For months, Ariel Porter didn’t know what was wrong.
She felt violently ill, like she had the flu, but she just couldn’t shake it from late June through July.
“I was just angry, because I was like, ‘What is wrong with me?’” Ariel said. “I couldn’t even be in the light. I couldn’t even have my room light on.”
All that the first two doctor’s offices she visited had identified was that she appeared to be anemic.
The mystery ended when on Aug. 1 she collapsed because of a seizure.
“I just remember sitting up on my bed, and then it just went black,” she said. “It was black, and then I was lying in front of the dog cages, and I saw … a gurney, and then I was in an ambulance.”
Ariel had a second seizure while she was at the hospital, which helped show the medical professionals treating her that there was something underlying that was causing the damage, Tasha Cotton said.
Within at most an hour, the family had their answer: Ariel had at least one tumor in her brain, sitting at the top of her brain stem.
It was the cause of her problems, such as her vision going black, nausea that wouldn’t respond to medication, squeezing in her head that exceeded the pain of a migraine and her legs buckling.
“I don’t even know how to explain the pain,” she said.
In pediatric cases, a diagnosis of diffuse midline gliomas with the h3k27m mutation is generally a death sentence.
“When she got diagnosed, they told us we had 30 weeks from diagnosis, which would have been Aug. 16,” Tasha said.
Monday, Ariel was in Houston, being tested to ensure she was the right fit for one of two spots in a clinical trial for a new cancer drug, ONC201 from Oncoceutics, which has given the family hope that Ariel might beat the odds.
“It feels like I won the lottery,” Ariel said about being selected.
Ariel has already seemed to do better than expected, even considering the three gliomas sitting in her brain, the other two residing in her right hemisphere.
She had brain surgery to relieve some of the pressure and swelling caused by the gliomas.
She also went through proton therapy and chemotherapy, and with the exception of a small spot at the back of her head she kept her hair.
More importantly, Tasha said, she was not paralyzed by the proton therapy treatment, which was a possibility, and her tumors are not causing facial paralysis.
“We’ve had a few issues, but they’re very minor compared to the list of what they said we should be going through,” Tasha said.
One source of hope from the ONC201 trial is a 22-year-old who was treated in the first round of testing.
“She was one of the original patients that did the study and over an 11-month period, they were able to reverse her mutation to a remission,” Tasha said. “There’s nothing on her scans.”
MD Anderson Cancer Center is one of the few locations for the clinical trials of the drug. And getting into the study, for Ariel and Tasha, was bittersweet.
“MD Anderson only had two spots, and they have 40 pediatric patients trying to get into those two spots,” Tasha said. “So, it’s sad. … We feel bad for all the others. It’s kind of bittersweet.”
When Ariel spoke with The Post-Signal, she still didn’t know if her test results would permit her to be in the study. She was hopeful, however, that if she was selected that her willingness to be a test case would benefit others who develop the same mutation after her.
“If it goes well for me, they can give the drug to someone else, and if it goes well for them, they can give it to someone else,” she said. “I just want it to be FDA approved, because if it is FDA approved, then it’s a different treatment.
Because the only government-approved treatment is just chemo and radiation, and some people don’t even get proton therapy. They just get regular radiation.”
The 16-year-old has a large support system, which includes her siblings and stepsiblings. Her stepsister Cailey Cotton drives in from Louisiana every two weeks to be with Ariel. The two are best friends.
“Car rides are peaceful,” Cailey said. “It gives me a lot of time to think. It’s like a four-hour car ride.”
Cailey accompanied Ariel, Tasha and Ariel’s stepfather Nathan Cotton, to Houston, and Nathan and Cailey drove back to Providence Village on Tuesday so Cailey could return to school in Louisiana by Wednesday.
Ariel’s little brother, Aydan Porter, said he is impressed by the strength and the positivity his big sister has shown.
“She’s so strong and she can actually fight through all of this and she’s not just giving up, like ‘Oh, well,’”he said.
It’s been hard on the whole family, both the Cottons as well as Ariel’s biological father and stepmother and Ariel’s siblings. However, they are grateful to still have Ariel and to see her continue to fight against the cancer.
“I’m thankful for what I have,” Ariel said. “Even though bad things are happening, you can always look to the good side, whatever’s happening.”
Ariel has plans for her future that she is working toward, including getting her GED and wanting to go to college and use getting her basics completed to figure out what she wants to study as her major.
She’s considering something in business so she could run her own company someday.
And, despite everything, she keeps a positive outlook, saying everything could have been worse.
“So far we’ve won like every battle,” Ariel said. “So, so far, so good.”