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.

Tuesday, February 15, 2011

First Clinic Visit without the Port

I know it has been since I have last updated. I think about blogging a lot but then I just do not feel like it. Nick is feeling great and working on getting back into a routine. He does have a few set backs at school and I think it is partly due to the amount of school he missed last year. He is behind in reading, so he receive tutoring for this. He really tries so hard to read books but it takes a lot of energy out of him, so we are patient and work with him when we can. He has excellent hand writing and continues to improve on his spelling words. I know the next few months will be a work in progress and trying to catch him up so he is ready for 2nd grade. Nick had a neuro-phsyc.test done before his radiation treatments back in 12/08. His results were outstanding and he way above on the 'smart' chart. I know we need to take him back for re-evaluation to see how he has changed. It could be from radiation or just the time away from school. I think I have been personally dragging my feet on making the call.
The emotional roller coaster you feel from ending treatment is very hard to describe. I see my Nick and how wonderful he is and then you feel for the ones who are not there yet. The routine of clinic is not there and you are looking to find something else. By no means am I complaining about off treatment but the emotions of the past couple years catch up to you. At least once a week (maybe a day), I think about an instance in Nick's treatment, when he was sick, healthy, inpatient, that will never go away. Last night Nick asked to sleep with me. I know it was because he had clinic yesterday and he was not happy about the blood draw from the arm. We had 4 people holding him down while he sat on my lap. I tried to explain to him to hold still and it would not hurt but he said he did not like the elastic around his arm. If this happened before he was dx, I probably would have been a wreck watching him cry and scream and so upset, but yesterday we HAD to draw blood.... We all needed to know what his counts were and how much chemo is still in his body. I am not sure if it will get better each month but the nurses are really great and strong. His counts are back to normal:
WBC: 7.8
RBC: 12.1
Plts: 314
Nurse Pat mentioned he still has chemo in his body and they could through the 'differentials' part of the test. She showed me a number and said as that drops it means the chemo is leaving his body. The next step for us is to schedule an eye appointment. The nurse mentioned that Leukemia can actually sit in the back of the eye (very rare) and be systematic to Nick so they would like him to go see an optometrist. She also mentioned that the long term steroid use can have side effects. I was surprised to hear all of this but then again, we know the word 'side effects' and we will do whatever is needed for Nick. I have attached a couple of pictures from Dec 2010... Flashes of Hope. We happened to be at clinic that day and they were there so we had our pictures taken with Nick.

PS: In 3 days South Elementary School raised $780.00 for the Pennies for Patients Program and they stil have 10 more days to go.