February 14, 2024 • 25 mins
Welcome to Conversations with Kids Beating Cancer Podcast!
We are a non-profit organization called Wipe Out Kids Cancer, and every two weeks, we sit down with pediatric cancer survivors, also known as our Young Champions.
On this week's episode, we have Haylie and Niko, our Young Champion Board members, speaking candidly about their lives before and during their pediatric cancer diagnosis.
Our goal is to have raw, unfiltered conversations about the ups and downs of life since the cancer diagnosis. We hope that these conversations will help those who feel alone with their diagnosis realize that they are not alone. Our podcast is an opportunity to hear touching stories, experience genuine emotions, and find hope and encouragement.
Subscribe to our podcast to hear inspiring stories from pediatric cancer survivors/patients.
You can visit www.wokc.org to learn more about Wipe Out Kids Cancer or donate to us at www.wokc.org/donate.
Follow our socials!
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We are a non-profit organization called Wipe Out Kids Cancer, and every two weeks, we sit down with pediatric cancer survivors, also known as our Young Champions.
On this week's episode, we have Haylie and Niko, our Young Champion Board members, speaking candidly about their lives before and during their pediatric cancer diagnosis.
Our goal is to have raw, unfiltered conversations about the ups and downs of life since the cancer diagnosis. We hope that these conversations will help those who feel alone with their diagnosis realize that they are not alone. Our podcast is an opportunity to hear touching stories, experience genuine emotions, and find hope and encouragement.
Subscribe to our podcast to hear inspiring stories from pediatric cancer survivors/patients.
You can visit www.wokc.org to learn more about Wipe Out Kids Cancer or donate to us at www.wokc.org/donate.
Follow our socials!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:05):
Hey guys, Welcome to Conversations withKids Beating Cancer podcast. This podcast is
brought to you by Wipeout Kids Cancer, Dallas Footword pediatric cancer charity since nineteen
eighty. This podcast is designed forkids battling cancer or pediatric cancer survivors to
sit down with their young Champion boardmembers as they go through raw, unfiltered
(00:26):
versions of their journey since their diagnosis. This week, we have Nico and
Haley talking about I Need to Lightat the End of the Tunnel and how
they became chefs bout their time inthe hospital. So if you like what
you hear, make sure to giveus a five star rating or wherever you
listen to your podcast and tell yourfriends, well, Hey, I'm Haley.
(00:57):
I'm seventeen years old and I'm fromTrivic Club, Texas and I was
diagnosed with tsel al leukemia when Iwas eleven years old. Hi, I'm
Nico. I am seventeen years oldfrom Frisco. I was diagnosed with Burkitts
on FOMO when I was thirteen,and so I feel like we're starting this
podcast to like really reach out topeople and let them know that they're not
alone, that they're here and likeletting parents like kind of know what their
(01:18):
child is thinking, because sometimes whenyou're a diagnosed with cancer, it's feels
so lonely and like you don't relateto anybody. And I feel like we're
really trying to reach those people whoreally need to feel like they have a
community, because they do. AndI was diagnosed. I was eleven years
old, So going back, Imean it was a long just like diagnosis.
I mean, I had been feelinglike my stomach had been hurting for
(01:38):
a few days. I stopped eating, and like my mom knew something was
wrong, and we even went tolike the local doctor and he's like she's
fine, Like you can send herback to school. And I just wasn't
feeling okay, and towards this secondto last day of school, I was
just laying on the couch like Ididn't want to go to school, like
I was just something was not right. And finally my mom was like,
(01:59):
oh, okay, like let's goget We finally got a blood test and
they said, okay, well we'llget back to you in like three days.
And I hadn't been eating and sothe blood test came back had been
flagged. So they said, okay, they called my mom, you need
to get to the hospital, andso we went and we got a a
type of scan I see what waswrong with my stomach. And so they
had the scan done and it lookslike my kidney was inflamed and it was
(02:23):
bigger than it should be and likethat's not right. And those results didn't
come back later, but like wewere in the room and the lady was
like, something's not right, likeyou need to go to the doctors.
And even just being in that spot, like I had eaten I think two
bites of food that day and theschedule it had been planned, and so
I threw up that morning and sowe got it to h we got the
(02:45):
miracle was just like being able toget that test and so getting it flagged
and everything was just coming up likesomething's not right, something's not right,
but like, okay, we're justgonna go home. Hopefully it'll get better.
And we thought something was wrong withmy stomach. And finally I was
at home one day and this isall within about a week two weeks,
we get a call and the doctor'slike you need to come to the hospital
(03:07):
right now, like get in thecar and drive to the er. So
we grabbed a few things. Ithink we grabbed like a key shirt and
a toothbrush and we put it ina bag and we were thinking maybe like
this is a just in case we'rethere for a few hours or maybe overnight,
like because the doctors sounded really worriedand they just said, like they
wrote all these numbers, they saidthese things. My mom wrote them down
and she's like sheho'd know what thesenumbers went. And we got to the
(03:29):
hospital and they're like these numbers aren'tright, like this isn't right. So
they took the test again and theywere the numbers were even higher than it
should be. They were off thecharts and something was wrong. And so
we had been in the hospital inthe er for about a few hours then
and something just the doctors like wewere coming around and like they tend to
leave again and like I got IVSand all this stuff, and they had
an EKG in my room and likeI was like, we didn't know what
(03:52):
this was. And so the doctorskept coming in and out, and my
mom stopped one of them and shewas like, what is going on?
And he said, well, we'rewaiting for the chaplain and she was like,
oh my God, like the chaplainlike, what's going on, Like,
what's wrong with my baby? Anda friend called who worked at the
hospital and she was like, daughter'snumbers came across my desk leukemia. And
so my mom was like, okay, okay. So she prayed on the
(04:15):
phone with her and she's like,okay, like this is the beginning of
something, like God, please bewith us through this. So she went
to the doctor's finally and she's like, look, I know what it is.
It's aukemia. And they were likevery confused, like how do you
know. So then she's like,I want to be able to tell my
daughter what this is. And upto that, they had done a scan
(04:36):
on my heart as well, andthey found out that there was a mask
growing around my heart and choking myarteries and that I shouldn't even be laying
down, so they had me proppedup so that my lungs wouldn't collapse because
the mass is so hard and sobig. And so my mom came in,
she came to the er room.She said, Haley, it's leukemia.
(04:57):
And I didn't know what leukemia wasat the time. But I knew
what didn't sound good, and Iremember just sitting there and breathing and saying
and that's how I found out.And then I was in the hospital for
a month, and that's what startedmaking the therapy journey. And and a
half years later, I'm now doinga lot better. You remember a lot
more of your story than I do. But the first parts of our diagnoses
(05:23):
were really quite similar. Actually,I spent a lot of my time throwing
up and getting sick. This kindof came out of nowhere a week prior
or two weeks prior. I supposeit's my diagnosis. I was as normal
a kid as any, and thena little over a week before I started
noticing like stomach cramps, pain inmy guts. It just slowly got worse
(05:47):
and worse, and my whole familywe thought it was food poisoning, and
we went to the doctor, wentto the er, and they didn't really
they couldn't figure anything out. Theywere just like, Okay, well it
seems like you've got some digestive problems. You're dehydrated, so we'll give you
some fluids. And so they gaveme ivy fluids and they sent me home.
(06:08):
We knew something was still wrong becausekind of like you, I wasn't
eating at all, and I wasstill growing. I was expanding outward from
the mill, and they knew thatsomething definitely wasn't right with that. Stomach
pain was getting worse, you know, I was throwing up, always nauseous.
I was sitting up all night,and I curled in a ball just
because of the pain in my gut. And so we eventually went back into
(06:31):
the er a second time. Andthe first time, when they decided that
I was just dehydrated, they'd donesome scans, they didn't find anything.
The second time they did more scansand they discovered that there was a mass
and that's when they were like,okay, well this is bad. That's
not supposed to be there. That'snot an organ, and they sent me
(06:53):
to the hospital straight from there.It was really fast. Everything happened like
immediately right on top of it,right on top of the last thing.
So we just went to the hospital. We were not prepared at all.
We thought we were going to theer. They were gonna tell me I
had, you know, food poisoningor some sort of intestinal issue, and
give me some sort of you know, quick medicine to get rid of it,
(07:14):
and I'd be on my way,and then I wasn't. We were
rushed to the hospital immediately. Iwas taken by ambulance and my chemotherapy started
that day. We were just immediatelyin and we didn't even have a chance
to pack the toothbrush, which whichwould become a thing pretty quickly after,
because we weren't, like I said, not at all prepared. The whole
(07:35):
family was there because you know,holy cow, you have a mass that's
growing that you're not supposed to have. So nobody's you know, leaving to
go home. Everybody's there kind ofpanic mode. I was sedated, so
I've got I've got little flashes ofmemory. That's scary. I mean,
like not knowing what's going on withyour child or for you, like not
(07:56):
knowing what's going you just don't feelwell. So what I've heard in so
many stories is that like people don'tknow what's going on, people don't know
what's wrong with you, but justsomething isn't right. You're not acting like
a kid anymore. You're just notdoing something right. And I feel like
that was so scary, especially evengetting a diagnosed was just realizing you're kind
of going to start losing your likejust for this time, losing your childhood.
(08:16):
You have to take so much timeout for chemistry. Certainly everything changes.
Some of the worst things for treatmentwas losing my hair. I mean,
as a girl like had been,I had long, long hair,
and spending that first month in thehospital, my hair started falling out.
And I remember about a week inI started chemotherapy the day that I found
out. Those first two nights inic you were probably some of the worst,
(08:37):
just fighting for my life. Iremember my mom was just praying over
me, and when she stopped praying, I set the alarms off, and
like the oxygen was going off.I mean, like I couldn't even lay
down because just the cancer was reallytaking over my body. And when I
was first diagnosed that first night,I had ninety nine to one hundred percent
cancer cells in my white blood cells. So it's just hard to realize all
(08:58):
this stuff is going on and everybody'sworried for you, and sometimes at those
points you didn't even know if you'regoing to make it through the night.
I mean, like that's something real, like it's just all coming in so
fast, and my mom had towatch her baby go through that and she
could do anything to help. Ifeel like that's something that parents have to
go through is so hard for them, is having to watch their child go
through something but they can't help.Like if a kid is hurting, like,
(09:22):
they want to be there, theywant to hug them, and even
in that hospital bed, sometimes theyjust can't be there and they can't take
that load for them, and that'sreally hard for the parent. For me,
like just laying in those hospital rooms, especially the first month was just
seclusion. And even I had twoand a half years of chemotherapy, so
that was just a lot of seclusionand just missing out and it was scary,
(09:43):
not knowing if I was going tomake it through that, how is
the cancer going to react to thechemo, And how is this next scan
gonna go? How is this nextblood test gonna go. Sometimes it's just
overwhelming and it was hard at times. I feel like that's something that not
everybody can relate to. And whenyou're diagnosed, people are oh, I'm
sorry, I'm so sorry to hearthat. There was so much I'm so
(10:05):
sorry to hear that. I'm prayingfor you. Oh, we'll be there.
For you, and it isn't alwaysthe case. People couldn't relate.
Honestly, I feel like I wasextraordinarily lucky with my cancer. I know,
sounds like a really weird thing tosay, you know, I'm so
lucky to have the cancer that Ihad because it was so aggressive. I'll
say that to people and they'll belike, what, Well, I got
(10:28):
super lucky because the aggressiveness of thecancer meant the treatment had to be equally
aggressive and they knew how to dealwith it. You had to suffer for
two and a half years. Igot so lucky. I only had to
deal with it for four months.I mean, I'm so incredibly grateful honestly
that that's all that me and myfamily had to go through. I honestly
(10:50):
can't even imagine. And you're talkingabout like fear every night that you might
not wake up the next morning.For me, that wasn't something that ever
really clicked somehow. I don't knowif it wasn't because I was there,
if it was because I wasn't therelong enough, or just because I was
always sedated and so I just didn'thave the time to think about it.
For me, really, the mostfrightening part was that, like it was
(11:13):
just continuously some part of my bodywas always failing. Something was falling apart
at every moment I would I would, you know, go to sleep for
the two hours of sleep that I'dget at a time, and I'd wake
up and something else was wrong.You know, I can't feel my leg
I physically can't eat I you know, my head feels like it's about to
(11:33):
implode. You know, it's justalways something new. And that for me
was the scariest part. It wasn'tthe worst thing, but you know,
it is scary. I mean therewasn't just like you know, not knowing
if you're going to wake up,but also having to worry about like what
the next round of chemo was goingto do. Because I had a really
bad problem with steroids, actually justhaving shaking, it was going through withdrawals.
(11:54):
I had steroids once a month,so I'd get on steroids and I'd
be hungry all the time. Yeah. I wait for seven point thirty to
order my breakfast every morning in thehospital, and I ordered my breakfast.
I ordered my mom's breakfast and thenI eat her breakfast. Yeah, that
was one good thing. Steroids.Oh, I became a really good cook
on steroids. I watched way toomuch food nowwork. Yes, I did
(12:15):
the exact same thing. I wouldwatch the Food channel on the TV.
I remember specifically one time somebody madethis chicken nugget, bacon, lettuce burger
thing. I was like, thatlooks fantastic. So I pull up the
food ordering menu and I order chickennuggets, lettuce, tomato sauces and like
a hamburger. I took the bunsand I made that what I just saw
(12:35):
on the TV. Like, youknow, it's hospital food cooking, but
it's finding simple joys when you're inthe hospital, yes, which can be
hard but really important. Like lookingfor those things in the hospital. It
could just be going to the playroom, or sometimes you can't leave your
hospital room, so it could justbe having that time with your family or
just sitting and having a conversation.And one thing about that being in the
(12:56):
hospital for so long is that you'reto be You're gonna become closer with that
person who's with you in It couldbe a parent, it could just be
a nurse sometimes that you just youbond with them. And that's one gift
that I got with my mom,especially was that in the midst of all
this trials, I became so closewith my mother and so close with the
Lord because I had to learn,okay, like this is hard. Who's
(13:18):
actually who's there for me? Peoplewho are there for me? Prove that
they are. They're true, they'rereal, like they're good friends, they're
an amazing parent because they're there foryou. They're there for you, and
I think that's really important because noteverybody is going to be there for you.
The reality is like they might bethere for you when you first get
diagnosed, they're gonna be oh mygoodness, like you know, I'm so
sorry to hear that. You know, we're gonna they'll maybe cook you a
meal. I had people cook melike a meal the first few weeks at
(13:41):
the hospital. But I mean twoand a half years is a long journey.
People kind of you know, likethey keep on moving on with their
life. But the thing with canceris your life is put on pause,
like your life is you're trying,you're just fighting to save your life,
and you're just fighting for your life. It's that's what's important in that moment.
It's sadly not focusing on the greatas a childhood. It's hoping that
you have a future. There's youmentioned that people will be super like helpful
(14:07):
during the first few weeks, maybeeven a month your treatment, and even
in you know, my four monthsof treatment, in a couple of months
of like quarantine, post treatment,I saw the same thing. You know,
people and it's nothing, nothing againstthem at all, but you know
they come to support you at thebeginning. And you know, people have
have their own lives to deal withtoo, and they can't they can't be
(14:30):
there the whole time. There thereare some people who will really make the
effort. Those those are some ofthe people that, like I saw a
lot of what truth of the peopleI hung around with was because you know,
when when this happened, you know, the real side of people comes
out when they when they see somethinghappening to someone that they know and do
they just like, oh, whateverit's happening, it's none of my none
(14:50):
of my business. Or do theycome to try and help you, And
kind of it's almost a blessing tobe able to see what what people are
are really like, you know,how they how much they really care about
you. There there are a lotof little blessings too. There's a lot
of there's a lot of awfulness toit. You know, anybody, anybody
who's experienced it can agree that canceris no fun. It's it's pretty pretty
(15:16):
terrible, but there are lots ofyou can find lots of little blessings.
I think that's a really important thingto remember. That's a really good I
love that that, Like, eventhough it's really hard. That's one thing
that I want people to know isthat it's gonna be hard. That's not
something a lot of people say.It's just like not something you might want
to realize, but realizing it's gonnabe hard, but there are people who
are gonna help you get through it. And sometimes it's just realizing okay,
(15:39):
like it's a hard moment. Yeah, like you need to cry. Sometimes
it's gonna be a long journey,but know that lean on the people who
are there for you. And onething that really helped me was my faith.
Is that not I know not everybodylistening might believe in God or all
that, but I promise you,like there is someone there who's there for
you. And I really truly believethat that firm foundation of faith helped me
(16:02):
so much through it, and thatknowing that, like there was someone there
for me who loved me, whowas caring for me, and had a
purpose and a plan for my life. And that's one thing that helped me
get through it as well, wasknowing, Okay, this bad thing happened
to me, What am I goingto do about it? Am I just
gonna like? Am I just gonnabe sad and cry about it and just
like say, oh woe is me? Or am I going to be like?
Okay, like this bad thing happened? And so now share my stories
(16:25):
with other people and be all light, be joyful even in the midst of
trials, because everybody's going to behappy when things are going good. But
who are you going to be whentrials do come your way? Absolutely,
you know, weaknesses are revealed andsuffering that sorry your strength. I hate
to be repetitive, but finding thebest parts of all the suffering that you
go through is really so important becausethe suffering itself can be a blessing because
(16:48):
of everything that mind's out of you. You know, your diamonds are made
under pressure. That's exactly what Iwas going to say. You know,
there are so many sayings I couldgo on and list tons of them.
But you know, graph at point, graphight isn't important. Graph makes pencils.
But yeah, exactly, like graphiteisn't important, like nobody wants a
graphy and makes pencils. Yeah,but that pressure, that heat, like
(17:11):
that's what makes it important, Thatmakes what makes beautiful is that if we
don't go through those trials, weregonna go through those hard things, we're
gonna stay graphit. I think alot of people ask why me, why
did this happen to me? Yes? And I mean it's hard because you're
watching everybody else they're doing good,like this doesn't happen to me. This
happens especially childhood cancer, like Iwasn't smoking, I wasn't doing all this
stuff, like the child didn't.Like sometimes it's hard because you're doing everything
(17:34):
right and it's just it's it's reallyeasy to wonder like why did this happen
to me? And it's hard.Yeah, sometimes I have question. I
think it crosses everybody's mind, likewhy me, why did this happen to
me? This happens to this happensto older people, This happens to other
people. It doesn't happen to me. It doesn't happen to people around me,
but sometimes it's like it's it takesa while. I think even for
(17:55):
me, it took a time toaccept it, like okay, this is
reality now, but taking that andlike okay, this isn't new normal,
okay, So adjusting to this andrealizing these are the things that I once
took for granted. And realizing thingslike hair or like you need to go
hang out, or just sometimes foodsometimes you couldn't eat on the steroids or
stuff like that, Just like realizingwhat's important and just realizing the value of
(18:17):
things. It's so important now,just the simplest things. It doesn't pass
you by. My pickiness for foodwent down a lot during cancer, between
the between the steroids and the factthat every other week everything tasted like chemotherapy
drug after tastes my only h what'sthe word here, We'll say qualification for
food is that it doesn't taste likechemotherapy medicine. At this point, it
(18:42):
doesn't have to be the best,because now I'm just grateful to have food
that you know, tastes like food. I'm curious your hair, did you
shave it or did it just follow? Did you do did you do shaving,
and then that did you play aroundwith hairstyle? That was the thing
that helping me cope with losing myhair, especially as a girl, is
like, you know, like lotslike all the girls like they had their
(19:03):
pretty hair, they have like curledor braided and all that. So when
it first started falling out, Ithink I just kind of let it fall
out. I mean I was inthe hospital for a month, so that's
like the whole time my hair waskind of coming out, and it got
really really thin. I remember juststanding I had been quarantined in my room,
couldn't even leave my room for aboutand I was just standing in the
bathroom mirror brushing my teeth, andI was there with my mom, and
I was looking in the mirror andI started getting the moon face, and
(19:26):
my hair was thin enough that youcould just see my head. And I
just looked at myself and I waslike, I don't even recognize myself,
Like I just look so different.I don't look like myself, Like I
look like I look like I havecancer, which I did. And that
was that was, I think adefining moment, and I don't think that's
something I'll ever forget. Is likelooking at myself in the mirror and realizing,
(19:48):
Okay, I'm losing my hair.I'm getting the moon face, like
the it's all coming in. Andthe first time I lost my hair.
I lost my hair three times.It came back earlier every time. The
first time, I let it stayvery very very very thin for like two
months, and then I cut it. I just kind of shaved it off
(20:08):
after it was very very thin.But that's how I kind of coped with
it. But I think people copewith it in different ways. I think
I should I recommend just kind ofshaving it off. You don't have to
deal with all the hair falling outeverywhere. I was like shedding like a
cat. Yes, yeah, Iwould wake up every day out of my
hospital bed and just hair all overit. I remember the first thing I
(20:29):
did was I got a mohawk.Yeah, because I was like, my
hair's falling out anyway, I mightas well have some fun with this.
So I buzzed the sides and gavemyself a sort of mohawk like Hawkeye.
And that one was an endgame.I think. I don't know movie references
that I don't remember anymore, Butthen you know it kept falling out,
(20:52):
so eventually we had to shave it, but it was a little fun while
it lasted. And kind of gofrom that hair thing and talk about something
else that I want to talk abouton the podcast here, and if I
were to give a piece of adviceto parents or really anybody going through this
experience, the parents or the kids, it's something that we've mentioned a few
times in the podcast, and that'sreally this cancer. You know, it's
(21:18):
it's here, and it's it's goingto happen. And at this point though,
it's the doctor's job to deal withthe cancer. And now your job
is to make the best of thetime that you have because, you know,
Haley was mentioning, you know,you don't know. Every day you
go to sleep hoping that you're goingto wake up in the morning, and
you don't know. So every moment, every moment, is precious and spending
(21:42):
spending the time that you have,you know, worrying about all the little
details and about what the doctors,what the doctors are doing, and what
the doctors have you have. Youonly have so much time, and me
there are better ways to spend itthan worrying about the things that you can't
control. I think it's best totake all of the opportunities that you have
to spend quality time with these peoplearound you, to get what you can
(22:04):
from the moments that you have,because you don't know how many you have.
This could be a great opportunity togrow through experiences, through the suffering,
through you know, learning from thesepeople. And still you know you
have to make the best at everymoment. So what what is out of
your hands? Worry about it?Yeah, there's nothing you can do,
So spend every moment that you canmaking the most out of the time that
(22:27):
you have. I learned to lookfor the little things and that there's you
can find so much joy. Imeant all the struggles that it's going to
be hard, and there are somany days, but I just laid on
the floor and cried. But whatI remember, I remember those hard times.
What I also remember is my momcoming and hugging me, or my
dad just saying we're going to beso close to this, like becoming close
(22:48):
with my family, especially my mom, but also my dad and my brother.
Like I gained so much from goingthrough cancer. I know that's really
hard to say, and in themoment it did not feel like that.
But going back, I look backand I'm like, Wow, look how
faithful the Lord was. Look howfar I've come. And if I was
given the opportunity to never have togo through this, I know it's kind
(23:11):
of hard to say, but Iwould still choose to go through all that
hurt and pain because of the personthat it made me that I am so
much stronger because of it. Iknow how far I've come, and I
know the value of so much moreand I've gained so much wisdom from that
I'm different from the people around mein a good way, and that it
is it's hard. I think I'vesaid that so many times because that was
(23:33):
something that I wish people had toldme. And that's me I wish parents
knew, and that even the kidknew. Is that it's a long journey,
and that don't try to live tillthe very end, just live till
every day, live every moment,and that you don't know what tomorrow olds,
but just love, love every momentand if there's gonna be hard moments
and there's gonna be good moments,but just know that you can get through
(23:56):
this. And there's so many peoplewho are there for you, and that
there's a whole community who knows whatyou've gone through and can talk with you
about it, and that finding thatcommunity is also really important, finding those
organizations who are reaching out to kidsin the hospital or to the parents that
sometimes it's hard to be like,oh, like I want to do it
myself, like I think I can, I can do it, but you
sometimes, especially in these moments ofhardships, you don't have to carry those
(24:17):
burdens. That there is such awhole community that's willing to help you and
carry it with you. And Iwant to leave everybody listening to the podcast
with knowing that there are people therefor you and we know what you're going
through. Thank you for listening onthis week's episode of a Conversation with Kids
Beating Cancer podcast. Other links willbe down below into description, and you
(24:38):
can visit us and donate at WKCdot org backslash donate. That's WKC dot
org backslash donate. Kids shouldn't getcancer. When they do, you can
help. See you next time.
Hey guys, Welcome to Conversations withKids Beating Cancer podcast. This podcast is
brought to you by Wipeout Kids Cancer, Dallas Footword pediatric cancer charity since nineteen
eighty. This podcast is designed forkids battling cancer or pediatric cancer survivors to
sit down with their young Champion boardmembers as they go through raw, unfiltered
(00:26):
versions of their journey since their diagnosis. This week, we have Nico and
Haley talking about I Need to Lightat the End of the Tunnel and how
they became chefs bout their time inthe hospital. So if you like what
you hear, make sure to giveus a five star rating or wherever you
listen to your podcast and tell yourfriends, well, Hey, I'm Haley.
(00:57):
I'm seventeen years old and I'm fromTrivic Club, Texas and I was
diagnosed with tsel al leukemia when Iwas eleven years old. Hi, I'm
Nico. I am seventeen years oldfrom Frisco. I was diagnosed with Burkitts
on FOMO when I was thirteen,and so I feel like we're starting this
podcast to like really reach out topeople and let them know that they're not
alone, that they're here and likeletting parents like kind of know what their
(01:18):
child is thinking, because sometimes whenyou're a diagnosed with cancer, it's feels
so lonely and like you don't relateto anybody. And I feel like we're
really trying to reach those people whoreally need to feel like they have a
community, because they do. AndI was diagnosed. I was eleven years
old, So going back, Imean it was a long just like diagnosis.
I mean, I had been feelinglike my stomach had been hurting for
(01:38):
a few days. I stopped eating, and like my mom knew something was
wrong, and we even went tolike the local doctor and he's like she's
fine, Like you can send herback to school. And I just wasn't
feeling okay, and towards this secondto last day of school, I was
just laying on the couch like Ididn't want to go to school, like
I was just something was not right. And finally my mom was like,
(01:59):
oh, okay, like let's goget We finally got a blood test and
they said, okay, well we'llget back to you in like three days.
And I hadn't been eating and sothe blood test came back had been
flagged. So they said, okay, they called my mom, you need
to get to the hospital, andso we went and we got a a
type of scan I see what waswrong with my stomach. And so they
had the scan done and it lookslike my kidney was inflamed and it was
(02:23):
bigger than it should be and likethat's not right. And those results didn't
come back later, but like wewere in the room and the lady was
like, something's not right, likeyou need to go to the doctors.
And even just being in that spot, like I had eaten I think two
bites of food that day and theschedule it had been planned, and so
I threw up that morning and sowe got it to h we got the
(02:45):
miracle was just like being able toget that test and so getting it flagged
and everything was just coming up likesomething's not right, something's not right,
but like, okay, we're justgonna go home. Hopefully it'll get better.
And we thought something was wrong withmy stomach. And finally I was
at home one day and this isall within about a week two weeks,
we get a call and the doctor'slike you need to come to the hospital
(03:07):
right now, like get in thecar and drive to the er. So
we grabbed a few things. Ithink we grabbed like a key shirt and
a toothbrush and we put it ina bag and we were thinking maybe like
this is a just in case we'rethere for a few hours or maybe overnight,
like because the doctors sounded really worriedand they just said, like they
wrote all these numbers, they saidthese things. My mom wrote them down
and she's like sheho'd know what thesenumbers went. And we got to the
(03:29):
hospital and they're like these numbers aren'tright, like this isn't right. So
they took the test again and theywere the numbers were even higher than it
should be. They were off thecharts and something was wrong. And so
we had been in the hospital inthe er for about a few hours then
and something just the doctors like wewere coming around and like they tend to
leave again and like I got IVSand all this stuff, and they had
an EKG in my room and likeI was like, we didn't know what
(03:52):
this was. And so the doctorskept coming in and out, and my
mom stopped one of them and shewas like, what is going on?
And he said, well, we'rewaiting for the chaplain and she was like,
oh my God, like the chaplainlike, what's going on, Like,
what's wrong with my baby? Anda friend called who worked at the
hospital and she was like, daughter'snumbers came across my desk leukemia. And
so my mom was like, okay, okay. So she prayed on the
(04:15):
phone with her and she's like,okay, like this is the beginning of
something, like God, please bewith us through this. So she went
to the doctor's finally and she's like, look, I know what it is.
It's aukemia. And they were likevery confused, like how do you
know. So then she's like,I want to be able to tell my
daughter what this is. And upto that, they had done a scan
(04:36):
on my heart as well, andthey found out that there was a mask
growing around my heart and choking myarteries and that I shouldn't even be laying
down, so they had me proppedup so that my lungs wouldn't collapse because
the mass is so hard and sobig. And so my mom came in,
she came to the er room.She said, Haley, it's leukemia.
(04:57):
And I didn't know what leukemia wasat the time. But I knew
what didn't sound good, and Iremember just sitting there and breathing and saying
and that's how I found out.And then I was in the hospital for
a month, and that's what startedmaking the therapy journey. And and a
half years later, I'm now doinga lot better. You remember a lot
more of your story than I do. But the first parts of our diagnoses
(05:23):
were really quite similar. Actually,I spent a lot of my time throwing
up and getting sick. This kindof came out of nowhere a week prior
or two weeks prior. I supposeit's my diagnosis. I was as normal
a kid as any, and thena little over a week before I started
noticing like stomach cramps, pain inmy guts. It just slowly got worse
(05:47):
and worse, and my whole familywe thought it was food poisoning, and
we went to the doctor, wentto the er, and they didn't really
they couldn't figure anything out. Theywere just like, Okay, well it
seems like you've got some digestive problems. You're dehydrated, so we'll give you
some fluids. And so they gaveme ivy fluids and they sent me home.
(06:08):
We knew something was still wrong becausekind of like you, I wasn't
eating at all, and I wasstill growing. I was expanding outward from
the mill, and they knew thatsomething definitely wasn't right with that. Stomach
pain was getting worse, you know, I was throwing up, always nauseous.
I was sitting up all night,and I curled in a ball just
because of the pain in my gut. And so we eventually went back into
(06:31):
the er a second time. Andthe first time, when they decided that
I was just dehydrated, they'd donesome scans, they didn't find anything.
The second time they did more scansand they discovered that there was a mass
and that's when they were like,okay, well this is bad. That's
not supposed to be there. That'snot an organ, and they sent me
(06:53):
to the hospital straight from there.It was really fast. Everything happened like
immediately right on top of it,right on top of the last thing.
So we just went to the hospital. We were not prepared at all.
We thought we were going to theer. They were gonna tell me I
had, you know, food poisoningor some sort of intestinal issue, and
give me some sort of you know, quick medicine to get rid of it,
(07:14):
and I'd be on my way,and then I wasn't. We were
rushed to the hospital immediately. Iwas taken by ambulance and my chemotherapy started
that day. We were just immediatelyin and we didn't even have a chance
to pack the toothbrush, which whichwould become a thing pretty quickly after,
because we weren't, like I said, not at all prepared. The whole
(07:35):
family was there because you know,holy cow, you have a mass that's
growing that you're not supposed to have. So nobody's you know, leaving to
go home. Everybody's there kind ofpanic mode. I was sedated, so
I've got I've got little flashes ofmemory. That's scary. I mean,
like not knowing what's going on withyour child or for you, like not
(07:56):
knowing what's going you just don't feelwell. So what I've heard in so
many stories is that like people don'tknow what's going on, people don't know
what's wrong with you, but justsomething isn't right. You're not acting like
a kid anymore. You're just notdoing something right. And I feel like
that was so scary, especially evengetting a diagnosed was just realizing you're kind
of going to start losing your likejust for this time, losing your childhood.
(08:16):
You have to take so much timeout for chemistry. Certainly everything changes.
Some of the worst things for treatmentwas losing my hair. I mean,
as a girl like had been,I had long, long hair,
and spending that first month in thehospital, my hair started falling out.
And I remember about a week inI started chemotherapy the day that I found
out. Those first two nights inic you were probably some of the worst,
(08:37):
just fighting for my life. Iremember my mom was just praying over
me, and when she stopped praying, I set the alarms off, and
like the oxygen was going off.I mean, like I couldn't even lay
down because just the cancer was reallytaking over my body. And when I
was first diagnosed that first night,I had ninety nine to one hundred percent
cancer cells in my white blood cells. So it's just hard to realize all
(08:58):
this stuff is going on and everybody'sworried for you, and sometimes at those
points you didn't even know if you'regoing to make it through the night.
I mean, like that's something real, like it's just all coming in so
fast, and my mom had towatch her baby go through that and she
could do anything to help. Ifeel like that's something that parents have to
go through is so hard for them, is having to watch their child go
through something but they can't help.Like if a kid is hurting, like,
(09:22):
they want to be there, theywant to hug them, and even
in that hospital bed, sometimes theyjust can't be there and they can't take
that load for them, and that'sreally hard for the parent. For me,
like just laying in those hospital rooms, especially the first month was just
seclusion. And even I had twoand a half years of chemotherapy, so
that was just a lot of seclusionand just missing out and it was scary,
(09:43):
not knowing if I was going tomake it through that, how is
the cancer going to react to thechemo, And how is this next scan
gonna go? How is this nextblood test gonna go. Sometimes it's just
overwhelming and it was hard at times. I feel like that's something that not
everybody can relate to. And whenyou're diagnosed, people are oh, I'm
sorry, I'm so sorry to hearthat. There was so much I'm so
(10:05):
sorry to hear that. I'm prayingfor you. Oh, we'll be there.
For you, and it isn't alwaysthe case. People couldn't relate.
Honestly, I feel like I wasextraordinarily lucky with my cancer. I know,
sounds like a really weird thing tosay, you know, I'm so
lucky to have the cancer that Ihad because it was so aggressive. I'll
say that to people and they'll belike, what, Well, I got
(10:28):
super lucky because the aggressiveness of thecancer meant the treatment had to be equally
aggressive and they knew how to dealwith it. You had to suffer for
two and a half years. Igot so lucky. I only had to
deal with it for four months.I mean, I'm so incredibly grateful honestly
that that's all that me and myfamily had to go through. I honestly
(10:50):
can't even imagine. And you're talkingabout like fear every night that you might
not wake up the next morning.For me, that wasn't something that ever
really clicked somehow. I don't knowif it wasn't because I was there,
if it was because I wasn't therelong enough, or just because I was
always sedated and so I just didn'thave the time to think about it.
For me, really, the mostfrightening part was that, like it was
(11:13):
just continuously some part of my bodywas always failing. Something was falling apart
at every moment I would I would, you know, go to sleep for
the two hours of sleep that I'dget at a time, and I'd wake
up and something else was wrong.You know, I can't feel my leg
I physically can't eat I you know, my head feels like it's about to
(11:33):
implode. You know, it's justalways something new. And that for me
was the scariest part. It wasn'tthe worst thing, but you know,
it is scary. I mean therewasn't just like you know, not knowing
if you're going to wake up,but also having to worry about like what
the next round of chemo was goingto do. Because I had a really
bad problem with steroids, actually justhaving shaking, it was going through withdrawals.
(11:54):
I had steroids once a month,so I'd get on steroids and I'd
be hungry all the time. Yeah. I wait for seven point thirty to
order my breakfast every morning in thehospital, and I ordered my breakfast.
I ordered my mom's breakfast and thenI eat her breakfast. Yeah, that
was one good thing. Steroids.Oh, I became a really good cook
on steroids. I watched way toomuch food nowwork. Yes, I did
(12:15):
the exact same thing. I wouldwatch the Food channel on the TV.
I remember specifically one time somebody madethis chicken nugget, bacon, lettuce burger
thing. I was like, thatlooks fantastic. So I pull up the
food ordering menu and I order chickennuggets, lettuce, tomato sauces and like
a hamburger. I took the bunsand I made that what I just saw
(12:35):
on the TV. Like, youknow, it's hospital food cooking, but
it's finding simple joys when you're inthe hospital, yes, which can be
hard but really important. Like lookingfor those things in the hospital. It
could just be going to the playroom, or sometimes you can't leave your
hospital room, so it could justbe having that time with your family or
just sitting and having a conversation.And one thing about that being in the
(12:56):
hospital for so long is that you'reto be You're gonna become closer with that
person who's with you in It couldbe a parent, it could just be
a nurse sometimes that you just youbond with them. And that's one gift
that I got with my mom,especially was that in the midst of all
this trials, I became so closewith my mother and so close with the
Lord because I had to learn,okay, like this is hard. Who's
(13:18):
actually who's there for me? Peoplewho are there for me? Prove that
they are. They're true, they'rereal, like they're good friends, they're
an amazing parent because they're there foryou. They're there for you, and
I think that's really important because noteverybody is going to be there for you.
The reality is like they might bethere for you when you first get
diagnosed, they're gonna be oh mygoodness, like you know, I'm so
sorry to hear that. You know, we're gonna they'll maybe cook you a
meal. I had people cook melike a meal the first few weeks at
(13:41):
the hospital. But I mean twoand a half years is a long journey.
People kind of you know, likethey keep on moving on with their
life. But the thing with canceris your life is put on pause,
like your life is you're trying,you're just fighting to save your life,
and you're just fighting for your life. It's that's what's important in that moment.
It's sadly not focusing on the greatas a childhood. It's hoping that
you have a future. There's youmentioned that people will be super like helpful
(14:07):
during the first few weeks, maybeeven a month your treatment, and even
in you know, my four monthsof treatment, in a couple of months
of like quarantine, post treatment,I saw the same thing. You know,
people and it's nothing, nothing againstthem at all, but you know
they come to support you at thebeginning. And you know, people have
have their own lives to deal withtoo, and they can't they can't be
(14:30):
there the whole time. There thereare some people who will really make the
effort. Those those are some ofthe people that, like I saw a
lot of what truth of the peopleI hung around with was because you know,
when when this happened, you know, the real side of people comes
out when they when they see somethinghappening to someone that they know and do
they just like, oh, whateverit's happening, it's none of my none
(14:50):
of my business. Or do theycome to try and help you, And
kind of it's almost a blessing tobe able to see what what people are
are really like, you know,how they how much they really care about
you. There there are a lotof little blessings too. There's a lot
of there's a lot of awfulness toit. You know, anybody, anybody
who's experienced it can agree that canceris no fun. It's it's pretty pretty
(15:16):
terrible, but there are lots ofyou can find lots of little blessings.
I think that's a really important thingto remember. That's a really good I
love that that, Like, eventhough it's really hard. That's one thing
that I want people to know isthat it's gonna be hard. That's not
something a lot of people say.It's just like not something you might want
to realize, but realizing it's gonnabe hard, but there are people who
are gonna help you get through it. And sometimes it's just realizing okay,
(15:39):
like it's a hard moment. Yeah, like you need to cry. Sometimes
it's gonna be a long journey,but know that lean on the people who
are there for you. And onething that really helped me was my faith.
Is that not I know not everybodylistening might believe in God or all
that, but I promise you,like there is someone there who's there for
you. And I really truly believethat that firm foundation of faith helped me
(16:02):
so much through it, and thatknowing that, like there was someone there
for me who loved me, whowas caring for me, and had a
purpose and a plan for my life. And that's one thing that helped me
get through it as well, wasknowing, Okay, this bad thing happened
to me, What am I goingto do about it? Am I just
gonna like? Am I just gonnabe sad and cry about it and just
like say, oh woe is me? Or am I going to be like?
Okay, like this bad thing happened? And so now share my stories
(16:25):
with other people and be all light, be joyful even in the midst of
trials, because everybody's going to behappy when things are going good. But
who are you going to be whentrials do come your way? Absolutely,
you know, weaknesses are revealed andsuffering that sorry your strength. I hate
to be repetitive, but finding thebest parts of all the suffering that you
go through is really so important becausethe suffering itself can be a blessing because
(16:48):
of everything that mind's out of you. You know, your diamonds are made
under pressure. That's exactly what Iwas going to say. You know,
there are so many sayings I couldgo on and list tons of them.
But you know, graph at point, graphight isn't important. Graph makes pencils.
But yeah, exactly, like graphiteisn't important, like nobody wants a
graphy and makes pencils. Yeah,but that pressure, that heat, like
(17:11):
that's what makes it important, Thatmakes what makes beautiful is that if we
don't go through those trials, weregonna go through those hard things, we're
gonna stay graphit. I think alot of people ask why me, why
did this happen to me? Yes? And I mean it's hard because you're
watching everybody else they're doing good,like this doesn't happen to me. This
happens especially childhood cancer, like Iwasn't smoking, I wasn't doing all this
stuff, like the child didn't.Like sometimes it's hard because you're doing everything
(17:34):
right and it's just it's it's reallyeasy to wonder like why did this happen
to me? And it's hard.Yeah, sometimes I have question. I
think it crosses everybody's mind, likewhy me, why did this happen to
me? This happens to this happensto older people, This happens to other
people. It doesn't happen to me. It doesn't happen to people around me,
but sometimes it's like it's it takesa while. I think even for
(17:55):
me, it took a time toaccept it, like okay, this is
reality now, but taking that andlike okay, this isn't new normal,
okay, So adjusting to this andrealizing these are the things that I once
took for granted. And realizing thingslike hair or like you need to go
hang out, or just sometimes foodsometimes you couldn't eat on the steroids or
stuff like that, Just like realizingwhat's important and just realizing the value of
(18:17):
things. It's so important now,just the simplest things. It doesn't pass
you by. My pickiness for foodwent down a lot during cancer, between
the between the steroids and the factthat every other week everything tasted like chemotherapy
drug after tastes my only h what'sthe word here, We'll say qualification for
food is that it doesn't taste likechemotherapy medicine. At this point, it
(18:42):
doesn't have to be the best,because now I'm just grateful to have food
that you know, tastes like food. I'm curious your hair, did you
shave it or did it just follow? Did you do did you do shaving,
and then that did you play aroundwith hairstyle? That was the thing
that helping me cope with losing myhair, especially as a girl, is
like, you know, like lotslike all the girls like they had their
(19:03):
pretty hair, they have like curledor braided and all that. So when
it first started falling out, Ithink I just kind of let it fall
out. I mean I was inthe hospital for a month, so that's
like the whole time my hair waskind of coming out, and it got
really really thin. I remember juststanding I had been quarantined in my room,
couldn't even leave my room for aboutand I was just standing in the
bathroom mirror brushing my teeth, andI was there with my mom, and
I was looking in the mirror andI started getting the moon face, and
(19:26):
my hair was thin enough that youcould just see my head. And I
just looked at myself and I waslike, I don't even recognize myself,
Like I just look so different.I don't look like myself, Like I
look like I look like I havecancer, which I did. And that
was that was, I think adefining moment, and I don't think that's
something I'll ever forget. Is likelooking at myself in the mirror and realizing,
(19:48):
Okay, I'm losing my hair.I'm getting the moon face, like
the it's all coming in. Andthe first time I lost my hair.
I lost my hair three times.It came back earlier every time. The
first time, I let it stayvery very very very thin for like two
months, and then I cut it. I just kind of shaved it off
(20:08):
after it was very very thin.But that's how I kind of coped with
it. But I think people copewith it in different ways. I think
I should I recommend just kind ofshaving it off. You don't have to
deal with all the hair falling outeverywhere. I was like shedding like a
cat. Yes, yeah, Iwould wake up every day out of my
hospital bed and just hair all overit. I remember the first thing I
(20:29):
did was I got a mohawk.Yeah, because I was like, my
hair's falling out anyway, I mightas well have some fun with this.
So I buzzed the sides and gavemyself a sort of mohawk like Hawkeye.
And that one was an endgame.I think. I don't know movie references
that I don't remember anymore, Butthen you know it kept falling out,
(20:52):
so eventually we had to shave it, but it was a little fun while
it lasted. And kind of gofrom that hair thing and talk about something
else that I want to talk abouton the podcast here, and if I
were to give a piece of adviceto parents or really anybody going through this
experience, the parents or the kids, it's something that we've mentioned a few
times in the podcast, and that'sreally this cancer. You know, it's
(21:18):
it's here, and it's it's goingto happen. And at this point though,
it's the doctor's job to deal withthe cancer. And now your job
is to make the best of thetime that you have because, you know,
Haley was mentioning, you know,you don't know. Every day you
go to sleep hoping that you're goingto wake up in the morning, and
you don't know. So every moment, every moment, is precious and spending
(21:42):
spending the time that you have,you know, worrying about all the little
details and about what the doctors,what the doctors are doing, and what
the doctors have you have. Youonly have so much time, and me
there are better ways to spend itthan worrying about the things that you can't
control. I think it's best totake all of the opportunities that you have
to spend quality time with these peoplearound you, to get what you can
(22:04):
from the moments that you have,because you don't know how many you have.
This could be a great opportunity togrow through experiences, through the suffering,
through you know, learning from thesepeople. And still you know you
have to make the best at everymoment. So what what is out of
your hands? Worry about it?Yeah, there's nothing you can do,
So spend every moment that you canmaking the most out of the time that
(22:27):
you have. I learned to lookfor the little things and that there's you
can find so much joy. Imeant all the struggles that it's going to
be hard, and there are somany days, but I just laid on
the floor and cried. But whatI remember, I remember those hard times.
What I also remember is my momcoming and hugging me, or my
dad just saying we're going to beso close to this, like becoming close
(22:48):
with my family, especially my mom, but also my dad and my brother.
Like I gained so much from goingthrough cancer. I know that's really
hard to say, and in themoment it did not feel like that.
But going back, I look backand I'm like, Wow, look how
faithful the Lord was. Look howfar I've come. And if I was
given the opportunity to never have togo through this, I know it's kind
(23:11):
of hard to say, but Iwould still choose to go through all that
hurt and pain because of the personthat it made me that I am so
much stronger because of it. Iknow how far I've come, and I
know the value of so much moreand I've gained so much wisdom from that
I'm different from the people around mein a good way, and that it
is it's hard. I think I'vesaid that so many times because that was
(23:33):
something that I wish people had toldme. And that's me I wish parents
knew, and that even the kidknew. Is that it's a long journey,
and that don't try to live tillthe very end, just live till
every day, live every moment,and that you don't know what tomorrow olds,
but just love, love every momentand if there's gonna be hard moments
and there's gonna be good moments,but just know that you can get through
(23:56):
this. And there's so many peoplewho are there for you, and that
there's a whole community who knows whatyou've gone through and can talk with you
about it, and that finding thatcommunity is also really important, finding those
organizations who are reaching out to kidsin the hospital or to the parents that
sometimes it's hard to be like,oh, like I want to do it
myself, like I think I can, I can do it, but you
sometimes, especially in these moments ofhardships, you don't have to carry those
(24:17):
burdens. That there is such awhole community that's willing to help you and
carry it with you. And Iwant to leave everybody listening to the podcast
with knowing that there are people therefor you and we know what you're going
through. Thank you for listening onthis week's episode of a Conversation with Kids
Beating Cancer podcast. Other links willbe down below into description, and you
(24:38):
can visit us and donate at WKCdot org backslash donate. That's WKC dot
org backslash donate. Kids shouldn't getcancer. When they do, you can
help. See you next time.
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