A full healing circle

Transcript:

Joel
Hello, I’m Joel Alsup and welcome back to St. Jude Storied Lives.
In each one of these episodes, we invite you to get to know a St. Jude patient family, to hear their cancer story in their own words but also to hear about their lives outside of treatment.

I was a patient at St. Jude Children’s Research Hospital when I was a kid, and I can tell you, there’s always been a lot more to me than my diagnosis. That being said, sometimes a family has a relationship with St. Jude for decades. And that’s the case for Jessica and her son Charlie, who is a St. Jude patient.

Charlie (intro clip)
A lot of our friends have called it a terrible, wonderful place because you're glad to be there, but you don't wanna be there.

Jessica (intro clip)
It was a heaviness. I was like, "I can't walk in here. I can't do this." But when we walked in, like, it was nothing like I remembered it. I think if it had been exactly the way that I remembered, it would've been harder. But it was like, a set of new memories.

Joel
Jessica knew about St. Jude before Charlie was diagnosed. That’s because her older sister was a patient here in the 1980s. Everyone who works here does everything they can to save every child. But the difficult reality is that not every child survives. And Jessica’s sister Stacy passed away when she was only 10 years old.

Jessica
It was Christmas day when she died, and it was about 7 o’clock in the morning, about that time. And so, we were opening Christmas presents at my grandparents' house, and my mom and dad came in and said, you know, that she was gone. And I just packed up my stuff, and I remember going back home. And then we had her funeral a couple days later, and I never thought that we would be in the halls of St. Jude ever again.
And so, it was 34 years later that all of a sudden, I'm bringing my kid into St. Jude.
And it was just the strangest thing, the way that Charlie, that the cancer was found. It was an accident. But his brother, Beau, had had a cyst in his brain. This was 2020 right before the world went on lockdown. It was in March. So that summer, you know, everybody was stuck in the house.

Charlie
So bored.

Jessica
The libraries were closed. I mean, you know, places were on lockdown. And so, the boys were chasing each other upstairs, and Charlie had tied a rope around his waist.

Charlie
And Beau's waist too.

Jessica
And Beau's waist. And they were dragging each other around.

Joel
Good old-fashioned fun. Totally fine. (laughs)

Charlie
So, like, the bathroom connects to the hallway in my room. So we were just running around in circles in between.

Jessica
I yelled up the stairs, "Somebody's gonna get hurt. Y'all quit." And I hear this tremendous thud, "What's the matter? What's the matter?" And Charlie's, like, hysterically crying. And I run upstairs. "What's the matter? What's the matter?" And his toes are broken, they're crooked. And I'm like, "Oh, my goodness."
And I would not have taken him to the doctor for broken toes, but we hit our deductible with Beau. So, we took Charlie and he said, "Yep, those are broken." So, he just put a boot on him. And so, he said, "Come back in a couple months." Came back in a couple months. And he goes, "They're still broken. That's weird. Come back in another month."
So, Charlie starts playing soccer and when he's running, he's not swinging that arm. I'm like, "Why aren't you swinging that arm?" "I am swinging that arm." "No, you're not." And my husband's like, "You're a hypochondriac. And he's not the one that has health problems. It's the other one.” I'm like, "No, he's not swinging his arm."

Joel
And so, which arm was this, Charlie?

Charlie
Left.

Joel
Left arm.

Jessica
So, we go back to the doctor, and so the nurse comes in and I said, "Can y'all X-ray his arm?" And she goes, "Ma'am, you cannot come in here and ask for an X-ray of the arm. The doctor has to order that." And I was like, "Okay." So, she goes out and says, you know, crazy mom in exam room one is asking for an X-ray. And so he said, he hears a voice say, “X-ray him.” And he said, you know, he believed it was the voice of God. And, you know, we're Christians. We believe, you know, maybe that was. Anyway, he goes X-rays Charlie, and because we're during COVID, like, he's got the mask on. But I can see from here up that he has worried look on his face.

Charlie
We also knew him because like, he was my brother's best friend's grandfather.

Joel
Okay. Got it.

Jessica
He knew we weren't crazy people in exam one. Anyway, he says, "Tupelo is a small town." He goes, "I can't get y'all in for a CT and MRI till next week." And he was like, "You know, is that okay?" And I'm like, "Yeah." And he goes, "Well, don't cancel it." And I was like, "Okay."
So, I go home that night, I couldn't sleep. I'm telling my husband, like, something's wrong. And because I had grown up in Memphis, I had dealings with Campbell Clinic. So, I just called and they said, "We have a cancellation, can you come tomorrow?" And I was like, "Okay." So, we show up the next day, and this doctor, he does fresh X-rays and he's kind of looking and he's like, "I don't know what that is. There's something in his arm. It's very strange that there's a fracture and, like, the bone looks strange." And so he said, "I'm gonna show this to a colleague of mine."
And so, it was about an hour-and-a-half back to Tupelo. So we get in the door and my phone rings. I'm like, who's that? And I answer the phone and it's the doctor and he says, "Hey, I don't wanna scare you." And he goes, "But can you come back? Like, tomorrow morning, first thing?" He goes, "I want you to see a buddy of mine, his name is Dr. Neel.” He's like a rock star here.

Joel
I know Dr. Neel, yep.

Jessica
He's kind of a big deal. And so, well, we didn't know that. We didn't know who Dr. Neel was. So, I start Googling this guy. I'm like, "Who is he? You know, what has he done?" And I start reading that he's growing bones in children at St. Jude. And he's doing all these incredible things. And I'm like, "All right, maybe he's legit." So, we go see him.
Well, the door opens and he and his entourage come in. He's got students behind him, even during COVID, he had these students because he's a big deal. And he goes, "Sorry you guys had to wait." And I was like, "That's okay." And he goes, "I've just been getting paperwork ready." And I was like, "Why?" This was a Friday. And he said, "Y'all are going to St. Jude on Tuesday." And I was like, "Do what?"
And so, he was like, "Yeah." And he goes, "That's where you're going." And I was like, "Okay. Why are we going to St Jude?" And he goes, "Oh, I think he has a tumor." And I was like [confused vocalization]. And so, you know, as a parent, you never think you're gonna hear that. I was like, "No. Like, you've got it mixed up with somebody else."
And so, when we walked into St. Jude, like, it was a heaviness that, like, I could not... I was like, "I can't walk in here. I can't do this." But when we walked in, like, it was nothing like I remembered it. I think if it had been exactly the way that I remembered, it would've been harder. But it was like, a set of new memories.
And we come in and we meet these doctors and they're, like, running all these tests. Charlie had the scans and stuff on his 11th birthday. And, I mean, he was not a happy camper.

Charlie
There is a video somewhere.

Joel
Yeah, I know. I'm sure you wanna be doing anything but having scans done.

Jessica
There's a security video somewhere where he's fighting, like, 15 of us. And it was, every time we go down to CT, there's a guy with white hair down there, bless his heart. And he's like, "Hi Charlie." And I'm like, "How embarrassing."

Joel
It happens. All of us have had our finer moments when you're going through a rough time like that. So when you get here, what do they tell you is the official diagnosis?

Jessica
They come into the room, and they say it's Ewing sarcoma. It is a bone cancer. It's aggressive and it's everywhere in his left arm. And they were like, "It's not anywhere else in his body. It's a miracle that is not anywhere else in his body." It was just in the ball of his shoulder, and it was in his humerus in his left arm down to his elbow.
It was so shocking that we didn't even tell family. It was several hours. We ended up doing it in a Facebook post because it was easier than having to call people individually, you know? And so, Charlie started chemo.

Joel
So, how much did it entail? Like, how long was he going through chemotherapy?

Jessica
He did it for nine months. We had to do it in-patient. So, I mean, it was during COVID and St. Jude was on lockdown, and nobody could come. And we were by ourselves. And, you know, he did 14 rounds. So, I guess he did about seven rounds of chemo. And then we had to wait until his numbers were good. And then that's when Dr. Neel did the surgery.

Joel
Okay. So, what did the surgery entail? What did Dr. Neel have to do?

Jessica
They took the ball of his shoulder and then they took his humerus down to his elbow, took it out. But the interesting thing was the day before, the night before, he had to have an injection of some kind of dye and it was green. And so that way when they opened him up, they could see.

Charlie
Where it was.

Jessica
Yeah, it stuck to the cancer. Which we found was interesting. Charlie has a whole list of questions for researchers about that. Like, you know, where did the green go, like, the rest of it? They replaced it with titanium. So he's got titanium all in his arm, and he's actually broken the end of it. And we had to have the bottom part replaced. As you do, you're just a boy.

Joel
Yes. It happens. Accidents happen.

Jessica
Yeah. And then in July 2021 when we heard that he didn't have cancer anymore, it was like, "What? Like, we're done for real? Done, done?"

Charlie
We've been doing this for nine months. How does life look after cancer?

Joel
Charlie, for you, after you finally got over that initial fun times on your 11th birthday, how did you find St. Jude? What did you think about it once you were here?

Charlie
A lot of our friends have called it a terrible, wonderful place because you're glad to be there, but you don't wanna be there. But St. Jude, just so much gratitude for them because like, if it wasn't for St. Jude, I probably wouldn't be here today. I mean, even when, looking back when I was 10, 11 years old going to St. Jude, you know, part of that was I didn't mainly understand, like, what was going on. I could tell that my parents were worried. I mean, but I was 11, so I was, like, you know, I was on top of the world. I was like, you know, we're just bopping through life. You know, just doing whatever. And it was sort of, like, in the middle that it just kind of, like, I realized what actually could happen. And, you know, people would send us, like, nurses would just bring, you know, “Happys” or whatever.

Jessica
They would smuggle blue raspberries slushes in for Charlie.

Joel
Oh, nice.

Jessica
And Charlie would go on hunger strikes. He's not being entirely honest. He would get mad about having to be there. And he would refuse to eat for several days. And there was a beautiful lady in the cafeteria. Her name was Miss Lisa. She would make concoctions in the cafeteria for Charlie, special made, cheesecake shakes. She would order special things just for Charlie to try to make him eat.
And so, she was an incredible person, but she's just one of the people down there who just, they will bend over backwards for these kids to get them to eat. When he didn't wanna eat anything and all of a sudden he would say, "Well, maybe I'd like to have..." And I'd be like, "Okay."

Joel
Because it's important. Nutrition is important when you're going through this, and you're sick all the time. Your body needs food.

Jessica
For sure.

Charlie
Like, our church and our friends, you know, they took care of us so much. Because like, even she'd work in the day school at our church in Tupelo. So, like, one of the pastors came out and was like, "Are your tires bald?" And she was like, "I don't know." She was like, "Well, you know, they are and one of the church members wants to pay for new tires. You go over to Firestone, it's already paid for and everything.” And they just took care of us just so much.

Jessica
But that wasn't my priority. So I didn't even look at my tires. I was just like, "We gotta go back and forth." And he was like, "What do you mean you don't know if your tires are bald?" And I was like, "Because..."
But it was our community and our church, my family, you know, they paid bills for us. St. Jude did a lot and there were organizations that paid our mortgage while we were here. Because we went from two salaries down to one, and it was hard. It was super hard. And my husband continued to work and look after our younger son, you know, all during treatment. He brought Charlie for a few times, but I did all the chemos.

Joel
And just so we have context too, can you tell me about your family now? How old are your kids?

Jessica
Charlie's 14 now. And then Beau is 12. And then I'm super-old and my husband is super-old. (laughs)

Joel
So, Beau would've been 9 then when Charlie was diagnosed?

Jessica
Yes.

Joel
How did Beau deal with that?

Jessica
It was intensely, intensely difficult for him and he's just now kind of opening up about it. But he said he would sit in class and be like, "You know, I wonder if Charlie's cancer is doing okay. Is it back? Is it responding? I guess somebody will come tell me." You know? And he wasn't allowed to come up here because of the COVID rules, you know, and when we would come home, I mean, Charlie was so sick.

Joel
And did you feel as, you know, not only being a mom, but a sibling at one point of a patient, did you feel that extra empathy for Beau?

Jessica
Yes, because I was not allowed to come. See, back in the '80s, the hospital was different because the nurses’ area was in the inside and then the patients’ area. And then there was like a glass wall in between that you could push a button to talk to the patient. But as a sibling, I had cooties and she was always neutropenic and couldn't be around somebody that had chicken pox or strep or whatever. So, the family would sit on the other side and then there was the hallway and the window.

Joel
Yep. I remember that's the room I was in. I know exactly what you’re talking about.

Jessica
So, my sister could never look out the window. And so, like, I remember I lived with my grandparents a lot of times, during that time. And so I was very, you know, aware of how Beau felt, but I couldn't do anything about it.
I mean, he couldn't come with me. I couldn't smuggle him in. So, you know, there was one time that he got to walk. My husband and I, we were gonna switch. It was our anniversary. And I was like, "Don't buy me a present, just come switch with me." And he was like, "Okay." So, I had to leave Charlie and then come downstairs, and they had to watch us switch. And Beau was at the door. So that was the first time that he came in. I remember he was, like, looking around, you know. And I was like, "He doesn't even know beyond this door, you know, that the walls are colorful, that there are dogs here to come play with the kids, that there's the Imagine Room. That there's, you know, all these things. He just sees these doors and then that's all."

Joel
And how did your parents do, Jessica, with this news as well?

Jessica
It was intensely difficult for them.

Joel
Yeah. I mean, having been through it once before.

Jessica
Oh, yes. And it did not turn out well for my sister. And so, I think when we told them that Charlie was cancer-free, my mom said, "Are you serious? Are you for real? Like, serious?" Like, it was really hard, and they couldn't come up here. I had to be real careful what I shared because I didn't want to trigger them or to make them upset. But there was never a time when Charlie's doctors looked at us and said, "He's not gonna make it." We never heard that.

Joel
So Charlie, just, can you tell me, were you left-handed before this? Were you right-handed before all this stuff?

Charlie
So I was right-handed. Well, luckily, because that would've been terrible.

Joel
Yeah. So what do you remember about the surgery? Did you feel a lot of pain after it was done?

Charlie
Yeah. I had a nerve block, so that helped a little bit. But I do remember when they pulled the nerve block out, it did hurt. I was with my dad because that was one of their little switchy days. So, I'm staying with my dad, you know, and I remember vividly because, like, I was on all the sleepy drugs and painkillers and everything. So, I vividly remember, you know, we were playing some game and it was like I couldn't use my left arm because it was in a sling and I couldn't move it because of the nerve block and everything. So, I was, like, using my face and, like, using the other hand, we were playing a game. It was fun.

Joel
Has it been different, like, making that adjustment with your arm or are there things that you feel like you wanted to do that you're not able to do? Or are you kind of pushing through and trying to get everything?

Charlie
Yeah. Soccer, because that was kind of, like, one of the things. Because I love soccer. I love watching soccer. I love playing soccer. And, you know, that was one of the things where I was like, "You know, can I still play soccer?" And Dr. Neel was like, "No, you can't because if the ball would hit your arm, it would snap your arm and all sorts of bad things." I was like, "Oh, man." But you're either playing soccer or you're dead.

Jessica
But he also asked to jump out of an airplane.

Joel
(laughs) Yeah. I would be like, that's a high impact sport!

Jessica
We have a friend that does that, and they both at the same time, screamed at the top of their lungs, "No."

Charlie
He said, "Charlie, do you really wanna do that?" I was like, "Yeah, that would be cool."

Joel
And I read specifically too. There's a different way you ride your bicycle now or different setup you've got?

Charlie
Yeah. So, we had your normal handlebars. So we flipped them backwards. They're, like, closer because I can't really reach my arm out that far just because, like, I have half a rotator cuff. So, you know, that makes it a little bit harder. But, you know, we just adjust and do what we can, you know, and try to do because some of the chemos that I had, gave me some heart problems. So we just try to exercise as best as we can.

Joel
What my trick was, since I just have my left hand, I switched the rear brakes to the left-hand side. Because the front brake’s a little bit more tricky to grab onto. (laughs)
Now Jessica, thinking about that, from this experience that you've had, how's the family dynamics changed? Do you feel like you're closer now with everything that you've been through?

Jessica
Well. So, it was, like, my husband and Beau lived this life. And then Charlie and I lived this other life. And the life that Charlie and I lived, in my mind, sometimes I felt like nobody else understood. Like, my friends at home, they didn't get it. And then I'd have people come up to me and say, "My cat had leukemia." And I'd be like, "Cool."

Joel
Yeah. Not the same.

Jessica
Or they would say, "My grandfather had leukemia." And I'm like, "Well, was your grandfather still growing when he had, you know, cancer or whatever?" Like, no. These kids are growing and their bones and their bodies are still developing and it's different. So, I just, like, put a wall up, you know, with everybody.
And I didn't even share everything with my own husband, everything that happened, you know, at St. Jude, because sometimes it was so shocking, the times that we had to fight with Charlie or try to convince him to do something that we wanted him to do. There was this one medicine this one time and he just wasn't having it. And he had to have it, it was a lifesaving deal. And he goes, "No." And so, we were negotiating with him. The nurses and I, we were like, "If you do this, we will give you a LEGO box." And he was like, "No." And so, we were like, "If you do this, we will let you go outside." And he was like, "No." "If you do this..." And so, this went on and on and on. And it was emotionally taxing.
I didn't wanna talk to anybody. I didn't want to, like, call my family at home and be like, "What are y'all doing?" Because I've been arguing for the past two-and-a-half hours with somebody who doesn't understand, like, what, you know, the reason why we're doing this.
And so, because we had been living those two separate lives, it felt like that afterwards, we had to figure out a way to come back together because, you know, Beau and my husband, Jared, had gotten used to the routine that they were on. And then Charlie and I had gotten used to, you know, the clinic days and the way that we just, we had to do this. We didn't have a choice.
And so we ended up, we went to Panama City Beach. There was a group of pirates down there. They are the coolest. They're the Pirates of the White Sands. I'll call them out because they're amazing.

Charlie
They're amazing.

Jessica
And they planned this thing, and they dressed the boys up in pirate outfits. They had to swab the poop deck, and find the treasure, and the whole nine yards. And we were in a parade.

Charlie
Shot water cannons on, like, a boat with all their boats.

Jessica
And the boys were like, "Can we go do miniature golf?" "Yep. Let's go." "Can we go do bumper cars?" "Bumper cars? Let's do go-karts." And so, you know, we did the USS Alabama. We did everything.

Charlie
We did everything.

Jessica
And every single one of us got COVID. We touched all the things. We went to all the restaurants. We ate all the key lime pie we could find.

Charlie
We had the best time ever.

Jessica
It's not that it's worth it to go through what we went through, but oddly enough, Charlie was sick for, like, a day-and-a-half. And when I say sick, it was like –

Charlie
I just had, like, sniffles.

Jessica
Yeah, it was not even – so we had protected him all this long time, you know, trying to get people away from him or whatever.
But, you know, it was hard. It probably took several months. But taking those little trips, it really helped bring our family back together and try to figure out, you know, how are we gonna move forward from this?
And the other part that I don't think people understand is you're always worried it's gonna come back. Every time he has a sniffle, every time he goes, "Oh, my arm hurts," I'm like, "Oh, it's back." You know? And people, like, look at you and think you're nuts. I'm sure. And so, I'm sure you kind of felt the same way.

Joel
Yeah, I think so. But as you get further from it, I think it gets better and better.
What do y'all think? I mean, you know, you talked about the sniffles and stuff like that, but when you do come back to St. Jude now, how do you feel whenever you're back?

Jessica
It's like coming home. It really is. And that is the most bizarre thing to say, I realize that. But even on the way up here, I was telling Charlie's friend, I was like, this is like home for us because these people were with us and walked with us in these horrible times. And now we come back and now that the masks are gone, I can actually see the bottom part of their faces. And hugging people. And they're all remarking, "Charlie's huge. He's so tall, like, you know, he's so grown-up."

Joel
Well, and Charlie, after you've been through all this, what's life like for you now? Are there things you're looking forward to doing?

Charlie
Yeah. I'm just, you know, so excited. I do chess now. So I think it was like, two years ago I went to the chess state tournament and I had fun.

Joel
That's awesome.

Charlie
It's, you know, just trying to find the little things that I can do and just, you know, enjoying them as much as I can.

Jessica
He's in the Civil Air Patrol too, learning all about airplanes.

Joel
That's awesome.

Jessica
And going up in these airplanes, like our military airplanes. And Charlie has some ongoing health issues from cancer, from treatment, just from laying on a bed for a year, you know? So, but he's jumping hurdles just left, right and center, just incredible.

Joel
And how about you? Obviously, you're excited for the life he has ahead of him now. How does it feel, mom?

Jessica
For sure. Sometimes I have to kind of pinch myself, you know, like, we beat Ewing sarcoma. Ewing sarcoma, it's a monster, and it takes lives. And so many moms and dads that I've talked to, their kids are not doing well.
And I don't work full-time because of Charlie's ongoing appointments that he has and, you know, PT and OT and just different appointments with different types of doctors. And I also volunteer with St. Jude. I'm a mentor for new moms.

Joel
That's great.

Jessica
When new moms come in the door, I'm assigned ones with cases similar to Charlie and just calling them on the phone, emailing them, texting them, answering their questions, and letting them know that somebody gets it because I didn't have that. And so, telling these moms, "Hey, I know how it feels. I know if you wanna scream at me, if you wanna go hit something, let's go hit something together." You know? But just reassuring them. Even today, we met a new family upstairs and on the second floor, the Family Commons. It's the coolest place in the hospital.

Joel
It's pretty awesome.

Jessica
We got to hang out with a new family today. And just encouraging that mom, getting her contact information and saying, you know, I'm here for you. How can I listen to you? You know? So it's a blessing all around.

Joel
Charlie, how about you? Do you feel like your perspective has changed or that you've changed since you've been a patient here at St. Jude?

Charlie
Massively. You know, I love to advocate for St. Jude. Anytime they're like, "Hey, can you do this?" You know, we're like, "Yes, yes, yes." I talked to some moms and some kids myself, and I was just talking to them, saying, again, "I understand what you went through. I understand those feelings, and you're gonna get this. And it's only for a season. This is not forever."
Because I feel like when I went through this, me and my mom both felt that, you know, this is forever and it's gonna last forever. But to know that it is only a season and it does not last forever.
And I feel like just my perspective has changed on cancer because you flick through TV and you always see the cancer commercials for St. Jude or for some other hospital. And I just feel like, when I see them I'm like, "Yeah, I went through that and that's really cool." You know, what they went through.
And now we actually listen to them instead of just flicking through. Because she would tell me all the time, you know, about my aunt, her sister. And, you know, when the St. Jude commercial came on, we just keep going because, you know, it just felt like they just wanted to avoid St. Jude as much as possible.
So when I went through it and I survived it, I feel like for my mom and for my grandparents, it was just like a full healing circle. Because, you know, to understand that St. Jude, what they actually do, matters and that they're currently, you know, and actively researching, they want to make a cure.

Joel
Well, you give such a beautiful perspective and such a beautiful answer. And Charlie, we're just excited to see what you're gonna do.

Jessica
Well, he wants to think about being a researcher. We're supposed to have a meeting with a researcher, and Charlie has 15 questions he wants to ask the researcher. And so, he was talking about being a pilot, which he still may be a pilot, but now he's looking at pathology or, you know, researching. And his brother wants to be a pharmacist. And so, the other day he was saying, "Well, I could be a pathologist at St. Jude and you could work in the pharmacy and we could have lunch together."

Joel
Well, whether it's a pilot or a researcher, whatever you want to do, I know there are great things in your future, Charlie. So thank you all so much for taking time and sharing your story today.

Jessica
Thanks for having us. It's been great.

Joel
You heard Jessica talk about all the questions Charlie had for researchers. It turns out, he got to ask those questions inside one of the labs here at St. Jude. And if you missed seeing that on the Today Show, you can find a link to the video in the episode description.
Continuing research is one of the most important things we do at St. Jude. We like to say, “we won’t stop” – but that’s only because YOU keep us going. 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. I'm Joel Alsup, thanks for listening.

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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