A Family Comes Together to Support Adolescents and Young Adults with Cancer - Season 2, Episode 1

Learn from a sibling's perspective, that of Nick Giallourakis, about the cancer diagnosis of his brother Steven at age 15.   The family came together and established the Steven G. Cancer Foundation to raise money for cancer research. Nick now serves as Executive Director of Elephants and Tea,  a media company designed to build awareness of and help adolescents and young adults with cancer.  Now, 16 years later, Steven has survived four cancer diagnoses...and the family continues to work together to help teens and young adults with cancer.

Listen to the Don't Give Up on Testicular Cancer podcast from the Max Mallory Foundation.  

Transcript

Nick Giallourakis: A Family Comes Together to Support Adolescents and Young Adults with Cancer 

JOYCE LOFSTROM 

This is the Max Mallory Foundation podcast, “Don't Give Up on Testicular Cancer.” This podcast is brought to you in honor and memory of Max Mallory, who died in 2016 at age 22 from testicular cancer. I'm your host, Joyce Lofstrom. And for this episode, I want to provide a little bit of background before we get to our guest. 

On September 24th of 2021, our podcast finished its first year of operation. In that first year, we presented 27 different episodes. I just want to mention this; it's a milestone for us as the foundation for Max Mallory. Our foundation is me as his mother, Chuck Mallory as his father, and John Mallory as his brother. The three of us came together to create the foundation about, oh, I'd say three or four years ago. 

The point is: it's just I wanted to mark a year of our podcast and we've talked with survivors, caregivers, researchers. It's been a very interesting experience for me as the host just to learn so much about what survivors go through, and also the need for services once they do survive, and services to help them have a wonderful life. 

And maybe that's some of you hopefully listening to the podcast I'm recording this in early November, and so it's Movember. If you're familiar with this month, it's a global effort to provide more information, raise money for mental health for men, cancer survivors, but mental health in general for men. 

Also, for prostate cancer and testicular cancer with the underlying theme that men face these health issues and need to be equipped to talk about them and know about them and know what to do, symptoms appear and also be comfortable seeking mental health help when they need it. 

I wanted to mention Movember, and that's M-O-V-E-M-B-E-R dot com. I was looking at it this morning before the podcast, and I'm in the U.S., so it was U.S. dot Movember dot com. I'm sure if you just type in the word, you can find it. It’s also kind of fun because it's the month where men decide to grow a mustache, grow a beard, some kind of visual look, honoring this month. 

So I just wanted to mention these different things. I wanted to highlight that we have now entered into our second year of the podcast and if you're listening and have any ideas, please don't hesitate to send them to me. You can find contact information on our Max Mallory Foundation website, and I will now just go on and you'll hear the introduction of our guest today. 

Hi, this is Joyce, and with me today is Nick Giallourakis, and Nick is the Executive Director of the Stephen G. Cancer Foundation. He also oversees Elephants and Tea, which is a nonprofit media company. And it's a brand dedicated to young adults with cancer and the cancer community. It was created by Angie and Nick Giallourakis, who are Nick's parents. And Stephen is one of Nick's brothers and a four-time cancer survivor. I know Nick will share more about that story and more about what they're doing to help young adults with cancer. 

So Nick, I'm so glad you could join me today. 

NICK GIALLOURAKIS 

Yeah, thanks Joyce for having me. Honored to be here. 

JOYCE 

Well, tell us a little bit about your foundation, your family and your brother's cancer. 

NICK 

Sure, absolutely. So we'll have to take a trip down memory lane a bit. Steve's a four-time cancer survivor. His initial cancer was 16 years ago now: stage 4 osteosarcoma when he was 15 years old, and in his L4 vertebrae of his spine. So a lot of treatment, a lot of surgeries, a lot of craziness going on there. And he beat that in about a year and a half, and then two years later was diagnosed with secondary AML due to the chemotherapy treatments from his first cancer. And that's something that, while it's not common, it's more common in this age range that we call AYA, Adolescent and Young Adult. And so that is one of the main reasons why my mom specifically, and my dad too, but more so my mom, really wanted to focus on creating a research fund, if you will, for the AYA space. And that's actually how the foundation started originally 12 years ago. 

And the whole mindset there was to raise funds for cancer research directly at Case Comprehensive Cancer Center. Since then, we've morphed into a much larger organization. We're based in Cleveland, Ohio, and we were more regionally focused, like most family foundations at the start. And then three years ago, we launched Elephants and Tea. And the name Cancer is the elephant in the room that no one wants to talk about, and tea is a really big conversation it can provide. Recognizing that what Steve was going through as a survivor for 11 years, you know, quote unquote, cancer free, no cancer. And he wasn't done with the side effects, wasn't done with the emotional side of things, too, that were coming with it that: you know, you never really anticipate. And to a certain extent, rightfully so, right? The whole mindset when you're diagnosed with cancer is beating cancer and being cancer-free. So as a family, and specifically as a caregiver, but with my mom seeing firsthand, as she dove headfirst into this community, that there was a need for creating some sort of space for, quote unquote, survivors, whether you're still in treatment or out of treatment, to come together and share your stories and experiences. And that's where Elephants in Tea was born out of that, that whole mindset there. 

So our foundation is still honoring what we do from a research fund standpoint; we have two arms, essentially. One is still focusing on research funding and the other arm is a community and survivorship piece, which is where Elephants and Tea comes into play.  And the combination of the two is really kind of a beautiful combination of focusing and understanding that in order to battle cancer, we need more research. There needs to be more funding. At the same time, we still need to help and focus on those that are either in treatment or out of treatment that might need some more social support. And so that's where Elephants and Tea and everything that comes with that has come into play.  It's been a really impactful combination of the two focusing on those and something that you don't necessarily see a lot of specifically in the adolescent young adult space. 

JOYCE 

I love what you do at Elephants and Tea. I love the magazine, the print magazine, the online stories. You really have done an outstanding job with that. Can you tell us how Steve is doing before we get into more about your foundation? 

NICK 

Yeah, sure. So Steve's doing really well. He was diagnosed with two new cancers in 2019. One was a secondary, one was a primary. Caught those pretty early on, thankfully.  So surgery to remove those two, and [there] hasn't has been, you know, any evidence of disease since then, thankfully, knock on wood. And he's doing great. He's got a full-time job, gonna walk at commencement here in a couple of weeks, actually get his bachelor's degree finally. So he's super excited about that. And my parents are going to go to that. 

So, yeah, that was, you know, obviously something on his list to accomplish. He's 31 years old and you know, I’m pretty proud of him, that he's finally able to accomplish that. And so, yeah, he's doing great. And starting in 2022, he's going to be the president of our foundation's board, actually. 

JOYCE 

Oh, wonderful. 

NICK 

Yeah. So it was, it was, we knew it was coming. And he ultimately said, hey, my name's on the foundation. I might as well be a big part of it or as much as I possibly can. So, which, you know, I think is completely fair. So as awkward as it has to be, sometimes, to have your name on something like this. It's pretty cool that he and I will get to work more hand in hand, just as far as growing the foundation. 

JOYCE 

That's wonderful. I'm so glad to hear that. Can you tell us a little bit more about Elephants and Tea, just the media arm of your foundation? 

NICK  

Absolutely. So it's, it's pretty wild that I can't decide, Joyce, if it feels like it's going to be three years in December, since we've been in existence with Elephants and Tea, or if it is quick or long, right? Especially with the past year and a half, two years that we've had, but with Elephants and Tea, the whole idea when we launched this, as I said earlier, was to create a space for people to share their stories and experiences. Originally, we actually wanted to create it like other magazines with editorial, doing interviews, things like that. My background's in content marketing and digital media, so that was the whole idea behind this. So, there was no mistake in coming up with magazines and understanding that actually print has a place in this age group. Anyways, we actually did some focus groups and talked with survivors that we worked a lot with, and they actually shot us down with the original idea of having editorial and doing interviews. And they said to us, let us tell our own stories in our own words. So that's why Elephants and Tea is essentially first-person stories and experiences written by contributors. We have no editorial, really. We have Rachel Mihalko on our staff who joined us this summer Who is a wonderful copy editor, a wonderful writer herself. 

NICK 

So she's been able to take that to another level because I am not a copy editor by any means. But it's been fascinating to just see how this has just brought the community together to really just share their stories and experiences. And that's what it's all about,  what the mechanisms are that go into Elephants and Tea. We have quarterly print and digital magazine that comes out March, June, September, and December that's free to anyone that wants it, both the print and digital version. People can sign up right on our website at elephantsandtea.com. We also have our website, which I just mentioned, and we post three new stories a week, Monday, Wednesdays, and Fridays. 

NICK 

And it's been pretty remarkable. We do not lack content. We're usually scheduled two to three months in advance. We have broken the 200-contributor individual threshold. So, we have over 200 people that have written for us now across 10 countries, which I think is really cool that we're able to connect people across the globe essentially. But also at the same time, it's terrifying to a certain extent that there is such a need for this community. 

JOYCE 

Right. 

NICK 

And so I'm just, I'm flattered that we are able to help this community in this way. On top of that, we already were planning on doing more digital type events prior to COVID, since my background is actually in virtual events over 10 years ago. And so, the irony of COVID, we had to go virtual, like most folks, to connect with more people. Frankly, that was a blessing in disguise because we were able to connect with more people than we ever would have pre-COVID, with doing different happy hour events, [like] our new event called Perkatory that we do once a month. I guess it's not so new anymore, we've done 11 of them. Our 10th one is actually in October. And it's been remarkable to see the impact that these types of hangouts, get togethers we have had, one with the Perkatorys to actually allow people to read their stories that they wrote for Elephants in Tea. 

So you're adding tone to the words. And that can get really emotional. The other side of it is our happy hour groups that meet on Friday at 5:30, where it's meant to be really just a social gathering, not meant to be a support group by any means, but bring people together within the community to hang out for everyone that's facing cancer. We do get some caregivers as well, definitely mostly the 20- to 30-year-old range and some folks in their 40s, but it's become a community within a community. We get 15 to 25 people every week. And frankly, my wife and I, we had our daughter in February, 2020. So she's 20 months old. That group of people would be the only ones to actually see her grow from, you know, the day we brought her home, essentially. 

JOYCE 

Wow. 

NICK 

It was pretty emotional when you think about the year that we've had, but these people become very close friends, and I didn't know any of them prior to this happy hour. We were only going to do it through the summer of 2020, and it's going to be here as long as I'm here, that's for sure. But anyway, that's just a part of what we do, and we've been launching and growing writing workshops. We call it Healing Through Writing with AYA programs at hospitals now, too, to actually work with those groups and bringing those groups together, kind of from a narrative therapy side of things. We're fortunate to have a board member who is a childhood cancer survivor, a licensed social worker, and now has her certification in narrative therapy. And we were able to design a writing prompts workshop, essentially, to work with these different organizations that can't come together in person because of COVID still and run these awesome workshops that have been really powerful. We're also fortunate that we partnered up with another nonprofit called I'm Not Done Yet Foundation to really expand this going into 2022. 

So, as you can see, there's some other things as well, but those are the big things that we have going on with Elephants and Tea that we're just really seeing some cool impact and trying to bring the community, but specifically the AYA community together to focus on things. 

And I'm realizing also, I got to mention our big event called GabFest, where we partnered with our dear friends over at Cactus Cancer Society. We launched that last year and we had over 400 people register for that event and saw over a hundred people each night. 

NICK 

And the way that works is, it's a week of interactive crash courses and panels the first full week of December on a different theme that is focused specifically on the young adult community. And that's been so powerful and we're just so thrilled to be bringing that back here coming up in just over a month. I've already seen almost the same amount of registrants with a full month left to promote this thing. And it's cool to really bring in some new voices that you don't necessarily hear speak at these different conferences and come and give their side of things, as well as some professionals. And that GabFest has really been a really exciting, big connector for those facing cancer as young adults. 

JOYCE 

You know, I think what's so outstanding about what you do, Nick, is just that common thread for young adults, because I think the people I've talked to who are young adults with cancer, I mean, the common thread is, “well, I didn't know anybody.” I didn't know where to go to learn about, for me, testicular cancer. 

JOYCE 

But any kind of young adult with cancer, it's that connection with someone your own age that really helps. I think that's wonderful that you've got so many layers of things that you offer to people. And I love that idea, of narrative therapy. I've never heard of that. I think that's a wonderful thing to offer people. 

So congrats on doing all of that. I think the other thing, and you probably have a strong perspective on this, but when you have people write their own story--because I wrote for one of your [publications], I guess it's been almost three years ago or two years ago, but a “letter to cancer,” and I'm a writer too, and that story just poured out of me. I didn't even have to think about it. I just sat there, and you know what I mean? 

And I think so many cancer patients, of any age, but especially a young person, you know, you do have a perspective on what you're going through. And I bet, I know your stories are so, well, they're intuitive and they're just, you really get the emotion of where someone is. 

NICK 

Right. That's right, absolutely. And yeah, it has been that long, hasn't it, Joyce? Gosh, since you wrote for us. But yeah, it's what I always tell folks when they go to write for the first time for us is, don't be surprised if it takes a turn you weren't expecting. I think that a lot of folks that do write for us are not writers, necessarily, from a historic standpoint, or they've just never necessarily done it in certain settings. And so they're reflecting on emotions that either A, they've never reflected on before, or B, they haven't reflected on in a long time. 

So, I do agree that people don't have a problem putting words on paper. I sound very old there, but, I think a lot of folks do get surprised at the direction sometimes that their article takes, or their letter takes, which is really cool, but also reflective of it's important to reflect on those emotions at times. And that's where our narrative therapy workshop is really coming into play. 

JOYCE 

Right. So, I know the other question I had was about your mom and her yoga classes and her background in the bags that you take, what are they called? The Be Calm and Stay Strong Wellness Bags. Can you talk about that a little bit, the yoga and the bags, what you do? 

NICK 

Absolutely. So my mother is a yoga nidra meditation instructor. She's certified and she actually wanted to do this specifically for cancer patients originally. She, I believe, got her certification through yoga for cancer.com. I think that's where she got it from. But anyways, she’s certified to do yoga, but also her meditation courses, which have really taken off within the community, and have just been another way for people to reflect, right, and really understand that. You know, it's stressful, life is stressful. Adding cancer to it is a whole ‘nother level of stress, for goodness sake. 

JOYCE 

Right. 

NICK 

It's been important for her to help people in that aspect. And the fact, again, with COVID, this provided an opportunity for her to really showcase that for a lot of folks. And she had another class this past Sunday night. You know, she mentioned to me, well, there are only seven people on, you had seven people in seven different States, which I think is just really cool. As far as the Be Calm Stay Strong wellness bags, that's something that my mom also started and is really cool to see. And we give those for free out to patients that are stuck in the hospital for a long period of time. We started that with the hospitals here in Cleveland, university hospitals in the Cleveland Clinic. And it's just expanded. We've now sent them to Roswell Park, Upstate Cancer Center in New York, MD Anderson in Houston, and a few other places, plus individuals that find us on our website. So if anyone ever has someone in the AYA space or even, you know, pediatric as well, looking for a little pick me up of some kind, we know what it's like to be stuck in the hospital for a long period of time, right? Steve was stuck, gosh, I think it was eight to 10 weeks at one point when he went through his bone marrow transplant.  So that's where the idea for that has really kind of come into play here. And the other thing just to add to that too, that's part of our wellness programs, that it really is something that I know my mom is pretty proud of, is we instituted a smoothie day at University Hospitals here in Cleveland, where we fund a social worker to go around and deliver smoothies to patients. 

JOYCE 

 Oh, I love that. 

NICK 

Yeah. For multiple reasons. One, obviously anyone that's been through chemo treatments or radiation treatments of any kind know that to eat food can be tough. And so to get the nutrients you need, that's where the smoothies really come into play. Plus, for a lot of folks that may not have a background or education when it comes to the nutritional side of things, you can put a lot of things in smoothies. So it's been a way to help educate some folks as well. That's been something we've been doing for years at university hospitals and, you know, hearing my mom, we actually did a presentation yesterday at an organization and she really got emotional talking about that because that's something that is near and dear to her heart and is [she] pretty proud of the fact that we’re the ones funding that and started that at University Hospital. And we get some pretty cool letters from folks thanking us. It really isn't anything super expensive, but it can go such a long way for folks. So between those two things, it's really cool. The wellness program, I tip my hat to my mom because that's all her. 

JOYCE 

Yeah. And I think that connection with patients, if you are a patient and all of a sudden somebody comes in with a smoothie, I mean, it's like a nice, unexpected gift. I would think so. 

NICK Yeah. She rolls around in her cart. Michelle Rothstein is her name. And she just basically goes down the hall and it's smoothie day. The kids that are stuck there for a long period of time, they call her the smoothie lady. 

JOYCE 

So I was just going to ask, you know, your brother, you mentioned at the start of the podcast that he was first diagnosed at age 15. And here you are, what, 16 years later? And, you know, that's your brother. How did his diagnosis affect you? I would guess you are a young age, too. I don't know your age difference, but. 

NICK So, our age difference is five years different. I was a sophomore in college when Steve was diagnosed with his first cancer. You know, as a 20-year-old, I'll never forget the phone call from my dad saying they had a scan trying to figure out if it's malignant or benign, the tumor. And at 20 years old, with very little experience of cancer, I had no idea what either of those meant. 

JOYCE 

Right. 

NICK 

So, you know, when you hear cancer, immediately the worst, I think, was put into my brain, right, of, you know, Steve's going to die because he has cancer. When I drove home to see him in the hospital, because he had to start treatments immediately, you know, he was essentially himself, just laughing, having a good time. So, you know, it was, I think it took me a bit to really understand that this is not an overnight thing, right? This is a process and a long process and still going on, right? So initially, it was definitely hard. The first [step is] just to really put your head around it. I was fortunate that I had the escape of going to college, right, and getting away from it, where my older brother is two years older than I am. And even my parents, you know, they were all living together with Steve, essentially going through treatment. So they saw a lot more than I did originally. Because I was able to break away, you know, go party, do things that a 20, 21-year-old is doing. It was definitely hard. I was boxing at the time. So I was able to take out some aggression. But, you know, it definitely hit hard, right? You don't really, you know, expect that ever. And Steve, you know, being the baby of the family of the three brothers, and the age difference was a big one between him and then myself. 

My older brother was just two years older than I am. My older brother and I were much closer growing up than we were with Steve. Steve's cancer really brought our family closer together than we ever were, that's for sure. 

JOYCE 

Yeah, that happened with our family, too, with Max. It does, you know, you kind of have a more united front to get through it all. So what would you tell people who are dealing with a similar situation where a sibling or a son may be diagnosed, a young adult with cancer? Do you have any recommendations for them? 

NICK 

Yeah, I do, actually. And Steve and I presented on this, actually, Cancer Count a couple of years ago, that it took a while to recognize that Steve didn't need myself or my older brother to be another parent to him or another person to tell him what to do. And he needed us just to be there. And we really recognized that. It took us a while to really recognize that, honestly, even after his second cancer, that he didn't need another one of us to constantly just be like, why aren't you doing this? Why are you doing that? So my advice to people is listen to the person that's going through it. And even just ask them, I heard this from another individual, just say, what job do you need me to do? Do you need me to be the snack person? Do you need me to be the videogame person?  What do you need from me? That would be my advice for a sibling, for sure. And even a good friend, or family member that's not necessarily the parent. I think the parent role is a whole other ballgame. 

But from the sibling side of things and the good friend side of things, I couldn't recommend that enough of just saying to the person that's going through it, give me a job. What can I do? Everyone always says, hey, if you need anything, let me know. And while people mean well, that doesn't necessarily help the person that's going through it because they have a lot of people to ask them that. So I just thought that by phrasing it, what job can I do for you? Can I be the snack person or the video game person or get the movies or whatever the case might be? 

JOYCE 

Right. 

NICK 

So that would be my advice for people is just to be there, just to show up or even just say, hey, what job can I do? 

JOYCE 

I like that question. It's a very basic question. And it's easy to say, I think, to somebody because it makes sense. You know, so that's good. What's next for your foundation? 

NICK Oh, what is next for us? That's a great question. We are continuing to really focus on supporting our community that we have built over the past year and a half with COVID. From the standpoint of you know, [to] keep focusing on the print side of things with Elephants and Tea, the magazine reach, growing our reach with tha,t as more people are now accepting actual print copies of the hospital. That's one. Two, we really want to fund more research going forward, and we're actually looking at a couple different possibilities as we speak right now--one of which is dealing with relapsed patients with blood cancers, T-cell therapy specifically. So we're hopeful that we can be a part of that. And another is, you know, just to tease it a bit is looking at doing some sort of fun in-person get together. 

I'm not going to call it an event, but to have that opportunity, you know, hopefully towards the end of next year, because who the heck knows what's going to happen with COVID come spring. So we're mindful of how we plan that, but I can definitely tease this a bit that we're pretty close on finalizing something that'll get announced before the end of the year to do some sort of large activity with folks that we have gotten to know over the past year and a half and get them together, that we're just super excited because, like I said, we really, you know, me personally, this was definitely a personal job, there's no doubt, but this past year and a half, it's gotten even more personal. And so just kind of a way to thank those for you know, being here with us and a way to get people together that they've met virtually and have an opportunity for them to get together in person, I think is a big, big goal of ours right now. 

JOYCE 

Yeah, I would agree. I think that sounds wonderful that you could do that. I think many people are hoping that we can get back to seeing each other in person. So my last question is just if you would share how people can find you, your URL or any kind of contact info. 

NICK Yeah, for sure. So my contact info is Nick at ElephantsAndTea.com. Anybody can email me whenever they like. Going to ElephantsAndTea.com, if you want to check out the magazine and all the stories there and other events that we have going on. Then more about the foundation is at StephenGCancerFoundation.org - both those websites are up and running, doing good things. And like I said, my door is always open to anyone who has questions or is looking for some help 

JOYCE 

That's wonderful. Thank you so much, Nick. I really appreciate that you joined me. And I love just hearing all this about what you're doing. I would encourage people to visit the website and see what's out there through Elephants & Tea and the [StephenG Cancer] Foundation. So I hope to come back maybe sometime down the road and give us an update and let us know how things are going. I'll be sure to check in with you. 

NICK 

Absolutely. Thanks for having me, Joyce. 

JOYCE 

OK, thank you. 

Thank you for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. Go to maxmalloryfoundation.com to learn more about testicular cancer, to donate and send your suggestions for guests on the podcast. And join me next time for Don't Give Up on Testicular Cancer. 

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