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I'm well! Thanks again everybody! 🙌

Hi and Merry Christmas from beautiful North Idaho!

I've been home for over two months now and it's been wonderful! I'm so thankful to be able to see friends and family, my dog, walk in the nearby field, have all the cooking utensils that I'm used to, etc. 

This is an update to let you know I'm doing very well and how thankful I am for all of you that interacted with me, sent me encouraging songs, cards, video messages, texts, called and prayed with me and for me.  My point is to encourage you as you pray for others for healing and going through medical procedures. I did remarkably well with no pain, very little nausea, no reduction in appetite or foods I didn't feel like eating, etc. I actually had an amazing summer! I quite enjoyed it overall. I got to spend quality time with my husband and my sister, enjoyed the nicest of Seattle summers (minus the brief smokeout), explored lakes, restaurants, autonomous zones, and met a lot of friendly doggies. I believe I was extremely impacted by your prayers, and want to thank you again and report this so that you can continue to have bold faith confidence as you pray for others.💛 

Medical talk: I'm still only at 25% donor chimerism in the T cells and still have practically no lymphocytes (0.25 K/uL should be between 1.0-4.8).  Seattle said this can take 2-4 years for the chimerism. My local doc says I'm still at risk for the acute kind of GVHD when the T cells (subset of lymphocytes) come in. All this to say, I still love to receive prayer, even if just right now as you're reading this, for a continued miraculous recovery. I've weaned off another of my immuno-suppressants (Cyclosporin) which leaves me just one more to go (Sirolimus) and I believe we are going to get right on that. Then, I'm at the 180 day (6 month) mark and don't have to take the antiviral, antibiotic and liver protectant, so I'll get to work on cleansing and building up good gut bacteria! 

One other thing that we did almost every single night (except maybe 2) was to receive Communion (at times over the phone together), and we still are. Through this, I believe we were both strengthened. I want to mention this because I believe it was a powerful grace to us. When we first arrived in Seattle, Rick was about 10 weeks out from a knee surgery. We walked (uphill both ways b/c it was over a bridge!) 7 blocks to the clinic and back every day (except 2 again) and he grew stronger and stronger. Even the day after my transplant I walked there and it was exciting to feel how much less winded I was at the top of the hill because there was quite a bit of hemoglobin in with the bone marrow. 😀 Back to receiving communion: we used devotional resources written by Joseph Prince, Ian Johnson and Mike Parson (Freedom Arc) all who have encouraging revelation about all that is provided in this great gift that Jesus gave us in his body and blood. Lately I'm listening to Chris Blackeby who also has amazing insight and encouragement on communion and much more. I wholeheartedly recommend all of it!  

One more fun thing: My hair, while it never all fell out, got quite thin, but now is growing in again! So, it's in this stage of having lots of crown and side volume since some of the new strands are about an inch long. So, with no styling products or teasing or backcombing, I get kind of a 60's lift to it. I wonder what it will look like when the new growth is 4 inches long?😅 Digging it for now. Lots of love and have the Merriest Christmases! 



 

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Day 71.  It's been over a month since I last posted an update here. The big update is that my team (made up of rotating transplant doctors, a PA, an NP and a nurse) reached out to the PNH specialist and pediatric teams and learned that for marrow failure disorders of blood, the T-cells are coming in at a totally normal rate. This contrasted with their experience with the huge majority of their patients who have lymphoma or leukemia. So, using the data from other PNH patients or non-malignant blood disease (usually diagnosed in childhood), I was perfectly on track the whole time, and they keep reiterating that I'm right on schedule, but the schedule for this can be from 1-4 years.🙏  My T-cell chimerism donor percent did increase from 17% donor to 25%. Thank you for your prayers! They also did a chimerism measurement of my Natural Killer Cells, also a kind of lymphocyte, and that came back at 100%. So it is that group of NK cells which is protecting my myeloid colony (still at ...

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