| Sunday June 20, 2004 Paige has had a pretty rough weekend. On Friday we went to the clinic for a blood transfusion and made it home about 3 pm. By the time we were home she was in such a great mood and more alert and interactive than she has been since we began hospice. Some of our neighbors (Carol and Bill) figured out that the way to Paige's heart was Iced Cappuccino from Tim Hortons and they bring her one just about every day :) Poor Carol doesn't get any credit from Paige and Bill gets all the kisses and hugs. Well, on the way to Hurley Friday Paige knew we were passing a Tim Hortons and told Daddy she wanted a "chino." Well, of course we stopped. She took maybe a few sips and that was enough. On the way home she appeared to be sleeping and we had just passed Tim Hortons again when she quickly piped up...."chino Daddy." So, we did the big U-turn to order another cappuccino. When Andy was ready to order I whispered for him to order a small one for her. Well, of course Miss Ears heard me and said, "big chino Daddy." Of course he ordered the big one :) She felt so good Friday and was so happy. Before we fell asleep that night Andy told Paige to wake him in the morning so we could have pancakes. Well, at 5:20 am I heard Paige say "pancakes Daddy" and within a few minutes we were all in the kitchen. She quickly devoured three pancakes and some milk and we were back in bed by 6:30 am. Things were going so well and then changed very quickly. By 10 am Saturday morning she was inconsolable and crying with right leg pain. We were baffled because this huge amount of pain came out of nowhere. It took an hour and almost 25mg of morphine to gain some control of her pain. With the drastic increase in the amount of pain medication we knew there wouldn't have enough medication to get us through the weekend. One of the hospice nurses (Kellie) was planning to visit Saturday anyway and she was able to call H-care and explain the situation. Thankfully, the on-call pharmacist was on her way in to deal with another issue and was able to make a new bag and had delivered it within a few hours. Paige's nurses from Genesys hospice and everyone at H-care are so wonderful we can't thank them enough. Even with the increase in morphine she continues to be very uncomfortable. As of this evening she is getting 11mg an hour continuous with boluses as needed. Within a 5 hours period today we figured that she had 80mg of morphine, and she was still hurting. We added a bit of ativan hoping it might take the edge off and she finally went to sleep around 10 pm. We're planning to call Dr. Akl in the morning to see if radiation is an option and hopefully that will bring her some relief. It's been such a mix of emotions with all of us, especially with Father's Day today and Paige's 3rd birthday tomorrow. This is supposed to be such a happy time and instead we are watching her go through such pain and suffering. Never would we have guessed a year ago that we would be walking in these shoes today. Since it will be such a busy day tomorrow we will plan to update Tuesday unless there is a major change. Again, we are truly grateful to all of you for the continued prayers and support. Love, Andy, Sandi & Paige |