The Road Set Before Me

Written by Dawn. Yesterday, we had a family meeting with my medical team about my upcoming stem cell transplant. Today I had my regular labs and an in-person appointment with Dr. A and the stem cell coordinator, Megan. It's been a busy week, and everything is coming together for the procedure! I'm excited, but I know I'll be pretty sick before I'm feeling better.  I was supposed to have my regular immunotherapy tomorrow but that was cancelled today! Although I was willing to still have the procedure, it doesn't seem to be helping, and honestly I'd rather have the time to rest up, preparing for the transplant. So hearing it was cancelled was a happy moment today! This means that I'll likely be able to attend church for two more Sundays until my official "hibernation" begins.  It's hard to summarize everything we've been told over the past couple of days, but a few things stand out. One question I asked today was, " What happens if the t...

Hi everyone, it's Dawn here.  Last week Dr. A had me redo my labs (with the big spike) to see what kind of results we'd get with only 2 weeks between tests. The full results were back by Monday.  There was another big spike.  Also on Monday (Oct 5th) we got a notification that Dr. A wanted a meeting with us. We figured there'd be a pivot and we were curious if I'd begin the Line 1 drug (as mentioned in our last post) or if he got compassionate permission for me to skip to the Line 2 drug. What happened surprised us too.  He told us that we would look into and likely go ahead with a Stem Cell Transplant (SCT)! His reasoning is that both my heart and kidneys are stable currently and, although the proteins are increasing, he doesn't see evidence that the Amyloidosis is causing issues yet. This is an optimal time to do an SCT!  It was quite a pivot and unexpected, and we've had to process it, but we are excited - and apprehensive too.  Shortly after talking wit...