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Tue May 6, 2014
Chemist Turns Software Developer After Son's Cancer Diagnosis
Originally published on Tue May 13, 2014 11:34 am
A scientist's ambitious plan to create an early detection system for eye cancer using people's home cameras is coming along.
Last fall, we told you about Bryan Shaw's scheme. He believes parents' cameras can reveal whether their baby has leukocoria, a white glow coming from the pupil when you shine a light in their eyes. This so-called white eye can be an early sign of retinoblastoma, a rare form of eye cancer.
Children with the disease develop tumors on their retinas at the back of their eyeballs. Shaw wants to make software that will recognize this leukocoria.
This isn't Shaw's field. He's a chemist at Baylor University. But he got involved with leukocoria detection when his newborn son was diagnosed with retinoblastoma in 2008. He and his wife, Elizabeth, had seen leukocoria in baby pictures when Noah was 3 months old, but at the time the photos were taken, they hadn't realized what was going on.
Naturally enough, after his son's diagnosis, Shaw's first thoughts were to do whatever it took to save his son's life.
But at some point, during the months of chemotherapy, radiation and ultimately surgery to remove his son's right eye to prevent the cancer from spreading to his brain, Bryan started thinking more like the scientist he is.
He wondered what would have happened if the family camera had been programmed with software that could recognize leukocoria automatically.
"If I would have had some software in it telling me, 'Hey, go get this checked out,' that would have sped up my son's diagnosis and the tumors would have been just a little bit smaller when we got to them. There might have been fewer," says Shaw.
And maybe Noah's eye could have been saved.
But there was no software.
Now, for most of us, that would have been that. But Bryan Shaw, the inorganic chemist, figured what the heck, I'll become a software designer.
"I was trained in this funny lab at Harvard called the [George] Whitesides Lab, where we scoffed at specialization," he says. "If you were just an inorganic chemist, you weren't cool. You had to go make it in areas totally outside your field."
To design the software, Shaw needed to find the earliest instance of that white reflection in baby Noah's eyes. That would tell him how early you could catch a sign of the disease.
Luckily, his wife, Elizabeth, was quite the shutterbug, so there were thousands of pictures. After poring over them for weeks, Shaw found what he was looking for.
"We had white-eye showing up in pictures at 12 days old," he says.
Months before the doctors diagnosed his cancer, these photos showed the tumors were there and growing — when Noah was practically a newborn. "I mean, he still had the nasty thing hanging from his belly button," Shaw says.
Using the picture, Shaw developed a scale for how much leukocoria there was in a particular picture. He rounded up some computer science colleagues at Baylor, including Greg Hamerly, Ryan Henning, Pablo Rivas Perea and Li Guo. Together they came up with a software prototype.
Ultimately, Shaw would like to see this software available anywhere there's a picture of a child. "I would like this application, this software, to be free, and I would want it anywhere a picture of a kid is: your laptop computer, your Flickr account, your Facebook account, your phone, your camera," Shaw says. "I don't care where."
But getting the kind of distribution Shaw is hoping for is going to take awhile, because perfecting the software and proving it works is going to be tough.
One thing he'll definitely need is help from parents of children with retinoblastoma. They'll have to donate all of their baby pictures so he can test his software on those and see how it does finding their cancers.
And he'll need pictures of healthy kids to prove the software won't accidentally say they have cancer when they don't. "False positives," says Shaw. "That's going to be the big problem is false positives."
Indeed. Imagine thousands of terrified parents pounding on doctors' doors because their camera told them their kid might have cancer.
"My fear is that I spend a lot of time on this, trash my career, don't get tenure, and it never comes to anything," says Shaw. "But you know what? It's such a good idea, that I believe even if I don't do it, if I just get the word out, somebody else will do it. That's really all that matters."
This story was produced by Rebecca Davis.
RENEE MONTAGNE, HOST:
Now to our series Joe's Big Idea, where NPR's Joe Palca tells about the minds and motivations of people who create remarkable new inventions. Today, in the first of two parts, he explains how a family photo album led to a way to screen infants for a life-threatening cancer. That story begins with a courtship - two scientists in love - who go on to fight for the life of their infant son. Here's Joe Palca.
JOE PALCA, BYLINE: I've met scientists like Bryan Shaw: smart, self-confident, maybe even a bit cocky. But Bryan has this goofy, kind of sweet sense of humor that makes him more loveable than annoying. In 2007, he had it all - I mean, a great post-doc at Harvard, promising job prospects, and he just met this girl, and he knew she was the one.
BRYAN SHAW: I said, what do you do for a living? And she said, oh, I'm a chemist. I said, oh, what kind of chemist? She said a bio and organic chemist. And she said, oh, what do you do? I said, oh, I'm a chemist, too. And she goes, what kind of chemist? I said, well, I'm a bio and organic chemist, too. I actually kind of sort of wrote the book - at least a chapter in it.
PALCA: Bryan went after Elizabeth with a passion.
ELIZABETH SHAW: He was pursuing me like white on rice.
PALCA: She didn't stand a chance. They were married April 9th.
SHAW: Why didn't we get married that day?
SHAW: Because I got out of work early.
PALCA: Soon, Elizabeth got pregnant, and Bryan started scrambling to find a job and win grants so he could support his young family.
SHAW: So, this is it. This was the big Super Bowl. I was going to go out on the job market, show my research and start my career.
PALCA: Now, to be honest, Elizabeth told me she struggled a bit as a new mom. A bad case of the baby blues, she said. But one thing about parenting that came easily was photography. She took a lot of pictures. And in those photos, you could see two young parents, day after day, falling in love with their new baby. But this is where the story takes a terrible twist. When baby Noah was three months old, Elizabeth began to notice something in some of the pictures: an unusual white glow coming from where the black pupil ought to be.
SHAW: I was seeing these white-eye pictures popping up, and I would just delete them, because it's a digital camera. And then when they started to pop up a lot, I was, like, this is weird. So, I remember I flipped through the camera manual to see if there was something about white eye, but it was always about red eye. And then I thought, oh, that retinoblastoma thing.
PALCA: That retinoblastoma thing was something she'd read about in a parenting magazine. Retinoblastoma is extremely rare, but it's terrifying. Children who have it form tumors on the back of their eyeballs. Treatment could mean losing an eye, or in the worst case, death. Doctors diagnose the disease by shining a light in a child's eye. If there are tumors, you'll get a white reflection. So, when Elizabeth suspected she was seeing that white reflection and flashed pictures of Noah, she did what we all do these days.
SHAW: I Googled it. I saw pictures of what they call the coria, which is the white eye, and then just this unsettling feeling settled in, like nausea, like oh, no. And I told Bryan, and Bryan was, like, no, forget about it. Get a hobby.
SHAW: I did worse than blow it off. I grabbed the camera and I started taking pictures at different angles, and some of the pictures wouldn't have the leukocoria, and others would. And I said, look, honey, it just depends on what angle you're taking the picture at. So, yeah, I poo-pooed it.
PALCA: And to be fair, there were good reasons to poo-poo it. As I said, retinoblastoma is rare. In this country, there are fewer than 300 new cases per year. Bryan basically told Elizabeth she was more likely to win the lottery. And because Bryan is Bryan - smart, confident and usually right - Elizabeth believed him, and her anxiety dropped to a dull ache. When it was time for their next well-baby visit a month later, Elizabeth made a list of questions for the doctor on a yellow sticky note. Is there a problem with Noah's eyes was at the bottom of the list. But when the doctor looked in Noah's eyes, she saw something. She left the room and came back a few minutes later to say she'd made an appointment for Noah. He was to see an eye specialist later that same day. The specialist made her diagnosis immediately.
SHAW: She said, OK, it's in one eye - oh, yup, it's in the other eye, too. It's bilateral.
PALCA: Retinoblastoma: tumors in both eyes. Bryan told me he remembers holding Noah when he heard the news, and it was if the words just bounced off him.
SHAW: So, Noah was sitting on my lap, and I just stared at him. I remember I just kept looking at him and nodding, like, OK. That's great. He's still great. But Elizabeth jumped up and put her hands over her ears and just started screaming and running around the room shrieking.
SHAW: I went crazy, like, because I knew what retinoblastoma was, because I had read about it on the Internet after I had suspected that's what he had. And when the doctor finally said this is what it is and I had read what was going to happen, I just - visceral just overtook me.
PALCA: The next few months were almost comically awful. Pushing a stroller through the snow for doctors' appointments, radiation appointments at five in the morning before the subway was even running, buying cases of hand sanitizer to ward off infections while Noah was on chemo, and finally, surgery to remove Noah's right eye. For Bryan, Noah's illness left him feeling confused and lost. Why hadn't they realized what those pictures meant, and if they had, would it have made a difference? He started asking Noah's doctors that question, and most of them said...
SHAW: ...by the time you saw white eye, by the time you saw leukocoria, you're probably not going to be able to save the eye.
PALCA: And this is where Bryan started thinking like a scientist. Really, he thought. How do they know that? So, he dove into the scientific literature.
SHAW: There's no studies on it. Nobody's ever followed the longitudinal frequency, the daily rate of leukocoria or white eye. So, this whole idea that by the time you see the white eye, it's too late to save the eye, totally anecdotal.
PALCA: So, Bryan, being Bryan, decided to try to do his own longitudinal study using Elizabeth's pictures of baby Noah. It wouldn't be definitive - just one subject - but maybe it would teach him something about just how early you could detect signs of retinoblastoma. When Bryan started going through the pictures, he was dumbfounded. Using off-the-shelf software, he found the first signs of white eye when Noah was just 12 days old. He told the doctor taking care of Noah what he found.
SHAW: I said what would have happened if I would have brought my son in at 12 days old or 36 days old, you know, or even two months old? And he said, well, if you would have brought him in the first month, he probably wouldn't have lost his right eye.
PALCA: Bryan Shaw has made it his life's mission to build a tool that parents can use to find the signs of retinoblastoma at the earliest possible moment.
SHAW: In America, it's going to preserve vision. But overseas, where 90 percent of the deaths from retinoblastoma occur, we could be saving lives.
PALCA: Tomorrow, we'll tell you just how that quest is going. Joe Palca, NPR News. Transcript provided by NPR, Copyright NPR.