August marks one year since we lost Kasey Vivian Zachmann. She was 10 years old. Over the course of four years, Kasey endured 10 surgeries, 45 proton radiation treatments, multiple rounds of chemotherapy, and two clinical trials, and through all of it, she never lost her smile.
To mark this anniversary, we are honored to share a reflection written by Jay Spitulnik, Kasey's maternal grandfather. Jay's words carry the kind of love and clarity that only comes from someone who was there, someone who watched Kasey light up every room she entered, and who has spent the past year learning to carry both grief and pride in equal measure.
The
Kasey Zachmann Fund for Medulloblastoma Research was established in her honor to ensure her fight advances the science for every child who comes after her. We hope Jay's reflection touches your heart as it has ours.
As many of you know, Kasey Vivian Zachmann was my first grandchild. So there were things we had to learn together. I had to learn to be a grandparent, and she had to learn to be a person and a grandchild. For six years, we seemed to be doing okay, but then in late June of 2021, a month before her sixth birthday, everything changed. Her fight was starting.
Throughout her battle, you always knew that Kasey was thinking as much about you as you were about her. The last time I was with her in person was the Christmas in June celebration in 2025 – a special summer gathering that brought the joy of the holiday season to Kasey and the people she loved. That afternoon before the celebration, I sat next to Kasey at the lunch table. At one point, she put her arm through mine, put her head on my shoulder, and said “Grandpa, I’ve missed you so much. I’m so glad you’re here.”
One of the incredible things about Kasey was that she never lost her beautiful smile. When we were with her or saw her parents’ many pictures, there was always a smile on her face. Even when we knew she was uncomfortable from treatments or from the impacts of the cancer, she was smiling.
Kasey’s smile was both inspiring and, to me, painful. We knew that she knew she was sick, but how much did she know about the inevitable outcome?
When I’m asked what I wish had been different for Kasey and other children facing medulloblastoma, there’s one thing that is the first on my mind. I wish there was a cure for this disease. I wish that Kasey, her parents, her sister, and all of us who knew her and loved her, did not have to go through the agony of fighting then losing this battle.
There are numerous things that come to mind that I thought about during the four years after her diagnosis. One of the big things is that in 1999, one year before Kasey’s mother, Alyssa, graduated from high school, my mother lost her battle with multiple myeloma. When she was first diagnosed, we were told there was no treatment and no cure and that she had six to eighteen months. She lasted four months. For years after she passed, my siblings and I donated a lot of money to finding a cure for this disease.
You may be asking - what does this have to do with Kasey, medulloblastoma, and Lilabean? Well, that giving made a difference I couldn't have imagined at the time. A few years after my mother’s passing, one of my friends was diagnosed with multiple myeloma. He was treated with a drug whose development was partially funded by money my family donated. Many years later, my friend is still alive after having been diagnosed with a disease that had been untreatable and incurable in 1999. I’m hoping, as a grandfather, that the work done by Lilabean will lead to similar experiences of longevity for pediatric brain cancer patients and their families, particularly those with medulloblastoma.
This month will be the one-year anniversary of Kasey’s passing. It’s hard to express the emotions we’ve experienced over the past year. Knowing that your 10-year-old granddaughter’s passing is imminent was tough, but it’s difficult to describe how we’ve felt and dealt with it since then. One of the most incredible things we’ve observed is the impact that little girl had on so many people. I keep wondering what this amazing girl could have done if she had been allowed to grow up. Any time I think of Kasey, it’s with intense sadness coupled with extreme pride. I don’t want other grandparents to experience what we’ve experienced, but if they have to, I hope it’s with similar combinations of grief and pride.
This past week, we had an experience that tells us how Kasey will always be remembered. Many of you know that if you hold a DVD or CD near a light, you see a reflection of rainbows. Kasey’s 4-year-old cousin was looking at the rainbows on a CD and told us that Kasey was with us. For any of you who knew Kasey, will you ever be able to look at a rainbow again without thinking of that beautiful little girl?
There are three things I’d like everyone to know about this terrible journey. First, it’s okay to grieve. Second, there are people who are willing to listen to you, to sympathize and empathize with your extreme emotions, and to allow you to express your grief however it is best for you. And third, don’t let your grief totally overcome the many great memories you have of your time with your loved one. We’ll always mourn Kasey, but we’ll always be proud of the tremendous impact she had on our world.
