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Aug 30, 2018 Latest post:
17 hours ago
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. I am not a prolific writer but i will use this page to update you all and give myself an outlet. Thank you all for your words of encouragement and your constant prayer on this journey. THIS IS OUR ADVENTURE
Stan's journey began many years ago when he was diagnosed with Hepatitis C. Stan has been a trouper and endured every new protocol including the new Harvoni. All to no avail. His liver did not receive any of these treatments. He continued to work and never seemed sick". As a result of the Hep C his liver became cirrhotic despite no use of drugs or alcohol. Despite the continued deterioration of his liver, he was not "Sick" enough for transplant. Last year his Nurse Practitioner Regina called to say he had a spot on his liver and ordered another scan. It was confirmed..... CANCER. she wanted hi to see a specialist in L.A. The specialist gave us options, chemo, ablation and/or transplant. The cancer qualified him for the transplant. The chemo and/or ablation would be done while waiting for the transplant. Kaiser does not have its own transplant service and they contract out to several Centers of excellence. Our choices in California were among Scripps LaJolla, and UCLA. Pretty good choices for sure, He also gave us the option to relocate (temporarily) out of state as the odds of a transplant sooner were much better simply due to the fact that there are SOOO many people in California. One of our choices was the Mayo Clinic in Jacksonville ,Florida. Not a bad option at all. But how could we possibly afford to do this? By this time I had quit my job with the intention of going back to work after the summer. We were ready to drive our little motorhome to Florida and live in a trailer park. It seemed an easy choice for us, you cant go wrong with the Mayo Clinic. It turns out Kaiser would fly us both there and pay for our lodging. Now the choice was even easier. We were going to Florida. Stan endured 2 Chemoembolization treatments which did not shrink the tumor. But it wasn't growing either. One of the criteria is the tumor had to be under a certain size. In January we went to the Mayo Clinic to be assessed by their transplant team. What started as a 10 day trip lasted a month. Mayo decided they wanted a biopsy.(not stans first) After the biopsy we met with a Doc for a preliminary report. Much to our dismay, he said it was NOT hepatic cellular carcinoma. Yes, we were praying for the RIGHT cancer. We asked what the chances of the final report being different and he was not optimistic. We were crushed. Back to California to figure out what to do thinking Stan was going to die from liver cancer. A couple weeks later we met with the liver specialist again and he informed us the final report was in and it was INDEED Hepatic Cellular Carcinoma !!! we both felt this was our miracle. We were so grateful for all the prayer we received from all of our friends and family In Florida they will transplant with a MELD score of 28. In California it is often 32 or more. Because Stans liver is still functioning he has a low MELD score. However, with the cancer he will be awarded exception points. We have to wait 6 MONTHS for those points to be awarded. So August 13th is our date the points will be awarded. then we wait again for a call to relocate. Stan underwent yet another Chemo treatment with still no success and the next step was ablation. Of course all these things come with there own possible complications, but he powered through. The ablation was successful the tumor was burned away. Now we wait and hope no new tumors develop. Now we wait for the call. More scans, and more lab work all to assure Mayo nothing new has developed, all which created more anxiety for him.He did really well, he became very fatigued and probably a little depressed. We have spent as much time with our kids and grand kids as we can. Today we received the call, his exception points have been awarded and we need to pick a date to go. This doesn't mean we have a liver. It means we go to Mayo, be assessed again, get listed again with the new MELD score and WAIT again. We dont know how long we will be there, how long it will take for a match but we are prepared.