January 5, 2006

I may be doing the fastest blog ever tonight. It is after 10 and for the third night in a row Chloe is not going to bed. She cries and cries when she is put in her bed, which I can only listen to for so long, and which also wakes Leah up. So, she is hanging out downstairs 'til way too late. She has always been a great sleeper, so part of me wonders if she is having some issues with lack of attention right now. At this point, if she wants to sleep in our bed, I won't complain. At least we will all be getting sleep. Some nights I play "musical beds" and start with Leah until she falls asleep, then to my own bed, then to whoever wakes up, then back to my bed, then to another child's....

Our day in Iowa City went well, aside from the AFP result. We did not get that number until Dr. Sarvada called us on our way home. Her AFP is now at 189,000. It did go down, so that is positive, but it did not go down by much. Chris and I have been on some different forums for hepatoblastoma parents -they are interesting to read, and apparently an AFP reading one week that does not decrease does not necessarily mean we should despair. Of course this will be a high priority to discuss next week.

Suzanne, Leah and I left at 5:30, which used to seem like a decent hour back when I had a normal life and was able to exercise each morning at that time. Now I can barely hold my eyelids open. We stopped at the North Liberty exit to put Emla on her port and then had breakfast at McDonalds. We were lucky enough to have Tom as our nurse again. Leah likes him-but not when he has to touch her. After accessing her port he was not able to get a blood return, so we had to wait for TPA to be administered and sit in her port for an hour. During this time we read books, played school (Leah did quite well, but Aunt Suzanne had a little trouble with my curriculum), and tried to amuse ourselves in any way we could. Once the hour was over the port worked quite well, Tom took blood samples, administered Vincristine (which happened so fast I missed it entirely), and we had another hour to waste until the lab results came back. We visited the 7th floor and saw Kristi, Leah's nurse. We also visited with Michael who is still in the hospital. He had surgery last Friday and will be there until the 11th. James was working, too, so we had fun picking on him for a bit.

Dr. Rahdi visited us while we were at the clinic, and I admit he is growing on me. He had promised Leah a Dora sticker one time when he saw her so I hit him up for it as soon as he walked in the door. He did not have one and did not know quite what to say. He has a 4 year old daughter-I asked if her name was Muhammadette after him--but she is named Danya, and is also a Dora freak. Next time we will have to bring him some Dora stickers to hand out since he is falling down on the job. Overall he and Dr. Sarvada were encouraged with how well Leah has tolerated chemotherapy. He tried to get Leah to give him five if they were friends, but she was having none of that. Maybe someday.

When we returned to the clinic I thought that Leah would need a transfusion because she was anemic. However, her hemoglobin is at 8.3 and they don't transfuse until it is below 8, so we were able to leave as soon as her port was deaccessed. It is quite likely Leah will need blood by Monday when I take her in. In fact, she may need to have labs done this weekend if I notice her becoming too lethargic.

Leah had requested a trip to Prairie Lights book store and raked in a few new books. She ate at McDonalds-2.5 chicken nuggets and 10 french fries. (Leah is down another 2.2. pounds. :( As Dr. Rahdi pointed out, at least she is not vomiting because that would mean she would need to have IV fluids for nutrition). Suzanne and I held out for HuHot, my new favorite restaurant that I highly recommend. Leah enjoyed watching them cook our food and even decided to eat a few more bites there. Suzanne and Leah picked out food to bring back for Chris so he could have a treat, too.

We were home in time to pick up Chloe from daycare and then visited the Janesville Library and Grandma and Grandpa Behnke for cookie baking.

This was not the short blog I intended. Chloe is happily playing with the Dora house Santa brought, but I am ready for bed. We are praying for MUCH lower AFP numbers next week, and hope that many of you continue to pray each day, too.