September 26, 2023 • 38 mins
Enrique’s 3-year-old daughter Arianna was diagnosed with an incredibly rare brain cancer and they were told that she would never turn 4. Arianna was then accepted as a patient by St. Jude, the leading childhood cancer hospital where families don’t pay a dime, and they gave her an additional 4 years of life. Enrique is so grateful to St. Jude that he’s now working for their awareness and fundraising organization.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Hey, everybody, it's Bill Courtney with an army of normal folks.
And we continue with part two of our conversation with
Enrique right after these brief messages from our generous sponsors.
Speaker 2 (00:27):
I truly believe had we not came to Saint Jude,
we wouldn't have anything past that date. You know, Ariana
came here. We got here August second, two thousand and nine.
She had a second brain surgery August tenth, and then
she started treatment. She had four months or she had
thirty one radiation treatments. She had a month break, four
(00:47):
months of high dose chemotherapy with stem cell Transplantee.
Speaker 1 (00:51):
Assume this is after removing the tumor.
Speaker 2 (00:54):
Yeah, and so you know, fast forward, she does her
treatment radiation treatments for high dose chemotherapies March thirty, first
of twenty ten.
Speaker 1 (01:05):
I'm sorry, what does you said? High dose chemotherapy? What
does that do to a three year old?
Speaker 2 (01:13):
It's tough, bet, it was seven days.
Speaker 1 (01:16):
What you need? You know? The problem is we get
desensitized to the word chemotherapy. We are so used to
people having cancer and hearing about radiation and chemotherapy, and
let's face it, people live and die with cancer all day,
every day around our world. And we've got brans cancer
awareness and all this other stuff, which is great. But
(01:40):
the problem is, I think we talk about it so
routinely we get desensitized to just how devastating it is.
And so I'm thinking about a three year old taking
what you're calling high dose chemotherapy. I don't want to
get to grow. And I wondered, brother, I would do
(02:04):
nothing but honor your daughter's life. But tell us what
that looks like and feels like from a parent's point
of view.
Speaker 2 (02:14):
Uh, I mean, it's it's tough. You know, it's your
your three year old, and she's lost weight. You know,
you don't see it at the moment. I think it's
crazy now for us to like look back at pictures
and see like how skinny she truly was. But you know,
her treatment was again, it was the high dose chemo.
Was her getting slammed with different a cocktail of different
(02:37):
chemo therapies for five days straight here in the Chili'scare Center,
and she'd get a day break and then the seventh
day they'd give her her stem cells back because you
had to resuscitate her body. And that was the only
way to do it. But I mean the chemo was
so toxic that anytime we were around her, we always
(02:59):
had to work her gloves. I mean when she peeded,
it burned her. When she peeded, it.
Speaker 1 (03:07):
Was which means she was crying and she was in pain. Yeah,
and you can't even touch your child with your bare hands.
Speaker 2 (03:17):
No, you're not supposed to. But you know, as a
parent you don't care.
Speaker 1 (03:21):
But still, Yeah, the point is, I mean we hear, Okay,
how does chemotherapy. We're talking about a three year old
child who's in pain, sad, scared, burns when she peas,
and parents just pleading for their daughter to recover. It's
(03:46):
it's horrific.
Speaker 2 (03:47):
Yeah, but you know, she goes through the treatment and
March thirty, first of twenty ten, she's declared cancer free,
which was something we never expected to hear. Cancer free,
(04:08):
cancer free.
Speaker 1 (04:09):
Literally it's out of her body.
Speaker 2 (04:11):
She's beat it. So now we're moving.
Speaker 1 (04:14):
To and she's four now or almos about.
Speaker 2 (04:17):
To be four. So she turns. For a week after
April eighth, we were on her make a.
Speaker 1 (04:22):
Wish pretty nice birthday present.
Speaker 2 (04:24):
For her fourth birthday, we were on her make a
wish trip at Disney World, and that was the goal
right through treatment. That was the goal to get her
to her make a wish on her birthday so she
could go to Disney. She wanted to spend her birthday
at Cinderella's Castle. That's what she would always say. And so, yeah,
(04:44):
so she beats it. We try and get our life
back on track, back to normal. You know, I go
back to work in the Navy. In the Navy, we
stayed here and I didn't have to worry about anything,
and even the Millington base they gave me that year
off anyway, So I got a whole year off to
just worry about Ariana. I didn't go back to work
to after her make a wish. And but anyway, so
(05:07):
Ariana's cancer free March three, first, twenty ten, we go
on her make a wish. Unfortunately, in July of twenty
and eleven is when the relapse comes. So if the diagnose,
if the prognosis and the diagnosis was grim the first
time around, it's even worse the second time around. So
at that point, now we're looking at the possibility as
(05:29):
that it's a genetic disposition and she can't fight off
that cancer. So now even here at Saint Jude, we're
looking at how can we extend her life best with
doctor Gajar, now we're sitting and talking how can we
extend her life? So this is in July twenty and eleven,
and even doctor Gajar tells us like, hey, you know,
(05:50):
I'm not sure she'll be here for the holidays, Like
we need to do you guys need to do everything
you can with her while you have her. So December
comes in, rolls, you know, comes and goes. February rolls around.
Now she's two months past this expiration date that we've set,
(06:10):
and doctor Gajar comes to us and says, hey, I
have this experimental Kimo that we can try. Mariana will
be the first ATRT patient at Saint Jude to receive it.
So we give it to her and it shrinks to
tumor by ninety percent, which is not something that we
(06:31):
at all expected. She's still not curable. It's still you know,
it's still now we're still playing the extension game. But
now we've bought her even more time. Right, and Ariana,
again she's the first ATRT patient to receive it, and
thanks to this drug, we got an extra three years
(06:52):
from that date. From that relapse date, Soriana did not
pass away till March of twenty fourteen, two weeks shy
of her eighth birthday. And thanks to donors and supporters
like you, there was so many different things afforded to us,
Like we were able to figure out while we were
moving from Japan where we were going to live, which
was at the Target house until we bought a house
(07:15):
and we were fed. My other daughter was taken care
of because we didn't have to worry about anything during
treatment those five years. Anytime Ariana felt well enough, we
always asked her, like, what do you want to do?
You want to go to a Passo Phoenix or you
want to go to Disney World. And because because we
didn't have to pay for treatment or to go to
(07:35):
Disney World, so Ariana passed away again two weeks shy
of eight. She had been to a Disney park thirteen times. Wow,
so she had been to Disney. My wife and I
were talking about this last night. So she had been
a Disney World in Orlando nine times, and she had
been to Tokyo Disney three times and then the Anaheim
Disney ones. So Ariana and Olivia have been to Disney
(07:59):
Disney more than your average adult. Right, so.
Speaker 1 (08:07):
You're still in the Navy and now you work for
Saint Jude. How about happen?
Speaker 2 (08:17):
So when arian I'm passed in twenty fourteen, I don't know,
it's hard to tell it. I mean, if you walk
around the campus and meet families, it's really weird how
Saint Jude draws everybody in. It's a stop for a
second on that.
Speaker 1 (08:33):
It's really weird how Saint Jude draws people in here.
We talked about when you were in San Antonio, and
I ask, you know, besides the prognosis and everything, you know,
the family's sick, the kids sick physically, but the families
(08:55):
emotionally sick. You know, they're sick to their stomachs, are sad.
And you know it dawns on me walking through this
campus that this place heals families too. Because of what
you just said. Explain that how quote this place draws
people in.
Speaker 2 (09:17):
I think, I mean, I think you touched on it earlier.
It's the sense of community that you have here. Right, So,
when I was telling you about Ariana's diagnosis, you said
you didn't have a community to lean on. We didn't
find that community till we got to Saint Jude. And
you know, because now here you have other families that
are being treated for ATRT or brain tumors. Right, So
(09:41):
now you're meeting people and you're understanding what they're going
through and what you're going through, and there's people that
you can communicate on the same level with. And now
you have a treatment team that is doing everything possible
for you and your kid. You know, those the first
two weeks here. I remember when we first got here, Uh,
(10:04):
my wife would walk around because you're stressed out, and
I can I can walk through that hospital right now
and point out who the new families are, right because
you see it in their face. And I just remember thinking,
like me and my wife would joke around and we'd say, dude,
they're spraying prozac through these vents, because like, why is
everyone laughing and why is everyone smiling? Why are these
(10:25):
kids having a good time?
Speaker 1 (10:26):
There's kids dying around here. Why is everybody so happy?
Speaker 2 (10:29):
Exactly? And you don't understand that and until you become
a Saint Jude family because and the reason that is
is because every other stress and burden is lifted off
your back. The only thing that you have to worry
about is keeping a smile on your kid's face. Right,
they're treating her, and they're paying for you, and they're
(10:53):
treating her, and they're giving they're even giving you extra
money for you to worry about your housing and your food.
So there is other than the fact that your kid
has cancer. There is nothing else that you're having to
worry about but that, you know.
Speaker 1 (11:09):
The antithesis to what you said is you said, I
can walk around here and I can tell the new
families immediately about the look on their face. I bet
you can also walk around here and tell the families
who have had the Saint Jude experience also by the
look on their face. That's kind of beautiful. Yeah, that
(11:30):
this place is treating the whole family and you experience that.
We'll be right back. So how come you work here?
(11:56):
What happened? How the Navy becomes Saint Jude for you?
Speaker 2 (12:00):
So we used to do a lot of speaking opportunities
that they would, you know, like this, They would invite
us to share our story, and Ariana was so I
worked on the Patient Family Outreach Team for a long time,
which is the team at Alsack. Alsack is the fundraising
an awareness organization for Saint Jude. So the Patient Family
(12:22):
Outreach Team is the team that goes into the hospital
and finds the families that want to share their stories.
So we used to share stories all the time. That
that was my actual job at ALSACK, But before that,
I was always tied in with that team sharing our
story got it. So what ended up happening is Ariana.
(12:44):
And again I was saying that that I was part
of the Patient Family Outreach Team because I didn't realize.
You don't realize how hard it is to find families
that one are willing to share their story comfortably. Two
you got to have the kids that are willing. And
then ourriana was our family was military, so we you know,
we can tell the story in many different ways. And
(13:06):
I'm bilingual, so that's hard to find and Ariana was
one of those. So Ariana was being asked to do
a lot of different things, Spanish commercials, commercials that are
targeted towards military, you know, things like that. So we
were always sharing our story. And one time I was
at a dinner with mister Shadiac was the CEO of ELSAC,
(13:30):
and he told me right before it was right before
Ariana relapsed. I remember he told me, He's like, hey,
why don't you come work over here? So this is
twenty eleven, and I was like, you know, at that time,
I was a lifer for the Navy. I wanted to
do my twenty.
Speaker 1 (13:46):
Retire get your retirement, yeah.
Speaker 2 (13:48):
And then just like buy a farm somewhere in a
toka and chill out.
Speaker 1 (13:52):
And maybe your kids would ask you out to party
with them one day.
Speaker 2 (13:56):
One day.
Speaker 1 (13:57):
You know, it's a generational thing.
Speaker 2 (13:58):
Possibly help him fail out of school. So he Yeah,
in twenty eleven, he put this crazy idea in my
head like, hey, maybe you should come work over here.
And I didn't want to. And you know, as I
told you, I failed out of school twice. I was
in a school guy. I joined the military because the
school was just not for me. But it did get
(14:20):
me thinking in twenty and eleven, like what am I
gonna do when all this is over, like the Navy,
Like what I don't want to keep working for the government.
So I registered myself for school June of two thousand
and eleven. What school online? It was like Colorado University,
what kind of school? So I signed up for my
associates just to get like so you had to have that.
(14:42):
It was just it got me thinking for life after
the Navy got it.
Speaker 1 (14:46):
So you're thinking, when Navy's over, I need to have
something to fall So you went ahead and said, I'm
gonna do an online associatestory.
Speaker 2 (14:52):
Right because every ALSAC job that you look at, the
majority of them require a degree. So I knew that
I was going to need something if this is what
I wanted to do. So in June of twenty eleven,
I registered to get my associates. Ariana relapses in July
twenty eleven. So but now I'm on the military's dime,
so I can't pull out of school or I gotta
(15:14):
pay for it, and I can't fail out, so I
keep going. I get my associates all while Ariana's getting treatment,
and I'm like, sain't that bad? So I continue doing it.
I get my bachelor's, I get a.
Speaker 1 (15:27):
That's not bad.
Speaker 2 (15:29):
Yeah, I get a business degree into my bachelor's in
marketing and International business. And this is in the middle
of Ariana's treatment. I think I have finals the week
that she dies. Yes, because I graduated in May. She
(15:50):
passed away in March, and I remember I had finals,
got my bachelor's and then now I have a here
a year and a half left in the Navy, so
I'm like, I might as well just go for my masters.
It's only a year and a half program. So now
I'm thinking, like the Navy's paying for this, right, So
I get my master's. I get a master's in marketing,
(16:13):
and now I feel like I can come work at
ALSAC and I feel like I earned it. Right. It
wasn't just because mister shadyact the CEO, told me to
come get a job here. It was because now I
prepared right. Not only are we a Saint Jude family
and I can understand that scope, but I've put myself
(16:34):
through school and now now I feel like I belong
here because everyone else had to do what I did.
Speaker 1 (16:40):
Right. Sure, Dad's so often, Yeah he's so proud. He
got it.
Speaker 2 (16:47):
He is, but he can't like get it out without crying.
It's hard.
Speaker 1 (16:51):
I love that man. That's great he is. And uh,
I mean he sent you off to ASU and he
partied like was nineteen ninety nine and came home and
was sleeping until noon. And now you've got a master's
and are working at the premier children's research hospital in
the world. And you know what, that's Arianna's legacy.
Speaker 2 (17:12):
It is so now I can't roll her out here
and tell you that she's junior or senior in high school.
But Ariana's legacy lives on through whatever it is that
I do at Saint Jude, right giving tours and sharing
our story.
Speaker 1 (17:32):
Let's talk about that community a little bit. I've read something.
You got to forgive me because I'm not the greatest
not taker in the world, but your family became close
family friends to another family with another child being treated
and I think his leg had to be removed.
Speaker 2 (17:52):
And Markel, what Markel, Markel.
Speaker 1 (17:57):
Tell us about what you did with Markell before that
happened the night before. I love that story.
Speaker 2 (18:07):
Yeah, so with Markel, Ariana was still alive during this time.
So again, this is when I'm going to school for
my bachelor's and I'm.
Speaker 1 (18:15):
Still But it's about the community, right, Yeah, it is.
You wouldn't know Markel and your families. I don't know
if you came from the same place or not, but
there's this connection through this thing your families are going
through called cancer, and your children and your children become
friends as a result of in your families and all
of that. That's part of the community, part of the
(18:36):
healing process for everyone. Right.
Speaker 2 (18:39):
Yeah. During that time, you know we met Markel, I
was in school, so I was juggling school, Ariana's treatment,
and the Navy, like I was doing all three and
then still maintaining a household. Right, it's all four. But
I remember it was finals week and Markel is they're
(19:03):
staying at Tri Delta, which was the Grizzly House back then.
But he's staying at the Tri Delta House about to
have surgery the next day to amputate his leg. And
I remember he calls me how old Markel had to
have been, like twelve or thirteen.
Speaker 1 (19:22):
Again, we hear the world childhood cancer, and I feel
like we drive past it like it's a fender bender
because we're just used to hearing it. A twelve year
old kid, Hey, we're going to have to amputate your leg.
Speaker 2 (19:38):
Yeah, And I remember, I remember he called me and
he's like, what you doing, man, I'm like, nothing, dude,
just sitting here doing homework, you know, And he's like
he's all, hey, you know, I used to always come
get him and take him to Popeyes. He used to
love Popeyes, Like and Popeyes coincidentally was all the way
by my house.
Speaker 1 (19:55):
It's only because Popeyes is the best chicken on earth.
Speaker 2 (20:00):
Well schof that conversation.
Speaker 1 (20:02):
But and Coachy Corner has a great barbecue and Popeye's
chicken spicy chicken chicken breast with the mashed potatoes and gravy,
and their their they're spicy coldslaw man. They have the
best pepper on something.
Speaker 2 (20:16):
What they do have the best Hall of Baniel peppers.
Speaker 1 (20:18):
In town Jlopena peppers.
Speaker 2 (20:20):
Yeah, they're crunched chicken. They're crunching.
Speaker 1 (20:23):
Take that stuff back to a passo, bro, we're talking
about chicken right now.
Speaker 2 (20:27):
They're good for a chain. Yes, they're fantastic. And you
used to take them to pop So I used to
always pick them up like I was basically a zuber
at that time. And you know, he he I had
the thirteen year old best friend at that time. It
was like, I want to go to a Grizz game.
I would take him to Grizz game and he uh so, yeah,
he calls me after their appointment and he's like, hey,
(20:48):
do what you're doing? You know I'm I'm sitting here
doing homework, you know, I'm slammed with homework. And he's like, hey,
we we come, come get me. And I'm like, he's
a dude. He's like, I just want to play basketball.
Speaker 1 (21:00):
He's like, pulled it. You can't you stop? Pause? What
are you thinking when you hear that? Dude, You've got
to take your breath away?
Speaker 2 (21:09):
Yeah, I mean, you drop what you're doing and you
won't play basketball.
Speaker 1 (21:12):
I get that part. I'm talking about what you feel.
Speaker 2 (21:16):
I mean, it feels like a gut punch. Even now
talking about him. It's hard not to get emotional or
just feel that pit in your stomach. You know, he's
a twelve year old kid, little teenager. So how long
did you play basketball till the sun went down? I
mean as long as Yeah, I mean the basketball court
is still there. It's the court next to the Tri
(21:37):
Delta house. We just sat out there and played one
on one and shot.
Speaker 1 (21:41):
What was his cancer?
Speaker 2 (21:43):
He had all steel sarcoma.
Speaker 1 (21:45):
What does that mean?
Speaker 2 (21:46):
It's a cancer of the bones. But you know, again,
the whole community thing, I mean, where was he from Louisiana.
Speaker 1 (21:56):
And his mom was here with him? I guess his mom.
Speaker 2 (21:58):
Works here, not to is what his mom works here
now to you might want on your podcast?
Speaker 1 (22:03):
Are you kidding me?
Speaker 2 (22:04):
I'm not. She's right upstairs.
Speaker 1 (22:07):
Did he make it? He did not? How old was he?
Speaker 2 (22:11):
He passed away when he was seventeen or eighteen?
Speaker 1 (22:16):
Yeah, but his life was much longer given us time
here and you got to play basketball with his buddy. Yeah.
Speaker 2 (22:24):
Markel was you know, just talking about community. It's I
think everything I do, I carry so many of these
names that we met along the way, right, Markel being one.
I mean, I have him tattooed on my arm. He
Markel was just a kid that was larger than life.
(22:45):
You know, he was an amazing kid, you know, talking
about that moment, right, And I think all Saint Jude's
all all Saint Jude kids carry that at them. It's
like they can carry the worst news possible and take
it in stride. And it's because of the people they're
(23:06):
surrounded by and the treatment teams that they're surrounded by
that gives them that confidence. I feel like and hope
and hope and Markel was just he uh, I mean
I loved hanging out with him. He was, like I said,
he'd call me and be like, dude, I want some Popeyes,
and I'd have to come kid him and take them
to Popeyes. And so I remember, so here's here's the
(23:28):
first time I met Markel. Okay, So the first time
we met Markel was in New York City. We were
there for the thanks and Giving celebration on the Today Show,
which I'm sure you've seen. It's it's the week of Thanksgiving.
They have a Saint Jude family on every week or
every day, right, So we happened to be there the
week that they were there. We were the two families
(23:49):
that were chosen. And I remember him walking around Times
Square and then we did our thing, and but we
ran up and saw each other at the hotel again
after he had walked around Times Square, and I was
like his mom like comes up to us and tells us.
He's like, dude, we ran into Tracy Morgan, you know,
and I was like that's cool, you know, and he's like, yeah,
(24:12):
he's super nice. He was like chatting with us, and
I was like cool. But Markel's, you know, a little
bit further away. So when Markel comes up, the first
thing I tell him like, dude, I heard you met
Tracy Morgan. He's like, I didn't meet Tracy Morgan. He's
like Tracy Morgan met me. And that was just the
kind of kid that Markel was, right, and uh, I mean,
(24:33):
he was just he was just.
Speaker 1 (24:34):
A great kid. And that's just one more example of
how Enrique is a member of the army of normal folks.
Here he is juggling a ton, his daughter's battling brain cancer,
he's going to college, he's a husband and a father,
and yet he makes the time to serve another kid
(24:56):
battling cancer. It's remarkable, and the service of others continues
after the break. I want you to share with us
(25:18):
the story of the eight acts of random kindness for
the eight years your your daughter was on this earth.
Tell me about that.
Speaker 2 (25:30):
Yeah, So, as I said, Ariana passed away two weeks
I have her eighth birthday. We got to we celebrated
her eighth birthday and one of the cool things was
so her we did her birthday party like the last
few days in March. We had a pinata for her
(25:50):
because she's Mexican. Uh so we had a pinata.
Speaker 1 (25:53):
I'm not Mexican. I had pinatas for my kids. Culture
you know, everybody likes pinatas.
Speaker 2 (26:01):
So we had a pinata for her.
Speaker 1 (26:04):
Mexican good grief whatever.
Speaker 2 (26:06):
Okay, go ahead, we'll explore this software. But she uh,
so we had a pinata for her. She ended up
not feeling well and she had to go lay down,
and so she essentially missed her eighth birthday party. So
us in our head, we saved a pinata for her
because it was for her. And I remember when she
(26:28):
woke up after the party, she looked at us and
the first thing she said was did y'all break the pinata?
And we were like, no, you know, we thought that
you should break it. It's your birthday. And she started
crying because she was upset that the kids didn't get
to break the pinata and have fun.
Speaker 1 (26:47):
Her friends didn't get to Yeah, and it's so sweet.
Speaker 2 (26:50):
So she was always like that. She was always thinking
about others, and even when she was in treatment at
the hospital, if she see kids not having a good
time or off in the corner by themselves not wanting
to play, she always she always tried to pull those
kids in. So she was always extremely kind and thoughtful.
So again, she passed away two weeks. I have her
(27:12):
eighth birthday, but we gave her eight. So when she
did pass March thirty first of twenty fourteen, we were
just in a whirlwind of emotions and not.
Speaker 1 (27:21):
Knowing what to do, completely understandable.
Speaker 2 (27:24):
You know, just kind of lost in our grief. We
didn't want to celebrate an eighth birthday on April eighth
because she wasn't here with us anymore. I mean, we
had just had her funeral. So we decided. My wife
and one of her best friends were just chatting through
things on what to do on her Ariana's birthday that
they came up with wanting to do eight random acts
(27:46):
of kindness on Ariana's birthday, one act for each year
that she lived that we had her, And now we
do that every year since that day.
Speaker 1 (27:56):
What do you do?
Speaker 2 (27:58):
We just go around and find people.
Speaker 1 (28:01):
Just not at Saint Jude, but anyway all over, yeah,
I mean, Walt wherever.
Speaker 2 (28:08):
I mean, We've put bags together for new families at
Target House. I've you know, paid for people's meals, you know,
taking homeless people food, clothes, anything we can think of.
We try and just spend.
Speaker 1 (28:23):
That literally really random kindness to just honor your daughter's legacy.
Speaker 2 (28:30):
Right, Yeah, we anywhere we spend that day just being
kind of people and telling people about Ariana. Not necessarily
being kind, but like we always have like a little
bookmark that we share with people and we see and
this is why we're this is why we're doing it,
and then it has like Ariana's little story. So but
(28:51):
we feel like this is something that we should do
because the first year, you know, I went to work
the ninth the next day and I was still in
the Navy, And on the drive home, my wife tells me,
She's like, hey, will you pick me up a Starbucks
drink or whatever? She gets teased. She doesn't get coffee,
(29:14):
she gets those fancy teas, but you know, she always
has text me the order because I don't remember what
it's like. You know, it's deead of water that you
got to use apple juice and blah blah blah. Right,
So I remember I remember the ninth. The ninth, I'm
driving home. This was after the first year that we
did that. I'm driving home and this is my military
(29:39):
cheap self thinking, right, there's a Starbucks right about my
house that if you're in uniform, they won't charge you.
So I'm like I'm stopping at that Starbucks. So anyway,
I pull up through the drive through and she's like, hey,
you know, you know, I'm trying to pay because I
always try and pay no matter what. So I'm trying
to pay and the lady's like, no, it's not it's
(30:02):
on the house. Uh, you know, we got it. And
and I'm like, you know, I'm like why and she's like, well,
she's uh. She's also I didn't work yesterday, but someone
came in and did an act of kindness and they
asked that we pay it forward. And here's a book
mark and it was for this little girl, Ariana. And
(30:24):
you know, this is why, this is why I'm doing it.
And I chose. I chose you. And I was like, well,
thank you so much, you know, and.
Speaker 1 (30:30):
Did you tell her? No, you did not even say
that's my daughter. But it came full circle.
Speaker 2 (30:37):
It came full soulker. I told my wife and she
broke down and cried. But I felt like a break
down a crowd. If I would have told that poor
little teenager she lost it, she would she would. I
don't think she would have been able to work.
Speaker 1 (30:47):
Did you not ball on the way home.
Speaker 2 (30:50):
I've always been really good at compartmentalizing everything that we've experienced.
I mean even now, people will always hey, like, I
don't understand how you don't get emotional talking about Ariana.
Speaker 1 (31:05):
Tears do not mean you're not emotional. It's where your emotion.
Speaker 2 (31:09):
Is put right. But okay, I guess I can contain
that really well.
Speaker 1 (31:15):
But but yeah, it had to have hit you in
your core. It did when the woman in Starbucks gives
you a coffee and hands you the bootmark and had
no idea and said here, and it's about your own daughter,
your daughter's legacy coming right back through a drive through
(31:36):
window a Starbucks and eating in the face.
Speaker 2 (31:38):
Yeah, I just thanked her, and you know, drove off
and called my wife immediately. It was, Uh, it made
us feel like that's what we needed to do every
year because that was the first year.
Speaker 1 (31:53):
So I don't know the exact statistics, and I know
you probably do, so correct me or help me. But
thirty years ago, if a child got cancer, one out
(32:16):
of five survived it about twenty percent. And now, because
of Saint Jude and the amazing research they do and
the experimental stuff they do, I think it's four out
of five it's about eighty percent. It helped me with
(32:37):
those numbers. Is that is that close to right? What
is it?
Speaker 2 (32:40):
So in nineteen sixty two when Saint Jude opened its doors.
Speaker 1 (32:43):
Okay, sixty two, so that's uh thirty eight fifty almost
sixty years now.
Speaker 2 (32:50):
So in nineteen sixty two when Danny Thomas started first fundraising,
if you look at if you go into the pavilion
and you look at pictures of like the original fundraiser
that Danny would would do, you see a lot of
them where they're talking about childhood leukemia. So his goal
at that point was childhood leukemia. Leukemia's survival rate in
(33:10):
nineteen sixty two was four percent. How much four percent?
Speaker 1 (33:14):
Four It was a it was a death.
Speaker 2 (33:16):
Since today, thanks to all the research and all the
treatments that Saint Juda has helped develop, thanks to donors
and supporters and all their donations, the survival rate for
child the most common form of childhood leukemia is ninety
four percent. So that's you know, it's night and day.
(33:36):
It's completely different than it was when Danny Thomas started this.
Speaker 1 (33:41):
Organization, and overall, not even just childhood leukemia, but all
kinds of.
Speaker 2 (33:48):
Cancers all right, eighty percent now.
Speaker 1 (33:50):
Eighty percent survival rate against an eighty percent death rate.
What's it feel like to be part of an organization
that is doing that for humanity?
Speaker 2 (34:09):
I mean, it's the most fulfilling job I've ever had.
It's uh, it's great to know that I don't know.
So the way I look at it is, I feel like,
like you said, right, just normal guys make make make
(34:31):
amazing organizations, right, And I think these normal guys are
impacted by something in their life. So a lot of
these foundations and a lot of these organizations are are
created and founded because something impacted that person. After what
(34:51):
we've been through with Ariana and everything that I learned
and everything that we experienced with Ariana, the way I
look at it is when it it's all said and
done for me, when I'm done being here, I want
I want my kids to know that I did everything
I possibly could learning from the experience that we lived
(35:13):
with Mariana, and I gave back to everything that gave
to us. So the way I look at it is,
I've dedicated my career to the organization that gave us
so much hope and so much care for my daughter
that gave us an extra five years that we went
(35:33):
to God elsewhere, and I will forever feel indebted to
Saint Jude for them.
Speaker 1 (35:44):
You know, our podcast is an army and normal folks,
and we talked to a lot of normal folks who
have started extraordinary organizations or become involved in extraordinary organizations.
And you know, your story is so fitting because you're
a normal guy, and you know your parents are blue
(36:08):
collar workers, and you find a way to get in
the Navy, and you get married, you have two kids,
and your life is on its way, and you're interrupted
by a devastating news for your daughter, and you continue
to serve in the military, and then you figure out
(36:29):
how to get your masters after failing twice in your
younger years, and now you end up working at the
very hospital that gave your daughter hope and kids from
families that are so much like yours. And I guess
(36:51):
if you're part of that end of Saint Jude, your
whole goal is to continue to tell the story of
Saint Jude and what it meant to your family and
families like yours, and why it isn't so important that
people across the world support this place.
Speaker 2 (37:10):
Yeah, I mean, it's a it's an amazing organization. And
you know, one of the one of the things I
always say when I get to speak at radiothons because
radiothons like they always shoot for like the twenty dollars
a month they partner and hope, right, And one of
the things I always say when they're like, what do
you have to tell our donors or our listeners? I
(37:35):
think twenty dollars a month is amazing to be able
to donate, right, It's not. It's not unattainable. It's easy.
That's three Starbucks cups a day.
Speaker 1 (37:44):
Right, It's a sixteen piece bucket at Pope's that's nineteen
ninety nine.
Speaker 2 (37:49):
Yeah, easy, right, easy, So you can do that, right,
you can. You can leave the bucket at Popeyes one
time a month and for twenty dollars a month. I mean,
you're ensuring that these doors stay open. So I look
at it more as an insurance policy, right, because you
never know when you're going to need a place like
Saint Jude. It might be for your kid, it might
(38:11):
be for your neighbor's kid, it might be for your
niece or your nephew. But one day someone that you
know or that that's touched your life is going to
need these doors to be open, and twenty dollars a
day insures or twenty dollars a month ensures that those
doors are open.
Speaker 1 (38:29):
So, guys, let's ensure Saint Jude's doors always stay open,
and together we could get one step closer to the
day when no child dies from cancer. Once again. If
you're interested in joining us in this mission, go to
Savejude dot org. Backslash normal folks, I'm Bill Courtney. I'll
see you next week.
Hey, everybody, it's Bill Courtney with an army of normal folks.
And we continue with part two of our conversation with
Enrique right after these brief messages from our generous sponsors.
Speaker 2 (00:27):
I truly believe had we not came to Saint Jude,
we wouldn't have anything past that date. You know, Ariana
came here. We got here August second, two thousand and nine.
She had a second brain surgery August tenth, and then
she started treatment. She had four months or she had
thirty one radiation treatments. She had a month break, four
(00:47):
months of high dose chemotherapy with stem cell Transplantee.
Speaker 1 (00:51):
Assume this is after removing the tumor.
Speaker 2 (00:54):
Yeah, and so you know, fast forward, she does her
treatment radiation treatments for high dose chemotherapies March thirty, first
of twenty ten.
Speaker 1 (01:05):
I'm sorry, what does you said? High dose chemotherapy? What
does that do to a three year old?
Speaker 2 (01:13):
It's tough, bet, it was seven days.
Speaker 1 (01:16):
What you need? You know? The problem is we get
desensitized to the word chemotherapy. We are so used to
people having cancer and hearing about radiation and chemotherapy, and
let's face it, people live and die with cancer all day,
every day around our world. And we've got brans cancer
awareness and all this other stuff, which is great. But
(01:40):
the problem is, I think we talk about it so
routinely we get desensitized to just how devastating it is.
And so I'm thinking about a three year old taking
what you're calling high dose chemotherapy. I don't want to
get to grow. And I wondered, brother, I would do
(02:04):
nothing but honor your daughter's life. But tell us what
that looks like and feels like from a parent's point
of view.
Speaker 2 (02:14):
Uh, I mean, it's it's tough. You know, it's your
your three year old, and she's lost weight. You know,
you don't see it at the moment. I think it's
crazy now for us to like look back at pictures
and see like how skinny she truly was. But you know,
her treatment was again, it was the high dose chemo.
Was her getting slammed with different a cocktail of different
(02:37):
chemo therapies for five days straight here in the Chili'scare Center,
and she'd get a day break and then the seventh
day they'd give her her stem cells back because you
had to resuscitate her body. And that was the only
way to do it. But I mean the chemo was
so toxic that anytime we were around her, we always
(02:59):
had to work her gloves. I mean when she peeded,
it burned her. When she peeded, it.
Speaker 1 (03:07):
Was which means she was crying and she was in pain. Yeah,
and you can't even touch your child with your bare hands.
Speaker 2 (03:17):
No, you're not supposed to. But you know, as a
parent you don't care.
Speaker 1 (03:21):
But still, Yeah, the point is, I mean we hear, Okay,
how does chemotherapy. We're talking about a three year old
child who's in pain, sad, scared, burns when she peas,
and parents just pleading for their daughter to recover. It's
(03:46):
it's horrific.
Speaker 2 (03:47):
Yeah, but you know, she goes through the treatment and
March thirty, first of twenty ten, she's declared cancer free,
which was something we never expected to hear. Cancer free,
(04:08):
cancer free.
Speaker 1 (04:09):
Literally it's out of her body.
Speaker 2 (04:11):
She's beat it. So now we're moving.
Speaker 1 (04:14):
To and she's four now or almos about.
Speaker 2 (04:17):
To be four. So she turns. For a week after
April eighth, we were on her make a.
Speaker 1 (04:22):
Wish pretty nice birthday present.
Speaker 2 (04:24):
For her fourth birthday, we were on her make a
wish trip at Disney World, and that was the goal
right through treatment. That was the goal to get her
to her make a wish on her birthday so she
could go to Disney. She wanted to spend her birthday
at Cinderella's Castle. That's what she would always say. And so, yeah,
(04:44):
so she beats it. We try and get our life
back on track, back to normal. You know, I go
back to work in the Navy. In the Navy, we
stayed here and I didn't have to worry about anything,
and even the Millington base they gave me that year
off anyway, So I got a whole year off to
just worry about Ariana. I didn't go back to work
to after her make a wish. And but anyway, so
(05:07):
Ariana's cancer free March three, first, twenty ten, we go
on her make a wish. Unfortunately, in July of twenty
and eleven is when the relapse comes. So if the diagnose,
if the prognosis and the diagnosis was grim the first
time around, it's even worse the second time around. So
at that point, now we're looking at the possibility as
(05:29):
that it's a genetic disposition and she can't fight off
that cancer. So now even here at Saint Jude, we're
looking at how can we extend her life best with
doctor Gajar, now we're sitting and talking how can we
extend her life? So this is in July twenty and eleven,
and even doctor Gajar tells us like, hey, you know,
(05:50):
I'm not sure she'll be here for the holidays, Like
we need to do you guys need to do everything
you can with her while you have her. So December
comes in, rolls, you know, comes and goes. February rolls around.
Now she's two months past this expiration date that we've set,
(06:10):
and doctor Gajar comes to us and says, hey, I
have this experimental Kimo that we can try. Mariana will
be the first ATRT patient at Saint Jude to receive it.
So we give it to her and it shrinks to
tumor by ninety percent, which is not something that we
(06:31):
at all expected. She's still not curable. It's still you know,
it's still now we're still playing the extension game. But
now we've bought her even more time. Right, and Ariana,
again she's the first ATRT patient to receive it, and
thanks to this drug, we got an extra three years
(06:52):
from that date. From that relapse date, Soriana did not
pass away till March of twenty fourteen, two weeks shy
of her eighth birthday. And thanks to donors and supporters
like you, there was so many different things afforded to us,
Like we were able to figure out while we were
moving from Japan where we were going to live, which
was at the Target house until we bought a house
(07:15):
and we were fed. My other daughter was taken care
of because we didn't have to worry about anything during
treatment those five years. Anytime Ariana felt well enough, we
always asked her, like, what do you want to do?
You want to go to a Passo Phoenix or you
want to go to Disney World. And because because we
didn't have to pay for treatment or to go to
(07:35):
Disney World, so Ariana passed away again two weeks shy
of eight. She had been to a Disney park thirteen times. Wow,
so she had been to Disney. My wife and I
were talking about this last night. So she had been
a Disney World in Orlando nine times, and she had
been to Tokyo Disney three times and then the Anaheim
Disney ones. So Ariana and Olivia have been to Disney
(07:59):
Disney more than your average adult. Right, so.
Speaker 1 (08:07):
You're still in the Navy and now you work for
Saint Jude. How about happen?
Speaker 2 (08:17):
So when arian I'm passed in twenty fourteen, I don't know,
it's hard to tell it. I mean, if you walk
around the campus and meet families, it's really weird how
Saint Jude draws everybody in. It's a stop for a
second on that.
Speaker 1 (08:33):
It's really weird how Saint Jude draws people in here.
We talked about when you were in San Antonio, and
I ask, you know, besides the prognosis and everything, you know,
the family's sick, the kids sick physically, but the families
(08:55):
emotionally sick. You know, they're sick to their stomachs, are sad.
And you know it dawns on me walking through this
campus that this place heals families too. Because of what
you just said. Explain that how quote this place draws
people in.
Speaker 2 (09:17):
I think, I mean, I think you touched on it earlier.
It's the sense of community that you have here. Right, So,
when I was telling you about Ariana's diagnosis, you said
you didn't have a community to lean on. We didn't
find that community till we got to Saint Jude. And
you know, because now here you have other families that
are being treated for ATRT or brain tumors. Right, So
(09:41):
now you're meeting people and you're understanding what they're going
through and what you're going through, and there's people that
you can communicate on the same level with. And now
you have a treatment team that is doing everything possible
for you and your kid. You know, those the first
two weeks here. I remember when we first got here, Uh,
(10:04):
my wife would walk around because you're stressed out, and
I can I can walk through that hospital right now
and point out who the new families are, right because
you see it in their face. And I just remember thinking,
like me and my wife would joke around and we'd say, dude,
they're spraying prozac through these vents, because like, why is
everyone laughing and why is everyone smiling? Why are these
(10:25):
kids having a good time?
Speaker 1 (10:26):
There's kids dying around here. Why is everybody so happy?
Speaker 2 (10:29):
Exactly? And you don't understand that and until you become
a Saint Jude family because and the reason that is
is because every other stress and burden is lifted off
your back. The only thing that you have to worry
about is keeping a smile on your kid's face. Right,
they're treating her, and they're paying for you, and they're
(10:53):
treating her, and they're giving they're even giving you extra
money for you to worry about your housing and your food.
So there is other than the fact that your kid
has cancer. There is nothing else that you're having to
worry about but that, you know.
Speaker 1 (11:09):
The antithesis to what you said is you said, I
can walk around here and I can tell the new
families immediately about the look on their face. I bet
you can also walk around here and tell the families
who have had the Saint Jude experience also by the
look on their face. That's kind of beautiful. Yeah, that
(11:30):
this place is treating the whole family and you experience that.
We'll be right back. So how come you work here?
(11:56):
What happened? How the Navy becomes Saint Jude for you?
Speaker 2 (12:00):
So we used to do a lot of speaking opportunities
that they would, you know, like this, They would invite
us to share our story, and Ariana was so I
worked on the Patient Family Outreach Team for a long time,
which is the team at Alsack. Alsack is the fundraising
an awareness organization for Saint Jude. So the Patient Family
(12:22):
Outreach Team is the team that goes into the hospital
and finds the families that want to share their stories.
So we used to share stories all the time. That
that was my actual job at ALSACK, But before that,
I was always tied in with that team sharing our
story got it. So what ended up happening is Ariana.
(12:44):
And again I was saying that that I was part
of the Patient Family Outreach Team because I didn't realize.
You don't realize how hard it is to find families
that one are willing to share their story comfortably. Two
you got to have the kids that are willing. And
then ourriana was our family was military, so we you know,
we can tell the story in many different ways. And
(13:06):
I'm bilingual, so that's hard to find and Ariana was
one of those. So Ariana was being asked to do
a lot of different things, Spanish commercials, commercials that are
targeted towards military, you know, things like that. So we
were always sharing our story. And one time I was
at a dinner with mister Shadiac was the CEO of ELSAC,
(13:30):
and he told me right before it was right before
Ariana relapsed. I remember he told me, He's like, hey,
why don't you come work over here? So this is
twenty eleven, and I was like, you know, at that time,
I was a lifer for the Navy. I wanted to
do my twenty.
Speaker 1 (13:46):
Retire get your retirement, yeah.
Speaker 2 (13:48):
And then just like buy a farm somewhere in a
toka and chill out.
Speaker 1 (13:52):
And maybe your kids would ask you out to party
with them one day.
Speaker 2 (13:56):
One day.
Speaker 1 (13:57):
You know, it's a generational thing.
Speaker 2 (13:58):
Possibly help him fail out of school. So he Yeah,
in twenty eleven, he put this crazy idea in my
head like, hey, maybe you should come work over here.
And I didn't want to. And you know, as I
told you, I failed out of school twice. I was
in a school guy. I joined the military because the
school was just not for me. But it did get
(14:20):
me thinking in twenty and eleven, like what am I
gonna do when all this is over, like the Navy,
Like what I don't want to keep working for the government.
So I registered myself for school June of two thousand
and eleven. What school online? It was like Colorado University,
what kind of school? So I signed up for my
associates just to get like so you had to have that.
(14:42):
It was just it got me thinking for life after
the Navy got it.
Speaker 1 (14:46):
So you're thinking, when Navy's over, I need to have
something to fall So you went ahead and said, I'm
gonna do an online associatestory.
Speaker 2 (14:52):
Right because every ALSAC job that you look at, the
majority of them require a degree. So I knew that
I was going to need something if this is what
I wanted to do. So in June of twenty eleven,
I registered to get my associates. Ariana relapses in July
twenty eleven. So but now I'm on the military's dime,
so I can't pull out of school or I gotta
(15:14):
pay for it, and I can't fail out, so I
keep going. I get my associates all while Ariana's getting treatment,
and I'm like, sain't that bad? So I continue doing it.
I get my bachelor's, I get a.
Speaker 1 (15:27):
That's not bad.
Speaker 2 (15:29):
Yeah, I get a business degree into my bachelor's in
marketing and International business. And this is in the middle
of Ariana's treatment. I think I have finals the week
that she dies. Yes, because I graduated in May. She
(15:50):
passed away in March, and I remember I had finals,
got my bachelor's and then now I have a here
a year and a half left in the Navy, so
I'm like, I might as well just go for my masters.
It's only a year and a half program. So now
I'm thinking, like the Navy's paying for this, right, So
I get my master's. I get a master's in marketing,
(16:13):
and now I feel like I can come work at
ALSAC and I feel like I earned it. Right. It
wasn't just because mister shadyact the CEO, told me to
come get a job here. It was because now I
prepared right. Not only are we a Saint Jude family
and I can understand that scope, but I've put myself
(16:34):
through school and now now I feel like I belong
here because everyone else had to do what I did.
Speaker 1 (16:40):
Right. Sure, Dad's so often, Yeah he's so proud. He
got it.
Speaker 2 (16:47):
He is, but he can't like get it out without crying.
It's hard.
Speaker 1 (16:51):
I love that man. That's great he is. And uh,
I mean he sent you off to ASU and he
partied like was nineteen ninety nine and came home and
was sleeping until noon. And now you've got a master's
and are working at the premier children's research hospital in
the world. And you know what, that's Arianna's legacy.
Speaker 2 (17:12):
It is so now I can't roll her out here
and tell you that she's junior or senior in high school.
But Ariana's legacy lives on through whatever it is that
I do at Saint Jude, right giving tours and sharing
our story.
Speaker 1 (17:32):
Let's talk about that community a little bit. I've read something.
You got to forgive me because I'm not the greatest
not taker in the world, but your family became close
family friends to another family with another child being treated
and I think his leg had to be removed.
Speaker 2 (17:52):
And Markel, what Markel, Markel.
Speaker 1 (17:57):
Tell us about what you did with Markell before that
happened the night before. I love that story.
Speaker 2 (18:07):
Yeah, so with Markel, Ariana was still alive during this time.
So again, this is when I'm going to school for
my bachelor's and I'm.
Speaker 1 (18:15):
Still But it's about the community, right, Yeah, it is.
You wouldn't know Markel and your families. I don't know
if you came from the same place or not, but
there's this connection through this thing your families are going
through called cancer, and your children and your children become
friends as a result of in your families and all
of that. That's part of the community, part of the
(18:36):
healing process for everyone. Right.
Speaker 2 (18:39):
Yeah. During that time, you know we met Markel, I
was in school, so I was juggling school, Ariana's treatment,
and the Navy, like I was doing all three and
then still maintaining a household. Right, it's all four. But
I remember it was finals week and Markel is they're
(19:03):
staying at Tri Delta, which was the Grizzly House back then.
But he's staying at the Tri Delta House about to
have surgery the next day to amputate his leg. And
I remember he calls me how old Markel had to
have been, like twelve or thirteen.
Speaker 1 (19:22):
Again, we hear the world childhood cancer, and I feel
like we drive past it like it's a fender bender
because we're just used to hearing it. A twelve year
old kid, Hey, we're going to have to amputate your leg.
Speaker 2 (19:38):
Yeah, And I remember, I remember he called me and
he's like, what you doing, man, I'm like, nothing, dude,
just sitting here doing homework, you know, And he's like
he's all, hey, you know, I used to always come
get him and take him to Popeyes. He used to
love Popeyes, Like and Popeyes coincidentally was all the way
by my house.
Speaker 1 (19:55):
It's only because Popeyes is the best chicken on earth.
Speaker 2 (20:00):
Well schof that conversation.
Speaker 1 (20:02):
But and Coachy Corner has a great barbecue and Popeye's
chicken spicy chicken chicken breast with the mashed potatoes and gravy,
and their their they're spicy coldslaw man. They have the
best pepper on something.
Speaker 2 (20:16):
What they do have the best Hall of Baniel peppers.
Speaker 1 (20:18):
In town Jlopena peppers.
Speaker 2 (20:20):
Yeah, they're crunched chicken. They're crunching.
Speaker 1 (20:23):
Take that stuff back to a passo, bro, we're talking
about chicken right now.
Speaker 2 (20:27):
They're good for a chain. Yes, they're fantastic. And you
used to take them to pop So I used to
always pick them up like I was basically a zuber
at that time. And you know, he he I had
the thirteen year old best friend at that time. It
was like, I want to go to a Grizz game.
I would take him to Grizz game and he uh so, yeah,
he calls me after their appointment and he's like, hey,
(20:48):
do what you're doing? You know I'm I'm sitting here
doing homework, you know, I'm slammed with homework. And he's like, hey,
we we come, come get me. And I'm like, he's
a dude. He's like, I just want to play basketball.
Speaker 1 (21:00):
He's like, pulled it. You can't you stop? Pause? What
are you thinking when you hear that? Dude, You've got
to take your breath away?
Speaker 2 (21:09):
Yeah, I mean, you drop what you're doing and you
won't play basketball.
Speaker 1 (21:12):
I get that part. I'm talking about what you feel.
Speaker 2 (21:16):
I mean, it feels like a gut punch. Even now
talking about him. It's hard not to get emotional or
just feel that pit in your stomach. You know, he's
a twelve year old kid, little teenager. So how long
did you play basketball till the sun went down? I
mean as long as Yeah, I mean the basketball court
is still there. It's the court next to the Tri
(21:37):
Delta house. We just sat out there and played one
on one and shot.
Speaker 1 (21:41):
What was his cancer?
Speaker 2 (21:43):
He had all steel sarcoma.
Speaker 1 (21:45):
What does that mean?
Speaker 2 (21:46):
It's a cancer of the bones. But you know, again,
the whole community thing, I mean, where was he from Louisiana.
Speaker 1 (21:56):
And his mom was here with him? I guess his mom.
Speaker 2 (21:58):
Works here, not to is what his mom works here
now to you might want on your podcast?
Speaker 1 (22:03):
Are you kidding me?
Speaker 2 (22:04):
I'm not. She's right upstairs.
Speaker 1 (22:07):
Did he make it? He did not? How old was he?
Speaker 2 (22:11):
He passed away when he was seventeen or eighteen?
Speaker 1 (22:16):
Yeah, but his life was much longer given us time
here and you got to play basketball with his buddy. Yeah.
Speaker 2 (22:24):
Markel was you know, just talking about community. It's I
think everything I do, I carry so many of these
names that we met along the way, right, Markel being one.
I mean, I have him tattooed on my arm. He
Markel was just a kid that was larger than life.
(22:45):
You know, he was an amazing kid, you know, talking
about that moment, right, And I think all Saint Jude's
all all Saint Jude kids carry that at them. It's
like they can carry the worst news possible and take
it in stride. And it's because of the people they're
(23:06):
surrounded by and the treatment teams that they're surrounded by
that gives them that confidence. I feel like and hope
and hope and Markel was just he uh, I mean
I loved hanging out with him. He was, like I said,
he'd call me and be like, dude, I want some Popeyes,
and I'd have to come kid him and take them
to Popeyes. And so I remember, so here's here's the
(23:28):
first time I met Markel. Okay, So the first time
we met Markel was in New York City. We were
there for the thanks and Giving celebration on the Today Show,
which I'm sure you've seen. It's it's the week of Thanksgiving.
They have a Saint Jude family on every week or
every day, right, So we happened to be there the
week that they were there. We were the two families
(23:49):
that were chosen. And I remember him walking around Times
Square and then we did our thing, and but we
ran up and saw each other at the hotel again
after he had walked around Times Square, and I was
like his mom like comes up to us and tells us.
He's like, dude, we ran into Tracy Morgan, you know,
and I was like that's cool, you know, and he's like, yeah,
(24:12):
he's super nice. He was like chatting with us, and
I was like cool. But Markel's, you know, a little
bit further away. So when Markel comes up, the first
thing I tell him like, dude, I heard you met
Tracy Morgan. He's like, I didn't meet Tracy Morgan. He's
like Tracy Morgan met me. And that was just the
kind of kid that Markel was, right, and uh, I mean,
(24:33):
he was just he was just.
Speaker 1 (24:34):
A great kid. And that's just one more example of
how Enrique is a member of the army of normal folks.
Here he is juggling a ton, his daughter's battling brain cancer,
he's going to college, he's a husband and a father,
and yet he makes the time to serve another kid
(24:56):
battling cancer. It's remarkable, and the service of others continues
after the break. I want you to share with us
(25:18):
the story of the eight acts of random kindness for
the eight years your your daughter was on this earth.
Tell me about that.
Speaker 2 (25:30):
Yeah, So, as I said, Ariana passed away two weeks
I have her eighth birthday. We got to we celebrated
her eighth birthday and one of the cool things was
so her we did her birthday party like the last
few days in March. We had a pinata for her
(25:50):
because she's Mexican. Uh so we had a pinata.
Speaker 1 (25:53):
I'm not Mexican. I had pinatas for my kids. Culture
you know, everybody likes pinatas.
Speaker 2 (26:01):
So we had a pinata for her.
Speaker 1 (26:04):
Mexican good grief whatever.
Speaker 2 (26:06):
Okay, go ahead, we'll explore this software. But she uh,
so we had a pinata for her. She ended up
not feeling well and she had to go lay down,
and so she essentially missed her eighth birthday party. So
us in our head, we saved a pinata for her
because it was for her. And I remember when she
(26:28):
woke up after the party, she looked at us and
the first thing she said was did y'all break the pinata?
And we were like, no, you know, we thought that
you should break it. It's your birthday. And she started
crying because she was upset that the kids didn't get
to break the pinata and have fun.
Speaker 1 (26:47):
Her friends didn't get to Yeah, and it's so sweet.
Speaker 2 (26:50):
So she was always like that. She was always thinking
about others, and even when she was in treatment at
the hospital, if she see kids not having a good
time or off in the corner by themselves not wanting
to play, she always she always tried to pull those
kids in. So she was always extremely kind and thoughtful.
So again, she passed away two weeks. I have her
(27:12):
eighth birthday, but we gave her eight. So when she
did pass March thirty first of twenty fourteen, we were
just in a whirlwind of emotions and not.
Speaker 1 (27:21):
Knowing what to do, completely understandable.
Speaker 2 (27:24):
You know, just kind of lost in our grief. We
didn't want to celebrate an eighth birthday on April eighth
because she wasn't here with us anymore. I mean, we
had just had her funeral. So we decided. My wife
and one of her best friends were just chatting through
things on what to do on her Ariana's birthday that
they came up with wanting to do eight random acts
(27:46):
of kindness on Ariana's birthday, one act for each year
that she lived that we had her, And now we
do that every year since that day.
Speaker 1 (27:56):
What do you do?
Speaker 2 (27:58):
We just go around and find people.
Speaker 1 (28:01):
Just not at Saint Jude, but anyway all over, yeah,
I mean, Walt wherever.
Speaker 2 (28:08):
I mean, We've put bags together for new families at
Target House. I've you know, paid for people's meals, you know,
taking homeless people food, clothes, anything we can think of.
We try and just spend.
Speaker 1 (28:23):
That literally really random kindness to just honor your daughter's legacy.
Speaker 2 (28:30):
Right, Yeah, we anywhere we spend that day just being
kind of people and telling people about Ariana. Not necessarily
being kind, but like we always have like a little
bookmark that we share with people and we see and
this is why we're this is why we're doing it,
and then it has like Ariana's little story. So but
(28:51):
we feel like this is something that we should do
because the first year, you know, I went to work
the ninth the next day and I was still in
the Navy, And on the drive home, my wife tells me,
She's like, hey, will you pick me up a Starbucks
drink or whatever? She gets teased. She doesn't get coffee,
(29:14):
she gets those fancy teas, but you know, she always
has text me the order because I don't remember what
it's like. You know, it's deead of water that you
got to use apple juice and blah blah blah. Right,
So I remember I remember the ninth. The ninth, I'm
driving home. This was after the first year that we
did that. I'm driving home and this is my military
(29:39):
cheap self thinking, right, there's a Starbucks right about my
house that if you're in uniform, they won't charge you.
So I'm like I'm stopping at that Starbucks. So anyway,
I pull up through the drive through and she's like, hey,
you know, you know, I'm trying to pay because I
always try and pay no matter what. So I'm trying
to pay and the lady's like, no, it's not it's
(30:02):
on the house. Uh, you know, we got it. And
and I'm like, you know, I'm like why and she's like, well,
she's uh. She's also I didn't work yesterday, but someone
came in and did an act of kindness and they
asked that we pay it forward. And here's a book
mark and it was for this little girl, Ariana. And
(30:24):
you know, this is why, this is why I'm doing it.
And I chose. I chose you. And I was like, well,
thank you so much, you know, and.
Speaker 1 (30:30):
Did you tell her? No, you did not even say
that's my daughter. But it came full circle.
Speaker 2 (30:37):
It came full soulker. I told my wife and she
broke down and cried. But I felt like a break
down a crowd. If I would have told that poor
little teenager she lost it, she would she would. I
don't think she would have been able to work.
Speaker 1 (30:47):
Did you not ball on the way home.
Speaker 2 (30:50):
I've always been really good at compartmentalizing everything that we've experienced.
I mean even now, people will always hey, like, I
don't understand how you don't get emotional talking about Ariana.
Speaker 1 (31:05):
Tears do not mean you're not emotional. It's where your emotion.
Speaker 2 (31:09):
Is put right. But okay, I guess I can contain
that really well.
Speaker 1 (31:15):
But but yeah, it had to have hit you in
your core. It did when the woman in Starbucks gives
you a coffee and hands you the bootmark and had
no idea and said here, and it's about your own daughter,
your daughter's legacy coming right back through a drive through
(31:36):
window a Starbucks and eating in the face.
Speaker 2 (31:38):
Yeah, I just thanked her, and you know, drove off
and called my wife immediately. It was, Uh, it made
us feel like that's what we needed to do every
year because that was the first year.
Speaker 1 (31:53):
So I don't know the exact statistics, and I know
you probably do, so correct me or help me. But
thirty years ago, if a child got cancer, one out
(32:16):
of five survived it about twenty percent. And now, because
of Saint Jude and the amazing research they do and
the experimental stuff they do, I think it's four out
of five it's about eighty percent. It helped me with
(32:37):
those numbers. Is that is that close to right? What
is it?
Speaker 2 (32:40):
So in nineteen sixty two when Saint Jude opened its doors.
Speaker 1 (32:43):
Okay, sixty two, so that's uh thirty eight fifty almost
sixty years now.
Speaker 2 (32:50):
So in nineteen sixty two when Danny Thomas started first fundraising,
if you look at if you go into the pavilion
and you look at pictures of like the original fundraiser
that Danny would would do, you see a lot of
them where they're talking about childhood leukemia. So his goal
at that point was childhood leukemia. Leukemia's survival rate in
(33:10):
nineteen sixty two was four percent. How much four percent?
Speaker 1 (33:14):
Four It was a it was a death.
Speaker 2 (33:16):
Since today, thanks to all the research and all the
treatments that Saint Juda has helped develop, thanks to donors
and supporters and all their donations, the survival rate for
child the most common form of childhood leukemia is ninety
four percent. So that's you know, it's night and day.
(33:36):
It's completely different than it was when Danny Thomas started this.
Speaker 1 (33:41):
Organization, and overall, not even just childhood leukemia, but all
kinds of.
Speaker 2 (33:48):
Cancers all right, eighty percent now.
Speaker 1 (33:50):
Eighty percent survival rate against an eighty percent death rate.
What's it feel like to be part of an organization
that is doing that for humanity?
Speaker 2 (34:09):
I mean, it's the most fulfilling job I've ever had.
It's uh, it's great to know that I don't know.
So the way I look at it is, I feel like,
like you said, right, just normal guys make make make
(34:31):
amazing organizations, right, And I think these normal guys are
impacted by something in their life. So a lot of
these foundations and a lot of these organizations are are
created and founded because something impacted that person. After what
(34:51):
we've been through with Ariana and everything that I learned
and everything that we experienced with Ariana, the way I
look at it is when it it's all said and
done for me, when I'm done being here, I want
I want my kids to know that I did everything
I possibly could learning from the experience that we lived
(35:13):
with Mariana, and I gave back to everything that gave
to us. So the way I look at it is,
I've dedicated my career to the organization that gave us
so much hope and so much care for my daughter
that gave us an extra five years that we went
(35:33):
to God elsewhere, and I will forever feel indebted to
Saint Jude for them.
Speaker 1 (35:44):
You know, our podcast is an army and normal folks,
and we talked to a lot of normal folks who
have started extraordinary organizations or become involved in extraordinary organizations.
And you know, your story is so fitting because you're
a normal guy, and you know your parents are blue
(36:08):
collar workers, and you find a way to get in
the Navy, and you get married, you have two kids,
and your life is on its way, and you're interrupted
by a devastating news for your daughter, and you continue
to serve in the military, and then you figure out
(36:29):
how to get your masters after failing twice in your
younger years, and now you end up working at the
very hospital that gave your daughter hope and kids from
families that are so much like yours. And I guess
(36:51):
if you're part of that end of Saint Jude, your
whole goal is to continue to tell the story of
Saint Jude and what it meant to your family and
families like yours, and why it isn't so important that
people across the world support this place.
Speaker 2 (37:10):
Yeah, I mean, it's a it's an amazing organization. And
you know, one of the one of the things I
always say when I get to speak at radiothons because
radiothons like they always shoot for like the twenty dollars
a month they partner and hope, right, And one of
the things I always say when they're like, what do
you have to tell our donors or our listeners? I
(37:35):
think twenty dollars a month is amazing to be able
to donate, right, It's not. It's not unattainable. It's easy.
That's three Starbucks cups a day.
Speaker 1 (37:44):
Right, It's a sixteen piece bucket at Pope's that's nineteen
ninety nine.
Speaker 2 (37:49):
Yeah, easy, right, easy, So you can do that, right,
you can. You can leave the bucket at Popeyes one
time a month and for twenty dollars a month. I mean,
you're ensuring that these doors stay open. So I look
at it more as an insurance policy, right, because you
never know when you're going to need a place like
Saint Jude. It might be for your kid, it might
(38:11):
be for your neighbor's kid, it might be for your
niece or your nephew. But one day someone that you
know or that that's touched your life is going to
need these doors to be open, and twenty dollars a
day insures or twenty dollars a month ensures that those
doors are open.
Speaker 1 (38:29):
So, guys, let's ensure Saint Jude's doors always stay open,
and together we could get one step closer to the
day when no child dies from cancer. Once again. If
you're interested in joining us in this mission, go to
Savejude dot org. Backslash normal folks, I'm Bill Courtney. I'll
see you next week.
Host
Bill Courtney
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