Win Bars for LSU Tiger Football and Aplastic Anemia Pediatric Patients

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Are you wondering what college football
and aplastic anemia have to

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do with one another? Well, I don't want to
make you wait anymore,

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let me tell you. LSU fans, I especially
need you to listen to this one.

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When Ryan Solieau son Henry became
dependent on blood transfusions because

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of aplastic anemia, their family spent
years in and out of the children's
hospital.

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And somewhere along the way, Ryan was
inspired by a piece of LSU tradition,

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and he brought it inside his children's
hospital.

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So if you've ever been to Tiger Stadium,

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apparently you know about the wind bar,

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that's W-I-N bar. And Ryan started making
his own win bars for kids

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who were going through treatment so they
could hang one over their door

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and touch it on their way out,

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carrying that same message with them:

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a commitment to do whatever it takes for
victory.

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I can't wait for you to hear Ryan and I's
conversation when he literally talks about

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the moment he was like, I just have to
create this for my kid and I have

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to do it for other kids too. He started
just by bringing them to kids at Henry St.

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Jude Clinic, and now he sends them to
families around the country.

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So LSU fans, do your thing and share this
with other LSU fans.

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This episode is especially for you.

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But it's also a conversation about being a
dad in the children's hospital,

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what repeated procedures can do to a
child,

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the people who become family along the
way,

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and what happens when one's family's very
difficult experience actually turns into

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a way to support the next. Let's Geaux
Tigers,

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and of course Nittany Lions, and go ahead
and listen to my conversation with Ryan.

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Well, Ryan, why don't you introduce us to
a little bit about you and who you are,

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a little bit about you, Ryan, and ~ where
you come from.

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Okay, yeah. ~ Ryan Solieau originally from
small town,

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Louisiana, Vill Plat, but been living in
Baton Rouge for about fifteen years now.

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~ yeah, and just have three beautiful
little kids,

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beautiful wife. ~ yeah,

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living the dream.

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love it. That muggy Baton Rouge life.

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Yeah.

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For sure. well, talk to us a little bit
about why you wanted to come here

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and share today and really what you're
hoping that parents take away as they
listen.

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~ I guess just about,

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you know, the hospital life and how it's ~

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It it could be hectic, but it's also like
it's I I don't know if

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our situation's any different than other
people but it's like we it's it's
stressful

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getting there and having to deal with,

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you know, and you you know how it is.

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It's it's always stressful, but he

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I guess that it's it I don't know.

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It's kind of a horrid thing to ~ put into
words,

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but they it

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Yeah, I don't know. It's just been ~ I
guess w with our hospital it was just

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it was like having a second family,

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really. I don't know if that's if that's
answering your question or not.

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It it really is and I feel like it can be
like the scariest place in

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the world to be, but simultaneously a very
supportive place to be and

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you can live in both worlds at the same
time.

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Yeah, ~ Henry doesn't like the he didn't
like the ER,

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he called it the bad part of the hospital.

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He likes he liked he liked the third floor
with the things.

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Yeah.

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Well, why don't you take us back to ver
the very beginning and figuring

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out that something was going on with Henry
and and what you and your wife saw?

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Yeah, it was our situation was a little ~
I'm gonna

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not gonna say unique, but we it was just a
normal Friday.

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I think it was a Friday, it was February
seventh of twenty twenty.

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~ I was at work, just drinking some coffee
and my wife my wife called Ashley,

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my wife called me and she says,

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you know, the Avallette monitor is going
off and

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I don't know if you know about the outlet
monitors,

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but yeah. So she's calling, but it's going
on,

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it's going off. It's sounds like an alarm
and a check that she said hard beat

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of two ~ 250, heart rate of 250.

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And you know, my first reaction was okay.

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Well, maybe just the monitors,

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you know. Maybe it's it's malfunction.

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She's like, I turned it off, I turned it
back on,

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it's still reading 250,

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and I was like.

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Okay, she's like, Well, I'm going to the
ER at children's hospital.

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I said, All right, babe, like I'll I'll
I'll meet you there,

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you know. And so I go, I tell my boss,

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you know, hey, I gotta go to the hospital
and stuff.

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And the whole way I'm thinking I like I'm
actually thinking was like,

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you know, maybe hopefully it's just a
malfunction and nothing's gonna be wrong.

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'Cause to that point nothing was wrong.

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He was just a healthy six week old little
baby.

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Nothing was wrong. We didn't think
anything.

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anything different. ~ and then we get to
the ER,

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they have us in triage unit ~ or triage
room.

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And the nurses there,

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they they were great. I do remember it's
it's been six years,

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but I do remember them being like,

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why y'all here? Like outlet monitoring to
kind of like,

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you know, kind of okay. You know,

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but then they

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To their credit, like they they they ran
tests,

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they they did blood work right away.

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~ I know you hear some horror stories
where they pe parents just get dismissed,

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but we weren't. ~ and the blood work came
back about an hour,

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they said severely anemic. ~ they still
didn't know what was going on.

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They said his hemoglobin was five point
two and that they were gonna start ~

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You know, like get us get us ready to go
up to the PQ,

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but that was still eight hours later.

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We were in triage for eight hours till
they could get our room ready.

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But that that was it. It was ~ healthy
literally

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one second and life changed the next.

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Yeah, getting admitted to the pediatric
ICU from the ER with a six six week

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old just has to throw you 'cause you're
like,

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okay, now I'm in go mode and now I'm
terrified for for my child.

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Once you got to the PICU, what did they do
and how did they care for you?

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~ I guess I wish it's it's been so long,

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but I I remember just everyone's very
calm.

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You you would think it would you would
think it wouldn't be calm,

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but everyone's very calm to make you feel
they make you feel as ease as they can,

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you know, just always always like say this
is what's gonna this is what's going on,

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this is what we think's happening,

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this is what is happening. ~ and just ~
the nursing staff and everybody there

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is just great. And it might be that the
hospital is brand new,

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like it it opened.

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in November of twenty nineteen and we're
there,

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February of twenty twenty. ~ but I I I
think just the the staff was just great.

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~ the only the only hiccup I think

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we had was before they moved us up there,

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they said, Hey, y'all gonna go see
hematology.

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And then whenever we got up there,

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they said the oncologists are coming

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And me I didn't know first of I didn't
know what hematology meant

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and I definitely didn't know what oncology
meant.

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So I was like, So they said, you know,

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oncology's coming to meet you.

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And Ashley looked at me, she's in,

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she's medical. So she's ~ I let her was
What's oncology?

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And she's you know, that's cancer.

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And I was like, Well, they said
hematology,

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so they were no. It we we put it together.

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It's oncology, hematology. We just,

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you know, they we just misspoke.

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It didn't say hematology. But but that was
like the one hiccup that kind of got us

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Not really knowing what was going on.

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Yeah, that's so true. Of ~ hematology,

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oncology are usually kind of slotted
together,

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especially within hospitals, and the
doctors work so closely together,

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but they can feel like two very different
meanings.

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And sometimes the words just you don't
even understand what they mean,

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like you said. What did they discover
during that hospital stay or shortly
after?

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they just severely anemic and they really
didn't have a diagnosis for him.

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They ended up being idiopathic aplastic
anemia after after three days.

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He had I think five blood transfusions in
three days just to get his blood up.

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~ and it was like it was like constantly
give him a bag and another

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bag and another bag. It was it felt it was
constantly being,

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you know, transfused just to get his blood
back up.

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Yeah.

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And it was you know,

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it was that that's what it was,

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and they said, Hey, look, come back for
labs in two days.

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You know, so we were in the hospital all
weekend and right back like

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two days later to get labs and see where
his hemoglobin was,

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which it was low again, so you know,

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schedule he go in for labs and then
schedule blood transfusion the same day.

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Since you kind of admitted and said out
loud you didn't know a

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lot about medical terminology and what to
expect in the hospital,

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when do you feel like you finally got your
groove with understanding

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how the the system works?

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It it took a while and I still don't I
still don't know what the word

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~ especially not with like my chart.

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That's that's like Ashley, she's a rock
star.

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She's the one that would take care of all
the stuff because

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~ I wouldn't I did like a few research
when we kinda didn't know what was going
on,

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like, it could be this, it could be this.

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And the first thing I looked up was,

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Hey, your child's gonna die and I'm like,

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Okay, I'm done and I'm done looking at
I'll let I will let the doctors tell me.

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what's going on. I don't need to do my own
my own research,

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but that was my that was my coping or not
coping,

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but that my hey, I don't need to be doing
my own research.

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Yeah. That must mean you had like a level
of trust with the team that

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was taking care of you.

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Yeah. ~ yeah, we love we love our doctor.

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And then, you know, just to be it I guess
another thing comes with like saying,

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Hey, you're we're transferring you to our
St.

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Jude floor, which I didn't even know we
had.

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~ and then being part of St. Jude,

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you get another sense of, hey,

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these are like some of the best,

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if not, if not the best people.

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When did you kind of start to see some of
the

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I guess the impact of hospitalizations on
on Henry and really start

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to to see that I'm gonna have to step up
and advocate for him and really find

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the best way to support him because y'all
are all living in fight or flight mode.

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Yeah. it was really once we got once we
got we we

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we had to get used to ~ you know hospital
we we had to get used to going

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to the hospital every week. It was ~ I
think at first it was every Wednesday

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and we were there for like ten to twelve
hours.

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~ 'cause you had to get you know get the
labs,

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get the

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Get the labs drawn, then have to find a
match.

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Then it takes eight hours for blood
transfusion.

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And then we started going every two weeks.

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~ once we figured out, hey, we could do
labs on Wednesday and then

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do do a transfusion two days later.

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So we're not there all day. We could they
could get the blood ready.

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~ it was really one once we got settled

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and able to probably about a year whenever
we were like,

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hey, we need a after like the initial
shock,

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right? And

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We're like we we need to do something.

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We need to start getting blood drives
together because it's always a blood
drive.

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There's always a blood shortage.

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And then this was during twenty twenty
where no one was giving blood rates.

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It was

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Well.

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Or it was very much it was lower than
normal,

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right? 'Cause of the restrictions and ~ I
know there was one time we

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one time we we waited like they had to
admit us into the hospital because

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we didn't get the blood till like four.

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You know, so they had to admit us to the
hospital to finish the blood

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and then we didn't end up leaving till
like one AM.

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But it it it was just that. It was,

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hey, we need to start advocating for more
like blood drives

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and just ~ so that's what we did.

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We d we we we made a blood drive,

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we did a a jambalaya fundraiser blood
drive and the fundraiser was

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for the clinic that we that we see,

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try to raise money for you know for them.

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Yeah. I wonder if because you've gone
through the process yourself,

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you can kind of help explain what aplastic
anemia is in your son's case

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and how do you explain it to like your
family and friends to describe his
diagnosis?

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Yeah.

226
00:13:49,641 --> 00:13:50,641
The

227
00:13:50,031 --> 00:13:54,035
the easiest way is you you say bone marrow
failure and then the next thing's like,

228
00:13:54,035 --> 00:13:55,676
well, okay, well, what's bone marrow
failure?

229
00:13:55,676 --> 00:14:01,360
It's he he can't create his own blood or
he couldn't create his own blood.

230
00:14:01,360 --> 00:14:06,167
~ and I was pretty much across the board,

231
00:14:06,167 --> 00:14:09,847
it was mostly it was mostly red blood
cells that he couldn't his

232
00:14:09,847 --> 00:14:14,471
his baby blood cells were dying off and
not being replenished.

233
00:14:14,471 --> 00:14:18,084
Or he wasn't replenishing, he was his old
cells were dying off,

234
00:14:18,084 --> 00:14:19,175
wasn't replenished anymore.

235
00:14:20,043 --> 00:14:21,965
~ and it's mainly the red ones.

236
00:14:21,965 --> 00:14:23,446
So that's that's basically what we say.

237
00:14:23,446 --> 00:14:25,928
We we tell people, yeah, he can't create
his own blood,

238
00:14:25,928 --> 00:14:30,091
and then so he's reliant on blood
transfusions to live.

239
00:14:30,091 --> 00:14:33,414
~ and then you you kind of just have to be
frank about it.

240
00:14:33,414 --> 00:14:35,416
Like at first at first it was like,

241
00:14:35,416 --> 00:14:36,837
you know, this, but then it's like,

242
00:14:36,837 --> 00:14:37,978
yeah, when I'm telling people,

243
00:14:37,978 --> 00:14:39,649
yeah, I was like, he he needs blood,

244
00:14:39,649 --> 00:14:41,731
he needs blood transfusions to live or
he's gonna die.

245
00:14:41,731 --> 00:14:43,062
~

246
00:14:42,539 --> 00:14:43,539
Yeah.

247
00:14:43,342 --> 00:14:48,947
it's it's it's i I feel it's better to
just to be frank right to the point.

248
00:14:50,003 --> 00:14:51,759
Hey, this is th this is serious,

249
00:14:51,759 --> 00:14:54,760
you know, it's not it's not like Yeah.

250
00:14:53,599 --> 00:14:54,599
Sugar coating.

251
00:14:54,781 --> 00:14:55,781
Right.

252
00:14:57,471 --> 00:15:02,473
I feel like I've talked to some other dads
on the podcast who often carry

253
00:15:02,473 --> 00:15:06,585
a weight that is unnoticed, of kind of
having to be the strong one

254
00:15:06,585 --> 00:15:09,666
and just like your wife is too,

255
00:15:09,666 --> 00:15:16,169
in a different way. Have you talked to
other dads or caregiving dads about what

256
00:15:16,169 --> 00:15:21,942
the experience of like is being the father
figure in a family when your life

257
00:15:21,942 --> 00:15:25,163
is turned upside down by a children's
hospitalization?

258
00:15:27,515 --> 00:15:34,190
No, n not really. just because we I have ~
I would love

259
00:15:34,190 --> 00:15:39,154
to talk to some, but we we just n I I
guess just never in my my experience have

260
00:15:39,154 --> 00:15:40,846
I had the opportunity, I guess.

261
00:15:40,846 --> 00:15:43,591
~ you know, when when you're at the
hospital,

262
00:15:43,591 --> 00:15:48,582
it's kind of like you you see another
another family there and it's ~ it's like

263
00:15:48,582 --> 00:15:51,314
hey you're you know, they're usually in
the infusion side or they're

264
00:15:51,915 --> 00:15:54,077
you we're my case we're at the St.

265
00:15:54,077 --> 00:15:57,009
Jude Clinic, so a lot of the kids are
getting like their chemo and it's like

266
00:15:57,765 --> 00:16:00,767
we just wait, but also you you don't want
to be you know,

267
00:16:00,767 --> 00:16:02,949
you don't want to be with them in their in
their little pod.

268
00:16:02,949 --> 00:16:04,270
You want to be in your little pod too.

269
00:16:04,270 --> 00:16:09,334
So yeah. ~ we just we we've we've made
friends and stuff,

270
00:16:09,334 --> 00:16:11,945
but we don't really talk about the the
experience,

271
00:16:11,945 --> 00:16:15,135
if that makes if I'm not answering your
question.

272
00:16:15,135 --> 00:16:18,721
I've I've listened to a lot of podcasts
and I've listened to the to

273
00:16:18,721 --> 00:16:22,373
the dad's point of view and stuff and I I
agree with a lot of their stuff.

274
00:16:22,373 --> 00:16:24,695
~ you know because

275
00:16:27,091 --> 00:16:30,893
It is it is I don't know, it's it is
different.

276
00:16:30,893 --> 00:16:34,425
You know, like Ashley took care of the she
had a lot of the scheduling.

277
00:16:34,425 --> 00:16:35,915
She had a lot of stuff on her plate.

278
00:16:35,915 --> 00:16:40,668
~ so I was just there to anytime she
needed something else,

279
00:16:40,668 --> 00:16:44,740
I would I'd be the one, hey, I will I will
take off work to go and be

280
00:16:44,740 --> 00:16:49,703
in in the hospital and it worked out
because I was able to take to switch

281
00:16:49,703 --> 00:16:50,703
my work schedule.

282
00:16:51,925 --> 00:16:53,426
To be able to be the one that,

283
00:16:53,426 --> 00:16:55,548
hey, on a Wednesday, I on a random
Wednesday,

284
00:16:55,548 --> 00:16:57,490
I could be the one to bring them to labs.

285
00:16:57,490 --> 00:17:01,484
I could go in late. then the way it worked
out,

286
00:17:01,484 --> 00:17:04,927
we would schedule it to where I was off on
the days we get

287
00:17:04,927 --> 00:17:07,832
we needed the transfusions. So that yeah,

288
00:17:07,832 --> 00:17:11,053
it was we we made it work,

289
00:17:11,053 --> 00:17:14,846
we you know. Yeah. But but to your to your
original question,

290
00:17:14,846 --> 00:17:17,419
I I don't really think I've spoken to any
other dads.

291
00:17:18,763 --> 00:17:22,470
Do you feel like that's part of the reason
you wanted to come on and talk about your

292
00:17:22,470 --> 00:17:23,470
perspective?

293
00:17:25,331 --> 00:17:28,204
Yeah, it it could be. ~ you know,

294
00:17:28,204 --> 00:17:33,609
come the the definitely that perspective
is way different,

295
00:17:33,609 --> 00:17:34,609
you know.

296
00:17:37,353 --> 00:17:38,740
And you guys have other kids at home,

297
00:17:38,740 --> 00:17:39,740
correct?

298
00:17:40,041 --> 00:17:44,958
Yes. Yeah, we have a ~ a three year old
girl and a six month little girl.

299
00:17:44,958 --> 00:17:45,958
Just had her.

300
00:17:46,195 --> 00:17:51,497
Okay. You mentioned ~ when we you filled
out

301
00:17:51,497 --> 00:17:58,379
the form before that eventually this Saint
Jude clinical staff became

302
00:17:58,379 --> 00:18:03,811
your extended family, so much so that I
know your son had like almost like

303
00:18:03,811 --> 00:18:08,192
a special name for the hospital floor that
he would go to because it was

304
00:18:08,192 --> 00:18:10,963
the name of his first nurse. Tell me a
little bit about that.

305
00:18:14,380 --> 00:18:16,842
yeah, he calls it he calls it Neek's
house.

306
00:18:16,842 --> 00:18:19,603
So anytime we pass by the the hospital,

307
00:18:19,603 --> 00:18:24,006
it's ~ it's really pretty if you've been
through through Baton Rouge.

308
00:18:24,006 --> 00:18:29,460
it's you you're on I ten and you're going
and and it's the children's hospital

309
00:18:29,460 --> 00:18:34,133
off to the side and it's ~ it's a it's a
really pretty building,

310
00:18:34,133 --> 00:18:36,745
you know, it's anytime we go by he's looks
at it and he's like,

311
00:18:36,745 --> 00:18:38,156
It's Neek's house, it's Neeks House.

312
00:18:38,156 --> 00:18:39,637
But yeah, buddy, it's you know,

313
00:18:39,637 --> 00:18:42,099
and he we always say, we gotta go to Neeks
House for

314
00:18:43,083 --> 00:18:45,754
for labs or whatever and you know then he
says like I don't want to go

315
00:18:45,754 --> 00:18:49,055
to the I don't want to go to the to the
bad part of Nick's house,

316
00:18:49,055 --> 00:18:51,025
which is the ER, which we talked about.

317
00:18:51,025 --> 00:18:56,427
~ but yeah they they became our our our
family.

318
00:18:56,427 --> 00:19:02,698
~ even ~ yeah his first whenever

319
00:19:02,698 --> 00:19:06,789
we were but they were trying to get him an
IV the very first the very first

320
00:19:06,789 --> 00:19:12,171
day whenever whenever we went in they
couldn't get an IV he was he was

321
00:19:13,127 --> 00:19:14,388
Dehydrate, not not dehydrated,

322
00:19:14,388 --> 00:19:16,308
but it's mean six-week old veins.

323
00:19:16,308 --> 00:19:20,190
You can't. So they actually called up one
of the nurses.

324
00:19:20,190 --> 00:19:21,921
They said, Hey, well, they told us early,

325
00:19:21,921 --> 00:19:26,243
hey, look, we're getting someone with 20
years experience coming

326
00:19:26,243 --> 00:19:30,975
in because they couldn't, they his little
his hands were just all beat

327
00:19:30,975 --> 00:19:35,257
up from the from the sticks. And ~ yeah,

328
00:19:35,257 --> 00:19:39,038
Miss Joan came in and she looked at him,

329
00:19:39,038 --> 00:19:40,079
looked at him

330
00:19:40,277 --> 00:19:42,248
For first thing she boom, just she's like,

331
00:19:42,248 --> 00:19:43,428
we're like, thank you thing. And she's
like,

332
00:19:43,428 --> 00:19:45,030
you know, I I've been doing it for twenty
years.

333
00:19:45,030 --> 00:19:49,032
you know. Wow, she's like, I'm the one
they call when they can't get an IV.

334
00:19:49,032 --> 00:19:50,333
And then we didn't know it at the time.

335
00:19:50,333 --> 00:19:53,310
~ they just said upstairs. They didn't
say,

336
00:19:53,310 --> 00:19:57,577
you know, whatever. And then they
transferred us to the PICU which I think

337
00:19:57,577 --> 00:19:59,298
was like the fourth floor, fourth or fifth
floor.

338
00:19:59,298 --> 00:20:01,699
~ and then like two days later,

339
00:20:01,699 --> 00:20:05,391
that's when they said, Hey, we're gonna be
on the on the St.

340
00:20:05,391 --> 00:20:08,242
Jude floor for the, you know, for the rest
of his treatment.

341
00:20:09,525 --> 00:20:12,587
But just so that was our first experience,

342
00:20:12,587 --> 00:20:16,390
right? Was the first, the first Ms.

343
00:20:16,390 --> 00:20:21,433
Joan, the first nurse that got him his
first IV stick when no one else could.

344
00:20:21,433 --> 00:20:28,168
And then to have n ~ Monique was the one
who like took care of his little baby,

345
00:20:28,168 --> 00:20:33,072
you know. They they grew up or he grew up
he grew up in the hospital

346
00:20:33,072 --> 00:20:35,934
and they grew up they used they watched
him grow up to,

347
00:20:35,934 --> 00:20:37,475
you know, it's

348
00:20:39,015 --> 00:20:42,511
It's ~ yeah. It's just I don't know.

349
00:20:44,265 --> 00:20:48,496
Yeah. One of the other things you said was
that

350
00:20:49,415 --> 00:20:53,898
at some point he stopped crying when he
got poked.

351
00:20:53,898 --> 00:20:59,159
And that that was, you know, you kind of
anticipate you want your child

352
00:20:59,159 --> 00:21:01,890
to not cry during a poke or something like
that,

353
00:21:01,890 --> 00:21:03,560
right? Because you don't want them to feel
the pain.

354
00:21:03,560 --> 00:21:08,722
But then there's the other side when
they've endured so much and they just stop

355
00:21:08,722 --> 00:21:11,972
crying because they're getting poked and
because they're used to it.

356
00:21:11,972 --> 00:21:13,723
And that was kind of a moment for

357
00:21:14,047 --> 00:21:19,061
your family to realize we need some extra
psychosocial support.

358
00:21:19,061 --> 00:21:21,117
Can you speak a little bit about that?

359
00:21:43,251 --> 00:21:44,251
Yeah. ~

360
00:21:48,071 --> 00:21:49,071
One thing they don't tell you.

361
00:21:48,885 --> 00:21:49,885
~

362
00:21:52,969 --> 00:21:56,845
It's a I mean you you expect them to cry
when you're holding down.

363
00:21:56,845 --> 00:22:03,777
~ don't expect them not to cry to get
poked 'cause they're they're expecting it.

364
00:22:06,859 --> 00:22:08,871
And that really happened with his with his
port,

365
00:22:08,871 --> 00:22:15,096
because you know we had to get the port in
for to make his his the medicine

366
00:22:15,096 --> 00:22:21,241
he was taking at the time just easier to
access access because his ~ three years

367
00:22:21,241 --> 00:22:27,796
of getting IVs in the wrists, his ~ his
veins were beginning to valve,

368
00:22:27,796 --> 00:22:29,578
so they weren't able to get it.

369
00:22:29,578 --> 00:22:32,400
So they'll like look the best best course
of action is to get a port in.

370
00:22:32,400 --> 00:22:35,823
~ it just you know.

371
00:22:36,501 --> 00:22:37,812
Quality of life would be easier,

372
00:22:37,812 --> 00:22:39,813
you know, besides the fact that,

373
00:22:39,813 --> 00:22:41,755
you know, every time he got a fever we had
to go in.

374
00:22:41,755 --> 00:22:48,500
~ but that's you know, that's the the the
port was the best thing

375
00:22:48,500 --> 00:22:53,513
to happen. ~ it was you know,

376
00:22:53,513 --> 00:22:59,928
it except whenever the he it took about
maybe a month and him just screaming,

377
00:22:59,928 --> 00:23:04,091
screaming, then he just he would just walk
up and like sit he would just

378
00:23:04,511 --> 00:23:06,012
Or he they had him in the chair for the
port,

379
00:23:06,012 --> 00:23:10,073
but he would like lay down in the chair
and just you you kind of see his face.

380
00:23:10,073 --> 00:23:14,025
He would like leap lean back and his face
would just like like a shadow,

381
00:23:14,025 --> 00:23:17,306
like shadow would go over his face and he
would just wait for it.

382
00:23:17,306 --> 00:23:21,318
And you know, there's a team of four
nurses in there because you have to,

383
00:23:21,318 --> 00:23:24,685
you know, people don't know about the
about the port,

384
00:23:24,685 --> 00:23:27,405
but you have to you know have to be a as
sterile of an environment

385
00:23:27,405 --> 00:23:29,941
as possible to have to clean it and
everything.

386
00:23:29,941 --> 00:23:32,396
So there's always like five nurses in
there and they all have they

387
00:23:32,396 --> 00:23:33,443
all have their masks on, you know.

388
00:23:33,443 --> 00:23:34,443
That's not

389
00:23:34,523 --> 00:23:36,144
It kinda it's kinda scary for it,

390
00:23:36,144 --> 00:23:41,399
you know. ~ so and then he he's just
sitting there and just ooh and then poke

391
00:23:41,539 --> 00:23:44,061
and then okay. Or that that's it.

392
00:23:44,061 --> 00:23:47,113
And like the first time that happened,

393
00:23:47,113 --> 00:23:49,095
like me and Ashley kinda like looked at
each other like,

394
00:23:49,095 --> 00:23:52,628
you know, and then we know you tear up
'cause you're not expecting like,

395
00:23:52,628 --> 00:23:57,932
okay, now it's just horrid of he's just
accepted it like like you were saying,

396
00:23:57,932 --> 00:23:58,932
it's just

397
00:24:02,279 --> 00:24:05,051
not not not something you would expect.

398
00:24:05,051 --> 00:24:06,473
And then and then it's like, you know,

399
00:24:06,473 --> 00:24:09,656
it's he's dealing with it so well,

400
00:24:09,656 --> 00:24:14,330
but then ~ internally he's not.

401
00:24:14,330 --> 00:24:19,935
'cause that like what what you're alluding
to with the ~

402
00:24:22,907 --> 00:24:28,571
~ mental aspect of it, he he was having
trouble at daycare,

403
00:24:28,571 --> 00:24:32,564
like not listening. And we weren't really
seeing it at at the house.

404
00:24:32,564 --> 00:24:34,321
I know like something would happen and it
was like,

405
00:24:34,321 --> 00:24:36,817
is it just a toddler not getting his way?

406
00:24:36,817 --> 00:24:40,720
But ~ one of the nurses at St.

407
00:24:40,720 --> 00:24:45,204
Jude said, Why don't you why don't you get
him to go see the pediatric therapy?

408
00:24:45,204 --> 00:24:49,627
~ that he got him analyzed and he had

409
00:24:51,267 --> 00:24:52,327
I forgot the medical term for it,

410
00:24:52,327 --> 00:24:54,982
but it's like he was stuck in he was stuck
in fight or flight.

411
00:24:54,982 --> 00:24:56,183
So

412
00:24:55,480 --> 00:24:56,480
Yeah.

413
00:24:56,183 --> 00:24:58,917
he had to deal with so we deal with dealt
with that for about two years

414
00:24:58,917 --> 00:25:03,523
of him going to therapy to to get out of
that.

415
00:25:06,681 --> 00:25:12,200
To get out of that ~ that rut he was in
because you know,

416
00:25:12,200 --> 00:25:14,944
six weeks old getting poked every week.

417
00:25:14,944 --> 00:25:15,944
Yeah.

418
00:25:17,983 --> 00:25:23,945
It you know his body never ~ what did they
describe it as?

419
00:25:23,945 --> 00:25:26,785
You have a little baby and we just went
through it because our

420
00:25:27,006 --> 00:25:28,866
our daughter's six months old,

421
00:25:28,866 --> 00:25:32,907
you they have this little this little like
jitter kicks,

422
00:25:32,907 --> 00:25:36,268
whatever. He they they equated it to he
never got out of that.

423
00:25:36,268 --> 00:25:39,499
Like you're supposed to you're supposed to
grow out of that in like six months.

424
00:25:39,499 --> 00:25:40,769
Well, he never grew out of it.

425
00:25:40,769 --> 00:25:46,871
So his body was either it was fighting
with itself to either be at

426
00:25:47,137 --> 00:25:52,762
at rest or completely one hundred like I
gotta I gotta get out of here 'cause

427
00:25:52,762 --> 00:25:58,607
I don't know. I don't know if this thing
you're telling me no at home,

428
00:25:58,607 --> 00:25:59,757
like hey you can't touch that.

429
00:25:59,757 --> 00:26:02,630
Are you are you then gonna, you know,

430
00:26:02,630 --> 00:26:09,215
poke me or get me, you know So that's his
his brain was anything,

431
00:26:09,215 --> 00:26:13,498
any discomfort is gonna be met with like
something he doesn't want to do,

432
00:26:13,498 --> 00:26:15,991
some kind of sort of pain and so

433
00:26:16,697 --> 00:26:23,464
But he we Yeah. But we we ~ the the
pediatric therapy that we went to,

434
00:26:23,464 --> 00:26:27,669
they were they were great. And ~ and he's
doing he's doing really well now.

435
00:26:28,653 --> 00:26:33,813
What would you say to another parent who's
watching their child kind

436
00:26:33,813 --> 00:26:38,363
of have that flight response? What would
you recommend that they do?

437
00:26:40,375 --> 00:26:43,417
Definitely definitely get it checked out.

438
00:26:43,417 --> 00:26:49,402
~ like have him go go to a pediatric
therapy clinic and have him check

439
00:26:49,402 --> 00:26:54,166
it out because it it it did wonders for
for us in home life too,

440
00:26:54,166 --> 00:26:59,771
because he would he we and then we could
see it w him working through his

441
00:27:02,381 --> 00:27:05,679
His stuff work like work working through
his own emotions and things.

442
00:27:05,679 --> 00:27:08,966
It 'cause it it just calmed everything
else down because it was always

443
00:27:11,437 --> 00:27:14,138
the slightest little thing might set him
off and then it's then then

444
00:27:14,138 --> 00:27:15,377
you start getting stressed 'cause he's
like,

445
00:27:15,377 --> 00:27:18,749
I didn't you know, so it's you're trying
to have a Right.

446
00:27:18,749 --> 00:27:24,491
So definitely if if anything's and it it
trying to explain it.

447
00:27:24,491 --> 00:27:30,943
His his behavior wasn't it it it's very
much like is

448
00:27:30,943 --> 00:27:33,213
it just a two year old at the time,

449
00:27:33,213 --> 00:27:35,714
you know, 'cause he whatever. It's like
he's six now,

450
00:27:35,714 --> 00:27:38,735
but like at the time it's is it just a two
year old not getting their way?

451
00:27:39,329 --> 00:27:40,439
Or is it something we're right?

452
00:27:40,439 --> 00:27:47,017
So that was something very, very much like
we ~ we had to realize what

453
00:27:47,017 --> 00:27:50,500
it was. And and then it took it took an
outside source.

454
00:27:50,500 --> 00:27:53,813
Like it took it took his daycare teachers
saying,

455
00:27:53,813 --> 00:27:57,597
Hey, this is what's going on. And then we
talked to our nurses and it's like,

456
00:27:57,597 --> 00:27:59,519
Well, this might be this, you know.

457
00:28:00,885 --> 00:28:05,736
Yeah, it's it's so important to have like
these conversations with

458
00:28:05,736 --> 00:28:08,357
the trusted adults around your kids too,

459
00:28:08,357 --> 00:28:12,038
because some I've seen this too in like
siblings,

460
00:28:12,038 --> 00:28:14,049
although they're not the ones being poked,

461
00:28:14,049 --> 00:28:15,507
every time something does happen,

462
00:28:15,507 --> 00:28:20,471
mom and dad leave, go to the hospital and
it's just always good to have these extra

463
00:28:20,471 --> 00:28:25,562
eyes of people who love your child and
your family to say like,

464
00:28:25,562 --> 00:28:28,183
Hey, something I'm seeing this

465
00:28:29,027 --> 00:28:31,048
Have you thought about getting this type
of support,

466
00:28:31,048 --> 00:28:34,050
et cetera? Yeah.

467
00:28:34,050 --> 00:28:39,683
I feel like there's you also talked to me
a little bit about

468
00:28:39,683 --> 00:28:46,448
the win bars that LSU and the the victory
campaign

469
00:28:46,448 --> 00:28:48,759
on Facebook. Can you speak to that a
little bit?

470
00:28:50,263 --> 00:28:54,433
Yeah, that's that's something I I started
doing as a ~

471
00:28:57,037 --> 00:28:59,809
We you know, 'cause we were around that
time,

472
00:28:59,809 --> 00:29:01,030
I think it was like twenty-three,

473
00:29:01,030 --> 00:29:06,935
in his treatment, we were in the hospital
every twice a week,

474
00:29:06,935 --> 00:29:11,159
twice a month for four days. Like we would
go in on Friday,

475
00:29:11,159 --> 00:29:15,853
leave Monday night, ~ for his treatment
'cause we were trying to get

476
00:29:15,853 --> 00:29:18,565
his levels down for bone marrow
transplant.

477
00:29:18,565 --> 00:29:22,028
But then he had his iron off of his off of
his ~ liver.

478
00:29:22,028 --> 00:29:25,751
So it was just we're doing this big thing
and and we were just there and

479
00:29:27,343 --> 00:29:30,556
So you're in the infusion side on the the
way the the hospital the

480
00:29:30,556 --> 00:29:34,509
way the our hospital is. The third floor
you have the you have St.

481
00:29:34,509 --> 00:29:37,191
Judes clinic on one side, then you have
the infusion side on the other side.

482
00:29:37,191 --> 00:29:40,314
And ~ so it's us there every other week.

483
00:29:40,314 --> 00:29:45,318
So you start seeing all these other St.

484
00:29:45,318 --> 00:29:47,560
Judes patients and the kids, you know,

485
00:29:47,560 --> 00:29:50,463
the the you know they're

486
00:29:52,131 --> 00:29:54,372
I know some people think you know you're
at a hospital and you just have

487
00:29:54,372 --> 00:29:57,644
to stay in your room, but it's like very
much you could walk around with your with

488
00:29:57,644 --> 00:30:00,476
the IV poles and stuff. You could walk
around a little bit where you are.

489
00:30:00,476 --> 00:30:04,638
And I just had this this idea.

490
00:30:04,638 --> 00:30:07,795
~ I told the Ash was like,

491
00:30:07,795 --> 00:30:12,962
I was like, what if I start making Win
bars

492
00:30:14,143 --> 00:30:16,224
and giving them to every time we come in,

493
00:30:16,224 --> 00:30:18,806
every week and we come in, I can bring
like five and whoever's at

494
00:30:18,806 --> 00:30:21,367
the clinic or whoever's at in on the
infusion side.

495
00:30:21,827 --> 00:30:24,479
We could go and Henry could go and deliver
it to him.

496
00:30:24,479 --> 00:30:28,894
And so that was that's that that's
basically it because I was you know,

497
00:30:28,894 --> 00:30:32,097
then I had to figure out how to do it the
best way best way to do it and you know,

498
00:30:32,097 --> 00:30:37,882
find all the materials and and stuff
because ~ i people may not know what

499
00:30:38,002 --> 00:30:39,002
the L shoot windboard

500
00:30:38,959 --> 00:30:43,058
I was just about to say you have to for
for our non LSU Tiger fans,

501
00:30:43,058 --> 00:30:44,058
what is a win bar?

502
00:30:44,473 --> 00:30:50,088
So the the Win bar is a so we're in Tiger
Stadium before the football games,

503
00:30:50,088 --> 00:30:54,683
it hangs. It's a it's a the ri the the
original one is

504
00:30:54,683 --> 00:30:58,477
a goalpost from fifty eight to eighty
five.

505
00:30:58,477 --> 00:31:01,249
That when they they got new goalposts,

506
00:31:01,249 --> 00:31:04,843
they put they just put this section of
goalposts over the locker room.

507
00:31:06,943 --> 00:31:11,304
As they're wall as so every player that
runs through the tunnel into Tiger
Stadium,

508
00:31:11,304 --> 00:31:15,984
they hit this goal post that just it has
painted on it purple and gold just says

509
00:31:15,984 --> 00:31:20,867
win. And there's a plaque over it that
says,

510
00:31:20,867 --> 00:31:22,147
you know, in

511
00:31:23,065 --> 00:31:24,065
Thank you.

512
00:31:23,868 --> 00:31:25,548
Don't know what it's like, I don't know
the full thing,

513
00:31:25,548 --> 00:31:28,909
but it says, you know, basically that it's
a this goalpost stood

514
00:31:28,909 --> 00:31:34,691
in Tiger Stadium from 85 from ~ 58 to 85
and it represents

515
00:31:36,161 --> 00:31:38,714
It represents the threshold in a Tiger
Stadium that,

516
00:31:38,714 --> 00:31:42,237
you know, a commitment that's the the the
last line,

517
00:31:42,237 --> 00:31:47,553
sorry, rambling on. The last line is it's
a sign of commitment.

518
00:31:49,625 --> 00:31:50,625
Okay.

519
00:32:01,539 --> 00:32:03,953
Yeah, yeah. It says it's a sign of
commitment to do.

520
00:32:19,513 --> 00:32:21,792
A sign of commitment to do whatever it
takes for victory.

521
00:32:25,881 --> 00:32:27,525
So that the idea was.

522
00:32:31,638 --> 00:32:32,720
Give these kids

523
00:32:35,019 --> 00:32:36,497
It's fine. You know, they could

524
00:32:38,713 --> 00:32:42,679
Hang it above their hang it above their
their door frame.

525
00:32:45,185 --> 00:32:46,762
So when they're going for treatment,

526
00:32:46,762 --> 00:32:49,613
they go in the Yeah.

527
00:32:48,535 --> 00:32:49,535
Yeah.

528
00:32:50,038 --> 00:32:52,343
Sorry. my god, I love that.

529
00:32:53,167 --> 00:32:55,771
So and ~ each one each one's blessed.

530
00:32:55,771 --> 00:33:02,041
~ I get like I get like twenty at a time
and I bring to our to our church

531
00:33:02,041 --> 00:33:03,484
and I get our priest to bless all.

532
00:33:03,484 --> 00:33:04,484
So

533
00:33:04,323 --> 00:33:05,323
Wow.

534
00:33:04,907 --> 00:33:05,907
yeah.

535
00:33:08,175 --> 00:33:09,175
That's amazing.

536
00:33:09,859 --> 00:33:13,125
Yeah, so ~ yeah, so I started that.

537
00:33:13,125 --> 00:33:18,504
I started that just for them and then I
started mailing them around mailing around

538
00:33:18,504 --> 00:33:19,504
the country. So

539
00:33:20,501 --> 00:33:21,501
my gosh.

540
00:33:22,269 --> 00:33:25,347
It's a ~ a joke that it's a one big
recruiting tool.

541
00:33:25,347 --> 00:33:28,095
To get him to to get them to come to LSU.

542
00:33:28,095 --> 00:33:29,095
That's the

543
00:33:29,007 --> 00:33:31,294
No, Ellis need L S U needs to start paying
you.

544
00:33:31,575 --> 00:33:32,575
Right,

545
00:33:31,756 --> 00:33:32,756
yeah, right.

546
00:33:34,775 --> 00:33:39,201
man. Yeah. That's amazing.

547
00:33:39,201 --> 00:33:41,334
I'm so glad that you acted on that idea.

548
00:33:41,334 --> 00:33:43,227
That like creative

549
00:33:45,645 --> 00:33:49,979
Yeah, and it's ~ it's it's it's it's kind
of a weird thing to get,

550
00:33:49,979 --> 00:33:53,942
right? ~ I know it it open it up,

551
00:33:53,942 --> 00:33:56,824
it's a the ones I use a two foot just
thing,

552
00:33:56,824 --> 00:33:59,106
it's just a P V C pipe, right?

553
00:33:59,106 --> 00:34:04,361
With painted Win on it. ~ it's very I know
me Mr.

554
00:34:04,361 --> 00:34:09,225
Mark, you say it's a very it's a very
novel very not novelty thing to get,

555
00:34:09,225 --> 00:34:10,225
so

556
00:34:10,063 --> 00:34:12,018
I love it, but it's like a nod to where
you're from.

557
00:34:12,018 --> 00:34:13,953
Does

558
00:34:12,566 --> 00:34:13,566
Right.

559
00:34:13,953 --> 00:34:16,038
does LSU know you've been doing this?

560
00:34:16,973 --> 00:34:18,627
I don't I don't think they do.

561
00:34:18,627 --> 00:34:21,814
~ I know I I tag in the in the post,

562
00:34:21,814 --> 00:34:23,619
but I don't I don't know if they if they
do.

563
00:34:24,121 --> 00:34:25,900
Yeah. ~

564
00:34:26,488 --> 00:34:31,060
One of the things that I find most amazing
about you,

565
00:34:31,060 --> 00:34:37,453
Ryan, is just how lucky like Henry is

566
00:34:37,453 --> 00:34:38,674
to have you as his dad.

567
00:34:39,120 --> 00:34:44,082
it's not easy to come on and talk about
the hardest moments of your life,

568
00:34:44,082 --> 00:34:49,365
but I can tell that you're doing it number
one because

569
00:34:49,990 --> 00:34:56,087
awareness about aplastic anemia and what
families go through needs to be
understood,

570
00:34:56,087 --> 00:34:57,889
I think, by the general public.

571
00:34:57,889 --> 00:35:03,415
And the second part is that I can tell
that you just love him so much.

572
00:35:03,415 --> 00:35:07,900
What are what are some of your favorite
parts of being Henry's dad?

573
00:35:09,006 --> 00:35:10,006
Yeah.

574
00:35:11,667 --> 00:35:16,141
And it was with a cliched answers like
watching him grow up,

575
00:35:16,141 --> 00:35:18,903
but yeah. He he he's so funny.

576
00:35:18,903 --> 00:35:25,638
~ you know, we I it's the story I like to
tell is we're I was picking

577
00:35:25,638 --> 00:35:31,433
up from daycare one day and we're driving
home and ~ I had just I had just shaved

578
00:35:31,433 --> 00:35:37,058
my head for St. Baldrick's Foundation and
we were driving and ~

579
00:35:37,078 --> 00:35:40,541
he saw this he saw this this bird outside,

580
00:35:40,541 --> 00:35:41,541
it was a

581
00:35:41,577 --> 00:35:43,108
It was a it was a vulture, but he was
like,

582
00:35:43,108 --> 00:35:44,899
Dad, it's a it's a it's an eagle.

583
00:35:44,899 --> 00:35:47,060
I was like, it probably is, but it's an
eagle.

584
00:35:47,060 --> 00:35:48,851
He's like I was like, What kind of eagle
is it?

585
00:35:48,851 --> 00:35:49,862
He's like, It's a black eagle.

586
00:35:49,862 --> 00:35:51,442
I was like, yeah, black eagles are cool.

587
00:35:51,442 --> 00:35:52,903
He's like, No, it's a bald eagle,

588
00:35:52,903 --> 00:35:55,575
like your head and I'm like and I'm just
like,

589
00:35:55,575 --> 00:35:56,575
you what?

590
00:35:56,833 --> 00:35:57,833
I like

591
00:35:58,781 --> 00:36:02,357
Like So he he he's very quick witted,

592
00:36:02,357 --> 00:36:05,541
which is good. and he's he

593
00:36:07,711 --> 00:36:08,711
He ~

594
00:36:10,655 --> 00:36:15,319
He loves he he loves so much. He's so good
with with Piper,

595
00:36:15,319 --> 00:36:19,132
the our our youngest. ~ he wants to take
care of her.

596
00:36:19,132 --> 00:36:22,785
He's it's it's his she's her she is his
baby.

597
00:36:22,785 --> 00:36:27,149
He he's just a big helper. ~ you know,

598
00:36:27,149 --> 00:36:29,821
he he has his he has his he has his
moments,

599
00:36:29,821 --> 00:36:33,564
he's sick, so he has his ~ his attitude
moments.

600
00:36:33,564 --> 00:36:34,564
Yeah.

601
00:36:34,225 --> 00:36:36,678
Hope them too and I'm forty, so Yeah,

602
00:36:36,678 --> 00:36:37,678
for sure.

603
00:36:37,732 --> 00:36:38,732
But

604
00:36:37,993 --> 00:36:43,474
no, he he's ~ he shows he he has interests
and

605
00:36:43,474 --> 00:36:45,739
I just love I'm trying to get

606
00:36:48,469 --> 00:36:51,572
I just love I love trying to like just
foster his his interests and stuff

607
00:36:51,572 --> 00:36:55,615
and he he loves he loves like painting and
art and ~ he's in piano,

608
00:36:55,615 --> 00:36:56,629
so

609
00:36:56,833 --> 00:36:57,833
So cool.

610
00:36:57,389 --> 00:36:58,389
yeah.

611
00:36:59,989 --> 00:37:03,978
What are some of the things you've learned
about yourself since becoming Henry's

612
00:37:03,978 --> 00:37:05,371
dad that you may not have known before?

613
00:37:08,118 --> 00:37:12,391
maybe on like the ~ I don't know if it's
gonna be like a negative or not,

614
00:37:12,391 --> 00:37:15,143
but I know I ~ deal with stress
differently.

615
00:37:15,143 --> 00:37:18,746
~ I kinda do the ~ the retail therapy,

616
00:37:18,746 --> 00:37:20,227
~ dealing with stress.

617
00:37:21,997 --> 00:37:24,280
What is your d retail drug of choice,

618
00:37:24,280 --> 00:37:25,280
Ryan?

619
00:37:26,313 --> 00:37:30,855
Well I ~ board games. I kinda went crazy.

620
00:37:30,855 --> 00:37:34,027
Yeah, I kinda went crazy with the board
games and they're not cheap,

621
00:37:34,027 --> 00:37:37,859
so I kinda

622
00:37:35,778 --> 00:37:37,994
Yeah, that's amazing.

623
00:37:39,180 --> 00:37:42,347
It's a ~ it's a Star Wars it's one of
those Star Wars games.

624
00:37:42,347 --> 00:37:45,894
It's a ~ board game, yeah. I love it.

625
00:37:45,894 --> 00:37:48,785
so I d I I kinda went crazy. I bought I
bought a whole bunch whenever

626
00:37:48,785 --> 00:37:52,998
we were going through it. And then ~ maybe
that was my

627
00:37:53,648 --> 00:37:56,005
My coping mechanism was like, let me buy
all these games.

628
00:37:56,794 --> 00:37:59,306
You're like, Yes, these will make us happy
and feel good.

629
00:37:59,224 --> 00:38:00,224
Yeah,

630
00:37:59,534 --> 00:38:01,730
exactly. And then and then they just
stayed in the closet.

631
00:38:02,615 --> 00:38:04,186
Right. ~ my gosh.

632
00:38:05,050 --> 00:38:07,337
But I on a I guess on a positive note,

633
00:38:07,337 --> 00:38:08,337
it's that

634
00:38:12,920 --> 00:38:16,161
So we we I mean, I guess me me and Ashley
together,

635
00:38:16,161 --> 00:38:20,493
we ~ like we've been through the like
we've been through that and that

636
00:38:20,493 --> 00:38:23,365
was that was we we've been through and
that was our,

637
00:38:23,365 --> 00:38:26,816
you know, six year we still dealing with
it not as much,

638
00:38:26,816 --> 00:38:30,828
but we could go through that, we could we
get through anything.

639
00:38:30,828 --> 00:38:31,828
So

640
00:38:33,430 --> 00:38:37,263
Is his treatment protocol as intense as it
once was or

641
00:38:37,910 --> 00:38:42,891
No, not at all. ~ we the thick of

642
00:38:42,891 --> 00:38:46,820
it was late twenty three. ~

643
00:38:50,308 --> 00:38:54,973
thing. ~ yeah. Yeah, he's been three years
transfusion free.

644
00:38:54,973 --> 00:38:58,296
So it'd be he'll be three year three years
in May.

645
00:38:58,296 --> 00:39:01,199
So his last transfusion was twenty three.

646
00:39:03,618 --> 00:39:04,708
It was a

647
00:39:07,086 --> 00:39:13,238
It was ~ he had a transfusion in February
of twenty-three

648
00:39:13,318 --> 00:39:17,819
and had a reaction. First time having a
reaction in in three years.

649
00:39:17,819 --> 00:39:21,480
And ~ talk about,

650
00:39:21,480 --> 00:39:27,882
you know, hospital staff. ~ I was I was
just looking at him and I was like,

651
00:39:27,882 --> 00:39:29,949
he wasn't looking the same. I was looking
at him,

652
00:39:29,949 --> 00:39:32,763
he he he started he was all red right here
and looked at his ear,

653
00:39:32,763 --> 00:39:34,043
his ears started getting puffy.

654
00:39:34,043 --> 00:39:36,244
And I I kind of just like you know,

655
00:39:36,244 --> 00:39:37,244
let him be in the

656
00:39:37,344 --> 00:39:39,755
in his chair and I'll I walked up to the
nurse's station.

657
00:39:39,755 --> 00:39:41,175
It's in you know in the middle.

658
00:39:41,175 --> 00:39:45,966
And I was like, hey, ~ something's not
right.

659
00:39:45,966 --> 00:39:50,257
And and I'm very like not I'm very like
very oblivious to a lot of things.

660
00:39:50,257 --> 00:39:53,658
And I was like, ~ something's not right
with Henry.

661
00:39:53,658 --> 00:39:57,990
Like his ears all red. And so like nurse
walks in and she's like she looks

662
00:39:57,990 --> 00:40:00,430
at him and then she says I don't remember
what happened.

663
00:40:00,430 --> 00:40:05,792
She said something and the next thing I
know there's every person on the floor

664
00:40:05,872 --> 00:40:06,872
is in our

665
00:40:07,714 --> 00:40:09,305
like five

666
00:40:08,772 --> 00:40:09,772
Yeah.

667
00:40:09,305 --> 00:40:14,530
by five ~ cubicle basically and I was like
I don't know what's going on

668
00:40:14,530 --> 00:40:17,742
so I'm like in the corner and they're like
going there so he they were like

669
00:40:17,742 --> 00:40:22,015
we just have a reaction so they gave him
some an epipen some Benadryl

670
00:40:22,156 --> 00:40:24,858
~ and they stopped the transfusion.

671
00:40:24,858 --> 00:40:30,132
We'd only been there for like two hours
and they said we you know ~ we're

672
00:40:30,132 --> 00:40:32,324
not gonna transf we're gonna stop the
transfusion today.

673
00:40:32,324 --> 00:40:37,124
I think we set it for like the next day or
a couple of days to come back and re

674
00:40:37,602 --> 00:40:40,414
re-get his labs done and ~ see where he
was.

675
00:40:40,414 --> 00:40:45,647
So that was in February and then he we got
his ~ transfusion then again

676
00:40:45,647 --> 00:40:50,030
in May because he was on he was on like
two months every two months

677
00:40:50,030 --> 00:40:52,722
at that point because it all depend
depended on his hemoglobin.

678
00:40:52,722 --> 00:40:57,405
~ in May he had his last transfusion

679
00:40:57,405 --> 00:41:03,920
~ and we were scheduling to go we were
scheduling

680
00:41:03,920 --> 00:41:06,872
to go to Memphis to the main main campus

681
00:41:07,322 --> 00:41:12,994
St. Jude and ~ they had us all like pretty
much set up like hey we're gonna

682
00:41:12,994 --> 00:41:18,720
do the a bone marrow transplant and we
just have to make sure everything lines
up.

683
00:41:18,720 --> 00:41:24,985
~ but his his hemoglobin kept on holding
and holding and holding and never

684
00:41:25,005 --> 00:41:29,308
it never dropped below the I think he's
still at like nine,

685
00:41:29,308 --> 00:41:33,321
five or something like that, and it's
never his threshold was at the time,

686
00:41:33,321 --> 00:41:35,252
I think like eight and eight.

687
00:41:35,352 --> 00:41:36,612
And it never dropped, never dropped.

688
00:41:36,612 --> 00:41:38,063
And our hematologist was like,

689
00:41:38,063 --> 00:41:40,823
Look, I was like, I if he doesn't drop,

690
00:41:40,823 --> 00:41:46,395
I don't know, don't see why we need to go
through with a transplant if he's holding.

691
00:41:46,395 --> 00:41:49,676
So now it's yeah,

692
00:41:49,676 --> 00:41:53,027
three years later we're we're still he's
still at like nine five with

693
00:41:53,027 --> 00:41:55,918
his hemoglobin. But ~ his

694
00:41:54,788 --> 00:41:55,788
Wow.

695
00:41:55,918 --> 00:42:00,519
his treatment now is monitoring his ~ labs
every three months.

696
00:42:01,466 --> 00:42:02,466
Okay.

697
00:42:02,100 --> 00:42:03,100
So

698
00:42:03,579 --> 00:42:09,505
Amazing. Well, thank you so much for being
willing to come on and share about your

699
00:42:09,505 --> 00:42:11,949
family's experience and what you went
through.

700
00:42:11,949 --> 00:42:16,415
Were there any other questions or stories
that you wanted to talk about

701
00:42:16,415 --> 00:42:17,415
or have me ask you?

702
00:42:17,970 --> 00:42:23,257
I wanted to shout out one of our ~ the
child life specialists that was with us.

703
00:42:26,455 --> 00:42:28,266
her name. I I'm gonna say Elizabeth.

704
00:42:28,266 --> 00:42:29,589
I'm pretty sure name was Elizabeth.

705
00:42:29,589 --> 00:42:34,034
And ~ like I said, we would go in on
Wednesdays for labs

706
00:42:34,034 --> 00:42:38,860
and Fridays for transfusion. And we were
like one of three patients on Fridays.

707
00:42:38,860 --> 00:42:42,545
~ because Fridays was kind of like their
the clinics.

708
00:42:45,031 --> 00:42:47,232
I guess I'm g I'm I'm gonna say paperwork
day,

709
00:42:47,232 --> 00:42:49,624
like just get all the files and you know,

710
00:42:49,624 --> 00:42:53,946
not a lot of not a lot of patients except
for us 'cause it took so long for us.

711
00:42:53,946 --> 00:42:57,268
Like it takes it takes eight hours on a
good day for a blood transfusion.

712
00:42:57,268 --> 00:43:03,912
So ~ we would go and I and she was a she
was a child life volunte

713
00:43:03,912 --> 00:43:07,794
volunteer. So she was still in school for
early childhood development.

714
00:43:07,794 --> 00:43:12,636
And she would stay she would stay with
Henry.

715
00:43:15,227 --> 00:43:17,208
In the room, like she like, she would tell
me to like Ryan.

716
00:43:17,208 --> 00:43:20,371
She's Ryan, go go get some, you know,

717
00:43:20,371 --> 00:43:25,494
some lunch or whatever. And she she would
stay in our room with him for like four,

718
00:43:25,494 --> 00:43:30,938
four to five hours. ~ to the point where
like we would go and we would ask,

719
00:43:30,938 --> 00:43:32,810
like, is it is Elizabeth here?

720
00:43:32,810 --> 00:43:34,411
Like, Henry wants to be with her.

721
00:43:34,411 --> 00:43:39,705
So she was she was amazing. ~ and like and
we went,

722
00:43:39,705 --> 00:43:42,196
it's been, it would be it, it had been a
couple of months or whatever,

723
00:43:42,196 --> 00:43:43,196
and we had gone.

724
00:43:43,805 --> 00:43:47,220
We had gone back and she was just in like
the the little player room

725
00:43:47,220 --> 00:43:48,392
and we walked in and she was there.

726
00:43:48,392 --> 00:43:52,201
She was like, Henry you so she remembers
him and he it was yeah.

727
00:43:52,201 --> 00:43:54,460
So I just wanted to give a shout out to
Child Life.

728
00:43:54,460 --> 00:43:55,460
~

729
00:43:55,345 --> 00:43:58,146
Thank you. I it sounds like you can't
forget a kid like Henry.

730
00:43:58,146 --> 00:43:59,146
So

731
00:43:58,919 --> 00:43:59,919
Mm-hmm.

732
00:44:00,687 --> 00:44:02,138
wonderful. Well, thank you so much,

733
00:44:02,138 --> 00:44:06,350
Ryan. I know we didn't touch on the
insurance part of everything.

734
00:44:06,350 --> 00:44:09,862
Which is would probably be a whole other
podcast,

735
00:44:09,862 --> 00:44:12,323
but is there something you wanted to add
is there something you wanted

736
00:44:12,323 --> 00:44:13,323
to add about that?

737
00:44:16,027 --> 00:44:18,799
No, I think we all know. We all know how
dealing with insurance is.

738
00:44:18,799 --> 00:44:19,799
It's

739
00:44:19,357 --> 00:44:20,357
For those guys.

740
00:44:20,820 --> 00:44:26,154
Yeah, right. They ~ I guess the only thing
is they they didn't they didn't they

741
00:44:26,154 --> 00:44:27,154
didn't like

742
00:44:29,735 --> 00:44:32,566
We tried to I guess we tried to warn them
that hey you're gonna have to

743
00:44:32,566 --> 00:44:36,158
pay for our at home treatment or you have
to pay for hospital stays

744
00:44:36,158 --> 00:44:39,287
and they chose hospital stays for about
four months and they're like,

745
00:44:39,287 --> 00:44:43,931
you know what, we're gonna let's not pay
for eight days

746
00:44:44,051 --> 00:44:46,952
of infusion infusion charges.

747
00:44:47,456 --> 00:44:48,456
Yeah.

748
00:44:48,333 --> 00:44:49,333
Yeah.

749
00:44:50,491 --> 00:44:51,713
Well, thank you so much, Ryan.

750
00:44:51,713 --> 00:44:56,591
If people wanna follow along or learn more
about any of the resources that you've

751
00:44:56,932 --> 00:45:01,780
liked, where where should people follow
you or what are your favorite resources

752
00:45:01,780 --> 00:45:02,780
to share?

753
00:45:03,738 --> 00:45:04,738
The ~

754
00:45:06,973 --> 00:45:09,194
I guess like you follow me, I guess I
don't know.

755
00:45:09,194 --> 00:45:13,664
I have a I have a I have a Facebook page
for the the Win bars for

756
00:45:13,664 --> 00:45:16,257
the it's the victory campaign on

757
00:45:15,655 --> 00:45:16,655
Amazing.

758
00:45:16,257 --> 00:45:19,098
Facebook. ~ and then Instagram's just my
name.

759
00:45:19,098 --> 00:45:24,501
I like I said for the as far as the as far
as the victory campaign I'll I'll

760
00:45:24,501 --> 00:45:28,888
~ I'll mail ~ just send me a message,

761
00:45:28,888 --> 00:45:30,963
I'll make a Win bar, mail it to whoever.

762
00:45:30,963 --> 00:45:34,025
~ yeah, that's about it.

763
00:45:34,860 --> 00:45:36,241
I love it. Well, thank you so much,

764
00:45:36,241 --> 00:45:37,360
Ryan. I appreciate you.

765
00:45:38,151 --> 00:45:39,151
Yeah, thank you so much.

766
00:45:39,378 --> 00:45:42,220
Before you go, if this story taught you
something,

767
00:45:42,220 --> 00:45:46,411
made you feel less alone, or helped you
better understand what families experience

768
00:45:46,411 --> 00:45:50,133
in pediatric healthcare, would you help us
by passing it forward?

769
00:45:50,133 --> 00:45:54,096
Podcasts like this grow because people
share them.

770
00:45:54,096 --> 00:45:57,238
Send an episode to a friend, a neighbor,

771
00:45:57,238 --> 00:46:00,711
another parent, or share it with a
Facebook group or community where

772
00:46:00,711 --> 00:46:02,582
you think someone might need to hear it.

773
00:46:02,713 --> 00:46:05,705
And if you haven't already, follow the
show and leave us a review.

774
00:46:06,045 --> 00:46:09,047
it helps more families find these stories
and learn from the parents

775
00:46:09,047 --> 00:46:10,448
who have walked this path before.

776
00:46:10,569 --> 00:46:13,234
Thank you so much for listening to Inside
the Children's Hospital.

777
00:46:13,234 --> 00:46:14,387
We'll see you next time.