July 16, 2014

Wednesday-So today started out a little shaky.  Matisse, Cody's little cousin came to Sloan today to get his last dose of pentamidine.  It is a preventative medication for pneumonia.  He has gotten it before but this time it just did not agree with him.  We are sitting on Cody's room and his IV was going and he said his throat was bothering him.  He got a drink and then he just said he was tired and that he did not feel well.  He said on his dad's lap and became lethargic.  I ran to get his nurse and then the rush of drs and nurses came in.  It was scary and Cody was on his bed and was just watching.  Matisse said he couldn't breathe and so oxygen was started.  The pentamidine was stopped and fluids started and he slowly started to perk up and his color resumed.  He was moved to a bed and rested a little while and then he was back to himself.  It was strange because the reaction happened pretty much when the infusion was ending and he has the med several times.  Thank goodness it was his last dose.  He is doing VERY well and leading a pretty much normal life now.
Cody was fine and is doing well.  He is eating and even the drs are impressed that he eats through his chemo.  I met a family today that is just starting out with the same cancer.  Their son is 16.  It is just so sad.  They are so scared and I tried to fill them in and offered my help when they might need it.
I am happy to say that my buddy Sam is back in town.  He is doing well too!  He is actually scheduled to get his port out.  He is the 27 year old that had his first diagnosis of Ewing's at 21.  We met him last year.  He relapsed but seems to be doing much better.  He is staying with a friend in Poughkeepsie I think.  I met him in the hallway and he looks good too!  We tried to plan dinner but he has a hard time sitting.  So we decided to pick dinner up for him and bring it back to Ronald for him.  (We got bumped out of our hotel.) We hung out in the 'living room' here at Sloan for a while.  He is a great young man and has no family support. So sad to me.  He is doing this all on his own.  He was so helpful to me when Cody was first diagnosed, telling me about this cancer, etc.  I ran down to get ice cream and made a delivery to him.  He is very thankful and appreciative.  He seemed so happy to have us to talk to.  I wish Cody would be more interactive with him but you cannot force that.
Sweet dreams to all...