Tough as leather, this daughter of Montana and St. Jude cancer survivor is a lesson in perseverance

SIDNEY, Montana — Her middle name is Rein.

“R-E-I-N, like leather,” Cedar’s mom, Tana, said. “I always say, ‘Well, she was very aptly named,’ because she kind of had to be tough as leather for a few years, to get through what she did.”

Tana was talking by phone from the family’s home outside Sidney (Pop.: 6,173), in eastern Montana, just a few miles to the North Dakota state line, and a few more to the Badlands. It’s ranching country, cowboy country, beautiful but tough, a place where you grow up riding horses, and where rodeo — you know, barrel racing, goat tying and the like — is a high school sport.

Cedar — along with her twin brother Wacey, “an old cowboy name,” mom said — starts high school in the fall, and she’s planning to compete in rodeo. She’s also a basketball player and a cross-country runner, loves to ride horses, has performed in a couple of school plays, is involved in 4-H, shows market steers, has a bee-keeping project going, exhibits her own leatherwork and photography, and is looking forward to learning how to drive.

It can all be a little harder for her, because of what she went through — retinoblastoma, cancer in her right eye, diagnosed at about 18 months. The eye was saved, thanks to treatment at St. Jude Children’s Research Hospital, but she doesn’t have any central vision in the eye and her limited peripheral vision is often double or blurry.

Imagine learning to drive, or trying to protect your dribble on the basketball court, with one good eye.

Cedar, 14, doesn’t have to imagine. It’s all she’s ever really known. Lucky for her she’s tougher than most, and always has been, this High Plains girl whose middle name comes from the word for the leather strap in a horse’s bit — or a verb meaning to guide or control.

That’s Cedar, who can stick up for herself, and others, just fine: “It really gets me mad when other kids make jokes about cancer, and I tell them to knock it off. Because I know the pain that they” — kids with cancer — “have to go through.”

Asked if she’s always been a tough kid, she said, “Yeah,” then paused before continuing. Tough is as tough does, after all. It’s not something you sit around talking about, when there are horses to ride.

Finally, she said: “I mean, I don’t cry when I fall down or anything, if that’s what you mean.”

You know how eyes show up red in photographs sometimes?

When Tana was taking pictures of her third child — twin brother Wacey is older by a minute, and big sister Trista by four years — she noticed a yellowish shine in Cedar’s right eye.

“Every picture, that eye would shine back at me,” Tana said. “And we had noticed, from the time she was a few months old, that eye would drift.”

Tana didn’t know it, couldn’t know it, but whenever she looked at a picture of her baby, cancer was staring back.

The diagnosis was made when Cedar was a year and a half old, initially but not officially by an ophthalmologist in a town about 50 miles away. He didn’t want to say the word, because he’d never actually seen the disease first-hand — it’s rare, accounting for only about 3 percent of all childhood cancers — and couldn’t be sure.

“I said, I’m the type of person, tell it to me straight,” Tana said. “Even if you’re not sure, I need to know what you’re thinking, so that I can get my ducks in a row. ’Cause normally I don’t have ducks and they’re not in a row. I generally have squirrels, and they’re everywhere.”

So he said the word: retinoblastoma.

And so it began. The diagnosis was confirmed, and treatment begun, at a hospital in Minnesota. Almost immediately, a decision had to be made: Enucleate (remove) the eye, spare Cedar from chemotherapy, and fit her with a prosthetic. Or, try to destroy the tumor and save the eye.

Tana said she and her husband, J.J., were at a loss to decide, because there were downsides to both options. So she asked a conference room filled with 19 doctors — she remembers the exact number, but can’t remember why — what they would do if Cedar were their daughter.

So the decision was made to treat the tumor, and the doctors in Minnesota were successful through six months of chemotherapy. But still they hadn’t managed to destroy the tumor, telling the family they didn’t have the necessary laser.

Then they added the words that would change the course of Cedar’s treatment, and her life:

But St. Jude does.

Ask a patient or family member about treatment at St. Jude and they’ll talk mostly about how they were treated. As in, like family.

Tana talks about how the doctors and nurses and even shuttle drivers got to know and love and appreciate little Cedar.

“She thought she was a celebrity when she would roll into Memphis,” Tana said. “She’d walk around there all sassy, like she was queen bee in that place. But that’s how they make those kids feel. They do. They just make them feel so special and help them forget why they’re there.

“You get through the appointments — you get through the things you have to do — but then there’s the fun things.”

Cedar loved petting the therapy dogs. “And I’m not going to lie,” Tana said. “I love the therapy dogs, myself. I’ve been on the floor with them, too. I’m a big kid.”

Mom made good friends, friends she still has, and also had great little moments with perfect strangers, moments that brought joy where there might have been despair, for a mom and her sick little girl, some 1,500 miles from home.

Like the volunteer, “a lovely man from Ireland,” who sat down with Tana and Cedar on their first trip to St. Jude, and struck up a conversation.

“He was telling us about his life a little bit,” Tana said. “I said, ‘Do you know where Ballyhooly, Ireland, is?’ He said, ‘Oh, yes. I absolutely know where Ballyhooly is.’ I said, ‘Our family priest grew up in Ballyhooly, and his little place that he lives on, about six miles out of town, he’s named it his little Montana version of Ballyhooly.’”

Small world, isn’t it, when you can make a human connection, when you can laugh about a little thing instead of crying about a big one.

Tana never saw the Irishman again. She looked for him.

“But I thought, that’s OK,” she said. “He was there when we needed it.”

Cedar was tough but she was just a toddler at St. Jude. She was scared, too. Especially when she had to be sedated.

But a couple of things helped.

“They’d let me choose the flavor of anesthesia,” Cedar said. “And Mom would always be there to soothe me.”

The anesthesia was strawberry-flavored. Mom was whatever she needed to be. Because if Cedar needed soothing as she was being sedated, she needed something else — a target, someone to lash out at, to blame — when she was coming out of it.

“She would wake up from anesthesia and she was a bearcat,” Tana said. “Oh, she would just be on fire. And she would be so mad at me.

“Throw her shoes at me … yelling at me.”

Cedar said, “She says I tried to hop in the elevator with other families.”

They can laugh about it now, more than a decade later. But they have serious talks about it all, still. They had one recently, when Tana told Cedar:

“If there would have been any way I could have taken your cancer into myself … I would have without a thought. But I couldn’t. So I walked the journey with you, as well as I could. I was with you every step of the way. I was in every room with you, as long as I was allowed. I put everything on. I looked like I was walking into space. I put the suit on. And the booties and the hat.

“I would carry you down the hall, and you would be crying. And it tore out my heart. I would be sitting there and look in your eyes and talk to you and hold you until you fell asleep. And then I would walk away and go and sit in the waiting room and cry.

“Because it was the only way I could do it with you. Because I couldn’t do it for you, honey.”

Some people talk about the homogenization of America. They might want to get out more. Gas up the car and go out west, for instance, across the Badlands of North Dakota and into eastern Montana. Stop and get out and look around. Take it all in.

“It’s beautiful, and there’s so much wildlife,” Cedar said. “Sometimes you’re driving down the highway and you’ll see deer. And when we were just driving on that mile-stretch toward home, we saw some eagles circling above the hills.

“And you know, there are a lot of good people here. Good, hard-working, humble people. And that’s good to grow up around.”

Stop and talk to them. Hear their stories, see how they live, what they love to do. You may meet someone like Tana. She may tell you about how she and her husband both grew up in North Dakota, riding horses, moving cattle along. She’ll tell you about going to a one-room country school through eighth grade. “It was like real ‘Little House on the Prairie’ stuff,” she’ll say.

She’ll tell you about rodeo life — Cedar and Wacey’s big sister, Trista, just finished a decorated national high school career. She’ll tell you about J.J.’s work at the family’s vet clinic in town, about those 3-in-the-morning phone calls he might get for an emergency calving. She’ll talk about her leatherwork shop.

And she’ll tell you about the love in their community for St. Jude, because one of eastern Montana’s own was treated there. First name Cedar, middle name Rein. As in leather. A tough girl who loves it out there on the High Plains, wide open country where she can see, better than most people with two perfect eyes, the joys and possibilities of life.