Annie's synovial sarcoma adventure began on April 8, 2024. A phone call from her orthopedic surgeon, Dr. Burke, confirmed that the cyst removed from her knee joint on April 1 was malignant. Within the next few days, we met with several of Cleveland Clinic's finest. After the scans were done and decisions were made, she had a 13.5 hour surgery on June 25. She woke up to a metal knee and a muscle translocation. Her week's stay at Cleveland Clinic Children's Hospital was met with lots of pain, neausea, and pestering physical therapists. However, the highlights were vists with her best friends, family, and snuggles with baby Bertie (her then 3 month old cousin). After being discharged, Annie had to go back into surgery with Dr. Shultz for a skin graft on July 9. The nerve pain she began experiencing post-op was horrendous. Hours of moaning and crying made the rest of the summer slowly drag on. Her final cast was removed on August 7 and physical therapy began on August 8. Lots and lots and lots of physical therapy with Erin. When high school started on August 15, Annie rode in her wheelchair, but was SO happy to be back to a "normal" routine surrounded by her classmates. Being part of the marching band helped her to form new friendships as she navigated the excitement of Harvey. By Christmas, she finally gave into seeing a pain management doctor for her mending nerves. The meds immediately took away the insatiable tingling feeling. Thank goodness! At her 3 month January 2 appt, Annie was given permission to get back in the saddle. On January 11, she hopped onto a lesson horse at Synergy and took it slow. Best day ever! Since then, she's been riding weekly and is actively looking for a new barn best friend. Her physical therapy continues and she's gaining strength during each session. She's back to playing piano and is taking trumpet lessons. Almost daily, she rockin' out to Taylor Swift, soaking up equine information from YouTube Shorts, and diving into the world of HP as she rereads the fantastical series. Currently, she's looking forward to her upcoming Wish trip to Disney, Universal, Sea World and Discovery Cove (where she'll swim with dolphins) and starting her college career this summer through CCP classes. Because of the amazing caregivers we've connected with and a strong, loving support system, Annie is back to being a (mostly) carefree teen. She's loving life and she is SO blessed.
Thanks to the Race to Cure Sarcoma events, SFA has invested over $20 million in sarcoma research, funding over 200 grants in 12 countries leading to close to 200 total publications, adding to the sarcoma research discourse. This has led to $26 million+ in additional funding, 10+ clinical trials with 5 additional pending, and 2 patents. Your investment in the RTCS events, is an investment in saving lives.
