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O’FALLON, Mo. — The tumor took hold without anyone noticing.

Austen Mary Fields was halfway through her eighth grade year. She had celebrated her 14th birthday at an escape room in mid-January. Her mother, Cyndi, snapped a photo of Austen hoisting her cousin onto her back to carry her across the slushy remnants of a snowstorm.

It was just a couple of weeks later that Austen started to feel achy. Had she tweaked a muscle during gym class? Or maybe she had the flu, her parents thought.

On Feb. 4, her dad took her to an urgent care near their O’Fallon, Missouri, home. The X-ray of Austen’s chest showed a void. The darkness could indicate a few things.

“They weren’t exactly sure,” Eric Fields said.

So they drove to St. Joseph Hospital in Lake Saint Louis for more tests. The void — almost as big as a brick — was a tumor, and it was pressing on Austen’s kidney.

Before the day was over, Austen had been admitted to Cardinal Glennon Children’s Hospital.

“I was in shock,” said Eric, a former Marine. “How does this happen?”

When Austen’s biopsy came back, the hypothesis was that the tumor was a translocation renal cell carcinoma, a subtype of kidney cancer. But the pathologists had doubts.

“Parts were behaving in a way they had not seen before,” Cyndi said.

The tumor had engulfed the right side of Austen’s body. Its tentacles were entangled in her heart and liver. Smaller growths had taken hold on her lungs and in her lymph nodes.

Austen named the tumor Raphael. It reminded her of a vampire.

It would be March before they learned what it really was: a cancer that strikes fewer than 1 in 3 million people, a cancer that almost none of the dozens of oncologists contacted by Austen’s parents had ever seen before. They called every major cancer center in the country, from Sloan Kettering in New York to MD Anderson in Houston.

“We talked to so many doctors,” said Cyndi.

When that led them nowhere, they looked overseas.

Good days, bad days

Before she got sick, Austen, dimpled and bespectacled, was usually in the middle of a project. She loved to bake, build with Legos and mess around in the basement craft room she shared with her mom.

At school, her favorite subject was history. She was a few months away from closing the chapter at Lafayette Academy in Lake Saint Louis, where her younger brother was in sixth grade, to begin a new one in the fall with her older brother at St. Dominic High School in St. Charles.

Austen’s bedroom — decorated with the American flag and a Constitution-inscribed bedspread — was her refuge, where she would spend hours reading, usually mysteries or fantasy series, like “The Hunger Games” and “Keeper of the Lost Cities.”

But after she got sick, Austen didn’t like to be tucked away. She spent most of her time on the living room couch, snuggled in blankets and stuffed animals. Her parents slept on recliners.

“We just like to be close to her,” said Cyndi, who works in logistics at Scott Air Force Base.

Nausea had scrambled Austen’s appetite. She lost 30 pounds from her 5-foot-1-inch frame.

“Nothing tastes how it should,” Austen said.

Everything wore her out, even reading. She missed performing in her final Theater Club play at Lafayette. She missed field day and accepting the blue ribbon she won at the school art show. Mostly, she missed seeing her friends.

On good days, Austen and her mom would give each other facials. She beaded necklaces and relaxed on the grass in her yard, a “grounding” practice believed to facilitate healing.

But the bad days — when she couldn’t wear shoes because her legs were so swollen or when a hug made her shudder in pain — outpaced the good.

Still, optimism was the goal.

“Happiness is a choice,” Cyndi would tell Austen — and herself.

Cardinal Glennon sent tissue samples to Johns Hopkins in Baltimore and the Mayo Clinic in Minnesota. Finally, a month after the tumor was spotted for the first time, the family got an answer: It was TFE3 Rearranged PEComa, stage 4.

PEComas are a type of sarcoma, a group of cancers that affect the bones or the body’s connective tissues. Sarcomas represent fewer than 1% of all cancer diagnoses in the United States, according to the National Institutes of Health.

Of the more than 80 types of sarcomas, PEComas are among the rarest — and most aggressive. About 1 in 3.3 million people will be diagnosed with a PEComa in their lifetime, and the vast majority are adults.

Kathy Liu of San Diego runs a nonprofit called , named after her son who died a decade ago from TFE3 Rearranged, when he was 10.

Joey’s Wings is the only foundation dedicated to PEComas, said Liu.

“It’s very lonely,” she said. “It’s a very complicated disease.”

At Cardinal Glennon, the oncologists told Cyndi and Eric that they had never seen Austen’s type of PEComa. A spokesperson for Cardinal Glennon declined an interview for this story.

The Fieldses joined a couple of Facebook support groups, connected with Liu and found two other American families dealing with the same diagnosis as Austen: a 2-year-old in Wisconsin and a teenager in New York.

There’s no standard of care for TFE3 Rearranged PEComa, said Dr. Mia Wallace, an oncologist at Siteman Cancer Center who specializes in sarcomas. The best bet is to get into a clinical trial, she said. But that’s the catch-22.

“Because this is so rare, it’s very hard to do clinical trials,” said Wallace.

In mid-March, Austen started on a drug called nab-Sirolimus, the only FDA-approved treatment for PEComa in children.

It didn’t work.

‘We’ll go anywhere’

Cyndi made a plea in early April on the she was using to update friends and family on Austen’s progress.

She listed everything they had tried, all the research they had done, the experts they had talked to.

“There is no known cure or even a decent path forward,” wrote Cyndi.

The only avenue left was a private clinic that would offer something beyond the traditional interventions that had failed so far.

“We’ll go anywhere in the world, and we’ll get the money,” she wrote.

Austen’s age presented its own hurdle. Her parents couldn’t find any clinical trials for minors in the U.S., and medical centers in other countries kept turning the Fieldses down. They would only treat adults.

Austen was in the middle of four rounds of immunotherapy and a targeted drug regimen at Cardinal Glennon. But the tumor was relentless.

In late May, the family heard back from doctors at the Williams Cancer Institute, a California-based center that performs procedures in Cabo San Lucas, Mexico.

Because Austen’s situation was so urgent, Cyndi said, the institute agreed to take her on as a patient. She would undergo — considered an experimental approach. The tumor would be directly injected with immunotherapy drugs, “with the goal of using the tumor as its own vaccine and with less chance for toxic side effects,” according to the Williams Institute’s website.

“With as rare as this cancer is, there has to be a rare type of treatment to solve it,” said Eric.

Staff at the institute did not respond to a request for an interview. The treatment is not covered by insurance, and the lower end of the cost estimate that Williams provided Austen’s parents was $300,000.

Heading to Mexico

Cyndi and Eric set up a . They tapped their network: family and friends, military contacts, the kids’ schools. Once the fundraising efforts reached their goals, the family would head to Mexico.

A week later, when they had about $60,000 in the account, Austen got another set of scans from Cardinal Glennon.

The main tumor had grown, again. There were 30 lesions on her liver. New metastases had formed on her lungs and lymph nodes.

There would be no waiting to get all the money together. They had enough to pay for the first “priming” treatment. They would worry about the rest later.

Austen and her parents left for Mexico on June 16. The next morning, when they arrived at the institute, doctors pulled Cyndi and Eric into the hallway.

They had looked at Austen’s new scans the day before. She was in too poor a state for the intratumoral treatment, they told the Fieldses.

They had traveled 11 hours for nothing.

Cyndi and Eric questioned themselves: Why did they drag their feet? They could have launched the GoFundMe as soon as they learned of the Williams Institute. They shouldn’t have kept hoping the infusions at Cardinal Glennon would work.

“We didn’t realize she could get worse so quickly,” Cyndi said.

The doctors at Williams said Austen could come back if, somehow, her tumor shrank. They told Cyndi and Eric about another American-founded clinic, this one in Tijuana.

Oleander Medical Technologies uses a process called , or TOL, to allow more sodium to enter cell membranes to “force cancer cells to burst, while leaving healthy cells unharmed,” the Oleander website says.

So the Fieldses changed course. They came home for a few days, then flew to San Diego and crossed the border on June 23 for the first of six TOL treatments over the course of three weeks. Oleander did not respond to an interview request.

Austen finished her final treatment Tuesday. She and her parents flew back to ӣ����Ƶ the next afternoon. For the first time in a while, the whole family was under one roof.

“We are homebodies,” said Cyndi. “It’s good to be home.”

They don’t know yet how the tumor reacted. For the next couple of weeks, they will try not to think about it. Friends have planned fundraisers: a car wash, a concert, a golf tournament. Austen will start another drug, Keytruda, at Cardinal Glennon. Her parents will attempt to coax her appetite back.

At the end of the month, there will be more scans.

Then, they’ll have to decide: What next?