Nic Russell Lost Her Daughter, Survived Cancer, Has Parkinson’s and Needed a New Heart. This Is Her Story.

00:00:00
Speaker 1: The last thing she said was mommy. She sat up and said mommy and then she collapsed. And Becky said for all intents and purposes, Nick, she thought it was you. I was like, what? But it wasn't me. So I live with that.
00:00:12
Speaker 2: Hello, I'm Kate Langbrook, host of No Filter. Today's guest isn't someone whose name you'll probably know and you won't have seen her on television, but I think her story will stay with you for a long time. Nick Russell grew up in Northern Ireland during the Troubles and arrived in New Zealand in her 20s with a bike in a box. Then in 2005, her two-year-old daughter, Kenzie, was diagnosed with a rare childhood cancer. And months later, Nick was diagnosed with breast cancer herself. Kenzie died just after Christmas that year. She was three. In the years since, Nick has started a children's grief charity in Kenzie's name, been diagnosed with Parkinson's disease and had a heart transplant. She's written about all of it in her memoir, Bollocks. We talk about fighting to get doctors to listen, the comedian she says saved her life, what grieving people actually need from the rest of us, And the dive she finally took with her son after her transplant. This is the extraordinary Nick Russell. Nick Russell, welcome to No Filter.
00:01:33
Speaker 1: Kit, thank you so much for having me on today.
00:01:36
Speaker 2: I have spent time in your company via the incredible book you have written about your extraordinary life called In True Irish Manner, Bollocks! Bollocks, when life isn't all it's cracked up to be.
00:01:55
Speaker 1: I think that's the best way to sum it up, actually.
00:01:59
Speaker 2: Crack, of course, is C-R-A-I-C-C.
00:02:02
Speaker 1: Yes.
00:02:03
Speaker 2: Which is like good times, good banter.
00:02:07
Speaker 1: Yeah, it's a bit of banter. It really boils down to the fun. You know what I mean? To have a bit of crack is to have the fun with friends. So, yeah, whenever it's not all it's cracked up to be can sometimes be a little bit more challenging.
00:02:21
Speaker 2: And that's the bollocks.
00:02:22
Speaker 1: That's the bollocks.
00:02:24
Speaker 2: And mate, you have had bollocks.
00:02:28
Speaker 1: Yes, I think it's, yeah, you know, when you sort of meet someone and they say so, you know, sum up your life and then you really don't want to really have this conversation now. It's like, because you can see their face has changed straight away and you're going, it's okay, it's okay.
00:02:46
Speaker 2: You know, reading your book, which is also very beautifully written, which I would expect from the Irish, the land of the poets.
00:02:55
Speaker 1: Yeah.
00:02:56
Speaker 2: And the people who I think can encompass pain and beauty and hold them both at the same time.
00:03:05
Speaker 1: Yeah, and I think the Irish do that really well. I think when you grow up in challenging circumstances, you– learn to express and process what's going on around your life through the written word, through song, through comedy, you know, because it helps you cope with the hard times really and it's something that happens when you grow up in a challenging society really.
00:03:29
Speaker 2: And when you say challenging society, you grew up in Northern Ireland and it was in the tail end of the Troubles?
00:03:36
Speaker 1: Yes. Yeah, and I think that's a polite description of it, isn't it? It's troubles.
00:03:39
Speaker 2: The troubles.
00:03:41
Speaker 1: Yes, it's like somebody's going off and being a bit naughty. You know, you're a bit in trouble, but it was a bit more, yeah, it was a polarizing situation growing up in the 70s and 80s and early 90s in Ireland. Fortunately for me, we grew up in a beautiful part of the country, which is at the foot of the Moorne Mountains, where C.S. Lewis based his Narnia on because it's such a beautiful part of the country.
00:04:04
Speaker 2: Yeah.
00:04:05
Speaker 1: So it's a stunning part of the world, but contradiction in terms. You can have this real beauty in a country and yet this dark element to it, you know, which was the sectarianism that went on in that society.
00:04:18
Speaker 2: And you were always interesting, even back then, because things, as you said, were so binary. You know, you were Protestant or you were Catholic and ne'er the twain shall meet. But when you were 16, you fell head over heels for a Catholic boy.
00:04:35
Speaker 1: I did. I was totally smitten. And we were kids, you know. And even at that, you know, for us living in the country, we used to get stopped by the security forces, you know, whenever we were out driving and told to get out of the car. And the car searched as if we were having contraband and explosives or something. And the car was just ridiculous. It was more harassment because it was the Catholic Protestant thing. And and he used to get the car stoned as well. And, you know, things, you know, derogatory statements were said to both of us. And it's, um, needless to say, as kids, that relationship didn't last the test of time. We were young kids. And to think even in a society that you would harass children, really, you know, young adults on the cusp of their, you know, learning about love and relationships and all of that. And we felt a bit like Romeo and Juliet. And, um, but I was devastated. I was so heartbroken when that relationship finished. And I think that, um, Yeah, set the scene for me leaving really Ireland because I wanted to be in a society that wasn't so sectarianism, better divided by religion. And I thought there's other cultures in the world and there's more to see. The world is your oyster, as you say, when you're young. So that was a stepping stone.
00:05:44
Speaker 2: And you found yourself arriving in New Zealand with a bike in a box because you were always an outdoorsy person.
00:05:53
Speaker 1: Yeah.
00:05:54
Speaker 2: You found solace in nature and adventure.
00:05:57
Speaker 1: I did. And it was, like I said, where I grew up was a beautiful part of the world. And, you know, I took that, you know, with me. And I lived in London for a few years, you know, when I first left Ireland. But after three or four years in London and being in a concrete jungle, I wanted the outdoors again. And New Zealand was the outdoor capital of the world. My plans was New Zealand and then to come to the wonderful Australia. I got to New Zealand, my brother ended up in Australia. But I loved it down here. I came here with my bike and my box and I thought I would cycle around New Zealand and see the size of their hills and went stuff that for a game of soldiers. I need to think of something else because the hills over here are massive compared to Ireland's foothills. The mountains I was cycling up were hills really in comparison to New Zealand's rather steep, rugged terrain. So I ended up becoming a scuba diving instructor and teaching scuba diving And nannying. And it was, I got addicted on that.
00:06:56
Speaker 2: And you rescued, in one of your scuba exercises, you rescued a guy called Sam.
00:07:04
Speaker 1: Yes, I did. And he was a complete, in my 23-year-old self, he was a complete Adonis. He was quite a bit older than me. And he was an outdoors instructor. It was all those things that, you know, a young 20-something, you know, from Ireland would think, oh, my goodness, this is, This is an exotic creature. It was a whirlwind romance. I fell head over heels. And we ended up getting married and then living on a little island in the Harareki Gulf here in New Zealand called Motetapu. So there was about 20 residents on it. No shops or mod cons or anything like that. So I was out there with two little children at that point, which was my little boy.
00:07:47
Speaker 2: So you had your son, Connor. And your daughter Mackenzie, Kenzie, your poppet.
00:07:53
Speaker 1: Yes.
00:07:54
Speaker 2: And what a, well, I think isolation will point out any flaws that there are in a relationship. And particularly when you said, as you were juggling two little kids and a very remote, barren life.
00:08:16
Speaker 1: Yeah.
00:08:16
Speaker 2: And the cracks started to appear in your relationship with Sam.
00:08:20
Speaker 1: They did. I mean, we were, I think, you know, there was 13 years, 11 years between us. And I think when you live out and it's just two of you, when the rose colored glasses come off after those first couple of years of marriage and when you've got little children. And then you realize, whoops-a-daisy, we're a bit like oil and water. We did not mix at all. So the breakdown in the marriage started then, really. And, you know, I suppose it was quite text, but really others could see it coming. But, you know, we stuck it out for a while. The children were little and it was a lovely lifestyle as such because we had the paddocks and the beaches and all that wonderful stuff for the children. And I'd gone back to study again, you know, because I thought if I'm out of the workforce for a couple of years, if I upskill while I'm here, you know, being productive. And I also realised the marriage wasn't working. So I thought if it falls to pieces, you know, at least I've got a skill set that I can provide for the children.
00:09:16
Speaker 2: And back in the UK, you'd worked as a play therapist in a hospital to help children.
00:09:25
Speaker 1: Yeah, so we're just a hospital play specialist. So what that means is whenever children come into the hospital, You're explaining to them and using play modalities to help them understand the process that they're going through, the treatments and stuff, and to help reassure them about what's going on and break down any fears and anxieties that they have. Ironically, that was a skill that I would end up needing with my own children.
00:09:47
Speaker 2: Who knew that you would need to employ your skills for your own little one, Kenzie, who she was two when she started having these terrible attacks of pain. It started in the night.
00:10:05
Speaker 1: It did start in the night, Kate. It was, you know, she started to scream out in acute pain. And parents will recognize that, you know, whenever your children are unwell or they're in pain, it's a different cry. It's different from a temper tantrum, right? But then we thought it was night terrors to start with. But then Kenzie was a very physical child. She walked at nine months. She would climb anything. So you had to have eyes in the back of your head. You know, she'd be on top of a wardrobe in a second. And into the cupboards with the biscuits and the flour. But then she started to stumble over and fall down and just scream out in pain. It would last for about 10 minutes. And I was getting really concerned. So we went off the island immediately. about four times we came off the island. And that was whenever we had to come off the island, we had to have a 45 minute travel across one island, another 45 minute across the second one to get to a ferry to get into town, which was another half hour. So it was a big effort to get in. But each time I seen the GP, it was, oh, it's just a behavioral issue. It's probably a toilet training issue. Go home. And in one episode, she had an attack in the surgery and he still wouldn't come out to see us. And it was a holiday weekend. The next, so I mean, it was just, and I think parents will have their own stories. They will have experienced this of taking their children and not being listened to. I think it happens quite a lot. But I think when you start appearing to a medical facility more than once, more than twice, and you're constantly coming back, doctors should begin to sort of take note. There's something more going on with this child if they're constantly appearing in front of us. But it took her then to the main children's hospital here. And again, we got sent home, you know, because again, she seemed fine because these attacks were intermittent. But I kept going back and they eventually seen an attack happen and they realized it wasn't. Right.
00:12:00
Speaker 2: So this is when you had realized with your mother's instinct and your observation of your daughter who you spent every waking hour with, that she was prone to have these attacks after she had eaten. So you went and got some chips from the vending machine. And she had something to eat.
00:12:23
Speaker 1: And she had an attack.
00:12:25
Speaker 2: Right. And then things escalated.
00:12:27
Speaker 1: Things escalated. And we were in the hospital for about three weeks. And over that three-week period, she continued to deteriorate with her mobility. So, you know, as well as the pain attacks, she started to stumble over and fall and then After three weeks, she was completely paralyzed from the chest down. And over that period of time, they had done, you know, scans and blood tests and still they were scratching their heads going, it must be a weird virus because they couldn't quite get to the bottom of it. But at no point had they done a full body MRI. We'd done sort of half body CTs. And on this given day, on December, After three weeks, it was a Sunday, I remember it clearly, and they had scheduled an MRI, but it got cancelled because they need an anaesthetist to be on to do an MRI on a small child. And they would have to call one in, so it got cancelled. But at that point, as a mother, you can imagine, as all mothers would, we lost the plot at that point and lost our temper. And fortunately for me, there was a doctor that I had worked with at another hospital in New Zealand, He was a registrar and he organized it and he stood up to the consultant and we got it organized. And the MRI came back that she had a paraspinal tumor at the top of her spine, which was explaining everything because it was, of course, it was a spinal cord compression. So the pain, the mobility issues was all textbook. And so at that point, you know, our lives changed in an instant. You know, you're facing a cancer diagnosis. And so emergency surgery was scheduled for the next day. And it was about a four to five hour surgery. The neurosurgeon said to us that day, you know, and I thought, you know, you interpret things differently when you're in a heightened state of anxiety and fear and anger and all those emotions coming at you. And he looked at us and he said, and he lifted Kenzie's little foot and he, and he dropped it down and he said, you know, this isn't going to change the damage that's been done. I remember him saying it. And in that moment, the, It was like, are you angry at me because I didn't bring her in earlier? You know what I mean? You don't know how to interpret it, but it wasn't. He was, because, you know, the damage had been done over that period of time. Had we got her earlier, she might have been as disabled as she was, but we couldn't change with hindsight if things had been diagnosed earlier.
00:14:52
Speaker 2: You could not have been more present for it.
00:14:57
Speaker 1: No.
00:14:57
Speaker 2: You'd been in hospital for over three weeks begging for.
00:15:01
Speaker 1: Begging them to listen. You know what I mean? You get more and more frustrated. And, um, but you know, eventually somebody listened and, um, but that was the start of our, of our life with, with cancer and our experience with cancer and childhood cancer. It's, um, it's aggressive, you know, adults, it tends to be, cancer tends to be more, they tend to be slower growing because children, because they're growing so quickly, their cells are dividing much quicker than, than adults do. So it's, um, they tend to, you know, fight childhood cancer very aggressively with the chemo. and um and the treatments we have so she didn't get out of hospital for another i think three months actually after that whenever we started having chemo because we were in isolation for quite some time she got a super bug you know she you know then we had to go intensive rehab to hopefully get her moving and her mobility back which we did get you know she was a tenacious little little thing kenzie and um you know she was a very stubborn child she was very um strong willed child and a thing that went in her favour as it could make you end up having some nice temper tantrums coming from headstrong children but it stood her in good stead and I actually began to feel better that little child from that scared little frightened little little child that we were left with after three weeks of all of this going on.
00:16:25
Speaker 2: And pain like constant pain you write in the book about how she wouldn't start screaming when adults entered the room just because she knew that they were coming in to torture her in a different way.
00:16:40
Speaker 1: They were and the thing is we can't if anybody's been through any medical procedure we know they're not pleasant and doing them on children as a parent you know you have to do these things and let professionals do these things to your children but it's not nice you know and it's very hard for a parent to sit there and put their child through that when they're screaming you mummy make them stop mummy no mummy stop mummy and you're going your heart is breaking but you have to put them through it because you're ultimately looking at the bigger picture it's like they need this to hopefully get them better and get them well and and treat this thing but it's it's heartbreaking as a parent to do it and.
00:17:16
Speaker 2: I just want to share with you at this point that i have four children and my eldest child when he was six was diagnosed with leukemia.
00:17:25
Speaker 1: Oh gosh, so you.
00:17:27
Speaker 2: Know what it's like. I know a lot of what you wrote about in the book. And in children's cancer, as it turns out, this is also ironic, that if your child has leukemia or T-cell ALL that we had, that that is deemed to be lucky.
00:17:47
Speaker 1: Yeah, and how can you even call a leukemia diagnosis lucky? But if you're going to get any of the cancers, this is the better one to get because the survival rates are better. That's right. But there's still risks involved with that treatment and that illness.
00:18:04
Speaker 2: So Kenzie was then subject to, so this little girl, your poppet, who had lived for the outdoors like you, Had the tenacity of her mother. Had the love of her two-year-old brother who adored her and had a healthy, I think also gave her a healthy measure of respect.
00:18:30
Speaker 1: Yes, yes. She ruled the roost being that bit younger than him. He was her nonner. She adored her nonner, but yes, she didn't get her way enough. Connor had already got to the point of, like, to keep the pace, giving her what she wanted. Yes. Yeah.
00:18:50
Speaker 2: So because of her reduced mobility, which was she was paralyzed, you would still take her outside every day and you would go for your adventures outside, which she lived for, as did you, in.
00:19:07
Speaker 1: A buggy. In her buggy. We were fortunate with the hostel that was close to me and So we would have went out to the domain and she, she loved being near the ducks or outside, pretend she was a lion or go in and find and seeing a cat and thinking it was her kitten from, from the island. It was her pippy. So she had to go find her pippy. And I mean, that was your sanity really, because, you know, when you're in a hospital world, as you will know, Kate, you know, it's, it's nearly like you're become institutionalized and there's no great space and there's, and where we were at the hospital had no outdoor playroom. It was not easy to get to an outdoor facility for the, for the children. So to get out in the fresh air and greenery and and listen to the birds and see the animals and just you know the trees and all those aspects that we that we think about in nature that's good for your mental health that gets you through the healing yes yeah it's just that little bit of grounding to get you through the day to get you through what's going on it's a little bit of Yeah, it's just good for you. It's not a little bit of a fix. It just fills your cup up a little bit to get you through the next bit.
00:20:11
Speaker 2: Nick, at this point, so you're in a hospital on the mainland, but you're torn still between your island life, which you've really had to kind of give up on, but you're also physically isolated and a mother trying to hold up half the sky and At this point, you had kind of the reinforcements came. How did that come about? Who did you have on your side at this point?
00:20:44
Speaker 1: Well, we had friends locally that came, like with John and Dee, but then when I spoke to Mum and Dad, you know, Dad flew down first, you know, so they decided to do a tag team and then Mum came down. From Ireland, yeah. from Ireland and then we had another friend come down that came down from Ireland after mum so we had like a schedule of people to come down and we also managed to get a wonderful au pair in as well because while I was in hospital with Connor you know Connor was still on the island with his dad until he moved into town because he was going to school so that we had somebody managing the house here dad could continue to work and so Connor could get backwards and forwards to school and we had friends doing a tag team with a spreadsheets come in for a hand. And I think whenever life crisis happens to you, I mean, what you do need is the love of good people and useful humans. You don't need platitudes, but you need useful humans and the love of good people. And that's what fosters, I think, that's the thing that will foster resilience that will get you through any tough time in life. In life, you know, you will come out differently. It can't be fixed. But You know, you will come out changed from something, but you can, I find that through all of the crises that have happened in life, that for us, it has been good people and we've been able to function in life again and find happiness in life, albeit differently. And I think when you hold on to the fact that you are loved and you are cared for, you find the humanity in people. And that's when you know what true humanity is really about. In, cliche as it sounds, in your darkest or in your toughest times. That's when people stand up, you know what I mean, and the good will come to the fore for you and you nurture that.
00:22:30
Speaker 2: I'll be back with Nick after this short break. And you have had many tough times and many darkest hours, not the least of which I imagine was when you were in hospital with Kenzie, still, you know, tending to her care, surviving her treatments. You were in the shower and you discovered a lump in your breast.
00:22:55
Speaker 1: Yeah, and people had lost quite a bit of weight, which we weren't paying any attention to. We thought it was the stress of Kenzie. And I had the smallest boobs you ever did see, Kit. I mean, literally it was two fried eggs, so it was easy to see a lump. And so I had, again, a friend came and sat with Kenzie. I rushed off to get my lump seen to in the ED department. And again, they're going, well, you're quite young. It's probably nothing. You know what I mean? The usual thing, 31, healthy, active, young woman, unlikely to be anything sinister. But lo and behold, it was actually had stage three aggressive her two positive hormone receptive breast cancer. So I then faced a double mastectomy with immediate reconstruction. And then my own chemo had to start. So that was whenever we had a friend come down from Ireland, Vicky, because mom had to go home. that she came down then that she would be with Kenzie and Kimmy was looking after Connor and then there was Dee and John helped me through you know my hospital stay because then I wasn't able to go into hospital never had my treatment because I was neutropenic Kenzie was there so it's trying to cross over and the care structure so it did get complicated quite quickly but again good people came around us and we managed to get through we got through it somehow we got through it but we did get through it and And the more Kenzie came home, your life becomes very normal. All of a sudden you get used to this routine. And while it's abnormal for everybody else outside of it, it becomes hospital visits, chemo, nasogastric tubes, the Hickman lines, your own treatment. It all becomes being bald, watching your drugs, being on prophylactic antibiotics. All of this stuff becomes very normal. It's just part of your everyday.
00:24:46
Speaker 2: And Kenzie was delighted when you were bald like her.
00:24:53
Speaker 1: Yeah. She was like, mummy, mummy also bald. So it was like, because we were both the same and she loved it and she used to love it. It struck my head because it was like hers. And then she also understood when mummy couldn't be in hospital with her because mummy was having her treatment. She understood that and she could cope with that. But it's interesting. The medical staff were quite interesting though. There was an incident where I, over those couple of months where I was in the middle of getting surgery and my initial treatment, I wasn't in the hospital with Kenzie. So Vicky was in and we were, you know, tag-timing, you know, backwards and forwards from home. But the doctors had changed, so they had the new round of junior doctors.
00:25:31
Speaker 2: Ah, yes.
00:25:32
Speaker 1: And I came in one day and it was a young male doctor and somebody had introduced me, oh, this is Kenzie's mum. And he goes, oh, so you do exist? And I thought... You wouldn't have said that to, you know, if this was their kid's dad, they wouldn't have said it.
00:25:52
Speaker 2: But also, of course, you were so conscious, really your own cancer, which normally would be the headline in anyone's life story, was almost like a postscript to your focus that was entirely on Kenzie. And the fact that you couldn't be at the hospital, the cruelty, the casual cruelty of that. Not understanding. He didn't set out to say it maliciously.
00:26:21
Speaker 1: But how brutal. But how brutal. And it was a judgment call that, you know, a mother not being with her child. And it was a judgment call on his part. And it was the fact that I would have done anything to be with Kenzie. Because it had always been us, you know, our little unit. Whenever we were on the island, it was always Kenzie. me and the kiddies you know what I mean and they hadn't me and I was fortunate you know living on the island to be the one at home with the kiddies while they were pre-school because most it's a luxury quite a few parents don't get because of you know the cost of living now and um and we have to go to work and and daycare and stuff so I had the luxury of being with the children and um but then when Kenzie and I both got sick it was that that tear in it but she.
00:27:03
Speaker 2: Was But yet you had the, you had the, at this point her treatment and though it was, you know, though it was extreme, the nature of her Ewing sarcoma and your own treatment, you dared to dream at this point. You dared to dream of her going to school and how that would look and your own, you were going to finish treatment at the same time, you and her. Yeah.
00:27:31
Speaker 1: I mean, I think. You know, you don't think that something bad is going to happen. You think, well, you know, it's looking forward to a life that's going to be. Whenever she started to walk again, she was walking with a little walker. And we had our third birthday and it was a big, you know, we had a big thing in the park next door. And she was, you know, we made her a beautiful doll's house that she loved. And we thought life is going to be great. We're going to have a Christmas at home. You know, Connor's at school. You know, she's gone to, she loved going up to school and seeing where Connor went to school, her nonner. And it was like life was going to be good. And then came Christmas and something we didn't see coming. She got sexless. Yeah. So, I mean, for us, you know, she'd always come home on a broad spectrum antibiotic. And this time they said she'll be fine on a low spectrum antibiotic. But she did get an infection. And we were home, I think, two or three days just before Christmas. And she spiked a feverish back. We went into hospital, as often is the case with our little ones. And I had to go off and we brought her in. I was due to have my chemo. So I was off in the main hospital. So Vicky was with her. And by the time I came back to the children's hospital, they had actually moved to the paediatric intensive care unit. They didn't want to tell me in case I left my own treatment. So we were at the paediatric intensive care unit. But she was still, you know, they said it was a precaution. You know, she was ill, but she was still conscious and stuff.
00:28:58
Speaker 2: And they were confident of the treatment of the infection?
00:29:02
Speaker 1: Yeah, they were confident of the treatment. So I decided, well, I'll go home and get an overnight bag. You know, Vicky will stay with me. I'll go get the overnight bag. Because we didn't bring an overnight bag. We didn't expect to be staying. But as soon as I arrived home, I got the call from Vicky to get back. And whenever I'd gotten back, she was actually incubated whenever she... And that was the thing. It's like, you know, my heart just broke in that moment. I had left her. And whenever she... The last thing she said was mommy. She sat up and said mommy and then she collapsed. And Biggie said for all intents and purposes, Nick, she thought it was you. but it wasn't me so I live with that but I suppose in one way it's a blessing I didn't see her that way in that moment but you know it was the most you know even that whole week you hoped for a miracle yes But it was a miracle that he knew he wasn't going to come. And the time sort of, he got Christmas, Dudley backed down, so he arrived on the 26th. But her little hands and her feet had gone, you know, purple. So we knew that, you know, and the plastic team had been down, said, look, if she survives this, her hands and feet are going to have to come. And I thought, jeez, no way.
00:30:25
Speaker 2: They were talking about amputating.
00:30:26
Speaker 1: Amputating. And whenever the child just, you know, whenever she just started to learn to walk again, she thought she was so clever and she was so, she was just grasping life because she had this wonderment at life. She loved living it. And I thought how cruel to steal it away from her again. And I just went, no. So she continued to decline over that week. And then we got to the 29th of December and they said to us next, she's letting us know it's her time. And I just went, yes. They said, we can keep her alive. We can keep her on the machines. And I just said, no, her body's had enough. She's had enough. She couldn't have done more. She couldn't have done more. And for a child that hadn't loved, she was a physical child. She needed a body that would do what she wanted it to do. You know, she loved being outdoors. She loved being physical. She loved the senses that the world had and all those experiences. And for her to not have that would be cruel. And I looked at myself, you know, if it was me, I'm a physical person as well going, I wouldn't want a life like that either for myself and neither would she. And her last show of courage was letting go of a body that could no longer do what she needed it to do. It was her last show of courage. But, you know, in the same token, we were preparing Connor for that. Yes, of course. Connor was with us the whole week and because it was Christmas, because she had the audacity to do it at Christmas, there was nobody there to support you know to let connor know what was happening that none of the play specialist team was on board none of the psychological team was there so i've been taking photographs of the machines you know when she went first into pediatric intensive care and explaining to connor what the machines were doing why and why he needed to be in the machines and as she was dying we were we were working through that with him as well and um because we were doing it in language that he could understand so he could process it too so he They're concrete thinkers, little ones at five, you know, so they can't think in abstract terms. They need to be able to see, touch. And children know when they're being lied to when they're little. So it's giving them the right information at the right time that they can understand. And again, being loved by a loving family around them.
00:32:36
Speaker 2: But also to navigate the, because there is a sense that children have, which is the beauty of children, that they think things are going to be all right. Yeah.
00:32:45
Speaker 1: Yeah.
00:32:46
Speaker 2: And how you prepare your boy to know that it's not going to be all right.
00:32:54
Speaker 1: And it is. And they learn how cruel life can be at a very early age. And I think we want to protect our children from that. You don't want to have to face that until adulthood. You know what I mean? How cruel life can be. Because you want the innocence, to preserve their innocence of childhood. But life doesn't play fair. And it's like, why us? Why not me? You know, why... You can't ask those questions because life is just bad luck, you know.
00:33:21
Speaker 2: So you let Kenzie go. She left on the 29th, which means this period of this time of year that is normally associated with joy and festivity is your, as you describe it in the book, your season of sadness.
00:33:38
Speaker 1: Yeah, I mean, it was never the same again and yet you– in the same token, you're trying to make something of it because, you know, you've still got a little boy and he wants the magic of Christmas. But he also knew, you know, and he learned very early on. It's like, I remember him saying to us, a few years later, we went to a friend's for Christmas and it was quite a big family of siblings and they're all laughing and, you know, joking around the table and banter. And he said to me, Mummy, if Kenzie hadn't died, we'd have parties like this. You know what I mean? He knew, you know what I mean? It changes, you know? And, yeah.
00:34:17
Speaker 2: What did you say?
00:34:20
Speaker 1: I said, Connor, probably we probably would have. You know what I mean? It's just, it's, and, you know, I remember another thing he said to us over the years, you know, after she died, we were watching a thing on TV and it was, I think it was out of Australia, actually. They'd invented something for amputees where it was nearly like a robotics where you could, there were new hands and feet, anyhow, robotics that, you know, amputees could have. And he said, oh, mom, if Kenzie was still alive, she could have had those. Because he's still even thinking about what his sister.
00:34:48
Speaker 2: He always thought about her. He still thinks about her. When the Christmas where he said, can I have her, can I get Kenzie's Christmas wishes? Or was it her birthday wishes?
00:35:02
Speaker 1: And he said, could I get her wishes? And he said, I wish God would change his mind and send Kenzie back again. That was his wish. That was his wish. Yeah, and it's one of those wishes you can't fulfill.
00:35:15
Speaker 2: So you fell into a well of grief.
00:35:22
Speaker 1: There was a before, I think, and the after, I think. You never want anybody to go through it. I thought I would never come back from it, Kate. It was the one thing that just about broke me. during the day you could function out by, people wouldn't know because you go out the door and you put your hat on and it's an act. You know, you really become very good at acting. And you're busy. You're busy, you can function at whatever you're, if it's your work, if it's your study, if it's your daily chores and your exercise or meeting with friends. You function, it keeps you distracted and you're processing what's going on in life. But then at night, it's you and your mind and you know where to go with it. And they were my darkest moments and my savior was Billy Connolly. Because I knew he was the one that literally, and it sounds facetious, but he was literally saved my life. Because in those darkest moments, you wanted it to end. I never experienced pain like it. I wanted it to stop. The one thing that kept me going, of course, was Connor. Because I knew with the death of his sister, if something happened to me, I didn't want this to ruin his childhood and ruin the man he would become. So that was what kept me focused and the strength to keep going in those darkest moments. But when the pain was so bad, I turned on Billy Connolly and the laughter would start because you cannot laugh and cry at the same time. They're two competing emotions. And I would, and I would barely laugh. And it was just, and he got me through those really dark, dark nights in those early days. And still to this day, me and Connor have a, have a shared love of good standup comedy and we'll still go to comedy show. It's never been a music show. It's always been, a good standup comic. And to this day, that's one of our major coping mechanisms.
00:37:09
Speaker 2: But there was an, you know, a symmetry that you weren't aware of at the time then, Nick, which was that you love Billy Connolly. Billy Connolly was saving you. Billy Connolly had Parkinson's disease.
00:37:22
Speaker 1: Yeah.
00:37:23
Speaker 2: And then during your, another form of your, I guess, coping was once again, you embracing the outdoors and taking on these physical challenges and, As well as you're campaigning to get Herceptin widely available to New Zealand women without it costing them $ 100, 000 a year because it was so effective in treating certain types of breast cancer. So you were doing that lobbying as well. Stay with us. My conversation with Nick continues after this break. You'd started a charity called Kenzie's Gift. which was to provide support, psychological support for families undergoing cancer treatments.
00:38:11
Speaker 1: We set it up to, again, because it was showing what, when it happened to Connor and other families that we met and other women that we met, the children and the siblings, these were the forgotten ones. They were the silent grievers. And there was no psychological support for them. So Kenzie's Gift provides... psychological support with psychologists and psychotherapists for children who have experienced the death of a parent or sibling or their serious illness in the family. And we also provide resources around it because that was a huge gap. Because while you can fix the body, if the person's side is completely broken, where is their quality of life? They cannot enjoy what the world has to offer. And I think at that time, you know, mental health and the impact of complicated grief or traumatic grief like this is, There was just nothing. And the impact just wasn't recognized.
00:39:03
Speaker 2: And there was nothing that existed. There was nothing that existed to care for those dealing with the grief.
00:39:15
Speaker 1: Not at that. Not with the siblings. That was me. I mean, that has changed now. There is more being offered now, of course. But at that time, there was absolutely nothing.
00:39:28
Speaker 2: And you started that with nothing. $ 3, 000. Yeah. And at the same time you were still undergoing your own treatment for breast cancer.
00:39:37
Speaker 1: Yeah.
00:39:38
Speaker 2: You were in a maelstrom of grief and you were working your way through it. And then your, I guess your salvation started was your outdoor swimming your outdoor pursuits your friends who lifted you up there and then you started more and more to notice that your body was not working the way that it should have you were stiff you had shakes.
00:40:05
Speaker 1: Yeah I mean what began to happen it was um I what happened whenever my body began to get really stiff and it was really sore at moving and and a tremor began to start in my in my right leg, it was beginning to start there. People thought because my reconstruction had, I did complications in my reconstruction, so I was having numerous surgeries to fix this reconstruction. So we put it down to that, the stiffness in my movement, movement being really, really this weird gate I had developed. And, but it turned out that all my symptoms I've been having between the stiffness and the tremor and the, urge to pee a lot and you know the catastrophization that I was having all the time and some choking symptoms all of these weird symptoms it was all down to Parkinson's and I'd had symptoms for about seven years and I was diagnosed when I was seven.
00:41:00
Speaker 2: Was it 45 wow so it hadn't been you know we come to.
00:41:08
Speaker 1: They began to build up over time so because it's a slow progressive thing so it's easy to dismiss it because the thing was about 40 when I started you know showing symptoms but it was put down on that swimmer's shoulder and I said you know with the reconstruction I am having issues with that it was easy to put it to something else and yeah so I couldn't quite I couldn't quite get my head around that one but then you know it was going to get quite nerve wracking as the symptoms were getting worse but as soon as you took the drugs the cinema which is dopamine replacement it was like night and day I mean it's like no symptoms to symptoms and when you were on and you were off so whenever I'm on you wouldn't know that I had anything wrong with me whenever the drugs were off the symptoms start back up again so it's in the tremors what's hardest to over time predict but exercise is really good for it too so.
00:42:00
Speaker 2: And so that gave you a kind of normality again.
00:42:06
Speaker 1: Yes yeah I mean it's that's the thing with I'm very science-based with my treatments. There's very smart people in the world. And with my consultants, what they will say, it's like they've got years of knowledge and years of research. So I go with what they will suggest. And I've always known having a good diet and exercise complements what treatments I'll take on. So with the drugs and with the exercise, it's worked really well. And with Parkinson's, they like to keep it simple, stupid. according to my neurologist. So it's like, keep the drugs, keep the stretchment and keep the exercise going. And it's, and it's been really, really good. And it keeps me functioning. It will change over time. Already it has changed. The trauma is more prominent with me now, but I can get my head around that again. I am above ground. I love living life. I love my friends. I love the outdoors. I embrace those moments when I can and am well enough to do them. I do them because there may be a time where I won't be able to, but for now I can.
00:43:04
Speaker 2: But you're, you're already encompassing so many challenges.
00:43:09
Speaker 1: Yeah.
00:43:10
Speaker 2: In, in your world. And then, so you've lost Kenzie.
00:43:18
Speaker 1: Yeah.
00:43:19
Speaker 2: You're dedicated to Connor. You've had Parkinson's.
00:43:27
Speaker 1: Yeah.
00:43:28
Speaker 2: And then, and this is when I was reading your book, I was like, I can't, Ridiculous. I'm only having to read it and I can't bear it for you. I can't bear it for you. And outside of war, is there anyone that has experienced such loss and grief and challenge, both physical and spiritual and emotional?
00:43:56
Speaker 1: I don't know. People have reached out and I have heard from some people who have got quite a few challenges different from mine, but it's, I haven't met another person who's had the same situation as me, but definitely her life has been cruel. You know what I mean? I think that's the only way to say it. I have come across others who have had.
00:44:19
Speaker 2: So it's not a nail in a coffin, by the way, because here you are with us.
00:44:24
Speaker 1: I'm very happy to say. Yes, you are.
00:44:27
Speaker 2: But you have gone back to Ireland and you've farewelled your dad, your beautiful dad, who was such a rock to you.
00:44:35
Speaker 1: And he died relatively young, he was 68. Again, this is where the heart condition comes into play. Dad had a, and it runs in his family, a condition called hypertrophic cardiomyopathy. And what that means is the heart begins to either get stiff and doesn't pump as well, so it doesn't pump the blood around the body as efficiently as it should do, and it ultimately leads to heart failure. So Dad had gone into quite end-stage heart failure, I think probably in his mid-60s, and that's what And that's what he tragically died of 10 years ago now. And we knew I had it. They picked it up whenever I was undergoing chemo because lots of chemos can be cardiotoxic. So it's part of the care package. And your son, I'm sure, was going through his heart function whenever he was going through leukemia. But my heart function was absolutely fine during treatment. And they had noticed a malformation in my heart wall which is noticed as a precursor towards the hypertrophic cardiomyopathy. So we noted it then and I had regular MRIs every two years to check on the function of my heart and how it was going. Fine, again for 10 years. And then it began to fail a little bit. So it wasn't working as well as it should do when I was about 40. So I was on medication, but I still could exercise and it was going quite well. Then in 2021, in the pandemic, I was down at a work event and I was noticing over time I was struggling to walk. I was getting really breathless and I was putting it down to the Parkinson's. I'm really struggling with my walking, struggling with my swimming. And when I was at a work event, I went to walk around the block, you know, take a break from the stand. And I was really struggling and I thought I actually need to contact Jonathan, my wonderful cardiologist I'd had for 20 years. He's a gem of a man. So I contacted Jonathan and listed off my symptoms and he said, well, Nick, I think we need to get you in. because it had the MRI six months before and it hadn't changed compared to what it had been a couple of years before. When my heart function had actually dropped by 10%, my ejection fraction was down to 26%, which meant I was pretty much going into end-stage heart failure. And at 40, what was I then, 49, 48, Jonathan said, we're looking at a transplant now. Those are words I never thought I would hear out of my cardiologist's mouth. I thought medication will manage this and I'll be on the similar trajectory to my father. And when he said transplant, I went into complete shock. I thought this is a sick joke. And he said, so he had to do a referral to the transplant team. And it's a very robust assessment for you to get onto the list. It's a week of assessments. Psychologically, physiologically, and physiologically. And you could have been ruled out.
00:47:34
Speaker 2: You could have been ruled out because of the Parkinson's or because of the breast cancer. And also because this had not occurred to me before, but there's so few hearts available because they're donor hearts and they've come through someone dying. And there's so many people that need hearts. So they're quite rigorous in their, as you said, in their process.
00:47:59
Speaker 1: Yeah, and they want to make sure that somebody who gets a heart, that physically it will work really well for them and also psychologically that they can deal with the process that is involved with it because you've got to have a– for a good diet, you've got to really exercise well after. You've got to have the– social support around you, you know, because there's lots of appointments and stuff post-transplant and the rehab that's involved and making sure that you are health compliant. There's lots of vaccinations required. You have to have all the vaccinations to look after this precious heart that's been given to you by a donor that you will, you know, adhere to the protocols and the medications that you're given. So if you are slightly anti-having medications, well, you know, this is a precious organ that's been given by a, by a gorgeous family that in their dark side, their loved one has died. Their life has changed in that moment. And they're given this gift to someone. So with that comes responsibilities that you really need to separate. And that is you need to look after and have the vaccinations, have the medication, stick to that regime, have a good diet.
00:49:10
Speaker 2: And be prepared to answer your phone.
00:49:14
Speaker 1: Yes.
00:49:14
Speaker 2: The second they called. So your phone has to be with you. So once you were accepted into the program to wait for a transplant, which was in itself miraculous, they test you all the time by sending you messages.
00:49:33
Speaker 1: What is going on here? When they told you within four hours, you need to be at the hospital. Now things have changed slightly because and in Australia you've got this wonderful technology as well, it's called Heart in a Box. So the heart no longer comes on ice which means you've only got a certain window to get it in before the heart gets damaged. Now it comes in a box which is profuse so unless the heart is still beating and alive and so it's in much better condition for the recipient. It means then your pool of recipients is further so often Australia and New Zealand will share If an organ's not available in Australia, but we've got somebody in New Zealand who will benefit. The flight time, because you've got to be 12 hours as opposed to four. So it means, which is really, really good. But anyhow, I was in the sea one day swimming. It was more dipping with my friends. That was my mental health moment. And we were literally in the water 10 minutes. And I got out and my phone had gone off six times. It was transplanting. And Jane said, oh, oh, oh, oh, oh, I'm only on the scooter. How are we going to get you to the hospital? And we all got into this flux. So I phoned them and said, oh, no, we're just checking up. Why did you not answer your phone? I said, I was in the sea. They said, well, you've got an appointment next week we need you to come in to. And I thought, oh, you've got to be kidding me. And there's another time I was on the bike and I have an e-bike because I don't drive now because of the tremor. But it was like, again, the phone was going off and I had to stop nearly in the middle of the road and take the phone call. And again, and then when I did get the heart, bless their cotton socks, it was like I got the phone call. It was online. It was lunchtime. I was doing work emails. And they said, the heart is here. And I said, oh, right, okay, rushed to get in. I said, oh, no, don't panic. Take your time. It's because it's come in a box. So my heart had come in a box with a much bigger window.
00:51:23
Speaker 2: But it was still, we'll see you this afternoon.
00:51:26
Speaker 1: It was still. We'll see you this afternoon.
00:51:27
Speaker 2: Time was of the essence.
00:51:29
Speaker 1: And then you. Yeah.
00:51:31
Speaker 2: Undergo, I mean, just the part about the heart transplant was revelatory to me because I think sometimes we just hear these things and then they got a heart transplant or, you know, a girlfriend of mine's had a kidney transplant. So you sort of like, it seems simple, but the complexity of it.
00:51:51
Speaker 1: Was extraordinary. Somebody said to me, the transplants are easy, but that's just plumbing. That's what a friend said to me who works in paediatric transplants. It's the aftercare, which is the medications. Because when transplants first occurred, I think it was back in the 60s, patients didn't live that long because of the rejection and infection would happen. Because our bodies are amazing things, it's a foreign organ, they will want to attack it. And the medications that we have now, the anti-rejection medications we've had, they're about 30 years old, the medications that we now take. So that is to stop your body attacking the heart. But it's a fine dance between we've got to suppress your immune system enough to stop it attacking the heart, but also then not too much that you then can't fight infections either, because that's what will often maybe a patient will probably die from post-transplant will be infection, the risk of infection or rejection. And because rejection can also damage the heart quite significantly. So you've really got to be really careful and careful about where you are, who you're with. I mean, you know, where you go to because you don't want to get infections as well because it can, a simple cold or a virus, well, you've got a normal functioning immune system, it's completely different for somebody that is immunocompromised as, well, as again, you'd know that from your son or neighbor who's immunocompromised from going cancer treatment. So same applies, you know, to transplant and you live with that for life. And with the transplant medication, you're at increased risk of developing cancers later on as well. Because you're immunocompromised and your body then, normally your body would fight off, you know, precancerous tumors or things happening, but we're at increased risk of other things happening. So again, we've got to be very careful.
00:53:41
Speaker 2: Also, the transplant itself was really physically challenging for you. Who's already, as I said, undergone a double mastectomy.
00:53:56
Speaker 1: Yeah.
00:53:57
Speaker 2: Treatment for Parkinson's and now you're having a heart transplant. Yeah. And just trying to get back your physicality. But what was extraordinary in that was when they take you, I think it was two weeks after you'd had the transplant or three weeks where they make you do the walking track.
00:54:19
Speaker 1: Walking test.
00:54:20
Speaker 2: Yes, to see how far you can walk.
00:54:26
Speaker 1: I mean, I think. Yeah, you have a walking test. And once you've done the walking test, I think it's to cover off like how far you go in a certain time limit, which I think equates to sort of normal and the normal population type thing that we've got you back to that point. Because, I mean, after the transplant, I was out of ICU after day three. I was in HDU for two days and I was in the hospital for day four. So I was discharged after nine days. But even in that time, when you're in ICU... how weak you become. When they got me out of bed for the first time, like three days, all my muscle had, it literally had felt as if they'd all wasted. Even trying to get on, to sit, you know, then to stand. You couldn't believe how weak a body becomes. And I thought, you've got to be kidding. I couldn't believe it because I'd always been this physical person. I couldn't believe that that's how your body condition goes so quickly. And then learning to do sit to stands and turtle, and even just doing, you know, like squats and things. I was like, how could our bodies get so weak so quickly?
00:55:35
Speaker 2: Or just going to the bathroom.
00:55:37
Speaker 1: And having a shower, you were knackered. You were completely exhausted. But I think because your body's trying to heal itself so much from the, it's just been so, it's taken this major assault on it, you know, and I think it's recovering so much. But I just couldn't believe, you know, how tired, fatigued, And then you've got so many drugs on board as well. You're just, your body's all over the show, really. It's physically mentally. And I have steroids in it. I've got to say, another steroid in my life.
00:56:07
Speaker 2: How was Connor during this period?
00:56:12
Speaker 1: Well, again, it was actually really challenging for Connor because at this point, Connor would have been 21 when I was going through this. And bear in mind, this sort of triggered memories for him from his sister. Because, I mean, when his sister was in pediatric intensive care, He's had me really as a stable, you know, for this growing up. I mean, he's seen his dad on holidays and things like that. So he's still having a relationship with his father. But it has been primarily me. And while we were waiting on the transplant, it was interesting. We were very open with our conversations. And this was quite a funny one. I had started, I had planned my funeral in advance because both options. If I was to die, Connor and I needed to make sure The life insurance and all the admin was taken care of because he was only 21. And I also didn't want him to be lumbered with a funeral. So I had planned the funeral with my friends and stuff. We were quite open about it. But I hadn't quite told Connor about the funeral plans. And we're sitting in front of the TV this night. And one of those ads came out, you know, making sure you're looking after your loved ones and stuff. So it came up and I went, Connor, don't worry, I've got it all sorted. He says, oh, thanks. Christ for that, I was shitting myself that I would have to take care of it. So it was actually one of those lighthearted moments. And I think why we're fearful of having these difficult conversations, they actually are more empowering and they dispel a lot of the fear that people are carrying. You know what I mean? Because knowledge is power. And even if it's going to come with a bad outcome and the outcome that you don't want, but if you're prepared, it makes things a little bit easier. it's not so hard, you know, I mean, and it's easier for somebody to process. And Connor, you know, he did stop university for a few months, you know, while I was undergoing treatment because he came back home from uni. So life sort of stopped for him as well. Like really at 21, he wanted to be out partying, carefree and not having to worry about his mom. So it was a bit, He did get a bit frustrated and angry, as is the want of a 21-year-old. He doesn't want to be looking after his mum and having to talk to him that he needs to walk the dog.
00:58:15
Speaker 2: And he doesn't want to have to get another tattoo.
00:58:17
Speaker 1: No, he doesn't want to have to get another tattoo.
00:58:20
Speaker 2: So this was so beautiful when he was 18, just before he's 18. What did he tell you that he wanted to do?
00:58:28
Speaker 1: So it was funny. We were coming home in the car. It was from a rugby game. And he knew he would always get me in the car because we were sitting side by side. So he said, oh, mom, I want to get a tattoo. And I was like, absolutely not. Are you getting a tattoo? But before I said that, in my mind, I'm saying that. And then he goes, I want to get it for Kenzie. So I've always got it by my side. I said, oh, absolutely. How much is it? Where do you want to go? Anything you want, darling? And he got a beautiful tattoo and we actually created a short video of that short film of him getting it and actually opened up a conversation with lots of other young adults whose loved one needed to be a sibling or a parent had died and they'd got a memorial. tattoo. This is Dear Grief? Dear Grief. Yes. And Prince William wrote something lovely for Dear Grief as well. We also had a photo exhibit. So he wrote a lovely letter to us for that as well. But it opened up beautiful conversations. And I think because death, dying, grief, They're hard conversations and people find it hard to talk about. But for us, because I've been in a part of society where it happens around us all the time. And I think to be involved with somebody's death is an intimate, precious, personal experience and can be empowering and you can have a good death. And I don't mean that flippantly. I mean, I think, but it's a personal thing. You know, when Kenzie had a good death, you know, we were all with her. You know, my father died alone in hospital. We were all with Kenzie. So when I say good death, she was in my arms. We don't all get that privilege, but we did get that privilege. And I think that's something you can take to be, you know, we all will, you know, life, we all go out of it at one end. We don't want to go out early. We want to go out in the natural course of things, but life hasn't been quite that fair for us. But I think, to be able to be part of that and have those conversations. And I think what we find is being able to speak your loved one's name and share their memories because they've been part of who we are. So when I say, when I've spoken to friends and they've asked, what do I do? What do I say? It's just bring their name up, say their name, say the memory you shared about them. And whenever I've met someone and they'll often share, oh, I've also, my child also died and my partner died. I'll go, what was their name? And you can see that automatically they'll go, oh, and they love to share because oftentimes they never get asked.
01:00:56
Speaker 2: And I think because people on the outside of it are so scared because they don't want to cause hurt and they don't want to rip the top off the scab. But the fact is the top is always off the scab.
01:01:07
Speaker 1: The top is always off the scab. Yeah. And you can't upset them because they live with that every day. In their minds they just aren't talking about it because, yeah, I think it's a nice thing to do.
01:01:17
Speaker 2: One of the most beautiful gifts you received was from your friend Pamela when you were healing or surviving post-Kenzie. And she had, Kenzie had come to her with a poem for you that is now on her headstone.
01:01:38
Speaker 1: Yeah.
01:01:39
Speaker 2: And it is so beautiful.
01:01:42
Speaker 1: It was, it was, it was stunning. And it wasn't, we went up to Pamela after, just after Kenzie died, they invited us up to the Bay of Islands. And I think this is where two cultures came to be because we, In Irish culture, whenever your loved one dies, you leave the window open and don't block that window so the spirit can leave freely. In Maori culture here in New Zealand, when a loved one dies, they go back up to the Spirit's Bay, up to the Bay of Islands where they leave, you know, through the Pudukawa Tree up to where their homeland is. And like Pamela shared with me, we went out on the boat and there was dolphins in the bay that day and a dolphin and it sounds a bit unbelievable but it was true this beautiful dolphin was swimming around us and and just kept swimming around me in in the bay and it was absolutely beautiful and and i just felt a connection it's like it just felt something really connected with this beautiful marine mammal and i think they're sentient beings there's just something about it the experience was i can't really put it into words but i'm back that evening and i spoke to pamela about it she said nicola it's um it's um We believe in the bay that when the dolphins come in, they're taking the spirits of our loved ones up on their final journey to Spirits Bay. And she said to me, Kenzie came to visit her and she said, can I share this with you? And she shared this beautiful poem that she wrote when Kenzie came to visit. And I asked her, I can't quite, the top of my head, I don't have it in front of me to tell you what it is, what she wrote, what Kenzie.
01:03:18
Speaker 2: I wrote it down because it was so beautiful. And this, I guess, is the blessing. God lent to me an angel for just a little while to name, nurture, hold and cherish. Her face lights up with smiles. She called me mum. We laughed, took steps, rode that buggy many miles. She touched my heart, lifted me. She has overcome her trials. She's gone to be an angel. Mackenzie's watching over me in style.
01:03:56
Speaker 1: Such a beautiful poem. And it was such, because Pamela used to come over to the island when we lived there. And every morning I ran with both the children, we put them in the double buggy, we went over to Rangitoto, which is a dormant volcano here in the Hauraki Gulf. And we put them both in the buggy and we ran, ran up to the summit of Rangitoto every day. And that was our little thing. And it was our morning adventures. And that was where, you know, Pamela got it from and It was such a special time between Connor, Kenzie and myself. And that, whenever Pamela wrote that to me, it was just, it was so Kenzie and we have it on our headstone. And it was such a precious, it was just, in that moment, it brought me so much comfort. Yes. Because my heart was, I was so broken. And, and to be reassured that, that she was okay. Mm. And, you know, life would be okay. And we would, in some way, be able to carry her beautiful memory and her legacy forward as we went through life. And, yeah, I think that's the only solace you can take from it because nothing ever is going to make it right. But it's how we can live with it. And we can live with it with that lovely poem.
01:05:11
Speaker 2: In the book, I'm struck by your beautiful therapist who you lost.
01:05:15
Speaker 1: Along the way. She was an amazing woman. And really, if it wasn't for her, again, I know I credit Billy Connolly, but Max, you know, was such a straight shooter. She was a colorful, she had bright red hair. She was an operatic singer, but she was just this, she took no nonsense. She was very much like me. She wasn't a woo-woo. Yeah, she just, she was such a blessing. Angels walk amongst us, as they say. Yes.
01:05:39
Speaker 2: And when you would say to her, when you were consumed by the drag of your grief, and you would say, how long will I feel like this? She would say to you.
01:05:51
Speaker 1: She said, you know, how long will Kenzie be dead for?
01:05:57
Speaker 2: Yeah.
01:05:57
Speaker 1: And it was for life. And she said that, you know what I mean? And it's getting to the point where you realize your grief grows, life grows around your grief. Your grief doesn't go anywhere. It doesn't get any smaller. It doesn't get any bigger. It's there. And I think time eases the rawness of it. When I explain it to people, if there's an easy way of explaining it, I suppose in one way, when the grief first happens, it's like having an acute attack of a physical condition where it takes you to your knees, there's so much pain, it's overwhelming. But over time, it eases off and it becomes more of a chronic condition where you can live with it, this base level of pain, where you can live with it. And then you'll get a flare, which will knock you off your feet again. You may be in bed for a week. But then you can re-emerge again and that's what it's like living with grief. It's like then coming from that raw, acute, intense attack of something to a chronic condition and it's always there and we live with it, yeah.
01:06:47
Speaker 2: Because you seem someone who's imbued with faith, you know, faith in the natural world and faith in love. Do you think you'll see Kenzie again?
01:06:57
Speaker 1: I don't know that it's, I think, when I think about life, I don't have faith in a higher being as such. I do believe, I mean, Kenzie is part of me, you know what I mean? And in all of her being, well, I character, so from a cellular level, physically, she is part of me, as is my son. But I think from her soul and all her memories and the spirit that she is, it is within me and that's how I live my life. And I think, you know, as I said, the reason every other challenge that I've had in life doesn't come close to the death of Kenzie And Kenzie taught me, what I learned from a three-year-old is the best lesson I've ever been taught in life, is to live life in the way she lived it. It's full of wonderment. And I think as adults, we can't live in the immediacy of childhood that children do. Because we've talked about paying our bills, not being homeless, drinking after health and all those other things that comes with being adults and being part of society and providing for ourselves and our families. But still to hold on to that wonderment of life. She loved living life. And I think I love living life. I love being above ground. I love celebrating in Conor's life and watching his achievements and I just hope what I hope more than anything is that life will be kinder to Conor that he will that he won't experience what we've he's already experienced it with me and Kenzie going through it but I think I'm just hoping life will be kinder and give him better breaks than what it gives me and um because when we went diving after I got my heart transplant I was told by Jonathan that I could go back scuba diving again um And I went diving with Connor because that was a dream I'd always had to be able to dive with my son.
01:08:29
Speaker 2: Which is a miracle, isn't it?
01:08:31
Speaker 1: It is a miracle. I mean, it's a modern miracle. It is. And that's where it is. It's like, it's not something that was just out of the air miracle. It actually was a miracle. The fact that I could, through a beautiful family that gifted me my heart, that I could then go and experience this with my son and dive with him, both of us together and both of us in that moment, been able to reflect on on our lives to that point. Our shared grief of not having Kenzie in it but still with us. and I think that you know being able to like how he lives his life and how I live mine and being able to share that with him and when I thought I was 23 when I learned to scuba dive and Connor was 23 when we went in that dive and I thought you know whenever I was 23 if I thought would have had any idea of what life was going to come at me with. You know, you wouldn't have got out of bed if I thought for one minute. I'm not going any further. I don't want to. Because you wouldn't want that for any of your children or anybody to experience what I've gone through. And if I thought for one minute that life was going to do that to Connor again, I'd be raging at the world. I would be absolutely raging at it. But I've got all I hope is I've now given him the foundations through the love that we've had, through the shared love of everybody. in this country that we've met. And my brother has been fantastic with Connor, wonderful support and a good male role model for Connor. I just hope that life, through the love that's been shown to us, that we will continue to enjoy life.
01:10:04
Speaker 2: And also, if you had seen what lay in store and said, I cannot, you would have missed the gift of Kenzie.
01:10:12
Speaker 1: Exactly. And I wouldn't change my life. what's happened and don't wish for a different one we'd wish of course that Kenzie was with us but life dealt us a different deck than that but I can't keep looking backwards and going I wish I wish I wish and people have sometimes said to me Kate do you never feel sorry for yourself do you never have a pity party I do whenever I'm having it hard I will go and I will retreat into myself I'll take myself off on my little walks and my swims and my dips and lean into my friends and lean into those moments when life is hard. We all do because our brains can't be on high all the time. But I visit. I don't live there. So it's okay to visit, but, you know, it's like come out of it. I don't live there, but I'll visit when I need to. I think that's the best way to approach it really.
01:11:08
Speaker 2: Nick Russell, your capacity to share yourself. And to take a lemon, and if not turn it into lemonade, to turn it into something for the greater good is really extraordinary. The lives you have touched with the millions of dollars you've raised through Kenzie's gift and your work with the Herceptin and now your book, Bollocks, it's been such an honour for you to share your story and the story of Kenzie with us.
01:11:44
Speaker 1: Well, thank you, Kate, for letting me share it. I mean, I think for me, as I said to you probably earlier today, it's been the love of good people and useful humans. And the people have been so kind to me over the years. This is my way of paying it forward, of that kindness. And I think that's what makes humanity. And it doesn't have to be a big gesture back, but if somebody's shown you kindness, your kindness can be a simple gesture of going for a walk, taking somebody a cup of coffee, Send them a text message going, I'm thinking of you today. And ask them a question just so you're on my mind. On a birthday or anniversary, if someone has died and they're loving, take down the birthday on your phone, put it as a reminder.
01:12:21
Speaker 2: Oh, Nick, may the wind always be at your back.
01:12:26
Speaker 1: Thank you so much, Kim.
01:12:28
Speaker 2: I've sat beside my own child's hospital bed. So there were parts of Nick's story I recognised and parts I honestly cannot imagine. What struck me most is how little room she leaves for self-pity. As she puts it, she visits that place sometimes. She just doesn't live there. But what I'll carry from this conversation is something so simple. When someone you know has lost a person they love, say their name. Ask about them. Maybe put their birthday and the anniversary in your phone and on the day send a text that just says, thinking of you. As Nick says, be a useful human. If today's episode has brought anything up for you, please reach out to Lifeline on 13 11 14. And if you haven't registered as an organ donor, it takes about a minute at donatelife.gov.au. You'll find further information in our show notes. Nick's memoir, Bollocks, is out now. If you enjoyed this episode, make sure you follow No Filter wherever you're listening. And Mamma Mia subscribers get to hear it first. Every episode of No Filter drops two full days early, exclusive for subscribers. Plus, you get access to subscriber-exclusive episodes across the Mamma Mia network. Tap the link in the show notes and become a Mamma Mia subscriber today. I'm your host, Caitlin Brook. Thank you so much for listening to No Filter.