RECORDED: Thu 20 Nov 2025
SUMMARY KEYWORDS: Brainchild Foundation, brain tumours, spinal cord tumours, acquired brain injury, pediatric neuro oncology, school connections, mental health, treatment impact, survivorship, cognitive issues, sibling support, peer challenges, educational adjustments, community support, advocacy.
SPEAKERS: Megan Gilmour, Belinda Brunoli, Vonnie Hastings
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 00:44
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, we’re meeting Vonnie Hastings and Belinda Brunoli. Vonnie Hastings is one of the founding members of the Brainchild Foundation, established in 2010 to support the families of children who have been affected by brain and spinal cord tumours.
Vonnie has extensive experience as a nurse specialist in pediatric neuro oncology before her retirement in 2019. Vonnie has been the secretary and support officer at Brainchild since its inception, and is the driving force behind their vision of giving children with brain and spinal cord tumours a better tomorrow.
Belinda Brunoli joined brainchild foundation in 2010 after her son was treated for a malignant brain tumour. As a small business owner, a parent advocate and advisor with the Australian and New Zealand children’s Hematology Oncology Group trials advisory group, parent and carers advisory group. Belinda is a board member and manages fundraising and awareness activities for Brainchild Foundation.
Welcome Vonnie and Belinda. We’re so excited to have you on Live & Learn today.
Belinda Brunoli and Vonnie Hastings 02:29
Thank you.
Megan Gilmour 02:30
So today we’re here to talk about supporting school connections for students with complex medical and or mental health conditions. So, let’s jump into the first question.
Vonnie and Belinda tell us how brain and spinal cord tumours impacts kids and why it’s something that every Australian needs to know and care about.
Belinda Brunoli 02:39
Well, it’s a massive impact on children. There’re about approximately 300 kids in Australia each year that are diagnosed with either a tumour of the brain or the spinal cord, some benign, some malignant.
Sadly, a lot of children do not make it past the five years. But as Vonnie will attest, there’s about 77% that will survive their tumour, but a lot of them have significant issues that occur because of treatment or surgery or just the tumour itself.
So, treatment’s invasive and traumatic, and it’s traumatic for the whole family. It’s just the beginning of the journey for them, really.
So really, I think the main reason that everyone needs to know about it is because these kids deserve better futures and better tomorrows, as Brainchild attests to and we think that the more people that know, the more awareness that kids get brain cancer, the more money and the greater impact.
Megan Gilmour 03:51
Thank you, Belinda, that’s certainly a really good call to action for everyone. And I’ll turn to Vonnie to get her perspective, and then I’m sure we’re going to dive in deeper to what this actually means for kids.
Vonnie, what are your thoughts on why every Australian needs to know and care about brain and spinal cord tumours?
Vonnie Hastings 04:16
I don’t think people are fully aware of the damage that a tumour can do, and we are talking not just about malignant tumours and all the treatment. We’re talking about benign tumours. We’re talking about endocrine tumours. Any tumour that was within a brain, of course, is an acquired brain injury, so the child is not just facing the trauma of treatment, it may just be surgery, or it may well be full gamut of radiation, chemotherapy, surgery, whatever.
They have that acquired brain injury through no fault of their own, and then they face life from then on with that problem. And it does – it impacts – I’ll talk about a little bit later, but the impact is enormous on both the child and the family.
Megan Gilmour 05:07
Yes, so there are the tumours themselves, whether they’re benign or malignant. There’s the treatment, which is, let’s face it, brutal. And then there’s – what you’ve let us know is – that acquired brain injury, that regardless of the outcomes that’s carried through in their lives.
So many people might assume things about brain and spinal cord tumours in kids. What’s the million dollars question you get from parents or loved ones when their child experiences or is diagnosed with brain and spinal cord tumours.
Belinda Brunoli 05:49
I can tell you, as a parent, you know, the first thing you want to know is, will they survive? And you want to know if they’re going to be the same, you know, the same child.
I remember standing over Thomas when he came out of surgery and just hoping he knew who I was, you know, because you get told all of the horrible things that happen in surgery and could happen, sorry, and you just hope that they recognise you and that they can speak.
Yes there’s so many millions of questions, Vonnie would know, she was probably at the coalface for a lot longer than I was.
Megan Gilmour 06:23
So yes, so you have that personal experience
Vonnie Hastings 06:27
And that’s so valuable
Belinda Brunoli 06:29
Absolutely. We both have personal experience from different angles.
Megan Gilmour 06:32
That’s right, yes. So, yes. Vonnie, what would you like to add to that?
Vonnie Hastings 06:40
I think it’s important to know that we do talk about a 77% survival, but we do know as well that there are some tumours that there is no survival, and you’re just conscious [of that].
So, we initially would meet the family after surgery, but prior to the surgery, there would have been an MRI, there would have been indication of what the oncologist and the surgeons felt was the tumour type.
And so, it being prepared to not just support the child, but to support the extended family, right when you meet up with them.
And not to make it all doom and gloom, but to be honest, and to give them hope that with the current improvements in treatment, we are doing so much better than in the past,
Megan Gilmour 07:36
And the best days that we can have, for these children, you know, everyday matters, and you want to have the best day that’s possible.
Thank you so much for your answers. And Belinda, I just want to acknowledge your journey before we go any further. And I’m sure we’ll hear more about that.
What’s the most important thing that you want families and kids to know at the time of diagnosis, or even throughout the journey?
Vonnie Hastings 08:19
I think it’s so important, and Belinda will support me here, that you take it slowly, that you take each day as you go, that you communicate constantly and advocate for your child no matter what you think is happening, so that you get the information, but you get it slowly.
I think a lot of people just want to know everything at once, and they want to know the outcome. They want to know the finish. But if you do that, it just overwhelms you. You’ve got a lot of decisions to make. The doctors will talk to you about going on to treatment. Yes, they will be really good, and they will explain things, but you take in a little, not everything, and you need to be able to revisit that later.
And my role was as a clinical nurse consultant for all of the neuro oncology children in Queensland for about eight years. And so, my role was to come back and revisit what the doctors had already discussed and then make sure they understand, but also to advocate if there were some concerns that they needed to speak again about. And always, to be honest, but also be supportive.
Belinda Brunoli 09:33
I think it’s so overwhelming. You know, you’ve just had a child diagnosed, and bits of paper and information are thrown at you. I remember our oncologist was very excited about trying a new trial, and it was just all going over my head.
So, it’s like Vonnie said, take it one day at a time. Write down anything you can. Try not to Doctor Google everything, because it’s terrifying. You know? It’s sometimes you just have to.
And in all honesty, we’re so blessed in this country with top notch medical care. We’re very blessed. So, trust in your treating team but ask questions and advocate for your child. If you don’t like something, you need to say something. Don’t be hard on yourself. Take time out for yourself, share the load, all of those sorts of things. You know, you’re not alone.
Your family wants to help. I know you kind of shut down, and it’s hard to share that grief that you’re feeling, but you do need to ask for help. And there’s a lot of charities, like Brainchild, Camp Quality, Red Kite. You know, we’re naming them all because we’re all doing the same thing. We’re all there to help these families. So, yes, reach out
Vonnie Hastings 10:52
And yes, my next thing, be aware that just because we’re in Australia doesn’t mean to say that these our teams are not global teams. They are really well connected to the latest in trials, and they constantly are updating and watching and taking on another trial if they feel it’s going to be possible to help a child. We’re not late from the world. We’re very much a part of that.
Megan Gilmour 11:20
Yes, and I think it’s that being thrust into that clinical world and all the clinical language and the necessarily objective approach to these things when it’s your precious person. And I think organisations like Brainchild play such a vital role in giving that more empathetic, nurturing and support in a different way than medical teams do.
It takes a lot of people to wrap the support around a family that’s needed in this circumstance, and also to understand at the same time, that that family’s capacity to manage that support and receive that support is also compromised by what’s going on.
So, people like you, Vonnie, where I see you as a bit of an intersection to the clinical and the deeply compassionate. I’m not saying that our medical teams aren’t compassionate, but they’ve got to focus on the science and that’s what we want them to do, but it does feel harsh when it’s a little person, and yes,
Belinda Brunoli 12:47
It does, but my God, they work hard.
Megan Gilmour 12:53
Yes. Well, I don’t know if you read my story, but my son was on the oncology ward of the Sydney Children’s Hospital and had a bone marrow transplant, and our doctor, I don’t know how many calls he took through the night over two years, but he took every one of them, and it wasn’t just for my son, either.
So yes, we have enormous respect for our physicians. And as you said, we have this lifesaving, if possible, treatments here and life lengthening and better quality of life, which is all the more reason for needing the compassionate services around to navigate through that day-to-day journey.
Belinda Brunoli 13:43
So, one thing for me too, is that my son’s oncologist, 20 years ago, we’re talking it was – it was 2005 – he’s now the chairman of Brainchild Foundation.
Megan Gilmour 13:54
Okay, I can see why. I’m sure your child’s oncologist would know my child’s oncologist, as you say, it’s not just all the international – it’s the way they work together across states and territories. That’s their cohort, their specialty, and they become a part of it. It’s an indescribable part of our journeys.
Belinda Brunoli 14:29
Absolutely,
Megan Gilmour 14:30
Yes, it’s hard to explain to people what that person means, and yet, well, you see, see your doctor more often now, but you know,
Vonnie Hastings 14:40
I do think too that the doctors find it hard to say goodbye too, that move up to the adults.
Belinda Brunoli 14:51
They really want to keep them.
Megan Gilmour 14:54
Yes, it is a very special relationship, that’s for sure. And, yes, thank goodness that – and I felt this, I feel this today, but I felt it at the time as I was even thinking – thank goodness Professor Cohn decided to become a doctor. Thank goodness he studied what he did, thank goodness. You know, it’s all those things that lead up to that time, in terms of the treatment and everything else, it’s such a trusted and important relationship.
Belinda Brunoli 15:34
It really is. I tell you what – now – and not trying to change the subject, but I have another different son, who currently has cancer – a different cancer, and it’s a whole different kettle of fish when it’s an older child. You don’t have that relationship, you don’t have that control. It’s really hard as a parent.
Megan Gilmour 15:55
Yes, yes. I can see what you mean by that. Yes, yes. The level of advocacy that you can do for a child under the age of 18 is different to an older child, but all the feelings are the same,
Belinda Brunoli 16:14
Yes, yes.
Megan Gilmour 16:17
So, we’ve kind of covered the next question, but what brought you into the world of brain and spinal cord tumours. Is there something more you’d like to say about it?
Vonnie Hastings 16:30
So I was a pediatric oncology nurse for some 40 years, and that was not all in neuro oncology, but there was a new role that was offered as the clinical nurse consultant for Queensland, and so I gave it a go, and for eight years that really taught me a lot about the families and about the diseases and also how to stay true to what you believed in, and how not to become cynical in your compassion.
There were times, but I always zeroed down on what I could do in one day to make a child smile or know that a family were a little bit more relieved. And then I had an amazing neurosurgeon who came to me one day and said to me, ‘Vonnie, what can we do? We’ve got to do something to help these families.’
And Martin Wood really was the driving force. So, we got together, and then our father was in the ward at the time, and he said, I’m hopeless by the bedside, but I can raise money [this was Rod Field and he became the third person] and the three of us literally, you know, a little thing, and we grew it from there.
And of course, met Belinda and David, her husband very early on, thank goodness, and they were the same. So isn’t it amazing, we feel as though we have started to make a difference. We’ve got a lot more to do.
Megan Gilmour 18:16
Yes, yes. Ah, well, we need people like you, I mean both of you. I mean we need people who are prepared to cause, make force, drive the change that’s needed, because you’re firsthand witnesses and with extensive and deep experience, and once you know what you know, you can’t unsee that.
Vonnie Hastings 18:45
No
Megan Gilmour 18:46
So, there’s only two ways you can go, that’s to do something with it, or to, sort of, as many people do, and that’s understandable too, is say, I’m through that, and I don’t want to go back there. But, yes, nothing changes unless people like you – and I’m saying this to myself, because I really need to hear it this week
Vonnie Hastings 19:13
Yes what you do – what you’ve done is amazing
Belinda Brunoli 19:16
We need advocates. Everyone needs to be amazing. Different people give back in different ways, I suppose.
Vonnie Hastings 19:23
We’ve seen people who come for a small while. They may have lost their child or whatever, and they need that time of just giving to other people, and then they need time for their own family, and they need to back away.
Megan Gilmour 19:36
And that’s it. That’s it and that’s totally understandable. It’s a big journey.
And Belinda, did you want to share with us any more about your –
Belinda Brunoli 19:48
Look, my son was 12 when he was diagnosed with – what was called a peanut back in those days. I’m not entirely sure what it’s called. Now, it’s different. So, an aggressive malignant cancer. He had surgery, radiation, chemotherapy, missed a lot of school, spent a fair bit of time in hospital. But he’s now 32 he’s living in New York as a software engineer, living the good life.
So, he has issues, you know, he’s short, he’s bald, he’s got endocrine problems. He’s, I hope he’s not watching, but he’s slightly autistic. He’s just but he’s perfect. He’s good. So, we are very really blessed.
Megan Gilmour 20:30
You know, this is also a really great moment for people who are listening to take note. Don’t write these children off, not for any single day or not forever. That’s just such a great testimony to what medical science and compassionate care and great support and belief can see you through to adulthood.
Belinda Brunoli 21:06
Yes, positive thought too. We never treated him with kid gloves. We kind of forced him to do stuff he didn’t want to do, and maybe a bit aggressive with these things.
Megan Gilmour 21:19
I hear you. My son and I used to have an argument every night in hospital, about him brushing his teeth. And it kind of became one of those things that was, yes, it was about dental hygiene, but it was really about so much more, you know, it was like,
Vonnie Hastings 21:39
This is what we normally do. Come on, this is what we do.
Megan Gilmour 21:41
This is what we do. We’ve got to do it. And also about, you know, having a shower, he had a central line in and so that was kind of difficult, but honestly, it could take us 45 minutes to an hour, and then he’d get in the shower and he wouldn’t get out.
Because my theory in life is clean sheets, clean towel, shower solves so much! [laughter]. And so, he’d have a shower, I’d change the hospital bed, and then we’d have the same argument about brushing the teeth. But anyway,
Vonnie Hastings 22:18
I like the fact that he was still stubborn!
Megan Gilmour 22:21
Exactly. But Vonnie, it was really interesting, because a lot of the nurses and doctors – because he would be quite, he’d be fighting, he’d be being rude and whatever, and I’d still be trying to parent him. And it was so ridiculous.
But they’d often say, ‘Don’t worry, Megan, we like them fighting’. And I always took so much note of that, because so many different clinicians and nurses said it, and it sort of said to me you want them having that, maintaining that – not just giving up.
Vonnie Hastings 23:05
Yes, it’s strength and the courage. There’s a lot of courage there.
Megan Gilmour 23:09
That’s why I’m on this call today. That’s why I get up every day and do this, because I witnessed these kids just taking it on the chin, getting on with playing when they could just, they just have so much courage.
And when I feel like things are hard, I just think about that, and I’m like, this isn’t hard. This is just a day where things aren’t going my way, you know? And, yes, that’s a hard day, what they do.
Now next question, because I’m seeing that we could just talk a lot. So, knowing all that you know, what’s your biggest hope for kids with brain and spinal cord tumours and their families and loved ones when navigating their journey? What’s your biggest hope for them?
Belinda Brunoli 24:04
Clearly, as every parent, well, everyone, a cure – the dream of a cure, or, even better, less invasive treatments. I know that there’s a lot of research being done in that, in that field now.
There’s a lot of research also being done, thankfully, on survivorship, which is really important, because, as we’ve said, 77% these days, they do survive for a period of time or forever, and the survivorship needs to be looked at.
So going back to school, how do they navigate, going to work, you know, all that sort of stuff. So, you know that would be my greatest wish, and also that people know they’re not alone and they seek help.
Vonnie Hastings 24:51
I echo that, incredibly, because we know that, as we mentioned earlier, that the acquired brain injury stays forever. So that recognition that no matter whether it was a benign and sometimes it can be very mild that acquired brain injury, it can, but it’s enough, even though it’s invisible to just watch and help and there’s not enough help in that survivorship time.
We’ve been very fortunate in managing to get a grant that allowed us to just be part of the research between QUT and brain cancer at Queensland Children’s Hospital and clinically and out in the regional area.
So, it basically is looking at how a family can go home, not just with that nurse that saw them through all the treatment but go home with that connection as they leave and they go back into the regional or the community areas.
So, they have a go to person who can say, look at this point in time, it’d be really good to look at this. You know, have you thought in that situation to contact this community, or contact this NGO that can help you with providing tuition or providing support outside in therapies, not just NDIS, because NDIS does not cover every child and does not cover everything that a family may need.
That link from clinical to community is something that they’re trialing up here in Queensland, and I’m so proud to be part of that.
Megan Gilmour 26:28
Yes, you’re right. It’s, it’s the journey doesn’t end when you leave that hospital setting. It’s just really another part of the journey starting. And just as important. I often use the term, we’re not just saving bodies, we’re saving hearts and minds as well, and all of that adds up to a better life.
Vonnie Hastings 26:55
Yes
Megan Gilmour 26:59
Thank you for that. And what are some of the common and perhaps frustrating public misconceptions that might occur in these circumstances, and how have you seen that have an impact?
Belinda Brunoli 27:09
I know that often, when the kids finish treatment, hair grows back, they’re looking well, people just assume they’re just going to slot straight back into normal life. But that’s not possible. You know, some of them can’t – they have hearing issues, sight issues, as Vonnie said, with the brain injury, learning issues, behavioral issues, emotional issues, you know, there’s a huge gamut – you know, endocrine – Thomas is on medication for life, that sort of stuff.
You can’t just expect these kids to just go straight back into normal life. And that is a huge misconception. You know, a lot of people can’t go and play sport like they used to, all those sorts of things. So that would be probably one of the biggest ones that I’ve found.
And also, just knowing what I know through Brainchild, because I wouldn’t have known this stuff unless I was thrown into this world. Benign brain tumours – don’t assume that, because it’s just a benign brain tumour, that it can be whipped out and it’s gone. They cause so much trouble as well. They can cause eyesight, hearing and, so many issues.
So yes, it may not be cancer, it may not be life threatening in that regard, but it can still be life threatening in other ways.
Megan Gilmour 28:29
Yes, absolutely and I hear you when you’re saying just not to assume that when the child’s back at school, that that they’re completely well and everything’s smooth sailing.
At the same time, what we say is, don’t assume, when they’re not at school that they can’t engage in things,
Vonnie Hastings 28:51
And I’ve seen your robots, I love it
Megan Gilmour 28:53
I was seeing some remarkable things. But it is, it’s addressing those misconceptions. And Vonnie, what are your thoughts on that, on the common misconceptions.
Vonnie Hastings 29:07
It’s, some kids think they’ll catch it. Oh, ‘I don’t want you, go away, I don’t want to see you.’ So, the poor kids. But that’s just fear of the unknown.
And definitely, as Belinda said, that feeling that it’s like you’ve broken a bone, you’re healed, and you go back. It’s not like that and sometimes families don’t realise that either you know, and I think they need to be.
I want to be gentle here, because a family who’s gone through treatment like this, or even with surgery. They need to know that things will get better, but it’ll take time. You’ve got to be patient with the healing of the brain and recovery.
And the brain, I’m very much pro – now I’ve forgotten the word –
Megan Gilmour 29:58
neuroplasticity.
Vonnie Hastings 29:59
Thank you so much.
Megan Gilmour 30:02
I’m pro it too. That’s why I know it.
Vonnie Hastings 30:06
The brain can adapt and improve things, but you’ve got to be patient. And people are not patient when they, you know, they go that’s all done, dusted. And plus, families are exhausted.
Megan Gilmour 30:19
We want to just go back to normal.
Vonnie Hastings 30:23
And normal’s different,
Megan Gilmour 30:24
Exactly.
Belinda Brunoli 30:27
Well, the whole family changes, don’t you? Your friendships change. You lose friends, you gain people who you wouldn’t have thought were going to be your friend, family let you down. There are so many things that happen.
So, one of the misconceptions that I hate, and that’s really not a misconception, it’s just a grievance of mine, is how the media and the general public, you know, they want to see bald, smiling, cancer kids.
That’s not really, I mean, yes, that’s the reality for a few months, or six to 12 months, the reality is so much bigger than that, and it’s not sexy enough for the majority people just make notice of it, you know what I mean.
Megan Gilmour 31:06
Yes, I agree with you and that used to drive me crazy and also some awful things happened. I just have this distinct memory of a teenage girl being chosen to be in a photo shoot with someone, and then when they realised she had hair again, they didn’t want to do that…..and it’s really just, yes, that used to really grind for me as well.
Belinda Brunoli 31:43
Very annoying…
Megan Gilmour 31:44
Yes, I mean, it’s, as you said, and you named a few things there, we won’t sort of dwell on it, but there’s so much more to this journey, including what happens interpersonally, and you said it there, it’s people you expect to behave in a certain way don’t.
Other people who are sort of adjacent or peripheral in your life come in and they’re there every day. It’s such an extraordinary experience. And probably also, I mean, I’m so glad, I often say this, that I didn’t make decisions about relationships during that time.
I really held myself to not make any decisions during that crisis because of all those things that you expected, the way you were disappointed or let down, and the way you are sort of surprised by the way different relationships evolved
Belinda Brunoli 32:38
All of us handle things differently, don’t they? Some people don’t know how to handle that sort of stuff.
Megan Gilmour 32:51
Exactly.
Vonnie Hastings 32:52
They run away from it.
Megan Gilmour 32:54
Exactly. Well, yes, that’s true, but it’s also why we have to have these conversations which wrap around the sort of jarring nature of the actual illness or disease or the thing that’s happening, in this case, tumours.
And kind of look at all of the things that are happening for the people involved in that, and why these organisations like yours have had that lived experience, understanding, and so you don’t have to say a lot of the things you have to say to other people, because it’s already understood. So, you can just get on with the things that are going to help
And so, you mentioned that there were 300 children diagnosed each year with a brain or spinal cord tumour, or both, potentially. And we also talked about the fact that there’s an acquired brain injury to a lesser or greater degree in all of these cases, and the treatments and everything else and that life goes on. So, we’re actually every time there’s a new 300, that’s 300 being added into the population across time, right.
Vonnie Hastings 34:12
So, there’s no data collected in Australia to collate that. And I have to admit that the data you all see about the incidence of brain tumours is more likely to be in the one-to-14-year age group, it’s 120 or something like that.
But if you put all of the brain tumour children together, if you put the malignant and the benign and the endocrine function – which can be really quite destructive. And you look at the one to the 18-year age group, because that is school age
Megan Gilmour 34:48
That’s a school age, yes,
Vonnie Hastings 34:50
Yes, then you are really closer to 300 to 350 per year. And sadly, the hospitals don’t tend to bring them all together. The surgeons will do their operation, and you go home. The oncologist will then follow a child through the whole gamut of treatment, but the endocrine people may just see the child and go home.
So, we need the data from every source. And I think Tim Hassel, who is our neuro oncologist, or one of a great team, he is adamant about making sure that every single child who has a brain tumour comes through the oncology team. That means that he’s collating all of them, the different ones.
I know that when I was working, it was 60 to 70 children per year in Queensland alone, and I think it’s about same, we have no idea of the numbers sitting around later on.
Megan Gilmour 35:53
Well, that’s right, and that’s why it’s important to have these conversations. Because as you say, Vonnie, our data tends to be between one and five and then six and 14 and things like this, so we’re just not getting that school age population, which is really a vital part of the child’s life.
And yes, here at MissingSchool, we focus on the school years, but really there’s early childhood education issues sitting there for the young, or the children who are preschool age, which we don’t cover.
But I’ll call that out now, because it’s also important, not only in its own right, but the fact that those children go on to be in the school system too. So, they’re bringing forward all of the opportunities, but also all of the challenges that they’re facing.
Vonnie Hastings 36:49
Absolutely.
Belinda Brunoli 36:52
So, back to school after treatment doesn’t mean that they don’t need help for years to come. We’ve had children on scholarship, on tutoring scholarships, for many years. They just can’t keep up. They can’t catch up with what they’ve missed. Their brain doesn’t work the same way, and their memory doesn’t work the same way. So, you know.
Megan Gilmour 37:09
And the treatments that they continue to be on also have an effect.
Belinda Brunoli 37:19
Disruptions I’m sure we’ll get into later.
Megan Gilmour 37:22
Yes. Okay, so we need more data on the numbers and better representation.
Vonnie Hastings 37:26
Yes, there are some really, really good research teams who try and do that. But can you imagine collecting your data from every single pediatric hospital in Australia.
And staying true to what your message is, they have to decide what coding they’re going to use, and then it’s very much a manual go and make sure that every single check of all of the information in the hospitals, it’s hard work. They’re always about five years behind because it’s a lot of hard work.
Megan Gilmour 37:59
Yes, I hope that this is going to be one of the good applications of AI to get across this.
Honestly, we have it in our work, and everyone we talk to, it’s pretty much the same, it’s – bar a few – we’re having the same conversation about all of these sort of disease groups and yes, anyway.
Is there a risk of delayed diagnosis, or are most cases of tumours picked up easily or early?
Belinda Brunoli 38:35
About half, half, I would say
Vonnie Hastings 38:36
Not even that. Not even. So, in all the time that I was working in this area, I don’t know how many times it was months before the child arrived. And by that time, the pressure in their heads was enormous, causing a lot of concern.
So, we had families who would say, ‘Oh, the doctor just thought it was gastro. They were vomiting a bit’ and that was reasonable the first time back, the second or third time. It’s not reasonable. Did they push on to have other tests done? Not often.
And when the child vomited, the child feels a lot better because they release that pressure in their heads. They would vomit, then they’d go to school and be normal.
Or sometimes, I know one time that this family told me their child was criticised by the teacher because she had looked at the teacher cross eyed. That wasn’t because she was looking cross eyed, it was because she had an issue. The child may have a twist in their head because, and they people think, oh, it’s ear.
So, I have a Brainchild list of symptoms that may have age groups, and it’s actually from the UK, but I think it’s one of the best lists I’ve ever seen. And I encourage anyone who’s got any concerns to go and have a look, and then follow up with their doctor
Belinda Brunoli 40:03
Yes and follow up and follow up and follow up and advocate, because I found, you know we’re talking 20 years ago, like we’ve said with my son, nothing’s changed. GPs are still very reluctant to send children, even young adults, as we’ve just found out with my second son, to go for invasive tests. They don’t want to put them in under scans. They don’t want to have MRIs.
Megan Gilmour 40:25
I’ve heard this too, and then it’s ‘oh, if we send you for that, you’ll have to pay’. Well, we don’t care. I’m just like, but that’s a choice I’ll make. You have to offer it, and then it’s an informed choice.
Belinda Brunoli 40:39
And a lot of people aren’t given those options. They fob it off ‘Oh you’re too young for cancer’ – whatever. And I don’t think – you know – none of its malicious, but sometimes they need to listen to the parent. We are not just panicking. There is something wrong, we’ve seen all the little bits.
It’s going to happen with any illness and any child, like we’ve had it hundreds of times we’ve been told the same thing. They’ve got to go back so many times before they get even a scan.
Vonnie Hastings 41:05
But hopefully, if we advocate strongly
Megan Gilmour 41:14
And capably
Vonnie Hastings 41:15
Yes, absolutely, I think people are now tending to go more to Google. You know, that helped in a number of our cases. One mum, she was from New South Wales. And she just said, nothing was happening. And finally, I Googled, and it was about the 10th thing on the list, but, you know, it just fitted what was happening.
Megan Gilmour 41:39
Yes, yes, exactly it was. It was undeniable. There was an undeniable correlation between what was happening in real life to what was being said there.
And I think AI will be doing a lot more of that now as well. And as you said earlier, Belinda, Googling can be so detrimental. I did it myself. But when my son was treated, there was no mapping of the whole genome either.
So, to try and decide what was happening for him was testing one genetic thing at a time, and so it also shows what can happen even in the five years following a complicated case like my son’s and just these medical breakthroughs.
But I think you’re right. There’s still the human element here of a diagnostic kind of pathway that might be fortified more. There’s such room for improvement, let’s put it that way
Belinda Brunoli 42:45
I don’t know.
Vonnie Hastings 42:46
I think GPs have actually been informed a lot more. I know that with the program we’ve got going from the Queensland Children’s Hospital, that every single GP gets complete case notes as the child is transferred out now.
So that indicates that more GPs are informed. And I know even with my family practice I go to; they actually have education sessions about the patients I’ve seen
Megan Gilmour 43:13
To try and do that peer-to-peer learning.
Vonnie Hastings 43:16
Indeed. And so, I think there are really good elements, and there’ll always be time and room for improvement.
Megan Gilmour 43:25
But I think it’s also, you mentioned Vonnie – a list on your website, and that’s one of the reasons that we’re doing these Live & Learns, so that we can develop your profile on our national health education directories, so that even if a child is at school with a brain or spinal tumour circumstance in their background or foreground, or currently that we’re hoping teachers will be able to go to that profile, find it – not just find information of a medical nature or clinical nature, but also, what does this mean for school? What can you do? What’s important?
That’s the bridge that we’re trying to get people across right now, quickly and easily. So, we don’t need teachers to be medical professionals. We just need them to say, here’s what you need to know, here’s what you need to look out for and let’s get together a plan for this child’s learning and social connection to make that better.
Vonnie Hastings 44:36
Megan, that is so important. And I said to Belinda earlier, I’d love to know whether you’d like some of the resources that we’ve received.
Megan Gilmour 44:45
Absolutely yes.
Vonnie Hastings 44:47
I was lucky enough to go overseas on a scholarship, and I went to London as part of that, and went to Marsden [Royal Marsden Hospital], and there was this book about returning to school for brain tumour kids. I was stunned by it, it was so good.
They’ve put out another one since. And yes, I try and give that to every parent who is applying for the Better Tomorrows, but also the tutors that I might have come on board, so they understand what these children are going through,
Megan Gilmour 45:17
Yes, yes, that we’re trying to just create greater ease, because teachers in any one class could have children with all sorts of things, and they don’t need to become the specialists as some of us, as parents. I was one of them, just filling them up with everything that I knew.
And in hindsight, it was really just trying to get the basic understanding of what’s happened and then get the best plan for that person’s education and social connection, and, of course, health and safety plan in school too – you know, what do you need to look out for, and all that sort of stuff too.
Belinda, I’m going to ask, we’ve got a question here, which is like the complications, but I hope we can just pull that through into a later question. I wanted to just ask, what about siblings and peers of kids with brain and spinal cord tumours as we move in to touch on the school issues, what should we know?
What should families be across and even teachers to do with this?
Belinda Brunoli 46:35
Well, it’s hard on the siblings. It doesn’t matter whether they’re younger or older. Number one, it’s the fear of losing their sibling.
It’s the time away from the sibling and their parent, because there’s always, in most circumstances, at least one parent is generally always at the hospital. So, you’re losing a lot of time with that parent. You know, you’re chucked off to grandma or daycare after school, whatever. There’s a lot of separation.
So, I mean, I would say this, it’s not all the time, but there’s quite a bit of behavioral issues that come with that, anxiety and depression for some of the older kids, probably, resentment because they’re getting all the attention and I’m not getting any attention.
And, you know, there’s this thing at hospital when you go in and, oh, the stars visit and people leave presents and blah, blah. And they’re getting all this stuff, and I’m not getting any of it, like, there’s a lot of jealousy I see as well. You know, they’re children. I mean, it is a thing, it’s a real, real thing.
And even, and with the peers, yes, same thing. It’s scared that they’re going to lose their friend. It’s losing those connections. It’s making other friends and then forgetting about the person that’s in hospital. Yes, there’s so much it’s complex, really,
Megan Gilmour 47:57
Yes, and it might be worthwhile then touching on what are the complications that kids with brain and spinal cord tumours face? And what you said there, Belinda, about siblings and peers, this might help us understand why siblings and peers feel the way they do, including having their own anxiety and mental health issues around it ongoing, not just at the time, but ongoing.
Belinda Brunoli 48:31
Well with the peer side of things, one of the complications, I would say, is having that lack of connection and then going back into a school environment, and Vonnie will tell you some of the other things that have happened to them.
But going back into the school environment and friends have moved and friends have moved on. They’ve made other friends. They, you know, you’re not the same person. There becomes this bullying,
Megan Gilmour 48:58
Yes, five times more likely, that’s what the research says.
Belinda Brunoli 49:02
Very likely – we find it all time. We have so many kids that have been bullied. And we’re very overprotective parents as it is, because our child is so sick, you know, a lot of people don’t cope with it, the parents don’t cope then. So that’s just for the peers. As far as complications, there’s thousands– hundreds.
Vonnie Hastings 49:26
Just on the siblings. I don’t think we realise how much they take on sometimes even, you know, they are just as fearful as the parents. So, when an MRI is coming up and the child is anxious, let me tell you, so are the siblings.
We were very blessed that we’ve been able to have a Brainchild camp every year. We have this towards the end of June, and we ask the whole family, because we know the siblings deserve that just as much as anybody else.
And I remember the last one I was at, I was watching this young man, and I think he was probably 10, and his brother was eight or a little bit. He was like a mother to him.
Megan Gilmour 50:10
I was going to say, we hear a lot about young carers
Vonnie Hastings 50:15
yes, and he knew everything about the child,
Megan Gilmour 50:17
Hyper vigilant,
Vonnie Hastings 50:18
Absolutely. But it takes, yes, another sibling to have that much.
Megan Gilmour 50:24
Yes, my daughter, my daughter told me – we’re in a Good Weekend segment The Two Of Us a few weeks ago, and that’s in the Sydney Morning Herald. But anyway, she was sharing about how much guilt she carried for being the healthy sibling.
Vonnie Hastings 50:49
Yes, yes. That’s something I put up quite high, actually.
Belinda Brunoli 50:54
We’re only talking about the kids that survive. What about the ones that don’t.
Megan Gilmour 50:58
Well, indeed, and it’s an interesting one, because one of our team members, Sarah, I mean, we work in this – the Disability Standards for Education cover these children for adjustments at school, which we’ll talk about in a moment.
But I’m just simply trying to say we’re in this every day, and on one website last week, just looking for something else in one place, on one website, one government website stated that siblings or carers, young carers of a person with a disability, that means a parent as well, have by extension, they are able to get those Disability Standards provisions by virtue of caring for someone with a disability.
And so, our reasoning was, this would include siblings, because there’s nothing to address the siblings’ educational journey. There is to address the child who has medical condition in this case, but we just found that.
I don’t know how it hasn’t come up before, but it’s also just hidden in there. So now we’ll be telling everybody who’ll listen about these because those siblings can get adjustments, extra time, all the things that the Disability Standards provide for will be able to be applied to siblings, I reckon. That’s the argument, whether schools are able to accommodate that or want to, that will be probably the more challenging part, but it’s there.
Now we talked about there not being enough data to be able to precisely determine the number of the school age population,
Vonnie Hastings 53:12
I couldn’t find anything in Australia. But would you believe I looked up – and this is a central brain tumour in the United States, and they basically, obviously with great numbers over there, and an estimated 3,920 new cases of primary childhood brain tumours diagnosed in each year.
But can I just say, once again, that would be the same type of sort of data that we collect here, and I think like nearly 14,000 kids living with a brain primary tumour
Megan Gilmour 53:44
in the U.S. or Australia?
Vonnie Hastings 53:46
The U.S. But once again, I hesitate to accept what they’ve picked up – how they have
Megan Gilmour 53:52
yes, yes.
Vonnie Hastings 53:53
It’s just, how they’ll pull the data.
Megan Gilmour 53:57
So, if we were to sort of briefly list the side effects or complications, we’re saying that there’s acquired brain injury, there’s developmental delays or issues, there’s potentially anxiety and mental health issues or trauma that’s sitting in the background there. There’re medication related issues, there’s learning delays, potentially. What else are we seeing?
Vonnie Hastings 54:24
It’s the cognitive that you’ve got to be really in tune with. It’s the way the brain works after it’s had all the injuries to it. And a lot of children learn in a different way. They learn much more slowly. They remember much more slowly.
So, with their peers, that IQ gap gets wider and wider because they can’t learn as quickly. In a classroom, perhaps noisy they don’t hear properly. They can’t process the information that’s coming through, and therefore, in tests, they really should be in an isolated room, give them time to finish at their own level of speed.
And some children have vision issues because of the tumour. Some children have hearing issues because of the treatment. And so, they have an FM situation on board –
Megan Gilmour 55:17
Yes, that’s a lot of vulnerabilities for school. And Belinda, you mentioned that children in these circumstances do miss a lot of school. Could you just elaborate on that a little?
Belinda Brunoli 55:33
Oh, they miss school prior to being diagnosed because they’re unwell. They have headaches, they have nausea, so they’re missing school before it even starts. Once they’re diagnosed, basically, school’s off the cards for a good six months, purely because you’re so immune-suppressed that you don’t want to take your kid to school in between treatments.
Luckily, for my son, you know, they were advanced for their day. It was a private school, and he had, they set up something very similar to what you’re doing, but just on a laptop, so he could actually come in and out of school on his laptop. He didn’t want to, but, you know, but we made him.
But yes, just to elaborate on what you’re saying, that the fine motor skills also are affected. And the kids that are really into their sport, they can’t necessarily play sport. There’s so many complications that come with it. They don’t get all of them. Some do, yes, yes, they might have one or two that prevent them from learning in the way they used to learn. I think memory is a huge one.
Megan Gilmour 56:39
Yes, that’s right, fatigue, and because of all of that, yes, not to mention that, if, as you said, a procedure hasn’t gone well, there can be those functional issues, affected sight and hearing and other things as well. So, you’ve got the sort of, I guess, some of the core ones, but then individual children could have one or many of these different complications or side effects,
Belinda Brunoli 57:19
Very clingy, like, you know, that anxiety and they don’t want to leave mum and dad and yes, so
Megan Gilmour 57:28
And those could happen. Sorry, Vonnie, go ahead.
Vonnie Hastings 57:31
So, then you had those who look totally and utterly normal, who look so healthy, and yet they still had this invisible cognitive problem and can’t understand the work that they’ve been given and struggle with it. And the teachers find that really hard as well. And there’s invisible sort of problems.
Megan Gilmour 57:54
Yes, absolutely. And as I said before, the Disability Standards for Education absolutely are the national regulation that applies to every single school in Australia, regardless of grade, state or territory government, Catholic or independent or other faith-based school system.
It sits under the Disability Discrimination Act, so it’s designed to try and even the playing field for these kids in terms of their enrollment at school of choice, their participation on equal terms to others that they get the curriculum, that they get the additional supports via adjustments, and those adjustments would be to do with that individual student’s particular needs to enable them to have the best opportunity to reach their potential.
And technology can be used as well. So, you mentioned FM hearing devices. There’s a whole range of other things that could be used. We at MissingSchool say that access to the classroom and the curriculum and learning alongside peers, which the disability standards call for, can be attained through a two-way, digital connection to the classroom when the young person can’t be physically at school.
And you mentioned Belinda, immunosuppressants and immune compromised children needing to be away when there’s things flaring in the school that communicable diseases and illnesses. We don’t want them to get those. So, technology can be like a wheelchair ramp in a school to give that access that the disability standards call for.
So we’re really passionate about mentioning this on Live & Learn, to make sure that everybody hears and that teachers know there might not be a physical disability, but in many ways and as children get older and might not want to talk about or disclose their background, which is totally fine, is that you know that they are entitled to these adjustments, because it covers either a condition that’s been in the past or one that’s imputed for the future, or any of those things. It’s very powerful.
So, we mention it here. And just as we head towards the close, Belinda and Vonnie. I’d really love to know what are the critical times we need people to understand about the school journey, and what can we do. What can really make a school life better for young people experiencing brain tumours.
Belinda Brunoli 1:00:55
Well, I think critically, the critical time is in the beginning. If you can set the tone from the beginning, it’s really good. Get the Principal and your teachers on board, let them know all of your concerns.
If the child and the parent feel safe and welcomed, I think that just sets a whole precedent going forward, because it’s going to be issues. It’s going to be a lot of school missed for various reasons that we’ve stated before.
And I think if you know that you’re being supported and you’re not going to be judged. I think that’s really important. There’s going to be so many times through your life. I mean, we did the tutoring for the kids, and there’s different stages, I think, obviously in every child’s life where it’s really important that they don’t fall behind.
Megan Gilmour 1:01:47
Yes,
Vonnie Hastings 1:01:48
Yes, that transition.
Megan Gilmour 1:01:50
Yes exactly the transitions between school years, between treatment and return to school, between primary school and high school, and high school and senior and leaving school, changing schools, adolescence. I think the transitions just about cover everything.
Vonnie Hastings 1:02:14
Yes, I think, I remember, I mean, in part of my role was literally to visit the school, to just talk to the teachers in the classroom about whatever patient it may be, and as they were finishing their treatment, I felt it was really important that, as well as the information we could send the school with the parent’s permission, that the families really developed a very robust, a very strong communicate with the school, the house teacher, be it the class teacher, and to ask for ongoing meetings to review how the child is progressing.
But also, for the child to have that positive feedback, for them to be part of it after the initial talk, so that they had some positive feedback about their progress and that they could say, I found this hard, and please help.
Because, as you mentioned, the disability that you have an IQ of about 70, you don’t have support in the schools. A lot of our kids are just above that 70. They are actually much more intelligent than 70, but that’s how they learn.
And so that strong connection. Teaching families that perhaps a sibling pick up how much homework is needed, so the child is not rushing to try and put it down, or an iPad is allowed to take a photo on the board.
Megan Gilmour 1:03:51
Yes, so we call these adjustments, and they can be built into an Individual Learning Plan, which can be modified like, as you’re saying, Vonnie, across time and across the child’s school life that those adjustments can adapt and respond to
Belinda Brunoli 1:04:11
They need adjustments and adaptions for assessment like you were saying
Megan Gilmour 1:04:15
Exactly, yes.
Belinda Brunoli 1:04:16
You know, having a ticking clock for those kids in an assessment situation is like a time bomb, so they can’t cope with that, so they have to make adjustments there as well.
Vonnie Hastings 1:04:25
And a lot of the tutors we employ, they know that they give the strategies to the kids to take information down, when they’re trying to learn, because they know the way their brain learns.
Megan Gilmour 1:04:38
Yes.
Vonnie Hastings 1:04:39
Yes. You just need that.
Megan Gilmour 1:04:42
There may be they get maybe speech therapists involved, and occupational therapists involved as well. Would that be?
Vonnie Hastings 1:04:48
We do, if necessary, yes. So Brainchild obviously doesn’t have money that’s pouring in. So, we know NDIS is around, and we know that NDIS will cover all of the therapies, but it doesn’t tend to cover and so – when I say that I say it with a little bit of – not every child will get it, and some children never have it because they’re not NDIS allowed,
Megan Gilmour 1:05:17
But they don’t meet the condition of permanency, somehow.
Vonnie Hastings 1:05:24
And sometimes they can have a brilliant assessment done by therapists, sent into NDIS, and then it takes months to put into place, and we know that the earlier the intervention provided, the better.
Megan Gilmour 1:05:38
Yes.
Vonnie Hastings 1:05:39
So, we come forward then at Brainchild, and support families with perhaps occupational therapy, physiotherapy, speech, but also psychological counseling, because this is to get them to the confidence level that they can face –
Megan Gilmour 1:05:54
Yes, yes, and to address that trauma and address their experience that they may not even be able to name, but that lives in their body. And as my children have both shared that, or I’ve witnessed at different ages and stages of their life. They’re reprocessing that experience as that older person and with more maturity or more understanding about what a 10-year-old, their 10-year-old or their 13-year-old self, couldn’t say, but now they’re putting words to that or having particular feelings about it, you know, pain about it.
Belinda Brunoli 1:06:41
It can go both ways, because I had my middle son, we had a lot of trouble with him for a few years. I think it’s just all that the attention wasn’t on him.
Megan Gilmour 1:06:53
So, yes, you know, look, the siblings is – this article I’m sharing with you was really cathartic for my daughter and I because, you know, she went through significant mental health issues as a young adult, and it was trauma to do with, it was unaddressed trauma to do with her brother, and the complexities of all of that, including the feeling she had towards him because of what she went through. So, it’s yes – at the same time as absolutely loving him.
Belinda Brunoli 1:07:29
So, love each other to death, but then that also brings guilt for the parent, so it’s so full of trauma, isn’t it
Megan Gilmour 1:07:36
It is. We’re humans, and it’s complex, and in another way, it’s also quite simple. When we stand back and look at the journey, and we know if you came out of that and didn’t feel anything, that would be problematic.
Vonnie Hastings 1:07:53
It’s yes, somehow, I think you as a parent, I’m not sure, but you put it to one side, you deal with what you have to deal with. You know?
Megan Gilmour 1:08:06
Yes, you do. You don’t have a choice. It’s like you can’t. And our nervous system is almost deranged across that time.
Belinda Brunoli 1:08:22
Yes, back to your question, just thinking as we were just speaking. You know, when you are let go from hospital? Yes, that is when I crashed and burned.
Megan Gilmour 1:08:35
We did too.
Belinda Brunoli 1:08:36
Basically, when Thomas went back into school, he had an illness straight after, so you couldn’t go back, but by the time he went to school, it was so hard to leave the cocoon of support that we had.
We were so traumatised, by then, I was on antidepressants, and, you know, I just couldn’t cope with life. Then you’re taking them and all of a sudden you’ve got to give them back and allow them to be independent.
Megan Gilmour 1:08:57
Let them go.
Belinda Brunoli 1:09:00
That’s another really traumatic moment in the whole school process, because it’s so hard to let them go back in and not feel like you want to ring the teacher every 10 minutes and check, you know, yes, great.
He was seven or eight at the time, so he wasn’t a little child, but it doesn’t make any difference. He’s been in my care for so long, and I’ve watched him heal, and now I’m having to leave him.
Megan Gilmour 1:09:25
Yes, it really is. All of it’s a complete exercise in trust at a time when your faith in anything has just been absolutely – your faith in life has been shaken, and at the same time, you need to completely trust. There’s no option other than to…
And I think it really is a nice moment to come back here as a sort of rounding and remembering what Vonnie was saying at the beginning, about one step at a time.
I remember being in the kitchen 14-16 months into our journey at the Sydney Children’s Hospital oncology ward kitchen and a newly diagnosed family would come in and say, so, tell us what we need to know, and tell us about the journey. And I’d just be like; you’re not telling them anything. You’re not saying a thing. You’re just going to say, just take one step at a time.
Belinda Brunoli 1:10:34
Hospital life is a whole new world, and you have to adjust.
Megan Gilmour 1:10:38
Yes, and that was the most honest, truthful and helpful thing that you could do. And I’ve actually applied that in my work. I just say it’s basically one step at a time. You know, you can only solve in the moment. You can think about things, you can plan things, but in these cases, planning can even go right out the window.
Belinda Brunoli 1:11:05
Every journey is different, isn’t it? We all have a conception of what it’s going to be like, but
Megan Gilmour 1:11:11
It is. And then, you know, the more conversations I have like this, I realise, and this is also what we wanted to tease out with Live & Learn, is, that might be called something else, and the medical diagnosis is clearly different from one thing to another and the treatments and all the rest of it, but there’s so much about the lived experience that is actually the same for all of these things.
And I think that gives me optimism that we can do better at kind of codifying, particularly in schools, what that baseline level and approach is, while getting the essential just-in-time right elements for the young person where they’re at with their own medical condition or mental health condition that they’re living with.
And yes, because it is a full, fully human experience, that’s what I will put it down to, with all the same feelings and challenges.
But it’s been really, really amazing. And this brings me to my last question, and that is, have we missed anything? Is there anything about school quality of life that we just really need to punctuate this moment with because it’s something that our audience needs to know.
Vonnie Hastings 1:12:50
Look, it almost comes back to that one day at a time, and the patience you need to see the little improvements that your child may make. But also, I think it’s so important that the school as a whole, from the Principal down to the child, is totally aware of how best to lead each child through.
So, each have a different – it may be physical, it may be cognitive – problem, but you talk about a policy that’s national number one, that so needs to be looked at and opened up for a whole lot of people who miss school.
But number two, there needs to be that community in the school that allows that child to blossom. Am I looking at this too airy fairy? But that’s what I feel. Each child is so important in its own right and needs to have that individual consideration.
We don’t seem to have individual plans here in Australia like they tend to have in America, and I was lucky enough to meet up with people over in America – who – each child was given a plan just suited for them.
And, you know, it was changed as they grew. But that really benefited a lot more. But to have that community support in a school in the nation to look out for these young kids. They deserve it so much. They really do. All of our kids do.
Megan Gilmour 1:14:19
They do, and they have so much potential. And in more recent times, you kind of develop in your thinking about things, and all of a sudden, you see the same thing, same set of things, but you see them arranged differently.
And for me, it was this last year, or the end of last year and early this year, where I really started to say, you know, we talk a lot about including these children, we talk a lot about helping these children. We talk a lot about what we need to do for these children.
And what we’re really missing is what contribution they can bring us, and what gifts and talents and skills can they present and bring forward into our schools. And what is their contribution?
That’s actually the key question here, because if we can look at it like that, I think we can get more right. You know, we’re not just helping you. You’re actually helping us, and that’s often missed, I think
Belinda Brunoli 1:15:29
Absolutely and it’s so rewarding to see them blossom like we’ve had a child that we tutored a while back now, who, over a course of a few years, became school captain.
Megan Gilmour 1:15:40
Well, this is it to us.
Belinda Brunoli 1:13: 42
We felt so proud, like we take on all this.
Vonnie Hastings 1:15:46
I remember, oh it was just one of those things. She was in Toowoomba, she was actually from up in the golf area, she was at boarding school. She was struggling after her benign tumour was removed, to remember things – where she’d been, what people had said, and so we put together, we gave her an iPad.
My husband was an architect at UQ. He managed to get it to the young man who managed to get it to his sister. She used that up front to take photos of where she’d been, what had happened, what was the information she needed?
Megan Gilmour 1:16:20
Adaptive
Vonnie Hastings 1:16:21
Yes, and it just gave her the confidence to push through. So, when she became school captain, we all went ‘Yes!’
Megan Gilmour 1:16:31
I know it’s such a beautiful moment, and these stories are, they just give us so much validation for the work that we do. And I had, we’ve had a case similar to what you describe, where this young man was, – his numeracy and literacy, he wasn’t even getting reports because there wasn’t enough to say and all of this sort of thing. And had a dream to be a dentist.
And we provided the technology and the things that his mum tells us, and I met her in person the other night and she was sharing and thanking us so much because he was now, through the technology, coming first in science and maths and having all these incredible academic achievements, even, you know, with having a new diagnosis.
And I said, all we did is provide a metal pole with a screen on the top of it, and the base and wheels. And that’s what we did. Everything else was him, you and the school.
And I said, it also goes to show that, unlike, you know, most people would think that it’s the condition. And she was even saying it was his health that was holding him back. And I said, but clearly it wasn’t, it wasn’t his health. It was he didn’t have the access, and once he got the access, look at what he could do, look at what happened. And to me, that is so simple,
Vonnie Hastings 1:18:22
Yes,
Megan Gilmour 1:18:24
A really simple thing to do, so and with, but with profound, like, your example, profound outcomes,
Belinda Brunoli 1:18:33
Yes,
Megan Gilmour 1:18:34
yes, because these kids really have some grit and some,
Vonnie Hastings 1:18:38
They have so much courage.
Belinda Brunoli 1:18:40
I’m sure – I think they’ve all been here before, these kids.
Megan Gilmour 1:18:45
Yes, so we owe it to them for all of the lifesaving treatment. We owe it to them to make sure that they can have a life worth living on their terms.
Belinda Brunoli 1:18:55
Really good point. I like that.
Megan Gilmour 1:18:56
Yes, and your example, Belinda, of your son, is just a great one for everyone to take away.
So, what’s your call to action for brain and spinal cord tumours in seven words or less?
Belinda Brunoli 1:19:10
Oh, my God. I hadn’t thought about that one.
Vonnie Hastings 1:19:14
Believe that there will be better tomorrows.
Belinda Brunoli 1:19:19
Yay.
Megan Gilmour 1:19:21
I love it. People always go ‘I don’t know’ and then they just wham. They come out with something
Belinda Brunoli 1:19:27
That’s perfect Vonnie – thank God she’s on the ball.
Megan Gilmour 1:19:33
It’s so good. Now our shout out is to Belinda and Vonnie for joining us today and being so generous with your lived experiences, your skills, expertise, knowledge, wisdom. We really are so grateful to have had this conversation and to share it with others.
And a big shout out to Brainchild Foundation. You can find them over at brainchild.org.au [https://www.brainchild.org.au]. Go there, give generously, support in any way you can, tell people about Brainchild and yes, whatever they want you to do, do it.
So, thank you for joining us today. Vonnie and Belinda. It’s been a wonderful conversation.
Vonnie Hastings 1:20:24
Thank you so much for having us.
Megan Gilmour 1:20:27
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 missing school.org.au, because every dollar makes a difference.
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