0:00

Please always consult with your physicians prior

0:02

to making any changes to your treatment plan

0:04

. Music is courtesy of Ryan Hamner

0:06

. Welcome to Living with Scansiety

0:08

the Cancer Podcast , a

0:10

podcast geared to help you navigate

0:13

the pediatric cancer world . As

0:15

a mother of a child who battled a soft tissue

0:17

sarcoma for over a year , your

0:19

host , rosaria Kozar , understands

0:21

and will help guide you through your journey

0:23

. She brings the knowledge of experts

0:26

, families , survivors and

0:28

other organizations tied to the pediatric

0:30

cancer world to your doorstep . Her

0:33

mission is to inform , support

0:35

and promote hope for you and your

0:37

family .

0:40

Music . So

0:47

for the ambassador I

0:49

hope I can like raise

0:51

awareness about like the realities

0:53

of childhood cancer . I'm excited

0:56

to attend more like local

0:58

St Baldrick's events . I'm

1:00

excited in two weeks I get to advocate

1:02

for kids on for

1:04

kids with cancer on Capitol Hill for my

1:07

11th action days and

1:09

I also hope to give sort of like

1:11

an insider's look on how

1:14

cancer affects the entire family

1:16

.

1:16

Hi and welcome to Living with Scansiety . Today

1:19

I met with two amazing

1:21

individuals that both have roles

1:24

at St Baldrick's Foundation

1:26

, and they're going to talk a little bit about it . First

1:29

. We have Scott , and Scott's cancer

1:31

journey started rather young . He's

1:33

much older now . As you will see

1:35

in a few minutes , he's a freshman in high school

1:38

. He served as

1:40

the opening speaker for the sixth

1:42

annual congressional childhood

1:44

cancer summit and submitted

1:46

formal testimony to the House Appropriations

1:49

Committee in support of full

1:51

funding for the childhood cancer

1:53

survivorship , treatment , access

1:56

and research , also known as the

1:58

STAR Act . The second individual

2:00

is also part of the St

2:03

Baldrick's Foundation . Her name is Rosalie

2:05

and in particular she serves

2:07

as the director of government

2:09

relations and advocacy for the St Baldrick's

2:12

Foundation and the co-chair of

2:14

the Alliance for Childhood Cancer .

2:16

Yeah , so you know , we actually

2:18

have a really big kind of advocacy

2:21

day that's coming up in

2:23

just a few weeks . This is one that St Baldrick's

2:25

works on with actually a lot of other members of

2:27

the childhood cancer community . We're

2:30

actually all we all work together in a form of the

2:32

Alliance for Childhood Cancer , so

2:34

it's about 22 different organizations

2:36

that all kind of joined together to

2:38

focus on these specific priorities

2:41

that we have , and I think it's a really great opportunity

2:43

for just a lot of different organizations

2:45

that represent patients and families

2:48

and providers and doctors

2:50

and nurses and all sorts of different

2:52

groups , and it just makes us a really strong

2:54

community with , you know , one voice

2:56

that we can really can bring to the

2:58

Hill . And so on

3:01

February 13th and 14th and

3:03

14th is the day that we all head to the Hill

3:05

we are going to have almost , or actually

3:08

more than , 200 advocates

3:10

from all over the country coming

3:13

to talk about some of our policy priorities

3:15

. And this year

3:17

we are going to be focusing on appropriations

3:20

, which basically just means getting money

3:22

for childhood cancer funding and

3:24

then also some bills that

3:26

touch on access issues and

3:29

then also drug shortages , which I

3:31

know is a thing that affects a lot of childhood cancer

3:33

patients and providers and I

3:35

think is kind of a very of the moment issue that

3:38

I'm really excited to talk about in

3:40

a few weeks .

3:42

And what in terms of the access

3:44

issues ? What exactly is

3:46

that Definitely ?

3:48

Yeah , so that is . It's actually

3:50

a bill that our

3:52

community has been working on for a few years

3:54

. It's called the accelerating kids access

3:56

to care act that

3:58

. I always trip over the name , but I think

4:00

I got it right that time . And

4:03

basically this bill will

4:05

make it easier for kids

4:09

with childhood cancer to access care

4:11

if they have to cross state lines . Basically

4:13

, I think that's the thing that a lot of childhood cancer

4:16

patients experience is , you

4:18

know , they live in an area where they don't

4:20

have access to you know kind of

4:22

medical centers or the

4:24

care or the providers that they need , and

4:27

so they will have to , you know , go to

4:29

another state to get that care . I'm

4:31

from Alaska originally and that's

4:33

a big thing that that child cancer

4:35

patients in my home state have to do is

4:37

often have to seek care elsewhere

4:40

. And so at the right now

4:42

, if families are covered

4:44

under Medicaid or chip , it can be really difficult

4:46

, kind of from

4:48

an administrative perspective , to get

4:51

care and get that make sure that you're covered for care

4:53

if you have to cross state lines . So this

4:55

bill will make it easier and just kind of make it a

4:57

much smoother , simpler process for

5:00

kids to access that care . So it's one that

5:02

really excited about . I think it affects a lot of

5:04

families and a lot of kids and

5:07

I think it'll if we can get it passed

5:09

, it'll make a big difference in our community . And

5:13

just for the people listening

5:15

I know what Medicare and chip are , but

5:17

can you just tell the listeners

5:19

oh , it's Medicaid , which

5:22

I'm not sure if I said it wrong the first time , but it's Medicaid

5:24

and chip , and these are just insurance

5:27

programs that cover a lot

5:29

of families and a lot of kids , so

5:32

a lot of families who are low income

5:34

or have serious health issues can

5:36

will receive coverage through through Medicaid and

5:38

chip . It's really important . Again

5:41

, I know that a lot of families

5:44

who are affected by childhood cancer

5:46

there's a huge financial impact

5:49

and so it's just something that a lot

5:51

, of , a lot of families in the space really rely

5:53

on . It's really the really important programs .

5:56

It's so interesting to me and so

5:58

many people forget

6:00

that they can reach out and

6:02

get public health

6:05

care , and it seems

6:07

like something that might be so obvious

6:09

to others and then others not

6:12

so much . And , like you

6:14

said , it's important to it

6:16

Absolutely . No

6:18

, it's absolutely .

6:19

I'm so sorry .

6:21

No , that's fine . No , just to have these

6:23

available for individuals

6:25

and give them more awareness

6:28

around it . So that's great .

6:30

Yeah , it's definitely a thing that I mean . I

6:32

think that a

6:34

lot of people don't , I think , realize kind of

6:36

the financial impact that really

6:38

serious health conditions can have on a family

6:41

, and so I think , kind of

6:43

getting access to two programs

6:45

and coverage and services that we

6:48

as Americans are entitled to is a huge thing

6:50

, and I really hope that every family who qualifies

6:52

for these programs is able to get

6:55

access to them .

6:57

Yeah , great , and I

6:59

know , Scott , I don't want to leave you hanging too

7:01

long over there , so you

7:04

battled leukemia

7:07

. Which version was it ? Because I know

7:09

there's like different types , yeah

7:12

acute lymphoblastic leukemia . Okay

7:15

, and can you tell me a little bit about

7:17

that story and how

7:19

old you were and ?

7:21

Yeah , so now I'm

7:24

15 years old , I'm a freshman

7:26

in high school , I was diagnosed

7:28

at the age of three and then after

7:31

that I went through three and a half years of treatment and

7:34

during that time I

7:36

remember actually kind of a lot of the

7:38

experience . You know , I

7:41

often felt like tired

7:43

and nauseous and weak , and sometimes I

7:46

would wake up and I

7:48

would be hungry , but like whenever

7:51

I would eat , it just made my stomach hurt , and

7:54

so that experience

7:56

was really long and difficult

7:58

, and

8:01

not only the

8:04

. Not only were the symptoms like difficult

8:06

, but if I were to

8:08

get sick or get a fever

8:11

, I would have to stay in the hospital

8:13

for at least two days . So it was also

8:15

a little bit of a lonely experience , in

8:17

the sense that I was kept

8:20

in a bubble to stay away from germs

8:22

and so I missed out on school

8:24

and hanging out with friends . But

8:29

I'm still very grateful to be here

8:31

looking back on my experiences

8:34

.

8:35

And a lot of people say

8:38

, or I've heard a

8:40

lot of people say , oh

8:42

, cured isn't really cured

8:44

, so what does that mean to you

8:47

? Or have you heard that before ?

8:49

Yeah , so I think it's definitely like a

8:51

common misconception that everything is

8:53

okay after treatment , but

8:56

that's definitely not the case and

8:58

there's still plenty of side effects

9:00

that are associated after treatment

9:02

. There's the risk of

9:05

having second cancers , heart

9:07

disease , hearing loss , and

9:10

so these are some of the things that are looked at

9:12

through the STAR Act

9:14

to try and help

9:18

with these after cancer side effects .

9:21

Okay , wow , is there anything in

9:23

particular that ? Maybe did

9:25

you keep in touch with anybody ? I know you were

9:27

so young . Maybe your parents kept

9:29

in touch with somebody and you see them going

9:31

through these side effects now .

9:33

Yeah , so I

9:35

actually , when I went to

9:37

the Action Days event for the first

9:39

time , I met a friend . He was about

9:42

the same age as me and he had the same diagnosis

9:45

, and he's now going through his

9:47

third battle with cancer . He

9:49

recently just got CAR T cell

9:51

therapy , and so now

9:53

we're hoping that the third time's

9:55

a charm and it can hopefully go away

9:57

from it this time .

10:00

And do you find that there's a support system

10:02

for children that

10:04

have overcome cancer and are now facing

10:07

these challenges ?

10:09

Yeah , so the

10:12

STAR Act helped as the most comprehensive

10:15

childhood cancer bill in history . It

10:17

has definitely helped with some of these side effects in

10:20

terms of like survivorship , and

10:22

at school there's like programs to help

10:25

me knowing like I've

10:27

had my diagnosis , and so now

10:29

there's programs implemented at my

10:31

school to help me get like

10:33

the resources I need to do

10:35

well .

10:38

And I see the St Baldrick's Foundation

10:40

in your background , so tell me about

10:42

how you are involved with them

10:44

.

10:45

Yeah , so around the time

10:47

I was diagnosed it was

10:50

around Thanksgiving , and

10:52

my family had heard about the St Baldrick's

10:54

Foundation as the

10:57

largest charity funder of

11:00

child cancer research grants

11:02

worldwide , and

11:04

so my dad and my brother

11:06

wanted to shave their heads

11:08

to support research , and

11:11

so naturally I kind of wanted

11:13

to do the same thing , follow

11:15

what they were doing , and so I had asked my

11:17

mom and

11:19

I was like really enthusiastic about it

11:21

, but I think she was definitely

11:24

a little bit hesitant and sad

11:26

because she didn't

11:28

want me to like take on

11:30

the stereotypical , like

11:32

cancer kid look , for as long as

11:35

, for as long as possible , you know like she

11:37

wanted me to stay

11:41

the happy and

11:43

like joyful kid

11:45

that I was , but I was

11:47

really eager to do it

11:49

. So I kept asking her and then she finally

11:51

agreed . And so , looking back , I

11:54

still remember the day that I shaved

11:56

my head with St Baldrick's and

11:59

it really had

12:01

a big impact on me because after

12:05

my diagnosis a lot of

12:07

the opportunities to be

12:09

a normal kid were sort of taken

12:11

away by cancer , and so it empowered

12:14

me to shave my head because for

12:16

the first time since my diagnosis

12:18

I was able to like

12:21

lose my hair on my

12:23

own terms like so and

12:27

fast forward to now . We sort of

12:29

stayed close to

12:32

the St Baldrick's community and

12:34

now I'm really eager to be a

12:36

2024 ambassador for the foundation

12:38

. That's fantastic

12:41

cancer on Capitol Hill for my

12:43

11th Action Days , and

12:46

I also hope to give sort of like an insider's

12:48

look on how cancer affects

12:51

the entire family .

12:54

And it's interesting because you brought up

12:56

the entire family and my son

12:58

had cancer or he's passed , but

13:01

it does . Really it is almost

13:03

a disease for the whole family

13:05

. Really , you were

13:08

affected the most going through the treatment

13:10

and how

13:12

did you see it affecting

13:14

your family , and are

13:16

they still affected today ?

13:19

Yeah , so in

13:22

the ways that it affected my family

13:24

, my parents

13:26

were already like my sister was

13:28

just born around the time I

13:30

was diagnosed , just a few months

13:32

before , and so they

13:35

had to juggle a lot . By

13:37

the time I was diagnosed I

13:40

remember a lot of the experiences I had

13:42

were just being in a hospital

13:44

bed with my dad , so

13:47

it was a huge time commitment

13:49

. And it was a commitment for me because they were

13:53

really responsible

13:55

for

13:57

how I would take my medicines . We had like

14:00

a schedule so I could take

14:02

all my medicines and the appropriate doses

14:04

, but also my siblings

14:06

. They tried to

14:09

not lose as much attention and

14:11

so they kind of kept me down to

14:13

earth . They were really honest

14:15

with me , and so I really appreciate

14:18

that a lot .

14:19

Yeah , I can imagine just kind of keeping

14:21

things like a sense of normalcy

14:24

. If you

14:26

had advice for

14:29

a parent

14:31

that is experiencing

14:34

their child going through cancer , what

14:36

would you say to them ?

14:40

Yeah . So I would

14:42

say stay motivated

14:44

, because for the most part , I

14:46

think your child may actually know more about

14:49

what's going on than you think

14:51

they do , so I think it's definitely important

14:53

to keep working

14:55

, even if it seems

14:58

like there's no end in sight . Having

15:00

looked back , I'm so

15:02

thankful that my parents worked

15:04

as hard as they did to make sure

15:07

I took the appropriate doses

15:09

and kept me on the schedule that I had

15:11

, and I'm just so grateful for

15:14

everything they did to keep me safe

15:16

, and that's why I'm so happy

15:18

to still be here and have these advocating

15:21

opportunities .

15:23

And when you speak about happiness , there's also

15:25

the other side of the coin in

15:27

terms of school . I don't know if you've

15:29

seen it with some of your friends that

15:31

have gone through it , but I've heard a lot

15:34

about it and that's bullying . Have

15:36

you or did you experience that

15:38

? Or do you see friends that had cancer

15:40

experience that ?

15:42

For me in school there was a

15:44

little bit of insensitivity

15:46

. They kind

15:48

of didn't understand the

15:51

experiences and the challenges that well

15:53

. But overall I

15:55

think the teachers were very accepting

15:58

of what I went through . There

16:00

was a little bit of impoliteness

16:04

from peers .

16:07

And how did you handle that ? How do you handle

16:09

questions that are inappropriate

16:11

?

16:13

Yeah . So if they have honest

16:15

questions about my diagnosis , I'll definitely

16:18

try to address those , because

16:20

I don't really

16:22

see there being any good in being closed

16:24

off about cancer . If

16:27

I have the opportunity to spread awareness , I'd

16:29

definitely like to do that . But if

16:32

there's insensitive questions

16:34

I'll try to just

16:37

ignore it because I know the challenges and

16:42

I am confident enough to

16:45

go seek help if I

16:47

need it for the most part . But

16:49

I'm also like I know

16:52

they don't know what I went through .

16:54

Exactly . You don't

16:56

know , unless you know . I

16:58

hate that , it's a little cliche , but

17:00

it's true . So

17:03

thank you guys . So much . Is there anything

17:05

else you'd like to share ?

17:09

You know , I think that I one

17:12

thing that I love about kind of advocacy

17:14

in this space and , like I mentioned , our

17:16

upcoming action days later

17:18

this month is just the

17:20

, the role and the value that

17:23

advocates and you know

17:25

, members of this community and people

17:27

who've experienced childhood cancer . It's

17:29

kind of the incredible role that they've played in

17:31

really getting the federal government to

17:34

take action in this space . You

17:36

know , I think , that I mean with with childhood

17:38

cancer . You know , when we're talking about

17:40

new drug development and

17:42

and research and advances , it's

17:44

really not a thing that we can rely on

17:46

, you know , private industry to

17:49

do for us . So we

17:51

really have to focus on , you know

17:53

, making sure that the federal government is really invested

17:56

in this space and I

17:58

think that that has really paid off . You

18:00

know we've seen just huge advances

18:02

, you know , over the past 10

18:05

years or more , and how

18:07

much money the federal government is investing

18:09

in childhood cancer research and

18:12

it's led us some , you know , incredible

18:14

advancements and it's just really

18:16

, I think , an area where advocates

18:18

can look around and really see an

18:21

incredible impact . So

18:23

it's just it's a space that I'm so proud

18:25

to work in and I'm so enjoyed

18:27

meeting just incredible volunteers

18:29

and advocates in this space who I

18:31

think can can really show the

18:34

difference that they have made . So I think it's

18:36

a great space to , to

18:39

, to work in and to . You

18:41

know it's an incredible community

18:43

and , yeah , I just

18:45

I feel like I've learned so much from advocates about

18:48

you know how to really talk with lawmakers

18:50

and the offices , with

18:52

a lot of expertise , a lot of empathy

18:56

and , just you know , really talked

18:58

about why this issue is important to us , how

19:01

you know legislation can really

19:03

affect families and survivors

19:05

and researchers and providers

19:07

. I just I think that there

19:09

is it's a really incredible

19:11

space to see advocacy

19:14

, see the fruits of our efforts here .

19:17

Yeah , and I don't

19:19

know if I asked what is the mission

19:22

of the Saint Baldrick's Foundation .

19:25

So I think that I

19:27

mean we fund childhood cancer research . I

19:29

think that is very basic

19:31

and I think that

19:33

that I mean . One thing

19:35

that I think a lot about you know , in terms of why

19:38

Saint Baldrick's exists , is kind of what I

19:40

mentioned earlier is that we cannot rely

19:42

on , you know , private companies

19:44

private , you know pharmaceutical companies to do this

19:46

research . We have to fill this

19:48

gap . So , yeah , the

19:51

Saint Baldrick's Foundation , like Scott said

19:53

, is the largest funder of childhood cancer research

19:55

. We do incredible work in this space

19:58

and , yeah

20:00

, I'm so proud to work for Saint Baldrick's

20:02

.

20:03

Well , scott , one final question for

20:05

you . You are a freshman

20:07

in high school , so where do you see yourself in 10

20:09

years ? Where are you going to be ? What

20:11

are you going to be doing ?

20:13

So in 10 years ? How

20:15

old ? Okay , so

20:17

, yeah , so I'll be about 25 , right

20:19

? So out of college , maybe

20:23

Duke for Engineering , we'll

20:25

see . Maybe NC State

20:27

for Engineering , I'm not sure . But I

20:30

think I probably like to start as

20:32

a biomedical engineer . You know , spent

20:36

so much time in the hospital . I really want

20:38

to do what I can to , you know , maybe make

20:41

a difference in the field of

20:43

childhood cancer research . So I think engineering

20:46

is a field that definitely like piques my

20:48

interest .

20:49

That's great , because we need

20:51

more people that have that

20:54

type of you know just engine

20:56

behind them to work hard , and sometimes

20:58

it does come from those that have

21:00

been heavily affected , and

21:04

I am so sorry that you experienced

21:07

what you did and I'm so

21:09

thankful at the same time that you participating

21:11

in the advocacy and

21:14

your future goals are

21:16

just so

21:18

appreciated by the community , and I wish you

21:20

all the best .

21:22

Thank you so much .

21:24

And what is the website ? Oh sorry , scott , go

21:26

ahead .

21:27

I don't know . Have I just add one more

21:29

thing ? You know there's a lot of scary

21:31

statistics surrounding childhood cancer

21:33

. It's actually the number one disease

21:36

killer of kids in the US , and one

21:38

in five kids diagnosed unfortunately

21:41

will not survive , and you know these . These

21:43

are really like devastating , and

21:46

so we would seriously love

21:48

for any like any more advocates

21:50

to help and

21:52

join us to advocate for more child

21:55

cancer research . It seriously means so much

21:57

to the community as a whole .

21:59

Do they have to be from California , because I

22:01

know that's where you're located ?

22:04

No , we're . I mean both

22:06

St Baldrick's and the Alliance

22:08

are national organizations . We have

22:10

volunteers from every state .

22:13

That's great . So what's the website that they

22:15

can go to to sign

22:17

up for or help to advocate

22:20

?

22:21

So we are the St Baldrick's Foundation and

22:23

we . There's amazing

22:26

opportunities that St Baldrick's does

22:28

in terms of advocacy , and then we're just St Baldrick'sorg

22:31

, and then the Alliance for Childhood Cancer

22:33

, which hosts this action days every

22:36

year and which we will have in a few weeks , is

22:38

AllianceforChildhoodCancerorg

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.

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Okay , well , thank you guys so much and

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