November 8, 2023 • 40 mins
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/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello, and welcome back to thegrief trails podcast.
I'm your host, Amanda.
Kernaghan from, rememberGraham's a small business
dedicated to helping you supportthose in your life.
Experiencing grief.
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Paying attention to everydetail.
(00:22):
I don't typically insert triggerwarnings into my episodes as the
majority of the stories sharedhere, haven't credibly sad
components to them.
But today I would just forewarnyou that we are discussing child
boss.
Brian Mclear is joining me todayto talk about his daughter, Lucy
story.
Brian and his wife foundedLucy's legacy.
(00:42):
And if you are a dad or, youknow, a dad who is either
bereaved or parenting a childwith cancer, This will be an
episode to share.
And remember that you are notalone in your experience, let's
take a lesson.
Mandy (00:55):
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 thatyou're willing to share your
experience with me.
Brian (01:06):
Yeah, no problem.
Mandy (01:08):
I also have children, I have two children myself and I,
I read the pre-interview formand it just, I feel like you are
really living every parent'snightmare.
You know, your experience issomething that every parent.
Fears and can't really imaginefor themselves what that would
be like.
So I know that we're here totalk about Lucy and I'm going to
(01:30):
leave it to you to startwherever you feel like your
story starts.
If that starts with Lucy priorto all of this and what your
lives looked like at that time,that is fine with me or wherever
you feel comfortable
Brian (01:43):
Okay.
So My name's Brian MacLeod, andI live in Melbourne, Australia,
in the the outer eastern suburbsof Australia, of Melbourne near
an area called the Yarra Valley,which is quite hilly, and where
all the wine, wineries are andthat kind of thing, so it's
really, really scenic area,which is nice, and I work as a
(02:04):
trainer I work as a coach, I doa bit of writing, so I kind of
wear a few different hats, andmy wife and I had three children
together, Lucy, Olivia, andAmelia.
So three girls.
And you know, sort of in 20,2021, we were like, you know, in
the peak of the COVID pandemicand in lockdowns, and I'm not
(02:28):
sure if everyone listeningknows, but Melbourne, Australia
had like the strictest lockdownsin the world most of Victoria,
but especially Melbourne becauseof our recent premier who
decided to just basically shuteverything down.
So that was, that wasparticularly hard.
And right in the middle of that,we were just sort of.
You know, coasting along andkind of getting used to that, I
(02:50):
guess, as much as we could andthen our daughter Lucy was
showing some signs that were abit concerning a bit of slurred
speech and her eyes were alittle droopy and then she was
playing basketball and thebasketball hit her on the head
and she was complaining about asore head and then it was a trip
to the local public hospital,which didn't quite, you know
(03:13):
work out for various reasons andthen the day or so after that, a
trip to our local doctor andthen the doctor.
Since my wife, Nicole, yeah, gether to the Royal Children's
Hospital in Melbourne for ascan.
And yeah, she had a scan andthen I guess like our sort of
worst nightmares were realizedand they detected a brain tumour
(03:37):
and this was just a couple ofdays after her eighth birthday.
And yeah, the type of tumour itwas, was something we'd never
heard of DIPG which stands forDiffuse Intrinsic.
Pontine glauoma, which is a typeof tumor that's attached to the
brainstem.
And it's particularly common inyoung children between the ages
(04:00):
of like, sort of, eight to 12.
So if she was right, kind of inthat age group.
And firstly, we were told it's abrain tumor.
And then secondly, we were toldThere's no real cure or
treatment for this and it's, andit's inoperable.
So all they could really do wastreat it with radiotherapy and
(04:21):
hope that that would shrink itor reduce it, but it couldn't be
removed because of where it was.
They even let us know all inthis first conversation that
that may only reduce it but thechances are that it, because
it's quite an aggressive type oftumor, that it would come back.
And if it did, then, you know,there's, there'd be nothing else
(04:41):
that we could do for her.
So, so we sort of got all ofthis information in one day
sitting down in a room full ofdoctors and then had to process
that and then figure out how totell Lucy what was about to
happen to her.
So that's sort of where her, hercancer journey started just a
little over two years ago.
Mandy (05:02):
It's hard to even wrap my mind around this conversation
where you get this, I mean, suchhorrific news, did they provide
you any kind of resources withhow to talk to Lucy about it?
Brian (05:15):
Yeah.
So the Royal Children's Hospitalof Melbourne is one of the best
children's hospitals in theworld.
We're very lucky.
And how it works in Australia isthat it's all free.
And each year they do a bigfundraising thing around Easter.
They call it the Good FridayAppeal.
And each year, millions uponmillions is raised by the
Australian public for thisparticular hospital.
So, we knew that we were in goodhands, first of all, and some of
(05:40):
the resources they gave us werelike some, some kids books that
we could give to Lucy to readwhich she liked to read, and she
was a big reader, and we offeredthose to her, but she didn't
want to read initially.
So we had to just.
Take our time and try to explainit to her.
And so, yeah, we, we were giventhe support of like a social
(06:01):
worker in the hospital who waswith us from from the day of
diagnosis, right, right throughto Lucy's passing about 8 months
later, a lovely lady calledSimone.
So she was a great and a fewother professionals who did
different roles.
But yeah, initially we had somechats with with her and she
(06:22):
helped us think about how do wetell.
Lucy, and then also how do wetell our younger two daughters
as well, who were six and twoand a half at the time.
So we had to try and tell themin ways that they would
understand, but they were there,the hospital were quite
supportive and then we startedto link in with all the
different organizations.
Such as a challenge, which is anorganization here in Australia
(06:43):
for kids with cancer.
Another one called camp quality.
Very special kids brainwave.
So we were learning about all ofthese different organizations as
well.
So it was, it kind of showed usthis whole other world of, you
know, support and organizationsthat.
You never think you have to,would ever have to deal with in
your lifetime.
All of a sudden, they were alljust reaching out to us, which
(07:06):
was really good.
And they all sort of diddifferent things and had
different resources that wecould use.
So that was helpful.
Mandy (07:13):
Were you both working at the time that she was diagnosed
or was one of you staying home?
And were you able to both taketime away from work during those
eight months?
Brian (07:25):
Yeah, so we were working and the interesting thing was we
were, because we're, as I wassaying before, we're in the peak
of our lockdowns, of our COVIDlockdowns.
So a lot of people here inMelbourne actually lost their
jobs because they couldn't go towork.
And I was fortunate enough beinga teacher in my particular.
(07:46):
Course was able to betransferred online.
A lot of the courses at myinstitute, which are all hands
on courses couldn't be deliveredonline.
So a lot of those teachers areout of work.
So I was very fortunate to beable to teach online.
And once we found out the news,I sort of, I momentarily stopped
work.
And you know, had some, somestuff sort of cover for me.
(08:09):
And then during Lucy'streatment.
So when she had radiotherapy, itwas every weekday for six weeks.
So it was 36 sessions ofradiotherapy.
And we'd have to drive her intothe 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
(08:30):
parents, we all sort of workedout this roster to take her in
to the hospital.
I was fortunate enough to beable to record my classes and
upload them the day before, andthen the students would just
watch them and work through thestuff independently.
My wife at the time was workingin early childhood education, so
like in a child care centre.
So initially some of her workstopped, but then it, it was
(08:53):
able, she was able to do somework.
But once Lucy was diagnosed andstarted going through treatment,
she, she stopped working.
And then it was around Januaryof 2022 when Lucy started to
deteriorate quite quickly.
That I stopped work alltogether.
But fortunately I had a lot ofleave, annual leave from work
that I hadn't used.
(09:14):
And I was able to take off quitea bit of time and not have any
of my pay reduced and then work,work were kind enough to even
actually give me some extraleave, like carers leave and
that sort of thing.
So we were able to still have anincome, which was really
helpful.
So we got through that.
relatively unscathed, you know,we were still able to pay the
(09:36):
bills.
So that was, that was good.
Wow.
Took one, one worry off ourtable.
Mandy (09:42):
For sure.
It's definitely something thatis variable based on people's.
Current positions, you know, youjust never know what people,
what companies provide.
Brian (09:52):
Yeah, I had to stop work for about four and a half or
five months altogether before Ihad to just go back for
financial reasons.
But when I did, I sort of justgradually went back.
And I've had some momentsthroughout work in the past year
where I just wasn't able to facework and, and go into work and
had to just take some time off.
And sometimes it was planned andsometimes it would be really
(10:15):
spur of the moment.
You know, just the way the griefis, I would wake up one day and
I just feel like I couldn't facethe world or, or get to work.
And then, but my work have beenvery, very flexible and very
supportive, which has beengreat.
And I'd say I'm finna cold aswell.
Yeah.
So
Mandy (10:31):
I know you mentioned the COVID lockdowns at the time.
How did that impact?
Your experience with treatmentand going through the system.
I, I don't know, like Australiasystem while I know in the U S
like we had restrictions on howmany people could be in a room,
how many people could visit andthings 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 roomwith Lucy.
So, you know, two of us coulddrive in, but one would have to
wait outside of the, of theroom.
And the process itself wouldonly take maybe...
15 or 20 minutes and some dayswe were in and out fairly
(11:14):
quickly.
Then once you went back intohospital for the final time, it
was the sort of standard rule atthe time was only one parent
allowed in to stay at the time.
And usually when a kid wasadmitted to that hospital it'd
be like this sort of couch slashbed that the parent would sleep
on for that time.
So they were.
(11:36):
Generous to give us like adouble room for Lucy.
So there was room for both mywife and I to stay.
And then once she went in andwe, we were sort of told and
expected that would probably be,that would be it.
That would be the final time shewould go in.
We, we both went in and theyallowed both of us to stay every
day and every night for thefinal five weeks or so.
And then when, when we werehaving guests coming to visit,
(11:58):
like family and friends theyweren't always allowed, they
weren't allowed to come up tothe room.
So we would put Lucy in thewheelchair and take her down.
Into the foyer of the children'shospital which she kind of
enjoyed because it's a beautifulhospital And it doesn't feel
like a hospital down in thefoyer.
It's got like a big fish tanklike an aquarium It's beautiful
artwork It's got a littleexhibit with meerkats running
(12:19):
around and all these kind ofshops and stuff So that was
nice, but then gradually it wasgetting harder and harder for
her to To move because of how D.
I.
P.
G.
works and then the hospitalwould have eventually allowed us
to have a couple of visitors inthe room at a time.
So they made some exceptions forus, but, yeah, it was difficult
(12:41):
because, you know, afterdiagnosis essentially, they
said, you know, go and make somememories with your child, you
know, go and do some, some funstuff and Yeah, it just brings a
lot, just brings a lot up.
So yeah, they kind of say toyou, you know, go and, go and do
some fun stuff and we were verylimited with what we could do
(13:01):
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 WishFoundation got in touch with us
and organized this great trip upto Queensland and Australia for
the whole family.
Everything, all expenses paid,which is great.
And, but all the borders wereclosed in Australia.
But eventually they opened themup just in time for us to get
(13:26):
that holiday.
And so we were able to all go upto Queensland for a week and
have that holiday.
And that was, that was reallycool.
But there was a lot we didn'tget to do because of.
the lockdowns, but just also howDIPG affects the child and how
rapidly they deteriorate.
So we were quite limited in, inwhat we could do with the time
that we had with her.
So that was, that was hard.
(13:48):
You know, we didn't get to sortof do all the things she would
have liked to have done, or wewould 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 parentbecause you, you had Lucy, who's
going through this herself, butthen you also have the two other
girls.
Did you have like just a reallybig support system?
Were you able to support eachother 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, bothof us, and a large group of
friends, and a really good localcommunity that we're a part of,
like the school community thecommunity of The basketball team
and the basketball club Lucyplayed for as well as the, the
(14:37):
dancing class that she wouldattend.
And my sister, who's really goodwith organizing things.
She's also the dance teacherstarted a go fund me.
Account and within a few weeksthat raised over 60, 000, which
we were just absolutely blownaway by which allowed us to take
(15:00):
some time off to work whichallowed us to pay for a few
extra holidays and some extraexperiences when we're up in
Queensland and all of that.
So that was incredible.
And the way that, yeah, familyand friends rallied around us at
that time was great because itwas a really.
The time it was in Melbourne,with the lockdowns, it was
(15:21):
really hard on everyone becausesome of us weren't able to see
family friends, family membersand friends for months and
months at a time.
We were doing Zoom calls thatFather'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 helpedus out was amazing.
Like they'd come and they'd cookfood and come and leave it at
(15:43):
our front door.
Someone organized this littlefridge and plugged it in at our
front door so people could justcome by and leave food there and
stuff and lots of lasagna, lotsof lasagna.
I remember that someoneorganized this food.
drive thing where you couldoffer to cook a meal for someone
and then you would say what youwould cook.
(16:03):
And then once, once someonechose lasagna, that kind of told
everyone else, don't makelasagna, make something else.
Cause most people just makelasagna, right?
It's easy.
You put it in the freezer.
We still had a lot of lasagnaand I think I tried about seven
different types of lasagna.
So I'm like an expert now, butyeah, so things like that, that
made us, that made us kind oflaugh and, and brighten it up a
(16:23):
little bit as well.
So, yeah, we had a huge amountof support around us and all the
services have free counseling aswell.
And and accommodation with thatwe could stay in and I got
connected with the dad's supportgroup through the challenge
organization and did some socialthings with some other dads.
Most of, most of who were notbereaved dads, whose kids were
(16:45):
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, youknow, fighting the fight.
And but yeah, eventually wemight be connected with other
parents who lost their childrento DIPG.
And then, yeah, this whole kindof community opened up to us
(17:08):
and, yeah, and they're stillthere.
And yeah, so we've had a lot ofsupport, 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 thathelped you in like the aftermath
of, of what had happened to Lucyand helped you and your wife
process that?
Brian (17:28):
Yeah I think A few things.
So my wife and I both havereally good friendship circles,
so I've had the same group ofmates since high school, you
know, and I finished high schoolin the year 2000 and we were
mates even before that.
So that's been great and we'vedone things like camping and
just hanging out and it's alwaysa good laugh with them.
And my wife's got a lot of a lotof friends as well.
(17:51):
And the thing that's helped alot has been social media with
some of the support groups.
That are online and, and onWhatsApp and stuff like that.
So there's different groups anddifferent conversations you can,
you can join into and to connectwith other parents.
And in Australia we've only gotreally one organization that's
leading the way into theresearch and fundraising for
(18:15):
DOPG, which is called Run DOPG.
So we're connected with them andthat's run by a man and his wife
Matt and Phoebe.
Done.
And Matt was already working inthe space of, you know, cancer
research when his daughter wasdiagnosed with DIPG and passed
away quite young.
And he's continued to researchthat.
(18:36):
And originally they would run amarathon to raise money for
DIPG, hence the name run DIPG.
And now it's this organizationand 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 labsand, and seen that there is
progress being made in, in thearea of research and
(18:59):
experimental medicine.
But DIPG is really aggressiveand it's very fast.
So you know, there's a lot ofwork that needs to be done, but
there is some promise, earlysigns of promise showing, but
unfortunately It's such a littleknown cancer and on the list of
all the cancers that are outthere that get a lot of
attention, and rightly so,because every cancer is bad you
(19:22):
know, brain cancer seems to beat the bottom of the list of
cancers, and then at the bottomof the brain cancer list is DIPG
because most people don't know.
I don't even, I haven't evenheard 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'restarting to learn about how it
works and how the research ishappening.
So it's, you know, it gives usthe hope that maybe in our
(19:44):
lifetime we might see a cure, orat least an advanced treatment
that gives kids more time.
And I hope it does happenbecause, you know, no other
parent or child should have togo through it.
I mean, it would be bittersweetif they did find a cure.
It's like, gosh, where was thiscure when Lucy had it?
You know, she'd still be withus, but we don't want any other
(20:04):
kids to get it as well becauseit's, it's, it's a horrible,
it's a horrible disease, youknow?
So yeah, so we've...
That's, I guess, helping alittle bit with processing it
but just other day to day thingsas well, talking to people you
know, finding activities forourselves to do together,
independently as well becauseeveryone grieves differently, so
(20:26):
it's just finding, finding whatworks at any given moment and
it's, it's just constantlyworking it out, really.
Mandy (20:34):
And I saw that you have created Lucy's Legacy.
Can you talk about what that isand how you and your wife
decided to do that?
Brian (20:44):
Yeah, yeah, sure.
So after her diagnosis, we weregetting a lot of people reaching
out to us online on social mediaand asking how she was.
So we started a group just togive everybody updates.
Because between us, we know alot 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 shepassed away, we were thinking
(21:05):
about, you know, what's yeah.
What's going to be her legacyand then Lucy's legacy just sort
of popped into our heads or itcame came from somewhere I'm not
sure so we started a page andthen we started a fundraiser for
D.
I.
P.
G for funds to go into D.
I.
P.
G And then within a couple ofdays we had fifteen thousand
dollars twenty thousand dollarsPeople just kept kept continuing
(21:26):
to donate which was great andthen Lucy's legacy became this
like this thing for us to focuson where we talk about Lucy and
who she was as a little, as aperson and a character and what
DIPG is to raise awareness andget people talking about it
because it's so much as about itis not known.
(21:47):
Then people were each startedreaching out to us after she
passed wanting to do their ownfundraising and we were like,
yeah, go for it.
Absolutely.
So I had a friend from highschool who her and her husband
own a car mechanic service and abig car enthusiast.
So they did a, a, a drive, afundraising drive, you know,
(22:07):
drive for Lucy, it was called orsomething like that.
The name escapes me right now,but we had people we didn't even
know show up in their cars, andwe went for a drive, and we went
to a pub and had a meal, andthat raised, you know, 700 or
whatever it was.
Then we had Nicole's parents whoare involved in the local
basketball here.
Run a basketball game.
(22:29):
So the, the league that's justbelow 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'sGame and that raised money and
all the players wore herfavorite color socks, which was
aqua.
So all these basketball playerswith bright blue socks, which
was pretty cool.
(22:49):
And then my sister who runs thedancing school did a fundraiser
at her competitions called LeapDown the Line for Lucy.
So where the kids get on stageand do a special dance and they,
they pay money to do that, youknow, 10, 20, whatever it is.
And that's raised a few thousanddollars.
So that's what Lucy's Legacy hasbecome.
It's a, it's a chance for us totalk about DIPG and our journey
(23:14):
as well as other people to say,you know, I want to do something
in Lucy's name.
And we also got candles made andwe've been selling candles that
are called Light for Lucy and,and yeah, all these different
ideas have just sort of beenpopping up and we've been, we've
been doing that as much as wecan.
Just to keep her memory aliveand make sure that you know, her
(23:34):
passing brings somethingpositive, I guess to the world.
And yeah, so that's what Lucy'sLegacy is all about.
And there's a Facebook page andthere's a website and, you know,
we've got some other plans forthe future.
So we, you know, we're justworking away on those.
Mandy (23:49):
Thank you for sharing.
That sounds amazing.
And I think it's hard to, youknow, it's hard to know
sometimes what do we do afterand being able to put energy
into fundraising and raisingawareness, but hoping to help
other parents and other childrenwho.
Are going to end up in yourshoes at some point,
unfortunately, and speaking ofthat, what advice would you have
(24:12):
for other parents who aregetting a really terrible
diagnosis?
What would you encouragefamilies to do?
Brian (24:20):
I guess just take it one day at a time really because I
mean, every cancer diagnosis isdifferent and every treatment is
different and you know, somekids 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'thave to go through chemotherapy,
(24:43):
but you know, her decline was alot quicker.
So it's, you know, every journeyis different.
So I guess my advice to parentswould be like, just take the 1
day at a time.
You know, don't don't give uphope even even when, you know,
in the back of your mind thatthe odds are stacked up against.
you and your child, you know,don't give up hope because that
will, that will just push youthrough to consider different
(25:07):
options, you know, differenttreatments, different
medications.
And there's lots of different,you know, things you can do and
try out to try and give yourkids as many, as much of a
chance as possible.
And I think Be okay with thefact that it's you're going to
have some really, really harddays at every stage of the
journey during the child'ssickness, or if they do pass
(25:30):
afterwards as well, and thatthere's going to be some really,
really hard days and, you know,but eventually those days might
stretch out to, you know like itwas almost every day was hard.
Then it was like, okay, we'vehad, we've had a good week now.
And now it's actually been abetter month.
So like, gradually the time getsa little more, you know you can
(25:54):
tolerate it a bit more.
And you find, I guess, new waysto, you can find new ways to get
support.
And I think for me, it wasfinding your own way to express
how you're feeling and expressyour grief whether you do that
publicly, like you put an updateon Facebook or you do it
(26:15):
privately through journaling,or, or you channel, you channel
it into some other outlet, youknow, sports work on a little
project, do something creative.
Yeah, and it's okay to just gooff and have a good cry, you
know and that's important.
I think that's part of thegrieving process and to allow
(26:37):
that to happen.
You know, like for example, Ihave a playlist of songs on my,
on my Spotify account, which aresongs about.
Lucy and then songs we wereplaying at her funeral and I'll
put a song on sometimes and thatwill bring back a particular
memory or feeling and sometimesI'll be sad, sometimes I'll be
(26:57):
angry, sometimes I'll be happy.
So, I think it's smart to tryand go through all those range
of emotions and that track andtrying not to bottle up or
ignore any of them becausethey'll just come back.
And, and bug you anyway, soyeah, so I think that from my
(27:18):
experience so far, that's,that's been helpful.
But, you know, there's, at theend 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'renot the same people we were
before all of this happened.
You know, it does, it doeschange you.
It does change your outlook onlife.
(27:39):
But it's not all negative.
There are some, you can takesome positive things from that
as well.
I think it's given me a deeperappreciation of family health as
well.
Like how fragile and vulnerablewe all are.
And, you know, that your friendsand family and support network
(27:59):
are everything, you know, anddon't take anyone for granted.
You know, you might have, youmight have some, some
disagreements with people fromtime to time, some fights, you
might not talk to each other formonths and months, you might
clash, all of that doesn'treally matter, you know, at the
end of the day, we're all thesame, we're all, anyone can get
(28:20):
sick, anyone could, no, no one,no, time's not guaranteed to
anyone, you know, that's reallybeen a big takeaway from this
I've learned, so just, yeah,let, let it just teach you.
Whatever lesson it needs toteach you, because we can't
change what's happened,unfortunately.
As much as it's hard, you know,we just have to keep moving
(28:42):
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'treally move on from losing a
child, but you can move forward.
You move forward into this newlife without them.
But you, you're always going tomiss them.
(29:02):
It's, there's always going to bepain there.
And that's, that's totallyacceptable.
So if anyone says otherwise,just tell them to be quiet.
You know, don't, don't hit themin the face or anything like
that.
But you might feel like thatsometimes.
But yeah, just, you know, biteyour tongue and just be like, no
(29:22):
one understands until it'shappened to them, you know.
And.
I still don't understand it.
You know why it happened.
So, yeah, I think trying not toquestion the why too much
because I find that just makesme really angry about it and I
get angry about other things andlike, well, there is a reason
for it.
(29:42):
I'm not going to understand thatreason in this lifetime.
Maybe in the next lifetime.
We'll know, you know, Lucy willexplain to us why it happened.
And I'll be like, okay.
I kind of hold a bit of faiththat, 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 beable to make peace with it.
(30:03):
But right now it's just take itone 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 aboutLucy's legacy and part of that
being that you wanna keep youknow, memories of who she was as
a person out there.
So I wonder if you could tell usa little bit about Lucy.
I know you said her favoritecolor is Aqua, and is there
(30:30):
anything else you would wantpeople to know about your little
girl?
Brian (30:34):
Oh, so much.
Well, she was she was like theperfect baby.
She slept through the night forsix weeks.
Wow.
Like, people are like, what?
What did you do?
Like, nothing.
Like, she just started sleepingthrough the night from six weeks
and was a great sleeper.
She was always the first one upin the morning and got dressed
(30:54):
ready to start the day.
She was very, very creative.
She loved reading, writing,drawing.
She loved coming out with littlegames for, for her sisters and
her friends to play and runningthe game.
And if it didn't quite go theway she planned, she'd get a
bit, you know, a bit gruffy andall that.
But it was you know, prettyharmless.
(31:15):
She...
Was like to make little lists ofthings and there would be lists
all over the house of like Whowas going to come to her next
birthday party and and you know,whose toys Belonged to her and
what her sisters were allowed totouch what they weren't allowed
to touch So she was veryorganized and she was just Just
(31:37):
a really bright, happy littlegirl 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 theystill do things to honor her
memory today, which is reallynice, and you know, they always
come up and say hi to me andNicole at school and that kind
of thing, and most of them cameand visited her at hospital, so
she had great little friends,and she just loved to be around
(32:01):
family and friends and justDoing whatever made her happy
and she tried to, you know,include others in that and she
was just yeah, really, reallybright.
Really, really bubbly and justjust 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 thatthere can be forward progress
for other families, where canthey 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 inthis, in other countries and
continents, there's otherorganizations I can't think of
the name off the end of the topof my hat, but but yeah, Run D.
I.
P.
G.
in Australia is a good place tostart and that We'll tell you
the story of Matt and PhoebeDunn and their little girl and
(32:58):
it's got stories about otherDIPG kids on there and how you
can donate or, you know,organize your own fundraisers as
well.
And you know, people can checkout Lucy's legacy, the website
or the Facebook page.
And then, you know, we sharelinks and information on there
all the time.
So people can start there andsort of see how to understand
(33:22):
what DIPG is and how it how itaffects children and how, how
quick it is and how, how brutalit really is.
It's important.
It's important for people tounderstand that because it's
okay.
Our knowledge before Lucy wasdiagnosed was like, yeah, we
know cancer is common and mostcancers now are treatable or
(33:42):
preventable and some can bebeaten for other types of
cancers.
And a lot of, you know, peoplewill get it and it will go into
remission and they'll continueto live their lives.
And you know, some kids will getdifferent types of cancers and,
and beat it as well.
But, you know, brain cancer isthe one that doesn't quite get
talked about a lot because Iguess my understanding or
(34:04):
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 differenttypes of brain cancer.
So, you know, there's benigntumors where they can be removed
and operated on and kids cancontinue on their way.
But like with, with DIPG, it's,I guess it's, it's not.
(34:25):
As common as some of the othercancers, you know, they say 20
children a year in Australia arediagnosed.
It could be more than that.
Some years it might be less.
And even though that might soundlike a small number, it's still,
it's still a lot.
Because, you know, one childpassing away has this massive
ripple effect.
Not just on the parents and thefamily, but the friends, the
(34:46):
school, the local community so,you know, we really just
encourage people to understandwhat it is and do their own
research.
And if they want to help talk toother people about it, you know,
and we know it's hard to talkabout.
A lot of people don't want totalk about it for various
reasons.
You know, it can be triggeringfor them or, you know.
(35:07):
I understand for some peoplethey, they might believe if they
talk about it, that it mightbring it about into their life
some, in some way.
So there's lots of differentfeelings and thoughts about
cancer, which I totally get,because I used to be the same
way.
I used to kind of ignore it, notwant to talk about it.
Be like, no, no, no, I'll neverget cancer.
Cancer is not going to affectme.
And maybe it will one day.
(35:27):
And if it does so be it, youknow, because I've, I've seen
firsthand now.
What, what it's really likeespecially brain cancer.
So, you know, it's we just wantpeople to talk about it and
confront it and try and just getthe word out there and that will
help raise attention.
And hopefully the governmentwill then start to prioritize it
more and put some more moneyinto it because it hasn't really
(35:49):
been funded very well by ourgovernment.
It's all the research and moneythat goes into the IPG pretty
much comes from the public.
Or, you know, private sectors.
So, you know, Matt and PhoebeDunn are out there constantly
fundraising and doing, they'rethe face of that and constantly
pushing and driving it whilealso researching it and grieving
(36:12):
over their own dollar as well.
So, so, you know, we need, weneed 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 quitetaxing, you know, sometimes we
just need to take that break andfocus on ourselves and our own
families and everything for awhile.
But if there's people out theredoing it as much as some of the
(36:32):
other cancers, that's reallywhat 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 Iknow it's still so heartbreaking
and I'm sure it's hard to talkabout, and it will continue to
be hard to talk about, but alsois Such an honor to Lucy and I
particularly appreciate gettingthe father's perspective because
(37:00):
so often my guests are femaleand the people who are most
willing to talk about theirgrief and what that experience
is like are often females.
So I find that for men, it mightbe a little harder to, to open
up and talk about what that'slike.
So I think having yourperspective is so important.
Is there anything else that youwould want to leave people with?
Brian (37:22):
Well, yeah, thank you for saying that firstly.
Yeah, just I guess a couple ofthings.
Firstly, if, if there's anyother parents out there
listening who have a children,who have children with DIPG you
know, there is support outthere.
If you're like us and you'velost your child to DIPG, you
know, you're not alone, youknow, reach out to me and
Nicole.
Through Lucy's Legacy anytime,we're happy to connect and just
(37:45):
talk and share stories.
And, you know, I think, braincancer or not, what this whole
experience has taught me is thatyou know, how, how precious life
is and we can't take anyone forgranted.
We can't take anything forgranted because, you know, one
day, you're just cruising alongin life as normal and then the
(38:06):
next day.
You know, your child could bediagnosed like ours was and you
never, never ever think it'sgoing to happen to you.
And then it does happen.
And then you, you've got to tryand figure out what to do about
it.
So whether it happens to you orsomebody close to you you know
just.
Don't take life for granted,don't take anybody for granted
enjoy every moment, don't tellyourself that oh, we've got
(38:30):
time, we'll do this later, orwait 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'tput things off, don't wait, you
know, every age and stage ofyour child's life is important.
You know, and enjoy whatever ageor stage they're at because it
will go like that, you know theyears just fly by and, you know,
(38:52):
in the time that Lucy's passedaway.
It's that time is going reallyquickly as well.
But it also goes slowly as well.
So it's, it's a, it's a weirdkind of experience, but yeah, I
guess that would be, you know,my sort of thing.
And I guess for any other, dadsout there, don't be afraid to,
to talk.
And I know we think we have tobe strong sometimes and be the,
(39:13):
the breadwinner and all of that,but our mental health matters as
well.
So connect with other dads.
who have gone through it, butalso with other dads who are not
going through it, so they candistract you and you can just go
and have fun with your mates andthat kind of thing.
Don't shut yourself off.
At times I may have shut myselfoff and it doesn't really help,
you know you've got to get backout there, but, you know, look
(39:36):
after yourself as well and lookafter your mental health and
that'll help you get through thereally hard days,
I hope everyone can take a fewmoments to look at Lucy's legacy
and take some time to learn moreabout DIPG.
In her honor.
If you have the ability todonate and help fund much needed
research to benefit children andfamilies who receive this
(39:58):
devastating diagnosis.
I hope that you will.
You can find links in our shownotes.
Thank you so much for listening,please make sure you subscribe,
share this episode with anyonewho might benefit from it.
And as always.
Is it remember grams, anytimeyou need to send a little love
to someone who is grieving.
Thank you and have a wonderfulday
Hello, and welcome back to thegrief trails podcast.
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(00:22):
I don't typically insert triggerwarnings into my episodes as the
majority of the stories sharedhere, haven't credibly sad
components to them.
But today I would just forewarnyou that we are discussing child
boss.
Brian Mclear is joining me todayto talk about his daughter, Lucy
story.
Brian and his wife foundedLucy's legacy.
(00:42):
And if you are a dad or, youknow, a dad who is either
bereaved or parenting a childwith cancer, This will be an
episode to share.
And remember that you are notalone in your experience, let's
take a lesson.
Mandy (00:55):
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 thatyou're willing to share your
experience with me.
Brian (01:06):
Yeah, no problem.
Mandy (01:08):
I also have children, I have two children myself and I,
I read the pre-interview formand it just, I feel like you are
really living every parent'snightmare.
You know, your experience issomething that every parent.
Fears and can't really imaginefor themselves what that would
be like.
So I know that we're here totalk about Lucy and I'm going to
(01:30):
leave it to you to startwherever you feel like your
story starts.
If that starts with Lucy priorto all of this and what your
lives looked like at that time,that is fine with me or wherever
you feel comfortable
Brian (01:43):
Okay.
So My name's Brian MacLeod, andI live in Melbourne, Australia,
in the the outer eastern suburbsof Australia, of Melbourne near
an area called the Yarra Valley,which is quite hilly, and where
all the wine, wineries are andthat kind of thing, so it's
really, really scenic area,which is nice, and I work as a
(02:04):
trainer I work as a coach, I doa bit of writing, so I kind of
wear a few different hats, andmy wife and I had three children
together, Lucy, Olivia, andAmelia.
So three girls.
And you know, sort of in 20,2021, we were like, you know, in
the peak of the COVID pandemicand in lockdowns, and I'm not
(02:28):
sure if everyone listeningknows, but Melbourne, Australia
had like the strictest lockdownsin the world most of Victoria,
but especially Melbourne becauseof our recent premier who
decided to just basically shuteverything down.
So that was, that wasparticularly hard.
And right in the middle of that,we were just sort of.
You know, coasting along andkind of getting used to that, I
(02:50):
guess, as much as we could andthen our daughter Lucy was
showing some signs that were abit concerning a bit of slurred
speech and her eyes were alittle droopy and then she was
playing basketball and thebasketball hit her on the head
and she was complaining about asore head and then it was a trip
to the local public hospital,which didn't quite, you know
(03:13):
work out for various reasons andthen the day or so after that, a
trip to our local doctor andthen the doctor.
Since my wife, Nicole, yeah, gether to the Royal Children's
Hospital in Melbourne for ascan.
And yeah, she had a scan andthen I guess like our sort of
worst nightmares were realizedand they detected a brain tumour
(03:37):
and this was just a couple ofdays after her eighth birthday.
And yeah, the type of tumour itwas, was something we'd never
heard of DIPG which stands forDiffuse Intrinsic.
Pontine glauoma, which is a typeof tumor that's attached to the
brainstem.
And it's particularly common inyoung children between the ages
(04:00):
of like, sort of, eight to 12.
So if she was right, kind of inthat age group.
And firstly, we were told it's abrain tumor.
And then secondly, we were toldThere's no real cure or
treatment for this and it's, andit's inoperable.
So all they could really do wastreat it with radiotherapy and
(04:21):
hope that that would shrink itor reduce it, but it couldn't be
removed because of where it was.
They even let us know all inthis first conversation that
that may only reduce it but thechances are that it, because
it's quite an aggressive type oftumor, that it would come back.
And if it did, then, you know,there's, there'd be nothing else
(04:41):
that we could do for her.
So, so we sort of got all ofthis information in one day
sitting down in a room full ofdoctors and then had to process
that and then figure out how totell Lucy what was about to
happen to her.
So that's sort of where her, hercancer journey started just a
little over two years ago.
Mandy (05:02):
It's hard to even wrap my mind around this conversation
where you get this, I mean, suchhorrific news, did they provide
you any kind of resources withhow to talk to Lucy about it?
Brian (05:15):
Yeah.
So the Royal Children's Hospitalof Melbourne is one of the best
children's hospitals in theworld.
We're very lucky.
And how it works in Australia isthat it's all free.
And each year they do a bigfundraising thing around Easter.
They call it the Good FridayAppeal.
And each year, millions uponmillions is raised by the
Australian public for thisparticular hospital.
So, we knew that we were in goodhands, first of all, and some of
(05:40):
the resources they gave us werelike some, some kids books that
we could give to Lucy to readwhich she liked to read, and she
was a big reader, and we offeredthose to her, but she didn't
want to read initially.
So we had to just.
Take our time and try to explainit to her.
And so, yeah, we, we were giventhe support of like a social
(06:01):
worker in the hospital who waswith us from from the day of
diagnosis, right, right throughto Lucy's passing about 8 months
later, a lovely lady calledSimone.
So she was a great and a fewother professionals who did
different roles.
But yeah, initially we had somechats with with her and she
(06:22):
helped us think about how do wetell.
Lucy, and then also how do wetell our younger two daughters
as well, who were six and twoand a half at the time.
So we had to try and tell themin ways that they would
understand, but they were there,the hospital were quite
supportive and then we startedto link in with all the
different organizations.
Such as a challenge, which is anorganization here in Australia
(06:43):
for kids with cancer.
Another one called camp quality.
Very special kids brainwave.
So we were learning about all ofthese different organizations as
well.
So it was, it kind of showed usthis whole other world of, you
know, support and organizationsthat.
You never think you have to,would ever have to deal with in
your lifetime.
All of a sudden, they were alljust reaching out to us, which
(07:06):
was really good.
And they all sort of diddifferent things and had
different resources that wecould use.
So that was helpful.
Mandy (07:13):
Were you both working at the time that she was diagnosed
or was one of you staying home?
And were you able to both taketime away from work during those
eight months?
Brian (07:25):
Yeah, so we were working and the interesting thing was we
were, because we're, as I wassaying before, we're in the peak
of our lockdowns, of our COVIDlockdowns.
So a lot of people here inMelbourne actually lost their
jobs because they couldn't go towork.
And I was fortunate enough beinga teacher in my particular.
(07:46):
Course was able to betransferred online.
A lot of the courses at myinstitute, which are all hands
on courses couldn't be deliveredonline.
So a lot of those teachers areout of work.
So I was very fortunate to beable to teach online.
And once we found out the news,I sort of, I momentarily stopped
work.
And you know, had some, somestuff sort of cover for me.
(08:09):
And then during Lucy'streatment.
So when she had radiotherapy, itwas every weekday for six weeks.
So it was 36 sessions ofradiotherapy.
And we'd have to drive her intothe 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
(08:30):
parents, we all sort of workedout this roster to take her in
to the hospital.
I was fortunate enough to beable to record my classes and
upload them the day before, andthen the students would just
watch them and work through thestuff independently.
My wife at the time was workingin early childhood education, so
like in a child care centre.
So initially some of her workstopped, but then it, it was
(08:53):
able, she was able to do somework.
But once Lucy was diagnosed andstarted going through treatment,
she, she stopped working.
And then it was around Januaryof 2022 when Lucy started to
deteriorate quite quickly.
That I stopped work alltogether.
But fortunately I had a lot ofleave, annual leave from work
that I hadn't used.
(09:14):
And I was able to take off quitea bit of time and not have any
of my pay reduced and then work,work were kind enough to even
actually give me some extraleave, like carers leave and
that sort of thing.
So we were able to still have anincome, which was really
helpful.
So we got through that.
relatively unscathed, you know,we were still able to pay the
(09:36):
bills.
So that was, that was good.
Wow.
Took one, one worry off ourtable.
Mandy (09:42):
For sure.
It's definitely something thatis variable based on people's.
Current positions, you know, youjust never know what people,
what companies provide.
Brian (09:52):
Yeah, I had to stop work for about four and a half or
five months altogether before Ihad to just go back for
financial reasons.
But when I did, I sort of justgradually went back.
And I've had some momentsthroughout work in the past year
where I just wasn't able to facework and, and go into work and
had to just take some time off.
And sometimes it was planned andsometimes it would be really
(10:15):
spur of the moment.
You know, just the way the griefis, I would wake up one day and
I just feel like I couldn't facethe world or, or get to work.
And then, but my work have beenvery, very flexible and very
supportive, which has beengreat.
And I'd say I'm finna cold aswell.
Yeah.
So
Mandy (10:31):
I know you mentioned the COVID lockdowns at the time.
How did that impact?
Your experience with treatmentand going through the system.
I, I don't know, like Australiasystem while I know in the U S
like we had restrictions on howmany people could be in a room,
how many people could visit andthings 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 roomwith Lucy.
So, you know, two of us coulddrive in, but one would have to
wait outside of the, of theroom.
And the process itself wouldonly take maybe...
15 or 20 minutes and some dayswe were in and out fairly
(11:14):
quickly.
Then once you went back intohospital for the final time, it
was the sort of standard rule atthe time was only one parent
allowed in to stay at the time.
And usually when a kid wasadmitted to that hospital it'd
be like this sort of couch slashbed that the parent would sleep
on for that time.
So they were.
(11:36):
Generous to give us like adouble room for Lucy.
So there was room for both mywife and I to stay.
And then once she went in andwe, we were sort of told and
expected that would probably be,that would be it.
That would be the final time shewould go in.
We, we both went in and theyallowed both of us to stay every
day and every night for thefinal five weeks or so.
And then when, when we werehaving guests coming to visit,
(11:58):
like family and friends theyweren't always allowed, they
weren't allowed to come up tothe room.
So we would put Lucy in thewheelchair and take her down.
Into the foyer of the children'shospital which she kind of
enjoyed because it's a beautifulhospital And it doesn't feel
like a hospital down in thefoyer.
It's got like a big fish tanklike an aquarium It's beautiful
artwork It's got a littleexhibit with meerkats running
(12:19):
around and all these kind ofshops and stuff So that was
nice, but then gradually it wasgetting harder and harder for
her to To move because of how D.
I.
P.
G.
works and then the hospitalwould have eventually allowed us
to have a couple of visitors inthe room at a time.
So they made some exceptions forus, but, yeah, it was difficult
(12:41):
because, you know, afterdiagnosis essentially, they
said, you know, go and make somememories with your child, you
know, go and do some, some funstuff and Yeah, it just brings a
lot, just brings a lot up.
So yeah, they kind of say toyou, you know, go and, go and do
some fun stuff and we were verylimited with what we could do
(13:01):
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 WishFoundation got in touch with us
and organized this great trip upto Queensland and Australia for
the whole family.
Everything, all expenses paid,which is great.
And, but all the borders wereclosed in Australia.
But eventually they opened themup just in time for us to get
(13:26):
that holiday.
And so we were able to all go upto Queensland for a week and
have that holiday.
And that was, that was reallycool.
But there was a lot we didn'tget to do because of.
the lockdowns, but just also howDIPG affects the child and how
rapidly they deteriorate.
So we were quite limited in, inwhat we could do with the time
that we had with her.
So that was, that was hard.
(13:48):
You know, we didn't get to sortof do all the things she would
have liked to have done, or wewould 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 parentbecause you, you had Lucy, who's
going through this herself, butthen you also have the two other
girls.
Did you have like just a reallybig support system?
Were you able to support eachother 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, bothof us, and a large group of
friends, and a really good localcommunity that we're a part of,
like the school community thecommunity of The basketball team
and the basketball club Lucyplayed for as well as the, the
(14:37):
dancing class that she wouldattend.
And my sister, who's really goodwith organizing things.
She's also the dance teacherstarted a go fund me.
Account and within a few weeksthat raised over 60, 000, which
we were just absolutely blownaway by which allowed us to take
(15:00):
some time off to work whichallowed us to pay for a few
extra holidays and some extraexperiences when we're up in
Queensland and all of that.
So that was incredible.
And the way that, yeah, familyand friends rallied around us at
that time was great because itwas a really.
The time it was in Melbourne,with the lockdowns, it was
(15:21):
really hard on everyone becausesome of us weren't able to see
family friends, family membersand friends for months and
months at a time.
We were doing Zoom calls thatFather'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 helpedus out was amazing.
Like they'd come and they'd cookfood and come and leave it at
(15:43):
our front door.
Someone organized this littlefridge and plugged it in at our
front door so people could justcome by and leave food there and
stuff and lots of lasagna, lotsof lasagna.
I remember that someoneorganized this food.
drive thing where you couldoffer to cook a meal for someone
and then you would say what youwould cook.
(16:03):
And then once, once someonechose lasagna, that kind of told
everyone else, don't makelasagna, make something else.
Cause most people just makelasagna, right?
It's easy.
You put it in the freezer.
We still had a lot of lasagnaand I think I tried about seven
different types of lasagna.
So I'm like an expert now, butyeah, so things like that, that
made us, that made us kind oflaugh and, and brighten it up a
(16:23):
little bit as well.
So, yeah, we had a huge amountof support around us and all the
services have free counseling aswell.
And and accommodation with thatwe could stay in and I got
connected with the dad's supportgroup through the challenge
organization and did some socialthings with some other dads.
Most of, most of who were notbereaved dads, whose kids were
(16:45):
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, youknow, fighting the fight.
And but yeah, eventually wemight be connected with other
parents who lost their childrento DIPG.
And then, yeah, this whole kindof community opened up to us
(17:08):
and, yeah, and they're stillthere.
And yeah, so we've had a lot ofsupport, 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 thathelped you in like the aftermath
of, of what had happened to Lucyand helped you and your wife
process that?
Brian (17:28):
Yeah I think A few things.
So my wife and I both havereally good friendship circles,
so I've had the same group ofmates since high school, you
know, and I finished high schoolin the year 2000 and we were
mates even before that.
So that's been great and we'vedone things like camping and
just hanging out and it's alwaysa good laugh with them.
And my wife's got a lot of a lotof friends as well.
(17:51):
And the thing that's helped alot has been social media with
some of the support groups.
That are online and, and onWhatsApp and stuff like that.
So there's different groups anddifferent conversations you can,
you can join into and to connectwith other parents.
And in Australia we've only gotreally one organization that's
leading the way into theresearch and fundraising for
(18:15):
DOPG, which is called Run DOPG.
So we're connected with them andthat's run by a man and his wife
Matt and Phoebe.
Done.
And Matt was already working inthe space of, you know, cancer
research when his daughter wasdiagnosed with DIPG and passed
away quite young.
And he's continued to researchthat.
(18:36):
And originally they would run amarathon to raise money for
DIPG, hence the name run DIPG.
And now it's this organizationand 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 labsand, and seen that there is
progress being made in, in thearea of research and
(18:59):
experimental medicine.
But DIPG is really aggressiveand it's very fast.
So you know, there's a lot ofwork that needs to be done, but
there is some promise, earlysigns of promise showing, but
unfortunately It's such a littleknown cancer and on the list of
all the cancers that are outthere that get a lot of
attention, and rightly so,because every cancer is bad you
(19:22):
know, brain cancer seems to beat the bottom of the list of
cancers, and then at the bottomof the brain cancer list is DIPG
because most people don't know.
I don't even, I haven't evenheard 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'restarting to learn about how it
works and how the research ishappening.
So it's, you know, it gives usthe hope that maybe in our
(19:44):
lifetime we might see a cure, orat least an advanced treatment
that gives kids more time.
And I hope it does happenbecause, you know, no other
parent or child should have togo through it.
I mean, it would be bittersweetif they did find a cure.
It's like, gosh, where was thiscure when Lucy had it?
You know, she'd still be withus, but we don't want any other
(20:04):
kids to get it as well becauseit's, it's, it's a horrible,
it's a horrible disease, youknow?
So yeah, so we've...
That's, I guess, helping alittle bit with processing it
but just other day to day thingsas well, talking to people you
know, finding activities forourselves to do together,
independently as well becauseeveryone grieves differently, so
(20:26):
it's just finding, finding whatworks at any given moment and
it's, it's just constantlyworking it out, really.
Mandy (20:34):
And I saw that you have created Lucy's Legacy.
Can you talk about what that isand how you and your wife
decided to do that?
Brian (20:44):
Yeah, yeah, sure.
So after her diagnosis, we weregetting a lot of people reaching
out to us online on social mediaand asking how she was.
So we started a group just togive everybody updates.
Because between us, we know alot 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 shepassed away, we were thinking
(21:05):
about, you know, what's yeah.
What's going to be her legacyand then Lucy's legacy just sort
of popped into our heads or itcame came from somewhere I'm not
sure so we started a page andthen we started a fundraiser for
D.
I.
P.
G for funds to go into D.
I.
P.
G And then within a couple ofdays we had fifteen thousand
dollars twenty thousand dollarsPeople just kept kept continuing
(21:26):
to donate which was great andthen Lucy's legacy became this
like this thing for us to focuson where we talk about Lucy and
who she was as a little, as aperson and a character and what
DIPG is to raise awareness andget people talking about it
because it's so much as about itis not known.
(21:47):
Then people were each startedreaching out to us after she
passed wanting to do their ownfundraising and we were like,
yeah, go for it.
Absolutely.
So I had a friend from highschool who her and her husband
own a car mechanic service and abig car enthusiast.
So they did a, a, a drive, afundraising drive, you know,
(22:07):
drive for Lucy, it was called orsomething like that.
The name escapes me right now,but we had people we didn't even
know show up in their cars, andwe went for a drive, and we went
to a pub and had a meal, andthat raised, you know, 700 or
whatever it was.
Then we had Nicole's parents whoare involved in the local
basketball here.
Run a basketball game.
(22:29):
So the, the league that's justbelow 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'sGame and that raised money and
all the players wore herfavorite color socks, which was
aqua.
So all these basketball playerswith bright blue socks, which
was pretty cool.
(22:49):
And then my sister who runs thedancing school did a fundraiser
at her competitions called LeapDown the Line for Lucy.
So where the kids get on stageand do a special dance and they,
they pay money to do that, youknow, 10, 20, whatever it is.
And that's raised a few thousanddollars.
So that's what Lucy's Legacy hasbecome.
It's a, it's a chance for us totalk about DIPG and our journey
(23:14):
as well as other people to say,you know, I want to do something
in Lucy's name.
And we also got candles made andwe've been selling candles that
are called Light for Lucy and,and yeah, all these different
ideas have just sort of beenpopping up and we've been, we've
been doing that as much as wecan.
Just to keep her memory aliveand make sure that you know, her
(23:34):
passing brings somethingpositive, I guess to the world.
And yeah, so that's what Lucy'sLegacy is all about.
And there's a Facebook page andthere's a website and, you know,
we've got some other plans forthe future.
So we, you know, we're justworking away on those.
Mandy (23:49):
Thank you for sharing.
That sounds amazing.
And I think it's hard to, youknow, it's hard to know
sometimes what do we do afterand being able to put energy
into fundraising and raisingawareness, but hoping to help
other parents and other childrenwho.
Are going to end up in yourshoes at some point,
unfortunately, and speaking ofthat, what advice would you have
(24:12):
for other parents who aregetting a really terrible
diagnosis?
What would you encouragefamilies to do?
Brian (24:20):
I guess just take it one day at a time really because I
mean, every cancer diagnosis isdifferent and every treatment is
different and you know, somekids 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'thave to go through chemotherapy,
(24:43):
but you know, her decline was alot quicker.
So it's, you know, every journeyis different.
So I guess my advice to parentswould be like, just take the 1
day at a time.
You know, don't don't give uphope even even when, you know,
in the back of your mind thatthe odds are stacked up against.
you and your child, you know,don't give up hope because that
will, that will just push youthrough to consider different
(25:07):
options, you know, differenttreatments, different
medications.
And there's lots of different,you know, things you can do and
try out to try and give yourkids as many, as much of a
chance as possible.
And I think Be okay with thefact that it's you're going to
have some really, really harddays at every stage of the
journey during the child'ssickness, or if they do pass
(25:30):
afterwards as well, and thatthere's going to be some really,
really hard days and, you know,but eventually those days might
stretch out to, you know like itwas almost every day was hard.
Then it was like, okay, we'vehad, we've had a good week now.
And now it's actually been abetter month.
So like, gradually the time getsa little more, you know you can
(25:54):
tolerate it a bit more.
And you find, I guess, new waysto, you can find new ways to get
support.
And I think for me, it wasfinding your own way to express
how you're feeling and expressyour grief whether you do that
publicly, like you put an updateon Facebook or you do it
(26:15):
privately through journaling,or, or you channel, you channel
it into some other outlet, youknow, sports work on a little
project, do something creative.
Yeah, and it's okay to just gooff and have a good cry, you
know and that's important.
I think that's part of thegrieving process and to allow
(26:37):
that to happen.
You know, like for example, Ihave a playlist of songs on my,
on my Spotify account, which aresongs about.
Lucy and then songs we wereplaying at her funeral and I'll
put a song on sometimes and thatwill bring back a particular
memory or feeling and sometimesI'll be sad, sometimes I'll be
(26:57):
angry, sometimes I'll be happy.
So, I think it's smart to tryand go through all those range
of emotions and that track andtrying not to bottle up or
ignore any of them becausethey'll just come back.
And, and bug you anyway, soyeah, so I think that from my
(27:18):
experience so far, that's,that's been helpful.
But, you know, there's, at theend 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'renot the same people we were
before all of this happened.
You know, it does, it doeschange you.
It does change your outlook onlife.
(27:39):
But it's not all negative.
There are some, you can takesome positive things from that
as well.
I think it's given me a deeperappreciation of family health as
well.
Like how fragile and vulnerablewe all are.
And, you know, that your friendsand family and support network
(27:59):
are everything, you know, anddon't take anyone for granted.
You know, you might have, youmight have some, some
disagreements with people fromtime to time, some fights, you
might not talk to each other formonths and months, you might
clash, all of that doesn'treally matter, you know, at the
end of the day, we're all thesame, we're all, anyone can get
(28:20):
sick, anyone could, no, no one,no, time's not guaranteed to
anyone, you know, that's reallybeen a big takeaway from this
I've learned, so just, yeah,let, let it just teach you.
Whatever lesson it needs toteach you, because we can't
change what's happened,unfortunately.
As much as it's hard, you know,we just have to keep moving
(28:42):
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'treally move on from losing a
child, but you can move forward.
You move forward into this newlife without them.
But you, you're always going tomiss them.
(29:02):
It's, there's always going to bepain there.
And that's, that's totallyacceptable.
So if anyone says otherwise,just tell them to be quiet.
You know, don't, don't hit themin the face or anything like
that.
But you might feel like thatsometimes.
But yeah, just, you know, biteyour tongue and just be like, no
(29:22):
one understands until it'shappened to them, you know.
And.
I still don't understand it.
You know why it happened.
So, yeah, I think trying not toquestion the why too much
because I find that just makesme really angry about it and I
get angry about other things andlike, well, there is a reason
for it.
(29:42):
I'm not going to understand thatreason in this lifetime.
Maybe in the next lifetime.
We'll know, you know, Lucy willexplain to us why it happened.
And I'll be like, okay.
I kind of hold a bit of faiththat, 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 beable to make peace with it.
(30:03):
But right now it's just take itone 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 aboutLucy's legacy and part of that
being that you wanna keep youknow, memories of who she was as
a person out there.
So I wonder if you could tell usa little bit about Lucy.
I know you said her favoritecolor is Aqua, and is there
(30:30):
anything else you would wantpeople to know about your little
girl?
Brian (30:34):
Oh, so much.
Well, she was she was like theperfect baby.
She slept through the night forsix weeks.
Wow.
Like, people are like, what?
What did you do?
Like, nothing.
Like, she just started sleepingthrough the night from six weeks
and was a great sleeper.
She was always the first one upin the morning and got dressed
(30:54):
ready to start the day.
She was very, very creative.
She loved reading, writing,drawing.
She loved coming out with littlegames for, for her sisters and
her friends to play and runningthe game.
And if it didn't quite go theway she planned, she'd get a
bit, you know, a bit gruffy andall that.
But it was you know, prettyharmless.
(31:15):
She...
Was like to make little lists ofthings and there would be lists
all over the house of like Whowas going to come to her next
birthday party and and you know,whose toys Belonged to her and
what her sisters were allowed totouch what they weren't allowed
to touch So she was veryorganized and she was just Just
(31:37):
a really bright, happy littlegirl 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 theystill do things to honor her
memory today, which is reallynice, and you know, they always
come up and say hi to me andNicole at school and that kind
of thing, and most of them cameand visited her at hospital, so
she had great little friends,and she just loved to be around
(32:01):
family and friends and justDoing whatever made her happy
and she tried to, you know,include others in that and she
was just yeah, really, reallybright.
Really, really bubbly and justjust 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 thatthere can be forward progress
for other families, where canthey 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 inthis, in other countries and
continents, there's otherorganizations I can't think of
the name off the end of the topof my hat, but but yeah, Run D.
I.
P.
G.
in Australia is a good place tostart and that We'll tell you
the story of Matt and PhoebeDunn and their little girl and
(32:58):
it's got stories about otherDIPG kids on there and how you
can donate or, you know,organize your own fundraisers as
well.
And you know, people can checkout Lucy's legacy, the website
or the Facebook page.
And then, you know, we sharelinks and information on there
all the time.
So people can start there andsort of see how to understand
(33:22):
what DIPG is and how it how itaffects children and how, how
quick it is and how, how brutalit really is.
It's important.
It's important for people tounderstand that because it's
okay.
Our knowledge before Lucy wasdiagnosed was like, yeah, we
know cancer is common and mostcancers now are treatable or
(33:42):
preventable and some can bebeaten for other types of
cancers.
And a lot of, you know, peoplewill get it and it will go into
remission and they'll continueto live their lives.
And you know, some kids will getdifferent types of cancers and,
and beat it as well.
But, you know, brain cancer isthe one that doesn't quite get
talked about a lot because Iguess my understanding or
(34:04):
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 differenttypes of brain cancer.
So, you know, there's benigntumors where they can be removed
and operated on and kids cancontinue on their way.
But like with, with DIPG, it's,I guess it's, it's not.
(34:25):
As common as some of the othercancers, you know, they say 20
children a year in Australia arediagnosed.
It could be more than that.
Some years it might be less.
And even though that might soundlike a small number, it's still,
it's still a lot.
Because, you know, one childpassing away has this massive
ripple effect.
Not just on the parents and thefamily, but the friends, the
(34:46):
school, the local community so,you know, we really just
encourage people to understandwhat it is and do their own
research.
And if they want to help talk toother people about it, you know,
and we know it's hard to talkabout.
A lot of people don't want totalk about it for various
reasons.
You know, it can be triggeringfor them or, you know.
(35:07):
I understand for some peoplethey, they might believe if they
talk about it, that it mightbring it about into their life
some, in some way.
So there's lots of differentfeelings and thoughts about
cancer, which I totally get,because I used to be the same
way.
I used to kind of ignore it, notwant to talk about it.
Be like, no, no, no, I'll neverget cancer.
Cancer is not going to affectme.
And maybe it will one day.
(35:27):
And if it does so be it, youknow, because I've, I've seen
firsthand now.
What, what it's really likeespecially brain cancer.
So, you know, it's we just wantpeople to talk about it and
confront it and try and just getthe word out there and that will
help raise attention.
And hopefully the governmentwill then start to prioritize it
more and put some more moneyinto it because it hasn't really
(35:49):
been funded very well by ourgovernment.
It's all the research and moneythat goes into the IPG pretty
much comes from the public.
Or, you know, private sectors.
So, you know, Matt and PhoebeDunn are out there constantly
fundraising and doing, they'rethe face of that and constantly
pushing and driving it whilealso researching it and grieving
(36:12):
over their own dollar as well.
So, so, you know, we need, weneed 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 quitetaxing, you know, sometimes we
just need to take that break andfocus on ourselves and our own
families and everything for awhile.
But if there's people out theredoing it as much as some of the
(36:32):
other cancers, that's reallywhat 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 Iknow it's still so heartbreaking
and I'm sure it's hard to talkabout, and it will continue to
be hard to talk about, but alsois Such an honor to Lucy and I
particularly appreciate gettingthe father's perspective because
(37:00):
so often my guests are femaleand the people who are most
willing to talk about theirgrief and what that experience
is like are often females.
So I find that for men, it mightbe a little harder to, to open
up and talk about what that'slike.
So I think having yourperspective is so important.
Is there anything else that youwould want to leave people with?
Brian (37:22):
Well, yeah, thank you for saying that firstly.
Yeah, just I guess a couple ofthings.
Firstly, if, if there's anyother parents out there
listening who have a children,who have children with DIPG you
know, there is support outthere.
If you're like us and you'velost your child to DIPG, you
know, you're not alone, youknow, reach out to me and
Nicole.
Through Lucy's Legacy anytime,we're happy to connect and just
(37:45):
talk and share stories.
And, you know, I think, braincancer or not, what this whole
experience has taught me is thatyou know, how, how precious life
is and we can't take anyone forgranted.
We can't take anything forgranted because, you know, one
day, you're just cruising alongin life as normal and then the
(38:06):
next day.
You know, your child could bediagnosed like ours was and you
never, never ever think it'sgoing to happen to you.
And then it does happen.
And then you, you've got to tryand figure out what to do about
it.
So whether it happens to you orsomebody close to you you know
just.
Don't take life for granted,don't take anybody for granted
enjoy every moment, don't tellyourself that oh, we've got
(38:30):
time, we'll do this later, orwait 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'tput things off, don't wait, you
know, every age and stage ofyour child's life is important.
You know, and enjoy whatever ageor stage they're at because it
will go like that, you know theyears just fly by and, you know,
(38:52):
in the time that Lucy's passedaway.
It's that time is going reallyquickly as well.
But it also goes slowly as well.
So it's, it's a, it's a weirdkind of experience, but yeah, I
guess that would be, you know,my sort of thing.
And I guess for any other, dadsout there, don't be afraid to,
to talk.
And I know we think we have tobe strong sometimes and be the,
(39:13):
the breadwinner and all of that,but our mental health matters as
well.
So connect with other dads.
who have gone through it, butalso with other dads who are not
going through it, so they candistract you and you can just go
and have fun with your mates andthat kind of thing.
Don't shut yourself off.
At times I may have shut myselfoff and it doesn't really help,
you know you've got to get backout there, but, you know, look
(39:36):
after yourself as well and lookafter your mental health and
that'll help you get through thereally hard days,
I hope everyone can take a fewmoments to look at Lucy's legacy
and take some time to learn moreabout DIPG.
In her honor.
If you have the ability todonate and help fund much needed
research to benefit children andfamilies who receive this
(39:58):
devastating diagnosis.
I hope that you will.
You can find links in our shownotes.
Thank you so much for listening,please make sure you subscribe,
share this episode with anyonewho might benefit from it.
And as always.
Is it remember grams, anytimeyou need to send a little love
to someone who is grieving.
Thank you and have a wonderfulday
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