Diagnosed with terminal cancer, 6-year-old Elena Desserich’s body was slowly failing her. She was gradually robbed of her speech, her mobility, her youthful independence. But even as the muscles in her tongue betrayed her, stubborn and unrelenting as she was, she found a way to still speak to her family after she died.
Brooke and Keith Desserich of Cincinnati, Ohio had two girls named Grace and Elena. Elena, the eldest, had striking blue eyes and pudgy cheeks, but her girlish appearance contradicted her true nature.
“Elena was wise beyond her years,” Keith told the Mirror.
A precocious child, the only thing better to her than an art class was a trip to the library. She wanted to be a teacher and a mother. Her parents remembered her reaching out to others, distressed children and adults alike, to give them even an inch of comfort. To this day, she still does that for her family.
In the space of 48 hours, the Desserich family crumbled.
One day, Elena was taken to the emergency room because she started slurring her words and had issues walking. Two days later, after an MRI at a local hospital, the Desseriches sat in a hospital room, waiting. Four hours after the MRI, a doctor walked into the room, her face dripping with tears.
Elena had been diagnosed with DIPG, a rare and inoperable brain tumor. It had snaked inside the walls of her brain stem, leaving her with a life expectancy of just a few months.
Her parents were devastated.
“That’s still not enough time to see my baby’s driving lessons, first date, wedding or children,” they wrote in their memoir Notes Left Behind.
They had to spend their time right—they had too little to waste. So the Desseriches decided that Elena and Grace would never know that Elena was dying, telling them that there was a “bump” on Elena’s head, so they’d be shielded from the inevitable outcome.
All of the family’s energy was channeled into making Elena oblivious and happy. Everything else in their lives was suspended; they paused their house renovations, they stayed by her bedside until daylight crept in the hospital room window, trying to understand the incoherent words her mouth clumsily attempted to form. They squeezed every last second out of her days, like a washcloth wrung dry.
A list of her wishes was assembled too. Keith remembered Elena, struggling to speak because of her tumor, drawing pictures to communicate her requests.
She wanted to go to the “little restaurant,” a place known for its chili, just a mile from their house. She wanted a ride in a horse-drawn carriage, take a trip to the Eiffel Tower, eat a favorite meal of spaghetti and cheese. Once, she even asked to go to the “street of dresses,” which her father recognized as the wedding dress district in their town. Keith used to drive his girls down that street, telling them to plan ahead and choose their dresses now, back when he believed that the time they had left together was close to infinite.
He knew better now.
Elena held on for eight months after her diagnosis, but in August 2007, she succumbed to the disease. She took with her sweet memories like her sugary kisses at the breakfast table when she and Grace surrounded their parents, lips puckered and mouths covered with chocolatey cereal.
Brooke and Keith tried, slowly, to untangle themselves from their grief. They restarted renovations, hoping that by fixing their home, they’d pull together the pieces of their lives too.
While cleaning one day, the Desseriches discovered a note from Elena wedged in her bookcase. They didn’t think much of it, instead remembering how even while the tumor claimed more and more of her abilities, she continued to write and draw as much as possible. Her note was a bittersweet reminder of that.
“It just felt like a little hug from her,” Brooke told Today, “like she was telling us that she was looking over us, even though she wasn’t with us.”
It wasn’t until Elena’s grandmother called, saying that she’d found a note in her house, did the Desseriches realize Elena’s true intentions.
The notes were everywhere–tucked inside briefcases, buried in socks, pressed between the pages of a book. Wherever they cropped up, memories of Elena flooded back.
“It’s wonderful for us to see the notes, and they’re very hard for us to see the notes, but you hope they never end,” Keith told Today. “And we hope that years and years down the road that we’re still finding [them].”
Messages from Elena were scrawled onto roughly cut heart-shaped pieces of paper. One read “I love you, Mom Dad Grace” with a stick-figure drawing of their family on the side. Others were sheets of paper filled with hand-drawn hearts and scribbles. Some were addressed to her favorite dog Sally, who was her aunt’s pet. The Desseriches say that it was Elena’s way of recording her appreciation and affection, while reminding others that she loved them.
“We believe that Elena was simply doing this for us,” Keith told the Mirror.
But as her family found more notes, a troubling idea emerged. The wise little girl, the one who comforted those in pain and worried about her sister more than herself even when she was sick, might’ve been wiser than she let on. Perhaps, even, she knew she was dying.
The Desseriches now believe Elena had been aware that she was sick. That truth became inescapable. Keith remembered the process of watching his daughter sink into silence and paralysis.
“[The tumor] robs a child of one or two things a day–rolling of the tongue, the ability to move a leg or write,” he told ABC News. “Each day, you wake and look at the body and wonder what you’re losing.”
Each day, Elena must have wondered the same. While her parents fussed about her, reading with her into the early morning hours, showering her with gifts, doing whatever necessary to protect her from knowing her fate, her scribbled messages may have been her small confession: that she knew, and that it was all right.
“I think the notes were her way of telling us that everything would be okay,” Brooke told DailyMail.
In the end, these notes were all they had left. So the Desseriches preserved Elena’s memory through her messages, their journals, and intimate details about her—how soft her cheeks were, how vivaciously her eyes glowed, how her smile warmed them through the bitterest of chills.
The artwork of Elena has also been saved. In the Cincinnati Art Museum, a drawing of hers titled “I Love You” hung up in the museum for a week in 2007, right next to Picasso, her favorite artist. Blossoming with vibrant hues of orange and yellow in the center, rays of blue and purple stretched out to the corners of her paper. In uneven, stocky letters, “Elena” was scrawled at the bottom.
Her parents still each keep one of Elena’s notes, sealed, in their briefcases. Grace has one too. They don’t ever open them, for fear that one day, they may find Elena’s last message to them. They have three large boxes filled with her notes at home, hundreds of them to pour over, but for some peace of mind, they still carry these around. They survive with the knowledge that, no matter what, there will always be one last word to read from Elena.