RECORDED: Friday 20 March 2026
SUMMARY KEYWORDS: Childhood brain cancer, school connection, Peace of Mind Foundation, inclusive education, medical system, long-term impact, cognitive side effects, social network, sibling impact, school attendance, learning plans, transition challenges, teacher training, government support, quality of life.
SPEAKERS: Megan Gilmour, Allison Cooke
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.
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.
And today on Live & Learn, we have Allison Cooke. Allison is an ambassador for the Peace of Mind Foundation, a mum of three, and parent to a daughter living with a brain stem ganglioglioma. For the past seven years, she has navigated medical and education systems while advocating for her child’s wellbeing and inclusion.
With 20 years in education, registration as a behaviour support practitioner, and postgraduate studies in counselling and psychology, Allison brings both professional insight and lived experience to advocating for inclusive, flexible schooling. Welcome Allison, we’re so excited to have you on Live & Learn.
Allison Cooke 01:46
Thank you, thank you for having me.
Megan Gilmour 01:49
Absolute pleasure. So today we’re here to talk about supporting school connection for kids, students with complex medical and/or mental health conditions. So, let’s jump into the first question.
Allison, tell us how childhood brain cancer impacts kids, and why it’s something every Australian needs to know and care about.
Allison Cooke 02:12
Brain cancer is a really insidious disease. The statistics around it are pretty shocking. So, of our young people, our cohort of children, we have to remember they’re very different to our adult cohort of brain cancer.
So, the reality is 23% of our children survive past five years. And so, the impact in our schooling systems, in our families is massive. And, you know, I think it could be a really scary statistic, unfortunately, and one that hopefully we see change in the future.
Megan Gilmour 02:57
What a way to start. So let me, let me check that I heard that only 23% of children with brain cancer survive past five years
Allison Cooke 03:12
Five years. Yes. And it is a really shocking statistic.
So, what we know is that every nine days, a young person in Australia, so a child and an adolescent succumbs to the disease. So, it has this massive impact. But then we have these young people that are surviving and the flow on to that is that they go back to school.
And that’s, you know, how do we help them? How do we help them navigate those challenges as they get back into the education system?
Megan Gilmour 03:44
Yes, because certainly they deserve everything that is available to them. And this is every nine days. So that’s really something for everyone to hold here just how important it is for these kids while they’re surviving, and yes, just while they’re surviving.
Allison Cooke 04:10
100%. And I think it’s probably one of the things that we forget as our children go through their treatment and return back to school is that there’s this long-term kind of monitoring of them and long-term experience for them within the medical system.
So that impacts their ability to attend school. It impacts their ability to engage in activities or attend, you know, camps because they happen. But not only that, there’s that gaps of learning that they miss along the way. So, yes, there’s lots of little hidden costs to brain cancer in our childhood population.
Megan Gilmour 04:52
Indeed. And at the outset of this, I also want to acknowledge that just over 75% of kids who don’t make it and how important it is for them in their journey, to be connected and remain connected. And that, I don’t think anyone would think, but well, why does it matter? Why does school matter? It matters a lot. And I know we’re going to talk about this.
Allison Cooke 05:21
Yes. Yes. 100%. It matters a lot.
Megan Gilmour 05:24
Yes. So many people probably assume things about childhood brain cancer. What’s the million-dollar question that you get from parents or loved ones when their child experiences or is diagnosed with childhood brain cancer?
Allison Cooke 05:39
I think there’s a couple. So, the first one usually is, you know, what does survival look like? Is my child going to survive? That’s usually the first question that comes out of every parent’s mouth at this diagnosis.
I think the one that follows after that is what does my child’s future look like? And then it’s that period of how do we do this? How do we navigate this?
Megan Gilmour 06:03
Yes. Unsurprising – whatever condition it is that we’re talking about on these calls, I’m always reminded of the common lived experience and the common humanity that comes straight to the surface right away. It’s those two questions – it’s nearly always the same questions.
So, what’s the most important thing, Allison, that you want them to know?
Allison Cooke 06:36
I think the most important thing I want them to know, because I think it would have been helpful for me as we navigated my daughter’s journey, is that there’s actually support out there to help you with those questions. And it’s probably something that we really want parents to know, that there’s organisations that can support them.
So, Peace of Mind Foundation is one of those that navigate through, what does this look like? How do I access things like NDIS? How do we move forward in the future?
And I really wish I had realised that at the time. And I know there are foundations that are really focused on research, but those ones that kind of come and stand next to you and navigate that journey.
You know, these are the places you can go, or this is the stuff at Centrelink you can access. Or when they go back to school, this might be some of the stuff that you need to navigate. I think for me, it would have been really helpful to have known that.
I think the other thing is it’s okay to grieve. So, it’s okay to grieve the change. Because a brain cancer diagnosis changes so much in your life. It changes your normal, changes your routines, changes your relationships with people.
But it also changes lots for your own kids. You know, if you’ve got other children, it changes for them as well. And it’s okay to grieve that change.
And you do develop a new normal. It’s not the same. It’s different. You have a completely different set of skills that you acquire. But it’s also okay to go, huh, this is not what I thought this would be like.
Megan Gilmour 08:22
That’s an important message there. And the first one is – there is help, and the second one is that how would you know how to navigate this without people who know what the playbook is, recognising that every journey is individual in that.
And of course, that vital last one is that you’re grieving the loss of your well child, grieving for a future and a life that you believed you had. And I am totally with you on that.
And often, I know my journey with my son, it was a social worker who said that to me one day. And she said, what’s happening to you right now is that you’re grieving the loss of your normal life.
And it’s so interesting, because as soon as someone tells you, or shares with you what’s happening to you at that stage, it just changes everything. It’s like you say, the knowledge – it’s that knowing that navigation.
Allison Cooke 09:41
Yes, it is. It is. And for us, yes, for us, I think it our Peace of Mind navigator [who] was the one that said to me, ‘It’s okay. It’s okay to be struggling to accept that your child now has to use a wheelchair to make sure she can get through the day.’
‘It’s okay that your child who loved all the sports, you know, is now just on a slightly different pathway. She’s a para-athlete, and she rocks it, she owns it, you know, but it’s okay to go that’s really tricky for me to digest and process.
Megan Gilmour 10:15
Oh, for sure. Yes, there’s just so much in what you’re saying. And I know that as we go on through this conversation, more of these examples are going to come up.
So, Allison, we’d also love to know if you’re willing to share some insight into this, what brought you into the world of childhood brain cancer?
Allison Cooke 10:38
Yes, so my daughter, my middle child, so I’ve got three, I have a small man child is what I’m referring to him as because he’s taller than me. So, I have a 14-year-old and, and I have Emily, who is my 12-year-old. Although I’ve just decided she’s hit teenage kind of early, because we’re getting a bit of attitude. And then I have a very, very beautiful 10-year-old Hannah.
And so, we were living in Sydney, when we were going through it, we’d actually moved, which was really cool from Victoria, Sydney, I liked the weather a bit better up there.
And, Em [Emily] went through, which is not uncommon in the brain cancer world, to preface this, Em went through a period of time, and for her, it was a long period of time. So, she had 18 months, where we had progressive symptomology from her with her swallow, her speech, her walking, so losing her coordination.
And the paediatricians, they heard us, they probably just didn’t share our level of concern, and that’s okay. And we walked into an appointment in the April of 2018. And the paediatrician looked at us and went, ‘Okay, I think we need to send you to a neurologist, she really needs to have a scan’, because we just got to this point where she couldn’t walk in a straight line, which was something she could do, you know, the appointment before.
And so, we kind of, we put it off to the neurologist, and we went for a non-urgent MRI, which was in the October, so quite a period of time. And we got a phone call the following day at 9am, saying we’re so sorry, there’s a lesion, it’s in her brain stem. And that kind of brought us into this world.
And we’ve kind of just journeyed through the highs and lows, because there are highs and lows of that diagnosis.
Megan Gilmour 12:31
Yes. Thank you for sharing that. And I know, as I keep saying, we’re going to, this is going to unfold in our conversation. Highs and lows, yes. They’re the extremes, aren’t they?
Allison Cooke 12:49
They are the extremes, 100%. You know, there’s that real low of what does this mean for my child, through to that first time where you ring the bell and go, look, look where we’re at, you know. And then that low of relapse and, you know, that kind of thing.
And it’s something for us as a family, and not every family goes through progression, not every family goes through that kind of relapse cycle. But unfortunately for us, it’s a space we sit in, because Emily’s tumour can’t be removed.
So, the brain stem is obviously our kind of motor centre, we can’t survive without it. So, we have to be very careful with the way we manage her tumour. And so, there’s that real high of saying, hey, look where we’re at, she’s super stable, we don’t have to do more chemo, to that low of, oh my goodness, we’re about to do open brain surgery, and all the in between.
Megan Gilmour 13:45
Yes. And the mountains they climb, these kids.
Allison Cooke 13:51
100%. So, Em, you know – and I’m a proud mama bear of my children, all my children, not just Em, you know – like two weeks, well, it’s not even a week. Oh, yes, it’s two weeks ago, Em did a week in hospital.
So, the current treatment protocol she’s on affects the way that her body kind of, her skin, so it’s got lots of skin toxicity, is the best way to describe it. And that kid can grow a staph infection like no tomorrow.
So, she did a week in hospital, IV antibiotics, convinced the doctors to swap her to orals, and then went off to little athletics, state championships and brought home three medals.
Like, you know, it’s, yes, they do, they climb those mountains, and they ride those highs and lows.
Megan Gilmour 14:36
Yes, the resilience, right? I mean, yes. You know, people have struggled coming off a flu or a cold to do that. And here they are.
And I also just want to highlight, you know, this is why we’re having this conversation about school and education. Their fight, you know, we need to make sure their fight is worth it, because they fight so hard.
So, knowing all that you know, what’s your biggest hope for kids with childhood brain cancer, their families and their loved ones when navigating this condition?
Allison Cooke 15:18
Yes, I think I actually have a couple. I know we’re supposed to have one, but I have a couple of really big hopes. One is our statistics change. One is our kids are starting to live longer, survive more. I think that’s my greatest hope for everyone.
My other hope is that we get more of them back to school, back into their peer environments, back into kind of having that childhood they deserve to have. And I think the other one is that I really, I really hope for the parents that watch this, the extended family members that watch this, they know that there are people out there navigating this as well.
And there are foundations like Peace of Mind that are there to support them, that they actually don’t have to do this alone. Because I think that’s really important.
I know we’re talking school, but I think it that goes hand in hand, knowing that there’s things to support you goes hand in hand with getting our young people back into the learning environment.
Megan Gilmour 16:16
Yes, I couldn’t agree more. It’s such an important prompt for people. And you’re bringing just so much energy to this conversation and so much hope in terms of your posture and attitude.
So I want to acknowledge that and thank you, because that will also be not only an example for people who might be watching and not necessarily have a child, but may know a child, or even teachers or anyone who listens really – to appreciate that hope and optimism that we need to bring to this for the kids and in terms of what their prognosis is.
So, Allison, what are some of the common and perhaps frustrating public misconceptions about childhood brain cancer? And how have you seen this have an impact on families?
Allison Cooke 17:13
Yes, Megan, I think this is probably one, and I know that you’re probably going to identify a little bit with this. It’s the hidden cost, right? It’s the hidden toll.
One of the biggest misconceptions we have in this space is that our kids finish treatment. So, they finish their radiation. They finish their chemotherapy. They’re done. They’re better. They’re no longer in the medical system. They can just go on with life. But actually, that’s not how it unfolds. And I know it’s not how it unfolds for lots of our oncology families.
The long-term side effects of the treatments, the brain surgeries, are actually lasting and many are hidden. So, whether it’s fatigue, so lots of our survivors experience quite significant fatigue. The other is that we see some personality change quite often within the individual.
And that can be really tricky because some people meet them for the first time and that’s just the child they’re meeting. Whereas, actually, that child is really different to the child they were six months ago.
There’s physical kind of side effects. So, there’s often, well, no, I shouldn’t say often because that’s probably speaking a little bit out of turn, there can be physical disabilities or an acquired brain injury that comes out of this treatment phase. And some of that can be really hidden.
And so, I think one of the misconceptions is that once they’re done, they’re better and they just move on. But the reality is they often keep having to go back for appointments. The monitoring is very stringent. They’re still missing a lot of school. They are going to have a lot of absences.
Megan Gilmour 19:02
Yes. Yes. And so great that you talk about this.
I was only thinking about this myself the other day is, we talk about the two-year journey that my son had mostly in the clinical environment. But what I often want to add to that is just all the years that followed and even now into adulthood, again, the highs, the lows.
And the one thing I talk about as well is that at each different age, that young person reprocesses their experience from the perspective of an older person, an older adolescent child, young adult in my son’s case.
And also, has not only those – what medical professionals call long term sequelae from the treatment itself, but also the trauma of the treatment and the trauma of the illness and the pain and all the other things that they experience.
And we know a lot of our young people are experiencing more mental health issues when they don’t have a chronic medical condition.
So, when we combine these factors….
Allison Cook 20:24
Yes. 100%. It’s tricky.
Megan Gilmour 20:27
It is. And you talk about it in relation to school too, and we’ll get into this, that idea that you’re too sick to be at school, we just need to leave you alone. And then you’re back at school, so everything’s fine. And it’s just like neither of those assumptions are correct.
Allison Cooke 20:47
Then they’re really not. They’re really not correct. And I think the other bit in our brain cancer community is that some, not all, some of our children will return back to school and they will still have evidence of disease because they can never not have it.
So, there are young people that might have an optic glioma that they couldn’t remove all of it because it would take their vision or our young people that have brainstem glioma that they can’t surgically remove.
So, there’s also that misconception that, for the better term of the word, they’re cured, but actually they’re still living with so much.
Megan Gilmour 21:25
Yes. And you mentioned too, effects of the treatment. So, there are also permanent injuries caused by high dose chemotherapy and other drugs. My son is completely and profoundly deaf in one ear from one drug given over three days.
Allison Cooke 22:08
Do you know, I actually went looking for that stat, because I can tell you lots of stats about brain cancer because we live in that world, right? You know, and one of the things I couldn’t find, well, there were two things, but one of them was how many are currently in Australia living with it.
I can tell you how many are diagnosed a year. So, 120 kids a year are diagnosed with brain cancer. But in terms of right now, how many Australian young people, so, kids zero to 18 are living with brain cancer. There’s no statistics that I could research up to find that.
So, it’s actually something I’ve made a note of because I think that would be a really great statistic for us to know.
Megan Gilmour 22:49
Yes. Thank you. I’ve tried this just with childhood cancer alone. And then you have to factor for mortality rates. And then you have to work out what percentage of that population is in the school age bracket.
So, because as we’re talking about, you’ve got kids who are diagnosed pre-school. And then during school through every year of schooling, there’ll be more than – let’s say – a hundred odd number coming in every year.
And it’s and I just thought, like you, I’d sit down and work it out. Then I realised, Megan, your mathematics is not up to this. It’s like you have to be an actuarial or something. That’s complex statistics there to try and work out.
Allison Cooke 23:37
I was like, it’s not going to be a me thing that finds that number, but I have a couple of people I might tap and say, can we work this out? Because it’s definitely not a me wheelhouse.
Megan Gilmour 23:48
Yes. And look, suffice to say that every child who survives plus each year, the new diagnosis. So, and we’re speaking specifically about brain cancer right here, but, you know, there’s obviously also other cancers as well.
Now, is there a risk of delayed diagnosis or are most cases of childhood brain cancer picked up easily?
Allison Cooke 24:20
Yes. The short answer to that is there’s often a period of delayed diagnosis. One of the traumas that I know, for me as a parent, and I know other parents have experienced, is that ‘They’re OK. There’s nothing wrong with them. They’re fine.’
I know of a family where the parent kind of was said, oh, maybe you should see a psychologist. You know, we think this is more about you than your child.
So, one of the things about kids is they don’t like to scan them unnecessarily. So, they will look for every other plausible explanation before they put them through a CT or an MRI.
And a line that was used with us post diagnosis of Emily was, ‘You don’t hear hoofs and think zebra. You think horse. However, our brain cancer kids are a bit of a zebra because they actually there is something clinically really, really wrong with them.
And some of the symptomology can be really tricky. So, you know, they might wake in the morning and vomit, but then they’re perfectly fine and go about their day for the rest of the day. And there’s nothing else there.
Or it might be they lose their coordination or they start falling. Or, because brain cancers, there’s two types of kind of grades in our in our brain cancer community. There’s low grade, which is what Em has.
So, Em has a low-grade ganglioglioma, which means that it slowly grows. So that’s why we had such a prolonged period of time, because it wasn’t a hard and fast kind of hit of symptomology.
We then have our high-grade community. And they are young people where in a matter of weeks, the tumour has grown really quickly and rapidly, and their symptomology has progressed rapidly.
So, there can be, for some of our community, though, that diagnosis is really quick, which is great. That’s what we want for our young people.
Megan Gilmour 26:25
Yes, and I guess the ones that are picked up quickly are the more aggressive cancers. So, it’s those I’m not just making an assumption here that those children are probably, as you say, they’re in the high-risk category.
But we need the fast diagnosis for slow growing tumours too, because they are continuing to grow. And that’s, I guess, why that symptomology is emerging in different ways.
Allison Cooke 26:52
Yes, and I think one of the things that’s different in brain cancer to other cancer streams, is they don’t talk about it in a way of benign or malignant, because all brain cancers are deadly. So, the brain is a really confined environment. So, anything that grows in there is kind of not awesome.
So, they talk about grades. So, in the brain cancer community, they’ll often say grade one, grade two, grade three or grade four. So, grades three and four are your high-grade kind of cancers and grades one and two are your low-grade brain cancers, which is slightly different to the way it’s viewed in lots of other streams of cancer diagnosis.
Megan Gilmour 27:41
Yes, that’s a really useful distinction for us. And as you said that I just pictured it. Yes, it’s a confined environment and anything growing in the brain, given every aspect of the brain, is playing a vital role in survival.
Even growth is not only disrupting, or even it being there rather, and slow growing, it’s disrupting vital functions. And yes, I haven’t heard it explained that way. So, thank you.
Allison Cook 28:23
No, that’s okay.
Megan Gilmour 28:24
What kind of complications do kids with childhood brain cancer face? And that might not just be clinical, it might be effects to their life overall.
Allison Cooke 28:36
There are lots of complications. And I think that’s reflective of the complexity of the brain. So, our brain is complex just by nature.
So, those complications can look like cognitive. So, whether it’s the way they process information. So, if we kind of do a bit of school speak, whether it’s their working memory, how they can hold that information, whether it’s the way they process the information.
So, for my own child, she has both of those but has a normal IQ. So can do the work but needs extra time or needs some memory prompts to help her with that. That can be one kind of way that it might look moving forward.
Another can be that there is some cognitive kind of side effects. And that can be really tricky to navigate in terms of the learning environment. There can be those physical, as we were talking before around, you know, whether it’s weakness coordination, needing to use a wheelchair because fatigue management’s really tricky.
They can’t get through a full day because or walk around for a full day. So, whilst they can ambulate or walk, that wheelchair’s there to help them be able to do everything they can do.
I think one of the complications is also around the way that they’re viewed by their peers, so socially, that social network actually becomes really complicated. And so, we’re speaking from our experience, Em didn’t have a best friend until she was in year five, right?
Because she wasn’t at school long enough to actually make a friend. And so, their social network, or their social web, is different. And could you, when you think about a 14-year-old who might be in their initial phase of diagnosis, those friendships change, so that is actually a massive complication in their life journey, because now they’ve got to work out where they slip back into that social network.
And obviously there’s those side effects about, you know, whether it’s attendance, whether it’s the complication for the family, because it complicates their finances, complicates their work, complicates the siblings. And I think that’s a really big one, the sibling and family network can be really affected by this journey.
Megan Gilmour 31:14
Yes, which leads us perfectly into the next question, which is, how are siblings and peers of kids with childhood brain cancer impacted and what should families be across?
Allison Cooke 31:25
They are impacted. And I think that’s something we just need to put on the table. This disease, this journey. Yes, it’s directly happening to the individual with the diagnosis. But that kind of first circle – we talk about inner circles and outer circles and all that kind of jazz – that inner circle where there’s the siblings and the parents, there is flow on into their lives.
And actually, I asked Lucas and my oldest this, I said, ‘Out of curiosity, what could have I done differently.’ What would you like would have liked me to have done differently? And he was seven when Em was diagnosed.
He straight up, and just said, ‘I wish you were more honest with me’.
And we did. We tried to protect him. We tried to not, you know, you don’t want to overwhelm them, but I hear what he’s saying, but it’s a fine line as a parent, right? How much information do you get?
But he has struggled on and off with anxiety, and he is a very smart little boy. Well, he’s not little anymore, he’s taller than me. He knew, right? He knew there was something wrong. He knew Em was really unwell, and he suffered anxiety for a really long time.
And his biggest anxiety – because when Em was in active treatment, it was COVID, you know, he wasn’t allowed to visit. He didn’t know, right? He didn’t know what was happening. He didn’t even know what the inside of the hospital looked like, because he had never been.
So, I think there’s a couple of things. One is having the siblings come to an appointment that’s not a scary or a really serious appointment, to see the environment and to be able to not make up pictures in their head, because, according to my 10 year old, she had made up all kinds of pictures of what the hospital that looked like and I was like, ‘Oh, I love your imagination’.
So I think that, you know, it’s a really important one, and that’s what I’ve taken from what Lucas has said to me is, whilst, you know, yes, we need to protect them, we do need to also educate them slightly, so that they can navigate it as well from there.
But I think for both of my kids, one of the biggest things is there is a little bit of anxiety, anxiety around what’s next, when are mum and dad going to be both home again, when’s Em coming home? How do I do this?
You know, there was a day that, and as I say this, don’t judge me as a parent. I mean, there was a day where I was supposed to have ordered Lucas a lunch order. It was my job, and Em got sick overnight, and we ended up in hospital, and I forgot to order it. So, he was he didn’t want to make a fuss, right? Because he’s that kid. He sucks it up, and he’s making sure everyone else is looked after. And I was like, man, I felt guilty when he got home, and it was like, ‘Oh, how was your lunch order?’ And he was like, ‘Mum, they said they didn’t have one’. And I was like, ‘I am so sorry. I’m so sorry babes, because that’s on me’.
And so, you know, I think that they’re a little bit of the invisible kind of, oh, I’m trying to look for the right word… they’re part of the invisible collateral damage of this whole thing.
Megan Gilmour 34:53
Yes. I mean, unfortunately, that’s a perfect phrase for it. And, your sharing is just, once again, a reminder of this common lived experience. This is exactly what we hear on every call to do with a chronic or complex health condition, and the siblings virtually trying to navigate it themselves, because the bandwidth of the parent is caught in an emergency.
And that they get anxiety, or they become super conscientious, and all of it. And, you know, you mentioned grief earlier, grieving. I mean, they’re also grieving for the family life that they knew, if this is a new diagnosis, or grieving for family life they could never have, if this isn’t a new diagnosis. And you know they are in the shadows.
An unfortunate aspect of this is that you know, if they’re, well, everyone’s just getting on with it, and they might be being physically looked after, but not getting that level of attention for what is a huge life circumstance that’s occurring for them, and they’re having to navigate. And also, just super cheers to the sibbies, because they really play a vital role in this whole picture.
Allison Cooke 36:31
100% and they take a different role. So, you know, if I look at Lucas the other day, Em was having – so Em has a PEG [Percutaneous Endoscopic Gastrostomy] – a side effect of her treatment and her brain cancer, where her swallow’s affected.
So, we talk about invisible things for her, people will often offer her lollies, and she can’t actually eat them. And she’s like, do I be polite and take it? Or do I say I can’t eat that? She was having trouble pushing what she needed to push through her peg. And Lucas just was, like, I got it Em, gave it a shake, pushed it through. So, they also take on this carer role, right? That they shouldn’t have to.
Megan Gilmour 37:10
No. Yes, they do. Yes. Amazing. The siblings are, yes, they’re developing all of that medical knowledge. And often, you know, some, some of them are actually in the clinical environment with the family, because that’s all that can happen for those.
For those that don’t know a PEG is a tube that goes through the abdomen, into the stomach to feed a child who can’t otherwise get their nutrition through oral feeding. This is just a little insight into another aspect of these journeys, all of the different medical devices, sometimes brutal treatments and things that they go through and that their physical body is subjected to. I say, subjected, because they’re not requesting this. They’re not asking for this. No, they’re having to, you know, parents consenting to it, and they’re not even assenting to it. It’s just they have to do it,
Allison Cooke 38:15
Yes, and that brings loss of control, right? For your young person, and that’s one of the presentations we see is they try to control what they can control.
Megan Gilmour 38:24
Yes, and that, that is terrifying. A lot of this is terrifying for them. So, you know, without kind of stretching the truth in any way, shape or form.
So, as we head into the conversation about school – this data – do you know how many school age children with childhood brain cancer?
Allison Cooke 38:46
No, I don’t know how many children are currently in the schooling environment with brain cancer. We can surmise that there will you know, given we know 120 young children or young people are diagnosed a year, a portion of those is going to be school aged children, and so they will be present in the schooling environment. But in terms of specific data on it, we don’t currently have any.
Megan Gilmour 39:15
And, yes, we need it.
Allison Cooke 39:19
Yes, we do.
Megan Gilmour 39:21
You answered this before, but I’ll ask it again, do kids with childhood brain cancer currently miss a lot of school? And if so, why?
Allison Cooke 39:29
Yes, they do. They miss a huge amount of school, and for lots of reasons. And I actually delved into what data I could find on this, but I had to delve into my own child, right?
So, I was looking at her attendance data, because I kind of know, because it comes up every time I log into her school account, it tells me how many days she’s missed. I’m like, great! So, I went and kind of looked cumulatively.
Now the data around COVID, which was her year one and her year two, I couldn’t get that because it was a bit hazy. She was in treatment. I would guess it was pretty low. But COVID also impacted everyone’s, you know, schooling in that period of time.
So, when I looked into what it looked like in year three – so, in year three, she had an open brain surgery, and she was on active treatment, her school attendance was 33%, which is super low.
It actually made me go, well, you know, some of the stuff that she’s talking about is that she’s missed a lot of foundational maths. And yes, she has, because she hasn’t been at school.
So, year four was pretty similar, right? So, year four was 43%. So, she had a second brain surgery. She was on more treatment.
In 2024, we were super lucky, we accessed a drug compassionately. It’s a different type of drug. It’s called a MEK inhibitor. So, it inhibits certain proteins in her body to starve her tumor, which has been really effective, just saying. So, her attendance actually went up. It went up to 66%. So, this gives her a massive quality of life, this treatment, you know, and she went back to school, but still missed 40% of her school year.
And so, year six, very similar, so was a little bit higher, so it was 75%.
And I jumped in to have a look – we’re week eight in Victoria of the school year, and she has attended 66% of the school year, and that’s, you know, a week-long hospital admission, it’s appointments, it’s therapy, because she has speech, OT, physiotherapy, all of that kind of stuff.
And it does, it impacts them so much.
Megan Gilmour 41:53
And as you say, it’s not just what you’re missing now. It’s the cumulative impact of missed school, all of the foundational things that you learned and could build on, as well as those shared experiences between peers across all of that time. All of that foundation is missing, and you’re coming in and out of school as a new person every time as well.
So just for perspective, for anyone who’s listening this, this threshold for chronic school absence is 10% or more of school missed, because every day counts. This is international. This is an international position; 10% or more school missed becomes really problematic.
So, what we’re hearing here is that Em’s missed anything from sort of 25% to 75% or, 66% or whatever, and so this is a lot of school missed.
And this is precisely why MissingSchool is trying to get our schools into the 21st Century for high flex telepresence environments for children who can’t physically attend.
I had the opportunity to sit with a young ACT student who we’ve supported, and he had 33% attendance in primary school, and now he’s attending 100% of the time, but a lot of that again, 33% to 66% or whatever is via a telepresence to get him into the classroom when he’s not physically there, when he can’t physically be there.
So, this is more than a plug from me. This is critical infrastructure for our schools that we need today. And if we, if we’re not convinced of that by hearing Allison, then pop on over and listen to the 40 other Live and Learns we’ve done on different medical conditions, and it will become clear.
Allison Cooke 44:19
It’s problematic. And you know, I must admit, we are very lucky with the school my children attend, and they will upload things to Teams for her so she can go and catch up. Not so much in the primary, but definitely in the secondary. That for her, you know, has been really helpful. I’ve got pictures of her laying on the oncology floor doing homework. Do you know what I mean. Being able to be flexible is it’s a key to help these young kids stay engaged.
Megan Gilmour 44:49
I’d love to see, you know, Em being able to join class in real time. Yes. So, she’s not trying to teach herself and catch up herself, because I don’t know like…
Allison Cooke 45:05
I know I would like that too 100%!
Megan Gilmour 45:07
The idea of a well, high academic achiever, sitting at home teaching themselves through some lesson pack, I don’t think that’s any education system’s idea of how education should take place. So, you know, this is why we’re here anyway.
It would be remiss of me not to plug this, and I know I’m preaching to you as the converted, that these are all always messages for the broader public and for policy makers about just how vital this is.
And I will include here even for children in end of life. And we have provided this because their experience to know that they are valued, loved and a part of their community and missed when they’re not there is life affirming in this very moment.
Allison Cooke 46:05
It 100% is.
Megan Gilmour 46:07
Yes, it’s something we should not and cannot overlook. And given that we’re talking about, you know the number of children with brain cancers, not surviving into adulthood, we have to do this now. We can’t wait. We need to have it operating every day for them.
What are the critical times in a kid’s life, a kid with childhood brain cancer in their school life? Yes, those critical school lifetimes, what are they and what should we prepare our schools and families for?
Allison Cooke 46:48
Can I be controversial Megan?
Megan Gilmour 46:50
Please!
Allison Cooke 46:51
All of them, they’re all critical! I get what you’re asking 100% I get what you’re asking in terms of, and I can tell you some of the more critical, if we want to term it that way. But all schooling is critical. You know that engagement in learning is critical, no matter when it is, so I think you know, and this is not going to come, shockingly, to anyone – transitions.
So, transition from primary to secondary, transition into the VCE, kind of climate and environment, particularly around special provisions and things like that. I think transitions from kindergarten into formal schooling.
They’re all really important, critical times, because information gets lost, right? So, you’ve spent ages as a parent advocating, and you’re in there and you’re like, ‘This is what my kid needs’. And then they move to year seven, and none of that information moves with them. And then you start again. And as a parent, you go, I’m so exhausted. I just, am so exhausted.
Megan Gilmour 47:51
Yes, yes and yes, Amen to that. And not controversial at all. And I love that you went straight to transitions, because it is one of the big things that we talk about, and even transitions between classes in high school and transitions between teachers.
And you know, we’ve had kids actually miss whole school years where they finished primary school and went into high school, but they weren’t there across that transition, so when they went back to school, they’re in a completely new school, and they’re in high school from being a primary school student.
[They] never had the rights of passage at school with their own peers and when people talk about repeating school years. A lot of kids are really fighting, as you said, advocating for themselves, fighting and holding on to wanting to stay with their peer group and graduate with their peer group. There’s something about this that…
Allison Cooke 48:57
We’ve got, I mean, there’s a whole segue there, right, which we could totally get into around, what is the purpose of repeating a student just because they’ve missed school? Because if we’re doing our due diligence, if we’re sitting in that space with that kid, we’ve actually provided them with the learning opportunities they need. So, I think there’s, there’s a whole probably big dive we could go into that, that we don’t have time for.
Megan Gilmour 49:21
Yes, but look, I mean, let’s flag them up because it’s just so important, and then you’ve got – you touched on it at the beginning, and I smile, because I just love it so much. Is, you know, the bit of adolescent attitude coming through and the bit of like, ‘leave me be I’ll do my stuff’. You’re like, but with me. But I love that, because it also reminds us that these kids are also going through their developmental stages.
Allison Cooke 49:59
Oh, yes, right. Like they’re going through puberty like every other you know kid, well, I mean, Em’s puberty is a little bit slower, but that’s a side effect of – we talk about treatments and things, side effect of treatment.
But tell you what, she has the same attitude as every other year seven girl and we’re very lucky with them, and I understand not every family is in this situation, she will self-advocate for herself. She sent her PE teacher and the coordinator an email that went, I’m a para-athlete. This is my classification. These are the events I would like to do. Can you enter me, please?
And so … but that attitude, right, is born from having to advocate for herself in a hospital setting, where she goes ‘I don’t want that drip in that arm. I need you to put it in the other arm’ – ‘I don’t want to have that drug without first you giving me this drug, because I know that’s going to make me want vomit’ you know.
Megan Gilmour 50:57
This reminds me…
Allison Cooke 50:58
But I tell you what, she’s got the same teenage attitude as every other kid.
Megan Gilmour 51:04
But they are fighting for their lives, in hospital. And sometimes, and many times, they will pick up potential medical misadventure. They will pick it up. My son picked up – ‘No, no, you can’t give me that I’m allergic to it.’ – ‘No, no, it’s not written on your chart and the doctor’s written it up’ – ‘You will not be giving it to me!’. I’m talking about a 10-year-old. ‘No, no, you’re not giving it to me!’.
He also became like, absolutely had chronic, chronic, like, let’s just call it extraordinary fear of anesthetics in the end.
Allison Cooke 51:45
Yes, it’s a real trauma.
Megan Gilmour 51:47
Yes, and he became so hyper vigilant that someone was trying to trick him into an anesthetic, and I later learned why, when he became older, what he told me, and I’m not going to share it here, because it should come with trigger warnings.
But he would sometimes, when they were prepping for that and they said, no, no, we’re just going to give you a flush through your line, Darcy, and he’d say, ‘no, no, flushes don’t have that level of bubbles in it. That’s another drug’. That’s how much they pay attention. That’s how much they’re watching.
And I, I love that your daughter has, you know, if that’s what she can take from this journey and apply in her life to get what she needs, what she deserves, what she wants, all the power to her for that.
So, just coming to the end of our conversation now, yes, what would be – you’ve talked about the biggest challenges and vulnerabilities facing kids at school, and we haven’t gone into the specific risks, like needing to be away from people who are infectious in school – and school’s a place that’s full of infection – and all the other things that would be written on Em’s health and safety plan at school.
Let’s skip to these last two questions. What’s happening now in schools to address the challenges and vulnerabilities and needs that Em faces, and what do you think schools and governments currently don’t know and need to remedy?
Allison Cooke 53:33
I think those two kind of almost come together a little bit. I think that, for me as a parent, and this is something I hope, if parents are watching, they take away. We’ve advocated really hard to have care team meetings where we bring all that everyone together, right? Because it’s something that’s not being done well in many schooling environments for our medically complex kids.
And so, for us, we have a Peace of Mind navigator. His name’s Jonathan. He’s awesome. And so, for him, he pulled that team – so he’s my he’s my person that goes, ‘Okay, this is something I can do to help you’.
And he came into that meeting, and he helped them understand what it looks like for her, because it’s something that our schooling environment doesn’t do well, but it’s also something the government’s not acting on, is the upskill of our teachers to understand what it looks like for our chronically unwell students, and that they deserve an education like everybody else.
And so, we can’t blame the teachers for not knowing what they don’t know, but we can say to the government, you need to do this better. Actually, you need to be funding organisations like yourself to be able to go into schools and say, ‘Hey, this is what it looks like for our young people that have chronic health conditions that are not in the classroom.’
So, whether it’s brain cancer, and you know, for me, I’m here because brain cancer is where I’m at, right because that’s my kid’s journey. But this is not limited to brain cancer. This is something all our children deserve.
They deserve to have teachers who understand their needs and how they can access the curriculum, like whether it’s their able-bodied peers, whether it’s you know, they just deserve it Megan, and I think it’s something schools are still really working hard to do.
And if I’m talking to a parent of a brain cancer, person, for me, what I want to say to them, there are resources to help you with that. You know, use your foundations like Peace of Mind that can come in and help you advocate for your child so that they can have the learning plan they deserve to have, because they deserve to have it.
Whether it’s hey, you know, whether it is that we redirect them towards you. Say hey, reach out to MissingSchool, they can help advocate for your child to have the learning plan that they deserve.
Because our teachers have lots of burden, and that is the reality of education. They cannot be over everything 24/7, but they want to know what they don’t know. They just need someone to come and teach it to them.
Megan Gilmour 56:25
Yes. Bravo. Bravo. And I love hearing people’s feedback on this question, because I think for us, when we finally do our impact report, where we collate all of these questions and answers from all different organisations, we’re basically going to have the blueprint for what needs to be a nationally consistent approach, like, what are those elements?
And I love your identification of this navigator, because I think this is somebody who can sit, who is employed by school systems and between the health system and the school system. And it doesn’t need to come from every charity in Australia.
Charities cannot do this. I just need to say it. Charity can’t do this. It can’t be programmatic, relying on government to smatter out some money to some charities and others, where some kids, you know, voices are heard via a person from a charity in a school.
We need that navigator to be a systemically employed position that goes between schools and creates the intersection between health and education that currently doesn’t exist. And I completely agree with you about teachers. I mean teachers in any single class –
If we say up to 30 and it’s probably higher, there’s some data showing it’s up to 40% of kids have a chronic medical condition in Australia today. That’s over 1.2 million students. We know 1.65 million students are not attending school for 10% or more of the time for a whole range of reasons.
The fact is that teachers just can’t do it, and they can’t possibly understand and know the depth of every medical condition sitting in their class. But what they can know is, what’s the Individual Learning Plan for this student? What’s the health and safety plan, and what do I need to do to make their education work for them.
Allison Cooke 58:43
100% and when we talk about that, it’s equitable, isn’t it? Right? Because we’re really, really lucky that within the brain cancer community we are in, we have a navigator to help us. And Em’s super lucky because I kind of have a bit of experience in the area as well, so I can, you know, guide the whole conversation.
But that’s not equitable to, I know we’re here for brain cancer, but it’s not equitable to one of her little besties who had leukemia, and she’s experiencing very similar issues, and we’ve got someone to help us navigate it, but they don’t. How is that fair?
Megan Gilmour 59:19
Yes, and if a child doesn’t have a parent with the agency. And just pointing out, you know, families can be under all sorts of duress. They can have more than one child with a health condition or circumstance.
The cost to the family of complex medical conditions is exponentially higher than if you don’t have a child facing one of these complex medical conditions or mental health conditions.
The fact that one or both parents have to cut their work to actually navigate this journey as well. Usually, it’s the mother doing it. And all of these factors add up to families often struggling, and not everybody can find their way through to advocate for their child the way that we’re talking about.
Allison Cooke 1:00:17
100% I’ve been there though Megan, I sat there, I cried. I fully cried in a room with people from the school of which I walked out of, and then I was super embarrassed, right? Because I’m a professional, you know?
I’m a professional in this space, and I cried in front of these people that I have to then go and work professionally with, because I was overwhelmed and burnt out because I missed that my youngest has a chronic medical condition. She has Ehlers-Danlos, and, you know, we were dismissive of it. I’m like every other parent, right? Because you’ve got guilt there 100%. But just because you have capacity doesn’t mean you can see it in the moment.
Megan Gilmour 1:00:58
And I love that you’ve shared that you cried because, look, I love a good cry. I still I don’t mind tearing up anywhere. And, yes, I mean, I hear people talk about me on my journey, and I’m sure you get the same too, just sort of praising you and yes, and a little bit of sort of hero worship. And I really just want to disabuse people of the notion that this is not a choice.
Allison Cooke 1:01:36
We are surviving, Megan we are surviving.
Megan Gilmour 1:01:41
Yes. And I mean, it’s lovely to hear people make that acknowledgement, but that again, it’s imperative to appreciate what goes on behind closed doors, and what it actually takes to rise to every occasion required of you is. And there isn’t a choice here.
Allison Cooke 1:02:05
No, there’s not.
Megan Gilmour 1:02:07
I remember a mother in hospital. She and I talked about this, and she said to me, Megan, I’d love nothing more than to go into a corner and crouch down and start rocking. And she was like, but she was a single parent, and she said that I don’t have the time, let alone the choice to do that.
Allison Cooke 1:02:35
100%
Megan Gilmour 1:02:36
So, you know, and this is a really important note to close on, and I’ll also throw in here a pitch to the Disability Standards for Education, which enable the individual learning plans that Allison’s talking about, the plans that can provide the accommodations needed for fatigue, for drug load, for placement in classroom, for accommodation of wheelchairs, for adjustments to time given.
There are so many adjustments that can be made. They’re all enabled by the Disability Standards for Education, which cover these kids in and it’s a regulation applicable to every school in Australia, regardless of state or territory, regardless of school system, regardless of school grade.
So that is ready and available to provide access to the school, access to the national curriculum, learning alongside peers, accommodations, additional supports, funding to the school to enable those, and freedom from harassment and victimization, and assistive devices that today is things like what we’re presenting this on a two-way, digital connection, a screen with a video conferencing technology sitting behind it that’s clickable by everybody, workers from working from home in Australia, universities, the VET sector.
Let’s get it into schools too. We can do it. We proved we can do it. We proved it in COVID, little old MissingSchool over here is proved as a tiny charity, that when schools have this technology and they use it, teachers just excel at teaching once in that classroom, when that child is there.
So, Allison, is there anything else you’d like to mention about quality of life for childhood brain cancer that you haven’t already told us?
Allison Cooke 1:04:37
They deserve a childhood? That’s what I want to tell you. They deserve a childhood, and they deserve to go to school.
Megan Gilmour 1:04:45
They absolutely do, and it’s hard to quantify just how much they deserve it. They get to learn an appreciation for school that others may take for granted. Now, what’s your call to action? You might have just said it [laughter]
Allison Cooke 1:05:08
We need to do better. Yes, that is, that is the reality. Kids, kids with brain cancer, deserve to go to school. They deserve to live longer, and we need to step up.
Megan Gilmour 1:05:25
Yes, I second that absolutely. And I know everybody listening to this, and even those who don’t get to listen to it, will agree with us.
So today, I want to say an enormous thanks to Allison for your knowledge, your openness to share, your lived experience, the tough parts, the enlightening parts, the triumphs, the gratitude you bring and energy that you bring to this and the way you present it has just been also extraordinary to watch. So, I applaud you for that.
And I also want to give a big shout out to the Peace of Mind Foundation. Allison’s referred to the Peace of Mind Foundation many times, and the navigator and the navigators and the support that you can get to take this journey. You’re not alone.
Head to PeaceofMindFoundation.org.au [http://www.peaceofmindfoundation.org.au]. Go there. Give generously. Give your volunteering support. Give them whatever they ask for, because they’re out there doing an amazing job for kids with brain cancers.
Allison, thank you for joining me today. It’s been an absolute honor and pleasure to have you on Live & Learn.
Allison Cooke 1:06:51
Thank you for having me.
Megan Gilmour 1:06:52
Megan, 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 MissingSchool.org.au, because every dollar makes a difference.
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