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READ MOREPublished on June 30, 2024 in Share Your Story
Guest Author: Deirdre K. in New York
In July 2022, we heard the words a couple never wanted to hear. Mike had brain cancer. And not just any brain cancer — glioblastoma — the most aggressive, always terminal type.
We were faced with an onslaught of information, and surgery would occur within days and treatment within weeks. Even with a successful surgery, we were told to expect maybe 12-18 months. We had two kids. Our daughter was only 12 and our son was 15. How could this be happening? Even though I asked, “Why us,” my husband always said, “Well, why not me?”
Mike fought this brutal disease. Actually, we did. I became his researcher, his caregiver, and his advocate. We tried it all — the standard of care, chemotherapy that made him so terribly sick, a second brain surgery, and all of the above again. But through it all, Mike remained steadfast in his hope and belief that maybe he would get his miracle.
Sadly, that miracle never came. Mike passed away in my arms on April 10, 2024. But since January, he has been in hospice, and that’s when he truly taught us how to live. He relished his time with his kids and me. He savored every visit with friends. He would talk about the future — only weeks ahead at a time — because I think he knew what would eventually happen. In his last months, he showered the kids and me with all the love we would need to carry us through these dark, sad days.
Mike inspired his community, which raised over $40,000 for brain cancer research, by selling hats with the hashtag #Kennystrong emblazoned on them. These hats were worn at our town’s annual Thanksgiving Turkey Trot. I thought we would sell maybe 50. I lost count when we reached over 800 hats. Pictures across social media featured friends near and far wearing their hats to honor Mike’s fight.
Honoring Mike was easy to do. He was truly the nicest, most generous man we were lucky to call ours. He was known as the guy who would donate $20 to a kid’s lemonade stand for a single cup of lemonade. The neighbor who would plow the snow before leaving for work from every nearby neighbor. Mike was the dad in the stands at many sporting games who cheered as loud for every player as he did for his own kids.
Mike was truly one of a kind, and even glioblastoma couldn’t dampen his beautiful heart. At his funeral, I asked friends and family to donate gift cards to help other families going through this diagnosis. With Mike as their inspiration, friends and family donated well over 100 gift cards that will be shared with other families facing cancer treatment and/or hospice. Mike’s generous heart continues to inspire others.
We learned Mike had a brain tumor on July 16, 2022. Our lives were forever changed. Obviously many of the changes impacted us negatively. Mike tried everything, and as his primary caregiver, I never stopped researching new treatments. But that’s the problem. Brain cancer, specifically GBM, is a rare cancer and funding is so desperately needed to advance treatments and possibly a cure.
Life with glioblastoma is scary. It’s living each day as it comes. It’s filled with nasty side effects. It’s living scan to scan wishing, praying, and hoping. Life after diagnosis eventually becomes planning for life after the patient’s death and that is NO way for a young family- or any family to live. Anticipatory grief is horrible, and I pray that one day, advances can be made so that families can have hope — REAL hope.
But living with terminal cancer also taught us so much about life. It’s so very fragile. We learned to savor the small moments because life taught us no moment is small. We learned to celebrate EVERY moment and to say the things that were usually only written in our hearts. We learned that we had an unbelievable community that supported us in so many ways. We learned to find the beauty in the mundane, watching the snowflakes fall for the first time last winter, savoring a freshly brewed cup of coffee with friends, and wrapping each other in hugs.
Brain cancer, specifically glioblastoma, needs better treatments and a cure. I will never stop fighting for Mike and his memory. He lived his life with a generous and kind heart. I know he would want us to continue to fight for other families that may face this diagnosis in the future.
TAGGED WITH: glioblastoma, #GBMDay
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.