Tom’s Legacy: A Life of Tenacity, Love and Hope for the Future 

Guest blog post by Connie Kostelnik, wife to Tom Kostelnik and caregiver:

“Tom was no stranger to hard work or perseverance. A scholar-athlete at heart, he played football for the University of Notre Dame in the mid-sixties, bringing with him the grit and determination that would define his life. Those qualities served him well, both on the field and beyond, but they became especially evident during the most challenging period of his life. 

Tom was being monitored for melanoma by his dermatologist, and for a while, it seemed manageable. But life took an unexpected turn when he suffered a hemorrhagic stroke. Rushed to the hospital, he underwent emergency surgery to stop the bleeding, only to discover a brain tumor. That moment marked the beginning of a grueling 14-month journey filled with countless doctor’s appointments, radiation treatments, and PET scans. 

The effects of the stroke were profound—Tom lost his speech and writing abilities, which had always been an essential part of who he was. Yet, his tenacity never wavered. He threw himself into rehabilitation, working with speech and occupational therapists who challenged and supported him every step of the way. Slowly but surely, Tom regained his ability to speak and write, even returning to one of his greatest passions: golf. 

Tom’s resilience was nothing short of inspiring. But the road was far from easy. He began to experience seizures, endured further hospitalizations, and faced another brain surgery when swelling in his brain became critical. The second surgery, however, took a heavy toll. He lost his speech once more and, perhaps most heartbreakingly, his will to fight seemed to fade. On May 19, 2018, after a final seizure, Tom passed away. 

Tom and I were married for just shy of 52 years—a remarkable number, as it was also his football jersey number at Notre Dame. He was the one-time love of my life. We shared so much, including a commitment to giving back. When we retired to Arizona in 2010, we made the decision to donate our bodies to the University of Arizona’s Willed Body Program for research. The care and compassion shown by the program during such a difficult time were extraordinary. After a year of research, I attended a beautiful memorial service honoring all the donors. I chose to bring Tom’s cremains home, where he remains with me every day. 

Tom’s passing brought a sense of reflection about the connections between melanoma and brain tumors, especially given his family history. His mother passed away from a brain tumor, and his older brother recently succumbed to complications from Alzheimer’s—conditions that also affect the brain. It’s a sobering reminder of how much we still have to learn about these diseases. 

Tom’s memory fuels my commitment to melanoma research. Supporting the Melanoma Research Foundation (MRF) is my way of honoring his life and helping others who face similar battles. I believe in a future where earlier detection, better treatments, and advanced research give families like ours more time—time to share more stories, play more rounds of golf, and cherish more anniversaries. 

Tom’s strength, determination, and love continue to inspire me, and I hope his story inspires others to support the fight against melanoma. Together, we can make a difference—for Tom, for those we love, and for future generations.”