05: Regina Ellis

Chris Suarez (00:00):

Welcome back to the experience growth podcast, where the collective mission of our community is to build experiential businesses and more importantly, big experiential lives. Now we do that ultimately by learning how leaders are learners and whether we're leading ourselves, leading our families, leading small businesses or leading massive companies.

Being on the forefront of leading a movement towards experiential living is our goal. I'm your host, Chris Suarez. And today we are going to learn from our guest Regina Ellis. Now, Regina, back in 1995, founded the children's cancer association that is now across the country. and really is a mission of prescribing joy.

Now that mission of joy, as you will shortly learn was grounded in a moment of tragedy. But since 1995, CCA has been transforming the pediatric health care experience through innovative joy based programs. Really with the goal of enhancing the mental and emotional wellbeing of pediatric patients with the healing power of music, the healing power of friendship.

The healing power of nature. Now I wanted to share Regina with our community because she has built not only an experiential life, but her mission is to really build experiential lives for children, for teenagers that are really going through a moment of stress, of pain of life, threatening illness.

And my perspective of her organization. And now this organization spreading throughout our country is a mission of building joy through these moments or these experiences that have the power to heal. So today we are going to see that building experiential lives need not be for decades and decades.

It could be just an experiential moment. And I'm grateful to Regina for sharing her story and sharing her perspective with our growing community.

I'd ask at the end of this, if it touched you, if it moved you, if it shifted your perspective, please share this with a friend. I'm grateful that Regina was so open and willing and giving of her time, but also open and willing. And giving us her story. So share this episode with a friend shared on social, consider leaving us a review on the platform of your choice and be part of the movement of building experiential lives.

Chris Suarez (02:55):

Alright , Regina. Welcome. Welcome to the experience growth podcast. where we talk constantly about building big businesses and big organizations and big companies. but most importantly, we talk about building big experiential lives and, there's probably no one we have had on as a guest before, that has built such a.

Regina Ellis (03:18):

Such 

Chris Suarez (03:19):

An arching, mission based organization in life than you. And I can say that because we know each other personally, and I'm actually really excited for our audience to get to meet you and get to know you, but probably more so for them to get into, get a glimpse of your perspective, what shaped your perspective, what continues to shape it.

And. And how you've been, one of the most committed humans to admission that I've ever, or that I've ever met over the last, I'll say decades, plural. And then I'm going to share some time, so maybe we can start at the beginning. and then we'll unpack it, which kind of how the beginning shaped the future for you.

You founded an organization, in 1995, is that right?

Regina Ellis (04:05):

Correct. Yeah. 

Chris Suarez (00:04:07):

The Children's Cancer Association. Tell us what the organization is and what it does. and then why? 

Regina Ellis (04:14):

First I just want to say, thank you for the honors to be, sitting here in the virtual, experiential living room.

And, I feel like I'm. It's been such a pleasure to have met you many years ago and have, been the recipient of your generosity of your friendship, of your family's involvement in the children's cancer association. and knowing more about your story and, I'm weekly inspired, in your social posts and how do you.

Let many of us into your challenges and opportunities to think about our lives in new ways and sharpen our leadership and human tools as we go out into the (00:05:00) world. So I'm a big fan. Yeah. And I'm also, I'm full of gratitude to have. Your friendship and leadership, around the corners of my life and the children's cancer association.

So thank you. I'm honored to be here. Yeah. 

Chris Suarez (05:16):

You saying that and I owe you a picture, a region actually, because you don't know this, but, when you talk about how it shapes and what you do, shapes others and generations, So just one week ago, at our farm, actually, we had someone come out to the farm because for the last gosh, 1314 months.

my daughter, Lorna, who you've met, has been growing her hair and with not letting it touch it. And, and she, just had a cut so she could donate it. And, and obviously that's through, through another organization that does that. And, but she wouldn't do that and care about that and live this year long episode of just taking care of her hair.

and talk about how she's just so excited to have a child that needs it, have it without you and CCA, and to start that ball. So it's interesting that how experiential living impacts generations, and 

Regina Ellis (06:15):

Is

Chris Suarez (06:16):

Was part of it. My purpose in getting involved with CCA as well. So tell us a little bit about it.

Regina Ellis: (06:21):

That's beautiful. I'm the founder and chief joy officer of the children's cancer association. And, as the inspiration to create an organization that would give, get and share joy in, pediatric healthcare. Really was born out of a very personal experience of my oldest daughter, Alexander Dre I'm facing cancer when she was very little at three, and battling cancer it's or with everything she has had.

And she had a heck of a lot of joy and she pulled us along, as a students of life with her, as she faced. Big medical challenges and chemotherapy and radiation and surgical resections. And, in my mid to late twenties, during that time I'm in having two children, then, we learned a lot about, the power of joy and, that experience.

certainly not my academic experiences up to that point. but my, Personal, experiences and being a learned learner of life, brought us, to, think about creating an organization. that was not yet, it existed it's in the United States and I'm super proud that the children's cancer association.

has continued over the last 25 years and that kitchen table, has gotten much bigger and we now serve over 21 children's hospitals across the nation with joy based programming that reduces anxiety, stress, perception of pain and increases, wellness in children, facing life, threatening illness and cancer.

So that's a little bit about the story of origin, but I like to say that in my late twenties, I took a masterclass in death and, it wasn't life, but death that introduced me to. Hope and strength and community and joy and innocence site of facing the death of my oldest daughter in walking through very dark and heavy days.

It was also an opportunity. To remind myself of how beautiful our days on earth are and how limited they are and how much there is to do. And at 20,  at 30 years of age, my daughter died on May 7th in 1995. A mother's day was a mere few days later. And my 30th birthday was on May 20th and we founded the children's cancer association to help solve the challenges that seriously kids face in their isolation and loneliness.

And we delivered the world joy, our ex, so that masterclass, really catapulted me and was the catalyst for me to think about. My role, as a mother, as a community member, as a business leader to make the world a little bit more beautiful, a little bit more profound, than I found it. 

Chris Suarez(09:42):

What I find so powerful in that is that, 

Regina Ellis (09:45):

Roles were reversed for a period of time.

Chris Suarez (09:45):

Oftentimes parents are there to teach their children and all of a sudden Alexandra was teaching you and in effect, what do you think was, were some of the biggest lessons that she taught you (00:10:00) during that? I think you had the blessing for yourself and everyone that was there too. To speak on the TEDx stage and a one number stood out to me.

You said that she fought for 731 days, right? Fought cancer for 731 days. And that 731 days where there were lessons clearly, what was, what were maybe a couple of the biggest ones for you?

Regina Ellis (10:24):

Yeah. Am I going to S When I think about, collectively the lessons learned, certainly, I built personal fortitude around strength and determination around perseverance, positivity and the ways that it can be a catalyst to growth. But when I think Chris about, that experience, I distill it down to maybe, there are three big kind of rules or lessons of life that experience watching, guiding, holding Alex's hand leading from behind being a student of life, three big life lessons that I hope, Our tent bulls of my life today and will be when I'm well, in a few years, 60 and 80 and 90, if I have the privilege to live on this earth for that long.

But, the three rules living and leadership maybe are the first one is just, bust your butt. it's the universal law, but, showing up for whatever's in front of you, whether it's cancer, whether it's COVID, whether it's a new business, whether it's unemployment, whether it's, really dark days or a new business that you're building, how you show up.

Work hard, persevere, bring good people around you and ask for help. Number one rule. Number two is, be a learner, right? It is, ask good questions. Looking at the world. And looking at, walking, I like to tell my kids that walking down the same path that you've been on, whether that's the trail outside your backyard or your favorite nature trail or the sand, meets the shore of the beach that you love to go to.

We see new things free time. We walk those same paths because we have new ones, ways of seeing things and learning, is. I think at the essence of what you, reach out and help teach us, but also, my left my life lesson as well. And, three is certainly, the bedrock of the company that I founded.

It is: give, get and share joy and really the power of joy to change our lives is critical. We only have so many days on earth and what we give to ourselves in moments of joy, what we share for others and how we lead, I believe joy is an absolute fuel for innovation, creativity for teams, for wellness, and for improving the quality of our lives.

I would say those are my rules for living that, came out of, The experiences of my life. And, also, the decades that followed.

Chris Suarez (13:27):

No, it was interesting as one, one and two. probably when we met, I F I feel, I felt good about that. One and two learning and showing up those were easy for me.

Your organization has helped me look at the third one differently. At which is the purpose of the organization healthy or stack. And that is that lesson hold that Alex teaches all of us. Even today. you shared that, during those days she had, and this is what mean my favorite things, because it's such a part of my personal mission.

She had a to live list. Tell us about this list. tell us about what you learned from it and maybe tell us about how that live list brought joy. 

Regina Ellis (14:10):

Yeah. Oh my gosh. That's taken me. I love the quote by Anne Dillard that says, how we make up our days is of course, how we will live. So every day, every moment that we invest in and think about is really our life.

The sum of our life, and Alex to instinctually at  a very young age of things that she wanted. To touch and see, and, squished between her toes. And, she was an artist and, just courageous and honest, and. So she made a to live list and they included things like plants, a sweet pea garden, and, go to the beach in the winter here in Oregon, it's cold.

And, she wanted to do that barefoot because we would (00:15:00) always say, buckle, put your shoes on. Or, and she's I want to feel the cold sand and the cold water rush up into my feet. And we're like, Yeah, we do. We can do that. We trust that cold. And when you're cold, you'll put your socks back on.

And, and she also wanted to swim with the dolphins. And when I saw her put that on that list, I thought, Oh, wow. How are we going to help make that happen here? You have this kid, we didn't know that she was going to be terminally ill, but we knew that. We had to fill up our seat seatbelts and we were in for the ride of our lives.

And, boy, that's when I got really good at connecting with, amazing people out in the world to, help make something beautiful happen for my own family and what I get to do with you and other people now as well. We think about kids in communities across the nation and how we deliver joy based programming virtually.

Virtually bedside now and in hospital and make their lives beautiful. And show them how to use joy. If you have three more days left on this earth, it should be three days filled with some incredible moments of joy. And we all have, I have that ability to transform those and that to live list.

But Alex had right. Really set course, for her and our family too, embrace some magical moments. And it's really what it is left. it is the sum of our lives that, are family and the people that love us. That garden that they continue to tend, those memories and, moments enrich our lives and enrich generations and communities.

that is, that's a little bit about, Alexandra's to live list. Yeah. Such a, 

Chris Suarez (16:56):

such an important message for us is that I think sometimes we hesitate. And we actually push joy away unknowingly because we believe that it takes so much to have it or to experience it. And the word that I love that you use, consistently it shows up in mission and it shows up in conversation is moments, right?

Moments of joy, which by definition. Make them easy if we allow them to be. And I think that's a lesson right from your daughter sand. Root beer flow, 

Regina Ellis (17:34):

planting a seed. Like 

Chris Suarez: (17:36):

These are very simple things that oftentimes we forget how joyful they can be if we allow them to, and we don't create a, just a 17 step process and vacation that creates joy, but it's those everyday moments.

Regina Ellis (17:53):

Chris, it brings, there's a thought that, I believe the state of happiness feels like, a set up, and I get pissed when I look to see like hundreds of books out there. And it makes me feel like that's not achievable this constant state of happiness. Because as human beings, even living now in, the summer of 2020 facing a global pandemic facing an economic recession, facing race riots and people hurting, in every community, across the globe, being able to access and create, A habit of joy is to me, she bubble, and realistic, both as a leader, as a partner, as a parent, as a community member, as a CEO of a company, is that, when we create habits of joy, We set our intention and allow during crisis change, challenge to ignite or seed.

Moments of joy and they, create this beautiful swing, and allow us to catch our breath, to allow us to plant small seeds and little sprouts. and we feel that maybe even in our own home, when you walk up and somebody walks to the door and you give them a hug and that hug has. Physiological changes that happen in our body and moments of joy do that as well.

And we see that with, efficacy and, and research and patient evaluation with joy based programming in music and mentorship, the nature that kids feel better when they have these, Experiences in the middle of coping with a life threatening illness, a terminal illness or chemotherapy. So I know that they work on a personal level when I'm not experiencing those things.

important as we create leadership habits, joy should (00:20:00) absolutely be something that, people consider, Because it works, 

Chris Suarez (20:05):

This, this phrase habits of joy and creating habits of joy. I imagine, at that for many that may not come natural. maybe their upbringing hasn't created habits of joy and your organization comes in at a moment where if it has not been a habit.

They're faced with something that illness terminal or not. It is not something that immediately you can jump in and say, let's create some habits of joy. How do you do that? what can we do? Or how does the organization do that? No music will come into conversation here. what are some of the beginnings of creating that habit of joy?

Regina Ellis (20:44):

Yeah. So as.  we sit in this, virtual, conversation, And people are listening and thinking, I don't have cancer. I don't have a kid kiddo with cancer or hospitalization. And, how does, how is this meaningful to my life? when I think about my role at, as a CEO or a leader or a colleague, that's typically how I look at my role as a coach.

and, as somebody who helps remove barriers or shares ideas or connects people with something that helps them be their best. When we think about habit, right? It takes about six weeks of intention. And many of us can relate to that in terms of exercise, right? Like when, different times in my life, I'm a Jew, I'm a jogger.

I wish I was runner, but I'm not economically built to be a really fast runner. Like many of my friends, I'm a jogger. And I'm going to get out there and see. Slog in the rain and get on my sneakers and run the, I live in the Northwest Hills of Portland and, Oh, goodness gracious. And I feel better.

But when I'm starting, I'm literally making, today, these four days I'm going to do this or when I've started yoga and I do hot yoga. I used to now I do yoga in my living room. but, to create those. Habits. I had to be intentional and Okay, how am I going to do this?

What is it that I'm trying to achieve? So from a, individual perspective, that's how I think about people's intentional habit building, right? in how we show up. What are things that bring us all joy? Those are different things. Maybe it is a walk in the woods. Maybe it is calling, three colleagues and talking about the impact that they've had on your life or offering your support and ideas.

Maybe it's showing up when somebody needs, a lift, right? Maybe it's writing a personal note. There are so many different ways, right? Maybe it's.  creating something that's meaningful to you and sharing it or bringing it into your life at children's cancer association, we've created free access to joy based programming, both in music, which has scientific effects.

to positively impact wellness. And we do that, now and COVID through Burt virtual bedside telemedicine experiences. Yeah. we have an online site where kids can access music, medicine, learn. have lessons from hundreds of different artists, engage in music, to feel better.

we do that through mentorship, joy, RX, mentorship. and in fact, one of your colleagues, John Powers has been a mentor to many young people, that have had cancer and that. Sharing friendship is a very powerful catalyst when people feel better, reduce isolation, loneliness, anxiety, and has On their wellness. And we also do that through joy RX nature, which allow, kids and families to be outdoors. we have some programs through REI. in non COVID environments and we have a beautiful cabin that sits on 20 acres in a Pacific city with it's a private Lake where families get away and untethered from hospital.

And some kids spend the last few weeks or a week. Before, they die, there, and that ability to access nature is a place to, access joy. So from a kind of mission impact organization, we think about joy RX in those ways, from a habit and creating within your family, at your own workplace as a leader, and we're all leaders, whether we.

Meet people and, welcome them, through customer service or we are leading teams or we are, leading companies and, balance sheets and strategy and vision. we all have a role to play, and can easily access that. Yeah, 

Chris Suarez (24:47):

I think it's, I think it's really important for us to, one of the first steps you mentioned was, joy shows up for each of us differently.

And if we have an unpackaged, what it is that brings us joy, simple things that bring us joy. It's impossible to start that habit. It's impossible to begin that habit. You unlocked something that's dare I say, universal. when you started with music and I've seen the videos of the children just light up for that moment when live music shows up by their bedside, or even just listening.

I think all of us have emotional reactions, different songs and different memories and different people. 

how important has music been. As the foundation of creating the habit of joy 

Regina Ellis (25:37):

For children. It's really our flagship program, Chris and 25 years ago, based on, research that we were seeing and also based on what we knew, worked for Alex and also as human beings, realizing that music really is.

The soundtrack of our lives, To plays at funerals and weddings and parties. It's in the car. It's when we meet our saddest days with music, We've had the breakups, divorce, weddings, and we can all, when those songs come on or we hear them, they transport us back to those moments in our lives.

So the power of music to. Change, how we're feeling, is really profound. And music changes our respirations, right at blood pressure reduces stress and anxiety. And these are all things that we deal with in our daily living. But people facing. Hospitalization and life threatening illness deal with it compound, it's compounded.

And so we've created a very clear customized music programs for pediatrics birth to 18, where music is customized for culture. genre age, and we deliver and help curate that experience because we know kids need more than medicine to get better. And we're the only organization of our kind out there doing that.

And, leading and pioneering the science.

Chris Suarez (27:10):

Let me ask you this, you said out 25 years ago on this mission and you chose a way, to solve a problem and it wasn't raising money for, for a cure, or raising money for research to eliminate cancer. Why?

Regina Ellis (27:30):

When I looked around 25 years ago, after Alex died really, days, weeks after she died, there were a lot of great organizations, folks focused on research, right? we had incredible doctors and hospital environments that supported our family and our daughter through two and a half. Years of treatment and what was not available was to think about the medical experience of children and how it is that we could return moments of childhood.

And we thought about that through, joy. And that, lifeline that helped kids move from serious illness, pain, stress, isolation, they're really removed from everything, their brothers and sisters, their home, their school, their playmates.  and they are fighting for their life in a whole new environment.

Enjoy becomes a lifeline, and we saw it as an opportunity to innovate, and catalyze really, And the new way, to care for children and began to champion, wellness and joy based programming in a hospital environment. really before many people were talking about happiness or Joel, I think in the midst of, bald kids and chemotherapy and, I'm really proud that with a lot of.

Incredible leaders and very smart business folks and kind of makers and doers and dreamers. we began to chart a new way to deliver pediatric care. and now, we have the privilege to be around the table thinking about, very powerful, programs and treatments for kids that are more than pharmaceutical and surgical interventions.

Chris Suarez (29:25):

Yeah, what I would, I remember, as you tell the story of what happened is people need to know this is who you are, and this is who you were prior to, right? A cancer diagnosis in your world, because you showed up to the hospital and invited people to play music, right? Because music brought your family happiness.

And as you looked around, you realized, gosh, it. It brought the other children up, their happiness, your family. And he was playing the music and singing and music. And then as you saw other children respond. (00:30:00) And then medical staff respond. I think many of us need to look around and say, gosh, if we were the one to begin the habit of happiness, whatever it was that brought us happiness, as soon as music for you guys.

And now look, you realize, actually that brings a lot of people, happiness. That's the beginning. that's how movements starts. And it brings, it was me too, probably one of the most powerful, Sentences in any mission statement that I've ever come across. And I studied that Hundreds. I'm just saying it moves me personally.

but in your mission station, you say that belief that you, we believe that kids deserve long and wonderful lives. So do I. And the next sentence says, or at the very least short, wonderful lives. What does that mean to you? 

Regina Ellis (30:53):

It is really our intention that children's cancer association, as we look to, creating joy RX as a standard of care and, In hospital environments across the nation and across the globe.

We are, we also realize that cancer is the leading cause of death by disease in the U S for children, from birth to about 21. and that there's, it's a reality that kids die in car wrecks, some face serious illness. And we are there to serve kids, in their greatest moment of need. And we do that, in, through joy based programming.

And we're not just there for kids who are going to get better. We're not there for just kids who are going to die, but we're their kids. When they walk into a hospital and their childhood, it's something that they look behind their shoulder at, and they're looking in front of, one of the greatest challenges they've ever faced, and we want to be on the other side saying.

We got you. And here's some small things that you can grab and hopefully they are a lifeline that will pull you through this experience in ways that are meaningful to you. And we want to provide those free to children and families and hospitals and Chris I'm. I'm a leader that believes in, we put something out there that is so big, right.

And all the people listening and who tune into you and who you coach and inspire. That when we think about something that we might not even live to see, but we are going to build and persevere. And just show up every day and work toward it. Those are the things that, they're game changers.

And I never thought when I was in my twenties and just 30 years old that, when we began to think about the power of joy, And. How we could help kids that I would look back and say, this organization has inspired over $78 million of investors and that's lemonade stands from children. That's financial investments from companies he's like PDX property, who say, we believe in this too, from family foundations, from, buys funds from people writing a $25 check from people buying a raffle ticket or learning about how to share their joy with CCS.

And we pass that on. I never thought that would be possible. I never thought that last year we would. Crossover, the 1 million service interaction served in the United States to kids. And I'd never thought we would be at the table with hospital administrators and scientists and parents and young adults, that face serious illness thinking about a better way, a human centered care that, joy RX would be a part of.

So if I can do it. if I can dream it, so can you, And, it's accessible to everybody. it just is show up, be a learner. And give, getting, share your joy, whatever it is. and I think those are just beautiful life lessons that you do not have to have a pedigree. but use the kind of master class that you have signed up for, That life has provided you. Take it and jump. And go because as Alex taught me, she had five and a half amazing years on this earth and she lived her days fully. And I'm 54. And I don't know how many more beautiful days, more hard days, more difficult days that I have left, but I'm going to make sure that I'm (00:35:00) giving, getting and sharing joy in meaningful ways.

and I hope when my days are done that people stand around and, Up throw purple, glitter and say, my life for a few moments, we're a little bit better because Regina was in it because, she gave me a hug because she believed in something because she shared a book because she said I could do it.

and, pass it on, pass on whatever you've got. to somebody else. And it just is the kind of world that I want to live in. and, I just think it's important as leaders and community members that people realize the power that they have, in their own hands and heart.

Chris Suarez (35:42):

I assure you that there will be purple, glitter.

And there have been right. Millions now touched by a mission that was based on it. Wasn't based on the outcome. It was based on the present. It was based on whether this is going to be years or days it's going to be wonderful. 

Chris Suarez: (36:05):

And that is so present in your mission and how you show up and how you show up to others.

And actually, I'll and I'll end sharing. it's a statement that you've, you make constantly, and it's actually in your mission statement. It says we believe joy grows exponentially when it's used collectively. And as those statements that you just made. You uttered? All I could hear is, yeah, it does grow exponentially.

and as we think about our last day or the day after our last day, Interestingly enough, you've created a world around you. That joy has grown because if you being willing to use yours collectively and invite children or nurses or doctors or strangers, or where people that you don't even realize, or know personally, just collectively shared that joy.

and it is such a part of our mission of building experiential lives. Long live short life, middle doesn't matter, as long as they're there, live with joy and experience. last question for you, Regina, for our audience that is moved, to deliver joy, how do they get involved? How can we help you? 

Regina Ellis (37:19):

Thank you. if you want to learn a little bit more about what we do at children's cancer association, or if there's a family that we can serve, or if your family, your team, your company, you want to be involved in giving and getting and sharing joy, you can go to joy rx.org and learn a little bit more.

you can check us out on our social handles. We're on. Facebook and Instagram and I'm sure Twitter and, get connected to, the power of joy. I would want to close with a few things. one is that I think it's important to remember that, where the CEO of our lives. And so wherever you are on that continuum, maybe you're in. school, maybe you're a graduate, maybe you're, emerging business leader or you're a state at home, person and drink. I'm thinking about creating something for yourself. You can do it. You do not need a pedigree. You can live your life and build, from right where you are today.

and I'm in the perfect example of a beautifully flawed, imperfect, loud Italian,  believed in something so much that I created a world that I wanted to live in after my daughter died, that I am deeply committed to today. and I hope that I stand as an example to others that, Be a CEO of your own life and create the life that you want to live. And you will. 

Chris Suarez (39:07):

I love that. I love that. Thank you for sharing a few moments of your life and sharing your joy and sharing your mission. With our audience, it is, It is so in line with our whole purpose of really building experiential lives and growing experientially as well. Yeah, I can't thank you enough.

We will, she needed to support CCA, as long as we enjoy experiential lives on this planet. and I promise you that.