Smyrna's Blessings: How One Teen Coped With Medulloblastoma
A brain tumor interrupted a girl’s plans for her 13th birthday, but she considers herself a better, happier person for what she’s lived through.
July 17, 2019 • 4 min
Akhila tells the story of when her daughter was born. In the hospital nursery, Smyrna was always placed last in the row of newborns — a little concerning for the new mom until she was told the reason:
“She’s very content. She doesn’t cry.”
And that was Smyrna’s nature, as a little girl growing up in America, the daughter of Indian-born parents. Cuts and scrapes didn’t even seem to bother her.
“My husband used to say, ‘Something is wrong with her. She doesn’t cry,’ ” Akhila says. “If she got hurt hurt, she would cry, but if it was just a scratch or anything, she would not cry.”
But nothing too terribly bad happened to Smyrna. She was growing up an especially healthy girl.
“Like, we live in Illinois,” Akhila says, “It’s very cold there. So when winter comes, most of the kids get the ear infections because of the cold weather. But with her, I never had any problems with the ear infections or anything.”
That is, until early 2018, in the months before Smyrna’s 13th birthday. Then came nausea and headaches, visits to the pediatrician, the neurologist, the emergency room. Then an MRI that finally solved the mystery. It was medulloblastoma, a type of brain cancer.
Now was the time to put Smyrna first. And here was the place: St. Jude Children’s Research Hospital.
A mother's blessing
It wouldn’t be just any birthday. She’d be 13, a teenager. There’d be a party and a pineapple cake, made from scratch.
“Oh, we had so much of plans on her 13th birthday,” Akhila says.
The brain tumor changed all of that, not that Smyrna grasped it all, initially. She knew she needed surgery — scheduled for May 2, 2018, at the St. Jude affiliate clinic in Peoria, Illinois — but she didn’t realize the nearly 10 months of treatment that would follow at St. Jude in Memphis.
“Yeah, I didn’t know that we would have to go through all this chemo and radiation. I didn’t think it was that serious,” she says now. “So, in my mind, Wednesday surgery, Thursday recovery, Friday my birthday party.
“But then Mom said” — Smyrna laughs at her pre-teen naiveté — “you’re not going to be able to have your party. I was like, ‘Are you sure? I think I can get home by the end of the week.’”
All these months later, sitting in a waiting room after one of her last appointments before leaving St. Jude to return home, it’s telling that Smyrna laughs when she talks about missing her 13th birthday party. And that when she talks about her most vivid memories of St. Jude, she doesn’t talk about the long months away from home, or the throes of treatment. About as painful as it gets is her first poke from a needle.
Otherwise, the memories that stick for Smyrna are of Child Life, the hospital program designed to reduce the stress and anxiety of patients by allowing them to play and express themselves, and the Teen Room, a place of video games, computers, art supplies — a place of normalcy, not hospital trappings.
Her memories are of St. Jude as a place that enabled her to ease into teenage life even as she was being treated for a life-threatening illness. A place where she met others who could understand her fears, celebrate her victories, speak her language.
As it is for the daughter, so it is for the mom.
“You know, I’ve met at least 30 or 40 medulloblastoma patients,” Akhila says. “I’d never heard that word before. But then when we sit here I talk to the people, ‘What is your son’s diagnosis?’ and ‘How did you come to know about it?’ Then I came to know how ignorant I was before. After I saw those patients, I came to know, wow, it was that serious. I understood later.”
So you didn’t realize how lucky you are now, to have your Smyrna back, without complications or effects from surgery or treatment, she’s told.
“Oh, no,” she says. “How blessed I am.”
Life lessons
Sometimes we think life is about birthdays and parties and pineapple cakes made from scratch.
And sometimes, it’s really that simple. But other times, life gets complicated and we have to find a new way through. We have to find strength we didn’t know we had, and lean on people we never knew we’d need.
“’Cause you never know,” says Smyrna, 13 and wise beyond her years. “I remember when I got diagnosed. I was supposed to go to school. I was just supposed to carry on as a regular kid. But then God took a hold of my life. And He said, ‘You need to slow down, ’cause you can’t just live like there’s no tomorrow.’
“But He has this plan.”
It has to please her mom to hear Smyrna talk like this, for Akhila is a woman of deep faith. She says things like, “Because, you know, I have an amazing God. In the midst of trouble, He’s going to be there.”
St. Jude has Smyrna back to her old sunny self. That’s obvious during a hospital meet-and-greet with visiting country singer Cale Dodds, as they navigate virtual-reality worlds in the St. Jude Imagine Room, just days before Smyrna leaves the hospital for home. Her smile is so constant the same word seems to be written on her face as on her shirt — Happy.
“I feel the same (as before the tumor),” she says, in a conversation a couple of days later. “If anything, I feel more happy. ’Cause there’s so many people you meet (at St. Jude) and the joy is just radiating. They love you, you love them. And they’re gonna stand by you until you’re done.”
Smyrna is asked how she describes St. Jude to her friends back home.
“The best.”
Actually, she says, they know that already.
“My friends come and visit all the time,” she says. “We’ve given them tours of Target House and the hospital, and they go, ‘Smyrna, it’s like you’re in a vacation home. You’re so lucky that you get to be here.'”
Or, as Akhila would say: Not lucky, blessed.