Slaying The Dragon They Call Cancer

all be worth it. Another log on the fire here give a time. Welcome to the fire pit with Matt Janella. Kids cancer two words that should never exist in the same sentence, and yet after accidents, cancer is the second leading cause of death and children ages one to fourteen. According to the American Cancer Society, about ten thousand children will be diagnosed with cancer. In of those diagnosed will live five years or more. In the seventies, the five

year survival rate was fifty eight percent. So yes, there is significant progress, and that in large part is because of individuals like gran Owen you heard in the intro, who's doing everything in her power to raise money and then connect those resources to the right doctors, scientists, and family who are on the front lines of the fight. In this podcast, you'll hear a lot more about Grania Owen.

You'll meet Clay, her loyal and loving husband. You'll hear from one of the leading pediatric oncologists, and you'll hear the story of the first pediatric patient in the world to receive cart Sell therapy, Emily Whitehead, is now ten years cancer free. Is this a golf story, Not really, although golf and golfers have played a big part in the raising of the funds being used to help cure

Kids Cancer. You'll hear from a PGA Tour player who has the Curing Kids Cancer logo on his bag, and you'll hear from a major sports personality who has spent over fifteen years doing everything he can to help this cause. This all started for me because I received a direct message from a long time Twitter follower and now friend, Scott Ford, a k a AT fan of Rocky Top, who was reaching out and asking if I'd be interested

in playing in a golf tournament in October. The benefiting charity was Crying Kids Cancer and if I was interested, he'd put me in contact with the executive team. Well, I have kids, but you don't need to be a parent to want to help any cause. That's soul focus is to cure kids cancer. And after meeting and talking to Grania and Clay Owen and listening to their heartbreaking and yet also incredibly inspiring story, I decided to interview

them for this podcast. It's worth noting that I wouldn't be doing this without the support of companies like Link Soul, Dormy Workshop, and Part Points. The fire Pit podcast is produced by Alex Upeggy and the music is by Joe Horrowitz. Before we get started, a special thank you to the Owen family, not only for what they're doing for the greater good, but for their willingness to share their emotional story with us. I warn you it's a sad story,

but I can also promise an uplifting, an incredibly inspiring ending. Okay, Well, I am Granya Owen and Um. I have four boys, so first and foremost, I'm a mom. Um. I was born in England, moved here about twenty five years ago to the States, lived in Atlanta for a long time, and moved to Dallas about four years ago. Um, but I used to work for the London Stock Exchange when I lived in England, and I couldn't have imagined my life going in a more different direction than to end

up running a charity. And that is exactly what has happened. So my life has changed dramatically from what I had planned, or thought, or ever imagined it would be. But then that's kind of what happens in life, isn't it. It was December, and um, I have to I have to tell you a little, a little story first, and that is that we were at our next door neighbor's house with our four boys, and at that point the youngest was two and the oldest was seven, and the twins

were five. Um, so they were all running around like lunatics in my next door neighbor's garage because it was raining. It was supposed to be a birthday party, but they all ended up in her garage because it was raining. And this lady standing next to me looked at me and said, are they all yours? And I said, well, yeah, these four are. And she said, oh, well, God bless you, and I very nonchalantly turned to her and said, I

think he already has. And it was about three days later that Karen came home from school with a stomach ache and a fever, and Um, I took him to the doctor. They thought it was a virus, so we waited a couple of days and I took him to the doctor and they did a blood test, and that was when we discovered that he had leukemia. And what had seemed like a very throwaway comments suddenly, you know,

became something much more significant. I was like, well, I did think I was blessed, but now I'm not sure what to think because our whole world just stopped and went completely upside down. Leukemia, which are cancers of the bone, marrow, and blood, are the most common childhood cancers. They account for about of all cancers in children. Hey, Matt Cleo in here, I'm a co founder of Curing Kids Cancer,

and I really glad to be with you today. UM I M done a lot of things over my career, all in communications, however, former former newspaper guy, former TV guy, eight years at CNN and ended up working at A T and T through a series of acquisitions starting with Bell South that singular than a T and T all in the communications field. And you know, I just found myself in the middle of this whole childhood catcher thing. Is a dad who went to work one day and

got a phone call. It was in the middle of a y two k exercise because everybody thought the world was going to come to an end. So where we were at bell South practicing make sure all our systems were gonna work for the clock changing over. On December thirty one to January one, two thousand and I got a phone call and it was gone, Yes, she said, You've got to get to the hospital. I'm like, what are you talking about, UM, she's a killion sick. I don't like, Oh my gosh, what isn't She said, well,

we don't know, but they think it might be cancer. UM. And of course took off out of work immediately and mcbrin over at Children's Health Care about latter. For boys with lukmia, the treatment takes three and a half years and for girls it's two and a half years. UM and so we started on his treatment, going three times a week to the hospital Monday, Wednesday, Friday. I had my two year old, another five year old and a seven year old UM and basically the whole community UM

really gathered around us and helped us. Our church family cooked his meals, they did our washing, they kept my boys. Um. And it was just, you know, a totally different world. Um. And we were told that um, you know, leukemia and the type of leukemia that he had was very curable. Um. And so you know, we were we were hopeful that everything was going to be okay eventually. UM. But it was hard. It was very hard on him, and of

course we were just devastated. But you know, we were given you know, pretty good news on the day that said, it's likely to be the most common form of leukemia we cure. You know, at that point they were curing like eight to nine percent of cases. So we felt pretty good about things at that point. But that's kind of how it all started. A call at work and a trip to the hospital. The next thing, you knew, the next four years or so, we're completely consumed by

battling this terrible disease. Tell me about killing Oh gosh, okay, well hang gonn, I'll show you a picture Ellen. That's him. And he was a little monkey he Um. He was one of those kids who like, if there was something that could go wrong, it would go wrong. So like he was always the one that got into trouble and because there were twins, like I'd be I would walk out of the room and like two seconds later, I would hear this little voice going, oh, and I knew

the minute I heard that that something bad. It happened the minute I turned my back. And it was always Kellyan right in the middle of it. I mean, if there was a if there was a stream, he would fall in it. If there was a mud puddle, he would step in it. I mean it was he was one of those kids. But he had the best sense of humor. I mean he was He was just a joy. He really was. He was a ball of fire. I'll

tell you that. It's so different from his other brothers who had darker hair and uh killian head blonde hair and killian head. Green said. He was just everywhere all at once. Uh just the first to join in a party, the first to you know, raise his hand, to volunteer to do anything, love playing with his level of playing with his friends. And he loves sports. I mean, he

absolutely loves sports. Uh was you know on the baseball team, on the basketball team played ball headed um very inspirational to see him out there Um, I remember one time on the swim team, he actually he actually cried because, uh he came in second and he had just finished chemo. That so, I mean, that's not a kid he was. He just like he just wanted to be an ordinary kid. Very competitive, but just just a very loving kid. Love to tell jokes. Uh you know, it's just what do

you call a cow with no legs? Ground beef? So that was one of his favorites, you know. So he uh, he was just that. It was just a joy to be around. He really was. Again. When diagnosed with leukemia December, Killian was a month shy of his sixth birthday. There

were a lot of hard moments. But when we brought him home after his initial diagnosis, the doctors, you know, put him on chemotherapy and uh, you know, we we didn't know much of anything, and because he was so young, they actually put him on a lot of liquid medicines, which, as you're gonna imagine, just tasted horrible. And he would just fight tooth and nail. He did not want to take that medicine. It's just it was a battle night after night. And this was before you know, the internet

was what it is today. So that wasn't like they were like a bunch of parental groups on there that you could turn to for advice. You just had to call up people and and talk to them about what worked. And finally we found out, you know, you could get him to take a pill, and you could go to the pharmacy and get actual empty capsules and put the medicine inside the capsule. And so that was a huge win for us because I didn't think we were going

to get the medicine in him. I honestly was worried that he was going to get high enough dose because he was fighting and spitting it out and in tears, and we were in tears trying to give him medication night after night. So it was a it was a big win for us to build to reach that point where hey, we can put the stuffs on a capsule and he said, I'll swallow a pill. I'll learn how to swallow a pill that and he did and that made life a lot better. So he went into remission um.

You know, you have to get them into remission I think within the first thirty days, and we got him in remission um and that you know, remission doesn't mean beating cancer. A lot of people think, oh, thank god intermission. Well, that just means the medicine is working basically right, and it still means that he's going to have another three

years of treatment, even after recent remission. UM. So you know, so we we carried on with that and uh, but we did, you know, get him through that first pretty much through that first round of of chemo, and things were looking so great, and you know, we started planning his recovery party. And the treatment is really awful for

children because it wasn't designed for them. UM. But we got almost all the way through his treatment and we only had six months to go, and he was supposed to finish treatment on um St Patrick's Day, and so being irish, I thought, oh, well that's a good omen um. But um, with six months to go, we went for a routine blood test and discovered that the leukemia had come back worse than ever. UM. And so now our next option instead of just chemo, was a bone marrow transplant.

It's not like the way they portray it in the movies where a child gets leukemia and they say, oh, yes, a bone martor transplant. That's not what happens. It's usually you know, chemo first, and then if that fails, then

you have to go for a bone mirow transplant. Because a bone miro transplant is horrific because they kill off your entire immune system in order to put the new bone marrow in, and it involves radiation, and it's just awful for a child, and they have to be in isolation because they have no immune system and so they can't die if they get so much as a cold. Let me just relay a little bit about how how horrible it is for the kids they go through, you know, nauseam.

They developed mouth sores because the chemo is so powerful. Um yeah, you know it affects soft tissues, uh and and makes them like you have terrible ulcers and so and there's this's almost a cruel joke because one of the medicine's, pregnizone, makes you really hungry, and then the kids, you know, have these terrible mouth soorce and they can't eat. Um. You know. Yeah. I always say that losing your hair is the easiest bet you always you can always buy

a hat. It's all the other effects that are so terrible to watch them go through. I had to go through this again. With the with the bone marrow transplant to get his immune system uh to a point where they could give the bone marrow to him. And we were extremely fortunate and that his twin brother, Garrett. It was a perfect match, although because they were not identical, there was no more chance of him being a match than a regular sibling. But if they hadn't been identical,

then they would have both had leukemia. So it was one of those weird situations. But Killian went through the transplant. And the magic number for bone maritis plants is a hundred days post transplants, so if you can get to that point, then they say it's been successful. We did it. He did it. He got through that bone marrow transplant. It was extremely tough on his body, and he got out and he responded beautifully to it. And you have to get to a hundred days post transplant for it

to be considered a success. And we were in there at ninety days having another routine blood test when they called the society, so we need to talk to you. And at that point the doctors took us into a room and they said, we're really sorry, but he's had all the treatment he can have and you need to go and make some memories. And I was like, well, what, like, there's nothing else you can do, and they were like, well, no, he's had all the chemo and radiation and bone marrow transplantment,

nothing has worked, so we're out of options. And they told us that he had relapsed again and that we should go make some memories because there was no cure at that point for him. And we did. We went and made memories. We went to Disney. We had an amazing trip with him where he was still healthy enough to enjoy it with his brothers and his cousins and

an extended family. But it was very hard for Granding You and I because of course we were we were trying to remain happy and positive and pretend this was a you know, a trip to celebrate him cure, being cured of cancer, when in fact it was a you know, our last memory trip for us. We went to Disney World.

We went on a trip to Disney World with the family, and that was one of the hardest things I've ever done in my life because we told the boys we were celebrating Kellyan, you know, getting through his bone mat of transplant, and an actual fact we knew we were going because he was dying, and um, we had to smile and pretend that everything was great, and that was

so hard. While we were there, I was doing some research because I wasn't ready to give up, and I discovered an article about a brand new type of treatment called a targeted therapy, which is designed specifically for chemo resistant leukemia, which is obviously what Kellyan had. And um, the way it worked was it was attracted to the proteins that were on the outside of only the cancer cells,

not on regular cells. And this protein in particular was c D twenty two and UM, I knew that Killian was c D twenty two positive just from all the tests and things that he had to have. And I went to our doctor and I said, okay, so I've discovered you know, there is this treatment and he said yeah, And I said, so give it to Killian And he said, well,

we can't because it's not actually in treatment. It's still experimental, and um, you would have to get special permission from the f d. A. Well you never say that to a redhead, um, because that was a challenge. And I was like, okay. When we got back from Disney and GRANDI you know. She was just a warrior. She was not ready to give up. Despite the fact that doctors had said this was, you know, the end for for treatment.

She discovered a treatment that had was in was in the labs and had not been cleared by the FDA for children. I had noticed that one of the doctors who was working on this new type of treatment had an Irish name, and so I knew an Irish professor of microbiology at Trinity College, Dublin, and I called him and I said, Okay, I know this is a billion to one shot, but do you know this doctor who's working on this new drug? And he said, Grania. Not only do I know him, he used to be one

of my students. So I was like, okay, miracle, this is it, this is supposed to be. That is just too much of a what I call a God studence. I don't believe in coincidences. I believe in God studiences. And I was able to get touch with him, and um he put me in touch with the pediatric oncologist at the National Cancer Institute who was had been trying to get this drug into a clinical trial for three

and a half years. And Cillian was the perfect candidate because he had that protein on the outside of his cancer cells. He had been through every treatment that was available, and so he said, yes, I'll try and get you

special permission from the FDA. We bought a fax machine because at that point that was where the technology was, and we faxed this doctor every document we could possibly lay our hands on to do with Killian, and within a week he had got special permission from the FDA for Killian to be the first child in the world to try this new treatment. We got up to UM Washington, d C. Went to Bethesda where the National Cancer Institute is, and Killian was the first child in the world to

get this treatment. And remember them taking us aside and saying, we're going to have to do this in the I c U because we don't know what's going to happen. It could kill him. And they were like, do you still want to do this? And I looked at them and I said, Um, you know he's dying anyway, right And they were like yes, I said, so let's do it. Doesn't They were like okay, so um. When they gave him the drug, there was about twenty doctors in the

room and forty nurses and it were. Killian was fast asleep, thank god, because he would have freaked out if he'd seen all these doctors and nurses. And unfortunately, because he was the first child in the world to try this drug, they would have needed to give him twice the dose that they were allowed to give him by the FDA.

But the doctor took us aside and said, there is a second generation of this drug in the lab, and we've tested it on Killian's cancer cells and it would be eleven times more effective than this one that we're giving him right now. And I said, great, give it to him, and he said, Grania, I can't. We don't have the money to get it out of the lab

and into treatment. And at the time, Claim and I looked at each other and looked at him and we were like, why is he telling us about something that could say about our's life, but we can't give it to him. It was July two th three, Killy and Owen, who was nine at the time, had been fighting cancer for almost half his life. So we lost Killian several

weeks later. But you know, the doctors told us while we were there about another drug that was stuck in the lab that may have been more effective and may have been able to cure killing. And the reason they said they couldn't get it to the bedside was lack of funding. So it's a bit of a red flag foot ball h telling my wife that. So about a year later, she decided she was going to start up

a charity or just raise mine. At that point, she just wanted to raise money for childhood cancer, so she started thinking about how to do that and created during Kids Cancer. It was coming up to his first anniversary, and I was sitting with the other three boys, and I was trying to explain to them that we shouldn't be sad and upset because Kellyan was an angel and God had him and he was healthy and happy and God was looking after him better than we ever could,

even though it wasn't what we wanted to happen. And I suddenly remembered that drug and the fact that it was stuck in the lab and that it could actually save other children's lives and stop other families from having to go through what we went through. And I just knew, absolutely kind of right here that that was why he had told us, and that was what I was meant

to do. I knew that somehow or another, I was going to make sure that that drug got out of the lab and into treatment, and it was going to help other families and not I need that, but I knew there must be other drugs like that too. The original idea around this was to work with coaches. I told you how much Killian loved playing sports, and baseball was one of them. And the one of his baseball coaches actually had an idea. He said, at the end of the season, he told all the moms, he said,

do not buy me a gift. He said, let's just collect the money and let's give it. I'm sorry, Let's give it the Children's Healthcare of Atlanta, who are killing illustrated, and let's do some good with this money. So we thought, what a great idea there. You know, hundreds and hundreds of thousands and millions of kids all over the country playing sports, and why what you know, do these kids really do these coaches need another Starbucks gift card, they

need another T shirt or anything like that give card? No, Why why don't we just convince parents to give their money to curing kids cancer. I've never seen so many grown men cries. I did that first season when we started raising money that way, UM and I used to go around to baseball fields and you know, go to the presentations to the coaches, and UM, we give them the certificate and the T shirt and they just loved it.

So I thought maybe we would raise five thousand dollars that first season, and we ended up raising forty five thousand dollars, and so we knew it was a good idea. It was that love of sports and that that coaches gift that really got a got us off the ground and gave us a way to start raising some money for childhood cancer research goes. We did not want to see other children go through like Killian had gone through.

I mean, it's it's just the most devastating thing to lose a child, but just going through the process of watching your child fight cancer and the years that it takes, you know, and the isolation and the mouth source and all the horrible treatment that they have to go through. We didn't want other kids to have to go through that. We didn't want other families to have to go through that. We wanted to fund research that would find better cures,

more effective cures, pewer side effects. And I soon realized that if I wanted it to go to the research that I knew it needed to go to, I was going to have to do it myself. I couldn't just hand the money over to somebody else. I had to make sure it went where I wanted it to go. And so the only way I could do that was

to start my own charity. So officially we became a charity in two thousand and five and m basically since then we have partnered with many, many amazing people and doctors and hospitals and donors, and we have raised over twenty three million dollars. As for the doctor who mentioned to the Owens the alternate drug stuck in the system and in need of financial support. To this day, that doctor is. He is now the chairman of our Medical Advisory Board. He was the head of pediatric gun coology

at the National Cancer Institute. He's now at Children's Hospital Los Angeles and he heads that cancer clinic up there um And he says he doesn't know why he told me he would never normally do that. What's his name? His name is Dr Alan Wayne, and he and leegh Hellman, who was also had a pediatric and collegiate International cancer Institute are my two chairman of my medical advisory board. Where does Dr grub come in all this? Dr Grapp Okay, well, um,

he was a few years down the line. I was reading. I always try and read about, you know, what's the latest research and what's what's working what isn't because I feel like I need to know that in order to ask people to give me money, because I need to know where it's going that it's going to make a difference.

And um, I read about Dr grab and one of my other doctors told me about him too, and I did some research on the work he was doing and discovered that he'd had a massive, like percentage success rate with the children that he had treated with this new treatment called car T cell therapy. I itically and another

one of my good sidences. Cart cell therapy wouldn't exist if there hadn't been that first targeted therapy that Killian pioneered because it works on the same principle in the attaches itself to the proteins that are only on the outside of the leukemia cells, not on the healthy cells. And um, in Killian's case, at that point, it released a toxin that was supposed to kill the cancer cell. Now, what they do is they take your own T cells

from your body. Um, they genetically re engineer them in the lab so that they recognize those proteins that are only on the cancer cells, not the healthy cells. They put the re engineered cells back into the child. They don't then need chemo or radiation because their own immune system, their T cells will recognize the cancer cells and them. Uh, good morning, Dr. Grew up. How are you very well?

Thank you for thank you for taking this time. Sure, what's your sense and perspective of of how you how you fit into this into this narrative. I'm a physician at Children's Hospital Philadelphia that runs the self therapy and transplant service and an expert in a particular kind of self therapy called cart and UH, curing kids cancer has been uh incredibly instrumental in the work that we do research wise to get new self therapies delivered to kids

with cancer. Uh and so, UM, you know, we can get into a lot of details, but the bottom line is that, uh, we're moving closer and closer to more therapies that are available for kids with leukemia, lymphoma, and similar diseases. And this is an area where Curing Kids Cancer has been incredibly helpful to us, and that that really comes comes down to awareness and funding. Uh yes, both of those things, but absolutely funding has been a

huge part of it. So Gran you Owen has been an incredible supporter of our work and the group and Curing Kids Cancer and uh um so uh including uh uh money that has supported clinical trials that we were just waiting to open and needed support forward to be able to do that. Um. So uh yeah, they're they're an amazing group of people. Talk to me more about the Owen family and and and you'r how you got to know them and uh and and what's so inspiring

about them? Well, I mean, uh grind you reached out, um kind of out of the blue and it was an amazing you know, sort of Christmas season um conversation that resulted in one of the first uh grants that

we got from the organization. And I learned a little bit about her son's story and actually there was a connection that we made not only around the fact that I was working on pediatric sell therapy and had treated the first child with leukemia with a sell therapy um, but that the I don't want to get too technical about this, but the target that we were exploring as sort of a second line in this sell therapy was something that was initially pioneered in her own son's treatment.

And so that new target it has a name. That name is CD twenty two. It doesn't matter, but uh, it was something that had started its life as a potential treatment way back before self therapy and at the time that her child was being treated and then has come full circle into self therapy and being something that

we've treated a number of kids with successfully. So safe to say her motivation was obviously, I want to make sure it happened in my son's case where it's affordability or access issues, um, doesn't happen to other kids going forward. That seems to That's my general understanding of of it. Was like her motivation was, I want to try to help other families, other kids going forward. Correct, no doubt

about that. And and you know, I think you raise an interesting point, which is affordability and access or a key part of this equation, and happy to talk about that.

But then the step before affordability access is creation. You have to make these new therapies and you have to apply them to kids, which is often very hard to do in the medical market the way it exists right now because kids are a smaller market than adults UM and so uh, it's really important to have the support um of foundations like you're in kids cancer to sort of get the ball rolling and to get the data together that gets the drug companies interested in these newer

treatments UM and then you know once you have something FDA approved, and the first fd approved sell therapy in the in the world was kim Riya, which was the treatment that we used for our first patient, Emily Whitehead UM that then you get into the access issues, right It's it's an expensive therapy. It's offered at centers of excellence. You have to be able to get the patients there. And that's another area where we've gotten help from Foundations,

and Curing kids cancer is among them. Where we're able to bring families in, pay for their hotel stay while they're in the Philadelphia area, pay for their travel to US, and to just sort of deal with these access issues by helping the families and making it possible to even

get here. They have had a nineties seven percent success rate with this treatment for children who have leukemia, and in the beginning it was mostly children who were on hospice care, so they've been told, the parents have been told there was nothing else that could be done for their kids. And then Dr comes along with his new Carte cell therapy and says, we've got one more thing

we can try. And the kids were surviving and I called him and I said, We've got a hundred thousand dollar grant and I want to give it to you. And he said, oh, well, that's amazing because this morning I was in my UM meeting and there are four children who need treatment, and he said, we don't have the money to give it to them. And I said, oh, how much does it cost? Thinking he was going to say hundreds of thousands of dollars and he said, well,

it costs about twenty five thousand dollars per child. And I said, you're not going to believe this, but I've already put a check in the mail to you and it's for a hundred thousand dollars. And he was like, that is a miracle. Do we feel like we would make faster progress in the pediatr oncology world if there were more focus both from drug companies and government funders on this absolutely. Uh. Do do the private foundations like hearing kids cancer fill in UM part of that gap?

You bet they do? Uh, and they you know, Grintia has seems to have a personal instinct for reaching out just when you know things are getting a little thin and we're like, where were we going to go with this next? And then she's like, oh, you want to open that trial, let me help you with that. And so yes, it is. It is. Uh. One would wish that that wasn't the way that it worked, but you know, we sure, we sure appreciate it. There's no doubt about that.

Neither one of us could believe that that timing came out so well. But there's been many times since then where I've called him and told him about things that we wanted to do, and he said, this is the perfect time. And so now he's working on a combo treatment that there are two proteins on Luking Yoursells nineteen and twenty one twenty two Peggy parton and the first treatment that they developed, Leoney, attached itself to c D nineteen.

So now they've developed one that has both UM proteins targeted, so c D nineteen and c D twenty two and he's hoping that he will be able to say that he gets a hundred percent success rate and getting kids back into remission. You fight this good fight. What what is it about your your passion and motivation and your education that has led you to this to this field. So UM, you know, the good news about pediatric cancer is that many children who are diagnosed with cancer today

are cured UM three fourths or more. So we're you know, we've developed these new therapies. We've had this approach in pediatric cancer of putting lots of kids on clinical trials and that's um upped the success rates in many cancers, not all of them, but many of them. Uh. And and leukemia is actually one of them where we we've gotten way more successful. UM. But as a guy who does bone marrow transplant, I'm seeing the patients who aren't doing well right, who have relapsed, who have us disease

that sometimes isn't under control. And so what motivates me is um wanting to do something for those kids. Uh and not accepting the fact that we're going to use the tools that I had when I was a fellow in the nineties. We need to have something completely different. And that completely different thing is the engineered self therapies that are now available, including this FDA proof therapy called

Kim Ryan. And you know, we at chop and at the University of Pennsylvania, we're uh really leading that whole charge toward the first FDA approval. So what motivates me is I see what it looks like when it doesn't work, uh, and it is completely unacceptable. We're so proud that we were able to get funding to him at a critical juncture and his and his work so that we were able to drive this forward. And now we see its saving children's lives. So we're seeing it being adapted for adults.

And I mean, we went into this thing. If we can just save one life, it'll be fantastic. But now we're saying life after life after life being saved by the research for fund and Steve Groups. A big part of that summarize in Layman's terms cell therapy. Are you literally taking bad cells out and replacing them with good cells? Is that? I mean? Is that so we're taking I think what you're saying is is close to right. Um, so we're taking good cells out. So we got a

patient with leukemia. We're taking good cells out, and we may take out some leukemia cells, but that doesn't matter, UH. And we take those cells out. Those cells are called T cells, and T cells are part of the immune system. They fight viruses, but they could fight cancer if you could just give them a way to find the cancer cells, which they can't do. And so what we do is

we take those cells out of the body. It takes a few hours of just filtering the cells out of the blood, uh, and then we basically genetically engineer the cells. We expose the cells to a virus. The virus changes the DNA of the T cell, and then that change in the DNA of T cell gives it the instructions it needs to go out and find the cancer. And once it finds the cancer, T cells are perfectly good at killing it. That's what they're for. But they the find part didn't work. So what we do is we

fix the fine part. And what happens so amazing about this is if you have patients with a large amount of leukemia in their bodies, these T cells will grow and grow and grow to a level that is necessary to control the disease. So you've got a little disease, they grow a little. You've got a lot of disease, they grow a lot. And in that situation you can get patients with literally pounds of leukemia into remission and

that that party is astonishing, and that differs. Just to be clear, when you give a normal drug, when you take something by mouth, when you get something by I V. That's all the drug you get and then it goes away and then you give the drug again. This is a living drug where the cells grow to the level needed stay in the body again. Our first patient, Emily Whitehead, still has these cells on the hunt in her body ten years later and she's been in remission ever since since.

She's our furthest out patient. Um. So, the theory is really teach your your immune system to do something it didn't know how to do. The tools we have to do that are so much more powerful than they were

even you know, twenty years ago. So to go back to my attempt at summarizing, you're actually taking out good cells, educating them, giving them their master's degree in finding cancer cells, putting it back in and say you know, go go go, go teach the masses right exactly, and and you you know, it's like if you could imagine an army that if it accounts encounters another army that's bigger than it is, decides to grow. That's what t cells can do. And

so you're your your summary is perfect. That's exactly what happens that that. I mean, it makes It gives me chill, It gives me hope, it gives me, you know, borderline brings it, you know. I mean if I could get a tear if I really focused on because it's like this is this is astounding. I mean, this, this has got to you know, for you in this field and in this fight on the front lines. That gives you a lot of hope. It does, it absolutely does. But let me be honest with you and also tell you

what's missing. So where the hope is is all in blood cancers, So leukemia, lymphoma, mi aloma, all of these blood cancers. We've had amazing results both in adults and kids across multiple different diagnoses. Where you want this to work, especially for adult patients is solid tumors like breast cancer,

lung cancer, pancreas cancer. There we don't have the recipe yet and so we're we're waiting for that sort of transformative type of result in those uh more common adults solid tumors, and that would change the whole cancer world as it is. We've changed the look for blood cancer patients across the age spectrum and it's an amazing result. But you know, that's what we're missing, is that recipe for the solid tumors. I appreciate that, that perspective and

the reality. UM. I also appreciate the fact that without people like the Owen family, without them, you know, like I still I too, said to grind you. You know, like if I lost my child, I'm not sure I would leave a room. You know, I just sucked my thumb and curl up in a ball and and and wallow in and misery. Um for her to get up off that off that bed of of sadness and do something about it and get to million raised and counting and and and connect with people like yourself and support

the cause. You know what we we we we wouldn't be where we are today. So I appreciate everybody involved here. Yeah. No, she's in Dole and she's had such a delight to talk to. She gets all of this, UM. She has incredibly sophisticated understanding, but she also has great instincts for what isn't isn't gonna work? Uh, and that I don't you can't teach somebody that they just got it or they don't. Well, that's that's the power of a mother, right, Like that's when you know God knows no fury like

a pistol. Right. Um, well, thank you so much for your time, so happy to do it, so thanks for the time. I mean, you're literally curing kids cancer. Yes, yes, I know. It gives me goose bumps when I talk about it because I sat at my kitchen table thinking if I could just say one child, like Killian, if I could just say one child, I would be happy. And now I know that we've managed to save hundreds of children, and we've given them back to their parents

when they've been told there's no hope. I mean that to me is you know, if if if I joined Killian tomorrow and I get to see my angel again, it will all be worth it. Um. But yeah, there have been many times when I felt like giving up. But doctors like Dr Grupp are just so dedicated and so amazing. They're such amazing people and they love They love the fact that we're so interested in what they're doing,

and we we don't just hand over a check. We want to know how it works and why it works, and you know, so that we can tell other people what they're doing, because it is truly amazing. I mean, it's it's the It was the beginning of immunotherapy. That is what immunotherapy is based on. And you know, to think that we had a teeny tiny little part of that is just astonishing to me, miraculous. So immunotherapy hits

close to home for me. My mother in law almost a year ago was diagnosed with melanoma on the lung, very rare and in in an operable spot, and after eight treatments of immunotherapy through a port in her chest, she was recently told by two doctors that she's now cancer free. Back to Grania Owen, who's the first to admit that she's not able to do what she does

without the support of so many others. We are the charity of choice of me Comb Car Auctions, and they are the largest classical muscle car auction house in the world. They adopted us as their charity eleven years ago and when they adopted us. It was me raising money full time and two ladies helping me part time, and yet Dana Maecam, who ran a multimillion dollar company at that point, was willing to partner with me because he believed in what I was doing. And since then they have helped

us raise eleven million dollars. And I were at the last three auctions I have been at, and I go to all of the car auctions. I have met people who have told me about children who are on treatments that we have helped fund, and the chances of that

happening are slim, I would have thought. So it must be out It must be helping, It must be making a difference out there for more children than I can possibly realize, because why you know the fact that these people are at me coom auctions and they hear me speak and they tell me about the child that they are related to or whatever you know or they know, and then I get to find out that it's something that we funded that they are being treated with and

that is helping to save their lives. I mean that what are the chances of that? I don't know. I don't know, but it must be making a difference where does golf fit into all this? Oh gosh, in all sorts of ways. Um. First of all, we started our golf tournament. I think it was seventeen. I think this is our seventeenth golf tournament. I may have that wrong. UM, but UM we started out with a T and T being the UM host for the golf tournament. And UM

it has grown bigger and bigger every year. And UM at the beginning there again that was something that Lee Corso would always come to speak at. And UM we've had some amazing people come along, UM join in and it's gotten bigger and bigger, and UM this year we are sold out already. We were sold out a couple of months, well about a month ago. UM. And it's not until October. UM it's at Lakewood in Dallas. UM this year. And IBM and a company called Technahindra are

two of our big sponsors. And IBM is amazing. They've been fantastic sponsors. And UM it I mean it has raised several million dollars all by itself. We raise at least three or four hundred thousand dollars with it every year and it has been as much as five fifty thousand dollars in a year, so UM, it's a huge It is by far our biggest fundraising event. UM. And the companies come back year after year and sponsor and um.

You know, we've had some people who have been with us the whole time and that's to me unbelievable that they are that dedicated. And we talk about what we do. We have at dinner the night before the golf tournament of the i P dinner and we make a point of explaining to people exactly what it is we do and why we do it. And they love that because

it gives it some meaning for them. They're not just you know, enjoying themselves playing golf, although hopefully they do that too, but you know, when they donate money, they know that it's really making a difference for these kids and that means something to them, and that's why they come back every year. Matt Nie Smith is a PGA Tour player who finished the season three in the FedEx

Cup standings. A graduate of the University of South Carolina in twenty sixteen, he joined the PGA Tour in His best finished last year was a T three at the Valspark Championship. He made twenty cuts his wife, Abigail, who he proposed to on the eighteenth green of the Harbor Town Golf Links, also graduated from USC and used to

work for Grannia Owen at Carrying Kids Cancer. Nie Smith has the logo on his bag, and they both remained very involved in the charity and specifically the golf tournament, which will be held on October three at Lakewood Country Club in Dallas. Here's Nie Smith on how and why he got involved. The coach of South Carolina, where I went to school, had leukemia as well, so right when I was getting recruited, um, he was diagnosed with leukemia

and ended up. I mean he's been in recession now for almost ten for ten years or so probably so. Granna and him knew each other from the fire truck pull and stuff like that. So I went up started playing when I was in school, right and I got out of school, me and him, we're on a team together, and that was my first introduction to playing. Everybody thought that was pretty unfair, so I thought it was relatively

unfair as well. So I lost the first year, we won the second year, and then after we won, I was like, Okay, I'll find a new spot I'll find another way to contribute. So um, this year we did. I played, uh god, I had probably thirty six groups or something like that. They had like thirty six groups, so I did. Um, they could pay me fifty bucks, they could pay for me to hit a shot for their group, and if anybody got it inside me, I

matched the donation as well. So just trying to find ways to help people kind of I don't know, get their foot in the door. And then also looking for any way where I can help in our presence and just me being there or trying to donate as well. I mean we still we donate a couple of times a year, and just trying to help out any way I possibly can and it's your yeah, and we got it on the golf bag. Having worked closely with Grania and curing kids cancer for so many years. Here's Abigail

Nei Smith on watching Grana in action. She is so focused and knows what exactly is needed to see things progress and the things I've learned from her just sharing um, going through different reports and articles that she'll share with

us um about upcoming research. I mean it's just amazing, but you know, knowing her personal story and how you know she was relentless and even in any health journey that you are your advocate, your you are it and knowing that, you know, she didn't just stop when Killean was diagnosed. She kept going and looking for new things. And she does that all the time with c k C. She's always looking it new things, going out, talking to

different doctors, seeing what's going on. And it's just amazing because she is relentless and works tirelessly to make sure that Curing Kids Cancer is funding the best projects out there. You know, obviously the golf tournament is sold out, but how can how can people who hear this story and feel inclined to participate or support, how can they? How

can they do that? We've got lots of other events, not just the golf tournament, so UM, you know, people can participate in the events, they can volunteer to help with them. UM. We have a golf tournament in Atlanta as well. UM that's in the spring. And UM we have all sorts of other fundraising events both in well, actually we have them in South Carolina and Atlanta and here in Dallas. UM and also make them car auctions. UM, like has said, they stop the auction every day and

let me speak about the charity. And people can donate, they can buy, well, they can bid on a neon signed that mecomb gives to the highest bidder, so it's a gift from me Comb, but the bidder is making a donation to Curing Kids Cancer. So, um, you know, there are multiple ways. Just go to Curing Kids Cancer dot org and you will see lots of different ways that you can help support us. Just make a donation.

I mean, coaches, Curing Kids Cancer is still going. So if you've got a child in sports, you can support us that way. Um. Just you know, pretty much anyway you can think of people who have employee giving, they can help us because we're registered. We're a full five O, one C three um. So yeah, lots and lots of different ways. Amazon Smile is one of the big days that people can help us with it making absolutely they

don't even have to make a donation. They can just do their regular shopping on Amazon and we are listed as one of the charities for Amazon Smile and we get a percentage of everything that they buy from Amazon, and it's a donation from Amazon, so they don't even spend any extra money. Um, very easy way to help. What about Lee Corso? Lee? Oh my gosh, Lee was amazing.

Clay Clay works for A T and T and they were sponsoring the College Football Hall of Fame, a kick off lunch that they used to do every year in Atlanta for the college football season, and Lee was obviously the main speaker, but Clay was the representative for A T and T, and right he was right introducing Lee, and right before he did that, he mentioned charity and said, Okay, this is my thirty second elevator speech. We started charity because we lost one of our kids and blah blah.

And as he was coming off, Lee grabbed him and said, let me know what I can do to help, and Clay looked at him and he said, no, I mean it. I feel like I'm supposed to help you. He's everything you know I hope that he's going to be because he was just so positive and inspirational and you know, always makes time to to do whatever you want him to do, whether they're shooting a public service announcement, are coming to a gala. He's come for many golf tournaments

over the years. You know. Unfortunately, a couple of years ago he did have a stroke, but he used to used to come to the golf tournaments regularly and play, and it was such a delight to have him at the at the golf tournaments and he would do you know Q and as with the golfers, who would talk about, you know, the college football sea and it was often to the fall when we'd uh, we do these things

and they just couldn't get enough of Lee. But he's he's been a good friend, always there and he always ends every conversation the same way, what else can I do for you? And you know, you just gotta love that guy. He's just just tremendous. Mr. Of course, so he Matt, thank you for doing this, gay mad Yeah, well it's it's it's an honor to be a part of small part of this story. Thank you for doing it.

It's an honor to be talking to you, sir. I appreciate all that you've you've ever done, and all the entertainment you've brought me in my life. Thank you, thank you. You're welcome. You're welcome, my friend. Curing kids cancer? What does it mean to you? Wellly fifteen years ago I met Clay Owen and when he's making a speech in Atlanta, and he talked about he and his wife party lost a nine year old son, Killian Killian to life land leukemium, and I was so touched I saw it. I said

to myself, I gotta be involved in this guy. This guy is too too good to read too. So I walk up after the stage, I grabbed him and I said, how can I help you? Know you hear the words kid and cancer. How do you not help a program based on making sure that kids don't die from cancer? Well, a number one thing is you've got to believe in it. When it is, the kids and cancer don't go together, so you gotta do everything in their power to keep

that from happening. And then when they, like God forbid, that does happen to him, they've got to have someplace they go to help cure them. Well, you have a big voice, you have a big following, you have a big network, you have a big fan base. So for someone like you to get involved in something like this, it matters to somebody like the Owen family. Well, another thing, in case somebody's watching us, Curing Kids Cancer DOT or Curing Kids cancer DOT ring is the way they can

make donations. I try to do as much as I can and help them, but I did related to me as much help as it as they can get. Lee Corso is eighty eight years old. He's been a part of the College Game Day since its inception in and he's famous for wearing the head gear of the mascot associated with the team that he's picking to win the big Game. He's back on the desk this year for a thirty sixth season, flanked by Rhes Davis, Kirk, Herbstreet and Desmond Howard. But I'm still working. We are. You're

an inspiration. You're an inspiration. Keep going and uh and keep doing what you're doing and keep bringing smiles to our faces. We appreciate you, sir. Thank you very much. Curing Kids Cancer dot org. So, as we get to the end of this podcast, some final reflections first, I'd say my biggest takeaway is the difference one family can have on making sure so many other kids and families don't have to go through what they've gone through. It's

all so powerful, inspiring and impactful. I was really touched by how emotional it is for them still to this day, almost twenty years later. Here's clay. It's never natural to lose, to lose your child, that's for sure, no matter what the cause. And uh, you know that that whole just remains there, and it's I'm afraid it's a bit like an open sore. It's always there, you know. Does it get easier, yes, it gets easier. Um, But as you can tell, just those memories never leave you, those feelings

never leave you. The sense of loss will always be there, I think, no matter how old I could. Oh, but we've been very blessed as a family and that we've always stayed together. Were from a close um. Everybody has pitched him with the efforts around here and gets cancer has just been a part of our lives, um, you know, day after day, year after year, and and Grania never gives up. I mean she just really never gives up.

I have my regular, you know job as a as a pr guy at a T and T. But she goes into the arena every week every day and she, uh, she slays the dragons. Tell any person who has a child to think to lose that child. For me, I don't'm not sure that I would be able to go on let alone, you know, be able to do what you've done, what you're still doing to try to make

a difference. I I questioned my own ability and strength and resolve to be able to sort of get up and do something about it, as opposed to wallowing in your own sort of loss, which is totally understandable. I mean totally understandable. But for you to now I have done what you've done and continue to do is just

so inspiring, honestly. I The thing is that I did not have the luxury of feeling sorry for myself because that would have been way too selfish because I had three other boys that needed me, and they saved me from myself. Um it was trying to humphort them, was you know? The first anniversary was when I realized that I had a purpose, I had something that I just was absolutely convicted that that was what I was supposed to do. I just I can't explain it to you

any simpler than it was. It was a feeling like right in the center of me knowing that that was what I was supposed to go and do. And the one thing that Kellyan could not stand when he was sick was me getting upset If I cried, he lost it. And so I knew that I couldn't. I had spent a year. I really was depressed. I was, I was sad, I was. I was angry. I didn't understand why it had happened, and other people's children were being better and mine didn't, And you know it, I was. I was

very angry. I was angry at God. And I think sitting down with my boys and trying to explain to them why it had happened, and that, you know, not necessarily why it had happened, but that Kellyan was was okay. He was better now, he was being looked after, better than we ever could look after him. And I knew he was an angel. I just knew it. And I think that like kicked me out of my self pity, and it made me realize that Kellyan would want me to get off my ass and do something. Do you

think Killan would be proud of you? Oh? Oh, I don't know. I think I think he would be cheering me. I know he cheers me on. He tells me to kick our all the time. UM. So I'm sorry you'll probably have to edit that out now, aren't you. Um? But yes, he's he is if he was such a happy, determined little chap that I know he's up there cheering us on all the time, and my God, studences happened

because of him. I'm convinced of that. We've had so many things happen that have helped us along the way, and we've been so blessed with the with the people who have helped us along the way that I know that that's because he's up there watching overs. He's our guardian angel. How old are up your boys now? Oh? Gosh, okay, so my eldest is now thirty. Um, Killian's twin is twenty eight and my baby is twenty five? And do you have any grandkids or what's this status? Well yet not, yeah,

but I am looking forward to that. I wish they'd hurry up. But don't tell him. I said that. Do you know the name Emily Whitehead? I do, so. Apparently she is she is the first, first, the first one to really get this this treatment she is, she's got and I think it's basically because of what started with Killian ended up becoming the first treatment for Emily, who's now, you know, living, the first one to successfully be treated. Family's hell, she's she's basically on her death Betton, Yeah,

the treatments, you know what. Hours days later, she's like feeling better. I mean, truly her uncle. I'll leave you with this. In May, Emily Whitehead and her family celebrated ten years of being cancer free and playing for you Now a short story on Emily produced and distributed by the Children's Hospital of Philadelphia. You'll hear from Emily and her parents Tom and Carry, and you'll hear again from Dr Grupp. It's definitely a blessing that I don't remember

what happened during that time. I really only remember like the fun things like playing air hockey with my dad or doing things like that. So I mean occasionally I'll have to ask, like, when did this happen? Or when did we do this? Because I'm sure that my parents remember everything. Emily was diagnosed when she was five years old with acute lymphoblastic leukemia, and they told us that it's the most common type of childhood cancer and also

the most treatable. But once you relapse, and relapse more than once like Emily did, there are fewer options to treat that. I got to the point to where they said, here, we don't have any more options for her and um, we think it's time for you to take her home and she'll have a couple of weeks left. We just looked at each other and said we have to call TOP. At that point in time, her treating doctors are saying the only option for a patient in this situation is hospice.

Family didn't want that answer, and by an amazing series of events, this Carte trial opened at the exact moment that she needed it. We know how close we were to losing her, but finding something outside the box that was a little bit different gave us hope. Dr group was up front saying, we don't know what's going to happen, but we knew that we were surrounded by a great team who just wanted to help Emily, and um, you know, if we try this and it doesn't work, we know

that we did try everything that was out there. We did everything we possibly could over the next twenty four hours. That was the scariest part of her treatment. Those cells killing the cancer so fast overwhelmed her system and things were just kept getting worse. She got so sick that we didn't think she was going to make it. We identified a number of these proteins that were unbelievably high, but one of them was actually a protein that we had a drug for. We gave her that drug and

that changed everything. She won't come actually on her seventh birthday on May second of two thousand and twelve, and then they tested her. Doctor Grupp said to me, this is amazing. We don't see any cancer. You know. We just thought, let's see what happened, and then it just this was so exciting within the field of cancer therapy. I feel like her experience with cart has in some ways changed the world. We learned that we could do this in kids. We learned how to control the toxicity.

We learned that we could skip bone arrow transplants. I always like to thank the team at TOP. Without them, I wouldn't be here and having the opportunity to leave the hospital and come home and just live a normal life and have things like going to college or getting my license. It's so important to families who have had

to go through cancer treatment. So I always like to tell families and children right now who are in treatment that it is really important to never give up and to always keep believing in yourself and in the words of my dad, to find something to smile about every day. Just finding that little ray of hope can really help you through some hard times. Do I believe Emily's cured? Do I believe the other children who are five, six, seven, eight,

nine years out from their therapy are cured. I believe they are