Skip to main content


Showing posts from September, 2023

Les's Journey: Navigating Cerebellar Atrophy and Embracing Hope

Hello family and friends, It has been a very long time since I've posted an update. I'm not one to post online much, so you can assume that "no news is good news" in our family. Les has been plugging away since the last update having an excellent life for the most part. He still has a great life, but his mobility has declined over the past year and we have been trying to figure out why. We had an appointment yesterday and they offered a hypothesis for what might be causing the problem. In comparing MRI images over the last two decades, it looks like Les is experiencing something called "cerebellar atrophy". This can be a delayed side effect of the high doses of radiation that he received when he was 4 years old. He actually received an extra radiation boost directly toward the cerebellum because that is where the tumor had been located.  The symptoms that Les is experiencing are balance issues, delayed eye movements (nystagmus - this is intermittent)