August 17, 2006

The Happy Birthday Girl--5 years old!

I finally got one picture on the blog, so we won't press our luck today.

This morning we left at 7:15 AM for Iowa City--and drove in pouring rain almost the whole way. Chloe stayed at daycare and Chris worked, so it was just Leah and me.

We did not get there early for our appointment, but ended up waiting, which we don't usually do. Tom was Leah's nurse and accessed her port. Then we saw Anubah, one of Leah's favorites from staying on the floor who is now a second year resident. She looked Leah over and then came back later with Dr. Rahdi. Leah has grown another half an inch--making her 38 inches tall (she was 37 inches when treatment ended in June). She is 31 pounds, so has lost a little weight, but everyone thinks she looks great. Her hemoglobin is up to 12.3 which would explain the energy she continues to have. Leah had another chest X-ray which I found out she will have at every visit. Just another way to monitor if anything would be in her lungs since they only scan her once every three months. Leah is getting good at X-rays-a long way from her tears in December. She lets them snap their pictures then looks at them with the techs after they are done. Those looked good as well. The AFP is never done very quickly so we had to eat lunch while waiting for the results. Much as I want to know, I also don't want to know. So, even though Leah really wanted to visit James on the 7th floor, I made her stop by the clinic to find out our lab results. Tom looked them up for us....the AFP is 2.6, just up a little from last time, but still normal. Dr. Rahdi came to discuss them with me and told me that Nita, the nurse that he works with made the comment, "Her mother should be pleased with those results." To which Dr. Rahdi replied, "You don't know her mother!"Of course all I could see was that the number had risen, but we have been told numerous times there is a range of normal (0-9) and obviously the number cannot be lower every single time. Other factors, like growth affect the AFP, so Dr. Rahdi is not concerned and told me not to worry. I'm sure he knows I will worry, and will do a lot of praying, but 2.6 is still a very good number.

After finding out lab results we headed off to see James. Leah was very cuddly to him and just wanted to sit on his lap. She still does not know he is coming to her birthday party. We had an echocardiogram scheduled for 1:30 that we went to next-Leah did an awesome job! Her first echo. did not go so well, so the last two were under sedation during CT scans. Today, though, we were in and out of there in 20 minutes. This is to monitor damage to her heart from chemotherapy. I asked how often this test will be administered and it is only every 2-5 years, so I think we won't be doing that again for a while, even though it went smoothly.

We had to stop back in the clinic before leaving and when Tom asked Leah for a hug she ran right up and sat in his lap. This is such a far cry from her behavior when all of this started. Much as I wish we never had this experience or that Leah would be so familiar with all things medical, it is still a good feeling to know that she cares about the people that have helped to take care of her and feels safe with them.

I had one brief discussion with Dr. Rahdi that I told Chris was maybe the nicest thing he has said so far to us. Somehow we were on the topic of recurrence/relapse and I told him I did not want to know at the same time he told me he was not going to discuss that with me. He reminded me that Leah had a high risk disease, but people have survived high risk diseases and at this point we have no reason to believe that her cancer is ever coming back. So we will just take it one day at a time and if it would ever come back we will worry about that then and treat it at that point. Ok, so maybe that is not the most uplifting conversation, but it is honest, and at least not a prediction of doom.

After coming home Chris and I took the girls to the circus here in Denver. While Chris and I were not that entertained, the girls were. Leah has really developed more of a "no fear" attitude and rode the horses and camel. Chloe rode the horse, and would have been on the camel in a heartbeat if we had let her. Now we are trying to relax a bit before bed. Tomorrow we are having a new vanity put in our bathroom so I should attempt to pick up a bit.

Our next appointment will be at the end of September. I am glad we are not going back before then but that seems so far away right now. All we have until then is to get her port flushed once at Covenant so it does not clot off. It will be a nice 5 weeks to get back into the school groove and a normal routine. Please continue to send your prayers for a very low AFP in September and Leah's complete healing on earth.