In November 2006, Cincinnati residents Keith and Brooke Desserich learned their young daughter, Elena, had a rare and fatal brain tumor that had only been given a diagnosis name one or two years earlier.
Doctors diagnosed Elena with diffuse intrinsic pontine glioma, or DIPG, an inoperable and cancerous tumor that forms on the base of the brain stem and spreads.
Nine months after her diagnosis, 6-year-old Elena — a little girl with a long-held passion for reading and art — died.
Soon after, her parents helped form The Cure Starts Now foundation in memory of Elena. Their mission is to raise money for research that is needed to find a cure for the many children fighting the type of brain-stem gliomas everywhere.
Keith Desserich is now chairman of the board of directors for CSN, the leading supporter of DIPG research nationwide.
Since Elena’s death, Keith Desserich has fielded many calls and received countless emails from families from all over the United States who are concerned about a possible DIPG outbreak because of a number of cases that have cropped up in a certain geographic region.
The Sun Herald reached out to Desserich for his input after the DIPG diagnosis of a third child in the Ocean Springs area over an eight-year period. Parents are concerned something may be causing the elevated number of DIPG cases in that area.
“We hear this request numerous times a year in different regions,” Keith Desserich said. “I probably have another six emails that I’ve received this year alone, all from other people in other cities indicating that they have a higher than normal DIPG case set.”
The CSN has the largest database of known DIPG cases worldwide and a look at those numbers versus the geographic origin of each of the cases, he said, “demonstrates no geographic connection to incidence at this time.”
“This is most likely what we are seeing in Ocean Springs,” he said. “Can we firmly say it has nothing to do with environmental factors? No, but we can neither say it does.”
Desserich points out that DIPG cases are often not reported as such or are recorded in the statistics as a type of brain tumor without a specification as a DIPG diagnosis. In other cases, he said, there are patients who are misdiagnosed and in some cases, there are patients suffering with DIPG who are never diagnosed.
“I think we all feel we still don’t have reliable statistics on the number actually affected by DIPG each year,” he said, adding that he hopes doctors or parents will consider forming a central registry to add the information about any cases to keep track on the number of DIPG diagnoses and where they have occurred.
Can we firmly say it has nothing to do with environmental factors? No, but we can neither say it does.
Keith Desserich, chairman of the board of directors for The Cure Starts Now
Desserich found himself faced with the same fear among residents in Cincinnati’s Tri-State area after two other children died of DIPG. This followed the death from DIPG in April 2015 of 19-year-old Lauren Hill who lived in the same area. She was a well-known college basketball player at Mount St. Joseph University who brought awareness to the deadly cancer and raised more than $1 million for cancer research.
Despite the number of deaths, Desserich said, there was no increase because the state of Ohio was expected to see an average of four to six DIPG cases a year. The statistics, he said, seemed to be consistent with that number of cases in the short time frame.
“Believe me, as a father,” he said, “I would love to have been able to find something to blame for what happened to Elena.”
After Elena’s death, the Desserich family found notes Elena had written them and left in different hiding places in the house for her family to find after she died.
Her parents used the notes and published the book, “Notes Left Behind,” which featured some of those loving words their daughter had to offer them.