Hello everyone,
Luke and I got back from Cancun last night. We had a very relaxing trip and some quality time alone together. The kids had a good time with their grandparents and all is well.
We have received word that the antibodies and related treatments in New York will be covered. That is a great relief to us.
I got Nathan's immunity results, but did not get to talk to his doctor about them yet. His immunity to chicken pox was wiped out with the transplant. I do not yet know if reimmunization would occur anytime soon. His other result which is the IGG is 898. The is a measurement of his overall immune system strength and it a very good, normal number.
Nathan's most recent round of accutane affected his skin more than usual. He has a few sore on his face and a nasty rash on his arms and legs. I do not know if the rash is directly related to the accutane or not. He finished the accutane Wednesday morning. My mom thinks the rash appeared Thursday or Friday.
We are still trying to get his kidney test done. I will call tomorrow to see if I can get it scheduled before we go to New York. I am thinking that will be unlikely. We may look into just having it done in New York instead. He is scheduled to see his oncologist on Thursday, but that conflicts with his preschool meet the teacher time and so I will be moving that appointment but I need to see what happens with the kidney test. Whatever happens I will try to make it so he only gets stuck for blood one time this week. As it is, he starts his GM-CSF shots for the antibodies on Wednesday.
We head to New York on Saturday. It has just come around too soon! Our good friends Janene and Joshua won't be there with us this time since Joshua had his antibodies early this round. It is going to be lonely! We are going to make plans of some sort for our weekend in between. The last thing we want to do is hang out at the Ronald McDonald house all weekend. I know it is a great service to all the families and I am not knocking that...it just is for me the most depressing place to be. Not even because it is filled with sick kids, more that it is dark and ugly and dirty...yuck! Anyway - I have gotten that out of my system and I am thankful to stay there because if I had to pay for lodging for two weeks it would cost twice my monthly motgage payments! On a happier note I am looking forward to seeing my family and friends who live there and Nathan is looking forward to Toys R Us and Times Square.
So - I hope to have a better idea of what the week looks like tomorrow and will let you all know what is going on.
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