Waiting for the move

 Hi everyone,

Its been a few weeks and you'd think that there would be a lot to report on but there's really not. We have been doing a lot of waiting these past few weeks--waiting for phone calls, waiting for timelines, waiting for logistics to be confirmed. 

In my last post, I shared with you that we had made the decision to move to Seattle for the stem cell transplant. That is still the plan, but planning for the move and transfer of care has not been as smooth as we'd hoped. As you can imagine, there are a lot of moving parts involved and lining up all the pieces has not been easy. Even as I write, there are still a lot of unknowns.

I am writing this once again from a hospital room, back this time for my 3rd round of Blincyto (immunotherapy drug). At this point, it is considered maintenance therapy, used to keep the leukemia in complete remission while we wait for transplant. I am very thankful that I have been feeling strong, and all my numbers have been looking pretty good these last couple of weeks. Its allowed me to attend Naomi's (and my) first silent disco, ride a bike, and spend time with family on the Oregon Coast. However, it hasn't been all fun as this 3rd round will result in a 7 day hospital stay instead of a 2 night stay due to unexpected side effects of the Blincyto. The Blincyto caused me to lose the ability to speak, unable to formulate words and sentences for a couple of days due to neurotoxicity along with some motor skills. 

We've gotten some information re: transplant timeline, though it may change still. Originally, the schedule was to start the screening process May 30th in Seattle with a tentative transplant date of June 30th. However, with the nature of my illness, waiting 2 months poses more risk than what I was comfortable with. So we were finally able to speak with the transplant doc in Seattle, and she informed us that they were able to find a date 2 weeks earlier, which pushed up the transplant to mid-June. While an earlier transplant is good, especially when it comes to my overall health and increased success with transplant, the setback with the unexpected Blincyto side effects now gives us even less time to prepare for transplant. That being said, this is what we're looking at for the next 6 months so you know where we're at. Of course, things may change.

May 15 - Move to Seattle (that's 8 days away!!)

May 16- Start Pre-screening process in Seattle (will determine if I qualify for transplant or not)

Week Prior to transplant - radiation and chemo (to obliterate my existing bone marrow)

June 15-ish - Stem cell transplant

June 15- September 25 - 100 day post transplant recovery (transplant success and health is at greatest risk)

End of September - Back home to Portland

So here we are waiting.  One of our biggest prayers is regarding leaving Naomi behind so she can finish out school.  Pray that with the little time I have left, I would make good use of this time, to spend precious time with Naomi and to help her prepare for the months ahead. Pray that she does well emotionally while left in the care of grandparents for a month before she joins us in Seattle.  Pray that I can build up my own health as much as possible, and protection from other illnesses/ viruses so that I can be strong going into the transplant.  I need prayer for logistics such as housing and childcare, and timelines to work out. To simply know without a doubt that God's presence and provisions are with me because so much seems to be overwhelming right now. And some decent sleep would be great too.  I've been sleep-deprived for days here in the hospital.  If all goes well, I'll be back in my own bed Monday night.  

Thank you for walking with us friends.