| May 20, 2004 Thursday Today has been a much better day than yesterday. When she woke up yesterday morning she had so much swelling that she was unable to open her eyes. It was obviously uncomfortable and I'm sure scary that she was unable to see. Late afternoon we met with Dr. Akl and he felt that radiation would help alleviate some of the discomfort. At first he mentioned setting up the appointment so anesthesia could be present for the sedation. We said that due to the circumstances and as long as he was comfortable with it, we didn't feel it was necessary for anesthesia to be there. He was in agreement and they were able to do the radiation with a dose of morphine. She did so well. Of course I had to sing "You are my sunshine" to her over the speaker with everyone listening, during the few minutes she had to be still. Whenever she's having a procedure done, even something as simple as taking her blood pressure, she'll say "sunshine" and we usually sing it together. For whatever reason it's always brings her comfort. Early last week Nana and Pop-pop had planned to leave Wednesday for Ohio to watch Jay and Christina's kids so they could come and visit for a few days. Well, we felt it wouldn't be a good idea from them to go now. So, our good friend from Pennsylvania, Teresa and her son Drew, drove to Ohio yesterday and Jay and Christina arrived here last night with baby Alex. It's been so good for Paigey because she just loves to "mother" him. We were relieved when we woke up this morning to see the swelling had slightly decreased and she could at least open her eyes a little. Right away she asked Daddy for pancakes, a morning ritual for the two of them. While her appetite hasn't been the best, it was pretty good today. Even though she didn't try walking we feel the radiation has helped since she doesn't complain of leg pain with every little movement. It's so hard to try to find a happy median between pain control and sedation. Since Monday evening we've been in close contact with the hospice nurses assigned to Paige (Dan and Kelly from Genesys Hospice). They are so wonderful and having them around is such a comfort. After working in the medical field it's sometimes difficult to separate ourselves and remember that Paige is our child and not our patient. While they include us in every decision, they've helped to lessen some of the pressure we tend to put on ourselves. We're so thankful that this newly developed pediatric hospice program is available to us. Also, we give thanks to all of the wonderful people at the Genesys-Hurley Cancer Institute who made the radiation process go so smoothly yesterday. Dr. Inoue, Mary and Dr. Yanik continue to call - how fortunate we are to have such caring people take care of Paige. Again, thanks to everyone for your continued love, prayers and support. We are truly grateful. As always, we will take each day as it comes and continue to enjoy the time we have with Paige. Love, Andy, Sandi & Paige |