5/20/18 BMT Day +18 Liver damage NOT permanent

Reese’s counts are on the rise and so is she! We took another walk to the BMT isolation playroom and played a little Candyland and Hedbanz (I recommend this one, it’s very cute.) She only lasts a few minutes once we get there, the walk is tiring, but she always wants to go! Reese has her Bitty Baby, that she lovingly named “Toobie Baby”. Her baby has a double lumen central line that matches Reese’s and now she also has an NG tube in her nose for feedings. Some little girls feed their baby doll a bottle, Reese hooks hers up to the NG tubing with a pump when she gets hungry. Today, Reese told me her baby wants to drink through her mouth. I let Reese take the NG tube out of the baby’s nose and remove the stickers from her face. This is Reese’s way of telling me she is ready to eat and she does NOT want another tube.

She started by eating a whole bag of edamame for dinner tonight. (It’s still a winner in this girl’s heart!) They say chemotherapy changes taste buds, I can attest to this as her mom. Besides edamame, I have been having a hard time finding what Reese likes, the normal menu is not appealing to her. Next up- Fiery Cheetos. I know, you are thinking, WHAT?? It has been brought to my attention, by nurses at both hospitals, that children post chemo love these. Why? The taste can break through- they can actually taste it. Aw. I’ll let you know how that goes tomorrow…? What is on the horizon for this week? Her VOD should continue at it’s steady rate of healing. We learned that VOD is curable… that the damage to her liver is NOT permanent, thank goodness! Her counts are still high, but heading in the right direction every day toward normal. She has lost 3 lbs of fluids since Wednesday. We are keeping an eye our for early signs of GVHD and I can report that we have not seen this, hopefully we won’t, prayers for this, it’s a big deal. Lastly, it is with the greatest amount of gratitude and with a thankful heart that I make this next statement: Since Reese’s leuekmia diagnosis in December, through her continuous neutropenia for months that includes her two rounds of chemotherapy in Chicago, and now her bone marrow transplant, Reese has NOT caught a single bacterial, fungal, or viral infection. Not one. This blessing is a gift, a gift I don’t take for granted. I try everyday to be diligent to continue to keep her safe and I thank her doctors for the safe environment they also create. I bring this up because I am hopeful that she can continue this against-the-odds trend. It is unique. Please pray for her continued safety. I’ll end with a conversation from yesterday afternoon: Nurse- (sees a rainbow shining on the floor in Reese’s room) Oh look Reese! A rainbow! Wow, where do you think that came from?? (looking around the room for the source…) Reese- It’s from God.

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