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.
3 comments:
I am so happy to read that you have reached the end of treatment and fully understand how hard it is...we are not there yet but in some ways I'm nervous about it and don't know why.
I think it is time for you all to celebrate...yes, it will still be hard at times, but you guys did it!!! A close friend whose son also had T-Cell ALL actually became very sick at the end of all the treatment...just from nervous exhaustion.
I hope you can enjoy these good times....please keep blogging if you can...you are a t a stage I know nothing about and would love to see how you all do.
Hugs,
Katy
Karen and Greg, You both know how much we love you and the boys. We definitely see a remarkable difference in Nick. He is back to his lovable self. Those chemicals that were going into his little body did a number on him. I can even see a change in Colby - he seems more positive in his everyday life. Of course, I really only see him once a week - not every day. We really love all of our grandchildren and great-grandchildren. We are so blessed to have a wonderful family that gets along with each other.
Give a kiss to our boys for us.
Love, Nana and Papa Charlie
Thank you so much for responding to my rant...I'm having a bad day so I won't go on...it will pass, as you know. You linked to my practice blog but the full story of Sammy is at www.supermansammyz.blogspot.com
I am sure you are done with cancer stuff so I FULLY understand if you don't read it...I often wish I could get away from being Cancer mom! I may have a couple of questions about ANC and neurological tests soon.
hugs,
Katy
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