Kevin’s Story

Site created on November 9, 2019

Welcome to Kevin’s CaringBridge website. I am using it to keep family and friends updated in one place on Kevin’s journey living with and enduring brain cancer. Our family appreciates your support and words of hope and encouragement. Thank you for visiting!

Newest Update

Journal entry by heather prentice

This is something I said early and often.  It was 22 Dec 2019, the first day of our winter work break.  We were dividing and conquering our Christmas shopping errands when I got a call from Kevin saying he was having one of those episodes but this time it wasn't going away.  One of those episodes was a strange feeling like an adrenaline rush that had been happening periodically for about 6 months. It would come out of nowhere and last 5-10 minutes.  His GP had been trying to rule out a heart condition/stress/anxiety.  

I said stay there I'll come to you but with the holiday traffic the trip from the Mall to CVS off 37 would take nearly 30 minutes so I figured most likely he would be ok by the time I arrived.

When that wasn't the case and it worsened with numbness in his left arm I decided a trip to the ER to rule out something serious.  I never would have imagined what would transpire over the next 24 hours... 4 weeks...

While being worked up for panic attack in the ER, Kevin had a tonic clonic seizure.  Scans would reveal a lesion on the brain and Kevin would endure a week long hospitalization at Community South while a variety of clinicians struggled to confirm diagnosis. They argued over possibilities...infection.... inflammation ... just messed up cells from when he was born....  And over and over I kept saying and thinking what the Hell is happening!?!

Exactly 4 weeks later working through a team at IU he had a diagnosis of an inoperable brain tumor.  Precisely, a diffuse astrocytoma WHO Grade II in the right temporal lobe including medulla, hippocampus, and temporal operculum.  Later gene sequencing would provide further details including it was IDH wildtype, non methylating, with EGFR and FANCA mutations.   It was probably there for years, maybe 10 years and was possibly changing.

Things were escalating quickly.
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