Well, our last update on here was last July. We apologize for the long delay. Somehow, time has managed to fly and stand still at the same time. We are very grateful for the continued prayers and support. Although a lot has happened since our last update we will make this as brief as we can. 

     After the last update, Brian’s PCP and Oncologist referred him to Dr. Eapen, an Endocrinologist. Dr. Eapen started an insulin regimen at that time and has made several adjustments since based on how the chemo and other things were affecting his A1C and glucose levels. And thankfully, she seems to have gotten it down to where it’s fairly easy to manage. 

     Over the next 7 weeks, Brian competed his second round of chemotherapy (FOLFOX with Oxaliplatin) - 4 cycles. Over that time, the neuropathy in his hands and feet had become worse. And, unfortunately, it has not gone away since. They had been treating it and have avoided the drugs that caused it. Recently, it has subsided maybe 25%. We pray that trend will continue. 

     In September, Dr. Meer ordered an endoscopy and scans. Those results showed positive movement with the cancer, so Dr. Meer decided to give Brian a break from treatment. In the middle of October the stomach and other pain levels started to reach pre chemo levels. Dr. Meer ordered a laparoscopic surgery, to get a full picture of the inside of the stomach, as well as retrieve biopsies in an effort to get Brian approved for immunotherapy. Thankfully, the biopsies that were tested showed sufficient levels of PDL1 for Brian to become eligible for immunotherapy. The pictures however, showed the cancer was worse and still spreading. Based on that information Dr. Meer started Brian on a new round of chemo, known as FOLFIRI with Ramucirab, in December. During cycles 2-4 Brian started having post treatment issues with his body temperature dropping below 94 degrees (with a few other symptoms). Dr. Meer held back the Ramucirab for cycles 5 and 6 and that positively addressed that issue. 

     After that round was completed, Dr. Meer ordered a PET scan. The results of the PET scan showed progress, but Dr. Meer felt it necessary to start another round of the FOLFIRI treatments. He added the Ramucirab back in, but at a significantly lower level. That worked for the first couple of cycles, but then Brian’s feet and lower legs started to swell. Dr. Meer referred Brian to his cardiologist who ran a series of tests. Those tests showed that Brian’s heart was doing ok so they started him on Lasix for fluid retention. 

     During this entire time, Brian developed sinus tract infections in his groin and buttocks area they’ve been treating on and off with different antibiotics. Dr. Meer and his PCP came to the conclusion that these would need to be removed surgically. We scheduled the surgery with hopes that this would fix this extremely painful situation. The evening before Brian’s last cycle he developed severe pain in his left left going from mid thigh to his toes. When Brian went in the next morning for treatment, Dr. Meer felt it necessary to order a Doppler ultrasound on his left leg to rule out blood clots. At the end of a very long day of chemo and waiting to get the ultrasound done,  the results were that he did have a blood clot from the middle of his thigh to the middle of his calf. He was immediately put on blood thinner injections to be administered at home. Due to this blood clot being present, Brian could not have surgery to help with these sores. It would pose too big of a risk. So, Brian is seeing  an infectious disease Dr. soon to get a culture from these and be put on long term antibiotics until he can get a more permanent solution and have the surgery. 

     In January while reading one of the support groups I am in on Facebook I came across a comment from this very sweet lady receiving treatment at the National Cancer Institute at NIH in Maryland. I reached out to her for more information and she so graciously responded right away. She was able to help me navigate my way to get in touch with the Chief Surgeon at NCI/NIH, Dr. Davis, who deals specifically with Linitis Plastica and the CDH1 gene mutation. I emailed Dr. Davis and got a response 2 days later. His research nurse called us and spoke with us about the trials Dr. Davis is doing and told us what information we needed to get from our Doctor here. Based on all of the information regarding Brian’s case, they determined that Brian was eligible for the different trials and treatments available through Dr. Davis. Brian and I have been gathering various medical documents as well as medical procedures that needed to be done here prior to our visit to Maryland. Brian and I had a telehealth appointment with Dr. Davis and really felt good about the treatment he would receive when going there. The specific trial Brian would be enrolled in is to receive intraperitoneal, IV and pill form chemotherapy every three weeks. Intraperitoneal chemotherapy is delivered through an additional port directly into the abdomen. This port would be put in on our first visit to NCI/NIH. Brian will be doing this trial with prayers that this will eventually lead to a total gastrectomy (removal of stomach). We have a telehealth appointment tomorrow morning (Thursday) with the Oncologist at NCI/NIH. Following that, we expect to hear from the patient coordinator to start making arrangements for our first trip. Which they are planning for later this month. 

     We will do our best to update this more frequently. While everyday can be a praise report, we would like to put this living miracle into perspective. In January Dr. Meer told us that they didn’t think Brian would make it through last summer due to this aggressive form of cancer. It seems as though our fight and our faith is having a positive impact on our doctors, nurses, etc. We believe and claim God’s promises, and continue to fight everyday with faith and hope in our Lord Jesus Christ. And, again, thank you so much for all of the prayers, love and support. 

     Hope everyone has a blessed Easter spent with family and loved ones. ❤️