We spent a total of one week in the hospital. It was really hard on both of us. The doctors could not seem to get her blood sugar where they wanted it. I felt so helpless because I really could do so little. I just tried to hold & comfort her. She wanted me with her every second because she was so upset & scared. Consequently I lost a few pounds from eating only one meal a day. I wasn't able to read, use the laptop etc. or she would just cry & hold her arms out to me. It was very pathetic.
Chemotherapy, or as we call it "elixir from heaven", is hard on her body, but the problems she is having are side effects to steroids. The steroids help with the chemo but cause horrible side effects for some kids. Abigail is one of them. She now has high blood pressure, diabetes, and is constantly starving. The starving part is tricky because we have to be careful what & how much she eats for the blood sugar and balance that with the insulin. Add the fact that her tastes have changed dramatically because of the chemo, and that she developed thrush and severe mouth sores. She would scream for food and then scream when we put it in her mouth because she hurt so badly. It was awful. One morning I had had it. I was up much of the night with her and could no longer take seeing her in so much pain. I finally said a prayer and asked Heavenly Father to please let the pain stop. With the next bit of oatmeal the crying stopped. I don't know if the pain stopped but she was calm and ate everything in her bowl. I was so filled with gratitude for that little recognition of her needs and mine. She was still in pain when it came time for her next meal but I was OK because she had experienced some relief earlier. Our little "tender mercies" are so much more frequent now that we are making an effort to recognize them.
We did end up having family pictures at the hospital. They have a little outdoor area on one of the upper floors that we used. Unfortunately, Abigail's ANC was 0 which meant that she had no immune system at all. We finally took pictures of our family and just left a hole for her on Josh's lap. Then we brought her down and took pictures of just she & Josh to photo shop in. Her siblings stood behind the photographer waving and singing. She had missed them so much that she just perked right up and grinned. She was our easiest child to photograph.
Abigail still won't walk and usually wants someone to feed her and even hold her cup while she drinks. She prefers to be lying down. She is sore and achy. She watches Natasha play and I wonder what she is thinking. I wish I knew how much she really understood about what was happening. Does she remember running and playing and how much fun she had? Will she be able to just jump right in where she left off when she starts feeling better or will we have to teach her again? I wish I had a way of knowing what was coming. It would sure be easier to go through if I knew everything would be great at the end. I had my first bout of severe self doubt during this hospital stay. I wondered if I should have just let her go. I know it sounds awful but when you see your baby in pain and struggling it is hard not to question your own motives. Is this what she would really want if she could tell me? It feels like such a huge responsibility to make decisions for someone else. I decided that this one was easy if I just thought of one person--Natasha. She lights up around Abigail. She talks to her and brings her toys from time to time. They came as a pair and I could not imagine them not always being together. It's like yin without yang.