Tuesday, September 13, 2016
The Department of Pediatrics at Memorial Sloan Kettering was recently featured on the social media sensation Humans of New York. Over three weeks, the series raised nearly $4 million for pediatric cancer research, with more than $1 million going directly to pediatric neurosurgeon Mark Souweidane’s efforts to treat a rare, fatal childhood cancer known as DIPG. We caught up with Dr. Souweidane to hear about his experience and learn how this new funding will forever change the course of treatment.
Until just a few months ago, Memorial Sloan Kettering pediatric neurosurgeon Mark Souweidane had never even heard of the website that would give new vigor to his life’s work.
“I didn’t know anything about Humans of New York — at all,” he says.
But photographer Brandon Stanton, who runs the online photo essay phenomenon, knew that interviewing Dr. Souweidane would be integral to the pediatric cancer series he was shooting at MSK.
The impact of Dr. Souweidane’s interview was beyond what anyone could have imagined. In just one night, readers of the series donated what had previously taken Dr. Souweidane ten years to earn for research into a fatal brain tumor called diffuse intrinsic pontine glioma (DIPG). DIPG is very hard to treat because it’s located in an inoperable part of the brain. Children who are diagnosed with it tend to live just a year or less.
But there is hope, via a clinical trial that Dr. Souweidane oversees. One girl who has received this experimental treatment, in which chemotherapy is injected directly into the brain tumor, has now been alive nearly four years post-diagnosis — three years beyond expected survival.
Sharing His Story with Brandon Stanton
Mr. Stanton learned of Dr. Souweidane’s work during an interview with MSK pediatric oncologist Kim Kramer. Days later, Dr. Souweidane was fielding questions from Mr. Stanton in his clinic. They talked for nearly three hours.
“It was very easy to speak with him,” Dr. Souweidane recalls of their meeting. “He knows what his readers want to hear about: motivation, frustration, success, failure.”
Dr. Souweidane says he was grateful that Mr. Stanton gave him the opportunity to unload some of the emotional weight he’s carried in treating children with DIPG over the years. “It was very easy to talk about things that you commonly think about as a physician but don’t really express to your patients, their families, or your colleagues.”
He also said that finding a cure would create some justice after years of challenges. And now, he is closer than ever to getting there.Back to top
Improving a Clinical Trial for Future DIPG Patients
After publishing Dr. Souweidane’s interview, Mr. Stanton closed out his MSK series with the story of Max, one of Dr. Souweidane’s patients who ultimately succumbed to DIPG. Max’s mother spoke about her son’s last days and how raw her grief still felt. The stories inspired a huge number of readers to take action: Overnight, Dr. Souweidane received $1.2 million in donations to help him find a cure for this devastating disease.
In cancer communities, $1 million might not seem like a lot. But for such a rare disease that gets little national attention, “it will change the course of treatment, undoubtedly,” Dr. Souweidane says.
He will put the money toward improving his clinical trial for future patients. “We’re now going to take this to another level,” he says. “We showed that we can do it. Now let’s design it in such a way that we can do it well. Do we add other drugs? Do we give more treatments? Do we treat at an earlier point in time? These are all very, very particular questions.”
The answers, he says, will benefit children worldwide.
“If there’s a 20 percent chance or there’s a 5 percent chance [of success], it’s remarkably different than the status quo,” he says. “And that would be an amazing feat.”Back to top
A Decade of Work Duplicated Overnight
With his new funding, Dr. Souweidane will be able to work toward answers a lot sooner than he thought.
“It had taken us a decade to get the funding to drive this clinical trial, and to see that duplicated in a day and a half is just phenomenal,” he said.
He’s grateful for the increased awareness of DIPG, “which I never in my wildest dreams believed would exist.” His one request to Mr. Stanton: to hold him accountable. Dr. Souweidane said it keeps him going.
“People who were generous — whether it be a dollar, a thousand dollars, whatever the case may be, whoever read or even read and didn’t donate — you would expect that they’d like an answer. And I don’t blame them.”Back to top