July 8, 2025 • 35 mins
🎙️ Season 2 is here! And we’re kicking things off with a powerful, heartwarming episode of Conversations With Kids Beating Cancer.
This time, our former guest Ava takes the mic—and she’s not alone. She’s joined by her friend Autumn, a fierce warrior who was diagnosed with Acute Lymphoblastic Leukemia (ALL) at just 11 years old. Now, six years later, she’s sharing her journey as a survivor.
Together, these incredible young women open up about what it’s really like to face childhood cancer and even share a few laughs. 💛
Tune in for real conversations, resilience, and a reminder that hope is stronger than cancer.
Presented by Wipe Out Kids’ Cancer.
Kids Shouldn't Get Cancer But When They Do... YOU Can Help!
Visit wokc.org/donate to donate today.
Make sure you follow us!
Instagram: @wokc
Facebook: Wipe Out Kids Cancer
X: @wipeoutkdscancr
This time, our former guest Ava takes the mic—and she’s not alone. She’s joined by her friend Autumn, a fierce warrior who was diagnosed with Acute Lymphoblastic Leukemia (ALL) at just 11 years old. Now, six years later, she’s sharing her journey as a survivor.
Together, these incredible young women open up about what it’s really like to face childhood cancer and even share a few laughs. 💛
Tune in for real conversations, resilience, and a reminder that hope is stronger than cancer.
Presented by Wipe Out Kids’ Cancer.
Kids Shouldn't Get Cancer But When They Do... YOU Can Help!
Visit wokc.org/donate to donate today.
Make sure you follow us!
Instagram: @wokc
Facebook: Wipe Out Kids Cancer
X: @wipeoutkdscancr
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:12):
Hi, yone, it's Eva and welcome back to Kids Feeding Cancer.
I'm here with my best friend Autumn.
Speaker 2 (00:17):
It's nice to be here. Thank you for having me.
Speaker 1 (00:20):
So we both had cancer. Ours were very different though
you had yours when you were.
Speaker 2 (00:27):
I was eleven when I was diagnosed.
Speaker 1 (00:29):
I was thirteen, so she was much younger. So she
had a little bit of a harder time because and.
Speaker 2 (00:34):
They were also very different types of cancer, which I
feel like you to that difference in treatment and experiences.
You have a cute lymphoblastic leukemia so AL, which is
the most common childhood cancer to be diagnosed with.
Speaker 1 (00:50):
Wait an explain it for the people who don't know
what that is.
Speaker 2 (00:52):
Okay, So it's essentially a blood cancer. I mean not
essentially blood cancer. It is a blood cancer where you
or white blood cells are premature and then they go
into your body. But because the like regenitive like things
are just multiplying, which leads to you know, cancer. So
that's fun. It took me about four months to get
(01:16):
diagnosed by the time I was experiencing symptoms and uh yeah,
so here we are about six years later, and it's
been a journey.
Speaker 1 (01:28):
So yeah, and you had I had bone cancer like
some ings viewings are cola basically just made my bone
very brittle. So I mean, very different, very different experiences.
Chemo journeys were very different. You had radiation, no, okay,
so that's something we experienced. We both didn't have radiation
(01:51):
just long when was nine one's humo.
Speaker 2 (01:55):
I had two and a half years, okay, so yours
was much much longer.
Speaker 1 (01:59):
Yeah, how did that? You were in the hospital the
whole time?
Speaker 2 (02:04):
No, so for mine. Because it is a blood cancer,
they don't know what part of your body it's in,
and there's a danger of it getting into your spinal cord,
it getting into your brain like stem, and so because
of that, the protocol is to do two and a
half years when the time at the time I was diagnosed,
if I had been a boy, it would have been
three years because who knows why. Apparently women are just
(02:27):
more petite and don't need as much. But now it's
gone down. The protocol is just two and a half
years across the board for everyone, but just to make
sure that you're getting all the cancer cells out and
there's not a chance for reoccurrence because the cells could
be anywhere or in any organ and you don't really
know because blood is everywhere in your body, so that's fun.
Speaker 1 (02:47):
When you're in the hospital. Was there a certain thing
you did.
Speaker 2 (02:52):
I napped a lot, and my mom and I would
watch Adam Sandler movies. I think you watched all of movies.
I was like eleven or twelve at the time, which
I mean isn't like a bad age to watch those.
It was just like I was so excited because I
was like, oh, these are like not kids movies, and
like I was like they were fun. They were just
(03:12):
little rom coms and stuff. But I very vividly remember
either just like napping or watching movies with my mom,
which was fun.
Speaker 1 (03:20):
Okay, since you were eleven, what was friendships like like
school friendships?
Speaker 2 (03:25):
Okay, that's honestly. I was a kid who didn't have
like a big friend group. And fifth grade was like
the first year where I was I'd been in the
same school most of my life, but it was just like, dude,
to like the way my classes were, and like I
would like started a bunch of new extra curriculars. I
was in like this extra choir. I was doing theater.
(03:48):
That was like the first year where I kind of
had like friends who I was like hanging out with,
like on the regular. And that's I think part of
why I was just like so upset when I was diagnosed,
Because I was diagnosed February eighth, twenty nineteen, which was
like a Friday, and I was like, oh, like do
I get to go back to school and like say
(04:09):
like like you know whatever, and they're like no, like
you're being admitted to the hospital and like an hour
and a half, like you aren't going to go back
and see your friends. And so I think from like
the time I was diagnosed, hims in the hospital a
week and then I didn't see anyone else I really knew,
like she was my age at least until like March,
(04:31):
like late March April, for like a field day thing.
And the only reason I was allowed to do that
is because it was outside, so I wouldn't get all
the germs that are floating around indoors, you know, and
I was very isolated. My immune system was effectively zero
at that point. I didn't really see a whole ton
of people my age, except like my brother, which I
(04:52):
love him to death. We are friends now, but for
a hot second there, I was just about ready to
kill the dude. He was great and he held his
own but yeah, it was a lot. But no, I
think that's part of it is because it was two
and a half years. I was so isolated from everyone,
(05:12):
and I was in and out of the hospital anytime
I got a fever, which anytime my immune system tanked,
which again was pretty much at any point in treatment,
I would develop a fever. And if you have a
fever at all, you're in the hospital two days. Make
sure you don't like it's I was so all over
the place that I didn't really see a ton of
people I knew until I was allowed to go back
(05:34):
to school in like by Christmas, I think, so it
was like about a year and then that was twenty twenty.
So about two three months later, COVID hit and I
was isolated again because as someone with who had some
sort of an immune system but not a great one
and not a here's a new disease that's everywhere in
(05:57):
the pandemic, and so I was isolated again. But I
didn't see a whole ton of people, but afterwards a
lot of friends so I knew, like before that and stuff,
I'm very close with them now and like, yeah, but
it took me a bit to get used to, like
the socialization part afterwards, just because you haven't seen anybody
and you haven't interacted with them, and it just felt
(06:19):
very awkward and distilted, which I feel like isn't talked
about enough because it's like, here's this thing that you
went through, this was your life for the past year,
six months or more than a yearnest.
Speaker 1 (06:29):
Likely no one can relate.
Speaker 2 (06:31):
So it's like, yeah, no one who I knew was
like really there on that journey with me outside of
my family, and at that point, I'd been only seeing
my family for about two years, and I was I
didn't want to talk to them about everything, So it
was hard. But I'm close to a lot of people
who like are luckily able to understand that part.
Speaker 1 (06:52):
Now, Yeah, you've felt a lot of people now that
a lot of people like you know and talk about it.
What we're talking about. We both went to Middleical City
and they have this little program where you can get
to camp and you get to talk and basically share
all your stories with people who went through treatment. Gone
through the treatment. Some of our best friends we know
(07:14):
have gone through the same struggles that we have. We
just it just have closer bond than just like your.
Speaker 2 (07:19):
Friends at school wout out camp. I hope, love y'all,
love y'all.
Speaker 1 (07:24):
Okay, I feel like this isn't touched on enough. What
were like all the things that changed, Like for me,
my taste buds change. I couldn't eat anything, but also
certain smells triggered me. What were the smells and tastes
the trigger too?
Speaker 2 (07:40):
Anything like plasticky like there was on the railing on
like my bed in the hospital, there was like this
plastic cover over the like what a blood pressure monitor,
And genuinely it like made me so incredibly nauxious and
even now, like anytime I smell it, like just it's
(08:01):
like the plastic smell smell anytime I treatment. If I
smelled that, I was instantly like nauseous.
Speaker 1 (08:07):
It was disgusting. Like random triggers, You're like, I wouldn't
have triggered me before. It's like a random Like.
Speaker 2 (08:13):
No, my mom had like this hand soap that I
couldn't stand that. I was just like, why do you
smell like that? Like these like wash your hands. I'm like, no,
don't don't come near me, don't wash your hand, like stop.
Speaker 1 (08:25):
Washing your hands, just don't wash your hands in general.
Exactly for me, it was that weird like metallics like
smell from the hospital. I don't know what it was,
but it was just like this like metallic medicine smell,
like I had to just I just couldn't do it.
But then in the hospital, we're at that cafeteria downstairs.
(08:49):
I would have to plug my nose in sprint across
the caffeteria because I couldn't deal with them. It was
like this weird smell. Still to this day, I have
to plug my nose and I tell the mo I'm
like one G three go like we both sprint to
the elevators. I'm like, I just can't.
Speaker 2 (09:02):
I can't stand it. You can't, I will say, taste
bud wise. I know that I started like craving citrus
while on treatment, And if you know me in person
or just know me in general, you will Lemons are
obsessed with lemons, and this is where that stem from.
She'll eat a lemon, I've seen I will eat a lemon.
(09:23):
I have Lemon water is superior to normal water. Anything grapefruit, lime,
lemon flavored, lime flavored desserts.
Speaker 1 (09:32):
It's the unhealthy obsession, gets her water bottle and she'll
be like, does anyone have any lemons on them? Or
like she'll go to the tunic. All the lemons you have,
just give me them.
Speaker 2 (09:41):
Shout out if you're obsessed with citrus, true lemon lemon packets.
Those things are crystallized lemon and they taste like lemon
juice for them in the water.
Speaker 1 (09:49):
Did you know what taste like lemon juice? They do
taste like lemon juice at It's Deli, she told us
all She was like, yeah, it's like lemonade, no smell,
macro water just like lemona. It tastes like just straight lemons.
That's exactly how I like it, though, No but no sugar,
It just just lemon.
Speaker 2 (10:09):
I was just like creeping that citrus. I don't know
what it was. But something about like the chemo.
Speaker 1 (10:14):
Just like the chemo just messes with you because I
feel like a lot of stuff that you'd.
Speaker 2 (10:18):
Liked before it just isn't the same anymore.
Speaker 1 (10:21):
Rice for better taste like cardboard. Couldn't do rice anymore.
I couldn't do chicken casadios I that's that. I don't know.
I had them the hospital and then I just can't
do it anymore. Every time I eat it, I want
to throw up.
Speaker 2 (10:35):
Did you ever go to the Anissa Tacos Anissa's Tacos
down in Media City. I had to always order it
like I could not, Like I was obsessed with like
KFC mashed potatoes for a while.
Speaker 1 (10:47):
I hate I couldn't do mash potatoes. It was like
the texture for me every single time I ate it,
Like during treatment, I was like this texture texture was
also weird, thing like blankets like different services.
Speaker 2 (10:58):
I like, you're just your skin was so sensitive on treatment,
Like it was weird.
Speaker 1 (11:03):
I ever I go because I couldn't deal with like
the hard word surfaces. It's like something of just like
my feet on it.
Speaker 2 (11:09):
I was just like yeah, yeah, like so gross to me.
Speaker 1 (11:13):
And my mom would always complain. She'd be like, you're fine,
it's just what I'm like, like it feels like someone's
about to like rip my feet off. Was like, don't
even start with me. It was like give me some slippers.
Speaker 2 (11:22):
I'm like no, I feel like the way you're feeling
while on treatment and even like post treatment, because there
are those like long term side effects that come with it.
You just every five minutes, you're feeling some sort of
like new sensation like oh, you're nauseous, but then the
next minute you're like ravenously hungry. Like I would literally
like threaten my mom, like no, I need a Costco
(11:44):
hot dog right now. I will kill someone if I
don't get a Costco hot dog right now.
Speaker 1 (11:47):
It's also it's like still like the real thing. It
was like I'll get like I'll be like it was
like that, but then I'll get the food I want
and then I'm like, also not hungry anymore. I was like, actually,
can you take this sway from me? I was like,
I don't eat it. My Dad's like I just paid
forty dollars for you to get this food, you better
eat it. I'm like no, I'm just like really no hunger.
And I was like can you just like you know,
he's like what am I supposed to do with this
(12:08):
for you? Or you know, I'm like, you can eat it,
save it for later.
Speaker 2 (12:12):
The next time I changed my mind.
Speaker 1 (12:15):
I was like, it was like, I mean you can
say that. I was like, I'm probably not gonna eat it,
Like you're probably just gonna crate something else. You're gonna
have to go get only for me, do not eat. Sorry,
I'm not sorry speaking of parents who stayed with you,
because all the time, because I was diagnosed during COVID,
we can only have one parent stay with us.
Speaker 2 (12:35):
So well, okay, my mom was the one who stayed
with me mostly during treatment, but up until obviously COVID
hit and the policies changed, and at that point I
really wasn't in the hospital for like treatments anymore. I'm
I was just in and out of the clinic itself.
Both parents could be there, so my brother came and
(12:56):
visited me a bunch like my parents. Both my parents
would be there. I had a lot of family come
because they're like in the area, which I always felt
so bad about because I was like which obviously like
you never sorry, you never experienced I'm so.
Speaker 1 (13:08):
Sorry, but I couldn't see anyone but my one parent.
That one parent would do my mom because if my
dad's back, you like couldn't sleep on like the couch.
Speaker 2 (13:18):
Or like awful, I will say, like they treat them
like they do their best with like the patients and
the caretakers.
Speaker 1 (13:27):
All they don't care less about their parents, Like your
parent has a stick with you, but they're like, no beds,
like you did either sleep on a couch or you
have to bring your own.
Speaker 2 (13:35):
I will say, like caretaker support especially through that process,
Like and it's so weird from like a patient standpoint
because I'm like, oh, no, like this is this thing
I experienced. But then I'm like, no, my entire family
experienced it. My mom, my dad, who are dealing with Like,
caretaker support is so important, and I feel like that
just like really needs to be emphasized because even in
the little things of like this bed freaking sucks, somebody
(13:56):
give me a comfy couch to lay on, like type thing.
Speaker 1 (13:59):
I don't know who it was, but my mom like
when I was a minute into hospital, like someone reached
out to her and was like, hey, my kids on
treatment anymore. But like I use this Arab mattress and
it basically saved my back and my shoulders and my neck.
I'm going to give it to you, like you're gonna
need this. Oh, I would absolutely recommend an air matchss
and she I mean literally sting on the air mattress
(14:19):
and like it literally chok out the whole room. It
was bigger than my hospital bed. It was so big,
and at one point, like some point in time, because
like the hospital bed is so uncomfortable, I would I
would take my ivy pool that I would go over
to her inflatable mattress and sleep on it. And then
she would be like, okay, I need my bed now,
(14:41):
like please get out, Like like no, what.
Speaker 2 (14:44):
Like did you ever ask for like the egg create
thing that they can like the mattress protect her, Like
not mattress protecting, but like the extra like mattress pad
that goes on top of it.
Speaker 1 (14:54):
I think, is it like a little foam. Yeah.
Speaker 2 (14:56):
But then it's like, well they had like this this
stick from the hospital.
Speaker 1 (15:00):
Yeah, No, I did bring my own. It was like
this thick because like literally no less than an inch stick.
She's talking about one that's probably like five inches stick.
That what she just showed me. I'm sorry I had
to brain one that was literally INTI did nothing for me. No,
they need to say what I bring to camp.
Speaker 2 (15:15):
It's itty bitty. I'm so sorry for you. No, I
will say I had so many joint issues, like my
back hurt, my neck hurt, my limbs hurt. Like I
was just so uncomfortable anywhere I slept so every time
I would be admitted to the hospital, you have to
ask for that extra thick like mattress extra like I
don't know, mattress pad. And then I got one from
(15:36):
my own house. I got one for my own bed too,
because I was like a little extra support when you're sleeping.
Speaker 1 (15:42):
I never got to camp because those mattresses are hard.
I wish I would have known that, because I think
I would like hack. I don't know what it was,
but I never heard. I know I always asked for
us extra blankets. But you know those are like literally
like paper thin.
Speaker 2 (15:58):
Sheets of paper and when they're warm, though those are
so nice, then.
Speaker 1 (16:02):
They like cool down in two seconds. We can I
get a warm blanket. By the time they bring it
to me, it's cold. I'm like, can I just go
get it myself, Like I'll just go get it so
that way I just have two seconds of warm before
it goes cold to get.
Speaker 2 (16:16):
Back around yourself then put it right back in.
Speaker 1 (16:18):
I know, I just I want that level blanket heater
from my own blankets. But I feel like you can
just get that health blanker I'm afraid of about. I
put it in my like soft little blankets and then
it'll like fried up and whiles in my house is
on fire. Mm hmm. You never know, ify, I don't know.
Oh what else did you experience during tamen or anything weird?
Speaker 2 (16:42):
Oh okay, because you had a port.
Speaker 1 (16:45):
We both had ports, yeah, or throwing two different locations.
Speaker 2 (16:48):
But yeah, I will say I was so upset because
when you have a port, the risk for infection is
obviously very high. It's being access like whenever you're getting
treated it. So it's kind of just like this wound
that you have all times, which is it's obviously a
miracle of medical invention type thing. It is so helpful
(17:10):
and I'm thankful for it every day. You can't play
on your stomach, you can't lay on, you can't land
on your front. It's so uncomfortable. It feels weird. It
feels like I'm part robot.
Speaker 1 (17:19):
Now there's like it does something with it. It's like
even though I don't have mine, it's like a bum.
Speaker 2 (17:26):
No, Like there's like scar tissue there.
Speaker 1 (17:28):
It's so uncomfortable, Like there's like literally just like a bump,
but it won't go in. They're like, oh, that's just
a tissue, Like okay, how do you get rid of
that tissue.
Speaker 2 (17:34):
Well, I was upset because when you have the port
and just in general, like your immune systems nothing, so
I couldn't go in links and rivers and they're like
swimming in community pools. And I'm someone who like I
enjoy it good swimming, a good lake, I say, because
it's a private pool, but community pools because my own
private pool, and not that I would want to go
(17:58):
on my hus pool. That place is disgusting. I'm not
that this little toddler swimming around.
Speaker 1 (18:03):
No, well, when we need each other back then.
Speaker 2 (18:07):
That but my parents decided, like the second summer I
was on treatment, that it was a brilliant idea to
get this like foat club membership where you would like
pay so much money and like then you could like
take out books for the day or whatever. Right, Well,
that was great for the people who could go in
the lake and who could go inner tubing and go swimming.
(18:27):
But I was only permitted to sit on the boat
and fish. I couldn't swim. I couldn't go tubing. And
my brother and his millions of friends are out there like,
oh my god, guys, I just flipped out the inner tube.
How awesome? Was that, And I'm like, you're like, no,
these guys really appreciate that. I was very upsety spaghetti
about that one. But it was great once I could
(18:51):
go swimming.
Speaker 1 (18:52):
But I know, I don't think I went to a
lake at all during my time, but I guess mine
wasn't even a year long, so I mean, well, my.
Speaker 2 (19:00):
Family's also just like a lake family, like if we're
gonna go swimming, like it's like you would normally go
to lakes.
Speaker 1 (19:05):
But uh, I can't imagine. I mean just I was
jealous of people who had hair. I can't even imagine,
like being jealous of someone who's like you're like sitting
on a boat just like watching me all the delts
with the people who had hair.
Speaker 2 (19:16):
Don't get me wrong.
Speaker 1 (19:17):
I'm like, I'm watching like all these people at my
school like putting their hair up into a pennytail and
like swishing it around while they walk. Maybe here's my
bald head. I'm like, can I cut your hair? It's
like can I Actually, I'm just gonna cut it, Like.
Speaker 2 (19:28):
I look at that oddler with my like even whenever
I didn't have hair or then like once it was
growing back because I had such slow regrowth until it
reached a certain point, and I just I felt like
I was like a toddler. I was just like, hey, guys, oh,
speaking of taller.
Speaker 1 (19:43):
I'm just gonna put this out there. If you if
you know someone who goes back to school who just
had treatment, or even if like you're in a younger
grade or older grade, can you see someone walking around
with a bald head, even if they're in a sweatpants
and a sweatshirt, don't go up to them and ask
if they're yeah, don't do that. I have that happened
to me on two occasions. I in my middle school.
(20:07):
It didn't make me feel good. I'm like, just coming
back from treatment. I didn't look good and feel good,
and then you coming up to me either asking if
I'm sick or if I'm a guy. I was like
I was.
Speaker 2 (20:20):
I had people like and I had like an inch
or so of hair at that point, and I had
people who when I came back to school, they were like,
I'm just so shocked that you have any hair at all,
Like you're so strong for.
Speaker 1 (20:30):
That, don't even why are you not talking? Why?
Speaker 2 (20:34):
No, that that's part of it. It's like it's not
just you you're sick at this point, but it's like
your entire life is changing. You aren't allowed to do
a lot of the activities that you did before, and
like you're just a different person at that point. And
then on top of that, when you look in the mirror,
it's just so different from how you see yourself, like
(20:55):
in your head, and it's just like who is that
person like type thing. And then it's like people bringing
up that you're different exactly, and it's like why are
you doing this?
Speaker 1 (21:03):
Like I get that I'm different. I get that you've
long loshed his hair and beautiful eyelashes like do much
and especially when you're like in middle school or high
school when the people that age.
Speaker 2 (21:13):
No filter, no filter at all. So it was so delightful.
I love great experience.
Speaker 1 (21:20):
For some reason, my middle school too, everyone was wearing
makeup and because like I don't know something with treatment,
I just like didn't feel the need to wear makeup
and just have it on. It just felt like a yeah,
I was.
Speaker 2 (21:33):
I wasn't a person who like wear makeup at that point.
And it was only like after I went back that
I was like, wait, should I be wearing makeup?
Speaker 1 (21:39):
Because like the only time. The first thing I ever
bought was an eyebrow pencil first and everything I ever bought,
and then I bought bright blue mascara because I thought
it would be fun to her before all my eyelashes
fell out. Those are the only two things ahead of
the time, so of course your eyelashes or eyebrows fall
out like everything. So I had zero eyebrows, zero island.
(22:00):
I looked just like mister Clean. I thought I did
that for Halloween. I painted on my forehead like Avatar
had the bright blue arrow on my head.
Speaker 2 (22:10):
Okay, that's kind of a great cost of idea, I
will say, if you're looking for costume ideas, like the
bald head kind of works quite well.
Speaker 1 (22:19):
I wish I wish I would have done pipull.
Speaker 2 (22:21):
You kind of win Halloween at that point if you got.
Speaker 1 (22:24):
Like what mister clean pit Bull after the last Airbender, Avatar,
what else?
Speaker 2 (22:32):
I think I was like a fortune teller at one
point and then like really.
Speaker 1 (22:38):
Just anything you can't Okay, what I wish I would
have done. I saw this on TikTok Is, the people
that Hannah their head.
Speaker 2 (22:45):
That's I like that.
Speaker 1 (22:47):
I wanted to hand out my head so bad, but
I already have hair going back, and I was like,
I'm like, oh, you can shake your head. I'm like
we could have been avatar. We could have been like whatever.
But as soon as your hair grew back, as you
noticed like was it lighter, was it curlyer, straighter?
Speaker 2 (23:03):
And like my hair did a complete one eighty. When
I was diagnosed, it was sick, sick, straight blonde and
very thin. And then as it grew back, oh I shaved.
Speaker 1 (23:14):
I had a couple of times.
Speaker 2 (23:14):
The first time I grew back, it was so unhealthy
and it just fell back out again just because because
I was still in treatment and stuff. And then when
it grew back this final time, it is now ridiculously thick,
brown brunette. I'm a brunette now and curly. It's not curly,
(23:36):
but like yeah, because I feel like at this point,
like the length weighs it down. But I definitely have
like some texture to it that I didn't before. And
that took. That was a learning curve in terms of
like I don't wear it like naturally wavy. I will say,
like I am someone who strains.
Speaker 1 (23:57):
It and I feel like all the time, like I
can't see went off the fire alarm for straight hair.
Speaker 2 (24:02):
Hair because I'm someone who I messed with my hair
twenty four to seven. It's like I'm always running my
hands through it. I'm always adjusting my hairstyle like it's
just like a nervous tick of mine.
Speaker 1 (24:12):
It's also like you didn't have it so dot it
I didn't.
Speaker 2 (24:16):
Yeah, So I like all the different hairstyles and the
putting it up with bows or I had to relearn
how to braid my hair. That was a big one.
I just now mastered the like French braid whatever thingy.
It was just such a learning curve. And I remember,
like it was crazy to me when I graduated from
like this mini travel brush that I like because I
again I had like short hair, and to like, I
(24:37):
was like, wait, like I actually need like a real,
like actual like hair brush. And that was like such
a like weirdly big moment to me because I was like,
I have enough hair for this now for some reason.
Speaker 1 (24:47):
No, I went from a comb yeah to a real rush.
Speaker 2 (24:52):
No, because your hair you keep it pretty like shoulder
lengths on the regular.
Speaker 1 (24:57):
I mean when it was going back, I mean, I
I can't tell you came back darker but also my
hair used to be like really curly, but now it's
like it's wavy, but like after a few days it'll
go straight, Like after a shower it'll be like curly,
but then once it's just like like in bin in
the air and then stuff, it'll just it'll go straight.
(25:19):
But yeah, when it was going back, I just didn't
want to do it, Like I didn't want to style
my hair. And when you have shorter of hair, you
have to style it or it just looks weird.
Speaker 2 (25:26):
There were a lot of hats involved in my hair
regrowth process, a lot of bandanas, headbands.
Speaker 1 (25:32):
I did anything on my head I couldn't do it
really made it itchy.
Speaker 2 (25:36):
Okay, that makes sense.
Speaker 1 (25:38):
Yeah, So I just but as soon as I as
soon as there was just enough hair to where I
could put it up in the tiniest little like little
pony on the top of my head, I would go
to school with this little poof because I just want
to show off that I just have the tiny spit
of hair. But I'm like, I have this little poof
so I can do it into a little punny You
have a punny tail, I have a punny tail.
Speaker 2 (25:57):
There was a lot of hairstyle regret that went into
my middle school days with my hairy growth.
Speaker 1 (26:01):
I oh, I had the worst side part.
Speaker 2 (26:03):
Oh my god, who let me leave the house like that?
Speaker 1 (26:06):
My mother? My mother dead? Yeah, going back onto the
topic of parents, is there anything that you would say
to your parents now, or actually anything you'd say to
like your younger self before you got diagnosed.
Speaker 2 (26:20):
I think that post diagnosis and like post treatment, I
was so angry and there is a lot of like
grief and anger that goes into this process. And I
feel like when you tell people, oh, I had cancer,
they're like, oh, I'm so sorry that happened to you,
And it is. It's a devastating process for everyone involved,
and there is so much like loss involved in that process.
(26:42):
But honestly, I'm I was diagnosed at eleven and now
I'm seventeen, like a couple months away from eighteen, and
I just don't know who I would be if I
hadn't gone through that process. And obviously I wouldn't wish
that up anyone, But I've made so many friends through that,
(27:03):
so many people who like I genuinely hold so dear
to my heart. The doctor's, the nurses, and I would
just be telling myself, like, lean on the people who
are supporting you, Like they're there to support you, they
want to support you, and like even if you're experienced
experiencing that anger, like it's okay to feel that grief
and anger, but like those people are there for you
even if you don't see them right now.
Speaker 1 (27:25):
But they also do get it. Like Eve, I told
my mom too. I was like, I'm mad at you,
but that's only because you're here for me twenty four
to seven.
Speaker 2 (27:34):
That's the person to be angry at at that point.
Speaker 1 (27:36):
I'm like, you're here with me for so long. I'm
just like I'm just annoyed because like you're the only
person that I know that I can get annoyed at
and you'll still love me at the end of the day.
Like you won't get mad, you won't like storm out
of the room, because like you know, my mom had cancer,
so she knows what I was dealing with at the time,
So she knows that I was angry. She knows that,
(27:58):
Like she was the only person there with me at
the time time, so like she was the first person
about to get angry at it.
Speaker 2 (28:04):
Yeah, there was there was a lot of anger in
the household thost couple of years being on a lot
of steroids road rage was didn't help a lot of
tween age hormones.
Speaker 1 (28:19):
But uh well, the teenage years and humor treatments are
the worse.
Speaker 2 (28:24):
It's it's a weird combo to mix, but I mean
you get through it, and once you're on the other side,
like now, at this point, at least I'm able to
like help the people and like contribute to like making
that experience better for other people.
Speaker 1 (28:41):
So yeah, so you mentioned star Wards. What would you
say to someone who has recently been diagnosed with your
type of cancer? What would you tell them, like, this
is what you're gonna experience, or like these are the options.
Speaker 2 (28:57):
I mean they I will say the doctor who no
matter where you are, so oncologists have done so much
research into this, and obviously there's so much research still
to be done. But the programs that they put together
in terms of approaching blood cancers are so regimented. They're
divided into different phases. So there's the first couple are
(29:21):
such a blur to me, But there was like inner maintenance,
and then like the last a couple other whatever. I
really just remember intermintenance and maintenance in terms of that.
But every month to a couple of weeks would be
sectioned into different types of treatment. So I still haven't
received like my full like passport for care type thing,
(29:43):
where like I get my fullest of medications I was on,
but there were a couple different types of like intravenous
medications methyl trek SAY or capertine six MP, PREDENTI zone.
I was on pred and zone for like forever because
it's a very common treatment for leukemia. All these other
(30:05):
things that I'm totally forgetting right now.
Speaker 1 (30:07):
You're fraid I can't even remember a single one that
I did. I can't even remember the names of it.
I'm just like this one was clear, this one was
kind of white. This this one.
Speaker 2 (30:16):
Was like me on yellow and made me like yeah. Well,
So every like the first week it was like really
intense like IV treatments after especially after I got my
pored in and that was in the hospital, and then
the next three weeks, the remaining the remainder of February,
I was on three solid weeks of steroids and then
(30:39):
I would go in every other day from Dallas, and
I live about thirty minutes from my doctor's office. I
would go in every other day and get like two
hours worth of like IV treatments, and then we'll be
taking like medications at home, just like pills and stuff.
I did learn very quickly it's nice to have a
pillbox to remember all your stuff, which is so weird
(30:59):
at eleven because I'm like, it's not the one Grandpa
used this, but uh now all of a sudden, you're
basically there with him. And then the next month or so,
I was like, oh, okay, now you're going in every
other week and you're taking these medications at home. You
just you have to stay on top of things because
it just changes changed so frequently. In April of twenty nineteen,
(31:22):
I believe for like two or three weeks, I was
doing like giving myself shots of something, and then that
summer I would go in for like IV treatments in
the hospital. My voice shaky right now, it's just.
Speaker 1 (31:35):
A little girl and having.
Speaker 2 (31:38):
I would go in for IV treatments in the hospital,
but I would be fully admitted for that and then
will be twenty four hours of fluids, twenty four hours
of I want to say, methyl treks eight. And that
was like the neon yellow one, and it made me
feel so terrible, like I was guaranteed. I was like
hour four, I will be peeping my guts up. At
hour like twenty, I will be absolutely zoned. Oubt like whatever.
Speaker 1 (32:02):
Right.
Speaker 2 (32:03):
It just made me feel awful. And then I would
stay there until my accounts had recovered from it, So
that was like anywhere from like four days to eight
days of a stay. And that was like every two
weeks during that summer. And that was my first summer
that I went to camp. You weren't there yet, but
I'm got to know that past. I met some other
great people before then, and that was so helpful, especially
(32:27):
because I was I'd been on treatment for about four
months at that point, and I was just able to
be like wait, like there's other people who get it,
like they're with me type thing. And I wasn't the
only person who was bald, which is great to not
be receiving weird looks at that point. And then like
when I went once I went back into like fall,
then I was like on and off of whatever. And
then I entered maintenance, which is when every month I
(32:52):
would go in and I would get a spinal tap,
and then I would get like whatever medication they were
giving meat through the ivy, and then we'll get a
week of steroids, and then we'ld be doing the other
three weeks of the month just whatever my normal dostage was,
and then that the next month it would repeat. So
I was on a lot of steroids, which again is
(33:13):
a very common treatment for lukemia. But yeah, there's just
there's so much upkeep and maintenance in terms of like
medications that you're on, So keep on top of that.
It is important, and you're gonna hate taking them because
they taste disgusting. I will say ice cream, whipped cream,
chocolate milk, anything to hide the flavor. Guilt your parents
and buying you ten gallons of ice cream because you
(33:36):
just really needed to take your medications.
Speaker 1 (33:38):
All I'm saying like anything, anything's work. I remember I
to take this.
Speaker 2 (33:42):
Like sweet is it the orange over moures?
Speaker 1 (33:49):
No, it wasn't. It was for something else. It had
to do for my bone or whatever. But it was dry.
It was like I didn't have surgery and they were
like there's this powder to like help your bone get stronger.
It's such a mixing was like orange juice stuff. It
was the most nasty stuff. I had ruined orange juice
for me.
Speaker 2 (34:07):
I still can't have like over the counter medications that
are like cherry or grape or orange. I'm like, what
is wrong with you? This is disgusting. Who thought this
was a good idea? No, but no, there's just it's
such an experience, which is well that no one should
(34:27):
have ever experienced, wouldn't recommend. But okay, since we're wrapping up,
what is a one piece of advice that you would
give someone that's listening right now? If you are on
treatment or have know someone who's going through treatment, keep
an Emesis bag with you at every given moment. It's
the blue little like like vomit bags that they give
(34:49):
you in the hospital. We bought a five hundred pack
when I started treatment, and those things are a lifesaver.
I know you're expecting something very sentimental, but like genuinely
bestrid practical advice, and they're handy even when you're not
on treatment.
Speaker 1 (35:03):
So I just say, don't eat your favorite foods, because
when you eat your favorite foods during treatment, you're going
to hate them.
Speaker 2 (35:08):
You don't want to be going through.
Speaker 1 (35:10):
And it's not good. Well, I love you so much
love you dearly, I'll see you in literally two weeks,
and thank you so much for joining
Speaker 2 (35:20):
Us, Thanks for the podcast, Bye bye bye
Hi, yone, it's Eva and welcome back to Kids Feeding Cancer.
I'm here with my best friend Autumn.
Speaker 2 (00:17):
It's nice to be here. Thank you for having me.
Speaker 1 (00:20):
So we both had cancer. Ours were very different though
you had yours when you were.
Speaker 2 (00:27):
I was eleven when I was diagnosed.
Speaker 1 (00:29):
I was thirteen, so she was much younger. So she
had a little bit of a harder time because and.
Speaker 2 (00:34):
They were also very different types of cancer, which I
feel like you to that difference in treatment and experiences.
You have a cute lymphoblastic leukemia so AL, which is
the most common childhood cancer to be diagnosed with.
Speaker 1 (00:50):
Wait an explain it for the people who don't know
what that is.
Speaker 2 (00:52):
Okay, So it's essentially a blood cancer. I mean not
essentially blood cancer. It is a blood cancer where you
or white blood cells are premature and then they go
into your body. But because the like regenitive like things
are just multiplying, which leads to you know, cancer. So
that's fun. It took me about four months to get
(01:16):
diagnosed by the time I was experiencing symptoms and uh yeah,
so here we are about six years later, and it's
been a journey.
Speaker 1 (01:28):
So yeah, and you had I had bone cancer like
some ings viewings are cola basically just made my bone
very brittle. So I mean, very different, very different experiences.
Chemo journeys were very different. You had radiation, no, okay,
so that's something we experienced. We both didn't have radiation
(01:51):
just long when was nine one's humo.
Speaker 2 (01:55):
I had two and a half years, okay, so yours
was much much longer.
Speaker 1 (01:59):
Yeah, how did that? You were in the hospital the
whole time?
Speaker 2 (02:04):
No, so for mine. Because it is a blood cancer,
they don't know what part of your body it's in,
and there's a danger of it getting into your spinal cord,
it getting into your brain like stem, and so because
of that, the protocol is to do two and a
half years when the time at the time I was diagnosed,
if I had been a boy, it would have been
three years because who knows why. Apparently women are just
(02:27):
more petite and don't need as much. But now it's
gone down. The protocol is just two and a half
years across the board for everyone, but just to make
sure that you're getting all the cancer cells out and
there's not a chance for reoccurrence because the cells could
be anywhere or in any organ and you don't really
know because blood is everywhere in your body, so that's fun.
Speaker 1 (02:47):
When you're in the hospital. Was there a certain thing
you did.
Speaker 2 (02:52):
I napped a lot, and my mom and I would
watch Adam Sandler movies. I think you watched all of movies.
I was like eleven or twelve at the time, which
I mean isn't like a bad age to watch those.
It was just like I was so excited because I
was like, oh, these are like not kids movies, and
like I was like they were fun. They were just
(03:12):
little rom coms and stuff. But I very vividly remember
either just like napping or watching movies with my mom,
which was fun.
Speaker 1 (03:20):
Okay, since you were eleven, what was friendships like like
school friendships?
Speaker 2 (03:25):
Okay, that's honestly. I was a kid who didn't have
like a big friend group. And fifth grade was like
the first year where I was I'd been in the
same school most of my life, but it was just like, dude,
to like the way my classes were, and like I
would like started a bunch of new extra curriculars. I
was in like this extra choir. I was doing theater.
(03:48):
That was like the first year where I kind of
had like friends who I was like hanging out with,
like on the regular. And that's I think part of
why I was just like so upset when I was diagnosed,
Because I was diagnosed February eighth, twenty nineteen, which was
like a Friday, and I was like, oh, like do
I get to go back to school and like say
(04:09):
like like you know whatever, and they're like no, like
you're being admitted to the hospital and like an hour
and a half, like you aren't going to go back
and see your friends. And so I think from like
the time I was diagnosed, hims in the hospital a
week and then I didn't see anyone else I really knew,
like she was my age at least until like March,
(04:31):
like late March April, for like a field day thing.
And the only reason I was allowed to do that
is because it was outside, so I wouldn't get all
the germs that are floating around indoors, you know, and
I was very isolated. My immune system was effectively zero
at that point. I didn't really see a whole ton
of people my age, except like my brother, which I
(04:52):
love him to death. We are friends now, but for
a hot second there, I was just about ready to
kill the dude. He was great and he held his
own but yeah, it was a lot. But no, I
think that's part of it is because it was two
and a half years. I was so isolated from everyone,
(05:12):
and I was in and out of the hospital anytime
I got a fever, which anytime my immune system tanked,
which again was pretty much at any point in treatment,
I would develop a fever. And if you have a
fever at all, you're in the hospital two days. Make
sure you don't like it's I was so all over
the place that I didn't really see a ton of
people I knew until I was allowed to go back
(05:34):
to school in like by Christmas, I think, so it
was like about a year and then that was twenty twenty.
So about two three months later, COVID hit and I
was isolated again because as someone with who had some
sort of an immune system but not a great one
and not a here's a new disease that's everywhere in
(05:57):
the pandemic, and so I was isolated again. But I
didn't see a whole ton of people, but afterwards a
lot of friends so I knew, like before that and stuff,
I'm very close with them now and like, yeah, but
it took me a bit to get used to, like
the socialization part afterwards, just because you haven't seen anybody
and you haven't interacted with them, and it just felt
(06:19):
very awkward and distilted, which I feel like isn't talked
about enough because it's like, here's this thing that you
went through, this was your life for the past year,
six months or more than a yearnest.
Speaker 1 (06:29):
Likely no one can relate.
Speaker 2 (06:31):
So it's like, yeah, no one who I knew was
like really there on that journey with me outside of
my family, and at that point, I'd been only seeing
my family for about two years, and I was I
didn't want to talk to them about everything, So it
was hard. But I'm close to a lot of people
who like are luckily able to understand that part.
Speaker 1 (06:52):
Now, Yeah, you've felt a lot of people now that
a lot of people like you know and talk about it.
What we're talking about. We both went to Middleical City
and they have this little program where you can get
to camp and you get to talk and basically share
all your stories with people who went through treatment. Gone
through the treatment. Some of our best friends we know
(07:14):
have gone through the same struggles that we have. We
just it just have closer bond than just like your.
Speaker 2 (07:19):
Friends at school wout out camp. I hope, love y'all,
love y'all.
Speaker 1 (07:24):
Okay, I feel like this isn't touched on enough. What
were like all the things that changed, Like for me,
my taste buds change. I couldn't eat anything, but also
certain smells triggered me. What were the smells and tastes
the trigger too?
Speaker 2 (07:40):
Anything like plasticky like there was on the railing on
like my bed in the hospital, there was like this
plastic cover over the like what a blood pressure monitor,
And genuinely it like made me so incredibly nauxious and
even now, like anytime I smell it, like just it's
(08:01):
like the plastic smell smell anytime I treatment. If I
smelled that, I was instantly like nauseous.
Speaker 1 (08:07):
It was disgusting. Like random triggers, You're like, I wouldn't
have triggered me before. It's like a random Like.
Speaker 2 (08:13):
No, my mom had like this hand soap that I
couldn't stand that. I was just like, why do you
smell like that? Like these like wash your hands. I'm like, no,
don't don't come near me, don't wash your hand, like stop.
Speaker 1 (08:25):
Washing your hands, just don't wash your hands in general.
Exactly for me, it was that weird like metallics like
smell from the hospital. I don't know what it was,
but it was just like this like metallic medicine smell,
like I had to just I just couldn't do it.
But then in the hospital, we're at that cafeteria downstairs.
(08:49):
I would have to plug my nose in sprint across
the caffeteria because I couldn't deal with them. It was
like this weird smell. Still to this day, I have
to plug my nose and I tell the mo I'm
like one G three go like we both sprint to
the elevators. I'm like, I just can't.
Speaker 2 (09:02):
I can't stand it. You can't, I will say, taste
bud wise. I know that I started like craving citrus
while on treatment, And if you know me in person
or just know me in general, you will Lemons are
obsessed with lemons, and this is where that stem from.
She'll eat a lemon, I've seen I will eat a lemon.
(09:23):
I have Lemon water is superior to normal water. Anything grapefruit, lime,
lemon flavored, lime flavored desserts.
Speaker 1 (09:32):
It's the unhealthy obsession, gets her water bottle and she'll
be like, does anyone have any lemons on them? Or
like she'll go to the tunic. All the lemons you have,
just give me them.
Speaker 2 (09:41):
Shout out if you're obsessed with citrus, true lemon lemon packets.
Those things are crystallized lemon and they taste like lemon
juice for them in the water.
Speaker 1 (09:49):
Did you know what taste like lemon juice? They do
taste like lemon juice at It's Deli, she told us
all She was like, yeah, it's like lemonade, no smell,
macro water just like lemona. It tastes like just straight lemons.
That's exactly how I like it, though, No but no sugar,
It just just lemon.
Speaker 2 (10:09):
I was just like creeping that citrus. I don't know
what it was. But something about like the chemo.
Speaker 1 (10:14):
Just like the chemo just messes with you because I
feel like a lot of stuff that you'd.
Speaker 2 (10:18):
Liked before it just isn't the same anymore.
Speaker 1 (10:21):
Rice for better taste like cardboard. Couldn't do rice anymore.
I couldn't do chicken casadios I that's that. I don't know.
I had them the hospital and then I just can't
do it anymore. Every time I eat it, I want
to throw up.
Speaker 2 (10:35):
Did you ever go to the Anissa Tacos Anissa's Tacos
down in Media City. I had to always order it
like I could not, Like I was obsessed with like
KFC mashed potatoes for a while.
Speaker 1 (10:47):
I hate I couldn't do mash potatoes. It was like
the texture for me every single time I ate it,
Like during treatment, I was like this texture texture was
also weird, thing like blankets like different services.
Speaker 2 (10:58):
I like, you're just your skin was so sensitive on treatment,
Like it was weird.
Speaker 1 (11:03):
I ever I go because I couldn't deal with like
the hard word surfaces. It's like something of just like
my feet on it.
Speaker 2 (11:09):
I was just like yeah, yeah, like so gross to me.
Speaker 1 (11:13):
And my mom would always complain. She'd be like, you're fine,
it's just what I'm like, like it feels like someone's
about to like rip my feet off. Was like, don't
even start with me. It was like give me some slippers.
Speaker 2 (11:22):
I'm like no, I feel like the way you're feeling
while on treatment and even like post treatment, because there
are those like long term side effects that come with it.
You just every five minutes, you're feeling some sort of
like new sensation like oh, you're nauseous, but then the
next minute you're like ravenously hungry. Like I would literally
like threaten my mom, like no, I need a Costco
(11:44):
hot dog right now. I will kill someone if I
don't get a Costco hot dog right now.
Speaker 1 (11:47):
It's also it's like still like the real thing. It
was like I'll get like I'll be like it was
like that, but then I'll get the food I want
and then I'm like, also not hungry anymore. I was like, actually,
can you take this sway from me? I was like,
I don't eat it. My Dad's like I just paid
forty dollars for you to get this food, you better
eat it. I'm like no, I'm just like really no hunger.
And I was like can you just like you know,
he's like what am I supposed to do with this
(12:08):
for you? Or you know, I'm like, you can eat it,
save it for later.
Speaker 2 (12:12):
The next time I changed my mind.
Speaker 1 (12:15):
I was like, it was like, I mean you can
say that. I was like, I'm probably not gonna eat it,
Like you're probably just gonna crate something else. You're gonna
have to go get only for me, do not eat. Sorry,
I'm not sorry speaking of parents who stayed with you,
because all the time, because I was diagnosed during COVID,
we can only have one parent stay with us.
Speaker 2 (12:35):
So well, okay, my mom was the one who stayed
with me mostly during treatment, but up until obviously COVID
hit and the policies changed, and at that point I
really wasn't in the hospital for like treatments anymore. I'm
I was just in and out of the clinic itself.
Both parents could be there, so my brother came and
(12:56):
visited me a bunch like my parents. Both my parents
would be there. I had a lot of family come
because they're like in the area, which I always felt
so bad about because I was like which obviously like
you never sorry, you never experienced I'm so.
Speaker 1 (13:08):
Sorry, but I couldn't see anyone but my one parent.
That one parent would do my mom because if my
dad's back, you like couldn't sleep on like the couch.
Speaker 2 (13:18):
Or like awful, I will say, like they treat them
like they do their best with like the patients and
the caretakers.
Speaker 1 (13:27):
All they don't care less about their parents, Like your
parent has a stick with you, but they're like, no beds,
like you did either sleep on a couch or you
have to bring your own.
Speaker 2 (13:35):
I will say, like caretaker support especially through that process,
Like and it's so weird from like a patient standpoint
because I'm like, oh, no, like this is this thing
I experienced. But then I'm like, no, my entire family
experienced it. My mom, my dad, who are dealing with Like,
caretaker support is so important, and I feel like that
just like really needs to be emphasized because even in
the little things of like this bed freaking sucks, somebody
(13:56):
give me a comfy couch to lay on, like type thing.
Speaker 1 (13:59):
I don't know who it was, but my mom like
when I was a minute into hospital, like someone reached
out to her and was like, hey, my kids on
treatment anymore. But like I use this Arab mattress and
it basically saved my back and my shoulders and my neck.
I'm going to give it to you, like you're gonna
need this. Oh, I would absolutely recommend an air matchss
and she I mean literally sting on the air mattress
(14:19):
and like it literally chok out the whole room. It
was bigger than my hospital bed. It was so big,
and at one point, like some point in time, because
like the hospital bed is so uncomfortable, I would I
would take my ivy pool that I would go over
to her inflatable mattress and sleep on it. And then
she would be like, okay, I need my bed now,
(14:41):
like please get out, Like like no, what.
Speaker 2 (14:44):
Like did you ever ask for like the egg create
thing that they can like the mattress protect her, Like
not mattress protecting, but like the extra like mattress pad
that goes on top of it.
Speaker 1 (14:54):
I think, is it like a little foam. Yeah.
Speaker 2 (14:56):
But then it's like, well they had like this this
stick from the hospital.
Speaker 1 (15:00):
Yeah, No, I did bring my own. It was like
this thick because like literally no less than an inch stick.
She's talking about one that's probably like five inches stick.
That what she just showed me. I'm sorry I had
to brain one that was literally INTI did nothing for me. No,
they need to say what I bring to camp.
Speaker 2 (15:15):
It's itty bitty. I'm so sorry for you. No, I
will say I had so many joint issues, like my
back hurt, my neck hurt, my limbs hurt. Like I
was just so uncomfortable anywhere I slept so every time
I would be admitted to the hospital, you have to
ask for that extra thick like mattress extra like I
don't know, mattress pad. And then I got one from
(15:36):
my own house. I got one for my own bed too,
because I was like a little extra support when you're sleeping.
Speaker 1 (15:42):
I never got to camp because those mattresses are hard.
I wish I would have known that, because I think
I would like hack. I don't know what it was,
but I never heard. I know I always asked for
us extra blankets. But you know those are like literally
like paper thin.
Speaker 2 (15:58):
Sheets of paper and when they're warm, though those are
so nice, then.
Speaker 1 (16:02):
They like cool down in two seconds. We can I
get a warm blanket. By the time they bring it
to me, it's cold. I'm like, can I just go
get it myself, Like I'll just go get it so
that way I just have two seconds of warm before
it goes cold to get.
Speaker 2 (16:16):
Back around yourself then put it right back in.
Speaker 1 (16:18):
I know, I just I want that level blanket heater
from my own blankets. But I feel like you can
just get that health blanker I'm afraid of about. I
put it in my like soft little blankets and then
it'll like fried up and whiles in my house is
on fire. Mm hmm. You never know, ify, I don't know.
Oh what else did you experience during tamen or anything weird?
Speaker 2 (16:42):
Oh okay, because you had a port.
Speaker 1 (16:45):
We both had ports, yeah, or throwing two different locations.
Speaker 2 (16:48):
But yeah, I will say I was so upset because
when you have a port, the risk for infection is
obviously very high. It's being access like whenever you're getting
treated it. So it's kind of just like this wound
that you have all times, which is it's obviously a
miracle of medical invention type thing. It is so helpful
(17:10):
and I'm thankful for it every day. You can't play
on your stomach, you can't lay on, you can't land
on your front. It's so uncomfortable. It feels weird. It
feels like I'm part robot.
Speaker 1 (17:19):
Now there's like it does something with it. It's like
even though I don't have mine, it's like a bum.
Speaker 2 (17:26):
No, Like there's like scar tissue there.
Speaker 1 (17:28):
It's so uncomfortable, Like there's like literally just like a bump,
but it won't go in. They're like, oh, that's just
a tissue, Like okay, how do you get rid of
that tissue.
Speaker 2 (17:34):
Well, I was upset because when you have the port
and just in general, like your immune systems nothing, so
I couldn't go in links and rivers and they're like
swimming in community pools. And I'm someone who like I
enjoy it good swimming, a good lake, I say, because
it's a private pool, but community pools because my own
private pool, and not that I would want to go
(17:58):
on my hus pool. That place is disgusting. I'm not
that this little toddler swimming around.
Speaker 1 (18:03):
No, well, when we need each other back then.
Speaker 2 (18:07):
That but my parents decided, like the second summer I
was on treatment, that it was a brilliant idea to
get this like foat club membership where you would like
pay so much money and like then you could like
take out books for the day or whatever. Right, Well,
that was great for the people who could go in
the lake and who could go inner tubing and go swimming.
(18:27):
But I was only permitted to sit on the boat
and fish. I couldn't swim. I couldn't go tubing. And
my brother and his millions of friends are out there like,
oh my god, guys, I just flipped out the inner tube.
How awesome? Was that, And I'm like, you're like, no,
these guys really appreciate that. I was very upsety spaghetti
about that one. But it was great once I could
(18:51):
go swimming.
Speaker 1 (18:52):
But I know, I don't think I went to a
lake at all during my time, but I guess mine
wasn't even a year long, so I mean, well, my.
Speaker 2 (19:00):
Family's also just like a lake family, like if we're
gonna go swimming, like it's like you would normally go
to lakes.
Speaker 1 (19:05):
But uh, I can't imagine. I mean just I was
jealous of people who had hair. I can't even imagine,
like being jealous of someone who's like you're like sitting
on a boat just like watching me all the delts
with the people who had hair.
Speaker 2 (19:16):
Don't get me wrong.
Speaker 1 (19:17):
I'm like, I'm watching like all these people at my
school like putting their hair up into a pennytail and
like swishing it around while they walk. Maybe here's my
bald head. I'm like, can I cut your hair? It's
like can I Actually, I'm just gonna cut it, Like.
Speaker 2 (19:28):
I look at that oddler with my like even whenever
I didn't have hair or then like once it was
growing back because I had such slow regrowth until it
reached a certain point, and I just I felt like
I was like a toddler. I was just like, hey, guys, oh,
speaking of taller.
Speaker 1 (19:43):
I'm just gonna put this out there. If you if
you know someone who goes back to school who just
had treatment, or even if like you're in a younger
grade or older grade, can you see someone walking around
with a bald head, even if they're in a sweatpants
and a sweatshirt, don't go up to them and ask
if they're yeah, don't do that. I have that happened
to me on two occasions. I in my middle school.
(20:07):
It didn't make me feel good. I'm like, just coming
back from treatment. I didn't look good and feel good,
and then you coming up to me either asking if
I'm sick or if I'm a guy. I was like
I was.
Speaker 2 (20:20):
I had people like and I had like an inch
or so of hair at that point, and I had
people who when I came back to school, they were like,
I'm just so shocked that you have any hair at all,
Like you're so strong for.
Speaker 1 (20:30):
That, don't even why are you not talking? Why?
Speaker 2 (20:34):
No, that that's part of it. It's like it's not
just you you're sick at this point, but it's like
your entire life is changing. You aren't allowed to do
a lot of the activities that you did before, and
like you're just a different person at that point. And
then on top of that, when you look in the mirror,
it's just so different from how you see yourself, like
(20:55):
in your head, and it's just like who is that
person like type thing. And then it's like people bringing
up that you're different exactly, and it's like why are
you doing this?
Speaker 1 (21:03):
Like I get that I'm different. I get that you've
long loshed his hair and beautiful eyelashes like do much
and especially when you're like in middle school or high
school when the people that age.
Speaker 2 (21:13):
No filter, no filter at all. So it was so delightful.
I love great experience.
Speaker 1 (21:20):
For some reason, my middle school too, everyone was wearing
makeup and because like I don't know something with treatment,
I just like didn't feel the need to wear makeup
and just have it on. It just felt like a yeah,
I was.
Speaker 2 (21:33):
I wasn't a person who like wear makeup at that point.
And it was only like after I went back that
I was like, wait, should I be wearing makeup?
Speaker 1 (21:39):
Because like the only time. The first thing I ever
bought was an eyebrow pencil first and everything I ever bought,
and then I bought bright blue mascara because I thought
it would be fun to her before all my eyelashes
fell out. Those are the only two things ahead of
the time, so of course your eyelashes or eyebrows fall
out like everything. So I had zero eyebrows, zero island.
(22:00):
I looked just like mister Clean. I thought I did
that for Halloween. I painted on my forehead like Avatar
had the bright blue arrow on my head.
Speaker 2 (22:10):
Okay, that's kind of a great cost of idea, I
will say, if you're looking for costume ideas, like the
bald head kind of works quite well.
Speaker 1 (22:19):
I wish I wish I would have done pipull.
Speaker 2 (22:21):
You kind of win Halloween at that point if you got.
Speaker 1 (22:24):
Like what mister clean pit Bull after the last Airbender, Avatar,
what else?
Speaker 2 (22:32):
I think I was like a fortune teller at one
point and then like really.
Speaker 1 (22:38):
Just anything you can't Okay, what I wish I would
have done. I saw this on TikTok Is, the people
that Hannah their head.
Speaker 2 (22:45):
That's I like that.
Speaker 1 (22:47):
I wanted to hand out my head so bad, but
I already have hair going back, and I was like,
I'm like, oh, you can shake your head. I'm like
we could have been avatar. We could have been like whatever.
But as soon as your hair grew back, as you
noticed like was it lighter, was it curlyer, straighter?
Speaker 2 (23:03):
And like my hair did a complete one eighty. When
I was diagnosed, it was sick, sick, straight blonde and
very thin. And then as it grew back, oh I shaved.
Speaker 1 (23:14):
I had a couple of times.
Speaker 2 (23:14):
The first time I grew back, it was so unhealthy
and it just fell back out again just because because
I was still in treatment and stuff. And then when
it grew back this final time, it is now ridiculously thick,
brown brunette. I'm a brunette now and curly. It's not curly,
(23:36):
but like yeah, because I feel like at this point,
like the length weighs it down. But I definitely have
like some texture to it that I didn't before. And
that took. That was a learning curve in terms of
like I don't wear it like naturally wavy. I will say,
like I am someone who strains.
Speaker 1 (23:57):
It and I feel like all the time, like I
can't see went off the fire alarm for straight hair.
Speaker 2 (24:02):
Hair because I'm someone who I messed with my hair
twenty four to seven. It's like I'm always running my
hands through it. I'm always adjusting my hairstyle like it's
just like a nervous tick of mine.
Speaker 1 (24:12):
It's also like you didn't have it so dot it
I didn't.
Speaker 2 (24:16):
Yeah, So I like all the different hairstyles and the
putting it up with bows or I had to relearn
how to braid my hair. That was a big one.
I just now mastered the like French braid whatever thingy.
It was just such a learning curve. And I remember,
like it was crazy to me when I graduated from
like this mini travel brush that I like because I
again I had like short hair, and to like, I
(24:37):
was like, wait, like I actually need like a real,
like actual like hair brush. And that was like such
a like weirdly big moment to me because I was like,
I have enough hair for this now for some reason.
Speaker 1 (24:47):
No, I went from a comb yeah to a real rush.
Speaker 2 (24:52):
No, because your hair you keep it pretty like shoulder
lengths on the regular.
Speaker 1 (24:57):
I mean when it was going back, I mean, I
I can't tell you came back darker but also my
hair used to be like really curly, but now it's
like it's wavy, but like after a few days it'll
go straight, Like after a shower it'll be like curly,
but then once it's just like like in bin in
the air and then stuff, it'll just it'll go straight.
(25:19):
But yeah, when it was going back, I just didn't
want to do it, Like I didn't want to style
my hair. And when you have shorter of hair, you
have to style it or it just looks weird.
Speaker 2 (25:26):
There were a lot of hats involved in my hair
regrowth process, a lot of bandanas, headbands.
Speaker 1 (25:32):
I did anything on my head I couldn't do it
really made it itchy.
Speaker 2 (25:36):
Okay, that makes sense.
Speaker 1 (25:38):
Yeah, So I just but as soon as I as
soon as there was just enough hair to where I
could put it up in the tiniest little like little
pony on the top of my head, I would go
to school with this little poof because I just want
to show off that I just have the tiny spit
of hair. But I'm like, I have this little poof
so I can do it into a little punny You
have a punny tail, I have a punny tail.
Speaker 2 (25:57):
There was a lot of hairstyle regret that went into
my middle school days with my hairy growth.
Speaker 1 (26:01):
I oh, I had the worst side part.
Speaker 2 (26:03):
Oh my god, who let me leave the house like that?
Speaker 1 (26:06):
My mother? My mother dead? Yeah, going back onto the
topic of parents, is there anything that you would say
to your parents now, or actually anything you'd say to
like your younger self before you got diagnosed.
Speaker 2 (26:20):
I think that post diagnosis and like post treatment, I
was so angry and there is a lot of like
grief and anger that goes into this process. And I
feel like when you tell people, oh, I had cancer,
they're like, oh, I'm so sorry that happened to you,
And it is. It's a devastating process for everyone involved,
and there is so much like loss involved in that process.
(26:42):
But honestly, I'm I was diagnosed at eleven and now
I'm seventeen, like a couple months away from eighteen, and
I just don't know who I would be if I
hadn't gone through that process. And obviously I wouldn't wish
that up anyone, But I've made so many friends through that,
(27:03):
so many people who like I genuinely hold so dear
to my heart. The doctor's, the nurses, and I would
just be telling myself, like, lean on the people who
are supporting you, Like they're there to support you, they
want to support you, and like even if you're experienced
experiencing that anger, like it's okay to feel that grief
and anger, but like those people are there for you
even if you don't see them right now.
Speaker 1 (27:25):
But they also do get it. Like Eve, I told
my mom too. I was like, I'm mad at you,
but that's only because you're here for me twenty four
to seven.
Speaker 2 (27:34):
That's the person to be angry at at that point.
Speaker 1 (27:36):
I'm like, you're here with me for so long. I'm
just like I'm just annoyed because like you're the only
person that I know that I can get annoyed at
and you'll still love me at the end of the day.
Like you won't get mad, you won't like storm out
of the room, because like you know, my mom had cancer,
so she knows what I was dealing with at the time,
So she knows that I was angry. She knows that,
(27:58):
Like she was the only person there with me at
the time time, so like she was the first person
about to get angry at it.
Speaker 2 (28:04):
Yeah, there was there was a lot of anger in
the household thost couple of years being on a lot
of steroids road rage was didn't help a lot of
tween age hormones.
Speaker 1 (28:19):
But uh well, the teenage years and humor treatments are
the worse.
Speaker 2 (28:24):
It's it's a weird combo to mix, but I mean
you get through it, and once you're on the other side,
like now, at this point, at least I'm able to
like help the people and like contribute to like making
that experience better for other people.
Speaker 1 (28:41):
So yeah, so you mentioned star Wards. What would you
say to someone who has recently been diagnosed with your
type of cancer? What would you tell them, like, this
is what you're gonna experience, or like these are the options.
Speaker 2 (28:57):
I mean they I will say the doctor who no
matter where you are, so oncologists have done so much
research into this, and obviously there's so much research still
to be done. But the programs that they put together
in terms of approaching blood cancers are so regimented. They're
divided into different phases. So there's the first couple are
(29:21):
such a blur to me, But there was like inner maintenance,
and then like the last a couple other whatever. I
really just remember intermintenance and maintenance in terms of that.
But every month to a couple of weeks would be
sectioned into different types of treatment. So I still haven't
received like my full like passport for care type thing,
(29:43):
where like I get my fullest of medications I was on,
but there were a couple different types of like intravenous
medications methyl trek SAY or capertine six MP, PREDENTI zone.
I was on pred and zone for like forever because
it's a very common treatment for leukemia. All these other
(30:05):
things that I'm totally forgetting right now.
Speaker 1 (30:07):
You're fraid I can't even remember a single one that
I did. I can't even remember the names of it.
I'm just like this one was clear, this one was
kind of white. This this one.
Speaker 2 (30:16):
Was like me on yellow and made me like yeah. Well,
So every like the first week it was like really
intense like IV treatments after especially after I got my
pored in and that was in the hospital, and then
the next three weeks, the remaining the remainder of February,
I was on three solid weeks of steroids and then
(30:39):
I would go in every other day from Dallas, and
I live about thirty minutes from my doctor's office. I
would go in every other day and get like two
hours worth of like IV treatments, and then we'll be
taking like medications at home, just like pills and stuff.
I did learn very quickly it's nice to have a
pillbox to remember all your stuff, which is so weird
(30:59):
at eleven because I'm like, it's not the one Grandpa
used this, but uh now all of a sudden, you're
basically there with him. And then the next month or so,
I was like, oh, okay, now you're going in every
other week and you're taking these medications at home. You
just you have to stay on top of things because
it just changes changed so frequently. In April of twenty nineteen,
(31:22):
I believe for like two or three weeks, I was
doing like giving myself shots of something, and then that
summer I would go in for like IV treatments in
the hospital. My voice shaky right now, it's just.
Speaker 1 (31:35):
A little girl and having.
Speaker 2 (31:38):
I would go in for IV treatments in the hospital,
but I would be fully admitted for that and then
will be twenty four hours of fluids, twenty four hours
of I want to say, methyl treks eight. And that
was like the neon yellow one, and it made me
feel so terrible, like I was guaranteed. I was like
hour four, I will be peeping my guts up. At
hour like twenty, I will be absolutely zoned. Oubt like whatever.
Speaker 1 (32:02):
Right.
Speaker 2 (32:03):
It just made me feel awful. And then I would
stay there until my accounts had recovered from it, So
that was like anywhere from like four days to eight
days of a stay. And that was like every two
weeks during that summer. And that was my first summer
that I went to camp. You weren't there yet, but
I'm got to know that past. I met some other
great people before then, and that was so helpful, especially
(32:27):
because I was I'd been on treatment for about four
months at that point, and I was just able to
be like wait, like there's other people who get it,
like they're with me type thing. And I wasn't the
only person who was bald, which is great to not
be receiving weird looks at that point. And then like
when I went once I went back into like fall,
then I was like on and off of whatever. And
then I entered maintenance, which is when every month I
(32:52):
would go in and I would get a spinal tap,
and then I would get like whatever medication they were
giving meat through the ivy, and then we'll get a
week of steroids, and then we'ld be doing the other
three weeks of the month just whatever my normal dostage was,
and then that the next month it would repeat. So
I was on a lot of steroids, which again is
(33:13):
a very common treatment for lukemia. But yeah, there's just
there's so much upkeep and maintenance in terms of like
medications that you're on, So keep on top of that.
It is important, and you're gonna hate taking them because
they taste disgusting. I will say ice cream, whipped cream,
chocolate milk, anything to hide the flavor. Guilt your parents
and buying you ten gallons of ice cream because you
(33:36):
just really needed to take your medications.
Speaker 1 (33:38):
All I'm saying like anything, anything's work. I remember I
to take this.
Speaker 2 (33:42):
Like sweet is it the orange over moures?
Speaker 1 (33:49):
No, it wasn't. It was for something else. It had
to do for my bone or whatever. But it was dry.
It was like I didn't have surgery and they were
like there's this powder to like help your bone get stronger.
It's such a mixing was like orange juice stuff. It
was the most nasty stuff. I had ruined orange juice
for me.
Speaker 2 (34:07):
I still can't have like over the counter medications that
are like cherry or grape or orange. I'm like, what
is wrong with you? This is disgusting. Who thought this
was a good idea? No, but no, there's just it's
such an experience, which is well that no one should
(34:27):
have ever experienced, wouldn't recommend. But okay, since we're wrapping up,
what is a one piece of advice that you would
give someone that's listening right now? If you are on
treatment or have know someone who's going through treatment, keep
an Emesis bag with you at every given moment. It's
the blue little like like vomit bags that they give
(34:49):
you in the hospital. We bought a five hundred pack
when I started treatment, and those things are a lifesaver.
I know you're expecting something very sentimental, but like genuinely
bestrid practical advice, and they're handy even when you're not
on treatment.
Speaker 1 (35:03):
So I just say, don't eat your favorite foods, because
when you eat your favorite foods during treatment, you're going
to hate them.
Speaker 2 (35:08):
You don't want to be going through.
Speaker 1 (35:10):
And it's not good. Well, I love you so much
love you dearly, I'll see you in literally two weeks,
and thank you so much for joining
Speaker 2 (35:20):
Us, Thanks for the podcast, Bye bye bye
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