RECORDED Tue 06 Aug 2024
SUMMARY KEYWORDS: school, neuroblastoma, kids, Hamish, treatments, hospital, chemotherapy, family, Sarah, managing, education, siblings, question, children, cancer, connection
SPEAKERS: Sarah Smith, Megan Gilmour
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation, dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool Co-Founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
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 have with us Sarah Smith. Welcome, Sarah.
Sarah is a mum to three kids. Hamish is 12, Elise is nine, and Ivy is 16 months. As a family, they spend time together, enjoying each other and the kids’ activities. Sarah loves to have holidays to plan for and look forward to visiting family interstate. Most recently, Sarah was working in a warehouse which fit around the kids’ schedules and her husband’s personal training business, but the family’s lives have been put on hold since February when Hamish was diagnosed with neuroblastoma, so now Sarah’s days are mostly spent caring for Hamish and managing the household, and of course, being mum to Elise and Ivy as well. Hi Sarah, so pleased to have you on, live and learn.
Sarah Smith 01:52
Thank you for having me on today.
Megan Gilmour 01:54
It’s our absolute pleasure. So, we’re here to talk about supporting school connections for students like Hamish with complex medical and health challenges. I’ll start off by asking you to tell us about your journey and how it impacts you and why it’s something every Australian needs to know and care about.
Sarah Smith 02:21
Well, our journey started a little bit last year when Hamish was having some pains here and there. We saw lots of different doctors, had lots of different tests, and it was all put down to growing pains.
It started to escalate towards the start of the year, and then we ended up at the doctors a lot. Completely out of nowhere the doctor sent us for an x ray, just to tick boxes and check things off the list. And we were absolutely astounded to find that he had a tumor in his abdomen. We were then sent, within days of that, to the oncology clinic at Westmead, really not sure what we were going to find. And then it escalated from there, they found that he had not only the mass in his abdomen, but it was also spread all throughout his bones.
So, within days of finding out that he had a tumor, we also found out that he had cancer all throughout his body, and it was a high risk, stage four, neuroblastoma. Within days of that happening, he had a central line put in his chest so that the doctors could give him access to blood tests and drugs, and he had chemotherapy start within a week.
So, in a very short space of time, our lives were turned upside down, and everything had to be put on hold. It has been a huge shock for us and for the extended family. Thankfully, Hamish is 12, so he’s not a little kid. He is old enough to kind of understand what we’re asking of him and then be a part of the conversation with his doctors. We actively involve him, in that he’s old enough to kind of be aware of what’s going on and have a say in that.
When it comes to school, he went to school, in February he started high school, so he moved from primary school to high school. He had been super excited to get going into high school and had just kind of settled in and been to year seven orientation camp and was really excited to be getting going with that, but he only got about three weeks in, and he has only spent about four days face to face since then.
Megan Gilmour 04:38
Wow. So that’s just a huge thing to happen in your world, and obviously in Hamish’s world, and your husbands and siblings and obviously the community around you all as well. So, I want to acknowledge that, and thank you again for being willing to talk about it and to just to bring awareness to what this journey is like for kids like Hamish and for families. Yes, so we’ll get into school a bit deeper in a little while. I just wanted to come back and ask you; people would assume things about neuroblastoma or cancer. Many people might not even know about neuroblastoma. What’s the million-dollar question that you were asked when you got this news?
Sarah Smith 05:34
Um, I guess people want to know what it is, how common it is, how did it happen? Why did it happen? It’s one of the rarest childhood cancers there is. Only around 40 kids a year get diagnosed with neuroblastoma, and it is most known for being a cancer that affects young children and toddlers. So most commonly, it’s affecting kids under five. So, for Hamish to be diagnosed at the age of 12 is really rare, and so that’s kind of what most people want to know, is, how did that happen? There is, there is no answer or any rhyme or reason why neuroblastoma happens.
Megan Gilmour 06:15
It just does, yes, and my understanding was that it did affect children quite young. So, this is a double whammy shock, I guess, and just to reiterate what you said there, there is no rhyme, nor reason. We don’t have the answer to that, but what we can do is, if that happens, what does it mean, and how can we give the greatest support that we can to the kids, and, of course, you, and a wraparound of the family as well.
Sarah Smith 06:53
Yes.
Megan Gilmour 06:54
So, what is the most important thing that you want people to know?
Sarah Smith 07:00
I think a lot of misconceptions. Every cancer treatment is different. I think when people think of childhood cancer, they automatically think of leukemia. And so, I do get a lot of questions about, is it a leukemia-based cancer? That is kind of what people understand of childhood cancers. And I think the treatment for that is more known than other treatments.
The treatment for high-risk neuroblastoma, it’s all of the treatments. So, he will have chemotherapy, he will have radiotherapy, he will have immunotherapy, he will have a stem cell transplant. So, he gets the whole range of treatments that are available. And so that means that treatment is for a really long time. It’s not just a matter of a couple of months. We’re already six months into treatment, and we probably have another 12 months ahead of us of frontline treatment. And then there are things on the back end as well. I think it’s the time out of our lives that this will take up that people don’t really understand.
Megan Gilmour 08:05
Yes, it’s a very big journey, and thanks for explaining that neuroblastoma requires all of those different protocols, which, for many you know different cancers might be only one aspect of that protocol, and you know, it is, it’s a big journey. Thanks for addressing some misconceptions there. That was one of my next questions. I suppose the part of that that I haven’t picked up on yet with you is, how does this impact you? These, you know, I guess perhaps common or perhaps frustrating misconceptions about Hamish’s journey or your journey as a family. How does it impact you?
Sarah Smith 08:53
Physically, it’s taken a toll on our lives in that we’ve had to stop a lot of things. I’ve had to stop working. I couldn’t manage to keep maintaining a job. I was working part time, but our time is spent so much at the hospital that I just couldn’t maintain a job, and a lot of it is last minute. So, we’ll go thinking we’ve got an appointment, and then suddenly he needs a blood transfusion, and so we are there all day. Or chemotherapy is put off a week because his blood counts are too low, whatever it might be, we have to really be ready and able to just roll with whatever is thrown at us. And that’s, I think, the biggest impact it has had on us as a family, is that we can’t really make plans. We just have to be prepared to do whatever is needed on the day.
Megan Gilmour 09:47
Yes, indeed. And there’s that quote, which is, health is the first wealth, and I realised this in my journey with my son, was that there’s nothing else without health. That makes you realise that’s just the foundation of all other things in our lives. Thanks for being prepared to share that too.
So, you mentioned that – and I didn’t know this – my next question was, how many children and youth are living with neuroblastoma? So, I don’t know, can you answer that question? Or just that statistic of 40 children in Australia I guess, is it?
Sarah Smith 10:29
Yes. I think it’s around 40 kids in Australia are diagnosed a year. And my understanding is, it is around 10% of that is over the age of five. So yes, maybe around 10 kids over the age of five. It is really rare, yes.
Megan Gilmour 10:48
And as you were saying, it can, it can involve quite long treatments as well. So that we’re only talking here about the diagnosis rate. Is there a risk of delayed diagnosis, or are most cases of neuroblastoma, picked up early and easily?
Sarah Smith 11:10
Not really that. We’re not sure how long Hamish had this for. It is a possibility that the tumor that was in his abdomen was there for a really long time. It could have been there since he was a toddler, but there were no symptoms. The only reason that we picked up on anything going on was that, besides the aches and pains that he had, that we had put it down to – our doctors and chiropractors had put down to growing pain because they weren’t that bad – was only when he started to lose weight, and he started to lose weight quite rapidly. So, by the time we got to that point, it was really far progressed. So, there wasn’t anything we could have done. There was no way of picking it up any earlier than that.
Megan Gilmour 11:51
Yes, okay, and then you’ve talked about these treatments, or indeed, the symptomology, like what kind of complications or issues do kids with neuroblastoma have?
Sarah Smith 12:08
Depends on where the cancer is. For Hamish, because it’s through his bones, it was aches and pains, and he couldn’t do the sport that he loves to do. But it depends on where it is. So now that he’s in treatment, the symptoms from the cancer have completely subsided. Now he’s managing the symptoms of the treatment. So, at the moment, we’re in the stage of chemotherapy, so it’s managing the common symptoms of the nausea and the, you know, vomiting and loss of appetite and those kinds of things. Some kids, it can be a lot more extreme. We are very, very grateful that Hamish seems to be managing chemotherapy quite well. He just needs to rest mostly.
Megan Gilmour 12:53
Yes, the toll that it’s taking for his body to deal with that. And yes, just a shout out for kids like Hamish, and for Hamish himself, just how amazing they are and how resilient they actually are in the face of such an extraordinary journey at such a young age.
Sarah Smith 13:15
I’m constantly astounded at the kids we see in the hospital and the little ones, the toddlers, how amazing they are and how well they manage it. It’s, it’s hard to believe what they’re going through, and because they’re all just tolerating it and just showing up.
Megan Gilmour 13:30
But exactly, and you’ve captured right there, what I say is that they just, they show up, and then, you know, when they can, they’re sitting up playing and, you know, scooting around on their drip stands, and whatever else they’re doing. They’re just getting on with it. It’s remarkable.
Siblings and peers. Sarah, so we’ve mentioned that Hamish has a couple of siblings. How are they impacted? And what should we be across?
Sarah Smith 14:03
Well, the youngest is a baby, so she’s not aware of what’s going on, but she’s definitely impacted in that I’ve had to leave her way more than I had to leave either of the other two as babies. I’ve had to be quite comfortable with leaving her with people and going out all day and not knowing when I’m coming home, which is not normal for me. From the age of 10 months, I think I was leaving her all day with others. She’s gotten really good with other people, which is amazing, and I think she will come out of this much more resilient than had I not had to be leaving her.
His next younger sister is nine, so she is a lot more aware of what’s going on, and she definitely misses out on time with me and my husband and feels that quite deeply. It’s really tricky, because she doesn’t know who to talk to about it, and kids her age don’t necessarily understand and there are a lot of misconceptions around with the children about what it means. So, finding support for her is important that thankfully, there’s a lot of amazing not-for-profit organisations that do support siblings, so we get support for her as well. Yes.
Megan Gilmour 15:28
We do. We always raise the question of siblings because they are such an important part of the family life. Of course, they have their own, I guess, symptomology around it as well. Are you noticing any anxiety or other things like that, with pain issues, siblings, even the baby?
Sarah Smith 15:55
I guess, yes, it goes either between she’s super understanding and empathetic and happy to do anything that we ask her to, and then on the flip side, she gets really upset or angry or doesn’t really understand her emotion. So, it’s just this roller coaster of what she’s feeling on the day and depending on what’s coming up. And because, like I said, we have to kind of roll with the punches. Some days, we don’t know what to expect. I sometimes don’t know what to tell her what is happening. So, she doesn’t know if she’s coming home to me, she doesn’t know if she’s coming home to her grandparents. She just doesn’t know what to expect. And so that does come out eventually,
Megan Gilmour 16:36
Yes, yes. And also, I wonder, you know, well I noticed it in my own journey was the, you know, the children also worry for parents as well and each other. So, they’re taking on a lot of those different, you know, empathetic responses around them as well, which is absolutely natural.
It is so worth painting the picture here of the family life as well around Hamish and just the pressures that are created there in terms of – where you need to be and managing the normal day to day routines of life that don’t become routines anymore but are just whatever’s happening on the day. And also, a shout out to the community of people who step up and look after other children and all of those things as well.
Sarah Smith 17:41
Yes.
Megan Gilmour 17:43
So, let’s talk about school. So, we have a question usually on the podcast which asks, what’s the current population of school aged children with neuroblastoma? I think that’s one we can skip on this occasion, because I don’t know that anyone actually has that answer, either
Sarah Smith 18:03
No, no, and it would be very low, because most of them are toddlers or preschoolers.
Megan Gilmour 18:11
Yes, yes. So, we’ll go on to this question: Do kids with neuroblastoma currently miss a lot of school and why?
Sarah Smith 18:21
Yes, lots, most. Almost all school is missed. During treatments, which is an obvious time when he can’t be at school. And that’s probably one thing that people are unaware of is that for most of the chemotherapy he’s getting, he’s actually an admitted patient. So, he gets rounds of chemotherapy that lasts around four to five days, and he has to be in hospital the whole time, yes, so he can’t be at school then.
And then between treatments, he needs to wait until his blood counts pick up. So, the chemotherapy completely wipes out his immune system and he has no ability to fight infections at all. So being in a school environment, in a classroom, you know, close contact with people, particularly going through this winter at the moment, so you know there’s lots of viruses around, he can’t be at school. He can’t risk picking up a bug. If he picks up a bug, his body can’t fight it. Worst case scenario, it could land him in the ICU. If nothing else, if he picks up a bug and he can fight it, it also delays treatment, so we don’t want either of those things to happen. So, he has had the odd day here or there at the start of the year, but then as treatment has progressed, he’s ended up not having gone to school at all.
Megan Gilmour 19:45
And that’s tough too. So, my next question is what are the critical times in a kid with neuroblastoma’s school life? I would rather ask him on this one. What does this mean for Hamish, and that being the critical time for him is now? What does that mean for him?
Sarah Smith 20:11
It means that he’s missing out on a lot. It’s not just his education, which is almost secondary at this point, it’s the connection that he’s missing with his friends, particularly having just moved from primary school to high school.
For him, thankfully, he had a group of friends all move to the same high school together, so he’s been able to maintain that connection, but he’s missed out on making those new connections when you start at a new school, that the rest of his friends are continuing to make. So, there will be a big gap there when he does eventually get to go back face to face.
Megan Gilmour 20:47
Yes
Sarah Smith 20:48
And I think that’s the main thing that he’s missing, is that chance to be his own age and be an adolescent and go out and explore being away from his parents, whereas now he’s, you know, home all day with his mum, which is not what any 12-year-old wants to be doing. He wants to be out catching the bus and going to the shops and doing all that kind of thing. So, yes, he’s definitely missing that.
Megan Gilmour 21:19
Yes, and I’m smiling about what you said there and the last part of it, because I said it often myself too. It’s like I became the friend, the mum, the teacher, the carer I was. And you know, that’s not what my child wanted. And they let you know, right?
Sarah Smith 21:41
Yes, we do get told. We do get told. There are often days when we’re in the hospital where he’ll say to me, okay, mum, you can go buy coffee now, which is, I need a break from you. Please leave me alone.
Megan Gilmour 21:54
Yes, it’s the abnormality, isn’t it? There are these abnormalities at every age, I guess, and at this age, it’s, as you say, it’s that coming into your teenage years, and the exploration, and all of the normal things of that age that are no longer taking place in this situation. And a whole lot of things that are just way out of the range of normal. What does Hamish have to say about school? Does he talk about it?
Sarah Smith 22:22
He does, and he misses it, desperately misses it. He has always loved school, and he’s loved learning and using his brain. So, I think it’s probably the thing that he misses the most, because it’s just that sense of normal. I mean, everyone craves routine without it. What do you do with your days? So, he definitely talks about it and wants to be back there.
Megan Gilmour 22:48
Yes. Well, let’s hope he can get there soon. What should families and schools be prepared for with a student in Hamish’s situation?
Sarah Smith 23:05
I think the main thing is open communication, which was really hard, again, starting at a new school at year seven, three weeks in, and our first child in high school – and it is a very different system between primary school and high school – we weren’t really aware of what the system was at high school and how to contact people.
So, having that kind of communication between the school, and whether it’s directly with the family or – I know at our hospital, we have a team that liaises with the school – so just keeping that communication open with them, and not being afraid to reach out to the family, leave a voicemail if we don’t answer the phone, send a text message or an email and let us get back when the time’s right. But don’t be afraid to reach out and say, ‘What do you need? This is where we’re at. What can we do to be helping you?’
Megan Gilmour 24:02
Yes. So, am I hearing that you would love to hear from the school more, because it’s hard for you to keep the balance of everything? So, you’d love someone to be coming to you about school matters, rather than you chasing them or needing to follow up things?
Sarah Smith 24:21
Yes, yes. We found with Hamish that he wasn’t getting enough work from school. We’ve actually just gone down the path of pulling him out of his local high school and enrolling him in distance education. So, he’s just started that this week, so now we’re doing all of his schoolwork from home, which I think has been not necessarily the right choice for him. He wasn’t overly happy with it, but it was the right choice for us at this point.
So yes, I think it is about just making sure that the schools and the teachers – someone – just takes the role of being the person to contact the family and just making sure that that everything is kind of lining up. And yes, taking that role on. Because, as the parents, you know, my role is liaising with the hospital and lining up appointments and managing his health so somebody else take control of the education side of it. Yes, would be really great.
Megan Gilmour 25:26
Yes. Well, I’ll make a note for our team to check in with you in future and just find out how you’re going with the distance education. We’d love to hear your points of view on that and whether that’s been supportive of Hamish and you as a family, or whether there are some things missing there as well.
We’re really interested in the absolute best ways to keep these kids stay connected to their learning, but also social connections and other things as well, because they’re, as you pointed out earlier, they’re critical things at tough times in your life as well, aren’t they? That’s when you want people around you that you can relate to and have some moments of forgetting about the fact that all of this is going on, you know, as well.
So, what, in terms of school life challenges? What are the biggest challenges or vulnerabilities facing kids with neuroblastoma, in your opinion, to do with school and that could have to do with, you know, building on any of what you’ve already said, so the biggest challenges and vulnerabilities?
Sarah Smith 26:46
Missing the face-to-face side of it. So, in terms of the education, when he was going to school, he was still having access to all of the classroom work, or the homework as such that was put on online, particularly since, you know, COVID lockdown, schools have gotten really good at being able to load information online and use Google Classroom and those kinds of things. So, he had access to that. But without having that kind of face-to-face contact with his teachers, there’s a big gap, and so he couldn’t manage.
Megan Gilmour 27:23
Hard for him to teach himself.
Sarah Smith 27:25
Yes. Surprisingly, yes, so he wasn’t managing the work at all, because he was just missing that face-to-face contact, and just feeling like he belongs. So, when you’re stuck at home, say, with work to do on your own, there’s no sense of connection and like someone’s looking out for you. So missing that, then he’s got kind of no motivation to do the work either.
Megan Gilmour 27:59
Yes, being part of a learning community as we learn together, not just learning alone.
Sarah Smith 28:11
Yes, so missing that connection with teachers was hard, yes. But mostly, the biggest challenge is missing out on being with his friends in a classroom environment. I think we underestimate just how much kids need that, even if they’re not big learners, even if school isn’t their thing. Being in a classroom with their mates is a big thing and missing that is huge.
Megan Gilmour 28:38
Yes, it absolutely is, and that’s why we’re here too, because that’s what we firmly, firmly believe in, is that social connection and the connection to the school community is so important. Yes. So, what do you think schools could do to make it better in future? So, probably too early to answer about distance education, but feel free to talk about that. But I guess Hamish’s regular school.
Sarah Smith 29:16
Yes, be prepared to ask questions, and don’t be afraid to reach out to the families. I know it can be a feeling if you don’t want to bother and encroach on someone’s time in such a challenging circumstance. But mostly, I think you’d find that families going through a similar situation, we’re happy to answer questions. We can’t always answer questions when you ring, but that’s fine. You ring, you leave a message. We get back to you when it when it suits, but don’t, yes, don’t be afraid to ask questions and ask what the family needs and just be there to support in whatever way possible.
In terms of the distance education so far, so good. They’re set up for that. You know, they’ve been doing it a really long time. So, the communication side of it is really good for children that have the immunocompromised side of it. They do offer face to face learning hubs, and they do have study days, and occasionally they have excursions. So there still is a chance for kids to connect face to face. That’s what they need. So that’s a watch this space to see how that one plays out.
Megan Gilmour 30:28
And do you think if schools offered two-way digital connection to the classroom, like they did in COVID, except COVID wasn’t there, so learn from anywhere, would that be something that Hamish and your family would feel was beneficial in a school system to provide that to children who can’t get there physically?
Sarah Smith 30:51
Yes, if there was the ability to do zoom lessons exactly like what, what offer was offered during COVID, then, yes, absolutely, he probably still would have been able to stay connected to his school, if he could have just logged on and been watching the class from home. Obviously, with the need to be flexible in between treatments, sometimes they just can’t do the work, and so being realistic on the amount of work that can be turned in.
But if he could have been tuning into his classes and not missing out on that face-to-face lesson, then, yes, I think he probably would be more connected to that classroom environment.
Megan Gilmour 31:36
Yes, well, that’s what MissingSchool does. We do it through telepresence robots at the moment, but our goal is to have schools across Australia provide this as a matter of business as usual to kids – you know, Zoom lessons, whatever it is, whatever technology it is, to be able to presence them back into their classroom when they can’t join, that’s our big goal. So, watch this space.
Hopefully we can make it happen. It’s happening overseas. It’s been done overseas for quite a long time as well. We’ve been doing it since 2017. We live in an era where it’s completely possible now. So, we’re really hoping that we can see some change in that area.
How much time – you mentioned at the beginning, Sarah – how much school is Hamish missing, and how much is he likely to miss?
Sarah Smith 32:36
Well, he missed almost the entire first semester. So, he did a couple of weeks in term one, all of term two, he had off. We were trying to set up a telepresence robot through another organisation. We were trying to set that up, but between the school and trying to get everyone on board, and the training and onboarding required, it meant that he missed an entire term of school waiting for that to happen, right. And then in the end, we couldn’t really wait any longer. He was just missing too much. So that’s when we went to distance education. So, if we could, you know, if that kind of thing could happen and be sped up, it would help.
Megan Gilmour 33:22
Was it the school that was resistant to it? Was that what caused it to take longer?
Sarah Smith 33:28
Yes, a little bit, yes a little bit of the school being – being a little bit resistant, and just not sure of the technology and how much time it was going to take for the teachers out of their class time. Yes,
Megan Gilmour 33:44
Yes.
Sarah Smith 33:46
Well, moving forward, he will be probably missing a lot more. He’s got some long stays during his transplant stage. He needs to be in hospital in isolation for a good, probably two months or more, and so he won’t be able to even leave his room during that time. So, he’ll definitely miss a lot.
Megan Gilmour 34:10
Yes, he’ll be in protective isolation, as we call it.
Hospital School – will Hamish engage with Hospital School for longer stints in hospital? You mentioned that you’ve had some engagement, but perhaps the time spans in hospital haven’t accommodated hospital schooling. Do you want to comment on that?
Sarah Smith 34:36
Yes, the Hospital School is amazing. They have – depending on the condition your child is there for – they have a face-to-face school. So, the kids, if they’re there for a really long time, they can actually go to school and do schoolwork through the hospital school. For Hamish’s condition and the other oncology kids, they get offered bedside learning. And so, the hospital school can come in, the teachers will come in and sit with them for an hour a day while they’re admitted and run a class with them.
So, if they are still attending school, they’ll often just run through the workload from their own school, or they can bring work to them if they don’t have anything. When he does longer stints, he’ll definitely be connected with those teachers. But a lot of what happens is either over the weekends, or if we’re in and out of the day clinics. So, when you’re not coming in as an admitted patient, there is a bit of a gap. You kind of miss out a little bit.
Megan Gilmour 35:32
Yes, and I think this is really important to point out, there’s that gap between the regular school and the hospital school. So, hospital school’s for hospital admissions. And then, if those are, as you say, across the weekend, or if it’s an outpatient situation, or you’re discharged before you get your hour of hospital schooling that day, or can go to the class, then these are all really important gaps that we need to draw attention to.
And of course, if you’re not in hospital and you’re at home, then the education support isn’t coming through during that time. So that’s a lot of people – a lot of people’s conception about illness is that it takes place in hospital, and some of it does, but there’s also large stints of time at home or outside of hospital.
Sarah Smith 36:34
Well, they want you to go as soon as you’re able to, they want you out of there. They need the bed for someone else.
Megan Gilmour 36:39
That’s right. They need the bed for someone else, and healthcare, you know, is improving, and treatments are improving, and you know, it just means that there are long periods of time that these kids don’t have connection to their education, their learning. And so, in your case, you’ve chosen to start with distance education. There’ll be other bridges to cross when returning to the regular school and then not being at the regular school for gaps of time, and then you’re trying to do distance education during those times. There’ll be things to work out, I guess in the future.
Sarah Smith 37:23
Yes, the school at the hospital also has a team called ‘Back on Track’, and their role is to liaise with the school, so when it comes time to him going back to face to face, we will get someone who can kind of be his voice and help the school support him in in returning, because even once he’s finished his frontline treatment and he can go back to school, there will still be big chunks of time when he has to come out. So, as he’s going through ongoing monitoring and testing, if he’s having procedures done, we might need to pull him out and isolate him a few days before to make sure he doesn’t get sick before procedures and that kind of thing. So even when he does go back to school, it won’t be business as usual, he will still have periods of time where he’s missing out.
Megan Gilmour 38:11
Yes, and the hospital school, as a state education school, does a lot of that liaison too, I understand from our partners in hospital schools. There’s still that gap that we talked about, though, which is that time at home where you’re trying to put together ‘well, what do we do here?’ and everybody feels quite anxious about it at the same time, right? Because we all appreciate, or most of us appreciate, the importance of school in a child’s life, and wanting that to be able to continue for all the reasons we’ve talked about on this call.
So, as we get close to the end of our conversation, I wanted to ask, is there anything else that you want us to know about school, quality of life for kids with neuroblastoma, or anything about the journey that you haven’t already covered?
Sarah Smith 39:12
I think the main thing is, from Hamish’s point of view and from our point of view, it’s that he is just a kid, like he goes to school, and sometimes, when he was going to school, he’s worried about people asking questions or treating him differently, or, you know, pointing out that he’s got no hair and that kind of thing. He’s just a kid. He just wants to be involved, and he just wants life to be as normal as possible.
Megan Gilmour 39:49
Doesn’t want to stand out?
Sarah Smith 40:01
Yes. So the biggest takeaway is just to still treat him like a kid, not like a patient. And that as he goes back into the community and gets to hang out with his mates again, just remembering that that he is just still a kid.
Megan Gilmour 40:09
And how are his mates finding this? Do you get any feedback from their families or things that Hamish reports back on what his friends are saying or asking
Sarah Smith 40:20
His good mates have been like, his close circle of friends have been absolutely amazing. Even within two weeks of his first round of chemotherapy, he lost his hair, and his friends were all over here, and they had a big party and shaved their heads with him. So, they’ve all been incredibly supportive, and I guess understanding, because of the age they are, they actually do understand. It’s more my daughter’s age group and the kids that around her, they are the ones that that don’t necessarily say the right things because they’re not sure what’s going on.
Megan Gilmour 40:57
Yes, yes. And that can bring its own set of frustrations and upsets as well.
Sarah Smith 41:04
Yes
Megan Gilmour 41:06
There’s so much to contend with. So, call to action. What’s your call to action for neuroblastoma? In seven words or less.
Sarah Smith 41:23
Might need a few more than that.
Megan Gilmour 41:24
Go for it.
Sarah Smith 41:29
The biggest thing, I’m not sure. There is a not-for-profit neuroblastoma, Australia,
Megan Gilmour 41:39
just about to ask about that. So, I’m so glad you raised it now.
Sarah Smith 41:43
Their primary goal is to find safe and effective treatments that are gentler on kids. So, trying to find treatments, drugs, chemotherapies, whatever it is, for kids that are designed for kids, because what a lot of what the treatments involve right now, they’re drugs that were designed for adults, and so they’re really harsh. So, support neuroblastoma because they support research to try and find safer and gentler treatments for children.
Megan Gilmour 42:17
Yes, good call out. So, we, we want to do a shout out to Neuroblastoma Australia, who introduced Sarah to us, and head to Google, or whatever search engine you use, and Google Neuroblastoma Australia, and give generously to support kids with neuroblastoma and their families to find gentler treatments and more effective treatments so this this cancer can be brought to a cure.
Thank you for joining me today, Sarah, and thank you for being so willing to share your journey. I acknowledge how difficult it is, and there’ll be lots of people out there who might not appreciate that, but after your sharing with us, they will certainly have a better understanding of the journey than what they started with.
Sarah Smith 43:23
Thank you for having me.
Megan Gilmour 43:45
It’s our pleasure. Thank you so much.
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like share comment or leave us a review, because we love hearing from you, and if you want to donate head to www.missing school.org.au, because every dollar makes a difference.
View the episode here.
