Amy

Transcript:

Joel

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

I’m lucky enough to get to talk to some of the patients of St. Jude Children’s Research Hospital, and get to know who they are, outside of their cancer story.

And that’s what I get to share with you on this podcast.

You see, I was a St. Jude patient, too when I was a kid, and I really know how important it is, to have a chance to be yourself.

To have fun, feel normal – and feel like life isn’t stopping because of this, it’s just a pause.

And for many patients, that’s exactly how it goes. Treatment moves from start to finish, and then they go back to their regular lives. A lot of times they don’t even miss a beat.

But some patients have a recurrence, and that means they have to come back to St. Jude to begin treatment again.

That’s what happened with Amy.

Amy

You know, the first time it was kind of, you know, my mom took care of calling the school and telling people. And I just wasn't around for a while. But the second time, because I was older, I remember calling up my friends that night and saying, I've relapsed. I'm not going to be at school for a while. And that ownership of the reporting of it. Because here I'm trying to be strong for myself, but then I'm trying to be strong for them, too. And so that was definitely, put another layer on top of it.

Joel

So, Amy grew up in central Illinois, near the town of Peoria. And that’s a place with a special connection St. Jude, and you’ll hear more about that in just a few minutes. When she was young, Amy says her life was laid back and easy going. She filled her days playing with friends and having fun. She says it was a pretty great life.

Amy

Normal, average, stereotypical, whatever you want to say. Single mom, but had my aunt and uncle and my grandmother that lived right next door. So still a big family unit and just loved living in my hometown, pumpkin capital of the world, all of that. So just pretty average until I turned ten and started sixth grade. Then life changed quite a bit.

Joel

Yeah, I've heard your story a few times before, so tell us about that. What was a sign that something was going on when you were ten years old?

Amy

Yeah. So sixth grade had just started. And, you know, I was excited to be with my friends, but I kind of just had this blah feeling, like I couldn't put my finger on it, couldn't describe it, really. I just didn't feel right. And as school started, I just wasn't getting excited, wasn't wanting to hang out with my friends as much.

So my mom took me to the doctor because she's like, Obviously you need antibiotics, you know, something's going on. And really didn't think too much of it because ten-year-old kid, right. There's nothing too seriously wrong with you. And doctor thought the same thing. Routine checkup, routine bloodwork and sent me on my way home.

And that night he called my mom because the lab had just called him and just said something's wrong with this blood work. And so, started the whole journey to St. Jude.

Joel

So obviously you go back, you see the doctor. What does he tell you specifically is wrong with the blood work? What is up?

Amy

It took a while. We had to go to the hospital. It was kind of like middle of the night and they're doing some more tests and blood work. And I just remember thinking, everybody needs to leave me alone because I have a spelling test next day. I already stink at spelling. So, I need all the help I can get. I need to get some sleep so I can at least try to pass this test.

So, it's probably like 1 or 2 o’clock in the morning at this point. My doctor walks in and I was sitting on the hospital bed, you know, kind of cross-legged. So, he climbs up on the hospital bed, cross-legged, sits down, stares me straight in the eye and says, okay, we finally figured out what's wrong with you. You have something called acute lymphoblastic leukemia, and that's a type of cancer of the blood. And I just immediately remember kind of like pausing, you know, it’s like time stood still because I had heard of cancer. You know, as a ten-year-old kid, my experience was, it was two gentlemen from our church had it, but they had both died.

So, I mean, it was like in this time-frozen moment, I remember realizing that, okay, my biggest worry is no longer spelling. My biggest worry is surviving.

And vividly, vividly remember looking over at my mom and saying, Mom, does this mean I'm going to die? And of course, tears just streaming down her face and she wanted to be honest. So, she said, I don't know what's going to happen, but my doctor said, well, we don't know the future, but we do know that St. Jude Children's Research Hospital is the absolute best place for your daughter. So that's where we're going to send y’all.

And my mom's initial response was, I'm a single parent, I can't afford this. And my doctor, without even missing a breath said, It's St. Jude, you don't have to worry about any of that. And my mom just literally, like, fell back against the wall and started to sob. And it was in that moment that I realized, Oh, this is a big deal.

Joel

Yeah, for sure. And you know, on top of that, you're leaving home this, this home that you love so much. What was that like for you to know you had to pack up and go away for a little while?

Amy

I mean, a little surreal. At first it was kind of like, oh, like I get to go to Memphis, like, you know, Oh, I get to get out of school. All right, you know? But then that like, oh, it's not really vacation anymore. I'm in the hospital and I'm sick and I don't feel well, started to really sink in.

Definitely started to miss my friends and family. And they were wonderful. My whole class sent cards and banners and phone calls and my extended family would try to come down and visit a couple of times. So, they did their best to, you know, make it feel like I was still surrounded. But, yeah, I mean, a hotel room was not, you know, my room at home.

And so, it was definitely started to miss some of those aspects of just being a kid and playing and getting to just live, quote unquote, normal life, you know? But, you know, walking through the doors, especially the first time I remember my mom and I both, like here we are full of doubts and questions and fear and anxiety and, you know, you name it, and just walking in and greeted by somebody right there at a reception desk.

And you could just tell my mom was like deer in headlights. And she just said, “We’re new. We don't know what to do. And the woman at registration, I don't even remember her name, but I just remember her jumping up and coming over to my mom and giving her this big hug and just saying, it's okay. We got you.

And me realizing in that moment, feeling not just like the embrace my mom was getting, but this just an embrace from like, the walls around us, you know, the love and the protection, the hope that was, you know, kind of engulfing us and realizing, okay, St. Jude is a place that's not just going to, like, treat this disease I have. It's this place that's going to take care of me, take care of my mom. It truly is this, like family, this home away from home that just engulfs you in love and hope and protection and warmth.

Joel

You know, that beautiful love, protection, warmth also comes with this world class care. Can you tell us what your treatment was like, how long you had to be here, what that schedule was like for you to treat your leukemia?

Amy

Absolutely. So, we were here for about two and a half months initially, and it was what we call induction. So for those who maybe don't know is just all this chemo to get rid of the cancer. And so, the day after my 11th birthday, I was declared in remission. So, I’m thinking, Awesome hard part's done. I get to go home, life’s going to be great. Not realizing that I now had two and a half years of what they call maintenance. So, this was kind of the daily, weekly medications to try to make sure that the cancer was gone. And we were lucky that we had a clinic in the Peoria area where I'm from, to be able to do those daily, weekly things.

But we still had to come to Memphis every six weeks for a high dose of chemo for that two and a half year duration. And I remember lots of spinal taps. I remember lots of sticks. At one point they had to stick me 27 times to start one I.V. At that point, I got a port, which was easier access I.V. then. But, you know, I don't remember – I told somebody one time, It's kind of like remembering a dream. I remember some of it, but not the specific details. It's kind of foggy and cloudy, and maybe because I was kind of out of it for some of the time, but I remember the trips. I remember being here, remember kind of always being greeted. I don't remember the bad stuff as much, except for spinals. I do remember spinals and never liking those days. But yeah, it was about two and a half years total the first time.

Joel

Okay. So that two and a half years, get back home, go through middle, school junior high, move on to high school thinking everything's great. Then what happened?

Amy

Yeah. So, I went off treatment right at the very end of eighth grade. So, I'm thinking, Yeah, I'm going to start high school. I'm finally going to be like this normal life. Get back to everything that I felt like I'd missed out on. And I did for about a year and a half till the middle of my sophomore year of high school.

And I got that blah feeling again and oh my goodness, I tried to will it out of existence, you know, Oh, it's just a virus. It's nothing. It's the flu. And sure enough, it wasn't. I had relapsed. And kind of had to start everything all over again.

Joel

How did that feel, when you get that news.

Amy

Bad! For sure, I was I was angry, you know, just like, oh, my goodness. I just went through all this, two and a half years of my life, you know, all this. And now I have to do it again. So, anger, frustration, just almost shock a little bit. But despite all of that, like all of those kind of negative emotions, as you can imagine, just with this, you know, devastating diagnosis, there was a little bit less anxiety, I guess, than there was the first time, because I actually knew what to expect this time and knew it wasn't going to be fun, but at least knew, Okay, St. Jude's there. I know the doctors, I know the nurses. I kind of know the protocols. So that gave me a little bit less anxiety. But yeah, I definitely was not happy at my doctor that day.

Joel

I bet not. And how about your family? How did they react when they heard this news?

Amy

Kind of the same, you know, oh, but we've done this already, you know, we went through it all. And my mom was a single parent, always had been. And she had actually lost her job when I was going through the first time, just because she was gone so much and she decided that she wanted to go back to school for nursing, actually, just with all of my experience.

And so she was in the process of trying to go back to school, you know, a little bit at a time. Well, now, that was going to have to be put on hold. It was just kind of like our life has to be put on hold again. So that just kind of devastation of everything having to change again was something that we all felt.

But again, just knowing that St. Jude was there was that little silver lining piece of mind of like, okay, it stinks. But we know we've got somebody who's got our back.

Joel

And obviously going from ten the first time to 15 the second time. Mentally, it's a different experience, I'm sure different experience for friends as well. How did they react as this came and you had to go again?

Amy

Yeah, it affected my friends a little bit more this time just because, you know, the first time it was kind of, you know, my mom took care of calling the school and telling people. And I just wasn't around for a while. But the second time, because I was older, I remember calling up my friends that night and saying, I've relapsed. I'm not going to be at school for a while. And that ownership of the reporting of it kind of rocked my world a little bit. And having my friends cry and experience that.  Because here I'm trying to be strong for myself, but then I'm trying to be strong for them, too. And so that was definitely, put another layer on top of it.

And yeah, just, you know, kind of the social, the emotional – everything you're going through, you know, teenage years are so hard anyway. You're finding yourself, you're finding your path. And then to kind of be completely derailed off of that path was definitely a challenge.

But, you know, I was able to find some great friendships at St. Jude and kind of find that camaraderie that maybe I wasn't able to have at home as much just because they wanted to be there, but just didn't understand. I think that's one of the beautiful things about St. Jude is they kind of built in those, you know, that family, that extended family, they built in those connections. So I definitely got it when I was going through treatment.

Joel

And the treatment itself. Was it any different the second time around?

Amy

It was, being a relapse protocol. It was, they say, like five times stronger, which meant I was five times sicker, five times weaker. So, you know, the first time I was in the hospital, maybe a couple of days here and there, sick every once in a while. But the second time I was in the hospital like almost 100 days my junior year of high school, I like I completely lost all of my muscle tissue.

So as my friends are like, Hey, I'm learning how to drive. And I'm like, I'm learning how to walk again. So it definitely changed everything that I was experiencing as a teenager and shifted it. But I think through all of that, it really gave me a different perspective than some of my friends had.

And, you know, I think a perspective that I really value, especially now that I'm older and one that I think a lot of people maybe don't get until they're older, or until they've experienced heartache or loss. And that doesn't come until you're older. And so, for all the difficult things, there's, I think, some beautiful things that I really appreciate now that that experience gave me.

Joel

And, you touched on it there and a little bit in the question before, what did it mean to you to have those connections as a teenager, whether it was patient or staff at St. Jude? What do those connections here in Memphis mean to you?

Amy

It just meant I wasn't alone, and that my mom wasn't alone. It can be such an isolating experience, you know, when I'm sitting there in a room by myself with chemo or something like that where I can't really talk to anybody because I feel so sick or, like, I knew I wasn't ever alone, but I felt lonely sometimes.

And then to realize, okay, I can look over and there's somebody who's going through the exact same thing. And just to be able to have those conversations or to be able to connect on a level or to be like, you know, I just don't want to talk today and then be like, I get it. We'll just sit here together.

And to not feel like I had to be “on” or answer questions, you know, and where my friends back home, just not being in those same experiences, didn't understand that. And so, it just meant that, despite this lonely feeling that I was never alone and that was definitely a mental game changer, which, you know, for as physical as it is, it's such a mental battle, too, that really helped shift my mindset. And there were definitely some days where I needed my mindset shifted.

Joel

Yes, for sure. Well, a great thing about your story, too, is that area you're from. This is initially how we met, too. That Peoria area has beautiful connections to St. Jude. Can you tell us a little bit about that?

Amy

Absolutely. So, Peoria is blessed to have a clinic, a St. Jude clinic there. It was the first clinic, actually, and so I kind of grew up always knowing about St. Jude. My mom as a teenager did like teen marches and things like that for Danny Thomas, never thinking that we would need St. Jude. So the Peoria community was this blessing in disguise to just be so aware of and know about and supporting St. Jude already and having so many amazing events.

So, while maybe my friends didn't get it, the community understood St. Jude and I was able to feel like I could be a part of that when I was home as well.

Joel

Yeah. And of course, the biggest thing and how we met that they do is the St. Jude Memphis to Peoria run. Crazy people, we relay 465 miles between here and Peoria. Can you give us a description of that and how you got involved and what that's like.

Amy

Crazy people is right. So, I first met the runners, being from the Peoria area, I was down during that initial period of treatment, so I was down for one of those high doses and saw the runners and so again knew about the run, thought these people were crazy because, you know, running in my book was almost as bad as chemo.

It kind of still is. But I was like, okay, these people are running, and at that time they were able to see the patients again, you know in the ‘80s things were a little bit different. And so, you know, I had people come in and be like, oh, you're from that area, we're running for you. And I'm like, You don't even know me. What are you doing?

But their heart and their compassion for wanting to help the patients and to do good, like this event is just full of the most passionate, crazy, dedicated people who really try to like, put themselves literally in the shoes of patients and trying to, you know, run for them and stay up all night for them and things like that.

And so, I was so moved by their willingness to do that. And I had a great friend who was going through the treatment. You know, one of those who sat next to me during clinic days, and we made this pact. We said, we are going to run together when we're old enough, when are strong enough, healthy enough, we're going to do this.

And sadly, he passed away about six months after we made that pact, so obviously never got the chance. But when I grew up and was healthy enough and strong enough, I knew I owed it to him, but also to myself, to start doing this. So, I always say, I don't run fast, I don't run far, but I still run – or trot along – and it's grown for me to be something that I started doing for him and for myself.

But then I kind of started to do it for all these other patients to prove to them like, there is life on the other side of this, to give them some hope. But I'm sorry, I might even get emotional now. I participate for my own kids to show them, you know, miracles can happen and your mom is one of them. And we have to keep giving back because that's what it's all about.

Joel

Yeah, it's a beautiful event, and I'm going to give our listeners a little bit of background on this so they don't think we run 465 minutes. Like I said, it's a relay. So essentially you're running between two and four mile segments and then you're off for 8 hours. Another team picks up. So, you're running probably between, you know, five and ten, 2 to 4 mile segments. So, it's not as crazy as it sounds.

Amy

No, it's the staying up all night, you know, it's all that. But come on, even two miles is crazy.

Joel

Well, it's usually in August, so you're getting August heat and two miles all along the Mississippi River. So it's humid the whole way up.

Amy

It is. But it's a great experience. And it's, you know, something that's grown into, you know, even more runs that all filter into the Peoria community. And it's an amazing way to see how St. Jude touches so many lives and, you know, how cancer touches so many lives and how, you know, we can actually all come together for something really, really good out of something that's really, really bad.

Joel

And obviously something really, really good from the run happened for you.

Amy

It did. You know, at least I claim that it's good. I don't know if he does, but no. So, when I was 16, so here I had relapsed and so I was still going through treatment. But 16 was the age at the time that you could start doing this run. And I was bound and determined to go because I'm like, I'm 16, I don't care if I'm on treatment. I'm going. And they were very generous, the organizers, Mike McCoy, in allowing me to kind of tag along. I knew I couldn't go and run and all that, but allowed me to kind of tag along, be a little mascot or something, if you will. And so, I was put in the motor home with the Jones boys at the time.

And so here I was, 16, and I met Ryan Jones, and he was in college at the time and we kind of got this little friendship, you know, I'm sure I was just this annoying little teenager at the time, but we kind of just developed this friendship. And so, every year after that, for about eight years, we would see each other at run time. Oh, how's it going? How's school? You know, how's life? Kind of checking in with each other.

And finally, eight years later, when we were both adults and in the right place and the right time and season of our life, we kind of like, Hey, let's hang out, let's do dinner. And we've been doing dinners together ever since.

Joel

That's beautiful. And I have to plug myself here too. I met my wife, who was a former St. Jude patient at a St. Jude event. So, St. Jude events are great.

Amy

I mean, they're fantastic. You know, you may have to deal with some bad, but hey some pretty good stuff can come.

Joel

And obviously had another big influence on you. You're now one of my coworkers here at ALSAC, the fundraising and awareness organization for St. Jude. Why did you want to come back and work here?

Amy

I wanted to say thank you. You know, there's so many people over the years, I mean, gosh, almost 35 years now that I've been a patient. Thousands of people that I will never see, never be able to talk to, never be able to say thank you to that I know where a part of my story. And that continue to be a part of all these patient stories. And to just be able to be a part of thanking them, a part of bringing that back to patients who are still part of their journey, I just wanted to be able to say thank you in in the smallest way that I could. And, you know, with the impact that I could.

I am not science, math – school was never really quite my thing. So, I knew I could never be a nurse or a doctor or a researcher. And I really joke that I really don't have many other talents at all. But, you know, I can share my story. I can try to give back in the meager ways that I can. And so, it was really important to me to try to do that. Like I said, I know the people that have been a part of my story and I wanted to be a part of all these other patient stories moving forward because it means so much to me.

Joel

And what's it like for you whenever you come back to campus, see the progress that we've made, not only on campus but the research and the treatment that we're doing too.

Amy

It's just kind of mind blowing, because I thought it was impressive 35 years ago and to just see how it's constantly growing and expanding. And what gets me as much as the state of the art, you know, the research and the statistics and all of these things that I don't always understand, but just this knowledge and data that is constantly happening, I'm so blown away by.

But even to see these places that really have nothing to do with treatment, the places that are growing, the housing, the new family commons, these areas that are really just to make life better when you're here, that really are nothing like any other institution would do, just blows me away because it shows me that it's not even just about these survival rates and these statistics and the disease.

Again, it's not just about treating that disease. It is about taking the information and the experiences of all of these patients and all of these families and trying to give them the best life possible even while they're here. And so, to see the campus grow in such amazing ways, even in those areas, is just so humbling to know that I matter that much, these patients matter that much. The disease – let’s knock it out of the park, but these patients, these families, they matter, and you know, the people over everything else. And to see the campus growing in ways that really accommodate that is just so gratifying.

Joel

Beautifully said. And, you know, we talked a little bit about your life now and how it's going. You've got your wonderful husband, Ryan. In addition to that, you've got the bigger, normal life going on. What else has happened in life in that way?

Amy

Yeah, I mean, I'm like full on PTO Mom, I love it. All I ever wanted was to have this normal life, and I'm definitely living it now. So, I have two awesome kiddos, a freshman in high school and a third grader, and so life is just busy with them and their activities and, you know, doing laundry and making dinner and being chauffeur everywhere under the sun.

But it's great. And I always say, it may not be a momentous moment, but every moment is a gift. And I think one of those silver lining things that came, you know, the good from the bad, was that I really value that. I really take every single moment as a gift and appreciate it.

And even when I'm maybe yelling at a kiddo as they're walking out the door, I'm like, But you're thankful for the opportunity to do so. And, you know, that's something that I hope I never take for granted. And something that St. Jude gave me.

Joel

Every moment is a gift. It is a gift to have you as a friend. It is a gift to see the progress you've made and hear about your family. So, thank you so much for the gift of sharing your story with us today.

Amy

Thank you. It's a pleasure.

Joel

Sometimes, it’s a long and difficult journey to get back to “normal.” Amy knows that firsthand. No patient ever wants to hear their cancer has returned, but knowing St. Jude is there to support the whole person – not just to cure the cancer – it really goes a long way to helping people feel like they can get back to normal life.

It’s just another way that St. Jude proves its long-term commitment to patients. And for people like Amy, St. Jude is here today, tomorrow and far into the future. You can support that mission, and you don’t even have to run 465 miles through the middle of the country to do it. All you have to do is go online to stjude-dot-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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