"Mr. And Mrs. Green." "I'm sorry." "It's not good news." "Your son Joel has had a recurrence of his brain tumor." "Any recurrence means the chemotherapy has failed." "We're very good at end-of-life care." "We're so sorry." "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!" "We're very good at end-of-life care!" "We're very good at managing pain!" "And masking symptoms!" "At the end of life!" "Hey, guys!" "Shhh." "Shh, shh, shh, shh, shh." "It's okay, Joely, shh." "Don't throw your head, buddy, don't." "Do you hear a baby crying?" "What do you think of that?" "Is there a baby crying?" "Oh." "Why?" "Yes, he's crying." "Here we go!" "Bouncing around!" "Do you like that?" "Too funny!" "Funny, yeah." "That's so funny!" "Hi, Joel!" "Hi, Joel!" "Dad!" "Do you see them?" "Hi, Joel!" "Dad!" "Hey, buddy!" " Mwah!" " More?" "Thank you, Elijah." "Mom!" "Dad!" "Wa-wa." "What do you think?" "You want water?" "Want a drink?" "So what do you think, Isaac?" "He just " "He's in the hospital so they're taking care of him." "And that's how he gets his food." "His food goes through that tube." "Yeah!" "Yeah." "You want to touch him?" " Yeah." " Yeah?" "Why don't you just pat his cheek, okay?" " Okay." " Okay." "Pat his cheek." "Yes." "See?" "It's Joely." "You know, he doesn't smile very much?" "But when he saw you, he smiled!" "That's pretty great, huh?" "'Cause you're his big brother!" "Yeah." "Yeah." "You like pulling your brother?" "Yeah." "Yeah?" "Great job, Isaac!" "♪♪" "Ask if their refrigerator is running!" "Yeah!" "He's started standing and signing!" "Ready?" "Go!" "Go, go!" "More?" "More?" "!" "Okay, ready?" " I'm recording." " Okay, go ahead, Chris!" "Father, we thank you for this opportunity to come together as a family and to share this meal together." "We just give you all thanks, Father, on this Thanksgiving day, for the restoration that you are making in our family, for the restoration that you are making in each of our individual bodies on a daily basis." "You're home!" "We missed you!" " I'm hungry." " Oh, you are hungry?" "Yeah." "You're always hungry." "We're tomorrow maybe gonna do a lunch thing." "I knew that we wouldn't enjoy the time we had left if I was constantly trying to prepare myself to lose him." "And eventually I came to the conclusion that I don't think it would really help me to mourn him in advance." "That I would much rather live like he's living than live like he's dying." "And Ryan completely went there with me, too, and I think we're both really glad because it wasn't 4 months, it's been 2 1/2 years now." "And, so, boy, to spend 2 1/2 years perpetually thinking your son's about to die would be miserable." "We've talked a lot about what we're going to include in the game from our lives and, unlike a movie or a book, where you have to have these moments that all string together, we can just say, "Here's a moment."" "It's like these little glimpses into our life." "It's much more his creative outlet than it is mine." "There are just things that Ryan and I have shared that no one else has shared with us about Joel and about raising -- raising a child that's supposed to die." "When people think about what a video game is, it's hard for them to wrap their head around what it is that we're doing." "But I think most people wouldn't have a problem with a serious film or a book that talks about tragedy." "You want to go swing?" "More." "Of what?" "I wanted to create a space for me to talk about my son." "And for other people to love him and to have the joy that I have being his father." "Pbht!" "Pbht!" "It was something that I've heard Ryan talk a little bit about, that he said that he just doesn't want" "Joel's actual cry in the game." "Which we'd never talked about." "He just kinda, you know, was like" ""No, I'm not putting his cry in the game."" "And when I heard him say that, I thought," ""Well, I don't know why you wouldn't."" "Like, if we're gonna put his laugh in the game," "I don't know what's wrong with putting his cry in the game." "I think that subject of cancer, people are already sensitive to it and they're already like, cringing that you would even talk about it." "And so I feel like crying would be pushing it just over the edge." "But if you're having " "Okay, so, just -- so go with me here, you're having someone crying in the game, so someone recorded their child crying." "But maybe that child was healthy." " Does it make a difference?" " I don't know." "Like, I think there's so much that I don't know because we're doing something that people just don't do." "Mom, can I do some?" "It's like, I don't know, do you point a camera at somebody on their death bed?" "Like, I don't know." "But don't you assume people playing the game will assume that's Joel's cry, even if it's not?" "I mean, that's kinda where I go with it." "Perhaps." "I mean, people " "They'll assume it's his cry anyway." "People have asked me, and I can say "No, it's not."" "So you just like being able to say " "I like being able to say "No, that's not his cry," you know?" "And I would love to say, "But that's his laugh."" " Sure." " So..." "More bubbles!" " Bubble!" " Bubble!" "Down?" "Okay." "Whoa!" "Gosh, he keeps falling." "Elijah might have it." " More?" " Bu" "Hey!" "Say please?" "But, I might be able to turn this into butter, though." "More apple?" "Apple?" "I'm gonna turn this into butter!" "Can you say please?" "Yeah." "Good job!" "I'm gonna turn this into butter!" "Who wants to see me turn this into butter?" "That's not gonna turn into butter, dude." "Aww." "You know, I met Amy in theater when I was 16 and she was 15." "You know, we were doing acting and stuff like that, and you approach the end of high school and you're thinking," ""Oh, I'm gonna go to LA and I'm gonna be an actor," you know?" "Or "I'm gonna go to New York and be a play writer." "I'm gonna be any of those things." "I'm gonna make art for a living."" "And then, you get a job, and you get married, and you get a mortgage, and you have kids, and all of a sudden, you know, 12 years later, and you're not doing those things." "And yet, it wasn't until the last four years that I had anything real to say." "Oh!" "Don't throw it!" "Do you want help?" "Do you want help, Joel?" "Okay, I took some reference photos of our house..." " Uh-huh." " ...which is messy" "But the cleanest that you'll ever see it, so." "Is your whole house going to be in the game?" "I would love to have the floor plan laid out." "Let's see here." "Both sets of boys share a room." "So Joel and Elijah share this room." "And Joel has the Pack 'n Play." "I also want, like," "I do want Joel to make an appearance in the game." "I don't really want to show him on the suffering parts because that might be too much, but there might be some moments -- when he's learning to walk or when he's playing with his brothers." "Like if we could create like a little avatar that -- that is cute, you know?" "Like we talked about before," "So often, facial expressions are just hard to convey in a game." "Dead eyes and waxy faces." "This is where, like, my limits as an artist are." "Making like a blank expression that doesn't look angry, you know?" "Actually, I have a model." "I was experimenting with this idea of only having the lips and the nose." "What do you do with the blank ocular cavities?" "Right!" "I don't know." "I mean, we could also try like, no nose, no mouth, no eyes, and just have eyebrows or something." "I wonder if people would see that character like with the audio and stuff, if their brain would fill it in and it would be like they're imagining the face, you know?" "I think that actually might be really effective." "And I want to remain kind of abstract because it's more about the emotion than it is like, recreating reality, you know what I mean?" "What do you think of that?" "Oh, guys." "Give Joel some bread." "Mom, he threw the whole piece!" "Well, Isaac, you've got to give him little pieces." "He doesn't understand." "Here you go, Joel, here's a piece." "Okay, now you throw it." "Joel's almost 5, right?" "Yeah." "But he -- But he can't talk." " That's true." " Yeah." "3-year-olds can talk." "Yeah, I know." "Why can't Joel?" "Well, Joel got sick right after he turned one, um..." "It kind of slowed him down a little bit, buddy." "Yeah, so he's just slower than most kids." "I think, eventually, he'll catch up." "You want one?" "Isn't that funny?" "Hi!" "What we have, it says," ""The father begins to tell the story of the brave knight Joel fighting the dragon, Cancer." "The kids begin to ask questions and the scene shifts into an 8-bit arcade-style game."" "So, we have this little character running and there's like -- and there's, like, flames coming of like, digital -- like little 8-bit flames coming out from behind him and stuff" "And he's like running and running and he's jumping" "Yeah, yeah yeah." "Like everybody thinks video games are." "And here's what I would love." "I know that you don't want too many elements of like real game play in the game, but I would love if, in this scene, the player gets to where they're actually having fun in this" "and they have a moment of like," ""I was having fun in the middle of this cancer game."" "People going through grief have to do that anyway." "Does that make you uncomfortable?" "Should we have the kids read these parts?" "Like when we're really recording it?" "Yeah." "They want to." "Hey, guys!" "I want to tell you a story." "It's a story of a very brave knight named Joel." "Joel, the baby knight?" "Yes." "Joel, the very brave knight was being chased by a dragon named Cancer." "'Cause of his tumor?" "Yeah." "So, Joel has armor?" "Like a sword and a shield and stuff?" "Mm-hmm." "And he's not the only one who ever tried to fight this dragon." "You know, some brave knights, they fought this dragon and lost." "And some are able to drive the dragon off." "And they can go home and they can quit fighting for a while and their kingdom is safe." "The bad dragon is going to kill Joel." "Joel is going to lose." "Mm, why do you say that?" "'Cause Joel is just a baby!" "Babies can't kill dragons." "You're right." "A baby can't kill a dragon." "But that's the best part of the story." "God fights for Joel!" "He fights that dragon, Cancer, right with Joel." "And we know that God can win, even if Joel can't." "Well, what about Tim from church, Mom?" "He died from cancer." "Wasn't God fighting for him?" "It may have seemed like the dragon won because Tim died, but we know that Tim is in Heaven and that he is with God and that God is so proud of him." " It's good." " You like it?" " I do." " Are we gonna do it?" "I think so." "Ah!" "Yes!" "I really like this scene." "And I was worried you wanted the whole thing to be poetry." "And I think the poetry is really effective, but an hour of poetry is not fun." "What if it doesn't -- Whatever." " But I love you." " Love you, too." "Thanks for working on this with me." " It's good, baby." " I like that you like it." "No, it is good, and I like these " " I like these scenes." "Okay." "Gimme a kiss." "Oh... okay." " We didn't fight at all!" " It was close, though." "I saw it on your face." "Hey, Joel!" "Can I blow on your belly?" "I'm gonna blow on your belly!" "Ready?" " Pbht!" " Pbht!" "That's right!" "Ready?" "Pbht!" "Daddy." "Want more?" "More?" "Want more!" "There you are!" "Where'd it go?" "Where'd it go?" "Oh, there it is." "Again!" "Pbht!" "Where'd it go?" "I don't know." "Where'd it go?" "I've got like 20 versions of each." "If the rest of the game plays exactly like it does now..." "Mm-hmm." "...you're just exploring and experiencing narrative by moving around and clicking on icons." "Right." "So does that mean you would be clicking on icons?" "Does that mean, you know, how does that action actually..." "Well, I think everything needs to be accessible through point-and-click at this point." "You know?" "Or if there's certain things that you have to do, like with regularity, like if you have to feed him through an NG tube, like you couldn't do it too fast, otherwise it would pop off the tube and squirt everywhere." "We even still have a stain on our ceiling." "But we don't -- we don't remove it 'cause it just reminds us of that period of time when we were just like four months of feeding tubes." "We don't remove it 'cause we're lazy!" "No, I don't!" "I've thought about wiping it down." "No, I've thought about wiping it down." "I'm like "No, I'm not gonna wipe it down!"" "I like how noble your lack of cleaning is." "I'm not going to." "Like, "It's because it's an emotional " "It's a mark!" "It's because you didn't want to get up on the ceiling and wipe it off." "It's an emotional stain, babe!" " Whatever." " It's an emotional stain!" "It matches your heart." "Yes." "Okay, guys, so we're gonna do this scene." "And this is something that Mommy wrote, that was kinda similar to a conversation you guys had a long time ago." "We don't remember it word-for-word." "Okay?" "So what we did was, we wrote it out and so where you see where it says "Dad?"" " Mm-hmm." " I'm gonna say that line." "I'll say "Caleb" and Isaac says "Isaac."" "Right." "Do you see that Isaac?" " Yes." " So, like " "Don't get embarrassed, okay?" "Well, we won't worry about that because we're just gonna like, we're gonna sit on the couch, and we're kind of like, pretend we're in bed right now." "Okay?" "Okay, you ready?" "Hey, guys!" "I want to tell you a story." "It's the story of a very brave knight named Joel." "Isaac, you say " "Joel, the baby knight?" "Yeah!" "Say it again." " Joel, the baby knight?" " Yeah!" "Joel, the very brave knight was being chased by a dragon named Cancer." "Because of his tumor?" "Yes." "Isaac?" "Well, that dragon is going to kill Joel." "Joel is going to lose." "Why do you say that?" "What do you think of that?" "Wait, hold on." "Wait." "Hold on, Caleb." "What do you think of that?" "Does that make you sad?" "No." "Do you not want to read anymore?" "I still " "Okay." "Start here." ""Because Joel is a baby..."" "Because Joel is a baby and babies can't kill dragons." "Okay." "That was pretty good, guys." "Now should we listen to some of it?" "Yeah." "You guys did a really good job." "But some are able to drive the dragon off." "And they can go home and they can quit fighting for a while and their kingdom is safe." "You know, Joel has been fighting the dragon for a long time, huh?" "A long time?" "Not a question." "A long time." "A long time." "Like you're like, have you ever been in the car so long you're like,"Ugh, I'm in the car soooo long."" "Like that." "Because..." "You say, "Well, that dragon..."" "Well, that dragon is going to kill Joel." "Joel is going to lose." "I feel pretty weary right now, emotionally." "You know?" "Umm, it's interesting because when you're creating art, there's a certain level of abstraction." "It's not real." "And so even in the midst of working on a game about my son, who's terminally ill, there's a certain escape." "And that's what kind of ironic about it, right?" "It's because a lot of times, people play games to escape." "And even making a game allows me to escape, but... you can't escape forever." "Da-da!" "Okay, go!" "Ma-ma-ma!" "No?" "Okay!" "He's still having some cough, Wanda said." " Uh, a little bit." " Okay." "But he always has a cough." "Okay." "Any runny nose?" "I don't think so." "Runny nose, babe?" "No." "No more than we've seen or we're used to used to." "And no fevers?" "No fevers." "He's just " " I don't know." "He's just suspended there, you know, asleep, and..." "It's easy to think about it in theory until you actually see it, you know?" "And I've been able to see it a couple of times but you don't get used to it." "He's just so, I don't know, helpless up there, you know?" "I hate this room." "I didn't used to." "For, um, for a moment, it was an adventure." "I was cast as the compassionate and caring father, holed up with his fragile son in a small cleft in the rocks, the storm raging, waves ripping at the sharp black rocks below and enveloped in my arms, he feels safe." "And I'm holding him firmly, trying not to slip." "Because if you hold tight enough, nothing will take him." "Right?" "Are you gonna wake him up?" "That's how he sleeps!" "Oh!" "He's already awake!" "So that was when he was 1 year old." "About a year later, when he was 2." "And this is probably six months after that." "And I don't even remember " "He was probably 3 for this one." "And then we decided, once we had the full set, that we had nothing else to give so we went ahead and let him put his butt on the wall." "They let us put his butt on the wall." "Let him." "They let us." "So..." "Then we said we had the complete set and he could never come back, but we're back anyway." " So it didn't work." " Didn't take." "What do you see?" "Go ahead!" " More!" " More what?" " More." " Tickle?" "Ba-ba-ba-ba!" "Yeah?" "Ahhh!" "No?" "Ba-ba!" "What does this mean?" "Up?" "Itsy bitsy spider?" "Ba-ba!" "Spider?" "Spider!" "Yeah, spider!" "Yeah." "♪ The itsy bitsy spider went up the water spout ♪" "♪ Down came the rain and washed the spider out ♪" "Can you do it real quick?" "Um, so hand position for "more" is like this." "Go like this. "More."" "Together?" "And while we're at it, let's do a few more." "This is gonna be "brother."" "If you're watch any videos with babies with hand signs, they're very sloppy." "You kinda have to know what you're looking for" "And you could also do a "no more."" " "No more" is shaking?" " Mm-hmm." "So I wanted to reflect that here." "And probably just exaggerate that a little bit more." "Wait, so he's just going, like, up and down?" "You know, just " "Okay." "Yay, Joel!" "You did such a good job!" "Go!" "Hey, Ryan!" "I'm on my way home from the clinic and probably won't be too much longer but there's a little bit of traffic." "Um, but you know how they celebrate off-treatment day?" "So on someone's last day, they always like, bring them a cake and they sing to them like," "♪ "Happy off-therapy day to you!" ♪" "Anyway, that happened today." "I mean, it happens a lot." "But today, I cried." "I just really want that day so bad, you know?" "My role a lot of times is to build the game in 3D." "I have to play through it over and over and over again." "So, whenever Ryan speaks," "I added the ability to press a button to skip that part." "And what surprised me about that was, there's a certain emotional feeling that you get from just skipping the audio over and over again." "It almost feels like you're trying to skip past the soul of the game." "I can only do it so much before, like, needing to take a break." "Just because emotionally it's very odd." "Over and over again, I have my doubts about, like," ""Can people love Joel?"" "And I just know, like, they can't love Joel the way we love him." "But I think that's the big experiment." "They're gonna push the boundaries a little bit to say, "What can you experience emotionally in a video game?" "How can you connect?"" "It will have to be love itself and not the love of Joel that makes this game work, I think." "Hi, buddy!" "Can I try?" "Let Joel try." "Joely!" "You ready?" "I think in America, we're very afraid of death." "We don't like to talk about it." "We hide it behind closed doors." "I think that we're so afraid of death because we don't really believe that there's life after death." "And I think that when you're brought to that moment of realizing," ""Do I really believe in heaven or don't I?"" "I think being faced with Joel's demise," "I kind of had to come to that point of " "Do we really believe in heaven?" "I think that allows us to come face-to-face with the fear of death and kind of move past it." "And that's something that I want to articulate." "I want to bring players face-to-face with that shadow of death and ask them what they really believe." "Da-da!" "Da-da-da!" "Hi, Joel!" "I found you!" "He's so excited to see you!" "Ahh." "Okay, okay, okay." "So is this -- what kind of paper is this in India?" "This is actually part of the India Times Network." "Whoa!" "What are all of those?" "It's just a bunch of Japanese links." "People like keep picking it up." "I mean I wonder if, like, in other countries this is more..." "They see games in a different light than they do in America." "Like they're " "Like they're more accepting of seeing it as something culturally significant." "It says "That Dragon, Cancer,"" "a game rapidly gathering pace and respect in the indie scene, may still be very " "It still may be very early in its development but has the makings of something unusual and interesting." ""Asking Green about the reasoning or indeed wisdom of bringing these things together and he calmly underlines that this is what creative people have always done when faced with the insurmountable -- create." "Hmm, that's good." ""That Dragon, Cancer" is already a big success." "I'm looking forward to see how it develops in the long journey towards release and find myself praying with Green for his son both in the game and in real life." " Hmm." " Does it have comments?" ""I keep hearing about this game and it keeps annoying me that Joel's dad is turning his struggle into a piece of interactive entertainment." "It's like making a video of your kid dying and then posting it on YouTube." "I'm sure the guy has convinced himself that he's got good intentions, though I notice he's not yet thought of any specific ones, but I have to say that I feel he's just... himself" "and this whole endeavor is just self-indulgence on his part."" "People are harsh." "Hm." "You ready?" " Yes, we are." " Okay." "How are my levels?" "Back up three inches for me." "Fear is cancer's preservative." "Fear is cancer " "Fear is " "Fear is cancer's preservative." "Cancer's embalming oil." "And you, 'o accuser, are fear's oil salesman." "So, Ryan." " Here's a thought." " Hmm?" "If you could like put your hands around the neck..." "Yeah!" "Yup." " ...of cancer " " Yeah." "It's like you got it pinned down and " "Yeah." "You're really gonna take your time with it." "Yeah, while I, like, collapse his throat." "Yeah, yeah, yeah." "Like, you're -- like you're enjoying it." "Hey, you know what I want you to do?" "Squeeze the... out of this while you do that." "Fear." "I'm liable to cry." "Choke that pillow." "Fear is cancer's preservative." "Cancer's embalming oil." "And you, 'o accuser, are fear's oil salesman because you're a snake." "You're a serpent." "A dragon with snuffed-out coal on his breath, molting, talons broken from the struggle to free yourself of your own skin." "You, 'o accuser, are fear's oil salesman." "And you, 'o accuser, are oi" "Fear's " "And you, 'o accuser, are oil's " "And you, 'o accuser, are fear's oil salesman." "And you, 'o accuser, are fear's oil salesman." "'Cause you're a snake." "You're a serpent." "You're a dragon with snuffed-out coal on its breath." "Hold on." "I think we'll be able to put it together, from that stuff on." "Okay." "It's like I'm disappointed with God." " I'm angry at the devil." " Mm-hmm." " You know?" " Mm-hmm." "Amy has this way of being able to keep her head above water." "And a lot of times when we get hard news, she's very quick to assume everything's going to work out." "And I just think that that is an important aspect of our battle with Joel is, in the middle of drowning, choosing rest." "This will be a kind of an autobiographical game about our life fighting cancer." "Wow." "And then that's him." "That was taken a couple of weeks ago." "He's 4 1/2, so..." "That's really brave." "Thank you." "A lot of the effect is through the audio so that's why we suggest headphones." "Gotcha." "Go!" "It's kind of weird to say it but like, fighting cancer is kind of a game." "You know, It's like a game in our life where we're trying to find just the right formula to, like, to-to save our life, you know?" "To save my son's life." "You know?" "And that's a mechanic." "And so, like, when you start seeing the world through the lens of "What are mechanics?"" "And "What happens when mechanics fail?"" "Like, I think you see the potential of what games can be." "Hey, babe, just got done at the doctor." "Umm, now they think that maybe he's throwing up all the time because he has acid reflux, so..." "Sunset looks pretty from here." "Better than the muted colors of this hospital." "He won't stop crying." "I don't blame him." "And I'm holding him firmly, trying not to slip." "Because if you hold tight enough, nothing will take him." "Right?" "He sleeps." "Thank you." "Thank you." "So, uh..." "Excuse me." " Thank you." "Uh, take care." "Man" "One of the first things people ask me is," ""Was it kind of strange showing a game about terminal cancer to this environment?"" "I'm thinking, "Why is that so strange?"" "Why are we all walking around anonymous and not talking about the things that shape the way we are?" "One of the first things you think about when you're in the hospital with you kid is, uh..." "I'm surrounded by 500 families going through the same thing, but all the doors are closed." "It's tragic to me." "You're not alone." "I'm not alone." "I think we've been told a lie that it's safer to escape." "And, um, I see people saying" ""I use games as a form of escape."" "I mean, what are we escaping from?" "Are we gonna spend our whole life escaping from the thing that makes us, us, you know?" "The things that happen to us, define us." "They make us who we are." "They're complex, they're nuanced, they're tragic, and they're beautiful." "God." "Like, it just -- We're on the brink, you know?" "And it's just like we -- we need something to go well, otherwise I could lose Joel in like, the next month or two." "You know?" "And just so, seeing, like, the level of, um -- like the depth of emotion of the people that are playing it, like " "It just " " It reminds me just how heavy it is." "It's " " I just wish I could hold him right now." "You think a doctor would understand if you were like " " Yeah, why not?" " "His eye looks better." " I want a new scan."" " Why not?" "If you " " Like, you're at this stage in everything, like, what's it gonna hurt to have parents hoping for, like, miracles?" "You're so much less mopey here." " We're on our adventure." " I don't know." "It's funny 'cause I feel like I always think every MRI is gonna be, like, amazing and clear and you never think that." "And then now I feel like I'm less and less that way right now and you're more that way." "Yeah, I don't know, babe." "I don't know, either." "The trick is to keep squeezing it until there's nothing left in there." "Think that's it?" "Look!" "That!" "Yeah, that's a bridge." "That's the Golden Gate Bridge." "We found out that I was pregnant the day before they found two or three new tumors." "It's still a happy thing but it feels less important now because we're so focused on what's happening with Joel." "Are you gonna give Zoe a kiss?" " Yeah." " Give Zoe kisses." " Can you say "Hi, Zoe?"" " Hi, Zoe!" "Isaac, you better go wash up your hands " "Isaac, go wash off your hands, buddy!" "'Cause I feel like since this " "No, no, no, Elijah!" "No!" "No!" "No!" "My hand is sandy." "Go wash off your hands with Isaac!" "Good grief." "Getting them from the water to here" " without dirty hands..." " It's ridiculous." "...is ridiculous." "See?" "Right there." "Is that sand or...?" "That might be a little bit of sand." "You're ridiculous." "Okay, guys!" "Will you look at me?" "Okay." "Look at Da-da!" "Look at Daddy and smile, okay?" "Look at me, look at me, look at me!" "Hello!" "Hello!" "Hello!" " Where's Da-da?" " Hello!" "Hello!" "Hello!" "Joel!" "Elijah!" "Smile, buddy!" "Okay, I'm gonna get them more bread, Daddy." "Run!" "Run away!" "Run away!" "It just feels like if we knew we were a week from death," " we would know that." " Yeah." "Because he would be showing all the signs" " that they talk about." " Well, like " "Or even some of the signs that they talk about." " Right." " For end-of-life." "And we haven't seen any of those things." "With that, yeah." "By the time we get to that point," "I don't know that a trial will be helpful anyway." "So are we getting a week closer to that?" "Like " "I guess in theory, yes, but I'm comfortable with the way " "Like, I'm not panicked like we have to start tomorrow." "Uh, Mom?" "Joel won't take the cookies." "Oh, yeah?" "He wanted a cookie but now he doesn't want a cookie?" " Yeah." " I'll go help him." "He wants, he wants a -- He wants fried chicken, so..." "Oh, well, do you want to help him with that?" "No, don't make him help with " "You have to tear off pieces." " How long can I cook it?" " I wouldn't even cook it." "I'd just tear off " " No." "I " " Cook it." "Okay, Mommy will come help with chicken." "Mom, can I have a cookie?" "Yes, you can have a cookie." "It's interesting to me that there's a huge church with crosses on it, and then the hospital right there." "And I just -- I felt like most of the time we've been walking that line between both." "Ready?" "I think sometimes it's easier to retell pain, it's harder to encode joy." "I got to figure that out still." "Ha!" "Ooh." "Ha!" "Boom!" "I was telling Caleb that Joel's doing really well." "He's doing really well?" " Yeah." " Looks real happy!" "He's been very peaceful all afternoon." "I can tell you what it's like to be me, you know?" "And I can tell you what it's like to be with Joel but I can't tell you much about Joel." "'Cause I don't know him that well." "I know what it's like to love him and I know what it's like to be with him and I know what it's like to play with him and get that response, but I don't know what he's thinking." "I don't know what he thinks about all of this." "I wish I knew." "And I have hope that someday I will." "I feel like now we just kinda record everything." "There's just sort of this feeling that you should capture whatever you can." "Capturing the good and the bad and the sad and the happy and..." "His swallow is a little slow kinda deciding later what's important." "Because I think you wouldn't want to not capture it and know you couldn't go back." "Ready?" "Go!" "He's fine." "Aww." "Now you can draw." "Yeah!" "This is Mama's card." "Okay!" "Here's for Mommy." "It says -- "To Mommy."" ""Dear Mommy, I love you with all my heart and you love me with all your heart." "So we match!" "Love, Joel."" "Look -- he did so much coloring!" "He did lots of coloring and he wanted to do all the different colors." "Aw." "Good job, Joel." "Do you want one?" "Do you want to eat it?" "No?" "Okay." "No!" "No!" " Yo." " How's it going?" "It's going all right." " Yeah?" " Yeah." "So they've -- they've already started doing some toxicity tests and stuff?" "So they've given us a number of 10 % that it will work." " At all." " Yeah." "So..." "Where go?" " What?" " Where'd he go?" " Where'd he go?" " Where'd he go?" "Where'd Josh go?" "Uh..." "Where'd he go?" "Where'd he go?" "I don't know." "Where'd he go?" " Where'd he go?" " Hey, you!" "He said -- He said "Hey, you!"" "It sounded like "Hey, you!"" "People have asked, "Well, how does the game end?"" "We know where we want to leave people, but the way we have it, sort of scripted right now, might change, based on, you know, what happens in the next, uh, few weeks here." "If Ryan had to crawl in a hole for a month or however long, we would and could continue on the game." "You know, the game will be made." "Put it that way." "Some of the editing I've been doing is spectrograph-based." "This is what his laugh looks like, as far as like, a frequency, so it's a lot like a fingerprint, you know." "And like I actually started wondering like, if, uh, if I looked at enough of this, like, would I see something?" "Like, would I see, um, him somehow, you know?" "Yeah." "Pretty cool." "One scan can like, flip everything on its head in a moment, you know?" "Like, um..." "One night you're in San Francisco and one night you're back home, on an oxygen tank, you know?" "And uh, it just switches that quickly." "I think with Joel, I don't want to hide from it." "I think there is, uh -- temptation early on, you know?" "When he was 2 and they were telling us he was gonna die and it's like, well..." ""If I don't love him, then I won't be hurt by it," you know?" "And he's young and I don't know him and, you know, there's that detachment." "You can like allow yourself never to fully love, um, someone that you're gonna lose, you know?" "And instead, I just want to be like, all in." "In every way." "Sorry." "The kids are finally coming in." "It's okay." "We're gonna go say hi to the nurse, okay, Joel?" "Okay." "That's good there." "Now what we're gonna have to do is set him up on two different pain pumps." " Okay." " Hey, buddy." "Here, sweetheart." "Okay, baby." "There you go." "Hi!" "He's calmed down now." " That's the nurse." " Hi!" "My hands are very cold." "Hi there!" "So is he ever alert and walkin' around?" "No, he doesn't walk anymore." "Yeah, so he stopped " "I mean, for probably four or five weeks, stopped walking, standing, crawling." "So, they took the tube out today?" " Mm-hmm." " We did." " Yeah." " Okay." "But then that made us wonder about fluids for him because we're like "Eh, maybe he doesn't need all the food intake, but he probably still needs " " A little bit of fluids." " Some fluids." "We traditionally don't do I.V. fluids." "So, it's -- you probably " "We'll discuss it with the doctor." "Sure." " And, um " " How come?" " Just " " Kind of what your " "Um, it's not a goal of hospice to..." " Sure." " ...to, you know " "To keep him hydrated." "To keep him comfortable." " Understood." " Okay." "That could accelerate things, though." "It could." "Yeah." "So..." "We can titrate the medications if you guys want." "So what we're gonna start him on is 0.1 milligram." "Um, if there's error or something and it's beeping, you know you could press that." "And, you know, we're available 24/7." "So, you guys have our number." "I'm trying to rationalize to myself why I'm talking to you right now." "And like, why I'm even allowing you here, and why, um," "I do this stuff with the game and why " "I guess my only answer is I don't know what else I'd do." "And that I just " "I feel just this compulsion to just share it, to talk about it, because I-I kind of want to capture it because as soon as it's gone, it'll be a shadow and I won't be able to remember it." "I don't want " "I'm so scared I'm gonna forget Joel." "I don't want to forget him." "So maybe I'm pointing as many cameras as I can at him." "At us." "Just freeze this moment." "♪ I will love you ♪" "♪ Forever all my days ♪" "♪ I will love you right ♪" "♪ Hallelujah, our God reigns ♪" "♪ Hallelujah, our God reigns ♪" "♪ Forever all my days, hallelujah ♪" "I want to jump." "Watch me!" "When you jump, does it jump?" " No." " You can try." " You can try it." " Jump!" "Ah, you're right." "I want to try it!" "I want to try it!" "It's my turn!" "It's your turn?" "Do you want to go after Caleb?" " Yeah." " Okay." "That'd be fun." "I want to hold Zoe!" "Do you want to hold Zoe?" "Mom, I want to hold Zoe." "I can help you with the pacifier." "She was holding it back though, so." "If you just talk to her a little bit, she likes that the best." "Shh, Zoe." "This last act is a matter of asking the player to choose rest." "Also, asking the player to let Joel go." " I like it." " So..." "Now you're -- Now you're the player." "So, whereas before, you've been you, you've been me, you've caught where we're coming from." "Now in the cathedral, I'm asking you," ""So, how do you feel?"" "And so you're presented with this scenario where you have all these levers to pull." "And then, at some point they pull a lever and this thing comes up." "So "boom", you know?" "And now there's a keyboard." ""Okay, I've found something," right?" "Mm-hmm." "And now the keyboard starts to play." "And so, it's playing automatically, and you can either choose to play with it or play against it." "But like, whenever you play against it, you're creating dissonance." "And so, it's this matter of like playing along with what's happening." "It's resting in what's happening..." " Mm-hmm." " ...rather, you know?" "And then eventually, you get back to the forest and I changed this " " Aww." " I like that." " Yeah." "Is he telling you to "come on?"" "So he's more active." "Like, yeah, that could be it, or I was like either he's like saying" ""Come on, come on," or he's like popping a " " A bubble." " A bubble." "So the last you see us is on the island." "Mm-hmm." "And then Joel goes here without us " "And you see us on the island, in the middle of the sea." "Trusting that we're going to get to the other side." " And Joel goes and we stay." " Yeah." "On the island in the middle of the sea." "In the middle of the sea." "But he makes it to the other side." "He makes it to the other side." "Do you feel like you have to " "You don't feel like you have to revisit that at all once you get to the other side, that we're still on the island or that, like, it's just okay for you that that's where it is?" "I absolutely think, yeah." "Okay." "And that's why him like laying there is kind of like " "I don't necessarily know that I want us to be there in the park." "Yeah 'cause at first you said we'd be there, but I think you're right that -- If that's how you see this, is that at this point he's moved on and we can't " "Yeah." "Then, like, we're not there." "Yeah." "Okay, I feel really good about the end of the game." "And what we've written and what we're doing." " Yeah?" "Okay." " I think so." "I feel like it brings it around full circle." "I think it's gonna be really good." "I think it'll be pretty." "Most of the picking up the pieces is done in the aftermath." "Not in the middle of it." "When the cameras turn of and wh-- ...and then when the game is done, you know?" "And then, what, you're just left in silence with that hole." "I think that's the mystery of all of this, is that, life isn't built on how well things have gone." "It's the " "It's the whole crazy mess of it." "I was telling Caleb that Joel's doing really well." "He's doing really well?" " Yeah." " Looks real happy!" "He's been very peaceful all afternoon." "The most fulfilling and meaningful and passionate and compassionate moments of your life can be in the middle of the deepest loss you can experience." "I think that can be beautiful." "I hope it's beautiful." "More!" "♪♪"