Feb 19, 2016 (Sara)

Today we had a meeting with the nurse case manager. Maya was quite upset at the time of the meeting so Scott actually stayed with her while my Mom and I went to get some education for when we go home. My mind was blown. I think I had talked myself into feeling confident and prepared to hear the plan. I thought wrong. The meeting was at least 2.5 hours and when it ended I wished it hadn’t. I wish the nurse was still talking to me. I wish she could come home with us to make sure we can do this. I wish I knew I would feel confident that we can do this. I wish I heard the words “if this happens” not “when this happens”. I wish I could scoop Maya up, take her home, and have everything back to normal. I wish Maya went to ballet class tonight. I wish I didn’t see sadness on Maya’s face when she sees a video of Lincoln. I wish I wasn’t so afraid of the next year and a half. I’m very sleepy tonight. Day 4 tomorrow – yet another big day. Fingers crossed she won’t have any allergic reaction to the chemo they infuse tomorrow. Its called Peg asparaginase and apparently it commonly causes a reaction. She’ll be under close observation with everything available to treat an allergic reaction. Everything from benadryl to an epi pen. Some days I wish I could just curl up in her bed with her and sleep the day away. Her hemaglobin is down to 7 today so it was another very sleepy day. They will likely transfuse blood tomorrow sometime. Her platelets are now at 61. Her WBC dropped to 1.7…as scary as it is…it means the treatment is working. Big day tomorrow…I’m signing off. Love is life.