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

Sep 13, 2013
Originally published on April 22, 2014 7:02 am

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.

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.

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.

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.'

"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.

Copyright 2014 NPR. To see more, visit http://www.npr.org/.

Transcript

STEVE INSKEEP, HOST:

Yesterday, we told you about a medical breakthrough that could make it easier and safer for surgeons to remove brain tumors in children. The man behind the invention that makes cancerous tumors glow is Jim Olson, and today as part of his series Joe's Big Idea, NPR science correspondent Joe Palca explores and motivation of the tumor paint inventor.

JOE PALCA, BYLINE: If Jim Olson invites you over for breakfast at his house in Seattle...

DR. JIM OLSON: Good morning.

PALCA: ...let me give you some advice: say yes.

OLSON: I hope it wasn't too much trouble finding it.

PALCA: No. Good morning. While the turkey sausage sizzles, Olson dashes out to the garden to pick some greens.

OLSON: Beet green, spinach, sometimes even lettuce, stir-fried quickly, and voila.

PALCA: Cooking is one of the ways Jim Olson takes his brain offline.

OLSON: It's so yummy.

PALCA: There's also kayaking and bike riding. For Olson, these aren't leisure activities. They're when his brain is free to think creatively.

OLSON: That's when the calculus is happening. It's not happening when answering email.

PALCA: And he gets a lot of emails - not surprising really. He runs a lab at the Fred Hutchinson Cancer Research Center, he's got two biotech companies and he's just launched an ambitious campaign called Project Violet to develop a new class of drugs for cancer and other diseases.

OLSON: We've got to run.

PALCA: Olson's work as a researcher makes for a full day, but that's not all. He's also a physician who takes care of kids with brain cancer. Later that day at his office, Olson told me more about treating these desperately ill children, and that's when I began to understand what really drives Olson forward. You see, too often he has to go into a room and say something like this to parents waiting for news about their child's tumor:

OLSON: 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.

PALCA: And that was the easy part of the conversation. What's next is heartbreaking.

OLSON: This is a tumor that is going to take your child's life, and more than likely sometime in the coming year.

PALCA: Olson 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 goals to change things. Now, if you're like me, at this point you may be wondering why someone would choose to go down this career path and decide to tackle something as devastating as pediatric brain cancer. Well, for Olson, it wasn't teachers and textbooks, it was the families he met early on in his medical career. His decision to work with kids goes back to something that happened 25 years ago when he was still in training. A seven-year-old girl he was caring for died. It tore at his heart and yet...

OLSON: The night that she died I was walking home and I was, like, almost skipping or dancing. I was really light. And it was so absurd to me that this really profound event had happened that day and I was feeling so apposite.

PALCA: 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 wanted to get far away from the hospital as possible. But no.

OLSON: They actually tracked me down and came up and gave me a beautiful warm hug and said her death 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 the medicine doesn't go the way you want it to that you can still help families recognize that a life doesn't have to be 90 years old 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 and that 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.

PALCA: He tore up the applications he'd written for other medical specialties and dedicated himself to pediatrics. In the past 20 years or so, Olson has cared for hundreds of kids with brain cancer. Many have survived but many haven't. Olson says he mourns the loss of every child but he doesn't see tragedy in their 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 Strumm brought her son Hayden to see Olson in 1994 when he was two years old.

KATHLEEN STRUMM: Hayden had a way of, what we say, collecting hearts. And he's a very charming little guy. And so he would run into radiation every day and say here's me. It's my turn. It's my turn.

PALCA: Strumm says Haden's illness taught her 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 Haden was too weak to get out of bed.

STRUMM: Gunnar says I know. I'll go outside and I'll throw snowballs at the window and - we had Play-Doh - he's throw the Play-Doh at the window. So, I watch my two little boys have this snowball-Play-Doh fight through the window. It was beautiful.

PALCA: As Jim Olson watched how this family dealt with cancer, he realized something fundamental: that for children facing death, enjoying life, taking in all life has to offer, means something very different than what most adults think.

OLSON: A child who is going to die from their cancer isn't mourning the high school prom that they're not going to get to go to, they're not mourning the fact that they won't drive their first car. For a child, it's about are they happy, are their parents happy, is a cute dog going to come in and visit them at two o'clock in the afternoon - it's all about that moment that day.

PALCA: 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.

OLSON: Their response to that was remarkable. I went up to see how they were doing about 20 minutes later and Hayden was laying in his bed. And his parents were on the other side of the curtain that separated his bed from the rest of the ICU, and they were saying, see? This was just like when you're going to be dead. I'm still there, you're still there; we just can't see each other. And then they would open up 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.

PALCA: This is so emotionally wrenching. I wondered how it affected Olson himself. As a human being dealing with death day after day, and as a researcher trying to do something about it. I mean, he knows he's not going to find a cure for cancer tomorrow.

OLSON: I don't wake up each morning saying, damn, we failed again. There's no more kids surviving today than there were yesterday.

PALCA: Feeling that way would just be a burden to Olson. He says it would make him less creative, less productive. As for the strength to keep at it:

OLSON: There's nothing more powerful to drive you forward than not wanting to walk into a room with no real hope in your pocket.

PALCA: And above all else, Olson's an optimist.

OLSON: The work that we're doing I think can change the world.

PALCA: Here's hoping. Joe Palca, NPR News.

(SOUNDBITE OF MUSIC)

INSKEEP: This is NPR News. Transcript provided by NPR, Copyright NPR.

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