Angel Myers fell to the floor when she learned her only child had the same rare and terminal brain tumor that had already killed two Ocean Springs children.
She doesn’t remember her fall — only the neurosurgeon on the floor with her, holding her tight and trying to comfort her.
Seven-year-old Sophia Myers, the doctors told her parents, had anywhere from nine to 12 months to live.
“When they told us what was happening, it was the worst day of my life,” said Sophia’s father, Josh Myers.
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The tumor forms on the base of the brain stem and spreads like sand. Radiation can slow the tumor for a few months, but it is inoperable and there is no known cure.
DIPG strikes only 300 to 400 children a year nationwide, primarily between the ages of 4 and 11, according to doctors and specialists who treat DIPG.
Sophia’s case is the third in eight years in Ocean Springs, a coastal Mississippi city of just under 18,000 residents within the heavily industrialized Jackson County.
“Something is not right,” said Angel Myers, who has spent her career prosecuting adults who sexually abuse children.
“We are in a small area. We are industrial. We’ve had the BP oil spill. We’ve had (Hurricane) Katrina. Why have three of our children gotten one of the deadliest and rarest diseases? Why is this happening?”
One of the children’s diagnoses came before the BP’s Deepwater Horizon oil spill in 2010.
“There are no known environmental exposures, radiation sources or genetics related to the cause of DIPG,” Dr. Paul Byers, epidemiologist from the state Department of Health, said in an email.
The Sun Herald also learned of a fourth case of DIPG that occurred 62 miles north of Ocean Springs in the city of Beaumont. Doctors diagnosed Reed Elise Magee, 5, with DIPG on July 7, 2010, her mother, Laverne Magee said. She died nine months later on April 17, 2011.
On Sept. 12, another child, Aubreigh Nicholas, 10, of Semmes, Alabama, was diagnosed with DIPG. Semmes is about 40 miles east of the Jackson County line.
A cluster of cases?
Ocean Springs pediatrician Van Wurm discovered the mass on Sophia’s brain.
Wurm reported the third case of DIPG to the Mississippi State Department of Health to confirm the number of DIPG cases in the area was elevated for the eight-year period.
“I’d think everybody would like to see if this is something that is statistically significant,” he said
Byers confirmed a doctor had called to report the latest case of DIPG and request an evaluation. Byers declined to be interviewed by the Sun Herald, but responded to questions sent by email.
“While the rate of DIPG in the small city was elevated over the time frame,” he said, “it is difficult to draw any conclusions from such small numbers of rare events.
“Because of the rarity, observation of the incidence of DIPG in a specific geographic area would need to be evaluated over a number of years to estimate a rate with any statistical stability.”
Jackson County was the only county in Mississippi that saw an increase in childhood cancer cases based on population over a five-year period, a statistical review by the National Cancer Institute shows. Between 2010 and 2014, the report showed childhood cancer rates for children 15 and younger increased by an estimated 50 percent in the county, the review indicates. According to NCI officials, the numbers reflect an annual average age-adjusted death rate of 5 per 100,000 people between 2010 and 2014.
50%Amount cancer rates increased in Jackson County for children 15 and younger between 2010-14
Mississippi ranks second in the nation in average annual death rates for all cancers combined between 2010 and 2014, according to NCI officials.
The Sun Herald asked for the number of DIPG cases diagnosed in the state, with a breakdown by county for the last 15 years, but the health department and University of Mississippi Medical Center, which keeps DIPG statistics for the patients they treat, said releasing the numbers could compromise patient confidentiality.
The Mississippi Cancer Registry keeps statistics on cancer in the state, but DIPG is not one of the cancers broken down by type. DIPG is included in the total number of gliomas, or malignant tumors found in the brain or in the brain stem.
Between 2010 and 2014 in Mississippi, there were 74 malignant gliomas diagnosed in children ages 0 to 14, with 824 cases diagnosed in people 15 and older, according to the Mississippi Cancer Registry.
During that same time period, doctors diagnosed 460 other malignancies in children ages 0 to 14.
A breakdown of the numbers by county is not available, again due to patient privacy laws.
‘There has got be some trigger’
Others in the community, including David and Theresa Mohler, want to know why other Ocean Springs children have suffered from DIPG. Their daughter, also named Sophia, was diagnosed in 2009 and died just over a year later, when she was 8 years old.
In March 2014, Ocean Springs resident Jaxon Schoenberger, 6, was diagnosed with the tumor. He died eight months later.
“When it happened to the boy, I thought, ‘OK, I guess that could happen,’” David Mohler said. “But then a third child ... and I’m like, why is this happening?”
When the Mohlers learned Sophia Myers had been diagnosed with DIPG, they reached out to the DIPG specialist who treated their daughter to find out what he thought about the three cases.
The doctor, they said, thought it was worth looking into.
Theresa Mohler has the same feelings as Angel Myers about the number of DIPG cases on the Coast. “Something is not right,” Mohler said. “There has got to be some trigger around us that is causing three kids in the same town to have this rare brain cancer.”
Why have three of our children gotten one of the deadliest and rarest diseases? Why is this happening?
Angel Myers, mother of Sophia Myers
Like others diagnosed with DIPG, Sophia Myers’ symptoms surfaced quickly and left parents with questions and concerns about their children.
“Angel, you know, has already been in the field of supporting children and advocating for children, so we know her from doing her work,” Ocean Springs School District Superintendent Bonita Coleman said. “So this one — it really hit close to home.
“Sophia was on the dance team. She was really active at Oak Park (Elementary). She is just this beautiful little girl with gorgeous hair who looked like the picture of health.
“That, I think, is the shocker, that these kids look so healthy and then all of a sudden, there is something wrong.”
After looking at the research on DIPG and the statistics on its rarity, Coleman said, “It raises concerns for everyone, but it doesn’t necessarily mean anything is wrong.
“I just want to figure out what is making this happen to our children. I think anyone who lives here is in the same position.”
Mississippi cancer numbers
Here is the total number in Mississippi of malignant gliomas, or brain tumors, which include the rare and deadly DIPG. Because all brain tumors are reported as one group, numbers are not available that specifically show a breakdown of DIPG cases.
84 malignant gliomas in children ages 0-14
714 malignant gliomas in ages 15 and older
74 malignant gliomas diagnosed in children ages 0-14
824 malignant gliomas in ages 15 and older
Overall pediatric malignancies statewide
430 pediatric malignancies in children ages 0-14
460 pediatric malignancies in children ages 0-14
Mississippi Cancer Registry