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 April is Rachel Wilbron. Here is her GISTory:
Rachel’s GISTory
Rachel Wilborn – Tennessee, USA
I was diagnosed in August of 2023 when I was returning to Memphis, Tennessee from a trip to New York with my siblings. On the flight back I noticed I was having a lot of chills, and when I landed, I came down with a very bad fever and was rushed to the hospital. My fever was reading about 105 degrees Fahrenheit. The doctor ordered a CT scan to try to figure out what was causing my fever, and the scan revealed a mass on my stomach. The ER doctor told me to follow up with my primary doctor. At this time, I did not think that this was anything serious. I did an endoscopy, and the doctor came back and told me I had GIST. I was so confused; I did not know what that was and my doctor told me that it was not able to be surgically removed at this time because it was around 8 cm, and we would have to shrink it before it could be resected. I was still so confused and told my doctor that I have no idea what he’s talking about. He then told me that I had cancer. I was like what cancer? He shared that GIST is a rare type of cancer.
It took me a while to process because I was just so confused, how did I even end up here? I had so many questions that I’m still asking but my main question to my doctor was what we have to do moving forward. At that time, he told me not to worry, that I was going to be fine and that my medical team was going to cure me. Long story short, the doctor gave me a targeted drug called Gleevec 400mg and I was on it for about three months where I assumed that the medication was working and everything was fine.
I had a follow up scan in December 2023 where I found out that the tumor doubled in size. When I got this news, I remember I was looking at my doctor confused, and my doctor was looking at me confused and he was trying to figure out what happened and why the medication was not working. He told me to increase my Gleevec to 800mg and come back in a month. I remember telling myself that this doesn’t make sense; if the medication didn’t work initially, why would I double the dosage and wait? I was not comfortable with waiting, so I desperately started searching online for other options and that’s how I found out about The Life Raft Group (LRG).
I found the LRG on Facebook, and I commented on a post. I felt like my guardian angel reached out to me in my DM‘s (direct message) and she encouraged me to seek a second opinion. The LRG connected me with Dr. Andrew Bakely at the NIH. I emailed him with the subject matter “urgent help” because I was in desperate need. I did not know what to do, where to go, and who could help me. As soon as I reached out to him, he and his wonderful team welcomed me and took great care of me. Fast forward to January 2024, I had surgery, and my tumor was successfully removed. It had grown to 28 cm at the time of surgery! I’m so thankful for everyone and for the wonderful team at NIH. Everything worked out perfectly and I couldn’t have been more grateful.
Coping with a GIST Diagnosis
Despite having GIST, I am still able to be a great mom, a great wife and I work two jobs. I always tell myself that no matter what I’m going through, I know someone may have it harder than I do so I try not to complain and give myself grace and push through.
Her Advice for Fellow GISTers
To my fellow GISTers, I would like to tell you to advocate for yourself! Don’t take no as an answer when it comes to your health, and no matter how hard it is always try to remain positive.
Hobbies She Enjoys
I enjoy visiting my family in Trinidad, travelling, doing hair, and helping others whenever I can.
Motto for Life
It might be cliché, but I’m always singing, “Don’t worry about a thing because every little thing is gonna be alright,” by Bob Marley.
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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