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Portage Central honors freshman Sophie Varney for fight against inoperable brain tumor with first varsity start; ‘I’ll probably remember it forever’

By: Matthew B. Mowery, May 15, 2019, 2:00 pm

KALAMAZOO — If there’s anyone in the world that would be overjoyed to come to a practice, it’s Sophie Varney.

Compared to the alternative, the three hours daily in the car, slogging back and forth from C.S. Mott Children’s Hospital in Ann Arbor for radiation treatment on an inoperable brain tumor, practicing the game she loves seems positively wonderful.

So was the news shortly before the season that her tumor had shrunk 18 percent, and that she’d be able to play her freshman season on Portage Central junior varsity team.

And Tuesday’s surprise, when she was elevated to varsity for the rest of the season, and would be starting the second game of a doubleheader against Kalamazoo Loy Norrix, on Western Michigan University’s Ebert Field? 

You have no idea the joy.

“I’ll probably remember it forever,” Varney said after the game, which was played in specially designed jerseys with #SophieStrong on the back, dedicated by both teams to her fight. “I did not expect any of it. I’m just really happy that all these girls are behind me, and all of them are there for me. … They’re all really good friends, and I’m glad they’re behind me in the fight.”

 

“Step up to the plate, dig in, stay focused and fight.”

It’s a fight that officially started late in December, when the Varney family got the diagnosis of DIPG — Diffuse Intrinsic Pontine Glioma, the same type of tumor that claimed the young life of Lloyd Carr’s grandson, Chad Carr, four years ago — and immediately began treatment.

To say that the outlook for someone diagnosed with DIPG is grim is probably understating it. According to DefeatDIPG.org, only 10 percent of children with that type of tumor survive for two years following their diagnosis and less than one percent survive more than five years. Median survival time is around nine months.

“It carries a particularly grim prognosis — six months, really, unfortunately,” said Sophie’s mother, Kim, who said it’s “like a gut punch every day” and that it’s the first thing she thinks of in the morning, and the last when she goes to bed. “But she’s cleared to play, and she’s taking an experimental drug that we hope keeps the tumor at bay. We just keep swimming. For now, she looks good and she feels good, which means, for DIPG, that’s a win. And as long as she feels well, that means the tumor is stable.”

Sophie Varney is the sixth patient nationwide to be on the experimental drug — ONC-201 — and radiation concurrently, and there have been positive signs. The tumor, already one of the smaller ones the staff at Mott had seen, had shrunk 18 percent by the first MRI after treatment. 

Her next MRI was scheduled for Wednesday.

“And we expect to see another improvement, just because her vision has improved, and she feels good,” Kim Varney said. “She feels great, and we keep swimming.”

That’s been Kim Varney’s motto.

Sophie’s dad, Mark, had his printed on the back of the T-shirt he wore to Tuesday’s event: “Step up to the plate, dig in, stay focused and fight.”

That’s really all they can do at this point.

“That’s it. Yeah. We really don’t have any other alternatives at this point. This is a good time in the history of the world to have this illness. It’s been traditionally an invariably fatal tumor. You know Chad Carr had it. But they have an endowed research program at U-M that has been pretty devoted to this type of tumor, and they developed a drug — the first drug ever in the history — that is helping some people. Good news so far,” Mark Varney said. “We’ve got some nice family trips planned for this summer: She’s got one with her mom, and one with myself out west. So we’re just really looking forward to her being healthy through that time, and kind of enjoying this.”

 

Saved by softball

To say that softball has been one of the biggest factors in Sophie Varney doing as well as she is wouldn’t be inaccurate. 

Especially since the initial concern came up during travel ball, when her coach, Jim Meduna, noticed that she was cocking her head to the side when she would bat and throw. Then there was the double vision. 

Meduna urged Varney’s parents to get her checked out.
“She plays year round, because of the level she plays at, and he noticed just a turn of the head, and pushed me to get her in, and that’s how we found the tumor,” Kim Varney said. “We were diagnosed on Dec. 20, and started going to Michigan on Dec. 20. Like that day. We busted over there.”

Doctors began a 30-day radiation treatment the first week of January, and it wrapped up just a week before tryouts began. At that point, though, nobody was sure if she’d be able to play at all.

“For softball-wise, when they said I should not play for a little bit, and then right before the season, they let me play, I was glad, because I was trying not to let it stop me from doing anything,” Sophie Varney said. 

That’s the type of attitude that she’s kept throughout.

“Well, when you think about it, we were traveling back and forth to Ann Arbor every day, at 2:30. We’d bust over there for a 4 o’clock treatment, and then two hours back, in time for dinner. So instead of four hours in the car every day, she’s practicing for three hours. I mean, she’s right in her element. I feel like when you look at car ride vs. practice, she’d just as soon train every day,” Kim Varney said. “This is like where I think she feels at home.”

That attitude hasn’t been lost on her teammates, either.

“She’s definitely leaning on softball to get her through this, and we’re all standing behind her to get this done with her. … She’s a very positive person. You’d think she’d come to practice ‘Oh, bummer. This happened at my treatment today.’ But she comes in, and she’s ready to kick butt. She works hard, just like the rest of us. She’s always so happy,” said senior Becca Cottrell. “She would come from treatments, right over to practice, or she’d miss a practice and she’d come in and work harder the next day, just to get that much better, to be with us, and play with this team. …

“We appreciate Sophie so much. She’s the smile of this team. She’s always been so positive, and we love having her around, so this was just the best way to honor her.”

It’s amazed her parents, as well.

“Obviously the first couple of weeks of her illness were really difficult. And I think, one of the things she had said early was she was most upset about how upset I was. But when you think about it then as a 14-year-old, kind of how they view this, and their understanding of mortality — it’s just amazing,” Mark Varney said. “And I really, really don’t know — I’m just amazed all the time that my kids have adopted such a tremendous spirit. And I sometimes don’t know where it comes from.”

 

Finding a way to honor Sophie

After the interminable trips back and forth to treatment, a start to the season where she was able to play was a huge emotional lift for the freshman. 

“She’s got a little bit of double vision. It comes and goes, but she focuses extremely well. She tells me she knows which one (to hit),” Mustangs coach Lisa Kiino said. “I’ve trusted her, and we’ve gone with it ever since the beginning. I told her ‘You’ve gotta be comfortable. Let’s both be comfortable with this.’ And not one time has she made me nervous or worried.”

For most of the season, she started on Portage Central’s junior varsity squad, playing shortstop and leading off.

"She’s playing really well. I guarantee you would not know she has a brain tumor, if you didn’t know,” Kim Varney said. “She’s been contributing. She’s a little force.”

On days like Tuesday, facing an opponent without a junior varsity team, Sophie was among those JV players called up to varsity as a substitute. 

Tuesday’s game had a bit of a twist, though. 

Central’s seniors got together, and wanted to figure out a way to honor their freshman teammate that had been so diligent in her efforts to help the program.

“Our seniors wanted to put something together for her, and because of the type of kid she is, we wanted to honor her, and not do some sort of charity event — even though those are fantastic. She’s been at every practice, she’s been at school every day. She has not missed one time. She has a great attitude, never complained about anything. So we wanted to celebrate her 2019 season,” Kiino said. “Actually, all of my starters, my seniors, offered their spots, because they wanted her to play at some point this season. We started talking about it a couple of weeks ago, and they put this together.”

The plan was for Kiino to announce between games of Tuesday’s doubleheader that Sophie would be getting her first varsity game action. 

Keeping it a surprise wasn’t easy.

“It was a little tricky. She was asking questions all week long, like ‘Why is the JV coming? What’s going on?’” Cottrell said. “But we’re glad we kept it a secret, and she was surprised.”

Sophie didn’t know until the lineup was announced that she was starting, batting eighth, and playing in right field.

“I had no clue any of this was going to happen,” she said pregame. “I’m a little nervous, but I’m ready. Gotta be ready, right?”

She was.

First-pitch swinging, she laced a single to right field to help start the Mustangs’ seven-run second inning, eventually scoring on a wild pitch. Her second time up in the inning, she made it all the way to third on a three-base error. She walked in her third plate appearance, and scored all the way from second on a dropped pop-up on the infield with two outs. 

 

Grateful for the support

As part of the ceremony between games, the Varney family — Sophie and her parents — went out to the pitcher’s circle, as the public address announcer explained the import of the game.

“What do you say? It’s been a whirlwind in the last six months, of course. There have been great sunny days, like today, and some pretty dark days. Really, I guess it was nice when we got out there in the sun, with Sophie and her mother, that we could kind of celebrate her success so far in her treatment,” Mark Varney said. “She’s doing well, and she’s healthy — that’s what I was thinking about most of the time on the pitcher’s mound, what a blessing it is that she’s healthy right now, and she can play. She’s been a competitive softball player for many years, and for one, to make the varsity team as a freshman is a big deal, and for her to have a hit, and some good contact, and some smart softball out there was really nice to see.”

The extent of that support certainly hasn’t been limited to just Tuesday’s event. 

It’s been ongoing throughout.

Sophie will be taking a cruise this summer with her mom and brothers, thanks to Make A Wish Foundation, and her aunt, Gwen Thompson, set up a GoFund Me to raise $7,500 to send Sophie and her dad on a trip out west to see Mt. Rushmore, Yellowstone Park and the Grand Canyon. It blew past that mark, raising $8,700.

“It’s been incredible. When it first kind of started coming up, we were kind of struggling with that, kind of organizing this, as a family of divorced parents, and how we were going to do that. What really came through strong, especially for me, recognizing and understanding how people give in different ways,” Mark Varney said. “People know how to give in the way they know how to give. And for some people, that’s a spaghetti dinner they bring over some night, for some people that’s a gift card, or that was offering to drive over to Ann Arbor with us when we were going over there. For some people, that was to support our family’s journey through this. That’s what I’ve appreciated, just the sense that people give in their own family’s tradition. We just honor and accept that as it comes.”

It’s been humbling for Sophie, too, to see the support coming from everywhere. 

“The community has shown a bunch of support — like people I don’t even know have showed support, and I just think that’s amazing,” she said. 

Asked what she would want people to remember from the event to honor her, she thought about it for a minute.

“I just want people to remember how supportive everyone is, how great it is to have all these people here,” she said.

 

[EDITOR’S NOTE: Highlights and interviews from Tuesday’s game will appear on the State Champs! High School Sports Showat 9 a.m. Sunday on Fox Sports Detroit.]