In our monthly patient and caregiver stories, we share our community’s stories because each GIST journey matters. Your experiences as a rare disease patient or caregiver create a tapestry of strength, resilience, and shared understanding. By sharing, you not only break the chains of isolation but become a beacon of hope for others facing similar challenges. Together, these collective narratives shape a powerful force that drives awareness, research, and advocacy. Your voice matters, and by sharing your story, you contribute to building a stronger, more connected, and empowered rare disease community. Help others realize that even though they battle a rare disease & that each GIST case is unique, they are not alone.
Our Patient of the Month for March is Barney Mulvihill. Here is his GISTory:
Barney’s GISTory
Barney, California, USA
I am a 44-year-old father of two wonderful kids, Harry and Alannah. My wife Emma is a hairdresser, and I work in the medical device industry developing prosthetic heart valves. I have worked in that field for about 15 years.
Before my diagnosis I lived a very active lifestyle. I regularly ran 10km, played soccer, and went to the gym. Emma and I both grew up in Ireland. In 2016 my work offered our family the opportunity to move to Southern California. It was a big change from our life in Galway on the west coast of Ireland, but we saw it as an amazing adventure for our young family. The original plan was to stay three years. That was ten years ago. We built a wonderful life in Southern California and were enjoying a very normal, family-focused life. Then everything changed.
May 7th, 2025, is a date I will never forget. I had to leave work early because I was experiencing severe abdominal pain and went to the emergency room in Mission Viejo. I assumed it was something minor — maybe indigestion or gallstones. Instead, after several scans, a doctor came into my room late that night and told me something I never expected to hear. There were large tumors in my stomach and liver and they appeared cancerous. Cancer had never affected our immediate family before, so the news was completely shocking. At first, I honestly thought the doctor must be mistaken. I simply couldn’t process what I was hearing.
In that moment I was told the situation looked very serious. That night I stayed awake, alone in the hospital doing two things: thinking about how I would tell Emma and my family and writing letters to my wife and children.
The following morning, I underwent a liver biopsy. Later that day I was lying in the hospital room trying to distract myself by watching television. By coincidence, it was the day the new Pope was elected, and I watched the white smoke appear live on TV. The hospital also sent a priest to visit me. I congratulated him on his new boss, and he said some prayers with me. I’m not particularly religious, but it’s amazing the small moments of kindness you remember when life suddenly turns upside down. One of the hardest things I had to do was break the news to my wife, Emma. We cried for a long time before leaving the hospital in complete shock and uncertainty for the future. We told our close neighbors and friends, Katie and Ryan, and the tears started all over again.
About two weeks later the biopsy results came back and I heard a word I had never heard before: GIST — gastrointestinal stromal tumor – which is a type of sarcoma cancer. Perhaps it’s the engineer in me, but I immediately began researching everything I could about the disease and the best specialists who treat it. The ER doctor who cared for me that first night showed incredible compassion and kindness in the following days by staying in touch, something I will never forget. During my research, I also discovered the incredible resources provided by The Life Raft Group. I spent days and nights watching videos, reading patient stories, studying research papers and learning everything I could about GIST. That knowledge helped me begin to understand the path ahead.
Through my research I was fortunate to connect with Dr. Jason Sicklick at UC San Diego, one of the leading GIST specialists in the United States. I also met his colleague Dr. Paul Fanta, also a leading oncologist specializing in GIST. From the moment I met them I felt I was in the right hands. Initially I was treated with imatinib (Gleevec), but we soon learned that my tumor carried the SDHA variant of GIST, which often behaves differently and may not respond well to standard treatments.
We also tried temozolomide (TMZ) but unfortunately scans showed continued tumor growth in my liver. Because controlling the liver metastases became the immediate priority, Dr. Fanta recommended Y90 SIRT (radioembolization) — a targeted radiation treatment delivered directly to the liver. I underwent two Y90 procedures, treating the left side of my liver first and then the right side.
Today my journey continues. My energy levels are not what they once were and fatigue is something I manage daily, but pain is currently minimal and we are hopeful that the treatments — including radiation and immunotherapy — are helping control the disease. The past nine months have been a challenging journey, and I know there may be more twists and turns ahead. But I also know I am not facing it alone.
Coping with a GIST Diagnosis
For me, coping comes down to staying informed, staying connected, and focusing on what matters most. The GIST community has been incredible. Through The Life Raft Group I connected with other patients and joined support groups, including a WhatsApp group for people living with SDH-deficient GIST. I try to stay informed about my condition and actively engage in my care. Understanding my scans, treatments, and options helps me feel more in control of the situation.Speaking with people who understand the same treatments, symptoms, and side effects has been incredibly helpful. I’ve also been deeply humbled by the strength and resilience of so many fellow GIST patients.
I also focus on continuing to live my life as normally as possible — working, planning, and thinking about the future all help to keep me distracted. Cancer may be part of my story, but it doesn’t define my entire life. Of course, my greatest source of strength is my family. Spending time with my wife and children reminds me every day why I keep fighting.
Talking With Our Kids
One of the hardest parts of this journey has been explaining my illness to Harry and Alannah.
Children understand more than we sometimes realize, and we try to be honest with them while also reassuring them that I am doing everything possible to get better. They have shown incredible love, empathy, and resilience throughout this experience. Harry and Alannah are still young, but I hope that one day they will look back on this chapter of our lives and see not just the challenges, but the strength and love that carried us through it.
My message to them is simple: be curious, be brave, and always take on life’s adventures — even when the path ahead is uncertain. Their hugs, their laughter, and even the normal everyday chaos of family life have become some of the greatest sources of strength and motivation for me.
His Advice for Fellow GISTers
My advice to anyone newly diagnosed is simple: Find a GIST specialist and connect with the community. GIST is a rare and complex cancer, and doctors who specialize in it truly understand the nuances of treatment options. Also, don’t be afraid to ask questions. Understanding your disease and treatment options can help reduce fear and empower you to make the best decisions for your care. Finally, I also strongly recommend connecting with patient groups like those organized by The Life Raft Group. Speaking with other patients who understand the journey can make an enormous difference.
Hobbies He Enjoys
Outside of work and medical appointments, I enjoy spending time with my family, traveling, reading, and working on home improvement projects. I’ve always enjoyed building and improving things, and that mindset has helped me stay positive throughout this journey. Most importantly, I treasure time outdoors and being active with my kids.
GISTLife Motto
A cancer diagnosis brings uncertainty, but it also brings brilliant clarity about what matters most.
One idea that guides me through this journey is:
“Focus your energy on what you can control and let go of what you cannot.”
And another reminder I carry with me:
“Hope is stronger than fear.”
My journey with GIST is still unfolding. There will likely be more challenges ahead, but I move forward with gratitude for the incredible doctors treating me, the support of the GIST community, and most of all the love of my family.
To anyone newly diagnosed with GIST who may be reading this: the early days can feel overwhelming and frightening. But knowledge, expert care, and a supportive community can make an enormous difference. Take things one step at a time, one day at a time, ask questions, and know that you are not alone. There is an entire community of patients, doctors, and advocates walking this path with you.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact our Data Mgmt. & Research Team, for more information: patientregistrydepartment@liferaftgroup.org
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