Over the course of 2020, Joe went from being a perfectly healthy and active priest in his mid-30s, with no prior medical history, to experiencing severe bouts of abdominal pain in March and April, which eventually led to a diagnosis of ulcerative colitis in May, and the removal of a very inflamed gallbladder in June. While his pain subsided, and his colitis became manageable with medication, further inspection of Joe's bile ducts after surgery revealed some abnormalities. After several more scans and tests, and two additional surgical procedures, Joe was finally diagnosed in January 2021 with very early Stage I bile duct cancer (cholangiocarcinoma).
Joe's particular form of cancer is caused by a rare autoimmune disease of the liver, called primary sclerosing cholangitis (PSC), which sometimes occurs in people who have ulcerative colitis. No one knows what causes PSC, but it is thought to be genetic. Typically it is not detected until a person is in their late 40s or 50s, and while PSC can eventually lead to cancer, cirrhosis, and other liver and bile duct problems, it is extremely rare for cancer to develop this early, at the very onset of PSC, and it is even MORE rare for any bile duct cancer to be detected at such an early stage, with no visible tumor or mass, and prior to any spread. PSC also normally shows up first in the liver, after years of struggling with ulcerative colitis. As of right now, however, Joe's liver remains perfectly healthy. Joe's case is therefore exceedingly rare, on a number of levels.
All of these factors actually work in Joe's favor, since there is a path for treatment that could effectively “cure” Joe of the PSC altogether (which is not usually an option for people with this disease). Unfortunately, this will require him to undergo a full liver transplant in addition to chemo and radiation. Even though Joe's liver is healthy right now, there is no other way to prevent the PSC from progressing, and no way to ensure that the bile duct cancer does not return, without replacing the entire system.
An amazing interdisciplinary team of research doctors at Duke Hospital have taken on Joe's case, and we are fortunate that Duke just so happens to be one of the top 3 hospitals in the country for dealing with PSC-related treatments and transplants. While Joe's path to healing and recovery will be long, the doctors are very confident based on what they are seeing right now that he will come out the other side of all this. The treatment plan will occur several phases over the course of the next year:
Phase 1: Chemo/Radiation (March-April): Joe will undergo 5 1/2 weeks of chemotherapy and radiation, in order to eliminate the cancer cells in his bile duct and GI area.
Phase 2: Scans/Tests & More Chemo (April-June): After radiation is complete, Joe will have several tests and procedures to determine whether all of the cancer cells have been eliminated. Once that is confirmed, Joe will become eligible to get on the transplant list. They estimate his wait time will be approximately 4 months. During that time, he will remain on chemotherapy in order to make sure that the cancer does not return while he awaits his new liver. He will also be working hard during this time to regain his strength, so that his body will be prepared for the transplant surgery.
Phase 3: Liver Transplant (Fall/Winter 2021??): Joe will receive a full liver transplant, which will get rid of his PSC-infested liver and bile ducts, and replace them with a liver and bile ducts that are PSC and cancer free. The surgery itself will last 12 hours, and he will be in the hospital for 7-14 days. The call that they have an organ ready for him could come at any time, and we have to be on call at all times and prepared to drive to Duke at a moment's notice for the transplant surgery. We are told that there may even be several false alarms, where the organ ends up going to someone else. So the timing for this surgery will be very unpredictable.
Phase 4: Recovery Period (Winter/Spring 2022): immediately following the transplant surgery, we will need to temporarily relocate to Durham for 30-45 days while Joe undergoes a number of follow-up tests and procedures to make sure that his body is accepting the new organ. This will be followed by 2-5 additional months of 24/7 care and then recovery time, while Joe's immune system adjusts to the new liver, and his body slowly regains its strength. We will probably need a lot of assistance during these months!
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I apologize for the annoying and unethical way that CaringBridge tries to solicit money, but this was the best platform for communicating our updates to everyone.
Check out the "Ways to Help" if you are looking for other specific ways to support us. I will be providing updates through the "Journal" section about how Joe is doing and what sorts of help we need, since this will change at different times as we move through the different phases of treatment. You can sign up for days to pray for Joe on the "Planner" page, or leave a message for Joe in the "Well Wishes" section.
Thank you all so much for your love and support. It means the world to us!!