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.

Wednesday, December 9, 2009

Tough Time with Steroids this week

Hello,
We had a great weekend. We were able to buy our Christmas tree on Thursday and then decorated the tree on Saturday. Nick earned his first Karate belt (yellow striped) on Friday night, along with Colby (purple striped). They were both very excited and we are so proud of them. I took Nick to clinic on Monday. It was uneventful and long this time. Nick received his Methotraxate and Vincristine. His counts were all normal except for his WBC: 3.6, it is still low. He started his steroids this week and so far it has been challenging. On Tuesday, Greg & I decided to take the day off and go Christmas shopping. I think Nick really wanted to come with us and he had a hard time at school and daycare. The school and daycare both worked really hard in keeping Nick and making him feel comfortable, but by mid-afternoon he had enough. We cut our shopping trip early and picked him & Colby up. Today was no different. Since I am working from home today, I ended up picking Nick up at school.
As a parent it is hard to watch your child be 'knocked down' again and then a week later, he is back to himself. This gets repeated every 3 weeks. It is a tireless process for us but one we know we must do. Nick cried for about an hour last night because we were watching the local channel telethon. Each class from the elementary schools sang songs. Colby's class was on TV and we were waiting for his class to come up. Nick was getting so upset and I think it was because he was sick on the day of taping and he was not on TV. These are just things we deal with and it has become a part of our life, Nick misses the things he likes to do, Colby gets to do them and Nick gets upset. It really hurts to see Nick miss special events, as he told us, he has missed 2 special events at school so far.
We are really trying to work with Nick and trying to find ways that will make him feel comfortable at school and daycare, so he can stay. Tomorrow we are going to bring in a small blanket for the classroom and when he feels like he needs a break, he can lay down. He is sleeping now. This Friday the boys have their Prospect Hill Concert and we are looking forward to the performance. It will be our third year going. Last year, Nick was going through radiation, hair loss and not a lot of energy, but he insisted on being in the performance. We have come along way in only a year and hopefully we adjust on steroids week and keep Nick going strong. Take care, Karen