This doesn’t happen, not any part of this story, but there she was. There was Dr. Karen Pollok of Riley Hospital for Children, a cancer researcher who studies the tissue of kids she doesn’t know – kids she will never meet – approaching a front door in Carmel.
Dr. Pollock was about to meet a kid who’d donated his tumor, a kid with two weeks to live, a kid who wanted to know, before he was gone, what was happening under all those microscopes.
She was nervous, because this doesn’t happen. None of it. A kid from Carmel, Indiana, doesn’t start a worldwide movement by finishing a chemotherapy session at Riley in August 2017 and driving back to campus at Purdue, where he camps out before a Boilermakers football game and draws the attention of coach Jeff Brohm – from there embarking on a journey that would carry his name to the ends of the earth and back to Carmel, where it all started.
Where Dr. Pollok is about to knock on that front door.
She’s nervous, because she’s devoted her life to finding the cure for pediatric cancer, but she’s never done this. Never met a kid who’d asked his doctors, when they were removing part of his right arm and later part of his pelvis, to save some of the tumor and give it to someone like Dr. Karen Pollok to study.
Dr. Pollok enters the house with the oncologist, Dr. Jamie Renbarger, who heads the groundbreaking Riley Precision Genomics program. They walk into Tyler’s room, a converted den near the front door. They see Tyler.
And then they’re not nervous anymore. Because Tyler is making them comfortable, the cancer withering his body and shortening his breath but not touching his spirit. He’s asking Dr. Pollok and Dr. Renbarger about their research, the data, the next steps.
“Very smart kid,” Dr. Pollok says. “The kids we meet (at Riley), when they’re right there with you, we call it: ‘They have their lights on.’ You can see that sparkle in their eye. And Tyler’s lights were on.”
We’re here, today, because Tyler’s story didn’t end a year ago when he died on Jan. 1 at age 20. His story, his legacy, is growing.
Tyler Trent left a light on for us.
‘Best tumor ever donated to research’
Be careful with the word miracle. It’s a bit much, you know? Let’s not cheapen the effect when we get an honest-to-God miracle. And Tyler Trent’s story, his legacy, his impact, it’s not there. Not yet.
But give it time.
The tumors he donated, and he did this twice – they are called the TT1 and TT2 cell lines – left samples that are changing the way researchers see cancer, giving them insight into this insidious disease. The cancer that came for Tyler time and again is called osteosarcoma, and it can be brutal. Most of the time, bone cancer takes a kid early or it gives up. It doesn’t keep coming back, but that’s what the osteosarcoma did with Tyler. Well, that’s what he made it do, by refusing to give the cancer what it wanted.
That strain of cancer, that aggressive and unforgiving osteosarcoma, may have won the battle. But Tyler Trent might just win the war.
“They tell us Tyler’s was one of the best tumors ever donated to cancer research,” says his dad, Tony Trent. “It’s not really what you want to hear. But it was so aggressive and active and mutating that they’ve shipped it all over the country to other research centers. It thrives, it grows.
“It’s so encouraging. But it’s so bittersweet.”
As is this time of year. We’ll get back to Tyler’s impact on cancer research, but first understand how much the community continues to support the family, and the two reasons why: One, Tyler was that magnetic. But, two, as we were drawn into Tyler’s orbit, we discovered the strength of an entire family.
The support continues. Here’s one example: Colts analytics specialist Alex Romano, who had Tyler as an intern for all of one day last summer – before his cancer proved too painful – flew Tony and Ethan, Tyler’s brother, to New Orleans earlier this month to watch the Colts.
Here’s another: Christmas Eve at the Trent house. The doorbell rings at about 9 p.m. There’s nobody on the front stoop, just two big boxes of presents for Tony, Kelly, Blake and Ethan. Even gifts for Tyler’s grandma, a dear soul named Cathy. The box was signed: Christmas Commandos,a benevolent (and anonymous) group out of Michiana created in 1998 “to bring comfort and love to grieving families.”
No, this first Christmas hasn’t been easy, but the Trent family is moving forward. Blake’s at school studying to be a pilot, Ethan’s a budding teenage football star, and Tony and Kelly are tending lovingly to a legacy that has raised more than $2.5 million between their Tyler Trent Foundation, Purdue’s endowment and the Tyler Trent Cancer Research Endowment for Riley Hospital.
Meanwhile, at Riley and beyond, Tyler’s donation to cancer research is called “amazing.”
“It’s an amazing model,” says Dr. Pollok. “His tumors were so aggressive, and that’s why the model is so effective (to study), and because he donated at various relapsed stages. Those are the models we can really learn from.”
Dr. Pollok and her team at the Herman B. Wells Center for Pediatric Research, a division of Riley and IU Health, have isolated a chromosome amplification in Tyler’s TT1 and TT2 lines. They have inserted the samples into more than 60 mice – nobody loves that, but do you want someone to cure cancer or not? – and attacked it with two different drugs.
Drug 1, as they’re calling it, had modest success. So did Drug 2.
Both drugs, together? It stopped the tumor in its tracks, and did so without damaging the mice.
“These are novel combinations that are not used clinically right now,” Dr. Pollok says. “That’s how this level of research goes. You take a deep dive into the DNA profiles of a patient, and we say: ‘Here’s the best way to treat it.’ It’s so encouraging that we’ve been able to block the growth of Tyler’s tumor – and the combination wasn’t toxic to the mice. That’s one of the things Tyler had to deal with, the toxicity of his treatment.”
Right. Toward the end, Tyler had to stop taking medicine. Because if the cancer didn’t kill him, the medicine would have. But the samples he left behind have opened a door to researchers to work their magic with microscopes.
Speaking of microscopes …
Tony and Kelly Trent saw Tyler last month. They saw him under a microscope. And that kid, that miracle – I’m calling him a miracle – he was moving. They saw Tyler move.
What if Tyler Trent cures cancer?
First of all, this whole thing was Tyler’s idea. His parents didn’t suggest he donate his tumors to science. Neither did his doctors, his surgeons, his nurses – nobody. When Tyler went into surgery in May 2017 and again that August, he didn’t ask surgeons to save him.
Save the tumor, Tyler said. Study it. Find a cure.
“I didn’t know he’d done that,” Tony Trent says. “I’ve learned a lot about my son in the past year.”
All of it good. He learned that Tyler sent a private message to one of his best friends in a passage of the book he co-authored, an inside joke just to make the kid smile. He learned Tyler had been mentoring and supporting the staff at the student newspaper, the Purdue Exponent, where he’d covered the Boilermakers basketball and football teams he loved.
And Tony learned about the donated tissue. He learned because Tyler insisted on finding out what he could. Most of the time, researchers don’t know the identity of the patient they’re studying. HIPAA privacy laws and all that, which is why Dr. Pollok had never met a patient like Tyler. But exceptions are made when patients seek information and offer permission that sacrifices their privacy. And Tyler Trent, well, he was exceptional.
So the phone rings one day at their home in Carmel, and it’s someone at Riley saying researchers wanted to visit Tyler and his parents and tell them about the TT1 and TT2 tumors. It was news to Tony, but he’s learned to roll with it. Over the past year Tyler had inspired an upset of No. 2 Ohio State, spent time with Scott Van Pelt on ESPN and received the Disney Spirit Award on national television – along with a standing ovation from the finest players in America – during the 2018 College Football Awards Show.
Tyler had quietly donated tissue that was putting cancer on the run?
“That’s Tyler,” Tony says.
Tony and Kelly visited Riley in November to see the research with their own eyes. They peered into a microscope and saw their son’s cells, saw the movement, the life. Turns out, Tyler wasn’t the only brave one in the family.
“The courage his parents have shown,” Dr. Pollok says, “to be able to come back to the hospital and look into the microscope …”
She stops. What else is there to say? I’m asking Tony about those moments in the lab, about seeing his son in molecular form.
“It is …” he says and pauses. Something in his throat. He continues. “It’s hard. Knowing that your son, part of him, is alive right there. But he’s not with you. It was hard to see, but it’s encouraging. It’s so encouraging.”
I’m telling Tony what Dr. Pollok had said when I’d asked her, point blank, if someone – whether at Riley or elsewhere – was going to cure cancer someday. She was interrupting me before I could finish the question.
“Oh yes,” she’d said, flatly. “Oh yeah. Yeah. Everything that’s going on is moving in the right direction. It’s going to be early detection in combination therapies. …. Some of it may be like when you take (a pill), you’ll stabilize the disease. You can live with it. That’s where this is going.”
I’m telling Tony about that, and then wondering aloud: What if the cure comes from your son? What if Tyler is the reason they cure cancer someday?
“It would be amazing,” Tony says, and I’m scolding him about his verb tense.
Would be is a suggestion of “if,” I’m telling Tony. Will be, on the other hand, suggests “when.”
Tyler Trent’s dad corrects himself.
“It will be amazing,” he says. “It will be beautiful.”