My name is Scott Lenfestey and I’m 13 years old and from Cary, North Carolina. I’m also a cancer survivor. I was diagnosed with acute lymphoblastic leukemia when I was 3 years old, and I went through 3½ years of chemotherapy.
Life with cancer was really hard—I wouldn’t wish cancer on anyone. I often felt weak and nauseous, and I missed out on a lot of things that are part of a normal childhood, like going to school and playing at friends’ houses. As much as I wanted to be with others, the risk was just too high, and I wanted to avoid any setbacks with my treatment. By the time I finished treatment, I had taken more than 1,500 pills and had been on chemo for more than half of my life.
Those years were so challenging for my family and me, but I know how fortunate I am to have this second chance at life. I’m so grateful for all the children with cancer before me who participated in clinical trials. It’s because of them that I’m still here! Less than 100 years ago, most kids with my diagnosis didn’t survive, and now about 90% survive 5 or more years.
I wish this was the case for all kids with cancer, but it unfortunately is not, and I’ve known so many kids who have died from this awful disease. Although progress has been made in the treatment of some childhood cancers, there is still a very long way to go for many other cancer types. Kids don’t have time to wait.
Childhood cancer is one of the leading causes of death in kids living in the United States. We need everyone’s help to change this. As a survivor, I feel like it’s my mission to help other kids with cancer who are fighting for their lives. I meet with my members of Congress every year as part of Childhood Cancer Action Days to help advocate for legislation that can improve the lives of kids with cancer. I also speak at local events to raise childhood cancer awareness, served as the opening speaker for the 6th Annual Congressional Childhood Cancer Summit, and provided congressional testimony in support of Childhood Cancer STAR Act funding just last year.
I may have finished treatment, but my job isn’t finished yet because we need more treatments for kids with cancer and a cure someday. My hope is that one day soon, all kids who survive cancer will be able will be able to go on to live long and healthy lives.
STAR Project
CDC’s National Program of Cancer Registries is helping make data about childhood cancer available for research faster. Now, it takes about 2 years for information about cancer cases to be published. But the Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2017 (also called the Childhood Cancer STAR Act) requires that data be available within weeks of diagnosis. CDC’s STAR Project is working toward that goal.
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