Cross #: 12.3576
On August 13, 2018 a routine “honey-do checklist” health physical turned into 2 weeks of labs, scans, doctor’s appointments, a biopsy, and ultimately on August 30, a diagnosis of Stage IV Gastrointestinal Stromal Tumor “G.I.S.T.”. Although we’ve learned at this time there is no “cure” for Stage IV G.I.S.T., Matt’s oncologist has reassured us that there is still hope for a long healthy life ahead. Matt’s current sites and sizes of growth are inoperable, so the original plan was to begin taking “Gleevec” an oral chemotherapy agent. The goal with Gleevec was for a good response in shrinking current tumors, as well as preventing further metastasis, therefore controlling the disease while we pray for research efforts to bring forth a true cure.
After a week of taking Gleevec, Matt’s genetic marker results came in off of the tumors (from a biopsy) and showed that Matt has “Pediatric Wild Type GIST”. The “good” news was this type has most likely been within him for years and is therefore thought to be slower growing. The unfortunate news is research shows this type of GIST does not respond to (Imatinib) the oral chemo he was taking for the last week; so, he was taken off of it to prevent unnecessary side effects since it’s ineffective.
After additional testing, Matt has been diagnosed with SDHB-deficient Wild-Type GIST; (he keeps getting more unique). What this means is he is also at risk of paragangliomas and pheochromocytomas (nervous system tumors in the head and neck and abdomen respectively. The last ‘treatment’ option available was a phase 2 clinical trial at the National Institute of Health in Bethesda, Maryland. After multiple discussions with our doctors and the NIH team, we deemed this would not be worth partaking in due to its current lack of effectiveness.
Fortunately, his lab results and MIBG scan came back with no signs of paragangliomas present. With this great news, Matt will not have to begin treatment for paragangliomas prior to surgery, so we have a date. Matt is scheduled for a laparoscopic resection of his primary GIST tumor along the stomach on Thursday, November 29 (next week). The goal of this surgery is to remove the risk of this primary tumor from perforating the stomach or rupturing causing associated damage. Although this is not a cure, we are very thankful they are willing to perform this operation in the hopes of keeping his body as healthy as possible for when curative treatment does arise in the future. Following this operation, and recovery, we will then talk about options for his liver. Please pray for continued health heading into surgery, pray for peace and calm for us both with this next step in the plan, and please pray for his surgeon and medical team in all of the days leading up to surgery as well.