Wow--when I clicked on this thread, I remembered the picture. The hair on my neck stood up, thinking that an update to this post wasn't gonna be good
My thoughts are with you and the family.
I have a good friend whos son lost the battle last Febuary at age eleven, after a 6 year battle. During his treatment, I was building a Vans RV-8 in our shop. He was a cautious type, and was looking it over one day. I asked him if he would ride with me when I was finished, thinking he would say "NO WAY". He thought about it for a minute, and asked if there was instructions. After I showed him the manual, he said "I will go with, but only if you follow the instructions"
Unfortunately, he lost the fight a couple months before my first flight, and we never did get that ride.