WEBVTT - Slaying The Dragon They Call Cancer 0:00:02.800 --> 0:00:07.760 I mean you're literally curing kids cancer. Yes, yes, I know. 0:00:08.160 --> 0:00:10.400 It gives me goose bumps when I talk about it, 0:00:10.480 --> 0:00:15.400 because I sat at my kitchen table thinking if I 0:00:15.400 --> 0:00:18.800 could just save one child like Killian, if I could 0:00:18.800 --> 0:00:22.759 just save one child, I would be happy. And now 0:00:22.800 --> 0:00:25.760 I know that we've managed to save hundreds of children, 0:00:26.000 --> 0:00:28.960 and we've given them back to their parents when they've 0:00:28.960 --> 0:00:32.440 been told there's no hope. I mean that to me 0:00:32.840 --> 0:00:38.239 is you know, if if if I joined Killian tomorrow 0:00:38.560 --> 0:00:41.360 and I get to see my angel again, it will 0:00:41.400 --> 0:00:53.040 all be worth it. Another log on the fire here 0:00:54.080 --> 0:01:04.720 give a time. Welcome to the fire pit with Matt Janella. 0:01:07.560 --> 0:01:12.440 Kids cancer two words that should never exist in the 0:01:12.520 --> 0:01:18.600 same sentence, and yet after accidents, cancer is the second 0:01:18.680 --> 0:01:21.600 leading cause of death and children ages one to fourteen. 0:01:22.959 --> 0:01:26.960 According to the American Cancer Society, about ten thousand children 0:01:26.959 --> 0:01:33.119 will be diagnosed with cancer. In of those diagnosed will 0:01:33.240 --> 0:01:38.000 live five years or more. In the seventies, the five 0:01:38.080 --> 0:01:42.880 year survival rate was fifty eight percent. So yes, there 0:01:43.040 --> 0:01:47.240 is significant progress, and that in large part is because 0:01:47.280 --> 0:01:51.240 of individuals like gran Owen you heard in the intro, 0:01:51.640 --> 0:01:54.640 who's doing everything in her power to raise money and 0:01:54.680 --> 0:01:59.480 then connect those resources to the right doctors, scientists, and 0:01:59.600 --> 0:02:01.720 family who are on the front lines of the fight. 0:02:03.280 --> 0:02:06.360 In this podcast, you'll hear a lot more about Grania Owen. 0:02:07.000 --> 0:02:10.160 You'll meet Clay, her loyal and loving husband. You'll hear 0:02:10.200 --> 0:02:13.960 from one of the leading pediatric oncologists, and you'll hear 0:02:14.000 --> 0:02:16.639 the story of the first pediatric patient in the world 0:02:16.880 --> 0:02:21.600 to receive cart Sell therapy, Emily Whitehead, is now ten 0:02:21.720 --> 0:02:26.520 years cancer free. Is this a golf story, Not really, 0:02:27.280 --> 0:02:29.959 although golf and golfers have played a big part in 0:02:30.000 --> 0:02:33.280 the raising of the funds being used to help cure 0:02:33.360 --> 0:02:37.359 Kids Cancer. You'll hear from a PGA Tour player who 0:02:37.360 --> 0:02:40.760 has the Curing Kids Cancer logo on his bag, and 0:02:40.800 --> 0:02:43.720 you'll hear from a major sports personality who has spent 0:02:43.800 --> 0:02:48.000 over fifteen years doing everything he can to help this cause. 0:02:49.080 --> 0:02:51.440 This all started for me because I received a direct 0:02:51.520 --> 0:02:54.360 message from a long time Twitter follower and now friend, 0:02:54.440 --> 0:02:58.320 Scott Ford, a k a AT fan of Rocky Top, 0:02:58.400 --> 0:03:00.800 who was reaching out and asking if I'd be interested 0:03:00.840 --> 0:03:04.000 in playing in a golf tournament in October. The benefiting 0:03:04.080 --> 0:03:07.880 charity was Crying Kids Cancer and if I was interested, 0:03:08.240 --> 0:03:12.560 he'd put me in contact with the executive team. Well, 0:03:12.560 --> 0:03:14.520 I have kids, but you don't need to be a 0:03:14.560 --> 0:03:17.680 parent to want to help any cause. That's soul focus 0:03:17.800 --> 0:03:21.440 is to cure kids cancer. And after meeting and talking 0:03:21.440 --> 0:03:24.760 to Grania and Clay Owen and listening to their heartbreaking 0:03:24.800 --> 0:03:29.480 and yet also incredibly inspiring story, I decided to interview 0:03:29.520 --> 0:03:33.480 them for this podcast. It's worth noting that I wouldn't 0:03:33.480 --> 0:03:36.320 be doing this without the support of companies like Link Soul, 0:03:37.040 --> 0:03:41.680 Dormy Workshop, and Part Points. The fire Pit podcast is 0:03:41.720 --> 0:03:45.600 produced by Alex Upeggy and the music is by Joe Horrowitz. 0:03:47.000 --> 0:03:49.800 Before we get started, a special thank you to the 0:03:49.880 --> 0:03:52.920 Owen family, not only for what they're doing for the 0:03:52.920 --> 0:03:56.600 greater good, but for their willingness to share their emotional 0:03:56.640 --> 0:04:00.560 story with us. I warn you it's a sad story, 0:04:00.960 --> 0:04:07.960 but I can also promise an uplifting, an incredibly inspiring ending. Okay, Well, 0:04:08.040 --> 0:04:13.000 I am Granya Owen and Um. I have four boys, 0:04:13.480 --> 0:04:18.240 so first and foremost, I'm a mom. Um. I was 0:04:18.279 --> 0:04:23.039 born in England, moved here about twenty five years ago 0:04:23.680 --> 0:04:26.599 to the States, lived in Atlanta for a long time, 0:04:26.760 --> 0:04:30.680 and moved to Dallas about four years ago. Um, but 0:04:31.920 --> 0:04:34.280 I used to work for the London Stock Exchange when 0:04:34.279 --> 0:04:38.240 I lived in England, and I couldn't have imagined my 0:04:38.320 --> 0:04:43.160 life going in a more different direction than to end 0:04:43.240 --> 0:04:49.040 up running a charity. And that is exactly what has happened. 0:04:49.200 --> 0:04:55.760 So my life has changed dramatically from what I had planned, 0:04:55.839 --> 0:04:59.880 or thought, or ever imagined it would be. But then 0:05:00.240 --> 0:05:04.119 that's kind of what happens in life, isn't it. It 0:05:04.320 --> 0:05:12.560 was December, and um, I have to I have to 0:05:12.560 --> 0:05:14.719 tell you a little, a little story first, and that 0:05:14.880 --> 0:05:17.200 is that we were at our next door neighbor's house 0:05:17.360 --> 0:05:21.040 with our four boys, and at that point the youngest 0:05:21.160 --> 0:05:23.880 was two and the oldest was seven, and the twins 0:05:23.920 --> 0:05:27.159 were five. Um, so they were all running around like 0:05:27.240 --> 0:05:31.200 lunatics in my next door neighbor's garage because it was raining. 0:05:31.200 --> 0:05:33.320 It was supposed to be a birthday party, but they 0:05:33.360 --> 0:05:36.240 all ended up in her garage because it was raining. 0:05:36.920 --> 0:05:39.520 And this lady standing next to me looked at me 0:05:39.560 --> 0:05:42.280 and said, are they all yours? And I said, well, yeah, 0:05:42.320 --> 0:05:45.680 these four are. And she said, oh, well, God bless you, 0:05:45.800 --> 0:05:48.599 and I very nonchalantly turned to her and said, I 0:05:48.640 --> 0:05:53.159 think he already has. And it was about three days 0:05:53.240 --> 0:05:56.479 later that Karen came home from school with a stomach 0:05:56.480 --> 0:06:00.719 ache and a fever, and Um, I took him to 0:06:00.760 --> 0:06:04.280 the doctor. They thought it was a virus, so we 0:06:04.320 --> 0:06:06.080 waited a couple of days and I took him to 0:06:06.120 --> 0:06:10.760 the doctor and they did a blood test, and that 0:06:10.839 --> 0:06:15.599 was when we discovered that he had leukemia. And what 0:06:15.880 --> 0:06:20.360 had seemed like a very throwaway comments suddenly, you know, 0:06:21.000 --> 0:06:26.280 became something much more significant. I was like, well, I 0:06:26.320 --> 0:06:28.680 did think I was blessed, but now I'm not sure 0:06:28.680 --> 0:06:31.840 what to think because our whole world just stopped and 0:06:32.040 --> 0:06:37.159 went completely upside down. Leukemia, which are cancers of the bone, marrow, 0:06:37.240 --> 0:06:41.359 and blood, are the most common childhood cancers. They account 0:06:41.440 --> 0:06:45.680 for about of all cancers in children. Hey, Matt Cleo 0:06:45.839 --> 0:06:49.679 in here, I'm a co founder of Curing Kids Cancer, 0:06:50.480 --> 0:06:54.880 and I really glad to be with you today. UM 0:06:55.120 --> 0:06:59.159 I M done a lot of things over my career, 0:06:59.520 --> 0:07:04.880 all in communications, however, former former newspaper guy, former TV guy, 0:07:05.120 --> 0:07:08.599 eight years at CNN and ended up working at A 0:07:08.760 --> 0:07:11.760 T and T through a series of acquisitions starting with 0:07:11.880 --> 0:07:14.480 Bell South that singular than a T and T all 0:07:14.480 --> 0:07:19.240 in the communications field. And you know, I just found 0:07:19.280 --> 0:07:23.880 myself in the middle of this whole childhood catcher thing. 0:07:24.000 --> 0:07:27.080 Is a dad who went to work one day and 0:07:27.240 --> 0:07:29.640 got a phone call. It was in the middle of 0:07:29.680 --> 0:07:33.440 a y two k exercise because everybody thought the world 0:07:33.480 --> 0:07:35.240 was going to come to an end. So where we 0:07:35.240 --> 0:07:39.440 were at bell South practicing make sure all our systems 0:07:39.440 --> 0:07:44.520 were gonna work for the clock changing over. On December 0:07:44.600 --> 0:07:48.400 thirty one to January one, two thousand and I got 0:07:48.400 --> 0:07:51.880 a phone call and it was gone, Yes, she said, 0:07:51.880 --> 0:07:54.400 You've got to get to the hospital. I'm like, what 0:07:54.440 --> 0:07:59.040 are you talking about, UM, she's a killion sick. I 0:07:59.040 --> 0:08:02.280 don't like, Oh my gosh, what isn't She said, well, 0:08:02.400 --> 0:08:05.840 we don't know, but they think it might be cancer. UM. 0:08:05.920 --> 0:08:10.200 And of course took off out of work immediately and 0:08:10.320 --> 0:08:14.520 mcbrin over at Children's Health Care about latter. For boys 0:08:14.560 --> 0:08:18.200 with lukmia, the treatment takes three and a half years 0:08:18.920 --> 0:08:22.200 and for girls it's two and a half years. UM 0:08:22.880 --> 0:08:28.400 and so we started on his treatment, going three times 0:08:28.400 --> 0:08:31.880 a week to the hospital Monday, Wednesday, Friday. I had 0:08:32.200 --> 0:08:35.000 my two year old, another five year old and a 0:08:35.040 --> 0:08:40.920 seven year old UM and basically the whole community UM 0:08:41.160 --> 0:08:46.280 really gathered around us and helped us. Our church family 0:08:46.679 --> 0:08:51.120 cooked his meals, they did our washing, they kept my boys. Um. 0:08:52.040 --> 0:08:57.240 And it was just, you know, a totally different world. Um. 0:08:58.520 --> 0:09:04.000 And we were told that um, you know, leukemia and 0:09:04.080 --> 0:09:07.720 the type of leukemia that he had was very curable. Um. 0:09:08.679 --> 0:09:12.400 And so you know, we were we were hopeful that 0:09:12.760 --> 0:09:15.920 everything was going to be okay eventually. UM. But it 0:09:15.960 --> 0:09:19.640 was hard. It was very hard on him, and of 0:09:19.679 --> 0:09:22.120 course we were just devastated. But you know, we were 0:09:22.160 --> 0:09:25.280 given you know, pretty good news on the day that said, 0:09:25.320 --> 0:09:28.400 it's likely to be the most common form of leukemia 0:09:28.480 --> 0:09:31.080 we cure. You know, at that point they were curing 0:09:31.160 --> 0:09:34.960 like eight to nine percent of cases. So we felt 0:09:35.000 --> 0:09:38.439 pretty good about things at that point. But that's kind 0:09:38.440 --> 0:09:41.560 of how it all started. A call at work and 0:09:41.600 --> 0:09:44.560 a trip to the hospital. The next thing, you knew, 0:09:44.679 --> 0:09:50.440 the next four years or so, we're completely consumed by 0:09:51.320 --> 0:09:58.000 battling this terrible disease. Tell me about killing Oh gosh, okay, 0:09:58.120 --> 0:10:04.160 well hang gonn, I'll show you a picture Ellen. That's him. 0:10:04.200 --> 0:10:08.240 And he was a little monkey he Um. He was 0:10:08.240 --> 0:10:11.079 one of those kids who like, if there was something 0:10:11.120 --> 0:10:13.920 that could go wrong, it would go wrong. So like 0:10:14.160 --> 0:10:16.680 he was always the one that got into trouble and 0:10:16.880 --> 0:10:21.800 because there were twins, like I'd be I would walk 0:10:21.840 --> 0:10:24.120 out of the room and like two seconds later, I 0:10:24.160 --> 0:10:28.440 would hear this little voice going, oh, and I knew 0:10:28.600 --> 0:10:32.199 the minute I heard that that something bad. It happened 0:10:32.679 --> 0:10:35.480 the minute I turned my back. And it was always 0:10:35.520 --> 0:10:37.280 Kellyan right in the middle of it. I mean, if 0:10:37.280 --> 0:10:40.640 there was a if there was a stream, he would 0:10:40.720 --> 0:10:43.240 fall in it. If there was a mud puddle, he 0:10:43.280 --> 0:10:46.400 would step in it. I mean it was he was 0:10:46.440 --> 0:10:48.760 one of those kids. But he had the best sense 0:10:48.800 --> 0:10:53.079 of humor. I mean he was He was just a joy. 0:10:53.360 --> 0:10:55.760 He really was. He was a ball of fire. I'll 0:10:55.800 --> 0:10:59.120 tell you that. It's so different from his other brothers 0:10:59.120 --> 0:11:04.240 who had darker hair and uh killian head blonde hair 0:11:04.679 --> 0:11:08.679 and killian head. Green said. He was just everywhere all 0:11:08.720 --> 0:11:14.320 at once. Uh just the first to join in a party, 0:11:14.440 --> 0:11:17.920 the first to you know, raise his hand, to volunteer 0:11:17.960 --> 0:11:21.320 to do anything, love playing with his level of playing 0:11:21.360 --> 0:11:23.480 with his friends. And he loves sports. I mean, he 0:11:23.559 --> 0:11:29.360 absolutely loves sports. Uh was you know on the baseball team, 0:11:29.400 --> 0:11:35.520 on the basketball team played ball headed um very inspirational 0:11:35.600 --> 0:11:40.160 to see him out there Um, I remember one time 0:11:40.200 --> 0:11:43.120 on the swim team, he actually he actually cried because, 0:11:43.880 --> 0:11:47.040 uh he came in second and he had just finished chemo. 0:11:47.200 --> 0:11:49.680 That so, I mean, that's not a kid he was. 0:11:49.800 --> 0:11:53.360 He just like he just wanted to be an ordinary kid. 0:11:54.160 --> 0:11:57.880 Very competitive, but just just a very loving kid. Love 0:11:57.960 --> 0:12:02.760 to tell jokes. Uh you know, it's just what do 0:12:02.800 --> 0:12:06.200 you call a cow with no legs? Ground beef? So 0:12:06.280 --> 0:12:09.800 that was one of his favorites, you know. So he uh, 0:12:09.920 --> 0:12:11.560 he was just that. It was just a joy to 0:12:11.600 --> 0:12:16.880 be around. He really was. Again. When diagnosed with leukemia December, 0:12:19.280 --> 0:12:23.800 Killian was a month shy of his sixth birthday. There 0:12:23.800 --> 0:12:26.240 were a lot of hard moments. But when we brought 0:12:26.360 --> 0:12:31.680 him home after his initial diagnosis, the doctors, you know, 0:12:31.880 --> 0:12:35.880 put him on chemotherapy and uh, you know, we we 0:12:36.679 --> 0:12:39.640 didn't know much of anything, and because he was so young, 0:12:40.000 --> 0:12:43.480 they actually put him on a lot of liquid medicines, which, 0:12:43.880 --> 0:12:47.720 as you're gonna imagine, just tasted horrible. And he would 0:12:47.800 --> 0:12:50.120 just fight tooth and nail. He did not want to 0:12:50.160 --> 0:12:53.920 take that medicine. It's just it was a battle night 0:12:54.120 --> 0:12:58.040 after night. And this was before you know, the internet 0:12:58.200 --> 0:13:00.719 was what it is today. So that wasn't like they 0:13:00.720 --> 0:13:04.600 were like a bunch of parental groups on there that 0:13:04.640 --> 0:13:06.680 you could turn to for advice. You just had to 0:13:06.720 --> 0:13:10.760 call up people and and talk to them about what worked. 0:13:10.840 --> 0:13:13.920 And finally we found out, you know, you could get 0:13:14.040 --> 0:13:15.800 him to take a pill, and you could go to 0:13:15.840 --> 0:13:19.120 the pharmacy and get actual empty capsules and put the 0:13:19.160 --> 0:13:22.720 medicine inside the capsule. And so that was a huge 0:13:22.800 --> 0:13:25.200 win for us because I didn't think we were going 0:13:25.240 --> 0:13:28.240 to get the medicine in him. I honestly was worried 0:13:28.320 --> 0:13:31.520 that he was going to get high enough dose because 0:13:31.720 --> 0:13:35.360 he was fighting and spitting it out and in tears, 0:13:35.400 --> 0:13:38.280 and we were in tears trying to give him medication 0:13:38.440 --> 0:13:40.440 night after night. So it was a it was a 0:13:40.440 --> 0:13:43.560 big win for us to build to reach that point 0:13:43.600 --> 0:13:45.720 where hey, we can put the stuffs on a capsule 0:13:45.760 --> 0:13:47.920 and he said, I'll swallow a pill. I'll learn how 0:13:47.960 --> 0:13:51.520 to swallow a pill that and he did and that 0:13:51.559 --> 0:13:55.120 made life a lot better. So he went into remission um. 0:13:55.160 --> 0:13:57.440 You know, you have to get them into remission I 0:13:57.480 --> 0:14:00.520 think within the first thirty days, and we got him 0:14:00.520 --> 0:14:04.320 in remission um and that you know, remission doesn't mean 0:14:04.400 --> 0:14:08.040 beating cancer. A lot of people think, oh, thank god intermission. Well, 0:14:08.520 --> 0:14:11.560 that just means the medicine is working basically right, and 0:14:11.640 --> 0:14:14.160 it still means that he's going to have another three 0:14:14.240 --> 0:14:19.480 years of treatment, even after recent remission. UM. So you know, 0:14:19.600 --> 0:14:22.840 so we we carried on with that and uh, but 0:14:22.920 --> 0:14:25.960 we did, you know, get him through that first pretty 0:14:26.040 --> 0:14:29.640 much through that first round of of chemo, and things 0:14:29.640 --> 0:14:34.680 were looking so great, and you know, we started planning 0:14:34.760 --> 0:14:40.200 his recovery party. And the treatment is really awful for 0:14:40.320 --> 0:14:45.600 children because it wasn't designed for them. UM. But we 0:14:45.720 --> 0:14:48.200 got almost all the way through his treatment and we 0:14:48.240 --> 0:14:50.840 only had six months to go, and he was supposed 0:14:50.880 --> 0:14:55.560 to finish treatment on um St Patrick's Day, and so 0:14:55.800 --> 0:14:59.160 being irish, I thought, oh, well that's a good omen um. 0:14:59.720 --> 0:15:04.200 But um, with six months to go, we went for 0:15:04.240 --> 0:15:06.920 a routine blood test and discovered that the leukemia had 0:15:06.920 --> 0:15:12.160 come back worse than ever. UM. And so now our 0:15:12.200 --> 0:15:18.200 next option instead of just chemo, was a bone marrow transplant. 0:15:19.280 --> 0:15:22.440 It's not like the way they portray it in the 0:15:22.520 --> 0:15:25.480 movies where a child gets leukemia and they say, oh, yes, 0:15:25.520 --> 0:15:29.200 a bone martor transplant. That's not what happens. It's usually 0:15:30.000 --> 0:15:32.880 you know, chemo first, and then if that fails, then 0:15:33.000 --> 0:15:34.840 you have to go for a bone mirow transplant. Because 0:15:34.840 --> 0:15:38.080 a bone miro transplant is horrific because they kill off 0:15:38.080 --> 0:15:41.400 your entire immune system in order to put the new 0:15:41.440 --> 0:15:48.280 bone marrow in, and it involves radiation, and it's just 0:15:49.280 --> 0:15:51.480 awful for a child, and they have to be in 0:15:51.600 --> 0:15:54.520 isolation because they have no immune system and so they 0:15:54.520 --> 0:15:57.000 can't die if they get so much as a cold. 0:15:57.480 --> 0:15:59.480 Let me just relay a little bit about how how 0:15:59.520 --> 0:16:06.240 horrible it is for the kids they go through, you know, nauseam. 0:16:06.560 --> 0:16:10.240 They developed mouth sores because the chemo is so powerful. 0:16:11.120 --> 0:16:16.720 Um yeah, you know it affects soft tissues, uh and 0:16:16.720 --> 0:16:20.200 and makes them like you have terrible ulcers and so 0:16:20.680 --> 0:16:23.080 and there's this's almost a cruel joke because one of 0:16:23.120 --> 0:16:27.320 the medicine's, pregnizone, makes you really hungry, and then the kids, 0:16:27.400 --> 0:16:31.800 you know, have these terrible mouth soorce and they can't eat. Um. 0:16:32.000 --> 0:16:36.840 You know. Yeah. I always say that losing your hair 0:16:36.920 --> 0:16:39.200 is the easiest bet you always you can always buy 0:16:39.200 --> 0:16:42.720 a hat. It's all the other effects that are so 0:16:42.840 --> 0:16:44.800 terrible to watch them go through. I had to go 0:16:44.840 --> 0:16:47.800 through this again. With the with the bone marrow transplant 0:16:47.880 --> 0:16:51.640 to get his immune system uh to a point where 0:16:51.680 --> 0:16:53.880 they could give the bone marrow to him. And we 0:16:53.880 --> 0:16:57.560 were extremely fortunate and that his twin brother, Garrett. It 0:16:57.600 --> 0:17:01.640 was a perfect match, although because they were not identical, 0:17:02.120 --> 0:17:03.840 there was no more chance of him being a match 0:17:03.920 --> 0:17:07.800 than a regular sibling. But if they hadn't been identical, 0:17:07.920 --> 0:17:11.679 then they would have both had leukemia. So it was 0:17:11.800 --> 0:17:17.240 one of those weird situations. But Killian went through the transplant. 0:17:17.359 --> 0:17:19.879 And the magic number for bone maritis plants is a 0:17:19.920 --> 0:17:22.359 hundred days post transplants, so if you can get to 0:17:22.440 --> 0:17:26.399 that point, then they say it's been successful. We did it. 0:17:26.680 --> 0:17:29.880 He did it. He got through that bone marrow transplant. 0:17:30.160 --> 0:17:33.880 It was extremely tough on his body, and he got 0:17:33.920 --> 0:17:38.639 out and he responded beautifully to it. And you have 0:17:38.720 --> 0:17:41.240 to get to a hundred days post transplant for it 0:17:41.280 --> 0:17:43.480 to be considered a success. And we were in there 0:17:43.520 --> 0:17:47.920 at ninety days having another routine blood test when they 0:17:48.000 --> 0:17:50.199 called the society, so we need to talk to you. 0:17:51.720 --> 0:17:55.879 And at that point the doctors took us into a 0:17:55.960 --> 0:17:59.040 room and they said, we're really sorry, but he's had 0:17:59.240 --> 0:18:02.080 all the treatment he can have and you need to 0:18:02.080 --> 0:18:06.840 go and make some memories. And I was like, well, what, like, 0:18:07.680 --> 0:18:10.639 there's nothing else you can do, and they were like, well, no, 0:18:11.000 --> 0:18:15.240 he's had all the chemo and radiation and bone marrow transplantment, 0:18:15.720 --> 0:18:19.480 nothing has worked, so we're out of options. And they 0:18:19.520 --> 0:18:23.440 told us that he had relapsed again and that we 0:18:23.440 --> 0:18:27.760 should go make some memories because there was no cure 0:18:28.080 --> 0:18:31.840 at that point for him. And we did. We went 0:18:31.840 --> 0:18:36.280 and made memories. We went to Disney. We had an 0:18:36.320 --> 0:18:38.960 amazing trip with him where he was still healthy enough 0:18:39.000 --> 0:18:42.480 to enjoy it with his brothers and his cousins and 0:18:42.480 --> 0:18:46.280 an extended family. But it was very hard for Granding 0:18:46.280 --> 0:18:50.320 You and I because of course we were we were 0:18:50.359 --> 0:18:53.679 trying to remain happy and positive and pretend this was 0:18:53.760 --> 0:18:58.040 a you know, a trip to celebrate him cure, being 0:18:58.080 --> 0:19:00.719 cured of cancer, when in fact it was a you know, 0:19:01.480 --> 0:19:06.480 our last memory trip for us. We went to Disney World. 0:19:06.560 --> 0:19:08.680 We went on a trip to Disney World with the family, 0:19:08.920 --> 0:19:11.360 and that was one of the hardest things I've ever 0:19:11.400 --> 0:19:14.719 done in my life because we told the boys we 0:19:14.720 --> 0:19:18.600 were celebrating Kellyan, you know, getting through his bone mat 0:19:18.640 --> 0:19:21.080 of transplant, and an actual fact we knew we were 0:19:21.200 --> 0:19:26.239 going because he was dying, and um, we had to 0:19:26.280 --> 0:19:31.640 smile and pretend that everything was great, and that was 0:19:32.040 --> 0:19:35.920 so hard. While we were there, I was doing some 0:19:35.960 --> 0:19:39.119 research because I wasn't ready to give up, and I 0:19:39.160 --> 0:19:42.720 discovered an article about a brand new type of treatment 0:19:42.800 --> 0:19:48.600 called a targeted therapy, which is designed specifically for chemo 0:19:48.640 --> 0:19:54.080 resistant leukemia, which is obviously what Kellyan had. And um, 0:19:54.119 --> 0:19:58.520 the way it worked was it was attracted to the 0:19:58.600 --> 0:20:03.159 proteins that were on the outside of only the cancer cells, 0:20:03.240 --> 0:20:08.439 not on regular cells. And this protein in particular was 0:20:08.520 --> 0:20:14.119 c D twenty two and UM, I knew that Killian 0:20:14.200 --> 0:20:16.240 was c D twenty two positive just from all the 0:20:16.280 --> 0:20:20.080 tests and things that he had to have. And I 0:20:20.119 --> 0:20:23.120 went to our doctor and I said, okay, so I've 0:20:23.160 --> 0:20:26.640 discovered you know, there is this treatment and he said yeah, 0:20:26.760 --> 0:20:29.200 And I said, so give it to Killian And he said, well, 0:20:29.200 --> 0:20:34.240 we can't because it's not actually in treatment. It's still experimental, 0:20:34.520 --> 0:20:37.880 and um, you would have to get special permission from 0:20:37.880 --> 0:20:41.159 the f d. A. Well you never say that to 0:20:41.200 --> 0:20:46.920 a redhead, um, because that was a challenge. And I 0:20:46.960 --> 0:20:50.119 was like, okay. When we got back from Disney and 0:20:50.400 --> 0:20:54.760 GRANDI you know. She was just a warrior. She was 0:20:54.880 --> 0:20:59.000 not ready to give up. Despite the fact that doctors 0:20:59.040 --> 0:21:02.640 had said this was, you know, the end for for treatment. 0:21:02.840 --> 0:21:09.520 She discovered a treatment that had was in was in 0:21:09.560 --> 0:21:14.000 the labs and had not been cleared by the FDA 0:21:15.520 --> 0:21:18.760 for children. I had noticed that one of the doctors 0:21:18.760 --> 0:21:22.160 who was working on this new type of treatment had 0:21:22.200 --> 0:21:28.480 an Irish name, and so I knew an Irish professor 0:21:28.800 --> 0:21:33.520 of microbiology at Trinity College, Dublin, and I called him 0:21:33.560 --> 0:21:35.760 and I said, Okay, I know this is a billion 0:21:35.800 --> 0:21:38.399 to one shot, but do you know this doctor who's 0:21:38.440 --> 0:21:41.760 working on this new drug? And he said, Grania. Not 0:21:41.840 --> 0:21:43.639 only do I know him, he used to be one 0:21:43.680 --> 0:21:48.080 of my students. So I was like, okay, miracle, this 0:21:48.160 --> 0:21:51.399 is it, this is supposed to be. That is just 0:21:51.440 --> 0:21:54.000 too much of a what I call a God studence. 0:21:54.400 --> 0:21:57.639 I don't believe in coincidences. I believe in God studiences. 0:21:58.400 --> 0:22:01.640 And I was able to get touch with him, and 0:22:02.000 --> 0:22:05.119 um he put me in touch with the pediatric oncologist 0:22:05.840 --> 0:22:09.320 at the National Cancer Institute who was had been trying 0:22:09.359 --> 0:22:11.520 to get this drug into a clinical trial for three 0:22:11.520 --> 0:22:15.320 and a half years. And Cillian was the perfect candidate 0:22:15.680 --> 0:22:18.840 because he had that protein on the outside of his 0:22:18.920 --> 0:22:22.240 cancer cells. He had been through every treatment that was available, 0:22:22.920 --> 0:22:25.560 and so he said, yes, I'll try and get you 0:22:25.640 --> 0:22:29.800 special permission from the FDA. We bought a fax machine 0:22:30.160 --> 0:22:33.199 because at that point that was where the technology was, 0:22:33.520 --> 0:22:38.240 and we faxed this doctor every document we could possibly 0:22:38.320 --> 0:22:42.119 lay our hands on to do with Killian, and within 0:22:42.160 --> 0:22:44.840 a week he had got special permission from the FDA 0:22:44.960 --> 0:22:46.840 for Killian to be the first child in the world 0:22:46.920 --> 0:22:51.000 to try this new treatment. We got up to UM Washington, 0:22:51.119 --> 0:22:55.000 d C. Went to Bethesda where the National Cancer Institute is, 0:22:55.200 --> 0:22:58.280 and Killian was the first child in the world to 0:22:58.359 --> 0:23:02.040 get this treatment. And remember them taking us aside and saying, 0:23:03.640 --> 0:23:04.919 we're going to have to do this in the I 0:23:05.040 --> 0:23:07.600 c U because we don't know what's going to happen. 0:23:07.640 --> 0:23:10.600 It could kill him. And they were like, do you 0:23:10.640 --> 0:23:12.439 still want to do this? And I looked at them 0:23:12.440 --> 0:23:15.640 and I said, Um, you know he's dying anyway, right 0:23:16.119 --> 0:23:21.200 And they were like yes, I said, so let's do it. 0:23:21.240 --> 0:23:26.000 Doesn't They were like okay, so um. When they gave 0:23:26.080 --> 0:23:28.840 him the drug, there was about twenty doctors in the 0:23:28.960 --> 0:23:33.320 room and forty nurses and it were. Killian was fast asleep, 0:23:33.840 --> 0:23:36.320 thank god, because he would have freaked out if he'd 0:23:36.320 --> 0:23:40.480 seen all these doctors and nurses. And unfortunately, because he 0:23:40.560 --> 0:23:42.919 was the first child in the world to try this drug, 0:23:43.920 --> 0:23:46.200 they would have needed to give him twice the dose 0:23:46.280 --> 0:23:49.040 that they were allowed to give him by the FDA. 0:23:49.160 --> 0:23:52.440 But the doctor took us aside and said, there is 0:23:52.480 --> 0:23:56.160 a second generation of this drug in the lab, and 0:23:56.320 --> 0:23:59.240 we've tested it on Killian's cancer cells and it would 0:23:59.280 --> 0:24:02.280 be eleven times more effective than this one that we're 0:24:02.280 --> 0:24:05.080 giving him right now. And I said, great, give it 0:24:05.119 --> 0:24:07.760 to him, and he said, Grania, I can't. We don't 0:24:07.760 --> 0:24:09.840 have the money to get it out of the lab 0:24:09.880 --> 0:24:14.760 and into treatment. And at the time, Claim and I 0:24:14.800 --> 0:24:16.600 looked at each other and looked at him and we 0:24:16.680 --> 0:24:19.760 were like, why is he telling us about something that 0:24:19.800 --> 0:24:21.959 could say about our's life, but we can't give it 0:24:22.000 --> 0:24:27.440 to him. It was July two th three, Killy and Owen, 0:24:28.040 --> 0:24:30.960 who was nine at the time, had been fighting cancer 0:24:31.080 --> 0:24:34.600 for almost half his life. So we lost Killian several 0:24:34.640 --> 0:24:40.600 weeks later. But you know, the doctors told us while 0:24:40.640 --> 0:24:42.840 we were there about another drug that was stuck in 0:24:42.880 --> 0:24:46.239 the lab that may have been more effective and may 0:24:46.280 --> 0:24:49.080 have been able to cure killing. And the reason they 0:24:49.119 --> 0:24:52.640 said they couldn't get it to the bedside was lack 0:24:52.680 --> 0:24:58.320 of funding. So it's a bit of a red flag 0:24:58.400 --> 0:25:05.000 foot ball h telling my wife that. So about a 0:25:05.080 --> 0:25:09.320 year later, she decided she was going to start up 0:25:09.320 --> 0:25:11.320 a charity or just raise mine. At that point, she 0:25:11.359 --> 0:25:14.679 just wanted to raise money for childhood cancer, so she 0:25:14.880 --> 0:25:19.040 started thinking about how to do that and created during 0:25:19.119 --> 0:25:23.040 Kids Cancer. It was coming up to his first anniversary, 0:25:23.160 --> 0:25:25.040 and I was sitting with the other three boys, and 0:25:25.040 --> 0:25:27.040 I was trying to explain to them that we shouldn't 0:25:27.080 --> 0:25:31.600 be sad and upset because Kellyan was an angel and 0:25:31.680 --> 0:25:34.560 God had him and he was healthy and happy and 0:25:34.600 --> 0:25:36.960 God was looking after him better than we ever could, 0:25:37.000 --> 0:25:41.919 even though it wasn't what we wanted to happen. And 0:25:42.400 --> 0:25:48.239 I suddenly remembered that drug and the fact that it 0:25:48.320 --> 0:25:50.240 was stuck in the lab and that it could actually 0:25:50.280 --> 0:25:53.359