June 20, 2024 • 17 mins
The Edsea family's world went into a tailspin when doctors told them 6 month old Eli had a rare leukemia. But they made it through, with the amazing support from the Far South Coast community.
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Speaker 1 (00:01):
High are Fast out Coast A I'm James fantasy. Most
people understand raising kids comes with a thousand challenges, especially
if you've got a few little ones, like in my household,
and in the bustle of daily life. You hope everyone
stays happy and healthy. But for a South Coast couple,
their lives changed in a heartbeat when doctors told them
(00:22):
their six month old baby boy, Eli, had a form
of leukemia caused by the rare Philadelphia chromosome cancer gene.
And for Marie, your mum, Dakota edsy, She'll never forget
the moment a diagnosis sent her world spinning. Dakota, take
us back to when you first noticed something was wrong
with your old boy Eli.
Speaker 2 (00:43):
We didn't notice anything was wrong. Actually, we just happened
to be sitting in the waiting room at the doctor
surgery for immunizations and a doctor was just walking past
and she stopped and kind of looked at Eli and
was like, oh, he is quite pale. And I was like, oh,
I don't know, yeah, maybe, and she's like, I'll book
you in with your normal doctor and we'll just have
(01:06):
a look. And so two days later we went back
and saw our normal GP who said that yep, he
was very anemic and sent for blood. But then two
hours later my doctor called me back and he was like,
you need to go to bigger now. They want to
see you down there straight away. So we got in
a car headed straight down to Bega. They did some
(01:27):
blood work and a couple hours later they took us
into a little room and yeah, I told us, we
think it's lakemia.
Speaker 1 (01:34):
Yeah. So that was the sixth of June twenty twenty two.
You took him down to Southeast Regional Hospital in Viga,
where he was diagnosed with leukemia, which was confirmed the
next day, to Sydney Hospital. What was going through your
head in that twenty four hour period.
Speaker 2 (01:50):
Oh, honestly, I don't even know it was. It's all
a muddled mess. It was just very overwhelming. They flew
us up to Sydney after telling us they think we
had the chem here, and then we kind of just
sudden a room all day waiting for the doctors to
come back because they were busy upstairs, so we didn't
see anybody until late that evening, so we kind of
just sat there not knowing what's happening, what's going on,
(02:13):
and just sitting there with the news that you've got
cancer and just yea waiting for the doctors to come.
Speaker 1 (02:19):
I don't imagine it's ever nice to hear that news
about any of your children or any of your family members.
But can you describe what it was like hearing it
about your baby boy.
Speaker 2 (02:31):
It was like something was being ripped out of you.
I instantly just started crying and just broke down. I
was like, I have my man with me, which was
a good support, but yeah, it just felt like you
were being ripped apart when they sit you down in
the room by yourself and tell you that.
Speaker 1 (02:50):
They're just so innocent, and you only want the best
for your children and other people's children. So I can
only imagine.
Speaker 2 (02:58):
Yeah, it's the worst feeling in the world, and especially
not knowing how it is going to turn out, and
just you know, you get hit with all the bad
news and you don't know what's going to happen.
Speaker 1 (03:08):
Little Eli underwent surgery the next day to have a
central line put in so they could start steroids and
chemotherapy straight away. Then doctors came back to you about
a week later to say, your boy doesn't only have leukemia,
but he has an extremely rare form of leukemia which
is not normally found in babies.
Speaker 2 (03:29):
What happened then, Yeah, so the doctor that we'd been
assigned came in and kind of told us what they'd
found in the genetic testing and said, well, now he's
no longer low risk, he is now high risk, so
he'll be moved to the high risk team. So we
had to get a whole new team that doctors come
(03:50):
in and yeah, they kind of said to us, look,
we have no information on this Philadelphia gene in a
child under twelve months old. It is going to be
trial and error. So that's just like another little stab.
It's like, oh, okay, yeah, sure, we're just going to
wing it.
Speaker 1 (04:09):
Yeah, did you feel a bit overwhelmed by that that
most doctors couldn't actually give you answers?
Speaker 2 (04:16):
Especially because our doctor she had reached out to doctors
all over the world to try and get any information
on that that she could, and she managed to find
only one other doctor that had ever seen a case
of it in someone so young, and so there just
really was nothing to go on the treatment. So it
was just we're just going to have to try the
(04:36):
things we normally do and see if it works and
kind of hope the best and we'll definitely do a
bone married transplant because that'll give him the best shot.
But other than that, it's kind of just trial and error.
And it was a very overwhelming when you get told
we don't know what we're doing.
Speaker 1 (04:51):
Really, I can imagine since then you would have been
a bit like a dog with a bone and wanting
to find out as much as you can about the
What have you since found out about Philadelphia chromosome cancer
over the journey.
Speaker 2 (05:06):
Well, I've actually come across another lady in the local
area who her niece had it in Canberra, and so
she was good to talk to. But I also did
a lot of online research and found cases in America
and followed up on their story and what they did
for treatment and everything like that. But yeah, a lot
(05:26):
of it is still just the normal chemo procedure. They
treat it very similarly, but they also have a specific
tablet that they will use to treat it as well
to make sure that it stays away that they don't
use for normal cases.
Speaker 1 (05:41):
And after Eli's first block of chemo the cancer was gone.
How did you feel, firstly when you heard that news?
Speaker 2 (05:48):
It was great that the chemo was working, because that
is a great sign that it's working and he's responding
to the treatment. So obviously that was great, But it
was still nerve wracking because I mean it could have
come at any time. So still nerve wracking, but obviously
it's a great feeling that the chemo was working and
his body was responding to it.
Speaker 1 (06:08):
Yeah, so he was in remission and he did four
blocks of chemo as well as amunotherapy. Then about six
months after Eli was first diagnosed, doctors recommended a bone
marrow transplant, as you mentioned earlier, to keep the cancer away.
I've heard that bone marrow transplants can be quite painful
and uncomfortable. But because your other son, Noah, who was
(06:31):
two at the time, was a genetic match, they recommended
that you make that happen. But how hard or easy
was that decision for you and your partner Jesse to make.
Speaker 2 (06:41):
I think it was an easy decision knowing that for well,
like the doctors said to us, the procedure for a
child having the bone marrow removed isn't overly painful for
them because their bone marrow is still really soft. It
hasn't become hard yet because it's still growing, so they said,
because it's still so soft, the procedure on them isn't
(07:03):
too bad. So I think that helped us make the
decision to do it. And obviously, because a sibling match
for a bone marrow transplant is the best match you
can get it sitter than any other kind of match,
and obviously we wanted to give Eli the best shot
at having the bone marray transpent work and not reject
so I think in that sense it was an easy decision.
(07:25):
So when the bone marra was taken from Noah, he
was under for a couple of hours, but when it
came out he was fine, and an hour later he
was up and running around again, so it didn't even
bother him.
Speaker 1 (07:36):
Yeah, and during this time you were living at Ronald
McDonald house until early March, so for around nine months
your family was split as you and Eli were in Sydney,
while Noah was with your mum Erica in Maruya, and
your partner Jesse traveled back and forth. That must have
presented some challenges.
Speaker 2 (07:55):
Oh, it definitely did, especially because for a three month period,
Eli and I were in full isolation for lockdown, so
no one in no one out, So it was definitely hard,
especially being separated my other son. But we did a
lot of FaceTime and tried to make it work. But
I think at the time it worked, But the aftermath
(08:16):
and the effects that had when we actually came home
on my oldest son who was here, was probably worse.
He had a lot of separation anxiety once we got back.
Speaker 1 (08:24):
Yeah, because I can imagine a two year old probably
couldn't understand, you know, why mum was here every day
and now Mum's gone.
Speaker 2 (08:31):
Yeah, Yeah, he didn't know what was happening and while
we were gone or when or if we were coming back.
And yeah, once we did come back, I couldn't leave
his side. He would not let me go anywhere, not
even to the supermarket without having a meltdown. So it
was worse the effects, I'd say, when we came back
compared to when we were going through it.
Speaker 1 (08:50):
We're in conversation with Maria Mum Dakota Edsy stick around
more soon on our Heartfast South Coast. I art Far
South Coast. HI are Far South Coast. Welcome back, I'm
James Fantasy and we continue our chat with young Mum
Dakota Edsy who's sharing her story of uprooting from Mariya
(09:13):
and moving to Sydney for nine months so her baby boy,
Eli could receive cancer treatment, while her two year old
son Noah stayed on the South Coast with grandmother Erica,
with Jesse traveling back and forth, and how the amazing
support from the Far South Coast community helped the young
family get through a hell of a time when this
(09:35):
was happening, You and Jesse had to stop working. You
still had a mortgage bills coming in, so your mum
Erica and your sister Cassie set up a go Fundme
page for you guys to help pay for petrol and
some of those costs. How did the Far South Coast
community respond to that?
Speaker 2 (09:52):
Oh, beyond anything I could have ever dreamed. They were amazing. Yes,
they managed to raise I think it was like forty
thousand dollars in total for the growth on me, which
is just beyond anything I ever expected. And yet we
have a really amazing community.
Speaker 1 (10:10):
We certainly do. It's now two years since Eli was
first diagnosed. How's the little fellow going.
Speaker 2 (10:17):
Oh, he's doing amazing. He's doing amazing. He's a very funny,
cheeky almost three year old now and looking at him,
you would never have known he's gone through what he did.
Speaker 1 (10:29):
That's so good to hear. And I guess just give
us a bit of an update now on how the
boys are work. You know, has life returned somewhat to
normal for you and Jesse and your family.
Speaker 2 (10:41):
Yeah, it's back to probably as normal as we're going
to get for a while. We're home, my partner's working
full time. I'm currently on maternity leave. We did have
another little baby in February of this year.
Speaker 1 (10:53):
Oh, congratulations, thank you another boy.
Speaker 2 (10:57):
No, finally a girl.
Speaker 1 (10:58):
You got one.
Speaker 2 (11:01):
Yeah, so that was definitely an exciting surprise. She was.
But yeah, the boys are in daycare and loving it.
We're all doing really well, back in a routine, which
is really nice.
Speaker 1 (11:12):
And you also had a bit of a career changed
through this journey as well. Could you just tell us
about that.
Speaker 2 (11:17):
Yeah, of course. I was working for Southern Phone to
a communications company. They were then taken over by AGL
and I still had a job there. They reached out
to me one day and were like, oh, look, we're
going to make you redundant or you can have another
position within the company. You choose what you want. And
obviously at the time I was still in Sydney, so
(11:38):
I wasn't in a position to kind of go to
another position. So I did just say, all right, I'll
become redundant then, and decided to take up studying while
Eli was getting treatment, doing my certificate three in early
titled education. So now that I'm home, I'm working in
the childcare field.
Speaker 1 (11:54):
So good that you were able to use some of
that time that you're in Sydney to study and then
change your career, like you're really enjoying that new role
as well.
Speaker 2 (12:03):
Yeah, definitely, it's definitely what I'm passionate about. But yeah,
studying while I was away was sort a good way
to distress my mind from all the hospital stuff as well.
Speaker 1 (12:11):
And three kids at home isn't enough for you. You
need more when you go to work, exactly. Moving to
a bit more of a serious question I had for you, Dakota,
the new Eurobidella Regional Hospital construction has been given the
green light with the state Significant Development Approval, in saying
that it was originally slated to open in twenty twenty five,
(12:34):
which appears likely now to be pushed back to twenty
twenty seven, and while the new hospital will reportedly open
with increased capacity and access for local chemotherapy and renal dialysis,
New South Wales Health has not yet committed to establishing
radiation therapy services in the region. As someone who's had
to travel from Maria to Bega and Sydney regularly, how
(12:58):
do you feel about that?
Speaker 2 (12:59):
I mean, we definitely need those services. There are so
many people that have to travel so far, and so
many of the people that don't have the means of
getting there and back. We need more services available in
the area, especially as we are such a fast growing
area now and we've got so many more people moving
to the area. We just need to have radiation services available.
Speaker 1 (13:21):
And you still have to take a life for regular
checkups in Sydney, and every time you do, you take
groceries and donations up to Ronald McDonald House for other
families going through similar experiences, and you recently asked the
Maria community to donate as well. How did that go?
Speaker 2 (13:39):
Yeah, So normally when I go up, I go up
every four months. At the moment, I'll normally take up
a bagger stuff myself, but we were going up this
time and I thought, oh, why not reach out and
see if anyone else wants to donate, because you know,
the more I can get up there, the better for
all the families, just because I know when we were
up there, it was always good if you had to
rusbate the hospital or a long date the hospital. You
didn't want to have to go to the shop and
(14:00):
get food, and it was always good when it was
just stuck there in the house that you could access
in the community pantry. So I decided to put a
post on the local notice forwards in the year of
gallery and see if anyone wanted to donate anything. And then, oh,
it was amazing. It definitely was more than I was
expecting for people to reach out and be like, yeah,
we want to donate, we want to do whatever we
(14:21):
can as well. It was an amazing reaction that I
had to the post. I moneyed to get up a
whole car load full of groceries.
Speaker 1 (14:30):
My car was packed, Yeah, I saw the photo. There
was like a floor full of bags.
Speaker 2 (14:35):
Yeah, no, it was huge. It was huge. And I've
even since that's been back, I've had people reach out
and be like, oh, please let us know when you
go up next, Like we want to donate some food
and stuff. So no, the response was amazing.
Speaker 1 (14:46):
At the start of the interview, you mentioned that you
guys didn't actually notice something was wrong. It was the
doctor that walked past and noticed the color of Eli
and mentioned it. I just wanted to ask you, do
you know who that doctor is? And then also, how
grateful are you that they walked past that day?
Speaker 2 (15:05):
Yeah? The doctor was doctor Marie bond here in Maruya,
And oh beyond grateful because we'd actually already been in
and seen a different doctor already that morning and they
didn't pick up on anything. So we were beyond grateful
that she just happened to be walking past and stopped
and noticed that Saint caughtn't right.
Speaker 1 (15:24):
Have you had a conversation with her about that, since I.
Speaker 2 (15:28):
Haven't directly, but my mum has.
Speaker 1 (15:30):
Yeah.
Speaker 2 (15:31):
Yeah, we just got lucky, Like if she hadn't walked
past that day, who knows when we would have realized
that something was wrong. Because he was only a six
month old baby and the sign sorlo kem here a
fatigue and paleness and I'm with him every day, so
I didn't pick up that he was getting paler and
paler and he was just a baby baby's sleep. So
for me, I didn't pick up on anything wrong. And
(15:53):
year she hadn't been walking part that day, who knows
when we would have realized.
Speaker 1 (15:58):
And just lastly, Dakoda, what's your advice for other parents
who may find themselves in similar situations or have friends
or family that go through something what you guys have
been through, what advice would you give them?
Speaker 2 (16:11):
Reach out to other families going through it, or just anyone.
You need to have a support system. You cannot just
sit in there, and I know you don't feel like
talking to anybody, but you just have to. You can't
just sit in the hospital room or wherever and just
keep to yourself. It will be the worst thing that
you can do. You need to have support and talk
to other people. Let it out.
Speaker 1 (16:32):
Really well, said Dakota, Thank you so much for sharing
your story with us. And we're so happy that Eli's
all right and you guys are back to living somewhat
of a normal and happy life. And you've got your
baby girl, now what's her name?
Speaker 2 (16:45):
Aila?
Speaker 1 (16:45):
Baby Aila? Lovely and a family of five, and that
is that going to stay a family of five? Perhaps
plans for another one.
Speaker 2 (16:54):
No, I think, I think, my goodness.
Speaker 1 (16:59):
Thanks so much, too awesome. Thank you. To donate to
Ronald McDonald House and help families like the Edsy's deliveries
can be made to one hundred and forty nine Barker
Street in Randwick, or to help the one thousand Ossie
kids diagnosed with cancer every year. There's a few websites
you can visit Leakemia dot org dot au, Ccia dot
(17:20):
org dot AU, the Cancer Council or the Kids Cancer
Project website. That's all for now and I heart Farsouth
Coast proudly supported by the New South Wales Government. I'm
James Fantasy. Thanks for listening. Catch you next time. iHeart
far South Coast
High are Fast out Coast A I'm James fantasy. Most
people understand raising kids comes with a thousand challenges, especially
if you've got a few little ones, like in my household,
and in the bustle of daily life. You hope everyone
stays happy and healthy. But for a South Coast couple,
their lives changed in a heartbeat when doctors told them
(00:22):
their six month old baby boy, Eli, had a form
of leukemia caused by the rare Philadelphia chromosome cancer gene.
And for Marie, your mum, Dakota edsy, She'll never forget
the moment a diagnosis sent her world spinning. Dakota, take
us back to when you first noticed something was wrong
with your old boy Eli.
Speaker 2 (00:43):
We didn't notice anything was wrong. Actually, we just happened
to be sitting in the waiting room at the doctor
surgery for immunizations and a doctor was just walking past
and she stopped and kind of looked at Eli and
was like, oh, he is quite pale. And I was like, oh,
I don't know, yeah, maybe, and she's like, I'll book
you in with your normal doctor and we'll just have
(01:06):
a look. And so two days later we went back
and saw our normal GP who said that yep, he
was very anemic and sent for blood. But then two
hours later my doctor called me back and he was like,
you need to go to bigger now. They want to
see you down there straight away. So we got in
a car headed straight down to Bega. They did some
(01:27):
blood work and a couple hours later they took us
into a little room and yeah, I told us, we
think it's lakemia.
Speaker 1 (01:34):
Yeah. So that was the sixth of June twenty twenty two.
You took him down to Southeast Regional Hospital in Viga,
where he was diagnosed with leukemia, which was confirmed the
next day, to Sydney Hospital. What was going through your
head in that twenty four hour period.
Speaker 2 (01:50):
Oh, honestly, I don't even know it was. It's all
a muddled mess. It was just very overwhelming. They flew
us up to Sydney after telling us they think we
had the chem here, and then we kind of just
sudden a room all day waiting for the doctors to
come back because they were busy upstairs, so we didn't
see anybody until late that evening, so we kind of
just sat there not knowing what's happening, what's going on,
(02:13):
and just sitting there with the news that you've got
cancer and just yea waiting for the doctors to come.
Speaker 1 (02:19):
I don't imagine it's ever nice to hear that news
about any of your children or any of your family members.
But can you describe what it was like hearing it
about your baby boy.
Speaker 2 (02:31):
It was like something was being ripped out of you.
I instantly just started crying and just broke down. I
was like, I have my man with me, which was
a good support, but yeah, it just felt like you
were being ripped apart when they sit you down in
the room by yourself and tell you that.
Speaker 1 (02:50):
They're just so innocent, and you only want the best
for your children and other people's children. So I can
only imagine.
Speaker 2 (02:58):
Yeah, it's the worst feeling in the world, and especially
not knowing how it is going to turn out, and
just you know, you get hit with all the bad
news and you don't know what's going to happen.
Speaker 1 (03:08):
Little Eli underwent surgery the next day to have a
central line put in so they could start steroids and
chemotherapy straight away. Then doctors came back to you about
a week later to say, your boy doesn't only have leukemia,
but he has an extremely rare form of leukemia which
is not normally found in babies.
Speaker 2 (03:29):
What happened then, Yeah, so the doctor that we'd been
assigned came in and kind of told us what they'd
found in the genetic testing and said, well, now he's
no longer low risk, he is now high risk, so
he'll be moved to the high risk team. So we
had to get a whole new team that doctors come
(03:50):
in and yeah, they kind of said to us, look,
we have no information on this Philadelphia gene in a
child under twelve months old. It is going to be
trial and error. So that's just like another little stab.
It's like, oh, okay, yeah, sure, we're just going to
wing it.
Speaker 1 (04:09):
Yeah, did you feel a bit overwhelmed by that that
most doctors couldn't actually give you answers?
Speaker 2 (04:16):
Especially because our doctor she had reached out to doctors
all over the world to try and get any information
on that that she could, and she managed to find
only one other doctor that had ever seen a case
of it in someone so young, and so there just
really was nothing to go on the treatment. So it
was just we're just going to have to try the
(04:36):
things we normally do and see if it works and
kind of hope the best and we'll definitely do a
bone married transplant because that'll give him the best shot.
But other than that, it's kind of just trial and error.
And it was a very overwhelming when you get told
we don't know what we're doing.
Speaker 1 (04:51):
Really, I can imagine since then you would have been
a bit like a dog with a bone and wanting
to find out as much as you can about the
What have you since found out about Philadelphia chromosome cancer
over the journey.
Speaker 2 (05:06):
Well, I've actually come across another lady in the local
area who her niece had it in Canberra, and so
she was good to talk to. But I also did
a lot of online research and found cases in America
and followed up on their story and what they did
for treatment and everything like that. But yeah, a lot
(05:26):
of it is still just the normal chemo procedure. They
treat it very similarly, but they also have a specific
tablet that they will use to treat it as well
to make sure that it stays away that they don't
use for normal cases.
Speaker 1 (05:41):
And after Eli's first block of chemo the cancer was gone.
How did you feel, firstly when you heard that news?
Speaker 2 (05:48):
It was great that the chemo was working, because that
is a great sign that it's working and he's responding
to the treatment. So obviously that was great, But it
was still nerve wracking because I mean it could have
come at any time. So still nerve wracking, but obviously
it's a great feeling that the chemo was working and
his body was responding to it.
Speaker 1 (06:08):
Yeah, so he was in remission and he did four
blocks of chemo as well as amunotherapy. Then about six
months after Eli was first diagnosed, doctors recommended a bone
marrow transplant, as you mentioned earlier, to keep the cancer away.
I've heard that bone marrow transplants can be quite painful
and uncomfortable. But because your other son, Noah, who was
(06:31):
two at the time, was a genetic match, they recommended
that you make that happen. But how hard or easy
was that decision for you and your partner Jesse to make.
Speaker 2 (06:41):
I think it was an easy decision knowing that for well,
like the doctors said to us, the procedure for a
child having the bone marrow removed isn't overly painful for
them because their bone marrow is still really soft. It
hasn't become hard yet because it's still growing, so they said,
because it's still so soft, the procedure on them isn't
(07:03):
too bad. So I think that helped us make the
decision to do it. And obviously, because a sibling match
for a bone marrow transplant is the best match you
can get it sitter than any other kind of match,
and obviously we wanted to give Eli the best shot
at having the bone marray transpent work and not reject
so I think in that sense it was an easy decision.
(07:25):
So when the bone marra was taken from Noah, he
was under for a couple of hours, but when it
came out he was fine, and an hour later he
was up and running around again, so it didn't even
bother him.
Speaker 1 (07:36):
Yeah, and during this time you were living at Ronald
McDonald house until early March, so for around nine months
your family was split as you and Eli were in Sydney,
while Noah was with your mum Erica in Maruya, and
your partner Jesse traveled back and forth. That must have
presented some challenges.
Speaker 2 (07:55):
Oh, it definitely did, especially because for a three month period,
Eli and I were in full isolation for lockdown, so
no one in no one out, So it was definitely hard,
especially being separated my other son. But we did a
lot of FaceTime and tried to make it work. But
I think at the time it worked, But the aftermath
(08:16):
and the effects that had when we actually came home
on my oldest son who was here, was probably worse.
He had a lot of separation anxiety once we got back.
Speaker 1 (08:24):
Yeah, because I can imagine a two year old probably
couldn't understand, you know, why mum was here every day
and now Mum's gone.
Speaker 2 (08:31):
Yeah, Yeah, he didn't know what was happening and while
we were gone or when or if we were coming back.
And yeah, once we did come back, I couldn't leave
his side. He would not let me go anywhere, not
even to the supermarket without having a meltdown. So it
was worse the effects, I'd say, when we came back
compared to when we were going through it.
Speaker 1 (08:50):
We're in conversation with Maria Mum Dakota Edsy stick around
more soon on our Heartfast South Coast. I art Far
South Coast. HI are Far South Coast. Welcome back, I'm
James Fantasy and we continue our chat with young Mum
Dakota Edsy who's sharing her story of uprooting from Mariya
(09:13):
and moving to Sydney for nine months so her baby boy,
Eli could receive cancer treatment, while her two year old
son Noah stayed on the South Coast with grandmother Erica,
with Jesse traveling back and forth, and how the amazing
support from the Far South Coast community helped the young
family get through a hell of a time when this
(09:35):
was happening, You and Jesse had to stop working. You
still had a mortgage bills coming in, so your mum
Erica and your sister Cassie set up a go Fundme
page for you guys to help pay for petrol and
some of those costs. How did the Far South Coast
community respond to that?
Speaker 2 (09:52):
Oh, beyond anything I could have ever dreamed. They were amazing. Yes,
they managed to raise I think it was like forty
thousand dollars in total for the growth on me, which
is just beyond anything I ever expected. And yet we
have a really amazing community.
Speaker 1 (10:10):
We certainly do. It's now two years since Eli was
first diagnosed. How's the little fellow going.
Speaker 2 (10:17):
Oh, he's doing amazing. He's doing amazing. He's a very funny,
cheeky almost three year old now and looking at him,
you would never have known he's gone through what he did.
Speaker 1 (10:29):
That's so good to hear. And I guess just give
us a bit of an update now on how the
boys are work. You know, has life returned somewhat to
normal for you and Jesse and your family.
Speaker 2 (10:41):
Yeah, it's back to probably as normal as we're going
to get for a while. We're home, my partner's working
full time. I'm currently on maternity leave. We did have
another little baby in February of this year.
Speaker 1 (10:53):
Oh, congratulations, thank you another boy.
Speaker 2 (10:57):
No, finally a girl.
Speaker 1 (10:58):
You got one.
Speaker 2 (11:01):
Yeah, so that was definitely an exciting surprise. She was.
But yeah, the boys are in daycare and loving it.
We're all doing really well, back in a routine, which
is really nice.
Speaker 1 (11:12):
And you also had a bit of a career changed
through this journey as well. Could you just tell us
about that.
Speaker 2 (11:17):
Yeah, of course. I was working for Southern Phone to
a communications company. They were then taken over by AGL
and I still had a job there. They reached out
to me one day and were like, oh, look, we're
going to make you redundant or you can have another
position within the company. You choose what you want. And
obviously at the time I was still in Sydney, so
(11:38):
I wasn't in a position to kind of go to
another position. So I did just say, all right, I'll
become redundant then, and decided to take up studying while
Eli was getting treatment, doing my certificate three in early
titled education. So now that I'm home, I'm working in
the childcare field.
Speaker 1 (11:54):
So good that you were able to use some of
that time that you're in Sydney to study and then
change your career, like you're really enjoying that new role
as well.
Speaker 2 (12:03):
Yeah, definitely, it's definitely what I'm passionate about. But yeah,
studying while I was away was sort a good way
to distress my mind from all the hospital stuff as well.
Speaker 1 (12:11):
And three kids at home isn't enough for you. You
need more when you go to work, exactly. Moving to
a bit more of a serious question I had for you, Dakota,
the new Eurobidella Regional Hospital construction has been given the
green light with the state Significant Development Approval, in saying
that it was originally slated to open in twenty twenty five,
(12:34):
which appears likely now to be pushed back to twenty
twenty seven, and while the new hospital will reportedly open
with increased capacity and access for local chemotherapy and renal dialysis,
New South Wales Health has not yet committed to establishing
radiation therapy services in the region. As someone who's had
to travel from Maria to Bega and Sydney regularly, how
(12:58):
do you feel about that?
Speaker 2 (12:59):
I mean, we definitely need those services. There are so
many people that have to travel so far, and so
many of the people that don't have the means of
getting there and back. We need more services available in
the area, especially as we are such a fast growing
area now and we've got so many more people moving
to the area. We just need to have radiation services available.
Speaker 1 (13:21):
And you still have to take a life for regular
checkups in Sydney, and every time you do, you take
groceries and donations up to Ronald McDonald House for other
families going through similar experiences, and you recently asked the
Maria community to donate as well. How did that go?
Speaker 2 (13:39):
Yeah, So normally when I go up, I go up
every four months. At the moment, I'll normally take up
a bagger stuff myself, but we were going up this
time and I thought, oh, why not reach out and
see if anyone else wants to donate, because you know,
the more I can get up there, the better for
all the families, just because I know when we were
up there, it was always good if you had to
rusbate the hospital or a long date the hospital. You
didn't want to have to go to the shop and
(14:00):
get food, and it was always good when it was
just stuck there in the house that you could access
in the community pantry. So I decided to put a
post on the local notice forwards in the year of
gallery and see if anyone wanted to donate anything. And then, oh,
it was amazing. It definitely was more than I was
expecting for people to reach out and be like, yeah,
we want to donate, we want to do whatever we
(14:21):
can as well. It was an amazing reaction that I
had to the post. I moneyed to get up a
whole car load full of groceries.
Speaker 1 (14:30):
My car was packed, Yeah, I saw the photo. There
was like a floor full of bags.
Speaker 2 (14:35):
Yeah, no, it was huge. It was huge. And I've
even since that's been back, I've had people reach out
and be like, oh, please let us know when you
go up next, Like we want to donate some food
and stuff. So no, the response was amazing.
Speaker 1 (14:46):
At the start of the interview, you mentioned that you
guys didn't actually notice something was wrong. It was the
doctor that walked past and noticed the color of Eli
and mentioned it. I just wanted to ask you, do
you know who that doctor is? And then also, how
grateful are you that they walked past that day?
Speaker 2 (15:05):
Yeah? The doctor was doctor Marie bond here in Maruya,
And oh beyond grateful because we'd actually already been in
and seen a different doctor already that morning and they
didn't pick up on anything. So we were beyond grateful
that she just happened to be walking past and stopped
and noticed that Saint caughtn't right.
Speaker 1 (15:24):
Have you had a conversation with her about that, since I.
Speaker 2 (15:28):
Haven't directly, but my mum has.
Speaker 1 (15:30):
Yeah.
Speaker 2 (15:31):
Yeah, we just got lucky, Like if she hadn't walked
past that day, who knows when we would have realized
that something was wrong. Because he was only a six
month old baby and the sign sorlo kem here a
fatigue and paleness and I'm with him every day, so
I didn't pick up that he was getting paler and
paler and he was just a baby baby's sleep. So
for me, I didn't pick up on anything wrong. And
(15:53):
year she hadn't been walking part that day, who knows
when we would have realized.
Speaker 1 (15:58):
And just lastly, Dakoda, what's your advice for other parents
who may find themselves in similar situations or have friends
or family that go through something what you guys have
been through, what advice would you give them?
Speaker 2 (16:11):
Reach out to other families going through it, or just anyone.
You need to have a support system. You cannot just
sit in there, and I know you don't feel like
talking to anybody, but you just have to. You can't
just sit in the hospital room or wherever and just
keep to yourself. It will be the worst thing that
you can do. You need to have support and talk
to other people. Let it out.
Speaker 1 (16:32):
Really well, said Dakota, Thank you so much for sharing
your story with us. And we're so happy that Eli's
all right and you guys are back to living somewhat
of a normal and happy life. And you've got your
baby girl, now what's her name?
Speaker 2 (16:45):
Aila?
Speaker 1 (16:45):
Baby Aila? Lovely and a family of five, and that
is that going to stay a family of five? Perhaps
plans for another one.
Speaker 2 (16:54):
No, I think, I think, my goodness.
Speaker 1 (16:59):
Thanks so much, too awesome. Thank you. To donate to
Ronald McDonald House and help families like the Edsy's deliveries
can be made to one hundred and forty nine Barker
Street in Randwick, or to help the one thousand Ossie
kids diagnosed with cancer every year. There's a few websites
you can visit Leakemia dot org dot au, Ccia dot
(17:20):
org dot AU, the Cancer Council or the Kids Cancer
Project website. That's all for now and I heart Farsouth
Coast proudly supported by the New South Wales Government. I'm
James Fantasy. Thanks for listening. Catch you next time. iHeart
far South Coast
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