Inspirational Stories

My mother and I being diagnosed with stage II Hodgkin lymphoma (HL) only six weeks apart from each other was not what I anticipated receiving for my 16th birthday. Braces, being my homeroom representative, volleyball tryouts, and getting my driver's license are the things I thought I would be navigating at this time. Instead, I spent my 16th year in pediatric oncology, receiving treatment at the same time my mom was receiving care in adult oncology.

Despite having the same cancer diagnosis, we had different treatment plans and did not respond to chemotherapy or radiation in the same way. And what I find so humbling is that nothing could be totally predicted or anticipated based on each other's experience. We had the same cancer and entirely individual experiences.

In 2012, social media, streaming services, video conferencing, and the resources for teen patients in the community were nothing like they are today. Talking about the latest episode of The Bachelor with my nurses was the closest thing I had to peer connection. My mom, being in adult oncology, had significantly more resources available to her because of her age, and this illuminated the gap in support that existed for me as an older teen. I was either too old for the resources for pediatric patients or too young for the myriad of resources that existed for adult cancer patients.

Once in remission, I felt motivated to do something for other youth who were experiencing similar isolation. I began a school club called Escape with the goal of collecting donations for age-appropriate art supplies, movies, games, and books for adolescent and young adult cancer patients at my pediatric cancer center. Following high school, I went on to a four-year college, and at this point, I still hadn't connected with anyone my age who had been through cancer. At this time, I was also coming into my identity as queer and non-binary.

In my freshman year of college, I attended a national conference for adolescents and young adults experiencing cancer. Connecting with peers my age, learning about the resources at The Leukemia & Lymphoma Society (LLS) for the first time, and being introduced to other support organizations for teens and young adults genuinely changed my life. I realized I wasn't alone.

I stayed involved with this conference, and at the 2018 gathering, I facilitated a peer support space for those of us who identified as LGBTQIA+ and AYAs. Following the session, participants asked if there was a way we could connect outside of the conference. I took down everyone's contact information and made a private Facebook group. This is when Escape reemerged but with an entirely new purpose.

The Facebook group quickly grew beyond our small group from the conference. Two years later, when the COVID-19 pandemic began, I made a website for people to find the Facebook group. Escape quickly became much bigger than I could have anticipated. Before I knew it, we were running virtual peer support groups, building community partnerships, and spreading awareness about the experience of being LGBTQIA+, an AYA, and a cancer patient. Escape became a place of solace, found family, and the only organization dedicated to serving this specific population.

While I would not characterize my diagnosis as a blessing or something that was meant to happen, I am thankful for the ways I was supported after cancer and for the tools, resources, and love that have given me the capacity to create a space for this vibrant, incredibly special community of LGBTQIA+ AYAs