Update

Just wanted to give you all an update. I enjoyed an entire week off from hospital visits. I don't think there has been a week that has gone by since all this started that I haven't spent at least one day at the hospital. I didn't have any visits at all last week. Boy, was that nice!! It was so great just to be home and do normal life, like school, playing outside, and just being together!


We had a clinic visit on Tuesday. Sarah continues to do well. Her counts finally dropped, which I have come to understand is a good thing. Basically, they are trying to kill some of the "bad" cells that are causing problems. When her counts go down, that signals that the medicines are doing their jobs by killing those cells. Go figure. The doctors decided that they would go ahead and taper down her steroids some more. I communicated to them that in my opinion she is getting very little, because she spits them out. Basically, by doing this, we will be able to tell whether the steroids are a necessary part of her recovery. If she continues to improve, then we can hold off, but if she relapses then we will have to revisit the topic. If you would pray that she continues to get better without the steroids. It really is a daily battle, twice a day, to get her to take these meds. The goal will be that in two weeks, she will be completely off the steroids, and as a result three other meds as well, leaving only one remaining med that she will need to take.

I am coming to realize more and more that we are in this for the long haul. I knew that Sarah would have an MRI every three months for at least a year, but as the doctor reminded me yesterday, that she really could relapse at any moment. That does not mean that the cancer necessarily has come back, but she could get a virus that could send her body into thinking that those cells are back, and begin attacking itself again. She is working so hard with all her therapists, that it would be so sad to see all that work reversed. Starting next week, we will have three different therapists coming into our home. Two physical therapist, and one occupational therapist. The girl is being worked hard. I am so grateful to all these people. I know it's their job, but they really seem to love what they do. They get as excited as I do when they see improvement in Sarah and really do seem to enjoy working with her. (How can they not, she's just too cute!)