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July 7, 2019

My ependymoma disease is relentless.  Just had my 19th anniversary since my first brain surgery.  But... it's back!  Literally in my spine in multiple spots even after proton beam radiation therapy.  At the end of Cycle 2- chemotherapy combination of lapatinib (originally for metastatic breast cancer) and Temodar.  Not sure how feasible this long-term treatment will be from a delivery and side effects perspective.  Fingers and toes crossed!  So far a horrible rash and stomach problems have been challenging.  Taking the medication itself is a chore-  and it has a horrible taste.

Onward!  Wish things didn't seem so bleak.  A summertime shout-out to all my special friends.  Feeling blessed and grateful.