Peer Reviewed Cancer Consumer Reviewer
In high school I always considered myself to be an over-achiever. I played two instruments, participated in two varsity sports, and played soccer on a travel team outside of school. I also volunteered, worked, and maintained a social life. Yet, that was typical at my high school, as I went to the largest school In Minnesota. It was nearly impossible to stand out with a class of roughly 1,000 students doing the same overachieving activities. As a freshman I made the varsity cross-country and track team. I had high aspirations; I wanted to go Division 1. I thought running was going to set me apart from my classmates, but I couldn’t have been more wrong. Unbeknownst to me, a tumor started growing early in the spring of my freshman year.
Being a stage IV cancer survivor at 16 was what set me apart from my classmates. After 6 months of grueling back pain from a running “injury,” on December 1, 2015, I was officially diagnosed with stage IV Ewing sarcoma and given a 30% chance of survival, as the tumor had spread from my sacrum to my lungs. Prior to this diagnosis I was misdiagnosed on four separate occasions. I desperately sought out doctors and chiropractors, trying to determine what was wrong with me. I was told that I had a broken tail-bone by a specialist, sacrum joint dysfunction by a chiropractor, an abnormal bone cyst by a respected high-up doctor, and lastly, “We’re not entirely sure what you have, but it’s not cancer.” Sarcomas tend to go unnoticed for about 4 to 6 months, so my story isn’t an anomaly, unfortunately.
At 16, I found myself questioning life. Why did I get cancer? Why did I survive cancer when so many others with my same diagnosis didn’t? I knew I wanted to pay it forward. Halfway through my treatment, a non-profit organization, The Truth 365, reached out and I started volunteering with them. We did photoshoots and public service announcements to raise awareness about childhood cancer. Through them I was given the opportunity to speak on the New York Stock Exchange on behalf of St. Baldrick’s Shave-For-a-Cure. I’ve spoken on Capitol Hill with politicians to advocate for more funding toward pediatric cancer. I am currently involved with a foundation called Rein In Sarcoma. I’m a keynote speaker at fundraising events, I help with relationship management, and I’ve had the pleasure of being their corporate communications intern.
Rein In Sarcoma nominated me to participate In the Peer Reviewed Cancer Research Program (PRCRP). As a consumer reviewer, I determine the impact each proposal has on cancer patients. I feel like PRCRP has done a fantastic job providing me with a platform to voice my story. I’ve dealt with a lot of long-term side effects from the toxic chemotherapy I received 5 years ago. For starters, I was diagnosed with infertility at 17, I have terrible muscle atrophy in my legs, and chronic pain. As a consumer reviewer, I have a chance to prevent others from experiencing these same side effects. I feel so fortunate to have this opportunity to truly make a difference in the cancer world.
Despite the fact PRCRP was remote this year (thanks, COVID) I felt like they excelled in adapting to the virtual world. The support and communication were spectacular. My Scientific Review Officer sent emails almost daily, and I knew the entire team was on the same page due to the increase in communication. During the teleconference, the technology worked seamlessly. Everyone was so accommodating and willing to work through whatever issue that could come about. The perseverance of PRCRP was inspiring. The passion was evident – those at PRCRP wanted to make our virtual experience just as meaningful as if the conference was being held in person. I’d say they went above and beyond!
Further, I was able to build relationships with the other team members. The scientific community took the time to answer my questions and simplify the answers in a way I could understand, since I’m a business communications major. After serving on multiple panels, it is clear my voice is heavily influential, and I feel like a crucial member of the team. PRCRP has repeatedly emphasized that the patient perspective is the most valued role since, at the end of the day, the work we’re doing helps people Like me have a greater chance of survival with fewer long-term complications. Working with PRCRP is one of the most rewarding experiences I’ve had in my lifetime. I know I am directly involved with making huge strides in the medical community, and it’s like my diagnosis had a purpose – to give back to the cancer community. Not only is PRCRP changing the lives of cancer patients, they’re changing the lives of cancer survivors as well. Through them I found the “why” as to why I was diagnosed with cancer. It’s to do whatever I can to help the cancer community, and PRCRP has helped me achieve this dream.
Last updated Tuesday, July 20, 2021