April 4, 2006

Today has been a rather frustrating and depressing day. Leah threw up again late last night and then again every time today when she ate anything. She seems to have developed some psychological phobia about eating and has convinced herself she will get sick. This is very frustrating because she was so good about taking medicine at home and is now crying about each and every drop she is supposed to take. Considering these medicines are rather important, we waste hours trying anything we can to get her to take them, and then she vomits immediately. The bad news of the morning is that she has an infection in her port. So, we are now on antibiotics for 10 days. They have told us that maybe we could go home after a few days if they appear to be working and then give those medicines orally, but she would have to decide she could take things orally again. She will also need to start eating and drinking again. The surgeons still are not worried, but it would be nice if she would eat something. She has finally pooped, so it does appear things are working and we can X that off of our long list of things to worry about.

Dr. Rahdi stopped to see us today as well. He is good at bringing us a note of gloom each time we visit. This is not to say that we dislike him; in fact, Chris and I do like him. He is very matter of fact and pretty much tells it like it is. I am sure some doctors sugar coat things more but the facts are the same. Anyway, the two spots in her lung were metastatic traces of the disease. That is pretty much what we thought all along. The other depressing news is that her AFP actually rose before her surgery. We were unaware of that fact. Originally her AFP was 668,000 before chemo. Then it went down to 170, 000 and rose to 330,000 before starting a new chemo drug. Before the 4th round it was 60,000 and then before surgery it was up to 250,000 again. Now after surgery it is 58,000. While this is good that it has dropped, the normal range is 0-9. Anything above that range indicates cancer present. So, we have a long way to go. The plan is to change the chemo. protocol for the next round and we will continue until the AFP normalizes. I am not sure where we go if it does not/cannot normalize. I believe Dr. Rahdi's comment was that he did not trust this disease at this stage. These are all things we have known, but have been happy about surgery and feeling like we were moving in the right direction that this is another big dose of reality. It is also another heartbreaking reminder of everything that Leah must endure. She is certainly not the only child to know suffering and pain, but the fact that any child must have cancer is terrible, but when it is your child it somehow seems even worse.

Aside from her fever and vomiting Leah did get to have music therapy class with Kirsten and the music therapy intern. Chris happened to ask Elliot the intern if he knew any Jimmy Buffett songs and he ended up playing a few for Chris on his guitar. Later he even brought Chris a CD she had burned of Jimmy's newest CD. Leah painted with a Child Life volunteer and all three of us had a massage. Aunt Suzanne has come for the night and is reading books with Leah. She even stayed with her while Chris and I went for a walk outside. Tomorrow I am going home for a bit. Chris will stay with her tomorrow night and then I will return on Thursday. Right now it is up in the air how long we will be here. Even if Leah is still here Chris and I are working on finding a way for us to both be at her benefit. Leah is quite depressed that she is going to miss "her party" so we are trying to avoid bringing that up.

Leah is waiting for the computer now so she can watch Brady Bunch. Please keep praying for low AFP numbers and chemotherapy to be effective. Also, pray for her infection to clear up and her appetite to return so she wants to eat again. We have seen the power of prayer firsthand and know there are many, many people that remember her each day.