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Notes Left Behind: A 6-Year-Old's Story of Hope

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Losing a child has given these parents a story of inspiration that humbles and amazes us.

Notes Left Behind Elen Desserich

Lisa Sharkey: Yesterday, Keith and Brooke Desserich shared the story of their 6-year-old daughter, Elena, who succumbed to pediatric brain cancer, with the "Today" show. From the wishes she accomplished to the love letters she carefully hid for her parents to find after she was gone, their journey is one of hope and inspiration. They tell the story in their new book, Notes Left Behind, which began as a journal they kept after Elena, at 5 years old, was diagnosed and given just 165 days to live. Momlogic sat down with Keith to find out more about their incredible story.

Momlogic: Why did you and Brooke write Notes Left Behind?

Keith Desserich: Notes Left Behind was written as a way of preserving memories for Elena's younger sister, Gracie. Since Grace was only 4, we wanted her to be able to remember her sister in the years to come. With the diagnosis of 135 days of survival, we knew that every day from that moment on would be precious. So the night that we received the news, I decided to start the journal as I sat by her bedside. Over time, select entries were published to the Internet as a way of communicating with family, which ultimately became so much more.

ML: Some people have called your book a "last lecture for parents." Explain to us the lessons learned from your experience.

Keith: At its heart, this is nothing more than a letter to Gracie. Yet, even today we receive letters from people that say the book has changed the way they relate to their children. It teaches them to focus on the smaller moments of life and appreciate their children for the inspiration that they truly are. And while this is a lesson we learned the hard way, I can't think of a better legacy for Elena.

ML: How is Grace doing? One of the most poignant notes from Elena was "Gracie go go go ..." Is that her favorite one, and if not, does she have a favorite?

Keith: Gracie is truly an unsinkable spirit. In many ways, she is the one that keeps us afloat both after Elena's death and still today. Since Elena's death, Gracie almost immediately understood and helped us to cope, even pointing out sunsets and sunrises that she thought Elena painted. She obviously has her favorite notes, and still, even two years later, asks to look at the notes and books from her sister to remember her by.

ML: What do you think are the three most important things a harried, frantic parent can do today to make sure their time with their children is precious?

Keith: Part of relating to your children is acting like one. Get down on their level, make a funny face for the camera, and have fun. We often spend so much time growing old that we also act old. Learn to embrace the cereal kisses, the messes in life, the songs they like, and the passions they have. And in time you may start to grow young.

ML: How do you keep going through it all?

Keith: We find that just as Elena is our hero, so too are the other children afflicted with cancer that we meet. Every time we start to dwell on our loss, it is through our connection with other families and other children that we pull ourselves out from the depths. Often the best thing you can do to recover from grief is to find an outlet for your energy. And suddenly when you're busy helping others, you no longer have time to feel the pain within.

ML: Tell us about the charity The Cure Starts Now.

Keith: Just like the book, The Cure Starts Now Pediatric Brain Cancer Foundation was a community effort. Founded by Elena's teachers and joined by us formally after Elena's death, today it represents a revolutionary way of fighting cancer. With operations across the country and worldwide, it advocates that rather than fighting cancer according to the numbers and making small advances as we have over the past 70 years, we must now try a new strategy. A strategy where we also focus on those cancers that we can learn the most from, and in doing so, apply innovative techniques to all cancers, both pediatric and adult, that will cure cancer once and for all. These are our "home-run" cancers, and most experts believe that pediatric brain cancer is the best place to start. In the end, it is not as much about how many dollars we raise for cancer research as it is about how we spend them. And today, we might very well be spending them wrong. But sadly, this new strategy that we propose with The Cure Starts Now, society has yet to embrace. And yet it may be exactly how we should be fighting cancer and winning.

ML: What has been the most rewarding thing so far about writing this book and sharing your personal story with the world ... knowing the book has been published or will be published in more than a dozen countries?

Keith: The most rewarding part about publishing the book is knowing that parents around the world may spend more time with their children and cherish the moments they share. I also love hearing the stories -- after all, these are only ours. At each book signing or each charity event, people come to us and tell us about their children and how they now "read the biggest book on the shelf" to their son or daughter before bed. This is what makes it worthwhile.

ML: Do you still talk to Elena every day, and what do you say to her about her legacy?

Keith: I think Elena already knows about her legacy, and I don't think she is finished building it. She talks to us daily in everything we do, for now we must live two lives in the one that we have left. And so we listen -- listen to her and listen to other parents and children. All in the pursuit of a cure that Elena wants us to fulfill.

ML: I know you recently found some new notes -- can you talk about that?

Keith: It had been a while since we found the last notes hidden by Elena. Then this week, prior to the book's publication, we were cleaning out a closet of old board games so that we could put away games Gracie got for her birthday two weeks ago. In the back of the closet, under a box of colored pencils that Elena used to use, was a notebook. On the first page of the notebook was a heart with the words "I love you Mom, Dad and Gracie." It was a wonderful reminder from her, just when we needed it most.

ML: Tell us about the ice cream named for Elena, and about the support from the company who makes it.

Keith: In honor of Elena and in support of The Cure Starts Now Foundation, Graeter's Ice Cream partnered with a local family, the Grotekes, to create an entirely new flavor. Originally called "Graeter Hope Blueberry Pie," it came to be known as "Elena's Blueberry Pie Ice Cream" by everyone that came to Graeters who knew of Elena's story. And after selling out four times in a row, it now is a permanent flavor with Graeter's Ice Cream that generates $.50 for The Cure Starts Now for every pint sold.

Momlogic will give ten readers a copy of Notes Left Behind: A 6-Year-Old's Story of Hope -- click here to enter to win. Contest ends November 6 at 11:59 PM PST.

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7 comments so far | Post a comment now
angelique carganilla November 4, 2009, 5:29 PM

until now i cant stop my self from crying,after reading about elena’s story,.im so touched and deep inside my heart i know elena is watching as angel up above for the childrens who suffered on pediatric cancer.,she serves as inspiration to many parents,. all over the world..i don’t have kids yet.,but ill make sure that when i have kids ill cherish every moment with them.. see them grow,. hear there laughs and love them with all my heart,. thank you elena.

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