
Adjusting to her new schedule was tough during the first few months. But, despite losing her hair, missing school and friends, she kept a positive attitude. After the sixth round of chemo, we received good news. The new imaging confirmed the tumor had shrunk dramatically. At the onset, we thought surgery would be involved, but the location of the tumor provided complications. After getting feedback from the Tumor Review Board, we moved forward with proton therapy in September 2018. Every day for six-weeks, we drove Ryan downtown after school for treatment at The Marjorie and Leonard Williams Center for Proton Therapy at Orlando Health UF Health Cancer Center. Many visits ran late into the evening because of platelet and blood transfusions that were needed to maintain counts.
Ultimately, chemo and proton therapy were the protocol that Ryan followed for nine months. Throughout treatment we had to balance lab appointments, hospital stays, school and some normalcy for Finn. In total, she completed 14 rounds of chemo and 31 treatments of proton therapy. Both were intense, and her hospital stays ranged from three days up to a week. She was delayed a few times for not making counts (hemoglobin, platelet or white blood cells were too low), but ultimately finished chemo at the beginning of December 2018. Initial scans showed a small nodule in her chest area, but a follow-up scan 6 weeks later showed that all was clear. Ryan was declared NED (No Evidence of Disease) in January 2019 and over Spring Break had surgery to remove her port.
Ryan’s been back at school full-time for almost a year and has also resumed training with her soccer club. We continue to have quarterly follow-ups where she does a full round of scans (PET/CT, MRI and Echo/EKG) and meets with her Oncologist. As a family, we continue to adjust to our new normal and feel very blessed to have 2 happy and healthy kids.