| June 6, 2004 Sunday What a nice weekend we had :) On Friday Paige received radiation to her right groin and left wrist and her complaints of pain in those areas seem less. They were planning to radiate the left jaw and the enlarged lymph nodes below both ears, but she couldn't tolerate the machine being that close to her head. We had already given her almost 20mg of morphine and she was still awake. Dr. Akl said that if the pain in those areas continue to be a problem then we would give her IV sedation prior to radiation. We'll just see how she's doing this week and make a decision from there. Overall Paige's pain is much better controlled than it was last week and I'm sure much of that is attributed to the radiation she's received. She is sleeping a more and her appetite continues to be poor - even though she did wake up around 4am last night and ate almost an entire glazed donut :) The poor appetite I can deal with, but it's hard for me to deal with the decreased fluid intake and therefore she's not making much urine. Yesterday it had been about 20 hours before she was finally able to go. I can't tell you how close I was to hooking her up to the IV and giving her some fluids for hydration. We understand that this is the body's natural way of slowing down, but the feeling of guilt that we're not doing anything for her becomes stronger and stronger everyday. On a brighter note.... As I mentioned the weekend was good. Friday night Paige's cousin Ashley stayed the night. While they aren't able to play and laugh like they used to, they still love being around each other. Actually, Ashley ended up staying the entire weekend. On Saturday afternoon we went to art fair downtown Flushing and followed with lunch at the A&W. We were happy to see one of the music therapist from U of M there playing her harp. During Paige's transplant she came around and played for Paige and had a small harp that Paige would play. It's such a soothing sound. Later in the afternoon we went to her friend Jackie's 3rd birthday party. Even though Paige was in my lap for most of the time, she enjoyed watching the girls swim. After we went inside for presents, cake and ice-cream. Earlier during the day we had gone and picked out a fish for Jackie and got one for Paige also. Paige loved it and decided to name it "fish." Well, as soon as Jackie found Paige's name she decided to name hers "fish" also :) On Sunday we stayed around the house. Early afternoon we had a nice visit from Dr. Inoue and his wife Mary. Later Aunt Christina arrived from Ohio with cousin Alex. Thankfully Christina's mom was able to come in from California to watch Johnny and Emily while Uncle Jay's at work and school so Aunt Christina could come up for a much needed visit. It was a busy, yet enjoyable weekend and we hope for a good week ahead. Thanks again to everyone for your continued love, prayers and support. Love, Andy, Sandi & Paige |