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 May is Joy Knopp. Here is her GISTory:
Joy’s GISTory
Joy Knopp and her daughter Leah, Washington, USA
In 2003, my daughter Leah (age 8 at the time) developed an upper gastrointestinal bleed and anemia. A CT scan showed a mass in her stomach area. She underwent a biopsy and subsequent stomach resection. At this time, she was diagnosed with pediatric wildtype GIST of the stomach. We were told that the GIST had a high mitotic rate; however, there were no mutational analyses available at that time (later pathology did not show an identifiable SDH gene mutation). She was started on Gleevec after this initial surgery, but she had significant side effects and it was stopped.
On a routine follow-up PET scan one year after she was diagnosed, she had a reoccurrence in another area of the stomach and a second resection was done. This was probably more devastating than the initial diagnosis. She had another stomach resection at this time, and within a year, had another recurrence. At this point, we were advised that she needed her whole stomach out. So, Leah underwent a total gastrectomy when she was 10. She developed a lung metastasis shortly thereafter and began Sutent via a clinical trial. She had an excellent response to Sutent and has continued the drug for 19 years with no signs of recurrence. She has been told there is little data to guide Sutent therapy, but given it provided such excellent control, her physicians have advised her to continue it.
Particularly in these past several years, she has developed quite significant skin rashes and other side effects limiting her quality of life. Therefore, after a discussion with her oncologist, it was recently decided that she could stop the medication if she agreed to frequent MRI scans. She just had her first MRIs since stopping the drug and they were normal!
Coping with a GIST Diagnosis
There was not much known about pediatric GIST when Leah was diagnosed. The Life Raft Group sponsored an event in NYC in 2005 where 10 kids with GIST gathered with their families. These connections were huge in that we gained knowledge, support, and relationships with the other participants. Leah’s two older sisters, and our extended families, were kept well informed and were immensely supportive.
Her Advice for Fellow GISTers
Find support for yourself. We get so involved in our loved one’s care and needs, I think we forget about our own needs.
Hobbies They Enjoy Together
Hanging out at coffee shops, walking, playing games. We recently traveled to Mexico together.
Motto for Life
Always find a reason to laugh.
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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