| May 25, 2004 Tuesday The weekend went pretty good considering. The radiation Paige received on Thursday helped tremendously and the facial swelling is completely gone. Yesterday she appeared a little pale and her irritability had increased so we did have her bloodwork checked to make sure she didn't need blood - everything was OK. She seems to be sleeping a little more and her appetite has definitely decreased. She'll ask for something specific to eat and as soon as we get it she doesn't want it. As parents, we're finding the entire scope of hospice harder and harder to deal with emotionally. While we realize we've done everything possible to treat her, it's hard not to feel as though we're giving up. To sit here waiting for this disease to win is so heartbreaking - how we wish things were different. Up until last night we were able to keep her pain under control with only a few small increases in her pain medication. During the night she woke up crying that both of her legs were hurting. By the time we had increased the morphine to the level needed to control the pain she was a bit sedated. Right now she's running at 1.7mg an hour continuous and then she can have 0.7mg every 10 minutes if needed. This afternoon we called Dr. Akl, the radiation oncologist, and he told us to come in right away. They radiated both legs from the top of thighs down to just below her ankles. We're hoping this will bring her relief within the next 48 hours. We're so grateful that Dr. Akl and his staff for their willingness to take care of Paige on such a short notice, especially since they don't regularly treat children. We're so looking forward to a sunshiny day where we can at least get outside. We've been trying to get her out of the house daily - usually at her request. We've gone to "get fries and go to carwash" and yesterday she wanted to go to the "Minnie Mouse store for eyore." Today she wanted to go "get Chinese chicken", a favorite of hers. While she may only take a bite or two it's worth the trip if it makes her happy :) We're so touched by the outpouring of love and support we've received from our family and friends. We thank all of you. Much Love, Andy, Sandi and Paige |