HOLLAND, Michigan — DIPG stands for diffuse intrinsic pontine glioma. It's a rare form of childhood brain cancer that's highly aggressive, difficult to treat and has an average life expectance of only nine months.
But a 9-year-old from Holland, Mich., who was diagnosed in 2018, continues to beat the odds, thanks to a family support system that never gave up, leading to a clinical trial that's literally saving her life.
It was June 2018. Emerson Hoogendoorn was wrapping up kindergarten when she started experiencing fierce headaches and blurred vision. Her grandmother gave her ibuprofen, hoping it would help the headache go away, but it didn't.
"We decided to take her to the hospital," said Barbara Francis, Emerson's grandmother. "They did a CAT scan and found a large mass near her brainstem.
"They put her in an ambulance immediately and took her to Helen DeVos Children's Hospital."
Emerson would spend 11 days there, which would involve two serious surgeries, which would ultimately deliver a diagnosis her family didn't want to hear.
"They removed the tumor then told us Emerson had diffuse midline glioma, which is a form of DIPG," Barbara said. "After doing some research, we learned this was basically a death sentence, but we weren't okay with that."
Emerson would soon endure six weeks of chemotherapy and radiation. One of her doctors at the hospital suggested the family consider a clinical trial called ONC201, which was being offered at the University of Michigan Hospital in Ann Arbor.
"We went to Ann Arbor three months after the diagnosis, and soon after Emerson started the trial, her tumor shrunk to just 12%," Barbara said. "They weren't 100% sure if the tumor still existed or if what they saw on a scan was scar tissue from the surgeries."
For nearly three years, Emerson has taken the ONC201 trial medication every Wednesday. Barbara says never once, from the diagnosis to today, were there any moments with Emerson's health that were "touch-and-go."
"She's our miracle," Barbara said. "Doctors won't come out and say that Emerson is in remission, but I'll say that."
Emerson continues to live her life like her DIPG diagnosis never happened. She's starting fifth grade in the Holland West Ottawa School District on Wednesday, Sept. 1, then will be taking a hip-hop dance class soon after that.
"I could have died," Emerson said. "I'm happy that I'm still here."
Despite the success of Emerson's trial, she's not completely out of the woods yet. There is no cure for DIPG, which is why the family is preparing to host the fourth annual "Emerson the Brave Family Fun Day."
It's set to take place on Saturday, Sept. 18, from 8 a.m. to 4 p.m. at M.E. Yacht Restoration, 471 Howard Ave, Holland.
The public is welcome to attend.
100% of the proceeds will go to the ChadTough Defeat DIPG Foundation for pediatric brain cancer research and Van Andel Institute for Cancer Research.
For more information, send an email to: email@example.com
Or check out the event website by clicking here.
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