Reply All - #50 The Cathedral

Episode Date: January 7, 2016

Amy and Ryan Green’s one-year-old son is diagnosed with cancer and begins an agonizing period of treatment. And then, one night in the hospital, Ryan has a strange epiphany: this whole terrible ordeal should be a video game. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hey, it's PJ. A quick note before we start the show. A lot of people are hearing reply all for the first time this week, and we wanted to direct you to some episodes that you might like in addition to this one. So episode 29, The Takeover, that is one of our favorites. It is about the most teenage teenager that I've ever met in my life and the fake company he started on the internet. Episode 42, Blindspot, has Thruthi, essentially by sheer force of will, turning herself into a real life house and investigating a medical mystery. And then episode 47, quit already. That is about a grandmother who made a Facebook post that accidentally helped topple a government. So check out those episodes, check out the rest of the archives, and enjoy this week's episode. From Gimlet, this is Reply All. I'm Alex Goldman. And I'm PJ Vote.

And we are back. Back in the new year. Yeah, 2016. Welcome to the new year, everybody. Do you have a resolution? Oh, man. I don't have a resolution. Should I?

Is there something you'd like me to do? No, I was just asking for your relationship with yourself. My relationship with myself is so thoroughly broken. I've given up introspection. That's pretty cool. Do you want to hear my resolution? Sure. 2016 is the year of no more seething resentments.

Wow. I got in a fight with somebody at a restaurant. Wait, what? They were yelling curse words, and I was having dinner with, like, my dad and my sisters. They were yelling curse words, and normally I would have. seethed in resentment. So I walked over and said, hey, this is a small restaurant. You're yelling curse words in it. Could you please stop? And what did they do? They said okay, and then they muttered a bunch of things about me that I could kind of hear. So did your seething resentment subside?

Yeah. Huh. Interesting. Okay. So we are not here to talk about our New Year's resolutions, although we have. We're here because Sruti, Pinnam, Naini, has a story for us. Yes, I do. So do you want me to tell people what it's about? Yes, please start it. So this is a story about a family. And this huge thing happens to the family. And it puts them into a situation where they just have no control. Like they've got options, but they're not real options.

And the way that they decide to deal with it is to invite the entire world into this very personal problem they have. And when you verse told me about it, it sounded like unfathomable to me. Like it did not, it didn't make sense. So you went to find out what was going on. Yes. 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, do you have hot wings from yesterday? No, I already ate those. I think that's why I'm suffering this morning. Because you ate hot wings? I ate reheated hot wings. They live in a small house in Loveland, Colorado.

They fell in love chatting online, got married as soon as they turned 20. they moved into this house the very next day. 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 was, 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. Things were going fine. And then right around Joel's first birthday, he started to throw up a lot. And Amy and Ryan noticed he was tilting his head to one side.

The doctor did a bunch of tests and found a tumor in his brain, a particularly rare and aggressive kind called an ATRT. So when you have an ATRT, 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?

Sure. 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 do that. Like, maybe it would be better for him to just die now because I don't think that I can, like, put my kid through chemotherapy for years. 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 brother. 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. One of his eyes is turned in just a little. Doctors may have nicked a nerve when they removed his tumor. He's skinny, and his head is perfectly round. His food goes through that, too. Yeah. Joel went through 10 months of intense treatment. Amy and Ryan spent six, seven, eight hours a day holding Joel in a hospital bed while he got chemo.

And then his parents spent nights feeding him through an IV. And so it would be like this eight-hour pump and it would be this like this white, milky substance that would provide all of his nutrition because he couldn't swallow very well. Even the sweet moments were sometimes hard to enjoy. Like one day it was Amy's shift. She was holding Joel. 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's

going to live. That's what they did for a year. And then in November 2010, just before Joel's second birthday, the doctors called them in and said, we're really sorry. Joel has a new tumor and there's nothing we can do now to cure him. Best we can do is radiate the tumor, ease his pain. And this should have been the end of the story, but it wasn't. There was this one night that Ryan says, was the worst night in all of Joel's illness. Joel had a stomach bug. He was throwing up, got dehydrated, so Ryan spent the night with him in the hospital.

I just remember I'm really wanting apple juice because I 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. I wanted to give him juice because that's what he wanted, but I knew if I gave it to him, then it would be, you know, it'd hurt him. And he's crying and crying, and his cries just get more frantic and animal, and there's nothing that Ryan can do.

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? Can I bring you to that place? The place that I'm in right now? I want to show you what it feels like to feel helpless. But to have received grace. I felt like it would be ultimately encouraging to people. 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. He teamed up with two other people, an indie game designer, a sound designer, he raided his savings, and together they built a prototype. 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, there was Ryan. Oh, good. Hi, everybody. My name is 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.

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. 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 Amy puts on the headphones and finds herself back in the hospital room. You're playing as Ryan. He looks like he's made out of origami. You don't see Joel. You see an empty crib and you can hear him crying. You can move your mouse around the screen and options appear.

You can walk around the room, give him juice, bounce him. But no matter what you do, his crying just gets worse and worse. Okay, buddy, okay, I'll hold you. Stop. Please. Stop. After five or six minutes of this, Brian sits in a chair, drops his head into his lap, and prays. As the player, you can't control when it starts.

The prayer just happens after a while. Not there with you. God, I want to be here with me. And then the crying stops. And Amy says she just lost it. And I was just crying. and crying and I knew Joel was okay. And he was like right there.

Like Joel 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. Coming up after the break, Ryan discovers what might be the world's biggest design problem.

This week's episode of Reply All is brought to you by Squarespace. Squarespace is the easiest way to create a beautiful website, blog, or online store. Squarespace features easy-to-use templates and 24-7 support. And I have a Squarespace site. It is called Goldman.gripe, where I post all my gripes. Or at least I would if I didn't find it so difficult to write them. It kind of puts me in a really dark headspace. I think you can have gripes and be happy.

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Sometimes I feel like my grapes are genuinely, like, a caged animal who has no power in the world and just has to be yelling. Which animal is that? I don't know, a gopher. Gofergripes.com slash Goldman. on PJ's suggestion, I made the website go for gripes.com slash Goldman. If you go there, you can submit your own gripes. And if your gripes are really good, not only will we add them to the website, but we will read them in an upcoming Squarespace ad.

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And there's new stuff added every week. PJ is a serious comedy connoisseur. Serious comedy connoisseur? How would I like to laugh? My co-host, PJ, well, he loves to laugh. My co-host, PJ Vote, loves comedy, talks about it all the time, so he decided to choose something that he really likes. They have a new web series by the people who started.

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totally ad-free. Not that there's anything wrong with having ads and things. That's s-e-e-e-se-o.com, and you can start watching all the comedy you can stream. Welcome back to the show. Before the break, Ryan and Amy decided to develop a video game about their son's battle with cancer. And they named it that dragon cancer. The title's a little misleading.

This is not a game where you go out and slay dragons. Instead, it's a series of immersive vignettes. 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's a piece.

Okay, no, you try. Those are five, right? 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. Kind of slowed him down a little bit, buddy. So he's just slower than most kids. 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. Or there's another scene where you're in the hospital, you're sitting with Joel in a little red wagon, and the two of you are riding down the halls.

The walls are glowing in blue, green, yellow. And the goal is to collect all the chemochemicals. They look like little gems, and you move the controller to grab them. 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 always around the edges of this world, thorny and black and creeping in. No matter how well you do, you will always follow the course of Joel's illness. And at one point, you'll arrive here.

The waiting room where doctors tell us. 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. Well, we're going to have you come back Monday, and we can talk about palliative treatment. This is a moment where words like play and game are a pretty tough fit. It's certainly not fun. But for Ryan and Amy, these heavy scenes are worth it, because they can tell you. contain these other moments that they've been lucky to experience with their boy.

Like, there's a scene where you blow bubbles for Joel and he keeps asking for more and more. And there was kind of for me this beautiful picture of what it was like to have a child that was sick because he would think to yourself, oh, I would do anything I could just to be able to play with him and hear him laugh. I would blow him bubbles for days. So they worked on the game for months. Joel, who everyone said would die after four months, he was alive and well. The palliative radiation killed his tumor. And the next one, and the next.

Amy started calling it the cancer that cried wolf. Joel hit all these milestones that Ryan and Amy had taught themselves not to expect. He turned two and a half and said his first word, uh-oh. He learned to swallow and eat normal food. He turned three and took his first steps. Go! He just became this miracle baby. Amy said that somebody in their church said they had a vision.

She had a vision that Joel would do great things. So anyway, things were going well. Two filmmakers called and asked if they could follow Ryan and Amy around make a documentary about making this game. So there's all this video footage around the game's creation. Yo. There's a con. It's going all right.

Here's Ryan at his computer on a design edit. He's talking to Josh, his partner on the game. Where did Josh go? Josh starts playing peek-a-boo with Joel. I don't know. So you've got Ryan designing a game about Joel, who's sitting on his lap the whole time. You've got his wife, who's helping write scenes in the game,

and she's acting in it. And now they also have six other people in the game. team, developers, 3D artists, a sound designer. I've sat in on some of their design meetings. They all happen on Google Hangouts. I feel like my character always shouts. And I feel like that's... Can you be a little bit quieter?

You're blowing out the speakers. I feel like it's because Ryan always directs my audio. No. No, that's about what. You're just all like, well, do-da-da-da-da. And I'm like, that's just because I'm a better actor than you. Nope.

I'm blaming the directing. You're a bad director. For three years, the routine was the same. Joel would get a tumor. They'd radiate. It would go away. Joel would get a tumor. They'd radiate.

It would go away. This happened 15 times. And then this routine breaks. The doctors tell them, Joel has new tumors that they cannot treat. He explained to us that the tumors that were there, one was in a field we had already radiated. And you cannot continue to radiate an area tumor. much or it can cause brain death. And it was right on the brain stem, where he'd received the most radiation before.

For the first time, radiation was not an option. But Amy and Ryan knew that this couldn't be the end. This is the cancer that cries wolf. So they found an experimental drug trial in San Francisco. And they decided to go. They packed up their whole family, four boys, including Joel, and drove the 1,200 miles. They lived in San Francisco for two whole months and the treatment, it didn't work.

Joel stopped swallowing, he stopped walking, and eventually he needed an oxygen tank to keep breathing. So in March, they drove back home to Loveland. I remember the first night we drove him around the car and he loved that. Like he wasn't doing well, but he loved going in the car. And after an hour of driving around, we tried to get Joel out and he kept pointing and saying go

because in sign language, that's how you say go as you point, and he'd shake his head and point, go, go. And so it was hard because he didn't want to get out of the car. And so you were like, well, maybe we should just drive you around for the next few days. A few days later, Amy and Ryan invite everyone they know to their home. 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 what's your strongest, what's your strongest member? What's your strongest member?

I think it's just realizing that he was going to die that. And that, I don't know. 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.

And even though he'd been terminal for more than three years, years, Amy said that at that moment, she was completely unprepared. 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 still 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. And so the next several weeks are just terrible. She doesn't know what they did this for. She's just trying to pick up the pieces. They have to organize in memorial service, funeral. And then at some point, people are sending her these grief books. People send you a bunch of grief books after your child dies. And like you kind of look at them, but you also kind of just don't, like, because you don't care if your grief is like anyone else is and you don't care what you're supposed to be feeling. But I kind of was like thumbing through them. And one thing I read, about that grief is all of the feelings you have, and mourning is what you create out of those feelings or what you do with them. And so she realizes that the game is now it's become their mourning.

And we had money set aside to like put up a grave marker, a tombstone. And I finally thought, you know, like the gravestone's supposed to be the memorial for him. And like, you're making his memorial. So like, let's take this money we've set aside for this and use it to build the game. And when the game is done, we can always go back and do the gravestone. But just like, I love that we're doing this. Like, I love that we're putting everything we have into this game. And it feels like Joel deserves.

Like, he deserves to have everything from us. All of our emotion, all of our investment, all of our money. Like, I'm sort of glad that it cost us everything. And this brings us to the cathedral. Ryan decides that the only way to capture those final months of Joel's life, and his death, is by setting it all in a cathedral. And not just any cathedral, this will be the place that contains all of their feelings about losing Joel.

And for the player, it would be the climax of the game. So when you walk into the cathedral, you're in this narrow hallway with vaulted ceilings. All the stone is white and smooth. It almost looks like it was carved from a single piece of rock. You leave the hallway, go in, and now the ceiling soars up above you. The cathedral is full of light and you're heading towards the light.

As you move, though, you realize that you're walking very slowly because the cathedral is so large. And you immediately have this feeling of being in a holy place. But Ryan also wanted it to represent the human body, Joel's body. So the pillars twist and turn like ribs. They curve as they rise up into the ceiling. And as you look up into the ceiling, you see that there is carvings of flora and these stone flowers that are embedded in the ceiling,

almost like a garden. I wanted the cathedral to feel alive or full of life, but also frozen. But here's the thing. To Ryan, this doesn't totally describe those last months with Joel. When you fight cancer, you're burning cells, you're poisoning the body, you're doing all these things to kill something. We do all this damage in our quest to like seek life. The cathedral has to show that damage.

So Ryan removed all of that heavenly light, and he snaked these neon tubes along the floor. The tubes started as this idea of all the different things that we had hooked up to Joel throughout his whole illness, whether it be Ivy Nutrition or chemotherapy or antibiotics. And he just kept going, until the player is bathed in neon light. I've in a sense turned it into this neon nightclub.

I mean, there's this sense, I have these neon crosses, and the cross up on the altar is, like, wrapped in a vine of neon, and there's neon vines like crawling the pillars to the left and to the right. He's trying to say, like, these are the unnatural things that we do in order to stay alive. But the crosses, Amy didn't like them. They seemed false. So Ryan removed them. And then he had this thought.

We have all these tubes and things for chemo, but I want to put in the machines that were keeping Joel alive. And so he starts building equipment. Very loud, almost steampunk-type contraptions, that you would press a button to keep them going. The user would have to, like, fiddle with the levers and make things just right so that Joel's getting. getting what he needs to stay alive.

And then we kind of leaned into that even more because there was this scaffolding and there was this huge stained glass depiction of Joel and I. That wasn't done yet. And so you would climb the scaffolding and you'd put in a piece of glass. But then you would look down

and you'd see the indicator for his oxygen or food was running low. So you would run back down the scaffolding and want to like change the dials or press the button and then run back up the scaffolding. But then after, After months of building these machines, he gets rid of them. Why do you decide to take out the machines then?

Like, why does that whole section go? So I didn't want people to feel like they could kill Joel. Like that it was their fault that he died. And then he thinks, you know what, this is all a little morbid. And so on the right side of the cathedral, I replaced the oxygen tank with this huge installation of an amusement park. An amusement park inside the cathedral. Because during those last two months in San Francisco,

the family had loved going to Disneyland. So, for starters... I had this shooting gallery. Can I actually shoot the target? Yeah, you could shoot the target. Like, you can pick up, these little rifles, tethered to the stand. And you aim at these chickens?

You could, like, shoot the animals and they turn into fried chicken. But after months and months, months of work, Ryan decides this amusement park is distracting from the bigger idea of those final weeks, which is asking God for mercy. So he scraps the entire park. Ryan has been stuck inside this cathedral. He spent a year on it, drawing and redrawing those final weeks of his son's life. Hundreds of drafts. In the most recent version, there are these prayer candles.

And every time you light one, you hear a prayer from the night of Joel's death. Lord, my God, let this boy's life return to him. I've spoken to Ryan several times during this whole process. Sometimes he sounds defeated, but other times he's happy and upbeat. And whenever he thinks he finally has it, he shows it to Amy who looks at it and says, I don't think that's right. 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 part of me that feels like we betray the project by finishing it.

But of course, they have to finish it. There's investors. There's a release date. And the thing is, the longer Ryan works on this cathedral, the further away Joel gets. What's disappointing to me is how quickly it fades. Joel, how the memory is. and the person of Joel Fates because he's not here.

He becomes more and more an idea. This game is not him. It's just an echo of him. It's not even the best echo of him. I think that's the thing that I'm struggling with. As we're approaching the end of this, what did we do all this for? Why is it that why do we do this?

The game is coming out mid-January. The cathedral is magnificent, but to Ryan, it 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 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'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.

I get 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. Colling if you blow bubbles. What's your record? You can blow them for as long as you want. I want to play bubbles. Okay. Okay, Jill. And you just keep blowing wobbles.

I love bubbles. Throw bubbles. And at some point, You just walk away. Look, I can catch one. Catch a bubble. He likes to buy them. Reply all, producer Shruthy Pinnamennanini.

I love a bubble. That dragon cancer comes out January 12th. Reply All is PJ Vote and me, Alex Goldman. We were produced this week by Tim Howard, Shrithy Penameney and Fia Bennon. Our editor is Peter Clowney. Production Assistance by Kalila Hold. We were mixed by Rick Kwan. Matt Lieber is the Quar.

quiet stillness of the year's first snowfall. Special thanks to filmmakers David Asset and Malika Zuhali Worrell, who allowed us to use footage from their documentary Thank You for Playing, which is about the creation of that dragon cancer. You can learn more about the film and where you can see it at thank you for playing.com. Special thanks also to Jad Abamrod, Soren Wheeler, Jamie York, Elish O'Neill, John Hillman, and Josh Larson. Our theme song is by The Mysterious Breakmaster Cylinder,

and our ad music is by Build Build Buildings. You can find us at our website, replyall. ninja, or on iTunes at iTunes.com slash reply all. While Shruthy was reporting this story, we found out that Wired Magazine was doing a big article on That Dragon Cancer. There's beautiful photos and video at Wired.com slash that dragon cancer. Thanks to our sponsor, CSO. Go to CISO.com to stream original comedy series like the UCB Show, that's the Uprate Citizens Brigade Show. CISO is 399 per month, and it's ad-free. You can even try the site for free.

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