. OXYGEN HISSES OXYGEN HISSES Langston? > Can you open your eyes for me, baby? No? Your dad's here, and your mom's on her way. You can talk to him if you like. You can talk to him if you like. Hi, Langston. We've come from London, England. We're making a TV programme. You're in the hospital, and so we've been filming your family a little bit, and filming with you a little bit too. So we're hoping you're gonna wake up, and we can tell you a little bit more about what we're doing. (SIGHS) (SIGHS) How're you feeling? Um, good. I feel really good. I know some people don't think it's a lot of progress, but something's better than nothing, you know? There's been miracles in many hospitals, and they can't say why. So this is gonna be a miracle right here. OTHERWORLDLY MUSIC I was in Cedars-Sinai Medical Center in Los Angeles, meeting patients looking for a last chance at life. If I do this, I'm buying... maybe months, right? maybe months, right? It could be more than that. maybe months, right? It could be more than that. All right, then. Let's do it. In America, doctors will go further to treat extreme cases than almost anywhere else in the world. He's young, he's a fighter ` we decided to keep going. I'd fight for life ` I certainly would. I mean, what, just sit there and just die? But the financial costs are enormous, the side effects sometimes severe, and the odds of success often very small. Patients and their families face the harrowing choice of accepting death or carrying on in the hope that one last procedure will pay off. Captions by Antony Vlug. Edited by Faith Hamblyn. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 SOMBRE MUSIC On the seventh floor of Saperstein Critical Care Tower, Langston Jackson, a 22-year-old college athlete, was non-responsive in the intensive-care unit. His family had been by his bedside since his arrival five days earlier; among them, his mother, Lyle. Can you` Can you tell me a little bit about what's going on? Can you` Can you tell me a little bit about what's going on? Well, Langston was in... rehab for the past 19 days, and on Saturday morning,... he had,... um... Uh, he and his roommate had gotten in contact, couldn't connect it with drugs, and, uh, he had an overdose, from what I understand from the facility, at about 3am. What do you understand about his condition at the moment? I understand he's in very critical condition. He has compromised liver and kidney function, and, uh, a traumatic brain injury. And they are waiting for him to... be able to breathe on his own to diagnose his brain injury further. How optimistic are you for Langston? I understand that this is gonna take quite a while, but that he's hopefully, able to walk, talk, do everything that he wants to do and continue to live his life, even with limited` uh, markeded limitations, that's fine. In charge of Langston's care was the ICU medical director Dr Heather Jones. She'd called a family meeting to discuss his prognosis. All right. OK, so, um,... (SIGHS) what Langston has is not, uh, a blood clot that blocked a certain part` a certain artery going to a certain part of the brain. He has, um, basically, certain areas of his brain were very very, uh, sensitive... to the fact that his oxygen level was very low, and so that's the part where it gets, um, < really heartbreaking is that, you know, when I asked Dr Moheet, who was the neurointensivist who took care of him when he was first sick, and Dr Palestrant as well felt that his chances of waking up... and being normal again are very small. And they just said that? Did they just say`? < Well, you know, I think that` that, um... I've been concerned about that from the beginning, and I think that we've all been concerned about that, but, you know, time will tell, and so in the first four, 24, 48, 72 hours, you kinda hope for the best, and you hope that what you're seeing on the scan is not real. < I think that we're all sad. I was hoping he would wake up, and I know that the first night we were` What do you mean he not gonna be able to wake up? He's still planning on waking up, though, right? No` Probably not. He's probably had such severe brain damage that he's not gonna wake up, that he's gonna be in kind of a comatose state, and that even if he does wake up, he would probably have pretty severe brain damage. How was that for you? Oh, it's so hard. It's a really hard one, cos I` You know, and also I'm talking at them, and I know they're not` they're not hearing me. If you'd allowed them to continue maybe in a state of slightly unrealistic... Mm-hm. Mm-hm. ...hope, what would have been the downside of that? Well, I think they're still in that slightly unrealistic hope. I don't think I could really penetrate that. It'll take time. I don't think I could really penetrate that. It'll take time. But you did your best to do that. Yeah, yeah, yeah, yeah. Yeah. Yeah, yeah, yeah, yeah. Yeah. And why` what` why` what's that? (COUGHS) Well, cos, uh,... it's time to start talking about that, you know? It's not 24 hours later. It's ` what is it ` it's four days later now, five days later, you know? So we need to start talking about those things, so... Cos they don't hear a lot, so we have to keep coming back to it. . PENSIVE MUSIC I was in Cedars-Sinai South Tower, home to another group of patients fighting for their lives against cancer. I had an appointment with Dr Yuliya Linhares. She was visiting a leukaemia patient ` 29-year-old Javier Galvan. She had news about his cell count. How are you? How are you? Hello. How are you feeling today? He looks good, right? How are you feeling today? He looks good, right? I'm good. You are? You are much better. I just wanted to tell you the counts. It looks like the absolute neutrophil count is showing up. OK. OK. So it's not certain whether they are bad, or whether they're good. You know, sometimes there are good ones that are just means that those are young cells that your bone marrow's spitting out, and if they are the bad cells, < uh, I will really have to, kind of,... pick my brain on what to do next. pick my brain on what to do next. I mean, we can't go back to anything he's already had? I think that's still` If he's in a good-enough shape, I think that's still a choice. So what` what` what are you up against right now as you understand it? As far as I understand, it's my blood. I'm fighting myself. My blood is killing me. It can't hold any nutrients. It can't do anything. It can't produce itself, and it's dying. How would you characterise it? What's the scenario we're in right now with Javier? So,... (SIGHS) yeah, basically, uh, right now, uh, we're battling acute myeloid leukaemia. Uh, and we've been trying to kill it with a series of different treatments. The treatments themselves are life-threatening. If Javier had died from that, what would have been the actual medical cause? It kills all the, like, dividing cells, so it kills the lining of the gut, the lining of the mouth, so you can get terrible mouth sores. Pretty much the whole inside of the mouth can pretty much fall off ` just like fall off. It's very painful. Are you OK hearing this? This is getting kinda gruesome. Are you OK hearing this? This is getting kinda gruesome. No, it's fine. It's all been. > It's all been. > < You've already been through this? It's all been. > < You've already been through this? No, he's already survived that. < I know, but even though. It's making me feel a little bit ill. You can hear them screaming. I've heard people screaming in the night. You can hear them screaming. I've heard people screaming in the night. < In the night. From what? Pain. Just... It's your whole body turning against you. You become like fire to move. Without, like, anything to calm it, it... it consumes you. It's really terrible. It's pretty much` And you can't do anything about it. How was the decision taken to continue with all these chemotherapies in the case of Javier? in the case of Javier? He's young. He's a fighter. Um, his body,... uh, organs overall are functioning well. We decided to keep going. What would be the reasons not to offer further treatments, further the chemo? He's had a lot of treatment already, and his body is weak. It's weakened by so many chemotherapy treatments. They're very toxic. So at one point, the risk of treatment is so high. The risk of treatment taking the patient's life is so high that, uh, physician just don't offer it any more. And last time I actually told him that he may live longer just choosing comfort type of care, rather than chemotherapy, because in the short run, chemotherapy could take his life fast, but they still chose to go on with the treatment. That was New Years... That was New Years... Wow. That was New Years... Wow. ...2010. So the year before he got sick. Before his health setbacks, Javier had been financing his dream of becoming an X-ray technician by working in a photocopy shop. It was there that he'd met Adriana in 2006. What was your plan before any of this happened? What was your plan before any of this happened? We were gonna get part-time jobs, because we'd quit our full-time jobs; uh, then we were gonna start school; and then we were gonna get married. Yeah, that was the plan ` pretty simple. As far as the care goes and the different stages on the journey, have you always been in sync, the two of you? Um, he's made it very clear what he wants, and,... you know, you kinda have to... It's his... It's his journey, and he's the one that's sick, and he's the one that, kind of, is in charge of his own care. And I ask him, I said, 'Well, if you don't think that you can... if you can do it, if you can keep going, 'like, will you tell me?' I'd never deny that for him if that's what he chooses, but, you know, he's always been, kind of, like, the, 'We can, kinda, do this. Like, I can fight this. Like, it's OK.' SOMBRE MUSIC Javier and Langston were facing life-threatening conditions in a country that leads the world in spending on end-of-life care. So proud of you. The US has turned its famous sense of 'can do' on to the problem of extreme illness. Most Americans either have health insurance or their care is paid for by the state. For them there is a smorgasbord of expensive treatment options, also the question of when to stop. Back with Dr Jones, and she had an appointment to discuss Langston's brain-scan results with her colleague Dr Yu, a neurologist. The best-case scenario is that he might wake up, but he'll never be able to walk, he'll never be able to feed himself. Will he know who he is? Will he be able to follow commands? Best-case scenario? So best-case scenario ` the patient will end up persistent vegetative state. That's the best-case scenario? That's the best-case scenario? He will open eyes, yawning, you know, vegetative state with minimal conscious level. OK, all right, and that's the best-case scenario? Yeah, that's, you know, most likely. This is a pretty severe injury. Yeah, that's, you know, most likely. This is a pretty severe injury. All right. OK. What are the choices going forward, then? It's, uh... I've been thinking a lot about this. Um, you know, if it was me and I told my family, in no uncertain terms, that I would not want to be kept alive. They won't be ready to do that with him. I don't think anybody really wants that, but I think sometimes families really have a hard time letting go, and, um, my experience is that, you know, it's gonna take some time. INDISTINCT CONVERSATIONS So, I wanted to talk to you guys about what's going on. I don't want to dash your hopes, but I need to tell you that... that from a scientific medical standpoint, he's not going to wake up, and that's he's had very severe brain damage, and that the best-case scenario is that he will be in a persistent vegetative state, meaning he will be in a nursing home on tube feeds. He will have a diaper. He won't be able to interact. He won't ever be able to talk again. He won't know who he is. I want you guys... to think about Langston, about whether he, if he could be part of this conversation, and let's say not now ` let's say a month from now ` if he hasn't woken up, would he want to be kept alive in that state? I understand what you're saying, and I hear what you're saying, and I respect, because doctors have to be ultra conservative, cos if you say he's gonna be all right and he's not, then we'll be leaving out of here feeling disappointed. So I understand how that goes. You know that you didn't know him before coming in here, but he is a fighter, and he is very stubborn, and he comes around at his own time. And last night I said, 'Hey, it's Uncle Stanley. I'm getting ready to leave.' And then I said, 'If you hear me, open your eyes.' < And he opened his eyes? < And he opened his eyes? And he opened his eyes, and I was not touching. I was away, and he opened his eyes, and he looked at me. That was my experience. It wasn't yours. You weren't there. Most doctors don't have time to sit and watch like the family can do. When the nurse comes he won't do it, and I'm, like, 'Langston, I'll hurt you.' Do you wanna go try right now? Do you wanna go try right now? Yes. Let's go take a look. Let's see what we can do right now. Hey, sweetie pie. Hey, sweetie pie. Langston, if you hear Ashley, look over to Ashley. Langston, squeeze my hand! Langston, squeeze my hand! He's way more alert when he's not drugged up. That's why` He's way more alert when he's not drugged up. That's why` Right, right, right. Let's see. So he has this doll's eye reflex, so I think he's probably, you know, not conscious right now. So see how they go back to the middle. That's a doll's eye reflex, so I think he's probably out. Yeah, that's not what he's looking like now. > Yeah, that's not what he's looking like now. > Yeah, yeah, that's not how he was. OK, OK, guys, any other questions right now? Well, thank you for coming in. I really appreciate it. It seemed as though the doctor had one message and you, kind of, respectfully disagreed. For sure. For sure. And you made that quite clear. Mm-hm. Mm-hm. So what` what` what point were you putting across? That, um, I don't think we're going to necessarily have to worry about my brother being a vegetable, and even if he's, you know, has a slight disability or some sort, um, that he will be able to cope, and it will be a little bit better than the prognosis that they are assuming. He's the` You don't resent them... > You don't resent them... > For what happened? You don't resent them... > For what happened? ...for trying to, uh, > let you know what their clinical impression is of the situation? let you know what their clinical impression is of the situation? Definitely not. We get that that's a reality. We're not delusional. We're not in a fantasy world. You know, and, though, it might seem that way, but we have to be super positive when such great odds are against him towards everybody else. When the doctor had said something about, 'What would Langston want if he were in the room right now',... Mm. Mm. ...did you give any thought to that? I did. Um, I mean, my brother, although he suffered from depression at times or what not, he was always full of life and full of hope and full of optimism in regards to things could get better, which is why he checked himself and stayed in the rehab. Clearly, he didn't perceive what happened happening, but he was still, like, trying, so I know that he wouldn't want us to give up on him, cos he never gave up on himself. It's not OK to control your partner with threats. It's not OK to control who they spend time with,... ...how they use their phone or Facebook or how they dress. It's not OK to make them live in fear. It's not OK to say it's none of our business. Because it is our business. And it's not OK. Ever. But it is OK to ask for help. . TENSE MUSIC For patients who have stabilised in ICU but are still not responsive, there are other facilities that offer what is called 'long-term subacute care'. One is Fountain View. Here many of the residents are in states of minimal consciousness that can last years. Hi. Are you Rosalie? Yes, hi. Yes, hi. Hi. Louis. Nice to meet you. And this is Francisco? Yes. Yes. Hi, Francisco. Francisco Ferhada was a physician originally from the Philippines. He's been a full-time resident of Fountain View since a stroke in 2010. His sister Rosalie is a daily visitor. The interesting thing is Francisco's face is showing all kinds of expressions. Mm-hm. Mm-hm. Do you think he's registering that there's an unusual voice here? Maybe he hears. He's looking quite stimulated. Mm-hm. Mm-hm. Is that OK? Yes. Yes. Are you OK, Francisco? (SPEAKS FILIPINO) We're from the BBC. We're making a documentary about people with serious conditions,... and we'd, uh... we just wanted to get you to know you a little bit. and we'd, uh... we just wanted to get you to know you a little bit. MACHINES BEEPING And how long has he been in this state? And how long has he been in this state? Um, three years in December. We've always hoped that, you know, one day he would, well, wake up. But he's made progress, at least for us. I mean, maybe the doctors might not say that that's progress, or` But for us, family, you know, just little things that we see different every day from the time he got sick, that's improvement for us, no matter what it is. Have the doctors said what they feel is a realistic prognosis? From the start, they said that he was not gonna recover, but, you know, like I said, you know, we believe differently. You know, we understand, you know. I work in healthcare, I understand, but, you know, as a family, um, you know, that's... We believe differently. In the nearly three years that Francisco's been in this state, have you had any words from him? No. No. Not words. Mostly facial expression. Dr Michael Soffer is the director for Francisco's unit. Once a week he makes rounds on the patients under his care. What is the prognosis like for Francisco at this point? No recovery. Um, a few years until some event happens that results in his passing, whether it's an overwhelming pneumonia or another stroke, or a heart attack or any number of possibilities. Could you give an idea of what you think his quality of life is like? Well, when I ask patients who are able to understand and respond appropriately, if they were in a vegetative state, such as this, would they want to be kept alive like this, uh, pretty much universally, they tell me no. Um, so I don't believe that there is much quality in his, uh, unfortunate existence. Has something gone wrong with the system here in some way that, uh, that these types of cases are... are... are being cared for for years and years, or`? Years ago, 20, 30 years ago, we didn't do this. We didn't have these facilities available, and if people got to this point where they could not function, uh, you know, at this level, um, then they died. You know, there are always trade-offs and when society` when we as a society choose to spend our money on keeping the 'end stage of life' patients alive longer, we choose not to spend money on services for other people that perhaps could benefit more. H-H-Have you ever thought about if something like this were ever to befall you, what you would do? What you would want done to you? What you would want done to you? I have already made that decision, cos, you know, when this happened, um, you know, we` we` I would do the same thing. Do you feel you still have... a good relationship with him? Mm-hm, yes. Even though he's just lying there, and to some extent he's unresponsive, > you feel that there's still a...? > you feel that there's still a...? > Yes. I don't` I can't explain it, but I just know that he knows... that we're here. You know, we're looking after him. (SPEAKS FILIPINO) MELANCHOLIC MUSIC SIREN WAILS At Cedars-Sinai South Tower on the cancer ward, I was with Dr Richard Gould, with an appointment to meet his patient Dante Rogers. Hi, Dante. Hi, Dante. How are you? Good. How are you doing? Good. How are you doing? Good. Good. Nice to meet you. Nice to meet you. Nice to meet you too. You know we're from the BBC, right? From London, England. You know we're from the BBC, right? From London, England. Yes. Yay. Viva London. (LAUGHS) (CHUCKLES) Dante had come to LA with dreams of making it as an entertainer, but aged 31 he'd been diagnosed with cancer. With no health insurance, he qualified for public assistance for his medical care. So how long have you two been... had this relationship, uh, doctor-patient relationship? Probably over nine months now. Yeah, almost five months. Going on five months I've been here. Yeah, Dante was initially diagnosed with, uh, a locally advanced anal cancer that we treated with chemotherapy and radiation with the hopes of curing, but, uh, unfortunately, the treatment was difficult for Dante to get through, and once we got through it, there was still active cancer there. So there was chemo and radiation, but, basically, it did not eradicate the cancer. Exactly. Exactly. So then? > Really, the best chance that we had at that point to try to get rid of the cancer was to do a large surgery to remove the anal-rectal cancer, uh, and to remove the spots from the liver. They saved my life,... saved my life. They got rid of the cancer so far. You've basically been residing in the hospital for about 150 days, is that right? Close to. Well, it's more like 120-something days, so about 125 days now. So that is a lot of, uh, medical attention and a lot of expense. I could buy two houses. I dunno, maybe have something... move to London and have a chateau. So if it's not an indelicate question, do you have a figure of how much it would have cost? Well, my last bill, I looked, we were probably at about $2 million. Somewhere close to that. Is it helpful to talk about, um,... uh, you know, a time frame, or how likely it is... uh, how long he'll live ` you know, things like that? I give people a general sense of how much longer I think they're going to live based upon days, weeks, months, or years, but I have no idea how long anybody has, you know, cancer or no cancer, so it's a difficult question. It's one of the hardest questions to answer. Have you had a conversation like that with Dante? I have. I have. Um, you know, Dante, um, is a silver-lining guy. You know, he focuses on the hope. He focuses on the good things and trying to keep a positive attitude, uh, so` so for him thinking about while, you know, the cancer has such a high likelihood of coming back, um, that is hard for him, and so he focuses on that small percentage that maybe the cancer won't come back, maybe we'll be able to give him further treatments and to get him through, uh, this. CAR HORN BEEPS BROODING MUSIC Back with Javier, and Dr Linhares had the results from his biopsy and his cell count. Hi, Javier. How are you feeling? Hi, Javier. How are you feeling? Cancery. Hi, Javier. How are you feeling? Cancery. (GIGGLES) > Just, uh, hanging in there. Just trying to get through the day. Just trying to get through the day. All right, so, are you ready to talk? Sure. Sure. All right, so we did the bone-marrow biopsy yesterday, and, uh, unfortunately, it's full of leukaemia. So it's not in remission. Actually, it looks like it just grew. All the good cells again are down. All the good cells again are down. So we went from 24% to...? 95%. 95%. OK. > 95%. OK. > 95% less, and there are no good cells. > and there are no good cells. > Yeah. > The options remain the same, um, which is, um, one is, of course, if you feel like enough chemotherapy is enough, is to just not do anything. Um, the other one is a real, um, you know, brain twister, because I knew that that wouldn't be what you would want. I, kind of, guessed that, so, um, we were trying to think of, um, the treatments that could still benefit you, and the only one I could think of with the` being the most sure bet is the very first we gave you, < because that one was the one that killed the leukaemia. You did have the complications, but they were due to influenza, so, um,... I think that if we could stay on track, then you could have maintained the remission. I mean, we've come this far. I mean... really. You ready? You ready? I'm ready. It's up to you. Yeah. Yeah. Why do you have to be so efficient? What would be a reason not to do it? What would be a reason not to do it? Well, just because, honestly, the chances of, uh, chemotherapy working after somebody already had four different chemotherapy treatments, which didn't work are less than 50%. So for many people, this would just be enough. Is that a factor for you, Javier? I mean, really, they're offering me nothing or something, so I might as well just take something. I don't see a point in not... pursuing a chance,... so... I gotta go for it, I mean, really. I gotta go for it, I mean, really. If Javier decided not to do it, he wouldn't be able to go home? < He would. He would just go home with` And die. And die. ...basically, yeah, just... And die. ...basically, yeah, just... ...a death sentence. It would be, like, a week or two weeks, if that. And what are you thinking, Javier? And what are you thinking, Javier? I'm thinking I let everybody down. How could you feel you've let anyone down? After I beat the first remission, it was kind of, like, 'Yay', you know? I beat the first remission, so it was kind of uplifting, and then I got a different kind of... AML, and now it's like all these promises that I've made are, like, completely haberdash. It's just garbage. It's a garbage outcome for, kind of, an epic struggle. It's just... It's a big let-down. It really is. I mean, Adriana, like,... I'm so sorry. What can you do? I'm so sorry, baby. I'm so sorry, baby. It's like nothing... < But why would you feel` Adriana, you don't feel Javier's letting you down, do you? No, it's just, you know, I guess, another bump in the road. You feel let down by the disease, but not by Javier. You feel let down by the disease, but not by Javier. It's just so aggressive, you know? How much time could I buy? It may not be that much of a difference. That's why I'm even offering this, because I think that where things are already is... < ...already pretty dire. < ...already pretty dire. It's already not good, yeah. Therefore it's hard to make it too... It's hard to make it worse, basically. All right. If I do this, I'm buying... maybe months, right? Well, it depends. Well, it depends. If you're in remission, you could do transplant. > If it works, it could be more than that. < All right, then, let's do it. < All right, then, let's do it. Adriana, do you have a view on what you would like the decision to be? We kinda have to go for it, you know. It's gonna be either... It's gonna be chemo, or... < It could be weeks or it could be months. I mean, we kinda have to... I think we'll always kind of wonder, I guess, at least I will, you know, if he tried it, would it have worked? And, you know, I kind of like him a little bit. I want him around... (LAUGHS) as much as possible. So we gotta try. OK. All right. Aw, I know. Aw, I know. Don't worry. He'll be OK. See you later. Now, Javier's chances of surviving this are... very close to zero. Realistically,... it's... zero. zero. I mean, I was in the room when we were talking about this, and I didn't get the impression that his odds were quite so slim. Do you think they understand that? Yes, I'm sure they understand, because I, uh, told him that his, um, first choice, as I verbalised it, was to go home and just pursue comfort measures, and, um, usually when we say that, that means that the odds are very very slim. So the textbook analysis of this situation would be you should let him... go home and be with his family and not go through any more interventions, but you know that, and, you know, I respect your instincts for what you feel he needs. There can be so many ethics discussions about this, and there can be so many people who would say, 'What are you guys doing? You're crazy. Send him home. 'This is not going to work. Why is he gonna die in the hospital?' But on the other hand, like I said, I hate pushing people in some direction, because with him, I would be pushing him. This is not what he wants. He wants to keep fighting, and I just... I can't. I can't be breaking him. It's really tough, and it seems like it doesn't make sense, but... I dunno. If I were in his shoes, I might prefer the same. . OTHERWORLDLY MUSIC He's gonna feel a lot better after this. You've got great teeth. Yeah, you do have beautiful teeth. Yeah, you do have beautiful teeth. Did you have to go through orthodontia, or were you born lucky? Probably born lucky. Langston had now been in the hospital more than a month. His family were convinced that he was getting better, and now even some of the nurses were starting to see progress. Have you noticed him make eye contact with you yet? Have you noticed him make eye contact with you yet? No, I've seen him look at me. Really? Really? But I don't see him track me, but I've seen him look at me, and when I` he hears a sound, he reacts. Oh, OK. Oh, OK. That I do notice. That's a start in the right direction. That's a start in the right direction. Yeah. Langston? Can you hear me? Langston, can you hear me? > CONTEMPLATIVE MUSIC I'd arranged a visit with his sister Ashley to try to get to know him and learn a little about his football career and his brush with drugs. Hi. How are you doing? Hi. How are you doing? Hi. Good. Hi. How are you doing? Hi. Good. Nice to see you. We started with some old photos of Langston with his twin brother, Lorne. Oh, that's a nice one. That's you in the middle. Oh, that's a nice one. That's you in the middle. Yeah. 'BUILD ME UP BUTTERCUP' 'BUILD ME UP BUTTERCUP' If you have someone that makes you feel like a buttercup, that's good. If you don't have anyone that makes you feel like a buttercup, or doesn't love you, I'm just gonna say it ` I love you, and you are my buttercup. Don't ever forget that. Do you have any sense of what would have induced him to start taking serious drugs? No, I think, you know, in Simi Valley it's been an epidemic. He's lost 11 friends in the past... since 2011, and I think it's just` since 2011, and I think it's just` < To drugs? To heroin? since 2011, and I think it's just` < To drugs? To heroin? To heroin in Simi Valley. So I think it's just a drug that came, that followed. Some places it might be coke, or it might be meth. In Simi Valley it's just heroin. Sometimes, I mean, there's so many different reasons that people do drugs ` was there anything in his life that was`? Did he seem troubled in any way? Yeah. > Yeah. > About what? He, like, always had high expectations for himself. There was always competition between him and our other brother. There was always competition between him and our other brother. < His twin, Lorne? Mm-hm, yeah. And Lorne always seemed to get it right, and, you know` And Lorne was, uh, doing better academically ` is that right? And Lorne was, uh, doing better academically ` is that right? Correct. Mm-hm. > And in any other way? No. > No. > Or was he just` Was Lorne a bit more of a,... I mean, would get into trouble less? I mean, would get into trouble less? He would never get in trouble. > I mean, would get into trouble less? He would never get in trouble. > Why not? He was scared. He is scared of authority, scared of consequences, scared of things like that; we weren't. we weren't. < Langston has never been like that. we weren't. < Langston has never been like that. No. Mm-mm. Do you think he's been depressed? Do you think he's been depressed? Yeah. We went to a USC-Cal game in San Diego, and he couldn't take the game. Like, he was crying hysterically, and I left with him to go outside because he felt bad that there were decisions he made, and he had regrets and was, like, he should be on the field, he could do better than any of those guys there, and it was just hard for him. Let's just say he just stays exactly where he is now. Would that be... I mean, you'd still be OK with that? I would, but I know he's not gonna stay where he's at now. I know he's gonna get better. I mean, and if you were in his position, you would want exactly the same? Mm-hm. I'm only gonna die when my heart stops beating and when I can't breathe on my own, says God, not says a human being. As long as there's life in my body, allow me to fight. SURREAL MUSIC At the hospital, the 24-hour vigil at Langston's bedside had been joined by a new family member. How do you do? I'm Louis. Nice to meet you. What's your name? Ms Jackson. Ms Jackson. < Ms Jackson. Langston. Langston. < Langston. It's your grandmother. Come on, turn your head over and give me a smile. Don't give me no crying now. I did came too far for tears. I've been crying for so long. I wanna laugh. Come on over here. Hey. Come on over here. What do you close your eyes for when I do that for, huh? You think I'm gonna slap you? (LAUGHS) I ain't gonna hurt the baby. I ain't gonna hurt the baby. < How would you describe Langston before he got ill? How'd I describe him? He has always been polite. He hasn't ever talked back. And he's always been a mannerable child. Like I say, God forgive you. God forgive you. And he told the Devil, 'You can hurt him, but you sure ain't gonna kill him.' And I believe him. I'm a child of God and all of my seeds. All of you my seed. You're hurting now, but God's gonna make you laugh at the Devil, cos he won't never succeed. He's not gonna kill you. You're in the fog, but it's gonna be clear. One day you're gonna see. The image of Langston's family praying for him was undeniably moving. It was hard not to get swept up in the emotion and the temptation to believe that an appeal to the supernatural might help. More than ever, I was reminded of the resolve of families to keep going at any cost. It was three weeks since my first conversation with Dante. Recovery from surgery was proving slower than expected. Dr Gould had arranged a meeting with his surgical team. Yeah, no, I've got the whole team here, so` so that we could talk with you and answer any questions that you have. Just thought we'd have everybody. How are you doing? How are you feeling? I'm OK. Just trying to position myself. So, we all met to talk about, uh, you know, where things are at with you and with your` your` your cancer and with the surgery and with your healing and needing more pain medicine, and, uh, we've been doing everything that we can to try to help the wound to heal, but we've just hit a roadblock where it's not healing any further and that the area around the wound is starting to break down, and so we've been talking about what our options are to try to, uh, help with that. We wanted to get both of your surgeons in the same place to talk with you about that, so... I want TJ, since he does the most, to, uh, talk about it. Yeah, I mean, when we look at the progression at the time of the APR, the abdominal-perineal resection you had, you know, we took viable tissue and we brought it into the perineum area, and then when we look at the way it healed, < well, unfortunately, the surrounding tissue is not integrating the flap, so we were brainstorming about is, like, whether the likelihood if we bring another tissue that the same type of situation will again arise, and then place you in a worse situation then what you are at this time. So what does that mean? I have to... Am I just stuck with the... trying to make this heal or what? Yeah, we're unfortunately at a place where it's not healing, and it doesn't look like it's going to heal. And so it's about what we can do to keep you comfortable and to take away the pain, but we're not gonna be able to make it better, unfortunately. but we're not gonna be able to make it better, unfortunately. OK. OK? So it's about looking at comfort measures and, basically, hospice. The best that we can do for you is to focus on not doing anything which is gonna make you feel worse and only give you treatments which will help you to feel better. It just seems so simple, yet so complicated. I don't understand it. I don't understand it. The tissues just aren't healing, Dante. You know, it's the toughest decision for... for a surgeon not to be able... not to offer surgery and for an oncologist not to offer any treatment options, so coming to this decision... And I can't imagine how hard it is on you, but it's pretty hard on us too. Thank you for the news, and maybe a miracle will come out of it. I don't know. We'll still be checking on you and taking care of you. That hasn't changed. It's just the direction of our treatment has changed, so that we can make sure that we're keeping you as comfortable and as pain free as possible. OK. OK. OK. Thank you. Thank you. You're welcome. WHISPERS: God is with you. Leave it to God. Leave it to God. (SOBS) I know. Boy, they talked it out, though. They looked at everything. They talked it out. (SNIFFLES) All those minds together. Cos everybody so, so cares about you and loves you. You have to give into God, sweetheart. You have to give into God, sweetheart. So what am I suppose to do? Am I just suppose to sit in a bed forever? . You must be Aunt Bonnie. You must be Aunt Bonnie. Yes, I am. You must be Aunt Bonnie. Yes, I am. I'm Louis. Nice to meet you, Louis. Nice to meet you, Louis. Nice to meet you. How're you doing? Nice to meet you, Louis. Nice to meet you. How're you doing? Fine, just fine. I'm just trying to absorb everything that's going on with Dante. I... I'm just shocked that a wound is gonna take his life. I` I` I just can't believe that. I won't believe that. < Dante, and you, what are you thinking? It's even more devastating for me, because, uh, my mind has been set that I was gonna get out of here, and, um,... you know, to see the doctors that you've looked up to through all this time, and then look at you empty in the face and, see, I didn't want to get started again. We're just hoping for a miracle. He's just a special young man to us, and, um, we just don't... We just can't believe this. We just can't believe this is the end. What do you think Dante's thinking? What do you think Dante's thinking? I think he's devastated, and I think he's in shock. He's talking about fighting, and he's done so much fighting, and based on what the doctors are saying, it seems like maybe now isn't the time to fight. You know, maybe now is the time to try and be comfortable. I'd fight for life. I certainly would. I mean, what, sit there and just die? No, I wouldn't do it, and I wouldn't encourage him to do it. But to lay there and just, you know, do nothing ` I don't think that's the answer. It sounds like that's what the doctors are saying. > They can only do what they feel they've been trained to do, you know, but doctors are humans, and they make errors just like everybody else. Honestly, would you do that? Would you sit up` You look like a fairly young man yourself. If someone told you` Would you lay up there and just die? I` It's so hard to know, to even imagine, what would be going through your head in that situation. Well, you know, I'm older, I'm in my late 50s, and I wouldn't do it. I` I` I'm not ready to give up. Are you in a position to, sort of, put your foot down and say, 'We want to try more things'? Yeah, but according to what they told me, they've gone over and beyond what they would've done. So... MELANCHOLY MUSIC Two days after the bad news about his cell count, Javier and Adriana held a small gathering of friends and family at the hospital. So today Javier and Adriana proclaim their love to the world and everyone here. We rejoice with and for them. Javier Alonso Galvan, > do you choose Adriana Guadalupe Rodriguez > to be your lawfully wedded wife and your beloved one? And if so, please say 'I do'. And if so, please say 'I do'. I do. Adriana, I give you my hand and my heart... Adriana, I give you my hand and my heart... Adriana, I give you my hand and my heart... ...as I join my life to yours. ...as I join my life to yours. ...as I join my life to yours. With this ring,... With this ring,... With this ring,... ...I thee wed. With this ring,... ...I thee wed. ...I thee wed. Javier, I give you my hand and my heart... Javier, I give you my hand and my heart... Javier, I give you my hand and my heart... ...as I join my life to yours. ...as I join my life to yours. ...as I join my life to yours. < With this ring... With this ring,... With this ring,... With this ring,... ...I thee wed. ...I thee wed. ...I thee wed. ...I thee wed. ...I thee wed. And with all that I am,... And with all that I am,... And with all that I am,... ...I cherish you... ...I cherish you... ...I cherish you... ...and love you. ...I cherish you... ...and love you. ...and I love you. It is really a great honour and privilege to pronounce you husband and wife. Yay. Thank you. Yay. Thank you. Thank you. Yay. Thank you. Thank you. FRIENDS CHEER AND APPLAUD Mr and Mrs Javier and Adriana Galvan. > FRIENDS CHEER AND APPLAUD Two days after the ceremony, Javier started a new round of chemo. He died the following day. His end was probably hastened by his treatment, but he had also died fighting. DRAMATIC MUSIC Though I'd been just a small part of Javier's last days on Earth, I couldn't help grieving his loss. I realised that for young people who have hopes and dreams, to ask them not to take everything on offer to keep going is almost impossible. DRAMATIC MUSIC CONTINUES Two months after I first arrived at the hospital, I had an extraordinary call. In a turn of events the doctors were having trouble explaining, Langston's family had got their miracle. Hi, Langston. I'm Heather. Hi, Langston. I'm Heather. Do you remember her? Hi, Langston. I'm Heather. Do you remember her? Do you remember me? Langston, who's this? Who's that. My sister. My sister. Oh my God. (LAUGHS) I'm not being droll about it. I'm not being droll about it. Oh my God. (LAUGHS) Oh. Can you tell me who's that? Who's that, Langston? My sister. My sister. Oh, you're seeing her. (SNIFFLES) Oh, I'm so happy you're OK. (SNIFFLES) I really am so happy. Yay. OK, I won't cry. BOTH LAUGH BOTH LAUGH Oh wow. WHISPERS: Who is that? WHISPERS: Who is that? Who is that? His name is Louis. WHISPERS: Who is that? Who is that? His name is Louis. We're from the BBC, from Britain. We've been filming you while you've been ill. < This is amazing. Watch. I love you, Langston. I love you, Langston. I love you, Langston. I love you too. I love you, Langston. I love you too. See? I love you too. You don't seem that surprised. I already told you what was gonna happen. I'm grateful, and I'm thankful to God, and I'm just` I knew he was gonna be OK, and I know he's gonna get better. You believe this was a miracle? You believe this was a miracle? Yes. (LAUGHS) He said it is too. So that was, um, unexpected. Yeah. Yeah. Would you say? Yeah. Would you say? Yeah. That was really unexpected. Um, so I just called one of the neurologists too that, uh, I was working with in the ICU, and he said, 'You know, I didn't` It's like a one in a million.' To recap ` what had originally been said, and this was some while ago, a couple of weeks ago now, was that the best-case scenario was a vegetative state... Yes. Yes. ...with minimal higher brain function. So in the sense that he would basically not follow instructions, not really be a person. Right. Exactly. And that was the best-case scenario. And that was the best-case scenario. That was the best-case scenario. And that was the best-case scenario. That was the best-case scenario. Based on the scans. Based on the scans and what I was told by the neurologist and my experience with this, so usually, if people don't wake up right away, like, in a week or so, then they don't wake up, so... Looking back on it, does that mean, um, you and your colleagues made a mistake in a sense, or were you right to manage expectations... and base your assessment on the likeliest outcome? I guess, you know,... I think that most people, uh... I think it's appropriate to say... this is best-case scenario based on all the evidence that we have and based on most patients in this situation, so, um, I think it would... it would be inappropriate to give anybody hope when the experts, the neurointensivists and the neurologists are saying there's no chance for a meaningful recovery. As we say, they didn't read textbook. He didn't read the textbook. He's suppose to be brain` a vegetable, but he's not. He's waking up, so that's a miracle, I guess. Is it possible he'll make a full recovery? I don't know. I really don't know. You know, I, uh... God, wouldn't that be great? It would make it really hard to have these conversations with other families, but, um... but I think that would be amazing. Yeah, yeah, that would be so exciting. HOPEFUL MUSIC HOPEFUL MUSIC CONTINUES 1 I was on my way to see Dante. After five months and 10 days in the hospital, he'd taken the step of accepting that the Cedars-Sinai doctors could do nothing further for him. How're you feeling? How're you feeling? I feel good. > I decided to put on my` This is the jacket and hat I said I was gonna wear when I leave out of here. It's what I came here in. So whatever experience can... You know, I can embody... and, you know, be engulfed in it, and on to the new legacy. How is your outlook? How is your outlook? As far as? < General outlook. Are you feeling positive? Um, I've always been optimistic. Um, I'm definitely` I think this is a better move for me, cos now I can look for other measures of medications. I have, you know, too much life to live. I think I can really either beat this or extend the time at least. Hi, Dr Gould. Hi, Dr Gould. Hi, Dante. How are you? Good. Good. Yeah? Good. Yeah? Mm-hm. Are you comfortable? Are you comfortable? Yes. Are you comfortable? Yes. Good. Any pain? No. None so far. No. None so far. No? OK. No. None so far. No? OK. No pain. Once you get home, the hospice team is gonna be there to help take care of you. And like we talked about before, I won't be seeing you at home, but I'll be talking with the hospice team and helping to take care of you with them. It's been a pleasure working with you for 100 and how many days? Lord have mercy. Putting it all together, it's probably been around nine months. Maybe a little longer than that. All right, doctor, see you soon. All right, doctor, see you soon. OK. Bye, Dante. All right, doctor, see you soon. OK. Bye, Dante. Bye. Dante's been on a journey of acceptance to do with him not really wanting to face what's going on, to some extent ` do you know where he is on that journey now? He` He's still on that journey towards acceptance. He's not quite there yet. Um, today he was able to talk with me about hospice a little bit. Um, it's been difficult for him to look at going home, that he's going home on hospice. He's been looking at it a lot as he's going home, he's leaving the hospital, but not really what that means, that it's about taking care of him as he's going through the dying process and accepting that he is dying. And, uh, even now he's still, you know, praying and hoping for a miracle. Has there ever been a time when you felt if he had not been so, um, keen on, you know, beating the cancer, that he would have not put himself through so much suffering? I... His strong willpower of wanting to live and needing to live and being willing to go through painful procedures and interventions that he knew would make him feel worse in the short term, that he knew would bring on more pain in the short term for the chance of doing better, for the chance of being better afterwards ` um, because of that, yes, he did go through more pain and more suffering, um, but, you know, there's not a right or wrong way to do that, and it's a very individual decision on` on` on whether somebody is willing to go through that, and for Dante, it was worth it. No? All right, Mr Rogers, before you go, if I could just get a quick signature? It's just for consent for us to take you back to your aunt's, right? Yes. Yes. All right. Here you go. I'll just get your signature here. Uh-huh. (GROANS) PIANO MUSIC MUSIC CONTINUES Six weeks after he was discharged, Dante died at his Aunt Bonnie's house surrounded by friends and family. Oh my God. Hi, Langston. Hi. Hi. STAFF APPLAUDS AND CHEERS Seven weeks after he woke up, after intensive rehabilitation at another facility, Langston paid a visit to the ICU. Oh my gosh. Oh my gosh. I'm Louis. Nice to meet you properly. Wow. Wow. I'm good. Wow. I'm good. You're good? These people ` everybody is just so excited that you're here. You're just` You're a miracle. You know that, right? Yeah. Yeah. What's the first thing you remember? Uh, nothing really. Just waking up now. Uh, nothing really. Just waking up now. You don't remember me? Where do you remember waking up? At the other hospital. At the other hospital. < At the other hospital. You don't remember? Cos when you woke up here, it was right before you were about to go, and that was amazing just to see that, yeah, yeah. Congratulations. > Congratulations. > Thank you. God, wow. Do you wanna see the room where you were? Yeah. Yeah. Yeah. Come on down. (LAUGHS) There's nobody in there, right? These are all the people that took care of you. (CHUCKLES) (CHUCKLES) INSPIRING MUSIC MUSIC CONTINUES 1 Captions by Antony Vlug. Edited by Faith Hamblyn. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014