Giving back, buoyed by a lifetime of support

Transcript:

Joel

Hi, I’m Joel Alsup. This is St. Jude Storied Lives. 

This podcast gives you a chance to know someone's life after they finish treatment at St. Jude Children's Research Hospital. St. Jude saves lives, and then those people go out and live their lives. You know, that’s one of the best parts of my job, meeting people who were patients like me and learning about what they’re up to now.  

Today, I want to introduce you to Holly

She grew up in a small town in Arkansas. It’s only about an hour north of Memphis, where St. Jude is located. So when she was going through treatment, Holly

 was back and forth all the time, between St. Jude and home. And her community rallied around her. 

Holly (Intro clip)

They sent gifts, homemade gifts that they had made. They were sending cards that they were praying for us and their church was praying for us. We had a local community group that held a carwash with the fire department with us. My coach held a free throw shoot-a-thon at my school. So it’s stuff like that that drew me to this community, and that is what keeps me here and wanting to give back. 

Joel

Having cancer can make you feel pretty isolated. But knowing that people in your town have your back – it might not get rid of all of those feelings of isolation, but it helps a lot. Because the experience can be shocking, especially when you’ve just felt like a typical kid your whole life. 

Holly

 I was playing soccer and basketball, hanging out with friends. Loved being at school. Running around the neighborhood, just doing all kid things, I think.   

Joel

And then, at 12 years old, something changed for you. What was the first sign that something might be up? 

Holly

My leg started hurting really bad. My mom really started watching. But at first she was just kind of like, she's just complaining, she's okay. But then she noticed that for my older sister's basketball games, when we would go to watch, I would not even climb the bleachers anymore. I would just sit at the bottom. And that's when mom was kind of like, okay, this might be more serious than I thought. She doesn't even want to climb the bleachers.  

And so we went to a local doctor, and he thought that I had sprained a ligament in my groin. And he had just prescribed painkillers at first. And what we didn't know at the time because I was only 12, is that I have an adverse reaction to narcotics. And so instead of, like, just calming me back down and helping the pain, it actually just like amped me up, which amped the pain up for me. And so it actually just made it worse.  

So we went to our local bone doctor and he did X-rays, and he did not even review those X-rays with us. He packed them up in an envelope and said, I'm sending you to the specialist in Memphis. That's when things got more serious.  

As a 12-year-old, for me, I didn’t know what was going on. We were just go to the doctor’s, whatever.  Until I walked out from the back of that office and my whole family had come. People from, here in Blytheville, but also Little Rock. My aunt from Virginia Beach was also there, and that's when to me I was like, oh no, this is serious. 

And what my parents remember is that the nurse at that doctor's office said, if he looks at your scans and thinks that it's cancer, he's going to send you to St. Jude today, and we went to St. Jude that day.  

Joel

Yeah. So you get to St. Jude, again being 12, you might have not heard, it might have gone over your head. What did they officially say was going on? What was the diagnosis? 

Holly

So first I think, like the drive to St. Jude, I'm like, okay, well, they just said that that means I have cancer. And I'm like, I don't know anybody who has made it and beat cancer, especially at that time. It was 2002. You just didn't hear as many stories. And so, then we're on our way to a hospital. And to me, that's like white walls, white tile, sterile environment. Nobody's happy. But then you get to St. Jude, and it's a whole new world, which we can talk on.  

So, there I had a biopsy done, and they said that I had Ewing sarcoma, which is a type of bone cancer. 

Joel

And yeah, like you described a little bit about St. Jude. It's different when you walk through those doors the first time. What was your first impression?  

Holly

This is a hospital?! (laughs) Miss Patty was there at the time, and she was just like a ray of light when you walk in that door. But also, like, not only do they just especially that first time, they don't just stay behind the desk and wait for you to come up to them. They're like, hello, welcome! And that first time, like they just came right up to us, gathered us, took us in.

But there's not a white wall in that hospital. I mean, it's grown a lot since then, but I'm sure they've still worked on. There's not a white wall. Everybody that seems to work there that I ever met, like St. Jude, really tries hard to find the people who want to be there because you don't meet anybody that's not happy to be at their job.

Everybody's happy, which makes you, as a patient and a family, feel so much more comfortable being there. And it doesn't take long for the people of St. Jude to become like your family. 

Joel

For sure. And I think for me, I was a little bit younger than you when I went through my diagnosis. But, you know, I didn't understand, like the bigger word of like a Ewing sarcoma or an osteosarcoma. But the word cancer meant something to me. What did that mean to you? When you hear your name and cancer in that same sentence?  

Holly

Well, to me, I thought that I wasn't going to make it. Like, I thought that was the end for me. I didn't even know what treatment looked like for people with cancer. I just knew they got really sick and most of the time they didn't make it. 

Joel

Was there relief as you started to be at St. Jude more and learn a little bit more about –  

Holly

Yes, because you get to see so many people who are making it and who are coming back for appointments, and you get to see all those people who beat cancer and they're surviving and they're survivors. And that's just so cool to see.  

And the people at St. Jude, I think that they always express hope without giving you false hope, but they are able to give you hope because of the things that they do there. And so, nobody's ever just sitting around bearing bad news. So, it does give you that, oh, wait, hold on, maybe this is something that I can beat.   

Joel

Yeah. So, what did the treatment look like for you? What did you have to undergo to get better?  

Holly

I went through a year of chemotherapy, which looked like a swing shift. Like I was, inpatient every time. But I would be there for five days and then come home for a week. Three days, home for a week, five days like that, rotating shift like that. On many different chemotherapy drugs. And then I had a month of radiation where I went every Monday through Friday for a month. Thankfully, we live really close. We're only an hour from Memphis, and so I was able to get the first radiation appointment every day. And then I came back. And as long as my counts were not too low to be out, I came back from radiation right after and went to school the rest of the day. 

Joel

So did you make any friends while you were at St. Jude?  

Holly

Yes. And things I remember the most about what we did is, the jukebox. We played on the jukebox.  

Joel

I remember that jukebox.  

Holly

And, also, the child life specialist was on my floor at that time, and she really kept us doing fun crafts and things, and that's what we bonded over, was being able to go to those craft times and do those types of crafts with her. 

Joel

And how did that help you through the treatment when you were doing the crafts and stuff like that?  

Holly

Well, I always think of how my mom made me get out of the room, like if there was craft time, I was going. Even though I didn't want to, when I got out, I was like, okay, yeah, this is what I needed. Sometimes you do. You just have to get out and you have to see other people and you have to laugh again, just to build your spirits back up. And I know that the chemotherapy helps, but also that part of it is really helpful as well.  

Joel

Thinking about it too, you mentioned school a little bit. Were you doing school back here? Or were you doing the St. Jude school program?  

Holly

I was doing school here still. For that year, I missed almost every first hour period. At that time, I was in seventh grade. So, I missed every first hour period. But I was able to work on making that up. And then when I was in-patient, they would just send my work with me. And my mom helped when she could. My dad helped when he could. But also, the nurses are more than just nurses at St. Jude. They become family. They become teachers, they become friends. So, they also helped me with that work when they could.  

It was different, though, being a kid who, you know, I told you I just felt like a typical kid. And then this happens to you, and you lose your hair. You're going through something that almost every kid around you has no idea what you're experiencing. They just know that you're sick and you're here sometimes, and you're not here sometimes. And so, I think that part for me was hard because they were still getting to experience typical kid things, like becoming a teenager. Because I was 12 to 13 at the time, and I moved from elementary school to what is high school here. And so that was just a big change. Like they were getting to go to dances, and they were getting to do their hair and makeup and experience that typical changing to teenage years. And I wasn't getting that time. And even though I was trying to come back as much as I could, it was still just a whole other world that I was experiencing it through.  

Joel

How did your close friends handle it? Were they with you or did you feel like you're isolated from them?  

Holly

No, I feel like that they were with me. They had their own things they were going through like I did. But we still were trying to bridge that. It's like a gap. You're still trying to bridge that gap to be the friends that you were. But even afterwards, we were still friends.  

Joel

And you mentioned a sister, too. How did your sister handle you going through this?  

Holly

You know, I've always wanted her to share her own story for this. But we experienced a lot then, and when I was diagnosed with cancer was the year that she graduated high school. This part makes me emotional. As an adult, I think about her a lot and the things that she didn't get to experience because of what I was going through.  

It was in April that I was diagnosed, and she graduated from high school in May. So what did she not get because of what I went through? And I know that she doesn't always look at it that way, but I do. 

And then, her first year of college and being out on her own, like, I'm sure it was really hard and to have parents that were having to run back and forth and not get to be a part of the things that you want them to be, because they have to be there for your sister. That's hard too. 

Joel

I feel the same way. I always want my brother and sister to share too, because I'm the oldest of three and having a brother who was four at the time when I started and a younger sister who was one. She's now a nurse, so she handled it pretty well, I think.  

You had family taking care of you. You had friends watching out for you. But this beautiful community, how did Blytheville really take you in and wrap up your family during this difficult time?  

Holly

People that I didn't even know were reaching out. People that my parents worked with, my family knew, the churches, the schools, they were all reaching out to let me know that they were praying for me. The fire department held a car wash with our local ESA group (Epsilon Sigma Alpha, an international service organization). ESA with my coach in high school, also held a free throw shoot-a-thon where they raised money. So, it was just things like that where they just rallied around. And then still, even after treatment, like, even now, sometimes I still hear people that are like, oh, yes, I remember when you were little, and you had cancer. I remember your story.  

And then ESA, as well, they're huge St. Jude supporters. While they were there for me during that time, they also invited me to their local cable-thon that year and every year since then, and this is year 21. And, then when I left for school, they were always like, you know, you're not that far away. You could join our group. I didn’t. But as soon as I moved back, I was like, okay, you’ve got me now. I'm here. (laughs) 

Joel

And just so our listeners know, ESA is Epsilon Sigma Alpha, and they are an organization that has really been with St. Jude since the very beginning. I think Danny Thomas, our founder, was an honorary ESA member early on. And they, if you watch any dream home telethons or listen to any radiothons the ESA people are usually the ones there answering the telephones, they do their own fundraiser. So, they're really a place that has wrapped their arms around St. Jude. I'm so glad that they welcomed you in as well. What's it been like being a member of ESA now? 

Holly

Well, we've been back in Blytheville for four years, and I'm president this year.  

Joel

Alright! Congrats!  

Holly

So, came in strong. But it has been incredible. I say that the community really poured into me. And what ESA has allowed me to do is pour back into this community and give back to St. Jude. And those are two things that mean a lot to me because of my time at St. Jude. So, one of ESA's biggest global initiatives is St. Jude. So that's incredible. So, I get to do stuff for St. Jude all throughout the year, and our little community just this last cable-thon raised over $300,000. And that always just blows my mind what our community can do together.  

Joel

And what are your feelings about the people back at St. Jude? Did you did you make close friends with the staff members who were there, who took care of you?  

Holly

Yes. That's what's so great about St. Jude. And I had mentioned, is that St. Jude, they look for the best in people to work there. And so, it's easy to develop those relationships with people. And when your time at St. Jude is over, it should be like this huge celebration, like when your treatments are done, it should be this huge celebration. 

But really, it's like a bittersweet moment. You're so happy that you've beat cancer. You're done with treatment. You don't have to be sick like that anymore. But you're like, wait, this was my home. This is my family, and now I have to just leave them. That part is hard too, but I think that speaks volumes on what the hospital does.  

Joel

Exactly. I think for everyone I talk to, they always talk about what a bittersweet moment that is. Leaving that behind.  

So, as you move through high school, go on to college. Did what happened to you at St. Jude like, frame whatever you wanted to do in college? Did that kind of have an impact on you and wanting to help out in any way?  

Holly

I thought I wanted to be a nurse because of my time at St. Jude, and so I started going back to school for nursing. But one summer, I came back home, and I was asked to help at our local Boys and Girls club, and I did that, and I found out I was supposed to be a teacher.  

Joel

That’s still awesome, that’s giving back. 

Holly

Yes. So, I switched my majors and became a teacher, and I've been loving it ever since.  

Joel

So, tell me about that. What do you do now? What ages do you teach? Who are you teaching?  

Holly

I'm a special education teacher for fifth and sixth grade at the school that I attended kindergarten through 12th grade at. 

Joel

Okay. That's awesome. What's it like? Do you get great fulfillment out of that kind of job?  

Holly

Yes, absolutely. I think any teacher loves those light bulb moments. But as a special education teacher, I feel like it's even more of an impact because it's something maybe that we've been working on for a lot longer than a typical student may. But then when they get it, they're even more excited and you get to share in that excitement with them.  

Joel

So, I know you went away to college, not terribly far away, but you decided to come back home. Why was it important for you to come back to Blytheville after school?  

Holly

The biggest reason was that my husband had gotten a job here, and I did not like him driving the hour back and forth after he worked 12-hour shifts. And I was like, you know, I think that I would like to be back there, too. And my nieces still lived here. So, I really wanted to be more a part of getting to watch them grow up.  

And so we came back, and we've been loving it ever since. We're both involved in the community now and that community that gave to me, we're loving giving back to them. 

Joel

And speaking of that, giving back too. Do you feel like you're able to, you know, not quite the same thing, but draw on your experience going through that tough time in school as you're teaching your kids? 

Holly

Yes. Sometimes I feel like I'm more, I try to be more understanding for them, some things that they've experienced. I also feel like it helps me with the aspects of – what happened to you this morning, what happened last night? Why is your week the way it may be, today? It really just gives you a chance to connect deeper with those kids, knowing that there may be something else going on. 

Joel

So, tell me a little bit about the romance. How did you how did you meet your husband?  

Holly

So, I was friends with his brother, and his brother moved back to where they lived near Chicago. And me and my friend wanted to go visit. And I really got to spend some time getting to know this brother. (laughs) And came back. But we, after that trip, we really connected, and he was interested in going back to school. His father had passed away right after he was out of school, and he had taken the time to get a job and take care of his dad. So once his father passed away, he started looking at, well, what do I want to do?  

And he had wanted to be an engineer. And so, I sent him all the information about the college that I was attending in Jonesboro, Arkansas State, about their engineering program. And he was like, you know what? I think I'm going to do it. And he moved down here, and that was the start of it. 

And now we come together for over ten years and married for three – I’m sorry, I can't count. (laughs) He can't either. We just celebrated our fifth anniversary. (laughs) But I don't know why I was really stuck on three for a second. (laughs) 

Joel

It happens. Life gets busy. So, thinking about that too. Something I always am interested to tell people about because I have a very skewed perspective on this. My wife is a St. Jude patient as well, so of course we talked about our time at St. Jude all the time. Was this something you initially felt comfortable telling your future husband about? Was your cancer journey and your time at St. Jude, or is it something you gradually worked into? 

Holly

Well, I felt that I had to right away because, what I didn't know is that when I was going through chemotherapy and radiation, I felt pretty good. I wasn't as sick as some people may get from chemotherapy. The radiation didn't seem to affect me. Like I said, I was doing radiation, going straight to school right after. 

Until a couple of years after that, and then I found out that radiation really did some work on my insides. And so, I've really experienced long-term side effects instead of those short-term side effects, from radiation especially. And so, from the very beginning, I had to tell him about my time at St. Jude because, I knew that I wouldn't be able to have children. 

There was no point to me in somebody spending time with you and getting to know you and dating you and thinking about marriage, if that's something that they couldn't handle. 

Joel

That's a brave thing to say. And how have you guys navigated that now? I mean, you seem to be just such loving, kind, amazing people, that this is something that you guys just handle. To me, it just seems like you handle it beautifully.  

Holly

Well, thank you. We don't always handle it beautifully. It's actually really been a very, very hard journey. When I was 16, was the first time that I was told that, well, that person said you're never going to have kids. And that crushed me as a 16-year-old. While I wasn't sitting around like, I can't wait to be a mom and have kids, that's what we were like, ingrained, like, that's just what you do. You get married, you have kids. That's what you're supposed to do.  

So, to me, when that first person said that at 16, they were telling me like, well, you're done. You have no purpose. Like, yeah, you beat cancer, but now you can't even fulfill what you're supposed to do in life. So that part was really hard for me since 16, but it is something that I have battled up and down with, and my husband joined me on this rollercoaster of a journey. 

But we had been to fertility clinics and even that is such a roller coaster. You hear like, oh, there's hope. No there's not, there's not hope. It's not happening. Oh, there's hope. And we finally, it was just so much heartache that we decided that we couldn't do that anymore, that route.  

But we have decided that we are taking the route of adoption, and we're hoping and waiting and praying for a little bundle of joy for ourselves. 

Joel

That's amazing. We're hoping and praying the same thing for you guys. What's life like for you on an average day? How do you how do you feel? How do you approach the world given what you've been through?  

Holly

I think it's just a lot of what I've kind of already expressed, is that giving back to the community that gave so much back to me. My husband's getting involved in our community now as well. Getting to connect with my students on a deeper level and also just really appreciating life more. There are times that we are filled with heartache of some of the things that we have experienced but remembering to appreciate all the little things as well, remembering to appreciate time with your family. 

Joel

Holly, you’re awesome, I'm so glad we got to sit down and have this chat today.  

Holly

Thank you so much. 

Joel

It was so good to get to see your smiling face and get to know you through this. And I know the listeners are going to enjoy this as well.  

Holly

Thank you. 

Joel

Giving back, connecting with people around you, where you can make a difference. I know that’s always been my way forward in times of heartache. And it’s something I see time and time again when I’m talking with St. Jude families. Understanding how precious your time is, and how powerful your actions can be for those around you. That’s what this whole place is built on, from the medical and research staff to the families to the supporters. I want to thank you for listening. And thank you for your support. 

This podcast is a production of ALSAC, the fundraising and awareness organization for St. Jude Children's Research Hospital. It's produced by Geoffrey Redick and edited by Grace Korzekwa Evans. Music production by Kazimir Boyle. Recorded by Jason Latshaw, Nathan Black, Bobby Mitchell,  

Orlando Palaez and Dan Yohey. And I'm Joel Alsup.  

Announcer

St. Jude Children’s Research Hospital understands that every patient’s journey through treatment is unique. Listeners who have questions about their situation, diagnosis or treatment options should talk to their physician. These personal stories are not intended to provide medical advice.

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