Mayo Clinic, Indiana University, and Cleveland Clinic were all interested in evaluating Cody for their transplant lists. Mayo was the first place we sought out. Late April, Co and I spent a week in Rochester, Minnesota going through the redundant motions of doctor’s visits and waiting room boredom. After just receiving the news from Houston Methodist that he was successfully listed, we were fairly confident that Mayo would place Cody on their list, however, we were not at all prepared for what they had to say.
Our last appointment of the week was with the hepatologist (liver specialist). This man has a list of credentials a mile long and bluntly told us that we had seen a lot of doctors and inquired as to why we saved the best for last. It was physically painful to suppress the eye roll that was trying to escape from my face. I couldn't help but think, "Look here, buddy, we’ve been told time and time again that we have already seen the best, but at this point, my husband still has an egg-sized tumor wreaking havoc". Regardless, we heard him out.
This man claimed that based on the scans we provided from MDA and Houston Methodist, he is not convinced that Cody has PSC. If you recall, the whole reason we were turned down for a liver resection and turned to the next option of a liver transplant was BECAUSE of the PSC. He wanted to repeat some scans and have Cody undergo another endoscopic procedure to finalize his decisions. We had roughly 5 hours before we had to catch our flights home, but we were able to complete the list of tests and the doctor said he would review everything with his team and give us a call in a week. We returned home not giving much thought to it. We've already been told, twice, that resection wasn't an option and we were going to keep moving forward with the transplant options.
The following week we received three very interesting phone calls. Ohio and Indiana called and they both wanted to see Cody, however, they were not interested in putting him on their transplant lists, rather look into resecting the tumor. I'm sorry, WHAT? What the heck do the doctors think they are seeing/not seeing that our physicians in Houston told us was impossible? We were very skeptical at first but after speaking with the head specialists/surgeons at these liver centers, it made sense. They said that if Cody does have PSC, it is so minimal it is barely detectable and that he has more than enough viable, functioning liver to sustain life after liver resection. A couple days later Mayo called. They officially turned us down for their transplant list, however, they wanted us to come back in July to cut the tumor out. That's three separate liver specialists all saying the same thing. We talked and prayed and thought about our options and we decided that the best option was to proceed with removing the tumor instead of a transplant.
We've been sitting on this information for a few months, timid to really announce it. We've been let down before, so we really didn't believe it until about 45 minutes ago. We flew to Rochester and this morning Co had a final CT scan and appointment with the surgeon. We have been so, incredibly anxious about this appointment and the potential "sorry, we made a mistake, y'all can go home now" answer we were certain to hear. However, this appointment only brought good news!
Tomorrow morning around 0800, Co will roll back to the operating room TO HAVE HIS TUMOR REMOVED!! I will keep everyone updated throughout the day tomorrow and as this week progresses. We are expecting to stay in Rochester for 2-3 weeks to allow Co enough time to recover enough for the trip back home.
We cannot thank everyone enough for all of the love and support you've showered us with over the last 10 months. We are truly blessed and we cannot wait to get the Coco Puff back to full health!