Patients & Care Partners

Family has always been at the heart of my life. Growing up in the Midwest with two older brothers, I dreamed of building a close-knit family of my own. By late 2017, my wife and I had a one-year-old son and were expecting another child. Life was busy, but I couldn’t shake a persistent fatigue and abdominal pain. At first, my doctor thought it was muscle strain, but my symptoms worsened. Encouraged by a concerned coworker, I pushed for more tests.

Just days before my daughter’s birth in February 2018, I received a life-changing call: suspected sarcoma, with a large tumor on my abdomen and spots on my liver. The diagnosis was gastrointestinal stromal tumors (GIST), a rare cancer. The news was overwhelming, especially as my wife was about to give birth. My oncologist explained that surgery wasn’t possible due to the size and spread of my tumors. Instead, I started on a targeted therapy called tyrosine kinase inhibitors (TKIs).

The response was rapid. I was able to welcome my daughter home and, for a while, life felt normal again. My first scan showed shrinking tumors and improving blood work. Encouraged by my mother, I sought out a GIST specialist, knowing how important it was to have expert guidance for such a rare disease. The specialist’s experience gave me confidence and hope.

After 16 months of stability, a scan revealed new tumor growth. My medication dose was doubled, buying me more time, but fear crept in, especially as we learned our family was growing again. Would I be there for my children’s milestones? When further scans showed continued progression, my doctor enrolled me in a clinical trial for a new treatment. The decision was daunting, but research and trust in my specialist helped me move forward.

Traveling every two weeks for treatment was challenging, but my first scan showed my tumor had shrunk. By the time my son was born, I was feeling better and more hopeful. Today, I’m still on the clinical trial treatment, working full time from home, keeping up with my three kids, and even playing water polo with coworkers. My wife’s unwavering support has been my anchor.

My journey with GIST has taught me the importance of persistence, expert care, and hope. For others facing rare diseases, I want you to know that there are options and opportunities for stability. Working with a specialist opened doors to treatments that have given me years of precious time with my family. I remain optimistic that I’ll be here for the moments that matter most.