Treating Kids' Cancer With Science And A Pocket Full Of Hope : Shots - Health News Lessons in optimism from very ill children inspire pediatric oncologist Jim Olson in his hunt for better treatments for brain tumors.

Treating Kids' Cancer With Science And A Pocket Full Of Hope

Treating Kids' Cancer With Science And A Pocket Full Of Hope

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Dr. Jim Olson meets with Carver Faull at Seattle Children's Hospital in August. Carver, now 12, had surgery to remove a brain tumor in 2012. Matthew Ryan Williams for NPR hide caption

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Matthew Ryan Williams for NPR

Try to imagine someone who is supremely calm while at the same time bursting with energy, and you've got a pretty good idea of what Jim Olson is like.

He's a cancer researcher, physician, cyclist, kayaker and cook, not always in that order. He approaches each activity with incredible passion.

But to really understand Olson, you have to watch him in action with patients.

My remarkable visit with him, a part of my series, "Joe's Big Idea," begins on the top floor of Seattle Children's Hospital. It's a Wednesday, pediatric tumor clinic day, and Olson is zipping down the hall while I try to keep up. We enter a small, windowless room where the pediatric cancer team gathers before seeing patients.

Olson checks the chart of Carver Faull, a 12-year-old boy with a medulloblastoma, the most common type of pediatric brain cancer. Carver had surgery about 15 months earlier to remove his tumor. He's just had an MRI scan.

"This is his first brain scan after his therapy, and it's always a nerve-wracking one for the families to be wondering what it's going to look like," Olson says.

Olson studies the scan for a few seconds, then heads down the hall and walks into an examining room. That's where Carver, his hair slicked into a mohawk, is sitting quietly on a stool next to his mother.

"We have really good news for you," Olson tells them. "No brain tumor." A nurse has already leaked the good news, so while Carver and his mom are pleased to hear it from Olson, they're not surprised.

But as good as the news is about the cancer, Carver, still has serious health problems. Olson plops down on a stool, and scoots it a little closer to Carver. When he speaks to the boy, his tone is gentle but direct — man-to-man.

"So since your last visit here, what are the things you're most worried about?" Olson asks.

"I guess what people think of my eye," Carver says, in a quavering voice. His words come slowly. "And, um, maybe I won't be able to run and jump like everyone else." Carver pauses for a few seconds. He looks like he's trying to remember something. "Sorry, what was the question?" he asks.

Brain surgery didn't dampen 12-year-old Carver Faull's sense of humor or love of bad jokes. "What do you call a boomerang that doesn't come back?" he asks. "A stick!" Matthew Ryan Williams for NPR hide caption

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Matthew Ryan Williams for NPR

Carver has short-term memory loss. He has eye problems. He has walking problems. None of these issues was a result of his tumor. They were all caused by the surgery that successfully treated his brain cancer.

The surgeons didn't do anything wrong. The problem is that right now, to cut out a medulloblastoma, surgeons must splay open the brain to find exactly where the malignancy is. And that exploration itself can cause brain damage.

Then, once they find the tumor, they want to remove all of it. But cancer cells don't look all that different from healthy brain cells, so inevitably surgeons wind up removing some healthy brain tissue, too.

To try to avoid these sorts of problems in future patients, Olson and his colleagues have been working on a substance they call Tumor Paint. It's a molecule that consists of two parts. One is a protein that can go into the bloodstream, and all by itself find a cancerous tumor. The other part is a fluorescent dye, so when a surgeon shines a light on the tumor, it glows. The hope is that painting tumors will allow surgeons to more easily distinguish malignancies from healthy tissue, so that operations can be less invasive, and less damaging.

It's taken Olson more than a decade to transform the paint from an idea into reality. He's had preliminary success with animals, and studies in human patients are set to begin later this year.

Project Violet

Jim Olson's latest passion is something called Project Violet. It's his attempt at an entirely new approach to drug development.

Here's how it's supposed to work. Let's say you're trying to find a new drug to fix a problem in the kidney. Traditionally, Olson says, researchers first look for a molecule that repairs the problem in kidney cells growing in a lab dish, and only after they have that in hand, try to find a way to deliver that compound to an ailing kidney in a patient. But getting the compound to the target organ is where many promising drugs fail, Olson says. Many are broken down or provoke an immune reaction before ever reaching their destination.

So, instead, Olson's trying to develop a catalog of compounds that target particular organs — like the kidney or the lung — without regard to what the medicines do once they get there. Then researchers who've turned up promising treatment molecules could hitch them to one of Olson's compounds for delivery to the right organ.

Rather than rely on funding from the National Institutes of Health, drug companies, or other traditional sources, Olson plans to go straight to the public to raise money for Project Violet. Crowd funding reflects the populist approach he wants to take with his research, Olson says. Project Violet takes its name from Violet O'Dell, one of Olson's former patients, who died from brain cancer.

"There are buildings named after wealthy donors, and stadiums named after corporations. And I wanted this huge, important scientific program to be named for a 10-year-old little girl who grew up in a single-wide house trailer out in Sequim, Wash.," Olson says. "Because it's the kids that inspire the work that we're doing."

This video describes the project — and Violet O'Dell.

Later on, back in his office, Olson tells me more about treating these desperately ill children. And that's when I start to really understand what drives Olson forward — in his work, in his life.

Too often, he says, he has to go into a room and say to anxious parents waiting for news about their child's tumor something like this:

This is a tough cancer to treat. We can't do surgery, because of its location; this cancer doesn't respond very well to radiation, and it doesn't respond very well to chemotherapy.

And that's the easy part of the conversation. What too often comes next is heartbreaking: "This is a tumor that's going to take your child's life, more than likely sometime in the coming year."

Olson says he is sick to death of having to say this. Sick of seeing the devastation on people's faces. Sick of feeling helpless.

And he's made it his life's goal to change things.

Olson draws inspiration and strength from his patients and their families. His decision to work with kids, he says, goes back to something that happened 25 years ago when he was still in training. A 7-year-old girl he was caring for died, and the loss tore at his heart. But his reaction was complicated.

"The night that she died I was walking home, and I was almost skipping or dancing," Olson says. "I was really light, and I was singing and humming out loud. Neither of these things is typical for me. And it was so absurd to me that this really profound event had happened that day, and I was feeling so opposite."

So he sat down on a bench and tried to figure out what was going on. It didn't take him long to realize his mood had to be related to a conversation with the girl's parents. He'd assumed that after their daughter's death, they'd want to get as far away from the hospital as possible. But, no.

"They actually tracked me down, and came up and gave me a beautiful warm hug," Olson remembers. "And they said, 'Her death to us was as beautiful as her birth, and the reason for that was because of the words you shared with us as we went through this. And we just want you to know that you have a gift, that when medicine doesn't go the way you want it to, that you can still help families recognize a life doesn't have to be 90 years [long] to be beautiful.'

"And so I sat there and thought about that for a long time, and I realized that this was a gift that I had," he says. "And not many people would recognize the gift, or have it or want to share it. But for me it felt like a calling of sorts."

Olson tore up the applications he'd written for other medical specialties and committed himself to pediatrics. Yet, he also wanted to do research. So he wound up going to the Fred Hutchinson Cancer Research Center in Seattle, where he could practice medicine and be a scientist, too.

In the past 20 years, or so, Olson has cared for hundreds of children with brain cancer. Though many have survived, many haven't.

Six-year-old Hayden Strum, in 1998, with Dr. Jim Olson. Hayden, who died of cancer, was a charmer who had a way of "collecting hearts," his mother says. Courtesy of Kathleen Strum hide caption

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Courtesy of Kathleen Strum

Six-year-old Hayden Strum, in 1998, with Dr. Jim Olson. Hayden, who died of cancer, was a charmer who had a way of "collecting hearts," his mother says.

Courtesy of Kathleen Strum

Olson says he mourns the loss of every child. But he doesn't see tragedy in the death. Instead, he sees beauty in their lives. It's a perspective he learned early in his career from one family that lost a child. Kathleen Strum first brought her son Hayden to see Olson in 1994 when he was 2 years old.

"Hayden had a way of, as we say, collecting hearts," says Strum. "He was a very charming little guy. He would run into radiation every day and say, 'Here's me. It's my turn, it's my turn.' "

Strum says Hayden's illness taught her that when your child has brain cancer, you can't put anything off to tomorrow. You have to try to make each moment magic.

For example, one day there was a rare snowstorm in Seattle. Hayden and his older brother Gunnar wanted to go outside and have a snowball fight, but Hayden was too weak to get out of bed.

There was a big window in Hayden's room, and Strum says that gave Gunnar an idea.

"Gunnar says, 'I know, I'll go outside and I'll throw snowballs at the window.' And we had play dough. 'You throw the play dough at the window.' So I watched my two little boys have this play dough/snowball fight through the window. It was beautiful," she says.

As Olson watched how this family dealt with cancer, he realized something fundamental. For children facing death, enjoying life — taking in all that life has to offer — means something very different than most adults imagine.

"A child who is going to die from their cancer isn't mourning the high school prom they're not going to get to go to," Olson says. "They're not mourning the fact that they won't drive their first car. For a child, it's, are they happy? Are their parents happy? Are people crying in the room? Is a cute dog going to come in and visit them at 2 o'clock in the afternoon? It's all about that moment, that day."

Olson remembers the day he had to tell Kathleen and her husband that Hayden's tumor had come back, and it was going to take his life.

"Their response to that was remarkable," Olson says. "I went up to see how they were doing, about 20 minutes later, and Hayden was lying in his bed. His parents were on the other side of the curtain that separated his bed from the rest of the ICU. And they were saying to Hayden, 'This is just like when you're going to be dead. I'm still here, you're still there. We just can't see each other.'

Hayden Strum (left) with his older brother, Gunnar, and their mom, Kathleen, in 1998. Courtesy of Kathleen Strum hide caption

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Courtesy of Kathleen Strum

"Then they would open up the drapes," Olson says. " 'See, I'm still here, you're still there.' Close the drapes. 'See I'm still here, you're still there. That's what it's going to be like after you die.' And I've never seen a family do such a beautiful parenting move in my life."

How do such emotionally wrenching experiences affect Olson as a scientist? He knows he's not going to find a cure for cancer tomorrow.

"I don't wake up each morning saying, damn, we failed again. There are no more kids surviving today than there were yesterday," he says. Feeling that way would be a burden too heavy to carry. He says it would make him less creative, less productive.

And he has no trouble explaining where the strength to keep at it comes from. "There's nothing more powerful to drive you forward than to walk into a room with no real hope in your pocket," he says.

Above all else, Olson's an optimist. "The work that we're doing," he says, "can change the world."

This story was produced by Rebecca Davis.