Friday, September 23, 2005

Friday, September 23, 2005 7:55 AM CDT

Well - counts are still kind of crummy. His white count was up as a result of the medication. I don't think I mentioned it is in shot form - Nathan is so good about it. His white count is only up a little however... His hemoglobin is about the same and his platelets are lower. I am beginning to really worry about his bone marrow. He does have some stem cells stored but we really need to save those for future treatment. After surgery we had thought about trying to colect more stem cells but it is pretty clear that he has none to give us - so I am glad we didn't go to all the trouble trying to get some. He will me on the medication (neupogen) through today and then we wills top on the weekend and see what his counts are on Monday. Monday will be a day shy of 4 weeks since chemo.

They repeated the tests on his blood that show inflammation. One didn't get done I guess - but the other was down quite a bit from last Monday. So - whatever was going on in his body (probably this leg thing?) seems to have resolved itself. Monday I will discuss with his doctor the timing of his next MIBG scan and Luke and I will need to decide if we are doing it here on in NY.

Nathan fell asleep on the way to his appointment. This is very rare for him. He was very unhappy when he woke up and had to walk into the clinic. He threw a fit remarkably like one of his post-narcotic psychoses. Fortunately he did walk even though he screamed and complained the whole time. If he had refused I guess I would have had to have someone bring a wheelchair down from the clinic. It is odd for me to be at a point where I can no longer carry my child! If I weren't pregnant I suppose I might have been able to do it. As it is every step I take hurts these days.

As far as non-medical - things are going well. Nathan told me the other morning how much he like to go to school and that his favorite part of school is learning new letters. He seems to have lots of friends in school. One little boy has been begging his mom to have Nathan over - so on Wednesday after school she asked if Nathan would like to come over sometime. I told her our schedule is difficult to predict sometimes and then I said he might have chemo next week. She asked me to repeat myself and I said chemo and then said something about that Nathan is the one with no hair. I just assumed she knew! Yesterday when I saw her again we had our phone numbers to exchange and I told her I hope I didn't freak her out and she said no, of course, and said her son had told her Nathan had no hair but she thought he just meant Nathan had a buzz cut or something! Anyway - hopefully he will have a playdate next week. As for hair - I think the light chemos he has had have kept it from regrowing. There is some whitish baby fuzz - but no real hair.

So - we are still playing the waiting game...waiting for counts, chemo and vaccine...but Nathan is feeling good so that is what matters right now.