Notes Left Behind

this book was sometimes hard to read, and I am not a parent. however, I felt like reading this might help a parent to appreciate the small things, the day to day things, if they are able to read this book. one part that stood out to me most was when the family went to Build a Bear, near Christmastime. the father is envious of parents who are tirelessly shopping for the upcoming holiday. he wishes he had that sometimes annoying and/or tedious task, rather than facing his daughter's battle for life. sadly, this seems to be more of a document of Elena's lasts, when at 6 years old, she should be still going through firsts.

I work around special needs children every day. Terminal ones, and those that have a lifelong struggle with complex medical issues. The one thing that always amazes me is their resiliance and bravery and just how smart they are about the whole thing. What also amazes me is the family that rallies around them, circling the wagons, and never giving up hope for a miracle, a cure, or just a good day. Notes Left Behind is a book that will take you into that exclusive world, one that you dont ever want to be privvy too, and shows you just what it is like to be a parent of a child who is given X amount of days to live, and the journey to the end of those days. Brooke and Keith Desserich have two daughters, Elena who is 5 and Grace who is 4. When Elena is diagnosed with an inoperable brain tumor after a routine hospital visit for "just" a sore throat, they decide to keep a journal for Gracie. This journal turned out to be so much more through encouragment from friends. Keith and Brooke hold nothing back from day one of diagnosis, to the last days. Its a heartbreaking look at this families worst moments, and some of their best. Elena, who is smart beyond her years, is a true spirit of bravery and joy and the resiliance of youth. Gracie is a scrapper and she is blessed with parents who held nothing back in this journal, she will one day appreciate it and thank them for having the gumption to write it. There are pictures throughout,and again the Desseriches let us into their world where you have a beautiful normal child, and by the end of it all you have one devestated by steroids, chemo, and the pressure of the tumor on her brain. Its so painful a journey, yet so important to see. I recommend this book to anyone who has had a family member lost to cancer, or anyone who needs a boost in spirit and a reminder to love your family everyday, kiss them, hug them, tickle them, and cherish every second. Elena, thank you for your time on earth little one, thank you for gift to all of us, a gift of love. thank you.

I havent even finished the book yet. I started balling from the start. It just makes me soooo sad for all the babies with cancer its horrible and we need to find a cure. It is wonderful how Brooke and Keith has shared there beautiful daughters life to promote awareness. Everyone add them to your causes on facebook and donate! God Bless! and hug your babies mine was being hyper yesterday and i was very frustrated and then I remembered Elena!

Brooke and Keith Desserich are ordinary parents faced with an extraordinary situation. Their precious 6 year old daughter, Elena, has been diagnosed with an extremely rare form of brain cancer, and is given 135 days to live. This is a day by day diary written by both parents which chronicles the last months of their child's life. After the devastating diagnosis of diffuse brain-stem glioma, the family, including younger sister Gracie, embark on a journey across the country for treatments and tests, mostly painful and prolonged with no guarantees for improvement. Written with candor and frankness, these parents write about Elena in a way that makes the reader come to know her completely. We learn how she is a pretty pink sparkly kind of princess, a determined and fiercely brave child who treads lightly when trying new things, however reluctantly, but who eventually can be persuaded to conquer any challenge with help and support from Dad, Mom and Gracie. We as readers feel the deep sense of loss as Elena's days dwindle and her prognosis isn't any better. We feel the anger and helplessness which wracks the parents all through the night. They pray for a miracle daily, one that never comes. After maxing out her lifetime limit of radiation treatments, little Elena is happy to live each moment with joy and try to battle the demon that is cancer. We are thrilled right along with her as she gazes at the Disney World attractions, we cry as she stumbles into relapse when paralysis once again takes over one side of her body. We applaude her for trying so hard to be perfectly brave, and want to reach out and cradle her as she shakes in fear with each MRI. Personal photographs of Elena, Grace and their parents are included throughout the book, and we are given an up close and sometimes horrifying look at what the disease and treatments did to the small child over the course of her radiation and chemo. We also get to see the wonderful notes and pictures that Elena lovingly gave to each member of her family, showing her heart shaped hugs and kisses whenever she had pen and paper in hand. Whether you have youngsters of your own or not, you will read this journal with the eyes of a parent, hopeful that little Elena will beat the odds. Keith encourages all of us to hug or kids a little longer and tighter tonight, and I'm already taking heed. A touching and beautiful tribute to a little angel, one I will not soon forget.

Notes Left Behind is a great read for a great cause. A very inspirational book about an amazing girl's battle with cancer.

I never knew Elena, but I have worked as a volunter and "buddy" with children with cancer, and specifically, the type of brainstem tumor Elena had, diffuse intrinsic pontine glioma (DIPG), since I was seven years old. I am now 13. This is a beautiful book and, though heartbreakingly sad, a true legacy left by a little girl to the world she lived in. Elena is gone now, and the cure or even truly effective treatment for DIPG has not been found. Please support the efforts for a cure for this and all forms of childhood cancer in any way you can. This book is terrific but I wish it had never been written because that would mean that Elena was alive and well and a happy seven year old in Cincinnati, Ohio exactly the same age I was when I met and worked my first "buddy". I KNOW she would be fighting for the cure too! Arabella Uhry