We had such a great week with family and a painful week for Nick. Where to start...... The Wykoff family drove up from NC to visit (Karen's sister and family). We were all so excited to see them, it has been a year since we have seen them. The Love family hosted them but we had sleepovers with Justin and Luke each night. Nick was on steroids last week and the pain started to kick in by Thursday and we could tell his red blood cells were dropping. He was tired most of the weekend, but tried to make the best of it. He would lay on the couch and watch all the kids play, at least he was part of the group. The best part of the whole trip is just having the entire family together. Karen's mom and dad were there to along with Aunt Jean and Julie. The time goes by so fast. I know Greg and I have tried to thank all the people out there and we really do not do a good job of recognizing our family.... they keep us together, they support us not matter how hard our day has been and we know they will always be there. So, thanks from the Shannon Family.
Greg and Colby took Nick to clinic on Monday. We knew he would need a blood transfusion and receive his last shot. He received his last shot and did not even cry..... he asked the nurse to stop right before the shot because he wanted to say one last thing: "I never want another shot in my leg again." and then it was over. While I feel like 30 weeks has been going on forever, it has also flown by. Greg and I always re-play in our head from day 1 (when he was diagnosed) and forward. We are still moving forward with his protocol and this is our goal. As we had suspected, Nick did need a transfusion, but we decided to wait until today, since he was coming back for chemo anyways. The clinic had the lab 'order' the blood and they had it ready today for him. The visit was actually pretty quick.
The PAIN. Nick was again, after the steroids, in so much pain. He has been screaming out in pain for the past two days and can barely walk because of it. We have been alternating the Tyl w/cod. and morphine to help it, but sometimes there is nothing to help it. It is so upsetting to see him like this and at the same time, we try to get him to move around a little to, hoping stretching his muscles will help. It's frustrating to not understand exactly what is causing the pain to be so severe. We think steroids, but it could be the new chemo he is on. Since every child is different the doctors can never pinpoint exactly why each child experiences pain and where they experience it. Sounds like a lame answer to Greg & I, but I know we are not alone. We look forward to the next day and hope he is stronger. I am off to help Greg with Nick's daily bath routine. For some reason, he likes to takes his baths everyday around 4-5pm, he is like clockwork. I guess that is a good thing.... we always have a clean boy. Take Care, Karen
