Hello everyone and welcome to the within range coaching podcast.
I'm Ranger certified holistic success coach.
And in this podcast, I'm breaking down the journey that entrepreneurs face as they start
their organization, find solutions to the roadblocks in their way and create an impact
that lasts.
So if you're an entrepreneur, nonprofit leader or purpose driven community member that wants
to learn how to grow your impact and develop yourself as the person behind the mission,
then this podcast is for you.
I know you're just as eager to get started as I am.
So let's jump right in.
Good morning, good afternoon and good evening everyone.
And welcome to today's episode.
Doing my walk across America portion of the podcast still.
And I have as of now made it through the state of Alabama currently sitting pretty much just
right on the border of Mississippi and Alabama.
And I am joined today by someone that helped make my Alabama portion possible.
Her and her husband were able to shuttle me around a little bit, offered me a place to
stay in their nice little shed up in what northern Alabama area.
And it was super nice, super sweet of them.
I really appreciated my time with them.
They made me feel right at home.
At one point I accidentally made a comment about us having cookies on the table or we
having something available.
And then I realized, wait a second, this isn't my house.
Why am I saying these things?
And I think that just goes to show just like how great of people there are in the world.
And as we were talking, she mentioned that she works for a nonprofit.
So that made my coach flags go up and go my podcast ears like, oh, wait a second, what
do you mean you work for a nonprofit?
And I mean, I'll let her talk more about it.
But today we're joined by Ashley Rogers and I looked her up on the internet and I found
that she was, well, she is a pediatric oncology nurse.
I think I said that right.
And perfect.
Okay.
And geez, I mean, she's been in the game for a while.
She has 10 plus years of experience.
She was summa cum laude with her master's degree in pediatric primary care and the Sigma
Theta Tau Honor Society of Nursing Care Champion Award recipients, nurse navigator, all these
great things.
And she works for the Chad Tuff DIPG Foundation.
I can list everything else that she has on this website, but let's go ahead and say hello
to Miss Ashley Rogers.
Ashley, how are you doing?
Good, how are you?
I'm doing pretty good.
Just hanging out.
I'm trying to make sure I say all the right things.
And I mean, like we were talking right before we jumped on about all the different abbreviations
and everything you have, I guess just to kind of introduce yourself in a way that makes
sense to the listeners rather than me just listing off stuff off a website.
Why don't you introduce yourself and tell everyone why you're here?
So all of those acronyms, it basically stands for I'm a pediatric nurse practitioner.
Long story short, that's all it is.
It's just a pediatric nurse practitioner and it's divided into acute care and primary care.
So that PC at the end of mine is primary care.
So it's basically like I could work in a doctor's office.
I can see kids on a routine basis, things like that.
Like I can treat children like a pediatrician would for the most part.
So long story short, that's what all that means.
Gotcha.
OK, so a kid doctor.
Kind of.
Kind of, yeah.
OK, so when you say you work with pediatrics, I know that you're more so in the oncology
aspect of it.
So could you explain a little bit of how those two relate with your experience in the education
that you have?
So like in Alabama, you can't specify pediatric oncology nurse practitioner.
So I just did pediatric nurse practitioner.
But in that, like when you do pediatrics, you can work with any specialty as long as
the child is under 21 years old.
So I can do anything within pediatrics.
I just chose oncology because that's where my heart is.
And so that is how I ended up in the oncology space treating children with cancer.
Gotcha.
And to kind of what's the word, align our conversation today with a purpose.
Like what would you say is your intention overall for our conversation?
Really to be open to opportunity, even though it may not be exactly like the plan that you
thought you had for your life and direction that it was going, because I'm not where I
thought I would be 15 years ago.
Yeah.
No.
And again, we talked a little bit off camera about that.
And it sounds like a lot of what you were planning beforehand, it was kind of like this
was something that you thought about when you were younger and then it changed and then
it changed again and then it changed again while you were working in it.
And now you're somewhere completely different.
Yes.
Which is a lot of vagueness, but we'll get into more of the specifics in a second.
But yeah, why don't we just kind of jump into your background?
Like what is it that made little Ashley go, I want to be a pediatric oncologist slash
I want to do all these other things.
What got us here?
So backstory, my dad was diagnosed with mesophilioma when I was nine years old.
At the time, it was extremely rare.
There was only two cases out of a million.
And so it took a very long time to figure out exactly what he had.
He lived five months to the day from he started having symptoms and then literally five months
to the day he passed away.
So it was extremely fast and absolute whirlwind.
And at that time, like I was young enough, I didn't really know exactly what was going
on.
I didn't understand it.
I knew he had cancer.
I knew it was rare.
I knew they didn't know how to treat it.
And at the time, the longest anyone had lived was eight months with it.
So it was extremely rare, but that's kind of like what threw me into like the oncology
world.
And I remember saying, you know, when people would ask you back then, like, oh, what do
you want to be when you grow up?
Like, I want to be an oncologist because I want to work with cancer.
I want to help screen cancer because that's what my daddy was going through.
And I remember thinking one day, like, just thinking to myself, like, what?
Working with kids, kids would be fun to work with.
Or if there's anything like pediatric oncology, like at the time, not knowing that that was
even such a thing.
And so when people would ask, like, I want to be a pediatric oncologist, how on earth
is a 10 year old like, where did you come up with this?
Like nobody says those kind of things.
Yeah.
And it's interesting that you were able to kind of just put that you in your own mind,
it sounds like you invented the field almost just by.
Yeah, I had zero idea that there was even such a thing as pediatric oncology when I
was that age.
I had no idea.
I just thought like, I like working with kids and I want to do cancer.
So let's just put those two together.
Like maybe there's such a thing as that.
And so that's like, that's kind of how I've ended up.
Like initially, that's where my thought process came from.
But of course, like I was in fourth grade and at the time, like, was I not planning,
like really seriously considering like, what am I going to do for the rest of my life?
So like I get up in high school and it's you really start thinking like, okay, what I want
to do and for some reason that thought of being pediatric oncologist and just completely
left my mind.
And it was not in my mind at all of like things that I wanted to do.
I considered accounting.
I considered being like a math professor.
I considered doing all sorts of things.
And really like in high school when I was like figuring out what I wanted to do, I had
decided I was going to be an engineer.
And I really wanted to do, I consider my biomedical engineering and that was like the closest
to the medical field that I got.
But I had actually settled on civil engineering and architectural engineering is what I had
settled on that I really wanted to do.
Gotcha.
And it's funny you say biomedical engineering because there was a very, very brief period
where I considered that from animal science to biomedical.
And I am so glad I did not because I am not the greatest at all the maths and sciences
and organic chemistry.
But that's interesting that for you, it kind of just left your mind entirely.
Like what do you think caused it?
Was it like an external pressure?
Was it just you just forgot?
Like what?
I have no idea.
Like looking back, it's so odd and I'm like, why didn't I consider that?
Like that's what I wanted to do when I was little.
And that's what I told everybody I wanted to do.
But for some reason, I don't know, I guess I just got distracted by because I guess when
they're talking to you about it in high school, they're thinking like they say like, think
about what you like doing.
Think about you know, like what you enjoy like in school and what do you want to do?
And math was my favorite subject.
Because I guess that's kind of like, I just went down that math pathway and like, well,
what can I do with math and what jobs entail math?
And I really I hated health.
I hated like learning about the body and that kind of stuff.
Like I took physics class instead of taking like a biology class because I was like, I'll
never need that.
I don't need to know like what muscles are in the body and what organs and how they work.
I don't need that.
I'm doing physics.
I'm building buildings.
Yeah, exactly.
I'm making things happen.
Yes.
So instead I took physics in high school and I guess I just got distracted by I like doing
math.
Let's figure out something to do with math.
And I never ever thought that I would end up in nursing at all.
Gotcha.
So there was that shift from pediatric oncology into engineering.
When did that switch?
I mean, we listed everything off.
It's not like you just got back into nursing and all that.
Like you've been in it for a while.
So that switch happened right around high school.
When did it switch back to pediatric oncology?
So I had decided like in high school, I had decided I was doing engineering.
I had already toured colleges.
I had a plan.
I was already set to go to Auburn for engineering.
And then the stock market crashed in 2008, which was my senior year in school.
When the stock market crashed in 2008, people in engineering were getting laid off and you
weren't finding jobs in engineering.
There was absolutely nothing.
And so I had a panic moment where I seriously I was like, I need to find a job that I can
do no matter what.
No matter what the economy looks like, I need to find something where I'm always going to
be able to find a job no matter where I go.
Because I was like, I also don't know where I'm going to end up.
Like I don't know if I'm going to stay in Alabama or if I'm going to go anywhere else.
I need to find a job that is available everywhere at any time.
And at that time, I was like, I don't want to go to school for four years and get out
and not be able to find a job.
So that is how I changed from engineering.
So it's like, you know what, nurses are everywhere.
Nurses can do so many different things.
They are always going to be needed.
No matter what the economy is, nurses will always be needed.
And so that is literally how I ended up in nursing.
I actually applied for the nursing program that I got into the very last day that they
were accepting applications because it was like really last minute change of like, oh
God, I'm going to have to do something.
So I called the school and I was like, hey, I'm going to try to apply.
Can you figure out like how to get me a number so that I can do this?
Because the application is closed today.
And sure enough, they did.
You know, like it was, they worked with me really well.
And so I got accepted.
That's how I got accepted into the nursing program.
And then like even going through nursing school, I was like, I don't know what I want to do.
I don't know what area of nursing I want to do.
I don't know how I want to do this.
I have zero idea.
I just know I'm going to be a nurse, but I don't know what I'm going to do with it yet.
And that's so interesting because when you're saying that it sounded like that, what, 2008
hit market crashed.
We all know the story.
And then you're like, okay, I can't do engineering because it's one of those jobs that aren't,
I guess we'll use the COVID terms like essential, right?
Right.
And I thought you were going to say that I remember that I wanted to be a pediatric oncologist
and that didn't happen for you.
Like even now during school, you're not remembering that that was something that little Ashley
had kind of declared one day.
Like when, when did that you remember that?
It was very, it's one of those things like doors just kind of opened.
And I ended up in positions that kind of led me back to that without me actually making
that determination.
I'm like, oh yeah, I really wanted to do this.
So at the time when I got out of high school, I was like, well, if I'm going to do nursing,
I need to get some background knowledge on medical stuff.
So I started working at a local hospital just to get some like base knowledge because at
that point my whole, my whole idea was based around engineering.
So I was like, I need to learn this stuff.
So I was working at a local hospital.
I was miserable.
I was working night shift.
It was with just med surge, which is a hot fudge of everything you can imagine.
And it was adults.
And I hated it.
It was absolutely awful.
I learned so much, but I hated it.
And so I was doing that like even when I started nursing school, I was like, I'm going to push
through this.
I've got to do this.
I know this is not what I want to do.
So I got to figure out something else that I want to do.
And so I was working about an hour away from where I was living, going to school and I
was driving back once a week on my off day from school to work.
And so at the time I was spending more in gas driving back than what I was making in
that one day that I was actually working there.
So I kept applying to Huntsville hospital.
I was trying to get in.
That was where I was going to school at.
And I was like, I need to try to get a job closer.
So I kept applying and kept applying.
I finally got a call back one day and they wanted to interview me for the pediatric floor.
And I was like, okay.
So I actually had set up two interviews for that day.
One was for the med search for that.
I was actually doing clinicals on at the time and the nurse manager had basically said like,
we are desperate for help.
If you want to do this, you have the job.
I set up two interviews that day.
I went to the pediatric interview and then I turned around and went straight to the med
search interview.
I left the med search interview and she was like, okay, you'll be getting a call from
HR.
We'll set up a time.
Like we'll discuss orientation and all that kind of stuff.
It was basically like, you have this job because we have nobody.
We're desperate for help.
And I was thinking, man, I really don't want to do this.
Like this is, I know what I'm getting into and it's the same job that I've been doing.
I was like, it's just closer.
I just really, I don't want to do this.
But as I was pulling out of the parking garage that day, I got a call from HR and I was like,
shoot, what am I going to do?
Am I going to tell them like, yes, I'll take it?
Like what am I going to do?
And then I have a little girl on the phone and she was like, oh, I was just calling to
offer you a job and she's like, well, this is odd.
I'm calling to offer you two jobs.
And she said, you're actually, you have an offer from the pediatric floor and you have
an offer from the Med Search floor.
So like, which one would you rather do?
And I literally told her, I said, you know what?
I have never done pediatrics before, so let's try that one.
Because I know I don't want to do Med Search.
So I said, I've never done pediatrics.
Let's do pediatrics.
Let's try that.
So that's how I ended up back in the pediatric world.
And I literally, I remember thinking like once I started that job within the first week,
I was like, this is the best thing ever.
Like kids is what I want to do.
I want to do pediatrics.
So at that time, like it was sad, I was like, okay, well, now I know I'm going to do pediatrics.
But at that time I was still considering like school nurse.
Do I want to work in the hospital?
Like how do I want to do pediatrics?
And oncology still never crossed my mind.
And it's kind of odd because Huntsville Hospital was actually a St. Jude affiliate clinic.
And so they are the place where all of the cancer children that are treated at St. Jude
come who live in this area.
And so it wasn't until I had my first St. Jude patient on the pediatric floor that I
was like, this is it.
Like, this is what I want to do.
I had no idea this was even an option.
And that was really after I wanted to do intensive stuff.
So I had gotten a job in the pediatric ICU.
That I was like, this is what I want to do.
But really like when I took care of my first St. Jude patient there, that was, they were
the least intensive for the most part.
And the other nurses didn't like them.
I was like, I love these patients.
And so they would always give me the St. Jude patients.
And so that's how I really got back into, I want to do pediatric oncology.
I'm like, oh, we're sitting here.
I'm like, so it's like, you got lined up with the pediatrics.
You got lined up with the oncology.
Did you make that?
I don't know why I'm so dead set on like, did you make that connection that it was like,
this is what I wanted when I was small and now I'm grown and I'm doing it?
Yeah, no, it actually, that didn't click.
I had started nurse practitioner school because it was like, okay, I know I don't want to
work in the hospital for the rest of my life, so I need to do something else.
So I'd actually started nurse practitioner school.
And I begged them to let me take a chemo course so that I could administer chemo in the ICU.
And at that time they required you to have worked in the ICU for at least two years.
And I was right at the edge of like my two years being in there.
So I begged them to let me in this course that they were teaching because otherwise
it would be a whole nother year before they call it this chemo course.
So they let me in.
And while I was actually in that course learning to give chemo, still thinking I'm going to
be in the pediatric ICU for a while and then do nurse practitioner.
They said, oh, by the way, like we have a PRN position that's open if anybody's interested
because one of our nurses has moved.
And like at that time I was like, I could do that.
That would be great because this would work really well with meeting the nurse practitioner
school.
I'll have a PRN job instead of a full time job.
And it's office hours.
It's Monday through Friday, no weekends, no holidays.
It was wonderful.
So I was like, I can do that.
And then like when I got to St. Jude is when I actually like slowed down to think.
Like this is where I was always supposed to be.
This is what I said I wanted to do when I was a child.
Like how on earth, like all of these doors just opened and I went in these, like I took
these opportunities that led me back to right where I said I wanted to be when I was 10
years old.
And I really had no control over that.
Like I didn't, I wasn't seeing that.
I wasn't like actively pursuing.
Like this is what I wanted to do.
It's just all of these doors just so happened to open up at the right time for me to end
up right back where I feel like I was supposed to be all along.
Yeah.
And it sounds like internally, I mean, when you were in that initial, what is it?
Medical meds surge you said, you could, it sounded like you could physically feel like
this isn't where I'm supposed to be.
Oh, exactly.
It was miserable.
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What did it feel like transitioning from Med Search to pediatrics?
How did you physically react to that?
I guess I like physically I loved my job.
I wanted to go to work like when I was in Med Search, I dreaded going to work every
single night.
And then when I started pediatrics, I loved going to work like I enjoyed it.
I looked forward to it and was like, what do I get to do today?
I get to see all of these kids.
And like at that time I was in a tech position because I was still in nursing school.
So I wasn't an RN yet, but I got to like, I got to play with the kids.
I got to take care of them, but I also got to play with them and like try to make their
hospital stay somewhat enjoyable because nobody likes staying in a hospital, you know?
And so that is kind of like what sparked my love for like where I ended up is like I really
I love like playing with the kids and trying to make their hospital stay somewhat enjoyable,
somewhat better than it was like try to make the best out of this situation.
And so like I loved going to work.
It was a complete completely different feeling than when I was at Med Search.
Yeah, I don't know why, but when you describe that, what I kind of see like I like the metaphors,
right?
It sounds like, okay, you're in this dark space.
Like let's put a few stars out.
Let's brighten up that night sky.
Let's make this time as enjoyable as possible with the circumstances that we're facing at
the moment.
Yeah, exactly.
Yeah.
Okay.
And then and again, I mean, I know just a little bit of your story from this, like falling
into where you're at now with Chad Tuff, DIPG, like how did that because it sounds like it's
this is the position for you again on steroids.
Like yeah, it just keeps it just kind of keeps getting better on accident.
So like how did you get involved with what is Chad Tuff?
Like can you kind of explain that transition to?
Yeah, so I actually I worked at St. Jude, the affiliate clinic there in Huntsville for
six years and it wasn't until toward the end of my six years there that we had started
that was COVID had yet.
We had gotten extremely busy.
We were completely overrun and understaffed and the restrictions on the hospital made
it that much harder for us.
And then like they were changing what they wanted us to do as far as nurse practitioners.
And what they were like wanting out of us, I felt like was putting my license on the
line.
So I wasn't comfortable treating the patients the way that they wanted us to treat them
within Huntsville Hospital.
And they were really looking at it from a money standpoint.
And I was looking at it like I'm here to try to help treat these people and try to help
these families and kids get through this horrible diagnosis.
And so I wasn't enjoying my job anymore.
I didn't get to talk with the families and learn how I could help them.
I didn't get to play with the kids and try to make their visit enjoyable to make it better
so that they didn't realize just how sick they were.
All of that had been taken away and they really wanted me to pump in patients as quick as
I can, get in there, get out, no extra talking, nothing.
And so I was like, this is not what I went into this for.
This is not why I went into pediatric oncology.
So actually I started looking for a job and I knew I was like, I'm not going to leave
for just anything.
So I got on there, I was looking, I had been looking like on Indeed and all of the job
sites.
And one day, like I had been looking for months.
I was like, I want to do pediatric oncology.
I want to find something in pediatric oncology.
So I stuck to that and one day, literally probably six months after I had started looking,
this job opening, it popped up and it was for this foundation out of Michigan.
And I knew like from the job posting, it said DIPG.
So I knew just from my prior oncology experience, DIPG patients, it's terminal.
It's 100% fatal.
No one survives this.
And so I really like, I took a step back and I was like, this is pediatric oncology and
it's working for homes.
I was like, that sounds like a really good perk.
But I thought like, am I okay with all of my patients dying?
Like I know going into this, every single one of my patients will die.
And am I okay with that?
Like do I think I can handle that?
So actually I didn't apply immediately.
I kept looking and several days later, I actually, it popped back up and I went back to it.
Like after self-evaluation, I was like, you know, this is what I went into pediatric oncology
for.
Like I went in and my passion is to help make the lives of people who are going through
the absolute worst thing in their life a little bit better.
And this would be the perfect opportunity for that.
For one, I get to work from home.
So that is a perk.
But in reality, like my whole job now is just to try to make these people's lives better
when they are going through the worst time of their life.
They are in the worst circumstances.
And so that's why I actually, I was like, no, what?
Like let's apply for it.
So I applied for it.
And sure enough, like they called me back.
There were several times, like when I talked to them back and forth, I was like, I don't
know if this is going to work.
Like to begin with, like the program had actually not started at the time.
They were actually looking to start this program.
It had actually not started at the time.
So it was very kind of iffy.
I was like, I don't know if this is a stable job.
Do I want to do this?
At the time they didn't offer insurance and anything like that.
I was like, well, I can't go without insurance.
So if you're not going to offer insurance, like I can't do this.
So there were several questionable times.
I was like, I don't know if this is going to pan out.
But then I ended up that like everything worked out, everything aligned.
And I was like, yeah, let's do this.
Let's take this job.
And so that's really how I ended up with this program.
So the Chad Tough Defeat DIPG program is actually two foundations of families whose sons went
through DIPG at roughly the same time.
One is from Ann Arbor, Michigan, and the other is from Bethesda, Maryland.
They're just outside of D.C.
So they were two families who were going through DIPG at the same time with their sons who
were roughly the same age.
And that's kind of how they got connected.
The DIPG community is very small.
DIPG is extremely rare.
There's only roughly 300 children diagnosed each year in the U.S.
So there's not there's not a lot of it.
So that community is very small.
That's how they got connected.
In 2021, they decided they wanted to combine their foundations.
So that is what the Chad Tough Defeat DIPG Foundation, how it came to be.
They also they had family partners.
It's called family partners who have also had children who have had had DIPG who have
passed away.
These family partners, they all they have foundations of their own and they raise money
for DIPG research.
And that was what Chad Tough was really based around was they fund research for DIPG.
They got together and they said, you know, like one thing we wish we had when we were
going through our journey with DIPG was somebody like from that had a medical background that
can explain this stuff to us, because clinical trials are like a foreign language and understanding
all of these medical terms that are being thrown at you when you're not you don't have
a medical background.
It's very hard to understand and it's hard to understand like how the clinical trial
work and when they accept patients and why they are like no longer accepting patients.
Like they have different periods of time when they can accept them.
And there's all of this criteria that you have to be eligible for to actually qualify
for the clinical trial.
And I wish they had someone who could help like explain symptoms, you know, like my
child woke up and they're vomiting.
Like what do I do with this and just different things like that.
They said they wanted someone who had a medical background.
So they developed this idea of a nurse navigator program who really specializes just with pediatric
oncology and DIPG.
And so that is how like they develop this program.
And so I was in on the initial hire of a nurse to help with this navigation process.
And because of my experience at St. Jude and what I had done previously, they said this
is perfect.
Like you're perfect for this job.
And so that's how I ended up there.
It's so crazy.
And then we actually like we started the program when we developed the program, we brainstormed,
we wrote the website, like we went through every single detail of DIPG and tried to explain
it.
So we have a massive website that we actually wrote.
We developed the standard protocols for what we're going to do like when we hire nurses
in the future, like how are we going to train them?
What do we think they need to know?
Like just is really like from the ground developed this whole entire program.
And now we have actually May 12th will be two years that our program has actually been
live where we've been accepting patients and working with patients and families.
And just this month, we have reached our 300 patients that we are working with.
So in less than two years, we have already reached over 300 families that we have been
working with to help navigate this disease and understand like what is going on with
their child.
So it really is.
It's so crazy.
I was going to say I'm looking at the website right now and one, it's fantastic.
Two, like you're right on the front page, which is so funny to see that it's like, wow,
like that's the person making it happen, right?
And 300 families, 40 states, 36 countries, like it's just insane the reach that you guys
have.
And what I think is so interesting there is it sounds like, again, like you're just kind
of like all these doors are opening and you're just kind of falling into these different
aspects and what Chad Tufts started at, you know, funding research, like kind of more,
what is it, like the hands off approach almost like we're still very much in it.
And now it's like, okay, now we have this team of nurse navigators, which now makes
a lot more sense on what that means that are like kind of like the boots on the ground,
like interacting with families, making it happen.
So that's incredible.
And it's really amazing because like in this past year, Chad Tufts was actually the largest
funder of DIPG research in the U.S.
So like they have taken this small foundation that they developed and now like Chad Tufts
donated over $6 million that they raised for just strictly for DIPG research last year.
That is incredible.
Geez.
What?
I mean, I don't know if there's like, I don't know how many other DIPG foundations there
are, but like what do you think's led to the success of like that level of success with
Chad Tufts?
They actually, so they get out there and they try to make, they try to make everyone aware
because it is so rare.
There's so many people like when I say I work with DIPG, they're like, okay, what is that?
You know, like I have zero idea of what DIPG is.
And so they just, they do a lot of work getting out and telling their stories.
And it's really like the founders and the families that are within our program across
the country, they are getting out there and they're saying like, hey, you, I'm sure you
probably never heard of this, but like, let me tell you what this is.
Let me tell you how terrible this disease is and how there has been no research for
it.
There's no change in the standard of care for the DIPG since the sixties.
Like there's just, there's not funding for it.
The government doesn't recognize it as like something as important to fund.
And it's not like it gets put on the back burner kind of like behind like pediatric
leukemia where there's been leaps and bounds of, you know, changes and research and treatment.
And now there is like, you know, leukemia is at a 96% cure rate.
And with DIPG, there's not, there just hasn't been the research behind it to like try to
figure out how to treat this.
And so that's what they do.
Like they put a lot of work into just getting out there and making everyone aware that this
is a problem and it can happen to anyone.
So actually one of our founding families, the one that's from Ann Arbor, Michigan, they
are somewhat like Michigan royalty.
So the Cars, Chad Carr is the Chad Tough child.
The Cars, his grandfather was one of the Michigan head coaches for football that led them to
like, I don't know, a national championship maybe.
He was, he was kind of like the Bear Bryant of Alabama, like with Tuscaloosa.
Like he is one of the most well-respected coaches within Michigan university for football.
And so like they had a lot of reach just being the Carr family because it was Lloyd Carr's
grandson who was diagnosed.
So they had a lot of pull with that.
And like it's, DIPG doesn't discriminate, you know, like you've got those people who
have great connections and then you also have those who have no connections, who have no
money.
Like we have children who are living out of hotels because they're just in either in terrible
situations, you know, like it just, it doesn't discriminate at all.
So that's kind of like what their push is like, this could happen to you.
It could happen to anyone.
And it's devastating.
And it sounds like it's, it's not a very common diagnosis.
So is that kind of what's leading to it not being well known or well funded like compared
to other types of cancers?
Yeah, absolutely.
Because it is so rare that they feel like it's not worth putting a lot of money into
because it doesn't happen that often.
Like they would rather put their money into like leukemia, which is very common or like
lymphoma, which is also a very common pediatric oncology diagnosis.
Like you can see, you get more bang for your buck.
Like you can see where your money's going and how your money is making a difference
there.
Whereas with DIPG, it's not like that.
It's so rare.
You just don't, it's extremely hard to treat because it is in the middle of the brainstem
is typically where this tumor is located.
It's very hard to get any medications to that particular place without also like affecting
the other brain tissue like that.
It controls everything in your body.
It's the very, a very sensitive place where it is at and actually getting drugs to it.
It just, it requires a lot of research.
And so like now there are researchers across the country online that we have helped fund
where they're looking at like, okay, how can we treat this?
How do we do this?
How can we get medication in there?
Like we get this medication in there.
Does that work?
Is that helping to treat this tumor and things like that.
So like in the past, I would say five to 10 years, the DIPG landscape has changed tremendously.
There have been leaps and bounds of clinical trials opening up for patients.
And we actually have a handful of kids who are one and two years out.
We actually have a couple who are five years out from diagnosis, which is just completely
unheard of because the average prognosis time for this disease is nine to 11 months.
So usually like from the time you're diagnosed, you typically have about nine to 11 months
to live and then you're gone.
And I guess to kind of like kind of wrap up that conversation with like you mentioned
earlier that, I mean, that's tough.
That sounds like something that of course for the families, for all those involved,
but for like you and your fellow like nurse navigators to kind of, I guess, see that and
experience that almost daily, monthly week, whatever.
What do you guys do to kind of handle all of that heaviness, I guess, if that makes
sense?
It is.
It's very, very hard.
And that is one of the reasons why I didn't apply for the job initially, because I was
like, can I handle this?
Am I OK with every single one of my patients passing away?
And I think like how we handle it is like we go into it knowing what the outcome is
going to be.
We hope for those like, yes, we hope your child makes it one and two years and five
years and we hope we see more of that.
But in reality, like we are very aware of this is what's going to happen, like this
is what the outcome is going to be.
This child is going to pass away and typically pretty quickly.
So it's one of those things like when you go in with that mindset, knowing that this
is what's going to happen, it allows you to like handle those emotions and that attachment
in a different way.
You still get attached to your patients and you still get attached to your family and
you feel that deeply when one of them passes away.
But I think like for me, just from my perspective, like just knowing prior to going into it,
what this outcome is going to be, it makes it easier for me to cope with that, like to
cope with losing every single patient.
And it sounds like there's a couple aspects of that, like being very aware of the situation
that they're in, knowing what that ultimate outcome is.
And it sounds like just being very connected to that purpose and that mission that you
have for yourself of kind of like being a light, shining it as brightly as possible
so that they can, I don't know, again, like really just focus on what's most important
at that time, which is trying to get better, trying to focus on their family, et cetera,
and being that beacon for them essentially.
Yeah.
And that is ultimately like why I ended up going back and applying for the job is because
like this is my passion.
This is what I want to do.
And so like having that passion for this and knowing, you know, being aware of like what
the outcome is going to be, it makes it worth it.
Like, it's not saying that there's not hard days.
There are hard days, but it makes it worth it in the grand scheme of things.
Like if I can ease their burden in some way, then I have done my job.
You know, when I have gotten that satisfaction, my self satisfaction of being able to help
them while also like easing some of their pain and burden.
For sure.
Well, Ashley, I mean, that definitely shines through.
I mean, gosh, it sounds like the universe, God, whatever, like you was placed here perfectly
and just opened up all those doors so that you can kind of share that magic and light
with other people.
So I definitely want to acknowledge you for that, because I think that's incredible that
just the openness that you've had to all those opportunities and like positioning yourself
in a way that when the doors open, you could just kind of walk right through.
Yeah.
It is so crazy.
It was really almost like it was completely out of my control.
Yeah.
Because I mean, honestly, like I would not.
I don't feel like if I had really stuck to my guns and went the engineering route, that
I would have this satisfaction that I have in life.
You know, like I don't feel like I would be able to make the difference that I'm making
now if I had really actually stuck with engineering.
And that's what I wanted to do.
I really had to be open to all the opportunities that just fell in my lap, essentially.
Yeah, that's amazing.
But no, Ashley, thank you so much for sharing the story and helping bring more awareness
to DIPG and what Chad Tuff does with the foundation and the work you guys are doing.
If folks wanted to learn more about Chad Tuff, they want to donate, want to help out or volunteer,
where can they find you guys on the Internet?
So we actually have two websites.
The foundation is ChadTuff.org.
That tells really about the foundation and more about the research funding side of our
program.
The program that we developed is called My DIPG Navigator.
And that is the portion where we are actually helping the families.
That is MyDIPGNavigator.org.
So you can learn about both Chad Tuff and the My DIPG Navigator program within both
of those.
I would say more of like if anyone is interested in donating, that would be more along the
Chad Tuff side of things.
And then you can kind of delineate where you want the money to go to.
Like if you want it to go more toward research for DIPG or if you would rather it go more
toward funding for our program.
I guess one thing to mention too that is like significant about our program is it's free
of charge for families.
So the families that are going through this, they do not pay for our service at all.
We are funded as nurses strictly through the donations of the families who have gone through
this in the past who said we wish we had this.
So our program, the DIPG Navigator runs strictly off of donations.
So it would be greatly appreciated for donations with that.
And it's just to give this service to families so that they don't have to pay for it.
That's amazing.
That's again, that's so great to know that there are people.
And I think that's the whole thing with the walk, right?
That there's problems in the world.
There's things that are out of our control and our control, whatever.
But despite all the terrible things, like there's people out there that are a light,
that are a beacon, that are saying, hey, this thing is terrible.
But what can we do to make it better?
And I think that Chad Tuff and DIPG Navigator are one of those things.
So thank you for doing what you do.
I'll put all the info in the show notes for DIPG Navigator, Chad Tuff, and also the social
media links, Facebook, Instagram, LinkedIn, it looks like, YouTube maybe too.
But yeah, Ashley, thank you so much for hanging out with us today.
Thank you so much for having me.
Of course.
I had such a great time interacting with Ashley and having her on the podcast.
I really think that the folks over at the Chad Tuff Foundation are doing some amazing
work.
What I really take away from my conversation with Ashley is something that we've kind of
talked about before with how important it is to be open to opportunity and possibility.
Like she said, things just kind of kept falling in her lap, but that's only because she was
putting in the work day in and day out.
It didn't just happen necessarily, but the doors opened and she was able to walk right
through, which again, just putting herself in opportunities way so that when it comes
up, she's able to take advantage of it.
Again, if you'd like to learn more about the Chad Tuff Foundation and the amazing work
they're doing over there, everything's down in the show notes, their Instagram, Facebook,
website, everything that you would need to learn more, donate and follow along on their
journey to help folks focus on what is most important in a time of need.
As always, we'll see you guys next week and remember to have fun, stay safe and be yourself.
See you guys then.
Bye now.