Clearly I haven’t updated this in a good long while. I apologize to those of you who have been following our story and then I just left you in the lurch. The transition home has been unexpectedly difficult for me. The timing of this whole thing has been oddly aligned with COVID, so we disappeared around the same time as everyone was locked away, and honestly, that was just really convenient for us in a lot of ways. We made it home around the same time that things were opening up here and it’s been difficult to find the balance between needing to say no to people who want to see us, figuring out working again, navigating all the doctor’s appointments and med regimes and just what life looks like now. It still feels like the new “normal” is in a lot of flux, and even my extremely flexible personality has me “feel[ing] thin, sort of stretched, like butter scraped over too much bread.” Grief is weird and it comes in waves. I also feel some guilt attached to my grief because ultimately, she’s home with us. There have still been a lot of changes in all our lives and being home has allowed for some contrast to come into focus that we escaped from while in our little bubble of the air bnb. Mostly, we are all doing well. We are all missing our people that we still mostly can’t see but the transition is going as smoothly as possible.

As far as Delia’s health, right before we left CA they took her off of a precautionary anti-fungal because it was causing her prograf (the main anti-rejection med she’s on) levels to be too high. Her levels should be between 8-10 at this stage of post transplant and they were around 12. Besides potentially causing her blood levels to go down when her prograf is that high, it causes uncomfortable headaches for Delia. Our first blood draw in OR, and the first one post anti-fungal, showed her prograf levels at 4. The last two weeks have been a balancing act between meds and dosages. Since her prograf levels went down, her liver functioning numbers went up (not a good thing) but not scarily high. Our last blood draw showed everything back to being a little more stable and her platelets had even gone up pretty significantly. We have another appointment with our GI dr. in Salem tomorrow.

We also met with the hemoc dr. at OHSU last week and she said exactly what I expected, “we don’t know what’s happening with her blood levels so we’ll just keep our eyes on it.” I am going with the no news is good news approach as well as the added benefit of her doing most of her monitoring without us actually having to travel the hour to OHSU. We are still praying pretty hard that the reason for her blood numbers going down are due to the meds she’s on and not aplastic anemia.

I’ll end on a good note! Our lovely and talented friend at Christy Campbell Photography took some lovely pictures of us after we get home. I had been enviously admiring her “Front Porch Sessions” while in CA and she blessed us with a session of our own when we got home.