Grad faces cancer head-on

It’s not out of the question that Simon Cowell could show up at this year’s Blooming Prairie High School commencement ceremony.

After all, he’s the guardian “Angell” of one of the graduates.

But before we talk about that, let’s talk about Madelaine Stoen’s nose.

More specifically, a bump inside her nose that appeared shortly after she turned 3.

Her parents, Randy and Amy Stoen, tried to take care of it themselves, but it wouldn’t go away.

Medical professionals from Kasson to Owatonna to Rochester said it was a cyst; CAT scans and MRIs confirmed it was “an all-inclusive cyst.”

She was scheduled for a quick surgery to remove it, followed by some simple “plastic surgery” to minimize any potential scarring at the corner of her nostril.

It was set for Feb. 20, 2008; her parents, Randy and Amy Stoen, expected to take Madelaine home later that day.

“Hours went by,” Amy Stoen said, “and we kept waiting.”

The diagnosis

Finally, a doctor appeared.

“He told us it was not a cyst,” Stoen said. “Her whole face had cancer. It went up to her eye socket, over to her ear and down to her mouth.”

It was rhabdomyosarcoma, a particularly rare cancer that accounts for about 3 to 4% of all pediatric cases. About 350 cases are diagnosed in the U.S. annually, according to 2022 statistics.

Not only was it rhabdomyosarcoma, or RMS, but it was the worst strain: Alveolar rhabdo.

Madelaine had less than a 20% chance of survival, her parents were told.

But they were in the right place: Dr. Carola Arndt, a pediatric hematologist/oncologist at Mayo Clinic, had just returned from Switzerland, where she’d attended a symposium – on RMS.

The treatment

Madelaine’s chemotherapy started within a week.

The cancer was so rare that the treatment protocols being used were more than 40 years old; Arndt learned of a study to determine the effectiveness of a new drug. Madelaine was accepted.

Doctors also suggested the Stoens take their child to MD Anderson Cancer Center in Houston, Texas, for proton therapy radiation, a more precise, controlled form of treatment.

They declined, opting instead to keep Madelaine close to home.

She had a year of chemotherapy and about eight weeks of radiation, all at Mayo Clinic.

“She does have smaller facial features because of the radiation,” Amy Stoen said. “Because she was so little when she had it, it stunted the growth of some things.”

Within a month of a simple surgery to remove a “cyst,” Madelaine had lost all of her hair and had a feeding tube inserted.

Throughout the ordeal, the Stoens isolated themselves and their daughter, hoping to protect her from any secondary illnesses.

Madelaine remembers “just some of it,” but to this day, she’s still going to Mayo Clinic at least once a year.

Side-effects

“You can’t really tell, looking at her, but one eye stays wide open when she smiles,” Amy Stoen said.

You also can’t tell by her smile that her upper teeth are permanent implants.

The radiation to her face at age 3 ½ destroyed the roots of her adult teeth, which meant they didn’t descend naturally – and didn’t push her baby teeth out.

“We knew something was coming,” Stoen said.

“She had her baby teeth pulled over the years, so her adult teeth could drop down,” she said.

But without roots, something as simple as eating a potato chip could – and did – cause a tooth to come out. Soon, she was down to just four adult teeth on the top.

Working with a dental surgery team, an orthodonture team and a prosthetics team, the course of treatment was a bit unorthodox:

Three days after Madelaine finished eighth grade, she started daily trips to Mayo Clinic’s hyperbaric oxygen chamber. The goal was to build up the oxygen level in her blood to prepare her for jaw surgery.

After four weeks, surgeons removed her four remaining teeth and put metal posts in. The posts would provide the base for the implants, but it was a risk.

“They had one shot at it,” Stoen said, “and they were afraid it would shatter her jaw.”

If the surgery didn’t work, her mouth would essentially collapse in on itself without the structure.

“I was very nervous going into that surgery,” Madelaine said.

Her relief is captured in a photo taken a few days later as she lay in a hospital bed, wearing a goofy grin that displays the four somewhat barbaric-looking posts.

The day after surgery, the daily trips to the hyperbaric chamber resumed for the next two months.

“I just wanted her to be as normal as she could be – and so did she,” her mother said. “How many 15-year-olds can deal with getting their teeth taken out, and implants put in?”

The lessons

Madelaine tends to let her mother tell her story, mostly because she has few memories of the worst parts of it.

Amy and Randy Stoen, of course, lived it.

“I’ll never forget one of the doctors telling us, ‘this is your new normal.’ It’s with you every day,” Amy Stoen said. “It’s something you get comfortable with, but you never let your guard down.”

What they learned, she said, is “the more we talk about it, the more awareness it brings to pediatric cancers – which tend not to get much attention.”

Madelaine has always been very open about her health history, and learned compassion early.

“I don’t necessarily feel different” from other young people, she said, “but at a point, I was different. I didn’t have any hair; I was going through things that other kids weren’t – so I knew what it was like for kids going through a hard time.”

Though she wasn’t school age when she got sick, “I was in a situation that I could’ve gotten judged about, if I was in school then.”

These days, Madelaine is an open book, her mother said; and she’s never been bullied.

“The Blooming Prairie schools have been awesome,” Stoen said.

The aftermath

During the diagnosis and treatment discussions, the Stoens were told Madelaine would never be the same.

“They sat us down, and said she’ll probably (eventually) have cataracts, she’ll probably (eventually) need hearing aids, blood transfusions…,” Amy Stoen said. “So far, there’s been none of that.”

Those are the result of the medication used in the chemo, she said.

“The drug produces a secondary cancer,” Stoen said, “more than likely, a blood cancer.”

Any sign of that?

“Not yet,” she said, “but she’s still in that (age) window where it can appear. They said it usually happens in their late teens or early 20s.”

Madelaine is 18 – which also means her medical decisions are now her own.

She’s unafraid of that responsibility, and her mother is confident.

“She’s lived and breathed Mayo Clinic, and she’s very aware” of any changes in her body, Stoen said.

Still, Madelaine said, “day-to-day, I don’t think of it as much, unless something happens – or I look back at the pictures. I do think about it a lot when I have my (annual) check appointments.”

She realizes there may always be precautions needed: As a three-sport athlete at BPHS, she had a special mouth guard made and wore a face mask even while playing in the outfield during softball season.

Though she was never injured during any basketball, softball or volleyball games, “I would get on edge if someone was throwing me the ball … how hard are they going to throw it?”

Madelaine has nerve damage from the chemotherapy; her bones are more brittle because of the radiation.

“A lot of people look at her and say, ‘oh, she beat cancer. She’s done,’” her mother said. “This is what I want people to know: It’s not just one and done.”

Giving back

Madelaine has raised thousands of dollars for cancer research and gifts for other children with cancer, much of it through the Blooming Prairie Cancer Group.

She’s spoken at several fundraising events in the area; served as the honorary chair for the Dodge County Relay for Life; donated the proceeds from bracelets and keychains she made, as well as crocheted dishcloths, headbands, potholders and more; and when she was 9, raised more than $1,000 to buy books for the Mayo Clinic Children’s Center.

She’s donated her hair to Locks of Love twice, including the time she solicited bids during the BP Cancer Group auction – raising another $1,300 to donate toward research.

But she isn’t done.

Madelaine will attend Riverland Community College and enter the radiography program. The goal is to eventually work in radiation therapy.

She was on the fence between several medical fields, including nursing and dentistry.

“Every big hitter that she’s experienced” was considered, Amy Stoen said.

But it was a long-standing tradition that ultimately helped her decide: She remembered ringing the bell after her final radiation treatment.

“I want to be there with other kids when they get to ring the bell,” Madelaine said.

The future

Choosing Riverland also meant she’d be around for her sister Ellie, 13.

“She’s only in seventh grade,” Madelaine said. “I didn’t want to miss her whole high school career. She’s been watching my sports, and all my accomplishments all these years – I didn’t want to go somewhere where I wouldn’t be here to watch her do the same thing.”

Madelaine will graduate from BPHS with a 4.0 grade point average.

For her part, Ellie didn’t want her sister to leave, either.

“It’d be hard not to have her here every day,” she said.

The medical future is less certain.

Because of the extensive radiation and chemotherapy, Madelaine is expected to go into menopause by her early 20s. Doctors have presented options to allow her to have children; she expects to make those decisions soon.

“I’ve always known that I’m not done,” she said. “I can’t say I beat cancer, because there might be a time when I have to go through it again.”

Simon Cowell

Back to the acerbic former “American Idol” judge.

A week after Madelaine was first diagnosed with cancer, the sister of a friend of Randy Stoen wrote a letter to, of all people, Oprah Winfrey.

It fell into the right hands, and the Stoens were asked to come to Chicago for a taping of the show.

A camera crew and team of producers came to Claremont, then followed the Stoens to Rochester. It was the day Madelaine’s hair started to fall out, as well as the day it was decided she needed a feeding tube.

The Oprah team caught it all.

Amy Stoen was reluctant to leave Madelaine home when the time came, but her parents convinced her.

“They said, ‘we don’t know if she’s going to live. Take this opportunity and go talk about pediatric cancer. Go.’ So we went,” Stoen said.

Cowell was on a different segment of the show that day, but he saw the footage of Madelaine, losing her hair, crying in pain, then smiling over a serving of French fries.

“Something clicked,” Stoen said, and when Cowell hear Madelaine’s middle name – Angell, after her maternal grandmother – he fell in love.

“He proclaimed himself to be her guardian angel from that day on,” Stoen said.

He then endeared himself to the rest of the family by handing them a personal check for the balance of the mortgage on their rural Claremont home, so they “can worry less about money and focus on taking care of Madelaine.”

They remained in touch for years, but his liaison eventually took another job; the Stoens are looking for another way to update Cowell.

It’s a longshot, but as Madelaine said, “I’ve beat the odds before.”