Dj started round 5 of 12 today at clinic. To be honest, I thought he would be delayed due to low platelet counts again but I was wrong, wrong, wrong. His body was ready...woot woot. (who would ever be happy for their kid to receive chemo (life saving poison), its a very twisted position to be in) This morning was pretty rough. His compounded oral chemo (Temodar) we are no longer getting out of MD Anderson. Change in insurance and the over cost monthly to get to Houston has now become to great. So we tried mixing the 4 pills (YES four pills is what he is suppose to take daily during chemo week...YUCK) with juice to take as a shot. The taste was so nasty. I wanted to cry with him. He chocked most of it down but the delivery of the medication was not the pharmaceutical recommended way. The medicine possibly losses its effectiveness if not delivered in pill form, but where is the consideration for the little patients? These are the little things that make we want to get up and march to Washington DC in order to lobby and fight for our kids to have medicines tailored for their little bodies. This sore subject makes my heart hurt. As if battling for your life isnt enough. Dj sports his new Peachs Neet Feet kicks everywhere right now. He is in love with them. Djs Amtryke is in the works. Its been paid for and ordered but it looks like we might be delayed because the model is back ordered. Hopefully we will see it by mid September. A praise report is that Djs bike was less than we expected so we went ahead and put a portion of the funds raised to a friend who has a Amtryke on order too. :) Gotta keep paying forward. Thank you all for your love and support. We have said it 1000 times but prayers for Dj, Jaxen, our family and all the other battling children is more than we could ever ask for.
Posted on: Tue, 26 Aug 2014 03:52:55 +0000
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