You aren’t who I expected to see

Our hearts sank when the blood work popped into MyChart on Wednesday while we waited to see the clinical trial doctor. 3.9 is what we saw. The highest his bilirubin has been since his liver surgery in the fall of 2023. We assumed the answer would be a hard no for the trial, and it was. The news hit like a knife, and then we were sent to the ER to investigate the cause of the high bilirubin. We were hoping for a clogged bile duct because they could do something about that, but that was not the cause for Zach.

GI came in and told us they didn’t see anything they could do for him, then we waited a day for interventional radiology to weigh in, and the fellow came in and explained what he saw. His explanation of what was happening to his liver was eye-opening. He said, unfortunately, the cause of the increase and decrease of the bilirubin is being caused by your liver tumors growing. As the tumors grow, they destroy your bile ducts, and when that happens, it releases bile, which is the spike in the bilirubin, and then it lowers as it gets filtered out of the body. He said that Zach’s oncologist has a plan for systemic therapy to hopefully get us back to clinical trials, and we should speak with her in the next few days to hear what that is.

The interventional radiology fellow told Zach, “ You are not who I expected to see when I walked into the room.” He was expecting to see a much sicker-looking man, and I think that makes it hard for people (friends and family) to understand how sick his body is on the inside.

Each day and each hour are so different from one another. His pain can be a 1 out of 10 one hour; the following, it’s a 7. We are still trying to get a handle on the pain, so please continue to pray for that.

Until next time,

Amber