Our theme for 2023 is Thriving Together and we are going to illustrate that concept throughout the year by sharing the celebrations, triumphs, and milestones that our community is experiencing while living with GIST. See more exciting highlights from #thrivingtogether.
Our Caregiver of the Month for January is Andrea Mantilla. Here is her story:
Hey there, I’m Andrea and my dad Nelson is a GIST patient. We are from Colombia and I am very happy to be able to share this story with everyone. It has been a road full of many emotions, with good and bad days, but always we are holding our heads high and never losing hope.
I arrived in the USA nine years ago to finish my studies and eventually bring my family so that they have a future by my side. My dad arrived one year ago from Colombia, and everything was a normal life. When I say a normal life, it is because after his diagnosis our lives literally changed quickly. It all started on November 16, 2022 while I was at work and my father was with my husband. My dad took an ibuprofen pill for muscle pain which was normal because his job requires physical work. That morning, he decided to take his pill and 30 minutes later he began to feel strong pain in his stomach accompanied by chills and his heart rate dropped alarmingly. Quickly, my husband called 911 and it was worse when we were told that the paramedics didn’t know what was happening so we decided it would be better to take him to the nearest hospital.
Once my father arrived at the emergency room, they stabilized him and did different tests, including an MRI. When the emergency doctor saw the results, she went to the room where my father was with my husband and she told them that my dad had stomach cancer and that he had other tumors, with a possibility of the cancer spreading. My husband quickly contacted me and gave me this news. I was so confused because my dad was always a very healthy person who never complained about anything. That day our life changed rapidly. My first reaction was to move quickly and seek help from professionals because I felt that this diagnosis was rare. I cried on my way to the hospital because I couldn’t believe my dad had cancer.
Arriving at the hospital I spoke with an incredible oncological surgeon who took the time to explain to me what was happening and little by little I was able to understand more and more. The days passed and I instinctively knew that I should seek treatment soon for him. The days went by and every week my dad had a procedure to know the exact measurements of this huge tumor. And these procedures were: endoscopy, followed by a needle biopsy, pathology and tissue examination and finally surgery where the tumors were removed. Thanks to this, my dad’s prognosis is really good. Those small tumors that seemed to spread were just fat cysts. My father had a gastrectomy on December 12, 2022 and they removed not the 30% of stomach that was initially thought, but a small part less than 15%. He is making an incredible recovery and has returned to work, and we are waiting for the mutation results to define the appropriate treatment
Thanks to everyone who has been with us on this difficult road including Carolyn (Dewalt) and Denisse (Evans) from The Life Raft Group and Dr. Blakely from National Institutes of Health (NIH).
Coping With a Loved One’s GIST Diagnosis
It is a difficult race where there are good days and others not so good. But ever since my dad was diagnosed, I keep in mind that nothing is impossible. I have looked for ways to investigate and become a GIST EXPERT. With the help of The Life Raft Group and their medical professionals I have been able to understand that GIST has treatment availability, and it is possible to continue with a normal life. I have learned with the help of everyone in the organization that we must not forget that we can be happy and smile. I speak for both my dad and me. In the end, there is always a light of hope, just let it shine and that same light will touch the lives of those you love the most..
Advice for Fellow GIST Caregivers
On this path full of so many emotions, my advice is to always look for professional doctors who will give you the knowledge and guide you step by step. Do not look for answers on the internet because many of these sites only confuse you since each case is different, just like we are different people. Choose a group where you can have support just like The Life Raft Group did with us. Smile and keep doing your best. You are bright, strong, and wonderful and live every moment to the fullest with your loved ones.
Hobbies We Enjoy
We like to go to different places, shopping malls and restaurants, enjoy piña coladas and dance salsa, and merengue. My dad and I share the same passion for sneakers. We are always looking for sneakers with different styles and colors that nobody else has. And on summer days we love to go swimming at the beach and spend time with the family.
Well, I don’t have just one… I have several because I think you should have several ways of seeing life:
“You can get everything in life you want if you will just help enough other people get what they want.”
“Coming together is a beginning. Keeping together is progress. Working together is success.”
“Just one small positive thought in the morning can change your whole day.”
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 Sahibjeet Parmar, Director of Data Mgmt. & Research, for more information: email@example.com