"NOTES LEFT BEHIND," by Brooke and Keith Desserich, William Morrow, 272 pages, $19.99 (nf)
No parent plans on burying a child. It's the most unthinkable pain possible. But in it can come hope and growth, too, as the Desserich family of Cincinnati discovered in 2007.
Elena Desserich was diagnosed with terminal brain cancer at the age of 5. Told that their daughter had just 135 days to live, her parents, Keith and Brooke Desserich, decided to write a journal for their younger daughter, Gracie, so that she would be able to know her sister long after Elena had passed.
"Notes Left Behind" is that journal. It's a daily account of not only medical tests and treatments, but also Elena's resiliency. The Desserichs truly lived one day at a time, and nothing was too small or too big to record.
Elena's cancer was "abnormal," not something seen before. For many, this term would be scary, but for her parents, it meant hope. Surely that could mean it was survivable. But as the months went on and Elena lost use of her motor functions and voice, they found themselves struggling between the desire to fight cancer at all costs and the painful choice to accept the inevitable. In the end, they chose to focus on their family and the joys of living.
From the time of her diagnosis, Elena had a list of wishes she wanted to accomplish, many of which were done with her own flair. Whether it was riding in a horse-drawn carriage, swimming with dolphins or creating a masterpiece that hung in an art museum, Elena knew what she wanted and made it happen — with a little help from those who loved her.
Elena loved her family with all her heart, and she wanted to make sure they knew it. Her solution was to hide hundreds of little notes around the house — in sock drawers, briefcases, backpacks, in between books on a shelf. The title of the book is derived from these little love missives.
"Notes Left Behind" is candid and sincere. It's also heartbreaking. Pictures of her face swollen from steroids evoke tears, as do many other moments throughout.
Elena lived for 256 days following her diagnosis, 121 days longer than doctors expected. During that time, she inspired others to live, love and find joy in the simplest of things.
Her inspiration lives on in "Notes Left Behind" and in the Cure Starts Now Foundation, a nonprofit cancer-research group to which all authors' proceeds are being donated.