March 22nd, 2005
Neuropsych Readout
Today, we spent an hour with a neuropsychologist discussing Spencer’s development status, and possible long term effects of chemotherapy. As beneficial as chemotherapy is, it can have long term neurological effects that slow brain development. For the ALL standard risk protocol, the exposure to the harshest of chemotherapy medications is limited, but high enough to risk some effects. Ideally, we would have a baseline neuropsych examination before starting chemotherapy. Realistically, the induction and consolidation chemotherapy is too intense to have a neuropsych test until later and there is a long wait to get an appointment with a neuropsychologist. We managed to get an appointment for Spencer in early March for testing. That was early enough in his delayed intensification that he wasn’t having serious side effects. His energy levels were low enough, and the testing intense enough, that we spread the testing over two days.
The possibility of learning disorders in the future probably scares me even more than relapse, possibly even more than the possibility that Spencer could die. He is so bright in so many ways it pains me to think he could lose some of that. Some of the hardest emails for me to read on my cancer support group are the ones from parents having trouble with getting schools to acknowledge, and compensate for, learning disorders resulting from chemotherapy. Spencer is almost frighteningly like me, except smarter. This is scary looking forward because I know it’s only time until he knows enough to take advantage of that intelligence, and it’s even scarier that he might lose that opportunity because of chemotherapy.
The readout didn’t really have any surprises. Spencer is smart. Developmentally, he’s a little behind in attention, self-regulation, gross motor skills. He’s about average in fine motor skills, which was a mild surprise – I thought he’d be below average since he seems to share my grace and skill with drawing and handwriting. In everything else he is above average, spectacularly in some areas. A significant caveat comes with this baseline. The tests compare all five year olds and many kids in the sample pool have had no school or any focused learning. Due to that, there is a lot of change in the 5-7 year range as smart kids who had no exposure to learning catch up.
We spent a lot of the appointment talking about ways to deal with our spirited child and the areas where Spencer is below average. The neuropsychologist summarized the baseline by saying “He has a great cushion. Worst case, if he has major developmental problems from the chemotherapy, he’ll still be average.” Somehow, that didn’t really ease my fears much, but for now it will have to do.
Sometime in the next 1-3 years, sooner if we notice any problems otherwise after chemotherapy is completed, we’ll do repeat testing and then one or two more times again in the more distant future.
