Love In The Hard
Welcome to Love in the Hard – a podcast about resilience, faith, and finding strength through life’s toughest moments. Hosted by a couple who knows what it’s like to face struggles head-on, we dive into real stories of overcoming past trauma, navigating divorce, blending families, and rebuilding lives with God’s help. Together, we tackle tough topics like self-doubt, entrepreneurship, co-parenting, and how to build a relationship that stands strong through life’s storms.
Join us each week for heartfelt conversations, lessons learned, and the hope that God’s love can transform even the hardest situations. Whether you’re in a relationship, navigating a blended family, or simply looking to overcome personal challenges, this is your place to connect, grow, and find encouragement.
Tune in, share your journey, and discover how to find love, healing, and purpose – even in the hard.
Love In The Hard
When Faith Meets Unimaginable Loss: Chandler's Legacy
Clint and Amber Nelson share their powerful story of faith, resilience, and finding purpose after losing their son Chandler to cancer at age 20. Their journey demonstrates how they've turned unimaginable grief into advocacy through the Elevate Foundation while preserving their marriage and supporting their surviving son Tyler.
• Chandler was diagnosed with Stage 4 alveolar rhabdomyosarcoma at 18 years old, just before his high school graduation
• COVID-19 delayed treatment, allowing the tumor to grow significantly before intervention
• The Nelsons experienced several "miracles" throughout Chandler's cancer journey, including moments of healing and special opportunities
• They describe their first year of grief as "floating in a fog" with the second year being harder as support naturally waned
• Visiting Chandler's grave daily has become an important ritual connecting them to their son
• Their work with the Elevate Foundation focuses on childhood cancer research, advocacy, and legislation
• The Riley Grief Services program provided crucial support, helping them connect with other families experiencing similar loss
• Their marriage strengthened rather than fractured, which they attribute to their foundation of faith and friendship
• They emphasize the importance of allowing grief to express itself in all forms, including anger
If you're interested in learning more about childhood cancer advocacy or supporting the Elevate Foundation, visit elevatechildhoodcancer.org.
https://harborofhopellc.org/
https://www.facebook.com/groups/466839235913252
Hey friends, welcome to Love in the Heart, where we share our journey of resilience, faith and transformation, diving into raw real-life challenges like overcoming past trauma, self-doubt and building a strong, loving family, all with the hope of inspiring others to see God's hand in their own stories.
Speaker 2:We are Patrick and Cindy Pistelli, and we are here to remind you that you are not alone. There's hope even when life feels tough.
Speaker 1:So grab a seat and let's get real. Hey everyone, welcome back to Love in the Heart. This is a place where we get to be real about faith, resilience and finding hope in the most difficult moments, and today's episode is one that's going to not only move you, but it's going to challenge you and remind you of the power of faith in the face of the most unimaginable loss. So Clint and Amber Nelson are with us today, and their story is one of deep heartbreak but also unwavering strength.
Speaker 1:Their son, Chandler, was diagnosed with cancer when he was just 18, and he fought so bravely, holding on to his faith in Jesus every step of the way. And when Chandler knew that his time on earth was coming to an end, he had asked his parents to make him a promise, and that promise was that they would never stop fighting to help other kids find a cure, and that's exactly what they've done. So, through their work with Elevate Foundation, Clint and Amber have become powerful advocates for childhood cancer research. They've spoken before Congress, They've worked to bring awareness to the severe lack of resources available to kids battling cancer, and they've turned their pain into purpose in a way that's just truly inspiring. But today we're not just talking about cancer. We're talking about family, who they were before Chandler's diagnosis, how they walked through the hardest moments no parent should ever have to face, and how they have continued to choose love even when their world was falling apart.
Speaker 2:So, clint and Amber, welcome here today, and I just want to say that, cindy and I, we just want you to know how honored we are that we get to have this conversation with you today. So I know what we're going to talk about. It's not easy. I can't imagine having gone through what you guys have gone through, but we also know how powerful Chandler's legacy is and we know the work that you guys are doing to make sure that that legacy goes on. So today, what we want to do is we just want to help you share this with the world.
Speaker 3:Thank you, we're very honored to be here as well.
Speaker 4:Yeah, very much.
Speaker 1:So I just want to share how we met, because we have gone back gosh, 23, 24 years. Maybe it's been a long time. So, yeah, maybe no. We actually have an amazing friend who owned a tanning salon, and that's how Amber and I met. So we got the opportunity to work together and get to know each other and be crazy together, and I think that's one of the things I love about you is your energy and just how, when I'm around you, you just bring out something in me that isn't always there.
Speaker 3:So I'd like to tell a little story about Cindy, when you first started at Sunroom.
Speaker 2:Oh, please do Please.
Speaker 3:I remember I was her trainer and I was going over how to wash the towels, but we had to do it a certain way. You take them out of the washer and you have to shake them and then put them in the dryer. So I'm going over this with Cindy and she says you know, you're very thorough. And I said should I not be thorough? And I said I kind of have to be because, well, the owner's dad tells me to do this and it needs to be specific.
Speaker 3:And she goes no, I love it. She's like I love that you're so thorough because I'll forget everything you've said. So that was just fun, because I always tell everyone talk to me like I'm three, and so I was talking to Cindy like that and she said I love you for this.
Speaker 1:It made it easier to understand Cindy like that she said I love you for this.
Speaker 2:It made it easier to understand.
Speaker 4:So tell us, clint, how did you two meet? Well, it kind of came from opposite ends of the state, but she was living in Kokomo. I was going to school at Rose-Hulman and I was playing in a basketball tournament through a Gus Backer a three-on-three tournament, and I was playing with a few of the guys there at Rose-Hulman that I was on the same dorm with and it just so happened that one of the guys on my team, his girlfriend, was friends with my wife, so she was stuck over with my team the entire time and that was just kind of how our relationship started. And I didn't really say much at the time. I don't think I even said two words to her, especially on that.
Speaker 4:Uh, that weekend it was bad weather, kind of like this overcast, nasty, kind of cold. Shouldn't have anything to keep her warm. She was. Everybody was freezing. Here I am, I got a bag full of clothes and stuff and she's like I wish somebody had a jacket and I said I think there might be one in my bag, but I didn't do anything to help her get it. So she's just standing there Like that'd be nice If I had a jacket. My dad yells at me like you could give her a hand and just get it for her. So that was kind of the way that thing started. And then, just from there, I just called her out of the blue, probably a week or so afterwards, just called her once, hung up on her, called her back. She answered, I hung up on her again. I think I did that four times before I finally said hello. And she was yelling at me on the other end at that point.
Speaker 1:Was that just nerves?
Speaker 4:Oh yeah, I had never done that before. So those are the nerdy geeky kids. That was not very socially how would you say, kind of socially awkward when it comes to talking to girls.
Speaker 3:Not only that, I was calling him the wrong name the whole time. So when I was cheering, I've known a Kurt and a Clint all my life and every time Clint would make it, I was like, woohoo, go, kurt. And then all of a sudden I see his parents walk over. Clint would make it. I was like woohoo, go, kurt. And then all of a sudden I see his parents walk over. I'm like oh, you're his parents. And they're like yeah, and was smiling. And then my friend kept saying it'd be better if you just yelled without the name. And I was like yeah, probably.
Speaker 2:I love the story. I love the beginning. That is awesome. I absolutely love it.
Speaker 1:So for you was it love at first time.
Speaker 3:It was for me. Well, yeah, he thought, yeah, I think at the time I just wasn't, I wasn't looking for a boyfriend or anything. So no, and to be honest, I think that I fell in love with his parents first. To be honest, I really did. I sat and talked to them and they were the best people. So really I just I loved them and I really didn't get to know him until later on, and then it was just a chit chat and yeah, and then I he's never asked me out.
Speaker 4:I've never asked her on a date.
Speaker 1:So you've never actually asked her out at all, but you did ask her to marry you.
Speaker 4:Yes, I did.
Speaker 1:That's a whole nother story. I love it. I love it. So if we, so, if we fast forward, just a little bit, tell me about when you found out, not only that you were pregnant, then finding out that not one, but two babies.
Speaker 3:Yes. So I did find out that was plugging lights in the sunroom and I started to gag a little and I thought, oh my gosh, am I coming down with something? But I didn't feel bad, did the same thing again, happened again. Well, then our boss's cousin comes in and I tell her this because she was the first one in and I said she said did you get a pregnancy test? And I said, oh my goodness. I said no, I said I know I'm not. You know I've been on birth control for years, everything's fine. So she said I need you to do that at lunch. So she, I went to go get lunch and I was so excited about it that, well, that pregnancy test was still in the car but I was eating my lunch, you know that's so later she calls and she said so and I was like oh, I got that test, but it's out in the car. And she said Amber, go do it. So I did, and immediately it turned that I was pregnant.
Speaker 3:Well, I was scared to death and we had been married a year but I was still scared. So I cried and I was like how am I going to tell Clint this? And they're like you're going to be the best parent and I was like I'm scared to tell him, so I had to call. And I was like I'm scared to tell him, so I had to call and I was trying to hold my breath because I was trying to hold it all in to get through the secretary. And so I told him you're going to be a daddy. He said hold on, I can't hear you. And I was like you're going to be a daddy? He's like I am. And I said yeah, and that was kind of the conversation, because I think he went into shock as well.
Speaker 4:Yeah, it didn't quite register at the moment what she was trying to say. She was just hysterical on the phone and I finally got what she was saying, but it just didn't really click and then our very first ultrasound was 9-11 of all days.
Speaker 3:First ultrasound was 9-11 of all days and it was so quiet and it was very hard because I didn't know if do I want to go to this appointment or do I not today. So we went and so when I was in there she was doing the wand and she started to look very serious and I thought, oh, please don't tell me. You know, this is probably not a good day to tell me anything like this, but she looks over at Clint and she said Clint, your twins run in your family. And I went. I was stunned, and so Clint said Yep, yeah. And she said Okay, because I'm seeing two here.
Speaker 3:And I was excited because all my life I wanted twin boys. Like if I was going to have twins, I want twin boys. He said are they girls? And I looked at him. They better not be. But she said oh no, they are definitely boys. And I was yes. So it was a wild, wild ride, and every time I would call and I'd tell everyone they didn't believe me. You've always wanted that. There's no way. There's a way. There's baby A and there's baby B. So yes, that was a. It was a fun day, but it was also a sad day.
Speaker 1:Oh, absolutely I. I remember being in the tanning salon and I remember just sitting in the hydrosage room. I don't know if you remember this, but we were sitting on the floor and you were like I'm having twins.
Speaker 3:Why do I do it too? At the same time it was like I wanted them, but when I found out it was oh two.
Speaker 1:I think that's probably every parent. When we find out we're having a baby, we're like this is exciting, but I have no idea what I'm going to do Exactly. Yeah.
Speaker 4:I mean, we were not expecting it at all, we weren't ready for it by any means. But God had other plans.
Speaker 2:So eventually, the shock of having twins wore off and they grew out of their baby stages. So what? What was life like for your family? Twin boys that I'm sure were rambunctious. And, uh, what was life like before Chandler's diagnosis?
Speaker 3:Oh man, the boys are. They're hilarious, I wouldn't say rambunctious, so much To be honest Only when they were two. Two. I could have gave them to grandma and picked them up at three. That would have been good. Yeah, they were great. They actually were very calm. I kept telling Clint I really don't know where these boys have come from.
Speaker 4:You know, in certain situations oh, I've wondered all my life that how did we get blessed?
Speaker 3:They never liked yeah, they never liked Halloween. They could care less to ever go trick or treating. They said, why would we celebrate evil? And I'm like, wow, you know, to me it was like it was all about candy when I was a kid, and so it was things like that. They were awesome, though they were best friends. We were all four very close, very, very close. Anybody that ever knew us were I don't know how you're so close. I've never met a family so close.
Speaker 4:If you saw one of us, you saw all four of us Pretty much. We were always together.
Speaker 3:Yeah, I love it. Yes, they were fun. They played basketball and baseball football and they were just. It was fun to watch them. They were just so different they were.
Speaker 4:They had opposite personalities.
Speaker 3:They could look at each other and just just make a noise, and we knew that noise meant trade, let's trade. And then it was the gut laughs that we could hear in the other room, just gut laughing, and it could just be because they were making a face at each other. And then, once they got older, if you asked them are you best friends? They would say and I'm like that's because they're brothers. Yeah, later, when Chandler was asked, you know, you have a twin brother, that's so cool, he would say, yeah, you know he.
Speaker 3:Later it was kind of yeah, and he's my best friend we're kind of, yeah, and he's my best friend, we're kind of close, we're kind of close.
Speaker 4:But he was definitely the antagonist. He was the very outgoing well, not very outgoing, but way more outgoing than his brother Tyler. But he knew how to get his brother going. So if they were in their bedroom together, it was fine. If they went to the kitchen together, it was a whole other story. We would have to run, run. Somebody was running through the house screaming like a girl by the time it was over.
Speaker 1:What did they do in the kitchen?
Speaker 4:They just pick at each other constantly, and it's usually Chandler starting it.
Speaker 3:Chandler's favorite thing to get Tyler was your mom.
Speaker 4:Yeah, everything. Your mom Answer to every question and I would say is wonderful, it is beautiful.
Speaker 3:I would always come up with something, but that was the one thing that drove him crazy. And so he would do that kind of stuff in the kitchen, or just poke, and Tyler could take so much. And then it was all of a sudden you'd hear Chandler, hands are flailing, you know it's like oh no, so yeah, not in the kitchen. It was like any room was good, outside. Even they'd tackle each other, whatever, it'd be fine, but don't put them in the kitchen. There was the bickering, the yelling. You know I don't put them in the kitchen to go. There was the bickering, the yelling the.
Speaker 1:You know, I don't know why that's so funny. It's so funny to me that in the bedroom they're like the best of friends, yeah. Anywhere on the house they're typical siblings chasing each other around. Yeah, they could be playing video games.
Speaker 4:They'd be sitting on opposite sides of the bedroom with headsets on on their video games and barking back and forth with each other on the game, but yet as soon as they took the headphones off, it was fine.
Speaker 3:I love it. I love it. They're crazy.
Speaker 2:I find it interesting that these things happened in the kitchen. Everywhere else they're fine, but it was in the kitchen. What was it that Chandler was going to school for?
Speaker 3:To be a chef, it was almost like, this is my kitchen. This is his domain For sure.
Speaker 3:So that started at an early age Very early, actually, when he was in fourth grade, he said I want to be a chef. And you know well, let's rewind just a minute because when they were little and we were in the swimming pool one day I asked them what do you guys want to be when you grow up? Because you love to ask a two or three year old that and Tyler, right away, I want to be a cop. And Chandler said I said what do you want to be? I want to be a robber. And I was like, OK, and that is their personality. That is definitely their personality, personality, except Chandler wouldn't rob anybody, but it was just a fact of right away, and they've never played cops and robbers, ever.
Speaker 3:But it was just an automatic. And I was like well, you know, if you mess up, your brother will send you to jail. And he was like you would. And he yeah, if you were doing bad things. So and then later on fourth grade, he said I want to be a chef. He has always loved food, like there wasn't a food, even growing up, that he wouldn't try, that he didn't like.
Speaker 4:They love salads as a kid.
Speaker 3:Yes, devour a salad. So and then, when we asked Tyler, he said he wanted to be an engineer, but he didn't quite know. He loved math and he loved to be hands-on.
Speaker 4:He took some engineering classes in high school which he really loved.
Speaker 3:Yes, and then later, when they went to Area 31, chandler wanted to be a chef. I didn't know that was a tech thing, so that was really cool and absolutely loved it. And so we said well, tyler, come with us and let's see if there's something that you would like just to even try, because that's cheaper than going to a four-year college and finding out you don't. So he fell in love with Tool and Die, which we knew he probably would, because it's math and it's hands-on.
Speaker 4:And so Kind of runs in the family too. My dad retired from tool and die industry after what? 43 years?
Speaker 2:and uh then my uncle and grandpa yep so we were talking earlier before we started recording, and you shared a story with us about what Chandler's friends would have said that that he would have been when he grew up. So I think that's important as we as we move further on to this story. So can you share a little bit about About what his, how his friends saw Chandler?
Speaker 3:Yes, when he was 13, we had a birthday party for him and I had this good idea that I really would like to ask those kids what do you think Chandler and Tyler will be when they grow up or when they graduate? Tyler will be when they grow up or when they graduate. So a lot of them a couple of them had put cops and another one put firefighters, and one put that he wanted to be an engineer, I think, for Tyler, and there was only one who put a cook for Chandler. The rest of them, which was another five or six of them or so, said he's either going to own his own church or he's going to be a minister. And when I read those it almost brought tears to my eyes because I'm like that is him. He said I would work with the kids, but it would be. You know, he would have said I need to learn a lot more than this. But if any one of those were going to be a minister, it would definitely be Chandler.
Speaker 4:Yeah, he would. He loved kids Even growing up. He always kind of flocked to younger kids and would just treat them like they were, almost like they're babies, and just kind of protect them and try to play with them, and just he's always done that.
Speaker 3:And he would ask, he said, well, do you think the Lord would approve of this? Do you think the Lord would approve of that, you know, and things that I had questions about, even with my adult stuff. He would say, even with my adult stuff. He would say, well, do you think that Jesus would like you to do this or do you think that this would be a better idea? And I was like, well, I really don't know, but I mean, that's how he would always talk.
Speaker 2:He, he just wonderful, wonderful faith always, so that faith was always a part of his, always, always a part of his character.
Speaker 3:Absolutely, absolutely.
Speaker 4:Yeah, and even the other kids that he went to school with and stuff. If you ever talked to them, they were like they were always the nicest kids. They always treated everybody with respect and never talked bad about people and they were just like. They are both very good kids and they just always carried that with them and that's part of having God in your life. You just carry yourself different.
Speaker 1:Absolutely Well and honestly. That's one thing that sticks out about you two and just the way you raise them, because you know, I know, going through this journey that you've been through, that stood out to us in a major way Because we were talking and just about everything you've been through and that was earth shattering. But you still showed up in a way that was just so impactful for other people, still showed up in a way that was just so impactful for other people and you know, just to see how you stayed together, to see how you leaned on one another and in those hardest times it was just like. I remember we left, you know the funeral and we were like they're just unbelievable people, Unbelievable people.
Speaker 3:People have said that we're very strong and sometimes we don't feel very strong. You know, sometimes we are, we feel very weak and but I will tell you that faith that was.
Speaker 4:The number one thing that we leaned on.
Speaker 3:Absolutely. There was never a question of. Chandler was very I don't know. His faith was just unbelievable. So, oh, that's what we would go, we will do, and how we live is through him, because of the way he would tell us all the time that he would just lead us through.
Speaker 1:Okay, so if you can just kind of go back a little bit, I want you to tell me a little bit about the diagnosis and just the journey through cancer. So if you can take us back to the moment Chandler was diagnosed and what were those first days like for you guys as parents?
Speaker 4:I'm actually going to take it back just a little bit farther. He was involved in culinary through Area 31. He was actually the sous chef for a Valentine's Day dinner that they were putting on and it was open to anybody to come. But it was a full out four course meal that they were putting on and it was tri-tip steak, it was oysters, it was scallops, I mean, you name it. This is what they were doing and he was the man in charge. So we of course went and best dinner I think I've ever had, and probably the best moment I've ever felt for him as far as being proud of him and seeing what he could do.
Speaker 4:And unfortunately that was also the same night the symptoms began. We just didn't know it. We just didn't know it. Then the next day it was probably a day or two after that he came to me and said that he had some issues that he was nervous about. He had some blood show up and some urine.
Speaker 4:So we got doctors involved and this is where the journey begins and went to our normal doctor. Of course she wasn't available, so we got to see a nurse practitioner and they did all kinds of blood tests and urine analysis and stuff, couldn't find anything wrong. And she just kept blowing it off Please drink more water, and drink more water and drink more water, just blowing it off. Didn't really care to even have the conversations and she's like but if all these tests are coming back negative, there's still something wrong. We need to figure out what's wrong.
Speaker 4:And it comes down to the point where I had to call her and tell her I'm like you're the doctor, you tell us what's next. I may be a former EMT and firefighter and I know some of the next steps that should be done, but it's not my job to tell you what to do. But here's what I think should be done. And she's like okay, we can do all those. Well, did all that? Still nothing. Everything came back normal. So they put him in for a CT scan. Couldn't find anything Like well, last thing we do is send him for urology specialist. And they got a date scheduled.
Speaker 3:Then COVID hit, shut everything down the day that he finally got to see one, and then three months later we were able to go. So for three months the tumor grew and luckily he didn't have any more symptoms than what he had. It was in his pelvic floor and so you know he was having trouble with urinating and but he didn't have any more blood, thank goodness.
Speaker 4:Yeah.
Speaker 3:And he was so for three months. He was growing. So when we did get to see the urologist he said well, we were not allowed to go into any doctors. This was COVID and we couldn't even walk in the building. Now, this was the first time that our child has ever even filled out paperwork for a doctor and he had to do it on his own and I was like well, just call me if you need any questions. So that was very difficult for us.
Speaker 4:And of course he was 18. So technically he is an adult, but he's not an adult in mental capacity by any means whatsoever, right?
Speaker 2:And this is at the very end of his senior year, is that right? Yes, so he is at this point where he's looking forward to graduation, and then the world shuts down and everybody's life was turned upside down. But his life was completely turned upside down.
Speaker 3:And now we had to. He, when he went in there we had already done a blood test, we had done urine tests, Like we have done, above and beyond what normal people would go when they go to a urologist, and then he tells us he comes out and well, he was very worried and he said, well, I had to have a prostate exam as an 18-year-old.
Speaker 3:He said we never do this for an 18-year-old, but between you and your parents you have went above and beyond. So this is really the only other way we can tell if we can feel anything. So of course they did that and they came back and called us and said that they did have a mass. Now, at the time we were thinking it could be infection. It could be. You know, you're never thinking cancer, you know. So then he came back and said well, we need to do a biopsy on this. So of course we went back and he did a biopsy. They did a CT scan with contrast so that they now knew.
Speaker 3:And let's go back just a second. This is where a miracle came in. Okay, because through all of this there were miracles. When we were asked to go to the urologist, it was a whole different doctor. When they reopened, this was a different doctor. So would that doctor have gave him this prostate exam to feel exactly where this was, to be able to know what to look for? Yeah, so then they came back and said that, yes, it was a mass.
Speaker 3:We did go in and get his biopsy done and luckily dad was able to go in there at the time, because it was just one and I wanted him to go in. He would get all the information. There was going to probably be a lot thrown at us and I would probably be stuck on. You know just what's happening at the moment. And then they called us back and said and of course we're a mess when they just say there's a mess. So now we have found out it was what June 19th, 29th, 29th they came back and said that it was cancer, that it was a tumor. They said I'm pretty sure that it's a sarcoma, but we don't know 100%. We definitely need to.
Speaker 4:There was too much necrosis or death of the cells to be able to tell the exact cell structure. We're going to have to do this again.
Speaker 2:Oh wow.
Speaker 4:But since they were pretty confident that it was a sarcoma, they said it needs to be moved to the IU Simon Cancer Center or Cleveland Clinic.
Speaker 3:And be ready, be ready, packed and ready. Now to us this meant is our child dying Majorly Like this is serious Right right.
Speaker 3:And now, since everyone was just opening, it was can we get in close or where can we fit in, Because now they're bringing people back. That has been backlogged, and you know. So we got lucky, backlogged, and you know. So we got lucky and we got sent to the IU Simon Center, which the sarcoma specialist had been doing this for 40 some years, and he was amazing, but he was like the old school doctor and Chandler made us laugh the first time because we were able to come in the very first time just to kind of go over everything into a different room, and this man was very thorough but he said I'm one that's going to tell you that I'm not going to tell you what's next until we get there, because things will change constantly and I don't want you to get worried when you don't need to be worried get your hopes up, things like.
Speaker 3:But it came back that you had stage four, avular rhabdomyocercoma. Now there are what? Four different types? And this was one that he said at the time I'm going to send you to genomics because we got to make sure exactly what your gene and your cells are made of. I mean, it was an awesome test, but it came back it was AVLR and that means that it's not curable. Now, in Chandler's eyes, he was very naive. He told us later that he said well, don't worry, he's like it's not the kind that's going to kill me. And to me I was like yep, this is cancer, you know. We just just know that you know.
Speaker 3:And all cancer is gonna be deadly, you know, just depends on how they react but we were so happy that he was so naive about this, so that made it great, especially for the first year, because he just. But what didn't make it great was they said that it was the size of a softball and it was like six centimeters or something that he would definitely have to go through chemo.
Speaker 4:Yeah, it was too large to do any kind of operation to remove it or anything along that lines. It was too involved with other structures around it, so there wasn't any other option but to start chemo.
Speaker 3:Now what their point was. They wanted to give him chemo so that it would shrink enough that they could zap it with radiation, and it was if they could not do this, he would lose all of his parts. Now, as a man boy, that's not something you want to do Not saying that it hasn't been done, but it's something that I'm like how would he go through that? Yeah, we went from that to. He was so strong Like I can't even explain, like we could walk out and I'm about to lose my mind. And he was just like can we get some pizza? Hut?
Speaker 4:You know it was like nothing just happened.
Speaker 3:You know he had silly questions, you know nothing. That was real serious. So we had to go with that and we went with his attitude and we still go with his attitude. That's how we live today. He was very positive. He was a very, very positive. I can't even explain the positivity he had, but that was the diagnosis. Immediately when they said that it was cancer, he looked at me and he said Mommy, why me? And he lost it. That was hard, you know, like why, son? I don't know, I don't know why. I don't know why anyone gets cancer. But you know, as humans, yeah, we've created, we've created this.
Speaker 3:So you know this isn't, this isn't a God work, this isn't, it's not a punishment, no, and so he. You know this isn't, this isn't a God work, this isn't a punishment, no. And so he. He just he lost it that day. He had a very hard time. After that, you know, tyler got home and they were the same old boys. It's like nothing had happened. You know, we had to tell Tyler and I said, well, I'll go pick Tyler up, and I did, and I told him and he didn't say anything. He just kept his head down and I said it's OK to cry because he's our strong one. He's one that I don't want to show my emotions too much. And then he cried.
Speaker 2:I think it's really important, clint, what you just said, that this isn't a punishment, because that's how we tend to look at it. This isn't a punishment because that's how we tend to look at it, and we tend to look at it and say what, what did I do wrong? You know what did so-and-so do wrong, and that's why are they experiencing this. You know, that's that's what Job's friends did to him. Job's friends sat down with them and said what did you do? But it wasn't ever about anything that Job did, and so I think it's really important to understand that, and I think we'll probably touch on that portion of it here a little bit later. But were there any specific prayers or scriptures that became an anchor for you guys during those years? You know, became an anchor for you guys during those years.
Speaker 3:Well, it was fun that every single Sunday we got up and we watched church, no matter what, and there were times that Chandler would get up even before us, or we would be up, just haven't come out yet, and he would say, well, we do in church and I'm like, okay, it's time for church, you know. So it was fun that it was wild how almost every sermon had to do with anxiety, depression, if you have been having this diagnosis of cancer.
Speaker 4:Yeah, specifically calling out cancer.
Speaker 3:And just the. I think every one of us. I would have tears, you know when he would, but it was powerful and it was needing to be heard and I said isn't it wild how the Lord will tell us exactly what we need in the exact moment that we would need them. And so, as far as a specific prayer, a lot of it was anything that was to be strong, be courageous. Because that's what he was, and he took it to heart.
Speaker 3:So when we had 1 Corinthians, 16, 13, 14, we put that on his headstone because that was him and he did everything in love. You know, he smiled all the time. He loved all the time. And I will tell you that when one day, when we were at the IU Simon Center, this was another one that came out of the blue, but he said to me this was another blessing that the Lord gave us, but he was told that we could have a rod put in his leg because his cancer had spread and went into his femur and they said it's, it's cracked, so we may have to put a rod in.
Speaker 4:It was on the verge of completely breaking and he was put on limited activity. Don't step down on stairs with that leg, don't be running, don't be jumping. So it was. It was pretty serious and he was in a lot of pain.
Speaker 3:Yeah, it hurt quite a bit. But at the same time and the cancer had spread, it had went up his spine, it was starting to go everywhere His lungs and his back spine.
Speaker 4:it was all over the place.
Speaker 3:It was everywhere. So after we went to the hospital and he had to go look, go to the bone specialist, he had also had to go to his regular doctor. His doctor came in and of course we're asking for a lot of prayers right now because this was one of the most intense moments. And so we get out of the vehicle and of course I always would get out, give him a hug because we had to stay in the garage, and he hugs me and then he grabs hold of me.
Speaker 3:It was almost like he knew because I would hold back tears. He knew this was the one time that I had mom probably won't be able to keep this together and we were going to get news, yes or no, you know. So he grabs a hold of my arms and he said mommy, I got on my arm or a God, I need you to put yours on and let's do this. We have no other choice and I will tell you that visit was a miracle. We well, he got into the room and the doctor they had we'd already had scans done- they hadn't read them yet the doctor hadn't.
Speaker 3:No, he said I need to go out and read these scans. And so he went out and read them and he peeked in the door and he says Chandler. And he says yes, sir. And he said do you have a lot of people praying for you? He said, yes, sir. And he said do you have a lot of people praying for you? He said I absolutely do. And he said well, it shows, because there's no crack in that bone and there was, and there is absolutely no sign of cancer in you. And he was like thank you, lord, you know lots of prayers and so he's like are you still in pain?
Speaker 3:He's like no no pain, I don't have pain. And to us, when we looked back, we kind of sat in the living room together and it was like a chessboard. He said think of this as a chessboard. He said the Lord is using us like this.
Speaker 4:This doctor wasn't there.
Speaker 3:We're going to put this doctor there and he's going to do this. And, chandler, I'm going to put you in a little bit of pain and I'm going to put you in this for just a little bit. And then the reason why this happened was because he also was going to get radiation. The Lord did not want him to have radiation and the stories that I've heard about the radiation was horrible. And so the Lord's like I'm going to give you this much pain just for just this much time. And it was because he didn't have to have radiation at that time because of that. And then it was like not even a week later he's completely, his bone was completely healed, absolutely no cancer, and it was like that's exactly what he did.
Speaker 3:And he did that several times. I will tell you. There was a time he didn't get to go to his open house for graduation, didn't know if he would get to do that, but he wanted to do it. I don't care if we have to wear masks, we're going to do this because we haven't been around people. And that was another time that he got his port put in and then he was supposed to start right away with chemo and, sure enough, his body was like this is a foreign object and he got a fever so he didn't have to start. So therefore he did not have chemo in him and got to have his graduation, got to be in his open house.
Speaker 4:Yeah, the fever went away the next day, so he was fine.
Speaker 3:It was absolutely mind-blowing and I said and this is exactly why, if you don't believe in the Lord, I don't know why not. And it was happening just constant things like that. So when we talk to other families, it's like, wow, Chandler's wasn't as bad as what it was bad.
Speaker 4:It was terrible for us, for us.
Speaker 3:Then when you hear other stories, wow.
Speaker 4:His kids go through unbearable amounts of pain and suffering and weight loss and just they're just miserable.
Speaker 3:So we thank the Lord that he was able to do this. I mean, this was just a miracle, you know, and I remember sitting in the garage just praying and praising the Lord that, wow, this is unbelievable. So why wouldn't I share that with the world?
Speaker 1:You guys have had so many miracles throughout the whole journey and you might not look at them as miracles in the moment, but then you get through that and you can look back and say, wow, God showed up in a really powerful way.
Speaker 4:Yeah, that's what I told her at one point. I'm like, just sit, as he said in the Bible, be still and listen and you'll see me. And we sat back and we just kind of mentally walked through the path that we'd already been through, and that's when we started seeing how the pawns of that game were being placed where they needed to be and how things were happening to put us in the right place at the right time, with the right person and to avoid some of these things that would have made his life just miserable.
Speaker 2:That mindset that you guys have and had even during that time. It only comes through faith, and it only comes by keeping your focus on Christ, and so I think that's what makes your testimony so incredibly powerful throughout all of this. So I know that you guys have an incredible story about a nurse who wasn't even working the day that Chandler passed, but showed up to be there with your family anyway. So can you would you mind sharing that story with us today?
Speaker 4:Yeah, this one might be a little difficult.
Speaker 3:So, that's okay. We had a nurse there that when we walked in it was a woman and that was the very first one and there was a million doctors. He got rushed to pick you and it was we need oxygen right away. Then it was the very next day and I can't tell you how appreciative we were of this man and every one of the family that would come in was just. That man is amazing because he never got to meet Chandler when he was communicating and everything.
Speaker 3:No so, but he would hear our stories and then he would hear our family stories as they would come in through and and he was like this boy is unreal, like I want to taste his food. I want to. You know, he said he's so funny and, and before this, to communicate, because our families were able to come in, they had put the Lifted a bunch of the restrictions and we were able to have family in to see him.
Speaker 3:Took some of the pain meds down so he could at least. You know, he could never really open his eyes, but he wanted to communicate and we also didn't want to tell him. By the way, you can have all these people where this whole time. He hasn't am I dying, you know, that's not what we wanted. So I said you'll never believe this, but they've lifted the restriction and they can have four people in here at a time. And I said is that okay to do that? And he shook his head yes, because he was ready for people.
Speaker 3:So he would grab my hand and he would write on it everything he wanted to say to whoever may have talked to him, which I thought, man, your mind is amazing right now and through all of this. So this male nurse, I never got to see that and we would tell him. This is how he was communicating and I wish you could have been here to see it, because you know he was shooting the gun, you know, and I'm like, where did that even come from? He was very humorous. His uncle came in and he's a big rams fan and they'd always bicker about rams and the colts, you know. And he walked in and of course the rams won the national champion that year, and so he comes in and he's got his national championship shirt.
Speaker 3:He's like how about those national champion Rams and Chandler is immediately I need your hand. And so he writes on there. He's lucky I can't talk right now, and so that just made all of our day. So he saw his humor. He was very smart.
Speaker 4:He was very much Chandler. Yes, facial expressions beyond belief.
Speaker 3:That's how everybody will tell you. If you didn't know what Chandler was saying you did, because he did it all in his facial expressions. And so, yeah, he came in and he was listening to all these stories and he fell in love with him. He said I feel like I know Chandler and I don't know Chandler, but I feel it. So he would tell him all the time hey, buddy, I'm going to lift your arm and clean him and, and you know, he wasn't there really, but he was so kind, always cleaning him, always just doing everything. Well then it came to the day that we had to make a decision and no parent should ever have to make that decision and there was lots of prayer, said. People ask us all the time like, how did you do that? Well, I'll tell you it was the Lord, and I will tell you that that night and this kind of goes with Brian's story that night I hadn't slept. I mean we had slept four hours in four days.
Speaker 4:I mean there was not, and every time we'd lay down there was something else some complication happened and we had to rush back to the room and just one thing after another and thank goodness that we had the Riley, the Ronald McDonald house awesome, they actually have rooms in Riley Hospital. There's not very many.
Speaker 3:Usually they're not open.
Speaker 4:They're already given away, but there again, they had one room left and they gave it to us.
Speaker 3:And they said you can have it for seven days. Usually it's a day-to-day basis, but we know a situation and we'd like to open it up to you. If you don't use the seven days, you don't, but it's up to you and then we can renew it or whatever you'd like to do. So I remember going into the restroom and we finally got in there and I was like I'm going to take a shower and right away this, just it, hit my chest so hard and I was like Lord, I know that you know this more than anyone would ever know this you gave your only begotten son and I have another son. I'm lucky I have another son, so you're going to know this more than me, and if you have to take him, there's no better hands. There's no better hands than yours, and you're the only one I would ever give my child to. And so I showered and then I went into the bedroom or back to our room and I grabbed a hold of Clint's face and I said it's time we're not selfish, we're not selfish and we have to do this together and we are going
Speaker 3:to love each other through every bit of this. This is not one of our faults at all. This is. This is our story, this is Chandler's story, and we're going to get through this. And we sat down in the bed and we prayed very hard to make this decision. And I will tell you we walked out of that room that next day and we could have picked up a house and threw it. There was nothing stopping us. It was. Even when I think of it today, I'm like how were we that strong? How could you make that decision?
Speaker 4:All the conversations and everything we had, neither one of us shed a tear that day it was just this had to be done.
Speaker 3:They'd already showed us that he was pretty much brain dead, that there was too much.
Speaker 4:Too much toxicity in the blood and it was damaging the brain severely.
Speaker 3:So when we made this decision, we went back to the room afterwards and Brian was there and our nurse, and I asked him. I said, brian, will you be here tomorrow, knowing he probably wouldn't because this was his second shift? And he said no, I'm not, but if you would like me to be, I can be here. And I said well, I wouldn't want you to do that. You're taken away from your family. You've already been here for two days. You know I don't want to do that.
Speaker 3:You guys work long shifts, you need your break, you need your family, yes, and so we, of course, had spent time with Chandler and then came back. And, as we're coming back, you know, we were walking down the hallway and there was Brian and I said Brian, what are you doing here? And he said well, first of all, I got to tell you. We sat down and ate as a family and he had a three-year-old and he said I told us Chandler's story, all about him, all I could remember and just how funny he was and fun and all the things. And he said when I put my child to bed and I read to him, and as I was walking out, I went to flip the switch and he said daddy, wait. And he turned around and he said what's that? And he said I want you to go be with the sick boy tomorrow. He said so, my family is okay with this. And I said but are you okay? And he said it's going to be hard, but I'm okay.
Speaker 3:And that man was amazing. He basically, when he went out, you know, there were several ways that this could happen, and so when they did it, he was pushing drugs so hard that almost illegal that. But when chandler first passed away, it was scary to me, um, because he did come up, but when he did it was a way that his chest came up first and he came up like this and sat up and then you know, you're thinking as a parent, I have done something wrong, like maybe this isn't the time, I don't know. But then he did this again and Clint was able to stay in there. I could not and I said I can't watch this because I didn't want that to be my last, but I also didn't want him to have to be in there.
Speaker 4:No, and I didn't want her to see it. So I just grabbed him, I just held him.
Speaker 3:Yeah, and just kept holding me. And so when we came back in, he she said you know, come back in, because I wanted to hold him before his heart went out. Um, and we got to do that. Uh, Brian, afterwards, once again, this man was amazing to us and he said I know, that was so scary, so scary, and he held us very tight.
Speaker 3:But I want to tell you something that was beautiful to me, and not the death itself, Of course that's not, he said, but I want to tell you that I've seen many of these. I have to. That's part of the job. He said I've never seen anything like that. And I said well, what do you mean? And he said well, when he passed and his chest came up, usually they'll just sit up, no, his chest came up first and he said Clinton, Amber, his soul, they were grabbing his soul to take it, and you have gave him such a beautiful life that he just didn't want to go yet, and that put it in perspective to the point that that made that so much more beautiful than what I was picturing in my head.
Speaker 3:You know, you just picture a zombie, or you know it just struggling to breathe, and that's his reaction.
Speaker 3:But and we knew as firefighters that this could happen and it's just your body trying to get air, but it's your son and it's a whole different. It's a whole different thing. But for him, to put that in that perspective, he said I'll never forget this. And so I know that when you speak of love, and I know that you have love in the heart, I will tell you that our minister was sitting there and I turned to Clint because my sister said this man was a rock. Clint was a rock to hold your son, to do this. This was so hard, sis, and I looked at him and I said, right straight to his face how in the world do you keep doing things to make me fall deeper in love with you? And my minister said I will take that to the grave because it is very hard as a minister, because you know this can break a marriage apart. This can break up a marriage and there was no question that this wasn't. You guys are so, so close.
Speaker 4:It was never an option. It's just you don't. That's what your spouse is for, that's your rock. Between the spouse and the Lord, I mean, what other two places is there to go?
Speaker 2:What an incredible testimony to Chandler's legacy, but also to the reason that he had the faith that he had and that's because of the way that you both trained him up the love for one another, the love for family, the love for him and love for Christ that you guys showed him. That is a testament to what you guys did as parents and that is incredible.
Speaker 4:He had an incredible love for family. I mean that that was. That was one of the big reasons why he wanted to be a chef. He's like what brings everybody together?
Speaker 4:it's food yeah he's like christmas is great. He said thanksgiving is my favorite holiday. He's like because everybody gets together, just like christmas. But now you don't have the pressure of did I get them the right gift? Did I spend enough money on them? Did I do this? Did I do that? It's just to be together. He's like so I'll make them a feast if that gets everybody together because I like everybody to be family close.
Speaker 4:Yep, and you know, brian, I have never met anybody with that kind of love and compassion for somebody who doesn't even know. He just is a phenomenal human being and his story is not over. He's still got more that he did for us. That you know. After our part was done and we walked away, he had told us I will take care of him until I can't.
Speaker 3:I promise I will take care of him until I can't, and he did just that. When we went to the funeral home they said that he goes. I've never picked a body up that was so clean that was so beautiful just beautiful.
Speaker 3:He said I've never, ever done that. And he said so when he went to go get him and go down the hallway I guess brian was there and he said it's okay if I walk with you? He said of course. And he said I walked this room and it was just a back room to the back parking lot. He said Clint and Amber, that room was packed full of nurses and doctors and surgeons and you name it, and they were all talking about Chandler and just the fun things and just how much they.
Speaker 3:He talked very little, but what he had to say was powerful and they just loved him. And so then when he went to take him out to the hearse, he said said okay, if I take him out with you. He said the more the merrier. So he came out and he said I promised this family that I would take care of him until I no longer can. And so he said I promised this family that I would take care of him until I no longer can. And so he said that's amazing. And so he helped him lift him up and then he patted him on the casket and said until we meet again, buddy. It was amazing.
Speaker 1:All right. So we are going to talk about grief, faith and just choosing love. So if you can just kind of tell us, how did you navigate the first days and weeks and months after he passed?
Speaker 3:We're still doing that. There wasn't a time that grief is hard and grief hits in so many different ways. Thank goodness that with Clint and I's relationship, we are very. When he is at his lowest, I'm good, and vice versa, and thank goodness for that. Now there's times that we can be low and Not very often, but it does happen. Yeah, but we just hug each other because we just know, and navigating it is, I can tell you, for first few weeks we closed the bedroom door.
Speaker 4:Tyler moved his mattress out of his bedroom.
Speaker 3:Six weeks.
Speaker 4:Put it in our bedroom, so he was sleeping on the floor, and we stayed in our bedroom for six weeks.
Speaker 3:We didn't realize it was six weeks Later, about a year later. We were thinking back. It was like, wow, that had to have been six weeks because of the timing of his college and when he went there from work, you know, it was had to have been six weeks and it didn't. We literally stayed in there. There was not a time other than to use the restroom or to get some food. That was when we got out and the bedroom, their bedroom was scary and I don't know how to explain that. It was scary because he wasn't there and we could walk through and we would see him sitting there. Well, we can't anymore and so we had to shut that door and that was just something that over time, hopefully, we'll be able to open that door.
Speaker 3:We told Tyler, you can change whatever you want in this. This is your room. You can leave it the same. It's how you grieve. And he took all his stuff out. Eventually, after we got through that part, took it all out, except for there was just a couple things he left there. He said he couldn't leave some of the stuff because he would just go into the sad spot and couldn't get out. So you know, he did keep some of his stuff.
Speaker 4:All his Legos that he had put together and stuff was still on the shelf. He left all those there.
Speaker 3:His instrument. He also had his body spray.
Speaker 4:Yeah, that was the one thing he kept on his desk, and so he said I just can't keep all his awards and stuff. That just makes him sad and what really made it extremely difficult was right after chandler passed and we we had the funeral and everything. Three days later, tyler graduated from college and how do we do that? So now three days and so now we're going from just the lowest of lows.
Speaker 4:And now we've got to celebrate tyler and we we have to. I mean, there's just, you can't let him down, right? So here we are again, as parents, having to put all that stuff, compartmentalize it and stuff it away and be happy that's. That's not easy to do at all.
Speaker 3:And that boy. I can honestly say I don't know how he did it but he graduated. Yeah, he graduated like the top of his class, magna cum laude yeah, I cannot think of that word. But he was up there and I said how did you do that? And he said that's how I got through cancer, was I threw myself into school and that's exactly how he did it. He did online classes Every semester.
Speaker 3:Oh man he was. He just threw himself in there and it was very hard for us because there were graduates that were walking through that had their chef hats on and it's like man, they were supposed to be together. You know it's that was extremely hard. The party was extremely hard, because they were should be together. So but at the same time, what was very hard is we have to celebrate tyler and we need.
Speaker 3:How do we change our lives to it's not just chandler and tyler anymore, because people will tell you Chandler and Tyler was one person, it's like one. It's the boys, chandler and Tyler, that that was it. And there's still people who will say well, why don't you go hang out with Chandler and Tyler? You know, because it was always just one name, almost. So that part is extremely hard. Through grief is you want to ask Tyler questions because you know what his answers will be, what Chandler would say, and you just want to hear that sometimes. And you know it wasn't that way. So Tyler did not want to speak of him. He said I love him, I miss him, I just don't want to talk about it, and that was fine and we have to respect that. It was hard and it still is. He does say his name more and his friends talk about it more, so he can.
Speaker 4:His friends have kind of forced him into talking about it more, because they don't stop bringing it up.
Speaker 3:But how we navigate it. I will tell you your first year. You're literally floating.
Speaker 4:You're just in a fog.
Speaker 3:You're living literally a second.
Speaker 4:You're going through the motions.
Speaker 3:A second.
Speaker 4:That's all you're doing, and if you wake up and you make it for five minutes, great. After that, whatever happens happens and you just keep going day by day, minute by minute, hour by hour.
Speaker 3:And that is literally how you have to do it. And there's times that people will mention something that first year and I can't tell you. I don't remember. You are literally just floating the second year. I will say doesn't get better.
Speaker 4:The first year and this is what really bothered me the first year you have a lot of people that show up that want to help, they want to keep you distracted, they invite you to go do things, and it's not always the people you thought it would be, and the ones you thought it would be aren't anywhere to be found, and it kind of breaks your heart because it's usually family members. And but we did have a lot of people that would invite us to go do things, ask us to go do this or that, or want to spend time with us, which helps us in a way of being able to interact, get our mind out of that place for a short period of time. And but yet if they acted different or if they kind of isolated themselves away from us or wouldn't converse with us very much, then it became awkward and puts you right back in that same position of I know why you're doing this. Don't Just be normal, be yourself. That's what we need.
Speaker 3:Be normal. And then that second year, because because someone, they always put it in their head after a year you should be good. Okay, I will tell you that second year was worse because now all those people that wanted to hang out with you every day, they want to do stuff with you. They're not doing that, no more. You know they're not calling and checking on you. They're not, you know. So now you're isolated and you feel like we're the only ones in the world that are going through this. And that's when, yeah, you feel awful, like I mean I would say, why is anybody calling us? How come this is going on and no one's asking us, or you know like.
Speaker 3:And so second year was hard. For that. I think that was the hard part of the second year. And you also, you're still feeling that grief. I mean, it's not every day, it's not. You know, the time is healing a little.
Speaker 3:And then this year has been rough, and I don't know if it's more because Tyler has opened up more, he has shown emotion more, he talks about his brother more, and I don't know if that's part of it. I don't know if it's because nothing's really. There's a lot more time that goes through that You're not so sad. But our main thing is and I think that has helped us, that I don't think Clint at first wanted to do and didn't think he could do was we still go out to see our child every single day. And it may be I love you, I miss you. You know we always say stay awesome, tell everyone we love them, give them big hugs and we'll see you again tomorrow. And that might be all. We get out and it may be hailing and it may be snowing and it doesn't matter because in our we can't do any more for Chandler. We just can't. And here on earth it is hard to give that up. It is hard to Christmas shop for one when you've always had twins.
Speaker 4:It's hard to you know, celebrate a birthday for twins.
Speaker 3:The birthday is the hardest, hardest day of all. It doesn't matter. The death day is nothing compared to that, because now we have to celebrate one and we're mourning the other, and we're mourning the other. That's the worst day of the whole year, so I would honestly trying to grieve and get through it. I would say that you really have to. It's everyone's.
Speaker 4:Everybody's different.
Speaker 3:I think just going out and telling him we love him, that's our effort, that's all we can do for him. We can decorate around his headstone. That's his Christmas. He'll get a little Christmas tree and he'll get some lights. You know, that's all we can do for him, but it feels good to be able to do something.
Speaker 3:You know just anything, and so that is our and it makes you no matter what if you're having a bad day, if you're not feeling the greatest, whatever, it still makes you get out, you make you get up, it makes you get dressed and you make that effort because that's your child and it doesn't matter if he's not there, and it doesn't matter if he's not there. That's what helps us and to me, I feel like that is our meeting place, that's just our meeting place and it makes us feel better and that's one way that we. At first he didn't think he could, and then I was just like you don't have to. You know I don't expect you to come out here every day. I don't expect that at all. And there's times that we are sick and we can't, and we will still talk to him at home and there's always a candle going and things like that, and it's just. Everyone does it so different.
Speaker 4:Yeah, the hardest thing I struggled with was going out. There was as soon as the headstone was set and you see the dates. Those dates are permanent and that means it's. It's real. And I I've told her many times.
Speaker 4:You know, in those first months actually probably the first year my brain processed it in a way that I kept telling myself he's on, he's at school, he's at vacation he's out with friends he's, he's doing things that he's just not home, so and that was just the way my brain would process that's all ours and yeah, I mean we kind of were the same way with that and that was a coping mechanism that our bodies were doing to help process the grief and I think every year we say okay, chandler, it's been two years, don't you think you should come home now?
Speaker 3:Oh wait, you are home.
Speaker 4:Take a vacation and come back and see us.
Speaker 3:That would be wonderful.
Speaker 1:Wow, I've heard that so much with families that have gone through that. It's the same thing and it's how they cope, because that's how you're able to get up and put one foot in front of the other, you know, and to do whatever you have to do to trick your brain and also when, yeah, to help us with the grief, it was almost like around christmas time I'm like what can we do?
Speaker 3:I feel like we need to go back to that hospital and we need to at least tell them thank you. I feel like it was such an abrupt. They were with Chandler for a year and how can we just say nothing ever again. I have to do something, and so it was very hard for us to park in that garage and walk in there. For some reason, we did keep it together then, for some reason we were very strong about doing that.
Speaker 3:And then when we saw the nurses, I mean immediately we opened the door and it was his jailers, mommy and daddy, and they just were from every, every direction and his favorite nurse, of course he starts to bawl and you know it was like okay, and I was doing good and tailed them, so that helped, I will tell you Just going to say thank you. And the doctor, he walked through and he saw us and what was different was there was no mask, so it was very hard for us to even know.
Speaker 4:Yeah, recognize who was who?
Speaker 3:Doctor walked past us and I didn't even recognize him.
Speaker 1:Can you guys put your mask back?
Speaker 3:on, so we know who you are. Can you just let?
Speaker 4:me see your eyes, does this look more familiar?
Speaker 3:Now I know who you are. Okay, yeah, but he did tell us that he absolutely enjoyed being around Chandler and that he said that boy was so strong. I've never seen anyone not come in and complain, at least once or twice, because you don't feel good. He said that he never, ever did.
Speaker 4:Not even on the last trip in no, when I had to push him in a wheelchair on oxygen, he never complained. He just looked at him and said I need to fix this.
Speaker 3:Yeah, he said I need fixed. Yeah, and there was another doctor who would be with him if the other doctor wasn't, and he came when he was passing. He came up there and he said I want to tell you guys that this boy has changed my life. He said not only as a doctor but as a man, and he, I will carry everything that he's done with me because he was leaving, his wife had been transferred, and he said I will always, always remember Chandler. And so that to us was you know, if there's anything that can help a family, if a nurse, doctors, anyone just reaches out, even if it's just a text to send a heart, or it's like they haven't forgotten your son at all. And that's when we decided, uh, that we got invited to a riley grief services and that's when we found that group and that helped so much more than I'd ever.
Speaker 4:You know, it's a free service yeah, yeah, and that's that's the amazing part about it is that it's all free.
Speaker 3:And I think every family needs needs that Yep.
Speaker 1:Oh, absolutely Something that you can be with other families that are experiencing exactly what you've experienced and know the feelings and know what you're going through. And I think that's invaluable.
Speaker 2:So kind of along those lines. I think we may have talked about this earlier, but this type of thing has a tendency to drive a wedge in a marriage, and a lot of marriages don't survive going through something like this. So for you guys, what is it that has allowed your marriage to strengthen through this, instead of being torn apart?
Speaker 3:We are very best friends yeah, by far Very best friends and I think actually this brought us even closer because you know, through life we have our ups and downs. You have Lord, you have the downs, but there's also those times where you know, our relationship grew very strong over this cancer situation, because we've always been best friends, all of four of us. But I tell people as a relationship, be best friends first and not just for a little bit, like just really be friends, because if you're not, a marriage can end so quickly and you know, if you have that best friendship you still don't want to lose that friendship, no matter what. I think because we have been so close and best friends and we've always put god first god, first, always, and so no matter what that that has kept us, all of us, together.
Speaker 3:But our children are just. You know, our children are everything to us and well they've portrayed what God is.
Speaker 4:There's never been a time that and just watching them grow and everything just makes you grow as a family. When they portray that in their lives, that it makes you feel good, that they're living the life that you wanted. But not only that you wanted, but but that has God has has blessed them with and I think I could never go through this alone.
Speaker 3:I could never. I tell him all the time there's no way I would ever want to do this and go through this alone. There's no way I. I told him, even if we weren't together, I would want you there. You know that is our child is.
Speaker 4:I we usually go to the cemetery together, but there are occasions where she'll go out during the day or something, and then I'll just stop there on my way home and I, every time I do that is the worst breakdown I have when I'm by myself. If we're together, we're both stronger together and you can just you feel the power between the two of us, that that, that love and and and Lord's power there together is way more strength than doing it on your own.
Speaker 4:And that's exactly that's exactly what the devil wants is to be isolated.
Speaker 4:So absolutely that's exactly what I was just thinking and we don't. We just don't allow that. I mean, we had some issues early in our lives when we were first together and the kids were first born. That was kind of my fault and I think that was God's way of strengthening us to get prepared for this. As I look back at it because I really didn't, I really wasn't myself, I was just going through a phase that Well, we weren't just having one child, we were having two, and we'd been married one year.
Speaker 4:My head was not in the right space, but I don't remember it. I don't remember 90 percent of what I did, but I don't remember it. I don't remember 90% of what I did, but as we grew through that, I don't know why she stayed with me at the time, but she did, and I just really think that made our relationship so much stronger that it was just the growth that we needed as a couple to be prepared for what we were going to go through.
Speaker 3:And God already knew our story.
Speaker 1:He knows the beginning from the end, and so when we're going through those situations, it's just, it's neat when you can really look back. We've said that you know earlier, but it really truly is All right.
Speaker 2:So, clint, you had said that there were some things that happened earlier in your marriage and you felt like God was earlier, but it really truly is All right. So, clint, you had said that, um, there were some things that happened earlier in your marriage and you felt like God was using that to prepare you to go through this. So how do you think that God can use what you guys have been through here to be a blessing to other families that are maybe going through the same thing? Maybe they're in a fight for their child's life, or or they've been through what you've been through and they don't know how they're going to move forward.
Speaker 4:Yeah, I mean, I don't think it's stuff like this. I think really is exactly how that helps is they can hear how our struggles were, how we managed it, how we were able to keep our faith and put our trust in that, that, regardless of the outcome, that was. The only place we had to stand was let your will be done. The only place we had to stand was let your will be done. And that is a hard, very hard thing to come to that decision.
Speaker 4:And I know both of us struggled with that in the beginning. You know we had our prayers for this and that to be healed and to keep him here, that to be healed and to keep him here. And by the time we got closer to the end, both of us had agreed that our prayers have changed to let your will be done. And that is a hard acceptance to do. But without that faith and building that relationship with God through this, they're going to struggle. And that's the biggest thing I can say is, if you don't know God or if you don't have a good relationship with God, you really need to start working on that as much as you're not going to have really the time to do it as you're going through something like this, that's the only thing that's going to keep you together. That's the only thing that's going to get you through it.
Speaker 3:And surround yourself with people who can be positive, people that you know will always be there for you, because it's hard to trust in those times. It is, but I would say the same. That was a very hard.
Speaker 4:just give it to God, and that was the last of it was just, you know, let your will be done and that was just a hard, that was very hard to do. One of her very best friends through high school and everything, is more like a sister to her that she hadn't had communication with for like 18 years. Right before my mom passed away, she came back into her life and our life and even at that point in time the thought came to my head that I'm glad she is back because we need her. But I really don't want to believe that she's here because god sent her, because we're going to need her, and my mom passed away, she, she, was there for that and then, within eight months, chandler passed away and she is a very faith-based person. She's very Christian-based. Her dad was a minister and she was there every day in the hospital with us, every single day.
Speaker 4:She lost her job she lost her job because of it.
Speaker 3:And we were like go lose your job. And she said that job is not worse.
Speaker 4:No, she said I was. The Lord was telling me that was where I needed to be. And she said I wouldn't have been any other place. And she was. She was a rock for both of us really, and and that's the kind of people that you have to have with you and around you during and after, and she was just an amazing individual.
Speaker 3:If you are a family stuck in this, there is help out there. There really is. And our thing was what can we do? What can we do to do better for our children, you know? So that's just. There's so much you can do. But there's also give yourself grace. There is a lot of emotions that you are going to feel. You are going to feel mad, you're going to feel sad Every emotion you can think of.
Speaker 3:I'm not an angry person, but I will tell you that the day that we found out that he had cancer, I was very mad. I was very mad that the grass was moving. Why were the leaves moving? Why was anyone driving anywhere? Because my kid has cancer, you know. And why? Why does the world move, you know? And that was my anger. I was also mad at COVID.
Speaker 3:Covid was a good thing for us, for the fact that we got to be with each other for three whole months, all four of us. We got all that time together. But it was also a curse you know there was. We couldn't be with our son. We couldn't, you know we. There was so much restriction that my child had to go through this alone. So when you're in that, you are mad and guess what? It's okay to be mad at the lord because he has big shoulders and he knows why you're mad. He knows because you cannot handle all of this on your own and it's okay. Just don't stay there. Just don't stay there because, like it says, when you grieving he's around you the most, he has his arms around you and he's loving on you the most.
Speaker 3:A picture that came to my mind during this was and we would hear that you know the Lord's around you and closer to you now with your grieving than any other time. And I could only picture, you know when, like when we go to the cemetery and things, I picture these angels just all in a circle, massive amounts of them, and there's this big open hole and Jesus is standing right behind and they're listening to our conversation. Listen, chandler, your mom and dad's here, you know, but most of all, know that the Lord knows. The Lord knows, he knows you're mad and that's okay because that's a human emotion and he can handle that and he can handle the sad. He's with you at all times. And so I like to picture things.
Speaker 3:I'm very much a person who loves to picture things that make me feel happy and to know that the Lord has his arms wrapped around my son. There's no other place that I would ever want him to be other than in my arms would be Jesus's arms. So, yes, I think in the middle of this, if you don't have the Lord and maybe it is a hard thing to just go in and say, hey, I want a relationship with you, right, this second, it's easy to do, you can do that. It's also a lot. It's a lot at once. I always tell people, you know, just open up the Bible, go to the New Testament and just open it up. Go to the Psalms, go to, you know, anything that can just you're not going to find anything bad in there and just surround yourself with the most loving people that you know are solid rocks. Because it's a long journey.
Speaker 1:That brought me back to his funeral and we were at the gravesite and the sky. Can you tell me just a?
Speaker 3:little bit about that. That was amazing. Yes, the minister, when he got through all that and he just said Amen, we all walked out from under the tent and I heard this gasp of like oh, look, and we look up and there is a perfect circle of nothing but a rainbow. And it was in April, and usually if people see those, those are actually in late summer, july, august that you can see something like that. They're rare, very rare, and so that was just. It was unbelievable and I said he's home.
Speaker 4:He's home. To me that looked like God's eye, yes, just looking down on us.
Speaker 3:Looking down like, don't worry, I have him. Yes, it was. It was amazing. And you know, I still run into people who will say, look, I still have this on my phone.
Speaker 4:Yeah they took pictures of it.
Speaker 3:It was just amazing.
Speaker 4:And to go along with that. We've had several instances when we've been out there at the cemetery and usually we're at night, where it'll be plain every other day. Nothing fancy about it, the weather's fine, we look up and the moon's got that circle around it and it won't last. It stays there for a little bit and then it fades away and it's gone it's almost like I'm right here, I'm right here yeah, tell me about, um, what comes next.
Speaker 1:So can you tell me a little bit about? I know you guys go every year. Is it just every year that you go to compassion rounds?
Speaker 3:No, actually this was the first time we do go to Riley Grief Services. They have several events throughout. So we have a mother's brunch, and so we will go there for mother's brunch. It's like you and your mom or you and a friend, or something like that, and so we do that. And then there's a time where it's around Father's Day, where we get together Family Day and we go to the ballpark and so we have a family date there and have a picnic and watch the game. And then there's the riley grief retreat and we cannot say enough about that. That is the most therapeutic.
Speaker 3:You are around, and it doesn't have to be cancer, it is. They've lost a child, and so there are ones that have stillborns. There's some that you know. I think ours might have been. No, there was another one that had. Yeah, that was older, but they don't have to die of cancer. This is just all different.
Speaker 3:And you know, people have told us I'm like I don't know what would be worse losing a baby that maybe was three or four, maybe a toddler to a 20 year old, and everyone, every single time, they're like a 20 year old, because that is a lot of memories that you have had. I'm like, yeah, but we've had a lot of memories, so it's just a you know. But to have to be around those people, you don't want to leave, because that is an awesome world, you're not alone. You know it because you're and you go through a lot of therapy classes. So we learned a lot through that and how you know. There were times in the beginning I thought had the flu or just certain ways you feel was just awful and I was like this is really grief, you know, and it was, and they had explained every bit of it.
Speaker 4:And that was nice and eye opening because I was thinking I'm sick or and you know guys, typically they don't really open up much, they don't talk about things, they don't express themselves, and with the retreat it actually gives the guys an opportunity to do that with other people that are feeling the same way, other guys. And to hear, you know, to hear guys actually express what they're feeling, is healing in itself that you're not the only one and you can express your feelings and get those out. And it helps tremendously to have those conversations and know that there's people there that care for you and are there to help, and it's just a really great program that they do to help people.
Speaker 3:And everything that they do do. This is all free. So when you go, I mean you have big bags, whether you have your blankets, you have popcorn, you have, and all through that you're doing things like you can go out into the water and kayak. There's times where you can go up a climbing tower, you can hike, there's. There are so many things that they do and you feel so close to these. We have made some awesome friendships. Then we have what's up there the retreat. There's many times we go to Pottery Bayou and we do pottery, we do ornaments. Tyler came with us this time and just really had a good time. Of course, he's just so funny anyway, he's so quiet, but he's so funny, and so it's things like that that they have different events.
Speaker 3:This compassion round was very awesome that we got asked to do that.
Speaker 3:They said you know we basically what it was was they were trying to tell the nurses and at Riley and everyone that this exists and that please tell families that, whether you know you're you just lost your child or you have years ago, this service is always open to you and you know this is what it is and this is what we do and this is what we do, and so they were saying that well, we couldn't think of anything better than Clint and Amber to come, because we always tell them just how amazing of a job that they do. There's also Women of Riley. That is a foundation that really supports that as well, so it is like a treat anytime you go. So when we got asked to do that, I was of course. Of course I would tell that, you know, because it's basically his story and also a little bit of his Riley story and then what we think of Riley Grief Services. That was very eye opening to the nurses and more just, whoa, you know, just you don't.
Speaker 4:How much the service does for us.
Speaker 3:There's a lot and to know all the things you give us and gifts you give us. I will tell you the one important thing, and this is what I told all of them If there's anything in the world that would mean everything to you, you want to hear your child's name. You want to hear his name. You do not want people to forget him and as hard as it is, that's why I said it's so important for nurses every now and then, just a heart, simply because that means they haven't forgotten your child and your child did mean something to them. And I understand there's a lot and so we don't expect all the nurses and stuff to do that, but when they do, it means everything. There's one thing you don't want and that's to never hear your child, and Riley Grief Services is amazing at that.
Speaker 3:Every single child gets recognized, whether they're there or not. They do the worldwide candle lighting. Every single child. Whether they can be there or not, they're named and they come around, they light your candle and then you get to say your child's name out loud. They are always recognized. There's not a time that they also don't know the rest of your family. So when we go they're like how's Tyler? You know they do that with every family, so that is a very, very important. You know we can do a one-on-one. They cannot give you a med for anything, but they can show you exercises and how to get through that, and that is so important. And just talk to you.
Speaker 4:Just talk to you, be your, your friend, and they're able to do that and they're they're therapists, so they know what to do and how to talk to you to help you through those things and give you suggestions and there's one that is very important to us because she was part of the palliative group.
Speaker 3:Chandler loved the palliative group. Chandler loved the palliative group and you know he would say it sounds scary to get a palliative team. They're so cool, like they were the best group, you know, and they would talk about friends because his name was Chandler and of course they saw on the chart they saw Chandler M and one of the girls, amy, that was on here. She's the best. But she come in and she's a major Friends fan. I mean she's been to the set, she has. I mean. So she walks in the door and she says please tell me, your middle name is Mariel. He goes no, and I said I think he would have just shot me if I named him Mariel. But you know, and he loved them because that's what he would watch Every single time he was in the hospital, was friends, because that made him laugh, that made it fun, you know.
Speaker 3:So they were awesome and one of them ended up also working for Riley Grief Services as well, and she kind of goes back and forth and I told her she was in the room when he passed and I said you are a very important part of us and I cannot tell you how grateful that I was and that was one of the things I talked about. You know, when I looked around at everyone there, it was unbelievable because not only was our family close family, but there was the palliative group was there, the doctors were there, his favorite nurse, his favorite, everybody was there and I knew because Chandler wasn't, like I said, one to really talk a whole lot. He loved Riley. He actually just felt comfortable there his last week of life, like he wouldn't sleep at home very well because he was low oxygen.
Speaker 3:When he got there he slept like a baby, like he didn't have a care in the world, and he felt comfortable there and so we knew when he was passing that he was smiling because he knew these angels here on earth have just sent me. They are amazing and I don't know how they do their job. I really don't. I couldn't imagine, and so I said it takes angels to do this, because there's no way I could keep watching children fast. I just couldn't. So they're very special to us, very, very special. They're very special to us, Very, very special.
Speaker 2:What an incredible resource that is. But you're also involved with the Elevate Foundation, yes, so I know we've talked a little bit about that before we started recording, so can you share with us a little bit about what the Elevate Foundation is and what its mission is, how can people get involved and what are you hoping to accomplish through that in the coming years?
Speaker 3:Elevate came around in a very, very special way. When you have cancer your child has cancer you're reaching out, you are trying to find anything and everything to fix. Your child has cancer, you're reaching out. You are trying to find anything and everything to fix your child or, if not, like what is this medicine? Does anyone else in the world's child have this? So we were working with riley foundation but there was a lot of there's a lot of red tape when you go through hospitals and things like that.
Speaker 4:Their minimum donation was $25,000.
Speaker 3:Wow, yeah, and so it's very hard to you know how can we make a difference? I don't have $25,000 in my pocket right now, but there's a lot of different foundations out there that it's more about fundraising, fundraising and I'm like. But I want to do more than that, Like I want to help more than just a fund, because you can throw all kinds of money at cancer, but where does it go and how does this work?
Speaker 4:So if it's not going to the right research, then it's just getting wasted.
Speaker 3:And there was a day that I was making pumpkin rolls because I do that every year for a fundraiser and I had this urge like just pick up the phone and text her, because it was someone from Elevate and she had wrote on my Facebook. She said for Chandler, and it was just a very nice message and it was like, wow, she remembered my child and I wasn't even involved in this. And it was like, wow, she remembered my child and I wasn't even involved in this. So I picked up the phone and I wrote her. And the funny thing is before that we have a candle that used to be at the cemetery with Chandler and it's set from dusk to dawn and it will do that. There are times that candle will pop on and it seems like it's right when we need it, like right when I need the most. And so I had that urge of just pick up the phone. Just pick up the phone and I'm not usually one that does that and tears are streaming down my face and I turn the candle goes boop and pops on and I said, ok, son, ok, I've got this. So I got on there and I was just kind of asking how do they do their things. I don't know what it's about. All I know is I've heard your name. His doctor has mentioned their names and the different foundations to reach out to them. And so I reached out and I said she goes, well, it might be easier if you just call me. So I was a mess and I said, okay, amber, pull yourself together and call her. So I call her best thing in the world. Like it felt like I knew her for years, and so I said I need to know what exactly does Elevate do, because I don't want to always just give money, I want to do more. And that's what Elevate does. They do research, they do advocacy, and that's exactly what we need. Of course we're going to give money, of course we are going to do fundraisers and of course, like there has to be money, there has to be money to even run a foundation, but there's more. And so I just want to tell you guys a little bit about what this is.
Speaker 3:And Elevate's mission is to dramatically improve the lives of those diagnosed with childhood cancer, from diagnosis through treatment onto survivorship and, in some cases, the end of a child's life. And how is Elevate doing this? Scientific research. Elevate is interested in the first scientific research investment into targeted therapeutic drug developed for rhabdomyosarcoma and osteosarcoma, directly with Lou Staccato at Indiana Biosciences Research Institute. Elevate has been collaborating with the Winking Warrior Foundation to help maximize the opportunity and are excited to announce even more about this investment in the coming weeks. We're very excited about that. That's one step forward as far as legislation goes. We've actually wanted to open up a account for pediatric cancer account for pediatric cancer and Elevate is a very proud member of the Indiana Cancer Coalition, alongside other families, coalitions and other childhood cancer nonprofits to push the crucial House Bill 1453 forward, which is now in the Senate.
Speaker 3:Not only is Elevate working to bring families and foundations together in Indiana, but also to drive similar efforts in other states, creating real change nationwide. And through our Elevate community, we have Elevate Voices. Elevate Voices came along because there was Elevate Kids, and Elevate Kids were the little kids. Well, the founder, which is Robin Spoon, her son Angel, their son had Ravno, and so she was like you know, we need something for older kids because now there's been a lot more. So Elevate Voices shares the stories of survivors and honors those no longer with us. It's Elevate's platform dedicated to the unique and powerful stories of those whose lives have been profoundly impacted by childhood cancer, and more stories from survivors and families will be coming out soon. So Chandler was the only one who's had started that, and now they've been adding more, which is so he is the face of Elevate Voices.
Speaker 3:And then we also have the Elevate Kids, and what that is is there's a platform to help childhood cancer families make the biggest impact. Elevate believes that we should let kids be kids, which means to us that they shouldn't have to worry about the hassles of adult life and beating their own cancer. Instead, we believe that kids should be able to enjoy their childhood and all the innocence that comes with that. We also do Wilms and rhabdo. That is what, excuse me, that started it, because there are some in this group that had Wilms tumor, which also is one that you know it's bad just as much as rhabdo is. It's very hard to find treatment for that, and so they come together and that was what our main focus was, because, of course, we had the founder's child had rhabdo as well.
Speaker 3:We have work groups and they have two main missions and within the advocacy committee, and one is to create useful educational materials and programs to help families better advocate within the medical system on behalf of their child. These high quality education materials are available on the Elevate's website and the YouTube channel. And check out all these incredible webinars created exclusively for Elevate, with the help of experts in their fields, who are empowering families with you have Permission for a Second Opinion, which not only helps childhood cancer families but anyone seeking a second opinion. A lot of people feel that when you're in that you don't think that you can have a second opinion.
Speaker 4:Yeah, your doctor's the boss. Whatever he tells you, that's what you're stuck with.
Speaker 3:And please know anyone out there that you always have the right to have a second opinion, and many times you want to do that, because even though you do trust your doctor he's great doesn't mean that another hospital, another facility doesn't have something else that maybe they don't have here. And this month is actually kidney cancer month, and during this month a second webinar has been now released and, and it's called Understanding the Genetic Puzzle of Wilms Tumor, for Genetic Expert Joyce Tannenbaum-Turner from Children's National in DC, to help educate families on why getting your entire medical team on board to answer these questions early on in diagnosis can lead to better life outcomes. Early on in diagnosis can lead to better life outcomes. The second mission of our work groups is enabling patients, advocates and caregivers to instigate improvements in therapy development for children diagnosed with cancer. You too, can be an advocate for these families and children and adolescents.
Speaker 3:Elevate welcomes all those impacted by childhood cancer and those whose hearts have been open to this community to be a part of the collaborative effort is dedicated to making sure we let kids be kids and expedite more effective, less toxic treatments. Elevate values your time and talents If you want to learn more about getting involved, whether you are a child cancer family or not. Elevate would love to hear from you. You can email at info at elevatechildhoodcancerorg, send a message or any of our social media channels Facebook, instagram or LinkedIn or visit our website at elevatechildhoodcancerorg and send a message. We have many volunteer opportunities available.
Speaker 1:So, as we close out today's episode, I just want to take a moment to really thank Clint and Amber Nelson for sharing not only Chandler's story but their own. The strength, faith and the love they've shown in the middle of the unimaginable loss is something that stays with you. Their willingness to keep fighting for Chandler's legacy for other families and for a future where no parent has to walk through what they did is nothing short of inspiring.
Speaker 2:Yeah, what an incredible example of love in the Hard. So if you're listening today and you are someone who has experienced deep loss, or if you're in the middle of a battle right now, I hope that today reminded you that you're not alone. There is purpose even in the pain, and there is hope even when it feels far away. And so thank you for joining us on Love in the Hard. Until next time, take care of your heart, love your people deeply, don't be afraid to hold on, to hope and remember love is worth it, even in the hard.
Speaker 1:God bless. Hey friend, thanks for listening. If you got something out of this episode, be sure to follow or subscribe to Love in the Hard on Apple Podcasts, spotify or wherever you listen, so you never miss a new episode. Please take time to leave a review, especially if you listen on Apple Podcasts. This will help more people access honest conversations about building lasting relationships, resilience through life's hardest moments and mindset shifts to overcome self-doubt.
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