1/4/08 update 7

Ok I have Zack settled in bed and now I can do a blog. We had his 3rd infusion today which we thought was going to be a breeze. In this study he is to have 4 total infusions, we believe that the first 2 he got the medicine because he had such bad reactions to the meds. Well, we went today and had more side effects and had to go real slow. It started off great and a few hours into it he got this real deep cough and got a fever, both of which he got the first week. We had to stop the infusion and give him some other medicine to calm it down. A few hours later he got a fever again and was ready to rip someones head off, boy he was not happy. He got real clammy and we had to reduce the medicine again. He really is not a mean or cranky kid so seeing him like this is terrible and he really feels bad after he calms down. I feel so bad for him when he is so helpless and crying so much. At one point I thought his nurse was going to start crying too. All in all we do still think he got the medicine the first two rounds and think he is just receiving the placebo now. He is in another flare up which means his disease is active and making him weaker, which is discouraging for me because he is going through all this and I don't feel like its working. His Dr. sat me down and explained to me that it will take longer than this to see results. We really love the Dr and all the nurses he deals with at Stanford. They are really great people. We go back in another week to do his last infusion and see his progress again. We will find out on week 28 of the study if he will get more infusions. (we are at week 9) He cant wait to go back to school and see his teacher and friends. I took some pictures of Zack today and will post them as soon as I download them.