00:00:00
You’re listening to episode 184, Casey’s Story free resources to bring Families together. Hello, my friends. Welcome to Child Life On Call on call. This podcast is a safe place for parents to share their stories about what it’s like to have a child that has a medical experience, diagnosis, disease and or everything in between. We know there is power and sharing stories, and that power multiplies when you can listen to other parents who have walked a similar path to yours.

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Giving and getting advice is great. But hearing how another parent navigates the complexities and nuances of healthcare is even better. As a Child Life On Call specialist, my role is to support, validate and provide emotionally safe spaces for kids and their families. And I am so honored to be on this journey with you. In addition to parent stories, we sprinkle in some expert episodes every now and again that have content for both parents and professionals in the field of healthcare, all with the mission to empower parents to be confident advocates and partners with the care team during healthcare experiences.

00:01:05
We’re so glad you’re here. Hello, my friends. I am so excited to introduce you to Casey Baynes, who is the founder of Casey Baynes, which is an organization that seeks to provide so much support, love, entertainment to children and families in hospitals. She is literally one of those people who you watch and you’re like, oh, I want to be a part of whatever she is doing. She talks about how her experience as a volunteer in the hospital when she was a teenager completely transformed her life and now the trajectory of her career where she gives families things that make them feel like families when they’re in the hospital.

00:01:45
So, whether you are a parent or a professional today, Casey Baynes absolutely has something for you if you’re a family or you if you’re a professional, to offer to families, because sometimes you just don’t have the capacity to go out there and make this magic happen yourself. But Casey Baynes is there for you. So I want you to listen closely to all of the things that Casey Baynes does and where to go to their website so that you can follow along with them and learn more about all Casey and her foundation is doing to help families all over the country. Well, Casey, I’m so glad that you’re here. I have heard your name and your company around the pediatric healthcare field and Child Life On Call, so getting to talk with you personally and learn more about not only you, but what you do is really exciting.

00:02:31
So please introduce us to who you are and a little bit about your family, where you live and all that good stuff. Hey, gang. It is so wonderful to be here. I am Casey Baynes. I am the founder and the executive director of the Casey Baynes Foundation.

00:02:45
When I started Casey Baynes in 2000, it was like many things by accident. I was volunteering in a hospital, in a children’s hospital. My background is logistics. I was running my family’s logistics company and met this little guy who wanted to meet a race car driver. And I love sports, always very involved in sports in high school and college.

00:03:06
And I was like, oh, I can figure this out. And he wanted to meet a race car driver. I was able to coordinate the race car driver to come in in his whole gear, the get up, the hood of his car. It was off the charts. And as the magic was happening and the media was capturing it all, I kind of excused myself and heard this little boy next to us say, I wish I had cancer.

00:03:28
Maybe I’d get close up too. And at the time, I was 20 and I was shocked. And I went out to the nurse’s station and I was like, oh my God, you guys will never believe this. Guess what I just heard? And they’re kind of confused because I just walked out of this amazing environment.

00:03:45
And when I told them, this lovely nurse jumped right in and she’s like, girl, he does not want cancer. He wants somebody to understand what he’s going through. And with that, I became obsessed with helping all critically ill children. Not just cancer kids, but kids who have heart defects, have blood disorders, have organ transplants, you name it. Even undiagnosed kids.

00:04:08
Casey Baynes is really devoted to helping them from the time they’re diagnosed, throughout their treatment, and even beyond. Oh my gosh. So you really had that AHA moment which kind of changed your life forever, and that was the direction you were going to go. That’s how the world works, right? People always talk about, oh, what was that AHA moment?

00:04:29
Still to this day I talk about it, but I didn’t know in the moment. I didn’t know it was happening. I was 20 years old, running this international logistics company. How cool with my brother and my father. That’s every girl’s dream.

00:04:42
Well, this girl’s dream. Yeah, it was amazing because I’ve always been very family focused. And the kind of funny part is we grew up Catholic. If you didn’t make it to church on time, you had to volunteer before Mass the next week. And I didn’t know my parents had a little method to their madness because I got so much out of volunteering that I loved it and I continued to do so.

00:05:08
So it’s just interesting how the world works. Now we have three children and as you mentioned, we split our time between Florida and Maryland, and our daughter was diagnosed with rheumatoid arthritis when she was 13. So she’s been through the gauntlet and continues her journey. She’s 22 now. But yeah, it’s interesting how the world works, right, how I started Casey Baynes well, before I had children, and who would have thought but our daughter would be the picture of what a Casey Baynes child needs in life that wasn’t supported.

00:05:45
Well, thank you for sharing that with us. I know that’s probably not an easy part to talk about and kind of go back to the beginning when something’s happening with your child. It’s really difficult and scary and isolating and, oh, my gosh, how lucky to have a mom like you to help her through it. Yeah. And it’s interesting, and I’m sure your listeners have been through this, too, is that while I would have been the best candidate I mean, that respectfully to have a critically ill child.

00:06:13
I listened a lot to the doctors, and they told me not to worry. And she was misdiagnosed for three years. They told me not to worry. They told me it’s just because I’m surrounded by this. That’s probably where my mind goes, and it’s growing pains, and it’s this and it’s that.

00:06:27
It’s lyme disease. It’s all these other things. And I think that’s what we do as moms, right, as parents, is we look back and wish we would have fought harder or wish we would have had the knowledge that we have today to go back and fix them, even though that’s not a thing. Unfortunately, no. It’s so true.

00:06:48
And it’s also very different when it’s your own child. And I feel the same way that you right. Like, every Child Life On Call bone in my body goes away when my child is the one going through something, and I rely very heavily on other you know, I’ve been to the doctor before and watched them hold my child down for shots, right. And I’m, like standing there in the room with my eyes open wide when I know very well what to do. It is very different, and that’s why it’s relying on people like you and Casey Baynes and incredible family centered physicians and organizations to make that difference for us when we can’t do it.

00:07:26
Absolutely. And that’s the beauty about being involved in organizations like Casey Baynes, because it is such a wonderful, eclectic group, and I have never been a part of somebody or some group that’s so positive and so uplifting that everybody is in it together and very supportive of each other, and that’s just so beautiful and much needed. Yeah. Well, so you started with the race car driver for that little cutie that you met and to today, walk us through what the lifeline has been like and what your journey has been like. Oh, my gosh, what a journey.

00:08:05
But I will tell you, throughout this entire journey, we’ve never denied the request of a critically ill child. So some of the things that go through my mind as I go through the timeline so Casey Baynes started in 2000. We’ve been doing this for over 24 years, and it’s been pretty amazing to say that even through all the different things, we’ve never denied the request of a child. We started out just being Maryland and pennsylvania, mid Atlantic based. And because there are so many great hospitals there, we grew very quickly because people come to get treatment there, and then they go home, and we are not about to say, all right, see ya.

00:08:43
It was great having you while you were here. So at Casey Baynes, we help really take care of the whole person and the whole family. So it’s all about that palliative care that is so vital in all of these children’s treatment. And we help the brothers, the sisters, the moms, and the dads. My parents lost a child, and my family knows the impact it has on a family’s life, on a parent’s life, for their entire lives.

00:09:14
So that’s why at Casey Baynes, since day one, we’ve started helping families even after the loss of a child, because that’s a whole nother area. And a lot of other children’s charities will say, we’re so sorry for your loss, but you no longer qualify for our programs. You don’t have a critically ill child. And we get that. So we’ll sometimes pick up from organizations from there and help and offer those same programs, because these families, whether they have other children or they don’t, they need to get out and experience life and pay honor and tribute to the child that they lost.

00:09:50
So we still provide the same programs to families, which is pretty unique and really special to see. And at the same time, we have a lot of the families who come back and they volunteer and they participate. One of the programs that we offer at Casey Baynes so we look at Casey Baynes and this is what your group really, I think, will resonate with. You guys know that in the treatment cycle. Is it awesome to go to Hawaii?

00:10:13
Sure. Is it awesome to get a wish? 100%? Absolutely. But you guys all get it when you’re super sick, when you can barely get out of bed, are you going to be jet setting off to Hawaii?

00:10:25
Probably not. But what you can do is get your strength together or have somebody give you a little support and go out to the family room and enjoy a movie and pizza night with your family. And that is one of our most popular programs because it’s that family time. Our families don’t need to request it. They automatically receive it on an ongoing basis.

00:10:47
They get it in the mail, they pop it on their fridge. They can redeem their little Netflix and their DoorDash whenever they want. And it’s just a fun way for that family time to get together. And when they have a child, that’s immune system is weak. They can’t go out anyway.

00:11:02
So it’s a really great option for them as well. Oh, I love that. And it brings the family together in a place that normally is scary and normally has a lot of unknowns and is a threatening environment, and you make it feel like home, and that’s it. And sometimes you can’t be home. So then Casey Baynes will have at the nurse’s station, there brand new pajamas for all of the kids.

00:11:30
And the cool part about our Pajama program is that it’s Cammie’s Jammies, and it’s named after a little girl in our programs who lost her battle. But she, like so many little girls, love dressing up like a princess. And she was not about to let that subside when she went into the hospital. So she would always request princess dresses. And when she was in the hospital with Casey Baynes, so after she passed, her grandma was like, I would love to take this to the next level.

00:11:59
So now, a lot of families, as you know, they go from the doctor’s appointment, they’re referred to the hospital, and before they know it, they’re staying the night. And they did not anticipate it, or their child gets sick on their clothes. So we have pajamas there at the nurse’s station. The kid gets to go over, pick out their size, pick out their favorite character or their favorite color, and then whoever gets to stay with the parent, the parent that stays, they get a pair of pajamas, too, because they certainly weren’t expecting to stay. And of course, we give them a little bag that has everything that they would need.

00:12:31
Yes, pad and paper. Because these thoughts that go through your mind as a parent aren’t always good thoughts, I’ll grant that. But it’s important to write them down. So when the doctor does make their way, you’re not totally flustered. You can kind of go back to your piece of paper and ask, Toothbrush.

00:12:47
Toothpaste. These are basic deodorant, basic things. But, gosh, they’re so appreciated when you have nothing. And the feedback we get from our families, which gives me goosebumps right now, is like they’re like, we thought our world was crumbling, crumbling. And then our little guy got SpongeBob Square Pants pajamas, and he smiled, and they were like, that gave us hope.

00:13:10
And I got a toothbrush. And those are the things that make you realize, like, this is not going to be fun. This is going to be hard. But guess what? If we all pull together and help and support one another, we can make it.

00:13:24
And that’s what our Cammies Jammies programs really does for our families when they’re in the hospital. That may be my favorite story ever. So my daughter’s name is Cammie, or Cameron. We call her Cammie. And so I just love that.

00:13:38
And you’re right. It’s those little things that families remember. I mean, I’ve talked with over 150 families on this podcast, and even more working as a Child Life On Call specialist. And what they come down to are those moments that make them feel like a mom or a dad or a kid or a sibling. Like, I’m just who I am.

00:13:59
I’m not this person with a diagnosis. I’m not a parent. With a sick kid. I am a mom. I’m a dad, and somebody else did this for us because we don’t have the capacity to do it for ourselves.

00:14:09
Right now at Casey Baynes, we have no financial restrictions whatsoever. You can be the wealthiest family or the poorest family. None of that matters. It’s a level playing field when your child is diagnosed with a critical illness, and we are there for them. So it’s about, like you said, about being a mom and a dad.

00:14:31
And a lot of times when your child is sick, you feel helpless, because as a parent, that’s what we want to do. We want to help our kid. We don’t want them to feel pain. We don’t want them to suffer. And now they are uncontrollably suffering in pain.

00:14:44
And that’s why all of our programs are offered across the board to everyone. And we do do the amazing outings, whether that would be a trip to the beach or an overnight at a indoor water park, when the family is feeling up and feeling able to do it. We have this one little boy, Ashton, who’s in our programs. He had a stroke when he was six months old and totally surprising, and he’s been in our programs for a very long time. And he was given the opportunity to throw out the pitch at the first pitch at a Baltimore Orioles game.

00:15:19
And his whole family was there. And he’s a wheelchair, and they’re helping him out to the field. And I’m standing there with his dad, and his dad is just full of emotion. And he’s like, I never thought my boy would play ball. But look, he made it to the bigs.

00:15:37
And you just want to be a parent, like you said. You just want to be proud of your kids playing sports and playing sports might look a lot different, but look at that. He got to see his boy, and he’s like, do you know the percentage of kids that make it to the bigs? He’s like my kid did, and he was so proud, and I love it. That’s what it’s about, is taking care of all these kids and taking care of their siblings as well, because you guys know a lot of these kids.

00:16:04
The siblings act out some in good ways, some in not so good ways, because their perception is mom and dad are spending so much time with this sick kid, and while they know it and they don’t want their sibling to be sick, they’re kids, right? So they’re really starving for attention. So a lot of times we’ll encourage our families, hey, we’ve got these great seeds to an ice hockey game. I know your younger son likes ice hockey, and they’re like, oh, I know. But our other son, he can’t go.

00:16:31
He’s in the hospital. We’re like, we know you guys go. Whoever can go. Take his best friend. Take a neighbor who’s helped go out, enjoy time together.

00:16:39
And that’s really important to us because my husband Mike, he grew up with three siblings that all had juvenile diabetes. Mike does not, which is super rare, especially in the mean pancreatic transplants. You name it, these kids or then kids have had it. So he understands and has brought that value to the organization that we need to help everybody. Because when your child’s diagnosed with a critical illness, the ripples of that diagnosis are felt throughout the entire family.

00:17:10
Mom feels it, dad feels it differently. Brother, sister, everybody is feeling that diagnosis, even though the diagnosis only rests on the one child’s record. That’s incredible. Well, the million dollar question that I just keep thinking about is for parents who are listening and want to perhaps get involved with some of the programs or the professionals that want to refer families. How can they do that?

00:17:37
And I would like to know how we can support and spread awareness about Casey Baynes. Oh, my gosh, it takes a village. So anybody who is interested and willing to help, please, and I promise it will bring so much joy to you. I mean, that’s how I started. That’s how I got involved.

00:17:58
These families need to cram a lifetime of memories into a few short years. So we do depend on the masses. We need people’s help in spreading the word that Casey Baynes is there for all critically ill children. We need help letting people know that just because you enroll your child in Casey Baynes does not mean they’re not going to make it. It doesn’t mean that.

00:18:20
It means you’re joining a caring community who is going to support you from today until your child is in remission. And when that child is in remission, we’re going to be knocking on your door saying, hey, you want to volunteer with us? You want to intern? That’s cool. It’s so cool to be able to listen to the people in our office who were in our programs and talking to parents and families now.

00:18:44
So we need people to understand that when you enroll in Casey Baynes, it means that you have a positive future. We promise. It may be a different future than you envisioned, but it will be the most supportive community that you’re part of. And there’s no financial requirement. Some people feel like, oh, we can afford that, and I’m taking it away from somebody who can afford it.

00:19:05
Untrue untrue. We’re still going to make sure Billy has the same great time whether you were part of our programs or not. So you’re just hurting yourself if you’re not enrolled. So please, everybody enroll. And this will really bring your family together, connected.

00:19:21
And it really is about those little moments and lasting memories. Our application process is very easy because I know firsthand how much paperwork you fill out, how many questionnaires, how many initialing of things you have to do. We don’t do that we have a one page application because we want to know about you. We want to know what your child’s like. We want to know about your family dynamic.

00:19:44
So you can go to Casey Baynes. C-A-S-E-Y cares. cares.org. You can find out information about us. You can download an application.

00:19:54
You can ask your social worker, Child Life On Call specialist for an application at your hospital and fill it out, get it to us. We have so many programs. I know that we talked about a few of them, but that’s it. We just talked about a few of them and there’s so many more things to offer and we depend on our families to give us information of what you need and when you need it. Then there’s also lots of ways to get involved and to volunteer and to support, whether it’s donating a new pair of pajamas or going to our Amazon Wish List or going to our website and seeing that you can for $50, help support a movie and pizza night, or help support a family who just needs to get out and enjoy a day at the aquarium.

00:20:37
There are so many ways to get involved, whether it’s you, your mom’s group, your friends. Instead of exchanging gifts at the holidays, you can make a donation in honor or memory of someone. Oh my goodness. Well, so many ways to get involved and it sounds like a good place to start is just Caseycarris.org and I for 01:00 a.m. So grateful for people like you who are driven and passionate and are not going to stop and just continue to be a positive spot in so many dark times.

00:21:05
So thank you so much for what you do, Casey. I’m so grateful. Thank you so much for having us and helping to educate people that we’re here as a resource and we’re also here as a way to enrich your lives, your children’s life, by giving back and getting involved in the community. Well, thank you so much, Casey. I would love to speak with you again and learn more about your programs or talk with a family who know been impacted by Casey because you’re just doing amazing things.

00:21:32
So thank you. Thank you so much.

00:21:36
Thank you all so much for listening to Child Life On Call On Call. If you head to our website, Child Life On Call On Call, you’re going to find all sorts of stuff there for parents, professionals, healthcare providers, Child Life On Call specialists, no matter who you are, actually, when you just go to our homepage, it’ll tell you. It’ll help you direct to exactly where you need to go on that you’ll find opportunities and PDUs for Child Life On Call specialists parents. We’ve got a starter kit for you and clinicians. We even have a clinician course which teaches you how to be a confident and capable caregiver in pediatrics.

00:22:10
We’re so grateful that you’re here. Please DM us on instagram. And like I mentioned, when you rate and review this podcast it helps other families be able to find us. So let’s keep doing that and I will see you again here next week.