RECORDED Wed 17 Jul 2024
SUMMARY KEYWORDS: school, cancer, treatment, families, Danielle, children, kids, cancer foundation, community, hospital, siblings, William, support, care, talking, students, Todd, life, experience, protocol
SPEAKERS: Todd Prees, Danielle Smith, Megan Gilmour
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG telecom foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool co-founder and CEO. And this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:46
Welcome to our weekly webcast, a place to zero in on the interplay between health and education, and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges. So today we’re meeting with Danielle Smith and Todd Prees. A little intro to each of you so the audience knows some of your background. Danielle’s youngest son, William, was diagnosed with Neuroblastoma in February 2016, age six. After battling cancer for two years, William sadly lost his life in April 2018. Danielle and family continue to advocate for childhood cancers and support the Kids with Cancer Foundation. Danielle became a board member for Kids with Cancer Foundation in 2023. Welcome, Danielle.
Danielle Smith 01:37
Thank you.
Megan Gilmour 01:38
And Todd Prees. Todd joined Kids with Cancer Foundation in 2022 after a long career in the travel industry. Through his working life, Todd has always been aligned with purpose driven organisations having held leadership positions at the Day of Difference Foundation and serving on faith-based not-for-profit boards. Todd’s great privilege is to lead the team and oversee the programs and services at Kids with Cancer Foundation, helping make today easier for kids with cancer and their families. Welcome, Todd.
Todd Prees 02:08
Delighted to be here, Megan, thank you for having us.
Megan Gilmour 02:11
So, we’re excited to have you on Live & Learn because as I said at the beginning, we’re here to talk about supporting school connections for students with complex medical and mental health conditions. So, we’re just going to set the scene by starting off with you Danielle, if you will. Danielle, tell us about your journey with cancer and how it has impacted you and why it’s something every Australian needs to know and care about.
Danielle Smith 02:39
So, my son William was diagnosed in February 2016. Before his diagnosis he was ill but not majorly ill, it could have easily been brushed off as a virus. And so, we went from thinking possible virus, possible infection somewhere to, no we’ve got cancer, and then went through the protocol for Neuroblastoma, which is usually around 18 months of protocol. That includes chemotherapy, bone marrow transplant, radiation, immunotherapy. But at the end of 18 months for that treatment, William still was not cancer free and there was more treatment that came after that.
Towards the end of 2017, I knew his cancer had returned and was quite aggressive, just from what I could observe through him. And then we went for more tests in the January and at the beginning of February in 2018, we were told he only had a few weeks left to live.
So, I think it’s really important for me to keep advocating because it gives purpose to William’s life and everything that we went through. But it’s also something that, unfortunately can happen to anyone. And I think it’s really important for people to have that understanding and know that it could be their child, it could be their grandchild, it could be their neighbor next door, and what they go through is absolutely horrendous. And if I can do something that just makes it a little bit easier for the next person and the person after that, then that’s what it’s about for me.
Megan Gilmour 04:40
Thanks, Danielle. And I just want to acknowledge William and the journey that William had, and your family and to give our thanks to you for being willing not only to do the work that you do in the community, but also to be willing to share your journey which is incredibly difficult. And what you’ve said there that I heard was that your hope is that by bringing your lived experience to the forefront here, other people can have a somewhat easier journey.
Danielle Smith 05:15
Absolutely. Yeah.
Megan Gilmour 05:17
So, thank you so much. And Todd, what brought you into the world of cancer?
Todd Prees 05:25
Well, it wasn’t something that I sought out, it really found me to be honest. I was, as I said in the introduction, I was engaged fully in the travel industry. And then COVID-19 had a significant impact on that industry.
I was friendly with one of the directors of the Kids with Cancer Foundation and they were seeking out a new CEO to take on the succession of a founder led organisation, and organisation that was started by Peter Bodman back in 1998 with a real purpose and specific mission to make today easier. There were other charities that were formed at that time that were dealing with research into childhood cancers or providing extra-curricular supports to families. But Peter’s mission was really simple, and that was to try and do anything possible to support families today, and to make those who were encountering that that awful journey of cancer, make their load a little bit easier. And so, I was really in the right place at the right time.
I’ve found so much purpose about this organisation and about this mission. And it really has been a tremendous appointment for me, personally, professionally, but also, to feel that that is making a difference in the lives of thousands of Australian children, that just because we’re doing what we do, we have that great opportunity to help others.
Megan Gilmour 07:13
Yes. And thank you for your work too, I don’t know what we’d do without you both. Back to you, Danielle. And if you feel like you’ve already answered this just let me know. So, people probably assume things about cancer. What’s the million-dollar question asked by carers when their child experiences cancer as a diagnosis?
Danielle Smith 07:37
I think initially – through that shock – is why and how? And on some level, how did it happen, and I wasn’t aware of it? That was probably my biggest question. You know, how could my child be so sick and I’m not aware of what their illness is. And, you know, why did it happen, in the beginning? But then I think after that, once you get your head around the diagnosis, it’s about navigating it. How do I navigate through this? How do I get to the end? And what does it look like for me?
Megan Gilmour 08:21
And so, what’s the most important thing that you want them to know?
Danielle Smith 08:27
I think when life throws cards at you like that, the only thing sometimes that you have left is strength, and with support from a lot of people – and it’s not necessarily those that are in the hospital walls, there are a lot of people like the Kids with Cancer Foundation that can offer that help and support and guidance and give you strength when you no longer have it, and you can get through it.
Megan Gilmour 08:54
Yes, super important. And then Todd, knowing all that, you know, in the work that you’re doing, with Kids with Cancer Foundation, what’s your biggest hope for kids navigating cancer?
Todd Prees 09:09
Well, we have it very simply, our vision is a world where a child’s cancer diagnosis is an unremarkable event in life. So simply put, we want to be able to see that cancer is treatable. That there is some way that what we’re investing in research, that what we’re doing today, is going to have an impact for families in the future. That we’ll realise that vision, through the work of our scientists and researchers, but also just that tweaking of clinical care, that is going to provide the best outcomes for children. And that wouldn’t be unique only for cancer, that would be unique for any child or the illness. So, you know, we want to be part of that vision where, cancer doesn’t kill children.
Todd Prees 10:09
Unfortunately, we know, and to Danielle’s question and answer previously, I think one of the things that families would consider most when they have a cancer diagnosis, is this going to be terminal? Is my child going to live through this? What are going to be the lifelong outcomes of this diagnosis because a cancer diagnosis is something to be grappled with.
I think it’s possibly the most difficult information that a parent would hear about their child, all of their lifelong hopes, dreams and plans that are going to change after that diagnosis. And we’d love to be part of a longer-term solution to see that that doesn’t impact as much as it does currently. So, there’s much work still to be done. And that’s why we come to work and do what we do. We still feel like there’s much work to be done in the space.
Megan Gilmour 11:15
Absolutely. And cancer being unremarkable is a goal, for sure. Danielle, what are some of the common and perhaps frustrating misconceptions about cancer? And how did this impact you?
Danielle Smith 11:33
I think, initially, it’s all the misinformation that’s out there about the cancer itself in the community. And I know that that posed a real problem to William, especially in the school setting, because people gossip and they rumor, and they talk, and that gets fed down to the kids. So that was a concern for him, especially on the days that he was at school.
And then it’s, I guess, it spreads out like from there. But the whole treatment, the protocols, all of those sorts of things, yeah, I remember taking William to school one day, and we were waiting in line at the canteen in the morning, and a little boy turned around to him and went, “Oh, you’re still alive. Mum said you’d be dead by now”. William lovingly took it in his stride and in his grace said “Well, your mum doesn’t know what she’s talking about” and continued my heartbreak. But you know, William just kept it up and kept going.
I think, misconceptions too, after treatment, that once a child is through their treatment, and they’re no longer holding disease, that everything’s okay. And I think it’s so incorrect, because there’s so many things that happen due to the treatments that they’ve had. You know, their battle’s only really just begun once they’re through their treatment, and they have to grow and survive through life after that.
Megan Gilmour 13:12
Yes, indeed. And this is why we do the work. And, you know, your example, or your story and William’s example, there is one that stands out for me as well, as a misconception, is that, you know, when a kid has cancer, that they’re just in intensive care, or they’re laying in a bed all day. And of course, that does happen across that journey, but there’s also a lot of time that they’re at the canteen, and they’re playing. So, this idea that you’re either just laying in a bed and can’t do anything, versus still being able to participate in things, is really one that I like to draw out as well.
Danielle Smith 14:06
Yes
Todd Prees 14:07
You’ve highlighted what we know are the phases of treatment there, Megan, where there’s obviously intensive phases of treatment for chemotherapy and radiotherapy, but then there are long phases of periods where there is an opportunity for children to regroup and participate in community a little bit more normally.
And then there are obviously longer phases, depending on the treatment and the type of cancer where that is just not possible. Immunocompromised children have to stay isolated. And we know that that can be an extremely debilitating phase where it’s not only social isolation, that lack of community confidence, depression, all sorts of negative impacts not only of the physical treatment, but also that mental load, that disconnect that plays a lot on kids.
Megan Gilmour 15:14
Yes, indeed, and I think we’re going to end up a little bit more into that territory as we go along in this conversation. So just, Todd, again, a question for you, how many Australian children and youth are living with cancer right now? Do you have that number?
Todd Prees 15:34
Well, we know from some statistics suggest that amongst 0- to 14-year-olds, there’s roughly 750 cases diagnosed every year. So, we extrapolate that out to 0 to 18, for children, and we think that that number is around about 1000 children every year diagnosed with cancer in Australia.
So, it’s a significant number. We know that there are high cases of leukemias in that range, and that we also know that it’s the central nervous system type cancers, brain or bone cancers that are the highest mortality rates for children. So, cancer is significant, it’s a significant problem for Australia, it’s a significant problem to solve. Because it is the highest killer of children in that age bracket and needs need significant resourcing to make a difference in this space.
Megan Gilmour 16:41
Yes, it’s definitely a big problem, if you look at the long-term sequela as Danielle was mentioning there. Even if you’re in a cure situation, there’s all of those ongoing issues that a child or young person faces, from their treatments, physically, but also psychologically and socially and emotionally. So, Danielle, you’ve already spoken about some of these, but could you just touch on some of the complications that kids with cancer face in terms of their treatment and daily life around that?
Danielle Smith 17:34
Yes. So, William was very unlucky in the fact that his treatments made him very ill. One of the oncologists at the hospital ended up putting an email out worldwide to say, this is what’s happening to this seven-year-old child at the time, and the responses he got back were, the way he was with his illness, was like he was much older. So, they had to then change his protocol to help him.
So, for the first sort of 12 months with William, he was very, very sick, and was that child, like you said that is in bed and can’t get up and spent a majority – I would probably say off the top of my head easily 80% – of the first 12 months in hospital bed bound. And so, that put a strain on him with school.
A lot of the times when we would engage with the school to do, you know, live feeds to the classroom or whatever – and his primary school was brilliant in what they helped engage him with – but a lot of the times he was too sick to take part. So, we would have something set up, but then we would, you know, end up sedating him to sleep through the afternoon or something like that.
Socially as well, because he’s not at school, making friends, having those face-to-face connections, that was really tough for him too. Because when he then felt well enough to spend a day at school: Where does he go? Who does he sit with? Who does he play with? And I guess when you’re like that, and any child with any illness or trauma that sits in the background for them, they end up having that rapport with teachers, because they can’t find that rapport with their peers. So that’s really tough as well.
Megan Gilmour 19:34
Yes
Danielle Smith 19:35
So that’s really tough as well. Yeah.
Megan Gilmour 19:37
Yes, it’s a really rough gig, isn’t it? You’re reminding me of some parts of my own journey there. When my son went back to school after two years of missed school, he could only speak to the teachers. They grow up so fast, but in other ways they’re not having their full developmental experiences either.
Danielle Smith 20:06
Absolutely, yes.
Megan Gilmour 20:09
And, and Danielle, what about William’s siblings.
Danielle Smith 20:15
So, when William was diagnosed his elder brother was in Year 12. So that was huge for us to try and get him through that as well. His sister was probably nine or 10, off the top of my head. And they both handled it completely differently. His brother was more than happy to be with his own mates and his own peers, because he found it hard to be in the hospital, but my daughter found it hard to be at school or with peers, she wanted to be with myself and William. So, two very different children trying to navigate very different systems.
However, when it came to talking to the high school about, you know, the needs for them, because as a sibling, I think it’s hard because they see it, and they can understand it, but the emotion that sits behind them, and when they have that emotion, they’re not thinking clearly, and they can’t recall logically, and all of those sorts of things.
So that was, that was really tough for us. I know, there was one HSC exams that I called the school and said to the Principal, I need you to pull Harrison out of this, I’m telling you, he can’t sit this exam, he he’ll just sit there and write his name on the exam, pretty much, like he’s not going to be able to code, which they did.
But even for them socially, because they grow up way too fast. So, they’re emotionally a lot more mature than their peers. So, when you know my daughter’s friends were bickering, she just couldn’t understand it, she couldn’t relate to it, she just wanted to be with like-minded people. So, all of those sorts of things really affect them, too. And I think, especially with teenage kids, they go into protection mode to protect mum and dad, they don’t want us to know that they’re upset, or that they’re struggling. So, they try and take on a role that’s not their role in the family to take, but you can understand why they do it. Yes, so both of them missed a lot of school as well.
Megan Gilmour 22:34
Yes. And I’m hearing that even when they were at school, they might not have been there.
Danielle Smith 22:41
Correct
Megan Gilmour 22:43
Yes, you’re right. It’s so complex for the siblings and how they personally navigate that, and then as a parent, also trying to be a parent to all of your children while this is going on. So, I just want to call that out as well, and really shine a light on siblings, because often they are in the background, through no fault of anyone’s, it’s just circumstantial, and they’re going through their own life changing experience.
Danielle Smith 23:21
Yes. I remember having a conversation with one of the high school teachers, and they couldn’t get their head around why my kids were struggling so much, because they weren’t the ones that were going through treatment.
And I just remember getting really angry, and thinking they’ve lost control of their life, that little they could control, they’ve lost that as well. And they don’t know what tomorrow looks like, or what next week looks like, and asking them to sit this assessment or do this exam is completely incorrect for them. There needs to be another way to do it.
Megan Gilmour 23:57
Yes, and thanks for raising that because it’s something that I need to put in something I’m writing at the moment, because we talk about adjustments for the student, the child, the young person with health, circumstances, but then no adjustments are being made for their siblings.
It’s why these conversations are so important because it’s hard for people who haven’t been through this. It’s not just the cancer journey, but any critical chronic illness situation that involves complex medical treatments and family disruption, disruption to work, disruption to life, disruption to parenting, is actually traumatic for siblings, as well as the child who’s going through it.
We’re seeing a lot of discussion now in the education environment in our country and overseas as well, about trauma from a public health crisis -COVID, but what’s not being talked about is the personal health crisis and the trauma that’s associated with that, and how that impacts participation in life and for children’s school and their relationship to school. So, I just want to plug that in there and make a note for myself as well.
Todd, there’s about 4 million school students in Australia, do you have an idea of the current population of school aged children who have been affected by cancer?
Todd Prees 25:45
Well, we know that every year, of those 1000 or so children that are diagnosed, we know that extrapolates to about 5600 children across Australia who are on active treatment. So that’s either undertaking chemotherapy or radiotherapy sessions or, or still as part of their phases of cancer treatment. And that’s a significant number.
And when you then have, as we said, the siblings, the families, the carers that have to make arrangements to meet that treatment schedule, we talk about thousands and thousands of people in the community that are affected by the cancer treatment.
As part of our services and programs that we provide at the Kids with Cancer Foundation, we link in directly with families who hit financial pressure as a result of a cancer diagnosis. It’s often the case that one or both parents have to change their work arrangements because of that primary caring for the child.
And Danielle said there’s all sorts of pressure, it’s not only the medical diagnosis, it’s then those secondary pressures, the financial pressure, the social and community isolation, there’s impacts on not only the core family, but marriages, there’s then the secondary level, which is all of the extended family, the communities at school, at sporting organisations that all, I guess, take strain as a result of that.
And, you know, if you’re from Northwest New South Wales, again, you’re traveling to centers like Sydney, or Newcastle for treatment. And that in itself is, is an undertaking, because there’s got to be accommodation that is provided here in Sydney, for long, long treatment times.
So, it’s a constant and growing concern for us. We’re helping hundreds of families every year financially, just to get through and to make it to treatment.
Megan Gilmour 28:18
Yes, indeed. You mentioned, when we were doing our pre-call set up, that organisations like Kids with Cancer Foundation are providing a large amount of contribution to the medical and healthcare setting, in hospitals, outside of hospitals. I’d like you – if you would – just to speak to that a little bit, because it is a significant contribution, that supports government, actually.
Todd Prees 28:58
You know, that was probably the most eye-opening moment for me in my first months, as CEO of the Kids with Cancer Foundation. I got to visit a number of the oncology hospitals around Australia, and the recurring theme was how much charity and philanthropy supports the delivery of clinical care in these hospitals. That was extraordinary for me to see.
And there’s other great organisations that just deliver that standard of care that we’ve come to expect. But the realisation is that without charity, and without that additional level of care, the standard of clinical care that’s provided would be less. The governments cannot provide all of the funding to maintain that level of care and that’s why it’s so important for Kids with Cancer to keep pushing in. We can’t do that without our supporters providing the funding that is needed for that.
Currently, we’re providing 19 clinical positions across Australia; they are oncology fellows, they are social workers, welfare officers, clinical nurse consultants. These are the frontline people that provide not only clinical care, but social care for families going through a cancer diagnosis. So, we’re very, very proud of that impact that we make, and again, that can’t happen without the support of our donors and core partners who provide that funding
Megan Gilmour 30:43
Indeed, and then there’s research contributions that go into cures and clinical improvements in clinical treatment and protocols, and all of that sort of stuff as well. They are major contributions.
Todd Prees 30:58
We’re particularly deep in a world-first clinical trial that was initiated through the Sydney Children’s Hospital in their Cancer Center for Children for a trial of a drug that’s been developed here in Australia, which is treating or trying to treat the most difficult of brain cancers.
Megan Gilmour 31:25
Is this Dr. Ziegler?
Todd Prees 31:27
Yes, Dr. David Ziegler, and Dr. Mary-Ann Mathias, yes, at Sydney Children’s Hospital at Randwick are the lead medical researchers of this trial.
Megan Gilmour 31:36
Yes. Dr Ziegler was one of my son’s doctors, he was on our team. He was with Professor Cohn who just retired.
Todd Prees 31:48
David’s a tremendous fellow. And we’ve seen in videos and images of his bedside manner, I think that there can’t be any one that’s better suited to caring for children with the most difficult of diagnosis. So, this trial that we’re funding is $1.3 million over five years, and where we’re hoping that that makes a significant impact on – not really livability because these cancers when they relapse are terminal diagnoses, sadly – so this treatment is prolonging life and seems to be trialing the efficacy of that dosage for kids with a particular brain cancer that’s very, very nasty.
Megan Gilmour 32:46
Yes, I think I know the one that you mean. And without this kind of funding, and without this kind of contribution, there wouldn’t ever be cures, because there just wouldn’t be enough innovation in health care getting pushed through and driven through for these rare cancers. So just a shout out to your work in that respect. That definitely makes a difference.
Todd Prees 33:18
One of the key things I’ll just add Megan there, which is true to our topic today about schooling, and missing school, the wonderful thing about this treatment, the way it’s delivered, has meant that it can be done in home settings. It doesn’t have to be done at the hospital.
So, there is an element of initial setup for that to be delivered in the hospital, but then the patient can go home and just spend as much time as possible at home. And it’s a simple pump system that’s providing that drug protocol and look, we know that getting kids home is far better than having them stay in hospital. They’re there with family and they are there with their pets.
Megan Gilmour 34:06
Yes, they just want to be at home – at home and at school. That’s what I heard every day. When can I go on gate leave? They just want to get out of there. Yes, it’s a problem when they want to stay in there, which is what ended up happening to my son, he became so institutionalised for a time there. But it’s great being able to deliver those services in the family home is just incredible, right? That’s a quality-of-life contribution, it’s making a difference to quality of life.
Todd Prees 34:46
One of the last things that that we’ve done, and this isn’t necessarily about the Kids with Cancer Foundation, but it talks to how we’re funding or trying to make a difference for kids. We recently announced a $10 million pledge, which is going to contribute to the fit out of the new hospital at Westmead for children, and that will be across levels 10 and 11, and fill out the whole oncology level of care there.
So, we know that those spaces have had tremendous consideration in planning, there’s been a lot of consultation with families, to work out what the best use of those spaces are, how to best, you know, I guess, keep some of the treatments for children a little bit separate to the treatment for teenagers, because of their different stages.
The rooms have been designed to try and provide that wraparound care for an individual child but give them a space for learning. So, the design of the rooms includes a desk that can also be used by mum or dad, if they’re having to remote work, there’s a much more comfortable bed.
Megan Gilmour 36:09
More contemporary approaches and thinking about space and how space can be used to create ease,
Todd Prees 36:17
And even the light, like even consideration in design where these new spaces are light filled, so that there’s natural light that floods in, so the positioning of the building and the way it’s been designed is to capture as much of that for as long as the day as possible.
Megan Gilmour 36:33
Yes, rather than the fluorescent lights, sitting under the fluorescent lights for 24 hours.
Todd Prees 36:40
Yes. So, what will happen in 2025, is that two of these hospitals in Sydney will come online, first Randwick, the Sydney Children’s Hospital at Randwick, and then later, the Children’s Hospital at Westmead. And as well as the 10 million that we pledged into Westmead redevelopment; we also pledged another half a million dollars to help fund special places for families. So, these are for oncology families to be able to break out and go and just sit or be
Megan Gilmour 37:13
Go somewhere other than the ward.
Todd Prees 37:15
That’s right. Or maybe there’ll be a barbecue there on an outside area where they can actually do something just to be a family, away from the Ward setting. So, we’re excited about that. That’s an eight-year undertaking for us as a charity, but for us to be able to contribute that on behalf of our supporters, that will lead to transformational care for the next 30 years, the life of that building, and that will see thousands and thousands of families come through that unit. So, it’s an exciting milestone for us. It’s our largest gift in history.
Megan Gilmour 37:54
Oh, that’s amazing. Congratulations, for all of the work that gets you to that moment, right, these announcements have years and years and years of work, and day to day choices and efforts. So, most people just see the announcement, and I just want to acknowledge all the time at the desk at the thinking time and you know, back and forward. So important.
Todd Prees 38:24
Yes, and our board and directors like Danielle that helped bring about that vision, but also the reality that we can do this. We mostly just respond to need. We align all of our program giving in response to meet the need.
Megan Gilmour 38:45
You follow the need.
Todd Prees 38:47
That’s right. So, we felt that this was the best use of this funding, to position Westmead for care for the next 30 years.
Megan Gilmour 38:59
Yes, remarkable. Let’s dive a little deeper into the school component. We’ve touched on that and we’re almost at the end here. So, Danielle, do kids with cancer currently, as you understand, miss a lot of school. And if so, why?
Danielle Smith 39:21
Absolutely. Absolutely. Look, as a general rule, yes. I do know of some school aged children that went through their treatment plans and protocols, and still were able to have a good engagement at school. And then when they weren’t at school doing all the hospital school programs and things like that.
But generally, yes, most of the time they’re too sick or you know their immune systems too low, their white cell counts too low, their neutrophils are too low, all of those sorts of things that stop them from being out in the public. So generally, yes, I would say they’re missing a lot of time.
And, you could have somebody from one of the hospital staff teachers come in and spend that hour with them a day, but what they miss in that classroom environment, especially at a young age, for me is priceless. They’re never going to get that back; they’re never going to have that interaction. I guess it’s probably a little bit easier for older children, that are already socially up and going and know where they’re their place is in life at that point in time. But then they’re missing again, that classroom environment, bouncing ideas, talking, open discussions, all of those sorts of things.
Megan Gilmour 41:00
Yes, absolutely. And that’s why MissingSchool exists, is that my son, that’s all he talked about. So, let’s, let’s be honest, here, these kids are not really agreeing to these treatments, they have to have them. And they just want to be normal. They just want to play, they just want to be able to do the things that kids do, and that’s taken away from them.
So why MissingSchool exists is because my son, at a point in time in his treatment, I could see him giving up, it was a very difficult time, he wasn’t getting better. And I just thought, how can I give him hope, basically, the only thing I could really think of was to try and connect him to school. And I found it extraordinarily hard to do and extraordinarily hard to make that happen.
You named some of the things at the beginning [Danielle]. Even the times that we could set up a Skype call back in 2010, with a clunky laptop, some of those times he couldn’t even make it, you know, but then the times when he could make it, sometimes nobody would turn up. And, you know, I’d have to leave the room and cry, so I didn’t show him my disappointment at that.
So, it just occurred to me that this must be happening to kids across Australia at the time, and MissingSchool started with three mums whose sons had bone marrow transplants. So, noticing that they were different ages and stages and all sorts of things, but that the one common thing that was most important after the illness itself and the treatment, was school.
So, what from your perspective, are the critical times in school life for a kid with cancer?
Danielle Smith 43:15
I think it depends on their ages, and it somewhat depends on the protocol that they’re going through and how they respond to the protocol, and how well they do through that.
I don’t know if there’s a right or wrong answer there because I think it’s all relevant right? Whether you’re a five-year-old child or a 17-year-old sitting HSC, it has different effects, but they need to be there. More so probably for the younger ones, it’s the socialising, but then the older ones need the socialising to get their strength and know that they’re still loved and supported by their peers.
Megan Gilmour 44:02
Belonging
Danielle Smith 44:05
Yes. So, I don’t know if there’s a particular right answer there because I would say it’s across the board. Just to touch on what we were talking about before, and I think you’ve both touched on it in regard to siblings and their time away from school.
For us it snowballed, it wasn’t just siblings. William was the youngest of 10 grandchildren, and we were very close knit all the cousins, you know, his cousins were very close knit. So, it even extended to that, that if one of his cousins weren’t doing well, emotionally, well, then they would just have the day off school and come and spend the time with him in the hospital, like it was whatever they needed.
He did have a very close friend at school that often would come in as well and just spend some time with him. So, but we decided to take that as a holistic approach, that if their mental and their emotional health aren’t managing, or if William put a call out there “I’ve been in hospital now for five days, and I need someone to help and come in and play somewhat”, then yes cousins, it wasn’t just siblings, it was cousins and friends that were taken and missing school that day as well.
Megan Gilmour 45:17
Yes, that’s an interesting perspective, and I haven’t heard that one come up, and I’ve looked at this for over 12 years from so many angles. The angle I’d never seen before, was – peers or cousins or family – siblings, for sure – but other kids, let’s call them peers as a category, who are coming to spend time with them, and their missed school, perhaps, but also their journey. And Todd, you did touch on this in terms of that – that network and that community around the child, the young person, extends in layers and layers out. So, this is a really important point to pick up here.
And I felt a bit cheeky when I asked that last question, because the immediate answer that I gave myself as to what the critical times in a kid with cancer’s school life are – I just wanted to burst in and say, every day, yeah, every moment of every day.
Todd Prees 46:29
I think it’s fairly obvious that as human beings we’re designed for relationship.
Megan Gilmour 46:35
Absolutely
Todd Prees 46:37
And I don’t think that anyone would dispute – and I’m not an expert in this area – but I think learning happens better together. I think COVID-19 will be an example of what we’ll learn from isolation, where it’s not optimal – it’s better together. Those questions that get asked by a peer, or a classmate, are often the things that might prompt that learning or that thinking for someone else. And so, if you’re just expected to do it on your own, and without that connection, the experience will not be as optimal.
Megan Gilmour 47:18
That’s right. Simply sending worksheets home to a child who’s already struggling, that’s not learning, or a way to learn that anyone would expect for even a child who isn’t facing a serious health challenge.
I’ll just drop in here, too, that the World Health Organization has an international global agenda now of combating social isolation, because the evidence is that social isolation is incredibly detrimental to physical health. So, there’s data to show that connection, so it’s not only not good, emotionally and mentally, but it can have positive impacts on physical wellness as well.
So, when I add those two things together for the kids were talking about it’s a social prescription, to have school connection and social connection happening. And that play that you talked about Danielle with cousins and being able to just forget about the cancer and have some fun, do some gaming or whatever is possible in that moment, is so important.
And I’ll also just mention now, because when we ask the question about do kids with cancer miss a lot of school, the catchphrase is ‘there’s no safe threshold for absence from school’. Anything more than 10% of school missed, which is five days per school term, is problematic. So not just five days once, but those prolonged absences or recurring absences.
You can see why these kids face challenges when they’re back at school, even if that’s back at school, between treatments. They’re trying to then deal with catching up. Which is why MissingSchool has been putting technology in classrooms, so that kids have been able to connect in real time – this is including kids with cancer, and all sorts of other illnesses – and they can dial in and be there.
Be seen and heard, see and hear, and get their lessons in real time when they can, and also play and be involved in, yes, social connection, but also social opportunities: it could be rites of passage, it could be attending an assembly, we’ve had students go to their formal. The technology has been there and the formal so that they can be involved in that moment. Because it’s not all about reading, writing and arithmetic. It’s also about belonging in a community and being able to have those rites of passage that we all want and need in our journey.
So, another question here, before we go into the last ones, which is, what should families and schools be prepared for at different times? And maybe this feeds in Danielle and Todd with the question following it, which is, what are the biggest challenges or vulnerabilities facing kids with cancer at school? So, the combo of those would be, what are those challenges and vulnerabilities at school, and therefore, what should schools know and be prepared for?
Todd Prees 51:23
I don’t know, and don’t have a lived experience, so I’m hypothesising here. But I think confidence is already going to be extremely low for a child that’s missed a lot of school. And we talked about that, with that opportunity for learning comes and that’s what builds confidence, seeing what others are doing, having an opportunity to speak and to be heard.
So, I think that schools need to be acutely aware that there’s already going to be a low baseline here that there’s got to be an over overcorrection, if you will, of support and community that’s put around, and opportunity. I think that there are tremendous resources that are now becoming available that will speak to this, and others in our space do this very well. But yes, I think that the community that gathers around this child can have that extra special feeling of support.
We have a program called Wigs for Kids, and it’s just a lovely story where, once you’re on treatment, the opportunity to be able to shave your own hair and have that used in a wig is lost. We had a story once that’s always remained with me, is that a child in primary school, shaving her own hair, to be made into a wig for her best friend. And you know, we just love being a part of that, that there’s obviously care in the community, and when you see it in action, it’s extremely heartwarming. Danielle, you might have some other interesting parts to play with your background in, in school life, and how the school can support?
Danielle Smith 53:36
Yes, I think the biggest, which is going to sound funny, but the biggest thing that the schools can do is educate themselves as to what’s going on for that child, that student, and seeking out the answers that will help.
As Todd just mentioned, hair is one factor. Well, these children with cancer come to school, and they look completely different, and we know that’s an instant target on your back when you’re in a school environment and you look different, and you do things differently.
And there probably are special circumstances for them. Like my son couldn’t use the main toilets, he had to go and use the teachers, the staff room toilets, and he would get questioned on things like that.
So, it’s just all those little things I think the school can be prepared for, and not only educate themselves, but educate the community that they have, so the parents as well as the other students at the school. And, I guess, expect the unexpected, because if they think they’ve got everything covered, it’s like a normal school environment, right, something else is going to be thrown into the mix.
But for the students themselves, that whole sense of belonging and having a place in whatever setting they’re in, I think they lose that and to be able to regain that in a controlled but safe way for them, I think is huge for the student itself.
Megan Gilmour 55:13
Yes, yes indeed. And that safety factor, so having parents getting health plans in place at the school, which include those things to look out for. You mentioned earlier too that kids with cancer are immunocompromised. So, there’s got to be hyper vigilance around those sorts of factors as well.
Danielle Smith 55:41
And these students all return to school with a central line. So, you know, that fear is a parent that they’re just going do one thing. I mean, I was quite lucky Will didn’t actually want to go out and play footy and rough and tough because he, you know, just didn’t have the energy. But I know of kids that did and as their mother, I would be freaking out that that central line is going to be pulled, and you know, all those little things.
Megan Gilmour 56:09
All the things I’ve forgotten about. Yes. I remember Darcy had low platelets, and he got punched in the nose, and I remember them calling me up and saying, there’s so much blood come down here.
Those things that might happen in a school yard normally just become quite terrifying. I think this is the other thing, is that these kids, also, they’ve experienced complex trauma, through their treatment and what’s going on for them, which includes watching their family have anxiety, watching, knowing and they do develop that hyper vigilance for their family too, my son did. They’re just acutely aware of everything that’s going on around them.
So, getting schools to understand that that trauma that’s going on, and that anxiety that can be going on and playing under the surface there at all times, as they not only deal with their condition, their treatment, the effects that it’s had on their socialisation and development…
But then transitioning back in and out of school, as you touched on earlier, Danielle, where are my friends? Where do I fit in? As well as the academic aspects of being engaged in school and just trying to get to grips with that when you’ve missed so much school. What do you think schools could do to make it better in the future Danielle?
Danielle Smith 57:58
I really think the school setting – as in the school setting when the students aren’t at school – needs to probably be that little bit more holistic and individualised. I think sometimes, and we do it in normal school settings, right, we say that you’re in this classroom, and this is the way you’re going to be taught, this is the way that you’re going to learn. And that doesn’t suit everybody.
I think that by having a student that’s out of school for a long period of time, to be able to look at what best suits this student? How is it that they’re best going to learn? Because you will have students that are quite happy to sit and read out of a textbook while there and still flourish and do really well with that, but then you’re going to have students that, you know, need the social aspect to go alongside it. So, I think looking at it, not so much putting everybody in the same box, and just pulling it apart a little bit. And being a little bit flexible on what’s best for that student.
Megan Gilmour 59:00
And I’m hoping this episode will be so valuable for teachers who will be able to view it or read the transcript. Some of the things that you’re talking about there in terms of familiarisation, that’s what we’re trying to achieve here, is to get the quickest possible information into the hands of teachers at the moment that they need that information, or they need that support.
I just wanted to say here we have provided our technologies to kids who are in end-of-life stage and the fact that they want to be at school and connecting to school at that time, tells us what’s important to kids. And it’s been a privilege to be able to do that for them.
Is there anything else that you want us to know, before we give you the very last question, is there anything else that we’ve missed or that you’d love the audience to know about, anything we’ve talked about today or anything you might have missed?
Todd Prees 1:00:14
We’ve done really well with this challenge, I think.
If there’s can be one final suggestion, it’s to just consider the care. Philanthropy is really the language of care. It’s responding to need, even when you don’t know or have a relationship with someone else. And so, so much of our society’s is, is based on that, that level of care. And the encouraging part is that for people that have that awful experience of a child with a cancer diagnosis, there is a surrounding element of care that is available, from people that don’t even know you, that are prepared to just step in and provide services and provide help.
In the school setting, I think we’ve suggested there’s probably more to be done. And it needs to be tailored for individual kids; their journeys are not the same. It needs to be – as Danielle said – a holistic response. We know that kids that do well in clinical treatment are the ones who’ve got the love of their families and everything staying together in the family home. They’ve got the love of the community, they’ve got that sense of connectedness, they’re not feeling isolated.
So, to your point before Megan, we know that there’s an impact on health outcomes at stake here. So, this has been tremendous to be able to have this conversation
Megan Gilmour 1:02:03
It has. I want to give a plug to the Kids with Cancer Foundation, and anyone out there who’s listening to this call, give, give generously, and support the Kids with Cancer Foundation and the amazing work that the team there is doing, and all of the supporters are doing. Where will people find you, Todd?
Todd Prees 1:02:35
Yes, its www.kidswithcancer.org.au. There’s a major website there that you can traverse all of the information about our programs and services, but also how you could connect with us how, and how we can use your support to make today easier for kids with cancer and their families. And that’s why we exist.
Megan Gilmour 1:02:57
Fantastic. The last thing is a call to action. Either one of you can do it. What’s your call to action for kids with cancer in seven words or less,
Todd Prees 1:03:19
Help us make today easier for kids with cancer.
Megan Gilmour 1:03:24
That’s amazing. Well, it’s been a wonderful opportunity that you’ve given us today. The opportunity of your time, of course, but also the opportunity to benefit from the work that you’re doing. And your lived experiences, one professionally, one personally, and to see the way that that comes together for kids who are facing the toughest times and to allow them to be seen and heard and make their lives better. And Danielle I’d like to dedicate this episode to William. I know how proud he’d be of his mum for continuing his legacy through your work.
Todd Prees 1:04:25
Yes, absolutely. And we constantly have these moments where we share with Danielle and our board and we say, you know, William is here amongst this work that we’re doing because that experience has been what has shaped and what has helped form some of our decision making, and we exist for him. We exist for families, like the Smiths, and it’s a privilege.
Megan Gilmour 1:04:59
Thank you so much. As someone who spent a lot of time on a cancer ward my message is to anyone who’s listening, especially teachers and schools, these kids fight so hard. And we need to make sure that they can have a life worth living and that fight matters.
So, we hope the information that we’ve shared today will enable people out there to innovate, contribute, bring their own gifts to the forefront to make better days for kids with cancer, and for cures, and one day, to see the goal that Todd mentioned in the beginning, which is, what was it again, Todd
Todd Prees 1:05:57
For a day where cancer diagnosis is an unremarkable event in life.
Megan Gilmour 1:06:04
That’s a great note to end on. Thank you so much.
Megan Gilmour 1:06:09
Thanks, everyone, for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment or leave us a review because we love hearing from you. And if you want to donate head to www.missingschool.org.au, because every dollar makes a difference
View the episode here.
