Lighting up the room, even in hardship

Transcript:

Joel
Hey there, I’m Joel Alsup and welcome to St. Jude Storied Lives.
This is a place where the patients and families of St. Jude Children’s Research Hospital tell their own stories. I’ve met hundreds of St. Jude patients over the years, both from when I was a patient myself and from the 20-plus years I’ve spent working for the fundraising and awareness organization for St. Jude.
I love watching these kids get older, even though it means I’m getting older myself! Today I want you to meet someone I’ve known just about his whole life.
Javon was two years old when he was first diagnosed with ALL – acute lymphoblastic leukemia. Now, the treatment for ALL lasts three years. And unfortunately, Javon had to go through that treatment three times. That meant that he spent most of his early years at St. Jude.

Javon
I thought this was like normal for a little child to go through. So, I really wasn't paying any mind to it because I was just used to it. That's kind of weird saying from a child perspective like, oh, this is normal. But during that time, I was pretending, like I'm a kid. I'm a regular kid, so I'm literally just hanging out with my friends, my best friend at the time, Devin, and have, of course, have a lot of other friends. We were just outside playing, even though we was hooked up to our medicine bags and all that good stuff. So, we were just having fun like a regular kid.

Joel
He really was a happy kid, despite the circumstances. By the time he was five, Javon was nearing the end of his first treatment. His family was ready to celebrate. But all at once they learned he wasn’t done after all. The ALL had come back.

Javon
Before the big party that we do, like no more chemo, we always have to do a bone marrow aspirate. So, for those who don't know, a bone marrow aspirate is when they put a needle in your spine. I was asleep and, of course, like, literally like 30 minutes before my no more chemo party, they was like, nope, nope, nope. We gotta do something else. We gotta do something else. And I remember the vibe just changed. Like we were just happy one moment, and then it was so fast. Like, oh my God, we need to do this right now, right now, right now.

Joel
So Javon returned to active treatment… and eventually he completed that and even got a chance to do normal-kid things for a while. But then there was more bad news.

Javon
I did relapse again in 2010. So, at this time, I had broken my leg because I went skating, because I was trying to impress this one person. I'm not going to say who. But yeah, at the time, I had broken my leg, and I was in fifth grade, and I was going to get my checkup and the doctor noticed something in my blood was like, that should not be in there.
So, I relapsed again. So, I'm like, are you freaking serious? Like, are you kidding me? I gotta go through this all over again? But this time I had a bone marrow transplant. So with that, there are a lot, a lot, a lot of tests.

Joel
That means a lot of time in isolation. How did you handle that?

Javon
Okay. Isolation. Okay. The first couple of weeks, I'm like, okay, this is nice. I got my Xbox and my Wii, so it's nice. For those who don't know, for a bone marrow transplant, you have to be in the hospital for 100 days, which can either make you or break you. However, since I was used to being in a hospital, it was like a walk in the playground or whatnot.
So, the hundred days – okay, day 50 I was doing good. And then during the bone marrow transplant, they have to wipe your immune system out, which means you have no appetite. So, at day 50 everybody expected me to, like, oh, Javon should be stopped eating – naw sweetie, I was still eating.
Okay, my order at the time, if I can still remember, it was two fried catfish, fries and ranch. And a milk or some type of Gatorade. I had a weird appetite. So, I used to have like fish plates stacked on, stacked on, stacked in my room. And on day 75, that's when it hit me like, oh, I don't want to eat nothing. And everybody was shocked.

Joel
Tell us about that memory issue you had in the middle of your treatment.

Javon
Okay, so I lost my memory during my bone marrow transplant. So there are, some people have side effects from the bone marrow transplant. Like some people lose memory. Some people can't walk. Some people can't talk. Day one of the cell transfusion, of course we had a procedure or whatnot. I was doing well, and in the second round of the cell transfusion, I was asleep for like a week or two.
My mom said I was in a coma. And then I woke up, and as far as I'm like, where am I? Because when I woke up, my mom was happy. She was crying. She was like, oh my God, my baby. At first I'm looking at her up and down like, who is this woman in my room? Why am I here?
And of course I'm playing it off like, okay yeah, yeah, but get out of my face, I don't know you. And then, she called the nurse and the doctors. And the doctors came in, the nurse came in and they was like, hi, your name is Javon. And I'm like, my name is not Javon. And I looked at my wristband and I’m like, oh, my name is Javon.
And I went back to sleep. And I went back to sleep for a couple of days. I woke up, my mama was crying and she was like, do you remember me? I'm like, yeah, you're my mama. Why would I forget you?
That was very scary and also very confusing too.

Joel
So what Javon is talking about is actually something that many bone marrow transplant patients go through. That whole process is physically and mentally exhausting. And their bodies are using a lot of energy. First, to heal from the chemotherapy that’s used beforehand, and second to build a new blood system.
And it can affect the patient’s level of consciousness and their short-term memory. From a medical perspective, it’s different than being in a coma. But not remembering much from the hardest days of a transplant is a common experience.
Javon was a tough kid though, and hung in there, eventually he was in full remission – cancer free.

Javon
Cancer free. Hallelujah.

Joel
That's amazing. So also too, you were not the only, St. Jude patient in your family. Long before you, your mom was a patient. What was her diagnosis as well?

Javon
Yes, her diagnosis was ALL as well.

Joel
So same thing, went through the same kind of treatment. It was a little bit different. Can you tell me a little bit about that?

Javon
Okay, so during her treatments, in the early or middle ‘80s. So, she was part of the original hospital, like the star.

Joel
The star-shaped building that opened in 1962.

Javon
The star-shaped building. So, they didn't have all the technologies and stuff. So, my mom used to tell me a lot of stories about, like, how she was like, she don’t know how she went through it because a bone marrow aspirate, which is regular for – persons with blood type cancer, you have to get that. However, they didn't put her to sleep. She was doing this awake. So, her treatment and her experience are very different from mine.

Joel
But it's still something you had in common. Did you realize it as you were going through treatment, that this was something your mom had to do as well?

Javon
At the time, I didn't know. So, when we used to go to tell our story, I'm like, are you serious, mama? You didn't tell me. I learned that during one of the seminars that I used to speak at. So I'm like, wow.

Joel
The story doesn't end. There's unfortunately another part to it. So, your mom is a St. Jude patient. You're a St. Jude patient. In the middle of your treatment, you find out something about your sister. What was that?

Javon
All right, so the year is 2008, my baby sister is two. Her name is Jakayla. And she was diagnosed with ALL, the same as me and my mother.

Joel
That is a lot for one family to experience. And you’d be right if you thought they were asking, why is this happening? Well, there was an answer they learned through genomic testing. Javon’s family found out they all have a genetic mutation called a PAX5 mutation. We put a link in the show notes to tell you more about that… but it’s known to make it more likely for someone to get a specific type of A-L-L – and it’s associated with relapses too.
Now how did you feel when you hear your sister has the same thing? Is going to have to go undergo the same stuff that you are.
Javon
So, at this time I'm still like a new big brother because she was two. I was like, are you freaking serious? My sister has to go through the same thing I go through? Like it's not a good experience. And plus, she literally grew up at St. Jude, even though she was not a patient. So, everybody knew us. And everybody was shocked.

Joel
Yeah. And what did you think as a big brother, did you want to be protective of her? Did you give her advice as she was going through her treatment? What did you do?

Javon
See, I was already protective because this is my only sister. At the time, I didn't know what to say. I'm like, listen here. I'm new to being a big brother. I'm new to my sister having cancer, so I'm like, everything was up in the air, so I didn't know.

Joel
Yeah. And obviously you got your family right there with you. You have your St. Jude family. How did you feel when you kind of go back into the real world? Did you feel distance from other kids? What went through your mind when you were doing regular things again, finally?

Javon
At first it was very hard because at St. Jude I'm used to everybody. I'm used to my friends, and I’m used to the doctors. I called them my aunties and uncles. It was just like a family, even though I'm getting medicine and stuff. But still, that was like my family.
Outside, I'm like, I don't know what to do. So outside of St. Jude, it was very hard for me because kids are mean, okay? These kids are mean, especially where I'm from. So, it was a very hard experience.

Joel
Yeah. You did school at St. Jude, too didn’t you?

Javon
Yes. I also did school at St. Jude.

Joel
You thrived academically, right?

Javon
Yes, I thrived. So, my first time actually going through like the whole grade would have to be sixth grade. I actually had like a fresh start, like, nobody knew about my cancer story. It was like a fresh new start. So, I made some friends and also thrived academically wise.
And I also was in marching band and, of course, outside school I was in choir. So, I did vocals and all that good stuff. So, I was very busy. And also, I was in business organizations like FBLA (Future Business Leaders of America), honor societies. I did a lot of stuff.

Joel
So you were a much better student than I was.

Javon
Yes, yes.

Joel
You decided you wanted to go on to college. How was college?

Javon
So, I had a lot of choices to go to school. So, I went to University of Memphis, and that was the school that offered me the most money of scholarships. So, I went to University of Memphis. Ninth grade year – not ninth grade year. I’m sorry. (laughs) Freshman year. Freshman year was amazing. Like I was in marching band. I got my first college honor society – because I was in, as time progressed, I was in like 20-plus honor societies.
And then I played for the Mighty Sound of the South, University of Memphis marching band, whoop whoop! Go Tigers! And, I had an amazing time. And then St. Jude did a present story. They took a picture of me in marching band. They saw me play, and it was so weird because everybody was like, who are these photographers here for? I'm like, I’m coming through the band room like, hey they here for me. So, get outta my way. You're blocking my light (laughs). So, I had an amazing time.

Joel
That's awesome. So, in marching band, what instrument did you play?

Javon
I played the trombone. So, my trombone section, class of 2023 and class of ‘19. We was the best class that came through the University of Memphis, and we were the biggest band at the time. We was huge.

Joel
What did it mean? What did music mean to you as you were going through school?

Javon
Music was my like gateway from reality. Because with music – I don’t know how to explain it. When you're playing the music, it's like you are the music, you are the art.

Joel
And I remember you got to be featured at like the biggest Memphis football game ever. Can you tell me a little bit about that?

Javon
Oh, College GameDay! Wow! That required us to be downtown at what, 3 a.m. or 4 a.m.?

Joel
Yeah, it’s an early start because the show starts at 8 a.m.

Javon
Yeah, I was down there early, so I didn't get no sleep, no sleep whatsoever. I never get any sleep for marching.

Joel
And it was super warm that day too. (laughs)

Javon
Super warm?! It was freezing! (laughs) So with that, College GameDay, it was University of Memphis versus who?

Joel
SMU.

Javon
SMU. Smoooo! That's what people in the stands called, smoooo! So we was there early, bright early. And I’ll never forget it. Me and my homegirl Brooklyn, that was my girl, during marching band season, so we up and I never forget it. First thing, I had called, hey mom I'm up early. And my mom was like, it's early in the morning, why are you calling me? And I was like, hey mom! I'm very excited. I'm high off coffee and all that good stuff. So, I'm like, hey, mom, I'm going downtown for the College GameDay. All right. Bye.
Then I got my phone. And I’ll never forget it, I posted on Facebook. I'm like, hey everybody, please watch the College GameDay. I'm going to be featured on it telling my story and also playing with the Mighty Sound of the South and it's College GameDay. So go Tigers! So, we get on the bus, everybody was like, oh, we up this early. And we are changing on the bus like getting in our whole full uniform, which was crazy because we had a coach bus and it's very hard to change in it.
So, everybody was doing backflips, cartwheels trying to get their pants and stuff on like it was crazy. Get off the bus. Freezing cold. And for those who don't know, marching band we have like brass instruments. So, if it's cold, it's cold, so we can't play. We have to adjust our tuners and all that stuff.
And then we get downtown, Beale Street. Everybody's cheering. I'm like, what time did these folks get here? Because it was early. Like it was dark. Then as time progressed, the game started going. And then all I remember is they say, here Javon hold this selfie stick. I'm like, what am I gonna do with my instrument? She was like, I'll take it, I'll take it.
So, we get on the stage. I'm screaming, cheering, yay! And I'm waving. And then I got a call from my auntie like, I saw you on TV, and it was amazing. It was amazing, I loved it. If I could relive it, I would.

Joel
My wife and I were in the big crowd behind you, and we hadn't seen you for years. And then we see you pop up on screen. It made our hearts smile. It was so cool to see you that day.
As you're in school, you know, you're fully formed, young man, now. How do you feel like all the time that you spent at St. Jude shaped the person that you are now and when you were in college?

Javon
Oh, that’s a hard question. When you type in my name, it’s St. Jude right beside it. So, I don't know how to answer that question. I mean, with St. Jude, it made me very determined and eager. And I like to learn new things because at first, I was going to be a nurse. Because I literally was around nurses like, I know how to start a I.V. or all that good stuff, but no, no, no. I dropped that dream real quick when I saw the requirements for that degree.
So yes, with St. Jude I became very determined. I became very eager. I became very outspoken. Clearly, I'm on a podcast. I don't know, I don't even know how to answer that question. It's very broad. I don't know how to answer that. Let's come back to it.

Joel
Absolutely, and thinking about it from your family's perspective, too. Do you feel like this was something, even though it was a terrible thing all three of you had to go through, did it bring you all closer?

Javon
I feel like it made us stronger. Like, it made us very strong. Even though we were patients at different decades and times, it makes us look back like, dang, we really went through that. Because there have been times I asked my mom, like mom at the time, how did we do it? Like, how?
And she was like, first thing my mama would say, it ain’t nothing but God. Because we'd been through a lot, a lot.

Joel
For sure. Thinking about that, do you ever get to bump into St. Jude patients now? Do you get to talk to them and share your story in any capacity?

Javon
I do see some former patients, and it brings a tear to my eye. And also, I love seeing them thrive and grow because we literally went through the same thing and the outcome was different from one of us. So, I'd be like, oh my God, you're so tall. Oh my God. So, I really be cheering like a parent. I'm like, oh my God. Especially like the little babies. I literally saw them grow up. I'm like you just this tall now. And I'm crying! Get out of my face! I love you but get out of my face! (laughs)

Joel
Well now I know how I feel sitting across from you. (laughs) That’s the exact feeling I have. It is nothing but pride too, just to see you thriving now. It just means the world. So, thank you so much for taking time to talk to us and to just share your story of the amazing things that you've overcome and the amazing person that you are.

Javon
Oh, if y'all could see me right now, I'm very blushing. So, stop! (laughs) But thank you.

Joel
Well, like you heard when he was talking about his appearance on College GameDay, Javon loves the camera. And you can see for yourself at the link in the episode description. It takes you to a series of cooking videos. He’ll show you how to make that catfish he loved so much during treatment.
For Javon, that treatment took a long time. His mom and sister had similar stories – each of them had a recurrence of ALL. Thankfully, all three of them are doing well now. St. Jude never gave up on them. Those years of care – at no cost to their family – were only possible because people like you made donations to the cause. Families never receive a bill from St. Jude for treatment, travel, housing or food. Thank you for your support.
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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