What does childhood cancer awareness mean to me? It means giving back to the community that has kept me alive.

At the age of 12, I was diagnosed with a chronic blood cancer called myeloproliferative neoplasms (MPN). I presented with a blood clot, causing my liver to fail, and I needed a liver transplant as well as oral chemotherapy to control my disease for the next seven years. A few years ago, ALSF-funded researcher, Dr. Linda Resar, was able to switch my treatment from chemotherapy to a new targeted therapy for my specific MPN mutation. 

My treatment plan moving forward is based on Dr. Resar’s research that Alex’s legacy helped to fund. My hope is to one day reach remission, something that wasn’t even a possibility without a bone marrow transplant when I was first diagnosed. In the meantime, my disease is the most stable it has ever been, and my quality of life has improved thanks to this targeted therapy.

Now, I’m 21 years old and an undergraduate student at George Mason University. It’s been a little over nine years since my diagnosis. Throughout my treatment, I became intrigued by the science that was keeping me alive and decided to pursue a career in the medical field. I had no idea when I met Dr. Jeffery Toretsky, Professor of Oncology and Pediatrics, while receiving treatment at Georgetown that he would become my mentor. He introduced me to his lab and bench research, and by summer of 2024, I was thrilled when he reached out to me about becoming a Pediatric Oncology Student Training (POST) grantee to do research in his lab. 

My POST grant summer was a full-circle experience for me – a cancer patient conducting cancer research. I am so thankful for the opportunity to walk into my hospital, not as the patient but as the researcher, giving back to the community that has kept me alive for nine years.

What made this experience even more personal was that Dr. Resar served as one of the mentors who moderated our research presentations. Knowing her research keeps me alive and well enough to do my own research is inspiring. I am beyond grateful that Alex’s legacy has allowed me to be in this position. 

About Madelyn

Myeloproliferative neoplasms (MPN) are an extremely rare group of blood cancers – especially in children. First diagnosed at age 12, Madelyn had a rare presentation of MPN that caused her liver to fail. While hepatologists worked tirelessly to stabilize her liver, she began an oral chemotherapy to treat her cancer. She underwent a liver transplant, and remained on oral chemotherapy for seven years until concerns arose regarding possible progression of her MPN. A specialist and ALSF-funded researcher helped Madelyn make the switch to a targeted therapy specific to her MPN mutation. Today, she is 21 years old and one step closer to reaching remission.

About Childhood Cancer

Each year, more than 17,000 children are diagnosed with cancer in the United States. While cancer names and types like leukemia or lymphoma may share a name with adult cancers, childhood cancers are quite different and often require different treatments. The average age at diagnosis is 10 years old (for an adult it is 66 years old). Children who have had treatment and survive childhood cancer are 95% more likely than their peers without a past cancer diagnosis to experience a significant health side effect by the time they are 45 years old. Learn more about childhood cancer and the work Alex’s Lemonade Stand Foundation is doing to make a difference here.