One year has passed since 7-year-old Sophia Ann Myers died of DIPG, and still Coast parents are no closer to finding out why Coast kids are dying of the rare and incurable brain cancer called diffuse intrinsic pontine glioma.
According to the state Department of Health, the elevated number of DIPG cases in Ocean Springs children over an eight-year period is a “chance temporal clustering” of cases.
What does that mean? The state agency calls it a cancer cluster that occurs in a small area in a shorter time frame than expected, but one that statistically “averages out over a longer period to what is expected.”
In other words, it is a cancer cluster that happened by chance in a shorter time frame than expected in relatively small area, but the numbers are still statistically insignificant.
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“DIPG clustering is often cited in many locations around the world,” according to dipg.org, but “it is possible that environmental conditions can create clustering phenomena.”
Since 2010, Sophia and two other Ocean Springs children — Sophia Mohler, 8, and Jaxon Schoenberger, 6 — have died of DIPG, prompting questions about what is causing so many children to suffer from the rare disease.
MSHD began an investigation after a pediatrician expressed concerns over the number of Ocean Springs children diagnosed with DIPG, a cancer so rare it only strikes between 300 and 400 children a year nationwide.
After the third diagnosis, the parents of the children and others questioned why so many in children would face one of most rare and deadliest cancers, primarily found in children.
The Sun Herald spent seven months investigating the cases as chronicled in the six-part investigative series, “Diagnosis: Death.”
The final report, though detailed, has shed no new light on the rare cancer and what may be causing it.
MSHD based its findings on available statistical and scientific data.
The data came from University of Mississippi Medical Center’s cancer registry, state death certificates, the Agency for Toxic Substances Registry and the Centers for Disease Control and Prevention’s national cancer database with assistance from a state pediatric oncologist.
The investigation did not include any environmental testing because, the report said, there was “no data in the literature that suggests environmental testing” is needed, much less information on what to test for and what substance to test.
Ultimately, the health department reiterated once again that the number of DIPG cases in the relatively small area were elevated but not statistically significant.
State Sen. Brice Wiggins, whose district includes Ocean Springs and Pascagoula, said he felt the state agencies investigated what it could based on the data available on DIPG.
He also praised the Coast families who helped bring more awareness to the disease, a move that prompted him and other lawmakers to call for an investigation and to form a statewide Rare Disease Advisory Council to take a further look into rare diseases and to monitor them.
In addition, local, city and state lawmakers declared a DIPG Awareness Day in honor and in memory of the three Ocean Springs children who have died of DIPG.
Long before, and even after, the death of the three Ocean Springs children, others in the state and nearby Alabama have suffered from the same rare cancer.
For some of them, the fight continues, while others have already lost their lives to DIPG.
Here’s a look at just some of those cases.
- Reed Elise Magee, 5, of Beaumont, died of DIPG in July 2010.
- Gentry Terrell, 6, of Columbia, died Aug. 3 after a short battle with DIPG.
- Jaden Blair, 14, of Louisville, is battling DIPG.
- Aubreigh Nichols, 10, of Semmes, Alabama, was diagnosed with DIPG in September 2017. She died earlier this year.
- Destiny Goss, 17, of George County, was diagnosed with DIPG in June 5, 2010. She died Oct. 17, 2010.