February 12, 2024 • 22 mins
Season 6 Episode 2 When Scott, a childhood cancer survivor turned advocate, and Rosalie, the director of government relations and advocacy from St. Baldrick's Foundation, joined me, Rosaria Kozar, the conversation was nothing short of inspiring. Our dialogue cut through the complexities of advocacy, unraveling how crucial policies like the STAR Act shape the landscape of pediatric cancer care. We shared the often unseen struggles that follow the victory of 'beating' cancer — the continuous health battles, risks of secondary cancers, and the psychological toll on families.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Please always consult with your physicians prior to
making any changes to yourtreatment plan.
Music is courtesy of RyanHamner.
Welcome to Living withScansiety the Cancer Podcast, a
podcast geared to help younavigate the pediatric cancer
world.
As a mother of a child whobattled a soft tissue sarcoma
for over a year, your host,rosaria Kozar, understands and
(00:22):
will help guide you through yourjourney.
She brings the knowledge ofexperts, families, survivors and
other organizations tied to thepediatric cancer world to your
doorstep.
Her mission is to inform,support and promote hope for you
and your family.
Speaker 2 (00:40):
Music.
So for the ambassador I hope Ican like raise awareness about
like the realities of childhoodcancer.
I'm excited to attend more likelocal St Baldrick's events.
I'm excited in two weeks I getto advocate for kids on for kids
(01:04):
with cancer on Capitol Hill formy 11th action days and I also
hope to give sort of like aninsider's look on how cancer
affects the entire family.
Speaker 3 (01:16):
Hi and welcome to Living with Scansiety.
Today I met with two amazingindividuals that both have roles
at St Baldrick's Foundation,and they're going to talk a
little bit about it.
First.
We have Scott, and Scott'scancer journey started rather
young.
He's much older now.
As you will see in a fewminutes, he's a freshman in high
(01:37):
school.
He served as the openingspeaker for the sixth annual
congressional childhood cancersummit and submitted formal
testimony to the HouseAppropriations Committee in
support of full funding for thechildhood cancer survivorship,
treatment, access and research,also known as the STAR Act.
(01:59):
The second individual is alsopart of the St Baldrick's
Foundation.
Her name is Rosalie and inparticular she serves as the
director of government relationsand advocacy for the St
Baldrick's Foundation and theco-chair of the Alliance for
Childhood Cancer.
Speaker 4 (02:16):
Yeah, so you know, we actually have a really big kind
of advocacy day that's comingup in just a few weeks.
This is one that St Baldrick'sworks on with actually a lot of
other members of the childhoodcancer community.
We're actually all we all worktogether in a form of the
Alliance for Childhood Cancer,so it's about 22 different
organizations that all kind ofjoined together to focus on
(02:40):
these specific priorities thatwe have, and I think it's a
really great opportunity forjust a lot of different
organizations that representpatients and families and
providers and doctors and nursesand all sorts of different
groups, and it just makes us areally strong community with,
you know, one voice that we canreally can bring to the Hill.
(03:00):
And so on February 13th and 14thand 14th is the day that we all
head to the Hill we are goingto have almost, or actually more
than, 200 advocates from allover the country coming to talk
about some of our policypriorities.
And this year we are going tobe focusing on appropriations,
which basically just meansgetting money for childhood
(03:22):
cancer funding and then alsosome bills that touch on access
issues and then also drugshortages, which I know is a
thing that affects a lot ofchildhood cancer patients and
providers and I think is kind ofa very of the moment issue that
I'm really excited to talkabout in a few weeks.
Speaker 3 (03:42):
And what in terms of the access issues?
What exactly is that Definitely?
Speaker 4 (03:48):
Yeah, so that is.
It's actually a bill that ourcommunity has been working on
for a few years.
It's called the acceleratingkids access to care act that.
I always trip over the name,but I think I got it right that
time.
And basically this bill willmake it easier for kids with
(04:09):
childhood cancer to access careif they have to cross state
lines.
Basically, I think that's thething that a lot of childhood
cancer patients experience is,you know, they live in an area
where they don't have access toyou know kind of medical centers
or the care or the providersthat they need, and so they will
have to, you know, go toanother state to get that care.
(04:30):
I'm from Alaska originally andthat's a big thing that that
child cancer patients in my homestate have to do is often have
to seek care elsewhere.
And so at the right now, iffamilies are covered under
Medicaid or chip, it can bereally difficult, kind of from
an administrative perspective,to get care and get that make
(04:51):
sure that you're covered forcare if you have to cross state
lines.
So this bill will make iteasier and just kind of make it
a much smoother, simpler processfor kids to access that care.
So it's one that really excitedabout.
I think it affects a lot offamilies and a lot of kids and I
think it'll if we can get itpassed, it'll make a big
difference in our community.
(05:13):
And just for the peoplelistening I know what Medicare
and chip are, but can you justtell the listeners oh, it's
Medicaid, which I'm not sure ifI said it wrong the first time,
but it's Medicaid and chip, andthese are just insurance
programs that cover a lot offamilies and a lot of kids, so a
lot of families who are lowincome or have serious health
(05:35):
issues can will receive coveragethrough through Medicaid and
chip.
It's really important.
Again, I know that a lot offamilies who are affected by
childhood cancer there's a hugefinancial impact and so it's
just something that a lot, of, alot of families in the space
really rely on.
It's really the reallyimportant programs.
Speaker 3 (05:56):
It's so interesting to me and so many people forget
that they can reach out and getpublic health care, and it seems
like something that might be soobvious to others and then
others not so much.
And, like you said, it'simportant to it Absolutely.
(06:16):
No, it's absolutely.
Speaker 4 (06:19):
I'm so sorry.
Speaker 3 (06:21):
No, that's fine.
No, just to have theseavailable for individuals and
give them more awareness aroundit.
So that's great.
Speaker 4 (06:30):
Yeah, it's definitely a thing that I mean.
I think that a lot of peopledon't, I think, realize kind of
the financial impact that reallyserious health conditions can
have on a family, and so I think, kind of getting access to two
programs and coverage andservices that we as Americans
are entitled to is a huge thing,and I really hope that every
(06:51):
family who qualifies for theseprograms is able to get access
to them.
Speaker 3 (06:57):
Yeah, great, and I know, Scott, I don't want to
leave you hanging too long overthere, so you battled leukemia.
Which version was it?
Because I know there's likedifferent types, yeah acute
lymphoblastic leukemia.
Okay, and can you tell me alittle bit about that story and
(07:19):
how old you were and?
Speaker 2 (07:21):
Yeah, so now I'm 15 years old, I'm a freshman in
high school, I was diagnosed atthe age of three and then after
that I went through three and ahalf years of treatment and
during that time I rememberactually kind of a lot of the
experience.
You know, I often felt liketired and nauseous and weak, and
(07:45):
sometimes I would wake up and Iwould be hungry, but like
whenever I would eat, it justmade my stomach hurt, and so
that experience was really longand difficult, and not only the.
Not only were the symptoms likedifficult, but if I were to get
(08:10):
sick or get a fever, I wouldhave to stay in the hospital for
at least two days.
So it was also a little bit ofa lonely experience, in the
sense that I was kept in abubble to stay away from germs
and so I missed out on schooland hanging out with friends.
But I'm still very grateful tobe here looking back on my
(08:33):
experiences.
Speaker 3 (08:35):
And a lot of people say, or I've heard a lot of
people say, oh, cured isn'treally cured, so what does that
mean to you?
Or have you heard that before?
Speaker 2 (08:49):
Yeah, so I think it's definitely like a common
misconception that everything isokay after treatment, but
that's definitely not the caseand there's still plenty of side
effects that are associatedafter treatment.
There's the risk of havingsecond cancers, heart disease,
hearing loss, and so these aresome of the things that are
(09:12):
looked at through the STAR Actto try and help with these after
cancer side effects.
Speaker 3 (09:21):
Okay, wow, is there anything in particular that?
Maybe did you keep in touchwith anybody?
I know you were so young.
Maybe your parents kept intouch with somebody and you see
them going through these sideeffects now.
Speaker 2 (09:33):
Yeah, so I actually, when I went to the Action Days
event for the first time, I meta friend.
He was about the same age as meand he had the same diagnosis,
and he's now going through histhird battle with cancer.
He recently just got CAR T celltherapy, and so now we're
(09:53):
hoping that the third time's acharm and it can hopefully go
away from it this time.
Speaker 3 (10:00):
And do you find that there's a support system for
children that have overcomecancer and are now facing these
challenges?
Speaker 2 (10:09):
Yeah, so the STAR Act helped as the most
comprehensive childhood cancerbill in history.
It has definitely helped withsome of these side effects in
terms of like survivorship, andat school there's like programs
to help me knowing like I've hadmy diagnosis, and so now
there's programs implemented atmy school to help me get like
(10:33):
the resources I need to do well.
Speaker 3 (10:38):
And I see the St Baldrick's Foundation in your
background, so tell me about howyou are involved with them.
Speaker 2 (10:45):
Yeah, so around the time I was diagnosed it was
around Thanksgiving, and myfamily had heard about the St
Baldrick's Foundation as thelargest charity funder of child
cancer research grants worldwide, and so my dad and my brother
(11:07):
wanted to shave their heads tosupport research, and so
naturally I kind of wanted to dothe same thing, follow what
they were doing, and so I hadasked my mom and I was like
really enthusiastic about it,but I think she was definitely a
little bit hesitant and sadbecause she didn't want me to
(11:29):
like take on the stereotypical,like cancer kid look, for as
long as, for as long as possible, you know like she wanted me to
stay the happy and like joyfulkid that I was, but I was really
eager to do it.
So I kept asking her and thenshe finally agreed.
(11:52):
And so, looking back, I stillremember the day that I shaved
my head with St Baldrick's andit really had a big impact on me
because after my diagnosis alot of the opportunities to be a
normal kid were sort of takenaway by cancer, and so it
(12:14):
empowered me to shave my headbecause for the first time since
my diagnosis I was able to likelose my hair on my own terms
like so and fast forward to now.
We sort of stayed close to theSt Baldrick's community and now
(12:34):
I'm really eager to be a 2024ambassador for the foundation.
That's fantastic cancer onCapitol Hill for my 11th Action
Days, and I also hope to givesort of like an insider's look
on how cancer affects the entirefamily.
Speaker 3 (12:54):
And it's interesting because you brought up the
entire family and my son hadcancer or he's passed, but it
does.
Really it is almost a diseasefor the whole family.
Really, you were affected themost going through the treatment
and how did you see itaffecting your family, and are
(13:16):
they still affected today?
Speaker 2 (13:19):
Yeah, so in the ways that it affected my family, my
parents were already like mysister was just born around the
time I was diagnosed, just a fewmonths before, and so they had
to juggle a lot.
By the time I was diagnosed Iremember a lot of the
(13:41):
experiences I had were justbeing in a hospital bed with my
dad, so it was a huge timecommitment.
And it was a commitment for mebecause they were really
responsible for how I would takemy medicines.
We had like a schedule so Icould take all my medicines and
(14:03):
the appropriate doses, but alsomy siblings.
They tried to not lose as muchattention and so they kind of
kept me down to earth.
They were really honest with me, and so I really appreciate
that a lot.
Speaker 3 (14:19):
Yeah, I can imagine just kind of keeping things like
a sense of normalcy.
If you had advice for a parentthat is experiencing their child
going through cancer, whatwould you say to them?
Speaker 2 (14:40):
Yeah.
So I would say stay motivated,because for the most part, I
think your child may actuallyknow more about what's going on
than you think they do, so Ithink it's definitely important
to keep working, even if itseems like there's no end in
sight.
Having looked back, I'm sothankful that my parents worked
(15:04):
as hard as they did to make sureI took the appropriate doses
and kept me on the schedule thatI had, and I'm just so grateful
for everything they did to keepme safe, and that's why I'm so
happy to still be here and havethese advocating opportunities.
Speaker 3 (15:23):
And when you speak about happiness, there's also
the other side of the coin interms of school.
I don't know if you've seen itwith some of your friends that
have gone through it, but I'veheard a lot about it and that's
bullying.
Have you or did you experiencethat?
Or do you see friends that hadcancer experience that?
Speaker 2 (15:42):
For me in school there was a little bit of
insensitivity.
They kind of didn't understandthe experiences and the
challenges that well.
But overall I think theteachers were very accepting of
what I went through.
There was a little bit ofimpoliteness from peers.
Speaker 3 (16:07):
And how did you handle that?
How do you handle questionsthat are inappropriate?
Speaker 2 (16:13):
Yeah.
So if they have honestquestions about my diagnosis,
I'll definitely try to addressthose, because I don't really
see there being any good inbeing closed off about cancer.
If I have the opportunity tospread awareness, I'd definitely
like to do that.
But if there's insensitivequestions I'll try to just
(16:37):
ignore it because I know thechallenges and I am confident
enough to go seek help if I needit for the most part.
But I'm also like I know theydon't know what I went through.
Speaker 3 (16:54):
Exactly.
You don't know, unless you know.
I hate that, it's a littlecliche, but it's true.
So thank you guys.
So much.
Is there anything else you'dlike to share?
Speaker 4 (17:09):
You know, I think that I one thing that I love
about kind of advocacy in thisspace and, like I mentioned, our
upcoming action days later thismonth is just the, the role and
the value that advocates andyou know, members of this
community and people who'veexperienced childhood cancer.
It's kind of the incrediblerole that they've played in
(17:32):
really getting the federalgovernment to take action in
this space.
You know, I think, that I meanwith with childhood cancer.
You know, when we're talkingabout new drug development and
and research and advances, it'sreally not a thing that we can
rely on, you know, privateindustry to do for us.
So we really have to focus on,you know, making sure that the
(17:54):
federal government is reallyinvested in this space and I
think that that has really paidoff.
You know we've seen just hugeadvances, you know, over the
past 10 years or more, and howmuch money the federal
government is investing inchildhood cancer research and
it's led us some, you know,incredible advancements and it's
(18:15):
just really, I think, an areawhere advocates can look around
and really see an incredibleimpact.
So it's just it's a space thatI'm so proud to work in and I'm
so enjoyed meeting justincredible volunteers and
advocates in this space who Ithink can can really show the
difference that they have made.
So I think it's a great spaceto, to, to work in and to.
(18:41):
You know it's an incrediblecommunity and, yeah, I just I
feel like I've learned so muchfrom advocates about you know
how to really talk withlawmakers and the offices, with
a lot of expertise, a lot ofempathy and, just you know,
really talked about why thisissue is important to us, how
(19:01):
you know legislation can reallyaffect families and survivors
and researchers and providers.
I just I think that there isit's a really incredible space
to see advocacy, see the fruitsof our efforts here.
Speaker 3 (19:17):
Yeah, and I don't know if I asked what is the
mission of the Saint Baldrick'sFoundation.
Speaker 4 (19:25):
So I think that I mean we fund childhood cancer
research.
I think that is very basic andI think that that I mean.
One thing that I think a lotabout you know, in terms of why
Saint Baldrick's exists, is kindof what I mentioned earlier is
that we cannot rely on, you know, private companies private, you
know pharmaceutical companiesto do this research.
(19:47):
We have to fill this gap.
So, yeah, the Saint Baldrick'sFoundation, like Scott said, is
the largest funder of childhoodcancer research.
We do incredible work in thisspace and, yeah, I'm so proud to
work for Saint Baldrick's.
Speaker 3 (20:03):
Well, scott, one final question for you.
You are a freshman in highschool, so where do you see
yourself in 10 years?
Where are you going to be?
What are you going to be doing?
Speaker 2 (20:13):
So in 10 years?
How old?
Okay, so, yeah, so I'll beabout 25, right?
So out of college, maybe Dukefor Engineering, we'll see.
Maybe NC State for Engineering,I'm not sure.
But I think I probably like tostart as a biomedical engineer.
(20:34):
You know, spent so much time inthe hospital.
I really want to do what I canto, you know, maybe make a
difference in the field ofchildhood cancer research.
So I think engineering is afield that definitely like
piques my interest.
Speaker 3 (20:49):
That's great, because we need more people that have
that type of you know justengine behind them to work hard,
and sometimes it does come fromthose that have been heavily
affected, and I am so sorry thatyou experienced what you did
and I'm so thankful at the sametime that you participating in
(21:12):
the advocacy and your futuregoals are just so appreciated by
the community, and I wish youall the best.
Speaker 2 (21:22):
Thank you so much.
Speaker 3 (21:24):
And what is the website?
Oh sorry, scott, go ahead.
Speaker 2 (21:27):
I don't know.
Have I just add one more thing?
You know there's a lot of scarystatistics surrounding
childhood cancer.
It's actually the number onedisease killer of kids in the US
, and one in five kids diagnosedunfortunately will not survive,
and you know these.
These are really likedevastating, and so we would
seriously love for any like anymore advocates to help and join
(21:52):
us to advocate for more childcancer research.
It seriously means so much tothe community as a whole.
Speaker 3 (21:59):
Do they have to be from California, because I know
that's where you're located?
Speaker 4 (22:04):
No, we're.
I mean both St Baldrick's andthe Alliance are national
organizations.
We have volunteers from everystate.
Speaker 3 (22:13):
That's great.
So what's the website that theycan go to to sign up for or
help to advocate?
Speaker 4 (22:21):
So we are the St Baldrick's Foundation and we.
There's amazing opportunitiesthat St Baldrick's does in terms
of advocacy, and then we'rejust St Baldrick'sorg, and then
the Alliance for ChildhoodCancer, which hosts this action
days every year and which wewill have in a few weeks, is
AllianceforChildhoodCancerorg.
Speaker 3 (22:42):
Okay, well, thank you guys so much and thank you for
joining me.
Speaker 4 (22:46):
Thank you so much for having us.
Speaker 1 (22:49):
Thank you for tuning in to Living with Scansiety.
Please subscribe to hear moreinformative discussions like
today's.
Please always consult with your physicians prior to
making any changes to yourtreatment plan.
Music is courtesy of RyanHamner.
Welcome to Living withScansiety the Cancer Podcast, a
podcast geared to help younavigate the pediatric cancer
world.
As a mother of a child whobattled a soft tissue sarcoma
for over a year, your host,rosaria Kozar, understands and
(00:22):
will help guide you through yourjourney.
She brings the knowledge ofexperts, families, survivors and
other organizations tied to thepediatric cancer world to your
doorstep.
Her mission is to inform,support and promote hope for you
and your family.
Speaker 2 (00:40):
Music.
So for the ambassador I hope Ican like raise awareness about
like the realities of childhoodcancer.
I'm excited to attend more likelocal St Baldrick's events.
I'm excited in two weeks I getto advocate for kids on for kids
(01:04):
with cancer on Capitol Hill formy 11th action days and I also
hope to give sort of like aninsider's look on how cancer
affects the entire family.
Speaker 3 (01:16):
Hi and welcome to Living with Scansiety.
Today I met with two amazingindividuals that both have roles
at St Baldrick's Foundation,and they're going to talk a
little bit about it.
First.
We have Scott, and Scott'scancer journey started rather
young.
He's much older now.
As you will see in a fewminutes, he's a freshman in high
(01:37):
school.
He served as the openingspeaker for the sixth annual
congressional childhood cancersummit and submitted formal
testimony to the HouseAppropriations Committee in
support of full funding for thechildhood cancer survivorship,
treatment, access and research,also known as the STAR Act.
(01:59):
The second individual is alsopart of the St Baldrick's
Foundation.
Her name is Rosalie and inparticular she serves as the
director of government relationsand advocacy for the St
Baldrick's Foundation and theco-chair of the Alliance for
Childhood Cancer.
Speaker 4 (02:16):
Yeah, so you know, we actually have a really big kind
of advocacy day that's comingup in just a few weeks.
This is one that St Baldrick'sworks on with actually a lot of
other members of the childhoodcancer community.
We're actually all we all worktogether in a form of the
Alliance for Childhood Cancer,so it's about 22 different
organizations that all kind ofjoined together to focus on
(02:40):
these specific priorities thatwe have, and I think it's a
really great opportunity forjust a lot of different
organizations that representpatients and families and
providers and doctors and nursesand all sorts of different
groups, and it just makes us areally strong community with,
you know, one voice that we canreally can bring to the Hill.
(03:00):
And so on February 13th and 14thand 14th is the day that we all
head to the Hill we are goingto have almost, or actually more
than, 200 advocates from allover the country coming to talk
about some of our policypriorities.
And this year we are going tobe focusing on appropriations,
which basically just meansgetting money for childhood
(03:22):
cancer funding and then alsosome bills that touch on access
issues and then also drugshortages, which I know is a
thing that affects a lot ofchildhood cancer patients and
providers and I think is kind ofa very of the moment issue that
I'm really excited to talkabout in a few weeks.
Speaker 3 (03:42):
And what in terms of the access issues?
What exactly is that Definitely?
Speaker 4 (03:48):
Yeah, so that is.
It's actually a bill that ourcommunity has been working on
for a few years.
It's called the acceleratingkids access to care act that.
I always trip over the name,but I think I got it right that
time.
And basically this bill willmake it easier for kids with
(04:09):
childhood cancer to access careif they have to cross state
lines.
Basically, I think that's thething that a lot of childhood
cancer patients experience is,you know, they live in an area
where they don't have access toyou know kind of medical centers
or the care or the providersthat they need, and so they will
have to, you know, go toanother state to get that care.
(04:30):
I'm from Alaska originally andthat's a big thing that that
child cancer patients in my homestate have to do is often have
to seek care elsewhere.
And so at the right now, iffamilies are covered under
Medicaid or chip, it can bereally difficult, kind of from
an administrative perspective,to get care and get that make
(04:51):
sure that you're covered forcare if you have to cross state
lines.
So this bill will make iteasier and just kind of make it
a much smoother, simpler processfor kids to access that care.
So it's one that really excitedabout.
I think it affects a lot offamilies and a lot of kids and I
think it'll if we can get itpassed, it'll make a big
difference in our community.
(05:13):
And just for the peoplelistening I know what Medicare
and chip are, but can you justtell the listeners oh, it's
Medicaid, which I'm not sure ifI said it wrong the first time,
but it's Medicaid and chip, andthese are just insurance
programs that cover a lot offamilies and a lot of kids, so a
lot of families who are lowincome or have serious health
(05:35):
issues can will receive coveragethrough through Medicaid and
chip.
It's really important.
Again, I know that a lot offamilies who are affected by
childhood cancer there's a hugefinancial impact and so it's
just something that a lot, of, alot of families in the space
really rely on.
It's really the reallyimportant programs.
Speaker 3 (05:56):
It's so interesting to me and so many people forget
that they can reach out and getpublic health care, and it seems
like something that might be soobvious to others and then
others not so much.
And, like you said, it'simportant to it Absolutely.
(06:16):
No, it's absolutely.
Speaker 4 (06:19):
I'm so sorry.
Speaker 3 (06:21):
No, that's fine.
No, just to have theseavailable for individuals and
give them more awareness aroundit.
So that's great.
Speaker 4 (06:30):
Yeah, it's definitely a thing that I mean.
I think that a lot of peopledon't, I think, realize kind of
the financial impact that reallyserious health conditions can
have on a family, and so I think, kind of getting access to two
programs and coverage andservices that we as Americans
are entitled to is a huge thing,and I really hope that every
(06:51):
family who qualifies for theseprograms is able to get access
to them.
Speaker 3 (06:57):
Yeah, great, and I know, Scott, I don't want to
leave you hanging too long overthere, so you battled leukemia.
Which version was it?
Because I know there's likedifferent types, yeah acute
lymphoblastic leukemia.
Okay, and can you tell me alittle bit about that story and
(07:19):
how old you were and?
Speaker 2 (07:21):
Yeah, so now I'm 15 years old, I'm a freshman in
high school, I was diagnosed atthe age of three and then after
that I went through three and ahalf years of treatment and
during that time I rememberactually kind of a lot of the
experience.
You know, I often felt liketired and nauseous and weak, and
(07:45):
sometimes I would wake up and Iwould be hungry, but like
whenever I would eat, it justmade my stomach hurt, and so
that experience was really longand difficult, and not only the.
Not only were the symptoms likedifficult, but if I were to get
(08:10):
sick or get a fever, I wouldhave to stay in the hospital for
at least two days.
So it was also a little bit ofa lonely experience, in the
sense that I was kept in abubble to stay away from germs
and so I missed out on schooland hanging out with friends.
But I'm still very grateful tobe here looking back on my
(08:33):
experiences.
Speaker 3 (08:35):
And a lot of people say, or I've heard a lot of
people say, oh, cured isn'treally cured, so what does that
mean to you?
Or have you heard that before?
Speaker 2 (08:49):
Yeah, so I think it's definitely like a common
misconception that everything isokay after treatment, but
that's definitely not the caseand there's still plenty of side
effects that are associatedafter treatment.
There's the risk of havingsecond cancers, heart disease,
hearing loss, and so these aresome of the things that are
(09:12):
looked at through the STAR Actto try and help with these after
cancer side effects.
Speaker 3 (09:21):
Okay, wow, is there anything in particular that?
Maybe did you keep in touchwith anybody?
I know you were so young.
Maybe your parents kept intouch with somebody and you see
them going through these sideeffects now.
Speaker 2 (09:33):
Yeah, so I actually, when I went to the Action Days
event for the first time, I meta friend.
He was about the same age as meand he had the same diagnosis,
and he's now going through histhird battle with cancer.
He recently just got CAR T celltherapy, and so now we're
(09:53):
hoping that the third time's acharm and it can hopefully go
away from it this time.
Speaker 3 (10:00):
And do you find that there's a support system for
children that have overcomecancer and are now facing these
challenges?
Speaker 2 (10:09):
Yeah, so the STAR Act helped as the most
comprehensive childhood cancerbill in history.
It has definitely helped withsome of these side effects in
terms of like survivorship, andat school there's like programs
to help me knowing like I've hadmy diagnosis, and so now
there's programs implemented atmy school to help me get like
(10:33):
the resources I need to do well.
Speaker 3 (10:38):
And I see the St Baldrick's Foundation in your
background, so tell me about howyou are involved with them.
Speaker 2 (10:45):
Yeah, so around the time I was diagnosed it was
around Thanksgiving, and myfamily had heard about the St
Baldrick's Foundation as thelargest charity funder of child
cancer research grants worldwide, and so my dad and my brother
(11:07):
wanted to shave their heads tosupport research, and so
naturally I kind of wanted to dothe same thing, follow what
they were doing, and so I hadasked my mom and I was like
really enthusiastic about it,but I think she was definitely a
little bit hesitant and sadbecause she didn't want me to
(11:29):
like take on the stereotypical,like cancer kid look, for as
long as, for as long as possible, you know like she wanted me to
stay the happy and like joyfulkid that I was, but I was really
eager to do it.
So I kept asking her and thenshe finally agreed.
(11:52):
And so, looking back, I stillremember the day that I shaved
my head with St Baldrick's andit really had a big impact on me
because after my diagnosis alot of the opportunities to be a
normal kid were sort of takenaway by cancer, and so it
(12:14):
empowered me to shave my headbecause for the first time since
my diagnosis I was able to likelose my hair on my own terms
like so and fast forward to now.
We sort of stayed close to theSt Baldrick's community and now
(12:34):
I'm really eager to be a 2024ambassador for the foundation.
That's fantastic cancer onCapitol Hill for my 11th Action
Days, and I also hope to givesort of like an insider's look
on how cancer affects the entirefamily.
Speaker 3 (12:54):
And it's interesting because you brought up the
entire family and my son hadcancer or he's passed, but it
does.
Really it is almost a diseasefor the whole family.
Really, you were affected themost going through the treatment
and how did you see itaffecting your family, and are
(13:16):
they still affected today?
Speaker 2 (13:19):
Yeah, so in the ways that it affected my family, my
parents were already like mysister was just born around the
time I was diagnosed, just a fewmonths before, and so they had
to juggle a lot.
By the time I was diagnosed Iremember a lot of the
(13:41):
experiences I had were justbeing in a hospital bed with my
dad, so it was a huge timecommitment.
And it was a commitment for mebecause they were really
responsible for how I would takemy medicines.
We had like a schedule so Icould take all my medicines and
(14:03):
the appropriate doses, but alsomy siblings.
They tried to not lose as muchattention and so they kind of
kept me down to earth.
They were really honest with me, and so I really appreciate
that a lot.
Speaker 3 (14:19):
Yeah, I can imagine just kind of keeping things like
a sense of normalcy.
If you had advice for a parentthat is experiencing their child
going through cancer, whatwould you say to them?
Speaker 2 (14:40):
Yeah.
So I would say stay motivated,because for the most part, I
think your child may actuallyknow more about what's going on
than you think they do, so Ithink it's definitely important
to keep working, even if itseems like there's no end in
sight.
Having looked back, I'm sothankful that my parents worked
(15:04):
as hard as they did to make sureI took the appropriate doses
and kept me on the schedule thatI had, and I'm just so grateful
for everything they did to keepme safe, and that's why I'm so
happy to still be here and havethese advocating opportunities.
Speaker 3 (15:23):
And when you speak about happiness, there's also
the other side of the coin interms of school.
I don't know if you've seen itwith some of your friends that
have gone through it, but I'veheard a lot about it and that's
bullying.
Have you or did you experiencethat?
Or do you see friends that hadcancer experience that?
Speaker 2 (15:42):
For me in school there was a little bit of
insensitivity.
They kind of didn't understandthe experiences and the
challenges that well.
But overall I think theteachers were very accepting of
what I went through.
There was a little bit ofimpoliteness from peers.
Speaker 3 (16:07):
And how did you handle that?
How do you handle questionsthat are inappropriate?
Speaker 2 (16:13):
Yeah.
So if they have honestquestions about my diagnosis,
I'll definitely try to addressthose, because I don't really
see there being any good inbeing closed off about cancer.
If I have the opportunity tospread awareness, I'd definitely
like to do that.
But if there's insensitivequestions I'll try to just
(16:37):
ignore it because I know thechallenges and I am confident
enough to go seek help if I needit for the most part.
But I'm also like I know theydon't know what I went through.
Speaker 3 (16:54):
Exactly.
You don't know, unless you know.
I hate that, it's a littlecliche, but it's true.
So thank you guys.
So much.
Is there anything else you'dlike to share?
Speaker 4 (17:09):
You know, I think that I one thing that I love
about kind of advocacy in thisspace and, like I mentioned, our
upcoming action days later thismonth is just the, the role and
the value that advocates andyou know, members of this
community and people who'veexperienced childhood cancer.
It's kind of the incrediblerole that they've played in
(17:32):
really getting the federalgovernment to take action in
this space.
You know, I think, that I meanwith with childhood cancer.
You know, when we're talkingabout new drug development and
and research and advances, it'sreally not a thing that we can
rely on, you know, privateindustry to do for us.
So we really have to focus on,you know, making sure that the
(17:54):
federal government is reallyinvested in this space and I
think that that has really paidoff.
You know we've seen just hugeadvances, you know, over the
past 10 years or more, and howmuch money the federal
government is investing inchildhood cancer research and
it's led us some, you know,incredible advancements and it's
(18:15):
just really, I think, an areawhere advocates can look around
and really see an incredibleimpact.
So it's just it's a space thatI'm so proud to work in and I'm
so enjoyed meeting justincredible volunteers and
advocates in this space who Ithink can can really show the
difference that they have made.
So I think it's a great spaceto, to, to work in and to.
(18:41):
You know it's an incrediblecommunity and, yeah, I just I
feel like I've learned so muchfrom advocates about you know
how to really talk withlawmakers and the offices, with
a lot of expertise, a lot ofempathy and, just you know,
really talked about why thisissue is important to us, how
(19:01):
you know legislation can reallyaffect families and survivors
and researchers and providers.
I just I think that there isit's a really incredible space
to see advocacy, see the fruitsof our efforts here.
Speaker 3 (19:17):
Yeah, and I don't know if I asked what is the
mission of the Saint Baldrick'sFoundation.
Speaker 4 (19:25):
So I think that I mean we fund childhood cancer
research.
I think that is very basic andI think that that I mean.
One thing that I think a lotabout you know, in terms of why
Saint Baldrick's exists, is kindof what I mentioned earlier is
that we cannot rely on, you know, private companies private, you
know pharmaceutical companiesto do this research.
(19:47):
We have to fill this gap.
So, yeah, the Saint Baldrick'sFoundation, like Scott said, is
the largest funder of childhoodcancer research.
We do incredible work in thisspace and, yeah, I'm so proud to
work for Saint Baldrick's.
Speaker 3 (20:03):
Well, scott, one final question for you.
You are a freshman in highschool, so where do you see
yourself in 10 years?
Where are you going to be?
What are you going to be doing?
Speaker 2 (20:13):
So in 10 years?
How old?
Okay, so, yeah, so I'll beabout 25, right?
So out of college, maybe Dukefor Engineering, we'll see.
Maybe NC State for Engineering,I'm not sure.
But I think I probably like tostart as a biomedical engineer.
(20:34):
You know, spent so much time inthe hospital.
I really want to do what I canto, you know, maybe make a
difference in the field ofchildhood cancer research.
So I think engineering is afield that definitely like
piques my interest.
Speaker 3 (20:49):
That's great, because we need more people that have
that type of you know justengine behind them to work hard,
and sometimes it does come fromthose that have been heavily
affected, and I am so sorry thatyou experienced what you did
and I'm so thankful at the sametime that you participating in
(21:12):
the advocacy and your futuregoals are just so appreciated by
the community, and I wish youall the best.
Speaker 2 (21:22):
Thank you so much.
Speaker 3 (21:24):
And what is the website?
Oh sorry, scott, go ahead.
Speaker 2 (21:27):
I don't know.
Have I just add one more thing?
You know there's a lot of scarystatistics surrounding
childhood cancer.
It's actually the number onedisease killer of kids in the US
, and one in five kids diagnosedunfortunately will not survive,
and you know these.
These are really likedevastating, and so we would
seriously love for any like anymore advocates to help and join
(21:52):
us to advocate for more childcancer research.
It seriously means so much tothe community as a whole.
Speaker 3 (21:59):
Do they have to be from California, because I know
that's where you're located?
Speaker 4 (22:04):
No, we're.
I mean both St Baldrick's andthe Alliance are national
organizations.
We have volunteers from everystate.
Speaker 3 (22:13):
That's great.
So what's the website that theycan go to to sign up for or
help to advocate?
Speaker 4 (22:21):
So we are the St Baldrick's Foundation and we.
There's amazing opportunitiesthat St Baldrick's does in terms
of advocacy, and then we'rejust St Baldrick'sorg, and then
the Alliance for ChildhoodCancer, which hosts this action
days every year and which wewill have in a few weeks, is
AllianceforChildhoodCancerorg.
Speaker 3 (22:42):
Okay, well, thank you guys so much and thank you for
joining me.
Speaker 4 (22:46):
Thank you so much for having us.
Speaker 1 (22:49):
Thank you for tuning in to Living with Scansiety.
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