Brandon Stanton's Blog, page 173

(3/5) “There was a tumor in his brain. The doctor told...

(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.”

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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: http://bit.ly/1TpFcdy

(2/5) “One of Max’s eyes started crossing over when he turned...

(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.”

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This is the last day of our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. We’ve raised over $2 million so far. Funding is scarce in pediatric cancer, and largely relies on private donations. So this money will have a giant impact. These donations will fund the science that saves the lives of children. So even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

(1/5) “Max had two mothers. We found a sperm donor and I...

(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.”

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This is the final day of our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. We’ve raised over $2 million so far. Funding is scarce in pediatric cancer and largely relies on private donations. So these donations will have a giant impact. They will fund the science that saves the lives of children. So even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

(4/4) “My childhood was building things: model rockets,...

(4/4) “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.”

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Help us fund Dr. Souwedaine’s work. There are less than two days left in our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. Your donations will fund the science that saves the lives of children. This includes the research of Dr. Souwedaine. Over 50,000 people have donated and we’ve raised $1.9 million so so far. It would be amazing if we could reach $2,000,000 by the end of the series. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

(¾) “In May of 2012, I finally got approval to conduct...

(¾) “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.”

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We have two days left in our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. Your donations will fund the science that saves the lives of children. This includes the research of Dr. Souwedaine, whose story is being told this evening. Nearly 50,000 people have donated and $1.8 million has been raised so far. It would be amazing if we could reach $2,000,000 by the end of the series. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

(2/4) “When I first started working on DIPG in 1990, I...

(2/4) “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.”

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We have two days left in our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. Your donations will fund the science that saves the lives of children. This includes the research of Dr. Souwedaine, whose story is being told this evening. Nearly 50,000 people have donated and $1.8 million has been raised so far. It would be amazing if we could reach $2,000,000 by the end of the series. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

(¼) “I’ve been on a mission for seventeen years. It’s...

(¼) “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.”

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We have two days left in our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. Your donations will fund the science that saves the lives of children. This includes the research of Dr. Souwedaine, whose story is being told this evening. Over 47,000 people have donated and $1.7 million has been raised so far. It would be amazing if we could reach $2,000,000 by the end of the series. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

“I have two birthdays. My first birthday is May 19th, 1992....

“I have two birthdays. My first birthday is May 19th, 1992. And my second birthday is December 28th, 2007. That’s the day that I got my bone marrow transplant and my new immune system was born. I was just like a baby again. I was so weak. I had no energy. I couldn’t do anything for myself. We celebrate that day every year. It’s not a huge party. I don’t get a big cake– maybe just a cupcake with a candle. But my family gets together and we talk about all the good things that have happened to us in the previous year. I always say that I wouldn’t change a thing about my life. Even the cancer. Because my family is very close now. And sometimes I feel that we are this… because of that.”

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We have two days left in our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. Over 46,000 people have donated and $1.7 million has been raised so far. It would be amazing if we could reach 50,000 donations by the end of the series. Your donations will fund the science that saves the lives of children. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

“Sebastian was diagnosed when he was twenty months old. He...

“Sebastian was diagnosed when he was twenty months old. He needed several rounds of chemo just to shrink the tumor to the size of an orange. He couldn’t eat for fifteen days because they didn’t want to feed the tumor. He was in so much pain. The lining of his stomach had burned away. Every time he woke up, I’d just rock him back to sleep. I never wanted him to be awake. I was hoping so hard that he was still young enough to forget everything. But the cancer kept coming back. And he grew old enough to realize he was sick. And that broke my heart. I was up with him one night after the cancer came back again. He’d already had six surgeries at this point and we were doing more chemotherapy. He was throwing up and had diarrhea. I felt so bad for him. And I was so tired and felt so guilty for neglecting my other children. And Sebastian said to me, ‘I’m so happy, Mommy.’ And I was so confused because I couldn’t understand how he could possibly be happy. Then he smiled, and said: ‘Because I love you so much.’”

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We have two days left in our fundraiser to help fight pediatric cancer at Memorial Sloan Kettering Cancer Center. 44,000 people have donated and over $1.6 million has been raised so far. It would be amazing if we could reach 50,000 donations by the end of the series. Your donations will fund the science that saves the lives of children. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy

(6/6) “If I was to write a book about this whole experience,...

(6/6) “If I was to write a book about this whole experience, it would be called The Town That Saved Grace. So many people rallied around my daughter. There are just so many good people out there. Every time you turn on the TV, it’s always people yelling and fighting. You forget how many good people there are. After Grace got diagnosed, people cooked dinner for us for months. The schools were so supportive. Everyone helped out: the swim team, the soccer team, the fire department, the church. Our church had a rosary for Grace one day and they couldn’t even fit everyone in the chapel. Absolute strangers would stop us in the supermarket and tell us they were praying for us. But the moment I’ll never forget is when we were driving in our car one day, and we pulled over to stop at a lemonade stand. And it was a lemonade stand for Grace.”

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Grace’s life was saved by an experimental antibody, which resulted from the efforts of a group of parents who raised $2,000,000 to fund research. We are currently holding our own fundraiser to help the team at Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Your donations will fund the science that saves the lives of children. There are three days left. Over 35,000 people have donated so far and we have raised over $1.4 million. It would be amazing if we could reach 50,000 donations by the end of the series. Even if it’s a small amount, please consider donating: http://bit.ly/1TpFcdy