Transcript generated from the episode’s audio. Speaker names are identified from the context of the conversation rather than from recorded speaker data, and automatic transcription may misspell names and terminology. Please refer to the video for the authoritative version.

David Raubach: 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 Katie and Casey VanArnam. Katie is a cancer survivor. She was diagnosed with lymphoma at a young age. And she’s going to talk a little bit about that experience. And then through that experience, she identified a very specific need and has created an amazing platform and service for other pediatric patients called Courage Tees. 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 or you have a child going through pediatric cancer treatment. But we also want to make our listeners aware of this amazing resource with Courage Tees. So Katie and Casey, thank you guys so much for taking the time to join us today.

Katie VanArnam: Yes. Thank you for having us.

Casey VanArnam: Thanks for having us. We’re so happy to be here.

David Raubach: And so you guys are located in New Jersey right now.

Katie VanArnam: So currently in Los Angeles. My mom’s helping

David Raubach: Oh, you’re in Los Angeles. Okay.

Katie VanArnam: She’s helping with the move, but we’re, you’re in New Jersey.

Casey VanArnam: I live in New Jersey, and that’s where Katie grew up, but now she’s in college, so she’s out here.

David Raubach: Okay. Los Angeles. And so, Katie, tell us just about your college life. Where are you going to school? What are you studying?

Katie VanArnam: Yes, I’m at 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.

David Raubach: 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.

Katie VanArnam: 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.

David Raubach: Yeah, that’s great. So, Casey, how has it been for you having Katie across the country?

Casey VanArnam: Oh, I miss her so much.

David Raubach: Right.

Casey VanArnam: But I’m so excited for her. I’m just so happy that she’s living this incredible life.

Katie VanArnam: Just Yeah.

David Raubach: Yeah. And then so Katie, tell me, do you have siblings? Tell me a little bit about your your extended family.

Katie VanArnam: Yes, I have an older sister and brother. My sister is actually in Davis, California, getting her PhD in environmental education.

Casey VanArnam: Becca.

David Raubach: Becca.

Katie VanArnam: Yes.

David Raubach: Okay.

Katie VanArnam: And my brother Jake, he’s in New Jersey, a close to where we grew up and he’s in accounting.

David Raubach: Okay. I had a sister that lived in Davis, for a period of time. She was at Travis Air Force Base. Okay. There. So, she was a nurse in the Air Force. And so she actually lived in Davis at the time.

Katie VanArnam: Wow.

David Raubach: So I am familiar with Davis. Yeah, Davis is lovely. Have you visited Davis, Katie?

Katie VanArnam: 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.

David Raubach: 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?

Katie VanArnam: 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, coming here, which has been just the best experience.

David Raubach: Yeah, that’s great. And what, so you’re studying journalism and entrepreneurship, and I do have Spanish in my notes too. Is that, are you still working on your Spanish?

Katie VanArnam: Yes. I’m not, like it’s not included in my curriculum anymore.

David Raubach: Okay.

Katie VanArnam: I’m trying. I’m trying to learn. That’s still a goal of mine.

David Raubach: Yes. Yeah. Yeah. Well, it’s interesting because there’s a difference between like, you know, classroom Spanish and conversational Spanish and you are in a good spot to really get conversational Spanish down really well.

Katie VanArnam: Exactly. Yes. I’m trying. I’ve been

David Raubach: You’re practicing, right?

Katie VanArnam: I’ve been practicing, but 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.

David Raubach: 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 she like?

Katie VanArnam: She’s just the best. I don’t know. Like she’s, I’m just so grateful to have her and have our relationship. I always feel like my mom’s super there for me. 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. 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. 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.

David Raubach: Yeah. Yeah. That’s amazing. Do you agree with that, Casey?

Casey VanArnam: Yes, I do think that I am pretty joyful. Just find, I just find the smallest things wondrous and

David Raubach: Yeah, that’s amazing. Well, and so now your turn, Casey. You tell us about Katie. How would you describe Katie?

Casey VanArnam: My gosh, she’s just extraordinary. Just an extraordinary person. And 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. I love that about you, how you really just, you can talk to anybody and really sees the person.

Katie VanArnam: Yeah.

Casey VanArnam: You’re really present with that. 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?

Katie VanArnam: Pitch contest.

Casey VanArnam: So, just really put so much effort into that and you’ve made such great friends and you are such a great friend.

Katie VanArnam: Thank you.

David Raubach: Well, that’s beautiful. 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. And you won that pitch, right?

Katie VanArnam: I did. Yes.

David Raubach: So, tell tell us about that. What was, tell us about that pitch.

Katie VanArnam: Yeah. So, it was a competition through USC, 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. It’s like you basically go through different rounds of judges and you pitch your business idea, any progress that you have, your financial goals, to judges, and then each round you move through until you get to the final round. 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. 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 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 Tees further and really give us the resources to succeed and keep moving.

David Raubach: What did you learn about yourself through that process? Because that sounds like a pretty intense process.

Katie VanArnam: 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. 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. 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. 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.

David Raubach: Mhm.

Katie VanArnam: 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.

David Raubach: Did you end up meeting people through that process that had gone through a pediatric cancer?

Katie VanArnam: I had, well, I actually had. So I ended up going to different events that I had learned about through that experience, where I met people my age who had gone through pediatric cancer. I also met people who had kids undergoing treatment or had just finished treatment or family members.

David Raubach: So let’s, if you don’t mind, go back and talk a little bit about the cancer experience. And so I’ll let you kind of go and talk about what you remember, and then Casey, would love to get your perspective as well. I mean, I know that this was something that happened, starting back in, before third grade. And so just take us back to kind of the beginning and what happened with the diagnosis and treatment.

Katie VanArnam: Yes. Yeah. And feel free to fill in anything I miss. But it took eight months to get the final diagnosis. 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. 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.

David Raubach: Yeah.

Casey VanArnam: And that was, a lot of it was because Katie’s blood work was always fine. So they couldn’t find anything else and the, yes.

David Raubach: Yeah. And so you’re, and so you’re what, eight, eight years old?

Katie VanArnam: Eight. Yeah. About it, this time.

Casey VanArnam: Well, the second half of second grade is when we were trying to get her figure out what’s wrong.

David Raubach: 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?

Katie VanArnam: 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.” I 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 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, my parents have been divorced since I was five. So them being together in the living room sitting down, you know, something’s wrong.

David Raubach: Yeah, that right.

Katie VanArnam: 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?”

Casey VanArnam: But your first question was, “Am I going to die?”

Katie VanArnam: Yeah.

Casey VanArnam: You’re at that age. You knew.

Katie VanArnam: 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.

Casey VanArnam: The great thing was that you really listened to us. So 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.

Katie VanArnam: Yeah. I’m very thankful for that.

David Raubach: 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?

Casey VanArnam: 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, 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 Cape 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.

Casey VanArnam: 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.”

David Raubach: Oh, wow.

Casey VanArnam: Still not, you know, now I know what that means, but at the time, not expecting anything.

David Raubach: Yeah, man. So, at the, when they called you, 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?

Casey VanArnam: They were still typing it up 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. 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 ruled out 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. So that part was tough.

David Raubach: 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 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?

Casey VanArnam: Right. I was persistent in that eight. 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, you know, everybody says this, but you have to be the advocate. 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.

David Raubach: So you get the diagnosis, and then I guess you go meet with an oncologist, and the oncologist is like, “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?

Casey VanArnam: It was super hard treatment for the first six weeks I think, right, and 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, 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.

Katie VanArnam: So for third grade, I was in the hospital probably four days a week for like six to seven 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.

Casey VanArnam: 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 appendectomy.

David Raubach: Yes. So, oh, related to the treatment or completely independent of that?

Casey VanArnam: I don’t know. I would say independent, right? Hard to know.

David Raubach: Yeah. Hard to know.

Katie VanArnam: But that did it.

David Raubach: 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.

Casey VanArnam: It was all chemo.

David Raubach: Yeah. And it’s the, the diagnosis was, because I don’t think we’ve touched on this yet. It was lymphoma.

Casey VanArnam: Non-Hodgkin’s lymphoma.

David Raubach: Non, is that correct?

Casey VanArnam: Yeah. B-cell non-Hodgkin’s lymphoma.

David Raubach: Non-Hodgkin’s lymphoma. Okay. And 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-Hodgkin’s 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?

Casey VanArnam: It is a more common diagnosis as far as lymphoma goes. We were fortunate we were at CHOP, Children’s Hospital of Philadelphia.

David Raubach: One of the leading centers.

Casey VanArnam: 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.

David Raubach: Yes. Yeah. And so you, how far of a a commute was that from where you were living.

Casey VanArnam: We’re so fortunate. We were right over the bridge.

David Raubach: Yeah.

Casey VanArnam: So from Philadelphia, we always talk about right over the bridge, but 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 we

David Raubach: So just lots of lab work.

Casey VanArnam: Yeah. Yes. Lots of

David Raubach: 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, but then hard course, not quite as hard, but so what was that whole process start to finish? How long was that?

Katie VanArnam: Two years.

David Raubach: Mhm. Okay. Wow.

Katie VanArnam: The second year I was able to go back to school but I would miss a week every month to get a spinal tap.

Casey VanArnam: 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 as part of treatment. Not every time, but Katie had a reaction to it. She would develop this excruciating spinal headache.

David Raubach: Yeah.

Casey VanArnam: 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.

David Raubach: 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

Katie VanArnam: Yeah.

David Raubach: And what, 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?

Katie VanArnam: 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? 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. 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. 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 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.

David Raubach: Yeah. That age.

Katie VanArnam: 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. I would have to get shots in my leg at home 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.

Casey VanArnam: Clay.

Katie VanArnam: Clay. You and dad would always make clay in

David Raubach: Yeah. Yeah.

Katie VanArnam: 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. 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.

David Raubach: No, that I mean I loved what you said. And Casey, for you, 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

Casey VanArnam: Then, Jake and Becca are my stepchildren. So, Mark had to balance that and we talked about that and talked to the kids about it as well, how CHOP encouraged us to be very honest. So, when Katie 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. 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 cooking or crafting when you were feeling up for it.

Katie VanArnam: 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.

David Raubach: Yeah. So, and so Katie, for you, what was, what was maybe some of the most meaningful things that your mom did for you to support you through this process? I mean, 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.

Katie VanArnam: 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. And I I think the biggest thing was making the port shirt for me to make my treatment easier.

Casey VanArnam: Oh, true.

Katie VanArnam: 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, that you were more than the treatment, that you’re more than the disease.

Casey VanArnam: Yes.

David Raubach: 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.

Katie VanArnam: Yes. So just to give quick description of the port and what it is, it’s a device in the chest. It’s like surgically implanted into your chest. It lives under your skin and it allows nurses 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.

Casey VanArnam: 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. So I went home and took an old soccer shirt of Katie’s and just cut an opening over the the port area and used Velcro. And the interesting thing was way back then at CHOP, they hadn’t seen anything like that before.

David Raubach: Yeah.

Casey VanArnam: 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 make another one into a port shirt.

David Raubach: Mhm.

Casey VanArnam: 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 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. Do you remember that period?

Katie VanArnam: Yeah.

Casey VanArnam: So we went through different ideas with it, but 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.

Katie VanArnam: 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 nurses and doctors, but still it always feels like there’s somebody new coming into the room and who’s this person, and now here you are, like you’ve got your shirt up.

David Raubach: And so I I love the idea. 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. 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?

Katie VanArnam: 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 Snoopy shirt that always sticks out in my mind. That one.

Casey VanArnam: 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.

Katie VanArnam: Yeah, I love that one.

David Raubach: Well, I love and I love that you 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 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 Disney characters or Marvel characters or really anything that the kid wants on the mask. 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.

Casey VanArnam: So, that’s really neat.

David Raubach: So when, so you finish up treatment, and when did you kind of think like maybe this is something we should continue doing, the Courage Tees, like this isn’t just for me going through my treatment, maybe we can help other people with this?

Katie VanArnam: I think we had that idea from the beginning but

Casey VanArnam: You know, I had a design patent on it. We have a different style for infants and toddlers. 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.

Katie VanArnam: I think it’s a combination, right, yeah, I think it was 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 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. And this is just a great opportunity to start working on it and actually like make this happen.

David Raubach: So, just in the last couple years, this is something that you’ve really started to grow and and talk about, 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?

Katie VanArnam: Yeah, I I think the other part of it is you’re being in school with your friends and your roommates. So, our designs,

Casey VanArnam: Katie, one of Katie’s roommates is an artist and she has done our designs, and another roommate did our logo.

Katie VanArnam: 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.

Casey VanArnam: Originally, it was in New York when I started it, when you were little.

Katie VanArnam: 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. 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. 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. But we’ve also been doing some social media and reaching out to people and we had a news feature. That’s been a lot of the way that we’ve kind of been trying to connect. 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 for people undergoing treatment. So, now I immediately forgot where I was going with that point, but well

David Raubach: Let’s say, so let’s say, so, let me ask this, Katie. So, let’s say there’s somebody, because I’m in Oklahoma City, let’s say somebody listens to this podcast and says, “Well, I’d like a Courage Tee.” How, how would they go about getting one?

Katie VanArnam: Yeah, go to our website, couragetees.com. 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.

David Raubach: Oh, nice. Yeah, I love it.

Katie VanArnam: Yeah. And we also, we have four kids designs as well.

David Raubach: Okay. 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 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.

Katie VanArnam: Yes.

David Raubach: Yeah. That’s amazing. And 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. 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?

Katie VanArnam: Yes, that’s a great question. 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. And having to now talk about it more has really honestly been a very healing experience. 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, 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’ve done it a million times. 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, whoa, 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 it’s been great.

David Raubach: 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?

Casey VanArnam: 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. 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, 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 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.

David Raubach: So, 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 Tees and your experience. So, maybe mention that as well.

Katie VanArnam: True. Yes. Yes. 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 that has been like for us. And all of this is just in hopes of, as you mentioned, like someone who’s going through it now can have a little bit of perspective or, 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.

Casey VanArnam: 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 that they felt they had someone to talk with about this. And that’s part of, we’re very much about community, and that’s what we’re really hoping to build as time goes on through Courage Tees, 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.

David Raubach: 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. 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’ve sort of touched on this a little bit, but you talk about on your website the importance of little moments. 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

Casey VanArnam: I can. 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 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 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, 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, bringing us food. We looked forward to that. We looked forward to what people would bring. There were just so many things. There’s so many kindnesses.

David Raubach: Yeah. The purple ribbons all over town.

Katie VanArnam: Definitely was lovely.

Casey VanArnam: Giving people 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.

Katie VanArnam: 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.

David Raubach: 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, like you said, putting pumpkins out or putting purple ribbons out. That’s amazing. And then, and now here you are years later, and that’s what you remember.

Katie VanArnam: Yes.

Casey VanArnam: 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.

Katie VanArnam: No, I mean there’s so many people supporting us that we didn’t even know, you know, that we would hear about later.

David Raubach: Yeah, extraordinary.

Casey VanArnam: They’re just, the extraordinary how kind to people are.

David Raubach: Well, thank you guys so much. You guys are amazing. I can’t wait to tell everybody about Courage Tees. 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 Tees and get them all handed out, and that would be awesome.

Katie VanArnam: We would love that.

David Raubach: But again, thank you guys so much for your time today.

Katie VanArnam: Oh, thank you. It’s really been a pleasure. Thanks for having us.

Casey VanArnam: Yes, we’re so, we’re so happy to be able to be here and talk about our experience.

David Raubach: 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.