Transcript generated from the episode’s automatic captions. Speaker names are not identified, and automatic captioning may misspell names and terminology. Please refer to the video for the authoritative version.

I want to thank you for joining us on today’s episode of the Cancer Project podcast. We’re really privileged to be joined by uh Katie and Casey Van Arnum. Um Katie is a uh cancer survivor. She was diagnosed with lymphoma um at a young age. Um and she’s going to talk a little bit about that experience. And then um through that experience, she identified a very specific need and has created an amazing uh platform and service for other pediatric patients called Courage TE’s. And we’re going to talk a little bit about that. And so we hope for people listening that this is an encouragement if you um or you have a child going through pediatric cancer treatment.

Um but we also want to make our listeners aware of this amazing resource with Courage Te. So um Katie and Casey, thank you guys so much for taking the time to join us today. Yes. Thank you for having us. Thanks for having us. We’re so happy to be here. And so you guys are located in New Jersey right now. So currently in Los Angeles. My mom’s helping Oh, you’re in Los Angeles. Okay. He’s [clears throat] helping with the move, but we’re you’re in New Jersey. I live in New Jersey, and that’s where Katie grew up, but now she’s in college, so she’s out here. Okay.

Los Angeles. And so, Katie, where tell us uh just about your college life. Where are you going to school? What are you studying? Yes, I’m at um University of Southern California studying journalism and entrepreneurship. I’ve been loving it. It’s been a great experience. So, I’m super super grateful for everyone I’ve met here, everything I’ve been able to do while being here. And what took you out to LA? I mean, you you said you grew up in New Jersey. That’s a big move across the country. You know, it’s a great question. I feel like in high school, I just had this desire to go to California.

No real explanation for it, but go to California and just experience a new and different environment. And I think when we came and toured USC, we were just in awe of how great it was and how many resources there were. And so it was kind of just an automatic yes when we saw this place. And they they emphasize working together. So they they said directly, if you’re interested in competition, this isn’t the school for you. This is the school where we help everyone to succeed and we all work together. So that meant a lot to us, that collaborative. Yeah, that’s great. So, Casey, how has it been for you having Katie across the country?

Oh, I miss her so much. Right. But I’m so excited for her. I’m just so happy that she’s living this incredible life. Just Yeah. Yeah. And then uh so Katie, tell me, do you have siblings? Uh tell me a little bit about your your extended family. Yes, I have an older sister and brother. My sister is actually in Davis, California, getting her PhD in environmental education. Becca. Becca. Yes. Okay. And my brother Jake, he’s in New Jersey, um, a close to where we grew up and he’s in accounting. Okay. [clears throat] Um, I had a sister that lived in Davis, uh, for a period of time.

She was at Travis Air Force Base. Okay. There. So, she was she was a nurse in the Air Force. And so she actually uh lived in Davis at the time. Wow. So I am familiar with Davis. Yeah, Davis is lovely. Have you visited Davis, Katie? I have. It’s so nice. It’s lovely. Yeah, it I feel like it’s just such a nice downtown. They have outdoorsy things to do. Yeah, it’s great. And so tell me your favorite part about LA other than obviously being at USC. What’s what’s kind of been like a highlight for you of being in this different city? That’s a great question. I think there’s just so much to do.

There’s just like going to the beach or you can go on a hike in the mountains or there’s always an activity happening on the weekend, some type of market. I feel like I’ve been able to do a lot of things that I’ve just never tried before um coming here which has been just the best experience. Yeah, that’s great. And what um so you’re studying uh journalism and entrepreneurship um and I do have Spanish in my notes too. Is that uh are you are you still working on your Spanish? Yes. I’m not like it’s not included in my curriculum anymore. Um Okay. I’m trying I’m trying to learn.

That’s still a goal of mine. Yes. Yeah. Yeah. Well, it’s interesting because there’s a difference between like uh you know classroom Spanish and conversational Spanish and you are in a good spot to really get conversational Spanish down really well. Exactly. Yes. I’m trying. I’ve been I’ve you’re practicing, right? I’ve been practicing, but [clears throat] I I actually just like a week ago I started watching daily YouTube videos so that I can really focus on it. So yeah, hopefully in the next few months I’ll be conversational at the bare minimum. Yeah, that’s amazing. So Katie, tell us about your mom. Tell us about Casey. What if you could just maybe describe her in a few sentences?

What’s what’s she like? She’s just the best. I don’t know. Like she’s um I’m just so grateful to have her and have our relationship. I always feel like I I always feel like my mom’s super there for me. S so supportive and just trying to find ways to make whatever experience I’m going through or whatever wherever I am in life just very joyful. Um she’s just so thoughtful like always constantly thinking of things to do for me or bring like to when she visited she made these oatmeal muffins, chocolate chip muffins that we used to make when I was little and made them nice them on the plane here cuz she just thought of it for me as something that might feel like home or might feel comforting.

Um and also just so much joy I feel like I’ve been able to get from her or inherit from her. just I love the way that she sees the world and ability to see joy in community and talk to people and it’s just a very beautiful thing. Yeah. Yeah. That’s amazing. Do you agree with that, Casey? Um yes, I do think that I am pretty joyful. Just find I just find the smallest things wondrous and Yeah, that’s amazing. Well, and so now uh your turn, Casey. You tell you tell us about Katie. How would you describe Katie? My gosh, she’s uh just extraordinary. Just an extraordinary person.

And I I’ve always said to her, I hope you’re proud of yourself. I’m proud of you every day. Whatever you do, I’m proud of you. Just who you are. She’s so thoughtful and so poised and adventurous and kind. Uh, I love that about you, how you really just he can talk to anybody and really sees the person. Yeah. You’re really present with that. Um, and I love how adventurous, especially out here, all the new things that you’ve been doing and yeah, with the business trying. So, the the entrepreneurship is a minor, but Kate was in a contest for I don’t know, is it a contest?

Pitch contest. So, just really put so much effort into that and you’ve made such great friends and you are such a great friend. Thank you. Well, that’s beautiful. Um, I love the connection between the two of you and I’m glad you guys are in the same place, too. So, I get to really see that. Um, what And you won that pitch, right? I did. Yes. Um, yeah. So, tell tell us about that. What was what tell us about that pitch? Yeah. So, it’s it was a competition through USC um new venture seed pitch competition. It was actually my second year competing. The first year I had made it to the semi-finals final 16 teams.

Um it’s like you basically go through different rounds of judges and you pitch your business idea, any progress that you have um your financial goals to judges and then each round you move through until you get to the final round. Um there was also like a month of coaching before that final round where they helped us just develop both our businesses, our ideas and our ability to kind of communicate that. Um and then the final round was in front of a room of people and we had judges and it was just a great experience. And then afterwards we had like a celebratory um event where everyone would just have a little table that showed their ideas and they announced the winners.

And I was just it was just incredible. I took away the top prize and yeah it’s been it’s been such an amazing thing to push courage further um and really give us the resources to succeed and keep moving. What did you learn about yourself through that process? Because that sounds like a pretty intense process. Yes, it was a lot of like it forced me to step outside of things that I was comfortable with. I think I’ve always enjoyed speaking and talking to people, but I’ve had I’ve felt very nervous doing so in large groups, in front of large groups, especially talking about my cancer experience.

Um, that was probably honestly the biggest hurdle at the very start of this business is that by working on this and doing something that was really important to me to get these shirts out to other kids, I had to talk about my own experience, which was something I kind of shied away from because it made me feel very vulnerable. Um, and I suddenly had to do that in a room full of lots and lots of people. And I think I gained a lot of confidence and belief in myself. And when I first started, the way that I spoke was very nervous and unsure and I had a lot of self-doubt.

Um, but I think I kind of recognized my own strength and that I was really capable and by sharing my experience, I connected with a lot of people and it really helped them as well. And that was something that was very, very interesting and rewarding to see. Mhm. Especially just just how many people you meet that have a connection with cancer. It’s astounding, especially when you start talking about it. And it was nice also for me to be able to meet so many people and talk to them and share an experience that had often made me feel very alone. Did you end up meeting people through that process that had gone through a pediatric cancer?

I had Well, I actually had. So I ended up um going to different events that I had learned about through that experience where I met people my age who had gone through pediatric cancer. Um I also met people who had kids undergoing treatment or had just finished treatment or family members. Yeah. So um let’s if you don’t mind uh go back and talk a little bit about the cancer experience. Um, and so I’ll let you kind of go and talk about what you remember and then Casey, um, would love to get your perspective as well. I mean, I know that this was something that happened, um, starting back in, uh, before third grade.

Um, and so just take us back to kind of the beginning and what happened with the diagnosis and treatment. Yes. Yeah. and feel free to fill in anything I miss. But um it start it took eight months to get the final diagnosis. Um I was diagnosed with a lot of different things. I had a lymph node on my neck. I had pain in my arm that turned into a broken arm and I was sick a lot of the time. Um and a lot of the doctors that we saw would diagnose me with separate things and couldn’t really figure out exactly what was wrong. Yeah. And that was a lot of it was because Katie’s blood work was always spine.

So they u couldn’t find anything else and the Yes. Yeah. And so you’re And so you’re what eight eight years old? Eight. Yeah. About it this time. Well, sec the second half of second grade is when we were trying to get her figure out what’s wrong. Yeah. And I mean what do you I guess Katie, what do you remember? Because it’s probably hard. Like I have a seven-year-old and I can’t even imagine her having to try to describe these pain symptoms or or describe things that she’s feeling in her body, but she doesn’t have the the verbiage or the experience to maybe really pinpoint exactly what’s happening.

She just kind of would know something was wrong. So, how are you even trying to communicate or what were you aware of at that point? That’s a great question. I definitely remember being sick and in pain and just not really sure what was happening. And I remember I have I feel like I have a few very distinct memories. Like I remember going to one doctor and telling him that my pain was a 10 and him saying like, “Are you sure? Because you’re not crying. Like this is what that would look like if your pain was a 10. ” And I remember being like, “No, like I’m in so much pain.

It hurts. wasn’t, I guess, as expressive as they expected me to be. And I remember that. And then I remember when we finally figured it out and I was on in vacation with my cousins and my grandparents and you guys found out, my mom and dad found out and had to pick me up in the middle of the vacation. So, they met my grandfather halfway. And I remember when they first told me, I remember what I was wearing. I remember little polka dot and striped shirt. I remember being in the living room of our old house and the my parents have been divorced since I was five.

So them being together in the living room sitting down, you know, something’s wrong. Yeah, that right. Um, and I remember them telling me, and I know I asked another question before, but the the only thing I remember asking is, “Am I going to lose my hair? ” Um, but your first question was, “Am I going to die? ” Yeah. You’re at that age. You knew. Yeah. Yeah. And it felt I think it because I was so young in some ways, it was just like, okay, this is what I have to do to get better. And so, I was just going to do it. and I didn’t really know that much more other than my life was going to change and I was going to have to do these things to get better and that was going to be it.

That was all I could do. The great thing um was that you really listened to us. So she [clears throat] she listened to us. trusted us and did what was needed because we had certainly seen examples of older kids who had a much harder time and resisted treatment which I can’t imagine as a parent how that would go. So she was old enough to tell us how she felt. Yeah. I’m very thankful for that. How did you end up I mean you said that there was this eight-month period where there was symptoms but you didn’t get to a diagnosis. How did you actually what did it take to actually figure out what the problem was?

So, it started that Katie had what they thought was a broken arm and later we learned was probably a tumor site and that was January. And then we kept going back in June we ended up at the emergency room where they with a swollen lymph node where they diagnosed her with three separate problems that it didn’t make sense. But of course, like everyone you’re walking out of there thankful not to have the cancer diagnosed, right? And then we were on vacation in Kate May and Katie was in pain and she does have a really high threshold for pain but she was in so much pain.

The next day we drove up to and the first thing the doctor said was it’s it’s mom it don’t worry it isn’t a tumor. It isn’t cancer because again I think it was the blood work and he suggested go to this incredible surgeon and she was fabulous. She did a biopsy. Again nobody’s expecting this to be cancer. Right after the biopsy, you go off with dad and Jake and Becca to a Phillies game, you know, and then a week later, a few days later, I get the call that says, “The doctor would like to talk with you. ” Oh, wow. Still not ex, you know, now I know what that means, but at the time, not expecting anything.

Yeah, man. So, at the when they called you, uh, Casey, did they have details on what to expect at that point or what the specific type of cancer was or was that things that you kind of figured out? typing it. They were still typing it that that moment. They expected us. So Kate’s dad and I went the next day. They thought we were bringing Katie to get it all started, but she was away on vacation with the grandparents. Um, so and then just things that happened that you learn we didn’t realize at the time, but it was typed wrong. They didn’t realize a radiologist caught a second tumor site.

So that’s just out of an experimental treatment which would have been easier let fewer steroids not as hard on her heart and we had you know so after thinking we’re going that road we had to switch because they wouldn’t let us stay in that treatment and she had to go with you know a more conventional treatment. Um so that part was tough. Yeah. Yeah. So the are there looking back and I’m kind of thinking of this from the perspective of maybe a parent that’s at that point in the in their process. Are there things that you maybe look back now and say, “Well, I wish I would have done this a little bit differently or I wish I would have asked these questions or is it kind of like it’s just so hard to say that?

” I mean, you don’t know what you don’t know. Like how do you think about kind of that those like 8 to 10 to 12 months? Right. I was persistent in that eight. Yeah. Everyone kept saying there wasn’t something wrong and I just kept going back. I do think there was one person in April who did a diagnostic test on you that we maybe who said I think it’s scar tissue from the broken arm but I’m not sure and we could have pursued that more but we I think it’s interesting you have to continue to ad you know everybody says this but you have to be the advocate.

you uh I knew something was still wrong and I just kept pursuing it and pursuing it and pursuing it until we got the diagnosis but still not ready for the diagnosis because no one else expected the you know the physicians didn’t expect it either. So you get the diagnosis um and then I guess you go meet with an oncologist um and the oncologist is like hey here’s what here’s what’s going to have to be done. So what what was the plan that they laid out for you from a treatment standpoint? It was uh super hard treatment for the first six weeks I think right and um in the hospital all the time doing the blood work you know just the nuances that we didn’t realize everyone kept saying it’s your new normal and I’m like no no now this will never be my normal but it does become um it does become that it was super hard treatment and then they did an easier treatment and then we had to do super hard again right and then easier again.

So for third grade, I was in the hospital probably 4 days a week for like 6 to 7 hours. So I was home like my actually I was really really lucky to have this wonderful third grade teacher who would come to our home and do lessons for me. Um but I was out of school and we didn’t expect it. We thought Katie would go back to school after the hard treatment. But in the middle of this treatment where her white counts are zero, she needed an appendect appendecttomy. Yes. So, oh related to the treatment or completely independent of that? I don’t know. I would say independent, right?

Hard to know. Yeah. Hard to know. But that did it. And so this is and to be specific when we’re talking about hard treatment, this is chemotherapy that you’re going through. There’s no radiation. It was all chemo. Yeah. And and it’s the the diagnosis was because I don’t think we’ve uh touched on this yet. It was lymphoma. Non-hodkkins lymphoma. Um non is that correct? Yeah. B cell non-hodkkins lymphoma. Non-hodkkins lymphoma. Okay. And what did they what did they say? I mean like you’re you’re meeting with this oncologist. I know that pediatric cancer is just rare in general, but then I think I would assume like non-hodkkins lymphoma in an 8-year-old is even more rare.

I mean, did they say like we see a lot of this or we hardly ever see this diagnosis? It is a more common diagnosis uh as far as lymphoma goes. Uh we were fortunate we were at CHOP Children’s Hospital of Philadelphia. Okay. One of the leading centers. Um, I can remember we were just talking about success rates of survival and Katie’s dad, Mark, said, “Well, really, it’s either 0% or 100%. ” Like, okay, you know, that’s all that’s going to matter for us is that it’s 100% chance of, you know, that that’s what the outcome is. I think we really trusted our physicians and the nurses.

I mean, everybody there was extraordinary. Yes. Yeah. And so you how far of a a commute was that from where you were living. We’re so fortunate. We were right over the bridge. Yeah. So from Philadelphia, we always talk about right over the bridge, but um yeah, only about 20 minutes away, maybe 30. We were really close, which was good because we were back and forth a lot. If the blood I think anybody as you’re going through this, if your blood counts aren’t right, they won’t give you the chemo. So then back home and um we So just lots of lab work. Yeah. Yes. Lots of And how long was the So the the full course of treatment start to finish because you said you had the hard course and the not as hard still hard it’s chemo.

Um but then hard course not quite as hard but so what was that whole process start to finish? How long was that? Two years. Mhm. Um Okay. Wow. Second Yeah. The second year I was able to go back to school but I would miss a week every month to get a spinal tap. Yeah. Yeah. That was one of the other things that we wouldn’t have expected that Kate had a re they would give her chemo in her spine um as part of treatment. Not every time, but Katie had a reaction to it. She would develop this excruciating spinal headache. Yeah. So then there were two people in the hospital who could give her a specialized needle that was super thin and then we, you know, we had to make sure she had fluids and pain medicine.

But that type of thing, if they didn’t have that, it I can’t even imagine you having to go through that every month. That kind of Yeah. And what um I mean, Katie, I guess what’s as much as you remember, what’s kind of going through your head? Like you’re, you know, third grade, was it third grade and fourth grade? And you’re not, this is by no means a normal third grade and fourth grade experience. You’re missing out on a lot of activities and you’re not getting to see your friends. And like how are you just processing this whole thing that you’re going through? I feel like the emotions are so tumultuous because you’re just experiencing so many really really difficult things at such a young age and there’s the first like there’s anger that comes with it.

There’s just frustration and I think especially at that age I was so angry and I would take medicine that would mess with my emotions as well and mess with my hormones and there was no one to be angry at and I think that that was really confusing and frustrating at that age for me. So, I would like get really mad at my parents because I was so upset and there was nobody to be angry to. And then there were just there were moments of just such exhaustion and pain and you’re just kind of there there’s nothing else you can feel except for the pain at certain points and it just feels so like why is this happening?

How can this be happening? Um, and there’s also a lot of attention. Like I grew up in a small town, so there was a lot of attention on me. And in some ways, like my community was incredible. They were so supportive. They brought us meals. They planted a garden for us. They hung up bows around town in my favorite color of purple. Like they just really showed up when we needed them. Um, but there was also a sense of everybody knew me as the kid with cancer. And I hated that identity. I didn’t want that to be all that I was. And so I think a lot of times I felt super insecure being around people.

Um and so it’s just all of this all of this craziness. But there is like it does become your new normal. I remember afterwards when we would go back for um like follow-up appointments, I would feel I would feel like almost a little bit comforted by being back in the hospital because it had been my normal for so long, which is also super strange. Yeah. That age. Um cuz there were I mean there’s all of this that’s happening, but I think we also really did try to make things joyful. We tried super hard. Um we like I would I would have to get shots in my leg at home um at that you and dad would have to give to me and so we would draw faces around where the shot would be to make it just make it fun and a little bit more calm or even in the hospital like people would bring around carts of books and we both love to read and they would bring around like care packages.

Um, clay. Clay. You and dad would always make clay in Yeah. Yeah. Or our neighbors. Like one day I had a tea party and one of my friends brought over her stuffed animals so that I could have a tea party with all the stuffed animals. Like I think that it’s just such it’s so tumultuous. There’s so many emotions you’re experiencing at once. Um, and you’re trying to make it as okay and normal as possible throughout all of that. That’s a long answer to the question, but yeah. No, that I I mean I I I loved what you said and and Casey, for you, um I know one of the challenges I’m sure you had was the fact that your daughter Katie is going through all of these treatments and you’re you feel like you’re at the hospital almost non-stop, but then you also have two other kids that you’re trying to raise.

So, how did you balance like still being a mom for your Katie’s older siblings and then so that and Jake and Becca are my stepchildren. So, Mark had to balance that and we talked about that and talked about the to the kids about it as well how um Chop encouraged us to be very honest. So, when Ky was going through the appendix that was huge. I mean that was really scary of how she would get through that surgery. And just recently her sister and I were talking about how scared she was that that was the time was the most scared because their dad had to tell them very clearly this is a possibility.

Um so I think I think that is a question for Mark. I can’t imagine it because I was so focused on Kate and so and that first year she was on the sofa so we read all the time and we would watch movies and try to do um cooking or crafting when you were feeling up for it. Yeah. And in the hospital, we were a team. Like the three of us, we were a team, you know. We did things. We played. We played cards. We did things to make Katie laugh. You know, that’s what our goal. Yeah. So, and so Katie, for you, what was um what was maybe some of the most meaningful things that your mom did for you to support you through this process?

I mean, I I’m sure just sitting on the couch and reading was part of it and just being present, but are there some little things that you remember that’s like, yeah, I just always remember my mom doing this and it really meant a lot. There’s so much. Yes, reading was a big thing. I think that once when you’re undergoing treatment, you realize like the things that might seem small outside of treatment become really big and really important. So, the things like reading or I would vlog all the time and I would video us together and that was super fun. Um, and I I think the biggest thing was making the port shirt for me to make my treatment easier.

Oh, true. I think that that was the biggest just because it was something that made me more comfortable and feel like I could have privacy. And then also we would come up with designs together. It became it became kind of a thing we did together as something to look forward to and something that still made me feel like myself that I could wear that you were more than the treatment that you’re more than the disease. Yes. Um so let’s talk about that. I I think this is a good segue. So what describe well first of all because there may be people listening that don’t understand what a port is or understand why the design that you came up with for the t-shirt is important.

So just describe in as much detail what you were going through that triggered this idea and then how you designed the t-shirt to accommodate the port and other things that you were going through from a clinical treatment standpoint. Yes. So just to give quick description of the port and what it is, um it’s a device in the chest. It’s like surgically implanted into your chest. It lives under your skin and it allows nurses um to administer treatment, do blood work and fluids because it allows for long-term vein access. And it’s a lot safer than doing IVs in your arm a lot of the time because the veins in your arm are smaller and can get damaged by the chemotherapy.

And since the vein near your heart is much bigger and there’s more blood flow, the as the treatment goes into your body, it’s diluted so it doesn’t hurt the veins. And so that’s why the port is so important to have because I was going through such harsh chemotherapy. Um, but yeah, you can explain how you can. So that very first day, Katie’s this little eight-year-old girl and we didn’t know what to expect. So, we send her in a Snoopy shirt or something and she has the shirt all the way up to here and she’s they’re trying to access support and they can’t get it easily and I always say as a parent you just feel so helpless.

There’s only so you’re relying on other people’s expertise to help your child. But I knew that I could do this one. Uh so I went home and took an old soccer shirt of Katie’s and just cut an opening over the port area and used Velcro. And the interesting thing was way back then at shop, they hadn’t seen anything like that before. Yeah. Kate went in, they could open the the port, they accessed it, closed it, and then all of the tubes could hang all day so they didn’t have to be touched again until she left. And so we would when we first started it, Katie loves Snoopy and she loved animals.

So we would get a Halloween Snoopy shirt and a make another one into a port shirt. Mhm. And then over time we refined it to plastic snaps cuz the Velcro was kind of stiff and uncomfortable. But we wanted something she could wear into a diagnostic test and the plastic snaps uh allowed for that and it did become a point of doing it together. You know what designs and as she became older we used words. You remember that period? Yeah. So we went through different um ideas with it but u it did make a difference and I think the goal for me was often you are not this disease you are not this treatment you are still you you’re still the little girl who loves Snoopy and dogs and yes well there I mean it’s such an invasion of privacy and everything that you’re going through is like such an invasion of privacy and you just feel like you’re getting poked and prodded and people are seeing everything and there’s strangers and you get to know your nurse nurses and doctors, but still it always feels like there’s somebody new coming into the room and who’s this person and I’ now here you are like you’ve got your shirt up and so I I love the idea.

Um and it it was really smart like you mentioned making sure that she could still wear it going through diagnostic imaging like a CT or an MRI where if you’d had metal snap she wouldn’t have been able to do that. Um, and so I’m sure you probably kind of learned and the design evolved over time to kind of make it fit different situations. Is there one shirt in particular that you remember that kind of stands out as your favorite? I always think of there’s this one I loved Snoopy like so much. And so there was like a green St. Patrick’s Day [clears throat] Snoopy shirt that always sticks out in my mind.

That one. And then we had a gray surfer shirt. That was a good That was one of our like first kind of prototypes and that one was really great as well. Yeah, I love that one. Well, I love and I love that you uh mentioned that this kind of it brought a little bit of joy to the process and some creativity and it was something you and your mom could do together. It makes me think a little bit like at the Proton Center, a lot of the pediatric patients have to have uh facial masks. So, it’s these wax composite masks that mold around their face and it keeps them still during treatment.

And we have an artist that will paint uh Disney characters or Marvel characters or really anything that the kid wants on the mask. Um and so when they come in, we say, “Okay, well, you’re going to have to get this mask. It’s going to be uncomfortable, but let’s have a little fun with it. Do you want to be Elsa? Do you want to be a T-Rex? Do you want to be Spider-Man or whatever it is? ” And this artist is incredible. She does an amazing job at that looks like a T-Rex or looks like Elsa. So, um that’s really neat. So when when um so you you finish up treatment um and when did you kind of think like maybe this is something we should continue doing the courage te’s like this isn’t just for me going through my treatment maybe we can help other people with this I think we had that idea from the beginning but um you know I had a design patent on it we have a different style for infants and toddlers ers we have even back then we had a design for families because we wanted to you know people always want to support we wanted to show support but I let it go I think it’s a combination right yeah I think it was just it just I mean you sort of move on from treatment and in some sense you want your life to move on and I think that it kind of did and we I mean like I was in school and you worked and we just kind of like let life continue moving and it was always something we still talked about though, always in the back of the mind as something we wanted to do.

But I feel like it wasn’t until I came to USC and I started meeting entrepreneurs here that I was kind of like, oo, this is something we can do. This is something that we have the capability to do and we have the resources around us to get started. Um, and this is just a great opportunity to start working on it and actually like make this happen. So, just in the last couple years, uh, this is something that you’ve really started to grow and and just talk about, um, how you’ve been doing that. So, like where do you get your t-shirts from? How have you been making people aware of the fact that this product is available?

Yeah, I I think the other part of it is you’re being in school with your friends and your roommates. So, our designs, Katie, one of Katie’s roommates is an artist and she has done our designs and another roommate did our logo. Yes. So, it’s just been this extraordinary collaboration. Really, we’ve based it mainly in LA right now. That’s where producing them, but we also have a couple of opportunities with East Coast Manufacturers. Yes. Originally, it was in New York when I started it when I when you were little. Yeah. But mostly in Los Angeles. And we’ve been talking directly to a lot of hospitals and organizations about buying the shirts from us and having donors buy the shirts for their hospital.

That would be our ultimate goal. Um to have like kids and also adults because we know that in a lot of adult hospitals there’s a little less emphasis on joy. I think in pediatric hospitals they really really try to make it as joyful for kids and you lose some of that as you get older. Um so we’ve also made adult shirts and the goal would be that everyone once they start treatment gets a shirt immediately and is able to have one. That’s the goal. Um but we’ve also been doing some social media and reaching out to people and we had a news feature. Um that’s been a lot of the way that we’ve kind of been trying to connect.

Um because it’s also just a great thing like you mentioned, we are currently developing companion shirts for friends and family members to wear in support of their loved one and also to just have a thank you for caregivers and all that they do um for people undergoing treatment. So, um, now I immediately forgot where I was going with that point, but well, let’s say, so let’s say, so, uh, let me ask this, Katie. So, let’s say there’s somebody in because I’m in Oklahoma City. Let’s say somebody listens to this podcast and says, “Well, I’d like a a courage tea. ” How, how would they go about getting one?

Yeah, go to our website, couragees. com. Um, and you can order one there. We’re currently actually reworking our website. The new one will be up in the next few days, but the old one still works. So, yeah, you could go purchase one. We have two adult designs. I’m wearing one now. And Oh, nice. Yeah, I love it. Yeah. And we also we have four kids designs as well. Okay. And uh and so then you guys can I guess there’s a shipping process and they can get it shipped out locally wherever they’re at. Wow. And and um so you’re you’re about to graduate and you said that this is something that you want to maybe do full-time when you graduate or that’s the hope.

Yes. Yeah. That’s amazing. And um I guess one of the things that that came to mind is, you know, you talked about moving on from thinking about cancer, but now it’s kind of back in your face all the time. How have you processed that or how talk a little bit about that? I mean because there’s this survivorship element once you go through cancer treatment that is like it or not that is kind of always part of who you are, right? That’s always part of your story. Um and it it can be really hard to talk about sometimes. Maybe there’s times where it’s a little bit easier to talk about.

It’s rewarding to talk about. It can be discouraging to talk about. How have you just kind of personally managed getting back in this whole world of oncology and pediatric cancer? Yes, that’s a that’s a great question. Um, I think at first when I finished treatment, I didn’t want to have anything to do with the identity for years, probably until college. I didn’t want to talk about it. I didn’t want anyone to even know that that was part of who I was. I didn’t want to deal with it. I didn’t want to think about it. Um, and having to now talk about it more has really honestly been a very healing experience.

Um, I think working on this business itself has been very healing and it’s allowed me to not only accept that that is a huge part of my identity, but really want to be able to take that aspect of my identity and do something with it. um do something like for the world, for other people, with other people. I think one of the biggest things that I’ve loved is like meeting people who’ve had similar experiences to me and developing a sense of community. That’s been so important and I don’t even think that it was something I realized I needed until I started talking about it. But a lot of new emotions have definitely come up.

Like I think about a month or two months ago I went to a survivorship appointment and I started crying when I got my blood work done and I just that had never happened to me before but I was super super nervous to get my blood work done which I’ I’ve done it a million times. Um so it was kind of weird that I felt that way but I think it’s also I’ve been realizing more and more like wo this is a huge thing that happened to me. Even sometimes I’ll like say something or write down the word survivor or like cancer survivor and I’m like whoa that that’s me.

That’s crazy that that’s a part of my identity. And so I think becoming accustomed with that has honestly been a really great experience and I’m allowing myself to feel more emotions about it and also talk to more people who understand it which has been super comforting and yeah it’s a lot. It’s difficult but I it’s been great. Yeah. And is it I mean Casey for you has there been kind of again now you’re probably reliving some of those memories that maybe part of you wanted to put in the past. How has it been for you as an adult of a survivor or a parent of a survivor?

Um, I think as a parent, as anyone would say, I’m just so grateful every single day, just to be have this opportunity to be with her and that she’s here. Uh, that that never changes. And it does. I mean, I’m not as crazy as I used to be when she has a cold, you know, I’ve gotten better about that, but it’s always there. So when Katie went to this survivorship appointment and I wasn’t with her or they we went back for some testing just which they do on cardiology um that brought so many things right back you know I felt like I was right back there again and then the talking together has been wonderful but at the same time to hear some of the things that Katie felt at the time and through the later um that I didn’t realize were just still heartbreaking.

Kate recently blogged that she hasn’t put out there yet, but it was heart-wrenching to think of what you’ve gone through and how you felt. So, um, well, and and you guys, you mentioned the vlog. You guys do have a YouTube channel, too, where you’re talking a little bit about Courage Tease and your experience. So, maybe mention that as well. True. Yes. Yes. Um, we’ve released two videos on the YouTube channel just kind of talking through our experience from diagnosis to being in the hospital four days a week. And the next episodes we plan to talk about a little bit life after cancer as well and what’s that what that has been like for us.

And all of this is just in hopes of kind of as you mentioned like someone who’s going through it now can have a little bit of perspective or ex have something where they can relate to us maybe a little bit more so they don’t feel so alone or so they feel like they in some ways know what’s coming even though it’s kind of impossible to really ever be ready for it, right? Or to have someone to talk with. We I did an event at back at CHOP. Someone had Michael’s way organization had purchased shirts and we were giving them out to children at CHOP for their funfest day.

Michael’s way does his funfest and I had the opportunity to talk to parents and as much as I walk into CHOP still with this kind of feeling just to be able to talk to parents and offer and talk it through things that they are going through now. I was so happy to be have that experience and to have things useful things to help them with or or just felt they had someone to talk with about this and that’s part of we’re very much about [clears throat] community and that’s what we’re really hoping to build as time goes on through um courage tease is in addition to providing something that gives you ease and comfort and some joy but we want to build up that community as well.

That’s amazing. Well, thank you guys. so much for your time today. I do I love what you guys are doing and the two of you together are beautiful. Um it’s been really a pleasure to talk to you guys. So I do I want to finish with this question because you talk about you you’ve sort of touched on this a little bit but you talk about on your website the importance of little moments. Um and so maybe just expound on that. Why why did you feel like it was important to put that on your website and what what is the importance of little moments? Do do you want to take I can um we were again so fortunate with how many people around us in our community, family and friends supporting us.

So we the little moments that we did for each other or that we as parents and family did for Katie. We make a list of that just to give people some ideas of you don’t know what to do on that day when they’re on the sofa all day long. Here are some things that we did. But we’ve also included things that friends and family and community did for us that were just beautiful and just reminded us that they were with us, too. So Katie gets out that app appendix. She gets out on Halloween and she is determined. She’s going trick-or-treating and we’re, you know, Mark and I are thinking, okay, maybe one block, you know.

Well, she’s out for hours. She runs into everyone she knows. And when we came home that night, they someone had had u a fall community event and they painted little pumpkins for us and they were all over the lawn and up the stairs and on the porch and it was just this just we’re in the middle of the appendix and to come home and see something like that was amazing. And people did the the walking our dog um bringing us food. We looked forward to that. We looked forward to what people would bring. Um [snorts and clears throat] there were just so many things. There’s so many kindnesses.

Yeah. The purple ribbons all over town. Definitely was lovely. Giving people um something to do for their loved one going through treatment when you often feel helpless and you don’t know what to do. Everybody wants to be helpful. Yeah. And like this just they’re so important. All of those any way to bring joy is so important and I think that’s why we wanted to include that. Yeah. Yeah. It’s and that’s a it’s a question a lot of times friends or family or caregivers will ask is what can I do? And it sounds like what you’re saying it doesn’t have to be this big grandiose gesture.

Sometimes it’s just something little and it’s just that evidence that you’re thinking about that person and it like it’s as simple as uh like you said putting pumpkins out or putting purple ribbons out. Um that’s amazing. And then and and now here you are years later and that’s what you remember. Yes. Oh, so many so many granola bars with positive sayings on them and yeah, you always remember I feel like the people that supported you and the things that they did which is so lovely. And you don’t even know who they are. No, I mean there’s so many people supporting us that we didn’t even know, you know, that we would hear about later.

Uh yeah, just there’s a Yeah, extraordinary. They’re just the extraordinary how kind to people are. Well, thank you guys so much. You guys are amazing. I can’t wait to tell everybody about Courage Tees. Um and we’ll get you guys connected and we it sounds like we need to do an event at some point here in Oklahoma City and we’ll buy a hundred TE’s and get them all handed out and that would be awesome. We would love that. But again, thank you guys so much for your time today. Oh, thank you. It’s really been a pleasure. Thanks for having us. Yes, we’re so we’re so happy to be able to be here and talk about our experience.

The Cancer Project podcast is made possible by the Oklahoma Proton Center, a state-of-the-art cancer center where precision and treatment meets real compassion in care. We’re grateful for their support and for you for spending this time with us. If you’d like to learn more about the Oklahoma Proton Center, you can visit their website at the link below. And if something you heard today resonated, we’d love for you to stick with us. You can subscribe to the podcast and follow along on our socials linked below for more conversations like this. Honest stories, thoughtful perspectives, and the kind of support people don’t always know where to find, but do truly need.

At the end of the day, this podcast isn’t just about cancer. It’s about what it means to be human inside of it, and how we keep living, connecting, and moving forward together. We hope you leave each episode feeling a little bit more informed, a little bit more supported, and a lot less alone.