Continuing the Conversation

Nine podcasts. Hello and welcome to Kids Cancer Conversations. My name is Georgi Gardner, and in this podcast series, we explore the hidden side of childhood cancer, the non-medical part that often gets missed on the cancer journey. As an ambassador for the Children's Cancer Charity Red Cite, I've seen first-hand the devastating effect a cancer diagnosis has not just on the child, but the whole family. In fact, childhood cancer is a family illness because every member is affected. I've learned over the years that the non-medical needs, the emotional, financial and practical needs, are just as important as the medical needs. And so, in this series, that is our focus. We speak to people with lived experience, as well as experts in the field of pediatric oncology. We want this podcast to be a useful and informative resource for anyone navigating the childhood cancer journey, a journey that is both frightening and isolating. This is a podcast to offer you help and hope. No family ever expects that they're going to hear those words that your child has cancer, and parents describe it as the worst day of their life. It feels like a fully loaded train has hit them. You don't treat a child, you treat the family. When an 18-year-old sends you her photo of her driver's licence, you know, that she's achieved that, and then she was treated as a three-year-old and. Oh, you're making me tear up. In this two-part episode, we're going to get an overarching snapshot of childhood cancer. How prevalent it is, the challenges it brings, the treatments and support services, the misconceptions, the long-term effects, as well as life after leaving hospital. To do that, I'm joined by the CEO of Children's Cancer Charity Red Cite, Monique Curie, along with the Director of the Cancer Centre for Children and a Senior Staff Specialist at the Children's Hospital at West Made in Sydney and Pediatric Oncologist, Dr. Luciano Dallapotza. Hello and welcome to you both. Well, great to be here. Lovely to have you here. Luciano, I'm just going to kick off by saying, "You are affectionately known as luch," which I'm going to call you for the duration of this podcast. But you're also known as Dr. Dallapotza. Just talk us through that. So the surname Dallapotza comes from its Italian, that's where I was born, from a little town called Potsa. So Dallapotza means from Potsa. And of course, it's very easy to run that into Dallapotza. It's a lot easier to remember Dallapotza when you're a parent or a child, and everyone knows who Dr. Dallapotza is at the hospital. So you wear it with pride. With great pride. I love it. Luciano, I'm going to start then with a very broad question. How does a child get cancer? We know lifestyle-related factors can play a role in adult cancer. But is there ever an explanation as to what causes cancer and kids? Look for the most part and no children. Are you quite right? Adults are victims of environment. So there are factors in their life over a long period of time that is responsible. Contributes to cancer in adults. In children, they really haven't had exposure to what we thought we think are cancer-causing agents out there. There are around about 10 to 20% of children. Probably we have a genetic weakness. That really often doesn't come from the families to starting in them and that predisposes them to cancer. It doesn't guarantee they get cancer, but it just sets them on the path. So, only for a minority of kids, do we actually find a cause for it? For the majority, it remains an unexplained area. Because I imagine at that point of diagnosis, so many parents would be almost blaming themselves. What have I done wrong? What have I exposed my children to? In fact, very often, I imagine, for the majority of the time, that's just not the case. That's right. There's nothing that they could do to prevent it. And what you find that you have to help the family through that or erase that guilt. It has nothing to do with them. And even if it were genetic, it's still your prisoner of your genes. There's nothing you can do. So that's your absolutely right. What are the most common types of childhood cancers and how does Australia compare to other countries? Do we know it? Look, the commonest type of cancer overall is leukemia. Cancer with the blood. Cancer, I beg your pardon. Yeah, absolutely. Cancer with blood, cancer with the white cells. Broadly, followed by children with brain tumors. That's that, I can't say about a quarter of the children. And then the last half or so, really, I made up of cancers of different, what we call solid organs, bones, muscles, kidneys, so altogether, we find that the commonest type is in fact leukemia. And does that tend to be the case elsewhere? Is that sort of a global breakdown? That's true for Western developed countries. Right. It's a little difficult to be sure about countries with limited incomes. That's not quite, the figures aren't quite as accurate. The other important thing to note is that unfortunate Australia has amongst the highest incidences of cancer in the developed world. So we rank up there in the first four or five. I didn't know that. And do we have any understanding as to why that is? No, it's hard to explain. And the other thing we should note is that the incidence of cancer in children is slowly increasing. And everyone will get scared by that. But in Australia, that basically means that from one year to the next, there's an extra three or four children. It's not a massive increase. But that trend has been so persistent over sort of the 20 or 30 years. So there's slow increase. Now, it'd be tempting, of course, to say it's environments the way we live. And potentially that's there. It's just very hard for us to find what in the environment did it. You know, it wasn't exposure to electromagnetic fields. It was exposed to certain chemicals. It was at pesticides, all unproven. And it just reflects our, the frustration we feel in trying to understand. And while it's important for us to understand, Heavens knows the parents want to know. You know, what could they have avoided? What was, what could, how could the pathway be? Have been different. So the incidence is slowly increasing. But the survival rate is also increasing, is it not? It is. In fact, that's a testimony. Most of research and the capacity to better use the medicines that we have. And so the combination of medicines or chemotherapy with radiotherapy and superb surgery. And that's now been augmented or increased by our ability to tap into a patient's immune system. And try and train the immune system to do some of the heavy lifting in getting rid of the cancer. So the combination that has slowly seen the cure rate rise to where 87 or 88 percent of the children are alive five years after diagnosed. And that's a benchmark. If you can get that far, you know, you're on a really good wicket. So the bottom line is the great majority of kids are cured of their disease, suggesting that sort of preventing it all together from a medical perspective. We are fearing very well. Manique, let's then now talk about the non-medical needs. Just if you could describe for us the psychological and emotional impact of a cancer diagnosis on a child and its family. No family ever expects that they're going to hear those words your child has cancer. And parents describe it as the worst day of their life. So it's devastating. And we are fortunate to live in a country with some of the best outcomes and treatments for cancer in the world. But it has come at a cost and Luch and I've actually had a conversation about the fact that what isn't talked about enough and what people don't think about and what often goes unsupported. It's the non-medical impacts of childhood cancer and just the the fact that it has puts extreme pressure on every single family member. So it challenges relationships and it destroys marriages. The siblings, brothers and sisters, they are separated for heartbreakingly long periods of time. It impacts career because parents can't work. It impacts education when kids can't go to school. The fear and anxiety, it is a reality that these parents face from day one. So it is really tough and there is so much that goes on and we at Redkite call that the other side of cancer, that other side that often goes unnoticed and unsupported. So let's just reiterate that, that is what Redkite is all about. It is offering all that non-medical support and assistance, be it financial, emotional, psychological, all of that. That's right, it's really looking at the fact that actually a mum said this to me, she said the day my child was diagnosed with cancer, actually every family member was diagnosed with cancer on that day in some way because it impacts everyone and families need support. They absolutely do, what do parents tell you their greatest non-medical needs are in those early days when they've just received the diagnosis? Well, even just that first moment, often the parents have just, they're wearing the clothes on their back, they go into hospital. There might be some bruising or some other symptoms, but they don't expect a cancer diagnosis. So with the clothes on their back, they find themselves in hospital and unexpected hospitals stay that can be days, weeks, months. So often they need the practical things like toothbrush, toothpaste, the kind of things that people don't think about. And that's a diagnosis pack and special bag that they're given at that time, but really the financial impacts happen immediately. You never see a child in hospital without a parent at their bedside. That means that parent, if they were working, had to give up work overnight and to be at the bedside, but the bills keep coming in. But it's really the emotional toll that it takes from day one and that devastation and upheaval and navigating the new world of cancer. And there's a whole other layer of complexity if that family comes from a regional part of the country, too, isn't there? Well, yes, and Luke could talk to this bit, what people don't realise with childhood cancer is that kids don't get treated in regional hospitals like adults do. So every child goes to a major children's hospital in Western Australia. That means all families go to Perth in Queensland. It means all families go to Brisbane. So for regional and remote families, that relocation means families are torn apart from that first day and that can last for the months, I'm speaking with the mum recently, she and her little country kid, they didn't get home for 12 months. Yeah, it's hard to fathom, isn't it? And often it's a call to action very quickly, isn't it? Because the child, depending on their age, hasn't necessarily picked up on how sick they are and been able to verbalise anything that's a bit odd in terms of their health. And so when they get that diagnosis, it is literally get in the car and get to hospital now. That's what happens. In general practice land, each general practitioner will probably only see one child with cancer every 20 years. And so it's not something that general practitioners are attuned to. You can understand why you think about crops and crops and saw aches and pains and things like that, but you don't think of cancer. So it's a very uncommon presentation in for general practitioners. In cancer centres, it seems like every child has cancer. That's because that's exactly where they're referred there. But out in the general community, you often see some delays in diagnosis, simply because it's just not the first thing that she piece think of. I see. So what would be luch the most common signs and symptoms of childhood cancer? Generally pain and tiredness. Take a normal child, they run around, they cause havoc, they climb stairs, they fall over, they're often ratty or tired or bruised or well, they need to, that's a normal child. The child slows down and just sits down and is no longer active or starts, there's no explanation for children losing weight. So loss of weight, loss of activity, tiredness, change in mood, sometimes the teachers pick it up, they suggest there's a problem, they should be running around and causing havoc. They're the sort of subtle signs. Of course, there's always a lump and a bump that needs to be investigated, but the subtle signs are, and you have to rely on parents, particularly mum. Mums have this intuition that there's something wrong, and they might say it circles under their eyes a bit, they're a bit dark. You've just got to be careful before you dismiss a mum's thoughts. They're often right forward, not necessarily the right reasons, but they're often right. And so you have to pay attention in a child that is coming back to a doctor four or five times, but to sit back and review what is it you're thinking of? And the other, I should make a point about what Manique has just said, and a lot of families, when they first come, just shut down, they don't necessarily accept help immediately, because they feel they should be able to cope with anything that comes along, and teasing that fortress of resistance, or teasing it out, take some time. And that's where organisations such as RedCight take their time and their gently prize open the doorway, and then once the doorways open, then a lot of stuff comes flooding out. And their emotional needs, what they actually require, what they actually need to function normally. Is that a pride to think, do you think, Man, in terms of the perhaps taking a little while to accept assistance? I think from the stories that I hear, sometimes it's just complete overwhelm. There is just too much, and they're just taking one hour at a time and just trying to process something so big. What I often hear from mums is that they just have to hold it together, and it's all about the child, it's getting whatever medical treatment that child needs, and it's almost any other needs, it doesn't matter how anything else doesn't matter how I'm feeling, how anyone else is feeling, that's just get the medical attention that's needed. And it's when things do start to calm down a bit and they know they're in the hands of someone like Looch, that then that reality sets the emotions and what's going on, and the fact that there's too much to unpack and too much to unpack alone. Looch once diagnosed, I imagine it's very tough to have to share that news with the child and with the parents. How do you do that? It's not as hard as it's probably, it sounds metal and dramatic, but it isn't that hard. You have to infuse your talk with a sense of hope, and I can't think of a centre in Australia that doesn't at least, no, not a question of at least, I can't think of a centre in Australia that wouldn't start the conversation by saying, okay, we have a problem, but we can cure it. There's a degree of uncertainty. In life there's a degree of everything, so the point is you start the journey by saying there's a problem, this is where the issue, the diagnosis, but we can cure you. That usually starts, that starts the foundation for a relationship that's going to go on for many years. As you know, most treatments go on for at least six months, they can go up for two years. Sometimes the cancer comes back and you start again, and we get it right most of the time, we don't get it right around about 15% of the time, so 15 out of every 100 children, ultimately, unfortunately our treatments aren't good enough yet. But I imagine parents are clinging to that hope, so it must be so important to begin that conversation with. Oh absolutely, and if you're upfront and everyone should be, and I believe they are, and you're honest with them, if you tell them everything at the beginning and you don't hold anything back, then they come to trust you. That's important, that's at the parent level, but as children get older, they particularly are older children, they know what's happening, and they need to be confident that what you're saying is the truth. But it's not a hard thing to do, particularly when you believe that your therapy will work, and you infuse that confidence in them. What you can't tell them at the start is the journey, the ups and downs, the obstacles, and what Manik was referring to, those impediments that interrupt your life, and how do you refashion, reshape your life, your pathway, what you expected, what your ambitions were, your holidays, all of that, is something that Red Card helps with. Yes, but the bottom line is, I mean, your world has just turned upside down. Absolutely. Are there typical treatment protocols for childhood cancer, and how do they differ from those for adults? What tends to happen is that most children with cancers have a protocol that is usually complex, and as I said, last between six months and two years, sometimes a little bit longer, and those protocols have essentially been shown to be affected through a programme of clinical research, what we call clinical trials. And so what we bring to the table are proven therapies or therapies that we think will be of greater value, and they all, to some extent, contain a combination of medicines or chemotherapy, surgery, and/or radiotherapy. And that cocktail, that cocktail of treatments is generally applied to most patients. Some patients can be killed with surgery alone, and I'll give you a typical example. Once upon a time, children with eye cancer, surgery, removing the eye, was in fact, the way we went about things, but that's such a hard thing to do. And talking to a parent and saying you're going to do that to your child is a very difficult conversation to have. And so, just again, to show you the efforts that we've learnt that we can give chemotherapy and preserve, you can retain the eye. And it works in about 60 or 70 percent, not everyone, but again, it's a combination, the sort of combination that we use will vary from time to time. So at the moment, it's one of those, a combination of one, two or three things. And my understanding is that chemotherapy generally is incredibly effective in kids. In fact, they can tolerate a lot more than adults. Is that right? Perkilo, they can. Because they're young and they rebound really quickly. They repair the damage. There's no problem with chemotherapy. It's there to kill things that grow. Yes. And so, the fastest growing areas of a child's body or anyone's body are here. So, here falls out. Fortune's not permanent. Lining of their mouth, so they tend to get mouth ulcers, and their blood counts. If you donate a unit of blood today within two or three days, it's made it up. So the chemotherapy inadvertently affects fast growing tissues. And so, they're the major complications. What it's trying to do is just kill the fast growing cancer, but it just has those unfortunate side effects. And what is the role of precision medicine in pediatric oncology? Are we making great headway in that area? We are. A long way to go. Chemotherapy is sort of what we call agnostic. It doesn't recognize a difference between one type of cancer and another. And so, you'll find that we use a combination of something like 20 agents to treat basically all forms of childhood cancer. Precision medicine is saying, okay, we know that cancer's developed because of something going wrong within the gene of a tissue. And within that, if we can find that abnormality, could we target that abnormality with one specific agent, not a combination of 10 or 20? So to be that precise is that that's our aim through precision medicine. We need the confidence that precision medicine leads to long-term cause. We have that confidence with chemotherapy. We just have to show that it also works with precision medicine. I see. So that's sort of the next frontier, do you think? Yeah. And exactly how do you roll it into existing programs? Yes. And can you get rid of existing programs and replace it completely with precision medicine? That's our challenge over the next five to 10 years. Yeah, it's exciting. It is. Absolutely. So, getting age-appropriate medical care, obviously, is essential to Manique as his communication, which, depending on the child's age, isn't always straightforward, explain to our listeners the role that social workers play in all of that. I was interesting hearing Leach talk about telling a parent that their child has cancer. What a lot of parents, what I hear them talk about is just what they have to go through. When they think about, how do I actually tell my child or how do we tell my child, how do I tell their brothers and sisters, how do I tell the grandparents? That's actually a really big deal. And while they're still processing all that information themselves, so social workers play a really key role in those initial stages in helping to think about how to have those sorts of conversations. And those conversations are bigger than beginning around diagnosis, but they're big all the way through, they're big around how the treatment's going, just with the parents really helping them, giving them the tools and the time to unpack what's going on and giving them a safe place to actually talk about the fact that they might be absolutely terrified, they might be absolutely broken and devastated and their feelings that are quite hard to share with friends, often parents they don't share it with family, they can't share it with their kids, so social workers can be that safe place to explore those sorts of feelings, which are actually really important. Well, I know speaking to countless parents myself over the years, there's so much effort involved in just keeping it together and putting one foot in front of the other. And this is where social workers can offer so much support and assistance, can't they? Look, there's whatever turn. Yeah, at every turn, this mum told me and the way she told it, it's just think about it all the time, she said, I'm strong for my sick kid, I am strong for my other, for my other kids, I am strong for my husband, I am strong for my parents, the grandparents and she said, sometimes I just, I just don't want to be strong anymore and she said the one place that she could just let down her guard was with the red kite social worker and in those sessions and she said she would cry, she'd be angry and all those feelings and then she said she would finish that video call with that social worker and then she said she'd walk out that door and she'd be strong again for her child and strong again for the siblings and strong again for the husband and that role is really important and those parents need a safe place for that. Absolutely. Red kite also tries to alleviate some of the awful and unexpected elements of cancer treatment and again I've seen this in practice and I am such a huge believer and advocate of the music therapy and the art therapy, give our listeners a bit more of an understanding of what red kite offers on that front because I think it is wonderful. Music therapy, people talk about the power of music and you see the power of music in a whole different light when you see music therapy at work so music therapists, before I knew about music therapy, a lot of people think it might be just playing lovely music at the bedside and having volunteers come in, these are therapists who are a part of the multi-disciplinary team when it comes to painful procedures, often those music therapists are there to help the kids. There's, you know, communication can be hard, a lot of kids shut down so to see a little kid beating a drum, you know, you know, really hard and angry and that can be a just a way of communicating old a kid sometimes through songwriting and can show expression where they haven't been able to otherwise through music and one, you know, the power of it when it comes to sometimes radio therapy can be quite powerful. A dad talked about his daughter who had a brain tumour and needed to have radio therapy, general anaesthetic every day back to back for weeks and he said that the music therapist through music was able to just settle his child so well and keep her so still that she actually didn't need to have the general anaesthetic for that radio therapy. And that's powerful stuff. Isn't it? Yeah. Yeah. And one less drug going into her body. Incredible. I was listening actually to an interview the other day with a mother explaining that because the child is just being attacked on all fronts with treatment that one of the few things they can control is how much they eat and whether or not they go to the toilet and of course passing, you know, bowel motions are incredibly important if I'm right in saying luch. And apparently a music therapist had turned up and said right and the father said, "What should we write a song about?" And they said, "How about we write a song about doing a poo?" And straight away they, you know, put this song together. The child thought it was hilarious because it was so funny at the age of four to be talking about doing a poo and I'm sure enough past emotion and you know, I just thought just little things like that can make such a huge difference. It really does. It really does. And some of the kids, there's beautiful stories about kids being introduced to music through the music therapist and then taking that forward post-cancer learning in instrumental or doing music. We're going to come back and continue the discussion with Monique and Luch very soon. We'll talk about the impact a cancer diagnosis can have on siblings and of course the very real challenges that families have when they leave hospital and return home. If you've found this episode of our podcast helpful, please press the follow button in your podcast app. We'll publish a new episode for free every week. For further resources, advice and support, you can head to redkite.org.au. My thanks to the nine podcasts team who are behind this podcast, the executive producer Del Fordham, senior producer Hannah Sterling and of course the team at Redkite. I'm Georgie Gardner, thanks for listening and bye for now.