Stanley Kuzmickas Feeney Fund for Pediatric Cancer Research

In December 2015, our family was preparing for the holidays. The tree was up, the air smelled of cinnamon and pine, and our home was filled with the warmth and glow of Christmas lights. Stanley was 13 months old. He had only been walking a few weeks, and was using his newfound freedom to investigate the ornaments within his reach. We were "normal" –a mother, father, sister, and brother enjoying the hope and promise of the season.

Everything came crashing down one night when we thought Stanley swallowed something. He was gagging and drooling, so we rushed him to the emergency room. By the time we made it there he was fine, but we figured we had come all that way and it was probably smarter to just have him checked out. The ER doctor wanted to do a chest x-ray to make sure nothing was lodged anywhere, and while we waited for radiology he decided to do a full exam. When he felt Stanley’s abdomen he realized his spleen was enlarged. The next nine hours were a whirlwind; labs were ordered, they placed an IV, an ambulance came and whisked us away to The Cleveland Clinic. Nine hours with no answers, no information….just fear, panic, and the deep, sinking feeling in our guts that something was very, very wrong.

The next evening, after a day of doctors, examinations, and bloodwork, we were taken to a conference room. I distinctly recall walking in the room and fixating on the tissue boxes on the table. I remember thinking, ‘they think I am going to cry…they have to tell me something that will make me cry.’ And just like that, our lives changed. Our son had cancer and we would never, ever be the same.

We spent the first couple months feeling completely overwhelmed. We had to adjust to our new normal, and everything felt so surreal. But soon, we became very aware of our powerlessness. We had no control. The cancer surely seemed to have more control over Stanley’s life than we did, but it was more than that; the doctors, the pharmacists, the insurance company….everyone involved in Stanley’s care seemed to have more power than we did. It was during that time that we discovered the St. Baldrick’s Foundation. We learned how severely underfunded childhood cancer is, and about St. Baldrick’s efforts to bridge that funding gap. My husband and I spent nights online, reading through St. Baldrick’s website, pouring over information about childhood cancer treatments, research, and funding. And just like that, we saw a way regain some control. There was something we COULD do. We found a way to take some of our power back.

We held our first head-shaving event, the #StoshyStrong Shave-a-Thon, in July 2016. Stanley was still in frontline treatment, and we had zero experience organizing a fundraiser. Neither of us really knew what we were doing, but somehow we did it.

And we knew it couldn’t stop there.

We are now fully committed to doing what we can to help St. Baldrick’s efforts. Our hope and ultimate goal is that there will be new discoveries in therapy, and that one day our children will no longer have to endure a one-size-fits-all approach to treatment. We believe in a future where treatment will be personalized for each unique child—a future with less long-term side effects and more cures.