It is weird to blog for me when I see Nick feeling so well, from the last update. His steroids definitely kicked in early this week and Greg took him food shopping right before the first dose. We try to figure out what he will want to eat during the week. Greg came home with a good mix of food. It turned out Nick really wanted Tostitos and Bagel Chips this week. We went through 2 bags of each and then I headed to the grocery store for more on Friday. Of course, rushing through the store I ended up buying the jalapeno tostitos chips and realized when I got home it is was wrong. Nick also added a couple more foods into the mix, so it was another trip to the grocery store.
All of that, with making his pills is okay to handle. If you remember we have a great way to make the pills. We take a Starburst candy, put it in a paper cup (the ones you find in the hospital or our brother-in-law (Mark) gives them to you, and melt it for 30 seconds. It is hot and we stick the pills in it and them form the pill together. The candy hardens and then Nick takes it. He thinks it is candy, but he also knows the effects of it. He does ask sometimes, 'What am I taking this time, chemo, cranky medicine or pain medicine? We always try and tell him exactly what he is taking, so he knows how he feels. We have learned from the beginning to be honest with him and it works in both ways. He knows what is going on, but he is also only 5 years old and should not have to understand all of his treatment.
Which brings me to today. He woke up this morning feeling really good. After 2 bowls of tostitos and a bagel he complained of back pain. I immediately gave him some Tylenol with codeine, trying to get a head of his pain. Colby was on a play date (thank you, Darcy & Jim) and we decided to take Nick & Megan (cousin) to Dave & Busters. I gave him another Tylenol w/codeine before we left but after 2 hours he was ready to go home. The pain increased and we ended giving him a full morphine pill. It is frustrating because we are scared of the pain medicine and giving him to much but it also stinks to see him in pain. We have done a better job of just giving him the whole pill instead of the recommended half pill. It is not fair to see Nick go through so much pain and try to play as well as he does. Right before bed tonight Colby & Megan decided to play Candyland and Nick actually got off the couch and played with them. He won the game. (no cheating either). You can listen to him breath heavy and trying to get through this. The boys and Megan are all sleeping in Colby's room, but Nick is still having a hard time.
I know tomorrow will be a better day, it is just the minutes and hours that pass by and waiting for him to feel better. This is the true feeling in a day of a child in pain.
The memories of these days is that Nick had fun, won some tickets and came home with some prizes, with a smile. Take Care Karen