Bashing furniture and stomping on the floor

Update by Grandma. March 8 2012 9am. I stayed with Will in hospital last night giving Lois and Randell a well-deserved break. It was so much fun being in a bed next to Will. We played IPod games, Xbox games, flew little airplanes and catching up on personal news and watched a movie on TV. And giggling about a few ‘do you remember when’ stories from the past. Grandpa Jacques is traveling in from Arkansas today - for the first time since Washington DC (Will’s Make a Wish Trip) we will all be together again; making memories.


Life should continue as if normal. That is what the Dr and staff said in the meeting yesterday. Keep up the discipline. So this morning when Mike, the nurse, brought medicine to be taken by mouth Will refused to take it. At first I just sat there watching Mike’s face, and I could see he is going to back off. I took a deep breath and told William in the sternest voice I could make up – you will take this medicine- it is not negotiable. And so a 2 minute long argument started and at the end Will took the medicine and pulled his worst ‘this taste bad’ face. I told him to fix his face and he did. Normal feels right.

Will is in constant pain and is receiving Fentanyl (a narcotic similar to morphine with fewer side effects). One of our daily objectives is to strike a balance between managing the pain and him being alert enough to be sociable. He also has a button that he can press to control his own medication when pain gets worse. Starting today he will wear a Fentanyl patch and the IV will be turned down slowly and eventually unhooked. We are preparing Will to be mobile and free from all the IVs for when we go to Disney and the long travel back home next week. Back home we will start the necessary IVs again with the help of Hospice.

I am learning to play Lego: Indiana Jones, original adventures on Xbox. Ever played it? Quite an aggressive game – the little character have to destroy a lot of things to get points. Kinda what I feel like doing right now; bashing furniture and stomping on the floor.