Finding strength in each other, day by day

Transcript:

Joel
Hi, I’m Joel Alsup and this is St. Jude Storied Lives.
It’s a podcast about the people who make St. Jude Children’s Research Hospital such a special place. Families are a big part of that story.
I’ve known a lot of St. Jude families over the years. One thing I’ve noticed about them is how their relationships and priorities change during treatment. Today I want you to meet Luke, and his dad Barry.
They’re just two parts of a really big family. Seven kids, all the way from grade school to early twenties. That means there’s lots going on, every day of the week. But when Luke was diagnosed with a brain tumor, their focus shrank way down…to a father and son, together, fighting for a future.

Luke (intro clip)
I feel like that instead of another person getting it, that I feel like, it should be put on me. Because I would rather me have it than somebody that you know, is smaller. I just rather it been me.

Barry (intro clip)
I tell everybody the strongest human being I ever met in my life, through an entire career at state police and 51 years of living, is my son.

Joel
A man with seven kids has likely spent a lot of time thinking about what kind of father he is. And when I asked Barry that question, he said one word, right away: Overprotective. And sure enough, when Luke got diagnosed, Barry knew the only place he could be was with his son, here at St. Jude.

Barry
When we found out that he was sick, it felt like my whole world came down around me. My children are everything to me, so I'm overprotective. But also I'm a very loving, giving, caring deeply father, hopefully some of them would agree.

Joel
What do you say to that, Luke?

Luke
I 100 percent agree with that. I know before St. Jude and during it, my dad was my biggest idol, my hero, and still is to this day, somebody I look up to, really. Wanna be exactly like him.

Joel
You guys are making me emotional two minutes into this. (laughs) As a father myself, I feel it. I feel it. So you know, you talked about being a state trooper for years. Do you feel like that affected the way that, other than just being overprotective, the way you saw your kids, or treated your kids, or what you allowed them to do?

Barry
Yeah, a little bit. Technology wasn't as good when I was a kid, so my parents had much harder time keeping up with me than I keep up with them. I still have all of my kids, even my 23-year-old, on Life360 if that tells you anything.
So doing the job, I tried to spend the majority of my time not bringing that home, because you can't be like that at home. You've got to be dad, or you got to be Barry. And so bringing that into the home, it was something I absolutely didn't wanna do, but it was also something that I carried over to watch over them and protect them. So it definitely helped, but I tried not to be a trooper in my house. It doesn't work.

Joel
You know, speaking of that, watch over them, you know, you got a big family, lots going on. When did you start to notice maybe something was up with Luke, that something was going on?

Barry
It started January of 2021, and he started throwing up for no reason. And at first, of course, we take him to the doctor, stomach virus, and it just kept going. It didn't stop. And it was very sporadic, and there wasn't anything that triggered it, or anything that we could point to that was this is what's making him sick. So after several ER visits and several pediatrician visits, we finally got him into a gastroenterologist, a pediatric and they immediately thought it was his gallbladder. They scoped him, thought it was his gallbladder.
And I remember having a conversation with my wife, who is a registered nurse, and I knew at that point, I said, "Something is really wrong with Luke. I don't know what it is, but something is really wrong with him, and it's gonna be bad. I just don't know what it is, yet." Her nurse mode kicked in and said, "Well, you just can't think like that. Let this play out, and let them do their jobs." And I said, "It's not his gallbladder, it's something bad."

Joel
And what steps happened after that?

Barry
So in May, they decided, "Let's take his gallbladder out. That's gotta be it." Thursday, he's back in the hospital, throwing up uncontrollably.

Joel
Oh my gosh.

Barry
With stitches all across his abdomen. So Thursday night, they get us in the hospital. They get us checked in. They've done every scope, and every ultrasound, and everything that you can imagine on his stomach, and they found nothing. So Sunday morning, the doctor comes in our hospital room, and I remember he looked at Luke and said, "Luke, are you ready to go home?" And Luke said, "No, I'm not. I'm sick. I wanna find out what's going on."
So that's when I asked the doctor I said, "Can we do anything different? It's not his stomach. Can we look at his head? Can we look at something different?" And he said, "Okay." He finally relented and said, "I’ll order an MRI from Tuesday."
He leaves, and Sunday, we keep going, and he just is sick and won't stop and won't stop. And finally, I went to the nurse's desk and I went Dad mode, I got ugly. And they ordered a CT of his head. And 20 minutes later, they brought him, they took him down, and they called us a couple hours later, and they found a golf ball-sized brain tumor in his cerebellum, and it's pressing up against his brain stem.
So Monday or Tuesday is when he had brain surgery to remove the brain tumor in Shreveport. And that was about a six, six-and-a-half hours of really...that was a long time to wait. That was a long six hours. Little did I know his surgeon, I think did a lot of her training up here under what would be Luke's oncologist here.
And so she called him and said, unbeknownst to us, and said, "Hey, I think I've just took a tumor out of a 14-year-old kid, and I think it's medulloblastoma." And Dr. Gajjar said, "Send him up, we'll take care of him." And so eight days, nine days later, he was on a plane to St. Jude.

Joel
Hey everybody, it’s Joel. I just want to jump in here and give you a little bit more context. It turns out Luke fit the criteria for a particular clinical trial, and that’s why he was accepted at St. Jude. The trial based the treatment on clinical risk and the molecular traits of the tumor he had. We’ve put a link in the show notes to give you more information about that trial. Luke didn’t know all those details back then of course. He just wanted to feel better.

Luke
I mean, at the time, I don't know if I fully grasped the thought of, you know, brain cancer or tumor. Now, when I hear the word brain tumor and I think about me, and I'm just like, I think of, you know, the hard times at St. Jude, but then I'm very grateful is kind of like the right word, I guess, to say.

Joel
Yeah, yes. It's an odd word to say, but it is. I feel the same way.

Luke
I'm very grateful that it happened to me, that I feel like that instead of another person getting it, that I feel like, it should be put on me. Because I would rather me have it than somebody that you know, is smaller than me, or I don't wanna say this, but not as strong, but I just rather it been me. And I think I'm grateful for that.

Joel
That's a unique perspective, man, it's amazing to hear. So, Dad, you know, talked about getting up here to St. Jude, did you know anything about St. Jude, before you got here? What was spinning through your mind as this whirlwind is happening. Surgery, then heading to a hospital not in your hometown?

Barry
My first thought was, it's got to be bad, we're going to St. Jude. My only experience with St. Jude was the commercials. And even then, I don't know that I ever really paid attention to the commercials. Childhood cancer wasn't anything that was even on my radar.
So I remember when I got to his room, I beat him to his room. I drove up. He flew up. I'm not gonna tell you how fast I went, but I beat him to his room. And I remember standing in his room and just looking around, and it hit me that we were really at St. Jude. And I was overcome.
That was the scariest time for me. I guess it was maybe the first or second day we were here, and his doctor came in, and that was the first time we'd ever met his doctor. We were all scared. Luke was particularly, he was really scared.
He was laying on his side and he was crying, and his doctor came in and said, "What's wrong with Luke?" And I said, "Doc, he's just really scared." And I'll never forget, he leaned down, he put his hand on Luke's shoulder and said, "Luke, I promise you, you're gonna be okay." And that was when it turned for me. It all changed. And it never got bad again. It stayed. It was all completely hopeful. And I know that St. Jude's not in the business of ever giving false hope, but our hope and our faith never wavered at that point.

Joel
And how long did that treatment last? And what all did it entail?

Barry
We were here about seven or eight months. He had to have six weeks of radiation on his brain and his spine, so five days a week for six weeks, and then he had to have four months of chemo.

Joel
And, Luke, for you, how did that make you feel? How was the radiation and the chemo?

Luke
The radiation was a good nap.

Joel
(laughs) That's a great description. I'm gonna use that from now.

Luke
(laughs) I mean, it was just laying down. Got to keep your head still and then I was just out after that. I mean, something my dad always taught me going through it was you take one day at a time. Like, you don't worry about Tuesday until Tuesday gets here. You worry about Monday when you're on Monday. Like, with that mindset, for me, it just feels like it just breezed through. And for me, honestly, I mean, it feels like I had it light. I feel like I had it small.

Joel
And just for you too, like being a teenager when you're here, did you feel like you were missing out on anything?

Luke
I mean, at the time, I was just like, "It is what it is, just another speed bump or something that I'm gonna bounce back from” at that time. And now I'm here, and it feels amazing. I mean, really, St. Jude really saved me, so this is amazing.

Joel
I'm glad you're here. And, Dad, I know too. Like, what did you do to help him? Because I know I wasn't the easiest patient. I had treatment about as long as Luke did. I know there were days that I wasn't as easy. I would speak like he does now and be like, "Oh, it was what it was." I know it wasn't what it was every day. How did you help him get through this?

Barry
It was, I don't even know that I would say, tough love. It was, you know, he had his days where, I will say, one of the strongest human beings I've ever been around in my life was my son. So it wasn't a lot of tough love. There were days when it really beat him up.
And I remember in particular one day we were at the Ronald McDonald House. We were going through radiation. I didn't know this, but he asked his mother the week before. I didn't know he asked her this question, and I knew it was coming, I just didn't know how I was gonna answer it. So I prayed a lot on how I was gonna answer it when it did come. And so he asked me, "Dad, why me?"
And out of nowhere, I said, "Well, why not you?" And he kind of looked at me funny, because that wasn't the answer he was looking for. And I said, "What makes you different than everybody up here? What makes you different than every other kid that's up here fighting this battle?”
What I was trying to tell him was, "Don't be so down that you think that this is the worst thing. Everybody right up here is doing this. So whatever it is that you've got to get, to get up and fight this monster." And so that was just what I just wanted to instill in him, was give him that strength to just keep pushing through. Let's get through Monday on Monday. Let's not worry about seven months from now.

Joel
Well, I can see that perspective definitely rubbed off on him. That was just an amazing thing he said a minute ago about being able to be the one to take it. That was awesome. You guys are amazing. And, Barry, thinking about it too from the standpoint of being a dad to somebody, do you feel like your experiences just being a dad helped you navigate this tough situation any better?

Barry
Maybe. But I'll be honest with you, I don't think so. You always, as a father, you always worry in the back of your mind, "Well, what would happen if I found out my kid had this? Or what would happen?" And I can honestly tell you, you're not prepared for that. No matter what you think you're prepared for, you are not prepared for that, because when it hits, it's a whole – it changes everything.
And as much as I'd like to say that between Luke and I, that you know, and he fought and I stayed and helped him push through it, there is no way in this world that I would have gotten to that point or even been able to do it without my wife, and my kids, and my family. My wife told me, she's a nurse, we have an 8-year-old. Hadley was five at the time, and she said, "You go to St. Jude. I got this."
And so if it wasn't for my wife and my kids backing us and backing me, there's no way that I could have gotten Luke through this. So the support system that we had was just as important as us being up here doing it. Without that, we wouldn't have been able to do it.

Joel
I heard you kind of had a special homecoming. This is for either one of y'all to describe that.

Luke
I mean, I didn't know at the time. I just thought, you know, "We're going home." And I remember that since it is like, a five or six-hour drive back home to Shreveport, like every hour, I would punch my dad saying, you know, "We got one more, we got three more hours." And I remember, I don't know where we were at, but we stopped at a gas station because my dad said he had to use the bathroom.

Barry
We had just crossed into Louisiana from Arkansas.

Luke
And I'm like, "What are these cop cars? And what's this limo doing here?" And my dad came back, and he was like, "I think you should get out." And I remember I saw my stepmom and Hadley coming out of the limo and giving me the biggest hug. And I was very, very surprised. I didn't know what was going on really. And they just said, "Get in the limo, we're taking you home." "Okay."

Joel
Awesome.

Luke
And then just the limo ride, it felt like the hour went by really quickly, a lot quicker than –

Joel
Time goes a lot faster when you're in a limo.

Luke
Yeah, time goes a lot faster when you're like, "Oh, I can lay down on this couch." It was really fun, and homecoming was really amazing. And I remember going to my neighborhood and seeing people that I went to school with, people that lived in the neighborhood, just holding up signs like, "Welcome home, Luke." I started to cry then.

Joel
Oh, yeah, it's emotional. It's a very emotional moment.

Luke
Then seeing all my friends saying – I remember the first thing I said to my good friend, Aiden, "Hey, you should shave." And he had like, patches all over on his face. And I'm like, "Maybe we should get the chemo cut or something." (laughs) It was really good. I really liked it.

Joel
And, Barry, from your side of things, how did that come about, this special ride for that last hour home?

Barry
One of my friends for the state with Louisiana State Police he and I were lieutenants together, and he said, "Hey, I'm thinking about doing this. When do you come home?" And so it snowballed from there, when we finally knew, nailed down the date that we were coming home, he had set up the limo, and he'd set up not only the state police, but other local agencies to all fall in and give us a police escort home. So that was his doing.

Joel
That's awesome. And I do remember one thing too about when I got home, because I had that very emotional moment too. But you get home and you feel like, "I've had chemo, I've done all this, like, my parents are gonna go easier on me for a little bit. I got a little bit of a free pass." Do you feel like you have that, Luke? Or, Barry, do you feel like you were gonna give him that?

Luke
Oh, let's say, like, right after that, I was still in like, the coddling mode of, like, what St. Jude let me do like, oh, I can play video games upstairs, and, you know, decompress and not having to do chores. And I remember I would win every board game I played with my family. I was like, "You really gonna beat the cancer kid?"
And then I'm still, like, kind of in that mode being coddled right now, but I'm trying to work in to like, when my dad tries to instill with me, with the tough love like, "You're a 17-year-old kid. Come on. Come on now." I'm still trying to get there. Chores are not that fun, neither is school. So, still trying to get there. I’ll say that.

Joel
And, Barry, for you too not just, you know, Luke says coddling, but it's also love and a productive bubble that you have here. What's it been like transitioning back out of that protective bubble and knowing St. Jude is still there for you, but you're not within the campus?

Barry
Going home was kind of tough, just because we felt like we lost that security blanket, and I knew that if anything happened, and we did have stuff come up while he was in here and treatment that, "Oh, I gotta get him back to the hospital right now." We had that option. I mean, we were able to come right back here from housing and get right back in to treat whatever. So losing that security blanket when we went home was huge for us.
He did go home with a port in his chest. He did go home with a feeding tube that we still had to feed him. And we still had that for a little while, that coddling, and maybe, you know, that protective bubble for sure for a little while.
But he finished the rest of that year. It was his freshman year. He finished that at home just because of his immune system. But then as summer rolled through, and then he started school back and he was actually able to attend the 10th grade in person. That's when it just kind of, "You're back.”
And it's been, it's a transition, for sure. He had a difficult time, a little bit of a difficult time relating to his friends when we got home, we kind of didn't see that coming. You know, kids that would worry about the girl saying no to them when they asked them out, or the C that they got on their test. And Luke was like, "You're worried about that?" So it kind of took a little bit of a transition, but it was very easy compared to what I thought it was gonna be.

Joel
And going the opposite way. What's it like when you come back here for visits, for those checkups, or any particular memories it brings back or anybody you think about when you all are here?

Luke
I mean, coming back, for me, I mean, I feel like it's just, you know, day-to-day checkups. I'm still like, right, when I come here, I get back in that mindset of one day at a time, you know, one appointment at a time. I really start thinking about all the doctors, all the staff here that really helped me through this, and who we still talk to today and still keep in touch with.
And then I think about some of the patients, like there was a girl that I took radiation with and she's now passed. I mean, just thinking about it, it's just really hard to take sometimes, but sometimes you look back and you think just how grateful sometimes you are that, you know, if it happened to you, it happens. But there's only one way to get through and you just got to somehow.

Joel
And the beautiful thing is, and too, Luke, I'll tell you this is the perspective from someone who had cancer, is that that stuff never goes away, but you carry on for them, for those you lost. You're doing it beautifully. And it's making me tear up to talk about it. But just thinking about that, like, how is life going for you now? What exciting things are you able to do now that you're on the other side of this?

Luke
Currently, I am about to go into my senior year. And I'm on my football team as a receiver, and going to the Manning Passing Academy, which a bunch of college quarterbacks and like prospects and Archie, Peyton, and Eli, you know.

Joel
Basically every Manning boy.

Luke
Yeah, every Manning in existence are all gonna be like, there, you know, help coach us and teaching us football. I'm just gonna say none of that would have been possible without St. Jude.

Joel
And thinking about it, not just this year, it's exciting to be getting ready to go into senior year, but when you look ahead to your future, what do you see?

Luke
I see me, no matter what, always being grateful to God and St. Jude. I mean, whatever comes my way, I mean, just gonna take it and then get through it and never forget about what they did here in Memphis, Tennessee. And that's really it.

Joel
Beautifully said. And just the last thing for both y'all, how do you think this experience shaped the way that you all feel about each other?

Barry
Let's see if I can get through this without crying. I learned how strong – I really didn't know how strong my son was, and I tried, in the beginning, thinking that I needed to shield him, and I needed to not give him all the information, because at 14-years-old, it was too much. And one of the lessons I learned out of that was I tell everybody the strongest human being I ever met in my life, through an entire career at state police and 51 years of living, is my son.
And he was so much stronger than I ever gave him credit for. And everything they told him here, prognosis, cure rate, what you need to get ready for, this chemo will do this to you, this chemo may do this to you and you may come out of this different, you may come, you know, no matter what they told him, he never wavered. He never quit fighting. So the relationship that he and I had before St. Jude changed significantly once we went through it.
He's my best friend. I'm so incredibly proud of him for not only what he went through, but the man that he's becoming. And like I said, it incredibly strengthened my relationship with him.

Joel
And how about for you, Luke, what do you think of this guy?

Luke
I'm gonna say I think you should still take it easy on me, because I'm, you know, cancer kid. I think taking out the trash can wait for a little bit.
But I think through St. Jude, we just became so much closer. Best buds, as he said, and I don't think that's ever gonna go away. I guess that's something that St. Jude really is one of the good things is it brought me closer to the man who basically lifted me up through all this. It's a little hot in here. But I mean, through all of it, there was no sugarcoating, St. Jude and he wasn't sugarcoating it either. No matter what, it was gonna be okay, and he was still gonna be here.

Joel
Well, I can't think of a better way to end it. You guys are amazing and just the way that you look at each other and share your story and share that is the beauty this world needs. So thank you so much for taking time to share your story, to share your lives, and for being part of this St. Jude family.

Barry
Thank you so much for allowing us to be on this and tell our story. It's something that I promised to St. Jude, that I would do forever, as long as I was breathing, that they allowed me to bring my son home, and I will always, I will forever give back to this place.

Joel
I hope you can feel the joy between Luke and Barry – that’s what I felt sitting with them. What they’ve been through is serious, but maybe that gives them a bigger reason to laugh together. There are some links in the show notes that’ll take you to a video of them trading dad jokes, and some pictures from Luke’s days in treatment.
This podcast is a production of ALSAC, the fundraising and awareness organization for St. Jude Children's Research Hospital. It's produced by Geoffrey Redick and edited by Grace Korzekwa Evans. Music production by Kazimir Boyle. Recorded by Jason Latshaw, Nathan Black, Bobby Mitchell,
Orlando Palaez and Dan Yohey. I'm Joel Alsup, thanks for listening.

Announcer

St. Jude Children’s Research Hospital understands that every patient’s journey through treatment is unique. Listeners who have questions about their situation, diagnosis or treatment options should talk to their physician. These personal stories are not intended to provide medical advice.

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