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 December is Alex Kozushin. Here is his GISTory:
Alex & Christi Kozushin, California, USA
Alex’s GISTory
This past August, I was officially introduced to “Clifford”—an 11 cm squatter tumor freeloading on my small bowel. For two weeks, I had all the classic GI issues you’d expect from what I *thought* was just a stomach bug. Twelve pounds lighter and in unbearable pain, my wife and I made the trek to the emergency room.
After a CT scan and three hours of suspense in a cold hospital room, a doctor drew the short straw and delivered the news: “You’ve got a tumor.” Lovely. With the help of The Life Raft Group, I quickly connected with two GIST specialists who, ironically, had *very* different perspectives. The one thing they agreed on? “Clifford” had to move out.
Eviction day came on October 30th, and Clifford turned out to be even more overbearing than we thought—measuring a final 14.5 cm x 10.5 cm. Now, I’m waiting on my pathology report to figure out the next steps. Most likely, my journey will include lifelong imatinib, but you know what? I’m grateful. Grateful we caught this. Grateful for the incredible support from The Life Raft Group. And most importantly, grateful to still be here.
Coping with a GIST Diagnosis
Honestly? I’m still figuring that part out. This diagnosis is so new, I’m focused on the things I can control: appreciating today and the moments that make it special. We’re not promised tomorrow, so why not find joy in the here and now?
His Advice for Fellow GISTers
When I first got diagnosed, I threw myself a pretty impressive pity party. Looking back, I realize how much time I spent letting small, inconsequential things ruin my day before my diagnosis. Also, trust your instincts. If something feels off, don’t let anyone convince you otherwise. Your gut feeling is right more often than not—probably about 90% of the time. And hey, in baseball, that’s an incredible batting average! Trust yourself; you know your body better than anyone else.
Now, life feels lighter—even when it’s heavier. I’ve learned to appreciate each day’s gifts, even in the face of uncertainty. It’s okay to feel nervous about tomorrow but don’t let it rob you of the happiness you can have today. And if life throws you a curveball like GIST? Find the reason behind it. Everything happens for a reason; sometimes, you must look for it.
Alex & Trooper
Hobbies He Enjoys
When I’m not evicting tumors or philosophizing about life, I love spending time with my family, enjoying the outdoors, reminiscing about my time in the entertainment industry, and discovering new ways to live my best life—one day at a time. My biggest passion in life is the pet supplement business my wife and I started, Genie’s Therapeutics. Improving the quality of life for dogs and their families has become a joy.
Motto for Life
Do Your Best and Forget the Rest.
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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