Elena Desserich was five years old when her parents found out she had brain cancer. She was going to die.
They decided not to tell her so she could live the remainder of her life without fear and without sadness. Her parents made up code words for things they didn’t want her to understand. But children are smart. They understand more than we sometime give them credit for. Elena knew something was wrong.
As the disease progressed, her speech was affected and she eventually couldn’t speak. So she expressed herself through drawing and painting. She died in August 2007, nine months after she was diagnosed.
Her father, Keith Desserich, was on The Hour this evening and I caught the beginning of the story. He explained that after she was gone, they were moving some boxes around and a note fell out from between two books. It was a note from Elena. Not only did she know that something was wrong, she got to work and left literally hundreds of notes to her family, tucked away in every nook and cranny of their home. In an ABC News article, her mother Brooke said, “Each time I would read one of those notes it was like a little hug from her.”
They took her notes and her story, and made a book called Notes Left Behind. All of the profits from the book are going directly to The Cure Starts Now, an organization Keith and Brooke Desserich started to find the cure for pediatric brain cancer.
Keith describes Elena’s notes:
Brooke has her note. I have mine. They are tucked away in our briefcases; always with us, never out of reach. I found mine in the black backpack that we took to Elena’s wish trip. Brooke found her letter in the side pocket of her briefcase, where Elena had put it many months before. These are two of many letters that Elena hid for us in the last nine months of her life — some hidden between books on the bookshelf, in the corners of our dresser drawers, or between dishes in the china cabinet. Each note deliberately left professing her love for her family. They are constant reminders of her determination and her inspiration. She knew somehow that one day we would need them to continue.
It seems to me that Elena helped her parents do much more than merely continue.