When Life Shatters: A Mother and Son's Journey Through Osteosarcoma

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I was reading the initial scan that actually said and I think this is when it hit me most likely diagnosis osteosarcoma from the initial scan.

When mummy was a little girl and mummy left her dad when it hit me most likely diagnosis osteosarcoma from the initial scan Underfoot. We're trying to do the best we can, but it's not very good. Daddy's really sorry, he didn't mean to shout. We all get a little touchdown. We all get a little. We all get a little. We all get a little touchdown.

All right, Today is super, super special. For the first time, apart from the episode that I did with my wife George, we have our first in-person episode. So today we've got Chantelle.

Thank you for having me.

Thank you so much for coming. So what we do? You have been listening to the podcast, so what we do first and foremost is go through a little bit about yourself and a little bit about your family Cool Go ahead, wendy.

Oh God, all right, when do I start? Can you give me a starting point? Who are you? Okay, I am Sorry, the nerves. I am an only girl. I have seven brothers. I'm the oldest. I have quite a traumatic background myself. I was a young mum. I had the age 17. I work in disability support and I have ADHD, so I'm quite strong.

Yeah, well, you will find your family here.

Yeah, so you have one son, I do, levi, I have Levi, thank goodness I also have endometriosis, so I have, since Levi, lost both my tubes to ectopic pregnancies, which makes him even more special than he already was.

Yeah, yeah, so it's a one and done without choice.

Yeah, well, I think I have a partner now and we can look into IVF. We'll be able to do that Is that something that's on the horizon?

Yeah, want more. Yeah, and we, as everyone knows, we have three and I now have the snip.

Just because all three of them progressively tried to kill George even more. Oh no, which is ridiculous.

I'm so nervous. We wanted four, but after Salem both of us were like no, I can't do it anymore. She lost too much blood.

That's horrible. I hear all of these stories and I feel so bad because for years I say to everyone you'll be fine, it's the best thing that ever happened to me. I loved my labour and I think I'm the only person that, so I thought at least put people into shock.

Yeah, yeah, you're one of them. No, george is pregnant, that's what.

That's so horrible. So not one of them was calm nice.

No, no, none of them were good. Hendrix was a induction because George had what's it called Gest, no, not gestational diabetes. The other one, that Was she really sick. She had really bad fluid retention in her feet.

Yeah, I can't think of the word now either. Oh, that's going to kill me.

Yeah, it's going to annoy me too. Oh well, that one, let's get it.

We'll go back.

Yeah, so that was that. And then Hendrix was a shoulder dystocia, so she got stuck, born unresponsive, had to have some work done on her and then George hemorrhaged.

Oh, wow.

Second birth was Roman, yeah, and he was rushed to NICU at 15 hours old to undergo life-saving surgery because he had a twisted bowel. So he spent his first two weeks in NICU during COVID, so George and I were unable to spend time with him together for the first two weeks. It was a hard one. And then third one Salem was an emergency C-section. Sorry, rome was a C-section as well. Yeah, salem was an emergency C-section under general. Wow.

They gave her like eight, nine, ten, I don't know how many epidurals, and none of them worked.

Wow yeah they kept giving her more and giving her more and they were like doing the ice bag test, yeah, and her more and giving her more. And they were like doing the ice bag test and she's like, yeah, I can feel that. They're like no, you can't. And then the doctors would hold their hands above her legs, they like kick, and she was just like like no issues at all. We had an entire team of anesthesiologists in the or looking at each other being like what's going?

on.

This is not a human georgia yeah, so they had to put her to sleep.

Emergency caesar and very close to die massive oh my goodness three liters or something like that oh, wow, yeah, okay, I might rethink my after that after that, yeah, didn't want to do any more with that you're right.

So I want to talk a little bit about you and growing up, yeah and uh how you came to be the 17-year-old mum.

All right, I when I was young. My mum remarried when I was very young one or two, can't quite remember and the man that she married became my father. I didn't have much to do with my biological father and he's the father of majority of my brothers. So up until 15, it was great. I loved. I was a daddy's girl, loved my dad, and then my parents divorced. So my parents Gary, my father that took me on and things kind of spiraled from there. My mum remarried someone that shouldn't have been around kids or girls, and I was the only girl in the house. My teen years and a lot of my childhood really revolved around raising my brothers and being the maternal one in the household. And my heart's racing, it's all right, you take your time.

And it's probably the first time I've said this out loud, but I'm going to do it because it's my story. My mum wasn't maternal and wasn't very supportive in those situations, yeah, and then we moved away to oh sorry. I started dating Levi's father quite young and then my mum decided that we were moving away from the eastern suburbs to the country where we would then reside on 120 acres of land. I'd stayed with Levi's father and he would come up every weekend and I fell pregnant and it was the best thing that ever happened to me. I, prior to that, my brothers, were my world they still are my world, obviously but I had nothing, no reason to leave and keep myself safe or leave for my own sanity until I was pregnant and decided there was no way that my child was going to be around. It's honestly. I feel like the universe had my back. It's the best thing that ever happened to me.

So you moved out at 17 with a newborn baby.

So I moved out at 17 to Jovan's family my father's family household at pregnant still, and we had Levi down here and then I was very close with his family. I learned a lot, a lot through them and we lived there for four years and we were saving my home, do all of that kind of them. And we lived there for four years and we were saving my home, do all of that kind of stuff. And then we separated. We just outgrow each other. We still respect each other. We're still great friends and there's not. I couldn't have chosen a better person to have a child with and to co-parent with. Yeah.

I love hearing that.

Yeah, and I think also because I was raised I was around quite toxic divorces and separations and relationships. I just always knew it's not what I wanted to do. I didn't want to waste my life doing that and making someone else's life hell or not having a chance to move on myself.

Yeah, yeah, definitely yeah, it's a lot. It's a lot of emotional maturity for a 17 year old.

Well, it's funny, I always I feel like I say Levi's been here before and I don't want to put tickets on myself, but I feel like I always felt like everyone thought the way I did until I realized they didn't. And I definitely have lived many lives before. Just the way that it naturally, naturally comes, yeah.

Yeah, we often talk about George and I talk about if we've lived lives before. I'm a freshie. I reckon you think I'm a little too. What's the word? Rose-tinted glasses?

Yeah, naive.

Yeah, naive, that's the one you know. Yeah, I give people too many chances. Yeah, yeah.

I feel I mean, there's things in life where I think I definitely haven't done it before, and it's when I react to things or I become really emotional and can't regulate myself. But then there's times where, you know, I get to a point where I just feel nothing and I'm like I've done this many times before. I just needed that one little last lesson in this.

Yeah, yeah, that, that um wisdom that's being passed down through the times and whatnot.

Yeah, yeah.

I love thinking about that.

Yeah, we do too. We love talking about it, it's cool.

So you did mention that you have ADHD. Yes, when were you diagnosed?

So I was diagnosed during COVID. One of my brothers was diagnosed really young and then re-diagnosed in his early 20s I think, and I was in the appointment with him. We were quite close. We have a love-hate relationship but we are very close. He's the naughty boy in the family who now is the most calm, but he asked me to go to a psych appointment with him. He actually had just done some time away after being quite reckless.

Time away as in prison? Yes, okay.

I think it was juvie Juvie yeah.

I'm not quite sure. I was too emotional, I couldn't deal with it. I didn't know too much, too well. Yeah, and I was in this appointment and for the first time he opened up about his past. But he only wanted me and I was. The butter wouldn't melt in my mouth. I'd not partied because I had Levi Young. I'd not really done anything naughty.

I mean now I've lived a little bit more, but back then it was people kind of kept things hush hush for me. I guess they felt like they were going to be judged, which was never the case, but I understand. And so it was really heartwarming but also huge for me to be in this appointment where all these things people had said my brother had done and I was like no way, no way, he's not done this, not done drugs, not done anything for him to. I don't want to say too much because it was private, but delve really deep into everything that he'd done and say I'm so sorry you need to hear this, but I needed you here. And it was huge. And one of the things he said and it was something tiny, I can't even remember I went my goodness, he's being diagnosed with ADHD and that was her main focal point rather than everything he'd done, was this one little detail and I was like I do that too, okay.

So it sat with me for a year and I thought I don't really want to know. I love myself, I love my personality. And then I started to think really deeply about the not so great traits, like the fact that I've tried to do my nursing five times and been staring at birds out the window and unable to focus Just all these little things. Maybe a lot of my coping mechanisms were from trauma and now that I'm so happy in my life and I feel so safe, I definitely wasn't able to mask them anymore without even realising I was masking. So that was would have been mid-20s when that happened, I think I got diagnosed. I think I was 28. Maybe I'm 31 now.

So late 20s. So three years. Yep, I'm on three years too. Similar timelines. I'm a lot older, yep. I always find it quite funny how you know the whole rhetoric of COVID vaccines give you autism. Yep, I don't think it was the vaccines, I think it was lockdown.

Oh yeah.

I think for the first time in everyone's lives, they were forced to stay at home.

To deal with themselves. And regulate and realise that they were just all existing in severe emotional pain. Absolutely yeah, that was me. Because I worked nonstop, I was always finding ways to not be alone. I hated being alone, and when I had to be alone I didn't cope. And then I wondered had I just watched too many reels on people having ADHD? And then you spiral down this whole thing.

But yeah, it's definitely there. It's crazy. Yeah, I think everyone was just like I don't actually like being around people that much.

Yeah, absolutely.

Yeah, very, very good, so medicated now.

Yeah, medicated, and that's been trial and error.

I mean, have you been on a few?

Yeah, and I can't even remember what I've been on. It's funny, I have really bad memory and, surprisingly, when I'm perfectly medicated.

That's when it's so strange. I was saying to my partner it was scary. At one point I thought do I have early onset Alzheimer's because of dementia? It's that bad that he will say something about the previous week and I have no recollection. But then I realized it's only when I'm on my medication that I'm obviously just so calm and I'm just getting through life the way that I should be, that when I'm unmedicated or I don't take it, that day I feel like I don't remember anything.

Yeah, definitely. I feel like with late diagnose we have had to develop this system of survival and I like to think of it as like a mailman inside my brain. It's just fucking like grabbing at every thought and organizing it the best they can, and then the medication slows that down and for the first time the mailman can just take a breather. Yeah. But because of taking a breather he's a bit complacent, so he starts to forget shit.

It's funny, it's so nice having one thought at a time.

Yeah.

But you do have to learn to deal with that.

Yeah, but if it's something that you want to retain, for me personally, if it's something that I want to retain, it's kind of like you remember Nokia snake. Yes, it's like snake, but the snake gets shorter and shorter and it eventually catches up to the head and you die. That's how my brain operates, with like deep thought, with when I'm creating or whether I'm writing or anything like that. Yeah, I only have this finite window to get it written down before, like, the forgetfulness catches up to me. So I could start thinking about a book that I'm trying to write and in my head I'll map out like a couple of sentences and by the time I get to the third sentence, I can retain that third sentence, but I can't remember anything of the first two sentences. I'm just like what the fuck is this? Even about Absolute, absolute waffles?

I have so many journals and I look back and I'm just like what the fuck? Is this even a bit Absolute, absolute waffle? I have so many journals and I look back and I'm like you're so smart.

Who thinks this is a bit yeah, yeah. So I am still trying to get into the habit of like recording everything or writing everything down. Yeah, getting it documented somehow so I can remember it.

Yeah.

And even then, that doesn't work. I can record a video If I have an idea. I record a video to remind myself and then a week later I'll look at it and be like I don't know, what you're talking about at all.

Well, it's funny because I used to have this sick addiction to Snapchat and I was late, late, late bloomer with Snapchat, like everything. I hated TikTok when it first came out. Now I'm hooked. But I got so bad that I recorded every single waking moment of my life on Snapchat and I didn't send it to everyone. I just recorded and saved and I've never rewatched any of it. And it wasn't until I realized that that was a huge coping thing for me, because obviously I'm only realizing now how bad my memory is when I'm medicated, but it's obviously always been there. So I feel like, deep down, I was doing that so that I was capturing my life for myself.

It's so funny and I actually lost my original Snapchat account and it was the worst day of my life and I wondered why I was so upset about it. And now I look back and think I feel like I lost a part of me because I was always there Just trying to remember those things and I never wanted to look back on them, but they were there.

Yeah, yeah, I do the same. I've got so many fucking so many videos and even, like, with the kids' lives, I remember, like I remember the kids' lives. Obviously they're my kids, I love them, I adore them. But if I try and think about not a specific memory or just kind of like an overarching, like joyful memory, if you were to sit there and be like what are your top five memories of when Hendrix was 12 months old, yeah, no hope. I'd have to look at my phone and see what that timeframe was and like where she was at and all of that. Yeah, because I always think you know like cop shows and they're following up on a witness or something or checking alibis and be like where were you on January 28th between 12 and 6?

And they're like I was at the bar and you can check the cameras. I'd be fucked. I would be suspect number one because they'd be like where were you yesterday morning? I'd be like no comment, I can't remember.

Hang on, I think I've got a video of that.

Yeah, it's crazy. I hate it. It's a memory thing.

It's a horrible feeling. I'm so glad that someone else understands because I feel like everyone I talk to about it they just can't get their head around it.

Enjoying the show. Make sure you hit, follow or subscribe so you never miss an episode, and if you found this helpful, share it with a friend. It helps more than you know. I'd also love to hear from you Leave a quick review on Apple Podcasts or Spotify, or head to TouchedOutcom and leave me a voice message. Yeah, it gets to a point even where it creates conflict in my marriage with George and, like you guys have seen, george and I talk to each other like we love each other to death. But you know, there's things that I forget that she was relying on me for and it sucks, it sucks. And then she kind of has to sit in between this like pissed off at me, versus trying to be supportive and understanding of the fact that I am just very, very forgetful. And it's not.

There's no malice intended or anything like that yeah but when it's like her asking me to go pick up medication that she needs after work and then me getting home, yeah she, her being like where's the meds? And I was like I was just excited to come home to see you guys, I forgot? Yeah, it does. It makes me feel like a failure.

It does and I why can't?

I remember that. I can remember every single freestyle rap battle from 8 Mile and I haven't watched that fucking movie in 10 years. Can't remember to pick up meds for my wife.

I know it's horrible Stupid. I want to voucher a sexy land voucher At the pub once because I could recite the entire Eminem. I can't remember which song it was, but every single word. And I was in a rap battle which I didn't even know. I knew the song. But I'm the same when it comes to things like that. I get myself in these bad situations because I'm also very argumentative, because I forget that I have a bad memory. So my partner will say something and I'm like, no, that's not how it went. And I actually kind of remember how it went, but it didn't go that way until 10 minutes later. I'm like I actually don't remember. No, you're probably right.

Yeah, george and I had a really deep discussion one night about. She said that she feels like I'm manipulative sometimes because I say things and then when we talk about it after the fact I'll be like I didn't say that, yeah, and she's like that's kind of gaslighting. I'm like, no, it's just that. I know, but that does make sense so that's why we, anytime we have to have a serious conversation, where words matter, we text it to each other.

Yeah, it's funny, I, we text it to each other. Yeah, it's funny, I also. I'm a big texter and you're obviously the same and my partner's not, and sometimes I get a bit upset that he doesn't respond to things even though they're there. But I'd never thought of it that way, that I do it, because he'll say why are you sending huge, huge texts? Or I go on and on about something, but it's probably for myself, because I then go back and search in my messages, and it's not to be argumentative and it's not to win a point, it's more because I feel like I'm losing my mind.

Well, for me it's definitely. I want to make sure what I'm saying is the thing that I'm in, and if it's conflict, or if I'm heightened or if I'm feeling a bit overwhelmed or anything, verbally, that's never going to happen Because I feel like I'm backed into a corner. Fight flight, yeah, Fight flight freeze fawn All of that stuff. I'll end up just either like saying nasty shit that I don't mean, or getting completely jumbled and just kind of going like non-verbal.

It's in here, but it's not coming out. I don't know.

Yeah, it's too much. So, yeah, texting works well for us. Yeah, it's too much, so, yeah, texting works well for us. Yeah, so you're in disability support work. You've been doing that, you said, for 15 years.

Yeah, I think 10 to 15, like in between. So I've obviously had breaks with things like this and I did have a breakdown in 2019 due to something at work and just a lot of stuff, really. I went on to study patient transport and I've always been studying nursing in the background, but I keep going back to disability sports. It's what I know best, yep.

Love it.

Love it, love it, love it. That's good Fulfilling, it is yeah. Yeah, I considered doing disability support, but I feel like there's a few too many old people that would probably be like get your hands away from me, you big tattooed brute.

Yeah, Actually it's funny, In disability I haven't really.

So that's aged care.

No, it's very different yeah.

Never mind me then.

I do aged care as well now and it's funny, my best girlfriend originally came to work with me in disability and she went and moved on to aged care and called me over to work there and was like you'll love it, it's so different work there and was like you'll love it, it's so different. And yeah, I definitely prefer disability. It's nice. I only do HK casually and it is nice. There's definitely it's equally as rewarding. But I just find in disability I'm huge on person-centered care, and not even necessarily one-on-one, just a lot of person-centered care, and you have the opportunity to provide that in that environment.

Yeah, yeah, I think it's. It's a, it's a meaningful connection with disability. It's a bit harder in the mental health space because you have the you know the personal conflicts of of the others that you have to consider, so that connection's a lot harder. Yeah, yeah.

Yeah, I have thought about mental health and I just don't think. I think I'd risk my own mental health being. I mean, I've worked with mental health participants or residents, but not solely mental health. They've also had physical disabilities or disabilities. It's just a different environment.

Yeah, it is yeah, it's a different ball game. I've thought about going into AOD as well. Yeah, cause that's where some of my lived experience comes from. Yep, but yeah, I think maybe. Yeah, the youth mental health work is where I kind of want to be. Yeah. Help the youngsters of the next generation.

It would be cool. And there's also roles like Levi has, I say, a psych, but he's not. I don't think he's a psych. He's in the mental health part of the Royal Children's and he's wonderful, and he's moving on now back part of the Royal Children's and he's wonderful and he's moving on now back. I think he said he'd previously done it with youth mental health away from the hospital and he just he loves it yeah, and it's not, yeah, it's funny, it's such a wide.

Is he someone that just like comes and hangs out and talks?

yeah.

I'd say he'd be a peer support worker.

That's that's what I want to do yeah, I'd say so, I'd have to check, but I don't want to say live, what? Exactly what he is, but he's amazing and he actually we've had so much support offered to us in Levi's journey with a heap of different services and yeah very supportive.

With psych or cancelling and things like that. But Levi's father and I have both chatted when we've needed to with Levi's support person that we're talking about, and that's enough. He's just so great. Sometimes you don't want to, you don't want to do talk therapy or you don't want to have to answer certain questions. He's just there. It's really nice.

Yeah, yeah, it's what I like the most about about the peer support space and, as I told you before, I've just completed the certifications intentional peer support. But the foundation of IPS is connection, mutuality, moving toward and worldview. So it's about us meeting as equals. There's no power dynamic. You are you, I am me. Let's connect, let's share our stories, and I will intentionally share my lived experiences in a way that I believe will help you best. And yeah, I love that. I didn't even know about peer support until I started working in mental health support and someone I worked with had said I listened to your podcast, do you realize that? That's pretty much the foundation of being a peer worker? And I was like no, I don't know what that is. Tell me about it. And they're like, yeah, pretty much what you're doing. You are one Talking to people on the same level and just sharing. I'm like, fuck, yeah, I want to do that.

That's so cool yeah.

For sure.

I love that I feel in my job.

Yeah.

Yeah, yeah, yeah.

So I'm sure that everyone's a bit confused as to why we're talking about hospitals and things like that. Yes, so are you happy to talk a little bit about Levi and what is currently happening in Levi's life and your life?

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Yes, so back in August. Sorry, I'll go back to July. In July Levi had his first broken bone. And Levi's very active. He rides motorbikes, plays every sport you can imagine. He just tries everything and he's good at everything. But he's humble, which is great. He had his first broken bone broken arm in July and he had it put back into place. He had ketamine which was quite a scream. The video is hilarious.

It's so funny and that was really traumatic. I never thought anything else could beat that. But watching him with his eyes wide open, completely out of it, having his arm put back into place and while he was in a cast he developed a slight limp in one of his legs. And due to co-parenting, his father and I co-parent and we used to go day on, day off, two days on, and then we'd gone to week on off as Levi got older because that suited him best. So I'd say the limp was only a month, month and a half, but doing week or week off he would come home and it would take two days for me to realize he had a limp again and vice versa. So I had about the one and a half month mark.

We were out for dinner with my partner's family who hadn't seen Levi for a while, and one of his uncles actually said, as Levi walked through we were in like a food court, like a restaurant, and he walked out to the toilets and they'd seen the limp and said that's really bad, you probably should go see, get a referral to it. Actually they were suggesting physios and all those kinds of things. So prior to that we hadn't taken it too seriously because it was no pain, and we thought honestly sorry, levi, I love you that Levi had just become unfit, put on a bit of weight due to his arm and wasn't living his usual active lifestyle. We all had our own theories behind this. My partner said Levi just owns such good shoes but he buys them the wrong size because he just wants certain shoes. So he flops around in all these expensive shoes that don't fit him.

That was his theory and, yeah, thought nothing of it. Anyway, took that advice and thought I better go get a referral for a physio. So in August I was working both jobs that day and Levi's dad lives in sorry in the area that Levi's dad is, levi's doctor and Levi's school. So we decided we chose to meet up. Okay, so we go to the doctors and we explain Levi's situation and we're thinking we'll just get a referral for a physio or something basic. However, the GP diagnosed Levi from her chair with something called Oshgood-Schlatter disease, which apparently Definitely German yeah, they're so great in German.

Like no one at Royal Children's has heard of it. It's yeah, so it is German the thing. So originally we were walking into the GPL and saying to Levi mate, you need to start walking, you need to get out of this bad habit thinking it's nothing. Come on, just pick your feet up, walk normal To.

I want scans right now and a very heated discussion in the doctor's surgery, because how do you diagnose someone with something so random from your chair? You haven't even pulled his pants up and had a look. I pushed for scans. She was reluctant. She told us to go home and take Nurofen for a few months. Nurofen for a few months, for a few, so we can fuck every other organ up. So push for scans.

She ended up giving me the referrals for scans but telling me I had to wait five days to go get them, because five days was going to make a difference when it's been going on for a month and a half. Anyway, we got the scans and two days later I had a missed call. His dad had a missed call. His family home had a missed call. They'd called everyone that Levi had in his profile to get us in urgently. So again, I'm working a split shift and we think we're going to maybe find out there's a sprain or a strain or something else for her to tell us she could barely even speak, that they'd found a 4.5 centimeter lesion in Levi's leg and right leg. Thanks, levi.

Do you have issues with direction as well?

Same with.

George she's driving. I'll be like take a right. And she'll be like fuck.

My partner now just points, he doesn't even talk, he just points and we still keep talking. I'm chatting away and he's like, yeah, it's funny, it's great. Actually, I've learned a lot doing that, because I also things stick with me now, like even though your heart's on the left, it's always right, okay, and then your wedding ring obviously is on the same side as your heart.

Oh okay.

So there's all these cool little quirks and things that you learn by doing these ones. What?

was I saying.

I'm sorry. So obviously, with my background in healthcare and being around a lot of specialist appointments and things like that, dealing with a lot of situations, I pretty quickly picked up on what that or I thought that meant. So I calmly acted cool and told Levi and his dad that they could leave the room. I now needed to ask something personal about myself, which was not true. A woman closed the door. I just I almost collapsed and I think I just said is it what I think it is? And she said yeah, I know what you do for work. I, yes. If yeah, it could be cancer. Do you want to go get more scans somewhere else, or you can head straight to the Royal Children's.

Obviously, we decided we're going straight to the Children's. We stopped past Levi's grandparents' house where his dad lives. They were in the car in front of me and I called my partner and just said oh my God, we think Levi has cancer. And I'm sure he probably thought that I was hallucinating or absolutely out of my mind. Where did that come from? Levi and Jervin still didn't know at this point. So we got to the house and I started. Levi was outside or doing something and I started to tell his dad and grandparents and as I was telling them I was reading the initial scan that actually said and I think this is when it hit me most likely diagnosis osteosarcoma from the initial scan.

Yeah, and what was your frame of mind during that, when it hit you?

Well, it didn't really hit me in that moment because I just spent the last week Googling Oshgood's letter and I'm looking at these pictures and it was identical to what the doctor had tried to diagnose him with. However, on the report, it had been looked at by three different people and you don't just say those words if you're not really sure about it. And I just started in that moment. It didn't really hit me. The gravity of what was happening was more. It started to play things back in my mind, like when he had the ultrasound done and I we walked out. This was a few days before and I said to him she was really rude, she shouldn't be in healthcare, because he was saying, oh, can you see my Oshkosh ladder? And she was like, really rude, no, that's not where Oshkosh ladder is. But now I'm realising they can't tell you what they see. But this woman would have been thinking, oh my God, this kid has cancer.

This is not knowing what we're about to find out.

She was probably in shock Like how do you? So we went straight to the Royal Children's and I was blown away by how fast everything moved. I also had this weird guilt, like I felt like I needed to tell my family, tell everyone and update everyone, because people in my family get shitty if they don't know things. But I didn't even have time to process what was going on. It moved so fast. We're in emergency. Oh, we went through emergency actually and we were sitting in the little triage children's they have multiple triage rooms and I walked in and I could barely breathe and I had the piece of paper that said osteosarcoma and I looked nuts. But I'm saying to her we're here for Osh Goodschlatter, because I didn't want to lie to him but I didn't want to scare him before we knew anything. And I actually later on saw that nurse months later and she said I thought you just made that word up and that was really cool. I've never heard that?

No, it's, I'll teach you what it is. I've done a lot of research. So I walked out of the room and spoke to the first doctor in there and said to her something like do you think it is? And she said well, it's not good, whatever it is. And yes, most likely. And I asked for her help to tell, to explain to Levi, because I didn't want to leave him in the dark.

And how do you even begin to tell your son that your life's never going to be the same after this one?

Yeah. So we went in and we just she said, well, we'll tell him the truth, we don't know, but there's something that's not right with your leg. So we showed she was really great I don't remember her name and she got the laptop up and we were showing him and she said, look, she didn't mention the word cancer, but there's something really not right with your leg. But we're going to figure it out and we'll work on it. And then from there, I think the next day or the next few days, he had something like 20 different scans.

I saw machines that I could never even imagine it's crazy. Then on could never even imagine it's crazy. Then on to a biopsy and then a week later was when it really yeah, so they have to with bone cancer. I don't know a lot about biopsies, but they have to actually melt down the bone. So it takes a week. And then, pretty much exactly a week later, they called us in and I actually went into shock for about two months from the moment that we went into that room. So I'm starting to process a lot now. But I relied a lot on my partner who was there. It was myself, levi's dad and my partner and Levi in the room initially and he remembers all of it. I don't.

You just haze, Don't. Yeah. Yeah, the protective layer yeah, yeah. I know the exact feeling, but from a different perspective. It was when mum told me she had cancer.

Yeah, and.

I remember that that haze stayed for a long time.

You can't explain it unless you felt it.

Yeah.

It's crazy.

Yeah, it's like your brain, just it's not that it shuts down. You're still present, but you're not in the room.

Well, it's funny. I'm so sorry to hear about your mum, that's. Yeah, I know how you feel. Yeah, but it's funny and this sounds crazy, but it's for the first time ever. It feels like you can feel every live wire in your brain and they have literally shut down to save you from like to keep you alive. Yeah, because you just couldn't cope with that. Yeah, it's beyond what you can imagine feeling. Yeah, so you just can't feel.

Exactly.

But you don't control.

It feel Exactly, but you don't control it, it just it's. It's for the first time it's completely out of your control. Yeah, it's kind of like starting windows in safe mode. We'll give you just enough to be able to control your body.

Yes, and that's about it, but thank you, because I would not have coped. So then we went, I went home and we went sorry, we told everyone and then we went to Levi's dad's house because it was his week and I wasn't. I was in shock. He stayed there the night and I my brother followed me home because he was so worried. I got home and I actually collapsed in the door and had a huge panic attack. Yeah, From then we went into intense chemotherapy.

Levi had three different types of drugs for chemotherapy and it worked in five week cycles. So week one he would have the really horrible one, which was cisplatin, and doxorubicin, which was a heart protectant, and it made him violently ill, really, really sick. So it only ran. I think that one was only 15 minutes, but for hours afterwards. Actually, another patient explained it really well it was like impending doom, where you'd swallowed the whole ocean and you had to get it up. So Levi was so sick until he'd vomit nothing up and then with that came severe muscle cramps. It was lethargic. So many symptoms, nausea, extreme nausea.

And then week two and three he would have methotrexate. But leading into the methotrexate was intense hydration and another a kidney protectant. So week three and four were. Week three was our red zone, really, where I would have no immunity and we would end up back in hospital with a fever, with his body fighting itself doing all that. And then week five we ideally would have been at home, but we never made it. Six days at home, this continued for well, until last thursday. So how long's that been, god august what do we fly?

yeah, 10, nine, nine months nine months yeah so yeah numbers are not no, they're not. You take every day as it comes, but it's like I have no, no idea of time um so nine months?

what so? Four rounds of chemo, was that it?

Nine months, every five, no. So how many cycles?

Four, yeah, and then I think like 18 cycles.

So roughly each month you'd have the cycle.

Okay, so yeah.

Yeah, it gets confusing because some doctors talk about it as cycles, some talk about it as um I don't know the wording but, it's still very confusing.

Yeah, um, and in between that we'd have um. So each start of each cycle or medication leave, I had to have a finger prick that would test his bloods to see if he was neutropenic, which is when they need platelets or blood transfusion, things like that, because it obviously kills everything off. It kills the bad, but it also kills all the good. So he had multiple bags of blood platelets nasal gastric tube at one point, which was horrific. My partner actually was there for that and his own father had had one because he'd also had cancer and was there for that and his his own father had had one because he'd also had cancer.

Um, and I feel so awful that he had to be the one to help with that, but I just couldn't. We had to actually pin levi down, but not not because he was screaming and didn't want it, but because it's a natural reaction, like reaction to lash out or to yeah, so, um, that was really, really horrible. Um, in saying that, the nurses are all amazing. The nurses and doctors, it's been words, absolutely no words. I'm so grateful.

And sorry, the chemo was all. We weren't trying to kill the cancer, we were trying to stop. They knew that they were never going to kill it because it's so rare and aggressive Under 1% of people that have it. I should also say, actually, when we were diagnosed, obviously you, you start thinking what did I do wrong? What was our lifestyle? What was it? Even when you know women are born with all their eggs. Was it me? Was it, what is it? And with osteosarcoma and in levi's case, only presents during puberty, in the long bones, long growing bones, when the cells grow out of control. So we've done nothing wrong that could contribute to this like a cell mutation kind of thing.

Yeah, yeah. Technically an X-Man.

Yeah.

Technically Fuck him. So they weren't trying to kill the cancer. They knew we had to do surgery, they were just trying to. It was going to keep going and it grew very rapidly. It almost tripled in size, I think, by the time we had surgery in November. But it was the perfect. It's the parameters that they wanted. They knew it was never going to be the solution.

So whilst all this is happening, we have meetings with Levi's surgeon around surgery and there was two options and we obviously let Levi make that choice. He was the centre of all of his own care, which was fantastic, and he learned so much. There was two options. One was a megaprosthesis, which was a rebuild of the natural leg, where they would remove certain bones and replace them with borrowed bones from the other leg or metal. However, levi would never ride a motorbike again and would never play the sports that he played because he would be at such high risk of infection with any knock bump. And the other option was a rotationplasty amputation, where they would amputate above the knee. They actually removed above his ankle and then cut above the knee, so they removed this whole portion of the leg and put the foot on backwards to work as a new knee, and that's obviously the option that Levi chose. So that's why they put the foot on backwards to work as a new knee, and that's obviously the option that Levi chose.

Yeah, so that's why they put the, because I was going to ask. That's why they put the foot on backwards, to have the heel act as a knee.

Yep. So Levi will be able to drive a car, ride a motorbike, because he actually will have sensation and feeling and be able to flex. Once he gets his official legs which will obviously change with each year, but he's in the moment in a therapy leg he will have learned to completely flick the end of his leg.

Awesome. Yeah, I mean not awesome. But best case scenario I'm sure Levi would still prefer to have his leg, but instead of talking about Levi, just you and I let's get him on, because he is here and he's wanting to share yes, he's very eagerly there, so we'll have a quick break. I'll set up another chair for you. All right, so now we have levi.

Thanks so much for coming on, levi thanks for having me I'm more than welcome, mate, so I want to know a little bit about yourself, the person you are, the things you have learned as a 13 year old, and we'll go from there. We'll talk a little bit more about your cancer story and your amputation, but, yeah, for now I just want to hear about you, mate.

What makes you happy. Before this, I was a very sporty guy. I loved every sport you can imagine. When I was young, I got into the habit of riding motorbikes, so I was very, very big on that. I love cars.

Yeah, that's really yeah, so just very active. Yeah, and you also love video games, love video games.

What's your favorite?

I'm gonna have to say probably, probably black ops 6 yeah, nice, I haven't played any Call of Duties for years. I feel like Black Ops 2 was the last one I bought.

That was probably. That's probably my second favourite. I love Black Ops 2 because it's just like.

Modern War. I haven't done it yet Love School.

I like School, it's not. It wasn't that that was a problem War. When I was, you know, five, we had this big issue because, like you know, people were mostly the girls weren't being so fair to the boys. Like we got bullied, we got, you know, like, put down and all stuff like that and bullied by the girls yeah, and we couldn't do anything about it because as soon as like not saying that I'm a bully, but as soon as we said something back, they would go tell on us and we would get in trouble.

So it was kind of you know I got bullied all through school and my first ever proper bully was a girl and I still remember her. Her name was brooke and she looked like a female version of nelson from the simpsons. So you your mom has talked about the diagnosis. Yep, can you talk me through what your experience was, what your personal experience and feelings were when you found out, and how did that look?

Wow, okay, right into it.

Right into it. It wasn't like I cried, I'm going to say it and I'm not embarrassed. But a week after, or like two, three weeks after, I discovered that, like, even that, I've got the worst of the well, not the worst of the worst, but I've got a pretty bad like situation that I'm in, I just tried my best to stay positive. I tried my best to just, you know, keep pushing and no matter how hard it got, no matter how like depressing it was for everybody, how much it crushed their souls, I just tried my best to just push through it and I tried to bring my family along with it. So I tried to keep my positive to help my family through it too Okay.

I'm going to try not to cry.

I saw you getting a little bit, yeah, yeah.

Because cancer is a very personal thing for me yeah as you heard just before, my mum was diagnosed with breast cancer when I was 12. Yeah, and she lasted 16 years. She was in remission three times and yeah, that's 16 extra years because when she was first diagnosed they didn't think she had that long. But the positive attitude and the mindset of like giving up is not an option. That's what got her through mate. That's what gets everyone through cancer.

I've heard I've also discovered if you become negative, certain stuff will take advantage of that. If you don't stay positive, it'll get worse and worse and worse. But even though that it's bad, it's kind of going like up and down, up and down. Obviously you have to have your sad days, like you can't just live forever being happy. Gotta have, you know, your bad days, your good days, your okay days, your normal days. But, yeah, trying to just push through and don't even think about just live a life like, even though that you're in hospital like half of the month, it's just more. Like the cancer is just not going to disappear. You snap your fingers and it's gone. So just crying about it is just going to make it last even longer. But just trying to like, keep like your personality and not let it just destroy you is just better, better way to go you have a incredible head on your shoulders, mate.

How is the emotional intelligence? That's crazy. You've grown up. You've grown up with your mom, who I already already know has a good head on her shoulders and a good understanding of emotions and regulation and all of that. But to hear that, hear the way you speak and the way you understand your own mind and the fact that you know you just live a better life when you are being positive, is truly magical.

Yeah, it definitely helps.

It's better than just being negative and saying this is so bad yeah so, throughout the entire uh, from when you were diagnosed to now, what would you say the biggest hurdles and the biggest emotional hits were, and how did you pull through those?

Well, definitely the start, the very start when I found out I had cancer. That hit like hurt and then probably a second time it hit, probably chemo Like after I like. All the medication I was taking just destroyed my person, like my mental health.

Your physical health as well. I don't know what the chemo is like, but I've witnessed my mum having it. Obviously it's very just that it just turns you so frail, doesn't it? You can only have the energy to get to the toilet and back to bed.

Not even that. I couldn't even like. For one week I was just bedridden, like I was just in my bed, sleeping, vomiting, trying like I couldn't even go. I couldn't even walk to the toilet. I like, before I even take three steps, I would vomit like I just had to be in bed and I just after I got out of it once I was, but I looked like a zombie. I was just like. When mum tried to talk to me, I just ignored her. It was like I'd say I messed up. Like my body is pretty. It was pretty bad during that stage.

Yeah, and so you just found out last week that no more yeah, so. So you'd be pretty chuffed with that Like yeah, yeah, yeah. Awesome, I'm so glad to hear it. I want to talk a little bit about the surgery and how you felt when those options were presented to you and why you decided to go with the choice that you chose well, as mum also discussed, if I got the other option I wouldn't be able to do all my daily activities that I would be doing before cancer.

But also like the risk of infection like that just means I'm going to be in hospital for another like month just to like solve out my leg and then, as soon as I get out like I would be straight back in again.

You could just knock it on the door and go straight back in, hey.

Yeah.

Yeah, so do you feel like it was a pretty straightforward decision?

to not choose that. Well, I kind of jumped between the two Like. First I was the mega prosthesis, but then, like after they said it's kind of like, don't, like, you can go for that choice, but you won't be able to do as much things you were doing, I kind of went into the like, like the other choice, and yeah, that's what I ended up getting, because I'd rather lose a leg than have a leg that just keeps getting infected.

Yeah, yeah, and then you run the risk of losing it later down the track.

That's exactly what I was about to say.

Yeah, and the. So after the amputation happened, the first time that you were able to fully see, you know, your new, your new leg, so to speak, how did you, how did you feel? Were you okay?

Wait.

So, like the first, first time, the first first time that it was unveiled and you've got a backwards foot as a leg.

Well, when I first first woke up and I realized I had a backward leg, I didn't even care. I was just so tired that I just wanted to. You know just, I didn't want anybody to bother me. You just wanted to sleep, I just wanted to sleep.

It felt like your leg was still there.

No, I didn't feel like my leg was there, it just felt very heavy. I was just like I couldn't turn over and it hurt all in my hip. Remember I'd just got stitches in my leg, so like they didn't allow me to do. Honestly, I'm just going to say it sucked.

It would have sucked.

Yeah, for sure.

Yeah, 100%.

But then, like later, later down the track, about two, three weeks after, like I was all better and I could, like I was back to kind of normal, it started to feel better.

I still couldn't roll over, I could roll onto my side, but it hurt like hell in my hip, like I just it's just all the muscles and when they put this in, they had to put a big metal like rod in my leg with, like, I think, stick six screws in it, so that I think that was hurting as well, just because they had to like they didn't just do stitches there, they also put stitches all like in, like the right, left side of my hip. Wait, yeah, right side of my hip, yeah, yeah.

Yeah, pardon.

Sorry and all the, I have two things to say. Yeah, we actually played a game. We wanted to play a game guessing any stitches Levi had. And we said to the doctor, roughly, can you tell us? And they said millions, because every artery, every muscle we never would have guessed it.

And the other thing I wanted to say was it was really interesting in recovery. So Levi's surgery was 15 hours and we all got a hotel room at the hospital to support, to be around each other, and we went into recovery and Levi's dad and I obviously it hit me at that point and he was so sick and he was getting really agitated, trying to move, and I said to Joven, levi's dad, I can't tell him he's got no leg. There's no way he remembers Because he went into surgery smiling Love, you See you on the other side, like so positive, let's just get rid of this bastard. Like it was crazy. So we bickered a little bit because I said, well, he just doesn't want to cry in front of you, but we have to tell him about his leg. Anyway, we ripped the band.

Oh, oh.

Well, he was getting agitated, trying to move, and I said, well, we have to tell him. So we worked up this courage to say I said, honey, do you remember what's happened to you? Thinking we're going to have to explain it. And he was like, yes, I know my leg's gone, I just really need to move it. And so then we went on to trying to explain that he couldn't move. But yeah, that was huge, because you're thinking how is someone so okay with this? It's crazy.

Yeah, and then saying that I did play four sports in total. What did you play? Soccer, basketball, footy, and I tried one day, I played rugby for a little bit, yeah, so Plus motorbikes and such an active person, yeah. And I also did a lot of like walk, like running at school and yeah.

Just typical 13 year old boy stuff.

Yeah, yeah.

Getting all of all of the extra energy out, yes, so let's talk about now. Now that you're out of chemo, you heal your legs probably pretty healed yeah, out of chemo. You heal your legs probably pretty healed from the surgery.

Well before, like when we asked my doctor that comes to see me, am I allowed to swim and that was about a month ago, two months ago she said absolutely not. Not in rivers, not in like that kind of like fresh, dirty water. You can only swim in the ocean and not like on a non I don't know if you know this a non-bay beach. It's like a I don't even know what it is, to be honest, so it would be like a beach.

That's not not kind of yeah, just just go straight to the ocean, kind of thing, yeah, and it can't be a.

You can't swim in it before after rain because of the alkali levels. So literally, I had to swim on a perfect day and plus, plus, like it's not like rapid, like it's like waves that are as tall as me, coming at me.

Just getting dumped on.

Yeah, yeah.

Yeah.

Basically, but now I'm allowed it. Well, actually I went kayak the other the other month or something.

You bought a kayak.

I got a kayak a fishing kayak because I love fishing, and I went on that on the first time I don't even know, like a month ago, yeah, and it was just the best thing, because I love fishing and it.

What's the biggest fish you've ever caught?

Probably like on a boat or a pier, like all together all together probably. We were on a pier and I caught a about to my to my toe to like my like kind of that kind of section, a big banjo shark.

So yeah, a bit over a meter, we'll go a bit over a meter.

yeah, yeah, sick A bit over a metre. Yeah, yeah, yeah, sick yeah.

I've never been fishing. Oh sorry, I've been fishing. Once, when I was a kid, I went fishing at the Hume Trout Farm, but it's not really fishing, just like literally just pay to win.

You know, the funny thing is I've never been to a trout farm, so you've never been fishing, I've never been to a trout farm.

So you've never been fishing, I've never been to a trout farm.

You might have to take me fishing one day, Levi.

I'm taking you fishing. Let's do it, I'm learning. Let's do it, I'm down with it. Yeah, so now that you are in a place where you've had to give up a lot of the things that you love football, and all of the active stuff, what?

are you hoping to accomplish? Accomplish in the future? Where are your interests leaning?

towards now, my interest leaning towards now, yeah, like what do you want to do?

well, probably just the same kind of stuff. Maybe change up the sport a little bit. Maybe I can't play footy anymore, soccer, I could possibly get into soccer, but yeah, just basically keeping it the same. Like I'll probably get back into basketball at once, like better, and definitely getting back into motorbike riding, because I cannot live without that, and probably just keep my life a little bit just more calm and not as chaotic as it was. Yeah, not be, not be like crazy at school, like not running around every day.

You're just excited to get back to some sort of normalcy.

Yeah, I just want to do something, because, other than hospital and all the other stuff, it's nothing. All I do is sit at home and play my game or watch TV or sleep. It's not fun. No, it wouldn't be, it's not fun.

No, it wouldn't be. It's not fun, it wouldn't be at all.

No, are you a?

creative type of person.

I did like, as in a drawing kind of way or Any type of creation.

Do you like making music? Do you like writing poems?

I like to make like homemade, like, probably like, for example, I love fishing, so homemade crab nets, fish traps. I love singing too. Love singing. I'm a pretty good singer.

Yeah.

I love playing piano, I love singing. I love piano keyboard. I'm learning guitar.

Yeah, okay, so multifaceted musician, we can add to the bloody resume. And should we discuss journaling, because I'm a big advocate for journaling and we've got and so we discussed journaling, because I'm a big advocate for journaling and we go out keeping a Like a digital diary.

Yeah, and I had not realized. Levi's always danced, sung, done all of that and he that's. How did you cope? What were you doing on your iPad.

I was making music. I was making music from my iPad and I yeah, that's how it actually kept me sane what sort of music were you playing making? I was singing, making a song with beats and everything, and so you're kind of like dj type of stuff yeah, yeah yeah, so you like djing yeah, I've gotten a djing.

I really like it. I just want to, because me and dad have this thing where we listen to techno, like all that, like that kind of music, and I just want him to. I want to make it for myself because you know how there's limited kind of like techno where there's just like so many that you can pick from. But I want to make my own music so I can, I can make it my way. So, like I want to make it this way, I might not want to make techno, I want to make something else for like just calm and mess around.

I just want to mess around, make music, have fun. Yeah, yeah, 100% Very creative. Do you have DJ decks?

I did, but then we had to, unfortunately get rid of it because it didn't it was. We had to return it because it one wasn't working.

Faulty.

Faulty yeah.

I haven't gotten any. No, well, hopefully you can get some more soon. I'd love to hear some music.

Yeah.

Yeah, I'll tell you a little story about all of my podcast gear. So when I first started out, I started the podcast with a tiny little mixer just a two channel mixer Wow, that's impressive.

A crappy microphone and like USB headphones. That's what I started out with and then, about a year into about 12 months into it, I had started a conversation with a bloke who works at DJ City. Oh yeah, yeah, like the online mega store, yeah, dj equipment, yep, audio visual stuff. I told him about my podcast and he was so supportive of the podcast that dj city gifted me all of all of this stuff wow so the microphone, my headphones, the roadcast is this also with dj city?

no, that one's my old mic. I think it's a Shure PG58.

I have this from my karaoke machine, that's just a shoddy old microphone. Yeah.

And yeah, they gifted all of that to me, so how cool is that.

That's pretty Like. Even Matt is just like so.

So, levi, the reason that I wanted to tell you this story is because your mum told me that you enjoy doing DJ stuff and that you didn't have any equipment. I reached out to my guy at DJ City and the headphones that you're wearing are yours to keep, so you can take them home with you.

No way Is there, don't All right, we've got them no.

But I also need you to do me a quick favour.

Yeah.

And I need you to pull that blanket off. Mate, you take your time. You can take your headphones off no, holy fuck right.

So, levi, courtesy of dj city and pioneer, they, after hearing about your story and what an incredibly brave and awesome kid you are sorry, I, I shouldn't say kid they have gifted you a brand new DJ setup, mate. So you've got a Pioneer DJ FLX 4 decks. You've got Fusion Series monitors. You've got your Behringer headphones. I couldn't get you a microphone, I'm sorry, but you've got everything there, mate, that you need. So, mate, that's all yours. That's all yours. You get to take that home.

Thank you, you're all wrong, chloes.

That's so speechless.

Wow, I thought you'd scream.

I thought I'd cry everywhere. I think, yeah, yeah.

I think he needs a moment.

So yeah, mate, look, we've been wanting to get you here, so I could give it to you, man, I'll take a hug. I love a hug. If you want a hug I'm so excited to hear what you can come up with so for the podcast, because I've just started releasing season three and my good friend and guest that I had last season, his name's Ben, he made an entirely new theme song for me.

Yep.

So I want to give you your first project as a DJ to make an outro song for the podcast.

I want to scream Definitely so much like it's. I'm like a volcano. I just want to like, oh God, Wow.

You reckon you could do that for me.

Yeah. That would be an absolute honour mate, I'd do it, I'm all doing it in a heartbeat.

Sweet. We'll tee that up later.

Are you okay? I'm fine, you just happy. Once we get into the car, I don't want to scream near because of the microphone and I don't want to hurt these people's ears because I've got a pretty loud, pretty loud girly scream. I don't want to do it. But once we get into the car, yeah, thanks.

Thanks so much, DJ City, and thank you so much Pioneer. Yeah, look, I just you know you have been through a million times more than any 13-year-old should have had to go through, and I know that the entire journey can beat you down and change the way in which you view the world, and it can be quite a negative and saddening experience. So I really just wanted to show you that good exists in the world and I'm rooting for you, mate.

Thanks, I'm going to be. I'm so honoured to make the intro.

Outro. Yeah, Wait, outro Outro. Yeah, I've got the intro. I'm making the okay You'll make the the intro uh like yeah wait, outro.

Yeah, I've got the intro. I'm making the okay yeah yeah, that's amazing.

You're amazing. Thank you for having us more than welcome.

It absolutely is my pleasure and it was. It was obviously the reason why we needed to do it in person but to all people out there, you better listen to the outro.

This is going to be a banger If you've never listened to the outro yeah, you've got to go spread this podcast. Yeah, and listen to the outro Please. It would be an honour to me.

Yeah, I love a bit of a plug for my own podcast. I appreciate that so much. All right, so I reckon we're going to wrap it up so you can like have a little play around and whatnot with your new toys. We can unbox them if you want.

I'm entirely up to you. Yeah, 100%. Thank you again, levi and Chantel, for joining me today and thank you for sharing your journey. I think it'll help a lot of people out there that need a bit of positivity and inspiration. Mate, you are 150% that you are an inspiration, and meeting you is one of the highlights, if not the biggest highlight, of having this podcast.

And again, just to say again thanks for having me. It's a pleasure to be on this podcast. Thank you so much for the gifts and thank you for the people for watching this.

You're more than welcome mate. All right, Leave yous to it. Thank you, thank you.

Thank you.