day 193 December 14, 2009

Monday-This day, one year ago, we found out that Cody had ALL. He had had the biospy and all I remember is my head spinning. I know Corinne, Mary P, and Jean were there at some point that day. It was a day of hell and emotion beyond any that I have ever felt before. Cody was scared and it was so hard to take in. So much of this past year are a blur but so painful too. I keep hoping that it is 'just a year' and we soon can put this all behind us and move forward. I feel it will happen.

Now here we are a year later and just getting home from another visit to Sloan. I think we have things under control and I hope they stay that way. We need to get this behind us. We are looking forward to the Christmas season now and hope we can be home to enjoy it. I try not to make a big deal about it to Cody just in case we have to go back. He has had a lot of letdowns this past year.

We are home and it is overwhelming. He has been needing extra insulin so I am back to giving his injections but with an easier device to use. I have to check it more often. This is because he is getting more steroids and also more sugar with the tube feedings. He is still getting the IV nutrition too. I hope this will all be under control soon. He is in some pain with the tube but the stitches are out and the anchors on either side of the 'button' so it is tender there. He is being strong and not taking the pain medicine. He is sleeping so it can't be that painful.

I have to get up a few times tonight but I am sure we will sleep better here at home. I am just hoping we stay here!