Radiolab - The Cathedral

Episode Date: December 28, 2015

Ryan and Amy Green were facing the unfaceable: their youngest son, Joel was diagnosed with terminal cancer after his first birthday. Producer Sruthi Pinnamaneni tells the story of how Ryan and Amy stumble onto an unlikely way of processing their experience fighting alongside Joel: they decide to turn it into a video game. In the end, they find themselves facing what might be, for a game designer or a parent, the hardest design problem ever. Correction: In the original audio we stated that the survival rate of childhood AT/RT cancer is 50% over five years. But studies suggest the survival rate is 50% over two years. The audio has been updated to reflect this change. For an extended version of this story and a bunch more incredible stories, go check out Reply All. Special thanks to Eilis O’ Neill, Jon Hillman, and Josh Larson. This episode included audio from “Thank You For Playing,” a documentary film about the creation of That Dragon, Cancer by David Osit & Malika Zouhali-Worrall. You can learn more about the film and where you can see it, at thankyouforplayingfilm.com. For more, we suggest reading Wired's "Playing For Time."

Wait, you're listening. Okay. All right. You're listening to Radio Lab. Radio Lab. From. W. N. Y. C.

See? Yeah. Hey, I'm Chad. I boomrod. I'm Robert Crulwich. This is Radio Lab. And today we're going to feature a story from our friends over at Reply All. Which is a podcast produced by Gimlet Media. Hosted by PJ Vote, Alex Goldman.

We're going to let you hear a taste of Reply All. You know, because it's an amazing show. The entire staff's like secret favorite show, not even secret, actually. And this story, it just kind of grabbed us. Now, we're not going to play you the whole story that they did. We're going to play you most of it. And we may intervene from time to time just to sort of, because we bubble over with questions sometimes. Exactly.

And this story actually doesn't come from PJ and Alex. It comes from one of their producers, Shruti Pina Maneni. Yes. And the story sort of centers around a couple and their son. So let me start by introducing you to the couple. Amy Green, hi. And Ryan Green. We have our buffalo chicken.

Oh, wait, you got two hot wings from yesterday. No, I already ate those. I think that's why I'm suffering this morning. They live in a small house in Loveland, Colorado. They fell in love chatting online, got married. As soon as they turned 21, they moved into this house the very next day. Oh, let me respond to some emails and then we'll head down. They had their first son, Caleb, their second son, Isaac.

Ryan was a computer programmer, and Amy took care of the kids. They were just living in a mess of diapers and toys, going to church every Sunday. And then in 2009, they had Joel. When Joel was born, how old were you? I, gosh, I was thinking about this the other day. If I was 25 when Caleb was born, and then when Isaac was born, I would have been like 27. Yeah, I think I was 28. I was 28 when Joel was born.

Figured it out. Everything was normal, fine, and then just a little before his first birthday, Amy noticed that his head was a little tilted. Just kind of cocked to one side. A couple days later, he starts throwing up. Can't keep any food down. And so they do a bunch of tests, and the doctor says, listen, your son has a lesion, it's a cancer.

So they biopsy the tumor, and then they come back with this news is that it's something called an A-T-R-T. It's very, very difficult to treat. So when you have an A-T-R-T, you'll go through all the most intense chemotherapy and all the most intense radiation. They throw the kitchen sink at it. And doing that, you have about a 50% chance of surviving for five years. I double-checked this, and it turns out the odds of survival are even grimmer.

It's a 50% chance of surviving just two years. When you hear this kind of news, is there? any part of you that's like, what if you don't do the treatment? I remember before his first surgery, asking them a lot about like, will he have to have chemotherapy and thinking to myself? Because I can't, we can't, we can't do this. This is crazy. We can't do this.

But then as time we're on, and by the time we actually even heard about the tumor, then you're just thinking like, oh, well, 50%, like, that's half. Like, we've got a good shot that he gets through this. What do you think, Isaac? He's in a hospital, so they're taking care of him. This is from a home video of Joel's brothers meeting him in the hospital. Isaac is two and a half, looking kind of scared. Joel is a little over a year old.

He's lying in a small red wagon, hooked up to an IV. He's skinny and his head is perfectly round. His food goes through that too. Yeah. So they start going through this treatment. It starts off with intense radiation and then just, you know, months of chemotherapy. which I didn't know what that meant. It means that you just hold the baby for six, seven, eight hours a day and you just lie in a

bed with them while they get these infusions. And so it would be like this eight hour pump and you'd hook it up at night and it would be this like this white milky substance that would provide all of his nutrition because he couldn't swallow very well. One day, it was Amy's shift. She was holding Joel. I was sitting in his room with him. I was singing him a song and clapping.

and he was clapping his hands. And then he was sort of like babble singing along. And so like for me, it was just one of those moments that you felt like, oh, I'm always going to remember this. Like sometimes you just have a moment and you go, I'm going to remember this the rest of my life. And then that made me sad because I thought, oh, like, but the reason I think I'll remember this the rest of my life is because he could die.

Until eventually I did just kind of decide like, I think I need to be all in. Like, I think I need to love him like mad. And I think we need to live our lives like he. he's going to live. And that's what they did for a year. And then in November 2010, just before Joel's second birthday, the doctors call them in and they say, we're really sorry. Joel has another tumor. All these chemicals we've been pumping into him. They didn't do anything. And so it's time for us to stop. He will eventually die. We're not sure. But we're thinking about four months. You know, this is it. But as Shruti goes on the

explaining the story, that definitely wasn't it. Because there's this one night when the situation was pretty much had its worst, when something happened. Joel had his stomach bug. He was throwing up, got dehydrated. So Ryan spent the night with him in the hospital. I just remember him really wanting apple juice because that was one of his favorite things at the hospital, but then I'd give it to him and he'd just throw it up again.

And he's crying and crying, and his cries just get more frantic, an animal. And there's nothing that Ron. can do. By the end of the night, he had just such sunken eyes. But I just remember, like, I wanted to hold him, and I couldn't put him down because he would get so upset. And when Ryan finally did put him down, Joel would start hitting his head against the wall of his crib. Eventually, Ryan himself started to lose it. He was crying too. And then, in the early hours of the morning, he lay down and prayed. And I remember that's when he stopped crying and he fell asleep. And it was just one of those, it's one of those few moments in life where, like, it felt like an answer from God.

And it wasn't like I heard a voice or saw, you know, a burning bush or anything like that. But it was just, it felt so much like mercy. And beyond just sheer relief, Ryan had this other thought. Frankly, a weird thought. This whole ordeal reminded him of a video. game. Like, you have to get the baby to stop crying, so you keep trying things, give him juice, bounce him, talk to him. But the weird thing is, in this awful game, none of those things actually work. They're all like fake choices. Ryan thought, what if I could make a game like

this, where you, the player, you don't really have control. And so he started to think, like, I wonder if I could make that. If I could make that scene. If he could make the scene of Joel in desperation and then give him an option? Is there a act of saving meaning? No. No. So he's going to make a video game where everything you do doesn't work, the baby still cries. Yeah.

I think he was just intrigued by that because it seemed bizarre. Yeah. I'll make a video game where you can't do anything except pray. I don't know if that says has a very high likelihood of being a popular game. I think the popularity of it was so not a. He wasn't even thinking that because he wasn't thinking, oh, this is a game that I will release. It was almost like a thought experiment, right, in his brain where he's thinking, you know, usually people come into a game trying to solve it. And I wonder how if I could make this game where they couldn't, they would understand me at how I feel right now.

I remember he really was like, I want to make a game about that day that Joel was dehydrated in the hospital. And I said, that's terrible. That's not a game and no one will want to play that. like, I think that that word game meant like something you do in your leisure time. You know, and so who wants to spend their leisure time reliving the worst moment of a man's life? So I said, do not make that. That is horrible. But he clung to the idea, so finally Amy said, okay, I'll give you three months.

So a few months later, it's the game developers conference in San Francisco, alongside Assassin's Creed 3, Battlefield 4, the new Oculus Rift VR headset. Oh, good. Hi, everybody. My name is Ryan. There was Ryan. I'm going to talk to you about a personal game that I'm making. My son, Joel, had just turned one year old the day that we found the monster in his brain.

Ryan is standing in front of a bunch of young tech dudes. They're listening kind of half-heartedly. Joel is alive in fighting his eighth tumor. Our doctors fight for him. Our family fights for him. And we serve a God that's the God of the living, not the dead. In the middle of all this pain and suffering and mud and morass, that cancer is wrought in our family, we have a drink of water.

That's made of hope and love and light, and we hope to share it with you. Amy stayed home, fretting because they were almost out of money, and she was worried that Ryan would come home feeling crushed. But that's not what happened. Ryan got back and said, it was amazing. This person introduced me to that person, that person introduced me that one. There's two or three different people who want to fund my game.

Wait, so you're saying there's actually a market for a game like this? So I want to be clear, the world of these kinds of emotional games, it's a small one, right? But there are people, they're investors in there who are looking for games that are doing something different, looking for games that are meaningful in some way. And so I think a few of them played through the scene, this dehydration scene, and they thought, okay, let's like see what a full-fledged version of this would be. And we're just, you know, it's like the video game generation has grown up, right? Like if you were born in the 80s or the 70s, like you played games for certain reasons when you were a kid and now we're grown up and we're having these different.

experiences, like a child going through cancer or, you know, the death of my father or these things which suddenly you're like, why can't I tell these stories with video games? And what was Amy's reaction when she heard people wanted to fund the game? It really blew my mind because I'm still just like, because of your dehydration game that I told you to never make? And he realizes like, you've never played it. Like you've never played the scene. So I put on the headphones.

And she finds herself back in the hospital. room. You don't see Joel. You see an empty crib and you can hear him crying. You're playing as Ryan. You can move your mouse around the screen and options appear. You can give him juice, you can try to bounce him, you can walk into the bathroom, look at the window, but no matter what you do, his crying just gets worse and worse. Okay, buddy, okay, I'll hold you. Please. Stop. After five or six minutes of this, Brian sits in a chair, drops his head into his lap, and prays. And you've brought us this far.

He's still here, not dead, not there with you. The crying stops. Peace. He sleeps. So I put on the headphones. And I just lost it. And I was just crying and crying. And I knew Joel was okay.

And he was like right there. like Joe was right there with us. And yet it brought me back to that space in a much more real way than I thought that a video game could. Amy didn't need any more convincing. She said, okay, let's do this. Let's pull the rest of our savings and make this game. They named it that dragon cancer. I'm just going to use the same tease that reply I'll use in their podcast.

Coming up, Ryan and Amy encounter what might be the world's biggest design problem. This is Riley Lawrence from Woodland Hills, California. Radio Lab is supported in part by the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.s. Hey, I'm Jan Abumran. I'm Robert Crullwitz. This is Radio Lab.

And we are back with, again, reply all story. It's about a couple who have a kid who's fighting cancer. And the mom and dad have decided to express the experiences that they're going through in, of all things, a video game. Yeah, so Amy and Ryan and their six-person team, they begin to build these scenes of the game, these surreal vignettes, where you, the player, you take on different characters. And in every scene, your job, your role basically is to kind of take care of baby Joel. So let's now go back to the piece and to Sruti. The first scene is at the pond. You start off as a duck.

You paddle towards a little boy. It's Joel, or this origami version of him. He doesn't have eyes or a mouth, but he has a voice. And that is actually Joel's laugh as you hand him pieces of bread, and he throws them into the water. Here you go, Joel. Here's a piece. Okay, no, you try. Joel's almost five, right?

Yeah. The kid speaking here is Isaac. Joel's brother. But he can't talk. It's true. Yeah. You know he can talk. Yeah, I know.

Why can't Joel? Well, Joel got sick right after he turned one and... Kind of slowed him down a little bit, buddy. Yeah. And there's other vignettes. Like, there was this one time in a hospital when, to keep Joel entertained, Ryan blew up surgical gloves like balloons. It's this gorgeous scene where you see Joel

floating into the nighttime sky towards the moon holding on to these surgical balloons. And then you see these black burrs appear from the corner. That's the cancer. And they pop the balloons one by one. And throughout these scenes, you play mini-games, you discover rooms, listen to voicemails from Amy. There's even little levels you can beat.

But the cancer is all. always around the edges of this world, thorny and black and creeping in. And at one point, you'll arrive here. The waiting room where doctors tell Amy and Ryan that Joel's cancer is terminal. As they break the news, rain starts pouring into the room, and Ryan slowly starts to slip under the water. We've given you a lot to think about already today, but we're going to have you come back Monday. and we can talk about palliative treatment. Just to jump in for one second, we asked Shruti,

so as Ryan and Amy and the team were crafting these scenes, what was happening with Joel? And she says, what happened surprised everybody. The thing that happened was that tumor where, you know, the doctor said, listen, he's terminal. It's going to be over soon. They radiate the tumor and it goes away. And then a few months later, he gets another tumor.

They radiate and it goes away. And then this happens again and again and again. And so he's two years old. He's three years old. He's four years old. He's doing things that the doctors never thought he would do. Like he turned two and a half and said his first word. Uh-oh.

Mm, num, yum, yum. He starts to swallow again. Oh, don't you have to food. Starts to walk when he's three. He just became this miracle baby. Somebody in their church said they had a vision. A woman in the church told her that she had a vision that Joel would do great things. Another reason they wanted to make this about Joel is because they felt as if, you know, as Christians, they were living a miracle.

And they wanted to share this with people and show them. And then a doctor calls them in and he says, listen, Joel has a new tumor. But this tumor is different. It's in a place that we've already radiated. He explained to us that it cannot continue to radiate an area too much or it can cause brain death. And it was right on the brain stem. The doctors say we're not going to radiate this time. And what happened to Joe?

His condition very rapidly deteriorated. He's having more trouble breathing. He can't swallow again. A lot of the things that he was able to do, like walk and eat, he stopped. And so they invite their entire church community to come to their house and pray. We had a prayer night just praying for him to be healed. And we just had everyone over and we spent, you know, hours just worshiping and praying. There's video footage of this night.

It's in their small living room. There's family members, friends, people from their church community. Ryan is holding Joel and they're praying. All we have is death here on this earth. That's all we have. The only hope we have is your resurrection, God. So why would hope hurt us? All I have is my disappointment.

That's what I start with. But I have hoped that you fulfill my disappointment, that you make it right, that you redeem it. And thank you, God, it's the blind who see, and it's the deaf who hear, and it's the dumb who speak. And God, I believe you do all of those things. I believe that you could do all of those things. My child.

What's your strongest memory from that night? I think it's just realizing that he was going to die that night. It's that space of being with a bunch of people that desperately want the same thing that you will and are crying out for that grace and that mercy to kind of invade a situation. Joel died later that night. It was March 13, 2014. I feel like in a way because we were believing that he would be healed and because we were believing that even if he died, maybe he'd be raised from the dead, which is wild.

And you said, I'll have to put that in your story because it's weird. And I so get that it's weird. But because we still believed that he could live, I feel like we didn't go through all the processes of getting ready for him to die the way that maybe you would, if you were certain that this was it. So at this point in the tale, Sruti tells us, well, they had to finish the game. I mean, they'd invested an enormous amount. of time and heart and talent in building this game.

But now the facts have changed. Yeah, it started as a game that was supposed to be about the experience of fighting cancer, but also the experience of triumphing over cancer, but can't be that game anymore. So, like, what do you do as game designers, as parents? How do you finish a game where you don't have many choices and you can't win?

For this part, as we were talking with Shruti, I mean, it's so visual. She just sat down and walked us through as descriptively as she could how Ryan and Amy, particularly Ryan, tried to solve this design problem. The end of the game, they weren't sure, but it was basically going to be a two-part scene where there's the moment of his death, you know, and they weren't sure how to do that. But there's a moment of his death and right after that a moment where he goes to heaven, essentially, there's this little island. And so Ryan sets about making the scene of his death. It starts off pretty simple. It's in a hospital.

There's little Joel sitting on a green chair, and there's some tubes of this neon fluid feeding into him. And there's these pipes that rise up above him, which are like pipe organ pipes. And there was a little bit of gameplay where you can play the pipe organ. Anyway, and then after that, he said, well, this isn't enough. This is the scene where my son dies, and so it must be just like epic. And so he creates this almost European style, like oversized cathedral where, you know, the walls are soaring up and the ceilings are intricate and contain all these different like body. Like it's almost as if he's coding Joel's body into the architecture. So he has, you know, pieces that look like ribs and there's this part that looks like his heart.

I can show you guys these pictures. So I'm trying to think how I do that. Maybe just hold up your laptop to the glass. Yeah, this is so in the, just quickly I want to show you. Oh, wow. Yeah, so that's. Oh, that's amazing. Right.

That's amazing. He's so pretty. I was not prepared for the beauty of this. Very intricate, interlacing arches, light cascading down. That's the catacombs. Stained glass. These very ornate ceilings. And so he starts building that.

And it's beautiful. And it just gets bigger and bigger. And then suddenly he feels like, you know, this is too light. And so then the cathedral becomes a place of darkness and all the lights are neon. Oh, so now it's very dark. There's trees growing into the cathedral now. That's the cancer. Huh.

And then he's in this space and he's like, so what should people be able to do in this space? We have all this, you know, these tubes and things for chemo. I want to put in the machines that we're keeping Joel alive. So we were feeding him with these nutrition IV things. We had these oxygen tanks. And so he starts building actual equipment that the user would have to like fiddle with the levers and, you know, make things just right so that Joel's getting what he needs to stay alive. But then he thinks, oh, well, if they do it wrong, then they'll feel as if Joel died because of them. And that's terrible.

And so then he says, you know what, scrap this whole thing. Schruti showed us maybe 60 different sketches, different iterations of the cathedral, that were all super detailed in a kind of Terry Gilliam on steroids sort of way. Like for instance, there was one sketch where Ryan had built an entire amusement park in the cathedral. And that was supposed to represent all of Joel's favorite things. And then he's like, wait, but now it's all, there's just like too much stuff. It's distracting. So then he takes out the whole amusement park. and then he puts in these prayer candles.

Because he's like, you know, really what I want people to take away is this feeling I had on the last night of Joel's life where all you can do now is pray. And so you light one of these candles and you hear a prayer from that night. Lord, my God, let this boy's life return to him. I will not let you go unless you bless him. And it's been hard, I think, for both of us

to get to a place where we say, it can't say all the things. The cathedral can't say all the things we want it to say. I just had to cut something else in the game because we couldn't finish it. And it's hard because you just want to never finish it and make it as beautiful as possible. And I don't know. Like there's a part of me that feels like we betray the project by finishing it

and by saying it can only be so much. But of course, they have to finish it. There's investors. There's a release date. What's disappointing to me is how quickly it fades. Joel how the memories and the person of Joel

fades because he's not here he becomes more and more an idea this this game is not him it's just an echo of him it's not it's not even the best echo of him I think that's the thing that I'm struggling with as we've as we're approaching the end of this

like what did we do all this for why is it that Why did we do this? The game is coming out mid-January. The cathedral to Ryan will always be unfinished. Can you show me the last scene with the pancakes? Sure. Ryan was able to finish the place that comes right after the cathedral.

It's the scene where you say goodbye to Joel. You find yourself in a boat next to Joel. There's no oars. You're headed towards an island. You get there. You walk a little. along a small path and you end up in a clearing in the woods. There's a picnic blanket and Joel's sitting on it.

I remember you? You made it too. I'm glad you're here. I love it here. I bet you have liked it too. And around him are all the things he loved the most. Look at all of these pancakes. A huge stack of pancakes way, way bigger than him. A little dog. I always wanted a dog and now I got one. And bubbles. You can blow him bubbles. I love bubbles.

Throw bubbles? Look, I can touch one. You can blow him for as long as you want. Okay. Okay, Jill. And you just keep blowing bubbles. I love bubbles. Throw bubbles. And at some point...

Look, I can touch one. You just walk away. balls catch a bubble he likes to buy them never bubbles it's like wow that's the choice you get

at the end of this game is to not stop until you're ready to walk away it's not much of a choice no very big thanks to Shruti Pina Menni and the whole team at reply all

PJ vote Alex Goldman and our former producer Tim Howard I love you Tim how you Tim via Benin Kalila Holt Peter Clownley my first editor, and Rick Kwan. And definitely go check out, reply all.

You can find them at gimletmedia.com, G-I-M-L-E-T. They're so, it's so fun. It's such a fun show. It is. We were on a stage with them in a thing, and we thought we were, you know, good. We thought we were good. And they were so much better than us.

They were so much better than us. They had this. Such a good story. I think it actually might be coming up in their stream next week, maybe. Yeah, you want to check it out. It's about a woman who shoots everybody every night for years and years. Over and over. And she's like, well, I want to tell you.

Don't say the right. Also, thanks to David Asset and to Maliko Zuhali Warl, who made a documentary also about Ryan and Amy. They called theirs Thank You for Playing. I saw it. It's pretty good. And thank you for listening. I'm Chad Abumrod. I'm Robert Crowich.

We'll see you next time. You have two new messages. To play the message, press two. Hey, hey, Radio Lab, Shriffy here. Just reading the credits. Radio Lab is produced by Jad Aboumrod. The staff includes Brenna Farrell, David Gable, Dylan Keith, Matt Hilty, Robert Krollwitz, Andy Mills, Lateef Nasser, Kelsey Padgett,

Ariane Wack, Molly Webster, Thorne Wheeler, and Jamie York. With help from Simon Adler, Alexander Lee Young, Abigail Steele, Stephanie Tam, and Michael Lowinger. Our fact checkers are Ava Dasher and Michelle Harris. Bye, guys. End of message.