Saturday, July 16, 2011

Neuropsychological screening results

On Monday we got the preliminary results of Kol's neuropsych screening. We will be getting a much more complete, written report in the next couple of weeks, broken down into specific areas, with percentiles and specific recommendations. Overall, especially considering what Kol's brain has been through, the results were very promising. However, we got a glimpse of what might have been. I find that I am again grieving the loss of "what would have been" had Kol not had the tumour.

I don't remember what the actual terminology was - but, basically, Kol has an uneven profile. An uneven profile is not uncommon among those with brain injuries. His weaknesses are what one would expect to see in someone who has suffered injury to the frontal areas of the brain. From what I understand, a typical profile would show relatively consistent results throughout the different sub-tests. There would still be some obvious pattern of strengths and weaknesses, but if one score was in the "average" or "at-risk" range, then generally the other scores would be in the same range. Kol scored in the superior range on at least one of the tests - the one that is sometimes used as a predictor of IQ (if for some reason a full IQ test is not administered) and at least one of his scores was in the at-risk range. Some were average. The best news is that none of the scores were low enough to show impaired functioning - which is amazing. The sad part is that without the tumour, surgery, radiation, and chemo there is a very good chance that Kol would have scored in the superior, or high average range in everything.

It takes about a year for the brain to heal from trauma, and there will be gains throughout the next few months as his brain heals and creates new circuits. We just don't know how big the gains will be, or in what areas. Kol will go back for a more thorough assessment sometime next spring, at least a year after his last chemo treatment.

We went into Kol's surgery knowing that it could result in brain damage. I knew then that it didn't matter, that we could deal with anything, as long as he survived. I have to admit that I am somewhat disappointed by the results of this screening. I had hoped (maybe irrationally?) that the tests would show that he didn't have any damage. I have always suspected that Kol was extra smart, and it's disheartening to have proof of that fact when it's gone. However, that said, it's wonderful that I can worry about how this will affect his future. It means he has one.

Thursday, July 7, 2011

MRI results

Finally got the MRI results today, and they are promising. The doctor couldn't say for sure, but the nodule may be smaller, perhaps as small as 5mm by 5mm (the last MRI showed it around 10mm by 5mm). Again, there is no way to tell whether it is tumor or scar tissue, but the doctor mentioned that it didn't appear to take up any of the contrast - so if it is tumor, it's at least not active. So, the worst we can take away from these results is "no change", which isn't bad news at all.

I don't think we realized just how much we've been holding our breath over the past couple weeks while waiting for these results. The relief is now beginning to wash over us, and it feels good. Thank you all for your prayers and encouragement.

In other news, we just got a new appointment to get Kol's neuropsych screening results next Monday (July 11), so we're looking forward to that - and there's much less suspense and anxiety connected with those results!

Friday, July 1, 2011

Lack of happenings

It's been over 10 days since Kol's MRI, and we still haven't heard anything from the cancer center. This is the longest we've had to wait for MRI results. On the one hand, it's making us a bit nervous - the mind starts to wander into "what could be wrong?" territory. On the other hand, there is the "work to rule" labour situation going on at the cancer center right now, and combined with people beginning summer vacations, etc. it may simply be taking longer to get paperwork processed, etc. Hopefully we'll hear something early next week. Once again, we have an opportunity to work on patience - this seems to be a recurring theme in our lives. :-) Thanks again for your prayers.