November 5, 2023 • 52 mins
In this podcast, host Taylor and guest Robie share a heartfelt conversation about Glanzmann Thrombasthenia, a rare genetic bleeding disorder. They discuss Robie's journey, struggles, surgeries, and life lessons. The dialogue covers adapting to the disorder, family decisions, and not letting it limit one's life.
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Episode Transcript
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Taylor (00:00):
Welcome back to bruise, not broken life with Glanzmann's
Thrombasthenia, the podcastwhere we explore the world of
Glanzmann's for those of youjoining us for the first time,
Glanzmann's Thrombasthenia is anexceptionally rare autosomal
recessive platelet disordercharacterized by a lack of
glycoprotein 2b3a in platelets.
This leads to significantlyprolonged bleeding times.
(00:20):
It's estimated to affect justone in 1 million individuals.
This podcast is proudlypresented by the Glanzmann's
Research Foundation, and I'myour host, Taylor.
I'm flying solo today as Peterhad some last minute stuff pop
up, but it doesn't mean thatthis episode will be lacking in
entertainment In this episode,we're diving deep into Robbie's
unique journey with Glanzmann'sRobbie is a fantastic guest and
(00:43):
you're definitely in for a treatas we explore his life, his
unique perspective on aging withGT and the power of laughter and
facing adversity.
First off, Robbie, thank youfor, rolling with the punches
today.
I don't think today wentaccording to plan at all for me.
(01:05):
Thank you for becoming our guesttoday.
Robie (01:08):
Well, I'm honored to be here.
It's rolling with the puncheskind GT because that's pretty
much what we do every day.
Taylor (01:14):
You're not wrong at all, nothing really ever goes
according to plan when it comesto GT.
So, for those of our communitywho don't know who you are,
let's start off by getting toknow you, Robbie, just a bit
better.
Go ahead and tell us a littlebit about yourself,
Robie (01:30):
well, I am 42, I live in Kansas City, and I've had GT all
my life, Okay.
I was diagnosed at nine monthsold I have two sons and a wife
and we live in Kansas City.
So the diagnosis was kind ofinteresting because when I was
nine months old, they wereputting a boot on my foot and
(01:50):
the nurse was holding me downand the next day I was black and
blue everywhere.
And so they did all the testsand found out I had GT.
So nine
Taylor (02:01):
months old.
I mean, that's extremely young.
Obviously, you're not reallyaware of what's going on.
You don't remember being ninemonths old.
I can imagine that thatdiagnosis, though, had an
impact, especially consideringnot to call you old or anything,
but, you know, wiser than somebecause you have more experience
(02:23):
on this earth.
It was different treatment planback then, wasn't it?
So what I can only imagine howyour family felt when they heard
that diagnosis.
Robie (02:34):
Yeah what treatment plan?
when I was diagnosed, they toldmy parents that I was the third
person they ever saw with it inSt.
Louis Children's Hospital.
They never saw it when I had hipsurgery.
I'm sure we'll talk about later,but.
In Kansas City, at 37 years old,when I had hip surgery in Kansas
(02:54):
City KU Med told me I was thesecond person that they'd ever
treated, I was surprised atthat, because it's a research
hospital and, you know, it's...
Pretty big.
But to find out that I was theonly the second one they ever
treated with anything was prettyimpressive.
Taylor (03:10):
I know this because I just happen to know you
personally but for those of youwho don't know, our support
group in our community has beenaround for 20 years now.
So I grew up with Stories ofRobbie this kid out in the
Midwest, who was still runningtrack and still playing all
(03:33):
these sports and like, he justwas thumbing his nose at GT and
every precaution that thedoctors were telling him.
everything that I've ever heard,that's kind of your personality.
Robie (03:43):
Yeah, it really was.
I mean, my whole life has beenlike an obstacle course.
It's like one thing afteranother and there's never
anything easy.
So you just roll with thepunches, like we said earlier,
but growing up, it was, theywere always worried.
My grandma was really worried.
I was going to get hit with mylittle brother.
And of course it happened manytimes.
(04:05):
I had, I had 26 surgeriesgrowing up on my nose.
That was, for me, it was normalbecause, oh, I'm going to
hospital again.
I'm going to have anothersurgery.
Cause that's just what happensbecause that was my normal.
Growing up, they wouldn't letme, officially play football or
baseball or any contact sports.
(04:28):
So me being competitive, I waslike, well, what can I do?
What will you allow me to do?
And they're like, well, howabout run?
How about go run cross countryor track or something like that?
And I'm like, well, there's noball in that.
That's not like fun, fun, butyou know what?
I'm going to do it the best Ican because I don't want to
(04:48):
lose.
I'm competitive.
And as I started running and asI started progressing I started
realizing that, you know, I'mreally not this good.
I'm really not good at thissport.
In my freshman year, I wasn'tgood.
I was, JV, I wasn't very good atall.
(05:09):
They had a pickup race.
That was for anybody else thatwanted to come run and support
the people.
So, you know, support your teamand then you get to run too.
Well, that was the turningpoint.
That was where I had to make adecision that race.
I was dead last and I rememberthe last mile or so you go up
(05:32):
this big Hill, you circle aroundand then you come down the Hill
to the finish line I just didn'tknow what was going on.
Cause I was like, man, I'veworked so hard.
I've trained, I've doneeverything I can.
What is it that I can do to getbetter?
And I remember in that racegoing up a hill and just falling
(05:52):
down cause I just couldn't do itanymore.
So I started crawling, crawledto the top.
I got back up and I'm like, Ican keep going.
I can finish the race.
Little further down the road, ahundred, 150 meters.
I fall down again.
And I'm like, man, I'm so close,but no one's out there.
(06:14):
I don't see anybody.
No one's cheering me on that Iknow of that I could see because
it was like out in the middle ofnowhere.
That's what cross country is.
And I get back up and say, I gotto finish.
I just got to finish.
And I get up and I finally getto run it again.
And I come down the hill and Iturned the corner to the finish
(06:35):
line.
My dad is still there cheering.
One of my coaches was stillthere cheering.
They knew I wouldn't quit.
They knew I would finish therace.
And so, they cheered me on and Icrossed the line.
(06:56):
I remember my dad coming up andsaying how proud he was that I
finished and that I ran great.
And I knew, I knew I didn't rungreat.
I knew that he was so proud ofme for overcoming adversities in
my life already and doingeverything I could do to be
better.
And he saw me training.
(07:17):
He saw me doing everything.
He's like, there's somethingwrong.
I don't know what it is, butthere's something wrong.
Like, you work too hard to be,to be where you're at, and it's
like, I mean, it comes to apoint where it's either maybe,
maybe this isn't your sport.
Maybe, maybe we don't do this,but I think we gotta, I think we
(07:37):
gotta get you checked out.
And that was the turning pointbecause little did I know, I
mean, yeah, I knew I was kind ofanemic, but little did I know
that when I went to the hospitalthat they checked my iron level
and my iron level.
Was three, I can't remember whatnormals, what 80 to a hundred
(07:58):
something.
Taylor (07:59):
It's something like that.
Yeah.
Not, not three.
Robie (08:02):
Yeah.
I did have some other things Iknew was going on that I didn't
tell anyone because that's nothow I do it.
I just roll with the punches.
I was passing out.
if I stood up too quick, I'dhave to hold onto something and
I'd blackout You get thefuzzies, like a old black and
white TV, the fuzzies, you feellightheaded.
(08:23):
You're like, Oh my God, I'mgoing to fall out.
And there was multiple times Iwould go in my room open the
door.
fall down on my bed and wakeback up that was the, year I
started changing.
I started taking iron and backthen it wasn't easy.
I was.
15, 14, 15.
I couldn't just go to thehospital and get an iron
infusion or anything.
(08:43):
Or if I could, they didn't tellme back then.
and so they put me on irontablets and I had been, supposed
to be on iron tablets my wholelife.
I never liked them for obviousreasons but I started taking
them.
They told me to take a couple ofweeks off and I'm like, I don't
take weeks off.
I mean, I have to go run.
But so a year later as a junior,I went from running 34, 25.
(09:10):
I went back and I was on varsitythe next year and ran it was
like 17, 1726 or something likethat.
So I cut my time in half andthat's where my running career
really took off by sophomore oftrack season, so, it was just
crazy that my body was sodeprived of iron that as soon as
(09:34):
I started taking it, everythingstarted working.
Taylor (09:37):
Did they have any theories as to how, like, were
you having joint bleeds?
Or, I mean, I know even to thisday, doctors...
Try to say that GT patientsdon't have joint bleeds, but I
mean, were there any bleeds thatwere happening that you could
connect the dot as to why youriron
Robie (09:56):
was so low?
For me, I was just, I just hadnosebleeds all the time and it
was,
Taylor (10:02):
and that's where these surgeries came in.
Robie (10:05):
And I would just constantly have surgeries.
Now when I got older, I startedbeing able to take care of
myself a little better and tryto keep it as moist as possible
and not have as many bleeds, butother things would happen like
Because I wanted to play othersports too, I'd go hang out and
(10:26):
I'd play baseball and playfootball, and me and my brother
would wrestle, and I'd be blackand blue, so I'd get bruises
too, but as we progressed withmy running career, like the
second, you know, we'd Igraduated high school and went
to college, and I came back toFarmington and during that
freshman year of college iswhere I believe I first met your
(10:50):
mom.
And I didn't really meet her,but I like talked to her a
little bit, and she got incontact with me.
My step mom somehow, I don'tknow how they found each other
but then she started telling mestories about Julia and it was
just like, wait a second, thereis someone else out there with
this because I come from a smalltown and there was like no one,
(11:15):
no one knew it.
Go to the hospital like what isit again?
And you have to tell themeverything.
And so we would just go St.
Louis and go to Children's.
But when I first heard, I'mlike, Okay, I went through the
hardest part, I think, of, ofGT, and now there's another
little girl in Georgia that ishaving these issues.
(11:38):
What can I do to help?
Yeah.
Like, I want to help.
What can I do?
Because I want her to have abetter life than I did.
And at the time, all I could dowas run.
And so that's when we startedthe Cheerful Holidays run.
You're gonna
Taylor (11:54):
make, you're gonna make me cry now because I still have
that t shirt, the long sleeve tshirt.
We used to, we were the kids whowould fight over our parents
like t shirts and sweatshirts tosleep in.
And the minute mom got that tshirt from y'all.
It was like the prizedpossession of the three of us
(12:17):
yeah, we, we fought over thatand I not to pat myself on the
back, but I might havepossession of the shirt now.
So, so I'm the ultimate winner,but Dr.
Wilcox has one
Robie (12:29):
Yeah, we sent him one.
That's where we, found out abouthis research too.
And that's why we startedraising money and just send it
in.
I don't remember how much weactually raised.
It wasn't a whole lot, but itwas something.
We did it three straight years.
And I had a good friend help meput it on.
His name was Brad Coker.
And he did all the backgroundstuff and the behind the scenes
things and made it happen and Ijust Basically showed up and
(12:52):
raced and invited people and itwas a lot of fun.
Taylor (12:56):
I do remember that either it was advice from your
step mom, but you were yourstory was the 1st 1 where.
Cauterization was a no go fornosebleeds because it was
something that kept beingbrought up for Julia because she
had just as many nosebleeds asyou did when she was younger,
(13:20):
and there were some that theyjust couldn't get to stop, and
they wanted to cauterize everysingle time, and I just remember
Thank When my parents pushedback the, the response they got
from the doctors was, we don'tknow that will happen.
And my mom, I just rememberbeing like, no, no, I know
(13:42):
somebody personally where thishas happened.
And we're not we're not riskingthat.
So when you go in and youcauterize, you're fixing the
problem now.
But if you're having 26 of themdone, what, I mean, what's the
potential.
Negatives
Robie (14:02):
they did that a little bit and then they quickly
realized maybe we shouldn't dothis.
And they constantly packed mynose a lot and over time I
developed a little hole in theseptum they were like, well,
what can we do, do we just letit go?
Or find a way to put somethingin there to like, you know, keep
(14:22):
the nostrils separate.
And so they decided to come upwith what they called a button.
And all my life, it was, Hey,let's put this in.
And when I put it in, it'sbasically a little started
little cause my nose was little.
And then as I grew the hole willget bigger.
Well, they used to stitch thebutton to the septum and they
(14:43):
found out That was killing theseptum and it would deteriorate
the septum and the hole wouldget bigger So then they started
stitching the button to itselfand it would stay in there
better.
The only problem was if my nosewas dry and I get hit on it It
would scratch the inside of mynose, next thing you know back
(15:04):
to hospital, back to surgerybecause blood clots would get
between them and it would justpush the button out of place.
I remember one time I had asurgery on a Monday, cause
surgery days were Mondays andWednesdays.
I still remember them.
And I'd have them on a Mondayand this one particular time was
the only time I really remembergetting platelets as a little
(15:25):
kid.
And this time they ran it long.
And so it stuck out my nose andyou can, tell right here, I get
little creases here that wasfrom that time when the button
stuck out like a half an inchand it was out for like a week
like that to see if it was goingto shift again.
(15:46):
the next week I came back and.
The bleeding had stopped andeverything and they had cut, It
back to where it tucked back inmy nose and I was good to go for
a while until I got hit orwhatever the next time.
But it was like, you never knewwhen I went there.
What they were going to do,like, they tried so many things
(16:06):
back then they did the wholecocaine thing.
They tried that on me.
All I know is it didn't help me.
And my parents told me that Iwas.
A crazy man.
Like, I don't know whathappened, but they said, all I
wanted to do is run down thehallways.
I want to get on the elevator,ride the elevator up and down.
(16:28):
I jump up and down, jump up anddown.
I was just like going nonstopthroughout the hospital.
Taylor (16:34):
Who had to deal with you jacked up on liquid cocaine.
Robie (16:38):
Yeah.
they were great.
Julie always took care of me.
it was like my little minivacation.
I just show up and I knew, Hey.
This is what's going to happenthis day.
I get to go down to theplayroom.
paint porcelain things.
I get to play video games on theold school computers.
St.
Louis Cardinals Fred Bird wouldcome whenever once in a while.
(17:01):
WWF was in town one weekendwhile I was there.
And I got.
Two autographed pictures Ibasically lived in that hospital
for 18 years,
Taylor (17:12):
One of the things that I think is a trigger word,
especially for those of uswho've been in the community for
such a long time, is whensomebody is like, I just want my
child to feel normal.
Obviously, that's.
That's our trigger word, and Ithink it's because ultimately
nobody's really normal, like,everybody has stuff going on but
(17:34):
just because you have GT doesn'tmean that you've never let it
hold you back, and I'm notsaying that other people do, but
I'm saying that you are probablyone of the best examples of just
giving a big ol middle finger toGT your entire life, and being
(17:57):
like, You know what?
I'll deal with the consequenceslater.
I absolutely love that about youand we have there's a couple of
people in the community who I.
I always call them my redheaded,like the redheaded stepchildren
of the group, because y'all arethe wild kids.
You like the doctors will tellyou and you're like, okay, cool.
(18:18):
So do you know how to fix it ifI mess it up?
Because as you get older, Imean, does it get easier?
Or do you just learn how to dealwith it
Robie (18:29):
better?
Well, I'm still learning it'salways been improvise and
overcome.
you can't let anything defeatyou or you'll live in a bubble.
And living in a bubble is nolife at all.
Life, you gotta have fun.
You can't just sit back andwatch everyone else have fun
because that's not healthyeither.
(18:49):
So, that's why I decided to takethe bull by the horns and, be
smart about things.
Taylor (18:56):
air quotes for everybody who can't see him.
Robie (19:01):
It doesn't always happen because it's like, you know what
I know I shouldn't do this, butI really want to, and I'm going
to, I'm going to try it.
I'll just try it just a littlebit.
And just see, right?
Just, just a little bit.
We'll just see if it's okay.
Taylor (19:18):
What's the worst that
Robie (19:19):
could happen?
First time it doesn't, it wasnot bad.
Second time, like, oh crap, Iprobably shouldn't be doing
this.
Since I've grown older, I don'trun anymore.
Like run, run.
I graduated college, you know, Ipaid for my college.
I was very successful.
I feel especially overcoming GT.
(19:42):
it did hinder me running becauseof the lack of iron or the
roller coaster of my hemoglobin.
If my hemoglobin numbers weregood, then I was a very tough
runner.
But they weren't, then I wouldjust fall back to, second, third
place on the team or whatever.
(20:02):
one bad nosebleed and crosscountry season was in the winter
time.
So it was drier.
So I did bleed more in thewinter time.
And once it turned cold, thenthat's usually when I had my
first nosebleed, like tough oneof the college career.
And it's like, okay, how long isit going to be until I'm normal?
I got so many weeks until I'mready to go.
(20:26):
But I would get back and I wouldgo out there and give it all I
had.
Another thing that happened, Iwas training.
I never had rolled my ankle mywhole career, ever.
Like I'd roll it, but it wasn'tbad.
This time, it was bad.
I did it on a Thursday.
Warming up for a workout.
(20:48):
Rolled it, and I'm like, I godown, and I'm like, What just
happened?
I couldn't believe it.
I looked at my ankle.
My ankle was like the size of abasketball.
It was huge.
Okay.
Maybe not that big, but it washuge.
Taylor (21:01):
can imagine though, that it was
Robie (21:03):
pretty big, big.
I couldn't, I couldn't walk.
I was like, what's going onhere?
This is not good.
They go get the coach, they getthe cart, they wheel me in.
They're like, man, this is notgood at all.
You're, you're not going to beable to go.
Cause we were leaving, that wason a Thursday.
We were leaving Friday to go tothis race in South Dakota.
(21:25):
And I'm like, Coach, I have torun tomorrow because we just
fallen out of the rankings.
And he's like, dude, you'regoing to stay about, you can't
go.
And I'm like, what'd you say?
Did you say can't?
And so I went down there Fridaymorning.
I showed up Friday morning.
He's like, what are you doing?
I'm like, coach, we just fellout of the rankings.
(21:46):
I have to go run.
And he's like, you can barelywalk.
You can't run a five mile race.
I'm like, yes, I can.
He's like, okay, you're going tohave to go down the trainer.
You're going to, if they tapeyou up, you're going to have to
prove to me that you can runwithout a noticeable limp.
I'm like a noticeable limp.
So we go down, they taped me upand the whole time the trainer,
(22:09):
he's just like, are you serious?
You're, you're going to try torun with this.
So I go and we race and we beat,I don't know, I can't remember
the place that we got, we gotthird or fourth, I just remember
crossing the finish line and Iwas in so much pain and I just
crossed the finish line and Ijust went down and tell my
(22:31):
teammates came and picked me up.
Took me out of the, out of theway.
And just like, dude, I don'tunderstand how you just did
that, but that was a heck of arace.
Taylor (22:40):
your parents say?
When you told them about thatbecause this is that college,
Robie (22:46):
right?
This is a college.
Yeah, they were I mean, itdidn't shock them They were
like, yeah Yeah, that soundslike something you do Are you
okay?
Yeah, okay.
Yeah.
Well good race so
Taylor (23:03):
How long was the recovery
Robie (23:04):
on that?
It was, a noticeable coupleweeks.
I still, I mean, I didn't notrun.
I kept running.
Just loosened it up, you know.
I did take it easy, but itwasn't like, hey, I'm not gonna
run today.
It was ice bathing it all thetime and I remember going down
there two or three times a dayjust to get it better.
(23:28):
Since then, I, you know, I stillplay stuff I'm not supposed to.
I still play softball.
I got, I got a hopefully achampionship to win tonight,
but...
We'll see about that leaguechampionships.
But no, it's, I mean, I've hadnumerous injuries on the ball
field.
Taylor (23:44):
I was going to say since, I mean, just in the past
couple of years, being yourfriend on Facebook stresses me
out because when it's softballseason.
I think at least once every twoweeks, there's a new injury that
you're like, well, did thistoday.
Robie (24:00):
So I've always loved baseball growing up and I was
never allowed to play it.
So as soon as I graduatedcollege.
And I got married, I'm like canI go play softball?
So we had a little church teamand that's what got me started
in softball.
And then it kind of took over mylife for a little bit where I
was playing two or three nightsa week and then playing all
(24:21):
weekend a couple weekends amonth.
That's
Taylor (24:25):
just out of the blue, you becoming so passionate about
sport.
Robie (24:29):
It was been quite a few injuries with it.
I started out in the outfieldand I broke a rib diving and
jumping over a fence I broke mywrist diving after a ball in the
middle of February.
as I got older, I startedtearing hamstrings and calf
muscles.
the real injuries startedhappening.
one day in December I was out ata tournament and took a swing
(24:53):
tried to run out of the box andI kind of stumbled I didn't fall
down, but I knew somethinghappened.
I thought it was my back, wentto chiropractor for a while.
Insurance denied me multipletimes for an MRI I went through
physical therapy.
The chiropractor tried to get anMRI.
They denied it.
I went through six weeks came inone day on crutches and my
(25:15):
physical therapist was like,dude, I don't know, but I can't
walk.
And for me to say, I can't walk.
It's bad.
He's like, oh, this isn't goodthen.
There's something major wrong.
I'm not touching you until wefigure out what's wrong.
Yeah.
Yeah.
He got denied for an MRI too.
And then, they sent me to a backspecialist, they denied them,
(25:37):
finally, they pushed through,the MRI of my back, they're
like, oh, well the good news is,your back looks great.
The bad news is, we need asecond MRI, because we think
it's your hip.
I was 37 at this time.
Still playing ball.
Still doing all that.
It was April.
I played a tournament.
came home.
(25:58):
and then drove to St.
Louis for Easter.
Got to St.
Louis, got out of the car Ican't walk again.
Taylor (26:05):
pair of crutches, of course.
Robie (26:08):
Got to, got to.
And so I had them, took themthere My wife was kind of mad at
me for showing up so late onEaster.
And then I woke up the nextmorning.
I'm like, honey, I can't move.
She's like, well, you playedball all day yesterday.
I'm sure you can walk enough to,go to church with us and all
that stuff.
And I'm like, I'm really trying,but I really can't, but I can't.
(26:30):
And little did we know that Ihad a broken hip.
Taylor (26:34):
So it was broken the entire time.
Robie (26:37):
Yes.
So I had a BN, a vascular neurocirrhosis where I lost blood
flow to my joint, my bone, thebone started dying.
So it had probably already died.
And then in December itfractured by the time we got the
MRI in April, it had alreadycollapsed.
So my bone wasn't round anymore.
(26:59):
It was like a half moon and thetop had just collapsed on top of
each other.
And it was very painful, butself employed, improvised,
overcome, hip, working, playingwhen I could.
We had just started this newteam and I had to do what I had
(27:19):
to do.
And so little I know, thatOctober 2018, I had my first
surgery.
Taylor (27:27):
Well, it was a hip replacement, right?
Robie (27:29):
It was a full hip replacement at 37.
First time they were reallycutting on me, I guess you could
say.
All my other surgeries, no one,they never really cut on me.
And this was a very stressful,nervous time.
we had two boys, so.
For me, it was like, I'm goingto be all right, right?
(27:50):
Yeah, I'm going to be all right.
I can do this.
And in the back of my head, backof my mind, they're always
thinking, I hope I'm going to beall right because I have a wife
and two boys that depend on me.
And I just have to be okay.
my oldest one was, in thirdgrade.
(28:12):
So he was probably eight.
And so we do consults, make aplan, talk to hematologists, and
wound up using platelets.
I'm one of those that have neverhad milo 7.
It's always been platelets andblood and iron infusions I had
(28:32):
one unit of platelets beforesurgery.
And I told the surgeon, I bleed.
I'm really good at bleeding.
So, be ready.
He's like, oh, we'll be fine.
in and out 45 minutes to anhour.
no big issues.
So we had the first unit, I hadchecked I was doing good.
it was like 14 before thesurgery.
Taylor (28:54):
Which, by the way, those are like pro numbers for
hemoglobin, guys, like GT14,I'm, I'm impressed.
Robie (29:02):
I was like feeling good and the crazy thing, like two
weeks earlier, I was like at 15,9, I'm like, man, I'm feeling
great.
Oh yeah.
You were
Taylor (29:09):
like, heck yes, let's have this
Robie (29:10):
surgery.
Right.
And so something happened forlike two weeks before surgery
that I don't know what, but Iwent from like 15, 9 to like 14,
2 and I'm like, just another dayin the walk in the park kind of
thing.
Yeah, well after that we dosurgery and my surgery was
supposed to be like eighto'clock in the morning or
something like that Well, thenext thing, you know, it's like,
oh we're going at noon.
(29:33):
Well, I saw I'd go back in theback and Everyone's telling the
waiting room and it's no longernoon It's two o'clock and then
it's three o'clock and I'm likewhy?
like people are going in peopleare going out everyone's having
surgeries, but Not Robbie, he'sjust sitting there waiting.
And my only thinking is, okay,they're scared of what's going
(29:55):
to happen.
So, and little did I know thatI'm guessing that had to be the
plan.
Taylor (30:03):
Yeah.
Somebody was like, are you surethat you can get this done in an
hour?
Robie (30:07):
And so I just sat back there, prepped and waiting, had
my platelets and then Going tosurgery at like three o'clock or
something like that.
Well, six hours later, I showedup in my room.
I was in surgery for like threehours or four hours.
I was in recovery for like twohours and I went from a
hemoglobin of 14 ish to loweights and I was still dropping.
(30:31):
So if I dropped all the way downto seven.
Which I was still like, seven'snot bad.
I'm alright, I can do this.
But I was getting pretty, like,lethargic because I hadn't been
that low in a long time.
And I was older.
I was 37.
So, that was not the best thingfor me.
But I was in the funny thing waslike, oh, it's a hip surgery
(30:54):
now.
And back then it was like, hey,you coming on Monday?
Have the surgery.
You stay Tuesday.
You go home Wednesday.
You'll be, you'll be getting outin three days.
I'm like, wow, that's prettyimpressive now.
It's Hey, you come in and havesurgery.
You're out like outpatient.
Yeah.
Right.
Yeah.
So I went in on a Monday, hadsurgery.
I was there Tuesday, Wednesday,Thursday, Friday, Saturday,
(31:18):
Sunday, and Monday.
And I got the whole Monday.
So I was basically there eightdays.
It was really a rollercoaster ofthe, of the hemoglobin and
watching my blood go down andthen stop and then start to
slowly creep back up.
I think when they let me, theylet me go I had three units of
platelets and they had ironinfusions for five straight days
(31:44):
to try to get me pepped up, Iguess.
Taylor (31:47):
what happened?
Was it just...
You bled so much during surgery,or did, did you have a bleed
that didn't heal after thesurgery?
Robie (32:00):
So that I'm not really sure on.
Okay.
I didn't, I think, this is allyou making this up in my mind.
Yeah.
Because I don't know really, butI think I bled a lot.
Yeah.
In surgery.
And I know the surgeon, well, Iknow the surgery had to have had
some, like, conflicts because ittook so long.
(32:24):
So I don't know really thedetails of what was in there.
I mean, they never really toldme anything that happened.
But I was in there way too long.
I bled way too much and they gotme stitched back up.
They gave me Amicar, I believe,out after surgery.
I had a unit of platelets after,and then the iron infusions.
(32:47):
But that got me, that took along time to recover from.
I have something to compare itwith now because I've had the
other hip done and it was nightand day.
Yeah.
From the surgeon to hospital,other than the second hospital
trying to give me bloodthinners.
(33:08):
I think I called you that day,too.
You
Taylor (33:09):
were like,
Robie (33:10):
Hold on.
My hematologist.
They're trying to give me, notmy hematologist, this hospital's
trying to give me bloodthinners.
I'm telling them, do not give meblood thinners.
Like, no, everyone has them.
I'm like, I'm not everyone.
And they're like, well, ourhematologists, they've seen lots
of GCP patients.
I'm like, you have no
Taylor (33:27):
idea.
Don't trust you.
Don't trust you immediately.
Yeah,
Robie (33:30):
the second, the second hip surgery was phenomenal.
And this is the one I had to,you know, I was in great doctor.
He was like, I've done, I wasthe first one in Kansas city to
be doing these.
I gotcha.
We'll be fine.
Walked in, felt comfortable.
This time they gave me two unitsof platelets before.
(33:51):
And then, I had needed nothingelse.
Like, he was in and out.
Forty two minutes, I think iswhat he told me.
And, he was done.
And, it was just, That hip, theleft hip feels way better than
the right.
Still, even though it's new.
The right one took so long forme to recover because I lost so
(34:14):
much blood.
Yeah.
Second one, I was like, man, Ithink I can play ball today.
Taylor (34:19):
I actually think I remember you making a joke like
that, like, within days of youbeing home from surgery.
But I can assume that theanxiety probably quadrupled
before the second hip surgeryjust because of how bad the
(34:40):
first one I went, notnecessarily bad, but
unexpectedly, the first one wentright.
Robie (34:45):
I was, I was definitely more nervous the second time.
I was five years older, I guessI was 44 years, four years
older.
So, yeah, so I was definitely alittle more nervous.
The kids were old enough tounderstand kids were older, they
understand.
Now, my old, my, my firstsurgery, my oldest one, he was
(35:07):
kind of old enough tounderstand.
Mm-Hmm.
And he was like, he was soscared.
He thought, he thought I wasgonna die.
He really did.
Yeah.
He came to the hospital, hecurled up in my bed, didn't
wanna leave.
He was just so worried because Iwas in there for eight days.
The second one.
I was more worried than anyoneelse because it's like, okay, I
(35:28):
survived this once, you know, Ithink I'm pretty tough, but, you
know, I just don't know whattomorrow has anymore because you
just don't know.
And I was nervous.
I tried to play it off as itwasn't because that's what I do.
Taylor (35:45):
Yeah, I got this.
No big deal.
Improvise
Robie (35:48):
and overcome.
So.
But I knew I was in good handswith the surgeon and I just
trusted him and trusted the themedical team and They came
through I was in and out ofsurgery and you know A couple
hours was from the time itstarted the time it ended the
(36:09):
surgery itself was only 45minutes 42 I think is what he
said and I was stitched up,minimal bleeding he said it was
one of the smoothest ones he'sdone.
And it just went, everythinglined up, perfect the platelets
did their job, and the speed ofthe physician definitely helped
(36:30):
the second time.
And so, in the hospital forthree days, almost like a normal
person.
Taylor (36:38):
Almost.
Almost.
You didn't get blood thinner, soyou're not quite normal.
Robie (36:44):
So the only reason, really, they held me for the
three days was because, wewanted to make sure.
They were checking my levels andwe're just gonna hold you just
in case you have anypost-surgery, bleeding, and we
don't wanna send you homeprematurely.
But I was great.
I was up and I mean, I waswalking, but, you know, I wasn't
(37:06):
like running.
I had to have a walker and allthat fun stuff, So that's kind
of that adventure.
And since then been pretty goodon not hurting myself.
Other than, you know, thetypical take a hundred mile an
hour softball to the chin
Taylor (37:21):
I was about to say, yeah, such malarkey because you
have been injured since then,just not, those are, nothing.
Well, so how old were the boyswhen you first, like, was it
something that y'all always talkto them about like, Hey, dad has
(37:41):
this.
Thing, like, as of right now,with my boys, they're seven and
five, they just know Aunt Juliahas a bleeding disorder, and it
means we just have to be carefularound her is that kind of the
approach that y'all did or didyou, you know, wait until they
were a certain age before reallytalking about it?
Robie (38:03):
I don't remember like really sitting down and talking
to them about it other than.
Before the surgery and we talkedto my oldest one and told him
everything.
He, I mean, he knew I likebruised all the time and all
that, but he was still not oldenough to really understand all
(38:23):
of it.
And still now, I mean, he'll askquestions and I'll, I'll tell
him and we wrestle.
It's fun for now, but he'sgetting big.
I was about
Taylor (38:33):
to say, he's a
Robie (38:36):
teenager now, he's 13 and he's, he's very athletic and
he's pretty strong.
So it's kind of, I got my, mydays are numbered for before I
can't wrestle him anymore, but Istill gotta let him know who dad
is.
So yeah.
Yeah.
My youngest one.
He's, he is like the life of theparty.
(38:58):
So he is not, I mean, he'sathletic and stuff too, but he's
just not, he is not mycompetitive clone, if that makes
sense.
Right.
My oldest one, he is me, he isme without GT Oh my gosh.
So my, oh, it's gonna fun towatch him and Yeah.
High school and college andwhatever he chooses to do.
(39:21):
But yeah, it's, it's crazy whenyou have kids like.
You see your personality inthem, you know what they're
going to do before you do itbecause that's what you would
have done and it's just, it'sjust interesting.
Yeah, so that's kind of cool.
Taylor (39:39):
Well, so I feel like with guys, it's different than
with girls, right?
Like with guys, with GT, havingkids is always still on the
table.
Whereas with like girls, it'snot necessarily, some can, some
can't, right?
But no matter what, it's.
(39:59):
It will end up being intense.
Did you and Ali before havingkids, did you do any type of
genetic counseling or anything?
Was it one of those, this is sorare, we're not really that
concerned about it or, you know,well, you're smiling.
Robie (40:21):
We had, we've had two babies that are miracles.
They really are.
When we tried to have Tucker, wecouldn't get pregnant.
We couldn't get pregnant.
And then we got pregnant throughhaving help and we had a, we
lost our first one.
(40:42):
We tried again.
We lost, miscarried the secondone and then finally we got
Tucker and we at that time wewere like, we hope he's, we hope
he's normal, but even if heisn't, like who else better to.
To have him than me, like, Ican, I can take care of them.
(41:05):
I can do it.
And I just, we just wanted, wewanted a kid so bad that it's
like, you know what?
If it happens, then we'll.
We'll deal with it, then we'llroll with the punches, we'll
we'll do it but we did have himtested after he was born to see,
(41:25):
and he had, obviously he's acarrier, but he doesn't, he got
the good gene from his mama, soand the same with my youngest,
we never had him tested, buthe's 10 now, and, and never
Taylor (41:40):
shown any symptoms,
Robie (41:41):
yeah, it was very hard for me because all I can give
them is GT.
That's all I have.
And I just wanted to have achild that could play sports,
that could do whatever he wantedto do.
And it happened, but it was soscary.
(42:03):
Going through that time becausewe didn't have, her tested to
see if she was a carrier oranything.
we just did it and he came anddidn't find out if he was a boy
or a girl.
We had names picked out and wejust enjoyed the time when he
came out, we're like, man, lookslike a Tucker to me.
And we named him right there andthe rest is history.
(42:27):
But yeah, it was crazy times.
from a guy's perspective, alwaysin the back of your head, Hey,
what if, cause we know, I mean,it's all like, Hey, I have a
good gene and a bad gene.
No, I have both of them.
They're both bad.
They're both terrible.
So.
The best I could give them is,is not good.
So, we knew the risk going inand we decided, you know, we're
(42:53):
gonna roll the dice and go withit because that's just what we
wanted.
Taylor (43:00):
Well, and like you said, even if one of the boys had had
GT, Who better to parent himthan somebody who, who has grown
up with it and who knows how tomanage it on themselves.
So, and I like that perspectiveon it a lot, because it's, if
(43:22):
you think about it in a way oflike, if your parents didn't
have GT, right, they had nopreparation whatsoever.
And, but you have some, so Ilike that perspective a lot, and
I think that that will sink inwith a lot of.
(43:43):
dealing with GT because I thinkmen are very hard on themselves
when it comes to taking care oftheir family and, and having
kids and stuff where not thatwomen don't, but you shoulder a
lot of the responsibility ifsomething doesn't go right, but
(44:05):
then you internalize that.
Even us just talking about thisnow just shows that, I mean, it
is okay.
Like it's, it's okay for certainthings not to end up okay.
And then when they do end up,okay.
Like, oh my gosh, like how muchmore amazing is that?
So yeah, I I'm just so proud ofyou.
(44:30):
Like I'm not trying to be cheesyor anything, but I am, I'm just
so proud of you because it's,it's not easy having GT.
It's not easy.
I mean, it's not easy being asAnd I don't want anybody who
listens to this think thatyou're selfish or anything like
that, because this, yourcompetitiveness, your, your
(44:53):
wanting to go out there and playsports and everything, you can't
help that.
Like, that is part of who youare.
And if you were to even try tolock it away, I mean, I, I don't
want to imagine how, yeah, like.
(45:14):
Yeah.
Like, so you made it work foryou.
Robie (45:19):
like with Cross country, back then, it was like, that was
my way to escape reality.
Like I could go out and I couldgo for a run and I could go push
my body to the limits and Icould forget about home life.
I could forget about everythingelse that was going on that
might not have been so good.
(45:40):
And.
It was just me in the pavementand it was just me out there
doing me and nothing could stopme, but me.
And that's, I mean, that's thesame thing I had.
I gained so much of myconfidence as a person through
(46:00):
sports and being able to, eventhough when I was failing,
failing at sports, it was like,I'm still gaining confidence
because I know I'm putting thework in and one day I will see
the results.
And that goes for any of us andanything we do, like, you can't
(46:22):
quit, you can't just stop doingthings because it's not working.
If you truly want to dosomething, if you truly love
something, you have to work hardfor it.
That's marriages, that's jobs,that's athletics.
If you truly love it, you haveto work hard for it.
(46:42):
And don't let anyone get in yourway of telling you that you
can't do it.
You control you and one day, youknow, I'm going to look back and
be like, you know what, I justcan't play ball anymore.
I can't do it physically.
And that's when I'll have tostep away.
(47:04):
And, but luckily right now it'slike, I'm getting there.
I'm close to like, I'm justgonna sit back and watch my kids
now.
And cause it's so much funwatching those boys go out there
and just play ball and they bothplay soccer.
Well, this one runs crosscountry.
Taylor (47:24):
they're super smart kids, they play soccer.
Absolutely.
Only the best sport in theworld.
Well, we also know though, like,the day that you have to, like,
step away from from softball, Ihonestly see you just, like,
redirecting that focus.
(47:44):
Into something that doesn'trequire you to move around too
much.
So like in five years, I, Ifully expect that like Robbie is
the.
The Midwest champion of cornholeor something like you know,
just, or of pinging pong like,yeah, I, cause first never I was
(48:07):
running, then it was softballand I don't see you stopping.
No,
Robie (48:13):
we shall see.
Am I just, am I just sit backand enjoy being a dad and
watching the boys play for awhile, and then maybe when I'm
50, I'll make a comeback.
Taylor (48:25):
Come out of retirement.
Well, so we always ask thisquestion in every single
episode.
It's kind of become a tradition.
If you were to talk to youryounger self today.
What would you tell him aboutwhat the future looks like?
Hmm.
Robie (48:45):
Well, it's bright.
It's always bright.
So, I would always, like, as ayoung, as an old GT patient to a
younger one, I would say, I canlook back on my life now and
know, you know, had I done A, B,and C, my life would probably
(49:05):
have been a little better.
Had I taken a little bit big,better care of myself as a
younger person With GT because Iwas a little rebel.
I guess you could say Now I'mnot saying don't do everything I
did, but I'm saying hey takecare of your nose a little
better.
You know all that stuff and Withtechnology now it it's a lot
(49:30):
easier to you to to make sureiron levels are up to make sure
your blood counts look good andBy doing those kinds of things
Athletically I would have beenThat'd been a better route back
then.
So if you look in the future,you know, whatever, but in
general, everything else though,is, you know, keep having fun,
(49:55):
keep living like you want tolive, not that you are in a
bubble, like don't ever stopbelieving that you can do
something that people tell youcan't just Just keep trying and,
and, and put the work in and theresults will happen.
And that applies to everythingin life, relationships, sports
(50:19):
put the work in and the resultswill come.
Taylor (50:22):
So in closing, I do want to extend another massive thank
you to you.
You were, you didn't know what apodcast really was before this.
I
Robie (50:35):
mean, I heard about them before, but.
Taylor (50:38):
I mean, you know, it showed your age
Robie (50:40):
a little bit.
I did try to, like, listen to ita couple of years earlier today.
Like, I was, like, two thirty.
I'm like, I gotta, I gottafigure this out real quick.
And I listened to a little bitof the one from the, from
Boston.
I'm like, okay, I think I
Taylor (50:54):
got the hang of this.
Yeah, it's not, it's nothing tooscary.
And you did good, kid.
good.
Robie (51:02):
I guess you can't teach an old dog new tricks.
Taylor (51:05):
For everybody, I do encourage you to visit our
website at www dot QRGT dot org.
You can also connect with us onFacebook, you can reach out to
us via our Cure GT website, andwe're also extremely proud of
our amazing support group onFacebook, which now we have
around 830 members.
(51:26):
It is an absolute testament tothe incredible strength and
solidarity of our community whohappen to be scattered
throughout the entire world.
Everyone in this group iswelcoming and understanding, and
they make it just an incrediblesafe space.
And also, as I always say at thevery end, remember, while you
(51:46):
might be one in a million,you're definitely not alone.
Welcome back to bruise, not broken life with Glanzmann's
Thrombasthenia, the podcastwhere we explore the world of
Glanzmann's for those of youjoining us for the first time,
Glanzmann's Thrombasthenia is anexceptionally rare autosomal
recessive platelet disordercharacterized by a lack of
glycoprotein 2b3a in platelets.
This leads to significantlyprolonged bleeding times.
(00:20):
It's estimated to affect justone in 1 million individuals.
This podcast is proudlypresented by the Glanzmann's
Research Foundation, and I'myour host, Taylor.
I'm flying solo today as Peterhad some last minute stuff pop
up, but it doesn't mean thatthis episode will be lacking in
entertainment In this episode,we're diving deep into Robbie's
unique journey with Glanzmann'sRobbie is a fantastic guest and
(00:43):
you're definitely in for a treatas we explore his life, his
unique perspective on aging withGT and the power of laughter and
facing adversity.
First off, Robbie, thank youfor, rolling with the punches
today.
I don't think today wentaccording to plan at all for me.
(01:05):
Thank you for becoming our guesttoday.
Robie (01:08):
Well, I'm honored to be here.
It's rolling with the puncheskind GT because that's pretty
much what we do every day.
Taylor (01:14):
You're not wrong at all, nothing really ever goes
according to plan when it comesto GT.
So, for those of our communitywho don't know who you are,
let's start off by getting toknow you, Robbie, just a bit
better.
Go ahead and tell us a littlebit about yourself,
Robie (01:30):
well, I am 42, I live in Kansas City, and I've had GT all
my life, Okay.
I was diagnosed at nine monthsold I have two sons and a wife
and we live in Kansas City.
So the diagnosis was kind ofinteresting because when I was
nine months old, they wereputting a boot on my foot and
(01:50):
the nurse was holding me downand the next day I was black and
blue everywhere.
And so they did all the testsand found out I had GT.
So nine
Taylor (02:01):
months old.
I mean, that's extremely young.
Obviously, you're not reallyaware of what's going on.
You don't remember being ninemonths old.
I can imagine that thatdiagnosis, though, had an
impact, especially consideringnot to call you old or anything,
but, you know, wiser than somebecause you have more experience
(02:23):
on this earth.
It was different treatment planback then, wasn't it?
So what I can only imagine howyour family felt when they heard
that diagnosis.
Robie (02:34):
Yeah what treatment plan?
when I was diagnosed, they toldmy parents that I was the third
person they ever saw with it inSt.
Louis Children's Hospital.
They never saw it when I had hipsurgery.
I'm sure we'll talk about later,but.
In Kansas City, at 37 years old,when I had hip surgery in Kansas
(02:54):
City KU Med told me I was thesecond person that they'd ever
treated, I was surprised atthat, because it's a research
hospital and, you know, it's...
Pretty big.
But to find out that I was theonly the second one they ever
treated with anything was prettyimpressive.
Taylor (03:10):
I know this because I just happen to know you
personally but for those of youwho don't know, our support
group in our community has beenaround for 20 years now.
So I grew up with Stories ofRobbie this kid out in the
Midwest, who was still runningtrack and still playing all
(03:33):
these sports and like, he justwas thumbing his nose at GT and
every precaution that thedoctors were telling him.
everything that I've ever heard,that's kind of your personality.
Robie (03:43):
Yeah, it really was.
I mean, my whole life has beenlike an obstacle course.
It's like one thing afteranother and there's never
anything easy.
So you just roll with thepunches, like we said earlier,
but growing up, it was, theywere always worried.
My grandma was really worried.
I was going to get hit with mylittle brother.
And of course it happened manytimes.
(04:05):
I had, I had 26 surgeriesgrowing up on my nose.
That was, for me, it was normalbecause, oh, I'm going to
hospital again.
I'm going to have anothersurgery.
Cause that's just what happensbecause that was my normal.
Growing up, they wouldn't letme, officially play football or
baseball or any contact sports.
(04:28):
So me being competitive, I waslike, well, what can I do?
What will you allow me to do?
And they're like, well, howabout run?
How about go run cross countryor track or something like that?
And I'm like, well, there's noball in that.
That's not like fun, fun, butyou know what?
I'm going to do it the best Ican because I don't want to
(04:48):
lose.
I'm competitive.
And as I started running and asI started progressing I started
realizing that, you know, I'mreally not this good.
I'm really not good at thissport.
In my freshman year, I wasn'tgood.
I was, JV, I wasn't very good atall.
(05:09):
They had a pickup race.
That was for anybody else thatwanted to come run and support
the people.
So, you know, support your teamand then you get to run too.
Well, that was the turningpoint.
That was where I had to make adecision that race.
I was dead last and I rememberthe last mile or so you go up
(05:32):
this big Hill, you circle aroundand then you come down the Hill
to the finish line I just didn'tknow what was going on.
Cause I was like, man, I'veworked so hard.
I've trained, I've doneeverything I can.
What is it that I can do to getbetter?
And I remember in that racegoing up a hill and just falling
(05:52):
down cause I just couldn't do itanymore.
So I started crawling, crawledto the top.
I got back up and I'm like, Ican keep going.
I can finish the race.
Little further down the road, ahundred, 150 meters.
I fall down again.
And I'm like, man, I'm so close,but no one's out there.
(06:14):
I don't see anybody.
No one's cheering me on that Iknow of that I could see because
it was like out in the middle ofnowhere.
That's what cross country is.
And I get back up and say, I gotto finish.
I just got to finish.
And I get up and I finally getto run it again.
And I come down the hill and Iturned the corner to the finish
(06:35):
line.
My dad is still there cheering.
One of my coaches was stillthere cheering.
They knew I wouldn't quit.
They knew I would finish therace.
And so, they cheered me on and Icrossed the line.
(06:56):
I remember my dad coming up andsaying how proud he was that I
finished and that I ran great.
And I knew, I knew I didn't rungreat.
I knew that he was so proud ofme for overcoming adversities in
my life already and doingeverything I could do to be
better.
And he saw me training.
(07:17):
He saw me doing everything.
He's like, there's somethingwrong.
I don't know what it is, butthere's something wrong.
Like, you work too hard to be,to be where you're at, and it's
like, I mean, it comes to apoint where it's either maybe,
maybe this isn't your sport.
Maybe, maybe we don't do this,but I think we gotta, I think we
(07:37):
gotta get you checked out.
And that was the turning pointbecause little did I know, I
mean, yeah, I knew I was kind ofanemic, but little did I know
that when I went to the hospitalthat they checked my iron level
and my iron level.
Was three, I can't remember whatnormals, what 80 to a hundred
(07:58):
something.
Taylor (07:59):
It's something like that.
Yeah.
Not, not three.
Robie (08:02):
Yeah.
I did have some other things Iknew was going on that I didn't
tell anyone because that's nothow I do it.
I just roll with the punches.
I was passing out.
if I stood up too quick, I'dhave to hold onto something and
I'd blackout You get thefuzzies, like a old black and
white TV, the fuzzies, you feellightheaded.
(08:23):
You're like, Oh my God, I'mgoing to fall out.
And there was multiple times Iwould go in my room open the
door.
fall down on my bed and wakeback up that was the, year I
started changing.
I started taking iron and backthen it wasn't easy.
I was.
15, 14, 15.
I couldn't just go to thehospital and get an iron
infusion or anything.
(08:43):
Or if I could, they didn't tellme back then.
and so they put me on irontablets and I had been, supposed
to be on iron tablets my wholelife.
I never liked them for obviousreasons but I started taking
them.
They told me to take a couple ofweeks off and I'm like, I don't
take weeks off.
I mean, I have to go run.
But so a year later as a junior,I went from running 34, 25.
(09:10):
I went back and I was on varsitythe next year and ran it was
like 17, 1726 or something likethat.
So I cut my time in half andthat's where my running career
really took off by sophomore oftrack season, so, it was just
crazy that my body was sodeprived of iron that as soon as
(09:34):
I started taking it, everythingstarted working.
Taylor (09:37):
Did they have any theories as to how, like, were
you having joint bleeds?
Or, I mean, I know even to thisday, doctors...
Try to say that GT patientsdon't have joint bleeds, but I
mean, were there any bleeds thatwere happening that you could
connect the dot as to why youriron
Robie (09:56):
was so low?
For me, I was just, I just hadnosebleeds all the time and it
was,
Taylor (10:02):
and that's where these surgeries came in.
Robie (10:05):
And I would just constantly have surgeries.
Now when I got older, I startedbeing able to take care of
myself a little better and tryto keep it as moist as possible
and not have as many bleeds, butother things would happen like
Because I wanted to play othersports too, I'd go hang out and
(10:26):
I'd play baseball and playfootball, and me and my brother
would wrestle, and I'd be blackand blue, so I'd get bruises
too, but as we progressed withmy running career, like the
second, you know, we'd Igraduated high school and went
to college, and I came back toFarmington and during that
freshman year of college iswhere I believe I first met your
(10:50):
mom.
And I didn't really meet her,but I like talked to her a
little bit, and she got incontact with me.
My step mom somehow, I don'tknow how they found each other
but then she started telling mestories about Julia and it was
just like, wait a second, thereis someone else out there with
this because I come from a smalltown and there was like no one,
(11:15):
no one knew it.
Go to the hospital like what isit again?
And you have to tell themeverything.
And so we would just go St.
Louis and go to Children's.
But when I first heard, I'mlike, Okay, I went through the
hardest part, I think, of, ofGT, and now there's another
little girl in Georgia that ishaving these issues.
(11:38):
What can I do to help?
Yeah.
Like, I want to help.
What can I do?
Because I want her to have abetter life than I did.
And at the time, all I could dowas run.
And so that's when we startedthe Cheerful Holidays run.
You're gonna
Taylor (11:54):
make, you're gonna make me cry now because I still have
that t shirt, the long sleeve tshirt.
We used to, we were the kids whowould fight over our parents
like t shirts and sweatshirts tosleep in.
And the minute mom got that tshirt from y'all.
It was like the prizedpossession of the three of us
(12:17):
yeah, we, we fought over thatand I not to pat myself on the
back, but I might havepossession of the shirt now.
So, so I'm the ultimate winner,but Dr.
Wilcox has one
Robie (12:29):
Yeah, we sent him one.
That's where we, found out abouthis research too.
And that's why we startedraising money and just send it
in.
I don't remember how much weactually raised.
It wasn't a whole lot, but itwas something.
We did it three straight years.
And I had a good friend help meput it on.
His name was Brad Coker.
And he did all the backgroundstuff and the behind the scenes
things and made it happen and Ijust Basically showed up and
(12:52):
raced and invited people and itwas a lot of fun.
Taylor (12:56):
I do remember that either it was advice from your
step mom, but you were yourstory was the 1st 1 where.
Cauterization was a no go fornosebleeds because it was
something that kept beingbrought up for Julia because she
had just as many nosebleeds asyou did when she was younger,
(13:20):
and there were some that theyjust couldn't get to stop, and
they wanted to cauterize everysingle time, and I just remember
Thank When my parents pushedback the, the response they got
from the doctors was, we don'tknow that will happen.
And my mom, I just rememberbeing like, no, no, I know
(13:42):
somebody personally where thishas happened.
And we're not we're not riskingthat.
So when you go in and youcauterize, you're fixing the
problem now.
But if you're having 26 of themdone, what, I mean, what's the
potential.
Negatives
Robie (14:02):
they did that a little bit and then they quickly
realized maybe we shouldn't dothis.
And they constantly packed mynose a lot and over time I
developed a little hole in theseptum they were like, well,
what can we do, do we just letit go?
Or find a way to put somethingin there to like, you know, keep
(14:22):
the nostrils separate.
And so they decided to come upwith what they called a button.
And all my life, it was, Hey,let's put this in.
And when I put it in, it'sbasically a little started
little cause my nose was little.
And then as I grew the hole willget bigger.
Well, they used to stitch thebutton to the septum and they
(14:43):
found out That was killing theseptum and it would deteriorate
the septum and the hole wouldget bigger So then they started
stitching the button to itselfand it would stay in there
better.
The only problem was if my nosewas dry and I get hit on it It
would scratch the inside of mynose, next thing you know back
(15:04):
to hospital, back to surgerybecause blood clots would get
between them and it would justpush the button out of place.
I remember one time I had asurgery on a Monday, cause
surgery days were Mondays andWednesdays.
I still remember them.
And I'd have them on a Mondayand this one particular time was
the only time I really remembergetting platelets as a little
(15:25):
kid.
And this time they ran it long.
And so it stuck out my nose andyou can, tell right here, I get
little creases here that wasfrom that time when the button
stuck out like a half an inchand it was out for like a week
like that to see if it was goingto shift again.
(15:46):
the next week I came back and.
The bleeding had stopped andeverything and they had cut, It
back to where it tucked back inmy nose and I was good to go for
a while until I got hit orwhatever the next time.
But it was like, you never knewwhen I went there.
What they were going to do,like, they tried so many things
(16:06):
back then they did the wholecocaine thing.
They tried that on me.
All I know is it didn't help me.
And my parents told me that Iwas.
A crazy man.
Like, I don't know whathappened, but they said, all I
wanted to do is run down thehallways.
I want to get on the elevator,ride the elevator up and down.
(16:28):
I jump up and down, jump up anddown.
I was just like going nonstopthroughout the hospital.
Taylor (16:34):
Who had to deal with you jacked up on liquid cocaine.
Robie (16:38):
Yeah.
they were great.
Julie always took care of me.
it was like my little minivacation.
I just show up and I knew, Hey.
This is what's going to happenthis day.
I get to go down to theplayroom.
paint porcelain things.
I get to play video games on theold school computers.
St.
Louis Cardinals Fred Bird wouldcome whenever once in a while.
(17:01):
WWF was in town one weekendwhile I was there.
And I got.
Two autographed pictures Ibasically lived in that hospital
for 18 years,
Taylor (17:12):
One of the things that I think is a trigger word,
especially for those of uswho've been in the community for
such a long time, is whensomebody is like, I just want my
child to feel normal.
Obviously, that's.
That's our trigger word, and Ithink it's because ultimately
nobody's really normal, like,everybody has stuff going on but
(17:34):
just because you have GT doesn'tmean that you've never let it
hold you back, and I'm notsaying that other people do, but
I'm saying that you are probablyone of the best examples of just
giving a big ol middle finger toGT your entire life, and being
(17:57):
like, You know what?
I'll deal with the consequenceslater.
I absolutely love that about youand we have there's a couple of
people in the community who I.
I always call them my redheaded,like the redheaded stepchildren
of the group, because y'all arethe wild kids.
You like the doctors will tellyou and you're like, okay, cool.
(18:18):
So do you know how to fix it ifI mess it up?
Because as you get older, Imean, does it get easier?
Or do you just learn how to dealwith it
Robie (18:29):
better?
Well, I'm still learning it'salways been improvise and
overcome.
you can't let anything defeatyou or you'll live in a bubble.
And living in a bubble is nolife at all.
Life, you gotta have fun.
You can't just sit back andwatch everyone else have fun
because that's not healthyeither.
(18:49):
So, that's why I decided to takethe bull by the horns and, be
smart about things.
Taylor (18:56):
air quotes for everybody who can't see him.
Robie (19:01):
It doesn't always happen because it's like, you know what
I know I shouldn't do this, butI really want to, and I'm going
to, I'm going to try it.
I'll just try it just a littlebit.
And just see, right?
Just, just a little bit.
We'll just see if it's okay.
Taylor (19:18):
What's the worst that
Robie (19:19):
could happen?
First time it doesn't, it wasnot bad.
Second time, like, oh crap, Iprobably shouldn't be doing
this.
Since I've grown older, I don'trun anymore.
Like run, run.
I graduated college, you know, Ipaid for my college.
I was very successful.
I feel especially overcoming GT.
(19:42):
it did hinder me running becauseof the lack of iron or the
roller coaster of my hemoglobin.
If my hemoglobin numbers weregood, then I was a very tough
runner.
But they weren't, then I wouldjust fall back to, second, third
place on the team or whatever.
(20:02):
one bad nosebleed and crosscountry season was in the winter
time.
So it was drier.
So I did bleed more in thewinter time.
And once it turned cold, thenthat's usually when I had my
first nosebleed, like tough oneof the college career.
And it's like, okay, how long isit going to be until I'm normal?
I got so many weeks until I'mready to go.
(20:26):
But I would get back and I wouldgo out there and give it all I
had.
Another thing that happened, Iwas training.
I never had rolled my ankle mywhole career, ever.
Like I'd roll it, but it wasn'tbad.
This time, it was bad.
I did it on a Thursday.
Warming up for a workout.
(20:48):
Rolled it, and I'm like, I godown, and I'm like, What just
happened?
I couldn't believe it.
I looked at my ankle.
My ankle was like the size of abasketball.
It was huge.
Okay.
Maybe not that big, but it washuge.
Taylor (21:01):
can imagine though, that it was
Robie (21:03):
pretty big, big.
I couldn't, I couldn't walk.
I was like, what's going onhere?
This is not good.
They go get the coach, they getthe cart, they wheel me in.
They're like, man, this is notgood at all.
You're, you're not going to beable to go.
Cause we were leaving, that wason a Thursday.
We were leaving Friday to go tothis race in South Dakota.
(21:25):
And I'm like, Coach, I have torun tomorrow because we just
fallen out of the rankings.
And he's like, dude, you'regoing to stay about, you can't
go.
And I'm like, what'd you say?
Did you say can't?
And so I went down there Fridaymorning.
I showed up Friday morning.
He's like, what are you doing?
I'm like, coach, we just fellout of the rankings.
(21:46):
I have to go run.
And he's like, you can barelywalk.
You can't run a five mile race.
I'm like, yes, I can.
He's like, okay, you're going tohave to go down the trainer.
You're going to, if they tapeyou up, you're going to have to
prove to me that you can runwithout a noticeable limp.
I'm like a noticeable limp.
So we go down, they taped me upand the whole time the trainer,
(22:09):
he's just like, are you serious?
You're, you're going to try torun with this.
So I go and we race and we beat,I don't know, I can't remember
the place that we got, we gotthird or fourth, I just remember
crossing the finish line and Iwas in so much pain and I just
crossed the finish line and Ijust went down and tell my
(22:31):
teammates came and picked me up.
Took me out of the, out of theway.
And just like, dude, I don'tunderstand how you just did
that, but that was a heck of arace.
Taylor (22:40):
your parents say?
When you told them about thatbecause this is that college,
Robie (22:46):
right?
This is a college.
Yeah, they were I mean, itdidn't shock them They were
like, yeah Yeah, that soundslike something you do Are you
okay?
Yeah, okay.
Yeah.
Well good race so
Taylor (23:03):
How long was the recovery
Robie (23:04):
on that?
It was, a noticeable coupleweeks.
I still, I mean, I didn't notrun.
I kept running.
Just loosened it up, you know.
I did take it easy, but itwasn't like, hey, I'm not gonna
run today.
It was ice bathing it all thetime and I remember going down
there two or three times a dayjust to get it better.
(23:28):
Since then, I, you know, I stillplay stuff I'm not supposed to.
I still play softball.
I got, I got a hopefully achampionship to win tonight,
but...
We'll see about that leaguechampionships.
But no, it's, I mean, I've hadnumerous injuries on the ball
field.
Taylor (23:44):
I was going to say since, I mean, just in the past
couple of years, being yourfriend on Facebook stresses me
out because when it's softballseason.
I think at least once every twoweeks, there's a new injury that
you're like, well, did thistoday.
Robie (24:00):
So I've always loved baseball growing up and I was
never allowed to play it.
So as soon as I graduatedcollege.
And I got married, I'm like canI go play softball?
So we had a little church teamand that's what got me started
in softball.
And then it kind of took over mylife for a little bit where I
was playing two or three nightsa week and then playing all
(24:21):
weekend a couple weekends amonth.
That's
Taylor (24:25):
just out of the blue, you becoming so passionate about
sport.
Robie (24:29):
It was been quite a few injuries with it.
I started out in the outfieldand I broke a rib diving and
jumping over a fence I broke mywrist diving after a ball in the
middle of February.
as I got older, I startedtearing hamstrings and calf
muscles.
the real injuries startedhappening.
one day in December I was out ata tournament and took a swing
(24:53):
tried to run out of the box andI kind of stumbled I didn't fall
down, but I knew somethinghappened.
I thought it was my back, wentto chiropractor for a while.
Insurance denied me multipletimes for an MRI I went through
physical therapy.
The chiropractor tried to get anMRI.
They denied it.
I went through six weeks came inone day on crutches and my
(25:15):
physical therapist was like,dude, I don't know, but I can't
walk.
And for me to say, I can't walk.
It's bad.
He's like, oh, this isn't goodthen.
There's something major wrong.
I'm not touching you until wefigure out what's wrong.
Yeah.
Yeah.
He got denied for an MRI too.
And then, they sent me to a backspecialist, they denied them,
(25:37):
finally, they pushed through,the MRI of my back, they're
like, oh, well the good news is,your back looks great.
The bad news is, we need asecond MRI, because we think
it's your hip.
I was 37 at this time.
Still playing ball.
Still doing all that.
It was April.
I played a tournament.
came home.
(25:58):
and then drove to St.
Louis for Easter.
Got to St.
Louis, got out of the car Ican't walk again.
Taylor (26:05):
pair of crutches, of course.
Robie (26:08):
Got to, got to.
And so I had them, took themthere My wife was kind of mad at
me for showing up so late onEaster.
And then I woke up the nextmorning.
I'm like, honey, I can't move.
She's like, well, you playedball all day yesterday.
I'm sure you can walk enough to,go to church with us and all
that stuff.
And I'm like, I'm really trying,but I really can't, but I can't.
(26:30):
And little did we know that Ihad a broken hip.
Taylor (26:34):
So it was broken the entire time.
Robie (26:37):
Yes.
So I had a BN, a vascular neurocirrhosis where I lost blood
flow to my joint, my bone, thebone started dying.
So it had probably already died.
And then in December itfractured by the time we got the
MRI in April, it had alreadycollapsed.
So my bone wasn't round anymore.
(26:59):
It was like a half moon and thetop had just collapsed on top of
each other.
And it was very painful, butself employed, improvised,
overcome, hip, working, playingwhen I could.
We had just started this newteam and I had to do what I had
(27:19):
to do.
And so little I know, thatOctober 2018, I had my first
surgery.
Taylor (27:27):
Well, it was a hip replacement, right?
Robie (27:29):
It was a full hip replacement at 37.
First time they were reallycutting on me, I guess you could
say.
All my other surgeries, no one,they never really cut on me.
And this was a very stressful,nervous time.
we had two boys, so.
For me, it was like, I'm goingto be all right, right?
(27:50):
Yeah, I'm going to be all right.
I can do this.
And in the back of my head, backof my mind, they're always
thinking, I hope I'm going to beall right because I have a wife
and two boys that depend on me.
And I just have to be okay.
my oldest one was, in thirdgrade.
(28:12):
So he was probably eight.
And so we do consults, make aplan, talk to hematologists, and
wound up using platelets.
I'm one of those that have neverhad milo 7.
It's always been platelets andblood and iron infusions I had
(28:32):
one unit of platelets beforesurgery.
And I told the surgeon, I bleed.
I'm really good at bleeding.
So, be ready.
He's like, oh, we'll be fine.
in and out 45 minutes to anhour.
no big issues.
So we had the first unit, I hadchecked I was doing good.
it was like 14 before thesurgery.
Taylor (28:54):
Which, by the way, those are like pro numbers for
hemoglobin, guys, like GT14,I'm, I'm impressed.
Robie (29:02):
I was like feeling good and the crazy thing, like two
weeks earlier, I was like at 15,9, I'm like, man, I'm feeling
great.
Oh yeah.
You were
Taylor (29:09):
like, heck yes, let's have this
Robie (29:10):
surgery.
Right.
And so something happened forlike two weeks before surgery
that I don't know what, but Iwent from like 15, 9 to like 14,
2 and I'm like, just another dayin the walk in the park kind of
thing.
Yeah, well after that we dosurgery and my surgery was
supposed to be like eighto'clock in the morning or
something like that Well, thenext thing, you know, it's like,
oh we're going at noon.
(29:33):
Well, I saw I'd go back in theback and Everyone's telling the
waiting room and it's no longernoon It's two o'clock and then
it's three o'clock and I'm likewhy?
like people are going in peopleare going out everyone's having
surgeries, but Not Robbie, he'sjust sitting there waiting.
And my only thinking is, okay,they're scared of what's going
(29:55):
to happen.
So, and little did I know thatI'm guessing that had to be the
plan.
Taylor (30:03):
Yeah.
Somebody was like, are you surethat you can get this done in an
hour?
Robie (30:07):
And so I just sat back there, prepped and waiting, had
my platelets and then Going tosurgery at like three o'clock or
something like that.
Well, six hours later, I showedup in my room.
I was in surgery for like threehours or four hours.
I was in recovery for like twohours and I went from a
hemoglobin of 14 ish to loweights and I was still dropping.
(30:31):
So if I dropped all the way downto seven.
Which I was still like, seven'snot bad.
I'm alright, I can do this.
But I was getting pretty, like,lethargic because I hadn't been
that low in a long time.
And I was older.
I was 37.
So, that was not the best thingfor me.
But I was in the funny thing waslike, oh, it's a hip surgery
(30:54):
now.
And back then it was like, hey,you coming on Monday?
Have the surgery.
You stay Tuesday.
You go home Wednesday.
You'll be, you'll be getting outin three days.
I'm like, wow, that's prettyimpressive now.
It's Hey, you come in and havesurgery.
You're out like outpatient.
Yeah.
Right.
Yeah.
So I went in on a Monday, hadsurgery.
I was there Tuesday, Wednesday,Thursday, Friday, Saturday,
(31:18):
Sunday, and Monday.
And I got the whole Monday.
So I was basically there eightdays.
It was really a rollercoaster ofthe, of the hemoglobin and
watching my blood go down andthen stop and then start to
slowly creep back up.
I think when they let me, theylet me go I had three units of
platelets and they had ironinfusions for five straight days
(31:44):
to try to get me pepped up, Iguess.
Taylor (31:47):
what happened?
Was it just...
You bled so much during surgery,or did, did you have a bleed
that didn't heal after thesurgery?
Robie (32:00):
So that I'm not really sure on.
Okay.
I didn't, I think, this is allyou making this up in my mind.
Yeah.
Because I don't know really, butI think I bled a lot.
Yeah.
In surgery.
And I know the surgeon, well, Iknow the surgery had to have had
some, like, conflicts because ittook so long.
(32:24):
So I don't know really thedetails of what was in there.
I mean, they never really toldme anything that happened.
But I was in there way too long.
I bled way too much and they gotme stitched back up.
They gave me Amicar, I believe,out after surgery.
I had a unit of platelets after,and then the iron infusions.
(32:47):
But that got me, that took along time to recover from.
I have something to compare itwith now because I've had the
other hip done and it was nightand day.
Yeah.
From the surgeon to hospital,other than the second hospital
trying to give me bloodthinners.
(33:08):
I think I called you that day,too.
You
Taylor (33:09):
were like,
Robie (33:10):
Hold on.
My hematologist.
They're trying to give me, notmy hematologist, this hospital's
trying to give me bloodthinners.
I'm telling them, do not give meblood thinners.
Like, no, everyone has them.
I'm like, I'm not everyone.
And they're like, well, ourhematologists, they've seen lots
of GCP patients.
I'm like, you have no
Taylor (33:27):
idea.
Don't trust you.
Don't trust you immediately.
Yeah,
Robie (33:30):
the second, the second hip surgery was phenomenal.
And this is the one I had to,you know, I was in great doctor.
He was like, I've done, I wasthe first one in Kansas city to
be doing these.
I gotcha.
We'll be fine.
Walked in, felt comfortable.
This time they gave me two unitsof platelets before.
(33:51):
And then, I had needed nothingelse.
Like, he was in and out.
Forty two minutes, I think iswhat he told me.
And, he was done.
And, it was just, That hip, theleft hip feels way better than
the right.
Still, even though it's new.
The right one took so long forme to recover because I lost so
(34:14):
much blood.
Yeah.
Second one, I was like, man, Ithink I can play ball today.
Taylor (34:19):
I actually think I remember you making a joke like
that, like, within days of youbeing home from surgery.
But I can assume that theanxiety probably quadrupled
before the second hip surgeryjust because of how bad the
(34:40):
first one I went, notnecessarily bad, but
unexpectedly, the first one wentright.
Robie (34:45):
I was, I was definitely more nervous the second time.
I was five years older, I guessI was 44 years, four years
older.
So, yeah, so I was definitely alittle more nervous.
The kids were old enough tounderstand kids were older, they
understand.
Now, my old, my, my firstsurgery, my oldest one, he was
(35:07):
kind of old enough tounderstand.
Mm-Hmm.
And he was like, he was soscared.
He thought, he thought I wasgonna die.
He really did.
Yeah.
He came to the hospital, hecurled up in my bed, didn't
wanna leave.
He was just so worried because Iwas in there for eight days.
The second one.
I was more worried than anyoneelse because it's like, okay, I
(35:28):
survived this once, you know, Ithink I'm pretty tough, but, you
know, I just don't know whattomorrow has anymore because you
just don't know.
And I was nervous.
I tried to play it off as itwasn't because that's what I do.
Taylor (35:45):
Yeah, I got this.
No big deal.
Improvise
Robie (35:48):
and overcome.
So.
But I knew I was in good handswith the surgeon and I just
trusted him and trusted the themedical team and They came
through I was in and out ofsurgery and you know A couple
hours was from the time itstarted the time it ended the
(36:09):
surgery itself was only 45minutes 42 I think is what he
said and I was stitched up,minimal bleeding he said it was
one of the smoothest ones he'sdone.
And it just went, everythinglined up, perfect the platelets
did their job, and the speed ofthe physician definitely helped
(36:30):
the second time.
And so, in the hospital forthree days, almost like a normal
person.
Taylor (36:38):
Almost.
Almost.
You didn't get blood thinner, soyou're not quite normal.
Robie (36:44):
So the only reason, really, they held me for the
three days was because, wewanted to make sure.
They were checking my levels andwe're just gonna hold you just
in case you have anypost-surgery, bleeding, and we
don't wanna send you homeprematurely.
But I was great.
I was up and I mean, I waswalking, but, you know, I wasn't
(37:06):
like running.
I had to have a walker and allthat fun stuff, So that's kind
of that adventure.
And since then been pretty goodon not hurting myself.
Other than, you know, thetypical take a hundred mile an
hour softball to the chin
Taylor (37:21):
I was about to say, yeah, such malarkey because you
have been injured since then,just not, those are, nothing.
Well, so how old were the boyswhen you first, like, was it
something that y'all always talkto them about like, Hey, dad has
(37:41):
this.
Thing, like, as of right now,with my boys, they're seven and
five, they just know Aunt Juliahas a bleeding disorder, and it
means we just have to be carefularound her is that kind of the
approach that y'all did or didyou, you know, wait until they
were a certain age before reallytalking about it?
Robie (38:03):
I don't remember like really sitting down and talking
to them about it other than.
Before the surgery and we talkedto my oldest one and told him
everything.
He, I mean, he knew I likebruised all the time and all
that, but he was still not oldenough to really understand all
(38:23):
of it.
And still now, I mean, he'll askquestions and I'll, I'll tell
him and we wrestle.
It's fun for now, but he'sgetting big.
I was about
Taylor (38:33):
to say, he's a
Robie (38:36):
teenager now, he's 13 and he's, he's very athletic and
he's pretty strong.
So it's kind of, I got my, mydays are numbered for before I
can't wrestle him anymore, but Istill gotta let him know who dad
is.
So yeah.
Yeah.
My youngest one.
He's, he is like the life of theparty.
(38:58):
So he is not, I mean, he'sathletic and stuff too, but he's
just not, he is not mycompetitive clone, if that makes
sense.
Right.
My oldest one, he is me, he isme without GT Oh my gosh.
So my, oh, it's gonna fun towatch him and Yeah.
High school and college andwhatever he chooses to do.
(39:21):
But yeah, it's, it's crazy whenyou have kids like.
You see your personality inthem, you know what they're
going to do before you do itbecause that's what you would
have done and it's just, it'sjust interesting.
Yeah, so that's kind of cool.
Taylor (39:39):
Well, so I feel like with guys, it's different than
with girls, right?
Like with guys, with GT, havingkids is always still on the
table.
Whereas with like girls, it'snot necessarily, some can, some
can't, right?
But no matter what, it's.
(39:59):
It will end up being intense.
Did you and Ali before havingkids, did you do any type of
genetic counseling or anything?
Was it one of those, this is sorare, we're not really that
concerned about it or, you know,well, you're smiling.
Robie (40:21):
We had, we've had two babies that are miracles.
They really are.
When we tried to have Tucker, wecouldn't get pregnant.
We couldn't get pregnant.
And then we got pregnant throughhaving help and we had a, we
lost our first one.
(40:42):
We tried again.
We lost, miscarried the secondone and then finally we got
Tucker and we at that time wewere like, we hope he's, we hope
he's normal, but even if heisn't, like who else better to.
To have him than me, like, Ican, I can take care of them.
(41:05):
I can do it.
And I just, we just wanted, wewanted a kid so bad that it's
like, you know what?
If it happens, then we'll.
We'll deal with it, then we'llroll with the punches, we'll
we'll do it but we did have himtested after he was born to see,
(41:25):
and he had, obviously he's acarrier, but he doesn't, he got
the good gene from his mama, soand the same with my youngest,
we never had him tested, buthe's 10 now, and, and never
Taylor (41:40):
shown any symptoms,
Robie (41:41):
yeah, it was very hard for me because all I can give
them is GT.
That's all I have.
And I just wanted to have achild that could play sports,
that could do whatever he wantedto do.
And it happened, but it was soscary.
(42:03):
Going through that time becausewe didn't have, her tested to
see if she was a carrier oranything.
we just did it and he came anddidn't find out if he was a boy
or a girl.
We had names picked out and wejust enjoyed the time when he
came out, we're like, man, lookslike a Tucker to me.
And we named him right there andthe rest is history.
(42:27):
But yeah, it was crazy times.
from a guy's perspective, alwaysin the back of your head, Hey,
what if, cause we know, I mean,it's all like, Hey, I have a
good gene and a bad gene.
No, I have both of them.
They're both bad.
They're both terrible.
So.
The best I could give them is,is not good.
So, we knew the risk going inand we decided, you know, we're
(42:53):
gonna roll the dice and go withit because that's just what we
wanted.
Taylor (43:00):
Well, and like you said, even if one of the boys had had
GT, Who better to parent himthan somebody who, who has grown
up with it and who knows how tomanage it on themselves.
So, and I like that perspectiveon it a lot, because it's, if
(43:22):
you think about it in a way oflike, if your parents didn't
have GT, right, they had nopreparation whatsoever.
And, but you have some, so Ilike that perspective a lot, and
I think that that will sink inwith a lot of.
(43:43):
dealing with GT because I thinkmen are very hard on themselves
when it comes to taking care oftheir family and, and having
kids and stuff where not thatwomen don't, but you shoulder a
lot of the responsibility ifsomething doesn't go right, but
(44:05):
then you internalize that.
Even us just talking about thisnow just shows that, I mean, it
is okay.
Like it's, it's okay for certainthings not to end up okay.
And then when they do end up,okay.
Like, oh my gosh, like how muchmore amazing is that?
So yeah, I I'm just so proud ofyou.
(44:30):
Like I'm not trying to be cheesyor anything, but I am, I'm just
so proud of you because it's,it's not easy having GT.
It's not easy.
I mean, it's not easy being asAnd I don't want anybody who
listens to this think thatyou're selfish or anything like
that, because this, yourcompetitiveness, your, your
(44:53):
wanting to go out there and playsports and everything, you can't
help that.
Like, that is part of who youare.
And if you were to even try tolock it away, I mean, I, I don't
want to imagine how, yeah, like.
(45:14):
Yeah.
Like, so you made it work foryou.
Robie (45:19):
like with Cross country, back then, it was like, that was
my way to escape reality.
Like I could go out and I couldgo for a run and I could go push
my body to the limits and Icould forget about home life.
I could forget about everythingelse that was going on that
might not have been so good.
(45:40):
And.
It was just me in the pavementand it was just me out there
doing me and nothing could stopme, but me.
And that's, I mean, that's thesame thing I had.
I gained so much of myconfidence as a person through
(46:00):
sports and being able to, eventhough when I was failing,
failing at sports, it was like,I'm still gaining confidence
because I know I'm putting thework in and one day I will see
the results.
And that goes for any of us andanything we do, like, you can't
(46:22):
quit, you can't just stop doingthings because it's not working.
If you truly want to dosomething, if you truly love
something, you have to work hardfor it.
That's marriages, that's jobs,that's athletics.
If you truly love it, you haveto work hard for it.
(46:42):
And don't let anyone get in yourway of telling you that you
can't do it.
You control you and one day, youknow, I'm going to look back and
be like, you know what, I justcan't play ball anymore.
I can't do it physically.
And that's when I'll have tostep away.
(47:04):
And, but luckily right now it'slike, I'm getting there.
I'm close to like, I'm justgonna sit back and watch my kids
now.
And cause it's so much funwatching those boys go out there
and just play ball and they bothplay soccer.
Well, this one runs crosscountry.
Taylor (47:24):
they're super smart kids, they play soccer.
Absolutely.
Only the best sport in theworld.
Well, we also know though, like,the day that you have to, like,
step away from from softball, Ihonestly see you just, like,
redirecting that focus.
(47:44):
Into something that doesn'trequire you to move around too
much.
So like in five years, I, Ifully expect that like Robbie is
the.
The Midwest champion of cornholeor something like you know,
just, or of pinging pong like,yeah, I, cause first never I was
(48:07):
running, then it was softballand I don't see you stopping.
No,
Robie (48:13):
we shall see.
Am I just, am I just sit backand enjoy being a dad and
watching the boys play for awhile, and then maybe when I'm
50, I'll make a comeback.
Taylor (48:25):
Come out of retirement.
Well, so we always ask thisquestion in every single
episode.
It's kind of become a tradition.
If you were to talk to youryounger self today.
What would you tell him aboutwhat the future looks like?
Hmm.
Robie (48:45):
Well, it's bright.
It's always bright.
So, I would always, like, as ayoung, as an old GT patient to a
younger one, I would say, I canlook back on my life now and
know, you know, had I done A, B,and C, my life would probably
(49:05):
have been a little better.
Had I taken a little bit big,better care of myself as a
younger person With GT because Iwas a little rebel.
I guess you could say Now I'mnot saying don't do everything I
did, but I'm saying hey takecare of your nose a little
better.
You know all that stuff and Withtechnology now it it's a lot
(49:30):
easier to you to to make sureiron levels are up to make sure
your blood counts look good andBy doing those kinds of things
Athletically I would have beenThat'd been a better route back
then.
So if you look in the future,you know, whatever, but in
general, everything else though,is, you know, keep having fun,
(49:55):
keep living like you want tolive, not that you are in a
bubble, like don't ever stopbelieving that you can do
something that people tell youcan't just Just keep trying and,
and, and put the work in and theresults will happen.
And that applies to everythingin life, relationships, sports
(50:19):
put the work in and the resultswill come.
Taylor (50:22):
So in closing, I do want to extend another massive thank
you to you.
You were, you didn't know what apodcast really was before this.
I
Robie (50:35):
mean, I heard about them before, but.
Taylor (50:38):
I mean, you know, it showed your age
Robie (50:40):
a little bit.
I did try to, like, listen to ita couple of years earlier today.
Like, I was, like, two thirty.
I'm like, I gotta, I gottafigure this out real quick.
And I listened to a little bitof the one from the, from
Boston.
I'm like, okay, I think I
Taylor (50:54):
got the hang of this.
Yeah, it's not, it's nothing tooscary.
And you did good, kid.
good.
Robie (51:02):
I guess you can't teach an old dog new tricks.
Taylor (51:05):
For everybody, I do encourage you to visit our
website at www dot QRGT dot org.
You can also connect with us onFacebook, you can reach out to
us via our Cure GT website, andwe're also extremely proud of
our amazing support group onFacebook, which now we have
around 830 members.
(51:26):
It is an absolute testament tothe incredible strength and
solidarity of our community whohappen to be scattered
throughout the entire world.
Everyone in this group iswelcoming and understanding, and
they make it just an incrediblesafe space.
And also, as I always say at thevery end, remember, while you
(51:46):
might be one in a million,you're definitely not alone.
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