Tony and Kelly Trent share their story of grief and inspiration from the loss of their son Tyler

Tony & Kelly Trent discuss their journey of grief after the loss of their son Tyler to a rare bone cancer. Tyler’s story is unique in that his story went national. Tyler’s story has been told on TV, videos, articles and a book. He is still an inspiration to millions and his name and likeness continues to raise millions of dollars for pediatric cancer research through the Tyler Trent Foundation. 

The Trent’s have been so thankful for all the care and love shown to their family. At the same time, they are grieving parents. Like all of us who have lost a child there is a grieving process that can take you to dark places in life. Tony and Kelly talk about the impacts the grief took on their personal lives and their family. Their willingness to candidly share their personal story of grief aligns with what so many of us have experienced. As Kelly say’s “grief is brutal”. 

Grief is personal for each of us. The support people in life that show up in unexpected ways can help impact the recovery. Tony and Kelly, like most of us that have lost a child, are a work in progress on the recovery journey. Their story reflects the dichotomy of conflicting views that can both be true at the same time. An outside look at their life may view all the positives that have come as a result of Tyler’s journey, which is true. The other side that is also true, is the personal grief and pain that loss of Tyler has impacted on their family and personal life.  That journey of grief has altered their lives forever.

Their story is inspiring that over time the strongest fundamental core values in life can guide you on the road to recovery. For the Trent’s; faith in God, marriage, their family and a mission to eradicate the cancer that took Tyler life have helped keep their focus on the most important things in life. The road to recovery is long and challenging with daily obstacles and grief that can smack you at any moment. 

To learn more about the Tyler Trent Foundation go to https://tylertrentfoundation.com

Transcript

Tony and Kelly Trent Interview

Rick Williams

I'm here with Tony and Kelly Trent, and I'm going to let them tell their story about their son who went through a similar experience of Richard with, a rare cancer and then the work that they've done afterwards. I will let them introduce themselves and tell their story.

Tony Trent

First of all, Rick, we really thank you for allowing us, Kelly and I to be a part of this interview and podcast to hopefully bring others hope and see that life is not always what we hoped and dreamed it would be, but with God's grace there is sufficiency there. And so thank you for having us on. 

Kelly Trent

For sure. Yeah. Our son, I'm Kelly. This is Tony. Our son Tyler was diagnosed with osteosarcoma bone cancer when he was 15. As you can imagine, it was beyond shocking and quite the journey, but his first diagnosis was in July of 2014 and he had the protocol treatment that they do for osteosarcoma and had about 16 months of, I wouldn't call it remission, but no evidence of disease as they say. And then it returned in the spring of 2017.

And at that time they really didn't have treatment. They didn't know what to do or what combination of drugs and things like that. Basically, you're grasping at straws and just trying things and hoping that it works. Because with this kind of cancer, they tell you in the beginning that it literally, it either works or it doesn't.

And so he started taking some oral medication and doing some other things. This time, the first time it was in his humerus bone and the second time it was found in his hip and pelvic area. And, so he went on doing that. He ended up having to have a pretty major surgery to replace that. You have to remove it in order to survive or have any chance of survival.

And so we did that and he at that point he was, it was his  senior year in high school. So he had graduated and it was the summer after graduation, he was heading off to Purdue University. So, it was brutal. But we got him moved in and all was going well under the circumstances.

Until late winter early spring of 2018 when it was found again on his spine and it was inoperable. So at that point, we knew that he wasn't going to live. It was more a matter of how much time did he have? And in May of 2018, the doctors told us two weeks to two months. But Tyler went on to live until January 1st, 2019 when he lost his life.

Tony Trent

First of all, I'm sad that you're probably listening to this podcast because it's some type of maybe significance of hard thing that you're going through in your life right now. Either with your child or whatever and loss of suicide or cancer or whatever it may be. I'm sorry that you are going through this. Tyler's drive and desire because he lost his life and he knew that he was going to lose his life, was to do something about it. And for, in our circumstances large tumors there isn't a lot of treatment for those, as Kelly mentioned. And so his desire was to do stuff for research. Pediatric cancer is well underfunded. Only 5 cents of every research dollar from the federal government goes to research for kids. And his drive was to do what he could do. 

This year, usually once a year, 11 new therapies are invented for adults every year since the late 1950s, 11 have been invented for kids, period. And so we formed the Tyler Trent Foundation to try to raise money for pediatric cancer research.

It takes a lot of money to do that. His name likeness has raised over $3 million. And then as well he wrote a book about his life called The Upset. If you're looking for something that might bring you hope or encouragement you could go get the upset@tylertrentfoundation.com.

Rick Williams

Did you know anything or have someone affected at all by cancer before Tyler's diagnosis, because we weren't either. It was pretty shocking. You might discuss how that affected you when you first found out, but you might just speak to that for a minute  

Tony Trent

Yeah, so our family was super healthy. We had never been to a children's hospital. We've never, we were super active. We always cared about our health. And so you might realize or not be surprised that we were super surprised to learn that Tyler had cancer and to learn that, is a life changing event.

And we always say that my child had cancer, but our whole family got cancer. And it really changed the dynamic of our family. Our two other boys his middle brother is two years younger than Tyler, and he was close to Tyler. And there was a lot of heartache that went with that as well.

Him struggling running away from home a couple of times, and dabbling in things he shouldn't be dabbling in. And our kids are living with other people. I always said, Hey it's a blessing to be able to have dinner as a family, and it really was a blessing. To have dinner as a family. 'cause Kelly was spending a lot of time in the hospital with Tyler, and then the youngest brother, Ethan, is calling him crying because he doesn't have his mom.

And it's just as every you can imagine, how devastating it was for our family. 

Kelly Trent

Yeah I would agree. And I had never had any cancer in my family, really. Tony had a little bit with his dad, but nothing that was life altering. And he's still alive today, but to say that I was shocked is an understatement.

And I'll never forget the day that we were at the sports medicine clinic, having we'd gone in for an x-ray to Tyler's arm had been bothering him and he was getting ready to start basketball season, summer basketball. And so I thought, man, we need to, we need to go get this looked at.

We were in there and after the x-ray, the doctor came into the room and he was shaking his head and said, circled something on the x-ray screen and said, do you see this? It should not be here. And so he expedited an MRI and at that time told us what he thought it was. And used the word cancer and it almost paralyzed me. I didn't know what to say and what to do because in that moment you're also trying to protect your child. Like it's not even about me in that moment. It's about him and trying to keep the brave face and be optimistic and take care of him. And he, so then he went on to have the MRI and I wasn't five minutes from leaving his office and the doctor called me and said I've looked at his MRI and while I can't be certain that it's, I can't be a hundred percent certain that it's Ewing sarcoma, I'm quite confident it is. And I was speechless. I didn't even know what to say. I didn't know what questions to ask. It was incredibly overwhelming.

So thankfully, in me like being paralyzed, I had Tony who was our advocate and asked all the right questions, lots of questions. But I think like trying to describe the shock of hearing that is almost indescribable. 

Tony Trent

And not only that, but the pain that you see in your wife's face when you see her for the first time after learning that your child has cancer is undescribable as well. And something that's seared into my brain. And hopefully I never have to have that, that look again because, I had it again when we told Tyler for the third time, there was nothing that they could do. And, my gosh, I could literally, take myself there right now and start crying because it's so painful.

Rick Williams

So my son, I was extremely proud of how he handled the cancer. He was probably stronger than we were. Never complained about it, really wanted to live life. And I know, Tyler was celebrated for how he went through that. But talk about your journey. I know as a parent when after he passed, there's a time that even though there's celebrations about how they handled things and people, complimented as a parent, it just kills you inside. And so maybe talk about your journey from when you lost Tyler to where you're at now, and maybe some of the ups and downs as people go on this journey that you never really recover from, but there's ways that you manage it differently and maybe just share a little bit about your journey through that grief to where you're at now.

Kelly Trent

Grief is brutal. And after Tyler's passing, we were, because his story had gone national and grown in interest in popularity. We were doing all sorts of things  in his honor, in his name, from the White House to doing, scheduled to do a convention with Drew Brees. It was like one thing after the other people just asking us to come to their businesses or a lot of things with Purdue and talk about our experience and our church, wanting us to share up front, different churches upfront in different churches as well. And so we were super busy. And I just, I'm a processor, so I had no not only did I not have any time to process, I'm also an introvert at heart.

And we would go do these things and I would come back and it would take me days to recover from it. And then to even start thinking about the fact that, it was real. I really lost my child. Like this is real life and feeling like I never really got a chance to process it. And then about a year out, I started just not even wanting to be here. Like just. I didn't want to be here anymore and I was overwhelmed. And I did turn to drinking. I turned to alcohol just to numb the feelings. And as it was like, as soon as I started thinking about it, I just didn't want to. And so that was a journey in and of itself, getting to a point of releasing that and, I'm a person of faith, I'm a Christian, and part of it was like, because Tyler was so strong and had such a brave face, you feel like you should be too. And then you add in the fact that you're a Christian and it just feels like you should be able to handle it.

We have the Lord, I love God. He's good in all things, which he is, but. I was finding myself questioning that. And so turning to alcohol made me just not think about any of it. But now, I'm, our marriage clearly went through a really hard time during that. And we just handled our grief so differently and, when I finally came to terms with the fact that I was abusing alcohol to mask feelings, I knew I had to stop that. And so by the grace of God, I got to a point where I did and started to deal with some of the feelings and the things that I needed to deal with. And while it was the hardest thing ever for our marriage that we've, obviously the death of a child, but then even me and the things I was going through, the hardest thing in our marriage ever. At the same time, the recovery from that has been the best thing for our marriage. Just as I'm processing the grief, I'm also processing our marriage, to be honest, and what that looks like and I think in within that, Tony and I really got to know each other on a deeper level and got to understand each other on a deeper level. And we are more vulnerable with each other. And so the healing that has come from it and that God has given us is a huge blessing and just such a relief. And of course we continue to grieve. I don't think there's a day that goes by that I don't think about it multiple times a day.

And, there are times when it's harder than others. I find myself in church singing the songs about how good the Lord is and you know what I question? I find myself not being able to sing even now sometimes. Because it just brings up so much emotion and questioning, and I think it's okay to question. But I also think it's just as important to look to all the things the Lord has done in my life that has just done for me and to meditate on those things. So yeah, or the grief, there are just times I tell people that the grief is far more acute than other times. Like singing in church, like his friends getting married or having babies, even family events that you look around and everyone's there and together and we just know someone is missing, always missing, and that's really hard to handle.

But by the grace of God and the support system we have. We're managing. And so it's not easy, it's hard, but there's growth. 

Tony Trent

Yeah. Someone once told me that grief is a lot like the waves of the ocean. Sometimes it comes in hard and fast, and sometimes the ocean is like glass and the time of the span between the waves. Is the span that we either are going through something hard or something good. And so, as Kelly mentioned I think what made it even harder for Kelly is that she was an incredible caretaker of Tyler. And she was there for him all the time. She raised our kids. She did not work. So she was home with them the entire time and she just had a special bond with our kids that I'm not saying like other women can't have because they work or whatever. I'm not passing judgment there, but I'm just saying that she had a special bond and that she was there for Tyler.

So after Tyler passed away, she lost her purpose. And being there as a mother for my child or our child. And it was incredibly hard. In fact, it was probably almost just as hard as having a child with cancer as it was after he passed away. Cause I'm more, I'm an extrovert and wanted to do everything I could to take advantage of Tyler's story.

And so a lot of what Kelly had shared is a lot of my responsibility, and it's a lot of how I wasn't a good husband to her to watch over her and to keep her and to see that she had a need. And I ignored it. And as Kelly mentioned, we learned a lot about each other through that and how our marriage really is a miracle that we are still married. 

And just to speak a little bit about Tyler and how strong he was, he could see the pain that Kelly and I were going through and he wanted to be there for us, ironically, and he wanted to be there to not complain because he wanted to try to encourage us. I feel like just like cancer or suicide or whatever isn't fair, a lot of who we are as human beings and how we decide to make decisions after hard things happen can help you get through the hard things. And you can either choose to make it. Most out of it, or you can choose to go another direction that might not be as encouraging to other people. And so Tyler wanted to encourage other people with his story and wanted to make the most out of a really hard thing. And I know I mentioned it earlier in the podcast, but I highly encourage you if you're going through a hard thing to go get his book, The Upset. I think it would bring encouragement to you and help you through some really hard life decisions and just how much wisdom he had at the age of 16 years old is incredible.

Rick Williams

I know as a father sometimes you feel like you have to be strong for everybody else. And it took me a lot longer to realize I had to grieve. I didn't know if you experienced that. Trying to take care of everybody in the family to make sure they're okay. And sometimes you put walls up. If that's the case go ahead and talk about that. 

Tony Trent

Yeah, no. In fact, Kelly mentioned that she crashed, I crashed. I felt like I was really strong as a dad the first time we found out that Tyler had cancer and Tyler wasn't so strong.

He tried to take his own life. Kelly had to sleep with him and to just be there for him. And I believe that Kelly and I were strong through that, really, honestly. We had so much support from people in our church and people in small groups, and we had people all over the country, neighborhood. It was just amazing the support that we had. And then when he got diagnosed again I just like, why, God why did you not hear our prayers? Why did you not answer our desires of our heart? And just struggled big time. I'm a little bit of a control freak, so I was trying to control absolutely everything.

And it was the control causing a lot of havoc with my relationship with Tyler because I was trying to get him to do certain things. Maybe some eastern medicine versus western medicine. Just to add to the treatment and taking him all over the country, flying into California and just doing everything I possibly could as a father.

And it wasn't until the point where I just said, okay, God, I'm going to let this go and I'm going to just trust you. And if you, I know that you're, that you have the power to heal him. And if you choose not to heal him on this side of heaven, then that's okay, because I know where he's going and we are on this earth for just a short amount of time.

And it's one of those situations where I'm hurt as a father to lose my child, but I know that this is not the end. It is not the end. And Tyler would say all the time,  either I'm here with the people that I love, or I'm in heaven with Jesus. And I don't know where you're at listening to this podcast if you have a faith or not But God has a purpose for you in your life too. And God has a purpose for all of us. And it may not turn out the way we want it to turn out, but he has a plan. And he created us and he made us. And we live in a broken, fallen world. And because we live in a broken, fallen world it wasn't God's original plan for us to have this.

He created an environment in that Garden of Eden for Adam and Eve to live, and they chose to sin, and that sin got passed on to us. And I know that I'll get to see him someday again. And there's a lot of times where even raising my other two adult kids I still feel hopeless and have to rely on God for wisdom to help me with that. And sometimes I'm right and sometimes I'm wrong. But, there were times where I wanted to just leave my family and move away, move out west, and I would take my scooter. I had a motorized scooter just to get away and just to have reprieve from all the grief and on purpose try to hope that a car would hit me and kill me.

And so I hated life for a long time and it wasn't until I took a sabbatical and worked on my own stuff that helped me to get through the hardship and to realize that, that we could make the most out of the story. And try to bring encouragement to others and try to help raise money for the underfunded cancer research so other families don't have to go through this.

Rick Williams

So one of the things that for me, looking back in retrospect, we had so many people that supported us, from bringing dinners, taking us out on their boat, helping with my son's house. Things that you really appreciated the time but when you look back in retrospect. Those people made an incredible difference in your recovery. And they were there before and after. It's a special gift to be able to do that. And maybe just talk about some of the people or groups. For us it was obviously family, friends, our life group, our church. Maybe talk about the people that really may have made the biggest impact. Helping with recovery or if someone's going through it, groups they might reach out to.

Kelly Trent

Yeah. We were, from the very beginning the amount of support and help and love that we received. Was off the charts in my opinion, and we were fully surrounded. There, I'm sure there are so many things that went on that I don't even know about that we're taking care of.

But basically anything we needed, we had or had taken care of and, and that was hard, for people who are able and want to be able to do the things and even want to be able to control the things or whatever. But I remember someone saying to me one time, for you not to let that person do that you are withholding a blessing from them to be able to do it. And that was really helpful. But yeah, our family, our small group as well our church really just the, the school I homeschooled, but we were involved in a co-op and just the way the school showed up was amazing and I never want to take for granted what we had. Because I know there are people who don't have that. And that's heartbreaking. I can't, I just can't imagine. And so eternally thankful for the friends and family that took care of us in the darkest season of our life.

The people that you knew would show up did. And I also think. With each, because he had three different diagnosis, with each diagnosis, it shifted and changed some. There were certainly the steadies and the constants that were always there. But, I look at it, I can look back at it now and see that there are some really special friendships that have been born out of that.

That people that, yeah, have surprised me beyond have to, to when it's you have people, expects is the wrong word, you have people that you can, you're pretty confident they're going to show up for you. You know your relationship. You know who they are in your life. But it's the people that you don't expect or that just come out of the woodwork, so to speak, to love on you and encourage you that really make a mark in your life.

And I remember one story our, Laurie, one of our piano players at church. We knew each other, we were friends. I wouldn't say there was an intimacy there at that time. And she just used, she became one of my biggest encouragers. She would even play the piano and sing and send me audio messages. She would text me on a Sunday morning and tell me I'm singing this for you, or I'm playing this for you with in mind. Or she'd even, we'd make eye contact or in church and I knew she, those are just situations that I'll never forget. They're just etched on my heart and there were several of those.

Tony Trent

So we are very blessed to be in the position that we are and just. Praise God. Praise God that we had our family and friends. Yeah. And just to add to that too, I mean we had people give us vacations, vacation homes. Tyler was able to go to Hilton Head and watch turtles born on the beach and people would pay for that. And I remember we got a huge stack of gift cards to restaurants and I just remember feeling incredibly loved. Incredibly loved. And people don't realize that when you're going through that, that hard, hard things in life and they give you a gift card, even just a gift card, how that makes you feel and how loved it makes you feel.

Kelly and I try to do that now and blessing other people and returning the gifts that other people gave us.

Rick Williams

So as a final insight, losing a child can rip families apart and you have other children that are living in the present. And so maybe just talk about how it's affected your family dynamics. Things that you guys have done to grow closer together or things that you've navigated to not lose sight of Tyler, but yet still continue growing, living, encouraging other children, and maybe just share some of your insights and thought on that. 

Tony Trent

Yeah. I would say that it really broke our family. And I say that the brokenness is still there. It's getting better, but it's still there. And so we are working on six years out and we're still working on the brokenness. And the things that we try to do as a family is take trips together to build new memories.

Not that we're forgetting Tyler, but that they're grieving as well and different ages are grieving differently. And then, just making the most of the relationships that we have with them. And, both of our kids, they're completely different. And so we have to think about how we do that with them.

Tyler's story was so large and so big, and public. Public when I mean that, when I'm saying that, and honestly it still has a lot of meaning for people and so especially my youngest, because he's at Purdue playing football he doesn't want people to even know he's Tyler's brother in some senses because he doesn't want to be treated any different, he doesn't want to be treated special.

He wants to prove in his own way. And there's a lot of, there's a gate up at Purdue in his honor, and there's the cancer center named after him. So everybody on Purdue's campus for the most part, maybe some of the students don't, but all the faculty and everyone knows who Tyler is and his story. And I would say that as well for Blake, he just, sometimes he doesn't tell people because he just doesn't want people to know and draw special attention to them, and they want to just pave their own path, if you will. 

Kelly Trent

Yeah. Yeah, I agree with Tony.

It took our family to the depths of really hard things and brokenness. I am not sure I can even talk about it without crying, but having to deal with our family unit and the hardship that it's brought has been about equally hard as loosing Tyler. You are just doing your best to find ways to care for each of them and their differences.

I feel like Ethan and Blake were just different in how they managed it as well. And you have my middle son, Blake, who was a middle son and he was sandwiched in between two very outgoing, capable, good students, lots of friends, lots of activities , liked sports, loved sports, and he wasn't like them.

He was introverted, more introverted. He only wanted a few friends. He didn't want the big crowd, and he certainly didn't like the spotlight and did not want the attention. He didn't want to have to deal with the attention being on him. Even before cancer, Blake was in a hard spot in dealing with some of that.

So this definitely magnified it. And if you read the, if you would happen to get the book, The Upset, he writes his own chapter in that and explains some of what happened during that. And, then I had Ethan, who, Ethan is the pleaser. He hates to see us sad or upset or having a hard time.

So basically, he did everything he could to make sure everything was always okay. Which then means he's not really dealing with his own feelings. His parents are just trying to, and this they're adults now, or young adults. But at that time, you're just trying to shepherd that and be there for them, and it's an area that you just don't know what you're doing and you don't know how to get to them and reach them and shepherd them.

It was just, I feel as a family, we just went our separate ways during some of this and are finding our way back to each other. We still did things together, but it is just, even now it is not the same. It's not, without Tyler. So, we are still figuring out what that looks like.

It is getting better. I stand confidently today saying we have good relationships with our boys. It's not that necessarily, but it's not only been death of a child, but it's been brokenness of a family. And so working through that and continue to continuing to work through that is real. And even though there was so much support and so much media attention and really amazing things that have happened out of Tyler's life and his story, there's a lot of hard and a lot of, just pain and uncertainty, that you still deal with that people don't see. And the book talks a lot about that as well. And we're still managing that. When you see us out and about or doing our thing with the foundation or the golf outing or in interviews or talks. It is wonderful and I'm so grateful for it. Tyler has left us with a, eah. We joke that he left us with a mission and we are honored to do that. But you go back to real life, you go back to the day in and the day out and it's hard. So yeah, I would say it is just, it's a journey and we're still figuring it out and, there are, by the grace of God, we will continue to grow as a unit, family unit of four and grow towards each other and towards the Lord.

And it's heading in that direction and I'm so grateful for that, but it's hard. Yeah.

Rick Williams

I really appreciate you guys coming on and sharing your story. It's the goal of this is to help people that are just starting through this process and something you don't wish for anyone to have to go through, but. Unfortunate reality is that it does happen. So thank you guys for coming on.