Mariangeles

Transcript:

Joel 

Hey there, I’m Joel Alsup and this is St. Jude Storied Lives. I get to talk to all kinds of people for this podcast. And that’s because patients at St. Jude Children’s Research Hospital come from all over the world.

I grew up in Chattanooga, and when I was a patient and throughout my career at ALSAC, I’ve met people from Poland, Mexico, Chile, England, Bolivia, Nigeria – and those are just to name a few.

Today I want you to meet Mariangeles. She was diagnosed with cancer in Venezuela. This was over 20 years ago, and patients back then faced a very different climate than they did in the United States.

Mariangeles

For us to hear you have cancer, they just tell us, go home and try to be to be as happy as you can until the cancer takes over you. And it’s sad because not everybody gets the blessings that they should.

Joel

Mariangeles is part of a big family. She has 11 brothers and four sisters. Her Dad was a doctor, and her Mom worked for the Venezuelan government in organizational psychology. And when she was little, Maria, as her friends and family call her, was always busy.

Mariangeles

I was very involved in extracurricular activities. You know, if there was dance pageants, you name it, I was involved. My mom always wanted us to be doing something after school. So whether it was playing tennis. I was a model – it’s part of our Venezuelan culture. And then I was also involved in a lot of church things.

Joel

So you’re growing up, happy, busy, full life in Venezuela. Then around the time you hit your teenage years, you start noticing maybe something's wrong. What were those first signs that something might be up?

Mariangeles

I started to get really, really tired. I would go home and just want to take these long naps and then I will wake up, barely eat dinner, and then I will go back to sleep like I didn't take nap. And my dad was like, okay, maybe you're becoming a little bit anemic. You know something is not quite right.

Joel

Did you start going to hospital immediately for checkups or what went after that?

Mariangeles

So, I will tell you a funny story. You know, my dad was a physician, right? So, you will think that they would take me to the hospital the first thing. Well, that's not how it happened. So, it wasn't until – it was a Sunday and we went grocery shopping and me and my older brother, we were just being brother and sister and we were arguing and he throws something at me and then he hit me.

And you would have thought that I went into a boxing ring. I mean, my bruise got to be so big on my leg. It was all colors. It was purple, it was yellow. And my dad was like, okay, something is not right. That's when my fever started to get really, really high. And my mom was like, We're going to the doctor. My dad's clinic. And the oncologist then told my parents that I had leukemia.

Joel

Did the doctor or your parents tell you that you had cancer. What went through your mind when you hear that?

Mariangeles

Well, they told me I had a bug, a stomach bug. And they were like, we have to transfer you to the public hospital. And I was like, Why are we going to the public hospital? Like, what's going on? And my mom was like, Well, the doctor that needs to see you is at that hospital.

So, my fever was so high that it was kind of like a dream. And I woke up and I was sharing the room with five other kids.

Joel

Oh, my gosh. Yeah.

Mariangeles

And it was a teenager, 16-year-old bald-headed kid, that he goes, Hey, what are you here for? And I was like, Oh, I have a stomach bug. He goes, A stomach bug? If you're in this room, you either have leukemia, a tumor, or you're about to die. And I was like, What did you just say? So that's how I found out.

So, yeah, what went through my mind was, I'm going to die. I remember my dad walking in the room looking up at him and saying, Dad, I need you to tell me the truth. And I've never seen my dad cry, like going to his knees and saying, We're going to do everything, everything we can. But they just told us that you have a week left. Your mom is doing everything to get you, we’re going to get you to this place in Memphis, Tennessee. And I was like, Where's Memphis, Tennessee? And he’s like, it’s where Elvis is from. And I’m like, Who's Elvis?   He's like, you know, Elvis. And I'm like, no, I don't know Elvis. And I was like, my question to him was like, am I going to die?

And it was just one of those moments of like, you know, my mom and my dad were so strong on faith. And on, You're not going to die. But in my mind when I said goodbye to my family and my friends, I said goodbye. I didn't think I was coming back.

Joel

And so this is obviously because the cancer is so far advanced. They're getting you to St. Jude. What went through your mind as you know that you're going to be leaving your country, leaving family and friends? What are you thinking then?

Mariangeles

I was very scared. You know, I didn't speak English. I was like, Oh gosh, I only know how to say Disneyworld, french fries, popcorn, And that's all I need. And I didn't know what kind of hospital I was going to.

Joel

If you didn't know who Elvis was, I can't imagine you would know what the interior of St. Jude was like. So, walk us through that. You get here to St. Jude. What was it like arriving here that first day?

Mariangeles

So we arrive and I remember, you know, we're Catholic, so I remember looking at the statue of St. Jude. My mom was like, He's receiving us. It's going to work. We're going to walk out of here with you again. And we walked in and a whole team of people were, like, waiting for us. But one lady – and it’s special, Ms. Rosa – the first thing that she said, she was like, Bienvenida. And I was like, Oh, my gosh, you speak our language. And they had a whole team. My doctor, he’s from Brazil. From that moment he called me his princess. 

Joel

And as so many of our journeys often do, the chemotherapy and the treatment didn't go exactly as planned, did it? 

Mariangeles

No, they started the chemotherapy and that's when – I like to describe it as like, that's when I left myself and the world for a little bit. And I came back a month later to be myself. A fungal infection took me to a very, very bad shape where they had to induce me into a coma.

That coma took me for seven days, and then on the fourth day, the doctors, they thought that the fungal infection had reached my brain. And they did try a trial drug. And when they did wean me off for a few days, I didn't respond. But I did respond to it on day seven and I woke up.

Joel

Do you have any vivid thoughts from that time at all?

Mariangeles

I do, actually. I mean, I did see myself in one of the most crazy things, and my mom was like, there is no way. There is no way that you can know that. I mean, those doors, like I remember the “fwwuh fwwuh” of the opening doors at the ICU. And a Scooby Doo balloon that the nurses had brought me that was sitting in the corner behind me. And my mom was like, it was behind you, but like you were not. And I was like, yeah, I was standing in front of it. 

Joel

Wow. You get out of that, work your way back to chemotherapy. How does the rest of your treatment go while you're at St. Jude?

Mariangeles

Oh, man. You would think that that was the worst, right? So, you go through that. I wake up. I came in October 1st. Halloween's one of the most fun times at St Jude. I get out of ICU October 30th, right before Halloween. Oh, you cannot go to the party because you have no immune system.

Joel

Yeah. You gotta stay away from germs.

Mariangeles

It's like, Sorry you can look at the party from the nice pretty glass. I'm like, oh great. But you get all the gifts. I'm like, okay, I'll take that. You know, you do that. And then they bring me into the room and I see the translator coming in the room and I was like, okay, So when do I get to go home? I'm good, right? So my doctor comes in, He's like, You have no trace of cancer. Your cancer is gone.

Joel

Wow.

Mariangeles

And I was like, Let's go. Let's go home. I'm going to go home. But we have to continue treatment. And I was like, Oh, wow, But why? And he goes, Your're second chemo is the tough one. And I was like, Oh, the first one was not the tough one? Your second chemo, it's going to be a little bit more. We're going to wipe your counts again. Then we're going to see how your body is going to react. But you're going to lose all of your hair.

I looked at my mom. I was 13 years old, and I was like, I'm good. I'm good. I don't want to. You said that you had the cancer under control. But I don't want to look like an alien. I don't want to lose my hair. That was my identity. My hair was my identity.

But then it's crazy because St. Jude makes it so unique and it’s such a bubble. Then the people that have hair, they're the weird ones, you know? They're like, Oh, they must have just arrived. Like, what's Why are you here for? You know, it was hard.

Joel

I understand that. So, you go through the rest of your treatment. Of course, all the fun side effects of chemo, getting sick, losing hair. When did you finish your treatment at St. Jude?

Mariangeles

Six months. So one of the promises my doctor was able to keep because you know how they tell you, you know, it's like a promise that doesn't have an expiration. I'm going to try my best. But I told him I was like, I want you to promise the best that you can that you're going to get me out of here before my 14th birthday.

So April 13th, I went in October 1st, April 13th, six months into chemotherapy, he did everything that he could. All my counts were good. Six months to the dot. I was walking out of the doors of St. Jude and I got back home to Venezuela April 18th, the day before my birthday.  

Joel

Awesome. What was it like being back home in Venezuela?

Mariangeles

You know, I thought it was going to be the happiest day of my life. You know, I had all of the foods, all of the cheese that I did not have here for six months. I got sick to my stomach that night because I ate everything that I could when I got back.

But then trying to go back to that society, it was hard. You know, I was 80, almost 90 pounds still, because of the treatment. My hair was still growing. I looked sick still, even though I was not going through the chemo anymore. It was very hard. I was bullied at school a little bit because I did not look like the other girls.

I wanted to come back to St. Jude. I was like looking for – I have a rash, or I think I need to go back Dad. When is the three months? When do we have to go back? I think that's why my mom made the decision for us to move permanently to Memphis because it was my bubble.

Joel

So that meant you ended up back in the US and in Memphis for those high school years. Eventually college. What was it as you went through high school that you decided you wanted to pursue?

Mariangeles

I did. So, I came back for my 10th grade. I went to Memphis Catholic High School, went to the University of Memphis. I met so many people, loved every bit of it. My sorority sisters, I’m a Sigma Kappa, joined a sorority. I was living life, full of life.

And I did an internship for what now is Raymond James and Associates. Worked in the financial world for many, many years. And I'll be honest with you, Joel, I did remove myself a little bit because I didn't want to be identified as “the cancer kid.”

Joel

I completely understand that.

Mariangeles

I did not tell people why I was in Memphis. I created a career of my own, a persona that I was very, very successful. And it wasn't until six years ago where I was at a gala for St. Jude. I always supported it. I lost a lot of friends, so I always supported on their behalf. And the opportunity came and they offered me a job. And you know, it took me a while just to close that circle, but it was the best decision that I ever made.

Joel

That's amazing. And another great thing came here in Memphis too. I don't know if this was pre the gala after the gala, but you met your husband.

Mariangeles

I did. I met my husband playing tennis. My coach, actually was like, you need to meet this guy. I was like, Do I? And he's like, he's completely opposite you. You know, you talk, he doesn't. I was like, why do I need to meet him then? And, you know, I'm happily married with him now, but yes, I met him, he’s born and raised from Memphis. So another thing that thanks to St. Jude I have, because if it wouldn’t have been for  moving to Memphis, I would have never met him.

Joel

Yeah. And did you, when you were initially going out with him, did you tell him about your cancer journey or was it something you hesitated and waited to tell him about?

Mariangeles

I waited a little bit. He knew that I had come to Memphis from Venezuela for “a thing.” He just didn’t know what “the thing” was. He thought my mom had been transferred from work. And it was interesting because, as we developed, one of my friends told him, Oh my gosh, yeah, Maria was a cancer patient. And he goes like, Oh, she was? And I was like, Why did you tell him?

Joel

It's tough. You want to be the person to break that news, you know?

Mariangeles

And he was like, why didn't you tell me? And I was like, Because I don't want you to feel sorry. And he was like, I would never feel sorry. That's not how it goes. And so, you know, from then I told him, but it wasn't until about four years ago that I was giving a tour to one of my Heroes that came for the marathon. And it was way before COVID when we were able to give the hospital tours. And I was like, Babe, you really want to hear my story? Come on. And the whole time I'm giving the tour and he's crying and I'm like, See, this is why I didn’t want you to come. And my Hero goes, This was the best tour ever, because I just could see this is the first time that he's actually heard this story.

Joel

Well, that's awesome you had someone so accepting in your life right away. And other family, too. Is your mom still in the United States? Do you guys still stay close?

Mariangeles

Yes, she's in Houston, but she comes to Memphis. I mean, she moved to Houston about eight years ago, but she comes to Memphis all the time. And I go to Houston, all the time.

Joel

And what does she mean to you, knowing she sat by your side in those most difficult times?

Mariangeles

My mom is my rock. You know, my mom and my dad, they were already divorced when I went through treatment. So my dad had to go back to be with his family. And my mom – I always say, and I will always say it, my mom is the reason why I'm still here, because there were days that I was ready to give up.

And she fought that fight for me. You know, I wanted to fight. And I couldn't. And she took the armor and fought for me those days. So she means the world to me. Of course, as Latinas, you know, we butt heads all the time. But that is my mom. And, you know, one of the things that she represents to me is, it's the power of being strong.

I mean, my mom is a strong woman. I mean, the cancer better be scared of her because she was like, you ain't taking her. I will fight you. And she did. She did. She never, never let the word cancer scare her. 

Joel

That's so perfectly put, because I'm married to a fellow St. Jude survivor. And we talk about that too, of like you get older and you realize how strong your parents were when you went through this. And it truly is an amazing thing to see. So, you know, obviously now working for the fundraising an awareness organization for St. Jude, you still get to see a lot of the hospital, you get to see a lot of St. Jude.

What does it mean to you or what do you think about whenever you see kids who are in treatment at St. Jude right now?

Mariangeles

Man it's crazy because to me it's like, it never stops. You know, a lot of the time working here, we say it, “We won't stop, you know, St. Jude doesn’t stop.” But it's the truth. I mean, those kids come in every day through the door. So now that I see them and now I'm in the fighting, you know, making sure that we get money in, it's like I have to work harder. You know, I have to work harder. But in my mind, it's like, man, like they're here already. They're getting the best treatment. In my mind, I'm always like, tomorrow, are the ones that are going to hear, You have cancer. Those are the ones that I need to be proactively working even harder for. And the ones around the world that we're now helping.

Joel

Yeah, that’s what I was going to ask you about next. What does it mean to you, especially when you see kids who are coming from other countries to be treated here?

Mariangeles

Oh, it makes my heart smile. You know, for us to hear you have cancer, they just tell us, go home and try to be as happy as you can until the cancer takes over you. And it’s sad because not everybody gets the blessings that they should. I don't know how else to put it.

I will tell you that when I went back home, I tried to find that kid that told me, Oh if you're here, you know. He was the one that told me that I had leukemia, in a way. And come to find out that he died a few months after because he didn’t have the rounds of chemo that he needed.

So for me, it was very tough to hear that. But to know that St. Jude now, it's working to send not just the protocol but the chemotherapy. You  have no idea how much that means for somebody that was sitting in a bed with somebody that died because they didn't have that chemotherapy. So it means the world. It means the world. 

Joel

And so, it's been a little over 20 years now since you have been declared cancer free. When you think back on what you've gotten to do in these last couple of decades, what does all that mean to you? And that St. Jude played such a role in that.

Mariangeles

It’s like, you're given a chance. You're given an opportunity to be somebody to go through milestones. I mean, 23 years. It will be 23 years. And I'm just so thankful, so thankful. But I'm definitely more thankful for those people that 23 years ago where we're giving so I was able to get that chance.

Joel

And so we looked back there, thinking ahead over the next 20 years. What do you envision life being like for you?

Mariangeles

I just hope there’s no more extra doors that we have to go through with side effects. A.K.A what's next? Right? But I just, you know, just full of life. Enjoy my husband, hopefully be a mom, get the privilege to hold a baby in my hands and call it mine and be selected to be their mom and you know just do good and keep working hard because we can’t stop. There are kids across the street that need our help. However I can help.

Joel

You're providing tremendous help. And thank you. This is helping people, too. So, thank you so much, Mariangeles, for being with us today.

Mariangeles

Thank you so much, Joel. And thank you. You know, everybody on the team for counting me for this. And thank you for everybody listening. And I cannot thank you guys enough.

Joel

So when Mariangeles came to St. Jude, she was stepping into the unknown, in a country far away. But not everyone can make that trip. Reports say that only 29 percent of low to middle income countries have access to quality cancer medications for children.

St. Jude is changing that … through the Global Platform for Access to Childhood Cancer Medications.

St. Jude estimates this platform will reach 120-thousand children by 2027. You can read more about this $200 million dollar commitment – and show your support – online at stjude.org or click the link in the episode description.

This podcast is a production of ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. It’s recorded by Jason Latshaw and Andres Garcia. Produced by Geoffrey Redick. Edited by Grace Korzekwa Evans. Music production by Kazimir Boyle. Louis Graham is the Executive Producer.

I’m Joel Alsup, thanks for listening and join us next time.

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