Update:

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.

Friday, August 13, 2010

Just a quick update today. Yesterday, the boys, Joey and Megan went to Newport to set sail on a sailboat. The program 'sail away' was sponsored by Hasbro Children's Hospital. They all had a great time but were also scared as the sail boat sailed further out to sea. Aunt Amy and Tara (our wonderful sitter for the summer) accompanined the kids.

Click on this article. I can definitely relate to the entire piece. As we start to approach our date, there are still numerous questions that go through my mind. To think back over the past 2 years and see everything Nick has gone through and then wonder.... what will come next. There is always the looming words 'side effects' that come to my mind. We can not react to anything until we see it. Greg & I both believe we see some changes in Nick. The innocence was taken from him the day he was diagnosed and now he knows more at the age of 6 than most of us. He helps the nurses attach and unattach his tubes from his port and helps insert his blood into the tubes for the lab. The steroids really do a number on his attitude and feelings. We will continue our journey with the positive attitude and adjust how we see fit. Karen

Tuesday, August 10, 2010

Clinic

Hello,
We are all well here. Nick is feeling much better and back to himself this week. On the way into clinic today Nick asked me when he was going to finished getting his medicine. I told we are scheduled to be finished in November and then he said: "So I do not have to go to clinic after that". I told, no, we will still go for updates and see our favorite nurses, right? He said: "Yeah, I will miss them if I do not see them." It is amazing how the people at clinic have become like family to us or maybe our security blanket is a better way to put it. So, yes, I have stated Nick's scheduled end date above but Greg & I do not really look that far out. The thought of it is exciting but scary at the same time. We are not ready to take the step into 'Life after Cancer yet', which is okay as long as Nick is doing well.

Everything went well with clinic. Counts are good:
WBC: 3.3
RBC: 10.0
APC: 2,600

He received his methotrexate and will start another cycle next week. I think I am organized with Nick's schedule but I just learned today that I am not. I write down the start of his cycyle's and when we expect his LP (spinal) to be performed. Well, I just found out I missed a week in his cycle and had to re-do my calendar. (No big deal, right). Well, it turns out that we will now be going on Nick's Make A Wish Trip at the start of his cycle and not at the end of it. We know how the start of it goes and how Nick feels by the end of the week. I can not believe I did this. We will still make the best of it and have a blast. It is just a bump we'll get over. Karen