Friday, April 25, 2003

Friday, April 25, 2003 9:39 AM CDT

Luke here...

Nathan was in the clinic yesterday for a platelet transfusion and to get his blood counts. Good news on his counts, he is coming back up very well now. From Wednesday to Thursday his white blood cells shot up and the calculation they use for his overall immune system status jumped him from out of the high risk for infection range. In general he is feeling better, doing more, and much more engaged. He still refuses to eat or drink and that is troublesome. He yawned wide this morning and said it hurt. He really has demonstrated a pretty low threshold for pain in the past and it is going to make things hard with eating when he has these mouth sores. He is tied to a rather large backpack that carries a nutritional supplement and pump that "feeds" him through his broviak. It is become tiresome to follow him around carrying his backpack. We will obviously continue to do what we have to do, but if we could get him eating well enough to get off of that supplement for at least a little while each day it would be wonderful.

We saw the more conservative of his doctors. He really didn't want him out and about this weekend even though he is out of the high risk range. We will have to balance what we feel is best for Nathan versus the risk. He is scheduled to start his second course of chemo on Wednesday. Next week will likely be a transfusion (red blood cells) on Tuesday followed by full-day chemo treatments Wednesda, Thursday, and Friday. Then his little body will start to collapse on us again. The doctors hope the first round cleared up his marrow enough that he won't crash as soon and will rebound quicker. It is hard to say though. We would love for him to do some normal things before we start this all over again.

Before the chemo on Wednesday they will do a bone marrow biopsy to see how effective course 1 was in treating his marrow. The hope is that after course 2 they can do the bone marrow rescue to store his cells for the transplant to be done after all courses of treatment. They want to do it early for several reasons, one of which being that storing the cells has a positive effect on the number of cancer cells that live in the stored marrow. They don't take it until they can't detect cancer, but it is possible that some are there and escaping detection. Apparently the cancer cells don't handle long-term storage well. I found that interesting.

I'm rambling on a bit this morning. I'll close here with a somewhat sad Nathan quote of the day. I don't mean to depress, but to share honestly with everyone Nathan's journey and state of mind. Susan went to pick up Julia from the friend who was watching her while Susan and Nate were at the clinic. The friend has a little girl that just turned 3 who is one of Nathan's best friends. Catherine came out to the car to wave and say "hi" to Nathan. When Susan got back to the car, Nathan obviously remembering how he used to play with his friends said, "I used to do everything."

The micro level good news here is that he is feeling better and acting happier. Obviously the main goal is the macro one of ridding his body of this horrible disease, but our day to day focus is just to try and comfort him and make him happy and doing normal things. There are big wins when he is acting better as he has the last couple of days. Hopefully next week we will get good news that there are signs that he is reacting well to treatment.

Probably won't be too many updates for the weekend. No clinics, no tests, and hopefully no hospitals.