St. Jude Storied Lives | Episode 1
When Emily was 16, she was an active kid, filling her days with extracurricular activities and time with friends. But then she became lethargic. She got painful headaches. Eventually, she was diagnosed with leukemia.
She says that moment of diagnosis marked the end of her childhood innocence. But when she arrived at St. Jude, she was overcome with hope even though she was critically ill. And doctors there offered her an accelerated treatment protocol that only lasted nine months.
Now in her early 20’s, Emily says she’s still reclaiming parts of who she was before cancer. She’s rediscovering her love of the outdoors and leaning on her love of music, which helped get her through the most difficult parts of treatment.
I'm Joel Alsup and this is “St. Jude Storied Lives.” I'm lucky enough that I get to make videos about the patients and families of St. Jude Children's Research Hospital. I’ve spent hours talking to these folks, and the conversations can be sad sometimes. But you know what, a lot of times they can actually be happy and joyful. I understand how that is because I was a St. Jude patient myself. I had osteosarcoma back in the late 1980’s. That’s a type of bone cancer. What I've learned from all these families in my time here at St. Jude is it's not an ending place, it's really just a beginning. Here, I’ve formed lifelong friendships, second and third families, and a community of support. Those are the types of experiences you’ll hear about in this podcast. It's a chance for you to find out what happens to someone when treatment is over and the next part of life begins.
I get to live a life that, not only 16-year-old Emily would have been proud of as a cancer patient, but also like 15-year-old Emily before cancer was ever even a part of my story.
I'm really excited to introduce you all to my friend Emily.
I can actually remember her just a few days after she came through the doors of St. Jude for the first time.
She was really sick.
She was a junior in high school, and she was feeling tired all the time.
And she had these bruises that just wouldn't go away.
And this was a girl who was used to being really active, so she knew something was wrong.
In the days leading up to my diagnosis, my symptoms got worse. I was getting these headaches that kind of felt like my head was exploding. I went shopping for prom dresses on a Sunday and had to go lay down in the car because my stomach was hurting so bad. I had spots in my vision, and I told my mom, I really did feel like my head was going to explode.
Then a couple of days later, I was diagnosed with leukemia on a Thursday, like at 1 o’clock in the morning. The doctors came in because it was such an urgent case. As soon as they found out what it was, they wanted to kind of get things rolling to start me on treatment and try to save my life.
And I remember vividly you telling me about coming through those doors for the first time. What were your thoughts? What was going through your head as you came to St Jude?
I wasn't able to drive here. I’m from Louisiana, so it only would have been a five hour drive. But my doctor didn't want me to drive because I was so critically ill that even just the bumps in the road could have caused me to have internal bleeding and things. So when I got here, they got me right up to a room.
And I remember sitting down on the bed. And the beds at St. Jude, they automatically adjust to your pressure points. And I sat down, and it was the most comfortable bed I'd ever been in.
And the nurses brought over a menu and they were like, When's the last time you ate hon? And I was like, That's really sweet, but I don't think my family can afford all of this food and stuff.
And I was like, I, I don't know, I was a kid. And they were just like, You don't have to worry about that. Just get what you want. And if you don't like it, order something else, until you find something you like. But we need to make sure that you're eating, and we're still taking care of your very basic needs.
And they were just so gentle, and they really helped me understand to the extent I was able at the time the severity of what was happening. But they didn't do it in a way that made me feel alone or scared. I felt more comfortable here, even though I was at THE, you know, children's cancer hospital.
I was almost excited to be here because it was just like, I was overcome with hope. I think of, like, I never went to the place of, Oh, if I die from this. It was never that. It was just, what are we going to do to make sure I live? And my team here was totally on that same wavelength with me.
Even though you had the bruising, you'd been lethargic, things like that, was it a bit of a shock to the system to go from everyday life before, you end up on a life flight being wheeled into the back door of a hospital?
Well, I was a kid that like, you know, started school at 7 a.m. and I wasn’t home until like 8 p.m. at night because I had so many extracurricular things I was doing. And, you know, I was always out with my friends. I was just your typical 16-year-old kid.
And my mom and I actually reflect a lot on that moment I was told, because they didn't come right out and say like, oh, you have cancer. But I had actually told my mom before we got to the hospital, I woke up out of my sleep because I was napping in the car on the way to the hospital. I woke up out of my sleep and I looked at her and I was like, I have leukemia. And I just went back to sleep. And I didn't know that leukemia was cancer.
And so it wasn't until they were telling me like, Hey, this is what we think is happening. And they were explaining it bit by bit. I cut the doctors off and I was like, Are you trying to say I have leukemia? And they were like, Yeah, we're 99% sure that like you have cancer. And I was like, okay, but you just said yes to leukemia. And you're also saying I have cancer, so I have both? And they're like, no, like leukemia is cancer.
And so in that moment, just total loss of any childhood innocence. It's difficult, especially now as I'm getting further out from treatment – I’m six years out and I'm 23 now. And when I look at a 16-year-old now, I see a kid. And to think back that there's a moment in my life I can pinpoint when my childhood was over. And it's really difficult to kind of like, reflect on.
It is. And, you know, like you talked about in addition to that, that gravity of it and not knowing the difference between leukemia and cancer, because I thought the same thing, too. I thought something was wrong with my arm. I didn't realize it was cancer. To being told it is a rare type of leukemia. So, can you explain that a little bit – and I know you underwent a different kind of treatment protocol than most patients with your type of leukemia do.
Yeah. And, you know, there was like this immediate payoff, I guess, of choosing the treatment that I did, and my doctor really breaking all that down for me and helping me understand why it would be important to be on the new protocol. And taking the time to develop trust with me. And I came in on the weekend and he still took that time to explain everything.
And it just made sense to me to choose the new treatment. And I really trusted my doctors, that they knew what was best. And the other treatment honestly sounded really scary, too.
And what was that main difference? I remember a lot of it was timing. What was the difference between the treatment you could have gotten in the treatment you chose?
Yeah. So the typical treatment for leukemia is two and a half to three years, but my new protocol was nine months. And so that's literal years of my life back that could have been dedicated to cancer treatment. And so it allowed me to get back to a new normal way sooner than I would have at any other hospital.
Emily and I both work for ALSAC, which is the fundraising and awareness organization for St. Jude Children's Research Hospital. At ALSAC, we share stories about patients in a lot of different ways.
We get to make videos. We also arrange to have patients talk in person and big events. Patients don't have to be a part of that storytelling. They only do it if they really want to. And when Emily was in treatment, she really wanted to. I asked her why.
I think it's because of how I was raised, primarily. You help the next person in line. And even though I was still in the line, I mean, honestly, Joel knowing that you had survived and were also a former patient. And getting to work with you and other members of the patient team that had also been patient family, like I was introduced very early on the impact of the St. Jude family.
And so, I just wanted to jump in. I just loved being in community with people like that and it just made sense, and I felt drawn to it.
And we were honored that you talked to us. And I think, you know, for a lot of people – and my parents are no exception – it’s an interruption of life, but it's not a life-stopping.
And I've got a full album from that year that I was here. And you allowed us to take -- not just an album because I was long before, video barely existed when I was on treatment, so it long before you could actually have a portable camera to walk around with. So we have photos from that. But you allowed us to walk around with a video crew to take note and keep record of this interruption. And you also didn't stop either.
I know one thing that was big to you beforehand and going through treatment was music. How did you use music to help yourself, kind of guide yourself through your treatment? And what special moments did that bring to you while you were here at St. Jude?
Well, I think, Joel my claim to fame with you will always be our day that we got to spend with Alabama Shakes and documenting that whole experience. And it seems like there would be a more profound or more eloquent way to explain it. But really, it just felt right to be able to let you all in.
Music has always been a huge part of my life. Hearing myself say that just now, I can literally remember saying the exact same thing when I was 16. But it was healing and it was cathartic and it took me out of this reality I was forced to live in. It was really just a practice of self-care and taking care of my mental health.
And I didn't even know it at the time, but it was just my outlet and a way to feel connected to who I was before cancer. And still to this day, when I hear certain songs, you know, it reminds me that I am this whole person, despite having had cancer at 16.
And being a cancer survivor is a huge part of my identity. I mean, it's why I do my job every day. But music reminds me that I am also a whole person without the cancer survivor part.
What's beautiful about your music, too, is it reminds us that it's part of life, and you're still living life while you're going through this. So I applaud you for being brave enough not only to share your story, but share your musical ability. Because it wasn't just with a camera and a few people around. Oh my gosh, probably like four months into Emily's treatment we made her get up on stage in front of 1,500 people and perform a song.
And I mean, it didn't take much convincing. I don't think you made me. It was like, Oh, my gosh, this is really cool. Because, you know, people ask me, How can you go back and work for ALSAC? Well, because when I was 16, the first time I got to speak in front of a group of people and perform and share that, that vulnerability with such a large group of people – and I had terrible social anxiety at the time, so it was this huge thing for me to do – I was met with applause. And people cried with me, they laughed with me, they sang with me. It all goes back to being in community with people. And the ALSAC community and the St. Jude family, all of that has raised me and very much molded me into who I am.
I mean, when you're 16, you're really figuring out who you are for the first time outside of your family's identity. And it's this fun time where you kind of get to choose who you want to be. And I mean, when I'm presented with these people, that the values align and this mission that is so heart-filled like, yeah, that's who I'm going to choose to be and show up, as in the world.
And I remember like meeting survivors for the first time and being like, Oh my gosh, your hair is so long! And it gave me this hope that like, I'll be past this one day.
And so, now being six years out, I've been very reflective because I didn't know if I'd graduate from high school even. And then I just graduated from college. And so I feel like I'm just so content with life because I know 16-year-old me would just be so excited to see me doing this.
And so, you know, treatment went really successful with you, you go back home, do you feel different? Do you have a different perspective as you jump back into high school, having been through this nine months of very aggressive treatment?
Yeah, I mean, my treatment was incredibly successful. Ninety-nine percent of my blood was leukemia when I got here. I lose my hair and everything. And then 29 days in, I'm considered in remission. And then five months to the day of diagnosis, I'm considered cancer free. And I've never left that cancer free remission since.
But going home was not a grand homecoming. It was really difficult. One of our friends who's a fellow survivor, I'm going to borrow his metaphor because he really just put it so perfectly. Cancer, like, takes you out to sea and it's like everybody's hanging out on the beach just doing their thing, and then it dumps you back on the beach.
And so you've just had this crazy thing happen to you. But everybody else is like, we've just been hanging out. Like we've just been here. Why are you so, like, literally washed up and disheveled? And I have a lot of forgiveness and respect for my friends at the time because they were kids. I can't expect them to know how to be there in support.
And I didn’t know what I wanted for support. I knew I wanted to feel normal, but I also didn't want people to ignore the gravity of what I had just gone through. And I also had friends my age that were still here in treatment, or even kids younger than me that I saw as siblings, you know, still here. I couldn't just go back. As badly as I wanted to, I couldn't just go back to a normal life.
And I mean, the chemotherapies that I have, they're really successful at giving me less long term physical side effects than traditional chemo. However, the mental side effects are heavy. I struggle with depression daily, and for a while I struggled with survivor's guilt. Watching my friends go through treatments that are, in my perspective, 100 times worse than what I had to go through.
And then, both of my best friends I made on treatment passed. So I didn't really jump back in and go back to normal. It's taken me a long time. I think right before the pandemic started, like fall of 2019, if I had to point to like a time in my life that I felt I was really becoming Emily instead of that girl that had cancer, I think that was the time that I really felt that.
I mean, I'm still doing it. I'm still reclaiming parts of who I was before cancer. And most recently, I've gotten back into outdoor activities and kayaking and canoeing and hiking and swimming and all those things. Those are things that I just didn't trust my body to be able to handle. And now I'm doing it. And it's fun. It brings this whole joy back to my life.
Well, not only are you doing that, you've made the decision to come back and work for us. Was this something that was instantaneous? As soon as you left from St. Jude? You were like, I got to go back? Or did it gradually build over time that you wanted to be back here?
We say be back and I don't feel like I ever left.
No, I guess you didn’t really.
The one cool thing about being 16 is that I do remember so much of it, and I was -- as developmentally as I could be – aware and understanding of things that were happening. And so, I kind of just rolled into traveling and speaking. And I've done hundreds of events for ALSAC and St. Jude and they've been a blast.
And those are definitely some of those high points for me, even though, you know, I have neuropathy and drop foot which are, impede my daily life sometimes. So, you know, traveling was hard sometimes, but it was always really worth it to be able to go and see our supporters in person and hear, you know, how they're connected to St. Jude or why they think supporting St. Jude is important. And getting to experience different regions of the country and what they know of the hospital, and getting to be somebody’s touchpoint and knowing that that means they're going to come along and learn about all these other incredible stories and what we do and the research we're doing.
But I didn't stop. Anytime they asked, I was like, I'm going. And then I did two internships here at ALSAC, which were really fun and really pushed my professional growth. And that's why I feel like ALSAC has raised me so much because it's not just – I say “just” like quote unquote – just been raising funds for the hospital that never charged my family a cent for saving my life.
You know, you all have raised me as a person and a professional and I don't know who I'd be without ALSAC and all the people here. So really, it didn't even feel like a choice. It was kind of just like, yeah, this is my path that's unfolded and so I need to do this.
We're glad you're here. And tell me, what is your actual role right now? What do you doing for ALSAC?
So right now, I'm on our One Social team, which means that I work on our social media content strategy and executing that strategy. And I particularly work a lot on our TikTok channel, which is super exciting and really fun. And I love getting to amplify patient stories and supporter stories and stories from our hospital staff. It's just really fun.
Oh, it is. I work on it in a much less cool capacity, I'm the old guy who just works on regular video stuff. But it is.
Regular video stuff. But it is great. It's something that I, I felt like it took me a while to kind of be like, Oh, I want to come back and work for St. Jude. But I, I don't know.
Like, I like for me that motivation was in being with other people and being able to share their stories because I knew I always wanted to share mine.
What is your motivation behind wanting to be here and giving your life to this now?
Joel I think I've got you to blame because it's the same. It's very much the same for me and you being the first person that interviewed me on a patient panel and being that jumping point of then, like, I was getting asked to speak at all these events because of the people who were there that heard that patient panel, you know..
For me, I recognized from the very beginning – maybe I didn't recognize it, but subconsciously – I’ve always been aware that you come back, and it's not just your story, it's all the other people's stories that you get to amplify and also make possible. By telling stories we’re then helping the hospital do what they do and their incredible work so that we can continue to have these stories to tell.
It's really cool.
And outside of just work, how is life now for you? What’s an average day like in the life of Emily?
Well, I always get to go home and be greeted by the most adorable dog in the entire world. And her name is Danny Marie, because, of course I named my dog after Danny Thomas and his wife, Rose Marie, our founder.
I love Memphis. I was an urban studies major here at Rhodes College in Memphis, so I got to study the city pretty much for a couple of years, and now I get to go out and explore it and experience it. Not only, like, not as a St. Jude patient, but also as an adult. And then getting to go hang out.
And there's just so much fun stuff to do here, especially with the outdoors, things that I'm rediscovering. Yeah, I'm really enjoying it. I just hang out. That's what I do.
You deserve to do that. For the interruption you had to have, being a 23-year-old who enjoys hanging out is wonderful. It is a wonderful thing. And just as you look at your life, where you are now, the average fun day you get to have. What role has St. Jude played in that?
ALSAC St. Jude has made it possible that I can hang out and watch TikTok’s at home and then also get to make at my job the next day. So that's a really great.
St. Jude has made it possible that I get to live a life that not only 16-year-old Emily would have been proud of as a cancer patient, but also 15-year-old Emily before cancer was ever even a part of my story.
That is what St. Jude gave me. They saved my life so that I could go back to the kid I was before and make her proud and do the things that would make that version of me happy. And doing it without the constant fear of relapsing. They just so holistically take care of us through genetic testing and our survivors clinic. They gave me all of those tools to feel empowered for further health care decisions. And that's just a reality of my life.
They also gave me really cool people. I mean, even my friends that have passed, I'm just so, so grateful for the community that we are given by living in communal housing facilities. Because that introduced me to just this really cool, diverse group of people that, you know, I've known children that only lived to be four or younger, even, and how cool that St. Jude is a place where our paths got to cross, even for the short time of their life.
I got to witness their little light and that is just, St. Jude has given me that perspective by giving me them and letting me see them be the little lights that they are. I mean, like these kids are just the best. And I drew inspiration from them, even as a fellow child that had cancer because, I mean, the young ones, they're running around and they're laughing and they're playing and it's just their normal.
They don't know anything different. So, it really ultimately gave me perspective that I'm really grateful to have.
Well, know that you give us all joy and perspective, Emily, whether it's in an audio booth, on a stage or in life, you are a constant rock star. So, thank you so much for taking time to speak to us to share your story and insights. I can't thank you enough for that.
So as you all heard, Emily's cancer was very unique and she got the cutting edge treatment at St. Jude she needed for that rare type of cancer. The advances at St. Jude are a result of extensive research and dedicated care, and the doctors and researchers are always looking for new ways to treat cancer and other catastrophic diseases.
What I want you to know most of all is this work is possible because of financial support from people like you. You can give to St. Jude online at stjude.org or click the link in the episode description. Together, we’ll make cures possible for every child, everywhere.
So obviously I don't make this podcast alone. This 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.