DIPG : A Story From HONY

(2/2) “You have to have faith and keep working. Back in the 70’s and 80’s, all of us were hoping for just a single survivor of stage four neuroblastoma. It was a rare cancer and we just couldn’t cure it. But eventually we figured it out. Recently over five hundred people attended a party we threw for neuroblastoma survivors. So change does happen. It just happens slowly. I have a colleague who lost hope recently. He’s been working on a brain tumor called DIPG, and he’s had nothing but three decades of negative outcomes. Dozens and dozens of failed trials. We just couldn’t touch the tumor because it’s in the main center of the brain. But my colleague stayed optimistic. He kept cheering us on. But he finally lost hope. After three decades of losing kids, he asked to not see any more DIPG patients. Then guess what happened. We finally have a survivor on our hands. Our neurosurgeon Dr. Souweidane figured out how to insert a catheter directly into the tumor. And we now have a girl that is 3.5 years from diagnosis. It’s still early, but it’s promising. She plays tennis. She plays violin. And she is gorgeous.”

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“I’ve been on a mission for seventeen years. It’s my holy grail. I’m trying to cure a brain tumor called DIPG that kills 100 percent of the children who have it. It only affects 200 kids a year so it’s never gotten much attention. But if you saw a child die from DIPG, you’d understand why I care so much. It’s awful. It’s just awful. Parents come to me in droves asking me to help. They say: ‘This can’t happen. Please do something.’ But there’s nothing I can do. Their child will be dead in a year. It’s horrible. It’s been a very tough thing to care about. I didn’t get into neurosurgery to watch kids die. I chose this job to heal people. And DIPG has been seventeen years of watching kids die. It’s a very dark place to work. But if I can find a cure, so much of that pain will be paid back in a single instant. And on that day I will feel like there has been some justice.

A photo posted by Humans of New York (@humansofny) on May 18, 2016 at 1:17pm PDT

When I first started working on DIPG in 1990, I thought: ‘I’ll figure it out in two years.’ That was before I had gray hair. I had no money. My office was the size of a closet and I was buying my own rats. But I was so optimistic. I had no idea what was facing me. There were so many hurdles I didn’t see. Everything was new. I never had any experts I could call or articles I could read. I had to figure everything out on my own. From a surgeon’s viewpoint, the tumor is unforgiving. It infiltrates the brain stem. Everything your body feels or experiences passes through that stem. You can’t violate it with a knife. It’s futile to even think about. So I had to figure out how to insert a catheter through the brain, and inject chemotherapy directly into the tumor. There is zero room for error. These chemicals must only touch the tumor. If you miss the target by a couple millimeters, it can be fatal. Brain surgeons aren’t artists. There isn’t much room to be creative. The innovator in neurosurgery is under a great deal of pressure. We must invent without being too imaginative. If we stray too far from our ancestors, it could lead to death. In May of 2012, I finally got approval to conduct a clinical trial. A family flew up from Florida with their child Caitlyn. I was so nervous. I’d written so many elegant papers. I’d conducted so many trials on mice. I’d done so many tests in the lab proving that this could work. But here I was looking at a human child. Am I really ready? The spotlight was unbelievable. If I kill this child, it will decimate me emotionally. And the institution’s reputation was on the line. Had I done enough? Had I prepared enough? All these things were running through my mind as Caitlyn’s mother signed the consent. But when she finished, she turned to me and said: ‘Whatever happens, thank you for trying.’ And I still get emotional when I think about that. Because she took so much weight off me. The operation was a success. This is Caitlyn a week later. She could walk! She could jump! She could touch her nose! She lived for a year after that, but then her cancer came back and killed her. It was so hard for me. I was so close to her family. But right now I’ve had about twenty successful trials. That’s twenty living children. One young woman has been alive for three years. Every passing day that those children are still alive is the greatest day of my life. My childhood was building things: model rockets, model cars, train sets, airplanes. And I didn’t just build them. I focused on every detail. I hand painted every letter on the train. I sanded the wooden ribs of the airplane until everything was so precise and fit. And it felt so good when that work was finished and appreciated. It was the same drive that brought me into neurosurgery. I loved fixing things. And I had always been successful. To get to be a neurosurgeon, I had to succeed on so many levels. I’d become accustomed to success. But I finally found something I couldn’t fix. All my DIPG patients were dying. It was failure beyond failure. Kids were dying because I’m not good enough at this. And they don’t deserve it. And neither do the parents. It’s so hard to face these parents. They’ve envisioned everything that’s going to happen to their child from the day they were born: the first girlfriend, the first job, the first homerun, the first time tasting meatballs, it’s infinite. And they come into my office and, ‘Kaboom.’ All of it disappears. It’s horrible. Seeing their faces. It’s beyond abominable. I just can’t take it. I’ve got to stop these kids from dying

(1/5) "Max had two mothers. We found a sperm donor and I gave birth to him through IVF. He was actually a twin. I decided to reduce the pregnancy because I was scared at the time. I didn't think I could handle twins. And that decision will haunt me for the rest of my life. Max was such a sweet child. I was a bit of a hard ass on him. I wanted to be sure that I gave him boundaries because I never had them growing up. But I think it brought us closer together. Because he knew I’d always protect him. And he was so protective of me too. But in such a sweet way. He’d hold my face in his hands. God he was so sweet. Just such a nice guy. So funny. He loved to laugh. His bedroom was close to ours and we used to hear him in there late at night, laughing by himself.

A photo posted by Humans of New York (@humansofny) on May 19, 2016 at 8:51am PDT

(2/5) “One of Max’s eyes started crossing over when he turned six years old. But I wasn’t too worried. He’d been such a healthy kid. I thought maybe he was developing a bit of a lazy eye. But the doctor started getting really uncomfortable during our appointment. He scheduled an MRI for the next day, and he told me: ‘Let’s not be too worried. I’m going to sleep well tonight.’ It was such a weird thing to say. Right? I had been completely relaxed until he said that. We got the MRI early the next morning, and I went to work. The results came in a few hours later. They called me while I was walking down the street. I just collapsed on the sidewalk.

A photo posted by Humans of New York (@humansofny) on May 19, 2016 at 11:28am PDT

(3/5) "There was a tumor in his brain. The doctor told us that he knew what it was. He said it was called DIPG and that he hadn’t found anything that worked. He said it would eventually kill him. And I started screaming. And I asked how long. And he told us a year. He told us that ‘doing nothing’ was an acceptable choice. And he said, ‘This will be harder on you than it is on Max.’ And I remember looking at Max. And he was so beautiful. All he had was that crossed eye. Our life had been beautiful and now everything sucked. I didn’t know what to do. So we went to the Lego store. He was obsessed with Legos. That night he got so many Legos.” ---------------------------------------------- Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Nearly 60,000 people have donated and we’ve raised over $2.2 million so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). I promised Julie that all money raised during the telling of her story would be given to Dr. Souweidane and his colleagues to aid in the fight against DIPG. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.

A photo posted by Humans of New York (@humansofny) on May 19, 2016 at 2:02pm PDT

(4/5) “I think I have post traumatic stress. I have so many horrible flashbacks. Two weeks after Max was diagnosed, he asked me if I’d be his Mommy forever. I said, ‘Of course I will.’ And he asked: ‘Even when I’m ninety?’ And I told him ‘yes.’ What was I supposed to say? And there were all the times he talked to me about the future. We’d talk about college. I just couldn’t tell him. God I was such a coward. I should have told him. I just couldn’t do it. Even toward the end. The day before he lost consciousness, I read his favorite book to him. It’s called Runaway Bunny. And the little bunny keeps threatening to run away. And the Mama bunny keeps saying: ‘Wherever you go, I will find you.’ Oh God, it was such a horrible way to die. He couldn’t speak or move or swallow or see. He basically starved to death. And the whole last week I’m whispering in his ear: ‘Let go, let go. Please Max, let go.’ My seven-year-old son. I’m telling him to let go. I mean, fuck. That’s not supposed to happen! And the whole time I never told him he was dying. I was such a coward. But he knew. He knew without me telling him. Because a couple weeks before he lost his speech, he asked me: ‘Mommy, do they speak English where I’m going?’” --------------------------------------------------------Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Over 65,000 people have donated and we’ve raised over $2.3 million so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). In fact, Max was supposed to be part of Dr. Souweidane’s first clinical trial but he passed away too soon. I promised Julie that all money raised during the telling of Max’s story would be given to Dr. Souwedaine and his colleagues to aid in their DIPG research. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.

A photo posted by Humans of New York (@humansofny) on May 19, 2016 at 3:43pm PDT

(5/5) “I used to be a really happy person. I really was. I was the person who would walk outside and say: ‘Isn’t everything beautiful? Isn’t life wonderful? Aren’t we so lucky?’ I don’t have that sense of joy anymore. I remember the Mother’s Day before Max was diagnosed. It was four years ago. We were in this same park. On the lawn over there. It was beautiful. All three of us were there. Irene and I were in love. And Max was lying on my feet and pretending to fly in the air. And he was laughing so hard and I remember feeling so happy and full of life. It was the last moment that I truly felt joy.” ------------------------------------------------------- Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Over 70,000 people have donated and with over $2.6 million has been raised so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). In fact, Max was supposed to be part of Dr. Souweidane’s first clinical trial but he passed away too soon. I promised Julie that all money raised during the telling of Max’s story would be given to Dr. Souwedaine and his colleagues to aid in their DIPG research. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.

A photo posted by Humans of New York (@humansofny) on May 19, 2016 at 5:16pm PDT

Over the past two weeks, 90,000 of you donated nearly $3.4 million to help fight pediatric cancer. That is a staggering amount of money. Thank you. For those of you who might not have been in a place to contribute financially, thank you so much for engaging with this difficult material. The support and solidarity you showed these families was just as valuable as the money itself. You are the most caring community of people on the Internet. That’s no exaggeration. It’s proven by the tone of every comment section. And it’s proven by the $8.5 million you’ve given to charity in the past 1.5 years. You are such a compassionate collection of people, and I can’t thank you enough for all that you’ve contributed to HONY. Lastly, thank you so much to Dr. O'Reilly and the Department of Pediatrics at Memorial Sloan Kettering for making this series possible. Special thanks to Nina Pickett and Rachel Corke, who paved every stone on my path. I’ve got one last story to leave you with. Last night you raised over $1 million in honor of Max to research and cure DIPG—the brain tumor that killed him. Dr. Souweidane tells me that this money represents the “single greatest leap forward” in his personal crusade against DIPG. When I interviewed Julie a few days ago, we were sitting on a bench in Madison Square Park that had been dedicated to Max. The plaque listed all the things that Max loved, and one of those things was ‘millions.’ I asked Julie what that meant. ‘Max’s uncle Charley gave him one hundred dollars,’ she told me. ‘And Max kept saying that one day he’d have a million.’ So thank you, everyone, for giving Max his million. I’ll be leaving the fundraiser up all day, for anyone who would still like to donate. Link in bio.

A photo posted by Humans of New York (@humansofny) on May 20, 2016 at 9:18am PDT