What Resilience Means

Episode 1: What Resilience Means 

What does resilience mean when a child is sick? Clay Culp, Janet Sellers, and parent Sara Lohse talk about resilience, or the ability to bounce back, when a child has a serious illness. Sara says “resilient” is the last thing she felt as her family navigated her daughter Madi’s cancer diagnosis and treatment. She shares one of the hardest moments their family experienced. The group talks about how resilience can mean acceptance and taking the next step.

A special thank you to our host Clay Culp, senior social worker at St. Jude; Janet Sellers, manager of the St. Jude Staff Resilience Center; and parent Sara Lohse.

Learn more about Madi’s diagnosis of acute myeloid leukemia (AML) and emotional support and daily life on Together by St. Jude™.

This episode was recorded April 24, 2025.

The book that Sara references in the episode is It’s Not Supposed to Be This Way by Lysa TerKeurst.

St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode Transcript

NARRATOR: A child's diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child's diagnosis and treatment. St. Jude Children's Research Hospital brings you Caregiver SHARE, a St. Jude podcast. Share stands for support, honor, advise, reflect, encourage. In this series, you'll hear stories and insights directly from the experiences of St. Jude families and care providers.

CLAY CULP: Resilience is a term that comes up a lot when a child is sick, but what is it that actually helps families be resilient? I'm Clay Culp, a senior social worker at St. Jude Children's Research Hospital. In this episode of Caregiver Share, a St. Jude podcast, I'm talking with caregiver Sara Lohse and resilience expert Janet Sellers. About having resilience as your child goes through serious illness. Janet, can you introduce yourself?

JANET SELLERS: Sure. I'm Janet Sellers, manager of the Resilience Center at St. Jude, and this topic is important to me because I know that deep down we are all inherently resilient. We come to this time and place having navigated the ups and downs of our life and knowing that we can be intentional about practicing resilience and further strengthening. That important muscle. So resilience involves vulnerability, acceptance, and seeking support.

CLAY: Sara, could you introduce yourself and tell us a little bit about your journey?

SARA LOHSE: Sure. So my daughter Madeline was diagnosed with acute myeloid leukemia in January of 2020. She was presented just with some regular cold symptoms. So we kind of brought her back and forth to the doctor. And we went from cold to, I'm really sorry, your child has cancer in the same day. And it obviously was very traumatic. And with that cancer diagnosis also came and you're moving out of state for the next six to nine months to go fight for her life. And as you can imagine, with that news was very traumatic. For our family. And it was hard. It was hard not just to receive that news, but then to have to leave at a moment's notice. And it definitely shattered our family. And it set a journey ahead of us that was life-changing. But today, Madi is 15. She is a freshman in high school. And if you looked at her, you would never know that she was sick. She is healthy. She is thriving. And she is truly living every parent's dream for what they would want their child to be. And I'm so proud to be her mom and to look at her.

CLAY: Wow. Talk about resilience. I'm excited to hear more of your story and get that out to our listeners today. But before we do, let's talk a little bit about what resilience actually is. I find that it can be hard to put a label on it or to put words to it exactly, but we're going to try. So, Janet, maybe start with you. How would you describe resilience?

JANET: Sure. I think of resilience as... The opportunity to acknowledge the struggle and discover tools to help. So resilience isn't about saying that something isn't good and calling it good, right? It's not making everything positive or everything okay, but it's recognizing this is difficult and what's my next intentional step. This is hard. This is not what I want. And what can I choose now? What can I do now? How can I move forward? And it's that intentional choice, even when things... Aren't so good.

SARA: That's really good, Janet, because I felt like when Madi was diagnosed, I felt like our whole world was just turned upside down, right? And I wasn't thinking of being strong. I wasn't thinking of, wow, we're just really ready for this fight. And I felt like people kept saying things like, Madi such a fighter. You guys are so strong. But I didn't feel that. I felt... Broken. I didn't know which way was up. I felt like I had been knocked down. And we were, I mean, for me and my family, I felt like we were operating from a place of brokenness and unfamiliarity. And I liked... Control. And I felt like things were out of control. And when we got to the hospital, I remember Brandon looking at me thinking, you know, I think he just didn't really know what to say. My husband, Brandon, are you ready for this? And I felt like I just wanted to just smack him because I think he was just saying that just like, I don't know. You know, I think that we just didn't know what to say. We didn't know what emotions to have, you know? And I just, I didn't want to be there. I didn't want my kid to have cancer.

CLAY: Well, Sara, you said something a second ago about felt like we were broken. And when I think about resilience, I'm kind of thinking, what is our stance to life when we're in that broken place? Sort of a way of approaching ourselves, the people around us, and the suffering that we're experiencing. I'm kind of curious about what some of those things are that help in the moment, like even in that moment when you're facing that? What were some of the things that you did to kind of tap into that resilience?

SARA: That's a really good question because I don't think that you're really thinking that in the moment, right? You're really in survival mode. You really go from feeling like a victim of something that just really hard happened to you to one step at a time, eat, breathe, sleep. Everything that I'm doing right now is to fight for my child's life. And so you're not really thinking of yourself and you're not really thinking of how can I grow stronger. You're really just trying to grasp every daily move one step at a time. And I think that the number one thing that I really wanted to do was just isolate and be by myself. And I really had to force myself to, first of all, accept help and learn to speak up and advocate for myself. And That meant allowing others to make meals for my family, accept help when I really wanted to just do it all on my own. And I learned to just be, you know, kind of like we were already, you and I have kind of talked a little bit already before the recording about just learning how humbling it was to be blessable. And that was really hard for me. I really just wanted to do it all on my own. And I just couldn't be everywhere all at once. And that really, I had to really learn to rely on the strength of others around me. And because I was out of state, I had to rely on families back at home.

JANET: There's so much of what you said, I think, underscores what resilience can look like, right? That You don't always recognize it in the moment. You didn't see yourself as being resilient. You just saw yourself as taking the next step and eating and sleeping and breathing. Simple things, right? But those underscore what it can mean to be resilient, what it might look like. It doesn't have to be something grand and big, but just showing up and just being there. And I think it really also underscores that even in our weakest moments when life is dust and we feel shattered, we can be strong in those moments and strength can look like just showing up. Resilient strength can look like just breathing, just taking care of ourselves and being there. And so even in the midst of dust, there's strength and power in that resilience.

CLAY: You know, I also am struck by this idea that resilience isn't just about what's inside of us, it's Also, this, it's something we do with others, actually.

JANET: Yeah, I think resilience is something that we can demonstrate and take care of ourselves, but we can also see the strength and resilience in others that then becomes an inspiration to us. And whether that's your child that you're caring for, that you want to be a strong role model for, but then also they probably, Madi probably, had examples in times when she was resilient and you were struck. Taken by that.

SARA: Oh man. I mean, I feel like the simple mind of a child and is so like, I feel like I was just a wreck all the time. And there was just a day where we had, you know, come into the hospital and I think they had changed an entrance or something simple. And we really got into the comfort of routine and there was so much safety in routine. And I think that this particular day, this entrance was closed and we checked in at a different table and I cried. And it was so silly, but that's how maxed out I was. And here's Madi weak and beat up in a wheelchair from all of the treatments. And she looked at me and thought. Why are you crying, mom? It's just a different entrance. Let's check in over there. And I remember thinking, I don't know why I'm crying. I think I'm just so maxed out. And to see just the resiliency and the tenacity of my child to always just take things as they came. And she never seemed overwhelmed, but yet I always felt like I was operating out of just, you know, at a base level. And she always was up for the next thing. She always was up to do something that was fun. And I just, the tenacity and the resiliency of kids really just taught me to keep things simple, to truly just take things in that day for that day. She never really got too far ahead of herself. And someone gave me the advice one day of, Sara, how would you eat an elephant? Meaning like something so big, right? One bite at a time. And I remember thinking, you're right. I could get myself so far out of something that I really have no control over. But if I just take everything moment by moment, just like Madi did, in these silly moments, I look back on that moment of just this entrance moment of going to the hospital really taught me something. So I keep it simple.

CLAY: I love that example. I mean, you talked about her tenacity. So there is this way, at least to me, in which she was a fighter. But at the same time, you're kind of highlighting something different than that as well. Like we talked about a little bit as I was getting to know you, this idea of surrender in the fight, this idea of allowing things to be as they are. And somehow when you told that story about Madi and... Just her going with the flow, even as things happened that were unexpected, it reminded me of that idea of surrender in the fight.

JANET: Well, and resilience can mean acceptance without agreement.

SARA: Yeah. Right.

JANET: So having a child with a cancer diagnosis and going through treatment doesn't mean you have to like it or welcome it or certainly want it. But being resilient, being able to accept it and say, this is where we are and this is how I'm going to show up. And this is how I want to be for my child. This is what I want them to see in me. This is who I want to be. That idea of acceptance or surrender, as you so beautifully said, Sara.

SARA: Yeah. I mean, there were so many times where I knew that I couldn't control the outcome, the ultimate outcome of this journey, but I could control how we were going to do this journey. And I really wanted to be an example of Madi, to Madi but yet it was amazing how much Madi taught me too. And there's so many times where I would just sit there and think, how do I want to do this? How do I want Madi to look back and remember our time here, no matter how much time that we had? And I'm so thankful because Madi remembers the good and the fun. She doesn't remember a lot about the treatment. She remembers the... 1,000 card games that we played, the makeover parties, the movies, the zoo, all of the fun memories. And I'm so thankful for that. But I also am thankful for the times that I had to really consciously decide that I was going to put away just really, I could feed my mind and my mental health. Reading, reading. And learning and growing in other things. And that's good, right? There was times where I should be learning and growing in maybe her diagnosis and learning medical journals and learning and growing in that area. But there was times where I really needed to set that aside and spend time with my child. And there was times where I needed to just figure out what was feeding my peace, what was feeding our joy. What was giving me a time to just breathe and enjoy the moment? What was feeding my fear and making me more anxious and really trying to control the situation? And so I had to kind of take captive of my mind and my mental health. And we've kind of already kind of discussed a little bit about taking time with taking a walk and just. Whatever feeds your peace in that moment. And that looked different in the beginning, in the middle, and towards the end of our journey. And in the beginning. It was really just laying there.

JANET: Well, and that's such a good point because resilience is flexible, right? What works at the beginning of a journey might not be the resilient strategies you need in the middle or even at the end. So there's availability to change what you need along the way. And there's not one way to do it, right? Being able to take a walk might be what you need, but you might also just need to phone a friend, have a conversation, take a breath. Talk to a professional. Be a part of a support group. There's no one way to do it. The important thing is to recognize, whoa, I need to do something right now.

SARA: I'm sorry, I was just going to say too, like one thing that's really important and I didn't and I had to learn how to do it is have grace for myself. I just felt like I didn't feel like I was enough a lot of times. I didn't feel like I was qualified. I did not. There was a lot that I had to learn. And there was a lot of guilt and shame. And I remember our doctor, one of the first things that she said when we got to the hospital was, this is not your fault. I was Madi's mom. And I felt like, what did I do that made, you know, that got us to the hospital? And she said, this is not your fault. And that right there, those words released a lot of guilt because I was supposed to be there to protect Madi. Why were we at the hospital? And Part of being resilient was releasing any type of anything that would waste my mental energy, right? I needed to put that towards Madi and lighten the situation and make our journey healthy and good. And so just having grace for those areas to kind of cushion that and know that I wasn't going to be productive like I would be on a normal day at home. And to just... Have some patience and grace for myself and the situation and kind of trust the process.

JANET: Yeah. Resilience isn't doing things perfectly. It's just doing the next thing.

CLAY: I'm so glad you said that, Sara, because that was exactly what was on my mind, that word grace. Because in my experience as a social worker, parents put so much pressure on yourself. It's exactly what you're saying and can feel like, man, if I'm tougher on myself, if I beat myself up. That's going to give me the motivation to do all these things and to be resilient. But in actuality, the starting point of being kind to yourself is often what actually gives us the space and the freedom to start taking that next right step.

SARA: Yeah. Yeah. And honestly, it was kind of a discipline. It was a conscious choice because honestly, it's easier to be harder on yourself. It's, it's. It's more of a discipline to say, you know what, Sara, have some grace on yourself, have some compassion for the situation. And yeah, I feel like it's something that I'm still working on after this journey.

CLAY: I love that. It's easier to be hard on yourself. That, to me, just resonates so much. And it reminds me of something that you actually said earlier, because I think about grace and then I also think about hope. And I know how important hope has been in your own sense of resilience, but you said something else. You said hope can also be uncomfortable. Can you share a little bit about that too?

SARA: Sure. So one of the hardest days in our journey was a day that Madi wasn't doing so good. And she was in the ICU and she was hooked up to all of the machines. And Brandon was out of state. Taking care of our other kids. And I was with Madi and she had had a procedure that was cleaning out some infection in her lungs. And when she was done with the procedure, they had said she wasn't coming off some of the supporting machines. And that really wasn't what we were expecting. It was kind of a routine, easy procedure, but her body was weak. And so they come in and said, I think it's really important that Brandon get here as soon as possible. Madi may not make it through the night. That was really hard. That was our lowest day. And we live about six hours away. And it was really a moment where I could really lose hope. And I thought maybe now my hope was a discipline to say, I just hope that my husband can get here in time. My hope had to change. But we weren't going to lose hope because hope was going to get us to the next step. And maybe my step just wasn't as far out now. Maybe my step was just smaller. And so we called Brandon and he got there as soon as possible. And it was during a pandemic. So it was during 2020. And so I remember him getting there. And one of the rules was that there could only be one caregiver. And so I hadn't seen my husband in a long time. And so we hugged each other and I saw him walk into that room. And just collapse on Madi's bed. And I had to leave. And hope was really hard. And hope was really uncomfortable. But I thought, man, I cannot lose hope. I don't know the outcome. And Madi made it through the night. And the sun rose the next morning and she made it the next day and the next day. And our cause for hope or our call to hope got farther out. And even if our moment of surrender for our child's life was in that moment, I knew. That Madi's life would be praiseworthy. I knew that even if that moment we were going to surrender her life to heaven. And our lives would go to a whole different level. That we would make a conscious choice to still continue to have hope that her legacy would live on. That there would be life. After her death, that there would still be newness and good, even in the bad and in the devastation. And in that, I knew that there could be purpose in our pain. And it was really, when I say it was really hard, it was really hard.

JANET: I can't imagine, Sara, that's such a powerful story. Tremendous example of resilience, right? When your life is dust and shattered all around you, that doesn't have to be the end. And fortunately in your situation, things worked out so well for Madi and your family. But in those moments, it likely isn't that you feel very strong. And yet the sun did rise, right? And yet the next day did happen. And even when it's dust all around, that resilience to and Keep showing up and keep making a choice. And we talked at the very beginning about this muscle of resilience. That means it keeps working and it doesn't have to be forever down the road that you're able to see. It could just be, I need to make it through this next minute to this next hour. And that's resilience power right there.

CLAY: Maybe that's partly why going through these hard things can sometimes strengthen us because resilience is a muscle and that can be strengthened. And when you go through those hard times and you believe that this can strengthen us, that you carry something with you in that you're able to better tap in next time, maybe to the hope a little bit easier or a little bit quicker.

JANET: Yeah. I wonder how this journey, because resilience, sometimes you don't see it in the moment you see it later, what? What has this journey and practicing the muscle, strengthening the muscle of resilience meant to your family?

SARA: That's a really good question because I feel like this is a hard topic for me because in others' families too, because you don't identify, at least for me, I didn't identify myself as resilient, right? And I look at other families and I think, man, you guys are killing it. You're such an inspiration to me. But I will say that looking back now, I think we did it. We did do it. And one of the things that we do as a family is whenever we have overcome hard things in our life, we choose a rock. And we write on the bottom of that rock the hard thing that we've overcome. And we put it. On kind of like a memorial or a monument or however you want to whatever you want to call it out front of our house and there's quite a little stack of rocks but what it does is it shows us and reminds us of the hard things that we've overcome as a family. Because it's easy to forget in the moment when you're going through something hard that you really have overcome a lot. And it reminds us that whatever we're going through today, we can get through it because we've been through something really hard before. And we have been strengthened. And that was really hard. It reminds our kids, too, you are stronger than you think that you are, even when you don't feel like it. And even when you feel weak, and even when you feel broken, and even when you feel shattered, resilience doesn't necessarily equal strength or feeling like you're strong. It's just truly taking the next step and fighting forward. And the thing about a cancer journey is it's not linear. It's not straight. There's not just this one plan that you just take the next step and it works out and it's beautiful and it's got a pretty bow. It's forward and then back and then it's up and then it's down and it's just sometimes really messy. But that doesn't mean that it's not still fighting forward to an ultimate. It's just this won't be here forever. I don't know if that makes sense. It's just this won't be here forever.

CLAY: Yeah. Does make sense. And it kind of makes me think about this idea of these rocks, right? And you're collecting all these things that actually represent hard things. But there's something important about keeping the memory of those, even those hard moments alive, which reminds me of something else that you've shared with me about this idea, stress doesn't exhaust us, stress without purpose does, that maybe somehow... Those rocks, maybe they remind you of a sense of purpose or...

SARA: When your child is at the hospital, there's a lot of mundane days. And it's really hard to keep a sense of purpose because you really don't feel like you're doing anything. There's a lot of waiting. There's a lot of doing nothing. And it doesn't really feel like you're really fighting. And it can turn a lot of times into a mental game. So you really have to think, what is our purpose today? What are we doing? What's our ultimate goal? And I think that that was really hard for me to keep perspective on a daily basis because everything kind of ran together a lot of times. And some days... Were eventful. We didn't want them to be eventful, but they were, but some days weren't. And I think that looking back, they all were to a big purposeful end. And that was the ultimate rock on the pile, right? We labeled it and we dated it and it wasn't. It represents something huge and it helps keep life as a whole in perspective that when I look back and I think when I get caught up in all of the little things that don't really matter, I look at that rock and I think, what did I strive for every day when I... And Madi were away out of state for treatment. It was to get back to the things that I loved. My home, my family, my life. It really put in perspective the things that were the most important to me. That's to me what that light, that rock represents. The things that were truly important to me and my family. That's what that represents. And everything else to me is kind of the busyness of life. And I hope that after this journey that I don't forget what is the busyness of my life and what distracts me from the things that are the most important.

JANET: Well, in that you've talked about this journey and this time as a season. Or as a chapter, right? That you don't have to stay in the dust. And that's where it's very easy to stay oftentimes. It's very comfortable to stay in that space. And resilience work is that intentional next step, right? That's the work of resilience. That's the practice of that muscle to say, okay, I recognize this is going on. And now how do I want to be? How do I want to show up? What's my hope? What's my purpose? Like you said.

CLAY: That's the neat thing about it too, though, because it seems like resilience is also about that acceptance and allowance. Like you kind of honor that as that's part of our story that happened. We're not going to pretend like that didn't happen or like that didn't change us. We wish it hadn't happened, but. We're going to let that stuff be there as part of our story.

SARA: I think that that was probably the most important part of it was I was really angry at the beginning. I was angry through a lot of it. I didn't want to be there. Why us? And why were we here? And I was angry about what it took from our family. I felt like we were grieving from the minute of diagnosis. But at some point, you don't want to waste that. You want it to be for a purpose. And I guess that's the beauty of that analogy of dust. That when you feel that you've been so shattered that you can't really glue back dust, right? You can't glue back that. You can't rebuild that. But what you can do is create something new from it. And I read that in a book. That's where I got that from. And I really identified with that because I felt like this can't be the end. But I could come out of this stronger. Better, and create something that this wasn't for nothing. What was I going to do with that? And that was my choice. There was so much of this that was out of my control, but the newness in me and what I was going to do with that, I did have control over. How Madi and I were going to do this, that was our control. And so through that, I just I mean, I can only speak for myself, but man, I wanted to come out of this better. And a lot of that came afterwards. When we got home, I really just didn't have a lot of energy other than putting it towards Madi but once we got home and we just breathed in the smells of home and, you know, just getting back to life. But I was doing it as a new Sara. And I wanted to know what that felt like. So, and it took time. It took time and healing, but we didn't just survive that time and the hard. We acknowledged it. I went to therapy over it and healed from it. I didn't want to rush it, but. It's kind of that idea of the broken, you know, we talked about the dust and creating something new, kind of like the person that the potter and the clay, right? But sometimes that pot has some cracks in it and letting that light shine out through it. And that's what I want to be, right? Like, I want to help others. I want to run back in and say, you can do this. It's really hard, but you can do this. And I want to just, I see Madi thriving. Not just surviving, but thriving. And that inspires me.

JANET: Well, and there's such a vulnerability in resilience. Being able to say, this was hard. I didn't want to do it, but I did. Right? This was difficult. This was a trying time. This was one of the hardest things I've ever done. And acknowledging all of that struggle is part of resilience. It's part of letting that light shine them through those cracks and saying, yes, they're there. And it's part of our story now.

CLAY: And I love that you've shared the spectrum, right? You've shared from those moments when you were right in the middle of it and resilience just meant getting up that day and doing what you needed for Madi. There was no sense of, hey, I'm transforming. You're just getting through the day. But then you've also shown how resilience shifts over time and you're able to tap into different elements of it. And I think that's really beautiful because... People are going to hear this at so many different stages and places that they're in.

JANET: Agreed. Yeah. There isn't just one way to do it. And your story and Madi's story is an example of how you did it. Resilience can come from within, but it can certainly come from others. And sharing your story of resilience and vulnerability can help many others tap into what their journey, what their season, what their chapter might look like right now.

SARA: There were some days that they weren't pretty, but I feel like those days that weren't pretty make the. Beautiful days, so beautiful. And I just feel like those are the days that you hope for and that you look for. And I just want to, I hope that others that are just on a really hard day just don't lose hope. And I don't know what that looks like for you and the other caregivers, but just keep fighting forward. And even when you don't feel like it. Or today just feels like a really hard day that, you know, that there's going to be another day and that the sun's going to come up tomorrow. And to just keep fighting forward, even if you don't feel like it.

CLAY: Let me check in with you all. We've gone on quite the journey of grace and hope and also the doubts and everything in between. But I'm wondering, is there anything else that you all want to share with our listeners before we move to close?

JANET: Yeah, I think that it's important to recognize resilience, like we've said, isn't just saying that everything's fine. It isn't calling something great when it doesn't feel that way. Resilience is acknowledging all of those hard beats, acknowledging the dust of the life around you and saying, okay, what's my next step? What's my next moment? How am I going to show up? It doesn't have to be great. It doesn't have to be grand. It doesn't have to look like what the person next to you is doing, but just what's that next step going to look like for you that day? And that grace and acceptance that quickly follows that.

SARA: Yeah. Yeah. I appreciate that, that you said that. I think that there's just so many times where sometimes advice or encouragement, when you're feeling really low, doesn't always feel great. And sometimes just someone sitting with you and crying with you is the best medicine. And I think that even if you could just be that with somebody else, it feels the best. Mourning with other people that are mourning and laughing with other people laughing and just being in it together sometimes just feels. Like the best medicine. And I felt like being with others that are doing it with me was sometimes the best medicine ever. And just hugging somebody without saying anything felt the most comforting. Yeah. And I just appreciate you taking the time to have me on today and hearing our story and just validating hurtful hearts. But also giving hope that you don't have to stay in your hurt, that even though it is a hard journey, that this isn't forever, that this is only a season, and that there is hope even when it doesn't always feel that way.

CLAY: Janet and Sara, I think that's such a beautiful note to end on because it really speaks to this quality that really wherever you are, wherever life finds you as you're listening to this, however you're feeling, it's okay. That acknowledging that and just being with it is maybe one of the most important starting points for resilience. And that can be enough to actually say that you are being resilient today. So Sara, Janet, thank you for your time, intention, and vulnerability today.

JANET: Absolutely. Thank you for the chance to talk about. Resilience and to continue this really important conversation.

SARA: Yeah. Thank you for having me. I appreciate you hearing about my Madi girl and our journey. And I don't know, it's just something that's just life-changing to go through this journey. And I hope that we can. Do our best to encourage other families going through the same thing.

CLAY: Thank you.

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