An unassailable hope

Transcript:

Joel

Hi, I’m Joel Alsup and this is St. Jude Storied Lives. This podcast gives you the chance to learn about the life of someone who was a patient at St. Jude Children’s Research Hospital.  

Usually, that person is speaking for themselves. But today is different. Today I want you to meet Heather. She’s going to tell us about her son Corbin. He was first diagnosed with cancer when he was three. And he was cured of that cancer and went home to live his life as any kid would. Then at age 15, Corbin was diagnosed with a different type of cancer.  

Heather (intro clip)

Every stage, I think, every family, it's hard no matter what age your kid is, it's awful. The first time, you know, he would play in the playroom, we would get the news from the doctor, and I would come out and I would break it down into what a 3-year-old could understand and needed to know.   

And this time, I couldn't do that. He was sitting in the exam room and the doctor was looking into his eyes, and the doctor was talking to him. And so I wanted so badly to be able to take that for him.

Joel

Over the next few years, Corbin was diagnosed with two more different kinds of cancer. 

I’ve been a St. Jude patient, and I’ve known hundreds of other patients. And I’ve been a teenager. I know it would have been easy for Corbin to be bitter, to check out, to give up. Instead, he packed as much living as he could into every day he had, up until he passed away at the age of 18.  Heather is going to tell you all about that living Corbin did, and about her own story too.  

Heather

I grew up in north Louisiana, still live in north Louisiana, just a different corner of the state. And I teach my favorite subject, which is literature. I teach AP Literature to 12th graders and pre-AP English to sophomores. And I love my job. I have three children, Corbin, Nathan and Esther. And then, my husband, Clint, sells medical equipment. 

Joel

Talked about being a teacher. What inspired you to want to do that and how long have you been doing that? 

Heather

Well, I think what inspired me was being such a poor student myself in high school. (laughs) I think that's what gave me a heart for it. I remember at some point in college, I realized my potential and I thought, "Wow, I wish I had had encouragement earlier." I think I could have performed better academically than I did. And so, I have a way, I think, of making material understandable for students and I really enjoy doing that.  

And I love literature. Literature, to me, is, it's life, you know. So even though I'm teaching them writing and even though I'm teaching them to analyze poetry, we're really learning about life and talking about life. And so, I really enjoy that. 

Joel

That's a great way to approach it. That's amazing. So now I'm gonna take us back to when, gosh, really when we first met, been nearly 20 years ago now. 

Heather

Yes, I can't believe it, but it's true. 

Joel

Yeah. So that's when that St. Jude story began, this was back in 2005. You mentioned before your son, Corbin. How old was he in 2005 and what were some signs maybe something was different with Corbin? 

Heather 

Corbin was 3 years old in 2005. In fact, he had just turned 3 in February and there were no signs. He passed every well check with flying colors. He was a chubby little, agile, you know, precocious 3-year-old and just hit every milestone. And I'll never forget one ordinary Thursday morning, a couple months after his third birthday, it was in May, he came into our bedroom and Clint and I were sleeping late or trying to. 

Joel

I know how that feels. 

Heather

I think they sense it, you know? And he crawled in between us and asked his dad to scratch his back. And when Clint went to scratch his back, he found a knot kind of underneath Corbin's right shoulder blade and he knew it wasn't supposed to be there. So we took him in to our doctor still thinking it was probably nothing, and an X-ray revealed an aggressive tumor growing in his chest roughly the size of a baseball, and it was pressing against his lungs, his ribs and his spine and it was growing so aggressively that two of his little ribs had shifted to accommodate it. We were absolutely terrified, in complete shock. 

Joel

You get that news. How does the evolution come that you end up here at St. Jude? Was that pretty fast that all this happened? 

Heather

It was very fast. Our doctor said, "We are not wasting time around here." He said, "I can't tell you for sure what this is, but I know that it's very serious." And he said, "I'm going to send you to the best place in the world. I'm going to send you to St. Jude Children's Research Hospital." We didn't have any prior experience with St. Jude other than commercials, and to be quite honest, I would usually change the channel because they were so sad. So when he told us that we would be going to St. Jude, our first thought was, how expensive is this treatment going to be? 

Joel

Oh, gosh, yeah. 

Heather

Which I know sounds crazy, because obviously we would pay any price. We would sell everything. But we had no idea what St. Jude was, and our doctor said, "You will never see a bill from them." And I just remember immediately the sense of provision that that was, you know, the first sense we had that we were gonna be taken care of. And this was a Thursday. That Sunday, we packed up the car and loaded up our two boys. Corbin was three and Nathan was 4 months old. 

Joel

Oh, my gosh, yeah. A little overwhelming. 

Heather 

It was overwhelming. We packed them up. It was Mother's Day, Sunday. And we drove to this place that was completely unknown to us. 

Joel

So what was that like? What was your mindset like? You pull up to the gates of St. Jude and walk through those doors. 

Heather

It was surreal. I could not believe that this was happening. We told ourselves that it was a mistake, that once the doctors here saw Corbin, we would be told that it was benign, that it was just a mistake, and we would be sent back home. And that was kind of the world we lived in for as long as we could. Denial is such a great place to camp out sometimes.  

But I remember when we were checking in, the receptionist asked for Corbin's medical record number. And I didn't know what that was. We said, "What is that?" And we were looking through paperwork trying to find it and she said, "Oh, don't worry. You'll have it memorized before long." And I remember thinking, no, we won't. We're not going to be here long enough. And a few months later, you were interviewing Corbin and asked him for his name, and he gave you his medical record number. (laughs) He just rattled it right off. 

Joel

Yep. Those pop in your head – I’m 35 years out, still know it right off the top of my head. 

Heather

Yes, I'll never forget it. 

Joel

So yeah, I remember that, meeting Corbin for the first time, just a really talkative, amazing 3-year-old. What were his thoughts when he got to St. Jude? 

Heather

He was not completely oblivious to the serious nature. I think, we tried to keep him protected from it, but I think he could sense, you know, Mom and Dad were worried. But for the most part, you know, he just kind of knew that he had this bump on his back and that the doctors here were gonna give him some medicine to make it go away. So other than that, he kind of left that to us and he played in the playrooms, and he rode, back then there were tricycles. He was always after a tricycle. So that's the kind of world that it was to him. And then, every so often, he would have to get a medicine that made him sick and he dreaded that, but he kind of understood that it was part of the process that was gonna make him better. So he toughed it out. 

Joel

He was so great. I have vivid memories of him on that tricycle, some of my early memories of working here. It's like you talked about, you got here, you found out you're gonna be taken care of. What was, again, that official diagnosis and what did the care team here tell you the treatment plan was going to be? 

Heather 

Our doctor told us that Corbin had an aggressive cancer of the soft tissue called rhabdomyosarcoma. I had to write it down on a piece of paper and it took me a few days to be able to say it correctly, and that his treatment would last about a year. It would be chemotherapy, about five weeks of radiation and surgery to remove the tumor. But that if treatment went smoothly, his cure rate would be roughly 85% to 90% survival rate. And we were just shocked to hear her say those words. That was such a comfort, such a sense of hope that she gave us when she said those words. I remember understanding how lucky we were and understanding how thankful we should be. And also, at the same time, feeling like we could get through anything knowing that his survival rate was that high, we could get through anything that happened in the next year. 

And so, even the darkest days of treatment, the hardest days of treatment, we had this hope in front of us that pulled us through it. And we were able to picture Corbin, you know, at kindergarten graduation, Corbin being a big brother, Corbin going off to first grade and Corbin playing T-ball. I mean, we had all of these dreams that we would be able to live a normal life because of those words that she gave us, and we knew that those words were possible because of the breakthroughs in research that St. Jude had made and because of the compassionate people who give. And so, that link was always there from the beginning. 

Joel

And so, how did that treatment go? Was it pretty much as they told you it was going to be? 

Heather

We had some rough patches. He had an allergic reaction to one of his medicines. Of course, he lost his hair. That was tough for me, but it didn't phase him as a 3-year-old. 

Joel

He was a very cute bald kid. I was not. He was very cute. 

Heather

He was a cute bald kid. (laughs) I remember we were at the Ronald McDonald house, and we woke up one morning, and I had pulled Nathan into the bed with us and Corbin had climbed into bed with me, so we were all three in one bed. And I remember Corbin saying, he was just moving around so much and I said, "What are you doing, buddy?" And he said, "I've gotta get these spiderwebs off of Nathan." And I said, "What are you talking about?" And it was his hair. It had all just almost all shed, it seemed like, in one night and it was all over the pillow. And he said, "These spiderwebs, I have to get them off of Nathan." But just a couple little rough patches, but other than that, it went pretty smoothly. 

Joel

So y'all get to go back home. What was that time like? 

Heather

That was amazing. We went back home. Corbin was 4. Seeing his little cheeks fill back out and his energy come back and his color come back and his hair come back and just getting to see him enjoy life. And, you know, you come back for the checkups and you're anxious and nervous and every little bo-bo and every little complaint, you're nervous. But slowly, gradually, that fear kinda falls off and you begin to trust the waters and you begin to trust that you can live freely. And so, we had 12 years of pretty blissful remission honestly. It became a story that he told. It was kinda funny because even as a 4-year-old, he had heard us talk about it so many times, when someone would ask him about his cancer story, he would say, "It was an ordinary Thursday morning." (laughs) 

Joel

Sense of drama and flair. I love it. (laughs) 

Heather 

Exactly. Already. He could quote it almost. I don't know how much was his actual memory and how much was him just hearing me tell it. But yeah, so 12 blissful years.  

And during his treatment, I remember telling Clint, "I don't want anymore kids. This is too hard. You love them so much and it hurts too much." And then, I must have forgotten that I said that (laughs) because a few years after we had Nathan, Esther Gulde came along, and we had a little girl. And Corbin was such a great big brother. Even as a little kid, he was a great big brother. But as they grew and got older, he was protective, especially with Esther, just took great care of her. So it was a joy to get to watch him. 

Joel

Like you said, it was 12 blissful years, everything's back to normal life, families growing and everything. Then something else comes along. What were the symptoms that maybe something was up with Corbin again? 

Heather

Well, Corbin had started high school and we are off to a great start. He was running cross-country, made the cross-country team and he was taking AP classes that he was excited about. And then, he was still taking guitar lessons and playing guitar all the time to the point that when he started to have a burning pain in his right arm, I thought maybe it was overuse from playing so much guitar. 

Joel

Of course, yeah. 

Heather

And I remember asking my friend’s husband, was an orthopedic surgeon and she said, "Sure, that's quite possible." But the pain persisted, and it wouldn't let up. And so, we took him in and had an X-ray and it was just like this reliving our absolute worst nightmare.  

We were standing in front of an X-ray again and there was a tumor inside him aggressively growing, and this time it was bone cancer, so it was osteosarcoma and it was in his right arm. And I remember the doctor again saying, "We're just going to send you back to St. Jude." So at the same moment that we had this shock and this dread, we had this sense of peace because we knew where we were going this time and we knew what hope came with being at St. Jude. 

Joel

Yeah. Just to underscore it for our listeners, you said it so well. But yeah, this second cancer Corbin had was completely different than the first time. The first was rhabdomyosarcoma, osteosarcoma. 

Heather

It was a completely different, yeah. And this was not, you know, sometimes a patient will get a secondary cancer. This was another primary diagnosis, a completely different cancer, like you said. So we were astonished. And I think even our team, you know, our medical team was astonished because we came every year for our checkup and every year, you know, we got the green light. He's just doing great. So it came as a complete shock. 

Joel

Yeah. I can remember bumping into y'all in the hallway. just a couple days probably after you'd been back. And that clicked in my brain too because I was like, wait a second, this has been too long for them to be back just for a checkup. So right away, I felt the pit in my stomach too because I feel like he's – I’ve grown up with this kid. 

Heather 

Yeah, he's family. 

Joel

Yeah, he's definitely family. How was it different for Corbin the second time around? What was he most concerned about? 

Heather

It was very, very different for both of us. It's always hard, every stage, I think every family, it's hard no matter what age your kid is, it's awful. But I remember for me, having experienced it with a 3-year-old and then again with a 15-year-old, with a teenager, I think what was so different from the perspective of me, as a mother, the second time, was that the first time, you know, he would play in the playroom. We would go in. We would get the news from the doctor, and I would come out and I would break it down into what a 3-year-old could understand and needed to know, you know.  

And this time, I couldn't do that. He was sitting in the exam room and the doctor was looking into his eyes, and the doctor was talking to him and the doctor was saying these words to him. Cancer and possible amputation and surgery and hair loss and treatment. And all of these words were like bullets, and I couldn't get in front of them to shield him from them. And that, to me, was the worst part. I would think, "No, don't say that to him. Don't say that to him." And so, I wanted so badly to be able to take that for him. And so, just watching him digest the news himself. He asked all the questions. He handled it like such a pro, you know, but it was hard. 

 

His biggest concerns, I think, in order, were possibly losing his right arm and not being able to play guitar, and secondly losing his hair. This kid loved –  

Joel

Describe his hair. 

Heather

He had such a great head of hair. Every stage, no matter which Corbin it was, you know, he had such a great head of hair. In high school, he had let it get kind of long, so it was long and wavy and losing his hair was a big deal. And then, third, the possibility of dying. I think that's the order it went in for him.  

For me, it was a completely different order, but for him that was the order, you know, as a teenager, he was like, "I really want to be able to play guitar and I really don't want to lose my hair." (laughs) 

Joel

And just amazed too, I sat down with you and him when this happened the second time. He was 15, it would be so easy to be bitter and angry, but there was a grace and just understanding that came off of him that blew me away. 

Heather

Yeah. He always took it in stride, you know. And I remember, I would be the one in the parent room when he was in the next room getting his treatment. I would be the one, you know, just banging my fists on the floor and crying out to God and basically just pitching a fit, and he was always so cool, you know. He was always so cool.  

And sometimes I look back and think, was that for me that he felt like he had to be? I don't know, but he was. He just took it in stride. And there were some points that I think were tougher for him than others.  

I remember when his hair started coming out. We went to a salon downtown in Memphis when it was just me and him. We explained to her the situation, and she was trying so hard to help him keep just a little bit of hair, and so she was buzzing it. It's such a visual thing, the difference. You can almost pretend that it's not happening. You can almost go off campus and forget about it. But once you lose your hair, it's constantly this visual image of cancer because of the treatment. And I remember watching him look in the mirror and I remember he looked at her and he said, "Just shave it off. Just shave it off." We walked outside and he kinda stopped for a minute and put his hands on his knees and he bent over and he said, "Mom, that was so hard," he said, "but I had to do it. It had to be my decision, and I had to be the one to say it," and then we kinda laughed because he just looked at me and he said, "That was like killing Old Yeller." (laughs) And we laughed about it later but at that moment, it was really a hard thing for him to do, for him to say, "Just take it all off." 

Joel

Oh, my gosh. I understand. So obviously, treatment, not the easiest thing in the world to do, but again, this time around, it works again. Can you tell me what treatment entailed and what kind of surgery happened later as well? 

Heather

Yeah, treatment was so rough for osteosarcoma. So he had these chemos that he would take when we went inpatient and he would get so nauseous this time that it got to the point that he had anticipatory nausea, is what they called it. And it was basically that he wouldn't even have a chemo yet, wouldn't even have an IV hooked up, and he would start throwing up and he would just feel so nauseous, the smell of the floor cleaner or the sight of just being on the treatment floor. Everything he associated with it, he would get sick before he even got chemo.  

And so, we developed this routine where he would get in a wheelchair and he would put on his sleeping mask so he couldn't see anything. And I would have some kind of essential oil, some new fragrance, whatever the latest one that we hadn't tried yet and he would be sniffing it. And I would push him into the elevator and push him into the room, and we would just try to go as long as we could without any sensory idea of where he was or what was about to happen and trying to almost hide it from his senses as long as we could. And so, that's kinda how we got around that. 

But he went through chemotherapy for six months and the osteosarcoma, that was a tough diagnosis. The cure rate was not quite as high and with it being his second cancer, that was also tough. But they said, you know, that just because he had had cancer before, that wouldn't really affect his cure rate, and so, maybe we were looking at a 60% cure rate, which wasn't as high as we had had before, but we're very optimistic people. It's hard to keep us down. And so, we got our hopes up and we handled that well. 

I think the hardest part was a few weeks into treatment, when they set up an appointment with the genetics clinic, and you know, St. Jude between 2005 and when we were back in 2017, they had made so much progress in the world of genetics. And they had this whole new clinic and this whole new team. And I think going in and understanding that two different cancers in someone so young made them want to look at some sort of genetic link was very overwhelming and intimidating.  

And a few weeks later when the tests came back and it was positive, I think that, for me, was the absolute hardest. I just did not know how to process that. I didn't know how to frame it when you're told the words, "Your son is genetically pre-disposed to develop cancer" 

Joel

Yeah, that's heavy. 

Heather 

How do you step forward? And that's what was so hard because he was this kid who had so much talent and so much intellect and so much compassion, and he wanted to go out into the world and do something with it, you know.  

And you want your kid to be able to live out their dreams and you want them to be able to dream. And at the same time, you don't want them to face the disappointment that can come from dreaming beyond what their reality is. And so, it's like, how do you anchor your kid down? You know, that's really tough. So I think that was the hardest part was how do we move forward in the hope we were so used to living in at St. Jude, and at the same time, still remain realistic. 

Joel

It's so difficult. I know probably too, processing all this is incredibly tough. I see it from a parental perspective now because Corbin had the exact same type of cancer as me, the second time around, exact same place. But in the midst of some of this bad news, there was good news. He did still get to live out one of his dreams. I know for me at the time, with osteosarcoma back in the '80s, amputation was necessary. 

Heather

Absolutely. 

Joel

But for Corbin fortunately, and he was good with his right hand, I was not, fortunately there was a solution for him. 

Heather

Yes, that was incredible. I will never, as long as I live, get over the surgery that they did to spare his right arm. So in the years, yes, in the interim, St. Jude had pioneered this limb-sparing surgery. And so, when Corbin went in, rather than having his right arm amputated, his surgeon took out 15 centimeters of bone and replaced it with a titanium rod. And we didn't know, going into surgery, how much control he would have over his right hand and his right arm, as far as to be able to come out and play guitar. So when I walked into the recovery room to see him after surgery, I remember he greeted me with a thumbs up with his right hand and a big smile and it was just so exciting to think he would come out of that.  

And with some therapy, which St. Jude provided, I would say probably about three months after surgery, I'll never forget it. I was standing in our little apartment in Memphis, and I was standing at the sink in the kitchen doing the dishes. And I heard the song of his guitar just fit up the apartment and it was amazing. He was playing "Smooth Criminal" by Alien Ant Farm. And I just remember being so thankful. That was such a joyful sound. It was such a joyful moment. And then, I remember he started playing "Knockin' on Heaven's Door." And I asked him, "Please don't play that song. Find something else to play," because that was making me nervous. 

Joel

And so, I got to see the beauty of this, first-hand. We got to see him and his band play for our staff, which was amazing.  

What's it like, this cancer goes in remission, you go back home. But there's also the knowledge that you now have in the back of your head. What is life like as you adjust and go back home. How do you handle it? How does Corbin handle it? 

Heather

Yeah. We made the conscious decision, and I think, you know, Corbin was definitely the leader on this. he kind of, you know, whereas when he was 3, we took the lead on the positivity and on how to look on the bright side. We weren't really sure how to navigate this and Corbin definitely led us through it. And in that, you know, our son taught us how to live. Because honestly, I don't think that hope, I don't think that it's just a means to an end. I think it's a way of life. And that's what Corbin taught me, that hope is a way to live, not just a means to survival, but a way to approach life. And so, he lived that way. And so, we kind of learned that by watching him.  

He lost friends at St. Jude. It's hard to come out of treatment without losing people that you love, that you care for. And I think maybe down inside in his heart, I think he realized that there were kids who didn't get to live and he did, so every day was a gift. And I don't think he wanted to ever be accused of not living life to the fullest when there were people he had cared or who didn't get that, you know. So he kind of looked at life that way. That boy, I don't think he ever woke up a single morning and didn't live his day to its fullest possible potential. 

Joel

So what, as far as care from St. Jude, once they found out about this predisposition, how were they monitoring you guys and taking care of Corbin? 

Heather 

It was immediate. We were nervous. We were worried. We were trying to figure out how to handle it and St. Jude came alongside us and said, "Here's what we're going to do. We're going to provide regular surveillance so that if anything shows up, we will catch it early while it's still more easily treatable." And that was a huge comfort. That was a huge sense of security for us to be able to kind of relax and move forward, because we knew that we were gonna go in for scans and if there was something there, they would catch it. He went back to school after the osteosarcoma and he started a garage band and they were playing, it was a lot of Weezer, lot of Weezer. 

Joel

That's what garage bands are for, you gotta play some Weezer. (laughs) 

Heather

That's what garage bands were for. So Weezer, Guns N' Roses, that was really fun. And then, at school, he was right back into his classes, right back hanging out with his friends. And something new that he started was he joined the mock trial team. He absolutely loved it and then he developed such a passion for it. And I remember he even wrote a research paper on wrongful convictions. And there was something about wrongful imprisonment that resonated with him having been in the hospital, you know, looking at his phone while his friends were at the beach, or looking at his phone while his friends were at a party or while they were doing funny things in class, and cancer is a sort of a prison, and feeling like it was something he didn't deserve, you know. And that resonated with him so strongly that that was where he developed this passion for the law, and he wanted to be a defense attorney. And to me, that was such a Corbin thing, you know, because he was such a compassionate person. 

You know, if we were at St. Jude in a waiting room, it was the most phenomenal thing to me. Kids would just come up to him. I don't know if it was because he was a teenager and there weren't too many of those around, and maybe that made him cool or something. But they would just come up and say, "Will you play with me? Will you watch me play my video game?" I remember one time coming back from the restroom and he was sitting on the couch, I said, "What are you doing?" And he said, "I'm watching him playing his game. What does it look like I'm doing?" And he would. He would say, "Sure, I'll play with you" and he would put puzzles together with them, and he called them little buddies. And sometimes he called them little Corbins. He would say, "Look at that little Corbin," because he had been here when he was 3. And he just had such a heart for the kids coming after him too, so that was something else that he had such a compassion for. 

Joel

That's amazing. That's amazing. And so, I know things were going okay for a little while, but then spring of junior year, I think, is one of those routine screenings –  

Heather

Yes, that's exactly right. 

Joel

 – caught something. What happened then? 

Heather

Yes. Spring of his junior year, one of those screenings caught lymphoma. It was in his lungs, and we joined yet another clinic. I think we may have been in every clinic at St. Jude. But we joined the leukemia clinic, and we got some new faces added to our team. And our leukemia doctor became our primary care doctor. And honestly, just family. He was such an encouragement to us, and he and Corbin became really close. And I just remember him working so hard for Corbin because at this point, Corbin was not an easy patient.  

And I remember wondering in the back of my mind, is St. Jude going to give up on him? Are they going to say he's a lost cause? It's not really worth the effort and the medicine? But they never, ever said that, honestly they never said that. And so, our doctor tirelessly designed a lymphoma treatment. It wasn't, you know, the ordinary treatment you would give a patient with lymphoma. It was designed for Corbin because he was very sensitive to the chemo because of his pre-disposition.  

And so, he did go almost immediately under remission with treatment. And so, he was again, right back at school. We were very thankful for both the surveillance that caught it and the treatment that put him in remission. 

Joel

That's just amazing to hear and I remember seeing you guys back and forth through all of this, and again, the attitude that Corbin kept just floored me. He was just phenomenal through all of this. And even despite all this predisposition everything, that positivity, like I said, just amazed me. But again, get back home, get back to normal life for a little bit. 

Heather 

Yeah, he started his senior year of high school and everything was going so well. He was again, on the mock trial team. He was very involved in choir at school. Just a lot of close friends who had stuck with him and a girlfriend that he really had become, like his best friend. The two of them were two peas in a pod, just very close, a lot of the same interests. And so, things were going really great.  

And then, in January, one evening he started running fever. And we thought honestly that he probably had the flu. And so, my husband took him to the hospital in Shreveport, and I remember I was home with Nathan and Esther, with our other two kids, and we are getting ready to eat dinner. And I remember Clint called and he said, "Hey," he said, "They ran some tests," and he said, "Corbin has leukemia."  

And I remember just again, being in complete shock. It's almost like as soon as we let ourselves relax and we're living and things were going well again, we would get the news, you know. So it's like, it almost trains you to be in the stage of hypervigilance, you know.

And so, I remember we got off the phone. I'll tell you this story. I don't tell this to very many people but now I'm telling it to everyone. 

Joel

There you go. 

Heather

But I remember we were just about to ask the blessing for the food and Nathan was gonna pray, and I said, "Nathan, why don't you go ahead and pray and just pray for your brother?" And he said, "Yes, ma'am." And so, we bowed our heads and Nathan said, "God, we have learned to trust you and we do. We trust you. But sh**, God, this is my brother." (laughs) 

I remember my eyes popped open and I said, "Nathan, in the prayer? You're gonna say that in the prayer?" And he said, "Mom, our pastor said that God can handle our profanity." And I was like, "I don't think that's what he meant." That was his true feelings in the moment. 

Joel

It's genuine, for sure. 

Heather

And so, I loaded Nathan and Esther up and we came to St. Jude and met them. And at that time, Corbin was on the second floor and our doctor was with him and he was trying to get a treatment together. But it wasn't an easily treatable leukemia. It was a treatment-induced leukemia. They even talked about how smart it was as a cancer, how it was almost because it was born of chemo, it was smart enough to evade chemo.  

And so, it was really scary and I remember this was the point where hospice joined our team, and I resisted that. I did not want anything to do with hospice. I don't think I was ready for them to be a part of our team. But of course, as soon as they came on board, they were just amazing and I loved them. And I hate to keep cursing, but honestly, they were the most badass team at St. Jude. 

Joel

They are. They're amazing. 

Heather

When they came on board, they were just like, "Look, we're not about death. We're about quality of life and we're about making sure that he has the best life possible." And St. Jude's always been that way. It wasn't survival alone, it was living. And so, that's what hospice was about. And I think once we understood that we were so grateful to have them on board and they became the team that we called if anything went wrong or if there was a question, and they just took such great care of Corbin.  

But in addition to the leukemia, he was running that high fever and he developed pneumonia. In hindsight, because this was January 2020, we wonder if he didn't have COVID and even his doctor has said that that's highly possible, because it was just becoming something that people were concerned about. And so, we were moved to ICU. He needed oxygen support to breathe. We honestly, you know, our team did not know if he would make it out of the ICU. Remission would be an absolute miracle.  

So that was January, February rolled around. We celebrated his 18th birthday in ICU, even though he didn't want to. He said, "Do not celebrate because I am going to get out of here and we're gonna celebrate when I get out." But that didn't stop anyone. His nurses bought him lottery tickets and it was wild. 

Joel

That's a great 18th-birthday gift. 

Heather 

It was a wild 18th birthday party. But he, you know, one day, he would be sitting up in bed and that was his goal for the day, and the next day it would be to sit up in the chair, and then it was, if I can just sit in the chair for an hour.  

And this is where we talked about what we were gonna do when we got out, and he always wanted to go to Alaska. And he said, "Alaska is the most beautiful place on earth." So we sat there and we looked at pictures of Alaska and we planned this trip to Alaska. And I remember half of me was thinking we really are going to do this, and half of me was thinking, I don't know if we're ever really gonna get to do this.  

And, you know, the next day, he would be trying to walk to the door and walk back to the bed and he would see how long he could breathe 

 off of oxygen, but it was just like this marathon of every day, he would take another step and soon he was walking to the nurse's station, you know. And soon, we were walking out to the breezeway and he was sitting at the window. And soon, the therapy dogs got to come visit. He loved dogs. And so, the therapy dogs got to some visit. That was such a treat. And gradually, after 40 days in the ICU, he packed up and walked out the doors. And we came back and they did scans and he was in remission.  

Remission from that tough, tough leukemia. That was a miracle. And I look back on how many miracles he experienced in his life because of St. Jude and it was amazing. 

Joel

And I know, you know, as a parent, it's gotta hit hard, you know, four times now. How did you and Clint handle that with Corbin as far as, I know you were planning the trip to Alaska. Were there any other things you did with him to kinda help him cope or maybe to get to do some more grownup things because he had been through so much? 

Heather

I know. I wish I could say again that I was this great mom and that I led him through it, you know, but it was him leading us at that point. He was so strong and so resilient. And I remember feeling a little bitterness. I remember watching him get knocked down and pick himself back up and get knocked down and pick himself back up. And, you know, you watch your kid do that so many times and it's hard not to be angry. 

Joel

No, for sure. 

Heather

But he always showed us how to live. We would go for walks in the park. We ended up getting a puppy and he still, you know, was playing his guitar. And then, the weekend of July 4^th – so he spent his birthday in ICU. He got out of ICU sometime around the end of February, spring of 2020 and then went into remission.  

And then in July, it was the weekend of July 4th, we were taking the puppy to the park and walking him around the pond. And I remember we got back in the car, and we were talking about where we were gonna go to get ice cream or something and our doctor called. 

And our precious doctor, who was supposed to be on his vacation, he was not even at the hospital. He was on a trip. He was checking Corbin's results from his bone marrow aspirate. And he called us to tell us, and I remember, I put the phone on speakerphone, and he was talking directly to Corbin but we were all listening, all five of us were in the car. And I remember him saying, "Your leukemia has returned." And he said, "At this point, we're out of treatment options." And he said, "We're gonna talk about, you know, what it is that you want to do next."  

And Corbin said, it had almost become a refrain at this point because I had heard him say it several times, but he said, "You know that I'm not afraid to die. I am not afraid to die." And he said, "And I am prepared." He said, "But I will not die in a hospital. I do not want to die in a hospital." He said, "I've spent enough time there." He said, "I want to go home." And I remember our doctor said, "Well, I'm gonna relay that to the hospice team." And our hospice nurse called and she was so cool. And Corbin repeated those words to her and she said, "We are going to try like hell to make that happen." 

And so, I remember we packed up and St. Jude got us set up at home with a home hospice team who came out to the house and took care of Corbin. And he got blood transfusions and at this point, I think he was getting blood, which he relied on to live, about every two weeks. And he was on an oral chemo that wasn't very aggressive. It was certainly not going to put him in remission or cure him, but it would hopefully hold the cancer at bay long enough for him to have a few more months of life, maybe a year, but a few more months of life.  

And Corbin is now 18 and this kid, he got a job at the DA’s office. 

Joel

I remember hearing about this. 

Heather

He wanted to learn about the law, and he wanted to help people and he wanted to continue to better himself as a person. He did speaking engagements for St. Jude. Now this was the COVID era where we didn't do them in person, but he did them virtually.  

And so, he would share his story virtually and it was really, really powerful to watch him tell a group of people that he knew he didn't have much time left, but he was so thankful for the days St. Jude had given him, and he wanted to share his story so that he could pass that hope on to kids coming after him because he knew how powerful it was. 

And then, of course, the garage band ever lived in the garage. And so, they were playing music and he never stopped making music. It was such a powerful therapy for him. It was such a powerful outlet for him. And that's what he did with his days, you know.  

And we didn't tell very many people that we didn't know how much time he had left because he didn't want to make people sad. So only a very few people knew. His blood transfusions gradually got closer together and soon he was having to go to the hospital and get blood every two days. And he began to see that it just wasn't lasting as long.  

And he sat me down again, he was the parent and I had become the kid. And I'll never forget him sitting me down and saying, "Mom, I know you don't want to, but it's time. We're going to have to have this talk." And he said, "I'm gonna stop the blood." He said, "I'm gonna let the team know that it's time to stop." And he said, "I know that it's brave to fight, but it's also brave to stop fighting when it's clearly become futile."  

And I remember looking at him and saying, "But Corbin, I don't know how I'm gonna live without you." And he said, "Mom, you won't be living without me." And he said, we had watched "Interstellar" very recently because all the Christopher Nolan movies were our favorites. And so, he perfectly quoted Matthew McConaughey, and he said, "Remember Mom, love is the one thing we're capable of perceiving that transcends time and space." And I just thought that as the most awesome thing I'd ever heard. 

And we called his hospice team and told them and told his doctor. And his grandparents came. Our pastor came. His Sunday school teacher that he was very close with came. His girlfriend came over. He spent time with all of them and said goodbye to all of them. And I remember his girlfriend left about 11 o’clock that night and she was coming back the next morning.  

And that night, I tucked him in on the couch in the living room, that is where he wanted to sleep, and I had dragged the recliner across the living room and put it as close to him as I could get it. And I told him I loved him, and he said he loved me. And I went to sleep beside him, and he closed his eyes and he let go of us.  

And, you know, I really think that what he said was so true, that love does transcend time and space because I still feel him with me.  

And he had planned his own funeral. He had made all of his own end-of-life decisions. I remember sitting next to him as he made all of these decisions and it was hard, but also I was just so proud of him. And the Avett Brothers out in North Carolina recorded a song that he especially loved for his funeral to be played there. And his beloved doctor came and spoke and got to share with, you know, all of our friends and family, what he was like on the campus of St. Jude, because I think it was a different side of him than people back home got to see. I don't know that they really got to see how brave he was and how compassionate he was and what a heart he had for the kids coming behind him.  

So our doctor got to share that and it was an incredibly beautiful service. And now, you know, I think in a way, as long as we share his story and continue his compassion and his hope, I think he is still alive in a way. And I think we do experience his presence in a way. 

Joel

Absolutely. Absolutely. I want to take you back to one thing too that was a powerful story I heard about, about that decorating for his graduation party and you guys putting some, can you tell me about that moment and what that was like for you all? 

Heather 

Yeah. So his high school graduation was delayed because of COVID. And so, his graduation ceremony was in July, and I remember we were decorating the house for his graduation party and he was sitting beside me in the dining room. And I had made, it's such a cheesy mom thing, but I had made this banner that had pictures of him. And I was stringing it across the dining room. And on the banner was every little Corbin. It was 2-year-old Corbin, kindergarten Corbin, seventh-grade Corbin, it was high school Corbin, Corbin at every single year, every single stage.  

And I remember I was stringing them up and I tried not to ever cry in front of him, really from the time he was 3, I tried really hard not to cry in front of him because I didn't want him to think that I had lost hope ever. I wanted to be strong for him. But this was just one of those few moments where I think I was mourning every little Corbin and I started to cry.  

And I remember he was watching me and he said that it wasn't like that for him, that he was mourning. But he was mourning, not the years he had lived, he was thankful for them. He was mourning the years he would not get to live. And in his mind, his best years were in front of him. And he was understanding that he would never get to go to college. His friends were decorating their dorm rooms and he didn't begrudge them that, but it was this understanding, this realization that that was something he would not get to do. He would never get to go to law school. He would never get to become a defense attorney. He was crazy about his girlfriend. I think he thought that they would get married one day. And he wanted to get married, and he wanted to be a dad. He loved kids. He looked forward to being a dad one day.  

And it was just all of these dreams, you know, that along the way, he was letting go of, one of a time. And I think that if anything, that's what Corbin mourned. He didn't spend a lot of time feeling sorry for himself or in self-pity, but I think he experienced some sadness that he wouldn't be able to live these future years and do all of these exciting things that he dreamed of doing. 

He was gonna go to LSU and he was gonna go to law school, and he was still gonna have a band with other lawyers called Habeas Corpus. (laughs) 

Joel

Perfect. Perfect. 

Heather

He had it all planned out. And I think, you know, as hard as letting go of us was, as hard as letting go of his childhood was, I think letting go of his future was probably the absolute hardest thing. To say, "I never will" is hard. 

Joel

And just again, as hard as it was, still incredibly mature of him to see that from that viewpoint is phenomenal. I know it's been a few years now since he passed. I remember that moment forever in my brain.  

For you, how has that been? 

Heather

You remember because you were the one of the people he asked to see by name. I said, "What do you want to do? What are some the last things you want to do before we leave Memphis?" I want to see Joel.  

Yeah. I think that where the bitterness crept in for me was after he was gone. I just could not believe he was gone. And he was such a huge presence that his absence was monumental. And it was a long time really before I think I can say that I was able to let go of the bitterness. It took me a really long time. I think I felt like as mother, you know, what kind of mother moves forward? What kind of mother lives life after losing their child? And I think also, you know, it just felt like to experience a moment of laughter unguarded, or to experience a moment of happiness or gratitude, felt like a betrayal in a way. 

And I think the thing that helped me move forward again, was Corbin, because he had voiced to us that that was his only concern in those last days. I remember we were sitting on the patio one evening and he said, "Mom, I have something I need to say to you." He said, "I'm worried that you're not going to be able to live a full life after I'm gone." And he said, "That bothers me because I want you to." And he said, "And the thing is, I'm such an awesome son." (laughs) And it's so like him to make me laugh in the middle of something sad. But he said, "I think it's just gonna be really hard for you," and he said, "and I don't want it to be." He said, "I want you to live a full life."  

And so, I think about that a lot. I think about how he lost people he loved and it didn't stop him from living, because he felt like he should since they couldn't. And I thought that I need to do that too. I need to move forward because that's what he would want me to do. 

And I think another thing that was so hard, you know, people say you can't be friends with your kid. I think that's so sad. 

Joel

Yeah, no, you can. 

Heather

That's such a sad way. I think when they say it, they mean you can't be their friend instead of their parent. But you can be both. And I think being Corbin's mother was a privilege, but being best friends with him was a great joy. Laughing with him, watching our TV shows together. 

You know, I think all of us in the family felt like, he had a way of making you feel like he was your best friend, so I think he had a bunch of best friends, but I always certainly did. And so, I think it’s just that I miss him terribly and it creeps up on me and hits me, you know, sometimes. We were just recently packing to go to the beach, and I was packing groceries to take. And it just hit me out of nowhere, you know, how can you be packing to go on a trip and looking forward to it without Corbin? And so, I got a little down about it and Esther said, "Mom," she said, "You have to remember, he's going with us. He's with us." And I thought, you're right, he is. 

Joel

That's been the amazing thing I see as well, just see now the influence, even though it's not the direct, same feel, the influence he continues to have on his younger siblings. Can you tell us about them and what they're doing now? 

Heather 

Absolutely. So Nathan is 19 and he's at LSU where Corbin wanted to go, and he's majoring in civil engineering. He's always been a builder, always been an inventor and always loved taking things apart and figuring out how they work and putting them back together, so he's living his best life. And Esther is, this is the summer before her junior year of high school, so she's about to start 11th grade. And she's on the dance team and she's taking these AP classes and she's just so grown up.  

And both of them are so like him in so many ways. I can tell what an influential big brother he was. And they miss him but at the same time, you know, they're so grateful for the years that we were given, thanks to St. Jude, that they both, in their own ways, have shared his story and raised funds for the hospital and continue to do that because through his experience, they developed such a passion for it. 

Joel

And for you personally, I know you're teaching kids who are the same age when this happened with Corbin. Does it make you look at them differently as you're teaching these young? 

Heather

Yes, absolutely. You know, we’ll will be reading a poem or reading a short story and I'll just share something with them that I learned from Corbin. But I tell them, "My son walked across the stage at his high school graduation knowing he was about to die." That is such unique experience, and so I just encourage them to live every day to the fullest, you know, and to be kind and to be compassionate and to help others when they have a chance to, because that is something that has eternal value. That's something that lasts forever, you know.  

The things that they worry about are gonna come and go and, you know, homecoming and what you're gonna wear to school. That stuff's gonna come and go. But when we read literature and we explore ideas of hope, ideas of courage, ideas of justice, those ideas are forever. 

Joel

And what's it like for you? I know you talk for us a whole lot, you still continue to share Corbin's story. What's it like for you as you come back to St. Jude now? 

Heather

I love coming back here. I never turn down a chance to get to come back here. I invent reasons to come back here. We come every year for the marathon and run through the gates and through the campus, and there are a lot of memories here. Our experience, you know, spanned 18 years.  

But there are a lot of good memories too and a lot of connections with people who played very important roles in our lives and became like family. And so, this place to us is a second home and any time that I get to come back here, it's honestly really a joyful experience. And any time I get to share Corbin's story, I'm living out what he asked me to do and that gives me such a sense of purpose, even beyond his life. And so, that's something that's therapeutic, in a sense, as well. 

Joel

And how do you want us to think about Corbin now? 

Heather

I think that when people think of Corbin, I would want them to think of a resilient hope, a hope that was unassailable in spite of the most insurmountable odds, a hope that facilitated laughter, that facilitated courage and boldness, that facilitated compassion when the temptation was to be bitter and self-absorbed, and a hope that facilitated freedom, just an ability to live freely and fully and joyfully.  

And I think that there's a strength there that I want people to think of, and also love because it's what connects us all in the end. And I think he was so right about that. 

Joel

Only thing I can say is thank you for taking time to share this story and most of all, thank you for sharing Corbin with us. 

Heather 

Thank you.

Joel

Corbin’s life was too short, but his way of living endures. The strength of his character was such that so many who knew him feel that he lives on, still. His perspective and his words come to mind when there’s a need for direction, for an unassailable hope. We can’t forget him, because he’s never left our hearts. 

You heard Heather say how important it is to her, to tell Corbin’s story, as a way of honoring what he asked her to do, in his last days. Telling the story is one part. The other part is hearing Corbin’s story. And I’m grateful to you for doing that today. Thank you for listening.  

 

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 family’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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