WEBVTT - Case #17: Every Cure Pt.1 (Dr. David Fajgenbaum) 0:00:04.080 --> 0:00:07.400 I'll never forget my doctor walking into the room and saying, David, 0:00:07.440 --> 0:00:13.040 your liver, your kidneys, your bone marrow, your heart, and 0:00:13.080 --> 0:00:17.520 your lungs are shutting down. I was just treating patients 0:00:17.560 --> 0:00:18.160 down the hall. 0:00:19.280 --> 0:00:22.880 I was just spiraling, not knowing what was actually happening, 0:00:22.920 --> 0:00:25.120 just being so confused because I just talked to him, 0:00:25.120 --> 0:00:26.640 like two days ago. 0:00:27.200 --> 0:00:29.440 A priest came in and read him his last rites, 0:00:30.000 --> 0:00:33.040 and then a few of us friends came in and 0:00:33.560 --> 0:00:35.639 ultimately hugged him goodbye. 0:00:35.840 --> 0:00:37.720 I had to take some action, and it had to 0:00:37.720 --> 0:00:39.760 be like a crazy step, and that is to start 0:00:39.800 --> 0:00:42.159 testing one of these drugs that I was studying in 0:00:42.200 --> 0:00:43.320 the lab on myself. 0:00:48.320 --> 0:00:51.920 How terrifying would it be to fight an unknown enemy, 0:00:52.440 --> 0:00:56.280 one you didn't recognize and didn't see coming. What if 0:00:56.320 --> 0:01:01.000 that enemy was coming from within a disease even doctors 0:01:01.000 --> 0:01:06.319 couldn't identify. Nearly half of all Americans suffer from some 0:01:06.560 --> 0:01:12.280 chronic illness, and many struggle for an accurate diagnosis. These 0:01:12.560 --> 0:01:19.840 are their stories. I'm Lauren bred Pacheco, and this is symptomatic. 0:01:34.240 --> 0:01:37.760 David Fagenbaum grew up in Raleigh, North Carolina. 0:01:37.920 --> 0:01:40.360 And I've got two older sisters, seven and five years 0:01:40.400 --> 0:01:45.120 older than me, and two amazing parents. They immigrated to 0:01:45.160 --> 0:01:47.440 the United States from Trinidad and Tobago and the Caribbean, 0:01:47.720 --> 0:01:49.760 so they were sort of making this new life the 0:01:49.800 --> 0:01:51.720 American dream in the States. 0:01:52.000 --> 0:01:55.960 And childhood exposure to a very American sport ignited one 0:01:56.040 --> 0:01:59.920 of David's biggest dreams. And your dad is an orthoped 0:02:00.240 --> 0:02:03.560 surgeon and worked for a period of time with North 0:02:03.560 --> 0:02:07.560 Carolina State wolfback team. That's right, which is where at 0:02:07.560 --> 0:02:11.280 the age of seven you had this burning desire to 0:02:11.480 --> 0:02:13.880 play which position in what division? 0:02:14.440 --> 0:02:16.720 I wanted to play quarterback? And I want to play 0:02:16.760 --> 0:02:19.560 Division one college football. That was like my first dream 0:02:19.840 --> 0:02:22.400 and that is all I could think about for about 0:02:22.440 --> 0:02:23.000 a decade. 0:02:23.800 --> 0:02:27.520 Your dad working so much, your mom kind of became 0:02:28.440 --> 0:02:29.760 almost your football trainer. 0:02:30.200 --> 0:02:33.440 She did. She was my football trainer. She was my 0:02:33.480 --> 0:02:36.639 mom obviously. She was also one of my closest friends. 0:02:36.680 --> 0:02:39.359 And there was a hill behind her house and she 0:02:39.400 --> 0:02:40.840 would stand at the top of this hill and I 0:02:40.840 --> 0:02:43.079 would throw the football into the hill and then she could, 0:02:43.120 --> 0:02:45.079 you know, throw it back down. She just wanted to 0:02:45.080 --> 0:02:46.560 help me in any way that she could, even if 0:02:46.560 --> 0:02:49.080 it was just you know, rolling footballs down a hill. 0:02:49.880 --> 0:02:53.240 At an early age. David showed his ability for extreme 0:02:53.320 --> 0:02:57.720 dedication and focus becoming a star high school quarterback. But 0:02:57.960 --> 0:02:59.919 that's just one of the reasons he caught the attention 0:03:00.240 --> 0:03:01.919 of Caitlin, his future wife. 0:03:02.880 --> 0:03:08.320 He was the president of student council and we had 0:03:08.520 --> 0:03:11.320 morning meeting every morning. He got up there with his 0:03:11.360 --> 0:03:14.760 best friend and nothing to do. 0:03:14.680 --> 0:03:15.880 With school at all. 0:03:15.919 --> 0:03:21.320 They started rapping eminem songs. The whole student body was 0:03:21.400 --> 0:03:23.760 just like, what is happening? 0:03:23.919 --> 0:03:24.560 I even said that. 0:03:24.560 --> 0:03:26.840 I'm like, I was very confused by him, but I 0:03:26.880 --> 0:03:29.120 was also like, Wow, he's really attractive. 0:03:31.360 --> 0:03:37.120 Attractive and driven. You ended up playing quarterback for Georgetown. 0:03:37.440 --> 0:03:37.880 That's right. 0:03:37.960 --> 0:03:40.240 Listeners may not know Georgetown has a football team, but 0:03:40.280 --> 0:03:43.040 we do and we are Division one. 0:03:43.480 --> 0:03:43.720 Yes. 0:03:43.800 --> 0:03:46.160 For me, it was the ultimate dream that I Yeah, 0:03:46.160 --> 0:03:48.280 I'd been thinking about for over ten years. 0:03:48.520 --> 0:03:51.680 It's bittersweet too, because I know that your mom was 0:03:51.720 --> 0:03:54.240 diagnosed your freshman year. 0:03:54.920 --> 0:03:55.360 That's right. 0:03:55.520 --> 0:03:58.520 Actually, just two weeks after she dropped me off to Georgetown, 0:03:58.680 --> 0:04:02.080 and I got this phone call for my dad. When 0:04:02.080 --> 0:04:04.000 he called, I started telling you all about this football 0:04:04.000 --> 0:04:07.000 practice we had and all these touchdowns and all this stuff, 0:04:07.040 --> 0:04:08.920 and he was just silent, and then he told me, 0:04:09.000 --> 0:04:13.400 he said, David, your mom has brain cancer. And gosh, 0:04:13.440 --> 0:04:17.000 I was like, what, you know, that can't be mom, 0:04:17.160 --> 0:04:20.800 Like she's she's the most amazing person to everyone, Like 0:04:20.880 --> 0:04:23.840 it's not faired, it's not right, and so yeah, that 0:04:24.240 --> 0:04:28.520 sort of changed everything in my life. It just everything changed. 0:04:29.200 --> 0:04:34.240 Your family did exactly what in an ideal world any 0:04:34.279 --> 0:04:37.000 family would be able to do. You were really there 0:04:37.320 --> 0:04:41.800 and you were so present for her. Did it shape 0:04:42.160 --> 0:04:44.359 your desire to become a doctor? 0:04:45.400 --> 0:04:48.440 It completely shaved my desire to become a doctor. I mean, 0:04:48.880 --> 0:04:51.480 the moment that I heard my mom had cancer, and 0:04:51.680 --> 0:04:54.640 of course the moment that I saw her dealing with 0:04:54.680 --> 0:04:58.800 her cancer, I just said, this is what I have 0:04:58.880 --> 0:05:01.040 to spend the rest of my life life doing. And 0:05:01.080 --> 0:05:04.279 by this, it's taking care of people with horrible diseases, 0:05:04.279 --> 0:05:07.719 and it's searching for treatments so that people don't suffer 0:05:07.920 --> 0:05:09.400 like I witnessed my mom suffering. 0:05:09.800 --> 0:05:12.600 You know, I can't imagine how painful, Because you were 0:05:13.640 --> 0:05:16.440 nineteen when she passed. 0:05:16.880 --> 0:05:18.800 I could go on all day about her. She was 0:05:18.839 --> 0:05:20.159 such a force. 0:05:20.680 --> 0:05:24.720 She battled brain cancer for fifteen months, just so valiantly, 0:05:24.839 --> 0:05:27.200 and everything about it you know, I share about the 0:05:27.440 --> 0:05:30.360 humor that she brought into it. You know, the very 0:05:30.360 --> 0:05:33.360 first brain surger she had. You know, we were devastated 0:05:33.400 --> 0:05:35.000 going to that surgery. You know, what's mom going to 0:05:35.080 --> 0:05:36.800 be like coming out of this? Is she gonna be 0:05:36.839 --> 0:05:39.440 the same person. So I'll go back to see her, 0:05:39.480 --> 0:05:42.320 and I remember that they pulled this curtain back and 0:05:42.800 --> 0:05:45.479 she had this wrap around her head and then she 0:05:45.520 --> 0:05:48.479 had this tube coming out of the incision and it 0:05:48.520 --> 0:05:49.719 had sort of a bull at the end. 0:05:49.760 --> 0:05:51.120 It was actually collecting the fluid. 0:05:51.920 --> 0:05:53.680 She looked at us and she pointed to her head 0:05:53.720 --> 0:05:57.880 and she said, shaquida banana lady, and we just like 0:05:58.480 --> 0:06:01.880 burst into laughter. It was we needed. But my mom's 0:06:01.920 --> 0:06:07.520 passing it impaled me and then it set me on fire. 0:06:11.000 --> 0:06:15.160 David's focus now set on medicine. He graduated from Georgetown 0:06:15.279 --> 0:06:18.920 and was attending the University of Pennsylvania for his medical degree, 0:06:19.320 --> 0:06:22.719 and although no longer leading a football team, his drive 0:06:22.839 --> 0:06:24.680 for physical fitness continued. 0:06:25.160 --> 0:06:27.520 I continued to exercise a lot, and that was just 0:06:27.560 --> 0:06:29.640 an out with it I loved. And so as a result, 0:06:29.960 --> 0:06:31.160 I became like really. 0:06:30.920 --> 0:06:33.000 Fit, and you had a nickname because of it. 0:06:33.400 --> 0:06:35.719 Yes, I was called the Beast because I was in 0:06:35.800 --> 0:06:38.560 really good shape. I want a bench pressing contest. In fact, 0:06:38.600 --> 0:06:41.360 I set the Virginia state record for bench pressing, which 0:06:41.440 --> 0:06:42.680 if you were to look at me now, you'd be like, 0:06:43.520 --> 0:06:45.680 you sure about that, because I definitely am not going 0:06:45.680 --> 0:06:47.559 to set any bench pressing records these days. 0:06:48.839 --> 0:06:51.400 He was really one of the healthiest guys I'd ever met. 0:06:51.560 --> 0:06:55.360 We'd go to the cafeteria and he'd get a piece 0:06:55.400 --> 0:06:58.640 of chicken and pick the fat off the chicken, even 0:06:58.720 --> 0:07:01.840 because he was soicular about what was going into his body. 0:07:02.600 --> 0:07:07.080 That's Grant Mitchell, David's longtime friend, colleague and college roommate. 0:07:07.600 --> 0:07:10.960 So in medical school you do rotations in different hospitals, 0:07:11.000 --> 0:07:17.960 and we got posted out for our Obigian rotation in Bethlehem, Pennsylvania, 0:07:18.040 --> 0:07:20.920 outside of Philadelphia, and we were staying in some dorms 0:07:20.920 --> 0:07:24.400 there and there was no gym, and so that was 0:07:24.440 --> 0:07:26.600 not going to stop David from working out. And so 0:07:26.720 --> 0:07:29.960 we found a tree outside of the dorm there that 0:07:30.040 --> 0:07:31.040 had a nice branch. 0:07:31.480 --> 0:07:34.160 The tree branch, he just looked too perfect. It was horizontal, 0:07:34.760 --> 0:07:35.960 it was perfect, so. 0:07:36.120 --> 0:07:38.720 We could hang from and do pull ups from. 0:07:39.840 --> 0:07:42.080 And so yeah, every time we walked past this tree. 0:07:42.240 --> 0:07:44.480 We had to do pulps before we went to treat patients, 0:07:44.480 --> 0:07:46.720 So yeah, we had to get pull ups in every morning. 0:07:46.600 --> 0:07:49.480 And in a weird way, that tree branch ended up 0:07:49.560 --> 0:07:54.400 being an indicator that you were getting sick. 0:07:55.120 --> 0:07:58.000 You're right, because as the weeks went on, I stopped 0:07:58.040 --> 0:08:00.720 wanting to do the pull ups. I didn't have the 0:08:00.840 --> 0:08:03.160 energy to do the pulps. I actually hadn't thought about 0:08:03.160 --> 0:08:06.280 that until you mentioned that. Now, yeah, I couldn't do them. 0:08:06.320 --> 0:08:07.320 I was just dragging. 0:08:08.000 --> 0:08:10.480 At this point in his third year of medical school, 0:08:11.000 --> 0:08:15.040 David's mental focus was on his residency and passing exams. 0:08:15.440 --> 0:08:19.240 But suddenly I'm quite out of character. David was having 0:08:19.280 --> 0:08:22.680 trouble keeping up physically, and. 0:08:22.640 --> 0:08:25.120 Then the fatigue became, this fatigue that I had never 0:08:25.200 --> 0:08:29.640 experienced before. It was like this insatiable fatigue. Basically, like 0:08:29.720 --> 0:08:32.160 no matter how much I slept, I just was exhausted. 0:08:32.200 --> 0:08:33.280 I couldn't get out of bed. 0:08:33.679 --> 0:08:36.880 I noticed lumps and bumps in my neck and flewid 0:08:36.920 --> 0:08:40.480 around my ankles, and I didn't want to go there mentally, 0:08:41.080 --> 0:08:44.880 but I knew that if a patient walked into my office. 0:08:44.880 --> 0:08:47.199 I was a third year medicinistation walked into my room 0:08:47.640 --> 0:08:50.800 and I'm the doctor looking at them, I would have 0:08:50.800 --> 0:08:53.440 been very concerned, and I would have specifically said, I'm 0:08:53.559 --> 0:08:57.000 very worried that you have an aggressive lymphoma, and in 0:08:57.040 --> 0:08:59.000 such an aggressive lymphoma that you know you might have 0:08:59.160 --> 0:09:02.200 a few weeks to live of it was moving so rapidly, 0:09:02.640 --> 0:09:04.640 but I was like trying to just block that out 0:09:04.679 --> 0:09:07.880 of my brain while at the same time I knew 0:09:07.880 --> 0:09:09.080 something really bad was happening. 0:09:09.120 --> 0:09:09.920 I even told. 0:09:09.720 --> 0:09:12.760 Grant one day he walked into the living room of 0:09:12.800 --> 0:09:16.679 our apartment and he said, something. 0:09:16.440 --> 0:09:17.400 Is just wrong. 0:09:18.120 --> 0:09:23.520 I think I'm gonna die. And David, what, You're not 0:09:23.520 --> 0:09:25.520 going to die? Like, what's gotten into you? 0:09:25.760 --> 0:09:28.600 How did you process that? Maybe just the stress of 0:09:28.640 --> 0:09:30.120 med school getting to him. 0:09:30.559 --> 0:09:33.160 Yeah, I just thought that, you know, he was focused 0:09:33.200 --> 0:09:36.040 on health, and I didn't think much of it, just 0:09:36.040 --> 0:09:38.920 told him to, you know, relax, it's okay. A lot 0:09:38.960 --> 0:09:42.280 of medical students go through this when they are in 0:09:42.360 --> 0:09:45.800 medical school and they're learning thousands of different ailments that 0:09:45.880 --> 0:09:49.160 can occur in the human body, and you start sort 0:09:49.160 --> 0:09:51.640 of thinking about what's going on inside of you and 0:09:52.160 --> 0:09:56.040 even get a little sense of paranoia. And overdiagnosis. It's 0:09:56.120 --> 0:09:58.480 kind of a running joke within medical school. Everyone's sort 0:09:58.480 --> 0:10:01.280 of diagnosing themselves and all the different things that could 0:10:01.320 --> 0:10:03.640 be happening. And so I just thought it. 0:10:03.559 --> 0:10:07.960 Was that, in addition to the exhaustion and swelling, David 0:10:08.080 --> 0:10:11.840 was noticing rashes and redness popping up all over his body. 0:10:12.240 --> 0:10:15.360 It was clear that whatever was going on it needed 0:10:15.440 --> 0:10:20.440 immediate attention, but David, being hyper focused, was determined to 0:10:20.440 --> 0:10:23.840 make it through his OBGYN exam before turning his attention 0:10:24.040 --> 0:10:24.880 towards himself. 0:10:25.400 --> 0:10:28.040 I remember, while I'm taking the exam, just like full 0:10:28.040 --> 0:10:31.400 body sweating. I'm like shivering, I like can't keep my 0:10:31.440 --> 0:10:34.839 eyes open. But I went from taking the exam and 0:10:34.880 --> 0:10:36.440 I went down the hall and I just I went 0:10:36.480 --> 0:10:40.320 straight to the er and they took me back almost immediately. 0:10:41.080 --> 0:10:43.439 I just was I was so ill, and they did 0:10:43.480 --> 0:10:46.719 blood work, and I'll never forget my doctor walking into 0:10:46.760 --> 0:10:51.679 the room and saying, David, your liver, your kidneys, your 0:10:51.720 --> 0:10:56.840 bone marrow, your heart, and your lungs are shutting down. 0:10:57.360 --> 0:10:59.080 We have to hospitalize you right away. And I'm like 0:10:59.080 --> 0:11:02.079 sitting I'm like, but I was just treating patients down 0:11:02.160 --> 0:11:04.440 the hall like a couple days ago. 0:11:05.920 --> 0:11:09.720 We weren't taking a break at this point, and I 0:11:09.800 --> 0:11:13.040 remember being on Facebook and seeing a lot of people 0:11:13.040 --> 0:11:15.640 writing on his page and praying for you. 0:11:15.679 --> 0:11:18.720 I'm thinking about you. So I was wondering what was 0:11:18.800 --> 0:11:19.319 going on. 0:11:20.240 --> 0:11:23.160 I hope that it was maybe some virus, because viruses 0:11:23.200 --> 0:11:25.000 come and go. You might get really sick, but it'll 0:11:25.000 --> 0:11:26.640 be gone at some point. We hoped it was a virus. 0:11:26.760 --> 0:11:28.800 Didn't turn out to be a virus. We then thought, 0:11:28.840 --> 0:11:30.960 maybe it's not an immune disease, but you know, none 0:11:31.000 --> 0:11:33.079 of that immune disease tests were coming back, and then 0:11:33.400 --> 0:11:35.480 that sort of left us with, like, what's the other 0:11:35.520 --> 0:11:37.200 thing that could be caused in this sort of the big, bad, 0:11:37.320 --> 0:11:40.679 scary thing, and that was lymphoma. But the tests we 0:11:40.679 --> 0:11:43.480 were doing weren't giving us an answer. And that was 0:11:43.520 --> 0:11:46.240 actually one of the last really vivid memories I have 0:11:47.080 --> 0:11:49.880 from what then turned into hospitalization, where I just became 0:11:50.480 --> 0:11:53.480 more and more confused and less and less aware of 0:11:53.520 --> 0:11:54.199 what was going on. 0:11:55.800 --> 0:11:58.600 David and his family found themselves in an all too 0:11:58.679 --> 0:12:03.320 familiar and painful situation, gathered around a hospital bed, only 0:12:03.360 --> 0:12:07.760 this time David as the patient. Doctors performed a bone 0:12:07.760 --> 0:12:12.960 marrow biopsy, pet scans, MRIs a liver biopsy, among other tests, 0:12:13.400 --> 0:12:17.079 none of which provided clarity around the cause of these symptoms. 0:12:17.640 --> 0:12:21.920 David was given high dose corticosteroids, a common practice in 0:12:21.960 --> 0:12:25.040 the ICU when there is no clear path to treatment, 0:12:25.679 --> 0:12:29.839 and as the days and weeks progressed, David's illness was 0:12:29.880 --> 0:12:31.240 impossible to ignore. 0:12:32.720 --> 0:12:37.280 The physical morph was pretty incredible, and sometimes you have 0:12:37.360 --> 0:12:40.280 to see the pictures to really understand, but I'll try 0:12:40.320 --> 0:12:43.920 to describe what happened to me. So, because my liver 0:12:43.960 --> 0:12:47.040 and my kidneys stopped working, what happens is you start 0:12:47.080 --> 0:12:50.640 getting fluid all over your body. So I gained what 0:12:50.760 --> 0:12:53.280 we estimate to be close to one hundred pounds. Now 0:12:53.360 --> 0:12:56.760 imagine at the same time, you're not eating because you're 0:12:56.800 --> 0:13:00.040 so sick and you can't keep down any food, and 0:13:00.200 --> 0:13:03.520 your immune system is literally ravaging all your right organs. 0:13:03.840 --> 0:13:06.760 So as a result, you lose all of the muscle 0:13:06.840 --> 0:13:09.000 mass and any lean mass that you have. So you're 0:13:09.120 --> 0:13:13.120 left with a body that has one hundred pounds of fluid, 0:13:13.520 --> 0:13:17.400 has lost fifty to sixty pounds of muscle. You're just 0:13:17.559 --> 0:13:23.280 bone and fluid everywhere. You're just like a swollen skeleton. Basically, 0:13:23.720 --> 0:13:24.600 that's what I looked like. 0:13:26.320 --> 0:13:28.520 The pictures that we have of him in the hospital 0:13:29.320 --> 0:13:32.320 are not even close to how bad it was. And 0:13:32.440 --> 0:13:36.680 the reason for that was because David didn't want any pictures. 0:13:37.000 --> 0:13:40.440 That's not how he wanted to be remembered. David thought 0:13:40.440 --> 0:13:41.000 he was dying. 0:13:44.880 --> 0:13:48.400 David was airlifted back to his hometown to the hospital 0:13:48.440 --> 0:13:51.280 his father worked out of. He spent seven more weeks 0:13:51.320 --> 0:13:55.200 there until he improved just enough to be discharged, only 0:13:55.240 --> 0:13:58.640 to find himself right back where he was one month later. 0:13:59.240 --> 0:14:03.960 After months testing and hospitalization, David had a lymph node biopsy, 0:14:04.160 --> 0:14:07.839 which returned some surprising results. 0:14:09.280 --> 0:14:11.960 I wasn't talking, I wasn't doing anything. I was just 0:14:12.080 --> 0:14:15.240 laying there. So imagine there's eleven weeks of like my 0:14:15.360 --> 0:14:17.840 dad and my two sisters just being there for me 0:14:18.040 --> 0:14:21.480 through everything, helping me to breathe. I didn't want to breathe, like, 0:14:21.920 --> 0:14:24.880 just fighting for my life. And the first moment where 0:14:24.920 --> 0:14:26.560 like the three of them are not in the room, 0:14:26.920 --> 0:14:29.200 it's like the moment when the sturse comes in. So 0:14:29.240 --> 0:14:31.120 she's like, you know, I got the news. I just figured, 0:14:31.160 --> 0:14:33.360 you know, i'd deliver it to you. And she's like 0:14:33.400 --> 0:14:35.720 good news. It's not lymphoma. And then she looks at 0:14:35.720 --> 0:14:37.240 the piece of paper because she like doesn't know what 0:14:37.280 --> 0:14:39.480 the word is, like she's never seen it. She's like, uh, 0:14:39.640 --> 0:14:40.800 you have something called castlemans. 0:14:40.840 --> 0:14:42.840 I'm like, well, is that good? Is that bad? She's like, well, 0:14:42.840 --> 0:14:45.480 it's not lymphoma. Like it's great, I guess. 0:14:46.520 --> 0:14:48.600 And so here I am by myself and I'm like great, 0:14:48.640 --> 0:14:50.920 it's like Castleman's like, I don't I'm a med student, 0:14:50.960 --> 0:14:52.560 but I don't remember learning about it. 0:14:52.560 --> 0:14:54.479 I think maybe I heard it once in my life. 0:14:54.840 --> 0:14:58.080 So good news. We know what it is. So what 0:14:58.080 --> 0:15:00.080 do you do when you first hear about something? I 0:15:00.200 --> 0:15:00.560 learn more? 0:15:00.600 --> 0:15:01.200 You google it. 0:15:01.520 --> 0:15:03.320 Then you see the Wikipedia page. 0:15:03.840 --> 0:15:05.600 The way that it was described was that it was 0:15:05.600 --> 0:15:07.840 just uniformly fatal and everyone died within a couple of 0:15:07.880 --> 0:15:10.960 years of diagnosis. And I was just devastated to read 0:15:11.000 --> 0:15:11.880 about this disease. 0:15:12.560 --> 0:15:16.400 Castleman disease is a rare condition that causes the immune 0:15:16.440 --> 0:15:20.880 system to go into hyperdrive, attacking organs and bodily pathways. 0:15:21.360 --> 0:15:24.400 In the United States, they're only about five thousand new 0:15:24.480 --> 0:15:29.040 cases annually, with each prognosis varying based on the subtype. 0:15:29.400 --> 0:15:33.840 David was unfortunately diagnosed with one of the most aggressive variations. 0:15:33.880 --> 0:15:37.040 Desperate to quickly find a treatment that worked, David was 0:15:37.080 --> 0:15:42.000 transferred to the hematology and oncology ward at Duke in Durham, 0:15:42.080 --> 0:15:42.920 North Carolina. 0:15:43.760 --> 0:15:46.560 When I was at Duke for my second hospitalization, I 0:15:46.680 --> 0:15:50.320 was so sick that my doctors encouraged my family to 0:15:50.320 --> 0:15:51.120 say goodbye to me. 0:15:52.080 --> 0:15:55.280 It was shocking. You know, we were still very young. 0:15:55.720 --> 0:15:58.920 It was the time in our lives where we were 0:15:59.040 --> 0:16:01.480 energized to you know, we were healthy, we were young, 0:16:01.560 --> 0:16:03.760 we were ready to go conquer the world. And to 0:16:03.840 --> 0:16:09.120 see the person among us that seems the strongest transformed 0:16:09.200 --> 0:16:14.480 so abruptly was startling. It was hard to process. I 0:16:14.520 --> 0:16:17.120 didn't think it was even real, like, surely he'll just 0:16:17.160 --> 0:16:22.560 be fine soon. And that changed dramatically for us when 0:16:23.280 --> 0:16:25.280 they ultimately told him that they didn't know what else 0:16:25.280 --> 0:16:30.880 they could do. I'll never forget the moment when a 0:16:30.960 --> 0:16:31.680 priest came. 0:16:31.560 --> 0:16:33.720 In to read me my last rites. That was in 0:16:33.800 --> 0:16:35.920 November of twenty ten. I was twenty five years old. 0:16:36.480 --> 0:16:40.280 Then a few of his friends came in and ultimately 0:16:40.320 --> 0:16:44.200 hugged him goodbye. And I think everyone tried to keep 0:16:44.440 --> 0:16:47.520 a positive outlook, you know you're going to be okay. 0:16:47.640 --> 0:16:51.680 And I remember I couldn't really keep it together. David 0:16:51.720 --> 0:16:53.960 and I talked about that a lot. He says that 0:16:55.080 --> 0:16:57.360 he almost knew how bad it was when I came 0:16:57.400 --> 0:17:01.240 in the room and you saw my face because I 0:17:01.240 --> 0:17:05.720 couldn't hide help. Horrifying it was to see him in 0:17:05.760 --> 0:17:06.280 that state. 0:17:07.119 --> 0:17:09.440 Yeah, And when you're administer your last rods, when you 0:17:09.440 --> 0:17:12.560 say goodbye to your family, you don't do it like 0:17:12.960 --> 0:17:15.560 thinking that I'm going to get another shot at this. 0:17:15.720 --> 0:17:16.880 It's like this is it. 0:17:23.880 --> 0:17:27.000 David, who had been the physical ideal of athleticism and 0:17:27.080 --> 0:17:32.320 health just months before, was now unrecognizable, seemingly at the 0:17:32.400 --> 0:17:35.280 end of his fight with Castleman, Caitlyn traveled to visit 0:17:35.400 --> 0:17:38.600 him in the hospital. Despite no longer dating at the time, 0:17:39.040 --> 0:17:41.240 there was still a connection between them. 0:17:41.880 --> 0:17:44.639 If this was going to be the last time, I 0:17:44.720 --> 0:17:47.840 wanted to talk to him, just to hold his hand, 0:17:48.080 --> 0:17:49.639 to see how he was doing. 0:17:50.119 --> 0:17:53.399 I can barely form sentences. I don't know what the 0:17:53.440 --> 0:17:57.119 heck's going on. I'm confused, and this is going to 0:17:57.119 --> 0:17:58.520 be the last time Caitlyn's going to see me. I'm 0:17:58.520 --> 0:18:00.639 not going able to tell her the things that I 0:18:00.680 --> 0:18:03.320 want to tell her. So she came to visit me 0:18:03.480 --> 0:18:06.800 multiple times, and each time I had somehow communicated to 0:18:06.840 --> 0:18:08.679 my sisters that I didn't want her to come. 0:18:08.520 --> 0:18:08.960 In the room. 0:18:09.840 --> 0:18:11.960 I thought that maybe she didn't know that I was 0:18:12.000 --> 0:18:14.800 trying to see him, because you know, I had his 0:18:14.840 --> 0:18:16.399 phone number, and I would reach out and I just 0:18:16.640 --> 0:18:18.120 you know, wouldn't hear back from him. 0:18:18.600 --> 0:18:19.520 So then I would reach. 0:18:19.320 --> 0:18:22.320 Out to his sisters and just see And I did 0:18:22.359 --> 0:18:24.679 think that they were maybe they were mad at me 0:18:24.840 --> 0:18:27.639 because I broke up with him, and you know, I 0:18:27.680 --> 0:18:29.919 thought maybe there was like something like petty, but like 0:18:29.960 --> 0:18:30.560 there wasn't. 0:18:30.640 --> 0:18:32.240 They were just protecting their brother. 0:18:32.880 --> 0:18:36.400 I regret that, because who cares if I didn't look 0:18:36.440 --> 0:18:38.399 like my former self? And who cares, you know, if 0:18:38.440 --> 0:18:39.639 I didn't say the right words. 0:18:41.400 --> 0:18:44.200 David had now come to the brink of death twice 0:18:44.440 --> 0:18:46.399 in a span of three months. 0:18:46.760 --> 0:18:49.639 Turned out that there were no FD approved drugs, but 0:18:49.680 --> 0:18:51.320 there were a couple of drugs that have been tried, 0:18:51.359 --> 0:18:54.200 particularly chemotherapies, and one of them worked for a little 0:18:54.200 --> 0:18:57.320 bit of time, and then I started to relapse while. 0:18:57.119 --> 0:19:00.920 The chemo suppressed David's immune system stopped been Castleman from 0:19:00.920 --> 0:19:04.439 attacking his body. It also took a heavy toll on 0:19:04.520 --> 0:19:08.240 David's ability to fight, but there was one last hope 0:19:08.280 --> 0:19:10.359 waiting for him in Arkansas. 0:19:10.600 --> 0:19:12.560 I learned that there was the world's expert was in 0:19:12.600 --> 0:19:16.080 Little Rock, Arkansas. So I traveled out to the Mecca 0:19:16.200 --> 0:19:18.720 Castle and Disease. I've been given the plan like I'm 0:19:18.720 --> 0:19:20.359 going to be on an experimental drug. It was going 0:19:20.400 --> 0:19:22.040 into going a clinical trial and everyone and it was 0:19:22.040 --> 0:19:23.439 working for a bunch of people, and I was like, 0:19:23.440 --> 0:19:25.719 oh my gosh, Like, you know, we'd been praying for 0:19:25.760 --> 0:19:27.879 this for my mom and we never got it. But 0:19:27.960 --> 0:19:30.080 now here we were for me, like maybe we got this. 0:19:30.080 --> 0:19:32.320 This is like the drug we've been waiting for. And 0:19:32.800 --> 0:19:35.680 you know, just before I was supposed to fly back 0:19:35.720 --> 0:19:38.240 to North Carolina, which is where my family lives, to recover, 0:19:38.840 --> 0:19:41.200 the test results came back from my Little Rock visit 0:19:41.240 --> 0:19:43.439 that my labs were all horrible and my organs were 0:19:43.440 --> 0:19:47.679 all shutting down again. So we actually were we were 0:19:47.680 --> 0:19:50.200 actually in the airport in Little Rock getting ready to leave, 0:19:50.200 --> 0:19:57.000 and then we just went back to the hospital. That 0:19:57.119 --> 0:19:59.920 was the beginning of about a seven week long hospitalization 0:20:00.040 --> 0:20:00.920 and where I. 0:20:00.840 --> 0:20:02.399 Sort of went off the cliff again. 0:20:03.440 --> 0:20:07.000 My gosh, you you had to go through this cycle 0:20:07.080 --> 0:20:11.280 so many times. How did you find the strength in 0:20:11.359 --> 0:20:13.800 those moments to just keep going? 0:20:14.040 --> 0:20:14.639 Yeah? 0:20:14.960 --> 0:20:17.639 I think for me, there were a few things that 0:20:17.800 --> 0:20:20.879 helped me to keep fighting. I mean, for one, I 0:20:20.960 --> 0:20:24.040 felt like I had this unfinished business to do. Like 0:20:24.080 --> 0:20:26.400 I promised my mom, I was going to find drugs 0:20:26.400 --> 0:20:27.920 for people suffering from diseases. 0:20:28.400 --> 0:20:29.520 And I'm a third year med student. 0:20:29.520 --> 0:20:33.000 I'm sort of like finally somewhat trained to start helping people, 0:20:33.040 --> 0:20:35.280 and then now I'm going to go out and never 0:20:35.359 --> 0:20:37.440 be able to do the thing that I promised my mom. 0:20:37.880 --> 0:20:41.040 Another one was just the amazing support I got from 0:20:41.040 --> 0:20:43.800