April 27, 2006

Leah had quite a lot to say yesterday! In case you can't tell from her blog, she is feeling pretty good. Today when they got her count results her hemoglobin is around 11 (up from 6.9 on Monday), her white count is 12.2 (up from 4 yesterday). Her platelets have fallen again, so we may be looking into another transfusion of those. UGH! We are still in isolation because of the sores on her bottom. She has had no fevers for three days and would love to be out and running around, so I am going to talk to the doctors a bit about this. I know we don't want anyone else to get this, either, but considering they are in an area of her body that is always covered, maybe they will give us a break. We still have 9 more days of IV antibiotics to go, though. Right now we are waiting to hear if we have to go home with her port accessed and administer her medicine that way or if they can find an oral substitute. Leah woke up in the middle of the night crying last night and was upset about the idea of having to have her needle in at home. I know the doctors and nurses think it is no big deal and lots of kids do it, but home is one place she has been able to feel and be normal so far. I don't want to stay here for 9 more days, either, so I guess I will talk to Dr. DePaola about all of this and see what he has to say.

Last night I was able to escape our room for almost an hour and went and visited with another mother on the 3rd floor (the child bone marrow unit). It was nice to be out of the room and have some adult companionship, even though the nurses are great to visit with, too. Rebecca, the nurse assistant, stayed with Leah the whole time and read books and talked with her. She found the whole thing quite humorous since Leah talked her ear off. Few of the people here ever get to see that side of her. She rarely speaks if I am around unless it is someone she is really comfortable with-and that eliminates many of the doctors and nurses here. Well, last night she went on and on and used a whole bunch of big words-Rebecca said she is like a miniature adult. Between the eye rolling she uses, the "Well, Tina, like...." she begins her phrases with and the fact that she remembers everything including the exact inflections I have used when talking she is a little bit like me. She even has the internet shopping thing down and is busy reading books out loud now on the bed.

Leah's appetite has improved since a few days ago. I even had to share my cinnamon roll with her for breakfast (I went down to the Java Hut on first floor to get this), since according to Leah "I'm not into the menu food anymore!" I am just glad she wants to eat again.

11:30 UPDATE
Dr. DePaola just visited us. We are coming home! YAY! The bad news is that Leah has to be accessed while at home since she has two antibiotics she is using for her infection. But, why stay here for 7 more days while this is going on? Her infection does look better today so something is working. Her next chemotherapy round is scheduled for next Friday. Dr. Rahdi left for 10 day so I am not sure what they are thinking in terms of chemo., but Mary in the Middle is around, so I will visit with her, too. A home health nurse will have to come to administer her antibiotics, so right now that is being arranged and then depending on what time we get out of here, Leah may get her one antibiotic before we leave and we may even go to the mall. She is all over that idea.

Please, please pray for Leah's AFP to decrease and return to normal. This next round of chemo will be very, very important for her as we hope her AFP has not developed resistance to doxirubicin.