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 September is Pat Rocco. Here is her story:
GISTory
At the age of seven, my daughter Bella was noticeably pale and experiencing extreme fatigue. Testing revealed anemia and she was put on iron therapy, but little did we know at the time, there was a lot more to it. After months of more testing, an endoscopy revealed a stomach mass confirmed to be a 7 cm GIST tumor. It was resected in February of 2009 and I began my research to learn as much about GIST as possible. Routine MRIs found additional masses in the years to come – in 2010 and again in 2016. Bella had surgeries to remove the tumors. Her GIST was classified as wildtype and in more recent years, specifically, SDH-deficient GIST.
Coping With a Loved One’s GIST Diagnosis
Coping with Bella’s diagnosis has changed throughout the years. At first it was hard to cope because of so much fear of the unknown. The time leading up to each MRI and then waiting for the results was incredibly stressful. As time went by though, I realized I needed to cope better. Through meditation, and feeling more confident in her treatment, by reaching out to experts, I now have reached a point where I tell myself that until a doctor tells me differently, Bella is healthy and I focus more on all the positive things in our lives.
Advice for Fellow GIST Caregivers
The biggest advice I would give other caregivers is to find doctors that have experience with GIST. That has been key, and The Life Raft Group was instrumental in having that information and so much more available to us on their website. I also found the National Institutes of Health (NIH) extremely helpful. We attended the NIH Pediatric & Wildtype GIST Clinic, not only learn more, but also to make sure doctors around the country had Bella on their radar. We have participated in many studies and donated tissue to the NIH, Memorial Sloan Kettering Cancer Hospital, and The Life Raft Group in the hopes of progressing research of GIST.
Hobbies We Enjoy
Bella and I share our love of travel, and love experiencing different cultures, languages and cuisine. Mother/daughter shopping is also high on the list and we enjoy going to the beach. Now that she is away at college, our time together is more limited, but she never lets a day go by without a call or a text.
Motto
“Once you become fearless, life becomes limitless” – Unknown
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 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 a GIST/PRiME account
- 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: skaur@liferaftgroup.org
