As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Caregiver of the Month for August is Beth Kroll. Here is her story:
Betena Carlton and her daughter, Beth Kroll, Florida, USA
My Mom has PDGFRA. She was diagnosed with GIST in September of 2020, but it wasn’t until recently that she got her mutation identified, thanks to the help of the Life Raft Group. In fact, I cannot stress how important our interaction with the LRG saved my mother’s life. Ultimately it was the Life Raft Group that provided the guidance, motivation, resources, and support to push for additional opinions and ultimately advanced tests and treatment. Had that not happened my mom would not be here today. The Life Raft Group has so many wonderful resources but it was more than that…they had the drive to say “don’t stop…there are answers”. And, there were.
Coping With a Loved One’s GIST Diagnosis
When my Mom was diagnosed, I went into hyper-problem-solving mode and wanted to learn as much as I could about GIST. I went to all of her doctor appointments and took diligent notes. I provided updates to LRG and they gave me the direction I needed to push the healthcare system. I tried to attend as many of the virtual Caregiver Support Sessions too and I’m so glad that Marlene (Nei) hosts them! She is also a blessing to me. I’m so thankful for all the support I’ve been given from the Life Raft Group coupled with lots of prayers!
Advice for Fellow GIST Caregivers
Become as involved as possible with The Life Raft Group, learn from their webinars and other resources. Don’t let your loved-one become a statistic to the healthcare system. Push on. Go down every possible avenue. Leave no stone unturned and do not take “No” for an answer.
Hobbies We Enjoy
We have enjoyed watching movies together, shopping, and having lively but loving discussions about her taking her medicine
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.
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 Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org