7-year-old Kylie is a kind and outgoing girl, who can start a conversation with anyone. In February 2022, she was diagnosed with stage 4 rhabdomyosarcoma.
At Kylie's 6th birthday party in January 2022, her mom first noticed that something was wrong. Kylie, who's normally bubbly and chatty, appeared tired and was lagging behind her friends on their way to a movie theater.
Over the next few weeks, the signs began to pile up – Kylie complained of hip and leg pain, and soon she was too sore to walk. Her mom wheeled her into appointment after appointment in a stroller.
After multiple tests and scans, the official diagnosis finally came... Kylie had stage 4 alveolar rhabdomyosarcoma.
Alveolar rhabdomyosarcoma is a rare type of cancer that forms in the soft tissue. At this stage, the cancer had already spread to Kylie's abdomen, lymph nodes, and in the fluid in the lining of her lung.
Right after her diagnosis, Kylie was admitted to the hospital and started chemotherapy. She has also endured radiation treatment, pet scans, CT scans, NG tube insertions, dressing changes, and countless blood tests.
Throughout all of this, Kylie has shown resilience and maintained an incredibly positive attitude during the most difficult stretches of treatment.
There’s currently a clinical trial testing a new treatment protocol for kids with Kylie’s type of cancer. Kylie wasn’t able to enroll in the trial herself, but her doctors and care team are mirroring the treatment being tested in the trial so she can benefit from the best and latest research.
Kylie’s parents, Kristen and Sean, are grateful that she’s been able to get these new treatments but say it’s frustrating that research for children like Kylie is still so limited. In Kylie’s case, new treatments are just barely keeping pace with her disease.
“The lack of progress with new treatments is really frustrating,” Sean said.
“The protocols for rhabdomyosarcoma were developed decades ago and the overall survival rate is unfortunately not great. We need funding for research and development of new protocols that will lead to better long-term outcomes.”
GCCers, your fundraising is vital to make more breakthroughs for brave kids like Kylie. Let's keep this brave girl in our thoughts as we ride this September.