Ambassador Scott and the many pill bottles he went through during treatment.
Scott is a cheerful, hardworking 15-year-old who enjoys football, hanging out with friends, and traveling. His acute lymphoblastic leukemia (ALL) diagnosis at age 3 was a complete shock to his family, especially since he seemed healthy and never even had a sick visit to the pediatrician.
Since he was diagnosed as a toddler, he couldn’t fully understand that by the time he finished treatment 3 ½ years later, he would take more than 1,500 pills, have blood transfusions and countless spinal taps, unpleasant nebulized antibiotic treatments for immunosuppression, and spend more than half of his life on chemo.
Cancer disrupted life as he knew it and in addition to not feeling well, he missed out on many ordinary childhood activities during treatment like playdates, parties, and going to school. Around the time Scott turned five, he had lost multiple friends to cancer and the magnitude of childhood cancer’s emotional impact became more real.
Scott is an old soul and treatment and all the time spent in the hospital allowed him to gain a more seasoned perspective on life early on. One night while inpatient, Scott and his mom reflected on how much cancer changed his life and how fortunate they were that he was still trudging along towards the end of treatment with an exciting new beginning on the horizon. The pact they made that night to become lifelong childhood cancer advocates marked the beginning of Scott’s blossoming passion for advocacy.
Scott at the podium, ready to advocate for kids with cancer.
“I’ve known many kids who were diagnosed with my same type of cancer and at the same age who are no longer here. I don’t know why they are no longer here and yet I am…It’s hard thinking about that sometimes, but I’m incredibly grateful to still be here. Thanks to research, I’ve been given a second chance at life and this is what fuels me as a childhood cancer advocate.
I’ve been meeting with members of Congress on Capitol Hill since I was 6 because advocacy makes a difference and is something I feel called to do. Congress needs to hear from kids impacted by cancer because childhood cancer is the #1 disease-killer of kids in the US. I’ve lost count of the number of kids I know who have lost their lives to this monster. We have the potential to change outcomes for so many more kids with cancer in my lifetime, and I’ll do what I can to make it happen.”
Now 12 years in remission, Scott is loving 9th grade and vroom vroom…He recently received his driver’s permit!
Scott practicing his newly acquired driving skills.
“While Scott was in treatment, I remember wondering how many kids make it through 3 ½ years of chemotherapy and hoping and praying that he’d go on to live a long, healthy life after cancer. Seeing him grow up and learn to drive, attend school football games and dances…these things are normal for most kids, but for parents of kids with cancer, they’re more like bucket list items, since many of us sadly don’t get to witness these milestones.” – Scott’s mom, Nancy
Scott and his family.
Fortunately, since Scott’s diagnosis, new targeted therapies and advances in treatment such as chimeric antigen receptor (CAR) T-cell therapy have emerged that give kids with relapsed or treatment-resistant childhood acute lymphoblastic leukemia more hope for conquering the most commonly diagnosed childhood cancer.
Scott hopes that new treatments and cures can be found for all kids with cancer and shares this message for anyone thinking about getting involved in childhood cancer advocacy: “If kids having cancer bothers you in any way, we need your voice. We want to make childhood cancer a higher national priority and we can’t do it alone. Whether it’s making a trip to Capitol Hill, sending an email, or making a phone call from home, every voice helps…Please join us!”
Left: Scott at Capitol Hill in 2017, Right: Scott now in 2023.
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