Have you ever thought about what legacy you will leave for your loved ones when you’re gone? Elena Desserich, a 6-year-old girl who died from pediatric brain cancer, left beautiful yet heartbreaking reminders of her love—memories that would live on in the hearts of her family and indeed people all around the world.
Elena’s parents, Keith and Brooke Desserich, of Ohio, were fearful to think that their beautiful, hopeful little girl might have known that she had only a few months to live. But it seemed this sunny, adorable 6-year-old had prepared for her own death after being diagnosed with deadly cancer, and she was so sweet as to think of comforting her family after she was gone.
Today is not a day I care to remember, but I will forever be grateful for our time with our daughter. Her and her sister have taught me everything about life and living.
Elena was a perfectly healthy little girl before she was diagnosed with brain cancer shortly before she turned 6. One day, she seemed a bit different from her usual self. “She started to slightly slur her words and had issues walking that were unnoticed by everyone other than her parents,” Elena’s father, Keith, told Mirror Online.
Two days later, she was taken to her pediatrician, who quickly sent her to the hospital, “this time requesting directly for more investigation,” Keith said. “Four hours later, and after an MRI, a doctor entered her room crying,” he recalled.
The heartbroken parents were told their little girl had diffuse intrinsic pontine glioma (DIPG), a rare form of brain cancer, which still has no cure. “They told us that she had about 135 days to live,” said Keith. “Within three days we sought out new trials and had discussions with doctors who told us this was the type of cancer they were ‘scared’ of,” he added.
Doctors told them that Elena had less than five months to live, yet the little girl defied doctors’ expectations, living for 255 days after being diagnosed. She passed away on Aug. 11, 2007, four months prior her 7th birthday.
“After she lost her battle, slowly we started to put our lives and our house together. We found the first few notes and thought we’d forgotten about them,” said her dad. It transpired Elena, who loved to draw, had secretly written hundreds of notes on Post-it notes, scrap paper, and pink hearts Brooke cut out for her from printer paper.
Her parents found the heartbreaking notes hidden around the home.
These notes, which Elena addressed to her parents, little sister Grace, grandparents, and great-aunt’s dog, were found hidden all over her family’s house. “We were finding them in our briefcases, we were finding them in our books, we were finding them in our dresser drawers, we started finding them in Christmas ornament bags,” Keith told Today back in 2009.
Keith and Brooke might never know what Elena’s thoughts were during her final days, yet they might get some clue from what she left behind for her loved ones to remember her by. “Only after discovering many notes, and receiving a call from my mother, telling us she’d found a note in Elena’s dresser at her house, did we finally understand what Elena intended,” Keith said.
Keith recounted what his daughter wrote and drew in the notes: “Most of her notes said ‘I love you Mom, Dad, and Grace’. Other notes said: ‘Grace, Go, Go.’” He continued: “A note was even addressed to me that read: ‘I’m sorry I’m sick.’ They were accompanied by drawings of hearts or drawings of our family.”
Fearing that his then-3-year-old daughter, Grace, would not remember much of anything of her big sister when she grew up, Keith also kept a journal documenting Elena’s last days. “We believe Elena was doing for us what we were doing for Grace,” said Keith. “At times, she would see me writing and I would explain that I was writing notes to Grace to tell her about the two of them.”
The journal, which Keith kept during Elena’s final days as a remembrance for Grace, was shared online for other family members, but eventually, it became a public blog. After Elena passed away, numerous people requested that the couple publish their daughter’s heartbreaking journey in the form of a book.
In 2009, excerpts from the journal, as well as Elena’s many notes, were re-published by HarperCollins in the book Notes Left Behind, with proceeds going towards the charity The Cure Starts Now, which was founded by Elena’s parents. The book became a New York Times bestseller.
Ten years after Elena’s passing, Keith and Brooke still keep one last note from their daughter in each of their briefcases, which they’ll never open. “I know there’s something very special in that note — but there’s some sort of comfort that it will never come to an end,” Brooke said.
“She is still very much a part of our family, with her picture and her drawings still hanging on our walls and through the stories that Elena invented for Grace that we now read to Nina,” said the dad. Keith and Brooke welcomed another daughter, Nina, in 2014.
Without a shadow of a doubt, the Desserichs will keep Elena close to their hearts for eternity.