July 28, 2006

Pool time on Thursday! The Denver Pool is back in business and Leah, Chloe and Chris had a great time playing in the water. (I also promise that I won't put new pictures up each time I post, but we purchased a digital camera this summer to record some happy summer memories and I am enjoying using it).

We left for Iowa City at 6:45 and got there in time for our appointment. There was some confusion at first whether we would be seen by anyone or just having labwork done, but of course we were planning on a visit with Dr. Rahdi. Leah got to have Tom as her nurse and he quickly accessed her port, drew blood and then removed the needle. Then we got to sit and wait for the results to come back. Obviously this is quite stressful. Chris and I did not even talk about it ahead of time, but the results are so critical that days before these visits the level of tension and concern is much higher, and it is always in the back of our minds. Even though we will always worry over AFP numbers, it will be wonderful if we can get several normal readings as the months pass by. So, while we waited, Dr. Rahdi checked Leah out. She was probably her most conversant and happy he has ever seen her. He looked at her Montana pictures, felt her stomach, and then discussed things with me.

Leah does have some damage to heart function from her last chemo. drug, doxirubicin. They are monitoring this through routine EKGs that are performed. Right now they are hoping that this damage will be repaired over time. We even had a chest xray yesterday as a precautionary measure. We discussed the risk of a second malignancy due to chemotherapy drugs, which of course exists. So, happy topics-NOT. The AFP result was not even back right away so we visited James who was working on the bone marrow floor. Leah was busy abusing him--we hope James was able to make it home last night after his most recent beating. He thought Leah looked great and could tell a difference in her energy level and happy personality, too. She giggled and ran after him for quite a while. Then finally after I could delay no longer we returned to the clinic to get our lab results. Dr. Rahdi was pleased to tell me "good news and more good news." Even as I entered the clinic Tom was giving me the thumbs up signal for our lab work. Leah's AFP is 2.1. What a great number! As Dr. Rahdi pointed out, my AFP and his might both be higher than that because normal is 0-8.9. And, her electrolyte levels are balanced, so we are going to try to stop all medications. That means a blood draw next Thursday at Covenant to check and make sure things are still OK, but that will seem great to not have to give daily doses of different drugs. We are still on bactrim for a few more months-just Mondays, Tuesdays and Wednesdays. Interestingly enough, port removal was mentioned, too, for a few months in our future if things continue to go well.

We feel we are certainly witnessing the power of prayer firsthand and ask that you continue to offer prayers for Leah's continued healing. A few weeks ago at church Pastor Feldt's sermon centered on the topic of miracles. He discussed how often we ignore things that happen today and don't recognize miracles anymore. All I kept thinking was that there is no longer a day that goes by that I don't recognize that miracles can happen and watching Leah run around feeling normal is truly a miracle.

We did manage a bit of shopping and lunch at the Olive Garden. We stopped at Barnes and Noble after lunch in Cedar Rapids and Leah picked out a few items. We have been reading a chapter book at night now and are working our way through the Carolyn Haywood Betsy books (the original copyright dates on them are the 1930s so sometimes we have to do a bit of explaining). At first Leah was skeptical of reading such a long book, but she is quite into it now. Anyway, she wanted to pick out a new chapter book and ended up picking out Little House in the Big Woods. I never really thought about how she arrived at her choice because I was looking at something else when she chose it. Later on at home I told her babysitter that she had picked out a new book to which she then supplied the title. I asked how she knew what it was called and she informed us that it said that on the cover. Chris and I have caught her reading different things now for quite a while, but when asked to read a word for us she gets very annoyed. She also told me she wants to read it "quiet in my head like you do." So, she was very serious about finding a quiet place and telling me which page she was on. I doubt she is getting anything out of it except she did pick out a few words for me or ask me questions about something she read and I would have her show me that phrase or word in the book. As a school librarian who is never without a book herself what could be more exciting to see in your own child?

As you can see from the picture, we did go to the pool, too, and even the farmer's market in town. Both girls are still in bed but it looks like another gorgeous, hot summer day here. We are supposed to meet our friend, Heather, for lunch. I should start scrapbooking again, too because it is less than a month until school starts and I have plenty to do.

Please continue to remember Leah in your prayers as she continues to do well and enjoy each and every day!