October 20, 2023 Update

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Hello all:  On October 16, 2023 Michael got a biopsy through an endoscopic ultrasound. No tumor was found. Lymph glands were swollen and were biopsied. There was no cancer there. We were happy with this, but only to find out that these blockages to the biliary tree (Cholangiocarcinoma) are very hard to find a biopsy. They can send out tendrils and are hard to find. So we decided to keep his drains in and they were exchanged on November 11, 2023. At that time the interventional radiologist was able to biopsy an area that came back positive for adenocarcinoma. It was too small of a sample to do testing on. 

At this point his GI doctor and the liver specialist coordinator at Kaiser gave us a choice of going to a Kaiser oncologist or being referred to OHSU (Oregon Health and Science University hospital in Portland for a possible clinical trial involving chemo and possible transplant. We chose door #2, as Paul McClelland (nephew) highly recommended that hospital. Wonderfully, Paul has been a great source of information and education on the matters we are dealing with as he is a surgical intern training specifically in the hepato-pancreatic- biliary field!  We have not heard back from them yet. Probably we will know more by the first of the new year.

Meanwhile we reached out to cholangiocarcinoma.org which has been very helpful with information and support. 

At this point, nothing is for certain and we don’t know which way things will go. Living with biliary drains has not been easy. Michael has struggled with infection upon infection. Thanks to the foundation we are learning better ways to care for the drains.  But prayers and good thoughts have kept us afloat. 

We are so thankful for the journeys we are afforded in this life, even though they are difficult. I myself am working on being present and believing to let go of worry for a future that may not likely exist. 

More later…

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