It’s been a really long couple of days, when they say “the kids have some pain during engraftment” they are not kidding. We had weaned her Fentanyl down to 0.2, but after yesterday we went back up to .3 again to try and get ahead of it.
Zoe is in great spirits between her bouts of discomfort, and she’s been healing. She had little scratches from where we couldn’t cut her nails and she would swipe her nose at night, some breakdown on her little bum, and of course the mucositis in her mouth and GI tract, and all of that is clearing up rapidly now that she has white cells.
And so, we are now officially engrafted, which means Zoe has had an ANC of >500 for 3 days. I like to think she hit that target out of the park, she went from 496 on Sunday straight to 1096 on Monday, 1290 on Tuesday and now 1766 today. Her WBC count was 2.6 today, up from 1.5. Good work Zoe!
We’re glad all of her discomfort and pain has paid off. It’s been a little anti-climactic honestly, I was expecting it to be more drawn out — though I’m grateful we made it quickly.
Amazingly, we now have to start planning for discharge. We have classes to attend to learn how to be nurses at home, we need to finish weaning Zoe from her pain medications (when the pain actually subsides), and reach a comfort level with the idea of being out of hospital again.
We’ll be required to stay local to Duke for another 80 days or so, to be sure that Zoe is fully recovered before we can return home. This next phase is one of the most tenuous, we have to make sure Zoe remains clear of any infections and that she doesn’t lose her graft.
HLH Journal 
Go Zoe! She is obviously an exceptionally determined little lady!
Congratulations! great news, you are all an inspiration to our family !!
We are faithfully following Zoe’s progress each day and remembering her and her family every night in our prayers. We are encouraged and excited about her progress. We are sorry that she had to endure some pain along the way but hope that is over now. GO ZOE, GROW THOSE CELLS!!
Love to all of you. Nannie and John
Wonderful news!!!
I’ve spent the last 2 days reading about your Journey. My daughter is experiencing the same thing Zoe did. Phoenix was born Jan 31st and diagnosed with HLH on April 10th. She is being prepared for discharge tomorrow as the HLH has gone into remission. BMT will happen in 4-6 weeks so as you know we will be on maintenance chemo until we return. I cried with Joy reading your posts. I could have written each of them myself as they are exactly how I am feeling. I especially related to your journal about being an optimist and always finding the silver lining. No matter how difficult days are we always find something to be positive about. I read each entry in anticipation of this one! Thank you for sharing and giving a mom hope. Thank you so much for sharing.
Thank you so much for reading! I wish you and your family all the best in the coming days. 🙂