Childhood Cancer STAR Act

Excitement filled the air as racers both big and small gathered for the inaugural JUST TRYAN IT triathlon in NC on the brisk morning of May 1st at Chapel Hill Country Club. Seven-year old, Scott Lenfestey, was pumped with adrenaline as race time approached…not just because of the race, but also because he had the support of family and friends who joined him as fellow racers, and also at the finish line.

This Spring marked a huge milestone for Scott – his one year anniversary of completing treatment for leukemia. Diagnosed at 3 years old with acute lymphoblastic leukemia, Scott went through nearly 3 ½ years of chemotherapy that included medications injected into his spinal fluid, daily medications at home, and frequent trips to the hospital. Numerous side effects accompanied the treatment. During the first month of chemotherapy, steroids caused Scott’s muscle tone to decrease so significantly that walking became problematic and he resorted to primarily crawling or being carried early on. Other side effects included hair loss, stomach pain, anemia, appetite changes, nausea, and lack of energy.

In addition to not feeling well, he also missed out on activities that most kids get to do, like attend school, play with friends, and attend get-togethers with extended family in order to reduce exposure to germs and to stay as healthy as possible.  Despite all the challenges experienced at a young age, Scott and his family know how fortunate they are that he has made it through treatment and is able to catch up on fun activities that he missed while still sick.

During the past year, Scott started school for the first time and has worked hard to rebuild his muscle tone, strength, and endurance. What better way to commemorate his one year anniversary than to compete in his first kids’ triathlon? JUST TRYAN IT provided the motivation and goals he needed to work toward repairing some of the damage caused by chemotherapy. The triathlon also provided an invaluable opportunity to give back by raising awareness and funds that will benefit local families of children with cancer at UNC Children’s and Duke Children’s Hospitals.

“Having a child with cancer was the most stressful and challenging time of our lives,” said Scott’s mom, Nancy Lenfestey. “It’s hard on the entire family emotionally, physically, and financially. We’ve heard many families struggle with how they’re going to pay their rent or fix their car, on top of all the medical bills. Thankfully,JUST TRYAN IT exists to help these families when they need it the most.”

The race was symbolic – many compare cancer treatment to a marathon that requires patience and endurance. It also helps to have a support system as you train and run the race. Scott was delighted to have the support of his 10-year old brother, Nick; 8-year old cousin, Noah, and friends Josh and Leah competing with him that day, just as they had been there to provide support during his treatment. It was undoubtedly an anniversary to remember and cherish.

What’s next?

Thankful for the ability to resume a more normal life again, Scott has become an active advocate for childhood cancer and recently returned from his third visit to Capitol Hill to discuss the Childhood Cancer STAR Act and the need for more pediatric cancer research funding. However, he also already has his sights set on next year’sJUST TRYAN IT triathlon.

“Well, this year I just wanted to my best and hopefully complete the race! Now that I know that I can do it, I want to work on improving my times. Yep, I’ve got some goals in mind and some things to work on, but I’ll get there…better and stronger.”