December 12, 2005

We have been home for a few days now, and would like to report that Leah is running around just like she normally does. This is not the case. She definitely acts sick much of the time. This is causing both parents a bit of stress, but when we call Iowa City they assure us that the medicine they have given her is quite strong, and may knock her down for a bit. I am not sure this makes it any easier to see her suffer, but we do know it is part of it. We have tried to do a few things that we normally enjoy-visiting Grandma Kathy and Grandpa Daryl and making cookies there, seeing GG (my grandma) at the nursing home.

Today was our first blood draw at Covenant Hospital in Waterloo. This will be a part of our weekly routine for the next six months. Leah was concerned immediately that we would have to stay, but I assured her that it was a five minute job and we could go. And, it was. Mondays will be her day to get her finger poked and blood drawn. Those results get sent to Iowa City and they then call us with the results. When Mary S. from Iowa City (she's Mary in the Middle) gave me her results, she was pleased with all the numbers. The white blood cells, neutrophyls, and platelets are still in the normal range. Her hemoglobin is low, however. The normal range is 10-12 and hers is 7.8. This means that she is anemic and acts droopy and appears pale. While some kids operate fine at this number, Leah definitely does not. So, tomorrow we get to trek back to Iowa City and get our first transfusion. This is all rather depressing, because since we are starting transfusions so early in the game, we worry this will become a weekly event. Yet, we have to take all of this one day at a time, and if this is what Leah needs, we must do it. I am sure she will be upset again tomorrow once we are there and she realizes they will be doing more poking and prodding. The other thing Mary reminded me when I spoke to her, is that while these numbers are quite good, it means her blood counts have not plummeted yet. They should continue to go down throughout this week yet. That is another reason to receive a transfusion tomorrow. Since we know that Leah is already at 7.8 and she will sink lower, waiting until Thursday when we visit Iowa City would not be a good plan.

As I mentioned before, Leah is only taking little bits of information in at a time. We have talked about various aspects of her treatment with her, but since she is four it is never a long conversation or in depth. Yesterday it finally hit her that she will be losing her hair. We both shed a few tears over this. Of course I know it will grow back, but baldness will be a very visible reminder of what is happening to her. Considering she hates having her hair washed or brushed, one would think she would not mind the loss of it so much.

Today Chris went back to work and I had a meeting with Human Resources at the Waterloo School District. While my time will not be paid, they are being quite generous in giving me the days that I need, and at a moment's notice if needed. It is good to have some of that sorted out as well, and I am glad that Chris was able to be away for a bit and think of other things.

The phone calls have slowed down a bit, but we enjoy the cards that we are going through (and not getting through as quickly as we would like) and the emails. And we continue to hear of more people and churches that are praying for Leah every day. Please continue to pray for Leah and her health, as well as for her to adjust to the aspects of treatment she faces.