This week our doctor is mixing things up. This is one of the things we love about him. Well, what we love most about him is his personal career goal to improve the transplant odds for JMML. We are so blessed that such a brilliant transplant doctor has taken such an interest in the research and management of this rare disease. As you know, it doesn’t get a fraction of the funding or attention as more common leukemias. The work he does personally is incredible (and everyone knows how I feel about the JMML trifecta- Loh, Dvorak and Stieglitz. The passion of these doctors is the reason we left a great hospital and traveled across the country to cure our sweet little girl of JMML.)
I digress- I was going to tell you about changes being made in Reese’s care. Reese is now officially OFF tac. This means she has one LESS “toobie”. We were celebrating as that line was turned off and removed! Fish oil and a cholesterol med were added to help her TMA, lasix is running twice daily with albumin to get some fluid off her (we estimate a good 6-7 pounds in her tummy.) Reese also had a “calorie count” done yesterday and we learned that she is consuming 25% of her caloric needs!! This is done by mouth and through her NG tube. This is incredible and such a feat! TPN continues to play a necessary role as we get that oral intake number to rise over the coming weeks and months.
Reese and I posted on Facebook last week, asking for favorite book titles to purchase for her Book Store. This turned into an incredibly generous outpouring of offers to send Reese a favorite book. Well, I have to tell you, they arrived over the weekend, all 70 of them, and what a library she has!! As many of you know, I taught second graders in Winnetka for many years before having my kids. One of my favorite things to teach is literacy- and as our days here have turned into weeks turned into months- I saw a hole. I don’t have enough classic books. Meaty books, thought provoking books. Things that make you go “Hmmm”. (Sorry for the C+C 90s reference.) So I am opening a BOOK STORE each night before dinner, while all my kids and I are together, and we shop for our bedtime books. Reese stretches her legs in the hall and then we have a book experience. Tonight we shopped and I read with Quinn and Reese, cuddled in bed, just like at home. (Claire wasn’t here tonight, she picked a book earlier.) So thank you to everyone who sent books. We have enough now, we are at perfect capacity, and you have brought literacy, some normalcy, and lots of snuggles to my family.
Reese and Quinn are pictured shopping tonight. The first three titles are: If you Give a Pig a Pancake, Twin to Twin, and In My Heart. A few people included their name and some of you wrote a note (if you did I have taped it in the cover : ) Thank you. (On a funny note- my dad collected these boxes from the front desk of the Family House each day and then delivered them to me here at the hospital. The front desk staff found it very curious, asking if we are running a business?? And the mailman offered him his bag, haha. Pics of my dad in the “gallery”, for a laugh. How blessed are we???)
I saved the most important update for last- Reese’s 120 day chimerism came back 100% DONOR!! No sign of Reese’s cells anywhere… happy dance!!! And that’s what it’s all about.