Where did the toy go?

Enjoying eggs

Reading books Aunt Karen brought.

Sally’s new game is handing us stuff…with both arms.

Hi all – Sally and I had an up and down night. Although she spent most of the night in the crib, she didn’t sleep very soundly after the reaction I wrote about, almost as if she had a cup of coffee at midnight despite her exhaustion. I was also afraid of her having a reaction while I was asleep and not knowing it. So I didn’t sleep much last night as I kept checking to make sure she was OK, finally bringing her into my bed around 4:30am after which I mostly just laid there and watched her sleep her most peaceful stretch of the night. I also learned that Sally’s neutrophils dropped below .5 so she is officially neutropenic and her blood counts should bottom out this weekend as our Leukemia doctors predicted.

She awoke in a grumpy mood and wouldn’t eat, until we gave her some painkillers. After that she chowed down on some eggs and cereal, but then fell into another funk after I changed her and saw that her tushy had open sores from going to the bathroom so much. I painfully cleaned her up and aired her out for awhile, and after a grumpy hour or so fell asleep on me in the bed for about 2 hours. When she awoke, she wasn’t hungry but was in a playful mood. Our friend ‘Aunt’ Karen showed up for a visit and got a solid 2+ hours of Happy Sally where she played and read with her. Karen is also one of the planners of the fundraiser so I got to hear about a lot of generosity people have been showing towards Sally that I wasn’t aware of.

All that playing tired her out and she passed out for awhile refusing to eat and growing agitated. This whole time I skipped the painkillers to see if she needed them, which her mood and refusal to eat showed me that yes, she needs them. I also received a brief visit from my friend Ashley from work who came by to donate platelets, Sally will likely need another transfusion of those in the next 48 hours. We finally got to hang out with Scarlett’s parents after she was admitted with an expected fever the night before. Whenever I see them instead of saying how good it is to see them, I tell them how much it sucks to see them (with a smile of course) as when I do its always because our kids are both admitted. Sally must have a crush on Scarlett’s dad though, she smiled at him every time she saw him despite being in a sour mood. Finally I saw one of Sally’s Leukemia doctors who told me the reactions probably weren’t morphine related (as Nicole and I thought) and they’d closely observe her to see what IS causing them. Again, our Leukemia doctors are the ONLY ones that really have the info to tell us what’s going on with Sally.

Following all these visits she got another round of painkillers, which resulted in more of Happy Sally until Nicole arrived to relieve me. Right before Mommy arrived, Sally received a quick injection of chemo that only took 5 minutes. I’m told Sally leaped with joy when she walked in, although I didn’t witness it so can’t confirm it matched my awesome enthusiastic greeting the night prior.

Here’s to hoping Sally and Nicole have a much needed restful night of sleep. Please keep Sally in your thoughts and prayers.

Matt