Since our last update Michael has been weaker and mostly sitting around the house. When he feels up to it, we’ll get lunch at a restaurant. He had a fever 13 days ago but we chose not to go to the ER to check for a urine infection because his urologist had already collected a Read more

Michael has had a good week with no fevers and getting strength back mentally and physically. He actually rode his bicycle to the dentist to have his teeth cleaned on Tuesday.  Well, part of the motivation has been the wonderful sunny weather we had in the 60s and 70s for almost 4 days. Perfect for Read more

From March 6-12 Michael gained a little strength every day. By Monday he drove by himself to get coffee and by Tuesday morning he even did some exercise with light weights for his upper body. I was happy on Tuesday morning. I thought my update was going to be: No news is good news. Michael Read more

The hardest part of this adventure has been the ups and downs and variability in Michael’s health. I realized when we are not sick how much we rely on our bodies being there for us. We get up and walk somewhere and plan to do things and expect our bodies to perform. In his case Read more

We know it is not normal to share all these grueling and perhaps morbid details but we want to be open and share because the human tendency is to hide from suffering, hide from death, hide from pain, and hide from one another. Hence this honest telling to bring into the light how challenging it Read more

Hello all! I have to admit it has been a crazy couple of weeks! Here is a way through, my motto perhaps: Prayer is paramount and Prayer prevails…it just does. So, on top of all the nasty bilirubin symptoms Michael was having he developed a fever last Friday and it was still present Saturday morning. Read more

Hi all! I have to make a correction to the last update. I said the bilirubin was normal and it was normal but back at the beginning of January. What had been happening since then, and why we rushed to get a biliary exchange, was that one of the drains was a bit blocked. So, Read more