May 21, 2008

Hello everyone!

Well, we had clinic yesterday and things went as good as possible. Alex hasn't felt well at all over the last week, so it was just an OK visit. She lost almost all the weight she has gained back over one week, so that sucked. Other than that, things are fine, it just wasn't her best week. She has had a low grade fever going on since Friday, but they were confident that it was just due to a cold that she has. Her blood counts were all horrible. She was borderline needing a trasfusion on both the red and the platelets and her white count was pretty much non-existent. They really like the counts to come up on their own, so she was sent home without blood for now. We are going back in tomorrow so Alex can get another MRI, so they will check her counts again if she is still feeling like crap and then they can transfuse then. Hopefully she will feel a little better by tomorrow. I spoke with her neurologist last week about the Lovenox shots, and she said that she wants a MRI done before the shots are stopped. This will give her an exact image of what things looked like at the end of the blood thinners incase there is a problem down the road. I can't tell you all how excited Alex is to get rid of these twice a day shots! In some ways I can't believe it has been 6 months since she had the stroke... and other times I think this has been the longest 6 months of my life. I can't even tell you how different things are today than they were 6 months ago. Alex has come so far... there are doctors at our clinic that are just amazed by her progress.

When I talked with the nurse yesterday in clinic about how Alex was feeling, I learned that all of this is normal. I guess it is just hard for me because Alex has been doing so good that it is really hard to see her so "down" again. I asked if all the chemo from the last two weeks were cumulative, and it is. That explains a lot... then the nurse went on to tell me that people think the ARC is an easy chemo because they allow parents to do it at home, but she told me that ARC is not a mild medicine... it is a big, heavy hitter and most feel really crappy right now. This was the first time that Alex has had to go to clinic carrying her pink bucket in a long time... sucks to have her so sick all the time. SO, no pictures this week.

I will update tomorrow or the next day with the MRI info... and hopefully remember to get pictures this time.

Thanks to everyone for your thoughts and prayers. They are, as always, much appreciated.