Brandon Stanton's Blog, page 177

“I got cancer in the summer when the pools were opening. And I...

“I got cancer in the summer when the pools were opening. And I really wanted to go swimming but I couldn’t leave the hospital. I begged her not to go swimming without me. And she didn’t because I couldn’t.”

(2/2) “You have to have faith and keep working. Back in the...

(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.”

(½) “Last week the Mets were down 3-0 in the seventh...

(½) “Last week the Mets were down 3-0 in the seventh inning, and Céspedes tied the game with one swing. Well that doesn’t ever happen with cancer. Nothing is ever immediate. And the hardest part about being an oncologist is trying to be patient. My daughter is a huge Grey’s Anatomy fan. She loves those emergency room stories because they provide an immediate fix. But with cancer, there’s never a simple answer. And at this hospital we see some of the most difficult, challenging cases. You want so much to give that toddler’s parent some sort of guarantee, but you can’t. There’s no guarantee that the treatment will work. And if it doesn’t work, there’s no guarantee that a new treatment will be developed in time. All we can do is try. And wait.”

(3/3) “I grew up around nature. I had a wonderful family...

(3/3) “I grew up around nature. I had a wonderful family and a great life and it was so easy to be a believer. Then over the course of a single weekend, I learned that my one-year-old son was blind, had a seizure disorder, and a brain tumor. I remember I went to a beach, and a storm was coming in, and I just sat on the edge of the ocean and I wailed. For an hour I screamed in the pouring rain. That was thirteen years ago, and there hasn’t been a moment of relaxation since then. We’ve researched everything. We’ve tried everything. Anything to keep the tumor from growing. And the longer we’ve gone on, the more we’ve tried, and the narrower the choices get. There is nothing I won’t do to save my child. There is not a doctor you can keep me from. I’ll drive across the country for a single conversation. But I live with such pain. It’s not rocket science. Every day could be the day that I lose my child. But I’m trying to look up. I’m trying to have gratitude. And I’m trying to keep my faith.”

(2/3) “Sterling is the sanest one in our family. He’s...

(2/3) “Sterling is the sanest one in our family. He’s our leader. He gets to be himself. If we were ourselves, we’d be rather useless because all the time we feel like disintegrating. We call him the Love Bug. He is always loving and happy. Every morning he sings a song while we walk down the driveway. It goes: ‘Another new day, coming my way! I can’t wait to go to school today!’ I look at him and think, ‘What is my problem?’ Then I tell myself, ‘Just follow the leader.’”

—————————————————-

As we learn the stories of doctors, nurses, and patients such as Sterling, we are raising money to research and cure the rare pediatric cancers they are battling against. So far over 8,500 people have donated and we’ve raised over $300,000. Thanks to all of you. Even if only one percent of the people following this page were to make a donation, that would amount to nearly 200,000 donations and over six million dollars. So please consider being counted. Many children come to Memorial Sloan Kettering Cancer Center when they are out of options, and new options must be invented. The study of rare cancers involves small and relentless teams of researchers. Life-saving breakthroughs are made on very tight budgets. So your donations will make a difference. They may save a life. Please consider being counted: http://bit.ly/1TpFcdy

(1/3) “We’ve been fighting this for thirteen years....

(1/3) “We’ve been fighting this for thirteen years. Sterling has a brain tumor in the center of his brain where the optic nerves cross. It’s inoperable. Our lives center around keeping the tumor from growing. That’s what we do. We’re here today to pick up a new experimental medicine. Sterling’s had over one thousand seizures. I joke that this whole experience has made me an involuntary Buddhist. When you live in a world of one thousand seizures, you have no choice but to live in the present. You’re jolted out of your mind every few minutes. And you learn about compassion. Having a special needs child has opened me up to the compassion of other people. There are so many people who are willing to help. When we first discovered the tumor, I sent Sterling’s scans to every hospital. I can’t tell you how many doctors gave me their time and didn’t charge a thing. Zero billable hours. Can you believe it? It was like going snorkeling for the first time, and discovering a whole new world of color that I didn’t know existed.”

“The nurse is in that room day in and day out. You give a...

“The nurse is in that room day in and day out. You give a piece of yourself to that child. But intimacy has its dangers. You have to be able to set it aside. You can’t come in on your days off. You have to be able to go home at the end of the day and have a glass of wine, or go rock climbing, or visit with friends. If you can’t go home and rebuild, you’ll burn out. You won’t be able to handle the losses if you’re just surviving off the wins. Because the losses are severe. You were allowed into that child’s life at their most intimate time, and you were trusted. And that is a gift. And even in death, you learned something from that child that made you a better person and a better nurse.”

“A big part of a nurse’s job is translation. We have to turn...

“A big part of a nurse’s job is translation. We have to turn medical language into common language. We explain the ‘why’s.’ Why they can’t eat. Why there is pain. Why their hair is falling out. You never know what those big medical words mean to a child, so we do everything we can to demystify them. If they play sports, we may describe their tumor as a baseball. And everyone knows that baseballs don’t belong in your belly. Ninety percent of them play video games, so sometimes the cancer is a monster. We’ve got to shoot the monster. We’ve got to bomb the monster. But we’re going to work together and get that monster. We’ll use any frame of reference that they understand: their favorite TV show, their favorite book, their favorite toy. And if we have an adolescent who’s a little bit angry, we’ll just shove our foot up the cancer’s ass.”

“The MDs build the treatment plan. The nurse’s job is to get...

“The MDs build the treatment plan. The nurse’s job is to get it done. We’re the ones who are always there, making sure every single moment of every single day is the best it can possibly be. What’s going to take away that nausea? What’s going to take away that pain? How can we convince the doctor to let this kid see some sunshine? We know when the kid has a play at school. We know which massage therapist they love and which member of the family is most likely to persuade them to take their medicine. These kids rely on certain nurses like they’re gold. A lot of time these kids won’t listen to the doctor. But they’ll listen to their nurse.”

(6/6) “If your child has brain cancer, I can give you some...

(6/6) “If your child has brain cancer, I can give you some advice. First I would say to you: Oh my gosh! Your child has brain cancer. I’m so sorry that happened to you. I’m sure you’re feeling very sad, but don’t be worried because my mom was sad too. I actually have five words for you: It’s the saddest thing ever. So you can be sad whenever you want. If your child is sad, something you can do is tell them to never give up. If they are getting a needle, you’ll probably feel them squeezing your hand really, really, really tight. Tell them: ‘Don’t worry. This is a one time thing.’ The hardest part will be seeing your child with a line to a machine that gives them weird medications that might hurt and make them sad. Then you can give your child a lot of hugs because that will make them less sad. And your child will say: ‘Don’t worry Mom, I love you and I’m going to make it through this.’ And then you can hug them even more.”

——————————————————-

We are currently holding a fundraiser to help study and cure rare cancers like Gabe’s. So far we’ve raised $50,000 from 1400 donations. That’s a great start. If even one percent of the people who follow this page were to donate, that would be 175,000 donations and the results would be staggering. A relatively tiny amount of us could have a giant impact. So please consider being counted! Rare and specialized cancers like Gabe’s require innovation. There are numerous instances of dedicated researchers making life-saving breakthroughs at Memorial Sloan Kettering with small amounts of money. Please donate here: http://bit.ly/1TpFcdy