Patients & Care Partners

We’re Steve and Joyce, and our journey with GIST has taught us the true meaning of resilience, partnership, and hope. For most of my life, I prided myself on self-reliance. But everything changed one December morning when sudden pain and chills sent me to the emergency room. Within hours, I was in surgery for a ruptured tumor and sepsis, a terrifying and life-altering moment for both of us.

The diagnosis of GIST was overwhelming. We didn’t know what it meant for our future, but we quickly learned the importance of finding the right care. Joyce, my wife and caregiver, became my advocate, researching specialists, managing appointments, and supporting me through recovery. Her dedication helped us connect with a GIST expert who offered hope and a clear treatment plan. We learned that even with a rare cancer, there were options for a meaningful life.

Recovery was tough. Joyce managed my wound care and supported me emotionally, even as she faced her own fears and uncertainties. She kept me informed only as much as I wanted, shielding me from statistics that might have discouraged me. Together, we discovered the value of teamwork: attending every scan and appointment as a pair, asking questions, and remembering details.

Over the years, our journey has had ups and downs, numerous recurrences, and four surgeries. After my last recurrence when my tumor began to resist medications, we leaned on our faith and our community for strength. Joyce reached out to the GIST community and found a clinical trial that offered new hope. Starting the trial brought us optimism we hadn’t felt in years, and my first scan showed promising results.

Through it all, we’ve learned the importance of support, both from each other and from our wider circle of friends, family, and church. Joyce found outlets to process her emotions and discovered inner strengths as a caregiver and health advocate. We’ve made it a priority to enjoy life: walking our dog, playing Pickleball, and cherishing time with our children and grandchildren.

Our experience has shown us that living with GIST is challenging but not without joy. Advances in science and treatment have given us hope for the future. We encourage others facing rare diseases to seek out specialists, lean on loved ones, and stay positive. Don’t let GIST define your life; find joy in small moments, open up to support, find ways to give back, and trust that you can navigate the journey together.

Thank you for letting us share our story. We hope it inspires others to embrace hope, seek the best care, and cherish the support around them.