May 22, 2006

I am sure everyone has been waiting with baited breath to hear our AFP results. Chris had to remind me last night when we talked that I had yet to post them. Leah's AFP was drawn on Saturday morning (5/20). I told DeeAnn our nurse to say a prayer over that little vial of blood before she sent it to lab. These results never come back very quickly and they continue to be something I can barely handle knowing and not knowing. When Becky our nurse was pulling them up on the computer in our room I was looking over her shoulder, but told her I would probably pass out or have a huge meltdown if the AFP was higher. Right now Leah's AFP is 45. On May 5 it was 464, so it has made a 90% decrease in 15 days. I think everyone was very happy with that. I am and so is Chris. It is still not 0-9, but we are getting closer. If we follow the half life of 5-7 days that we have been, her AFP was 464 on May 5, should have been 232 on May 10, 116 on May 15, and 58 on May 20, so we are slightly ahead of the half-life. We still need prayers to have the chemo. continue to work--we need the AFP to keep dropping just as it has been right back into the normal range.

Leah is feeling good -and has - for the last few days. She has pseudamonis, which is what we anticipated after her infection last time. I am not sure when we will get released. There will be a discussion about it today, but I need to make sure the lesion in her crotch region is looking better, and right now it looks slightly better, but (not to gross you out) still has a circle of pus in it. This is still causing her discomfort at times, and I can certainly see why when I examine her.

Leah got blood on Saturday because her hemoglobin was down to 8.0-- they transfuse below 8. It is now 10.7, and she has been a wild child wanting to go for walks, trike rides, and ready to run around. She is riding her trike up and down the hall now yelling for James. She has decided to call him "Jimmy" much to his annoyance, which is of course why she does it. I don't really even need to watch her since I can hear her yelling for him in her little munchkin voice.

Yesterday my sister visited and took Leah for a walk, got us Chinese food, and brought us a few other supplies. Chris was also able to visit very briefly. James was very glad to see him because he had dropped his cell phone in our car when he went shopping with Chris and this way he could get it back--it is amazing how hard it is to live without technology.

We are still waiting for the doctors to round. At this rate we will be here til tomorrow for sure. Please keep up all of your prayers.....for a NORMAL AFP and for Leah's infection to go away quickly and an uneventful third round of chemotherapy to start so that any remaining cancer cells can be killed quickly.