Interview with Brett Wilson of Walking Miracles Family Foundation

Ashley Hay, BSN, RN, BSN, RN

With the recent passing of National Cancer Survivors Day on June 4th, his incredible journey seemed like the perfect one to explore. Read on and get to know Brett and how he turned being dealt a bad hand into a helping hand for others.

Although our meeting started with several technical difficulties on Skype, we both had a good laugh about it and eventually conducted our interview. Brett is not only lighthearted but also incredibly passionate about the work he does and the patients he serves. He was so happy about a recent win for his foundation, we hardly got through introductions before he wanted to tell me all about it. It's this kind of attitude, bursting with excitement and energy, that I'm sure draws many to him as a public speaker and comforting patient navigator. His compassion for serving others is evident. Having walked in their shoes, he is the perfect person for the job.

Brett was diagnosed with ALL (acute lymphocytic leukemia) in 1974 and NHL (non hodgkin's lymphoma) in 1982. There are little words to use when having to imagine surviving such an experience not once but twice. I asked Brett if news of the second diagnosis ever changed his outlook. What kept him positive? "I was devastated," he said "without my mother I wouldn't be where I am today. I remember her telling me 'We'll do this together'". And so they did. Many years into survivorship, his mother is still by his side (I even heard her come in for a brief moment during our meeting together). Having a support system is invaluable especially when interwoven with loved ones.

Brett went through a combined total of 8 years on treatment including cranial, neck & chest radiation and the CHOP protocol (a chemotherapy regimen including cyclophosphamide, doxorubicin, vincristine and prednisolone). While survivorship is certainly something to celebrate, it can also come with many lasting long term side effects. Since entering into survivorship Brett has had two pacemakers, an aortic valve replacement, his gallbladder removed, and continues to persevere despite unilateral loss of eyesight and neurocognitive issues. When asked what being a cancer survivor means to him, he states, "I've overcome odds that no one expected [me to]. I'm a faith based person. I can relate to people on a level [others] can't because I have walked in their shoes".

When asked what prompted him to start the Walking Miracles foundation, Brett stated, "We had no resources in our community to help us once we came home from the hospital. I started studying the new standard set by the College of American Surgeons for cancer care and survivorship. I wondered why that didn't roll down into pediatrics. Survivorship just wasn't considered a need at that time". Walking Miracles currently assists families by providing financial assistance to help offset the travel costs to and from the hospital. The foundation is also available to help families navigate the healthcare system during and after treatment - making sure they stay connected to a support network and have proper medical surveillance during survivorship.

I asked Brett to describe his healthcare experience overall...in one word. Not an easy task. "Trying. Having to figure everything out on your own. Finding information and resources on your own" he says. When discussing nursing care while in treatment he states, "My mother and I know all the nurses from back then, all five were our absolute support system. Without the nurses we would have never made it through". His willingness to help families navigate through the rough seas of healthcare as someone who has charted the course previously is nothing short of admirable. Brett's endurance and positive outlook is one we can all learn from, provider or patient. In closing he told me, "[i've] overcome adversity through support and determination. You decide who's going to make your destiny. When you go through what [i have] there is no quit. I am not defined by this. It can make me stronger".

Links:

Walking Miracles - Childhood Cancer Services in West Virginia

LinkedIn Brett Wilson

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Interview with Brett Wilson of Walking Miracles Family Foundation

About Ashley Hay, BSN, RN, BSN, RN