From Chordoma survivor, Kaitlin Slepian:
I was a high school senior when chordoma blindsided me. It hit me at a point in my life when most everything was going my way – I had a wonderful family and friends, a great school, and was involved in volleyball, student government, and show choir. That’s when the pain in my neck began.
At first, my parents and I thought it was from my active lifestyle, but when massage and chiropractic care didn’t help, my dad Mark, a radiologist, suggested an MRI. A mass was found on my spine and from that day on, my life would never be the same.
While my friends were working on their college applications and going to football games, my family and I were trying to figure out what was wrong with me. For months I visited different doctors, took tests, and had surgeries. I was misdiagnosed twice before I found out that I had poorly differentiated chordoma. So there I was at 17, trying to plan for the future while fighting a very rare form of an already rare cancer.
My mom was my cheerleader. She kept me and my sisters upbeat and forward-looking. My “doctor dad” as I called him used his connections in the medical community to learn everything he could about chordoma. He spoke to colleagues around the country, dug into the research, and found the Chordoma Foundation online. In particular, he asked a lot of questions — of patients, of survivors, of doctors, and of the Foundation’s Patient Navigators. That’s how we met the pediatric chordoma specialist who ended up coordinating my care. He was like a guardian angel for our family.
Over the next nine months, I underwent nine rounds of chemotherapy – to target my specific type of chordoma – and 38 radiation treatments, all while sending out college applications, singing in show choir, and maintaining a 4.6 grade point average. There were horrible moments, but there were also undeniable glimmers of positivity – the amazing people we met, the doctors who made sure I was able to attend every important milestone of my senior year from prom to graduation, and the fact that I finished chemo three weeks before college started.
Today I’m 19 years old, my MRIs show no evidence of disease, and I just finished my freshman year at the University of Arizona where I am studying to be a Child Life Specialist so I can work to help kids going through the same experiences as I did.
The outlook for patients like me is improving, but new treatment options are still desperately needed. That’s why my family and I support the Chordoma Foundation. Because it’s not a matter of if they’ll find a cure, but when. And with your help, we can accelerate that timeline together.
Join us today and be part of the solution by making a gift.
Thank you,
Kaitlin Slepian
Chordoma survivor