Speaker 1: I mean you're literally curing kids cancer. Yes, yes, I know.
Speaker 1: It gives me goose bumps when I talk about it,
Speaker 1: because I sat at my kitchen table thinking if I
Speaker 1: could just save one child like Killian, if I could
Speaker 1: just save one child, I would be happy. And now
Speaker 1: I know that we've managed to save hundreds of children,
Speaker 1: and we've given them back to their parents when they've
Speaker 1: been told there's no hope. I mean that to me
Speaker 1: is you know, if if if I joined Killian tomorrow
Speaker 1: and I get to see my angel again, it will
Speaker 1: all be worth it. Another log on the fire here
Speaker 1: give a time. Welcome to the fire pit with Matt Janella.
Speaker 1: Kids cancer two words that should never exist in the
Speaker 1: same sentence, and yet after accidents, cancer is the second
Speaker 1: leading cause of death and children ages one to fourteen.
Speaker 1: According to the American Cancer Society, about ten thousand children
Speaker 1: will be diagnosed with cancer. In of those diagnosed will
Speaker 1: live five years or more. In the seventies, the five
Speaker 1: year survival rate was fifty eight percent. So yes, there
Speaker 1: is significant progress, and that in large part is because
Speaker 1: of individuals like gran Owen you heard in the intro,
Speaker 1: who's doing everything in her power to raise money and
Speaker 1: then connect those resources to the right doctors, scientists, and
Speaker 1: family who are on the front lines of the fight.
Speaker 1: In this podcast, you'll hear a lot more about Grania Owen.
Speaker 1: You'll meet Clay, her loyal and loving husband. You'll hear
Speaker 1: from one of the leading pediatric oncologists, and you'll hear
Speaker 1: the story of the first pediatric patient in the world
Speaker 1: to receive cart Sell therapy, Emily Whitehead, is now ten
Speaker 1: years cancer free. Is this a golf story, Not really,
Speaker 1: although golf and golfers have played a big part in
Speaker 1: the raising of the funds being used to help cure
Speaker 1: Kids Cancer. You'll hear from a PGA Tour player who
Speaker 1: has the Curing Kids Cancer logo on his bag, and
Speaker 1: you'll hear from a major sports personality who has spent
Speaker 1: over fifteen years doing everything he can to help this cause.
Speaker 1: This all started for me because I received a direct
Speaker 1: message from a long time Twitter follower and now friend,
Speaker 1: Scott Ford, a k a AT fan of Rocky Top,
Speaker 1: who was reaching out and asking if I'd be interested
Speaker 1: in playing in a golf tournament in October. The benefiting
Speaker 1: charity was Crying Kids Cancer and if I was interested,
Speaker 1: he'd put me in contact with the executive team. Well,
Speaker 1: I have kids, but you don't need to be a
Speaker 1: parent to want to help any cause. That's soul focus
Speaker 1: is to cure kids cancer. And after meeting and talking
Speaker 1: to Grania and Clay Owen and listening to their heartbreaking
Speaker 1: and yet also incredibly inspiring story, I decided to interview
Speaker 1: them for this podcast. It's worth noting that I wouldn't
Speaker 1: be doing this without the support of companies like Link Soul,
Speaker 1: Dormy Workshop, and Part Points. The fire Pit podcast is
Speaker 1: produced by Alex Upeggy and the music is by Joe Horrowitz.
Speaker 1: Before we get started, a special thank you to the
Speaker 1: Owen family, not only for what they're doing for the
Speaker 1: greater good, but for their willingness to share their emotional
Speaker 1: story with us. I warn you it's a sad story,
Speaker 1: but I can also promise an uplifting, an incredibly inspiring ending. Okay, Well,
Speaker 1: I am Granya Owen and Um. I have four boys,
Speaker 1: so first and foremost, I'm a mom. Um. I was
Speaker 1: born in England, moved here about twenty five years ago
Speaker 1: to the States, lived in Atlanta for a long time,
Speaker 1: and moved to Dallas about four years ago. Um, but
Speaker 1: I used to work for the London Stock Exchange when
Speaker 1: I lived in England, and I couldn't have imagined my
Speaker 1: life going in a more different direction than to end
Speaker 1: up running a charity. And that is exactly what has happened.
Speaker 1: So my life has changed dramatically from what I had planned,
Speaker 1: or thought, or ever imagined it would be. But then
Speaker 1: that's kind of what happens in life, isn't it. It
Speaker 1: was December, and um, I have to I have to
Speaker 1: tell you a little, a little story first, and that
Speaker 1: is that we were at our next door neighbor's house
Speaker 1: with our four boys, and at that point the youngest
Speaker 1: was two and the oldest was seven, and the twins
Speaker 1: were five. Um, so they were all running around like
Speaker 1: lunatics in my next door neighbor's garage because it was raining.
Speaker 1: It was supposed to be a birthday party, but they
Speaker 1: all ended up in her garage because it was raining.
Speaker 1: And this lady standing next to me looked at me
Speaker 1: and said, are they all yours? And I said, well, yeah,
Speaker 1: these four are. And she said, oh, well, God bless you,
Speaker 1: and I very nonchalantly turned to her and said, I
Speaker 1: think he already has. And it was about three days
Speaker 1: later that Karen came home from school with a stomach
Speaker 1: ache and a fever, and Um, I took him to
Speaker 1: the doctor. They thought it was a virus, so we
Speaker 1: waited a couple of days and I took him to
Speaker 1: the doctor and they did a blood test, and that
Speaker 1: was when we discovered that he had leukemia. And what
Speaker 1: had seemed like a very throwaway comments suddenly, you know,
Speaker 1: became something much more significant. I was like, well, I
Speaker 1: did think I was blessed, but now I'm not sure
Speaker 1: what to think because our whole world just stopped and
Speaker 1: went completely upside down. Leukemia, which are cancers of the bone, marrow,
Speaker 1: and blood, are the most common childhood cancers. They account
Speaker 1: for about of all cancers in children. Hey, Matt Cleo
Speaker 1: in here, I'm a co founder of Curing Kids Cancer,
Speaker 1: and I really glad to be with you today. UM
Speaker 1: I M done a lot of things over my career,
Speaker 1: all in communications, however, former former newspaper guy, former TV guy,
Speaker 1: eight years at CNN and ended up working at A
Speaker 1: T and T through a series of acquisitions starting with
Speaker 1: Bell South that singular than a T and T all
Speaker 1: in the communications field. And you know, I just found
Speaker 1: myself in the middle of this whole childhood catcher thing.
Speaker 1: Is a dad who went to work one day and
Speaker 1: got a phone call. It was in the middle of
Speaker 1: a y two k exercise because everybody thought the world
Speaker 1: was going to come to an end. So where we
Speaker 1: were at bell South practicing make sure all our systems
Speaker 1: were gonna work for the clock changing over. On December
Speaker 1: thirty one to January one, two thousand and I got
Speaker 1: a phone call and it was gone, Yes, she said,
Speaker 1: You've got to get to the hospital. I'm like, what
Speaker 1: are you talking about, UM, she's a killion sick. I
Speaker 1: don't like, Oh my gosh, what isn't She said, well,
Speaker 1: we don't know, but they think it might be cancer. UM.
Speaker 1: And of course took off out of work immediately and
Speaker 1: mcbrin over at Children's Health Care about latter. For boys
Speaker 1: with lukmia, the treatment takes three and a half years
Speaker 1: and for girls it's two and a half years. UM
Speaker 1: and so we started on his treatment, going three times
Speaker 1: a week to the hospital Monday, Wednesday, Friday. I had
Speaker 1: my two year old, another five year old and a
Speaker 1: seven year old UM and basically the whole community UM
Speaker 1: really gathered around us and helped us. Our church family
Speaker 1: cooked his meals, they did our washing, they kept my boys. Um.
Speaker 1: And it was just, you know, a totally different world. Um.
Speaker 1: And we were told that um, you know, leukemia and
Speaker 1: the type of leukemia that he had was very curable. Um.
Speaker 1: And so you know, we were we were hopeful that
Speaker 1: everything was going to be okay eventually. UM. But it
Speaker 1: was hard. It was very hard on him, and of
Speaker 1: course we were just devastated. But you know, we were
Speaker 1: given you know, pretty good news on the day that said,
Speaker 1: it's likely to be the most common form of leukemia
Speaker 1: we cure. You know, at that point they were curing
Speaker 1: like eight to nine percent of cases. So we felt
Speaker 1: pretty good about things at that point. But that's kind
Speaker 1: of how it all started. A call at work and
Speaker 1: a trip to the hospital. The next thing, you knew,
Speaker 1: the next four years or so, we're completely consumed by
Speaker 1: battling this terrible disease. Tell me about killing Oh gosh, okay,
Speaker 1: well hang gonn, I'll show you a picture Ellen. That's him.
Speaker 1: And he was a little monkey he Um. He was
Speaker 1: one of those kids who like, if there was something
Speaker 1: that could go wrong, it would go wrong. So like
Speaker 1: he was always the one that got into trouble and
Speaker 1: because there were twins, like I'd be I would walk
Speaker 1: out of the room and like two seconds later, I
Speaker 1: would hear this little voice going, oh, and I knew
Speaker 1: the minute I heard that that something bad. It happened
Speaker 1: the minute I turned my back. And it was always
Speaker 1: Kellyan right in the middle of it. I mean, if
Speaker 1: there was a if there was a stream, he would
Speaker 1: fall in it. If there was a mud puddle, he
Speaker 1: would step in it. I mean it was he was
Speaker 1: one of those kids. But he had the best sense
Speaker 1: of humor. I mean he was He was just a joy.
Speaker 1: He really was. He was a ball of fire. I'll
Speaker 1: tell you that. It's so different from his other brothers
Speaker 1: who had darker hair and uh killian head blonde hair
Speaker 1: and killian head. Green said. He was just everywhere all
Speaker 1: at once. Uh just the first to join in a party,
Speaker 1: the first to you know, raise his hand, to volunteer
Speaker 1: to do anything, love playing with his level of playing
Speaker 1: with his friends. And he loves sports. I mean, he
Speaker 1: absolutely loves sports. Uh was you know on the baseball team,
Speaker 1: on the basketball team played ball headed um very inspirational
Speaker 1: to see him out there Um, I remember one time
Speaker 1: on the swim team, he actually he actually cried because,
Speaker 1: uh he came in second and he had just finished chemo.
Speaker 1: That so, I mean, that's not a kid he was.
Speaker 1: He just like he just wanted to be an ordinary kid.
Speaker 1: Very competitive, but just just a very loving kid. Love
Speaker 1: to tell jokes. Uh you know, it's just what do
Speaker 1: you call a cow with no legs? Ground beef? So
Speaker 1: that was one of his favorites, you know. So he uh,
Speaker 1: he was just that. It was just a joy to
Speaker 1: be around. He really was. Again. When diagnosed with leukemia December,
Speaker 1: Killian was a month shy of his sixth birthday. There
Speaker 1: were a lot of hard moments. But when we brought
Speaker 1: him home after his initial diagnosis, the doctors, you know,
Speaker 1: put him on chemotherapy and uh, you know, we we
Speaker 1: didn't know much of anything, and because he was so young,
Speaker 1: they actually put him on a lot of liquid medicines, which,
Speaker 1: as you're gonna imagine, just tasted horrible. And he would
Speaker 1: just fight tooth and nail. He did not want to
Speaker 1: take that medicine. It's just it was a battle night
Speaker 1: after night. And this was before you know, the internet
Speaker 1: was what it is today. So that wasn't like they
Speaker 1: were like a bunch of parental groups on there that
Speaker 1: you could turn to for advice. You just had to
Speaker 1: call up people and and talk to them about what worked.
Speaker 1: And finally we found out, you know, you could get
Speaker 1: him to take a pill, and you could go to
Speaker 1: the pharmacy and get actual empty capsules and put the
Speaker 1: medicine inside the capsule. And so that was a huge
Speaker 1: win for us because I didn't think we were going
Speaker 1: to get the medicine in him. I honestly was worried
Speaker 1: that he was going to get high enough dose because
Speaker 1: he was fighting and spitting it out and in tears,
Speaker 1: and we were in tears trying to give him medication
Speaker 1: night after night. So it was a it was a
Speaker 1: big win for us to build to reach that point
Speaker 1: where hey, we can put the stuffs on a capsule
Speaker 1: and he said, I'll swallow a pill. I'll learn how
Speaker 1: to swallow a pill that and he did and that
Speaker 1: made life a lot better. So he went into remission um.
Speaker 1: You know, you have to get them into remission I
Speaker 1: think within the first thirty days, and we got him
Speaker 1: in remission um and that you know, remission doesn't mean
Speaker 1: beating cancer. A lot of people think, oh, thank god intermission. Well,
Speaker 1: that just means the medicine is working basically right, and
Speaker 1: it still means that he's going to have another three
Speaker 1: years of treatment, even after recent remission. UM. So you know,
Speaker 1: so we we carried on with that and uh, but
Speaker 1: we did, you know, get him through that first pretty
Speaker 1: much through that first round of of chemo, and things
Speaker 1: were looking so great, and you know, we started planning
Speaker 1: his recovery party. And the treatment is really awful for
Speaker 1: children because it wasn't designed for them. UM. But we
Speaker 1: got almost all the way through his treatment and we
Speaker 1: only had six months to go, and he was supposed
Speaker 1: to finish treatment on um St Patrick's Day, and so
Speaker 1: being irish, I thought, oh, well that's a good omen um.
Speaker 1: But um, with six months to go, we went for
Speaker 1: a routine blood test and discovered that the leukemia had
Speaker 1: come back worse than ever. UM. And so now our
Speaker 1: next option instead of just chemo, was a bone marrow transplant.
Speaker 1: It's not like the way they portray it in the
Speaker 1: movies where a child gets leukemia and they say, oh, yes,
Speaker 1: a bone martor transplant. That's not what happens. It's usually
Speaker 1: you know, chemo first, and then if that fails, then
Speaker 1: you have to go for a bone mirow transplant. Because
Speaker 1: a bone miro transplant is horrific because they kill off
Speaker 1: your entire immune system in order to put the new
Speaker 1: bone marrow in, and it involves radiation, and it's just
Speaker 1: awful for a child, and they have to be in
Speaker 1: isolation because they have no immune system and so they
Speaker 1: can't die if they get so much as a cold.
Speaker 1: Let me just relay a little bit about how how
Speaker 1: horrible it is for the kids they go through, you know, nauseam.
Speaker 1: They developed mouth sores because the chemo is so powerful.
Speaker 1: Um yeah, you know it affects soft tissues, uh and
Speaker 1: and makes them like you have terrible ulcers and so
Speaker 1: and there's this's almost a cruel joke because one of
Speaker 1: the medicine's, pregnizone, makes you really hungry, and then the kids,
Speaker 1: you know, have these terrible mouth soorce and they can't eat. Um.
Speaker 1: You know. Yeah. I always say that losing your hair
Speaker 1: is the easiest bet you always you can always buy
Speaker 1: a hat. It's all the other effects that are so
Speaker 1: terrible to watch them go through. I had to go
Speaker 1: through this again. With the with the bone marrow transplant
Speaker 1: to get his immune system uh to a point where
Speaker 1: they could give the bone marrow to him. And we
Speaker 1: were extremely fortunate and that his twin brother, Garrett. It
Speaker 1: was a perfect match, although because they were not identical,
Speaker 1: there was no more chance of him being a match
Speaker 1: than a regular sibling. But if they hadn't been identical,
Speaker 1: then they would have both had leukemia. So it was
Speaker 1: one of those weird situations. But Killian went through the transplant.
Speaker 1: And the magic number for bone maritis plants is a
Speaker 1: hundred days post transplants, so if you can get to
Speaker 1: that point, then they say it's been successful. We did it.
Speaker 1: He did it. He got through that bone marrow transplant.
Speaker 1: It was extremely tough on his body, and he got
Speaker 1: out and he responded beautifully to it. And you have
Speaker 1: to get to a hundred days post transplant for it
Speaker 1: to be considered a success. And we were in there
Speaker 1: at ninety days having another routine blood test when they
Speaker 1: called the society, so we need to talk to you.
Speaker 1: And at that point the doctors took us into a
Speaker 1: room and they said, we're really sorry, but he's had
Speaker 1: all the treatment he can have and you need to
Speaker 1: go and make some memories. And I was like, well, what, like,
Speaker 1: there's nothing else you can do, and they were like, well, no,
Speaker 1: he's had all the chemo and radiation and bone marrow transplantment,
Speaker 1: nothing has worked, so we're out of options. And they
Speaker 1: told us that he had relapsed again and that we
Speaker 1: should go make some memories because there was no cure
Speaker 1: at that point for him. And we did. We went
Speaker 1: and made memories. We went to Disney. We had an
Speaker 1: amazing trip with him where he was still healthy enough
Speaker 1: to enjoy it with his brothers and his cousins and
Speaker 1: an extended family. But it was very hard for Granding
Speaker 1: You and I because of course we were we were
Speaker 1: trying to remain happy and positive and pretend this was
Speaker 1: a you know, a trip to celebrate him cure, being
Speaker 1: cured of cancer, when in fact it was a you know,
Speaker 1: our last memory trip for us. We went to Disney World.
Speaker 1: We went on a trip to Disney World with the family,
Speaker 1: and that was one of the hardest things I've ever
Speaker 1: done in my life because we told the boys we
Speaker 1: were celebrating Kellyan, you know, getting through his bone mat
Speaker 1: of transplant, and an actual fact we knew we were
Speaker 1: going because he was dying, and um, we had to
Speaker 1: smile and pretend that everything was great, and that was
Speaker 1: so hard. While we were there, I was doing some
Speaker 1: research because I wasn't ready to give up, and I
Speaker 1: discovered an article about a brand new type of treatment
Speaker 1: called a targeted therapy, which is designed specifically for chemo
Speaker 1: resistant leukemia, which is obviously what Kellyan had. And um,
Speaker 1: the way it worked was it was attracted to the
Speaker 1: proteins that were on the outside of only the cancer cells,
Speaker 1: not on regular cells. And this protein in particular was
Speaker 1: c D twenty two and UM, I knew that Killian
Speaker 1: was c D twenty two positive just from all the
Speaker 1: tests and things that he had to have. And I
Speaker 1: went to our doctor and I said, okay, so I've
Speaker 1: discovered you know, there is this treatment and he said yeah,
Speaker 1: And I said, so give it to Killian And he said, well,
Speaker 1: we can't because it's not actually in treatment. It's still experimental,
Speaker 1: and um, you would have to get special permission from
Speaker 1: the f d. A. Well you never say that to
Speaker 1: a redhead, um, because that was a challenge. And I
Speaker 1: was like, okay. When we got back from Disney and
Speaker 1: GRANDI you know. She was just a warrior. She was
Speaker 1: not ready to give up. Despite the fact that doctors
Speaker 1: had said this was, you know, the end for for treatment.
Speaker 1: She discovered a treatment that had was in was in
Speaker 1: the labs and had not been cleared by the FDA
Speaker 1: for children. I had noticed that one of the doctors
Speaker 1: who was working on this new type of treatment had
Speaker 1: an Irish name, and so I knew an Irish professor
Speaker 1: of microbiology at Trinity College, Dublin, and I called him
Speaker 1: and I said, Okay, I know this is a billion
Speaker 1: to one shot, but do you know this doctor who's
Speaker 1: working on this new drug? And he said, Grania. Not
Speaker 1: only do I know him, he used to be one
Speaker 1: of my students. So I was like, okay, miracle, this
Speaker 1: is it, this is supposed to be. That is just
Speaker 1: too much of a what I call a God studence.
Speaker 1: I don't believe in coincidences. I believe in God studiences.
Speaker 1: And I was able to get touch with him, and
Speaker 1: um he put me in touch with the pediatric oncologist
Speaker 1: at the National Cancer Institute who was had been trying
Speaker 1: to get this drug into a clinical trial for three
Speaker 1: and a half years. And Cillian was the perfect candidate
Speaker 1: because he had that protein on the outside of his
Speaker 1: cancer cells. He had been through every treatment that was available,
Speaker 1: and so he said, yes, I'll try and get you
Speaker 1: special permission from the FDA. We bought a fax machine
Speaker 1: because at that point that was where the technology was,
Speaker 1: and we faxed this doctor every document we could possibly
Speaker 1: lay our hands on to do with Killian, and within
Speaker 1: a week he had got special permission from the FDA
Speaker 1: for Killian to be the first child in the world
Speaker 1: to try this new treatment. We got up to UM Washington,
Speaker 1: d C. Went to Bethesda where the National Cancer Institute is,
Speaker 1: and Killian was the first child in the world to
Speaker 1: get this treatment. And remember them taking us aside and saying,
Speaker 1: we're going to have to do this in the I
Speaker 1: c U because we don't know what's going to happen.
Speaker 1: It could kill him. And they were like, do you
Speaker 1: still want to do this? And I looked at them
Speaker 1: and I said, Um, you know he's dying anyway, right
Speaker 1: And they were like yes, I said, so let's do it.
Speaker 1: Doesn't They were like okay, so um. When they gave
Speaker 1: him the drug, there was about twenty doctors in the
Speaker 1: room and forty nurses and it were. Killian was fast asleep,
Speaker 1: thank god, because he would have freaked out if he'd
Speaker 1: seen all these doctors and nurses. And unfortunately, because he
Speaker 1: was the first child in the world to try this drug,
Speaker 1: they would have needed to give him twice the dose
Speaker 1: that they were allowed to give him by the FDA.
Speaker 1: But the doctor took us aside and said, there is
Speaker 1: a second generation of this drug in the lab, and
Speaker 1: we've tested it on Killian's cancer cells and it would
Speaker 1: be eleven times more effective than this one that we're
Speaker 1: giving him right now. And I said, great, give it
Speaker 1: to him, and he said, Grania, I can't. We don't
Speaker 1: have the money to get it out of the lab
Speaker 1: and into treatment. And at the time, Claim and I
Speaker 1: looked at each other and looked at him and we
Speaker 1: were like, why is he telling us about something that
Speaker 1: could say about our's life, but we can't give it
Speaker 1: to him. It was July two th three, Killy and Owen,
Speaker 1: who was nine at the time, had been fighting cancer
Speaker 1: for almost half his life. So we lost Killian several
Speaker 1: weeks later. But you know, the doctors told us while
Speaker 1: we were there about another drug that was stuck in
Speaker 1: the lab that may have been more effective and may
Speaker 1: have been able to cure killing. And the reason they
Speaker 1: said they couldn't get it to the bedside was lack
Speaker 1: of funding. So it's a bit of a red flag
Speaker 1: foot ball h telling my wife that. So about a
Speaker 1: year later, she decided she was going to start up
Speaker 1: a charity or just raise mine. At that point, she
Speaker 1: just wanted to raise money for childhood cancer, so she
Speaker 1: started thinking about how to do that and created during
Speaker 1: Kids Cancer. It was coming up to his first anniversary,
Speaker 1: and I was sitting with the other three boys, and
Speaker 1: I was trying to explain to them that we shouldn't
Speaker 1: be sad and upset because Kellyan was an angel and
Speaker 1: God had him and he was healthy and happy and
Speaker 1: God was looking after him better than we ever could,
Speaker 1: even though it wasn't what we wanted to happen. And
Speaker 1: I suddenly remembered that drug and the fact that it
Speaker 1: was stuck in the lab and that it could actually
Speaker 1: save other children's lives and stop other families from having
Speaker 1: to go through what we went through. And I just knew,
Speaker 1: absolutely kind of right here that that was why he
Speaker 1: had told us, and that was what I was meant
Speaker 1: to do. I knew that somehow or another, I was
Speaker 1: going to make sure that that drug got out of
Speaker 1: the lab and into treatment, and it was going to
Speaker 1: help other families and not I need that, but I
Speaker 1: knew there must be other drugs like that too. The
Speaker 1: original idea around this was to work with coaches. I
Speaker 1: told you how much Killian loved playing sports, and baseball
Speaker 1: was one of them. And the one of his baseball
Speaker 1: coaches actually had an idea. He said, at the end
Speaker 1: of the season, he told all the moms, he said,
Speaker 1: do not buy me a gift. He said, let's just
Speaker 1: collect the money and let's give it. I'm sorry, Let's
Speaker 1: give it the Children's Healthcare of Atlanta, who are killing illustrated,
Speaker 1: and let's do some good with this money. So we thought,
Speaker 1: what a great idea there. You know, hundreds and hundreds
Speaker 1: of thousands and millions of kids all over the country
Speaker 1: playing sports, and why what you know, do these kids
Speaker 1: really do these coaches need another Starbucks gift card, they
Speaker 1: need another T shirt or anything like that give card? No,
Speaker 1: Why why don't we just convince parents to give their
Speaker 1: money to curing kids cancer. I've never seen so many
Speaker 1: grown men cries. I did that first season when we
Speaker 1: started raising money that way, UM and I used to
Speaker 1: go around to baseball fields and you know, go to
Speaker 1: the presentations to the coaches, and UM, we give them
Speaker 1: the certificate and the T shirt and they just loved it.
Speaker 1: So I thought maybe we would raise five thousand dollars
Speaker 1: that first season, and we ended up raising forty five
Speaker 1: thousand dollars, and so we knew it was a good idea.
Speaker 1: It was that love of sports and that that coaches
Speaker 1: gift that really got a got us off the ground
Speaker 1: and gave us a way to start raising some money
Speaker 1: for childhood cancer research goes. We did not want to
Speaker 1: see other children go through like Killian had gone through.
Speaker 1: I mean, it's it's just the most devastating thing to
Speaker 1: lose a child, but just going through the process of
Speaker 1: watching your child fight cancer and the years that it takes,
Speaker 1: you know, and the isolation and the mouth source and
Speaker 1: all the horrible treatment that they have to go through.
Speaker 1: We didn't want other kids to have to go through that.
Speaker 1: We didn't want other families to have to go through that.
Speaker 1: We wanted to fund research that would find better cures,
Speaker 1: more effective cures, pewer side effects. And I soon realized
Speaker 1: that if I wanted it to go to the research
Speaker 1: that I knew it needed to go to, I was
Speaker 1: going to have to do it myself. I couldn't just
Speaker 1: hand the money over to somebody else. I had to
Speaker 1: make sure it went where I wanted it to go.
Speaker 1: And so the only way I could do that was
Speaker 1: to start my own charity. So officially we became a
Speaker 1: charity in two thousand and five and m basically since
Speaker 1: then we have partnered with many, many amazing people and
Speaker 1: doctors and hospitals and donors, and we have raised over
Speaker 1: twenty three million dollars. As for the doctor who mentioned
Speaker 1: to the Owens the alternate drug stuck in the system
Speaker 1: and in need of financial support. To this day, that
Speaker 1: doctor is. He is now the chairman of our Medical
Speaker 1: Advisory Board. He was the head of pediatric gun coology
Speaker 1: at the National Cancer Institute. He's now at Children's Hospital
Speaker 1: Los Angeles and he heads that cancer clinic up there
Speaker 1: um And he says he doesn't know why he told
Speaker 1: me he would never normally do that. What's his name?
Speaker 1: His name is Dr Alan Wayne, and he and leegh Hellman,
Speaker 1: who was also had a pediatric and collegiate International cancer
Speaker 1: Institute are my two chairman of my medical advisory board.
Speaker 1: Where does Dr grub come in all this? Dr Grapp Okay, well, um,
Speaker 1: he was a few years down the line. I was reading.
Speaker 1: I always try and read about, you know, what's the
Speaker 1: latest research and what's what's working what isn't because I
Speaker 1: feel like I need to know that in order to
Speaker 1: ask people to give me money, because I need to
Speaker 1: know where it's going that it's going to make a difference.
Speaker 1: And um, I read about Dr grab and one of
Speaker 1: my other doctors told me about him too, and I
Speaker 1: did some research on the work he was doing and
Speaker 1: discovered that he'd had a massive, like percentage success rate
Speaker 1: with the children that he had treated with this new
Speaker 1: treatment called car T cell therapy. I itically and another
Speaker 1: one of my good sidences. Cart cell therapy wouldn't exist
Speaker 1: if there hadn't been that first targeted therapy that Killian
Speaker 1: pioneered because it works on the same principle in the
Speaker 1: attaches itself to the proteins that are only on the
Speaker 1: outside of the leukemia cells, not on the healthy cells.
Speaker 1: And um, in Killian's case, at that point, it released
Speaker 1: a toxin that was supposed to kill the cancer cell. Now,
Speaker 1: what they do is they take your own T cells
Speaker 1: from your body. Um, they genetically re engineer them in
Speaker 1: the lab so that they recognize those proteins that are
Speaker 1: only on the cancer cells, not the healthy cells. They
Speaker 1: put the re engineered cells back into the child. They
Speaker 1: don't then need chemo or radiation because their own immune system,
Speaker 1: their T cells will recognize the cancer cells and them. Uh,
Speaker 1: good morning, Dr. Grew up. How are you very well?
Speaker 1: Thank you for thank you for taking this time. Sure,
Speaker 1: what's your sense and perspective of of how you how
Speaker 1: you fit into this into this narrative. I'm a physician
Speaker 1: at Children's Hospital Philadelphia that runs the self therapy and
Speaker 1: transplant service and an expert in a particular kind of
Speaker 1: self therapy called cart and UH, curing kids cancer has
Speaker 1: been uh incredibly instrumental in the work that we do
Speaker 1: research wise to get new self therapies delivered to kids
Speaker 1: with cancer. Uh and so, UM, you know, we can
Speaker 1: get into a lot of details, but the bottom line
Speaker 1: is that, uh, we're moving closer and closer to more
Speaker 1: therapies that are available for kids with leukemia, lymphoma, and
Speaker 1: similar diseases. And this is an area where Curing Kids
Speaker 1: Cancer has been incredibly helpful to us, and that that
Speaker 1: really comes comes down to awareness and funding. Uh yes,
Speaker 1: both of those things, but absolutely funding has been a
Speaker 1: huge part of it. So Gran you Owen has been
Speaker 1: an incredible supporter of our work and the group and
Speaker 1: Curing Kids Cancer and uh um so uh including uh
Speaker 1: uh money that has supported clinical trials that we were
Speaker 1: just waiting to open and needed support forward to be
Speaker 1: able to do that. Um. So uh yeah, they're they're
Speaker 1: an amazing group of people. Talk to me more about
Speaker 1: the Owen family and and and you'r how you got
Speaker 1: to know them and uh and and what's so inspiring
Speaker 1: about them? Well, I mean, uh grind you reached out,
Speaker 1: um kind of out of the blue and it was
Speaker 1: an amazing you know, sort of Christmas season um conversation
Speaker 1: that resulted in one of the first uh grants that
Speaker 1: we got from the organization. And I learned a little
Speaker 1: bit about her son's story and actually there was a
Speaker 1: connection that we made not only around the fact that
Speaker 1: I was working on pediatric sell therapy and had treated
Speaker 1: the first child with leukemia with a sell therapy um,
Speaker 1: but that the I don't want to get too technical
Speaker 1: about this, but the target that we were exploring as
Speaker 1: sort of a second line in this sell therapy was
Speaker 1: something that was initially pioneered in her own son's treatment.
Speaker 1: And so that new target it has a name. That
Speaker 1: name is CD twenty two. It doesn't matter, but uh,
Speaker 1: it was something that had started its life as a
Speaker 1: potential treatment way back before self therapy and at the
Speaker 1: time that her child was being treated and then has
Speaker 1: come full circle into self therapy and being something that
Speaker 1: we've treated a number of kids with successfully. So safe
Speaker 1: to say her motivation was obviously, I want to make
Speaker 1: sure it happened in my son's case where it's affordability
Speaker 1: or access issues, um, doesn't happen to other kids going forward.
Speaker 1: That seems to That's my general understanding of of it.
Speaker 1: Was like her motivation was, I want to try to
Speaker 1: help other families, other kids going forward. Correct, no doubt
Speaker 1: about that. And and you know, I think you raise
Speaker 1: an interesting point, which is affordability and access or a
Speaker 1: key part of this equation, and happy to talk about that.
Speaker 1: But then the step before affordability access is creation. You
Speaker 1: have to make these new therapies and you have to
Speaker 1: apply them to kids, which is often very hard to
Speaker 1: do in the medical market the way it exists right
Speaker 1: now because kids are a smaller market than adults UM
Speaker 1: and so uh, it's really important to have the support
Speaker 1: um of foundations like you're in kids cancer to sort
Speaker 1: of get the ball rolling and to get the data
Speaker 1: together that gets the drug companies interested in these newer
Speaker 1: treatments UM and then you know once you have something
Speaker 1: FDA approved, and the first fd approved sell therapy in
Speaker 1: the in the world was kim Riya, which was the
Speaker 1: treatment that we used for our first patient, Emily Whitehead
Speaker 1: UM that then you get into the access issues, right
Speaker 1: It's it's an expensive therapy. It's offered at centers of excellence.
Speaker 1: You have to be able to get the patients there.
Speaker 1: And that's another area where we've gotten help from Foundations,
Speaker 1: and Curing kids cancer is among them. Where we're able
Speaker 1: to bring families in, pay for their hotel stay while
Speaker 1: they're in the Philadelphia area, pay for their travel to US,
Speaker 1: and to just sort of deal with these access issues
Speaker 1: by helping the families and making it possible to even
Speaker 1: get here. They have had a nineties seven percent success
Speaker 1: rate with this treatment for children who have leukemia, and
Speaker 1: in the beginning it was mostly children who were on
Speaker 1: hospice care, so they've been told, the parents have been
Speaker 1: told there was nothing else that could be done for
Speaker 1: their kids. And then Dr comes along with his new
Speaker 1: Carte cell therapy and says, we've got one more thing
Speaker 1: we can try. And the kids were surviving and I
Speaker 1: called him and I said, We've got a hundred thousand
Speaker 1: dollar grant and I want to give it to you.
Speaker 1: And he said, oh, well, that's amazing because this morning
Speaker 1: I was in my UM meeting and there are four
Speaker 1: children who need treatment, and he said, we don't have
Speaker 1: the money to give it to them. And I said, oh,
Speaker 1: how much does it cost? Thinking he was going to
Speaker 1: say hundreds of thousands of dollars and he said, well,
Speaker 1: it costs about twenty five thousand dollars per child. And
Speaker 1: I said, you're not going to believe this, but I've
Speaker 1: already put a check in the mail to you and
Speaker 1: it's for a hundred thousand dollars. And he was like,
Speaker 1: that is a miracle. Do we feel like we would
Speaker 1: make faster progress in the pediatr oncology world if there
Speaker 1: were more focus both from drug companies and government funders
Speaker 1: on this absolutely. Uh. Do do the private foundations like
Speaker 1: hearing kids cancer fill in UM part of that gap?
Speaker 1: You bet they do? Uh, and they you know, Grintia
Speaker 1: has seems to have a personal instinct for reaching out
Speaker 1: just when you know things are getting a little thin
Speaker 1: and we're like, where were we going to go with
Speaker 1: this next? And then she's like, oh, you want to
Speaker 1: open that trial, let me help you with that. And
Speaker 1: so yes, it is. It is. Uh. One would wish
Speaker 1: that that wasn't the way that it worked, but you know,
Speaker 1: we sure, we sure appreciate it. There's no doubt about that.
Speaker 1: Neither one of us could believe that that timing came
Speaker 1: out so well. But there's been many times since then
Speaker 1: where I've called him and told him about things that
Speaker 1: we wanted to do, and he said, this is the
Speaker 1: perfect time. And so now he's working on a combo
Speaker 1: treatment that there are two proteins on Luking Yoursells nineteen
Speaker 1: and twenty one twenty two Peggy parton and the first
Speaker 1: treatment that they developed, Leoney, attached itself to c D nineteen.
Speaker 1: So now they've developed one that has both UM proteins targeted,
Speaker 1: so c D nineteen and c D twenty two and
Speaker 1: he's hoping that he will be able to say that
Speaker 1: he gets a hundred percent success rate and getting kids
Speaker 1: back into remission. You fight this good fight. What what
Speaker 1: is it about your your passion and motivation and your
Speaker 1: education that has led you to this to this field.
Speaker 1: So UM, you know, the good news about pediatric cancer
Speaker 1: is that many children who are diagnosed with cancer today
Speaker 1: are cured UM three fourths or more. So we're you know,
Speaker 1: we've developed these new therapies. We've had this approach in
Speaker 1: pediatric cancer of putting lots of kids on clinical trials
Speaker 1: and that's um upped the success rates in many cancers,
Speaker 1: not all of them, but many of them. Uh. And
Speaker 1: and leukemia is actually one of them where we we've
Speaker 1: gotten way more successful. UM. But as a guy who
Speaker 1: does bone marrow transplant, I'm seeing the patients who aren't
Speaker 1: doing well right, who have relapsed, who have us disease
Speaker 1: that sometimes isn't under control. And so what motivates me
Speaker 1: is um wanting to do something for those kids. Uh
Speaker 1: and not accepting the fact that we're going to use
Speaker 1: the tools that I had when I was a fellow
Speaker 1: in the nineties. We need to have something completely different.
Speaker 1: And that completely different thing is the engineered self therapies
Speaker 1: that are now available, including this FDA proof therapy called
Speaker 1: Kim Ryan. And you know, we at chop and at
Speaker 1: the University of Pennsylvania, we're uh really leading that whole
Speaker 1: charge toward the first FDA approval. So what motivates me
Speaker 1: is I see what it looks like when it doesn't work, uh,
Speaker 1: and it is completely unacceptable. We're so proud that we
Speaker 1: were able to get funding to him at a critical
Speaker 1: juncture and his and his work so that we were
Speaker 1: able to drive this forward. And now we see its
Speaker 1: saving children's lives. So we're seeing it being adapted for adults.
Speaker 1: And I mean, we went into this thing. If we
Speaker 1: can just save one life, it'll be fantastic. But now
Speaker 1: we're saying life after life after life being saved by
Speaker 1: the research for fund and Steve Groups. A big part
Speaker 1: of that summarize in Layman's terms cell therapy. Are you
Speaker 1: literally taking bad cells out and replacing them with good cells?
Speaker 1: Is that? I mean? Is that so we're taking I
Speaker 1: think what you're saying is is close to right. Um,
Speaker 1: so we're taking good cells out. So we got a
Speaker 1: patient with leukemia. We're taking good cells out, and we
Speaker 1: may take out some leukemia cells, but that doesn't matter, UH.
Speaker 1: And we take those cells out. Those cells are called
Speaker 1: T cells, and T cells are part of the immune system.
Speaker 1: They fight viruses, but they could fight cancer if you
Speaker 1: could just give them a way to find the cancer cells,
Speaker 1: which they can't do. And so what we do is
Speaker 1: we take those cells out of the body. It takes
Speaker 1: a few hours of just filtering the cells out of
Speaker 1: the blood, uh, and then we basically genetically engineer the cells.
Speaker 1: We expose the cells to a virus. The virus changes
Speaker 1: the DNA of the T cell, and then that change
Speaker 1: in the DNA of T cell gives it the instructions
Speaker 1: it needs to go out and find the cancer. And
Speaker 1: once it finds the cancer, T cells are perfectly good
Speaker 1: at killing it. That's what they're for. But they the
Speaker 1: find part didn't work. So what we do is we
Speaker 1: fix the fine part. And what happens so amazing about
Speaker 1: this is if you have patients with a large amount
Speaker 1: of leukemia in their bodies, these T cells will grow
Speaker 1: and grow and grow to a level that is necessary
Speaker 1: to control the disease. So you've got a little disease,
Speaker 1: they grow a little. You've got a lot of disease,
Speaker 1: they grow a lot. And in that situation you can
Speaker 1: get patients with literally pounds of leukemia into remission and
Speaker 1: that that party is astonishing, and that differs. Just to
Speaker 1: be clear, when you give a normal drug, when you
Speaker 1: take something by mouth, when you get something by I V.
Speaker 1: That's all the drug you get and then it goes
Speaker 1: away and then you give the drug again. This is
Speaker 1: a living drug where the cells grow to the level
Speaker 1: needed stay in the body again. Our first patient, Emily Whitehead,
Speaker 1: still has these cells on the hunt in her body
Speaker 1: ten years later and she's been in remission ever since since.
Speaker 1: She's our furthest out patient. Um. So, the theory is
Speaker 1: really teach your your immune system to do something it
Speaker 1: didn't know how to do. The tools we have to
Speaker 1: do that are so much more powerful than they were
Speaker 1: even you know, twenty years ago. So to go back
Speaker 1: to my attempt at summarizing, you're actually taking out good cells,
Speaker 1: educating them, giving them their master's degree in finding cancer cells,
Speaker 1: putting it back in and say you know, go go go,
Speaker 1: go teach the masses right exactly, and and you you know,
Speaker 1: it's like if you could imagine an army that if
Speaker 1: it accounts encounters another army that's bigger than it is,
Speaker 1: decides to grow. That's what t cells can do. And
Speaker 1: so you're your your summary is perfect. That's exactly what
Speaker 1: happens that that. I mean, it makes It gives me chill,
Speaker 1: It gives me hope, it gives me, you know, borderline
Speaker 1: brings it, you know. I mean if I could get
Speaker 1: a tear if I really focused on because it's like
Speaker 1: this is this is astounding. I mean, this, this has
Speaker 1: got to you know, for you in this field and
Speaker 1: in this fight on the front lines. That gives you
Speaker 1: a lot of hope. It does, it absolutely does. But
Speaker 1: let me be honest with you and also tell you
Speaker 1: what's missing. So where the hope is is all in
Speaker 1: blood cancers, So leukemia, lymphoma, mi aloma, all of these
Speaker 1: blood cancers. We've had amazing results both in adults and
Speaker 1: kids across multiple different diagnoses. Where you want this to work,
Speaker 1: especially for adult patients is solid tumors like breast cancer,
Speaker 1: lung cancer, pancreas cancer. There we don't have the recipe
Speaker 1: yet and so we're we're waiting for that sort of
Speaker 1: transformative type of result in those uh more common adults
Speaker 1: solid tumors, and that would change the whole cancer world
Speaker 1: as it is. We've changed the look for blood cancer
Speaker 1: patients across the age spectrum and it's an amazing result.
Speaker 1: But you know, that's what we're missing, is that recipe
Speaker 1: for the solid tumors. I appreciate that, that perspective and
Speaker 1: the reality. UM. I also appreciate the fact that without
Speaker 1: people like the Owen family, without them, you know, like
Speaker 1: I still I too, said to grind you. You know,
Speaker 1: like if I lost my child, I'm not sure I
Speaker 1: would leave a room. You know, I just sucked my
Speaker 1: thumb and curl up in a ball and and and
Speaker 1: wallow in and misery. Um for her to get up
Speaker 1: off that off that bed of of sadness and do
Speaker 1: something about it and get to million raised and counting
Speaker 1: and and and connect with people like yourself and support
Speaker 1: the cause. You know what we we we we wouldn't
Speaker 1: be where we are today. So I appreciate everybody involved here. Yeah. No,
Speaker 1: she's in Dole and she's had such a delight to
Speaker 1: talk to. She gets all of this, UM. She has
Speaker 1: incredibly sophisticated understanding, but she also has great instincts for
Speaker 1: what isn't isn't gonna work? Uh, and that I don't
Speaker 1: you can't teach somebody that they just got it or
Speaker 1: they don't. Well, that's that's the power of a mother, right,
Speaker 1: Like that's when you know God knows no fury like
Speaker 1: a pistol. Right. Um, well, thank you so much for
Speaker 1: your time, so happy to do it, so thanks for
Speaker 1: the time. I mean, you're literally curing kids cancer. Yes, yes,
Speaker 1: I know. It gives me goose bumps when I talk
Speaker 1: about it because I sat at my kitchen table thinking
Speaker 1: if I could just say one child, like Killian, if
Speaker 1: I could just say one child, I would be happy.
Speaker 1: And now I know that we've managed to save hundreds
Speaker 1: of children, and we've given them back to their parents
Speaker 1: when they've been told there's no hope. I mean that
Speaker 1: to me is you know, if if if I joined
Speaker 1: Killian tomorrow and I get to see my angel again,
Speaker 1: it will all be worth it. Um. But yeah, there
Speaker 1: have been many times when I felt like giving up.
Speaker 1: But doctors like Dr Grupp are just so dedicated and
Speaker 1: so amazing. They're such amazing people and they love They
Speaker 1: love the fact that we're so interested in what they're doing,
Speaker 1: and we we don't just hand over a check. We
Speaker 1: want to know how it works and why it works,
Speaker 1: and you know, so that we can tell other people
Speaker 1: what they're doing, because it is truly amazing. I mean,
Speaker 1: it's it's the It was the beginning of immunotherapy. That
Speaker 1: is what immunotherapy is based on. And you know, to
Speaker 1: think that we had a teeny tiny little part of
Speaker 1: that is just astonishing to me, miraculous. So immunotherapy hits
Speaker 1: close to home for me. My mother in law almost
Speaker 1: a year ago was diagnosed with melanoma on the lung,
Speaker 1: very rare and in in an operable spot, and after
Speaker 1: eight treatments of immunotherapy through a port in her chest,
Speaker 1: she was recently told by two doctors that she's now
Speaker 1: cancer free. Back to Grania Owen, who's the first to
Speaker 1: admit that she's not able to do what she does
Speaker 1: without the support of so many others. We are the
Speaker 1: charity of choice of me Comb Car Auctions, and they
Speaker 1: are the largest classical muscle car auction house in the world.
Speaker 1: They adopted us as their charity eleven years ago and
Speaker 1: when they adopted us. It was me raising money full
Speaker 1: time and two ladies helping me part time, and yet
Speaker 1: Dana Maecam, who ran a multimillion dollar company at that point,
Speaker 1: was willing to partner with me because he believed in
Speaker 1: what I was doing. And since then they have helped
Speaker 1: us raise eleven million dollars. And I were at the
Speaker 1: last three auctions I have been at, and I go
Speaker 1: to all of the car auctions. I have met people
Speaker 1: who have told me about children who are on treatments
Speaker 1: that we have helped fund, and the chances of that
Speaker 1: happening are slim, I would have thought. So it must
Speaker 1: be out It must be helping, It must be making
Speaker 1: a difference out there for more children than I can
Speaker 1: possibly realize, because why you know the fact that these
Speaker 1: people are at me coom auctions and they hear me
Speaker 1: speak and they tell me about the child that they
Speaker 1: are related to or whatever you know or they know,
Speaker 1: and then I get to find out that it's something
Speaker 1: that we funded that they are being treated with and
Speaker 1: that is helping to save their lives. I mean that
Speaker 1: what are the chances of that? I don't know. I
Speaker 1: don't know, but it must be making a difference where
Speaker 1: does golf fit into all this? Oh gosh, in all
Speaker 1: sorts of ways. Um. First of all, we started our
Speaker 1: golf tournament. I think it was seventeen. I think this
Speaker 1: is our seventeenth golf tournament. I may have that wrong. UM,
Speaker 1: but UM we started out with a T and T
Speaker 1: being the UM host for the golf tournament. And UM
Speaker 1: it has grown bigger and bigger every year. And UM
Speaker 1: at the beginning there again that was something that Lee
Speaker 1: Corso would always come to speak at. And UM we've
Speaker 1: had some amazing people come along, UM join in and
Speaker 1: it's gotten bigger and bigger, and UM this year we
Speaker 1: are sold out already. We were sold out a couple
Speaker 1: of months, well about a month ago. UM. And it's
Speaker 1: not until October. UM it's at Lakewood in Dallas. UM
Speaker 1: this year. And IBM and a company called Technahindra are
Speaker 1: two of our big sponsors. And IBM is amazing. They've
Speaker 1: been fantastic sponsors. And UM it I mean it has
Speaker 1: raised several million dollars all by itself. We raise at
Speaker 1: least three or four hundred thousand dollars with it every
Speaker 1: year and it has been as much as five fifty
Speaker 1: thousand dollars in a year, so UM, it's a huge
Speaker 1: It is by far our biggest fundraising event. UM. And
Speaker 1: the companies come back year after year and sponsor and um.
Speaker 1: You know, we've had some people who have been with
Speaker 1: us the whole time and that's to me unbelievable that
Speaker 1: they are that dedicated. And we talk about what we do.
Speaker 1: We have at dinner the night before the golf tournament
Speaker 1: of the i P dinner and we make a point
Speaker 1: of explaining to people exactly what it is we do
Speaker 1: and why we do it. And they love that because
Speaker 1: it gives it some meaning for them. They're not just
Speaker 1: you know, enjoying themselves playing golf, although hopefully they do
Speaker 1: that too, but you know, when they donate money, they
Speaker 1: know that it's really making a difference for these kids
Speaker 1: and that means something to them, and that's why they
Speaker 1: come back every year. Matt Nie Smith is a PGA
Speaker 1: Tour player who finished the season three in the FedEx
Speaker 1: Cup standings. A graduate of the University of South Carolina
Speaker 1: in twenty sixteen, he joined the PGA Tour in His
Speaker 1: best finished last year was a T three at the
Speaker 1: Valspark Championship. He made twenty cuts his wife, Abigail, who
Speaker 1: he proposed to on the eighteenth green of the Harbor
Speaker 1: Town Golf Links, also graduated from USC and used to
Speaker 1: work for Grannia Owen at Carrying Kids Cancer. Nie Smith
Speaker 1: has the logo on his bag, and they both remained
Speaker 1: very involved in the charity and specifically the golf tournament,
Speaker 1: which will be held on October three at Lakewood Country
Speaker 1: Club in Dallas. Here's Nie Smith on how and why
Speaker 1: he got involved. The coach of South Carolina, where I
Speaker 1: went to school, had leukemia as well, so right when
Speaker 1: I was getting recruited, um, he was diagnosed with leukemia
Speaker 1: and ended up. I mean he's been in recession now
Speaker 1: for almost ten for ten years or so probably so.
Speaker 1: Granna and him knew each other from the fire truck
Speaker 1: pull and stuff like that. So I went up started
Speaker 1: playing when I was in school, right and I got
Speaker 1: out of school, me and him, we're on a team together,
Speaker 1: and that was my first introduction to playing. Everybody thought
Speaker 1: that was pretty unfair, so I thought it was relatively
Speaker 1: unfair as well. So I lost the first year, we
Speaker 1: won the second year, and then after we won, I
Speaker 1: was like, Okay, I'll find a new spot I'll find
Speaker 1: another way to contribute. So um, this year we did.
Speaker 1: I played, uh god, I had probably thirty six groups
Speaker 1: or something like that. They had like thirty six groups,
Speaker 1: so I did. Um, they could pay me fifty bucks,
Speaker 1: they could pay for me to hit a shot for
Speaker 1: their group, and if anybody got it inside me, I
Speaker 1: matched the donation as well. So just trying to find
Speaker 1: ways to help people kind of I don't know, get
Speaker 1: their foot in the door. And then also looking for
Speaker 1: any way where I can help in our presence and
Speaker 1: just me being there or trying to donate as well.
Speaker 1: I mean we still we donate a couple of times
Speaker 1: a year, and just trying to help out any way
Speaker 1: I possibly can and it's your yeah, and we got
Speaker 1: it on the golf bag. Having worked closely with Grania
Speaker 1: and curing kids cancer for so many years. Here's Abigail
Speaker 1: Nei Smith on watching Grana in action. She is so
Speaker 1: focused and knows what exactly is needed to see things
Speaker 1: progress and the things I've learned from her just sharing um,
Speaker 1: going through different reports and articles that she'll share with
Speaker 1: us um about upcoming research. I mean it's just amazing,
Speaker 1: but you know, knowing her personal story and how you
Speaker 1: know she was relentless and even in any health journey
Speaker 1: that you are your advocate, your you are it and
Speaker 1: knowing that, you know, she didn't just stop when Killean
Speaker 1: was diagnosed. She kept going and looking for new things.
Speaker 1: And she does that all the time with c k C.
Speaker 1: She's always looking it new things, going out, talking to
Speaker 1: different doctors, seeing what's going on. And it's just amazing
Speaker 1: because she is relentless and works tirelessly to make sure
Speaker 1: that Curing Kids Cancer is funding the best projects out there.
Speaker 1: You know, obviously the golf tournament is sold out, but
Speaker 1: how can how can people who hear this story and
Speaker 1: feel inclined to participate or support, how can they? How
Speaker 1: can they do that? We've got lots of other events,
Speaker 1: not just the golf tournament, so UM, you know, people
Speaker 1: can participate in the events, they can volunteer to help
Speaker 1: with them. UM. We have a golf tournament in Atlanta
Speaker 1: as well. UM that's in the spring. And UM we
Speaker 1: have all sorts of other fundraising events both in well,
Speaker 1: actually we have them in South Carolina and Atlanta and
Speaker 1: here in Dallas. UM and also make them car auctions. UM,
Speaker 1: like has said, they stop the auction every day and
Speaker 1: let me speak about the charity. And people can donate,
Speaker 1: they can buy, well, they can bid on a neon
Speaker 1: signed that mecomb gives to the highest bidder, so it's
Speaker 1: a gift from me Comb, but the bidder is making
Speaker 1: a donation to Curing Kids Cancer. So, um, you know,
Speaker 1: there are multiple ways. Just go to Curing Kids Cancer
Speaker 1: dot org and you will see lots of different ways
Speaker 1: that you can help support us. Just make a donation.
Speaker 1: I mean, coaches, Curing Kids Cancer is still going. So
Speaker 1: if you've got a child in sports, you can support
Speaker 1: us that way. Um. Just you know, pretty much anyway
Speaker 1: you can think of people who have employee giving, they
Speaker 1: can help us because we're registered. We're a full five O,
Speaker 1: one C three um. So yeah, lots and lots of
Speaker 1: different ways. Amazon Smile is one of the big days
Speaker 1: that people can help us with it making absolutely they
Speaker 1: don't even have to make a donation. They can just
Speaker 1: do their regular shopping on Amazon and we are listed
Speaker 1: as one of the charities for Amazon Smile and we
Speaker 1: get a percentage of everything that they buy from Amazon,
Speaker 1: and it's a donation from Amazon, so they don't even
Speaker 1: spend any extra money. Um, very easy way to help.
Speaker 1: What about Lee Corso? Lee? Oh my gosh, Lee was amazing.
Speaker 1: Clay Clay works for A T and T and they
Speaker 1: were sponsoring the College Football Hall of Fame, a kick
Speaker 1: off lunch that they used to do every year in
Speaker 1: Atlanta for the college football season, and Lee was obviously
Speaker 1: the main speaker, but Clay was the representative for A
Speaker 1: T and T, and right he was right introducing Lee,
Speaker 1: and right before he did that, he mentioned charity and said, Okay,
Speaker 1: this is my thirty second elevator speech. We started charity
Speaker 1: because we lost one of our kids and blah blah.
Speaker 1: And as he was coming off, Lee grabbed him and said,
Speaker 1: let me know what I can do to help, and
Speaker 1: Clay looked at him and he said, no, I mean it.
Speaker 1: I feel like I'm supposed to help you. He's everything
Speaker 1: you know I hope that he's going to be because
Speaker 1: he was just so positive and inspirational and you know,
Speaker 1: always makes time to to do whatever you want him
Speaker 1: to do, whether they're shooting a public service announcement, are
Speaker 1: coming to a gala. He's come for many golf tournaments
Speaker 1: over the years. You know. Unfortunately, a couple of years
Speaker 1: ago he did have a stroke, but he used to
Speaker 1: used to come to the golf tournaments regularly and play,
Speaker 1: and it was such a delight to have him at
Speaker 1: the at the golf tournaments and he would do you
Speaker 1: know Q and as with the golfers, who would talk about,
Speaker 1: you know, the college football sea and it was often
Speaker 1: to the fall when we'd uh, we do these things
Speaker 1: and they just couldn't get enough of Lee. But he's
Speaker 1: he's been a good friend, always there and he always
Speaker 1: ends every conversation the same way, what else can I
Speaker 1: do for you? And you know, you just gotta love
Speaker 1: that guy. He's just just tremendous. Mr. Of course, so
Speaker 1: he Matt, thank you for doing this, gay mad Yeah,
Speaker 1: well it's it's it's an honor to be a part
Speaker 1: of small part of this story. Thank you for doing it.
Speaker 1: It's an honor to be talking to you, sir. I
Speaker 1: appreciate all that you've you've ever done, and all the
Speaker 1: entertainment you've brought me in my life. Thank you, thank you.
Speaker 1: You're welcome. You're welcome, my friend. Curing kids cancer? What
Speaker 1: does it mean to you? Wellly fifteen years ago I
Speaker 1: met Clay Owen and when he's making a speech in Atlanta,
Speaker 1: and he talked about he and his wife party lost
Speaker 1: a nine year old son, Killian Killian to life land leukemium,
Speaker 1: and I was so touched I saw it. I said
Speaker 1: to myself, I gotta be involved in this guy. This
Speaker 1: guy is too too good to read too. So I
Speaker 1: walk up after the stage, I grabbed him and I said,
Speaker 1: how can I help you? Know you hear the words
Speaker 1: kid and cancer. How do you not help a program
Speaker 1: based on making sure that kids don't die from cancer? Well,
Speaker 1: a number one thing is you've got to believe in it.
Speaker 1: When it is, the kids and cancer don't go together,
Speaker 1: so you gotta do everything in their power to keep
Speaker 1: that from happening. And then when they, like God forbid,
Speaker 1: that does happen to him, they've got to have someplace
Speaker 1: they go to help cure them. Well, you have a
Speaker 1: big voice, you have a big following, you have a
Speaker 1: big network, you have a big fan base. So for
Speaker 1: someone like you to get involved in something like this,
Speaker 1: it matters to somebody like the Owen family. Well, another thing,
Speaker 1: in case somebody's watching us, Curing Kids Cancer DOT or
Speaker 1: Curing Kids cancer DOT ring is the way they can
Speaker 1: make donations. I try to do as much as I
Speaker 1: can and help them, but I did related to me
Speaker 1: as much help as it as they can get. Lee
Speaker 1: Corso is eighty eight years old. He's been a part
Speaker 1: of the College Game Day since its inception in and
Speaker 1: he's famous for wearing the head gear of the mascot
Speaker 1: associated with the team that he's picking to win the
Speaker 1: big Game. He's back on the desk this year for
Speaker 1: a thirty sixth season, flanked by Rhes Davis, Kirk, Herbstreet
Speaker 1: and Desmond Howard. But I'm still working. We are. You're
Speaker 1: an inspiration. You're an inspiration. Keep going and uh and
Speaker 1: keep doing what you're doing and keep bringing smiles to
Speaker 1: our faces. We appreciate you, sir. Thank you very much.
Speaker 1: Curing Kids Cancer dot org. So, as we get to
Speaker 1: the end of this podcast, some final reflections first, I'd
Speaker 1: say my biggest takeaway is the difference one family can
Speaker 1: have on making sure so many other kids and families
Speaker 1: don't have to go through what they've gone through. It's
Speaker 1: all so powerful, inspiring and impactful. I was really touched
Speaker 1: by how emotional it is for them still to this day,
Speaker 1: almost twenty years later. Here's clay. It's never natural to lose,
Speaker 1: to lose your child, that's for sure, no matter what
Speaker 1: the cause. And uh, you know that that whole just
Speaker 1: remains there, and it's I'm afraid it's a bit like
Speaker 1: an open sore. It's always there, you know. Does it
Speaker 1: get easier, yes, it gets easier. Um, But as you
Speaker 1: can tell, just those memories never leave you, those feelings
Speaker 1: never leave you. The sense of loss will always be there,
Speaker 1: I think, no matter how old I could. Oh, but
Speaker 1: we've been very blessed as a family and that we've
Speaker 1: always stayed together. Were from a close um. Everybody has
Speaker 1: pitched him with the efforts around here and gets cancer
Speaker 1: has just been a part of our lives, um, you know,
Speaker 1: day after day, year after year, and and Grania never
Speaker 1: gives up. I mean she just really never gives up.
Speaker 1: I have my regular, you know job as a as
Speaker 1: a pr guy at a T and T. But she
Speaker 1: goes into the arena every week every day and she, uh,
Speaker 1: she slays the dragons. Tell any person who has a
Speaker 1: child to think to lose that child. For me, I
Speaker 1: don't'm not sure that I would be able to go
Speaker 1: on let alone, you know, be able to do what
Speaker 1: you've done, what you're still doing to try to make
Speaker 1: a difference. I I questioned my own ability and strength
Speaker 1: and resolve to be able to sort of get up
Speaker 1: and do something about it, as opposed to wallowing in
Speaker 1: your own sort of loss, which is totally understandable. I
Speaker 1: mean totally understandable. But for you to now I have
Speaker 1: done what you've done and continue to do is just
Speaker 1: so inspiring, honestly. I The thing is that I did
Speaker 1: not have the luxury of feeling sorry for myself because
Speaker 1: that would have been way too selfish because I had
Speaker 1: three other boys that needed me, and they saved me
Speaker 1: from myself. Um it was trying to humphort them, was
Speaker 1: you know? The first anniversary was when I realized that
Speaker 1: I had a purpose, I had something that I just
Speaker 1: was absolutely convicted that that was what I was supposed
Speaker 1: to do. I just I can't explain it to you
Speaker 1: any simpler than it was. It was a feeling like
Speaker 1: right in the center of me knowing that that was
Speaker 1: what I was supposed to go and do. And the
Speaker 1: one thing that Kellyan could not stand when he was
Speaker 1: sick was me getting upset If I cried, he lost it.
Speaker 1: And so I knew that I couldn't. I had spent
Speaker 1: a year. I really was depressed. I was, I was sad,
Speaker 1: I was. I was angry. I didn't understand why it
Speaker 1: had happened, and other people's children were being better and
Speaker 1: mine didn't, And you know it, I was. I was
Speaker 1: very angry. I was angry at God. And I think
Speaker 1: sitting down with my boys and trying to explain to
Speaker 1: them why it had happened, and that, you know, not
Speaker 1: necessarily why it had happened, but that Kellyan was was okay.
Speaker 1: He was better now, he was being looked after, better
Speaker 1: than we ever could look after him. And I knew
Speaker 1: he was an angel. I just knew it. And I
Speaker 1: think that like kicked me out of my self pity,
Speaker 1: and it made me realize that Kellyan would want me
Speaker 1: to get off my ass and do something. Do you
Speaker 1: think Killan would be proud of you? Oh? Oh, I
Speaker 1: don't know. I think I think he would be cheering me.
Speaker 1: I know he cheers me on. He tells me to
Speaker 1: kick our all the time. UM. So I'm sorry you'll
Speaker 1: probably have to edit that out now, aren't you. Um?
Speaker 1: But yes, he's he is if he was such a happy,
Speaker 1: determined little chap that I know he's up there cheering
Speaker 1: us on all the time, and my God, studences happened
Speaker 1: because of him. I'm convinced of that. We've had so
Speaker 1: many things happen that have helped us along the way,
Speaker 1: and we've been so blessed with the with the people
Speaker 1: who have helped us along the way that I know
Speaker 1: that that's because he's up there watching overs. He's our
Speaker 1: guardian angel. How old are up your boys now? Oh? Gosh, okay,
Speaker 1: so my eldest is now thirty. Um, Killian's twin is
Speaker 1: twenty eight and my baby is twenty five? And do
Speaker 1: you have any grandkids or what's this status? Well yet not, yeah,
Speaker 1: but I am looking forward to that. I wish they'd
Speaker 1: hurry up. But don't tell him. I said that. Do
Speaker 1: you know the name Emily Whitehead? I do, so. Apparently
Speaker 1: she is she is the first, first, the first one
Speaker 1: to really get this this treatment she is, she's got
Speaker 1: and I think it's basically because of what started with
Speaker 1: Killian ended up becoming the first treatment for Emily, who's now,
Speaker 1: you know, living, the first one to successfully be treated.
Speaker 1: Family's hell, she's she's basically on her death Betton, Yeah,
Speaker 1: the treatments, you know what. Hours days later, she's like
Speaker 1: feeling better. I mean, truly her uncle. I'll leave you
Speaker 1: with this. In May, Emily Whitehead and her family celebrated
Speaker 1: ten years of being cancer free and playing for you
Speaker 1: Now a short story on Emily produced and distributed by
Speaker 1: the Children's Hospital of Philadelphia. You'll hear from Emily and
Speaker 1: her parents Tom and Carry, and you'll hear again from
Speaker 1: Dr Grupp. It's definitely a blessing that I don't remember
Speaker 1: what happened during that time. I really only remember like
Speaker 1: the fun things like playing air hockey with my dad
Speaker 1: or doing things like that. So I mean occasionally I'll
Speaker 1: have to ask, like, when did this happen? Or when
Speaker 1: did we do this? Because I'm sure that my parents
Speaker 1: remember everything. Emily was diagnosed when she was five years
Speaker 1: old with acute lymphoblastic leukemia, and they told us that
Speaker 1: it's the most common type of childhood cancer and also
Speaker 1: the most treatable. But once you relapse, and relapse more
Speaker 1: than once like Emily did, there are fewer options to
Speaker 1: treat that. I got to the point to where they said, here,
Speaker 1: we don't have any more options for her and um,
Speaker 1: we think it's time for you to take her home
Speaker 1: and she'll have a couple of weeks left. We just
Speaker 1: looked at each other and said we have to call TOP.
Speaker 1: At that point in time, her treating doctors are saying
Speaker 1: the only option for a patient in this situation is hospice.
Speaker 1: Family didn't want that answer, and by an amazing series
Speaker 1: of events, this Carte trial opened at the exact moment
Speaker 1: that she needed it. We know how close we were
Speaker 1: to losing her, but finding something outside the box that
Speaker 1: was a little bit different gave us hope. Dr group
Speaker 1: was up front saying, we don't know what's going to happen,
Speaker 1: but we knew that we were surrounded by a great
Speaker 1: team who just wanted to help Emily, and um, you know,
Speaker 1: if we try this and it doesn't work, we know
Speaker 1: that we did try everything that was out there. We
Speaker 1: did everything we possibly could over the next twenty four hours.
Speaker 1: That was the scariest part of her treatment. Those cells
Speaker 1: killing the cancer so fast overwhelmed her system and things
Speaker 1: were just kept getting worse. She got so sick that
Speaker 1: we didn't think she was going to make it. We
Speaker 1: identified a number of these proteins that were unbelievably high,
Speaker 1: but one of them was actually a protein that we
Speaker 1: had a drug for. We gave her that drug and
Speaker 1: that changed everything. She won't come actually on her seventh
Speaker 1: birthday on May second of two thousand and twelve, and
Speaker 1: then they tested her. Doctor Grupp said to me, this
Speaker 1: is amazing. We don't see any cancer. You know. We
Speaker 1: just thought, let's see what happened, and then it just
Speaker 1: this was so exciting within the field of cancer therapy.
Speaker 1: I feel like her experience with cart has in some
Speaker 1: ways changed the world. We learned that we could do
Speaker 1: this in kids. We learned how to control the toxicity.
Speaker 1: We learned that we could skip bone arrow transplants. I
Speaker 1: always like to thank the team at TOP. Without them,
Speaker 1: I wouldn't be here and having the opportunity to leave
Speaker 1: the hospital and come home and just live a normal
Speaker 1: life and have things like going to college or getting
Speaker 1: my license. It's so important to families who have had
Speaker 1: to go through cancer treatment. So I always like to
Speaker 1: tell families and children right now who are in treatment
Speaker 1: that it is really important to never give up and
Speaker 1: to always keep believing in yourself and in the words
Speaker 1: of my dad, to find something to smile about every day.
Speaker 1: Just finding that little ray of hope can really help
Speaker 1: you through some hard times. Do I believe Emily's cured?
Speaker 1: Do I believe the other children who are five, six, seven, eight,
Speaker 1: nine years out from their therapy are cured. I believe
Speaker 1: they are