* (RISING, UPBEAT PIANO MUSIC) Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017 (UPBEAT PIANO MUSIC CONTINUES) (MUSIC SLOWS, QUIETENS) (KNOCK ON DOOR) WOMAN: Sean. Rise and shine. How you feeling? Uh, a little bit sore, but OK. Don't be too long. Breakfast is ready. I was diagnosed on my 10th birthday with osteosarcoma, which is bone cancer. They didn't expect me to live past a year or two years. Sean's life was saved by a radical surgery called rotationplasty. A large section of cancerous upper-leg was removed, and the healthy bottom half of the same leg was reattached ` backwards. (GENTLE, THOUGHTFUL MUSIC) Many people in the world who've had this type of surgery, they don't really know what's to be expected. About two weeks ago, I guess the pain got so intense that I couldn't walk at all. Um, I couldn't even move my leg. I guess I'm always going to have to have certain types of treatment to keep my bones from basically crumbling. Always will be on drugs, pretty much for the rest of my life ` just to keep my health up and make sure that the cancer doesn't come back. So I've got a cup of tea almost ready here for you. OK. 'I am incredibly proud of him.' That's your gabapentin ` for pain. Here. 'Just for his... his attitude. He never complains ` ever. 'I mean, even with his amputation, obviously, I had to say to him one time`' I had to be honest. I said, 'Sean, sometimes I miss your leg.' And the most I got is he said, 'Yeah, I miss it, Mum, too, 'but, you know, it is what it is, and, you know, this is great. This is a second chance.' I know you don't feel like eating, but I really need you to eat this morning. OK? Please try and eat something. Yeah, I will. OK? All right. 'I've been in remission for about six years.' So, without cancer, still trying to strive for a better life. I guess recently it's been a lot harder than usual. He's lost the hearing in his upper ranges. He's got some problems with his eyes. And he's got some heart damage. Life before cancer was, I guess, more of a faded memory. Yeah, I guess it was in some way happier memories. (DREAMY MUSIC) Here. Here. Chaka. Fetch. Go on. Go. My name is Sean, and I'm 14 years old. (TOY SQUEAKS) I have a lovely dog, Chaka, and he's my best friend in the world. What he used to like to do is things like hiking, tramping. Even this year, he wanted to do outdoor education, and I think that what's really annoyed him is that, you know, he couldn't go rock climbing and he couldn't go, um, doing all these things. He was diagnosed on the day of his 10th birthday, which, um, really didn't seem very fair. They sent us for an X-ray at lunchtime, and we were rung at 3 o'clock in the afternoon, saying that we had, uh, an appointment in Wellington Hospital. I don't think we actually left a hospital for about six months. (POIGNANT MUSIC) Osteosarcoma's, uh, one of the most aggressive cancers you can get. So they hit these children really hard. They give them four and a half months of high-dose chemotherapy, and then they remove the cancer, and then they do another four and a half. Along the journey we also found out that he had something called Fanconi's anaemia. It highly exacerbates the toxicity of chemo. Sean got every complication you can get. He got mucositis, which is all of your soft-tissue cavities blister. But he has defied all of the odds. He is just amazing, that boy. Um, every time things have been down, he's just got through it. Izzy, help Sean, please. (CHILD SPEAKS IN DISTANCE) Next week we will fly up to Starship Hospital, and Sean, on the following day, will go through his rotationplasty. I can deal with it. I'm fine. In 2012, I got nine allografts put into the top of my leg. An allograft is human bone. They'd put it in a bit of your leg, and they would grow from there. But they couldn't do that cos they had to put titanium instead, because my bones were crumbling and falling apart anyway. (INDISTINCT CONVERSATIONS) It's quite sore these days and stops me from getting to school and doing work and those things. ...school? Yeah. Ah. I see. There you go. Yeah. Just walking, in general, it... twists quite a lot, and... it'll click out of place every now and then. (FOOTSTEPS RUMBLE) Rotationplasty is an operation which is a very rare procedure, but it's reserved for a group of patients who have a problem which is` um, the options are very narrow. Um, so it's an operation where we, essentially, take the lower leg, um, and we attach it to near the hip joint. But we rotate the lower leg around 180 degrees, essentially, so as we can provide, um, some sort of biological hinge or knee by using the ankle and foot. These people are facing a life-threatening condition and losing their limb, and anything that's better than that is deemed a success for them, and universally, they've been very very happy. (GENTLE, THOUGHTFUL GUITAR MUSIC) His object is to be able to get through this and... and be able to have a normal life ` be able to run again, swim again, do all of those things, with quality of life. I mean, he has gone to hell and back, and he's been living in a living hell for the last four years. And what he wants out of this is a finality and a better future. As a mum, I have seen now what can be done and-and what is out there that can help. I'm very grateful that we have a health department and health support. But it's not all funded, and (VOICE TREMBLES) it's one of the things that really, um, does worry me a lot ` sorry (CHUCKLES) ` is that, um, we have very little. So we have now, unfortunately, lost our house, our home, um, our pets, except for Chaka. I remember when Sean was on the oncology ward, you can't have flowers. But the kids used to have all those helium balloons. And I remember Sean looking out into the ward one day and seeing these things, and he just was longing` I'm gonna cry, I'm sorry. He was longing to have these balloons. And I didn't even have enough money to buy him a balloon. (SOBS) I'm sorry. (POIGNANT PIANO MUSIC) (AIR HISSES) We work at this school to help out, and we do this from Monday to Friday. Normally we get a block of four classrooms we have to clean. We have to vacuum, mop and then wipe all the desks, and I have a lot of trouble doing that on crutches. It is quite important, cos we've gone through quite some hard times, financially. Are you coming? Yup, coming. Just get past the vacuum cleaner. (SPEAKS INDISTINCTLY) (POIGNANT MUSIC CONTINUES) Yeah. How you doing? Uh, good. Can I have this one? 'It's very difficult when you're on your own, dealing with it, because I'm a mum of three kids, 'not just one. And although one is going through this, 'Sean's sisters also need to come to terms with this. 'But we appreciate that, and we also realise that this is a journey that everybody's on.' You like lamb shanks. Right. OK, guys, I need to talk to you about next week. Mm-hm. You know that Sean's going` we're going up to Starship on, um, Monday. And then, um, Sean's surgery is on` on Tuesday. I believe it's very long. It's about 14 hours. It's so long. It's a long time. (FLOWING GUITAR MUSIC) This way. Booked for a rotationplasty, please. Prendeville. P-R-E-N-D` Yeah. We are expecting you in Room 9B. (INDISTINCT CONVERSATIONS) (BEEPING) Sean is actually way ahead on this journey than I am. I was struggling to come to terms with this, but through the eyes of Sean, I have seen that this is actually an opportunity of moving forward into another stage. But we're hoping that this will be the end and it will be the end of seeing my boy sick and in pain. So, are you`? Are you clear about what we're gonna do today, Sean? Uh, yeah. Have you got an arrow on your leg yet? Yep. So we're gonna make a cut that's gonna come around here like this. And this segment is gonna be removed. OK. OK? That allows us then to bring... this part of the leg up to here... Right. ...and make the ankle joint into the knee joint. Be good. Yup. (PENSIVE PIANO MUSIC) (WHIRRING, BUZZING) You make a cut at the top of the thigh bone and then below the knee joint. So that's... That's the hard part of the surgery done, um, where we dissect out the thigh bone, the knee joint and blood vessels in the nerves, take it away. So, if you could imagine, between here and here, there's, uh, cords running ` blood vessels and nerves ` like that. We bring the leg up, turn it around 180 degrees and put it... there. (CLICKING) And the next step is to` is to screw the plate into place with a couple of screws. (WHIRRING) (DRILL WHIRRS) (MACHINE WHIRRS) These vessels are coming out of the pelvis, and they're coming down to the back of the leg, and we just sort of coil them up a bit ` like that ` and then have it travelling into the foot, where it should be going. Cos the nerves are what drive the foot up and down. And the whole idea of this procedure is to have something which bends at the level of the knee. Can you wiggle your toes, Sean? So if you closed your eyes, Sean, which way is your foot going? Um, it's probably going forwards. Right. Feels fine? It doesn't hurt or anything? Feels fine. It's funny how it just works, eh? It is. Yeah. Did you feel strange when you woke up? I felt like my foot was still forward. I'm like, 'Have they done the surgery yet?' (ALL LAUGH) 'Have they just sedated me for ages?' How long's the plaster on for? Just...? We're not really sure. He's healing quite quickly, eh. Mm. So bring your leg back. Well done. Surgery's the sharp end of the event, but there are a lot of other skilled people who add to the success of the procedure ` physiotherapists, and then later on the prosthetists who have to` have to attach a limb to the foot and make it work. It's a big team event. Just small, like... Whoo-hoo. OK. One. A work in progress. Yeah! (LAUGHTER) Needs further training. Nice. Yeah, that's good. That's great. Oh. We call it knee tennis. Oh. I can get it. Sean! (CHORTLES) (LIVELY, BRIGHT GUITAR MUSIC) Here we go. So, you've already started your list of things you want to do, don't you? Yes. Mm-hm. Scuba diving is one of the big things. I suppose, from our point of view, you know, the thing is you've got` although it's a foot, you've got it as a knee, and that gives you a huge advantage as an amputee, and you can do lots of things. Mm-hm. And you can start, you know, ticking off that bucket list a little bit down the track. But there is a bit of time to get to that point. And normally what happens is that once the prosthesis is made, you start to wear it for short times, just to get used to it. So it's a graduated wear. So that's what we call a graduated wear. And weight-bearing as well. So, you know, it's not like you'll strap it on, and off you go all day. I'll cast right up the thigh. 'We're about nearly a month past the surgery, and Sean has done much better 'than I think anybody anticipated.' And out to the side. That way. Oh, yeah. But I think what I've realised after seeing the Limb Centre is we have quite a steep hill to climb. Lie down on your back, Sean. But the target is actually a new normal. It's never really gonna be back on to full two feet. So we have to just, um, I guess change your expectations. Um, on the positive side, I have never seen so much motivation in Sean. It's, um, so rewarding. Lift your leg up, rather, till you're` till you're there. Like, I can cope with pain extremely well cos I've had to live with so much pain and live with pain every day of my life. Really work the muscle hard. All right? Mm-hm. And then relax. Yeah, no, there'd be good days and bad days, and I would, you know` I'd just realise that physio is actually quite hard and that I've got a lot of work to do. (SOFT, THOUGHTFUL MUSIC) (MUSIC CONTINUES) I'm quite surprised by, you know, sort of, all what's been going on and how fast this has actually happened. Sort of thinking a little bit about the future and how this is going to affect my life so much. And it really has affected my life quite a lot. (CHUCKLES) Today is the day. Today really is the day. OK, Sean, vault on up on there. Yeah, right. No worries! (CHUCKLES) No worries. Listen, what` what I'm gonna do is make a mould. BOTH: Yep. Right up to here. Right. In three` three` three parts. Right. And then, uh... So from that mould, then I'll start making... do some modifications on the actual cast... Right. ...to, uh, just allow for extra growth. We used to do this to plates when you're wanting to preserve the food, and then put it in the fridge. Yeah, I know. Yeah. Turns out... ...you can do it on your leg. Yeah. (LAUGHS) You thought you only did this in... They have to, like, almost make a mould of the foot first, just to get weight and size and everything right. Otherwise, it may not fit the best. Yeah. Kneecap. OK, Sean, breathe. Mm. 'From that cast, we end up with a positive mould' of Sean's limb. And so from that positive mould, we fabricate a fibreglass socket. The socket is fabricated from,... uh,... fibreglass ` fibreglass and nylon stockinet. (MOODY ELECTRONIC MUSIC) OK, can you remember how it goes? I can remember, I think. Sideways or something like that. Go in sideways. That's the one. Shorter, but... That's all right. He's gonna grow. Yeah. It's good. It's better? Look at that. Yup. Right. Whoo-hoo. First step, Sean. Yeah. Step. (GASPING) (INDISTINCT CHATTER) GIRL: Is he doing...? He surprised, I think, everyone, actually. He was up against it right from the start, because his osteosarcoma was particularly aggressive. I think people were a little pessimistic as to whether he was gonna get there in the end. But he has, um... he's proven everyone, um, wrong. Look at that. It's takes a motivated patient and their family and people around them for this to be successful, and Sean certainly did his part, and, um, I think, as we can see, two or three months out now, he's... he's looking good. Toe, heel. A little bit more, Sean. Yeah! It's just` It's an amazing feeling to see your son, who has battled for so long, to walk, uh, take his first steps. And I just, um` We believe that we're just up and this is a new beginning, a new day, (SOBS) and I'm sorry, but I'm very emotional. (RISING MUSIC) I'm definitely going to walk again ` I know that ` and going to try as hard as I can and add more. (CHUCKLES) I can practically almost do anything with the rotationplasty. In the beginning I expected to just go back to normal life ` do everything as I was and... Um, yeah, it's been a struggle. Yes, my life is sort of... Yeah, it's` it's OK. I'm trying to get back in there and do stuff. It's pretty` pretty hard. Then when I got to college, I guess I didn't know anyone. Oh, I used to go to Kapiti College, but I wasn't really achieving there at all. Don't exactly have the means to hold in information for long periods of time and then, um, I guess, write tests and exams and that type of stuff. Probably spent half of year nine entirely out of school. And I spent a good three-quarters of year 10 out of school. OK, guys, how was your lunch break? BOY: Good. Good? (LAUGHTER) Who won the cards? Me. Me. OK, so we're talking about... guesstimates. So we're in this classroom. And so we wanna put in a swimming pool, right? A swimming pool into our backyard the size of this classroom. I've decided to go to Capital Training, give it a shot. Yeah, it's just easier, smaller class sizes, and more one-on-one time with tutors and stuff like that. Sean, if you can just jump on this end. From, I guess, high school and all of these, sort of, social groups and places, it's definitely a lot harder to sort of blend in; and, like, conversations normally start with 'hello' and end with 'goodbye', and there's not really much in between. Sort of just awkward (CHUCKLES) silence. All right, let's start with this one. (PLAYS 'A') I sort of fell in love with the violin. I feel really joyful. I feel like the` it's the first time I've ever heard the violin each time I play it, even though if it is a little screechy. (CHUCKLES) (PLAYS 'TWINKLE, TWINKLE, LITTLE STAR') You can sort of just absorb yourself into the music. And there's no proper way to play music; it's about what you feel, not about what everyone else does. Gives me a challenge and it's really gr` quite passionate about it. So from the A. (PLAYS SCALES) I guess I do find joy and happiness in some quite little things ` tea and stuff like that. Um, most people, you know, just... when they're brewing tea leaves, they would do it quite quickly. They don't really think about what they're doing, but I guess I do things quite precisely. So it's more... more as` less as a task or something you're doing and more as a ritual to just calm yourself down. Bit of rain, mate. All right, so put this on. That's your suppressor. How I originally got into hunting is, um, a very kind man called John Trask. Just lay yourself down and just try and get comfortable and try and get... Just see where you need to go with this so that you can tuck that into your shoulder. Yeah, he's got a son who's the same age as me. Bring it in. And... That finger along the trigger guard until you're ready to fire. OK. Just take your time. Get your breathing right. And on your last breath, you let your breath out and just hold it, and that lowers your heart rate right down to` to nothing, and then just squeeze the trigger. (GUNSHOT RINGS) Yeah, he took me out into the bush a few times, and I sort of fell in love with it, and... last year I shot my first stag. (GUNSHOT RINGS) Mum was very happy cos the deep freeze was full of meat. I felt like I was giving back and providing. How's school going? Yeah. Keeping out of trouble there? (CHUCKLES) It's doing well. Yep, yep. Study's going all right? Yeah. Oh, you know, that's good. That's good. 'I guess going out and` I guess, into the bush with these guys is pretty special for me, 'because I don't really have any guys in my life that, I guess, I can depend on, and it's good.' He's just an interesting kid. He's just passionate ` passionate about everything. I like to see the smile on Sean's face and the smile on my boy's face. That's just` That's why, I think` why we all hunt. And, um, Sean gets a few deer as well, and so the meat goes to the family. Oh, OK. That's all right. So there's a little bit of work to do. So those... Those shots there are... are your guys ` 6.5s,... Yeah. ...which we haven't had a chance to sight in properly. So we'll just bring it across, and then we'll be shooting in the bull before you know it. Excellent, mate. Excellent. I've seen his confidence come up a lot, and, you know, Sean is growing into a young man now. He's a teenager; he's a young man. And he needs his independence. And you need to have some success in life. He worries about what he's gonna do in the future, Cos he feels he needs to find his place in society and find a meaningful job. We say it's a never-ending journey, but I have to believe one day it's gonna finish positively. It's probably been a lot harder for my family than me ` watching me and wanting to help. But they can't really do a lot when you're dealing with cancer and the chemo and the stuff like that; when you come back, sort of, facing reality and going, 'What do I do next?' But, um, I think,... yeah, overall, we've` we're doing good and we're getting our life back together, and, yeah. (DREAMY PIANO MUSIC) My life expectancy is quite low. I guess I love the world a lot more now and appreciate it more. I am quite observant about what's around me, and, yeah, just love the bush and animals and... everything, really. There's not a lot that gets me sad or angry. It's just, you know, I find joy in pretty much everything. (PENSIVE MUSIC) I` I always try to get out there and persevere and better myself. My worries for the future would be, um, future expenses for studying and, if we can afford, get a car and start driving. (POIGNANT MUSIC) I got to a point with my cancer treatment and chemo when I sort of decided that there's no point, I guess, being negative about everything, cos it's not gonna change anything; it's most likely just gonna make you a lot more stressed, and it, uh` and it increases the possibilities of cancer coming back. (UPBEAT MUSIC) Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017