by Sam Sentelle
Posted on March 20, 2018
Survivor offers help for childhood cancer victims
March 20, 2018
In 1974, Brett Wilson was diagnosed with acute lymphoblastic leukemia. “At that time,” Wilson told Putnam Rotarians today, “there was a 20 percent chance of children in the area overcoming the childhood cancer. “I was treated at CAMC. I had five years of treatment with chemotherapy radiation and cranial radiation. That was the treatment they gave children back then. “I went into remission for a year after my treatment. And then I got non-Hodgkin’s lymphoma. I was diagnosed with my non-Hodgkins at nine.
“During the non-Hodgkins I ‘blue-coded’ twice,” he said. “I have what is called a difficult airway. My trachea is only so big. “So when they gave me anesthesia, then they combined non-Hodgkins that was wrapping around my larynx, God was gracious enough to get me out of that mess. “
Wilson was raised in Charleston by his parents. His grandmother described him as “a walking miracle.” And as a two-time survivor of childhood cancer, Walking Miracles was the name he gave to his nonprofit family foundation to help others. He earned a Master’s degree from Marshall in community agency counseling and became certified by the Harold Freeman Patient Navigation Institute
Walking Miracles now is working through 15 hospitals in the tri-state area to provide treatment transportation for patients in 33 counties in West Virginia. Applications are provided at the hospitals, and the foundation provides $500 per year to families who need special assistance. “Travel costs should never be a barrier to treatment,” said Wilson.
Neurocognitive testing is available. Chemo for youngsters often causes cognitive issues. “Kids can have problems remembering stuff. They can have process issues with reading comprehension, and with math. “Just because a child has symptoms of ADHD doesn’t necessarily mean they have ADHD. These drugs can mimic the same issues.”
The Walking Miracles Foundation assists families with the many hidden costs of childhood cancer treatment. Most families, Wilson said, will need to spend as much as 38 percent of their income on travel, meals, and lodging for pediatric treatments. The foundation helps to offset these costs. Wilson’s team also offers “survivorship clinics” and access to resources for families.
“Survivorship education is important,” said Wilson. “More children now are being successful with treatments, but many problems come after the fact. “In my case, all the radiation they did to get me to be able to breathe — it damaged my heart and caused me to have scaring in my lungs. “There are issues with other physical problems. We sometimes have issues with speech problems.”
Often there are problems with metabolism leading to obesity. The foundation retains a chef to advise on nutrition needs. “There are so many things that go on when you’re going through these trials that we want someone there to help you,” he said.