170: Deliece Hofen: A Force To Be Reckoned With: A Woman’s Journey From Education To Foundation, What Her Experiences Of Pain Have Taught Her, And How Hope Is Always Possible
In the face of cancer, we can think that all hope is lost. How do you continue to find a reason to keep going, especially when your loved one is fighting for their life? In this inspiring conversation, Thane Marcus Ringler sits down with Deliece Hofen, the President of Braden’s Hope for Childhood Cancer, to share her messages of hope and promise for those whose lives have been affected by this disease, in one way or another, and to live despite it all. She tells us the story of how she went from being a former teacher to starting her own foundation, recounting the events where her youngest son was diagnosed. In the midst of her circumstances, Deliece continued to see life brighter and hope as always possible. She shares that same perspective with us and the lessons pain has taught her, believing that though cancer can take life, it cannot take away how you live.
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Deliece Hofen: A Force To Be Reckoned With: A Woman’s Journey From Education To Foundation, What Her Experiences Of Pain Have Taught Her, And How Hope Is Always Possible
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I am excited as I usually am to share this interview with you. I have on the show Deliece Hofen. She is the lucky mother of two boys, Braden and Zach who inspire and keep her grateful, happy and hopeful every day. The Hofen family has had quite a series of events that have required perseverance. Their youngest son, Braden was diagnosed with Stage 4 high-risk neuroblastoma, a type of childhood cancer, when he was three years old. Deliece is a former teacher and a principal in an elementary school. At the time of the diagnosis, she was a director of human resources for the Blue Valley School District. Braden was given a 30% chance for a five-year survival at his diagnosis. Deliece left her career and began a new career that she would never have chosen, that of momcologist, as she frames it. With the extreme lack of funding the childhood cancer had received, Deliece, her husband and their faithful friends started a 501(c)(3) organization named Braden’s Hope For Childhood Cancer to change those odds by funding research to find targeted treatments to shut down the activators of childhood cancer.
They have raised over $4.1 million for that cause. The organization also continues to work to raise awareness about childhood cancers so diseases can be caught at earlier more treatable stages. Braden had one slim chance at survival after cancer had been repeated a second time and that was to have a bone marrow transplant. There was only one match in the entire bone marrow registry, his then ten-year-old perfectly matched sibling, Zach. Zach donated his bone marrow in the hope of saving his brother’s life. To date, Braden has been in remission from both of his cancers.
Deliece describes her life as blessed beyond measure because it’s filled with love every day. She knows that she is enabled to wish the cancer past and present away, but she believes that with hard work, perseverance and hope, the future can be brighter for the thousands of children, women and men who are yet to be diagnosed with cancer. Deliece shares her messages of hope and promise to others to uplift and inspire them to continue to live despite their circumstances. Cancer can take life, but it cannot take away how you live. I can’t say enough about Deliece and the woman she is.
This interview shines a light on the amount of hope and character that she has as a woman. We talk about so much, including how to develop the mindset of hope, her background and childhood, the importance of curiosity and wanting to grow, learning wisdom from kindergartners, what to focus on in education, facing extreme trials with her family, facing cancer with her son and herself, staying motivated, the work they do at the foundation, the bootstrapping myth, and much more. This is a conversation that is sure to fill you with hope and inspiration. Deliece is a woman who has been through far more than most of us can imagine. Enjoy this insightful and hope-filled conversation with Deliece Hofen.
Deliece Hofen, welcome to the show.
Thank you for letting me be here.
It’s fun to be here together. It’s been fun learning about you and your story of research and diving into some of the references. I’m excited because this conversation is going to be fitting for the time and era that we live in now. One of the things that a lot of people mentioned about you and mentioned as one of your strengths or a descriptor is this idea of hope. When did you first become a person of hope? As people that are familiar with you and your story, most people would describe you as a beacon of hope or inspiration of hope. When did being a person of hope first enter the scene for you and do you resonate with that phrase?
It makes me humbled to hear people say that I am a person of hope because that is truly what I would hope to be. Hope is something that you get through your lifetime. That’s been a mindset that we’ve developed through my lifetime, through my childhood and growing up into adulthood. It comes from the perspective and the mindset from which you grew up with. A lot of that is a credit to my parents, my family, my friends, my church and the community groups I’m involved with that helped to cultivate that whole feeling.
When things in our lives switched over where there were some harder times, some more difficult journeys to travel through, then I had that to pull from. I had that toolset in place in my life that I could draw from to get through that. That’s where the whole thing started. I can’t say that it started when all of our difficult things came into our lives. It started way before then. It’s something that you have to develop. It’s something that you have to consciously be aware of and choose. You can choose to have hope or not to have hope. You can choose to be a person of hope or not be a person of hope. You have to cultivate that continuously and that’s not always easy to do.
The year 2020 has been a year where more people are feeling hopeless rather than hope-filled or hopeful. When you have conversations with people in your life and given the times we’re in, how do you talk about hope with people that are feeling hopeless?You have to embrace the hard times and negative feelings. Click To Tweet
It is a hard time. There are many changes and many things that are not as we envisioned them being. I have one son that’s a senior. All of the senior things that should be happening are not happening. There is no homecoming. It’s not the same. They’re not going to school every day. They’re doing a hybrid model now. I have another son who has special needs and he can’t go to school at all because he’s high risk. He’s at home learning virtually. Everything is different for us with our world, our ability to work, our ability to see one another, our friends, our families, and even going to church. Everything is different.
In those times, what I tell people is in our experience in life, we’ve had many times where things have been shifted. Things have completely taken out from underneath our feet. Jobs, families and lives have changed. When that happens, the important thing is to keep at the center of your mindset that this is where we are now, but it’s not going to be like this forever. What’s going to happen in the future is going to be a little different than what we had ever thought it was going to be. It’s going to look different than what we thought it was going to look like, but that’s okay. Not everything in life is pre-planned out. We tend to put in our perspective of what we think was supposed to happen and how things should have rolled out. We get upset and sad when that preconceived notion of what the world was going to be like or what was going to happen doesn’t then happen.
Homecoming didn’t happen for my senior, but some kids got together and had their own little FOCO or Fake Homecomings, where they are all groups of kids that were at their houses. There are ways that we can work with what’s been given to us. The biggest thing that I’ve said to friends that have been like, “I don’t know what to do. This is hard. My kids are struggling not going to school. I’m struggling to try to work and keep track of everything.” The biggest thing that I’ve said to them is you’ve got to get that whole what it should be and what I thought it was going to be. You’ve got to put that to the side because it’s not that right now. The more that you hold on to that, the longer it’s going to take for you to get through this. You’ve got to put that to the side and say, “That didn’t happen.”
What now can happen? I can’t send my kids to school every day. We don’t have that here in where I’m at but, what can I do? My kids don’t have the opportunity to have lunch with their friends every day. What we can do on nice days is have lunch outside in front of my house with the kids in the neighborhood that go to high school. They can go to one of the restaurants close by and grab a quick sandwich together. There are still ways for them to get together socially. We just have to be creative and think about ways that we can still do that.
I love what you said there about what it should be is this idea that we get in so much trouble, and letting it go and embracing reality. There’s a quote by Bill Burnett who said something like, “We fight with reality, but we can never change it.” We have to accept, let go and allow it because we will never win that fight with reality. It’s an important reminder that we have to give ourselves a lot. For you, as someone that has seen or as someone that is living with hope and filled with hope, what is it for you a day when you don’t have as much hope? What is that process like for you? What are the reminders or truth you preach yourself?
When I was a kid, we lived in the country. I had horses. We were continuously out in the farm. When you’re out doing things like that, you’re going to get hurt, cut and injured. The first thing my mom would say when we get a cut on our hand or our finger is to stop and let it bleed out because that’s going to clean the wound and get out some of the pathogens that are in the wound. We’re then going to clean it up, bandage it, take care of it, put some Neosporin on it as we go through, and make sure that it heals. That’s a good metaphor for life.
The first reaction that I have is to let yourself be sad and feel that. We spend much time making ourselves try to deny that we are feeling bad because we’re ashamed and embarrassed that we feel sad, hurt, upset, lonely or whatever our negative feelings are. We try to make ourselves not feel those because we assume that since they’re bad, we shouldn’t have them and that’s not true. They’re a part of you and you have to own that as well. You have to embrace those hard times and those negative feelings and say, “I have these. Let me hold those for a minute. Let me feel that for a minute. Let me cry for a little bit. Let me be sad for a few days. Let me go through that.” That’s okay. It’s normal. We should stop telling ourselves that it’s not normal.
After you get through that bleeding part, where you’ve let it clear up, then you’ve got to start bandaging it up. You’ve got to start taking care of it and nurturing yourself to try to get yourself back on track. If you get stuck in the part where you’re just in the negative emotions, that’s not healthy. It’s healthy to feel negative, but it is not healthy to get stuck there. Sometimes we need professional help to get out of those negative emotions. That’s okay. There’s no shame in that either.
There is a lot of this faux pas or these cultural things that are blacklisted or feel like they are not good things, but getting outside help is such a great tool. It shouldn’t be something that is socially not accepted. We’ve come a long way and those things are more readily available and prescribed for good reason. What you’re saying is beautiful in the sense that its acceptance, but not a final resting place. It’s moving through it and not staying and remaining in it too long. That’s a dance and a balance. It’s not a perfect formula. It’s a dance more times than not. Where in the country did you grow up?
I grew up in Western Kansas in a little bitty town called Oakley, Kansas with about 1,200 people. It’s about halfway between Kansas City and Denver, Colorado. We then moved to Hays, Kansas, which was a lot bigger than Oakley, Kansas because they had a stoplight. That was unbelievable. I then moved to Kansas City after that.
You’ve been increasingly growing in size every step of the way. At what age did you move from Oakley to Hays?
I would have been fifteen when we moved to Hays, and then I moved to Kansas City when I was 30.
That’s interesting increments there about growing up in Oakley, Kansas in the country. What was that childhood experience like for you?
Growing up in a small town is something pretty spectacular. You know everybody in the whole town and everybody in the whole town knows you. Everybody is your parents. You have a life 360 where anybody could track us. If we were someplace where we should not be, the phone was ringing at my mom’s house. She knew about it before I got home. It was a good community where everybody took care of everybody. You felt safe and comfortable. It was a good place to live up.
It’s something I’ve been thinking about a lot more. I’m curious to hear your thoughts. Now that you’re on the other end, which is a much bigger place. This danger that comes in size and scope, we lose some of that relational accountability and connectedness to the people around us. What have you seen in the trade-offs between living and growing up in a place like Oakley and now having your kids grow up in a place like Kansas City?
It’s interesting that we tend to create our smaller communities within a larger community. I feel like we have a smaller community here that is like a little town. My friends are not seeing my kids every place that they go. I do have 360 so that I know where they are, but it’s still the same. I believe people have this drive to feel that connectedness together. You create your own little communities of people, and the interesting thing is in a larger town, those communities of people can shift out and ebb and flow a little bit more than they did in a small town because there was a small number of people to draw from there. There are a lot of people that come into my life that I meet, and then I can continue to develop relationships with those people. Those opportunities were not as numerous in a small town because there weren’t as many people. It’s cool that I get to have that diversity in a larger community.
I grew up in a 45,000-person town, Hutchinson, Kansas. It was not quite the size of Oakley, but it’s a similar experience, especially as Hays for sure. It is such a beauty and a blessing to have those differences and experiences. They expand our perspective for sure. As you think about the ability to embrace change or differences than what we expected, do you think that living and experiencing different cultures, even within one state has benefited you in that? For people that maybe haven’t or grown up in Oakley, in Hutchinson or wherever, how do you encourage people that have a different experience than you in that to maybe embrace change as you have?
A lot of it goes back to who you are in having that feeling of curiosity and wanting to grow and continue to learn things in life. In this day and age, we have many opportunities to be able to do that because we’ve got the internet and all things that we can do virtually through the world where we can still learn. When I was growing up, we had two television channels, and one of them mostly snow and the rabbits’ ears out in the country. That was not broad. The Encyclopedia Britannica at the high school was pretty much resources that we had. We have this immense ability in this world to connect and to learn more information on a broader level. We get things more in real-time than what we used to. That’s the advantage of what we have now is we have the ability to do that. It’s upon us to be able to say, “I want to learn. I want to continue to grow no matter what age you are, and to seek those opportunities out and continue to learn.”
That speaks the power of choice in it. That’s powerful. Your mom had played a role in teaching you many lessons, as well as your dad. I’m curious, what other lessons or experiences or things they taught you that has stuck with you in the years since. What did your parents do for a living?
My dad was a county extension agent. He did a lot of driving around checking crops and talking to farmers. Anytime harvest season was around, we didn’t see my dad for a long time. He would go out and help with harvest crews. My mom was a stay-at-home mom. There were times that she would work. She worked for a savings and loan institution for a while. She worked for a dental office as a hygienist for a while, but she was at home the majority of my childhood. It was fun to have my mom around a little bit. She’s the one that I used to show horses and she’s the one that carded me around for showing things.
When you think about what they instilled in you as a person, what would you say was the biggest mark or piece of advice or wisdom that has stuck with you?
One of the main things that my mom brought to my life is that she was fiery and strong-willed. My mom is Irish. Back in the ‘70s and ‘80s growing up, it wasn’t easy for women to be that bold. My mom was a bold person. That was probably the biggest thing that I got from my mom. It was the understanding that just because I’m a woman, it doesn’t mean that I can’t do big things. It doesn’t mean I can’t go to college. I was the first female in my family for generations that had gone to college. Doing things like that, having dreams, and making that happen was a big deal. My mom and dad were different in their personalities. My dad was quiet, patient, kind and calm than my mom. When I was growing up, dad probably taught me more of the patience, sit back, be quiet and listen a little bit more. They were complementary skills to have from two completely different perspectives.
When you were a kid, what was the dream for you as a kid? What did you want to be when you grew up?It's healthy to feel the negative. It's just not healthy to get stuck there. Click To Tweet
I knew from the time that I was teeny tiny that I wanted to be a teacher. I played school non-stop at home. I had my stuffed animals and the dolls lined up. We had school every day. I knew that’s what I wanted to do. I went into education and became a teacher.
What was it about teaching that got you going that filled you with energy and passion?
There was such admiration for my teachers that I had as a kid and that made a big impact on my life. I thought that’s a cool thing to do, to be able to take someone and give them some knowledge and give us some skills so that they could achieve great things. I thought, “How fun would that be to be able to give somebody a start and help them to achieve what they want to do in life?” That’s why I wanted to be a teacher. Right after high school, I went straight to college and started my degree in education, and became a teacher. I taught kindergarten and first grade, and then I moved up and taught fourth grade and then decided to get my administrative degree and became an elementary school principal. After several years of doing that, I became a Director of HR in a school district here in Kansas City. That was my professional career as far as education goes.
When you look back on those years, how did being a teacher and even going through the different levels of education at a younger age there grow you as a person? How did your view of education change throughout that?
There’s never a day that you can be with a group of elementary kids and not learn something about life. Kindergarteners will teach you everything you ever needed to know. I’ve often said that being a director of HR in a district with 2,500 employees was like teaching kindergarten. It was the same thing, the same rules applied, just bigger people. Kindergarteners will teach you many amazing things. Two of the things that I’ve learned from my kids is number one, your potential is limitless. You just have to keep pushing that boundary of where it is that you want to go and what it is that you want to do. I had kinder kids that could add, subtract, multiply and divide fractions.
I had kids that could in their heads convert mixed and improper fractions at the age of five. It’s limitless. It’s where you decide. If I had said, “The only thing you’re going to do is count to ten,” that’s all they would have done in kindergarten. Some kids were way far beyond that because they just got that stuff. On the flip side, the kids that didn’t get it, here’s what helps them to get it. You have to sometimes love somebody through it. If you’re willing to invest the time, energy and effort to work with that one person on where they are instead of where you think they should be on, take the strengths that they have, and use those strengths to build their skills, their potential is limitless too. Those kiddos that couldn’t figure out the alphabet and couldn’t figure out how to put sounds together to make words, those for me were inspiring to teach because they tried hard to do something that was hard. Overall, they taught me that you have to be willing to work, and if you’re willing to work, you can do whatever you want to do.
I love how you broke that down because it’s this idea that we were trying to return to the simplicity of our youth, that things that are true for us as children are what’s true for us as adults. We get complicated and confused with the complexity that life brings. When you return to that simplicity of childlike wonder, awe, curiosity, innocence and the beauty of that, it is a lot of our journey as adults. Your role is the same thing regardless of the age. That is a beautiful breakdown. If you look at the education system and your involvement in it, what do you see as the needs of education? It’s the most unique time in education that we had seen in a while. I’m curious to hear from your experiences what you see as some of the needs or changes that could be helpful.
The interesting thing to me as an educator is in education, we always go through these waves of new things. We have to always try and do things, “This is a better way to do the math.” I look at my son’s math stuff and I have no idea why you don’t carry the one. If you carry the one, I could do your math with you. He’s way beyond that at this point. However, it is such a weird way to do the math to me. What education all boils down to is this and it will never change, and this is everything in life. You have to figure out what your goal is and what you want to learn. You have to figure out what your strengths are. What are you good at within what you want to learn? What are your weaknesses that we need to work on so that we can help you get to that goal? What are the tools that we’re going to use to help you use your strengths to overcome your weaknesses to reach your goal? It’s that simple.
It’s simply a matter for educators of sitting down and deciding what it is for that individual kid. You can’t group kids into this big conglomerate of, “You’re all in AP Euro. You’re all going to be doing this one thing.” You have to look at that kid and you have to say, “Susie is having a hard time understanding this concept. Let’s figure out why and then let’s use her strengths to overcome her weaknesses to get her where she needs to be.” It’s that way in life outside of school too. It’s that way with everything that we do. As individuals, we need to be able to do that within our own selves. To be able to sit back, reflect every day and say, “What were the things that I did well? Where did I miss the mark? How am I going to use that to get to where I need to be tomorrow?” When you do that, you can do big things. When you don’t sit back and reflect on that and try and figure out how you’re going to get from A to Z, that you have a problem.
We have to stop in order to move forward. It’s counter-intuitive in that. What a great lesson and framework for the education of reiterating what’s your goal, what do you want to learn, what are your strengths and weaknesses, and how can you use your strengths to overcome the weaknesses? What are the tools to use to get there as fast and efficiently as possible? That simplified framework is helpful. It clarifies the role for teachers who are getting lost in the weeds sometimes because there’s much going on. As a teacher, I’m sure that they’re being barraged with a million things from a million angles. That clarity can be helpful. When you talk about reflecting every day, what does that practice look like for you? When did that first begin?
It began when I was out of college as a teacher. I had some good mentors when I started in education that instilled that reflective practice in me. At the end of the day, I jot down what went well, what didn’t go well, what am I supposed to do tomorrow and how am I going to get there? I even tried to do that throughout the day. I work at a nonprofit. After I’ll do a call with somebody, I’ll say to myself, “Here’s where you did a good job. Here’s where you didn’t do a good job. This is what you need to never ever do again. This is what you should do again.” You have to learn from all of your experiences and try to improve that. That’s always been something that my mentors always instilled in me. Hopefully, that is something that as an educator I instill in my students as they continue to move through life too.
It’s attainable. One of the things that is great about reflection or journaling is that it’s just a pen and a paper and a few minutes. That allows us growth and progress. I remember when I was playing golf, a huge part of my personal growth process is sitting down and writing down what did I learn, what went well, what didn’t go well and how can I get better? It is a great simplified framework there. Speaking of educating, one of the things that you educate primarily is with your family. As you were approaching being a mom, what were your hopes and dreams, and what were your expectations of motherhood? What was that experience like for you?
Everybody envisions this model of parenthood where everything is going to be great. It’s all going to go smoothly and well. You’re going to raise the most amazing human being who will never make any mistakes ever. You will never make any mistakes as a parent ever. That would never happen. You have that ideal vision in your head and that goes out quickly. That’s not going to happen. The nice thing is for me, the most important thing has always been, I just need you to be a good human. I don’t care if you go to college, you go to Ivy League, you go to a community college or trade school. I don’t care what you do. I just want you to be a good human. I want you to be happy and I want you to contribute to the world in some positive way.
Sometimes as a parent, you get wound up especially in school districts like the one that we’re in. It’s pretty much the expectation you’re going to college and that you’re going to do your four-year degree. You then are going to do some professional career. Not all kids are wired that way. That’s not success for all kids. There are going to be entrepreneurs that are going to go out in their first two years after high school and they’re going to make millions of dollars because they’re brilliant. They didn’t even need to go to college. They’re going to be kids that are going to become plumbers. We need plumbers. There’s a whole gamut of what’s defined as success. It boils back down to, “I want you to grow up to be a good human. I want you to contribute positively to the world. I want you to be happy. I want you to grow every day and continue to look back.”
There are a lot of frameworks that we can use from this. It’s practical wisdom that has come from a life of experience. You have two sons and had a daughter as well. What were some of the earliest trials like for you? With that, maybe paint a picture of your family now and we’re going to talk about how we’ve gotten to where we are now.
Parenthood did not come easy for my husband and me. We got married when we were 35. We wanted to have children fairly quickly and I didn’t get pregnant right away. It was a challenge to even get pregnant. When we did get pregnant, it was exciting. We were happy. About seventeen weeks into my pregnancy, my water broke. I was in the hospital. I did bed rest for about two months. When the water broke, they told me, “Don’t move and lay down.” I spent about a month and a half in the hospital on bed rest hoping that we could get to a time period where when our daughter was born, she would be old enough that they could do some more medical interventions. That didn’t happen.
She was born early at 24 weeks. She weighed 1 pound and 9 ounces. Her lungs were too underdeveloped to survive. There wasn’t enough that they could do to help her at that point. We had Miranda for about fifteen hours and it was the most beautiful and awful fifteen hours of my life. We spent our time saying hello and goodbye to her. I always looked back at that and I think how blessed and lucky were we that we got to say hello and goodbye. I’ve also had two miscarriages. Those were babies that I didn’t even get to say hello and goodbye to. We got that opportunity with Miranda. While it was hard and it was not something that was without pain, there was some beauty with it. There was a lot to be grateful for in I will always be Miranda’s mom. She will always be my firstborn. She will always be my daughter. She will always be our family. We will always talk about her.
That’s how our parenthood started. After Miranda died, I didn’t want to have another baby. I was like, “I can’t do that again. That’s too hard. It’s too much.” We got pregnant and that’s when I had my first miscarriage. I’m like, “Seriously, I told you I’m out. I can’t do this again.” We then went ahead and tried again. That’s when we had our first son, Zach. He was healthy and awesome. He’s the one that’s a senior now and graduating. After Zach, we had another miscarriage, and then we had our son Braden. He is a sophomore in high school now. He is our little guy that has autism, which was another wrench. These are all things that you don’t expect to happen. I figured that after one bad thing happened, the rest would be okay. That did not happen. Things were like a rollercoaster for us along the journey.
Thank you for sharing. Going back to that early period, these experiences are way more common than we ever expect. We don’t know until we’re often in them. What was that like for you when you aren’t able to get pregnant? That is common that we don’t hear about it. The same with miscarriages, there’s way more commonality in that than we would ever expect. Usually, we don’t find out until we go through it. How was that going through it? Did you feel like you were able to talk about it? Did you feel supported in that? What were those experiences like for you? As a mom or anyone, that’s crushing. I’m curious how you and your husband got through that.
Even now, it is something that is not that talked about. People don’t talk as much about infertility. They don’t talk about as much about miscarriages. I don’t know why we don’t do that other than there must be something in ourselves that says, “It’s hurtful. I’m ashamed that it happened because I feel some onus.” As a mom, it’s my body. I feel some onus that I couldn’t carry those two babies that I miscarried. There’s that guilt with it. Maybe it’s those negative feelings that keep us from talking about it. There are support groups out there. I did not use any of those support groups. I have some amazing friends and my friends were my cornerstone of strength for all of that. They were there for me and were my shoulders. They helped me get through all of that.
The nice thing is that a couple of my friends are psychologists, so it was good advice that they had for me. It was a hard, lonely and isolated time. There is some degree of you don’t talk about that stuff. You’ve got to find a group of people that you can talk with and you can share your feelings with who will empathize with you, but also hold you accountable for coming back out of that sorrow and not let you stay in that sorrowful place. If you need help, they’ll help you get the help.
You are hitting the nail on the head about that shame and guilt we feel often keep us from talking about a myriad of things. I can see that being a big part of that as well. As you shared, there are many hardships that you and your husband and your family faced in this journey. There comes a point where you’re thinking, “This is the end.” I’m curious at what point was that low for you? At what point was it that you were like, “I can’t get beneath this rock bottom place?”
When Braden was about eight months old, he was playing with the shape toy. It was one of those where you put the square in the square and the circle in the circle. I noticed as he was doing that, he was competitively putting the shape back in and watching to see it land into the toy. He was perseverated on that repetitive action. Immediately my education background went, “That’s not a normal thing.” I became concerned. I called in a couple of my friends who work with autism and had them come over and do some watching to see. They were like, it’s early to diagnose if a child has autism in eight months. Braden was also a very social kid, but it’s entirely possible.There's still a lot of life out there to live. Click To Tweet
We started interventions with Braden as if he had autism. We wouldn’t get him diagnosed with autism until he was eight because we had a few other bumps that came along the road in the meantime. The autism was something that I was like, “That’s not how I envisioned life happening. I envisioned him moving out, living on his own, having a family and children.” That was another time that I had to say, “Let go of that preconceived notion of what life is like. Let’s embrace what this new thing is and let’s find a beauty in that.” We got through that.
When he was three, he was diagnosed with cancer. The type of cancer that he has is called neuroblastoma. It is a lethal kind of childhood cancer. He was given a 30% chance for five-year survival. That was a hard thing to hear with this little guy that had started life and already had some challenges ahead of him. We started cancer treatments. We were in the hospital for a year and a half doing treatments. We lived there at the time Zach, who was the older of our sons, was four. He was at home and doing preschool with Brian. I’m down at the hospital with Braden and we’re living two separate lives. We’re like, “This is hard. This is going to be the end of it. This is the toughest thing, but we’ll go through this. We’ll come out of this and we’ll be fine.” We got through that and he was okay. We were like, “He’s okay.” We went back in for scans and his cancer had come back. Relapsed neuroblastoma comes with no known cure. His odds fell to less than 10%, which were the odds that our daughter Miranda had. At that point, I was like, “How does it get any deeper and darker than I’m going to have two children that I’m going to disgrace for?” That’s the reality that we’re looking at.
We didn’t give up hope and we continued to find some crazy things. We tried some ridiculous trials like Phase-1 kinds of studies. In Phase-1, the only thing that you’re doing is seeing if the drug itself is going to kill you. That’s what a Phase-1 is designed to do. We did it because there was nothing else. We did compassionate care access trials, which if we don’t do this, we’ve got nothing and he will die. We started those things. Along that journey, about three months after he was diagnosed with his cancer, I got diagnosed with breast cancer. That was the moment that I was like, “This is too much.”
I have a strong faith and I fell down on my knees with my hands up and said, “Lord, I can’t get through this. I need for you to carry me through this.” I leaned hard on my faith and on God’s love knowing that it is hard. I’ve got to give some of that to God and I’ve got to let him carry it. I have to let him help me see the blessings along the way because if Braden’s life was going to be short, I needed every minute of that life to be good, happy, awesome and wonderful. I didn’t want him to not have experiences in life and I didn’t want him to miss out on things. While we’re both going through chemo, when I’m feeling like I’d like to have a nap, he wanted to go to the park. I don’t know if the next day he’s going to feel like going to the park. I got up off the couch and we went to the park or the Pumpkin Patch or wherever it was that we went and we did things.
At that time, he was five. This little five-year-old boy taught me more about life and more about how to handle hard things that any human being ever will teach me. With the autism, he didn’t know that he had cancer. He didn’t know he was supposed to die. He didn’t know that they were throwing things in his body that nobody had ever tried and then he was going to feel bad. All he knew was, “I don’t feel good. Probably everybody feels like this so let’s go to the park.” That’s what we did. His lens and his perspective of life are what led me through, “God, I’ve got to give you this part and I’ve got to focus on this part.” His autism turned out to be a tremendous lesson and a tremendous blessing for us. It taught us that we have many preconceived things in our heads about how we should feel and how we should react and how we should do life. If we let that go and focus on what we still can do, there’s a lot that we still can do even if we don’t feel that great. Even if we’re sad and feel like all hope is lost, there’s still a lot of stuff that you still can do. There’s still a lot of life out there to live.
It is incredibly humbling to hear what you guys have gone through. It’s remarkable. I can’t imagine a much lower place to be in what you shared. In that process, in those moments where you’re at your wit’s end, and you’re at this place where you’re having to care for yourself when all you want to do is care for your son, what do you learn about the meaning of life and our role in it in those moments? We all get wrapped up in what we think life is about, what is going on, and what we feel like our responsibilities or duties are that we miss what it’s about. I’m curious to hear in that moment what that was for you.
We do and that’s exactly what happens. Something happened that set my mind on that track early on. We were downtown for treatment for one of his rounds of chemo. He was in the hospital and his last chemotherapy finished at 10:00 at night. They were like, “You can spend the night or you can go home. We got a few days at home. We’d get maybe 3, 4 or 5 days a month at home that I was like, “We’re going home. We’re out of here.” He was at that point on feeds through an NG tube. I hooked him up the feeds on the clip where you hang the laundry. I got him in his car seat and I’m getting ready to drive home. The road that we take to get from the hospital to our house was closed. There was a detour and we had to go around.
I’m upset because I want to get home. I know that those feeds are going to run out and it’s going to start beeping at me. I’m going to be stuck on the highway with these feeds beeping at me. If I don’t get it cleared out, it’s going to get clogged. I then have this NG tube that’s clogged that I got to figure out how to get unclogged. I was like, “This cannot happen at any worst time. It was not going to be good.” I’m taking the detour. I’m in a bad mood, I am mad, I’m angry at the road, I’m mad at the people who created the roads and all of the cars which there were not many.
We got down through this detour and it took us past this place in Kansas City called Crown Center, which is always at the holidays. It was completely lit up with lights. There are the coolest water fountain features down there. It took us down through the center of that and all I’m thinking is, “I don’t know how to get home from here. I don’t know how to get back to the road from where I am here.” I hear Braden in the back of the car, “Mommy, the lights and the water.” He’s bouncing in his car seat, clapping his hands and screaming because he’s happy to see all of this. I took this breath and I stopped. I looked and there was nobody around. I pulled a U-turn in the middle of the road and went back past it so he could see it again. He’s even happier this time.
I did 5 or 6 U-turns so that he could see all of this beautiful stuff and we drive slowly past everything. I noticed out of the corner of my eye, something was moving and I looked over and there’s a bus stop right over the corner. I happened to catch the eyes of some of the people at the bus stop. I’m bawling, crying, clapping and laughing because he is in the back, but they can’t see him. All they see is this crazy woman spinning circles, clapping and crying. What that taught me is life is going to take you on some detours. It’s going to take you on unplanned detours that you’re not going to be happy about. What you can do is you can find the beauty in those things. You can find happiness in those things.
You have to stop and you have to make yourself take a breath. You have to embrace it. You have to go with the detour. When you go with the detour, there’s much beauty, happiness and joy. Sometimes going against the flow is the way to go. Sometimes go with the flow and let it take you. When we would be out driving places and he would see a park that we’d never been to before, we’d pull over and stop at the park. It’s not planned but we do it. To this day, if we go through a crossing where there’s a train that’s coming by and we beat the train, we turn around and go back so he can see the train because he loves trains. It’s about the detours in life. It’s about embracing those detours and being willing to sometimes let life take you down a little bit different path, but see the beauty in the path.
That’s a message that everyone to some extent can relate to in all of life especially in 2020, as we’ve all had a lot of detours going on. That’s a beautiful story. As you’ve been sharing, I feel like people that grow up and experience autism often are the ones that are living the truest lives. I remember a girl in my high school named Kylie who was known by everyone in the school. This was a big high school with 1,600 kids. Every person knew Kylie and she never met a stranger. She wasn’t afraid to talk to anyone. Yet, she still had the nerves of talking to the cute boys or all the things that are known, but there wasn’t this cultural, sociability, acceptability norm in place. It was freedom of full expression and feeling in those moments. We miss it with this cultural appropriation that we start assimilating into. We miss the simple joys of being authentically ourselves. Have you seen that with Braden? What is your experience with raising a child that has autism been like?
That’s exactly what it’s like. They don’t have the same limits and fears that we do because if we do that, some are going to look at us and be like, “You are weird.” That is not the way we do things. That is not the social norm for how we do things. One of the beautiful things about people that have autism, and there are many people and many kinds of things, but it is to remove that social norm and to be willing to step out of that social norm to show happiness. Honestly, that’s one of the things that Braden has taught me in life. It is to show you are happy. It’s okay if you look weird, just show happy because people react to happiness. People love happiness.
It takes down that wall for the people that you’re with. They don’t feel like they have to keep their serious wall up of, “I can’t do that because that would not be socially okay.” Especially high school kids do this. Everything in high school is embarrassing. To be able to have somebody that can show you that true emotion and not be apologetic about it is a refreshing, cool, awesome, wonderful thing to have in life. People respond to that because they’re like, “I wish I could be more like that. I wish I could be more unapologetically me.”
The answer that we all need to hear is you can, but it’s hard to live that way, to return to that childlike wonder and living as your true self. In some of the call I did, you were described as a force to be reckoned with in terms of pediatric care funding and awareness. I’m curious if you ever imagined that being a descriptor of yourself and maybe giving people the story of how that came to be.
I would go back to my mom on that. Remember when I described her as an Irish woman who was stubborn and fiery. I’m a good human. I would like to be nice to people, but there have been things along our path in our journey with treatments where numerous times doctors and even pharmaceutical industries have said to me, “No, that can’t happen.” I’ve pushed back and said, “Why can that not happen?” “Here are the reasons why I think why not.” It’s because of that, they listened. They were like, “That’s a good case that you put together there. Let’s give that a shot.” All those times that we tried all of this crazy stuff for Braden, we were out there on a limb.
After Braden and I went through our cancer at the same time, we went through about two years of nice quiet. He was diagnosed with a secondary form of leukemia. We sat in this meeting with our oncologist and she said, “Nobody has ever survived the secondary form of leukemia after neuroblastoma.” Here’s why. The treatments that he’d had been toxic that they deleted one of the chromosomes in his DNA. They took a chromosome out. I don’t even know how that happens, but it deleted one of the chromosomes in his DNA. The problem with Braden having relapsed neuroblastoma and then having this deletion of this chromosome is that if there is even one neuroblastoma cell in his body when we go to fix this chromosome deletion thing, we have to knock out his whole immune system. By knocking out his immune system, we then allow the neuroblastoma to come back.
When you knock out his immune system, we can give him new DNA. We can give him donor DNA. It’s called a bone marrow transplant. When you do that, you have to have your immune system knocked out or your immune system would reject those cells. Our choice was this. We can do nothing and in about six weeks, Braden health then dies because the secondary leukemia kills him, or we can try to do a bone marrow transplant, knock out his immune system, and then the neuroblastoma comes back and then the neuroblastoma kills him. The question that they had was, which way do you prefer for him to die, neuroblastoma or secondary leukemia?
He was not done fighting. We said, “We want to try the path of hope.” We tried again some crazy things to try to knock down his leukemia cells to zero. They told us at a time, “You’re not going to get there, but if you get there, the chances that this bone marrow transplant would work is none.” Nobody’s ever survived. It’s never been done before. We got lucky and his leukemia cells went down to zero. We found a perfect match for his bone marrow. The perfect match was his brother Zach who was ten at the time. Zach donated his bone marrow, which is a big deal because he is donating bone marrow to save his brother’s life knowing that it’s not probably going to work. He’s not probably going to live, but he did it. I’m proud of my son for that.
We did the bone marrow transplant and Braden is several years out of transplant and doing well. He is past that five-year survivorship mark. He’s the one who has made it so far. You have to be a person who looks at a no as a maybe, instead of no as a stop. The no had to redirect me into figuring out what other things we could do. We’ve turned that into a childhood cancer organization where we fund research for targeted treatments of childhood cancers. We funded about $4.1 million in cancer funding so far to help all children so that when they hear that they have cancer, their treatment option isn’t, “You have no known here. There’s nothing that we have for you.” We’ve been able to help open some doors for some kids and create a difference. I will tell you that you can’t do that as a silo of one. You could be a silo of one that says, “I want to make a difference, but I don’t know what I’m doing.” You then have to have this huge network of beautiful, amazing people that join in and say, “We agree. That’s not okay. Kids should have a chance to live.”
I did not know how overlooked and undefended childhood cancers were. I thought cancer funding was just cancer funding. I didn’t know that all childhood cancers combined got less than 4% of the National Institute of the House budget for research. Breast cancer alone got 12%, but all childhood cancers combined got less than 4%. I’m grateful for the breast cancer funding because it benefited me, but we got to do better for our kids. We have this amazing community here that is helping to make a difference for these kids because people care. People are good. People want to make a difference. People want to be able to bring hope to these kids. I will say that the stubborn part started it, but then I got joined by this whole army of incredibly stubborn people who also said, “We are not going to let this just be status quo.”
That is powerful. Try the path of hope, what a great word and story. I’m inspired by hearing it. Like anything, from the outside looking in, there are a lot of foundations out there. There are a lot of people running nonprofits. I’m like, “Lots of people do it. It can’t be that hard. It can’t be that tough of a thing to do,” but then we dive in and it’s like, “How does this even happen? How is it even possible?” Especially when you come up against this space where it’s drastically underfunded like childhood cancer. Deciding to do something about it and doing something about it takes immense work and effort. As you’ve gone down this path of founding Braden’s Hope and working on raising over $4 million, which is amazing. I’m sure this journey parallels to what we’ve heard so far. There are a lot of moments where it seems like, “I’m not going to be able to do this.” Can you share a few of those moments in the journey of the foundation where it was beyond your pay grade like, “I had no idea how to do this and I don’t think there’s a path forward?” What was that process like of starting a foundation?
That was day zero for me. I’m an educator. I don’t know anything about starting a nonprofit. I said to my friends, “I don’t know how to do this. I have no idea how to do this.” That’s when all of my friends said, “We don’t either, but we’ll help you find the answers.” People started making connections with people and helping us figure out how to do it. I have a neighbor who’s an attorney. I called her and said, “I looked at this 501(c)(3) application paperwork. I have no idea what they’re saying. Can you help us?” She was able to help us get connected to people that can help us with the 501(c)(3) paperwork. It’s been like that all along.Life is going to take you on some detours that you're not going to be very happy about. What you can do is find the beauty and happiness in those things. Click To Tweet
Because I have such a strong faith, I feel like this is an example of how the church works. The church isn’t four walls that you go to every week. The church is the world and the people in the world that reach out to make a difference and help and propel us forward. This for me has been the living, breathing church. This has been the arms wrapped around us with people saying, “It’s okay, that you don’t know. It’s okay that you mess that up. We know how to help you fix it. We know how to help you make it better. Let us help you.” I feel God’s love wrapped around us in the work that we’re doing because there’s been this tremendous outpour of the community from everybody wrapped around it.
I was thinking of this early when you’re talking about it because in America, especially in the Western World or in the modern-day, there’s this idea of bootstrapping myth. The whole goal is to pull yourself up by your own bootstraps and become a self-made success or whatever the buzz words are. What your story and what it’s highlighting is a reality that it always relies on the gifts of other people. Was that a challenge for you personally? Was it already past that point when it came to the foundation? I don’t know if that’s necessarily natural for us.
I love the bootstrap analogy. That’s a good analogy because we do. That’s on us because we expect ourselves to be able to do it, “I should be able to pull myself up. I should be able to do this. If I don’t know how to do that, then either I have to learn or have to say that’s not something that I can do.” As an educator and it all goes back to the education background, my whole life has been, “If you don’t know what you’re doing, raise your hand and I will come to help you.” That’s all you have to do. Sometimes kids aren’t willing to raise their hands. Sometimes you have to look at kids’ faces and figure out, “You are stuck with that. Let me come and help you.”
There are two ways to do that. I’m a person who does not have a problem raising my hand and say, “I’ve got nothing. I don’t know how to do this.” That for me has never been a problem. Some people have a hard time raising their hand. Even if I hadn’t been that person, I already had this amazing community of people that could see my face and were willing to come in and say, “Clearly, you’re a little lost, aren’t you? Let me help you figure out what it is that you have to figure out.” Truly, it has been a humbling experience to get to see the amount of compassion and caring that people have and the willingness that they have to pour in to try to help.
“Raise your hand,” I love that analogy. I need to hear this as much. Often, I need to raise my hand and I don’t. I definitely can grow a lot in that. It’s $4.1 million already raised and it’s only been nine years.
We have been in about nine years. We’re getting ready to start our tenth year. We did not fund anything new in 2020, but we’re looking at doing twice the funding in 2021. We’re doing $1 million level grants this 2020.
No one saw that hiccup coming. As you sit here now, what are you most proud of thus far and what are your hopes for the future?
What I’m most proud of so far is having had the opportunity to live this life where I’ve been able to draw on many other people to help grow, learn, do things and become better. I’m grateful that I had a family that taught me the importance of doing for others before you do for yourself. I am grateful that I’ve had friends that have taught me, live and breathe that same lesson, people in their hearts that do for others before they do for themselves. What I’m most proud of is the community that I live in, my family and my friends are all people who show that selflessness and willing to give and help others and live for others. That’s the thing that I’m the proudest of, that I get to live that way.
As you look ahead for Braden’s Hope and what the foundation is going to continue doing, what do you see as the future hope for the foundation?
What will happen with Braden’s Hope is we’ll continue growing bigger and be able to help more with research and more in-depth, even bigger and broader research studies than what we’ll be able to fund so far. A million-dollar study is a big deal. That’s a large-size study, but what would it be like if we could do a $10 million study? What would that bring to kids with cancer? The sky is the limit for the impact that we can have. The goal is that hope is the answer and that’s what we want kids to have. There are still childhood cancers that when you’re diagnosed with them, it’s a terminal diagnosis. DIPG is a brain tumor type. When you’re diagnosed with DIPG, there’s nothing. They know that you’re going to die within six months to a year. A year is a long time for a kid with DIPG.
That’s not okay. There should always be something that we can do for treatments. That’s the way life should work. You should have treatments available for you. We don’t ever want families to hear, “No known cure.” That’s what we’re working for. We won’t see the end of cancer in my lifetime. I hope that in my lifetime or my children’s lifetime, we’re going to at least here, we might not have the exact right answer yet, but at least you’ve got some things that we can do and some things that we can try that are more targeted, that aren’t going to delete the chromosomes because they’re toxic.
When you’re going through in your daily life and all the things that are on your plate as a mother, as involved in this foundation, as a wife, what is it that motivates you? How do you stay driven? One of the things that a lot of the references mentioned is that they are curious to hear how you keep going, how you stay driven and motivated with many things on your plate. Having endured many things already, how do you keep that drive up?
The things that we’ve gone through are the fuel for the fire. I don’t want other people to go through that. I don’t want other people to have to go through the same things. My goal would be let’s prevent that from happening. Let’s keep people from having to go through that unknown, that pain and the anguish. For me, every day when I was a teacher, what kept me going were the faces of all of those little people that I got to see every day, walking down the hallway, and getting mobbed by this whole great big line of kids and getting tackled. That’s why I did what I did. That was what made every minute of every day worthwhile is that connection.
Though I don’t get to see our kids with cancer every day, especially right now in a COVID world, they are the faces that I have in my head and in my heart every day as I work. I reflect and pray for those kids every morning. Those faces and those stories motivate me to keep working because somebody’s got to do something. I remember in the hospital saying to myself over and over, “Somebody has got to do something. Why is somebody not making a difference for these kids? It then dawned on me that I am somebody.” That’s what keeps motivating me is I’m that somebody. It’s like in the Starfish Story where a boy on the beach is picking up the starfish and throwing them back in one at a time. Somebody comes by and says, “Why are you doing that?” He’s like, “They’re going to die if I don’t throw them back in.” The person says, “There are thousands of them out here. You can’t save them all.” The kid throws one back in and says, “I made a difference to that one.” That’s what keeps me going. It’s the hope that what we’re doing is going to make a difference to somebody along this way.
There are many people reading this and maybe for the first time are realizing that, “I am somebody. I can be that somebody.” That is a human experience that when we see a problem, “That should be different. There needs to be changed here. I want somebody to change this.” There’s that light bulb moment that, “I am somebody. I can play a part in being the change in that environment or situation.” Maybe this conversation your reading is that light bulb. How do you encourage someone that maybe that light bulb went off and they’ve been thinking about this area of change that they’ve seen in their life for a long time? They’ve wanted it for a long time and nothing has moved and nothing has happened, and now the light bulb goes off. What are the stepping stones or what is that next step that at that moment can be taken?
It goes back to what we talked about. You’ve got to set a goal. You’ve got to figure out, what it is that I want to do? I’m going to use my strengths. I’m going to address my weaknesses and how I’m going to create a plan to get there. You’ve got to raise your hand and ask for help. You have to have somebody help you along. We can’t get through life alone. If we did, it would be a horrible thing. You have to rely on other people. Even if you did try and get through life alone and you did okay, it wouldn’t be as rich and your answers wouldn’t be as good. You’ve got to raise your hand and ask for help. You shouldn’t raise your hand and get help from people who think like you and agree with you. You have got to find a diverse group of people who think differently than you think because if you never have anybody challenge your thinking and set you back and make you revise what it is that you’ve been working on, you’ve never challenged yourself far enough. If you’ve never gotten to know or if you’ve never gotten to, “That was wrong,” you’ve never challenged yourself far enough. That is a critical piece.
That’s huge. Diversity of thought is massive and we are naturally opposed to it, which is why it’s even more important because otherwise if we don’t choose it, we’re never going to have it. Deliece, this has been fun. It is an inspiring conversation and hope-filling. I already feel lit up with inspiration from this time we’ve shared. I can understand why that was the most common theme among everyone that knows you. We could talk forever but life does go on. I know you have a lot on your plate. We’re going to end with a few one-offs here. They can be as short or as long as you’d like. What question do you ask yourself the most?
The question that I asked myself the most is, what am I grateful for? Going back and deciding what you’re grateful for helps you have a positive mindset because you can be in a bad day, in a bad moment and in a bad situation. If you make yourself say, “What am I grateful for?” and boil it back down to that. I keep a gratitude journal every day. I write down what I’m grateful for. That’s the most powerful thing that I ask myself every day.
The next question is, if you could study one other person for an entire year, who would it be and why?
I would study the pastor at our church. I believe he is a good human being. His name is Adam Hamilton and he has a way of framing things and thinking about things in an inclusive way of embracing God’s love for everyone. I would love to spend any amount of time trying to get inside his head and his part.
What book or books have had the biggest impact on you?
This is an old one. The book Good to Great was a good book for me at the beginning of my professional careers in administrator because what it taught me is that you have to keep pushing forward and sometimes things don’t move as fast as you want to. You’ve got to get the right people in the right seats on the bus. It taught me a lot of good things that I was glad that I had another one that I liked. Early in my teaching career, it was The Power of Positive Thinking by Zig Ziglar. Having that mindset continuously helps to shape and frame everything that you do.The things that we've gone through are probably the fuel for the fire. Click To Tweet
The next one is what new habit or belief has most positively impacted you or your life?
That’s easy. Having hope is a mindset and a belief. The person that taught me was my little Braden who went through everything that he went through and every day had a smile. Every day, he could be feeling bad and sick, and still he would smile and tell me that he loved me. That was enough.
The final question that we ask every guest that comes on. If you could send a morning text reminder to every up and comer out there, what would you say and why? It can be a short message they get from you each and every morning.
I’ll stick with my theme. I would say two words, have hope.
Deliece, this has been awesome. Thank you for coming on and sharing your heart, your life, your experiences and a bit of your family and your story. It’s been powerful.
Thanks for inviting me. This was awesome.
If people want to connect with you, where is a good place to go or find out more about the work you’re doing?
If you go to the website, there’s a contact button on the website. You can go there or you can find me on Facebook too.
It’s been great. We are grateful for the work you’re doing. Until next time, thanks for coming on.
Thanks for having me.
We hope you have an up and coming week because we are out.
If you would like to get a curated list of all the content I’m learning from, whether that’d be books I’m reading, podcasts I’m listening to, quotes I’m pondering, or even some sermons I’m enjoying, In-Thane is a monthly newsletter that brings vetted content that I know you’ll enjoy. Go to ThaneMarcus.com/inthane to sign up and you’ll be sure to receive the next one. Each edition of In-Thane is released on the first Sunday of the month. This is a once a month newsletter that I hope you enjoy and benefit from as much as I have. Here’s to learning and growing one day at a time.
- Apple Podcasts – The Up And Comers Show
- Patreon – The Up And Comers Show
- Braden’s Hope For Childhood Cancer
- Deliece Hofen
- Good to Great
- The Power of Positive Thinking
- Facebook – Braden’s Hope for Childhood Cancer
About Deliece Hofen
President of Braden’s Hope For Childhood Cancer, Speaker, Leader, Former Educator/ Principal/Director of Human Resources, Lucky Mom, Runner, Cancer Survivor, Momcologist, and an extremely Determined, Hopeful, and Grateful Person.
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