WEBVTT 00:00:00.000 --> 00:00:03.140 So I want you to picture a timeline and it's 00:00:03.140 --> 00:00:05.299 a short one. A really short one. Yeah, we're 00:00:05.299 --> 00:00:08.179 talking about roughly 26 months from November 00:00:08.179 --> 00:00:12.720 2002 to February 2005. Right. And usually when 00:00:12.720 --> 00:00:15.380 you see a biography that short, it's just it's 00:00:15.380 --> 00:00:17.920 a story of pure tragedy. Exactly. Pure and simple. 00:00:18.160 --> 00:00:20.660 But the data I've got in front of me today. It 00:00:20.660 --> 00:00:22.300 tells a completely different story. It's this 00:00:22.300 --> 00:00:24.879 massive contradiction. It really is. I mean, 00:00:24.879 --> 00:00:27.160 you look at the lifespan, a toddler's lifespan, 00:00:27.420 --> 00:00:29.359 and then you look at the outcome. The outcomes 00:00:29.359 --> 00:00:31.839 are just staggering. We're talking about a financial 00:00:31.839 --> 00:00:35.380 legacy of nearly $4 million, a permanent change 00:00:35.380 --> 00:00:38.259 to state laws. In West Virginia, yeah. And major 00:00:38.259 --> 00:00:40.700 infrastructure, a highway named in his honor. 00:00:40.880 --> 00:00:43.859 It reads like the resume of, I don't know. a 00:00:43.859 --> 00:00:46.719 retired senator, someone who spent 40 years building 00:00:46.719 --> 00:00:48.820 a foundation, but we're talking about a kid. 00:00:49.039 --> 00:00:51.179 A kid just learning to walk. And that right there, 00:00:51.219 --> 00:00:53.560 that is the mission for this deep dive. We're 00:00:53.560 --> 00:00:56.100 not just here to recount the sad story of Benjamin 00:00:56.100 --> 00:00:58.840 Big Ben Bowen. We're here to unpack the mechanics 00:00:58.840 --> 00:01:02.240 of legacy. Exactly. It's a case study in what 00:01:02.240 --> 00:01:04.579 I call impact density. We've pulled together 00:01:04.579 --> 00:01:07.760 biographical accounts, some really specific medical 00:01:07.760 --> 00:01:10.420 literature on his cancer, and of course the fundraising 00:01:10.420 --> 00:01:13.409 records from St. Jude. And the goal is to figure 00:01:13.409 --> 00:01:16.890 out how. How does a family use a personal crisis 00:01:16.890 --> 00:01:20.250 to force these huge systemic changes? In fundraising, 00:01:20.450 --> 00:01:23.530 in medical support, the whole system. So let's 00:01:23.530 --> 00:01:27.069 get into it. Who was Ben Bowen before he became 00:01:27.069 --> 00:01:29.810 Big Ben? Well, Ben was born November 14, 2002, 00:01:30.250 --> 00:01:33.109 in Huntington, West Virginia. Parents were Tom 00:01:33.109 --> 00:01:36.349 and Jennifer Bowen. And for the first 16 months, 00:01:36.489 --> 00:01:39.549 his file is, well, it's unremarkable in the best 00:01:39.549 --> 00:01:41.819 way. A totally normal kid. A typical healthy 00:01:41.819 --> 00:01:43.980 baby. No red flags at all. That's the terrifying 00:01:43.980 --> 00:01:46.019 part of these stories, isn't it? The suddenness. 00:01:46.379 --> 00:01:48.819 One minute you're dealing with, you know, normal 00:01:48.819 --> 00:01:51.319 baby stuff. Teething, maybe? And the next, your 00:01:51.319 --> 00:01:53.900 entire world just flips upside down. Precisely. 00:01:53.900 --> 00:01:56.480 The timeline shifts violently at 16 months. That's 00:01:56.480 --> 00:01:58.599 when doctors discovered a tumor. A tumor the 00:01:58.599 --> 00:02:00.359 size of a golf ball. In the middle of his brain. 00:02:00.500 --> 00:02:04.140 A golf ball. In a 16 -month -old. I mean, the 00:02:04.140 --> 00:02:06.159 scale of that relative to the size of his head. 00:02:07.040 --> 00:02:10.340 It's huge. It is. And the diagnosis was, uh... 00:02:10.520 --> 00:02:14.439 specific, and it was grim. Atypical teratoid 00:02:14.439 --> 00:02:17.360 rhabdoid tumor, ATRT for short. Okay, let's unpack 00:02:17.360 --> 00:02:19.039 that. For anyone who isn't in the medical field, 00:02:19.240 --> 00:02:21.919 what does ATRT actually mean? It means you're 00:02:21.919 --> 00:02:23.400 dealing with something incredibly aggressive 00:02:23.400 --> 00:02:27.180 and very rare. These are fast -growing tumors. 00:02:27.439 --> 00:02:29.740 This isn't something that developed slowly over 00:02:29.740 --> 00:02:31.879 years. It just appeared. It appeared, and it 00:02:31.879 --> 00:02:34.060 was an immediate threat to his life. I mean, 00:02:34.080 --> 00:02:36.520 to give you a sense of the urgency, he was rushed 00:02:36.520 --> 00:02:38.659 to Cincinnati Children's Hospital for emergency 00:02:38.659 --> 00:02:41.870 brain surgery. Immediately. And I'm looking at 00:02:41.870 --> 00:02:44.610 the treatment log here. It's exhausting just 00:02:44.610 --> 00:02:46.669 to read it. He was eventually transferred to 00:02:46.669 --> 00:02:48.590 St. Jude in Memphis, right? That was in March 00:02:48.590 --> 00:02:52.370 2004. But the sheer volume of procedures he went 00:02:52.370 --> 00:02:54.590 through. It's just... It's substantial. We're 00:02:54.590 --> 00:02:57.169 talking four brain surgeries, chemotherapy, radiation 00:02:57.169 --> 00:03:00.569 therapy. This is a heavy load for a full -grown 00:03:00.569 --> 00:03:03.169 adult. Let alone a toddler. A toddler who wasn't 00:03:03.169 --> 00:03:05.909 even two years old yet. And yet, this is where 00:03:05.909 --> 00:03:08.919 the legend of Big Ben starts to form. You'd think 00:03:08.919 --> 00:03:10.860 a nickname like that, maybe he was just a big 00:03:10.860 --> 00:03:13.979 baby. No, and that's the nuance here. He wasn't 00:03:13.979 --> 00:03:16.879 physically big, especially not while his body 00:03:16.879 --> 00:03:18.960 was under assault from the treatments. The nickname 00:03:18.960 --> 00:03:21.860 came from his demeanor. His personality. The 00:03:21.860 --> 00:03:24.199 sources all highlight his bravery, his smile. 00:03:24.379 --> 00:03:27.280 He just occupied this big space emotionally for 00:03:27.280 --> 00:03:30.099 everyone around him. I love that. It frames him 00:03:30.099 --> 00:03:32.780 as a personality, not just a victim, a little 00:03:32.780 --> 00:03:35.800 force of nature. But despite everything, the 00:03:35.800 --> 00:03:38.930 biology eventually wins out. Unfortunately, yes. 00:03:39.270 --> 00:03:42.150 By November 2004, right around his second birthday, 00:03:42.409 --> 00:03:45.530 the tumor came back. And at that point, the medical 00:03:45.530 --> 00:03:48.310 options were just, they were running out. No 00:03:48.310 --> 00:03:51.189 known treatments left. Nothing. This brings us 00:03:51.189 --> 00:03:52.889 to one of the most surprising connections in 00:03:52.889 --> 00:03:55.509 the whole story. The family decides to take a 00:03:55.509 --> 00:03:57.969 trip. A two -week trip to Disney World to celebrate 00:03:57.969 --> 00:04:00.289 his second birthday. Now, on the surface, that 00:04:00.289 --> 00:04:02.250 sounds like, you know, a make -a -wish type of 00:04:02.250 --> 00:04:04.969 thing. A wonderful but standard story. But the 00:04:04.969 --> 00:04:07.900 backstory of how this trip happened. It's wild. 00:04:08.120 --> 00:04:10.900 It's fascinating. It connects this one family's 00:04:10.900 --> 00:04:13.539 tragedy in West Virginia to a national tragedy. 00:04:13.659 --> 00:04:17.079 Right. So Ben's father, Tom Bowen, he was a firefighter. 00:04:17.379 --> 00:04:20.720 And it turns out years before, Tom had assisted 00:04:20.720 --> 00:04:23.259 in the recovery efforts for a victim of the September 00:04:23.259 --> 00:04:26.040 11 attacks. Correct. And this is where you see 00:04:26.040 --> 00:04:28.959 that cycle of aid. It comes back around. The 00:04:28.959 --> 00:04:31.360 family of that 9 -11 victim, they heard what 00:04:31.360 --> 00:04:34.220 was happening. And they, along with Federal Express, 00:04:34.540 --> 00:04:37.100 they stepped in. They were the ones who made 00:04:37.100 --> 00:04:39.759 that Disney trip possible. That just, that gives 00:04:39.759 --> 00:04:42.800 me goosebumps. A father does his job, helps a 00:04:42.800 --> 00:04:45.379 family during 9 -11, and years later when his 00:04:45.379 --> 00:04:48.180 own son is dying, that exact same network comes 00:04:48.180 --> 00:04:50.420 back to support him. It really highlights how 00:04:50.420 --> 00:04:52.600 interconnected these support systems can be. 00:04:52.699 --> 00:04:54.740 It wasn't just some random act of kindness. No. 00:04:54.819 --> 00:04:56.920 It was reciprocal. It was born out of shared 00:04:56.920 --> 00:05:00.060 trauma. Tom's service directly enabled him to 00:05:00.060 --> 00:05:02.850 give his son that one last joy. So they have 00:05:02.850 --> 00:05:04.870 this incredible trip, this moment of happiness. 00:05:05.149 --> 00:05:07.410 But the Bowens didn't just want a vacation. They 00:05:07.410 --> 00:05:09.790 wanted to do something bigger. This is the pivot 00:05:09.790 --> 00:05:11.949 point. This is where we move from a medical story 00:05:11.949 --> 00:05:14.910 to a legacy story. They want to thank St. Jude. 00:05:15.230 --> 00:05:17.550 Right. St. Jude doesn't charge families. Not 00:05:17.550 --> 00:05:20.050 for treatment, not for travel, housing, food. 00:05:20.550 --> 00:05:24.129 And that all costs money. A lot of money. So 00:05:24.129 --> 00:05:27.029 phase one of the fundraising begins. And it's 00:05:27.029 --> 00:05:30.529 classic grassroots stuff. Burst bands. Awareness 00:05:30.529 --> 00:05:33.069 bracelets. They sold these Big Ben bracelets 00:05:33.069 --> 00:05:35.730 for Valentine's Day. And this wasn't just like 00:05:35.730 --> 00:05:38.290 a local bake sale kind of thing? Not at all. 00:05:38.350 --> 00:05:40.410 What was the final tally on those things? Over 00:05:40.410 --> 00:05:46.310 $120 ,000. Wow. $120 ,000. From selling bracelets, 00:05:46.470 --> 00:05:48.970 that is an incredible amount of community mobilization. 00:05:49.209 --> 00:05:51.750 It is. It just proves how much the story had 00:05:51.750 --> 00:05:54.680 resonated. But the Bowens realized that retail 00:05:54.680 --> 00:05:57.680 fundraising, it has a ceiling. To really move 00:05:57.680 --> 00:06:00.079 the needle, they needed something bigger. They 00:06:00.079 --> 00:06:02.360 went from bracelets to real estate. The house 00:06:02.360 --> 00:06:05.420 that Ben built. Exactly. In 2007, they organized 00:06:05.420 --> 00:06:08.379 a raffle for a house in Putnam County, West Virginia. 00:06:08.680 --> 00:06:10.920 Now, I know what you're thinking. A raffle. Simple. 00:06:11.079 --> 00:06:14.040 Buy a ticket, maybe win a house. But reading 00:06:14.040 --> 00:06:16.720 the notes, it was not simple at all. No. And 00:06:16.720 --> 00:06:18.560 this is such a key takeaway for how these things 00:06:18.560 --> 00:06:20.800 actually work. You can't just raffle off a house. 00:06:21.240 --> 00:06:24.519 There are strict gambling and gaming laws. And 00:06:24.519 --> 00:06:27.199 in this case, their ambition ran right up against 00:06:27.199 --> 00:06:29.519 the legal code of West Virginia. So they hit 00:06:29.519 --> 00:06:31.980 a wall. Most people, especially grieving parents, 00:06:32.139 --> 00:06:33.759 you'd think they would stop there. Of course. 00:06:34.100 --> 00:06:36.980 You'd say, OK, we tried. The law says no. But 00:06:36.980 --> 00:06:39.000 they didn't stop. They went to the top. They 00:06:39.000 --> 00:06:41.639 went to Governor Joe Manchin. And this is where 00:06:41.639 --> 00:06:45.100 the mechanics of legacy become literal. Governor 00:06:45.100 --> 00:06:47.480 Manchin actually had to change West Virginia's 00:06:47.480 --> 00:06:50.660 state law to make this one specific house raffle 00:06:50.660 --> 00:06:54.259 legal. That is just profound. We are talking 00:06:54.259 --> 00:06:57.160 about a legislative change driven by the memory 00:06:57.160 --> 00:06:59.439 of a two -year -old. And the consequences of 00:06:59.439 --> 00:07:02.000 that change were structural. Because the law 00:07:02.000 --> 00:07:05.160 was changed, St. Jude was able to launch a dedicated 00:07:05.160 --> 00:07:07.579 West Virginia field office. So it wasn't just 00:07:07.579 --> 00:07:10.899 for that one house. No. That office now organizes 00:07:10.899 --> 00:07:13.699 state fundraising. That infrastructure exists 00:07:13.699 --> 00:07:16.319 today because of the push to raffle that house. 00:07:16.439 --> 00:07:18.839 It opened the door for St. Jude to operate in 00:07:18.839 --> 00:07:21.079 the state permanently. It removed the barrier 00:07:21.079 --> 00:07:23.220 for all future fundraising. Correct. And the 00:07:23.220 --> 00:07:25.860 money from that first house. That 2007 raffle 00:07:25.860 --> 00:07:29.620 brought in $808 ,000. Incredible. So we went 00:07:29.620 --> 00:07:33.439 from $120 ,000 in wristbands to nearly a million 00:07:33.439 --> 00:07:37.439 from one. House. And they kept going. In 2008, 00:07:37.740 --> 00:07:40.720 a second Dream Home giveaway raised over a million 00:07:40.720 --> 00:07:43.399 dollars. Yeah. By 2009, they were planning to 00:07:43.399 --> 00:07:45.420 expand to two locations. It just became this 00:07:45.420 --> 00:07:47.560 self -sustaining fundraising machine. It's amazing 00:07:47.560 --> 00:07:49.439 to see the numbers climb like that, but I want 00:07:49.439 --> 00:07:51.579 to pause here. Because we're talking about millions 00:07:51.579 --> 00:07:53.839 of dollars and houses and laws, and it's easy 00:07:53.839 --> 00:07:56.300 to get swept up in the success of it all. But 00:07:56.300 --> 00:07:59.420 we have to remember why. why this money was needed. 00:07:59.620 --> 00:08:02.019 The source material is very, very graphic about 00:08:02.019 --> 00:08:04.519 the reality of ATRT. I agree. We need to ground 00:08:04.519 --> 00:08:07.199 this. The hard truths of the disease are essential 00:08:07.199 --> 00:08:09.579 to understanding the urgency. Why do you need 00:08:09.579 --> 00:08:12.519 to raise $4 million? Because the end of Ben's 00:08:12.519 --> 00:08:15.439 life was not peaceful, not physiologically. No, 00:08:15.459 --> 00:08:17.519 it wasn't. The sources state that in his final 00:08:17.519 --> 00:08:20.120 months, morphine wasn't even enough. It was inadequate 00:08:20.120 --> 00:08:23.860 for the pain. And for a parent or a doctor, that 00:08:23.860 --> 00:08:26.699 is a terrifying place to be. And the physical 00:08:26.699 --> 00:08:29.560 transformation was extreme. His body, from the 00:08:29.560 --> 00:08:32.600 tumor and the fluid, it tripled inside. Tripled 00:08:32.600 --> 00:08:34.639 inside. I can't even visualize that on a toddler. 00:08:34.820 --> 00:08:37.820 And there were other symptoms mentioned. Severe 00:08:37.820 --> 00:08:40.440 physiological distress. It's difficult to hear, 00:08:40.539 --> 00:08:43.230 but it's the reality. The neuropathic pain, the 00:08:43.230 --> 00:08:46.330 nerve pain was so intense that his parents couldn't 00:08:46.330 --> 00:08:48.269 physically hold him. That's the part that hits 00:08:48.269 --> 00:08:50.509 me the hardest. Your child is dying. And the 00:08:50.509 --> 00:08:53.570 one thing you want to do, the one human instinct. 00:08:53.750 --> 00:08:55.769 To comfort them, to hold them. Is the one thing 00:08:55.769 --> 00:08:57.970 that causes them more agony. It frames a whole 00:08:57.970 --> 00:08:59.850 legacy differently, doesn't it? Yeah. The millions 00:08:59.850 --> 00:09:02.789 of dollars aren't for research in some abstract 00:09:02.789 --> 00:09:06.250 sense. No. They are to prevent that. That specific 00:09:06.250 --> 00:09:08.549 nightmare. The fundraising is a counterattack 00:09:08.549 --> 00:09:11.139 against that reality. Exactly. Ben passed away 00:09:11.139 --> 00:09:14.600 on February 25, 2005. He was two years old. And 00:09:14.600 --> 00:09:16.740 all of this is a direct response to the brutality 00:09:16.740 --> 00:09:19.120 of that experience. And strangely, his career 00:09:19.120 --> 00:09:22.899 as a civic figure, it really accelerated after 00:09:22.899 --> 00:09:25.919 he passed. It did. There were honors given to 00:09:25.919 --> 00:09:28.820 him both during his life and after. Let's run 00:09:28.820 --> 00:09:31.639 through some. While he was still alive, he was 00:09:31.639 --> 00:09:34.419 named St. Jude Patient of the Month in September 00:09:34.419 --> 00:09:37.909 2004. And the Shelby County Sheriff in Tennessee 00:09:37.909 --> 00:09:42.529 actually declared December 6, 2004 as Benjamin 00:09:42.529 --> 00:09:45.850 Bowen Day. Wow. But the posthumous honors are 00:09:45.850 --> 00:09:47.950 where you see the entire state of West Virginia 00:09:47.950 --> 00:09:50.090 really wrapping its arms around this family. 00:09:50.269 --> 00:09:52.710 Yes. Governor Manchin issued a special citation. 00:09:53.289 --> 00:09:55.710 And later that year, Ben and his family were 00:09:55.710 --> 00:09:58.669 named one of the 55 good things about West Virginia. 00:09:58.789 --> 00:10:01.529 Which is a beautiful sentiment, finding the good 00:10:01.529 --> 00:10:03.580 in such a tragedy. But then there are the physical 00:10:03.580 --> 00:10:05.940 landmarks. You can actually drive on Ben's legacy. 00:10:06.259 --> 00:10:09.159 You can. West Virginia Route 193. It's a four 00:10:09.159 --> 00:10:11.960 -lane bypass near Huntington. In September 2006, 00:10:12.340 --> 00:10:14.919 it was officially named the Big Ben Bowen Highway. 00:10:15.299 --> 00:10:17.899 And there's such a poignant detail about that 00:10:17.899 --> 00:10:20.100 highway in the records. Yes. During Ben's funeral, 00:10:20.299 --> 00:10:22.200 the funeral cortege, the procession, actually 00:10:22.200 --> 00:10:24.200 traveled along that specific stretch of road. 00:10:24.379 --> 00:10:26.539 On the way to the cemetery. It wasn't named for 00:10:26.539 --> 00:10:29.399 him yet. Not yet. But the path he took to his 00:10:29.399 --> 00:10:32.460 resting place is the same road that now bears 00:10:32.460 --> 00:10:35.980 his name. That is just, it's poetic and heartbreaking 00:10:35.980 --> 00:10:38.559 all at once. And on a local level, there's still 00:10:38.559 --> 00:10:42.019 the annual Big Bend 5K for kids. Which keeps 00:10:42.019 --> 00:10:45.120 the community involved year after year. And we 00:10:45.120 --> 00:10:47.240 shouldn't overlook the media impact. He was in 00:10:47.240 --> 00:10:49.820 a TV special called Fighting for Life. Narrated 00:10:49.820 --> 00:10:52.789 by Alan Alda. Correct. I mean, being featured 00:10:52.789 --> 00:10:55.129 in a national broadcast like that, it just amplifies 00:10:55.129 --> 00:10:57.649 the story far beyond West Virginia. Plus, there 00:10:57.649 --> 00:10:59.929 was a seven -part local news series in 2007. 00:11:00.529 --> 00:11:03.330 So we have the fundraising, the laws, the highway, 00:11:03.529 --> 00:11:05.629 the media. What happened to the family after 00:11:05.629 --> 00:11:07.649 all of this? They actually moved to the Memphis 00:11:07.649 --> 00:11:10.970 area. And Tom Bowen, Ben's father, he changed 00:11:10.970 --> 00:11:13.330 careers completely. He went to work for St. Jude. 00:11:13.590 --> 00:11:15.269 He did. He went to work for St. Jude to raise 00:11:15.269 --> 00:11:18.370 funds. And later, the sources note, he worked 00:11:18.370 --> 00:11:20.700 on creating the Childhood Cancer Network. So 00:11:20.700 --> 00:11:22.720 the mission that started with his son's diagnosis 00:11:22.720 --> 00:11:25.620 became his entire life's work. They didn't just 00:11:25.620 --> 00:11:28.139 survive it. They reorganized their lives around 00:11:28.139 --> 00:11:31.139 fighting it. It's a total redirection of a family's 00:11:31.139 --> 00:11:33.399 path. And if you look at the total financial 00:11:33.399 --> 00:11:37.080 impact, Ben's story has raised almost $4 million 00:11:37.080 --> 00:11:41.460 for St. Jude. $4 million from a life that lasted 00:11:41.460 --> 00:11:43.799 two years. It's just, it's hard to wrap your 00:11:43.799 --> 00:11:45.600 head around that. It proves that the duration 00:11:45.600 --> 00:11:48.460 of a life has absolutely no correlation to the 00:11:48.460 --> 00:11:51.379 impact of that life. That is a powerful thought. 00:11:51.440 --> 00:11:53.019 You know, when I started reading this file, I 00:11:53.019 --> 00:11:55.700 thought I was reading a medical case study. But 00:11:55.700 --> 00:11:58.460 it's really a civics lesson. It is. It's a lesson 00:11:58.460 --> 00:12:01.720 in how a community from neighbors buying wristbands 00:12:01.720 --> 00:12:04.919 all the way up to a governor changing laws can 00:12:04.919 --> 00:12:07.320 mobilize around a single. patient of the month. 00:12:07.480 --> 00:12:09.860 It shows that public policy isn't always driven 00:12:09.860 --> 00:12:12.379 by think tanks or lobbyists. Sometimes it's driven 00:12:12.379 --> 00:12:14.620 by a community that just refuses to accept that 00:12:14.620 --> 00:12:16.899 a toddler can't be held by his parents. So here's 00:12:16.899 --> 00:12:18.379 the thought I want to leave you with. We look 00:12:18.379 --> 00:12:20.480 at civic figures, people with highways named 00:12:20.480 --> 00:12:23.179 after them as these elder statesmen. But in West 00:12:23.179 --> 00:12:25.960 Virginia, you have a highway and a law and a 00:12:25.960 --> 00:12:28.139 fundraising office that all trace their existence 00:12:28.139 --> 00:12:31.620 back to a toddler who just wanted to be Big Ben. 00:12:31.799 --> 00:12:34.659 It challenges us to think about what drives the 00:12:34.659 --> 00:12:37.809 public good. Sometimes it's not a policy debate. 00:12:38.289 --> 00:12:41.610 It's just the sheer undeniable reality of one 00:12:41.610 --> 00:12:44.590 child's bravery. And it shows that legacy isn't 00:12:44.590 --> 00:12:46.730 something you leave behind. It's something you 00:12:46.730 --> 00:12:49.649 build actively while you're right in the middle 00:12:49.649 --> 00:12:52.610 of the crisis. A huge thank you to everyone listening 00:12:52.610 --> 00:12:54.629 to this deep dive. It's a heavy one, I know, 00:12:54.730 --> 00:12:56.950 but an important one. Absolutely. Thank you for 00:12:56.950 --> 00:12:58.649 listening. We'll catch you on the next deep dive. 00:12:58.750 --> 00:12:59.090 Take care.