Meet Ryan Kennington, an OsteoWarrior who is now pursuing a career in cancer research. Ryan was diagnosed with osteosarcoma in his hip joint in September 2014 when he was 17 years old. After completing primary treatment in July 2015, he relapsed in January 2016 to his lung and had surgery to remove the nodule in April 2016, and has been NED since! Ryan graduated from the University of Delaware with a degree in biology and plans to go to medical school to pursue a career in medicine. During his undergraduate studies, he volunteered in the Sims-Mourtada Lab at the Helen F. Graham Cancer Center & Research Institute to develop his skills in translational research. During the summer of 2018 and 2019, and after graduation, Ryan joined the Schiffman Lab as a research assistant. He is currently a clinical research coordinator at the University of Utah. A tremendous patient advocate, Ryan was a member of the inaugural MIB Agents Junior Advisory Board and has courageously shared his patient experience in several speeches at an MIB FACTOR conference and a collaborative MIB & Hyundai Hope On Wheels conference. His mom Linda is an MIB Agent extraordinaire, documenting our annual FACTOR conference as our resident photographer, honoring our OsteoWarriors and OsteoAngels with beautiful luminaria at FACTOR, and representing patient voice with her legislative advocacy efforts with MIB Agents.
Can you share your osteosarcoma story with us? How were you diagnosed, what was your treatment, and what kind of surgery did you have?
Diagnosis was difficult. Being a healthy young adult, no one ever expects the worst, and neither did I. As an avid soccer player growing up, I thought my initial pain was muscular. But, after routine physical therapy and rest, the pain persisted and rapidly became worse week after week. I saw more medical professionals than I could count and none of them could figure out exactly what the problem was. My family and I were exhausted. Unfortunately, I had a misdiagnosis and an unnecessary surgery before I became officially diagnosed with osteosarcoma. I had standard MAP treatment with an additional dose of cisplatin. I had an atypical surgery. Unlike normal total reconstructive surgery of the hip, my orthopedic surgeon and her team were able to use highly specialized tools to remove my tumor and save more surrounding healthy tissue that would provide me with more mobility.
You were diagnosed when you were 17, during your senior year of high school - which is a challenging time developmentally, and you missed a lot of milestones - Prom and graduation. Can you share some of the challenges you faced as an AYA patient?
Missing my senior year was challenging as I missed the concluding moments of that first chapter of my life. I never got that closure to the friendships, classmates, and teammates that I had known my entire life up to that point. Out of all the afflictions from osteosarcoma, this was one of the worst to cope with. However, I always try to look at life optimistically and see that time as a good way to reset. Throughout high school, I struggled with finding out who I was and what my role in the world would be. I definitely stumbled a bit as I finished my senior year and dealt with a brief relapse but I finally found my footing when I entered my freshman year of college. It allowed me to have a fresh start. To start a new life post-osteosarcoma was something I desperately needed at the time. Sometimes the greatest periods of growth come immediately after periods of adversity.
You are now 8 years NED (Yay!). Survivors often deal with long-term effects from chemotherapy and surgery. Are there any long-term effects that you have experienced and how have you managed them?
I have been extremely fortunate in regard to long-term effects. From chemotherapy, I have only developed tinnitus since my final dose of cisplatin. As for the surgery, I do have occasional flare-ups in my sciatica nerve due to my hip replacement. However, this seems to be easily resolved with stretching.
Why/how did you decide to pursue a biology major in college?
I originally went to college for environmental engineering, something I had decided on before I was diagnosed with osteosarcoma. However, due to the cancer diagnosis, I went through a period of major personal growth and development. I was struggling to deal with what my life would look like after osteosarcoma. As such, I just stuck with what I picked beforehand as a way of not adding more stress to my life. As college classes became progressively harder, I slowly came to the conclusion that my heart and mind were with the medical community. So I changed my major to biology to pursue medicine. My experience with osteosarcoma was something I could never leave behind. To some people that may be a dreadful curse, but to me, it shaped me into the person I am today and for the better. I didn’t let osteosarcoma define who I was but rather I came out with a new perspective on life.
Tell us about what you are working on in the Schiffman Lab.
Unfortunately, my time in the Schiffman lab has ended. However, I can say that we are currently working on publishing our research regarding the poster presentation I gave early this year at AACR. Leiomyosarcoma poly-aneuploid cancer cells form in response to chemotherapy and contribute to chemoresistance
What is next for you on your career path?
Currently, I am working as a clinical research coordinator in the Department of Pediatric Neurology at the University of Utah. During my time here, I will manage several clinical trials for children with rare muscular and neurological diseases. I have recently made this transition so I am still absorbing so much information about my new role. But so far I’ve been thoroughly enjoying it and think it will be an immensely positive experience. My long-term goal is still pursuing medical school and it is something I hope to achieve in the near future.
Having experienced osteosarcoma from different perspectives, as both an osteosarcoma patient and a researcher, what would you want both researchers and clinicians to know about the patient experience?
For researchers, I think it is so important to know how much you are valued within the patient community. Being stuck behind a lab bench most days, it’s very easy to lose sight of the value you bring to the table as progress can be gruesomely slow. More likely than not, you do not see the direct benefit of your hard work and dedication to patients. But I think it is safe to say, that without all the sacrifices you all make, patients and families would lose hope.
For clinicians, I believe it is important to stress just how meaningful every interaction between you and your patients is. The consistent confidence my oncologist and orthopedic surgeon instilled in me to ensure that I received the best care possible provided a sense of calmness during an incredibly stressful time.
