Scott Lenfestey is my name and I’m from Cary, North Carolina. In addition, I am a cancer survivor. As a child, I was diagnosed with acute lymphoblastic leukemia, and I underwent 312 years of chemotherapy.
Cancer was a very difficult experience. I would not wish cancer upon anyone. Often, I felt weak and nauseous, and I missed out on a lot of childhood experiences, like going to school and playing with friends. Despite how much I wanted to be with others, the risks were just too high, and I wanted to avoid any setbacks in my treatment. Over 1,500 pills and more than half my life had been spent on chemotherapy by the time I finished my treatment.
My family and I had such a challenging time during those years, but I know how fortunate I am to have this second chance at life. Thank you to all the children with cancer who participated in clinical trials before me. Without them, I wouldn’t be here! About 90% of kids with my diagnosis survive more than five years, compared to less than 100 years ago.
I wish this was the case for all kids with cancer, but it’s not. I know so many kids who have died from this awful disease. For many other cancer types, although progress has been made in the treatment of some childhood cancers, there is still a long way to go. Children cannot wait.
Childhood cancer is one of the leading causes of death in children living in the United States. We need everyone’s help to make a difference. My mission as a cancer survivor is to help other kids who are fighting for their lives. In addition to Childhood Cancer Action Days, I meet with my members of Congress every year to advocate for legislation that can improve the lives of kids with cancer. In addition to speaking at local events, I also write articles for national websites. I spoke at the 6th Annual Congressional Childhood Cancer STAR Act Funding event just last year.
It may be that I’m done with treatment, but my job isn’t done yet since more treatments are needed for kids with cancer, as well as a cure someday. One day soon, I hope that all children who survive cancer will be able to live long, healthy lives.
Data about childhood cancer are being made available for research faster thanks to CDC’s National Program of Cancer Registries. Information about cancer cases is published about every two years now. Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2017 (also known as the Childhood Cancer STAR Act) requires data to be made available within weeks of diagnosis. That is the goal of CDC’s STAR Project.