7/11/18 Day +70 Plan for December but Pray for September

Plan for December but pray for September.

This past week, Reese began pulling out of the gvhd haze, so like any mom I started thinking about: what’s next? Well, “home” for Reese has two parts… being discharged “home” to the UCSF Family House and then being sent home, to Winnetka. I spoke with our social worker (and also our future outpatient nurse) about how that looks now that we have had this extra battle to fight. Remember, we were set to be discharged on June 8 when gvhd attacked, which would have put us pretty much on schedule. In that reality, we looked at going home to Winnetka around Day 100 (August 8.) Well, gvhd has rocked our world, and also the reality for our future. Recovering from gvhd is a very slow painful process. Reese is doing very well, I’ll detail some of that below, but we now know that we won’t be seeing Winnetka this summer like we hoped. My daydream of my kids running through my lush yard, flowers blooming, steak on the BBQ, fireflies & bonfire & s’mores roasting.. is slipping away, but not yet lost. We just may need to be simultaneously raking leaves (and purchasing a couple outdoor space heaters…) but it can be done! Plan for December but pray for September.

How is Reese’s gvhd? Last week she handled her wean of steroids from 2 to 1.5 dose very well. Today they further decreased the dose to 1.25. We want her at a safer level of 1!! When we achieve that, they will slow the decrease a bit. Weaning off steroids for gvhd can be very difficult… so we are incredibly thankful it is going well so far. Her volume has dropped from near 2 liters to less than 500ml. This is amazing and a huge quality of life improvement! Also, her feeds have gone up from 2ml an hour to 4, to 6, to 8!! At 10 they can start to decrease her TPN and lipids which is a very good thing. Her pain meds are back up to a higher dose because she still has a lot of pain. She is very tired, but motivated to eat and play for quick spurts. Her “5 minutes of joy”.

Speaking of 5 minutes of joy, I tear up writing about the joy that so many of you bring to Reese. I’ll start with the packages. Reese’s world is very simple, the things she can handle are few, so she gets incredible happiness from something new. Packages of “NEW” continue to arrive and it is so so sweet. (Hilary and Leslie, yours are here and ready to be opened!) Next, the VISITORS. This past week Auntie Kari and cousin Olivia joined us, as well as Anna and Diane (“Julia’s mommy and auntie”.) There aren’t words to explain what your travel means to us, to Reese. It’s so giving, to make the trip and give her the authentic experience of love and the exciting departure from “the same”. The same… everything. It’s just… love. That’s what it is. Pure love. Love for Reese, for Quinn & Claire, for all of us. Thanks.

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