Day 16 - Cycle 1

Thursday, September 26th

Avery was extremely restless in her sleep last night. She tossed and turned and cried out a good bit of this night. There was no apparent reason for this, but it caused me to jump up from bed every time to ensure she hadn't pulled her NG tube out. Luckily, the tube survived the night.

She was able to tolerate her goal feed rate of 56mL per hour. She will continue on 24hr feeds until she starts eating well again. Her ANC had risen to 50 this morning which is a big praise as we have been at zero our entire stay. We need to see a continuous increase each day before we can go home. Her platelets were lower than yesterday but still above the threshold(50,000) needed for her protocol, so no transfusions were needed today. She was also removed from IV fluids.

She slept in a little this morning and seemed to feel better than the day before. She played and watched the iPad for most of the morning. We decided to schedule her an appointment to get her hair cut as it is now falling out a bunch and driving her crazy getting hair everywhere. They didn't have an opening today, but we should be able to go tomorrow. In preparation for her new look, she was presented with an American Girl Doll that will look like her. When she is done with treatments, she can send her American Girl in to get hair added that will look like hers. We once again feel so blessed to be cared for at a hospital that always tries to give the kids the best experiences possible even in the worst situations! We are also lucky that Avery has no lack of self esteem whatsoever. When I asked her if she was worried or sad about her hair falling out, she said "No... I'll still be really cute!"

She spent most of the afternoon napping on the couch and catching up on some much needed rest. She was excited when Daddy came by after work. The first thing she wanted to do with him was make slime. Shon and I ate dinner while Avery watched. She still doesn't have an appetite and has only eaten a couple of bites. At least we now know that she is getting the nutrients and fuel that she needs from her tube. She was also much more pleasant and helpful to the nurses today. This is also a huge praise, as it is no fun for them or us to have to hold her down against her will.

Please continue to pray for:

- Her ANC to continue to increase

- Increased appetite

- Continued tolerance of the NG tube and feeds

- Some quality days feeling good before we start her next cycle