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 & Caregiver of the Month for February are Carolyn & Mark. Here is their GISTory:
Mark & Carolyn, North Carolina, USA.
Carolyn’s GISTory
We met at a school in a rural town in South Carolina in the 1970’s. I was from Pennsylvania and she was from Virginia. I was in my second year of teaching, and she was the speech therapist for our elementary school. I was interested in meeting her and asked a friend to set us up. He never did though, and I finally got the nerve to ask her out. She accepted! We soon found out that we were destined to be together, and I asked her to marry me. She accepted and that is when the fun started, all the women in our small southern town were giving her extensive advice about the wedding we should have. We soon realized that a big wedding was not the best for us. Thus, we decided on a small wedding on an Easter Monday afternoon and have enjoyed life together since that time. What an adventure! We moved ourselves several times, bought a half-built house and finished it with our own hands, and started a family. Later, I went to graduate school at University of Virginia (UVA) and she worked at the UVA bookstore and on research projects. Near and during retirement we made several trips together to teach at an international school in Shanghai. We have also had the privilege to make trips to China, New Zealand, Australia, Thailand, Hong Kong, and Singapore. All these adventures and experiences have made our love stronger. Our 50-year anniversary will be here before we know it!
Mark Tells Their Love Story
We met at a school in a rural town in South Carolina in the 1970’s. I was from Pennsylvania and she was from Virginia. I was in my second year of teaching, and she was the speech therapist for our elementary school. I was interested in meeting her and asked a friend to set us up. He never did though, and I finally got the nerve to ask her out. She accepted! We soon found out that we were destined to be together, and I asked her to marry me. She accepted and that is when the fun started, all the women in our small southern town were giving her extensive advice about the wedding we should have. We soon realized that a big wedding was not the best for us. Thus, we decided on a small wedding on an Easter Monday afternoon and have enjoyed life together since that time. What an adventure! We moved ourselves several times, bought a half-built house and finished it with our own hands, and started a family. Later, I went to graduate school at University of Virginia (UVA) and she worked at the UVA bookstore and on research projects. Near and during retirement we made several trips together to teach at an international school in Shanghai. We have also had the privilege to make trips to China, New Zealand, Australia, Thailand, Hong Kong, and Singapore. All these adventures and experiences have made our love stronger. Our 50-year anniversary will be here before we know it!
Caregiver
One of the things I have always loved about Carolyn is her passion for helping others. Having GIST has not changed this, she now has an added mission: to help others with any kind of cancer. My role as her caregiver has been to support her GIST journey by understanding the varied protocols for diverse types of GIST. This has been much easier given the support and training provided by The Life Raft Group via online materials, live webinars, and conferences. Learning from experts such as Dr. Trent and Dr. Blakely gave me a deeper understanding of all things GIST, something all caregivers need. As a caregiver, most of my role is being a good listener. Other times it requires me to be assertive in getting the care she needs. It is a great joy to watch her mission to help others with cancer each day. Thank you, Life Raft Group staff, mentors and volunteers!
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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