Lindsey

Transcript:

Joel

Hi, I’m Joel Alsup, and this is “St. Jude Storied Lives.”

If you’ve been listening, you know I was a patient at St. Jude Children’s Research Hospital when I was a kid. And you know that I’ve met some lifelong friends through St. Jude. You can hear it in how we talk to each other because the conversations on this podcast are a lot like the ones we have without microphones around. And that’s because nobody else understands exactly what we’ve been through. Today, I want you to meet Lindsey, because she can actually say it much better than I can.

Lindsey

We're all figuring out how to navigate this together. Childhood cancer survivors are still a pretty new and exciting occurrence. And so, as we go through all these life experiences together, it's so important to have that community who can say, I know how you feel.

Joel

Now, before she was part of the St. Jude community, Lindsey was part of a tight-knit small town. She grew up near Branson, Missouri. She says she spent her childhood outdoors, always with her two older brothers.

Lindsey
Playing and exploring and pretending like we were in “The Goonies,” often. Following the train tracks, looking for adventure is the best way to describe my childhood.

Joel

Some more about the small town. Did you have a lot of family there? Not just your mom and dad and brothers?

Lindsey

Yes, I was very fortunate. I grew up with lots of cousins around me and we all lived very, very close, often within eyeline distance of each other, so we could see our family just across the hillside.

Joel

So, you had this happy, idyllic childhood. And around the age of ten, in the fall time. I know you started feeling differently. Can you describe to us what were some of the signs that eventually led you to St. Jude?

Lindsey

I went from being a really active kid, you know, loved to play outside. I loved playing with my friends, loved school, and I just started getting really tired. I couldn't keep my head up in class. And when it was time for recess and my friends would rush out to the playgrounds to play on the swings like we always did.

I got to the point where I would choose to lie down on a bench and sleep instead. But it was cold and flu season and everybody started to get sick in my class. And we all thought – my parents, my teachers, even my pediatrician – that I was getting a little bug that was going through school and I would just recover, just like my friends.

Joel

I know you had good parents. Probably noticed something wasn't quite right, whenever you were feeling that way.

Lindsey

Yes, they could tell. I couldn't shake it. I was bruising at the slightest touch. I had lost all desire to eat, and it was the morning of November 11th of 1991. My mom had come in to start my school day, just like all the days before, and she could tell I was just so tired. And she said, You know what, sweetheart? Let's call the doctor and see if we can get in today. And this face was so calm, so composed, I had no idea what was going through her mind until she told me years later she looked at me that morning and did not recognize me. And that mother's intuition was shouting at her, You have to do something for your child.

Joel

And so, she took you to your pediatrician. What happens next after that?

Lindsey

So, they did some blood work and they could tell something wasn't right. In fact, I'm very close with my pediatrician still who diagnosed me and his nurses. And they said that he went back into his office and started to cry. And he ordered a bone marrow aspiration and that bone marrow aspiration validated what he was afraid of, that it was acute lymphoblastic leukemia. And suddenly our whole world was turned upside down.

Joel

And what do you think? You know, I was a little younger than you when I got the diagnosis. And I hear osteosarcoma, that doesn’t mean anything to me. I hear cancer, that means something to me. When you hear the word cancer, not just acute lymphoblastic leukemia, what does that word cancer mean to you when you're ten?

Lindsey

Oh, gosh. When I was ten, I thought cancer was something that only happened to grownups. And so, I associated that with grownups who had passed away. So, to be told at the age of ten that I had cancer felt like I was being told I would never see adulthood. I was devastated. I thought of all the things I would miss out on, you know, going off to middle school, high school, college, and having a life and a career and a family. I just felt like cancer was stealing all of that from me.

Joel

But your doctor looked at the scans, gathered himself. What did he tell you guys after the diagnosis about what you needed to do?

Lindsey

Well, he was incredible. He sat down and talked to my family about options, places we could choose from. I'm not from Tennessee, you know, being from Missouri, we talked about places close to home. We talked about places all over the country because he wanted us to have a well-informed decision. But when he brought up St. Jude Children's Research Hospital, he did pause, and he looked at my family and he said, I have to say that if this were my child, the only place I would want her to go is to St. Jude. And that's exactly what we needed to hear.

Joel

So, you hear all this. How far along is the cancer at this point? How dire is a situation that you're in?

Lindsey

So, I was not doing well. In fact, they said I was about 48 hours away from a massive cardiac event. My body was shutting down. I'll not forget at Halloween I dressed up like a vampire and I was the most convincing vampire you'll ever see. Didn't need makeup. I looked very, very sickly. And that was because I was getting to a very dire situation.

They wanted to Airvac me to St. Jude, but I refused. This ten-year-old was very sassy and I felt like if my time was limited, from this point forward, my priority would be time with family. And I wanted to have that car ride with my family, not knowing how much time I would have left.

Joel

So yeah, you leave right after you get this diagnosis and not long after you get the diagnosis, head for St. Jude. What was that first impression of St. Jude like when you all got here?

Lindsey

It was very, very late. It was about 3:00 in the morning and we arrived at the front doors of St. Jude and the night administrator was there waiting for us. And I'll never forget that. He knew my family by name, and he took us into this big bear hug and was so welcoming and so warm. And I remember thinking, you know, he was smiling and I thought, you know, why are you smiling? Don't you know why I'm here?

And then as my parents and I are trying to figure out, what do we do next? And my dad is thinking, okay, we've got to talk about, you know, form of payment. And he's literally reaching back to his back pocket to hand over his wallet. And the night administrator sees what my father is trying to do.

And he said, there's a couple of things I need to tell you about St. Jude. First, do not worry about money. It's already been taken care of. And second, this is the best place for your child to be. This is truly a place of hope. Welcome to St. Jude, which was an incredible gift for us because when we rushed home from that doctor's appointment after being diagnosed, my parents are trying to call and find out how much money they can take out of the bank.

They're going to put the house up on the market. They're scrambling and thinking the quality of care and my chance of survival was going to be driven by that bank account. So, for the first time in that period of hearing such devastating news, we saw light and we had no idea how much more light was about to come into our lives.

Joel

And we'll talk about that light in a second. But I've heard you tell your story before. There's one detail I want to circle back on. I didn't hit on. It's kind of like almost “It’s A Wonderful Life” scene when you guys came home after that diagnosis. I think I remember you talking about people from your town being around and there for you.

Lindsey

Yes, so I’m from a very small town, the kind of town where we didn't lock our doors. And word spread immediately. And by the time that I had been diagnosed and then we were coming home, and it was about a 30-minute drive to get back home, it felt like half the town was inside our house.

People were already collecting money, trying to figure out like, how can we help? Because everybody was so worried about, What happens now, you know? And so, there were people who were loving on my two older brothers and taking care of them. You know, people were like, We've got this, we've got you. What do you need us to do?

And having this community rally for me was so incredible and so amazing. And it stays with me today that image of walking in and seeing all of these faces who are there supporting me and my family.

Joel

I love that. You have this beautiful light and that's your community. You come to Memphis and find another beautiful light that is your community here. What was it like once you learned more about St. Jude? You were in those doors, what was your treatment like and how did the people treat you when you were here?

Lindsey

Oh my gosh. I felt like I inherited all of these new aunts and uncles that were not just my nurses or my clinicians. It was my entire care team, even the individuals who would clean my room to keep me healthy and safe. I had this huge new family I had immediately inherited and they were such an important part of that support system for me as I went through the two and a half years of treatment required to save my life.

And it sounds strange, but when I look back on that time, I don't think about the needle sticks or the surgeries or the chemotherapy. I think of, you know, the hospital orderly who would wheel me down the hallway playing the kazoo. I would think about my nurses who would tell jokes and play games with me when I couldn't sleep in the middle of the night because I was so scared. You know, that's what I see when I think of my experience here at St. Jude.

Joel

I very much feel the same way. And I remember the kazoo playing very well too. Thinking about it for you as well, I mean, you start treatment when you're a ten-year-old, you end treatment when you're a teenager. What was that change in you like as you went over that age group as you're here at the hospital?

Lindsey

Definitely not a difficult teenager. No, I mean, it was an interesting journey because this experience, I think, does advance you a little bit faster in growing up. And so, I felt like an old soul really early. And, you know, as I got older and became a teenager, I was very aware of what was happening around me.

And you know, when I first arrived at St. Jude, I had that moment of, Why me? Why is this happening to me? Why do I have to go through this? And then that awareness of you look around and you're like, Why this child? Why this child? Why is this happening to so many incredible families?

And then, you know, building relationships from all over the globe and having these friendships that I would have never had, had we not had this similar experience of St. Jude. And I had a really good friend of mine who only spoke Spanish, and her name happened to be Lindsey as well. And we were in treatment at the same time together and it was great because it didn't matter. We didn't have to have traditional language to communicate. We were there for each other. We played together a lot and spent a lot of time together, even though neither one of us spoke the same language.

Joel

And an amazing thing I've heard you say too, is during your whole treatment time, you know, even though you might have been an old soul, St. Jude never let you stop being the kid and pursue the dreams you wanted to.

Lindsey

No, that was really important was that St. Jude was always making sure that I held on to the joy of adolescence and growing up. So celebrating every milestone I hit with me as if it was the most important one they've ever seen. That could be good blood counts that day, or it could be, you know, going into remission or completing treatment, or it could be just, you know, moving on to the next grade level.

It was about celebration. And then also early on, one of the things that I talked to St. Jude a lot about was one of my greatest life goals, which was to become a mother. And I asked, I said, How will this impact that future for me? And my doctor was incredible. She sat down and talked to me very honestly about the medicines I was taking, the things that we knew, but there was a lot of uncertainty at the time.

But she reassured me that she was here to fight for me and the things that were most important to me. And there's so many different ways to be a parent, but that she was going to make sure I got there.

Joel

So, treatment finishes, you go back home. I think by this time you guys had moved a little bit around. You weren't in Missouri anymore by the time you go back home. So what was it like going back home for you as a now teenager?

Lindsey

Well, it's funny, the definition of home started to morph. So, yes, I had a place where my bed was and, you know, my wonderful dog and family. But it was bittersweet leaving St. Jude when I completed therapy. It was tough. I felt like I was leaving a piece of my heart behind because no one would ever know me the way that these wonderful individuals knew me.

They just knew me in the most difficult times of my life and had guided me through so much that there was excitement to go back to the life that I thought I was going to miss out on. But there was definitely some sorrow of, This is my support system. I see these wonderful faces every day. I'm going to miss them.

Joel

And did it feel normal at first to kind of just jump headfirst back into normal life after two and a half years of it being interrupted?

Lindsey

I struggled a little bit, going back to regular life. I was this like, hippie child that was like, why aren't we out in the world, living life? Life is too precious, you know? Why are we just looking at a book? We should be living this every day. And so there was some transition for me to getting back to how do you readjust from your life being turned completely upside down. And then you're, you know, putting that snow globe right side up again and there's a little bit of, you know, fallout from that, just figuring out how do you find your place, how do you find your peer group again?

I was so blessed that I had incredible childhood friends who refused to let me be lost and still to this day are constantly reaching out and checking in and loving on me. But it was a wonderful gift. What I was able to go through and experience because I felt like it gave me an entirely new perspective on the world. And not only the world, but who I wanted to be in this world.

Joel

So even though you were a hippie kid and wanted to get out of the classroom, you still had dreams and goals. What was your goal as you got back into school? What did you want to eventually do as a grown up?

Lindsey

I knew pretty early on that I wanted to come back here and work for St. Jude. Now I don't have any God given gift for math or science, so I was really concerned that that would be limiting on how I could serve. But thankfully I was like, I just I don't care what I do. I just want to be able to come back and to support this incredible mission.

And I just wanted to have the chance to experience all the things I thought I'd miss out on. So everything from middle school, which was not quite as awesome as I thought it would be to high school to college, to having this life that I'm so fortunate to have today.

Joel

And that's how you know St. Jude does a great job, when you can go back and realize middle school isn't all it's cut out to be, like every other child. So, one of your other big goals, you go on to middle school, go on to high school, go on to college. You talked a little bit about being a parent. Were you able to become a parent?

Lindsey

Yes, I am so, so grateful. So, I actually have two incredible kids. So, I have a daughter. Her name is Audrey and she's 16. So, she's a junior in high school. And an incredible son whose name is Jacob, who's 12, and he's in the seventh grade. And it has been amazing to have the privilege to be their parent, to pass on this gift of life after St. Jude saved my life.

And then also to watch them experience these milestones that I didn't think I'd get to have. And now I get to watch them through my child's eyes, and it makes it twice as sweet than I think I would have known it to be without cancer in my life.

Joel

And also hit the big goal, too, of coming back to work for St. Jude. How long ago did you get back here? What are you doing now?

Lindsey

I've had the privilege of being here for 19 years, which is so crazy to say out loud. I've come back here to work for ALSAC, the fundraising and awareness organization for St. Jude, and I've had the chance to do all kinds of things and serve in many different ways. But the most important part for me has always been making sure to say thank you to our donors, to let them know how much they mean to us.

And that's what I have the privilege of doing every day, is to work with our donors to help them know how they're a part of this lifesaving legacy of St. Jude Children's Research Hospital, and then also to be able to help them see these advancements that we make, is made possible not just by the brilliant researchers and clinicians and care team members that work here at St. Jude. It's also made possible because of their generosity.

Joel

And also too, I know, back in, I think this was 2018. You got to have another cool event here at St. Jude.

Lindsey

Maybe, yes. So, St. Jude not only saved my life and allowed me to pass on this gift of life, they also save the love of my life. So, the host of this podcast might happen to be my husband.

Joel

And I know we got married in 2018. I was just saying that for the game of playing the listeners along as far as we possibly can.

Lindsey

Yes. We got married here at St. Jude Children's Research Hospital in 2018.

Joel

I was fortunate enough to meet Lindsey when we were 13 and 12 at a St. Jude event, so how you hear her speak today, she spoke like that as a 12-year-old. I was a very shy, quiet 13-year-old, already thought she was cute. So, imagine hearing this wonderful perspective coming out of somebody else's mouth and mind who you already like.

And then you're like, I don't know how to talk to them. So, I didn't talk to Lindsey for a while. We played the long game on this. It was, gosh, I guess about six and a half, seven years ago now. We just kind of were in different places in our life and I don't think I even asked you out. We just went and met up together and I told you I loved you. And luckily…

Lindsey

And luckily I said yes immediately. I loved him too. And it was incredible because I've known Joel since I was in treatment and he was somebody I looked up to. I very much admire you. And you were such a great, another light in my life, because here I was this almost emo child writing poetry about cancer and always taking myself so seriously.

And then you taught me how to laugh. You taught me how to have a sense of humor about our experience. And it was something that stuck with me. And I had a huge crush on you immediately. And everyone knew it, to the point that when we finally got together as adults, everybody was like, It's about time.

Joel

And this is on me. I always had a crush on Lindsey, but I was continually shy up until I was into my mid-thirties. So impressive, impressive stuff here. And I will tell you that too. I felt like after I got done with my treatment, I knew how to deal with being a one-armed person pretty fast.

But I learned how to deal with being a childhood cancer survivor through you. You really helped me understand and talk about things I was not comfortable talking about. So, I mean, very much like I glean a great perspective from you too.

Lindsey

Well, I think that's the thing that is so beautiful is that we're all figuring out how to navigate this together. You know, childhood cancer survivors are still a pretty new and exciting occurrence. And so, as we go through all these life experiences together, it's so important to have that community who can say, I know how you feel, and also to make fun of it.

Like, that's the other thing that's beautiful is to give each other a hard time about, you know, who had the most difficult form of cancer and to laugh about it and to know and appreciate what we've all come through together. And then also to realize it completely changes you in a very unique way. And to have somebody else who sees that and understands that is so precious.

Joel
This community, this life has meant so much to us. I want you to describe this because you do such a great job that when it came time for the wedding venue, we had no question about where it was going to be.

Lindsey

No, we – now you’re getting me all choked up, I can't look at you anymore. I don’t even know that we sat down and talked about it. It was just a known thing between the two of us that we needed to get married here at St. Jude. It was just so important to be able to begin that happily ever after at the place that gave us that second chance at life.

And it was the perfect day. I mean, we were here on campus. My doctor was a part of the wedding party. Our St. Jude chaplain, who cared for both of us during treatment, officiated the ceremony and we had the opportunity to look out onto all of these faces of friends and family and St. Jude adopted family. And it was just the most beautiful thing I've ever seen.

And I looked at you and I was like –

Joel

This is what makes me choke up.

Lindsey

Yes. I was like, Do you see it? Do you see all of this? Meaning not just the faces in the room, but the faces of other patients who've gone before us who were here at St. Jude, the faces of the donors who believed in this mission, and that an entertainer could create a hospital that would save children's lives. We could just see it, all of it in that space and in that time. And it was one of my favorite memories.

Joel

Absolutely. Mine too. Mine too. And you touched on it a little bit earlier when we were talking about the kids. What does that perspective having kids now, given you, knowing what you've gone through, getting to watch everything that we get to watch them go through, what is that perspective you have now?

Lindsey

I would love to claim that it makes me a better parent. I don't know that it's necessarily, you know, parenting is hard, y'all. I think it allows us to pull back from chaos and busyness that you can get into with schoolwork and after school activities and overscheduling and all of these things.

And it's just like you find these little moments of clarity and you look out and you're like, It's beautiful. This chaos is beautiful. These moments that we get to share this world with our kids and to celebrate the beauty that exists and big things and little things and to share that with them is just amazing. And, you know, to think about that little ten-year-old, I wish I could go back to her and just be like, you know, take a deep breath. It's going to be okay. You have no idea how beautiful it's going to be.

Joel

I agree fully. It's just beautiful to sit back and see that we've gotten more than we could have asked for. And it's something that we've kept part of the kids’ lives as well. So much so as a matter of fact, they kind of had a misunderstanding one time when we're introducing them to new friends.

Lindsey

Yes, they were young. And you know, from early on, even my daughter would see the St. Jude logo, she’d point at it and say, St. Jude saved Mommy's life, so she understood this incredible place. But when my kids were little and we were introducing them to a new friend, they actually asked them, So what kind of cancer did you have?

And I was like, Oh, no, hold on. Let's take a step back. Not everybody we know has cancer. But I do realize when you have two St. Jude survivors who have married, who work for ALSAC whose close friends are St. Jude survivors, it can skew that ratio a little bit for your children.

They get so embarrassed at that story now. But it just makes me smile because it does start to show how it does create this second family that you have. And you know the other St. Jude family members who go through this. It could be a parent, it could be a sibling, it could be the patient themselves. There's an immediate bond we find when we meet each other.

There's this unspoken connection of, I see you and I know what you've been through, and I've been there. And it's funny that even our kids could pick that up and go, Oh, this must be somebody else who's important in that way.

Joel

I laugh too, because you think about it and you hope maybe your kids, when you've gone through something so life changing, as Lindsay and I did when we were younger, that that maybe we raise our kids with the right perspective, and they see the big deal that we went through.

But also, too, there's a gratitude in us that they don't realize that sometimes, too, that they're just normal kids and have normal problems and get mad at us for the same things that other kids would get mad at their parents about. I'm kind of grateful for that, too, that we've helped raise two very normal kids.

Lindsey

Yeah, absolutely.

Joel

I want to circle back to our wedding day for a second. You know, you teared me up after you'd walked down the aisle and told me, you know, look at all these people out here who are here for us, who care about us, who cared about us when we were at our lowest. But then not only thinking that of the grand scheme of things that we were standing about a hundred yards away from where the founder of St. Jude, Danny Thomas, is laid to rest, and this idea that somebody had walked in somewhere and said a prayer, you know, 70-plus years ago and we're standing there today, that took my breath away.

Lindsey

It is astonishing to think of how far we've come. And then I also had this moment of thinking, I can't wait to see where we’ll go. Not just us as our new family, but where will St. Jude be in five or ten or 15 years?

Joel

And that's all we can think of is just pure gratitude. For the people who supported us, who we don't even know, to the staff who cared for us, to the friends and family who were there with us every step of the way, have now gotten us to lead our own storied lives. And that we get to enjoy that means everything. So, we're so thankful to everyone listening to everyone who's going to help out St. Jude today and tomorrow. This is what you do, and we can't thank you enough.

So, when Lindsey drove with her family to St. Jude, she didn’t know if these would be some of the last hours they’d ever spend together. I’m forever grateful her story didn’t end that way because I truly can’t imagine my life without Lindsey in it.

That’s true for so many of the people in my life now, who you’ve met in these conversations. We make up a community that cares for each other. It’s what makes St. Jude unique.

It starts with the compassion of the people who work at St. Jude, and it ripples out to the patients and their families, creating connections that truly last a lifetime. That community is only possible with your support. You can donate 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.

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