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, June 28, 2011

The Results are In

I know I have not posted in a while. I think about it everytime but then something else comes up like hanging with the kids or playing outside, so I think my excuses are pretty good. Greg & I had our appt. today with Dr. Selke -- Pediactirc Neuropsychologist to receive Nick's results on his testing.
Many people have asked why is this test being done and what will we get out of it. When Nick was treated for Leukemia he received radiation (8 days of it) and high dose chemo. There are many side effects from both which can lead to brain deficiencies, such as cognitive skills, comprehension, fatigue, etc.... Nick was in testing for a full day and they were able to complete the whole series of tests. I will first start by saying Nicholas is VERY smart and we are so proud of him. His total IQ number did drop from 124 to 113. Anybody who knows about IQ testing is aware that there are varying degrees in the actual measure (ie:number) that each test uses. His testing is in the range from 1-145. We are satisfied with the results and the areas that Greg & I thought he would need help, did show up on his tests. Our concerns were correct and we still have to accept the fact that there is side effects from everything his body/brain went through. As the doctor states... we saved our child by treating him with chemo and radiation, so we take the side effects and work through them. Nick is showing the 'common' signs from radiation. Here is the breakdown to make it more clear:
- 8 hours of testing -- the dr. uses activities to work on different areas of the brain
- During testing Nick was fatigue by 11am and in the early afternoon by 3pm. The tests going on during this time was not 100% dx due to fatigue
- Nick did drop or show slow response to comprehension & motor skills

The Dr. said he is working on a study where fatigue actually continues through during his delvelopment phase of life. Greg & I always thought Nick would be back to his original energy level and now studies are proving that is not the case. While we see improvement in his energy, he is still not there yet and we do not know if ever will be. He may stay awake all day and play but activities such as baseball can wear him out quickly. We have seen this on the baseball field. He takes a few swings and then he complains he is tired....Of course we try to encourage him and keep telling him to try but in reality his brain/motor skils are slow and tired. Just something we, as parents, need to watch as time goes by.

The big question I asked the Dr. was if Nick would ever re-gain or improve on these skills in which he has shown a decrease in. The Dr. explained it to me like this: Your brain cells (white mass growing around your nerves) grow until about the mid20's and if a normal child is at 100% motor skills and then becomes sick (like Nick), those cells could drop down to about 75%, with radiation killing the 25%. He will never get back to 100% but he can maintain or drop where he is today. So our goal is to continue to challenge Nick and focus on these areas to keep his level of 'smartness' up.

I will post more on this next week when I receive the actual paperwork. The Dr. had some updating to do on his medication sheet of the report and will be sending it out to us. The meeting was very overwhelming for Greg & I to learn just the terminology and then apply it to the exact behavior going on in his brain/everday functions. The testing Nick endured was very draining for him but it is so important to work each part of the brain. The Dr. is not instructed to tell us how to handle the coming years but we have a better idea what we need to do as parents. More details on next blog. Sorry if this is confusing reading about it... I am trying to process everything that was said and also dissect what is the priorities for keeping Nick on track.

On a very happy note: Thomas turns 3 on July 3rd. He has grown up so much and barely looks like our 'baby' anymore. The years pasted by so quickly for us with Tom and missing him during Nick's treatment. I think he has become more independent than the other 2 because of this. He is our little 'madman' in the house. Mom & Dad love you very much Thomas!!!!! We are celebrating this year with a big Mickey Mouse Cake.

1 comment:

JackSamMum said...

Hugs to you all. Your outlook on all this helps me...I am so afraid of all the results of treatment....Sam has yet to have his IQ done but his muscles and nerves are damaged. I did not realize how cancer in kids changes their lives forever until Sam was diagnosed.
You are so right about how we are so focused on treatment that the siblings kind of grow up before our eyes and we don't always notice...juggling too much I guess!
Katy x