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.

Thursday, January 7, 2010

Glad steroids are over

I feel like a broken record at times with his steroids but they really do a number on him, mentally and physically. He ate a lot this time around. I think he had 2 cans of soup at dinner the past 2 nights and was still hungry. He has complained of some back pain and definitely had stomach aches this week. He had a very rough day at school on Tuesday and the nurse called to say he was crying because he was in pain. Greg ended up picking him up early and his mood changed as soon as he got home. I think he just really feels more comfortable at home during steroid week and does not want to be at school or daycare. It's tough to have patience during the steroid week. You try everything to calm him down when he starts to get upset and sometimes it just does not work.
Yesterday was clinic day and Greg brought Colby with him. Colby has not been to clinic in a while because of the 'mask' policy, but they have now lifted it. Everything went fine and Nick's counts are VERY high. This is very typical coming off of a steroid week, his counts usually go up. We expect them to go back down next week, after he finishes his 2wks of 6MP. After clinic, the boys headed over to Dave&Busters for some play time. They all had fun and Nick was in bed early last night.

WBC: 10.4
RBC: 11.3
APC: 7,100

I posted some new pictures. They are from Oct-Dec. of 2009. You will our friends, family and the kids in them. I know they are hard to see because the box is so small and I do not know of way to make it bigger. I'll have to try and work on it. Take Care, Karen

Monday, January 4, 2010

Happy New Year & Spinal Tap is clear

The good news was just confirmed and Nick had 0 blasts in his spine. His spinal tap last Thursday was much different from the past ones he has had. The procedure is the same but this time we were able to be with Nick the whole time. The clinic usually uses the 'procedure' room in the OR at the hospital. The room is very small and overwhelming with machines, people and everything constantly beeping. Nick gets really scared going into the room and I hold him while he falls asleep and then I have to leave. This time around his spinal was actually done in the PICU recovery room. I held him while he fell asleep and then Greg & I stood back while the doctor performed the spinal. It was very interesting to see and watching the spinal fluid drip and seeing how clear it was, made us feel better. The doctor talked us the whole way through and Nick actually woke up happy and hungry.
We did lots of day trips this Holiday break, up until Thursday. We also had many firsts this week:
1. First sleep over with Michael at our house
2. First time the boys have ice skated
Colby did a great job and really enjoyed it. Nick was afraid of falling but still tried. Each of boys used 2 milk crates tied together for balance. Nick enjoyed sitting on his crates and getting rides around the rink. Thanks to Amy and Jen for helping us out
3. First time Colby & Tom stayed up until midnight and watched the ball drop
Nick was disappointed he did not make it this year but we told him next year he can try again

Today is back to school for the kids and back to work for Greg & I. We will be getting back into the routine and Nick will end his steroids tomorrow. He has been emotional and we pick the battles with him that we feel necessary. He has been craving apples and broccoli this time. Go figure, I keep running out of broccoli. His hair is still falling out and we did talk to the doctors about it last week and it is just part of the treatment. We met another family there who is going through our same treatment and they mentioned the same thing with their daughter. Her hair was growing back and then all of sudden it just started to fall out again.
Hopefully I can post some new pictures this week and share with you our Holiday break.
Take care, Karen