Captions by Tracey Dawson. www.able.co.nz Captions were made possible with funding from NZ On Air. Able 2014 MONITORS BEEP I'll be waiting for you afterwards, OK? I'll be waiting for you afterwards, OK? Yep. Gimme your hand. Are you clear about what we're doing today, Sean? Are you clear about what we're doing today, Sean? Uh, yeah. Have you got an arrow on your leg? We're gonna make a cut that's gonna come around here, like this, and this segment is gonna be removed. OK. OK. OK? that allows us then to bring this part of the leg up to here,... Right. Right. ...and make the ankle joint into the knee joint. Be good. Be good. Yep. GENTLE PIANO MUSIC Here. Go, fetch. Go, go. My name's Sean and I'm 14 years old. TOY SQUEAKS I have a lovely dog, Sharka, and he's my best friend in the world. And I've got a blue-tongue lizard. His name's Gizzie. Yep, Gizzie-wizzie. Sean's always been a quiet boy, but his passion is bush and animals and nature. 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's what's really annoyed him is that, you know, he couldn't go rock climbing and he couldn't go doing all these things. In 2010 my leg was diagnosed with a bone cancer, or an osteosarcoma. 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 an appointment in Wellington Hospital. I don't think we actually left a hospital for about six months. EMOTIVE STRINGS Osteosarcomas are 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. Every bead, sort of, means something. So the lumpy ones like that stand for challenges. And the larger ones are major surgeries. 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. Next week we will fly up to Starship Hospital and Sean, on the following day, will go through his rotationplasty. 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 then it 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. KIDS CHAT INDISTINCTLY It's quite sore these days, and stops me from getting to school and doing work and those things. Just walking in general, it twists quite a lot, and will click out of place every now and then. 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. So it's an operation where we essentially take the lower leg, and we attach it to near the hip joint. But we rotate the lower leg around 180 degrees, essentially so as we can provide 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. MACHINE CLATTERS I'm Jess. I'm studying a Bachelor of Design and Fashion. Doing my Honours degree at the moment. I had cancer in my femur. I think I was about 8 when I got diagnosed. I was one of the first in NZ to have the rotationplasty. My surgeon will ring and say, 'There's another one coming through.' And, yeah, I basically just go and meet up with them. And I don't mind doing it, because it would've been really helpful when I was in that situation to have someone to look to. ACOUSTIC GUITAR MUSIC Nice to meet you. Nice to meet you. Thanks for making time to see us. Nice to meet you. Thanks for making time to see us. Nice to meet you, Sean. So, we have so many questions. One of the things that Sean really likes doing is outdoors. He's passionate about hunting and skiing and` So I guess that's what we're really wanting to know, with this, are we gonna be able to do things like` Can you walk` hike? Can you go on uneven terrain? Yeah. I'm not a huge hiker, so I haven't gotten massively into hiking, but you definitely can. People ski with them, people, um` swimming, everything. Can you drive? Yep, I can drive. I've got an adaption in my car which means I drive with my left foot now, so it just crosses it over. Um, and you can just take it off so someone else can drive. Do you remember much about your surgery and what happened? Um, I don't remember a lot. I remember my surgery day ` being wheeled in, being quite frightened, but definitely knew that, like, what I was doing was something I needed to do. So, did you guys wanna see what the leg looks like with the leg off? So, did you guys wanna see what the leg looks like with the leg off? Yeah, we'd love to. The top half here, these are something I got made. It was just a cosmetic thing cos what's underneath is really skinny. So Dad contacted Weta Workshops and got these thighs made. VELCRO RIPS Foot kinda sits inside my prosthetic. So when I'm moving my knee, it's actually me moving my foot. Look at that, Sean. That's pretty amazing. This... Particularly this bit your dad's had made. It's just incredible. Initially, I got a lot of blisters, just cos the foot wasn't used to being inside something like that all day. So that was for the first few years, I think, but they lessen quite a bit. I'd heard it's quite expensive, the` I'd heard it's quite expensive, the` Yeah, getting the mould done's the most expensive part. Um, and then I've had the mould changed, I think, only twice, just as I've grown. Right. Right. And now it's pretty much... Your dad would have funded` Your dad would have funded` That's self-funded, just cos it's a cosmetic thing. It would make a huge difference to your confidence. Definitely a huge difference. But I didn't have that for years, just because I was so skinny, kind of like you are. Like, that didn't look too much different to that. So it was fine. ACOUSTIC GUITAR MUSIC JENN: His object is to be able to get through this 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, with Jess, 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... (BREATHES SHAKILY) it's one of the things that really, um, does worry me a lot ` sorry ` is that, um, we have very little. It will be heartbreaking for me if we get to this point and he goes through all this pain and this challenge, and then I find that he can't swim or he can't run or he can't climb. Oh, we only have seven, right. Oh, we only have seven, right. Seven. Seven. Seven cards. When Sean was diagnosed, it precipitated a lot of long-term problems. So we have now, unfortunately, lost our house, our home, our pets, except for Sharka. When Sean was on the oncology ward, you can't have flowers. But the kids had 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. SOBS: And I didn't even have enough money to buy him a balloon. I'm sorry. VACUUM CLEANER HUMS We work at this school to help out, and we do this from Monday to Friday. Normally, we get a block, or four classrooms, we have to clean. We'll 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. You comin'? You comin'? Yep, comin'. Once I get past the vacuum cleaners. Once I get past the vacuum cleaners. (CHUCKLES) Yeah. How you doing? How you doing? Uh, good. Can I have this one? 'It's difficult when you're on your own, dealing with it, 'cos 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.' Right. OK, guys, so, I need to talk to you about next week. You know that we're going up to Starship on Monday. Yeah? Izzy, you understand? OK, so, Izzy, you're going to your camp; Anna, you're going to get stuck into your studies in the first week of the holidays. Yep. And then, um, Sean's surgery is on Tuesday. I believe it's very long ` about 14 hours. So don't sit around waiting. So don't sit around waiting. < It's long. So don't sit around waiting. < It's long. < It's a long time. ACOUSTIC GUITAR This way. You all right? You all right? You all right? Yeah, good. Booked for a rotationplasty. Prenderville. P-R-E-N-D-E` Yeah. We are expecting you in room 9B. 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. 'I think being negative will get you nowhere in life, 'and there's not really much point of being sad or frustrated about something.' Even though being a little bit sad for what's going to happen is OK, but it's no point looking a negative point of view of anything. It won't help you at all. Wanna see these again? Wanna see these again? Oh yeah. OK, so, there's the metal implant going down into the knee joint here. OK, so, there's the metal implant going down into the knee joint here. Right, OK. So that segment's all coming out, right up to here. We're gonna move it all up top. We're gonna move it all up top. Right. OK, well, we'll get on with it. I'll go and have a cup of coffee and a scone, and we'll see you through in the operating room, eh? Yeah. > Yeah. > Yep. MONITOR BEEPS, AIR HISSES BUZZING We make a cut at the top of the thigh bone and then below the knee joint. So that's the hard part of the surgery done, um, where we dissect out the thigh bone and the knee joint and blood vessels and the nerves. Take it away. So if you can 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. And the next step is to screw the plate into place with a couple of screws. DRILL WHIRRS These vessels are coming out of the pelvis and coming down to the back of the leg, and we just 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? > 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? Feels fine? It doesn't hurt? Yeah, it feels fine. It's funny how it just works, eh. It's funny how it just works, eh. It is, yeah. Did you feel strange when you woke up? Felt like my foot was still forward. I'm, like, 'Have they done the surgery?' ALL CHUCKLE ALL CHUCKLE 'Have they just sedated me for ages?' How long's the plaster on for? We're not really sure. He's healing quite quickly, eh? We're not really sure. He's healing quite quickly, eh? Mm. It's good that you're out` I wasn't out of bed for ages. Definitely not this quick. 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 attach a limb to the foot and make it work. It's a big team event. Do a small, like` Whoo-hoo. A work in progress. A work in progress. < CHUCKLES: Yeah. < Needs further training. Nice. Well done. We'll call it knee tennis. > Oh, good shot. (CHUCKLES) LAUGHTER Here we go. Is it Sean or`? That's the American way ` Sean. That's the American way ` Sean. Oh, I see, yeah. (CHUCKLES) So, the reason why Sean has chosen this option is that they said, 'We can try and patch it up, 'but you'll still be limited in what you can do.' And Sean says, 'I'm planning to beat the cancer, 'I'm planning to be here, and I want a leg that works.' So that's why we're here with you, because hopefully you're the positive solution that you can give us legs that can do what we want them to do. that you can give us legs that can do what we want them to do. < Oh, absolutely, yeah. And not be limited in actions, yeah. So you've already started your list of things you want to do. So you've already started your list of things you want to do. Yes. Mm-hm. Scuba-diving is one of the big things. I suppose from our point of view, the thing is although it's a foot, you've got it as a knee, and that gives you huge advantage as an amputee, and you can do lots of things. And you can start 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 once the prosthesis is made, you start to wear it for short times, just to get used to it. So it's what we call a graduated wear. And weight bearing as well, so it's not like you strap it on and off you go all day. 'We're nearly a month past the surgery, 'and Sean has done much better than I think anybody anticipated. And out to the side. That way. 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.' 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. On the positive side, I have never seen so much motivation in Sean. It's, um, so rewarding. Lift your leg up, rather, to` there. I can cope with pain extremely well, cos I've had to live with so much pain. Live with pain every day of my life. Really work the muscle hard. All right? And then relax. You know, there will be good days and bad days. And I` I just realised that physio is actually quite hard, and that I've got a lot of work to do. Yeah. Easy. (CHUCKLES) I remember it being really tiring. While you trying to adjust to having all this done, you're also having to do all this rehab, and it's the boring-est exercises, and all that kind of thing. I told him that the best outcome will be if he puts in the hardest work in rehab, as crappy as it is to have people make you do boring physio exercises. It's just something that you have to maintain in order for it to be really functional. GENTLE MUSIC I'm quite surprised by all that'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. Today's the day. Right, Sean, vault on up there. Yeah, oh, right. No worries. Yeah, oh, right. No worries. (CHUCKLES) So what I'm going to do is make a mould right up to here, in three` three parts. in three` three parts. Right. And then` So from that mould, then I'll start making` do some modifications on the actual cast... Right. Right. ...to just allow for extra growth. We used to do this to plates when you wanted to preserve the food and put it in the fridge. Yeah, I know, yeah. Yeah, I know, yeah. Turns out... You can do it on your leg. You can do it on your leg. Yeah. You can do it on your leg. Yeah. LAUGHTER They have to, like, make a mould of the foot first, just to get weight and size and everything right. Otherwise it may not fit the best. It's pretty cool. Yeah, see, I'm just holding the foot so it gets a better contour in the finished limb. Cos the foot coming down here becomes the back of the calf. Cos the foot coming down here becomes the back of the calf. OK. And the heel becomes the kneecap. OK, Sean. Breathe. 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 and nylon stockinet. What Ange is doing is she's tipped the resin down through the top there and she's stringing it out. The resin is evenly strung out through the layers. And so she's got about 10 minutes of working time to string that resin down through all those layers before it starts to gel. PIANO MUSIC (WHISTLES) What you got on, there, Sean? Just the socks? What you got on, there, Sean? Just the socks? Yeah. They're quite thick socks. You want to go in` You want to go in` ...sideways. You want to go in` ...sideways. That's it. Swivel it in. Oh! I'm not good at this. This is definitely a learning curve. Yay, it fits. Yep. Right, you all right? Right, you all right? Yep. Ooh! It's on. Ooh! It's on. It's on. > Wow! Look at that. What's it feel like? What's it feel like? Um... dunno. dunno. Is it comfy in here? Uh, sort of. Uh, sort of. Sort of. It's gonna take a while to get used to, eh. You can have a crutch or on the rails. The idea is to try and get that as straight as you can. The idea is to try and get that as straight as you can. Oh, I can get my foot... You'll have to remember to wear thin socks. You'll have to remember to wear thin socks. That's good. That's good. Yeah. Yeah, it's a wee bit long. Yeah, it's a wee bit long. < Is it high? Yep, just a wee bit high, so we'll shorten that. We're looking at an energy-saving prosthetic that's, sort of, a bit harder to learn how to use at first, but once you have it, you can do almost everything with it, join in with everyone. That's quite important to me. You wanna move forward a bit? < Or I'll move the chair back. < Or I'll move the chair back. More off that pylon. > Straight back. There you go. Thank you. You know, you see people like Jess with their prosthetics, bounding through life, and you never really stop to think of the amount of energy that goes through that. And we're beginning to learn now, just the energy` It's not just the fitting, putting it on; the energy it takes and the commitment to overall fitness to be able to drive a leg is quite substantial. And I don't think any of us that have two legs really think about that until you're in them. OK, well. > Brought short. Brought short. Yeah, no, that's looking good. LIGHT STRING MUSIC Right, can you remember how it goes? I can remember, I think. Sideways, or something like that. I can remember, I think. Sideways, or something like that. Go sideways. That's the one. Shorter, but` Shorter, but` That's all right. He's gonna grow. < That's about it. < That's about it. Look at that. Yep. Yep. Right. Whoo-hoo! First steps, Sean. Yeah. LIGHT, HOPEFUL MUSIC He surprised, I think, everyone, actually. He was up against it right from the start because his osteosarcoma was particularly aggressive. People were a little pessimistic as to whether he was gonna get there, but he has, um` he's proven everyone wrong. It takes a motivated patient and their family and people around him for this to be successful, and Sean certainly did his part. And I think as we can see, two or three months out now, he's looking good. < Heel. A little bit more weight on it, Sean. It's just` It's an amazing feeling to see your son who has battled for so long to walk take his first steps, and I just` We believe that we're just up and this is a new beginning, a new day. And I'm sorry, but I'm very emotional. I'm definitely going to walk again, I know that. And going to try as hard as I can and` and do more. (CHUCKLES) Can practically almost do anything with a rotationplasty. Captions by Tracey Dawson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014