She's back

She's laughing - really laughing, like belly laughing. She's playing. She's moving around. She sat at the table to eat a few meals. She turned off the Barney!! It feels like Hope is back, and it makes everything so much better.

Monday's immunoglobulin infusion was kind of a disaster. They premedicate with Benadryl and Tylenol because reaction is fairly common, and then they infuse it very slowly. After two quiet hours, including a nice nap, Hope woke up screaming and shaking. They immediately stopped the infusion and gave her hydrocortisone. Twenty minutes later she was fine, but it was scary, and the whole day was a waste. 

The rest of the week had ups and downs: Tuesday she had a great day of regular home stuff. A visit from our wonderful OT Pia, who Hope adores, and a first visit from a new speech therapist. (We miss you, Erin!!) Wednesday was a really long day at the hospital with yet another a trip to the OR (spinal tap with chemo and a bronchial scope to check out her airway because of some noisy breathing while she sleeps). Then back upstairs to clinic for more chemo; we had to wait for a long time because there were no rooms in clinic, and at one point they ran out of IV poles. It was a stark reminder that there are just too many kids with cancer... 

She is tolerating this second week of this round of chemo remarkably well. Her mood is good. Her energy level is much higher. But on the downside, her immunity is literally rock bottom. A normal ANC (absolute neutrophil count - the number that measures operational white blood cells) is between 1500 and 5000; below 500 is considered "neutropenic" requiring her to wear a mask, not go out in public much, etc. Wednesday her ANC was 90; today it was officially 0. Yikes.

We went back and successfully got immunoglobulin today, and she'll get more red blood cells and platelets on Monday. Lots of clinic time, but she is hanging in there.