Nicholas finished treatment on 11/18/2010. He will continue to go for blood work for the next 3 years. He is still in remission.

Wednesday, June 2, 2010

I know it has been a week and a half since my last post. I guess no news, is good news. Nick was really good on his steroids last week. He spent most of Saturday in pain all day but was back to himself by Sunday morning. We were on top of his pain this time because Nick kept asking for the medicine. We decided to stick with the Tylenol w/codeine and avoid the morphine. We all had a great/busy long weekend. Nick started his weekend with a playdate at Brady's house. He had a lot of fun swimming and I always feel that is the best exercise for him. We ended our weekend by going to the beach on Monday with the Love family. The day was fun for the kids. We always try to load up the sunscreen on Nick, give him a hat and have him wear his T-shirt when not swimming. The beach experience is so different this year than last year. Nick did not have hair last year and always wanted to go to the beach. I know we were very nervous about going and being in the sun to long. We would leave for the beach early in the morning and be home before lunchtime. This past weekend we stayed until after 1pm. The reason Nick will always need protection on his head is because of radiation back in Dec. 08. The doctor had told us that Nick should never have his head in the sun.

I have to tell a story about Nick: On Sunday we were on our way to Auntie Lisa's house for a cookout and swim in the lake. While we were in the car Nick noticed he was bleeding on his leg. I could not look back but all I heard from him: "Mom, I am bleeding, my platelet count must be really low, I do not think I have any platelets left. I hope it stops bleeding soon." Of course I looked back immediately and it was a tiny scab he had scratched, with a little blood showing. We had a good laugh (knowing he would be fine), but it reminds us of how much Nick knows at the age of 6..... things he should not worry about.

I took Nick to clinic yesterday. His counts are really good and the first time in over a couple of months I have seen them this high:
WBC: 8.0
RBC: 10.4
APC: 5,500

The DS Update: We ended up buying Nick another DS (refurbished model) and then we found his. I found it on our kitchen counter behind the knife set, an unlikely place for it. When I asked Nick about it he said he had forgotten he put it there. He was hiding it from Tom. These are times when you just have to laugh about it and move on. Of course all the nurses at clinic were wondering if we had found it and were happy to hear he did find it. Nick's friend Alayna at clinic even made Nick a star with beads because she was sad for him. The family was at clinic yesterday and they played the whole time. I have to say Thank you to the Cote family for offering there DS to us.... very thoughtful of you all.

Nick is very comfortable with his Monday friends at clinic. We have met some really great people and while the whole journey is not fair, you know that you are not alone. Karen