My word choice to describe the day today. The kids spent the night at Honey and Grandpa's house last night so that Jaime and I could get an EARLY start for U of M. We were able to meet with Dr. Su, Gastroenterologist at U of M, to discuss Jaime's current health and prognosis. We walked away neither encouraged nor discouraged. Just kind of...hmmm.
Dr. Su agreed that we were definitely justified in coming to meet with her. Jaime's disease is progressing and on the MELD score (Model End-Stage Liver Disease) he's between a 9 and 10. She said that when you're at a score of 15, things are pretty bad and without a transplant at that point, survival is not likely. HOWEVER, it could take another few years before he reaches that score or things could go quickly - it really is a very unpredictable disease.
We walked away with a little bit more knowledge, whether we wanted it or not, regarding the Cholangiocarcinoma (Bile Duct Cancer). There really is not a good test to detect the cancer. The ERCP that Jaime had done a couple of weeks ago indicated no cancer, but as Dr. Su said, it's not always able to detect it. Dr. Su sent Jaime for some more blood work to check the liver enzymes again as well as some tumor markers.
Our current plan of action is this: If the liver enzymes have remained steady, although elevated, and tumor markers are clear, we will plan on going back to U of M in a year. We would continue to monitor his enzymes every few months with his gastroenterologist here in Grand Rapids. However, if the enzymes are elevated even more, Jaime will have to go back to U of M for an ERCP and further evaluation. We are praying that the enzymes level off and no ERCP will be needed.
We were thankful for the opportunity to meet with Dr. Su again. The first appointment with her last year left us feeling like we had wasted our time and theirs and left with more questions than answers. This time, however, the appointment was beneficial in laying out a "game plan" for this unpredictable disease.
We can't adequately express how grateful we are for the many family and friends that have been faithfully praying for us. Even in light of mixed reports we have such an overwhelming sense of peace. Regardless of the road we'll travel in the next few days, months, or years, we rest in knowing that God is able to sustain us each step of the way.
"For I know the plans I have for you..." - Jeremiah 29:11a
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2 comments:
I am glad that you have more information, but I wish you had more answers. I will continue to pray for Jamie (and you!) as you continue on this road.
We love you guys. Thanks for posting...The music is awesome, we're just going to leave that on today. :) God is so good and his peace is greater than we can fathom. Always here if you need anything. Mark/Sheryl, kids
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