Lucy and her Legacy with her Dad, Brian McAleer

Lucy's Dad Brian joins us to share her story and spread awareness about DIPG. He gives an honest look into what it means to be a grieving Dad and continues to share Lucy with the world while fundraising for treatment advances. You can find more about their story at their website http://www.lucyslegacy.net/#/ or on Facebook @Lucy's Legacy. To learn more about DIPG or donate to the lifesaving research being done, check out https://rundipg.org/

Transcript

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Hello, and welcome back to the grief trails podcast. I'm your host, Amanda. Kernaghan from, remember Graham's a small business dedicated to helping you support those in your life. Experiencing grief. I hope you'll consider sending someone a personalized card or a grief support box shipping within the us is always free. And we treat each order with special care. Paying attention to every detail. I don't typically insert trigger warnings into my episodes as the majority of the stories shared here, haven't credibly sad components to them. But today I would just forewarn you that we are discussing child boss. Brian Mclear is joining me today to talk about his daughter, Lucy story. Brian and his wife founded Lucy's legacy. And if you are a dad or, you know, a dad who is either bereaved or parenting a child with cancer, This will be an episode to share. And remember that you are not alone in your experience, let's take a lesson.

Mandy 0:55

I know this is, a hard topic to talk about and it's a hard topic to listen. But it's such an important one. And I'm so appreciative that you're willing to share your experience with me.

Brian 1:06

Yeah, no problem.

Mandy 1:08

I also have children, I have two children myself and I, I read the pre-interview form and it just, I feel like you are really living every parent's nightmare. You know, your experience is something that every parent. Fears and can't really imagine for themselves what that would be like. So I know that we're here to talk about Lucy and I'm going to leave it to you to start wherever you feel like your story starts. If that starts with Lucy prior to all of this and what your lives looked like at that time, that is fine with me or wherever you feel comfortable

Brian 1:43

Okay. So My name's Brian MacLeod, and I live in Melbourne, Australia, in the the outer eastern suburbs of Australia, of Melbourne near an area called the Yarra Valley, which is quite hilly, and where all the wine, wineries are and that kind of thing, so it's really, really scenic area, which is nice, and I work as a trainer I work as a coach, I do a bit of writing, so I kind of wear a few different hats, and my wife and I had three children together, Lucy, Olivia, and Amelia. So three girls. And you know, sort of in 20, 2021, we were like, you know, in the peak of the COVID pandemic and in lockdowns, and I'm not sure if everyone listening knows, but Melbourne, Australia had like the strictest lockdowns in the world most of Victoria, but especially Melbourne because of our recent premier who decided to just basically shut everything down. So that was, that was particularly hard. And right in the middle of that, we were just sort of. You know, coasting along and kind of getting used to that, I guess, as much as we could and then our daughter Lucy was showing some signs that were a bit concerning a bit of slurred speech and her eyes were a little droopy and then she was playing basketball and the basketball hit her on the head and she was complaining about a sore head and then it was a trip to the local public hospital, which didn't quite, you know work out for various reasons and then the day or so after that, a trip to our local doctor and then the doctor. Since my wife, Nicole, yeah, get her to the Royal Children's Hospital in Melbourne for a scan. And yeah, she had a scan and then I guess like our sort of worst nightmares were realized and they detected a brain tumour and this was just a couple of days after her eighth birthday. And yeah, the type of tumour it was, was something we'd never heard of DIPG which stands for Diffuse Intrinsic. Pontine glauoma, which is a type of tumor that's attached to the brainstem. And it's particularly common in young children between the ages of like, sort of, eight to 12. So if she was right, kind of in that age group. And firstly, we were told it's a brain tumor. And then secondly, we were told There's no real cure or treatment for this and it's, and it's inoperable. So all they could really do was treat it with radiotherapy and hope that that would shrink it or reduce it, but it couldn't be removed because of where it was. They even let us know all in this first conversation that that may only reduce it but the chances are that it, because it's quite an aggressive type of tumor, that it would come back. And if it did, then, you know, there's, there'd be nothing else that we could do for her. So, so we sort of got all of this information in one day sitting down in a room full of doctors and then had to process that and then figure out how to tell Lucy what was about to happen to her. So that's sort of where her, her cancer journey started just a little over two years ago.

Mandy 5:02

It's hard to even wrap my mind around this conversation where you get this, I mean, such horrific news, did they provide you any kind of resources with how to talk to Lucy about it?

Brian 5:15

Yeah. So the Royal Children's Hospital of Melbourne is one of the best children's hospitals in the world. We're very lucky. And how it works in Australia is that it's all free. And each year they do a big fundraising thing around Easter. They call it the Good Friday Appeal. And each year, millions upon millions is raised by the Australian public for this particular hospital. So, we knew that we were in good hands, first of all, and some of the resources they gave us were like some, some kids books that we could give to Lucy to read which she liked to read, and she was a big reader, and we offered those to her, but she didn't want to read initially. So we had to just. Take our time and try to explain it to her. And so, yeah, we, we were given the support of like a social worker in the hospital who was with us from from the day of diagnosis, right, right through to Lucy's passing about 8 months later, a lovely lady called Simone. So she was a great and a few other professionals who did different roles. But yeah, initially we had some chats with with her and she helped us think about how do we tell. Lucy, and then also how do we tell our younger two daughters as well, who were six and two and a half at the time. So we had to try and tell them in ways that they would understand, but they were there, the hospital were quite supportive and then we started to link in with all the different organizations. Such as a challenge, which is an organization here in Australia for kids with cancer. Another one called camp quality. Very special kids brainwave. So we were learning about all of these different organizations as well. So it was, it kind of showed us this whole other world of, you know, support and organizations that. You never think you have to, would ever have to deal with in your lifetime. All of a sudden, they were all just reaching out to us, which was really good. And they all sort of did different things and had different resources that we could use. So that was helpful.

Mandy 7:13

Were you both working at the time that she was diagnosed or was one of you staying home? And were you able to both take time away from work during those eight months?

Brian 7:25

Yeah, so we were working and the interesting thing was we were, because we're, as I was saying before, we're in the peak of our lockdowns, of our COVID lockdowns. So a lot of people here in Melbourne actually lost their jobs because they couldn't go to work. And I was fortunate enough being a teacher in my particular. Course was able to be transferred online. A lot of the courses at my institute, which are all hands on courses couldn't be delivered online. So a lot of those teachers are out of work. So I was very fortunate to be able to teach online. And once we found out the news, I sort of, I momentarily stopped work. And you know, had some, some stuff sort of cover for me. And then during Lucy's treatment. So when she had radiotherapy, it was every weekday for six weeks. So it was 36 sessions of radiotherapy. And we'd have to drive her into the Peter McCallum. Cancer Institute in the city, which was a 45 50 minute drive and my wife and I would do it, take turns, her parents, my parents, we all sort of worked out this roster to take her in to the hospital. I was fortunate enough to be able to record my classes and upload them the day before, and then the students would just watch them and work through the stuff independently. My wife at the time was working in early childhood education, so like in a child care centre. So initially some of her work stopped, but then it, it was able, she was able to do some work. But once Lucy was diagnosed and started going through treatment, she, she stopped working. And then it was around January of 2022 when Lucy started to deteriorate quite quickly. That I stopped work all together. But fortunately I had a lot of leave, annual leave from work that I hadn't used. And I was able to take off quite a bit of time and not have any of my pay reduced and then work, work were kind enough to even actually give me some extra leave, like carers leave and that sort of thing. So we were able to still have an income, which was really helpful. So we got through that. relatively unscathed, you know, we were still able to pay the bills. So that was, that was good. Wow. Took one, one worry off our table.

Mandy 9:42

For sure. It's definitely something that is variable based on people's. Current positions, you know, you just never know what people, what companies provide.

Brian 9:52

Yeah, I had to stop work for about four and a half or five months altogether before I had to just go back for financial reasons. But when I did, I sort of just gradually went back. And I've had some moments throughout work in the past year where I just wasn't able to face work and, and go into work and had to just take some time off. And sometimes it was planned and sometimes it would be really spur of the moment. You know, just the way the grief is, I would wake up one day and I just feel like I couldn't face the world or, or get to work. And then, but my work have been very, very flexible and very supportive, which has been great. And I'd say I'm finna cold as well. Yeah. So

Mandy 10:31

I know you mentioned the COVID lockdowns at the time. How did that impact? Your experience with treatment and going through the system. I, I don't know, like Australia system while I know in the U S like we had restrictions on how many people could be in a room, how many people could visit and things like that. Was that a problem?

Brian 10:51

Yeah, it was the same sort of thing here in Melbourne. So initially, it was only one, one adult at a time was allowed to go into the treatment room with Lucy. So, you know, two of us could drive in, but one would have to wait outside of the, of the room. And the process itself would only take maybe... 15 or 20 minutes and some days we were in and out fairly quickly. Then once you went back into hospital for the final time, it was the sort of standard rule at the time was only one parent allowed in to stay at the time. And usually when a kid was admitted to that hospital it'd be like this sort of couch slash bed that the parent would sleep on for that time. So they were. Generous to give us like a double room for Lucy. So there was room for both my wife and I to stay. And then once she went in and we, we were sort of told and expected that would probably be, that would be it. That would be the final time she would go in. We, we both went in and they allowed both of us to stay every day and every night for the final five weeks or so. And then when, when we were having guests coming to visit, like family and friends they weren't always allowed, they weren't allowed to come up to the room. So we would put Lucy in the wheelchair and take her down. Into the foyer of the children's hospital which she kind of enjoyed because it's a beautiful hospital And it doesn't feel like a hospital down in the foyer. It's got like a big fish tank like an aquarium It's beautiful artwork It's got a little exhibit with meerkats running around and all these kind of shops and stuff So that was nice, but then gradually it was getting harder and harder for her to To move because of how D. I. P. G. works and then the hospital would have eventually allowed us to have a couple of visitors in the room at a time. So they made some exceptions for us, but, yeah, it was difficult because, you know, after diagnosis essentially, they said, you know, go and make some memories with your child, you know, go and do some, some fun stuff and Yeah, it just brings a lot, just brings a lot up. So yeah, they kind of say to you, you know, go and, go and do some fun stuff and we were very limited with what we could do because of the lockdowns.

Mandy 13:02

Oh yeah, I didn't even think of

Brian 13:04

that. Yeah so that was difficult. But then the Make A Wish Foundation got in touch with us and organized this great trip up to Queensland and Australia for the whole family. Everything, all expenses paid, which is great. And, but all the borders were closed in Australia. But eventually they opened them up just in time for us to get that holiday. And so we were able to all go up to Queensland for a week and have that holiday. And that was, that was really cool. But there was a lot we didn't get to do because of. the lockdowns, but just also how DIPG affects the child and how rapidly they deteriorate. So we were quite limited in, in what we could do with the time that we had with her. So that was, that was hard. You know, we didn't get to sort of do all the things she would have liked to have done, or we would like to have done with it. Yeah. Yeah.

Mandy 13:56

So I, how, Were you and your wife able to process this while continuing to parent because you, you had Lucy, who's going through this herself, but then you also have the two other girls. Did you have like just a really big support system? Were you able to support each other or did you deal with it in different ways?

Brian 14:17

Yeah, we were, we were, we're very, very fortunate to have supportive families, both of us, and a large group of friends, and a really good local community that we're a part of, like the school community the community of The basketball team and the basketball club Lucy played for as well as the, the dancing class that she would attend. And my sister, who's really good with organizing things. She's also the dance teacher started a go fund me. Account and within a few weeks that raised over 60, 000, which we were just absolutely blown away by which allowed us to take some time off to work which allowed us to pay for a few extra holidays and some extra experiences when we're up in Queensland and all of that. So that was incredible. And the way that, yeah, family and friends rallied around us at that time was great because it was a really. The time it was in Melbourne, with the lockdowns, it was really hard on everyone because some of us weren't able to see family friends, family members and friends for months and months at a time. We were doing Zoom calls that Father's Day, Mother's Day over those two years was on Zoom, birthday parties, all this stuff we were missing out on. But the way that people helped us out was amazing. Like they'd come and they'd cook food and come and leave it at our front door. Someone organized this little fridge and plugged it in at our front door so people could just come by and leave food there and stuff and lots of lasagna, lots of lasagna. I remember that someone organized this food. drive thing where you could offer to cook a meal for someone and then you would say what you would cook. And then once, once someone chose lasagna, that kind of told everyone else, don't make lasagna, make something else. Cause most people just make lasagna, right? It's easy. You put it in the freezer. We still had a lot of lasagna and I think I tried about seven different types of lasagna. So I'm like an expert now, but yeah, so things like that, that made us, that made us kind of laugh and, and brighten it up a little bit as well. So, yeah, we had a huge amount of support around us and all the services have free counseling as well. And and accommodation with that we could stay in and I got connected with the dad's support group through the challenge organization and did some social things with some other dads. Most of, most of who were not bereaved dads, whose kids were still going through treatment. So different types of cancer, but one or two other dads who had lost children like myself. And but yeah For the most part, most of the other parents were were, their kids were still, you know, fighting the fight. And but yeah, eventually we might be connected with other parents who lost their children to DIPG. And then, yeah, this whole kind of community opened up to us and, yeah, and they're still there. And yeah, so we've had a lot of support, which has been really great. It definitely helps.

Mandy 17:15

So I know you have the support of the support groups and you had some counseling. Were there other things that helped you in like the aftermath of, of what had happened to Lucy and helped you and your wife process that?

Brian 17:28

Yeah I think A few things. So my wife and I both have really good friendship circles, so I've had the same group of mates since high school, you know, and I finished high school in the year 2000 and we were mates even before that. So that's been great and we've done things like camping and just hanging out and it's always a good laugh with them. And my wife's got a lot of a lot of friends as well. And the thing that's helped a lot has been social media with some of the support groups. That are online and, and on WhatsApp and stuff like that. So there's different groups and different conversations you can, you can join into and to connect with other parents. And in Australia we've only got really one organization that's leading the way into the research and fundraising for DOPG, which is called Run DOPG. So we're connected with them and that's run by a man and his wife Matt and Phoebe. Done. And Matt was already working in the space of, you know, cancer research when his daughter was diagnosed with DIPG and passed away quite young. And he's continued to research that. And originally they would run a marathon to raise money for DIPG, hence the name run DIPG. And now it's this organization and he so we've connected with them and we've been up to their, their labs in Newcastle, which is just outside of Sydney, Australia. and gone and toured the labs and, and seen that there is progress being made in, in the area of research and experimental medicine. But DIPG is really aggressive and it's very fast. So you know, there's a lot of work that needs to be done, but there is some promise, early signs of promise showing, but unfortunately It's such a little known cancer and on the list of all the cancers that are out there that get a lot of attention, and rightly so, because every cancer is bad you know, brain cancer seems to be at the bottom of the list of cancers, and then at the bottom of the brain cancer list is DIPG because most people don't know. I don't even, I haven't even heard of it. I don't know anything about it, and we didn't until we were told on that day what Lucy had. And then, but you know, we're starting to learn about how it works and how the research is happening. So it's, you know, it gives us the hope that maybe in our lifetime we might see a cure, or at least an advanced treatment that gives kids more time. And I hope it does happen because, you know, no other parent or child should have to go through it. I mean, it would be bittersweet if they did find a cure. It's like, gosh, where was this cure when Lucy had it? You know, she'd still be with us, but we don't want any other kids to get it as well because it's, it's, it's a horrible, it's a horrible disease, you know? So yeah, so we've... That's, I guess, helping a little bit with processing it but just other day to day things as well, talking to people you know, finding activities for ourselves to do together, independently as well because everyone grieves differently, so it's just finding, finding what works at any given moment and it's, it's just constantly working it out, really.

Mandy 20:34

And I saw that you have created Lucy's Legacy. Can you talk about what that is and how you and your wife decided to do that?

Brian 20:44

Yeah, yeah, sure. So after her diagnosis, we were getting a lot of people reaching out to us online on social media and asking how she was. So we started a group just to give everybody updates. Because between us, we know a lot of people who've got a lot of friends all around the world. And we call that Lucy's journey. And then a day or two after she passed away, we were thinking about, you know, what's yeah. What's going to be her legacy and then Lucy's legacy just sort of popped into our heads or it came came from somewhere I'm not sure so we started a page and then we started a fundraiser for D. I. P. G for funds to go into D. I. P. G And then within a couple of days we had fifteen thousand dollars twenty thousand dollars People just kept kept continuing to donate which was great and then Lucy's legacy became this like this thing for us to focus on where we talk about Lucy and who she was as a little, as a person and a character and what DIPG is to raise awareness and get people talking about it because it's so much as about it is not known. Then people were each started reaching out to us after she passed wanting to do their own fundraising and we were like, yeah, go for it. Absolutely. So I had a friend from high school who her and her husband own a car mechanic service and a big car enthusiast. So they did a, a, a drive, a fundraising drive, you know, drive for Lucy, it was called or something like that. The name escapes me right now, but we had people we didn't even know show up in their cars, and we went for a drive, and we went to a pub and had a meal, and that raised, you know, 700 or whatever it was. Then we had Nicole's parents who are involved in the local basketball here. Run a basketball game. So the, the league that's just below the NBL, the NBL is like our equivalent of the NBA. So the league just below that, which is, you know, really good level basketball. They played a game called Lucy's Game and that raised money and all the players wore her favorite color socks, which was aqua. So all these basketball players with bright blue socks, which was pretty cool. And then my sister who runs the dancing school did a fundraiser at her competitions called Leap Down the Line for Lucy. So where the kids get on stage and do a special dance and they, they pay money to do that, you know, 10, 20, whatever it is. And that's raised a few thousand dollars. So that's what Lucy's Legacy has become. It's a, it's a chance for us to talk about DIPG and our journey as well as other people to say, you know, I want to do something in Lucy's name. And we also got candles made and we've been selling candles that are called Light for Lucy and, and yeah, all these different ideas have just sort of been popping up and we've been, we've been doing that as much as we can. Just to keep her memory alive and make sure that you know, her passing brings something positive, I guess to the world. And yeah, so that's what Lucy's Legacy is all about. And there's a Facebook page and there's a website and, you know, we've got some other plans for the future. So we, you know, we're just working away on those.

Mandy 23:49

Thank you for sharing. That sounds amazing. And I think it's hard to, you know, it's hard to know sometimes what do we do after and being able to put energy into fundraising and raising awareness, but hoping to help other parents and other children who. Are going to end up in your shoes at some point, unfortunately, and speaking of that, what advice would you have for other parents who are getting a really terrible diagnosis? What would you encourage families to do?

Brian 24:20

I guess just take it one day at a time really because I mean, every cancer diagnosis is different and every treatment is different and you know, some kids will go through years of chemotherapy and. All sorts of things and that's, that's a whole different type of struggle, you know Lucy didn't have to go through chemotherapy, but you know, her decline was a lot quicker. So it's, you know, every journey is different. So I guess my advice to parents would be like, just take the 1 day at a time. You know, don't don't give up hope even even when, you know, in the back of your mind that the odds are stacked up against. you and your child, you know, don't give up hope because that will, that will just push you through to consider different options, you know, different treatments, different medications. And there's lots of different, you know, things you can do and try out to try and give your kids as many, as much of a chance as possible. And I think Be okay with the fact that it's you're going to have some really, really hard days at every stage of the journey during the child's sickness, or if they do pass afterwards as well, and that there's going to be some really, really hard days and, you know, but eventually those days might stretch out to, you know like it was almost every day was hard. Then it was like, okay, we've had, we've had a good week now. And now it's actually been a better month. So like, gradually the time gets a little more, you know you can tolerate it a bit more. And you find, I guess, new ways to, you can find new ways to get support. And I think for me, it was finding your own way to express how you're feeling and express your grief whether you do that publicly, like you put an update on Facebook or you do it privately through journaling, or, or you channel, you channel it into some other outlet, you know, sports work on a little project, do something creative. Yeah, and it's okay to just go off and have a good cry, you know and that's important. I think that's part of the grieving process and to allow that to happen. You know, like for example, I have a playlist of songs on my, on my Spotify account, which are songs about. Lucy and then songs we were playing at her funeral and I'll put a song on sometimes and that will bring back a particular memory or feeling and sometimes I'll be sad, sometimes I'll be angry, sometimes I'll be happy. So, I think it's smart to try and go through all those range of emotions and that track and trying not to bottle up or ignore any of them because they'll just come back. And, and bug you anyway, so yeah, so I think that from my experience so far, that's, that's been helpful. But, you know, there's, at the end of the day, you know, when you, when you lose a child, it's, there's always a part of you goes with them. You know, so, you know, we're not the same people we were before all of this happened. You know, it does, it does change you. It does change your outlook on life. But it's not all negative. There are some, you can take some positive things from that as well. I think it's given me a deeper appreciation of family health as well. Like how fragile and vulnerable we all are. And, you know, that your friends and family and support network are everything, you know, and don't take anyone for granted. You know, you might have, you might have some, some disagreements with people from time to time, some fights, you might not talk to each other for months and months, you might clash, all of that doesn't really matter, you know, at the end of the day, we're all the same, we're all, anyone can get sick, anyone could, no, no one, no, time's not guaranteed to anyone, you know, that's really been a big takeaway from this I've learned, so just, yeah, let, let it just teach you. Whatever lesson it needs to teach you, because we can't change what's happened, unfortunately. As much as it's hard, you know, we just have to keep moving forward. And if anyone ever says to you, Oh, it's time to get over it. Just tell them to shut up. You don't get over it. You don't get over it. You know you don't, you don't really move on from losing a child, but you can move forward. You move forward into this new life without them. But you, you're always going to miss them. It's, there's always going to be pain there. And that's, that's totally acceptable. So if anyone says otherwise, just tell them to be quiet. You know, don't, don't hit them in the face or anything like that. But you might feel like that sometimes. But yeah, just, you know, bite your tongue and just be like, no one understands until it's happened to them, you know. And. I still don't understand it. You know why it happened. So, yeah, I think trying not to question the why too much because I find that just makes me really angry about it and I get angry about other things and like, well, there is a reason for it. I'm not going to understand that reason in this lifetime. Maybe in the next lifetime. We'll know, you know, Lucy will explain to us why it happened. And I'll be like, okay. I kind of hold a bit of faith that, you know yeah, when we, when we see her again, you know, we'll, we'll, we'll understand why it happened and we'll be able to make peace with it. But right now it's just take it one day at a time. Yeah.

Mandy 30:10

Yeah. I think all of that is. So helpful and important. And I know that you talked about Lucy's legacy and part of that being that you wanna keep you know, memories of who she was as a person out there. So I wonder if you could tell us a little bit about Lucy. I know you said her favorite color is Aqua, and is there anything else you would want people to know about your little girl?

Brian 30:34

Oh, so much. Well, she was she was like the perfect baby. She slept through the night for six weeks. Wow. Like, people are like, what? What did you do? Like, nothing. Like, she just started sleeping through the night from six weeks and was a great sleeper. She was always the first one up in the morning and got dressed ready to start the day. She was very, very creative. She loved reading, writing, drawing. She loved coming out with little games for, for her sisters and her friends to play and running the game. And if it didn't quite go the way she planned, she'd get a bit, you know, a bit gruffy and all that. But it was you know, pretty harmless. She... Was like to make little lists of things and there would be lists all over the house of like Who was going to come to her next birthday party and and you know, whose toys Belonged to her and what her sisters were allowed to touch what they weren't allowed to touch So she was very organized and she was just Just a really bright, happy little girl she was a good friend to all of her friends, you know, she was really well liked by all the kids in her class, and they still do things to honor her memory today, which is really nice, and you know, they always come up and say hi to me and Nicole at school and that kind of thing, and most of them came and visited her at hospital, so she had great little friends, and she just loved to be around family and friends and just Doing whatever made her happy and she tried to, you know, include others in that and she was just yeah, really, really bright. Really, really bubbly and just just a lovely little girl, you know? Yeah, and I miss her a lot.

Mandy 32:22

Thank you for sharing that if people, want to learn more and want to donate so that there can be forward progress for other families, where can they go and where can people donate. Yeah,

Brian 32:37

So in Australia Run D. I. P. G. is the place to go to I know in this, in other countries and continents, there's other organizations I can't think of the name off the end of the top of my hat, but but yeah, Run D. I. P. G. in Australia is a good place to start and that We'll tell you the story of Matt and Phoebe Dunn and their little girl and it's got stories about other DIPG kids on there and how you can donate or, you know, organize your own fundraisers as well. And you know, people can check out Lucy's legacy, the website or the Facebook page. And then, you know, we share links and information on there all the time. So people can start there and sort of see how to understand what DIPG is and how it how it affects children and how, how quick it is and how, how brutal it really is. It's important. It's important for people to understand that because it's okay. Our knowledge before Lucy was diagnosed was like, yeah, we know cancer is common and most cancers now are treatable or preventable and some can be beaten for other types of cancers. And a lot of, you know, people will get it and it will go into remission and they'll continue to live their lives. And you know, some kids will get different types of cancers and, and beat it as well. But, you know, brain cancer is the one that doesn't quite get talked about a lot because I guess my understanding or perception of it beforehand was, well, if you've got brain cancer, then we'll, you know. there's not much hurt really. But you know, there's different types of brain cancer. So, you know, there's benign tumors where they can be removed and operated on and kids can continue on their way. But like with, with DIPG, it's, I guess it's, it's not. As common as some of the other cancers, you know, they say 20 children a year in Australia are diagnosed. It could be more than that. Some years it might be less. And even though that might sound like a small number, it's still, it's still a lot. Because, you know, one child passing away has this massive ripple effect. Not just on the parents and the family, but the friends, the school, the local community so, you know, we really just encourage people to understand what it is and do their own research. And if they want to help talk to other people about it, you know, and we know it's hard to talk about. A lot of people don't want to talk about it for various reasons. You know, it can be triggering for them or, you know. I understand for some people they, they might believe if they talk about it, that it might bring it about into their life some, in some way. So there's lots of different feelings and thoughts about cancer, which I totally get, because I used to be the same way. I used to kind of ignore it, not want to talk about it. Be like, no, no, no, I'll never get cancer. Cancer is not going to affect me. And maybe it will one day. And if it does so be it, you know, because I've, I've seen firsthand now. What, what it's really like especially brain cancer. So, you know, it's we just want people to talk about it and confront it and try and just get the word out there and that will help raise attention. And hopefully the government will then start to prioritize it more and put some more money into it because it hasn't really been funded very well by our government. It's all the research and money that goes into the IPG pretty much comes from the public. Or, you know, private sectors. So, you know, Matt and Phoebe Dunn are out there constantly fundraising and doing, they're the face of that and constantly pushing and driving it while also researching it and grieving over their own dollar as well. So, so, you know, we need, we need help because the parents who are grieving this, you know, we can't do fundraising all day, every day. You know, that's, that's quite taxing, you know, sometimes we just need to take that break and focus on ourselves and our own families and everything for a while. But if there's people out there doing it as much as some of the other cancers, that's really what we want to see is just more awareness. More conversation about it. Wow.

Mandy 36:38

Thank you so much, Brian, for being willing to talk about your experience, even though I know it's still so heartbreaking and I'm sure it's hard to talk about, and it will continue to be hard to talk about, but also is Such an honor to Lucy and I particularly appreciate getting the father's perspective because so often my guests are female and the people who are most willing to talk about their grief and what that experience is like are often females. So I find that for men, it might be a little harder to, to open up and talk about what that's like. So I think having your perspective is so important. Is there anything else that you would want to leave people with?

Brian 37:22

Well, yeah, thank you for saying that firstly. Yeah, just I guess a couple of things. Firstly, if, if there's any other parents out there listening who have a children, who have children with DIPG you know, there is support out there. If you're like us and you've lost your child to DIPG, you know, you're not alone, you know, reach out to me and Nicole. Through Lucy's Legacy anytime, we're happy to connect and just talk and share stories. And, you know, I think, brain cancer or not, what this whole experience has taught me is that you know, how, how precious life is and we can't take anyone for granted. We can't take anything for granted because, you know, one day, you're just cruising along in life as normal and then the next day. You know, your child could be diagnosed like ours was and you never, never ever think it's going to happen to you. And then it does happen. And then you, you've got to try and figure out what to do about it. So whether it happens to you or somebody close to you you know just. Don't take life for granted, don't take anybody for granted enjoy every moment, don't tell yourself that oh, we've got time, we'll do this later, or wait till my kids have grown up, because it'll be easier then, and we can hang out, we can talk more, it's like, don't, don't put things off, don't wait, you know, every age and stage of your child's life is important. You know, and enjoy whatever age or stage they're at because it will go like that, you know the years just fly by and, you know, in the time that Lucy's passed away. It's that time is going really quickly as well. But it also goes slowly as well. So it's, it's a, it's a weird kind of experience, but yeah, I guess that would be, you know, my sort of thing. And I guess for any other, dads out there, don't be afraid to, to talk. And I know we think we have to be strong sometimes and be the, the breadwinner and all of that, but our mental health matters as well. So connect with other dads. who have gone through it, but also with other dads who are not going through it, so they can distract you and you can just go and have fun with your mates and that kind of thing. Don't shut yourself off. At times I may have shut myself off and it doesn't really help, you know you've got to get back out there, but, you know, look after yourself as well and look after your mental health and that'll help you get through the really hard days,

39:43

I hope everyone can take a few moments to look at Lucy's legacy and take some time to learn more about DIPG. In her honor. If you have the ability to donate and help fund much needed research to benefit children and families who receive this devastating diagnosis. I hope that you will. You can find links in our show notes. Thank you so much for listening, please make sure you subscribe, share this episode with anyone who might benefit from it. And as always. Is it remember grams, anytime you need to send a little love to someone who is grieving. Thank you and have a wonderful day