'Notes Left Behind' Dad Says It's All About The Smaller Moments
When Keith and Brooke Desserich learned their daughter Elena had pediatric brain cancer, they were also told she had only 135 days to live. She made it to 256.
Nearly every day has been recorded by the Desserichs in "Notes Left Behind," a book first published by the family at a small press and sold as a fund-raiser.
Now the book has been republished, this time by publishing giant Harper Collins, and is filled with greater detail. A journal of Elena's last days -- written for her younger sister, Gracie -- the book brings two parents' love for their child from the abstract, unconditional love we all feel, to the simple joy of reading bedtime stories and singing lullabies.
Named for the secret love letters Elena left scattered throughout the Desserich's Ohio home, reminding them she loved "Mom, Dad, Gracie," "Notes Left Behind" is its own love letter. And with profits from the sale of the book going to The Cure Starts Now, a foundation to fund pediatric brain cancer research, they're sharing the love with future generations.
ParentDish spoke with Keith Desserich about his family's decision to go public with their story and the goal of revolutionizing cancer research in America.
ParentDish: "Notes Left Behind" was one of those books you hate to read, not because it's bad - it was fantastic - but because you know what is going to happen in the end. But it was written with a lot of warmth and humor. Was it hard to keep that humor?
Keith Desserich: I don't think think it was. The position we were in -- we have a different perspective. When anyone goes through that, you kind of pick up on the smaller moments. That's really what the point of the book was. We wanted to be able to pass on memories, pass on reflections, pass on not only the struggle that Elena had to her younger sister, but we also wanted to pass on some of the funny things, the things that, frankly, we would want her to remember about her sister.
PD: This book was originally written for Gracie; when did you decide to put it online?
KD: This is the one book we never intended to publish. We put it up online not for the benefit of everybody else reading it, but because we had to make an hour of phone calls to our extended family every single night. In an attempt to alleviate that, my sister suggested we put the contents of this journal up online so our family could read it. The simple concept was put it up at Desserich.org because no one could spell our name in the first place, so the quickest way to make sure only family could read it was to put it up on a Web site that was our family's name. Obviously that strategy didn't work too well. We had a lot of people reading it and never really realized it until it crashed our computers twice.
PD: Reading it, the first reaction I had was to hug my daughter. Is that the reaction you've gotten from parents?
KD: We've gotten two reactions. One is that they really learned to spend time with their children and really cherish their children and see life through a different perspective and appreciate life for what it was. The second thing we've heard from people is it taught them the power of smaller moments. You look back on life and believe you're going to remember the day you got married, the day your son or daughter was born, and those seem like milestones when they happen, and I think they always will be. But I think we also remember even more powerfully the smaller moments in life. I look back on it and I can't tell you necessarily how Elena felt in my arms, either of the girls, but I can tell you the feeling of Lucky Charms on my cheek when they would give me cereal kisses ... I guess in the end your life isn't made so much in milestones as it is in minutes.
PD: Tell us a little bit about The Cure Starts Now.
KD: You'll see somewhere in the beginning of March there's a journal entry where we write about how late one night, like any other father, I was up reading the pages of Clinical Oncology. You're hoping to find that one thing that everyone missed, hoping to cure your daughter. Going through it, I'm noticing there are a couple of traits about pediatric brain cancer which make me think that the cure for all cancer might be found within pediatric brain cancer ... I called up Elena's doctor and said, "I'm reading this, it's 10 o'clock at night, please tell me I'm wrong and I'll go back to bed." And he says, "No, you're 100 percent right on this. The cure for cancer could be found in pediatric brain cancer and many oncologists believe that." I asked him why hadn't we heard this before, and he said it's difficult to say that the research should be in children first instead of adults.
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PD: And the foundation?
KD: A lot of people read that and started coming to us and saying really that represents a whole new strategy in cancer research. Instead of curing it by the numbers and saying this one has the most number diagnoses and we're going to allocate the most dollars to it, at least a part of our strategy should be spent on those that we believe we can learn the most from. We're really spending almost nothing in terms of dollars and cents on those we can learn the most from ... as people started picking up on what they read in that journal, they started a cause, and that cause is The Cure Starts Now, which basically took the last line of that journal entry and took it to the next step. The community really jumped behind the cause even before Brooke and I did. There were four or five giant fund-raisers for it, and people started selling copies of Elena's I Love You print, and raised something like $20,000. They originally tried to give the money to us to cover medical expenses, and we didn't want it. We appreciated the efforts, but it just wasn't what we wanted to do with it. So we started a foundation.
PD: Is the money directed more toward doctor's research or more toward helping families?
KD: It's designed for research. We believe the best gift we can give is to focus on research. There are some elements of it where we have families come to us and say can you help us come up with funds to cover medical expenses, and we've said sure. However when we put them on our Web site, we say "Look, if you're going to donate money to this family, it goes to this family." But if people donate general dollars to The Cure Starts Now, it goes to research.
PD: Other than buying the book, what's the best way to donate?
KD: They can donate online at The Cure Starts Now. We have the unique feature in that anyone who donates directly -- rather than through a fund-raiser -- we automatically place those funds into restricted status. That means they can't be used for anything, including administrative costs. They can only be used for research. Somebody donates $100 to The Cure Starts Now, $100 of it goes toward research.
Related: Medical Conditions and Information About Cancer.
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