She could not make herself get out of the car.
Alex Powell – a junior soccer player for the University of Dayton women’s team – had paid to go on the annual Dayton 2 Daytona trek UD students have made to Florida for over four decades. But this past May she tried to back out because of the growing anxiety and depression she had been experiencing.
When she couldn’t get a refund — and urged by her mom to try to get out of house and enjoy life — she packed her bags and headed to the airport to join her friends.
“But I couldn’t get out of the car,” she said. “I was freaking out.”
It was just another of the many debilitating side effects of the intense medications she had been taking for an aggressive desmoid tumor in her right shoulder that she’d been dealing with since before she came to UD in the summer of 2016.
Over the years there also had been the repeated depigmentation of her body from the strong rounds of chemotherapy she would take.
“It took the color out of my skin,” she said. “I was pale and my hair, my eyebrows and my eyelashes all turned white. My hair actually looked clear. I just looked strange. I looked like a corpse.
“And being a girl, your looks are important, so I started dying my hair black in my dorm room. My roommate would take box dye and put it on my hair as I leaned over the sink.”
She managed a faint smile and shook her head: “That pretty much destroyed my hair.”
She also became allergic to the sun. And while that meant wearing a cap to soccer practices, she was unprepared for the muted rays of the sun in the dead of winter.
“I walked around campus in February and got third degree burns on my lip,” she said. “I couldn’t eat for a while and at night I’d sleep and my lips would get stuck together. In the morning they’d tear as I tried to open my mouth.”
And the past two soccer seasons – though sidelined because of her compromised physical state – she suffered stress fractures along her femurs and across her hips just walking across campus.
“My bones were really soft and I ended up with all these fractures,” she said. “My doctor was like ‘Did you get in a car accident?’”
Flyers women’s coach Eric Golz has seen Alex’s struggle first hand:
“It’s been heartbreaking at times to watch the things she’s had to go through. But on the flip side, it’s also been inspiring to see her press on. She’s really impressive. She’s a fighter”
And, stress fractures aside, Golz summed her up perfectly:
“She’s simply unbreakable.”
Although always undersized, she was a standout soccer player at Fairfield High School and was recruited by schools like Ohio University, Middle Tennessee State and UD.
But in October of 2015 – her senior season in high school – a persistent pain in her shoulder was finally diagnosed as aggressive fibromatosis, which also is known as a desmoid tumor .
She said the mass was almost “grapefruit sized,” but it was found to be non-cancerous and so she waited to have it surgically removed after the soccer season was over.
After that, she figured her troubles were over.
Then, the day she was to sign with the Dayton Flyers, her mom was contacted by doctors at Cincinnati Children’s Hospital Medical Center who said Alex’s three-month checkup had revealed the tumor had grown back just as big as it had been.
“It was my special day and I was super excited, so my mom didn’t tell me until a few days later,” Alex said a few mornings ago as she sat in the players’ lounge next to the Flyers team dressing room.
With that quick recurrence, it was decided surgery wasn’t the best way to deal with her situation. And so she ended up starting an intense chemo treatment — Pazopanib — just two days before she left home for the UD campus as a freshman in July of 2016.
During that first chemo session – “It’s harsh, but it shrinks the tumor,” she said – she lost 18 pounds, leaving her a waif-like 5-foot-4 ½ and 102 pounds.
She played in the Flyers first four games as a freshman — even scoring a goal against Marshall — but as side effects like fatigue and nausea intensified, she ended up sidelined for the rest of the season.
Now, as you look back over her first three seasons of UD soccer, you see a career interrupted by nine surgeries, 36 months of chemo, myriad medical challenges and overwhelming side effects.
Through it all she labored on, saying little about her medical issue to her teammates, classmates and sometimes even her housemates.
“For a long time I downplayed it because I didn’t want people to feel bad for me or look at me differently,” she said. “I wanted to be normal.”
Other times she’d try to soften the conversation by wrapping it in a joke and a laugh.
Mostly, she now admits, she didn’t want to address the situation in her own mind:
“For a long time, if I just said the word tumor, I’d cry.”
It wasn’t until the past year that she began to speak openly about her medical issues.
When her Flyers team hit a rough patch last season and Golz gathered players and asked them to speak from the heart, Alex shocked everyone and — as a way of challenging some uninspired play on the field — talked about the challenges that kept her from playing.
And when the NCAA asked UD if it had any student athletes with inspiring stories, the soccer coaches suggested Alex.
She spoke with heartfelt honesty on a stirring, school-produced video that has become especially popular on the various social media platforms of the NCAA and UD.
As of Friday more than 34,000 people have viewed the 10-minute film.
She and her mom — “She’s my best friend,” Jamie Powell said of her 21-year-old daughter — have launched The Rare Disease Family Foundation, a grassroots effort to help families with some everyday needs while they are going through a medical crisis with a child.
As Jamie put it: “Somebody told me once that, sooner or later, when someone has a tragedy, there comes a point when they stop crying about it, they stop living it and they just become their story.”
‘She learned to survive’
Alex said she’s always had to beat the odds:
“When I was in the eighth grade, I was like three feet tall and everybody else was 5-foot-4. And I weighed like 40 pounds less than the rest of them.”
Jamie agreed:“She was always the tiniest of tiny out there on the soccer field. But she learned to be smart and quick. She learned to survive.”
And those same traits soon would fuel her ongoing medical fight.
Initially, though, she admits she was thrown for a loop.
After the first MRI discovered a mass in her shoulder, doctors brought her back a couple of days later for a biopsy.
“When they said they were going to check if the tumor was cancerous, I started freaking out and crying,” Alex said. “I was like, ‘What do you mean?’
“And they said, ‘Well you knew there was a mass.’ But I guess for me it was ignorance was bliss. I hadn’t thought a mass was the same as a tumor and I hadn’t thought it might be cancer.”
Once she found out the rare desmoid tumor was not cancerous, she was lulled into a false sense of relief and even denial.
She concentrated on college and felt good about coming to UD.
She said Mike Tucker, then the Flyers head coach, had been the only college coach who had not made an issue about her size. He was more impressed with her scrappiness.
And she’d need that moxie when her tumor proved to be especially aggressive.
Along with a milder form of chemo she’s taken daily for years now, she would undergo three sessions of the Pazopanib and all the numbing side effects that come with it. Always fatigued, she’d labor walking to campus and going up stairs and she’d fall asleep in class.
There was nausea and intense migraines and once when doctors were working to expand the motion in her right shoulder, her ulnar collateral tendon (UCL) pulled a piece of brittle bone off her elbow.
“I spent six weeks in a big bulky brace for my broken elbow after that,” she shrugged.
She said she has been forced to take pain medication daily for four years:
“I took oxycodone and hydrocodone every six hours for two years and then I switched to methadone.”
To combat the intense nausea that came with her latest session of chemo early this year, she began to wear scopolamine patches that are meant as temporary treatments to vomiting or motion sickness.
“I got violently ill when I tried to stop using them,” she said. “I had gotten addicted to them and had to go in detox after that. “
She also was put on anxiety medication and finally she said: “I was just not in a good mental state. I was anxious. I was depressed.
She said after working with a therapist, switching to a new milder medication, a new no-glucose, no-dairy diet and getting regular neuromuscular massages and some other treatments, she finally feels more like her old self.
“I’m 3,000 times better right now,” she beamed.
A couple weeks ago Golz met with her and her parents to address her upcoming senior season.
Although each year she had tried to push herself through the crushing medical side effects and get herself in shape to play, Alex’s physical condition has kept her from taking the field since those initial four games as a freshman.
Golz was truthful with her. He said her compromised physical capabilities no longer made it possible for her to play Division I soccer and she was causing herself undo stress trying to push herself back to that level.
Inside she knew that too and finally she and her parents and Golz came up with an agreement.
She would still be an active, scholarship member of the team — she’d be at all practices, team meetings and games — but she would have other duties besides playing.
One would be reaching out to teammates who were dealing with issues or struggles themselves.
Alex said she felt “relieved’ after the meeting.
Golz was, too:
“Everybody here wishes, she wishes, we all wish she could fully recover and make a triumphant return to the field. But sometimes reality forces you to take the situation as it is and continually adapt and address the needs that matter most.”
Support from UD
Jamie Powell said UD was the “perfect place for Alex to end up.”
It was close enough to Cincinnati Children’s where she said she has received wonderful caré and on the UD campus she’s found support on several fronts.
“The physical therapy she gotten there, we never could have paid for it elsewhere,” Jamie said. “They’ve literally worked on her body five, six, seven days a week.”
Golz said “the academic folks have been incredible with her and I know the coaching staff appreciates her.”
Jamie especially commended Golz, who took over the job from Tucker three seasons ago:
“Alex was recruited by Coach Tucker. Coach Eric has never seen her play and really never even seen her practice healthy. But he never doubted her, never questioned her. He never made her nervous about her scholarship. He just cared about her well-being.”
A big part of Alex’s support team has been her parents, dad Jan and especially mom, Jamie. who has gone to every doctor’s appointment with her.
And Alex said her boyfriend, former Flyers football player David Leisring, has been “really understanding and supportive,”
The person, though, who deserves the most credit is Alex herself.
“She’s so strong,” Jamie said. “Nothing fazes her. She refuses to let it change her.”
Alex smiled when her resolve was mentioned:
“Just being able to know I did what I wanted to do – I stayed on the team when a lot of other people may have quit – that’s important to me. I proved to myself I could hang in there even when I felt horrible.
“Now I can say, ‘Yeah, I had a desmoid tumor and had to do chemo drugs, but it didn’t stop me, I still played Division I soccer.
“That makes me proud.”
And now, like her mom said, she’s able to change the narrative. She’d using her story.
The video has drawn a lot of response, although she admits she still gets “red-faced” when people come up and gush that she is “an inspiration” to them:
“It feels kind of awkward.”
She feels better about the people who have reached out to her — many of them complete strangers from across the nation — saying her story has helped them in their own health battles.
The foundation she and her mom began in March already has had a couple of fundraisers in Cincinnati and two more are scheduled at her old high school. (To find out more or donate go to: rarediseaseff.org)
“We want to give a break to families who have kids with rare diseases,” Alex said. “We just want to provide a little relief: a spa day, a zoo day, tickets to a game, maybe dinner at a restaurant.”
The first person to get help from the foundation will be Madison Lovett, the 14-year old Miamisburg High freshman who has been an honorary member of the UD women’s soccer team thanks to Team IMPACT, the non-profit organization that pairs children and young adults facing serious and chronic medical issues with college athletic teams.
Madison was diagnosed eight years ago with Ehlers Danlos Syndrome, a connective tissue disorder.
A premed major, Alex plans to become a nurse practitioner working in pediatric oncology.
As her mom put it: “I think she’ll have a great career. She’s going to help lot of people one day.”
In truth, in so many ways, she already is.
She’s shown, as Golz said, she is “unbreakable.”
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