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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), and uncoordinated movements and gait.

We are grateful that Les is NOT experiencing other potential side effects including swallowing issues or vertigo and nausea.

Since we now have a name, we can now work toward making it better. There isn't a "cure" but we can hope that with some specific neuro-rehab therapies we can positively affect his life.

Here's a praise report - a quick Google search, while sitting in the exam room, identified a "Neurological Rehabilitation" facility within 11 minutes of our house. So, needless to say, we are going to check that one out first.

There are so many people who love and care about Les that it would be hard to reach out to everyone to keep them updated. This blog will continue to be my outlet to keep everyone informed. I know it is a bit outdated in its layout, and maybe I'll be able to improve that, but "function over fashion" is my motto right now.

Thank you for your prayers. We value them!

Here are some images of Les's brain to show what cerebellar atrophy looks like.