Child Dying of Cancer Leaves Notes Behind

5-year-old hides notes for parents to find, inspires book, foundation for cure.

November 4, 2009, 5:16 PM

Nov. 5, 2009— -- Brooke and Keith Desserich of Cincinnati, Ohio, were told their daughter Elena had 135 days to live. She beat her diagnosis by 121 days.

But during that time, as she fought the cruelest form of pediatric brain cancer, 5-year-old Elena left a powerful legacy.

She began to hide little notes -- hidden in book shelves, CD cases, sock drawers -- for her family to find after she was gone.

"The first time I found a note caught between books, I thought nothing of it," said Keith Desserich, 34, and an entrepreneur. "But then I started to find 20 to 30 notes, and wondered if there was something more to it. One -- 'I love you Mom and Dad' -- was packed in a bag of clothes put away for the winter."

Soon, the family got calls from her grandparents, saying they, too, had colorful hand drawings from Elena. One aunt even found a note written to her chihuahua, which little Elena loved.

Now, two years after Elena's death in 2007, the Desseriches have compiled a book, "Notes Left Behind," a collection of their daily journal entries and their daughter's notes.

They hope that by sharing Elena's 256-day struggle, the little girl who loved pink, only wore dresses and wrote her name backwards, will help other families. They say she may even offer hope for a "home-run cure" for her form of cancer and others.

The book was never meant to be a public offering. It was designed to leave another kind of legacy -- to preserve memories for Elena's younger sister Grace, who was 4 at the time of her illness.

"We were told Elena had 135 days to live," said Desserich. "When you are greeted with that kind of diagnosis, your world changes. When we started writing, we focused on the memories, but then we realized there was a higher meaning in what we were going through and it helped crystallize our thoughts."

"We made sure she realized what her sister was like and that she understands how to be a mother herself," said Desserich. "We also started focusing on the things that cheered Elena up."

Brain Cancer Journal Resonated

The journal was first posted on the Desserich family Web site, which was designed primarily to keep family and friends in the loop. But soon, strangers began responding to the entries -- so many, in fact, that the site crashed.

"People started writing letters saying, 'You don't know me, but this changed the way I related to my son or daughter. Please consider writing again.' So the simple letter we started to Grace became much more than that."

Elena inspired her family with her optimism and joy.

When her cancer progressed and she could no longer speak, she turned to drawing and painting -- her kindergarten passions -- to communicate.

She fulfilled a dream when one of her drawings was hung next to one by her favorite painter, Pablo Picasso, at the Cincinnati Art Museum.

It was also her family's message -- to spend precious time with your children -- that resonated with thousands of readers.

"Around the holidays, we went to the mall and saw everyone walking around buying things and completely every last item on their list," said Desserich. "But they are not thinking about the holiday season. We are walking around with Elena and know the true meaning of the holiday."

The couple self-published their journal, selling more than 7,000 copies, and friends encouraged them to use their podium to raise funds for cancer research.

Profits from the sale of each book will go to The Cure Starts Now Foundation, which they founded in honor of Elena.According to the Centers for Disease Control, cancer is the number one disease that kills children in the United States, more than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

Elena was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) -- one of the most virulent forms of cancer that affects only about 200 to 300 children a year.

While Elena never knew she was dying, she was aware how devastating the disease was.

"It robs a child of one or two things a day -- rolling of the tongue, the ability to move a leg or write," her father said. "Each day, you wake and look at the body and wonder what you're losing."

Parents 'Coping on a Daily Basis'

Such was the case with Alexis Agin, who 18 months ago, was diagnosed with DIPG at the age of 2. She had been through months of seemingly unrelated symptoms: nightly vomiting, an apparent throat infection and acid reflux.

The Arlington, Va., girl then developed an "inverted eye" that her teachers and pediatrician thought might be innocuous, according to her father, Jonathan Agin, a 38-year-old lawyer.

But an MRI revealed cancer in her brain stem, like "sand strewn into grass and not a solid mass," he told The diagnosis came two weeks before his wife Neely found out she was pregnant with their son Gabriel, now 10 months old.

"We are still coping on a daily basis," he told "You get the news, then are essentially left without much assistance. That's when we started to research and find the best doctors."

Alexis received radiation, as did Elena -- a standard protocol for the disease -- and has since been asymptomatic, attending school and living a normal life.

The growth of the tumor has also slowed because she is part of a clinical trial of a new drug.

"She's one of lucky ones in this fight," said her father. "I try to do as much as possible with her and give her as normal life as possible, disciplining her as I would any other child. It's a difficult balance."

"Although Alexis is in progression of the disease, the fact that she has lived longer with it than most can give a margin of hope," he said.

The Agins met the Desseriches last summer and while lobbying for pediatric funding on Capitol Hill, agreed to head the Washington, D.C., chapter of their foundation.

"In my mind, while my daughter is still fighting and the treadmill is still moving, I can run on it and do all in my power to find treatments and researchers when a lot of physicians aren't because it's not worth their while."

Still, he is discouraged by the lack of funding, compared to adult cancers -- $24 million for pediatric research, compared to $520 million for breast cancer.

The brain tumors, like the ones in Elena and Alexis, are a "death sentence," with current therapies, according to Dr. Henry Friedman, co-deputy director of the Preston Robert Tisch Brain Tumor Center at Duke University.

"We have made no progress in three decades of work," he told "But with newer therapies that can produce newer outcomes, the hope of survival is always present."

These tumors cannot be removed by surgery without severing the brain stem. They resist radiation and chemotherapy treatments, said Friedman, who left pediatric for adult oncology because of frustration with poor funding.

Pediatric Cancer Funding Scant

"The bottom line is pediatric cancers have problems because the pharmaceutical companies are less likely to support non-federally sponsored research in adults," he told

"If you do successful studies in lung, breast, colon cancer or melanoma, you sell gazillions of dollars in drugs," Friedman said. "But in successful trials in rare pediatric cancers, it's very difficult to anticipate a profit. And if you make a mistake and kill a kid, it stops the whole process."

Desserich said he hopes that his foundation can force scientists to think about new methods and "not the same old dinosaur drug therapies."

Parents of dying children are more willing to take risks, he said, and children are better able to sustain difficult cancer treatments, ones that could lead to cures in all cancers, even adult ones.

"We are not just another cancer charity," said Desserich. "We have tried to cure cancer for 70 years, but this may offer us a chance to make a large leap."

Dedicated to the research that they believe will make such a difference, the Desserich family allowed doctors to perform an autopsy on Elena's body. They have buried her ashes under the scarlet maple tree she picked out before her cancer.

"The tree was scrawny, but it was also cheap," wrote Desserich in the final pages of "Notes Left Behind." "So we bought it, never expecting it to thrive or flourish. Three years later, it's the strongest tree in the yard and also the prettiest."

Click here to view the Agins' journal, Caring Bridge.

Click here for The Cure Starts Now and information about Race Against the Odds to benefit the foundation.