St. Jude Storied Lives | Episode 5
When Enrique’s daughter Arianna was three, she was diagnosed with a rate type of brain cancer called ATRT, which stands for Atypical Teratoid Rhabdoid Tumor. Doctors gave her 13 months to live. But then the family came to St. Jude. And cutting-edge treatments there helped Arianna live a lot longer
This is “St. Jude Storied Lives.” I'm Joel Alsup. This podcast is a place where you can hear in-depth conversations with the families of St. Jude Children's Research Hospital. They're the kinds of conversations I’m lucky enough to have all the time as part of my job. And sometimes they have a special significance, of honoring the memory of a patient who's passed away. Today I'm talking with Enrique about his daughter, Arianna.
Before we came here, we were looking at 13 months. But after we came here, we got almost five years with Arianna. Arianna wasn’t supposed to make it to be four, but she made it to two weeks shy of eight. And we got those five years to make amazing memories. And Olivia, her younger sister, remembers her clearly.
So those five years changed the rest of Enrique's life. He and his family found a big community of support at St. Jude, and he made it his mission to help other families. And now he works for ALSAC, which is the fundraising and awareness organization for St. Jude. And that's where I work too. I really feel like I'm part of Enrique's family and he's part of mine. We met 13 years ago when he had to travel halfway around the world to get to St. Jude.
Before we came to St. Jude, I was actually in the United States Navy, and we were living in Japan. We had just got there seven months prior, Arianna was diagnosed, in a small city named Atsugi, which is about 45 minutes south of Tokyo.
And before that, before Japan, I lived in Memphis, in Millington, which is about 45 minutes north. And so, we knew about St. Jude, but we didn't know about St. Jude. You know, you just always drive by, and you'd see the fences and the buildings and, you know, commercials are heavy in the Memphis area. And I remember always thinking like, Man, where do they find these poor families? You know, never thinking that we'd be on the other side in those commercials one day.
You know, that's kind of where we were before. You know, I was in the Navy for a few years. I was married to Leticia, my lovely wife, and we had two girls, Arianna and Olivia.
So, yeah, walk us through that. You’re living in Japan, far away from home. Arianna and Olivia are how old at the time when you’re first stationed there?
So, when we moved to Japan, Arianna was about to be three and Olivia had just turned one. You know, we were getting acclimated and just kind of getting used to living in Japan, in a foreign country. We had finally found our stride. My wife had got a job at the daycare and, you know, the day that we found Arianna's brain tumor, Leticia went to work. She took the girls to work, and I went to work. And she called me. She was rushing to the medical office because Arianna was having what we thought at that moment was an allergic reaction. But she was in fact having a seizure that lasted 10 minutes. And I remember running to medical, and I get to medical and Arianna’s still having her seizure.
And now they think she's brain dead because she had had the seizure for so long that the oxygen had just kind of been shut off to her brain. They got us ready to go to the Japanese hospital. They got us a translator and put us in an ambulance. And that's when Arianna came to, right when we got her into the ambulance. And we got to the Japanese hospital, they did a CT scan, an MRI and they found a mass. And we didn't know what kind of cancer or if it was cancer at that time.
But this was like June 28th, and then we spent the 4th of July there. That was the last major holiday we had as a family before our cancer journey officially started. And we flew out July 5th in the morning to San Antonio. The Navy, they looked for the nearest pediatric neurooncologist, or neurosurgeon. They found two. There was one in Hawaii, and there was one in San Antonio. And clearly our family can't drive to Hawaii. So, we chose to go to San Antonio so that, you know, our families can drive and be there if needed. So, we went there, they did her brain surgery and the biopsy took a couple of weeks to come back.
And when the biopsy finally came back, it was July 31st. And it was ATRT, which stands for Atypical Teratoid Rhabdoid Tumor, which is an extremely rare brain tumor. That just happened to be the lottery that we hit, getting a kid with a rare brain tumor.
And I remember the doctor telling us, you know, because he told us over the phone and before we met with him, but he's like, don't go to Google and just come meet with me. But, you know, being that it is the world that we live in today, we went straight to Google and everything that we read was terrible.
And when we met with the doctor, he said that they'd never seen that brain tumor. They’d never treated it there, but that they would like to treat her. And they told us that the best-case scenario was 13 months of life on treatment. But they told us that she was more than likely never going to turn four. So, we couldn't accept that.
We began looking around, and we found St. Jude. And I remember back then we didn't know that St. Jude wasn’t a normal hospital because like I said, we knew where it was because we always drove around it, but we had never been here. And we packed up and started driving to St. Jude, not knowing that there was a referral process and then acceptance process. And we just thought we were going to come through the emergency room.
So, we started driving here, and luckily those doctors did send a referral to St. Jude. And while we were driving from San Antonio to here, we got to Little Rock and Dr. Gajjar called our phone and he's like, Oh, we'll take on Arianna's case. And, you know, you guys come and see me. And we're like, Well, good, because we're an hour and a half away. So, we got here August 2nd of 2009, and that's kind of where our St. Jude story started.
It’s both extremely heartwarming and can be a lot, I work on our video production team. So, I get to meet a lot of the families. I very clearly remember meeting you all not long after you'd gotten here. You know, of course I knew your world had been turned upside down just a month or two before, but you guys, like you just told me, two weeks after you got here, you did your first event. It wasn't long after that you probably spoke to us for the first time. What made you willing to do that so soon into Arianna's treatment?
I don't know. I think we just felt at home right away after we got here. We noticed the care and the difference. So, one of the deciding factors for us to come to St. Jude as well was because, St. Jude wasn't the first hospital we called. We called other hospitals before we came to St. Jude when we were looking for treatment for Arianna.
Being that I was active duty, paying for treatment was never going to be the issue. Her treatment was going to be covered no matter where I took her. But the first question they would ask was what kind of insurance you had? And that never sat right with us because at that point we were trying to save our daughter's life.
Like I didn't care how we were going to pay for it, even if I didn't have the means to pay for it. We were going to figure it out. But we never liked how they would always ask that first. And St. Jude never asked that. I remember we got here August 2nd, 2009. It was a Sunday night, and you know, we had just read about this head of neurooncology, Dr. Gajjar, you know, world renowned doctor, from what we were gathering and reading. And he was here waiting for us at 10:30 at night on a Sunday.
And I mean, that spoke volumes to us. I was an analytics and metrics guy back then. And I remember asking him, what's the percentage of survival you give my daughter? And he said, I don't treat numbers. I treat kids, and I promise to do everything I can to save your daughter's life. And that just made us feel at home immediately.
So, we saw the care. We felt at home, and we saw just how much they would go above and beyond to make Arianna feel comfortable and happy. From the first day we got here, I remember my wife and I used to walk around and joke around because those first couple of weeks, I mean, you're in shock.
It's terrible to know that your kid has cancer. You know, someone you love, that you're responsible for has cancer. And I remember we'd walk around the hallways, and you see, I mean, you see it now when you walk around the hospital, kids are running around playing, smiling, families are fine. It's not what you expect a children's cancer hospital to look like.
And I remember my wife and I used to joke around and say, man, they probably spray Prozac in this ventilation (laughs). But, you know, that's why when they asked if we wanted to share Arianna’s story through fundraising and materials and things like that, I mean, we were always very open to it.
I'll tell you too, what you talked about, that perspective you have when you get here. Mine kind of flipped because when you walk in as a patient, it's kind of like, okay, I'm going to listen, I'm going to do this.
And it was right around the time you all got there. I started especially with you all, I started to identify with the parents because we're around the same age. And I started to see that like, Oh my gosh, what kind of weight is this putting on the parents? But as you described it, you kind of felt like a weight was lifted off when you walk through these doors.
So, the unknown is the hard part. But once you get a protocol and once St. Jude tells you things and these things start happening, it kind of gives you comfort. Quick example is, so when Arianna had her second brain surgery after we got here, well she had some side effects where she forgot how to swallow, like her body wasn't swallowing properly and the food was going into her lungs.
So, she had to be on a feeding tube for a few months. And she had to have a swallow study done. And that doctor thought she was never going to be the same. And I remember how freaked out me and my wife were. When we came back from that appointment to talk to Dr. Gajjar, Dr. Gajjar was like, No, no, no, it's no big deal. You know, she's just swollen. And he's like, three months, we'll retest and she'll be fine. And I remember just thinking like, Dude, this dude's crazy. Like the specialist told us, you know, that this is what's what. But I was like, All right, whatever. So, we do it, three months to the day, Dr. Gajjar schedules another swallow study.
You know, typically when kids have a feeding tube, there's a transition back. To food. Well, Dr. Gajjar was like, when those results came back, and the specialist came to St. Jude for that reading. For that one. We didn't have to go to him. They came here and they consulted with us alongside Dr. Gajjar.
The specialist turned around, looked at us. He's like, She's good. She can go back and eat whatever she wants. And we went straight to Kay Kafe actually, and got Cheetos, strawberries and Oreos. Those were the three things she wanted. I mean, that was within the first six months that we got here, and the fact that Dr. Gajjar was able to like, pinpoint to the day that she'd be fine, I mean, it was crazy, right? And I was just like, dude, like this guy knows what he's talking about.
And I know Dr. Gajjar just, he did everything for her. He was he was such a constant in your life over those years. How did the treatment end up going for Arianna? And I know, you had one expectancy before you got to St. Jude. What were you able to do at St. Jude that was different from everywhere else?
Yeah. So, like I said, the first hospital told us that Arianna would never beat it. The best-case scenario was 13 months of life on treatment. Well, we got to St. Jude and Arianna started treatment and, you know, she went through her protocol. It was 31 radiation treatments and then she had a month break and then four high-dose chemotherapies. And then we went back into scans to see where she was at.
And March 31st of 2010, she was declared cancer free, which was something that we never expected coming here. And Arianna beat it at that point. And unfortunately, you know, she did relapse. It was a year and a half after that, that cancer free diagnosis. But I mean, her beating it that first time was amazing for us.
I know she had some difficult journeys even through that first time. But I know she had a favorite attire that she would wear here. She never treated it like she was feeling bad, I know there were days she felt bad. So can you tell us a little bit about that, how she approached her treatment, what she did at St. Jude.
I think one of the things that we were most concerned about was people staring at a little girl that was bald. Because unfortunately, it does happen right? You see someone that's bald and you don't necessarily stare at them intentionally, but you do look at them and you do catch yourself staring sometimes because you're not staring at them because they're weird or anything like that. You're staring at them because I feel like you're reflecting on if you've known someone that's gone through cancer, but you know, a kid doesn't understand that.
So we used to put Arianna in princess dresses because we always felt like if she was in a princess dress, she'll think in her head that they're not staring at her bald head, but they're admiring her dress.
And I mean, that's exactly how it would go down. I mean, we'd take her to stores and, you know, anywhere. And she was always in the, you know, Cinderella or Belle or whatever dress. And she would always say, Dad, they're staring at my dress. And I’m like, yeah, they love your dress. And, I mean, that's just how she would come to appointments. And you guys gathered a lot of video and pictures of her in princess dresses. So, you know, it's just something that we did to kind of help her get through.
Yeah, it was beautiful to see. I mean, just to see her and her perspective, and just her smile was infectious. And, I know even after that relapse, she still handled things really well. What was life like for you guys when you had that year and a half free, but then coming back to St. Jude, starting treatment yet again?
You know, like I said, the unknown is what's scary, right? At the beginning of the journey, everything's scary until you have a protocol and things start falling into place, the relapse is much different. I think that's terrifying because now you know what's at stake and you've walked the journey once and you know what the percentages are. And now you've met people that have had the same diagnosis and relapsed and maybe passed away.
So, when the relapse came, we thought we only had 6 to 9 months because typically with patients with ATRT at that time, if you relapse, the patient would pass away 6 to 9 months. And this was July. So even Dr. Gajjar was like, you know, I would expect her to pass maybe around, you know, the holiday season.
So, we did like Christmas in July. And, you know, we did all kinds of stuff. We tried to cram a whole lifetime in those six months just because we didn't know what was going to happen. Well, you know, these dates that they kept setting, Arianna was surpassing them. You know, it was like December came and went. She was fine. February came and went. She was fine.
But in that February appointment, Dr. Gajjar said, you know, I have an experimental chemo that we can try. No patient with ATRT’s ever got it that I know of. And we're like, okay, yeah, let's give it a shot. So, we put her on that drug and her tumor shrunk by 90%. I mean, it worked wonderfully.
It wasn't anything that we expected, but we were extremely happy to get. You know, unfortunately, Arianna did pass away in March of 2014, but we got three years almost from that relapse date. We were a couple of months shy of three years from that relapse date, which was completely different than 6 to 9 months. That drug did so well that now it's part of the protocol for how they treat patients with ATRT.
And Arianna was the first one to receive it. So, you know, one of the things that I normally say in these situations is, you know, her legacy lives on because kids today are being treated better because of the way she was treated.
The way I look at it is, that I look at it as the entirety of our St. Jude journey. Before we came here, we were looking at 13 months. But after we came here, we got almost five years with Arianna. Arianna wasn’t supposed to make it to be four, but she made it to two weeks shy of eight. And we had those five years to make amazing memories and Olivia, her younger sister, remembers her clearly, which was one of our biggest things that we wanted to make sure Olivia always remembered Arianna her entire life.
It's amazing. And the thing that just always strikes me is even through our conversations, even when you were in the middle of this and had every right to be as bitter as possible, you all weren't. And you started telling me, even when you were still in the Navy, that you wanted to come back here. What was it that made you want to come back and work for the mission of St. Jude?
So, I think the best way to put it is, I lived in Memphis two years before we ever came to St. Jude. I lived here from 2006 to 2008. And I was actually supposed to be here for three years. So, at that point my detailer – a detailer is who dictates where you go on your next duty station. My detailer was like, Hey, you can opt to stay that third year or you can leave early. And I was like, Dude, I've seen everything I need to see in Memphis, it's time to go. You know, I'm out. And I mean, I couldn't get out of here fast enough. That's the only reason that – I wanted to leave because I just didn't like being in Memphis.
I actually remember driving towards Texas, driving over the Mississippi Arkansas bridge and thinking like, I'm never going to see this place again. And coming back as a patient family, not only did I fall in love with the mission and everything that it did, I mean, I fell in love with Memphis. Because that experience was much different than what we had.
You know, we were welcomed with open arms. We were given everything that we needed to treat our daughter. And I just saw how pure the mission was and lived it, that I wanted to be a part of it, to give back.
And the way I look at it now is, when it's all said and done for me, I want to be able to look back and say that I did everything I could to ensure no other family feels what my family has felt. I don't know if we'll ever get to a place where we’ll cure childhood cancer completely. But I think if it does ever happen, it'll happen here at St. Jude, and I think it'd be special to be a part of that. And I'm not a doctor. I'm not smart enough to be a doctor.
Same here, same here.
But I can be here and help fundraise and help raise awareness and help carry Arianna's memory through everything that we do.
That's beautifully said. I want to take it back a little bit, too. I know after Arianna had passed away, you guys had always talked, and I remember you guys talking about it too, because again, we got to stay close with these people. Because what you all don't know is, before Enrique worked here, we spent hours and hours and weeks and weeks with him, because they were generous enough to let us in to help share this story with the world.
But you guys were talking about wanting to have another baby. And I know Arianna kind of played a role in that with helping pick out the name. So, can you tell us the story of your new young one and the name that he has?
Yeah. So, we have three kids. We have Arianna who's passed on, and then we have Olivia, who is a year and a half behind Arianna. And, you know, we always wanted to have a third. You know, when you have two girls, you know, you always want to try for that boy, right? But my wife actually went to a doctor, and they thought that she couldn't have kids anymore because she had been exposed to too much chemo and radiation. So, we just thought we were never going to have another kid.
And during Arianna's treatment, towards the end, when she was on morphine and a lot of these stronger drugs, I remember Arianna used to – she created imaginary friends. One of them was an imaginary brother. And she used to say that his name was Henry.
I used to always think it was hilarious because when I was growing up, you know, my name’s Enrique. So, when I was growing up and my teachers couldn't say Enrique, they would call me Henry. And it used to drive me nuts. Because I'm like, That's not my name! It’s Enrique! Say my name, you know? And so, I thought it was hilarious that that was the name Arianna landed on because I had never told her that. There was no reason for me to tell her that. So, I always thought it was hilarious that that was what she had landed on.
But yeah, she used to walk around the house and say, I have a little brother and his name's Henry. You know, I have a little brother and his name's Henry. And so, yeah, a few months after Arianna passed away, we were actually looking at adoption. And I mean, we had adoption papers at the house getting ready to send off. Leticia found out she was pregnant, and so it stopped everything.
And, you know, time went on and we found out it was a boy. And then now we started thinking like, What are we going to name this kid, right? So, I always loved Gabriel. Like, I always thought, if we have a boy his name is going to be Gabriel. So, when we started talking about names, I was like, Well we’ll name him Gabriel.
And Leticia was like, There is no way Arianna would allow us to name this kid Gabriel. His name is Henry. Arianna named him. And so, yeah, so his name is Henry, and Arianna's middle name was Rae. And so, Henry is Henry Rae. He carries Arianna's middle name. But yeah, so Arianna named her little brother without being around.
That's beautiful. I love that story so much. I can't ever hear it enough. And just, you know, watching you now, watching you and Leticia, just the absolute joy you take in being parents, it makes me so happy to see. What is life like for you guys on a daily basis? I know Henry's a bundle of energy. Livie’s got tons of stuff going on. What is life like for you guys now?
It's busy, you know, just like any parent. We have a teenage daughter. She's kind of on autopilot on her own. She gets great grades. She's, you know, National Honor Society. She plays competitive sports. She's a great kid all around. And Henry's great, but he's a lot more entertaining, you know? He keeps us busy and on our toes.
And, you know, we just try and live every day to the fullest, and we try and maximize everything that we do because you don't know what's around the corner or what tomorrow may bring. That's one thing that I think we learned through Arianna's treatment. Not saying that we didn't live that way before, but I think we learned how to appreciate the smaller things that I think a lot of people overlook in their day-to-day life.
What would you want to say to those parents who are getting the sledgehammer for the first time, hearing that their child has cancer? What would you want to tell them with your voice of experience?
I think the most important thing, you know, because not everyone comes to St. Jude, right? I think the most important thing when you're in a situation like that is, you have to trust your doctors.
If you can't trust your doctors, then that's not the right doctor that you need to be at. You need to trust everything that they're telling you and how they're treating your child. If the trust isn't there, then you'll never find comfort before or after treatment.
Thank you, Enrique, for your time. Thank you for not only sharing your story when you were going through it, but for coming back and working. That to me speaks volumes about the spirit of St. Jude and what is being done here. That you come back. So thank you so much for taking time to do this.
Thank you guys for having me and thank you for inviting me. Like I said, anytime that I can be a part of anything to share Arianna’s story and honor her legacy and memory, you can count me in.
So, as you heard, Enrique has had to walk a difficult path. But you heard him talk about the five years of experiences and memories that he got to have with his daughter Arianna once they came to St. Jude. It was long enough to leave a legacy that touches her younger brother. Arianna got that extra time because of the advances in treatment supported by cutting edge research.
And that’s one of the best parts about St. Jude is that we have amazing doctors and scientists, who work long hours searching for breakthroughs and take the time to meet the patients who are walking through the doors for the very first time. And you can help. Give to St. Jude 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 Andres Garcia and Nathan Black. It's produced by Geoffrey Redick. It's edited by Grace Korzekwa Evans. The music production is by Kazimir Boyle, and Louis Graham is the executive producer. I'm Joel Alsup. Thanks for listening and join us next time.