RECORDED Fri 22 Nov 2024
SUMMARY KEYWORDS
brain cancer, childhood illness, dainere’s rainbow, pediatric palliative care, delayed diagnosis, symptom awareness, sibling impact, school challenges, social isolation, research funding, quality of life, support network, mental health, educational barriers, family support
SPEAKERS
Jarrett Anthoney, Megan Gilmour
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need. Hi, I’m Megan Gilmour, MissingSchool co-founder and CEO, and this is Live & Learn.
This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
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 Jarrett Anthoney. Jarrett has turned the loss of his sister, Dainere, who died of brain cancer at 15, into a powerful legacy of advocacy. He co-founded Dainere’s Rainbow to raise awareness and funds for childhood brain cancer.
Under Jarrett’s leadership, the charity has raised over $740,000 for childhood brain cancer research. In 2016 Jarrett successfully campaigned for a dedicated pediatric palliative care nurse in the ACT, continuing to fight for better support for children with brain cancer and their families.
Welcome Jarrett, we’re so excited to have you on Live & Learn today.
Jarrett Anthoney 01:48
Thank you so much. I’m very excited to be here with you today.
Megan Gilmour 01:52
So, Jarrett, today, we’re here to talk about supporting school connections for students with complex medical and mental health conditions. Let’s dive right into the questions.
Jarrett Anthoney 02:03
Sounds good to me.
Megan Gilmour 02:05
Tell us about how brain cancer impacts kids and why it’s something every Australian needs to know and care about.
Jarrett Anthoney 02:15
Well, brain cancer impacts kids in a massive amount of ways. I think I could spend hours talking about all of those individual ways. But I think one of the main reasons why Australians need to be aware about brain cancer in children is that it is the number one disease killer of children in all of Australia.
Last year, there was 35 children who died from brain cancer here in Australia. And unfortunately, brain cancer is a very taboo subject. I think people want to push away the idea that a child could have something so drastic as a brain cancer.
And children who do suffer from brain cancer. Their whole life changes. Everything becomes far more difficult than it used to be. Everyone’s perception of them changes, which then in turn, their internal perception of themself is also affected, which obviously affects their mental wellbeing as well. There’s just a very long list that I could go on about of how brain cancer affects children in Australia.
Megan Gilmour 03:31
Yes, and this is definitely something that every Australian needs to know and care about, and obviously a very deeply personal subject for you with your sister, Dainere. And I’d like to dedicate this episode of Live & Learn to Dainere, and the journey that she, she went on, which I’m sure we’re going to hear more about as we as we go deeper into our questions.
So many people probably assume things about brain cancer. I mean, one of the things that you’ve said there is maybe it’s not understood, and then maybe it’s so confrontational that it just gets shut down. What’s the million-dollar question you get from parents or loved ones when their child is diagnosed with brain cancer.
Jarrett Anthoney 04:28
I think it’s very hard to say that there is a million-dollar question, I suppose. From experience, as well as the experience of Dainere’s Rainbow, being able to communicate with other families going through similar situations, there’s always a million questions inside, but you can’t quite string words together to actually put those questions out there.
But I think if there was one question, it’s probably just a single word, which is why? And I think it just comes back down to that lack of understanding that Australia as a whole, I think, has about brain cancer in children.
Megan Gilmour 05:08
Yeah, indeed, and it’s, I guess, for parents and families, it’s not just why, but why us? Why my child, why my sister? And could we have prevented this? What have we done wrong? And that whole, you know, shock of that diagnosis as well.
What’s the most important thing that you want them to know?
Jarrett Anthoney 05:31
I think the most important thing that I would want families to know is probably that, although it feels like it, you are not alone. I know when Dainere was diagnosed with her brain cancer, everything was a complete shock. Didn’t really know how to feel, and it just felt very isolating. It felt like there was no one to talk to about it originally, and I’d imagine that people still would feel the same, even now.
You know, 15 years after Dainere was originally diagnosed with her brain cancer, I think that sense of isolation is something that would still hit families hearing that news.
So, yes, I think just know that you’re not alone. There’re other people who have gone through the journey, people going through the journey, people who will go through the journey as well in the future. And that is something that Dainere’s Rainbow are trying to achieve, one of the things we’re trying to achieve, at least, is building a greater support network for families going through similar situations, so that they can reach out and ask questions and hear real life stories, so they don’t have that feeling of being alone.
Megan Gilmour 05:44
Yes, that’s wonderful to have identified that experience in your own family, and yourself that’s led you to want to create a system of care and even advance research for a cure, and to be able to turn your own pain into something positive that can help other people through their pain.
So, we want to acknowledge this amazing work, your nomination for the Australian of the Year awards here in the ACT, just for this incredible organisation to give people that – to fill that gap in loneliness and isolation, in in their pain.
Jarrett, we know what brought you into the world of brain cancer. Would you like to share more about that part of the journey for you?
Jarrett Anthoney 08:04
Yes. So, in 2009 my younger sister Dainere was diagnosed with her brain tumor.
It came out of nowhere. She was she wasn’t too well before the diagnosis, and doctors were having trouble trying to actually diagnose what was going on with her, but still to come home from school and hear that Dainere had rushed off with mum in a lightweight plane to Sydney for treatment at Sydney Children’s Hospital was just an absolute shock.
And my older sister, Nalani and I, we basically that night, we packed up everything and then took off to Sydney first thing the next morning with dad. Yeah, just finding out that Dainere had brain cancer was, yes, heartbreaking.
We arrived in Sydney just before Dainere went into her original surgery as well, which went for 10 hours, which is very long.
For four years, Dainere battled with her brain cancer. In her last year of her life, it did relapse into her spine. It was almost looking like it was under control, and she might have a little bit more time left, but unfortunately, it did move down into her spine, which then we had the news that Dainere had 12 months left to live, basically at that point.
And just that last year of Dainere’s life was just watching her body basically deteriorate because of the cancer, which was extremely difficult, just watching the person who she was basically be stripped away from her.
And then in June 2013 on the 24th of June, which was 20 days after my 18th birthday, actually, we were at home, and Daniere was having trouble breathing, so we called out the palliative care nurse to sort of come provide some assistance in the home for Dainere.
And by the time they came to the door, all of us were sort of frozen. It was mum, dad and my older sister, Melanie, and I with Dainere there in the lounge room. I went to answer the door so we could let the nurse in to help out, and when I came back to the lounge room with the nurse, Dainere had already passed at that point by the time I came back in the room.
And yes, since 2013 and then obviously, Dainere’s Rainbow was established in 2014 on February the eighth, which would have been Dainere’s 16th birthday. Yes, Dainere’s Rainbow has been trying to raise that awareness and funds for pediatric brain cancer, trying to make a difference so that no one else has to suffer the way that Dainere did.
Megan Gilmour 11:08
Yes, and we acknowledge your loss, and I think this is the moment that we come back to what you said at the beginning, which is, unless we tell these stories, and unless we hold this space for what actually happens for kids, we won’t be able to progress in a way that enables progress with research, progress with cures, progress with care.
And to remove those taboos and to actually be able to hold space for the real journey that feels so uncomfortable for people to listen to and hear. But nothing compared to what these kids go through and the fight that they have.
So, knowing all that you know, and thank you for being so generous to share something that’s so painful, knowing all that you know, what’s your biggest hope for kids with brain cancer, their families and loved ones when navigating brain cancer?
Jarrett Anthoney 12:18
Obviously, ideally, it’d be amazing to have a cure, but more realistically, and first and foremost, I think receiving support. It felt like – I mentioned earlier that it felt very isolating when Dainere was originally diagnosed with her brain cancer. So, I think there needs to be a greater support network for families so they can reach out to people for those millions of questions they have.
And I just think as well, the statistics and basically the survival rates for childhood brain cancer need to drastically improve, as they are very low. So, I think having ways for families and for the child with the brain cancer to live the best life that they can in the short time currently that they have at the moment after their diagnosis.
Megan Gilmour 13:20
Yes, and hopefully, organisations like you and pushing along this agenda and opening up those taboos will send much, much, much more money towards brain cancer and that research that we need for cures, and as you’ve said, that quality of life in the interim.
What are some of the common and perhaps frustrating public misconceptions about brain cancer, and how have you seen this impact families, including your own?
Jarrett Anthoney 14:01
I think just again, the fact that hearing that childhood brain cancer exists is very confronting to society.
We actually have a story that sort of relates to this. We – Dainere’s Rainbow – we have lots of events where we try to raise that awareness and funds for brain cancer. And it was at a barbecue, I think probably about 2014, 2015, and a lot of the people would come up and ask about what the barbecue was raising money for.
The majority of people who came up hearing the story were very understanding, and would say, you know, sorry for your loss or such a great cause, good on you for starting this charity, things like that. But there was this one person who came up and asked what it was for, and then I explained the story of Dainere’s Rainbow and how it was my younger sister who died from a brain cancer. And this person went, ‘Oh, ew, that’s yuck’ and just walked away. Which, again, I think goes back to that it being taboo.
It still sticks with me that, because that was not very pleasant to hear. It was still very fresh after Dainere’s passing. But it sort of reminded me of all the times that when Dainere was going through a treatment. And she was requiring to be in a wheelchair, and she had wigs. Sometimes she didn’t always go out with us in the wigs, so she had a mostly bald head.
So being out in public, a lot of people would sort of look towards Dainere in the wheelchair and sometimes pull their children away as if she was contagious, which was very upsetting for Dainere and obviously very upsetting for our family. So again, I think it’s just people seeing it as taboo and not really understanding brain cancer in children is very frustrating,
Megan Gilmour 16:08
Yes, and what we’re really dealing with there is people’s own discomfort with – they can’t process that emotionally. And this is why our conversation and conversations like this are so important.
And to honour, you know, to honour the kids who are going through it, but also to understand something that you mentioned in the beginning, which is, they’re not their diagnosis. While that is the most imposing thing, there’s a person there who existed before the diagnosis and is still there at the center.
And that identity is, you know, trying to maintain that identity throughout all of this and recognise the person there is also profoundly important. So again, thank goodness for your organisation in supporting advocacy awareness, not just raising money.
How many Australian children and youth are living with brain cancer right now?
Jarrett Anthoney 17:30
It’s hard to give an answer for that, because the statistics for brain cancer here in Australia are very broad, even to the point that they class that as just anyone between 0 and 19 years of age. So, it’s there’s not a specific statistic for that, but in this year, there’s currently 129 children diagnosed this year with a brain cancer, which, if we just go back a couple of years to 2021 it was 131 diagnosed.
So, it’s always sort of around that same figure. And hopefully there’s no more diagnosed with still about a month and a week left in this year.
Megan Gilmour 18:15
Yes, and also, that’s year on year, right? So, in any given year, there’s more children than that living with it.
Jarrett Anthoney 18:29
Yes, yes.
Megan Gilmour 18:30
Yes. And, and is there a risk of delayed diagnosis? You did mention that there was some other sort of precursors, and it was hard to identify, it took some time perhaps. Is there a risk of delayed diagnosis, or are most cases picked up easily?
Jarrett Anthoney 18:50
The majority of cases are definitely delayed diagnosis. Unfortunately, I think the symptoms of brain cancer fall into so many other potential problems, and I think it’s just very hard to diagnose one of the first things that people associate as a symptom, which is a symptom for brain cancer, is headaches, which Dainere basically didn’t have that as a symptom at all.
The majority of her symptoms were that she was vomiting, she sort of lost her sense of balance, and she was very tired and lacked energy, so it’s very hard for it to get diagnosed.
I think there definitely needs to be more symptom awareness, just because it’s very delayed at the moment, currently for diagnosing. We do, on the Dainere’s Rainbow website, have a whole section on symptoms, as well as on social media, trying to share symptoms for symptom awareness as regularly as possible, just because if we can reduce that delay time in a diagnosis, it could potentially make a large difference.
Megan Gilmour 20:12
Yes, and I can imagine that, given what you’ve said, that brain cancer is not the first thing anyone’s running to when these symptoms present, including GPs and other practitioners.
So, there’s that sort of going through a time period where ‘Will this resolve? Could it be this? Could it be that? No, we’ve ruled that out’ and all of that sort of thing. Based on what you’ve shared I can see how delayed diagnosis could be part of the picture here.
What kind of complications to kids with brain cancer, face?
Jarrett Anthoney 20:58
I feel like …. there’s definitely not enough time today to go through absolutely all these. Obviously, there’s a plethora of things that I could go through here. I think the main obvious ones, though, would be that the actual illness itself just taking an absolute toll on the body.
Obviously, it’s the brain. The brain is very, very important obviously in our human body. So, when it’s not able to be at its best, there’s problems everywhere through the neural system.
I think, as well just the medical treatments that are involved with brain cancer, chemotherapy, radiotherapy, and all the surgeries and everything else, they really attack the body. They do help get rid of the bad cells, but they also take some of the good cells as well while they’re going, which obviously doesn’t help.
I think as well, the social aspect of life for a child with a brain cancer is something that’s heavily impacted and is a large challenge for them. I mentioned earlier about the perception that people have of a child with brain cancer, and it’s hard for a child, I suppose to go back to school.
If they can go to sport again or go back to their church or social club, whatever it is that they do, they are still the same person, of course, but everyone just sees the brain cancer patient after the diagnosis, unfortunately, which, again, this makes a huge impact on their mental wellbeing. And, yes, I think their challenge is just daily, just doing all the things they would have done beforehand are now just way more difficult or even impossible after diagnosis.
Megan Gilmour 23:02
Yes, and having chemotherapy in itself, the treatments are so brutal, and as you said, affect every part of the body, heart, lungs, liver, bone. It’s just absolutely brutal. Of course, those treatments need to be given to deal with the problem, to deal with the disease, to deal with the cancer, but they do take a huge toll on children’s bodies.
Jarrett Anthoney 23:41
Yes,
Megan Gilmour 23:43
And I’m with you when you say it’s quite impossible to convey, even in a chat like this, just what that looks like in real life.
I think you can answer this one really well. How are siblings and peers of kids with brain cancer impacted? And what should families and people out there be across, teachers in schools even be across?
Jarrett Anthoney 24:16
Yes, as Dainere’s older brother, hearing her receive the diagnosis was, as I mentioned, heartbreaking. There was… there was many times where I felt absolutely helpless, because there was nothing I could do. Just waiting for the doctors to do their thing in the hospital, basically.
And a lot of the time I was back here in Canberra, and Dainere was in Sydney for a treatment, just because there is no possibility of the treatment being done here in Canberra, so she was in Sydney Children’s Hospital. Just being far away from her at, you know, at the age she was 11 years old when she was diagnosed, and I was 13 turning 14 that year, it was very, yes, I just felt very helpless, I think.
And then there were times when, you know, I wished that it was me who had it, rather than her of course. I didn’t want to see my younger sister go through everything that she went through. I just felt guilty being able to do like live my normal life while she was stuck, enduring what she was enduring.
School was a real challenge to go back to as well. We were away for about a week with Dainere initially, and then came back to Canberra to school. And when I returned, all the teachers and all my peers were very, very nice, sort of not really sure how to deal with the situation, of course.
But I found that very unsettling. I think I just wanted a normalcy with everything that was going on, and having the teachers be overly friendly – they were always friendly, but overly friendly. But also, to have people in my year level who weren’t my friends and who weren’t necessarily treating me with kindness before the diagnosis, for that first week or two of me returning to school, they were very nice to me as well, which that made me feel very uncomfortable.
I just wanted things to feel normal as much as they could. I think, it’s just families just trying to create a normalcy, and not like, obviously the brain cancer is there, but just trying to live as normal as possible, just to help support the sibling.
So, in my case, Dainere, when she was in Sydney, you know, we would do phone calls and just trying to update her with how school was. Or for me, I was letting her know how my running training, or any races that I maybe did on the weekend went, just to let her know. And when she was in Canberra, she came out to those running races and watched me run them, which was awesome. But yes, I think just trying to create that normalcy, and just trying to, I suppose, understand more about brain cancer.
Megan Gilmour 27:36
Yes, yes. And again, thanks for sharing so generously what has been an obviously devastating situation, and to reflect on the fact that what you’ve described there as a sibling, is a phenomenon that we hear across the board.
And also, at the same time that people are making some kind of difference about you in your social circles, you’re also feeling like you’re having a completely different experience in your life than anyone else around you, while you’re trying to be normal.
Jarrett Anthoney 28:21
Yes
Megan Gilmour 28:23
And you said there wishing at a point in time that it had of been you. And I think this is also something that happens for siblings as well, and the guilt around being the well person when your loved one is going through something, these are all really critical things for people to understand, because as a young person, you’re also in your own school journey as well, at the same time.
And all of this is going on top of all of the other things that go on in a young person’s life without that, and it’s really, I do want to acknowledge that in a lot of the conversations out there about children and young people with serious illnesses, life threatening illnesses, critical injuries, that sibling component of it is not talked about often enough.
It is a really critical part of what the whole family unit is going through, including the way that parents are trying to navigate that journey for all their children while there’s obviously a very critical situation with one child.
So, did you experience a lot of anxiety across that time around the diagnosis and what was going on?
Jarrett Anthoney 30:04
Yes, I felt very unsure of everything going on, and I just didn’t really know who to talk to. Like, obviously, there was times when I could talk to mum and dad or my older sister, but, yes, it was just a very, I guess, just terrifying time to navigate.
There was so much going on, you know, being a teenager with all the usual teenage problems on top of having a younger sister who basically being 13, turning 14 years old, hearing that your younger sister’s got brain cancer, which means, you know, she’s going to die at some point over the next few years, was just a lot to take in. And I’d say it definitely was a very anxious time during that initial diagnosis.
Megan Gilmour 30:54
Yes, and grief – grief for the life that you imagined you were all on. And then this has taken a sharp turn, and a diagnosis of that nature, and holding all of that is just massive. So, thank you for sharing that part of the journey. It’s really important for people to understand and for schools to understand as well, in that young person’s life and what might be going on.
What’s the current population – if you know – of school aged children with brain cancer? How accurate is this data and is it tracked?
Jarrett Anthoney 31:44
Again, there’s not a lot of tracking for data for things like that, unfortunately. So, the only sort of age bracket they have for this is just the whole bracket of 0 to 19 is childhood brain cancer. So unfortunately, there’s not anything specifically for schools that that we know of.
Megan Gilmour 32:02
Yes, and that, as we say over here at MissingSchool, no data is data. You know, we need to pay attention to the fact that that’s not being framed in a certain way, for example, for the kinds of support that might be needed for these kids in school. So, I guess the next question leads on from that. Do kids with brain cancer currently miss a lot of school, and why?
Jarrett Anthoney 32:33
Yes. So, it’s probably easy to answer this one from the perspective of what Dainere went through with her schooling. When she was obviously originally diagnosed, even prior, she was having difficulty being at school with being so ill. But from the diagnosis, obviously she spent a lot of time in Sydney and the original treatments were very brutal on her body, so she was away from school for a while.
When she was able to come back, it was never as a whole day it was only small sections of a day. The majority of the schooling that Dainere had during her journey was the teachers who were happy to sort of put together the assignments and things like that into a word document, blow up the text so it was big enough for her to read, because that became a challenge to her as a side effect. And she sat there either in the hospital in Sydney or at home here in Canberra, working through the assignments that she’d been given.
She was very eager to learn, and I know that when she was first away from school and well enough to be learning, we did communicate with the school about the possibility of being able to have a recorded class that maybe she could be a part of. I think it was through Skype, probably at the time, but there were privacy related issues with that, so it was unable to happen, unfortunately, hence the teachers sending off the work to her.
But yes, Dainere wanted to learn. She wanted, I suppose, that normalcy, I guess, of having schooling in her life. When she was at school, she found it very hard to concentrate. She was very tired. She could only stay for a certain amount of time. All these things had been affected from her brain cancer. So, her handwriting got a lot messier, it got a lot larger. Hearing was affected. She ended up requiring a hearing aid. So, when she was at school, there was a point where teachers had a little FM transmitter microphone so she could hear things a bit better in the classroom.
Yes, everything was just very challenging, but she wanted to continue learning. And I think that you know something like MissingSchool is very amazing. Dainere would have absolutely loved that back in 2009 to 2013 for sure, so she could have that sort of normalcy, attending school.
She actually did her – she was in year 10 when she died from her brain cancer, and it was, I think two or three weeks before she died that she did her midway through the year exams for year 10 – managed to persist through them. The quality probably wasn’t as high as what she would have liked, but she managed to get through them still.
Megan Gilmour 35:49
Well, I really want to take this moment to say, you know, please pay attention to what Jarrett just said there, because what we’re hearing is at an end-of-life stage, Dainere still was showing up to do her exams, and that was because she was identifying with who she is as a person, not with the disease. We’ve heard just how brutal this journey was for her, and yet she wanted to do her exams. That’s what was giving her meaning and identity as a student and a learner.
And we have provided telepresence that is two-way digital connection into the classroom for students like Dainere at that time in their life, and it’s because there’s nothing that matters more than that day for these kids, and to be amongst their peers, to be able to see what’s happening and going on and having a shared meaning in your own life, in your community.
That’s what our work is, has been all about, and one day, we want this to be business as usual, and when that day comes, we’ll bow and leave and leave that to happen every day in schools.
Jarrett, what other critical times in a kid with brain cancer’s school life, would you say, given the extraordinary diagnosis and journey that they’re facing?
Jarrett Anthoney 37:38
I think that they really find it hard to navigate those social settings within their peer groups at school. Everything is different once the diagnosis comes through and they’re just trying to live as normally as they can be, be the person that they are, not the diagnosis, as keeps popping up in these questions.
I think that being able to attend school or have some form of way to do schoolwork is very important, because there is just that drive to be themselves still and not be the diagnosis. And I think that’s probably aside from, all you know, being able to concentrate a school, being able to have the energy to actually complete work and things like that, I think the biggest thing is probably just being able to stay who they are and actually do what they wish to do.
Megan Gilmour 38:50
Yes, there’s a purpose in that for them that is vital. To have purpose in our life is so important, and to have that purpose stripped away when it it’s possible, and we’ve proved that it’s possible, adds insult to a major injury, I think. So, you know, giving life meaning and having quality of life is what we all want, and that’s available right now to us while we’re here.
So, thank you for sharing your thoughts and observations on that and also calling out that very important component, which is trying to continue to be who you are in your peer groups and in your social circles, so that every day is not just about treatment and illness, this is also so critical for these kids.
What should families and schools be prepared for therefore, in this circumstance,
Jarrett Anthoney 40:08
I think probably just not to expect the amount of time, like at schooling, or whatever things were happening before the diagnosis, it’s not very realistic. The brain cancer, obviously, is a massive battle and being able to produce schoolwork or play sports or play a musical instrument, whatever it is, it’s unfortunately from the treatments and the brain being so important, those things are never going to be quite as competent, I suppose, as what they were before. But I think it’s more so important to keep those things going for that person to feel like themselves.
And I do just think there needs to be more knowledge and understanding shared within families, within school groups, within other social circles, just so people have a greater understanding of what brain cancers basically do to a body and, yes, just greater education about everything.
Megan Gilmour 41:26
Yes. So, I’m hearing there that, you know, it’s not just all about academics, and while those opportunities are there, you mentioned Dainere’s exams, which was obviously really important for her. But that school plays a role in so many other ways, and we talked about taboos, and we talked about the fact that people don’t like talking about this, and that people don’t like talking about death, but that this is a part of life, and even for young people to be able to hold space for that in a way that is appropriate and supportive and enables quality of life and meaning is what’s available here.
But we can’t do that if we’re tucking that away in a corner, because we’re not comfortable. So I would just add to what you’ve said, those things, and that we have definitely provided our technology and service, and we can see a time in the future where schools do that with their own technologies, where it’s just happening every day, and that the young person is being valued for who they are, where they’re at right now, in ways that support them to be seen and heard and to be able to create and have meaning and make their contribution to our communities as well.
I want to point out that it’s not just about any of us here helping these kids or just doing that. It’s about the way that they help us all by bringing themselves and their journey, including their journey of incredible resilience, to our community. To bear witness to that is also the opportunity here for us – to bear witness to that incredible resilience and honour them in that way.
So, there’s also the Disability Standards for Education, which is the federal regulation that enables this to happen. So to have access to the classroom from wherever you are; to be able to have access to your curriculum, and do the work that you can do in the way that you can do it from hospital or home; to be able to learn alongside your peers, to see friends; and to be a member of the school community with the support that the school can provide, and what that also offers is a huge lift to the families concerned as well, and for parents who are at the front line dealing with everything that’s going on.
And to be able to have that support, knowing that in, like in Dainere’s case, that she absolutely wanted that, that that’s made easier, and not another additional burden for families is also something we really love people out there to know.
And the role that teachers can play, and peers can play, as you said, just in being able to share what was happening in your life and have those conversations. And be able to provide some kind of normalcy at a very, very difficult time is, is bringing quality of life.
So, we’ve talked through a number of things with this question, what are the biggest challenges and vulnerabilities facing kids with brain cancer at school? Is this a question that you’d like to add something to? If you feel like you’ve already covered it, we can move on to the next question.
Jarrett Anthoney 45:48
Yes, I feel like I might have sort of covered that one a little earlier.
Megan Gilmour 45:52
Yes, there’s probably some other things there that are of a technical nature, like children who have chemotherapy have increased risk in social settings because their immunity is compromised through chemotherapy and treatments and other things. But I think in this case, we’ve probably covered a large degree of complexity already.
In your work with Dainere’s Rainbow, what do you see that’s happening now to address these challenges and vulnerabilities around school, and is it enough?
Jarrett Anthoney 46:41
Well, as I mentioned earlier, it felt like there was no real support, or anyone that we felt like we could reach out to when Dainere was diagnosed. Dainere’s Rainbow has its social media, it has its website. We do all of our events.
We have created a network for families who, we’ve had dozens and dozens of families over the years, who’ve been able to reach out to us and share their story of their child or their sibling with brain cancer, and I’ve been able to share mine back from a sibling perspective, mum and dad have been able to share theirs from parents’ perspective.
So, we’ve been able to cover a lot of the family perspective to these families currently, or who have gone through it. And I think that has definitely improved this. It’s still something that we want to make even bigger, for sure, but there are a lot of families who have remained in contact, or who have passed Dainere’s Rainbow on to others, just for that real life story.
I think hearing people who have gone through something similar really helps make a difference, again, for that isolating feeling that you do feel from it, but also to hear tips and strategies or things that maybe weren’t available back for Dainere. Or challenges we faced with Dainere can be put forward to these families currently, and they can have all those issues rectified because we’re able to do so much more now with technology being better and all sorts of things like that.
It’s still something that I think can be better. There’s definitely no ‘we’ve reached the finish line – we’ve done this really well – let’s just call it.’ It’s definitely something that can just continue getting better and better and better. So definitely still something that Dainere’s Rainbow are working on.
Megan Gilmour 48:48
Yes, and that’s excellent. Just being able to wrap together all of those things that you’ve said across this conversation, and you know things to do with identity, normalcy, participation, not just being left out of things because people are making assumptions, or there’s misconceptions that that lead to, I guess, rejection of what’s going on for a person, a young person like this.
And I think both of us have said there what a crucial role that schools can play in this. And the name of the game is the schools not to try and be hospitals, we’re not expecting that, not to be able to find a cure. And you know, schools might be great in raising funds, they might be great, people might want to rally around and send food and all of these sorts of things, which is fantastic.
But if schools can play the role that schools play, and create that normality, even for siblings on these journeys where you’re not being held so lightly that it feels like your whole sort of, the perception of who you are has changed, but that you can have a place of refuge where you can just get back to business of being a kid and learning, playing, going through very critical school days.
And for kids like Dainere they can participate in the moments that they can, in some cases, that might even be just watching the class, knowing what’s going on.
So, is there anything else, Jarrett, that we should be asking about school quality of life for kids with brain cancer?
Jarrett Anthoney 51:02
I think, as you’ve just very eloquently put it, I think just having schools be schools, they’re not the doctors, you know, it’s great when they can fundraise and help out things like that. I think just creating that normalcy for everyone in the family affected by the brain cancer, I think that is very key.
I think schools just being the good old reliable schools that they are makes that huge difference from a sibling perspective, from parents’ perspective, and then for the child with the brain cancer, as well as all their friends, all the siblings’ friends, things like that, the circle just keeps sort of getting bigger and bigger.
The more that the school can be there to be a school and try their best to understand and communicate as well as they can with the family, so that they can make sure that they’re doing everything they can. I think that is definitely key,
Megan Gilmour 52:06
Yes, because we don’t want to leave these kids behind, we can bring them with us and navigate our own discomfort in order to do that, and everyone benefits from that.
So, we’re at our call to action, Jarrett. What’s your call to action for kids with brain cancer in seven words or less?
Jarrett Anthoney 52:42
Yes, we somewhat have a call to action with Dainere’s Rainbow, funnily enough. That call to action is exactly seven words as well!
Megan Gilmour 52:54
Ah nice! [both laughing]
Jarrett Anthoney 52:55
Yes, worked out very well! The call to action is take action, give hope and create change.
Megan Gilmour 53:03
I love that. That is really something we can roll with. It’s been amazing talking to you today, and I think I can say that, well, I can definitely say that Dainere would be incredibly proud of you and the work that you’re doing. I know that for sure. I’m sure you know that.
And for all the families that you’re out there helping that Dainere’s legacy has enabled that, is just beautiful and amazing.
So, we do a shout out to Dainere, and we do a shout out to Dainere’s Rainbow [https://www.daineresrainbow.com.au]. Go there, give generously, know that that support will go to families, it will also go to research to help find a cure.
Thank you for joining us today on Live & Learn Jarrett. Our hearts are with your mission, and we wish you well with it.
Jarrett Anthoney 54:16
Thank you very much for having me. It’s been an amazing conversation, and glad to help you guys out as well understanding the perspective of children with brain cancer.
Megan Gilmour 54:26
Thank you so much.
Megan Gilmour 54:33
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 [https://www.missingschool.org.au], because every dollar makes a difference.
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