MOBILE, Ala. (WKRG) — Cancer makes no exceptions, and when it’s DIPG, it’s relentless. There’s no cure.
Diffuse Intrinsic Pontine Glioma is an aggressive childhood brain tumor.
Aubreigh Nicholas from Semmes died after a battle with DIPG. Her parents say they’re still taking one day at a time.
“There’s good days, but there’s no great day when you’re missing a child,” said Jay Nicholas.
Aubreigh loved life, and she loved to dance, and that’s where the problem came to light.
Jay Nicholas said, “The dance teacher noticed it, she was having a hard time doing steps that she typically didn’t have any problem with at all.”
With DIPG, the tumor is an area of the brain that controls vital bodily functions.
“Your breathing, your heart rate, but also the nerves that help us to see, to hear, to speak, to chew, to swallow. We see maybe a change in vision, or a change in the eyes, maybe looking crossed, or sometimes it may be weakness or unsteadiness in the gait. So there are a variety of symptoms that can manifest,” said Dr. Felicia Wilson, USA Health Pediatric Hematologist-Oncologist.
Children with DIPG may also experience headaches or vomiting, and doctors say it all typically happens quickly.
“Not more than weeks to a couple of months,” Dr. Wilson told News 5.
Dr. Wilson was one of Aubreigh’s doctors. She told Cherish Lombard that in her 28 years of practice, she’s only seen about 8 patients with DIPG, but more seem to be surfacing in recent years.
She said, “Kind of an explosion of cases here along the Gulf Coast.”
And she says doctors aren’t really sure why.
“We do know we diagnose more brain tumors because we have better imaging techniques with MRI,” she said.
Dr. Wilson says the rarity of cases makes it difficult to study and make meaningful decisions about why it’s happening. And when a child is diagnosed, she says surgery is not an option.
“It’s at the base of the brain and that’s a very small space. The way this tumor grows is not so much like a mass like this but imagine my fingers sort of infiltrating. So to get all of that out would be very difficult,” she said.
So for now, research to find a cure continues.
Dr. Wilson told News 5, “There have been over 200 different clinical trials testing drugs that have not been successful. so right now radiation is the mainstay of treatment. And in most cases, it’s able to shrink the tumor some but it’s not enough to get rid of it or to control growth. So at best, radiation gives them more months of maybe being symptom-free or having a better quality of life, but it’s not curative.”
Doctors say most children with DIPG live about 9 months after diagnosis. Aubreigh Nicholas was diagnosed with DIPG on September 12th, 2017 and passed away on August 15, just shy of a year later. She was only 11 years old.
Jay Nicholas said, “She fought, all she’d say is I want to be normal.”
“She was my best friend. I told her everything. Everyday interaction, Her smile, her laugh. She walked into a room and everybody was immediately in a good mood,” said Brooke Nicholas.
Jay said, “Aubreigh will not be the last child that gets this.”
Dr. Wilson said, “For those cancers that have good outcomes, we know what happens on the back end. So we know why we put the children through what we do. But we know that there’s hope. And that’s the problem with DIPG; there’s no hope that we can offer at this point.”
Dr. Wilson says most children are diagnosed between the ages of 5 and 9, but even infants can get DIPG. She says parents of very young children should look for: changes in your child’s eyes, irritability, uncontrolled vomiting and bulging in the soft spot, or fontanelle that could be a sign of increased pressure in the brain.
You can learn more about DIPG, and help fund the fight for a cure when you visit: https://dipg.org/dipg-stats
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