Man, sorry to hear this.
As a father dealing with a sick child (sitting in childrens as I type), my heart goes out to you b/c it sucks not having any power to change things for your child.
You are at a great place, one of the best in the world, so you can at least wake up everyday knowing that your family is in great hands they place children above everything else.
I have a nephew who is 9 years old starting a battle with A L L and my child who just had a kidney transplant a few weeks ago...I am up here all of the time, if you ever need anything..never hesitate to contact me..
my e-mail is ndmurf12@yahoo.com..shoot me an e-mail and I will give you some info on how to contact me.
http://murf-seriously.blogspot.com/