« Reply All

#50 The Cathedral

2016-01-07

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

This is an unofficial transcript meant for reference. Accuracy is not guaranteed.
This episode is brought to you by a Sana. A saga is an app designed to help teams, plan, organise and execute all the work they do together. It helps you. Make sure nothing falls through the cracks, so you can focus on the work that matters most learn. More. Try us honour for free visit, assign a dot com to get started. That's a ass, a dot com pay its Pga Quickener. Before we start the show Why do people our 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 twenty nine to take over? That is one of our favorites. It is about the most he nature teenager that I've ever met my life and the fake company. He started on the internet episode. Forty two blind spot has, through the essentially by sheer force of weltering herself into a real life house and investigating a medical mystery and then edit forty seven quit already that is about.
Grandmother who made a facebook posts that I certainly help topple a government so check out those episode check out the rest, the archives and enjoy this we submitted from gimlet this it reply. I'm Alex Golden and I'm he gave up and we are back back in the new year. We welcome to the new year everybody deregulation, man, I don't ever resolution- should I do. Is there something you'd like me to do now is asking you your relationship with yourself, my relationship myself so thoroughly broken I've given up introspection three? Do I hear my resolution sure did as they see it, They are of no more seething resentments while they are. Fight with somebody restaurant. What they were yelling curse words.
And I was having dinner with like my data, my sister's. They were yelling Kurds and normally would have saved resentments. Our different said: hey there, the small restaurant. You yelling crossroads in it. Could you please stop and when they do These said, ok and then they muttered about two things about me. Like can hear Circa, resent seething resentment, subside, yap, ha interesting ok, so we are not here to talk about nears resolutions. Are we have we're here? is through the amendment. Any has a story for us. Yes, I do so tell me tell people is about. Yes, please started, so this is really about a family, and this huge thing happened. The family and put them into a situation where they have no control. They ve got options, but they're, not real options and the way they decide to deal with it is to invite the entire you world into this very personal problem they have to.
You ve told me about it. It sounded like unfathomable to me, like you did, not it didn't make sense. So you went to find out what was going on. Yes, Let me start by introducing near to the couple green and Ryan. I chicken not alone in having I already does I think, that's why I'm suffering this morning, I repeated her wings. They live in a small house in Lublin, cholera. Oh, they fell in love. Chatting online got married as soon as they turned twenty one. 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 message: diapers and toys going church every Sunday and then in two thousand nine. They had Joel
when John was borne out. Are you? I gotta tell you at this the other day, if I was twenty five one hell of a cease fire and then Isaac was fun. I would have liked twenty seven yakking NOS twenty eight. I was twenty eight hundred dollars for figure. Things were going fine and then right around jewels. First birthday, he started to throw up a lot an alien Ryan noticed he was tilting his head to one side. The doktor did a bunch of tat, and found a tumor in his brain, a particularly rare and aggressive kind called an eighty arts, so, when you have an eighty archie you 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 fifty percent. Chance of surviving for five years, I double check this and it turns out the. Odds of survival are even grimmer. It's a fifty percent 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 really have to have chemotherapy and take you to myself. Cuz I can't that like maybe it would be better for him to just die now, because I dont think that I can like put my kid through chemotherapy for but then as time more on and by the time we actually, when I heard about the the tumor, then you're just thinking like while fifty percent like but half like we ve got a good shot that he gets through this. What do you think I do? It is easy he's in a hospital, so they're taking care of this is from a home video Jonas Brothers meeting him in the hospital Isaac is two and a half. Looking kindest scared, Georgia is a little over a year old he's lying in a small red wagon hooked up to an ivy
One of his eyes turned in just a little doctors me have nicked nerve when they removed his tumor. He skinny had is perfectly round his food is good, do that to yeah job when ten months of intense treatment Amy and Ryan spent six seven, eight hours a day holding jaw in a hospital bed while he got chemo and then his parents spent nights feeding him through an ivy and so would be like this. It our pumping- and it would be this like this- a white milky substance that would provide all of his nutrition- because he couldn't swallow very well, even though Sweet moments were sometimes hard to enjoy. Like one day it was Amy shift. She was holding Joel by was sitting in his room with him. I was singing Amazon and clapping and he was clapping his hand
and then he was sort of like babble. Thing came along and so like for me, one of those moments that you felt like I'm always gotta. Remember this like sometimes you just have a moment, and you going remember this, the rest of my life, That may be sad because I thought oh like, but the reasoning 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 level like mad, and I think that we need to live our lives like he's. Gonna live, that's what they did for a year and then, in November, twenty ten, just before Joel second birthday, the doctors call the men and sad were really sorry China has a new tumor and there's nothing. We can do now to cure him best. We can do is right 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 worse night, an olive jaws on US jaw had a stomach bug, use, throwing
got dehydrated, so right spend the night with him in the hospital remember him really whining apple juice, cousin, his favorite things at the hospital, but then I give it to him and he just throw up again. I wanted to give him juice that's what he wanted, but I knew if I gave it to him than it would be in who had heard him and his crime king and crying and his cries just get more frantic an animal. And there's nothing that Ryan can do by the end of the night. He has just such sunken eyes, Burgess women 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, jaw would start hitting his head against the wall of his crab. If The Rhine himself started to lose it. He was crying to and then in the early hours of the morning. He lay down and prayed, and I remember that when he stopped crying and he fell asleep. And it was just 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 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 huh. All ordeal reminded him of a video game like you have to get the baby to suck cranks. You keep trying thing give em juice bound SAM talk to him, but the weird thing is in this awful game. None of those things actually work there. All 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
want to show you what it feels like to feel helpless, but to have received grace it. I felt like it would be in ultimately encouraging to people. I remember he really was like. I want to make a game about that day. That show was dehydrated in the hospital and I think that's terrible. That's not a game, and no one will want to play that, like. I think that that word game met like something you do in your leisure time and our the who wants to spend their leisure time reliving, worst moment of a man's life, so I said, do not make that that is horrible break he client. Idea. So, finally, Amy SAD, ok I'll give you three months. He teamed up with two other people and indeed game designer a sound designer. He read it is savings and together they built a prototype. So a few, later it's the game developers conference in San Francisco alongside
assassins, creed, three battlefield for the new Oculist Rift V are headset. There was Ryan everybody, but it was right. I thought you about a personal game that I am making. My single have just one all the data we found. The monster in his brain Ryan is standing in front of a bunch of young tech dude there listening my kind of half hour Lee Jolnes alike and fighting his eight tumor, our doctors fight for only fights and we serve God. That's the god of the living, not the dead. I will give you any 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. Rhine got back and said it was amazing. This person entered
is needed that person that for centuries and that one there's two or three different people who want to fund my game, it really through my mind, because I'm still his leg because of your dehydration, but I told you to never make, and he realizes, like you, never played it like you. Never play This being so, Amy puts on the headphones and finds herself back in the hospital room, you're playing as well He looks like he's made out of origami, you don't see Joe, you see an empty crab 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 bound him, but no matter what you do. His client just gets worse and worse. Ok I hold. You stop, please
after five or six minutes of this Brian sits in a chair drops his head into his lap and praise as the player you can't control when it starts the prayer just happens after a while with you. Please. And then the Klein stops and Amy says she just lost it, and I was just hygiene and crying, and I knew jail was okay and he was like right there like jobs right there with us end and yet it it brought me back to that space and I much more real way than I thought that it Yo Game could Amy didn't need any more convincing. She said: ok, let's do this. Let's pull them
of our savings and make this game. They named it that dragon cancer coming up after the break rain, discovers what might be the world's biggest design problem. This episode is brought few by better for it a new podcast from eighty p. Did by Francesca Ramsay. We all make mistakes better, for it looks at how mistakes have shaped the lives and careers of visionaries and business leaders and helps them think differently about what their working forty you'll hear from an entrepreneur who ventured out on his, and so I went out. I took seven hundred dollars. I had in the bank, but my own pickup truck took some flyers, business cards and
later I had a business and in each hour, rule breaker, whose learn while we all care about work in the first place. You are proud of the work Do you want to be able to tell your friends about you wanna, be able to feel like you're, making a difference, you'll hear how they work their way through their mistakes and came out better for listen on Spotify or wherever you get your PA casts. This episode is brought to you. I saw her picture this a world where you spend less time juggling email meetings and status, updates and more time doing the work that matters. The most your team, that's the world economy. Bill to create a saga is an app designed to help teams plan, organise and execute all the work they do together its built to give teams clarity, you can all understand your goals and how to achieve them together and whatever your next. Object is a sonnet can help reduce the busy work that waste your time from small
companies to global enterprises. More than a million teams across a hundred and ninety five countries get work done with Sata learn more and I s honor, for free visit, assign a dot com to get started. That's a stay on dot com This week's episode of reply all is brought you buy Square Space square space is the easiest way to create a beautiful website, blog or online store scarce based features, easy to use templates and twenty four seven support, and I have a square. They say it is called Goldman dot grape, 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 hair space. I think have grace and be happy that I think there's such thing. There's a lot of joy in a lot of your griping. What's full about my griping. I think it's the that you notice the world. May I think they're, like what
women like rather on the world's everything so beautiful, I want to wait upon about it in Europe on the road and, I might add, of rainbow I don't like rainbows, maliciously you're, seeing things sometimes I feel, like my great, are genuinely like a caged animal who has no power in the report with interest as to be yellow which was that a gopher up up up up up up up up cover, ripe, Saigon, such continent. So, on pda suggestion, I made the website gopher grapes, dot, com, Slash Goldman! If you go there, can submit your own bribes and if your grapes, a really good, not only will we ever to the website, but we will read them in an upcoming, scarcely said: Go there now and start your free trial say today at squares, based outcome makes make sure for could reply. To get ten percent of your first purchase and show your support for apply all this makes it sort of reply. All is brought you by sea, so see so. A premium comedy streaming servers, it's like a curated comedy channel. They have classics like Python and kids in the hall, and they have regional series featuring very funny people and theirs.
I've had it every week, page It is a serious comedy, connoisseur and serious comedy connoisseur haven't I liked the latter might cause Pga well He loves to laugh at my CO host Pga vote was comedy talks about it all the time, so he decided to choose something that he rather they have. A new website is by the people who started the outrages and regain theatre, which is like the theatre where every comedian that you ve never heard of him love. If you're me came out of so three body Moynihan in all our elder cumbered olive em. So I'm really, It is the other stuff you can watch is there right now, totally free and ad free, there's, no credit card required to try decide if you want access. The foresight it's three ninety nine a month delicacy so and get twenty four seven streaming of classic shows and never before seen, originals totally ad free
now that there is anything wrong with having ads and things. That's s. E g as Oda com and used are watching all the comedy you can stream welcome back to the show. The break Rhine and Amy decided to develop a video game about their sons battle with cancer, and they named it that dragon came, The titles is a little misleading. This is a game where you go out and slay dragons. Instead it's a series of immersive vignettes, the first seen as at the pond. You start off as a duck huddled 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
actually jaws, laugh as you hand and pieces of bread, and he throws them into the water. You know you throw five life. The kid speaking here, as I said Jones Brother, like he, can't talk, screw. You know, don't got sick right returned when I thought about it, buddy produces slower than most kids and theirs. Other vignettes, like there does one time in a hospital when to keep jaw entertained Ryan blew up. Surgical globs, like believes its gorgeous scene. Where you see Joel floating into my time sky towards the moon. Holding onto these surgical balloons,
Then you see these black burs appear from the corner, that's the cancer and it popped the balloons one by one Or there's another scene where you're in the hospital you sitting with job in a little red wagon and the two of you, a riding down the hall the browser glowing in blue, green, yellow and the goal is to collect all the chemo chemicals. They look like little. Gems and you move the controller to grab them, and throughout these scenes you pay Many games, you discover rooms, listen to voice mail from any there's, even. The levels you can beat, but the cancer is always around. The edges of this world, thorny and black increase and no matter how well you do, you will always follow the course of jewels illness and at one point you arrived
here, the waiting room where doctors tell Amy and Ryan the Jaws cancer terminal as they break the news. Inserts pouring into the room and Ryan slowly starts a slip under the water think about already today or going back on Monday. We can talk I had a dream. We're very good at end of life care, very good at managing cake and masking symptoms. Like This is a moment where words like play. And game are pretty tough fit. It certainly not fine. The Rhine and Amy these. We see this are worth it because they contain
these other moments that they ve been lucky to experience with their boy. There's a scene where you blow bubbles for jaw and keeps asking for more and more, and there was cut off. 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 them and hear him laugh. I would blow him bubbles four days So they worked in the game for months Jaw who everyone said would die. For months. He alive and while the path radiation killed his tumor and the next one on the next Amy started, calling it the cancer that quite wolf jaw had all these milestones, the Rhine and Amy had taught themselves not expect heat. Two and a half and said his first word. Oh
You learn to swallow and eat normal food. He turned three and took his first steps. You ve got his wife, whose helping right scenes in the game and she's acting in it and now This miracle babies Amy sad that somebody in their church Had they had a vision, China Vision that Joel would do great things. So, anyway, things are going well to fill me. Is called and asked if they could follow right and Amy around make a documentary about making this game so there's all video footage around the games, creation. You Here's Ryan! It is computer on its sign. At he's. Talking to Josh his partner on the game will just go. Josh starts playing peekaboo, which all
So you ve got Ryan designing a game about Joel whose sitting on his lap the whole time you ve got his wife, whose helping right scenes in the game and she's acting in it, and now They also have six other people in the team developers. Treaty, artists, sound designer I've, in on some of their design meetings? They all happen on. Google hang out you, like my character, always shouts field, maybe a little bit fighter. You're born at the speakers, I feel like its Ryan, always ex my audio and very bowling alley ear to the star. Like wolves It is a dynamic business, that's just because I'm a better now and blaming the directing you're bad director for three years, the routine.
The same job get a tumor they'd radiate, it would go away. Joe would get a tumor that radio it would go away. This happened fifteen times and then this routine breaks. The doctors tell them jaw has new tumors that they cannot treat. He explained to US The two measures that were there, I'm one was field. We had already radiated and you cannot continue to radiation area too much hurt can cause brain death and it was right on the brain stem I'm for he'd received the most radiation before, for the first time, radiation was not an option, but Amy Ryan knew that this could be the end. This is the cancer, the cries wolf, so they found an experimental drug trial in San Francisco and they decided to go. They packed up their whole family for boys, including jaw and drove them Five hundred miles. They lived in San Francisco for two whole months and the treatment it didn't work
Joel stop swallowing you stop walking. And eventually he needed oxygen tank to keep breathing. So in March they drove back home to level, and I were the first night of around the car and he loved that, like he was it, it wasn t well be loved going in the car hour of driving around. We tried to get chill out and he kept pointing and saying go cuz of the sign language of how you say: go as you play any chick is head in point: go go Does he didn't wanna get out of the car, so you are like will? Maybe we should just driving around for the next few days? A few days later, Amiens an invite everyone. They know to their home. We had a prayer night, just praying for him to be healed and wages had everyone over and we spent you know hours just worshipping and praying there's video footage of this night it's in their small living room. There family members, friends, people from their church community line is holding jaw and their prey
What we have is the heroes that's all. We have we hope we. How does your resurrection? So why would help us all I have is my disappointment. That's what I start with, but I hope that you make it right. What's your story is an American? I think this is really he was going to die, and I dont know it's the it's that space of being with a bunch of people that desperately.
Want the same thing that you will enter crying out for that grace and mercy to convey the situation jail died later that night, it was March thirteen twenty fourteen, And even though he'd been terminal for more than three years, Amy said that at that moment she was completely unprepared. I feel like it away, 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 a deadlock which is, while the new sorrow that your story, because it's weird and I still get that if we heard of but because we still believe that she could live, I feel like we didn't go through all the processes. I also 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 us like I love that were putting everything we have considered this game.
They have to organise a memorial service funeral and then at some point, people are sending her. These grief, books, people central bunch of grief books after your child eyes, like you kind of look at them, but you also cut of just don't like cause you don't care of. Your grief is like anyone else's and you don't care what suppose to be feeling, but I kind of like thumbing through them. In one thing I read talked about that grief is all of the feelings you have and mourning us 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 morning, and we had money set aside and like put up a grave marker tombstone. I finally thought can only We ve done supposed to be the memorial for him and, like you making his were more. Also 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 us like. I love that were
everything we haven't said this game and it feels like told deserves like it is to have everything from us. Oliver emotion, Oliver 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 jewels life and his death is. Setting at all in a cathedral and not just any cathedral. This will be the place that contains all of their feelings, about losing jobs and for the player. It will be the climax of the game, So when you walk into the cathedral, narrow, hallway, with thought it ceilings all the stone is white in smooth. It almost looks like it was carved from a single piece of rock
if the hallway go in and now the ceiling sores up above you, the cathedrals fall of light in your heading towards the light, as you 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 to represent the human body jaws body, so the pillars twist and turn like ribs they curve as they rise up into the ceiling in his you look up in the ceiling. You see that there is armed carvings of of floor, and these stone flowers are embedded in the ceiling was like a garden. I wanted the it ought to feel alive or full of life, but also frozen. But here's the thing to Ryan. This doesn't totally described as last month's were jaw when you fight cancer, your burning cells, your point the body, your
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 any snake these needs tubes along the floor. The tube started out to this idea of all the different things that we had hooked up jaw throughout his whole illness, whether it be ivy nutrition or he might there p or antibiotics, and he just kept going until the player is bathed in your life. In this sense turned it into this neon night club I mean business. This the sense I have these neon crosses renders the cross. Upon the altar is like wrapped in a valley, of neon and there's there is need, Vines like crawling the pillars to the left him to the right, he's trying to say like these. The unnatural things that we do in order.
Stay alive, but the process Amy didn't like them. They seem false, so Rhine removed them and then he had the spot. We have he's tubes and things fur chemo. But I want to put in the machines that were keeping Joel alive, and so he says, building equipment, very loud, almost steam punk type can contraptions that you would press a button to keep him go. The user would have to like fiddle with the levers and make things just right so that the jewels getting what he needs to stay alive. And then we can lend into that even more because there is the scaffolding and there is a huge steam glass depiction of joy that wasn't done yet and so you would climate scaffolding and you'd put in a piece of glass, but then you'd look down and you see the indicator for
oxygen or food was running low, so you'd one back down the scaffolding and wants alike, change the dials were pressed the button and then run back up the scaffolding. But then, after me, of building these machines. He gets rid of them Why do you decide to take out the machines than the report as a whole section go, so I didn't want people to feel like you could kill jaw like that. It was their fault that, he died and they things. You know what this is all this: a little morbid and so on. The rights the cathedral replaced the oxygen tank with this huge installation of an amusement park and amusement Park inside the CAFE because during those last few months in San Francisco the family had loved. Two disneyland. So, for starters, I had this: shooting gallery can actually shoot
yeah. You can shoot the target like you can pick up. You can pick out these little rifles tethered to stand and you aim at these chickens ecologically animals and aid turn into fried chicken. But after months and months of work, Besides, this amusement park is distracting from the bigger idea. This final weeks, which is asking God for mercy, so he scraps the entire park. Lion has been stuck inside the cathedral, he spent a year on it, drawing redrawing this final weeks of his sons, 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 native Joel's death boys would see Unless 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 any 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. Although things we want it to save, you said the coat something else when doom
couldn't finish it and it's hard cuz. 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've betrayed a project by finishing it, but of course to finish: what there is investors? There's a release state and the thing is, the longer Ryan works on this cathedral, the further away Aw gets what's disappointing to me is how quickly it feeds jaw how'd ya out the memories and the person of joy fades because he's not here. He said it becomes more more an idea. This this game is not him assistant, echo of him. It's not sign even the best echo of him. I think there s a thing than struggling with as we ve as were approaching the end of this. The wood with which we do all for why? Why is it that 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 and cakes sure. Rhine was able to finish the place that comes right after the cathedral the scene where you say goodbye to call you find yourself in a boat next door, there's no oars, you headed towards an island. You get ere you walk along a small path, and you end up in hearing in the woods. There's a picnic blanket and you're sitting on it member of the jail dragging a here. I love it Why
and around him all the things he loved boast, a huge stack of pancake Way way, bigger than him a little dog and now I got one and bubbles you can blow him bubbles, there was a guy can catch kind. Good bubbles, what you run for as long as you're, ok, ok, Joe
And you just keep going bubbles. And at some point, and you just walk away, I can catch. their bows man. You can't jabber lights, humane. Reply. All pretty said she been in any danger in cancer comes out January, twelve.
Reply, always PDA vote and me Alex Goldman. We are produced this week by ten how Treated, criminality and fear. Bennett are editor, is Peter clowning production assistance by cleaver hold. We were mixed by requiring that labour is the quiet stillness of the years. First snowfall special thanks to fill there's David Asset and Moluccas, you Holly Whirl, who allowed us to use footage from their documentary. Thank you for playing, which is about the creation that dragon cancer- you can learn. More, the film and where you can see it, thank you for playing dot com. Special thanks. So to jam, ROD, Sorin, Wheeler, Jamie York, I ll show Neil Job human and Josh Larsson. Our theme song is the mysterious break, master, cylinder and our add music is by bill buildings. You can and us our website reply all that ninja or on Itunes at Itunes. That calm, Slash, reply all well sure was reporting this story. We found other wired magazine, Mr Big article on that dragon cancer. There's beautiful vote
in video at wired dot com, slash that dragon cancer. Thanks to our sponsor, see so go to sea. So Doc, To stream original comedy serious, like the U C, B, show that the upper Citizens Brigade show Seas was three ninety nine per month and its ad free. You can even try this site for free, that's see so dot com as E s, o dot com and square space, build it. Beautiful use the Africa reply to sign of square space at Square spaced out come and get ten percent off. Your first purchase.
Transcript generated on 2020-02-13.