The Medical Detectives - Mary's Story: The Miracle

Episode Date: January 29, 2025

This week’s episode is an extraordinary journey of resilience, groundbreaking medical innovation, and the power of hope. We welcome Karen, a devoted mother who fought tirelessly for her daughter Mar...y’s survival, and Dr. Brian Druker, the pioneering physician-scientist who helped develop Gleevec, the revolutionary cancer treatment that saved her.Mary was diagnosed with an incurable form of leukemia as a child and given only a few years to live. But thanks to a medical breakthrough and the unwavering determination of her family, she not only survived—she thrived. Now, decades later, she shares her remarkable journey, from clinical trials to living treatment-free, to becoming a mother herself.Dr. Druker joins the conversation to reflect on the scientific and personal triumphs that changed the landscape of cancer treatment forever. This is a story of perseverance, medical miracles, and what happens when you refuse to give up—even when the odds are stacked against you.Tune in for an inspiring episode that proves sometimes, the impossible becomes possible.

Transcript
Discussion (0)
Starting point is 00:00:00 Erin, it is so good to see you again. I've decided I'm going to call you Erin now because I feel like we've been doing this enough now that you're more than Dr. Nance to me. I would love it if you called me Erin. And, you know know I'm just so thrilled to be back for another week of the most incredible medical stories. I am so excited about this week's episode. It's a wild ride. This is really a special moment for me because we are going to interview a physician who when when you're a kid and you say you want to be a doctor, this is the doctor you have
Starting point is 00:00:45 in your mind, who you think of. And it inspires me, it reminds me of that kid who wanted to become a doctor to do this type of thing. So, it was just absolutely like I am fangirling in my own episode, which is incredible. I love a good fangirl moment. In addition to interviewing this just absolutely amazing doctor, we will be interviewing a parent. And from a parent's perspective, fighting for a cure for your child, I think it's an incredible story of hope and resilience and
Starting point is 00:01:23 never giving up the fight. Definitely. I feel like, you know, we've recorded the episode now. Shocker, guys. And one of the things that I came away from it, you know, I'm not a doctor. I don't work in the medical field. But I think the message that this episode can give anyone, wherever you are in your life, is that you don't have to give up on hope. You don't have to give up on doing the impossible regardless of what, you know, the world may say to you. And I think for me, I found it personally inspiring that sometimes things are hard, but they're hard for a reason because you are meant to do something great.
Starting point is 00:02:00 Yep. So can't wait to get into it. Yes, let's go! Yeah. So can't wait to get into it. Yes, let's go. Hi, Karen. Thank you so much for joining us on Medical Detectives today. Thanks very much for having me. I'm excited to share this today. I always start the podcast by asking our guests, what is your intention in sharing your story? I would say to help other people who are going through or might someday go through some of what we've gone through as a family
Starting point is 00:02:30 and also to encourage people that sometimes in the worst situations the best things happen and sometimes you got to look for it and sometimes it just really shows itself and there's no way you can deny that some good has come out of something awful. Now I'm really excited. Karen, could you take us back to the beginning, back to over 30 years ago, when you first found out you were going to be having Mary.
Starting point is 00:03:02 Can you talk about that excitement you had? Oh yeah, she was baby number four, girl number two. So she was coming into a family that was very excited to meet her. She's got two older brothers and then an older sister. And they were all born in the 1980s, so they're all pretty close in age. So there was a lot of excitement surrounding her birth
Starting point is 00:03:22 and she was born a nice big, healthy baby at over eight pounds and just healthy as can be, you know, just everything was great. She was doing well. She was a good little nurse. She loved her siblings. She met all of her milestones in the early days. So everything looked pretty good. And then you're a seasoned mom at this point, right? When did you first start to notice that something about Mary was just different from your experience with your other kids?
Starting point is 00:03:52 So at about 18 months, we started noticing some changes. She didn't want to eat anymore. She would eat like candy and sweets, but she really wasn't interested in any other favorite foods that she used to like. She would just sit at the table and just push everything away. She stopped gaining weight probably due to the lack of eating. And she still played and she still had a great attitude and she was wonderful and delightful. But she got a lot of low grade fevers. She had, you know, just lethargy sometimes.
Starting point is 00:04:23 She was just kind of quieter and just something wasn't quite right. And I took her to the doctor a number of times saying, you know, she's got another fever and I don't know if it's an ear infection coming on or whatever it might be, but just, you know, it always got, not dismissed in an ugly way, but just, you've got that feeling that the pediatrician was like,
Starting point is 00:04:41 yeah, you know, we get a lot of paranoid moms in here. And I always would think to myself, but I'm not a first time mom. And I know what we're looking for and what seems right. And just why would you just stop growing all of a sudden? And I got a lot of different things, but it could be this, it could be that, and she could be a late bloomer and, you know, this is not abnormal. And so we would just keep kind of going on. And we put her on a course of antibiotics if the fever didn't go away. And we just kept trying to get her to eat. How old was she at this time? That was between 18 months and say two and a half.
Starting point is 00:05:15 And when you looked back at her weight and everything that as we would track as she was growing, it was at about 18 months that the trajectory just fell off. A lot of people will talk about a mom's gut feeling and a mom's gut instinct. What did that feel like for you? And how did you come to terms with believing and trusting your instinct? Well, I wanted everything to be okay, you know, and I wanted her to be fine. I just knew there was something going on. And I would take her to the doctor and they would say, no, we don't see anything. But you know who had some instinct was her dad.
Starting point is 00:05:58 And he would often say to me, something's wrong with her. And he even would guess sometimes at what it might be. And he would just say, something is not right. This is serious. And I would dismiss it because I was always like, I was the positive, happy one and he was the more serious. I always saw the worst in every scenario. It was my job to say, oh, I'm sure it's going to be fine.
Starting point is 00:06:19 And I was trying to convince myself as much as I was trying to convince him. There were certainly happy times in there. I mean, we had Disneyland passes. We went to Disneyland all the time. We did all kinds of fun stuff as a family. There were plenty of happy things. She played with her siblings and everything. Like the rest of her life was pretty good.
Starting point is 00:06:34 She just wasn't eaten and she wasn't grown and she was getting a lot of little fevers. So you kind of continue this pattern of low lying type symptoms, But what was it that really rang the alarm? So it was around Christmas time, it was mid-December, and she was about two and three quarters years old at that point. And we were at the kids, she and her sister were, I was taking some photos of them, they were sitting on the master bed, you know, and I was taking pictures of them in their little matching Christmas sweaters. And I went to pick
Starting point is 00:07:07 her up and I felt her stomach felt weird, her abdomen felt weird. And so I laid her on her back and lifted up her little shirt and I started pressing down on her abdomen and I could feel this mass in there. Like it was big enough and significant enough that I could get my hand under it. Almost like if she had an alien inside of her and I could kind of press down on her stomach and get my hand underneath whatever this thing was and almost like hold it. I was like what is that? So I thought maybe it's a blockage, you know, maybe it's poo. Maybe this is what's been causing all the not wanting to eat. But I did call, and this was like maybe 8.39 PM. So regular old doctor's offices were closed.
Starting point is 00:07:48 And so I called this, you know, there was an advice nurse hotline that I called with our medical plan. And they said, well, does she seem to be in any pain? I'm like, no, she's fine. She's playing with her sister. And they said, well, if she doesn't seem uncomfortable with it, then let's just make you an appointment for first thing in the morning. So next morning we go, we see a different pediatrician than we normally would see
Starting point is 00:08:09 because he was on duty that morning. And he said, yeah, you know, it could be a blockage, could be, so he recommended that we go home and give her an enema. He said, yeah, let's do that. And then call me right back and you let me know what that produces. So we go home, we do that. We call the doctor back and say nothing came out. Like we did the two enemas and we got nothing. He said, okay, I'm going to have you go to the hospital and you're going to get an ultrasound and I want you to go, I said, should I like, just go right now. And he said, there's an oncologist that's going to meet you there.
Starting point is 00:08:48 And even then, in my mind, you know what I was thinking? Oncologists, they probably just take care of all the growths. Like if there's something wrong where it's not supposed to be, they'd probably just have the oncologist do that, even when it's not cancer. I knew what an oncologist was. So even then, I still wasn't that worried. I was like, all right, let's go get this show in the room, figure out what's going on.
Starting point is 00:09:08 So we got to the hospital, they did an ultrasound. And while that was going on, the oncologist came in during the ultrasound. And they sent us upstairs with Mary and they sat us down in a room. us upstairs with Mary and they sat us down in a room and they, the doctor said that was her spleen that you were feeling. She said, what happens is your white blood cells are going crazy and they need somewhere to kind of set up shop and a spleen I learned is not, it's not like a stomach where it's an organ that has a hole in the middle. It's a solid filtering type thing like a liver.
Starting point is 00:09:44 So it was just these white cells were set up there and it was just expanding. So her little spleen, which should be tucked underneath her rib cage on her left side, was all the way over to the opposite side of her abdomen, just filled with white blood cells. And that was when she said, your daughter has leukemia. And I just screamed like, no, no. I mean, her dad was right. And I was so positive it wasn't anything bad. It was just going to be, you know, the worst case scenarios are going to have to make
Starting point is 00:10:20 an incision in this tiny little baby and take this blob out. And then she was going to have a scar. That was the worst in my head. But they told us what they suspected. She took the baby from me immediately. She took Mary, the nurse did, and they started hooking her up to an IV. And they basically told us that with her white count being this high, her blood is just like going to stop moving in her body because she's got so many unhealthy white cells that are not mature and can't do their job. But eventually she's going to become so thick with white cells that like her blood is going to stop
Starting point is 00:10:55 moving. So her white cell count at diagnosis was 525,000. And just to put that in perspective, I know Dr. Nance, we don't need to give you the perspective, but you know that the normal white blood cell count is between five and 10,000. And if you get appendicitis or a really bad infection, it might go to 20 or 25,000. So 525 was pretty much of a record. That was a lot. So at that point, the doctor knew what she suspected, but she ran a few more tests and it was much longer before we found out that she had CML, which is chronic myelogenous or chronic myeloid leukemia. Very common in older adults, very rare in children. The prognosis was that her leukemia was very advanced. So in other words, it had gone a long way without being diagnosed. And that's not anybody's fault. I mean, we knew something was wrong, but they don't take every
Starting point is 00:11:57 single child who comes in with a failure to thrive and a lot of low grade fevers and say, oh, it's probably leukemia, let's do a bone marrow biopsy. It's just, they kind of wait until they can't figure out what else it might be. And then eventually things escalate to the point where they decide to try something or they can, they can finally see like in a large spleen or whatever it might be that tells them, yes, this is it. So in the beginning, because it was so advanced, they said, look, we're going to do everything we can to try to get her white cell count down. But it's so high that, you know, it's almost as if her blood is going to be so thick with
Starting point is 00:12:33 immature white blood cells that if she gets any kind of an infection or any more white blood cells that aren't working, she's going to die because she doesn't have the cells to fight it. So there's that. But if we get through that and we can get her white count down below 100,000, then we're going to add another drug and we're going to start doing these different things and try to reduce it. And the hope is that we can get her on a regimen of interferon, alpha interferon, and kind
Starting point is 00:13:00 of maintain it for a while. But they said the average is between three to five years on interferon before it stops working. They said she probably has a little bit less than that because she was so advanced. Wow. I feel like anything I'm going to ask is, it's going to be hard to talk about. So I apologize for that. What was your, I mean, for lack of a better way of saying it, but like, how did you feel about this? Like you, obviously you had alarm bells going off for such a long time and everything just went on. And then now all of a sudden your worst nightmare is confirmed. I mean, I just, wow. Well, you know, I think one thing I heard over and over from people is
Starting point is 00:13:46 I couldn't do what you're doing. I couldn't be this strong. And it's like, well, you could because you don't have a choice. And it wasn't like they said, take 20 minutes and think about this and we'll come back and decide what to do. It was like, here's what we're doing. And it's go time. And it was like literally there was something for us to be doing every minute,
Starting point is 00:14:04 whether it was, you know, something for us to be doing every minute, whether it was helping her get to the bathroom, it was worrying about the other three kids, which we had just the most tremendous support from our friends and family. They brought clean clothes to the hospital. Mary's godfather, Steve, who didn't have any kids of his own, wasn't married, had never really been around small children, but he loved Mary, and he came to the hospital and stayed one night after like a week so that I could go home and sleep in my own bed for one night. And what a huge difference that made.
Starting point is 00:14:36 Just, that's the advice I give to parents now when they're first diagnosed. It's like, bring a lot of snacks, accept all the food and things that people want to bring you and then go home every couple of nights and sleep in your own bed, even if it's just for four or five hours. The lack of sleep in a hospital is so hard on people and it takes away your ability to cope when you're not rested. So something that I remember going down the elevator that day when Steve came to stay with Mary so we could go home.
Starting point is 00:15:05 And I remember riding down the elevator and slumping to the floor and thinking, I might just want to check out. Like, I don't know that I can do this. This is so sad and so awful. And it's just turning our whole world upside down. But the next morning after four and a half, five hours of sleep in my own bed, I was like, what was I thinking? I got this. You know, but sleep is important and it's something you hours of sleep in my own bed, I was like, what was I thinking? I got this, you know, but sleep is important and it's something you don't get in a hospital. So they sent us home after the 16 days or whatever it was in the hospital.
Starting point is 00:15:33 They sent us home with interferon shots and it was back before they had those nifty pens that you just click and, you know, it administers the medicine, it's all pre-dose. I used to have to draw the liquid into the syringe, pour it into this little bio-filt powder, used to have to draw the liquid into the syringe, pour it into this little bio-fill powder, swirl it around, draw it up in another syringe, get her ready, do the injection.
Starting point is 00:15:51 And this was five nights a week she got the interferon. And then she'd get two nights off. And even if you called her from upstairs playing or watching a movie with the other kids and having the time of her life, if you said, Mary, it's time for your poke, she'd come right down. Never fuss, never complain. In fact, the first couple of days, we were so nervous about giving
Starting point is 00:16:11 her her shots that we called one of the neighbors down to help kind of like hold her still. And then we would cry. I mean, we would just, it was so sad. The neighbor would hug us and we would hug each other and we'd hug Mary. And so after a few days, we were okay without the neighbor. And then Mary came up to us about an hour after shot one night and she was like, I'm sorry. And we said, what are you sorry for? And she said, I'm sorry I make you cry. And we're like, okay, that's it.
Starting point is 00:16:36 No more crying. Save that for ourselves. I mean, she really did feel badly about, and she was so little, you know, but she has such a big heart. That is, my heart is breaking. It's been a long, long time and it still breaks my heart that she's crying. badly about and she was so little, you know, but she has such a big heart. So it's been a long, long time and it still breaks my heart that she felt badly about. So we didn't cry anymore with her. So we just kept giving her the shots and we knew someday the drugs would stop working,
Starting point is 00:16:56 but there was one other option. They told us about the interferon that we could try that and everything, but they said really the only cure is a bone marrow transplant. And we didn't really know anything about bone marrow transplants. They kind of explained it to us, sounded pretty straightforward, but they said, you know, we've got to find a match.
Starting point is 00:17:14 So none of us in the family were close enough to match. So then we went to the next step, which is to look for a matched unrelated donor. Back then they were only testing on six antigens. So we found somebody after, and it took forever. It was a grueling few months, or actually it was probably close to a year, because they only test one person at a time. So when they look like a preliminary match, then they'll go in for more testing. It took a really long time back then, like almost six weeks sometimes to get the results. And then we found it, oh yeah, not quite a match. So then we'd go to the next person. But we did find someone who was a five of six antigen match.
Starting point is 00:17:48 And in my mind, again, positive Patty over here was like, ding dong, the witch is dead. We're going to get this taken care of. So we went to Los Angeles. We met with a doctor at Children's in LA because that's where they did the bone marrow transplant. And to say that it felt like being hit with a ton of bricks is an understatement. He was very straightforward to the point of being blunt about what we could expect. Because of the advanced stage of her disease and her age
Starting point is 00:18:16 and a few other factors that her chances of surviving the bone marrow transplant were between five and 10%. And he said, one of two things is gonna happen, you know, chances of surviving the bone marrow transplant were between five and 10%. He said, one of two things is going to happen. But he said, the big thing that we worry about is the graft versus host disease. If you're familiar with that, it's basically if I take my heart and I put it into your body, your body's immune system is going to look at it and say, oh, this doesn't match up. This is foreign. It'll attack the heart, which is why you have to take cyclosporine or whatever anti-rejection meds. But if I put my whole bone marrow into your body
Starting point is 00:18:51 and replace yours with mine, I'm giving you my immune system and now it's looking at your whole body as foreign and it attacks everywhere. And he said, we don't have any idea why or when it's gonna happen. I've seen people that are great matches who have horrible graft versus host disease, and vice versa.
Starting point is 00:19:08 People who are mediocre matches and don't have any. But he said it's awful. And he described it, which I will not do here. But I just remember at the end of that meeting, I went in there so excited. It's like, let's get the show on the road. And walked out of there thinking, that guy was mean as a snake. But he was being very honest with us. And he said, I'm not telling you that a death from leukemia is any prettier than a death from breast versus substance disease. It's dreadful. But he said, I
Starting point is 00:19:41 just I need you to know all this. And I also need you to know that you can't say no now and then come back to me when she's failing and when her leukemia has reared its ugly head again. I can't do it then. So it's now or never. And we went home and we talked about it and I wanted to do more research. But again, Mary's dad had this thing about knowing what was best for Mary. And he said, I don't want to do it. And I said, can you give me a couple of days to give it some more thought? And he said, yeah, yeah. So ultimately that was the decision
Starting point is 00:20:14 that we came to. We decided that we would not do what we really felt was going to escalate her death and make what time she had with us just awful. And we said, how old was she when this? So that was still early. That was probably when she was four. Okay. So she's four years old, has this opportunity and it just because she was in the right health level to get it done.
Starting point is 00:20:38 Is that right? No, no, no. I mean, this was once they determined what she had, the next step was to try to find a donor for the bone marrow transplant. Gotcha. And transplant. How long did it take to find a donor? It was probably a full year by the time all was said and done. So once we got the news from the doctor, the transplant doctor, we just decided and we're very peaceful about the decision that this wasn't the right thing to do. We felt like we were going to lose her either way, but we didn't want to make it worse for her. What a heartbreaking decision to have to make. Like knowing that you're going to lose your child.
Starting point is 00:21:11 Public school or private school? Should I cut their hair short or leave it long? Who was asking me to make this decision? We didn't feel equipped to make the decision, but ultimately when you're not equipped like that and you still are the decision maker, you've got to go with your heart. And that's what we did. So we elected not to have it. He chastised us and said, you know, this is the only way to cure her. Like, I know, but it's also kill her.
Starting point is 00:21:33 And he goes, I know, but this is it. And you just don't think you're ever gonna be faced with something like that, that you're totally unqualified to decide. But there's a reason they were giving us the option because we didn't get options on the other stuff. It's like, we're taking your baby and we're looking her up to an IV and we're doing this
Starting point is 00:21:49 and we're doing that. But this time it was like, we need to talk to you about this. So we knew that they were. That's the duty of a doctor is to talk about the risks and benefits. Yes. And there are some times when the risks outweigh the benefits and it is the patient or in your case the patient's family that gets to make that determination. Yeah, which is, I feel like we were totally ill equipped for that, but we did.
Starting point is 00:22:18 Once we made up our minds, it was the right decision. We were just like, nope, we're going to make sure she has as much fun as possible. We're going to go to Disneyland all the time. We're gonna do all the things she loves, doing our best to make sure that we, the kids all had great memories together and she would have little things that would go wrong sometimes
Starting point is 00:22:35 and the other kids would get really worried about her, but they'd be so sweet to her when she'd get home from the hospital. They couldn't wait to have her back and they put out all of her favorite stuff upstairs for when she came up, you know, she'd come home and they immediately want to take her upstairs to the playroom and say, look, we got all your stuff ready for you. And she'd be so excited. So, yeah, we made the decision that we would go with not doing the bone marrow transplant because we felt
Starting point is 00:22:59 like that would hasten her death, if anything. So we decided to accept that this is ultimately what's gonna happen, but we're not gonna do anything to speed it up. And we just decided to make Mary's life as positive and bright and fun as possible. If she only had a few more years, those years were gonna be just filled with joy. And actually one of the things we did
Starting point is 00:23:25 to make sure that that could happen was going to summer camp. Probably in the same conversation where they said your daughter has leukemia and we need to start treating her immediately. They also said, oh, by the way, in the summertime, there's this camp you have to go to. And I was like, can't even think about that. Also hate camping. And they're like, no, no, no, it's not that kind of thing. Yeah. Yeah. I like to go to hotels, but she goes, no, no, no.
Starting point is 00:23:51 There's this group of parents that put on this camp and it is really, really important for all four of your kids and all four. Okay. Yeah. So this is a little camp that was started in 1982 by several families at the Children's Hospital in Orange County. They got together and they wanted their patients to be able to go to summer camp. So they worked something out with the YMCA and with a little funding from the American Cancer Society. And that first year they took, I want to say
Starting point is 00:24:19 10 or 12 kids and each one got to bring one parent and they just did normal camp stuff but anyway years later in 1991 well it was probably 92 when we went to the camp for the first time in the summer and for any family that's facing a pediatric cancer diagnosis it's important that they find something like this and for anybody who wants to support families like that it's important that they recognize the importance of doing the same thing for the siblings. So whenever anybody wants to do anything for sick children they just want to give to the sick kid. So I got very involved with this camp because I realized at the end of our first camp weekend I found out that the whole thing, which was magnificent for all four of my kids, they had the best time. I found out that the whole thing, which was magnificent for all four of my kids, they had the best time.
Starting point is 00:25:05 I found out that the entire operation, all the counselors, all the people who organized it, the people who did the fundraising, nobody got paid. It was all volunteers. And that just blew me away. That changed so many things for me because it made me realize that, well, if they can do that, I can do that. You know, I could give back in ways that just never occurred to me, that you would just do something like that for free.
Starting point is 00:25:28 And I was in a position to do it. And it was therapeutic for me because it made a difference for these other families. But the biggest thing about this camp as opposed to some other oncology camps was they didn't separate the patients from the siblings. So some camps, the siblings have their own camp, but they're just with other siblings.
Starting point is 00:25:45 They're not with their brother or their sister. Where our camp includes, then if you're a four year old boy, you go in the cabin with all the four year old boys, whether you're a patient or a sibling. And it also includes families who are done with their battle because they can encourage other families about making it through treatment.
Starting point is 00:26:02 And it also includes families whose child has passed away. Because those families, and we saw this so many times over the years, can offer support and understanding to a family who's facing that. And that happens all the time. But it just means so much to the whole family to see that there's a place you can go, you can laugh, you can make crazy chemo and vomit jokes, you can joke about radiation scars and you know tattoos and all that
Starting point is 00:26:29 where a lot of people don't want to see you having a good time because you're supposed to feel guilty like you're just supposed to be sad all the time. But this was a place where you could go around people who understood and it didn't seem weird if you didn't if a kid didn't feel like wearing their wig or if they wanted to you know pop off their prosthetic arms so they could hop in the pool you know everything was just normal there for them and it was everything you got to do at a regular YMCA camp. You kayaked, you boated, you swam, you did the ropes courses, you rode horses, all the arts and crafts and it's all free to these families. So that was an amazing bright spot in this whole journey.
Starting point is 00:27:06 And unfortunately there were more hard moments as well. And around the time Mary was about three or four, we had some significant side effects to the high dose of interferon. We had to titrate the dose to try to figure out what was actually gonna keep things in check. And it did, you know, it kept things under control, which was a miracle in itself because, you know, we basically we lost out on the three to five years of chronic phase.
Starting point is 00:27:29 She was already advanced into this accelerated phase. To give you guys some background about the drugs that we're talking about, I want to talk about something called an interferon. Interferons are proteins that your body naturally makes to help defend against infections, especially viruses. They're like your immune system's early warning signal, rallying the troops to fight off invaders. Scientists have figured out how to make synthetic versions of these proteins to use as medications to fight cancer, MS, and some autoimmune diseases.
Starting point is 00:28:00 Interferons can extend cancer patients' lives by years, but they come with some hefty side effects, like flu-like symptoms, blurred vision, anemia, hair loss, depression, among other things. Okay, back to the story. The interferon was causing a lot of side effects, like seizures, a lot of seizures. Very small ones, myoclonic jerks, you know where, you know how sometimes when you're falling asleep and all of a sudden you feel like you're falling? Yeah, yeah, yeah. She would do that like dozens of times every day and then she'd be kind of spaced out for a little while after. And her speech,
Starting point is 00:28:32 which was, you know, as a three-year-old was not that clear, it was pretty clear, but it started getting worse. And I was like, you know, she's like slurring so much. It's almost to where we can't understand anything that she's saying. And so at that point, they sent us to a pediatric neurologist who ran a bunch of tests, turned up, our oncologist had already run, but she just wanted to be sure. You know, he said, look, I have tons of patients with MS
Starting point is 00:29:02 and all kinds of people with different things that are on interferon. Interferon doesn't cause these symptoms. But one day it got so bad that I just called the doctor, our oncologist, and I said, we gotta take her off this or lower the dose or something. This is just to the point of, you know,
Starting point is 00:29:18 she will repeat the same thing a thousand times until we get what she's saying. So she's super tenacious, but you know, I can't understand her anymore. She's having all of these seizures. And today, the day I called, she'd had some hot food in front of her and she had one of those myoclonic jerks
Starting point is 00:29:34 and the food went flying and she got, you know, not burned like third degree or anything, but it hurt. You know, and the little girl was sitting next to her, got beans on her too, and she was crying and it was all this screaming. I was like, okay, this is it. So I just packed Mary up, we got in the car and went home and made the phone call. So we agreed to cut the dose in half, which we did.
Starting point is 00:29:52 After about two weeks or three weeks, somebody came up to me and said, hey, Mary just talked to me and I understood what she said. But little by little, everything started getting better. The seizures were under control. We got to take her off the seizure medication that we'd had her on, really things improved. But guess what else? The white count started to rise again. So at that point, this is what I consider
Starting point is 00:30:14 a little miracle along the way because it bought us some more time. There was a second drug that was being tested on CML patients and was seeing some success in some of them and it was Arise. So low dose cider, I don't know how to pronounce it. I always said cider, or bean or cider, or oven, but they called it Arise. And it wasn't even really a next most promising treatment.
Starting point is 00:30:33 It was buying some more time. So now she went from having one shot five times a week to having two shots, five times a week and two shots on the weekends. So this was an everyday thing. She continued to just hang in there. You know, there would be some ups and downs, and if she got a fever, we'd have to be hospitalized. But surprisingly few hospitalizations.
Starting point is 00:30:54 So for the most part, she was tired, she was weak, she didn't feel well. I don't know if you know any adults who've ever been on interferon. A lot of them just say, I'd rather die than keep feeling like this. But I think in Mary's case, she just never knew what it was like to feel good. And she always felt crummy and she just never complained about it. But we had a little yellow beanbag chair that we traveled from classroom to classroom each year as she moved on in school.
Starting point is 00:31:23 And she would, when she got tired, she would just go lie down. So some days when I'd come to pick up the kids at school, I'd only get three of them out there, and the teacher would say, she's napping in the classroom, and the teacher's aide is in there with her. So, and the school was so wonderful and so understanding, and I think a lot of that was because Mary,
Starting point is 00:31:39 was she was just funny, she had a great sense of humor, and she really wanted to do well. She wanted to try everything and do her best. The interferon resulted in some pretty significant learning disabilities back then. She had a lot of trouble reading and comprehending what she was reading. She could read, but she wasn't taking anything in. There were all these different manipulatives they used to teach her math and like she was great at, you know, addition and multiplication tables, but she couldn't ever
Starting point is 00:32:11 apply any of that. So you've had multiple options at this point, you have gone through some treatments, you have deferred some treatments, what is next on the journey? Because I have to say this is a bit unique in that when most people think of they're getting diagnosed with cancer, right? You get a diagnosis, you have the surgery, or you have the radiation, you do the chemo, and then in 12 to 18 months, it's done, right? One way or the other. Sometimes people get recurrence, but for the most part, you do the treatment, then you're done. This has now been a years long process. Right. And no end in sight, right? Because what they said was you have to just stay on
Starting point is 00:32:53 this interferon for as long as it works. And there's nothing else to offer you except for adding in that Ariceae, which we did. And then she also stopped growing. She had gotten a little bit taller, but she really, like her baby teeth having fallen out, and what the doctor had said was, you have to realize that their little bodies are just fighting to stay alive. And there's nothing extra to grow or knock teeth out of the way
Starting point is 00:33:16 with your permanent teeth and all that stuff. So we eventually put her on growth hormone. So that was, guess what? Another injection. Oh, fun. So at that point, she was getting 73 shots a month. But yeah, so the deal was she was just gonna be on this forever until it stopped working.
Starting point is 00:33:35 And then we were just gonna figure that out. And by the time she was in the fourth grade, she had been on the drugs for years, and we really didn't know how much time we were going to have left with her. Things were starting to head in a less stable direction and we didn't have any options left. By then the internet was becoming a little more prevalent and available to people at home.
Starting point is 00:33:57 What year is this? This would have been in probably 1999. I don't have the exact date, but by then, you know, now she's early internet days. Now she's 10, very early internet days. I didn't have any sort of, I think we just had email back then. I was so confused about what the difference between, you know, email. Was it AOL? It was AOL. Oh, you know it. Yeah, okay. Yeah. I know that dial-up sound. I know it. There was a lot of that. But a friend was very computer savvy and so was her husband. So she turned me on to this parents group that was a list server. So back then, it wasn't
Starting point is 00:34:32 like instant messaging, but it was emails that went back and forth. And I would get a digest at the end of the day. And the thing is called ACOR, the Association of Cancer Online Resources. There are all these different groups for all different types of cancer, and there was one for pediatric cancer patients, any type. I signed up for that one because there was nobody that I could relate to on the CML page because everybody else was old ladies and old men and nobody had a 10-year-old. One day I got the digest and there was this guy who lived in Texas and his kid was treated at MD Anderson and he wrote to me and said, hey, don't you have a child with
Starting point is 00:35:13 CML? Because I talked to somebody today at MD Anderson, a patient who said he's on a phase one trial. So I wrote back to him and said, yes, can you tell me more? And he gave me a little bit more info. So I go to Mary's oncologist and I said, all right, so this is gonna sound crazy, but supposedly there's a drug trial going on in Texas and it's for CML patients
Starting point is 00:35:34 and that they put 30 patients on the trial. And within the first month, they all went into remission from CML. And she said, well, that's impossible. I said, that's what I thought, but I'll look. So she said, well, that's impossible. I said, that's what I thought. But I'll look. So she said she was going to look it up. And so two days later, she calls me back. She said, Karen, I have looked everywhere. I can't find anything about this. Do you have any more information? So I write back to Ricky, Karen's daddy, and he says, okay, let me see what else
Starting point is 00:35:59 I can find out. So two days later, I get another message from him and he says, okay, the doctor's name is Brian Drucker. He's based at OHSU in Portland, Oregon, and this is real. So gave her that information. She reached out to Brian Drucker in Portland. He answered her call. They chatted. He said, Mary sounds like a really good candidate. He said, the only thing is you have to be 18 to be on the trial because that's one of the requirements. So he said, but yeah, all of the people we gave it to, we have no idea how long this remission is going to last, how durable it's going to be, but I can tell you that we're putting
Starting point is 00:36:35 people on this and their blood counts are returning to normal immediately. Well, immediately. Can you imagine being one of these patients who signed up for the study for people who are going to, and I hate, this is the most grim thing I'm going to say ever probably, but who are going to die anyways. And they aren't even signing up for this study in hopes of living. They're literally just like, see, maybe it'll work. Maybe you'll buy me more time. Hopefully the side effects of this medication don't kill me a little faster.
Starting point is 00:37:07 There are people who had already bought their burial plots. That's how bad this is. And then all of a sudden you're in this study and magically you don't have what you... It's crazy. You get into cancer research and you start talking to researchers and doctors and everything and you realize that the FDA will approve a drug that extends people's progression-free survival by two months. So it just buys them two extra months and that's a win. So to think that all these people would go into remission, like complete hematological
Starting point is 00:37:39 remission, blood counts return to normal in a month, is just crazy. So we said, yeah, we would like to talk to you. And he said, well, I tell you what, well, he asked our doctor if she was going to be at the ASH, the Association of American Society of Hematologists, if she was going to be at the ASH conference in New Orleans in a couple of weeks. And she said, yes, I will be there. So they both met at the conference and she talked to Brian Drucker and he said, yeah, I would like for you to send her over and we'll see what we can do about it. She sounds like a perfect candidate except for her age, but let me see what we can do.
Starting point is 00:38:12 So got all the plans made. We went up there and we met. Dr. Drucker agreed to come over to the Children's Hospital in Oregon. So they introduced us to the doctor. They introduced us to another family that was there with the child. So it turns out that there were four kids that were accepted in the trial. And this is there were four centers around the country. The only center that took that took kids was the one in Portland. So the one little family that we met was from Italy and we met him and his parents and
Starting point is 00:38:42 they were so sweet. They didn't speak any English, we didn't speak any Italian, but she put her hand up and she looked at me and reached into her purse and she opened up the pill bottle and she had me hold my hand out and she poured the pills into my hand so I could see them. Because at this point now, I know that there's these pills, there's no more injections, and it's working. And all I wanted to do was just,
Starting point is 00:39:09 I wanted to be able to give it to her. So this mom knew that even though you're not going to get it yet, I bet you would like to see them. So we hugged and cried and everything. What was it like having that like tangible solution? It was just, well, you could see still like I'm, you know, choked up today thinking about what that meant and how she knew that that would be as a mom that that would be really important to me to be able to see the pills. So we sit there in a hotel room for a couple of days and every day it's this or that and finally they tell us you know well the the hurdle is that the protocols for this trial because it's an adult disease are that the patient has to be 18 and older they have to have failed on other forms of,
Starting point is 00:39:45 standard forms of treatment, and they have to be off treatment. So we had taken her off her medications in preparation, so everything else was in place but the age. And because of the age, it wasn't like there was anything magical they could do, they had to get permission from Novartis to make an exception.
Starting point is 00:40:04 And they had made a few exceptions for three other kids at that point. I don't know why it was such a hurdle, but at some point he just said, we're not ready to start now, so we're going to send you home and we're going to keep watching. And I guess in some ways they were probably looking at this frail, frail little person and think, do we dare try something on her? Because ultimately they're testing so few people on this trial and they've got to be careful and they're dealing with the FDA and everything.
Starting point is 00:40:33 So they sent us home and we were discouraged, of course. And then her white gown started coming back up and doing better. And so we were starting to talk about going back and she got shingles. And then we had to postpone everything again while she was hospitalized. And they, you know, had to make sure she was completely through that and back, you know, as healthy as could be after that. And we just kept testing and testing and waiting. And it was excruciating.
Starting point is 00:41:00 But finally they called us back after the shingle episode. We went back to Portland and kind of the same thing started again every day we'd call and they'd say not yet we haven't gotten permission we haven't gotten permission and I know he was working with lots of other patients too like this we weren't their only concern but one of the ladies who was always so great about supporting our family and who we you know knew from church and stuff. She sent an email through the Novartis website, the contact us thing that usually it's just an auto response that you get. But she said, there's a little girl in Portland waiting for this drug, please help. And the next
Starting point is 00:41:38 day I got a call from a lady who was a head of all of the United States drug trials for Novartis. And she was in New Jersey and she asked me to tell her a little bit about what was going on and I did. She said, okay, I'm going to call you back. We sat there by the phone all day and about 5 p.m. she said, okay, go in tomorrow morning and that's when we finally started. What a miraculous thing that when Mrs. V, clicked on that contact us form, not expecting to get like how did it end up in Debra rest his hands.
Starting point is 00:42:10 She was like really a big deal. And that she would just call us the next day and say, okay, I got you. But when it was time, it was time, you know, so she started on the pills once we went through a week of them observing her and making sure she didn't have any issues, they sent us home. And then this is the amazing part. So she was always 100% positive in every single one of her cells for this Philadelphia chromosome, which is the marker for CML. And we did the first bone marrow biopsy. We went back after, I think it was 30 days on treatment. We went back there for a bone marrow biopsy, saw the doctor, got a checkup, came home. It took a while back then even to get test results, but we finally did because this was
Starting point is 00:42:55 again, before the PCR testing was available. So we finally got an answering machine message. It shows you how long ago this was. So come home, you know, you listen to your little answer, you call and get your messages. Her dad had called and gotten the message and he said, hey, the lab called and they said Mary's down to 67%. And I was like, oh my gosh, you're kidding.
Starting point is 00:43:17 So from 100 down to 67%. So I rushed home and I listened to the message. And that's in 30 days, right? About 30 days, yeah. It was her first test I listened to the message. 30 days, right? About 30 days. It was her first test after starting on the drug. So 67% was fantastic. So I called though. I said, I listened to the message.
Starting point is 00:43:34 Carol was the nurse at the trial center. I said, I listened to the message, Carol, and I couldn't tell if you said 67% or 6% to 7%. She said, let me call the lab and put you on hold. I'll be right back. A few minutes later, she comes%?" She said, let me call the lab and let me put you on hold. I'll be right back. A few minutes later, she comes back. She goes, okay, so it turns out it's 6 to 7%, which was like, oh my God.
Starting point is 00:43:53 And then she goes, wait, it gets better. They made a mistake when they calculated the percentage. She said they were so amazed with the results. They usually count 200 cells. So they counted another 100. But when they did the math, they based it on 200 cells. So they counted another 100. But when they did the math, they based it on 200 cells. So she's really down to two or 3%. Oh my goodness. And then the next time we test her, no sign of it at all. So it's just gone? Yeah. Now, back then we didn't know like,
Starting point is 00:44:20 how long is this going to last? Do you take the drug for the rest of your life or do you go off of it at some point? Nobody knew. And so you know just like we had been doing Mary's whole life we just decided we would take it day by day. We had no idea how many days we were gonna get but we knew it was more than before this new drug. So there were times that were discouraging and sad but once you accept that you're gonna lose your child, you don't know when, but everything on top of that was just a bonus. And you know it's funny because my mom died when I was 22 and she was sick for a really long time before that. She had two bouts with breast cancer and it was awful. And I
Starting point is 00:45:02 remember how many people all over the world were praying for my mother. I mean she had every continent there was someone praying for her and you know I just knew she was gonna pull through and she didn't. So when Mary got sick and they told us the prognosis and you know I just said I'm not gonna be one of those parents that does all this crazy stuff to try to you know fight what's the inevitable. I'm not gonna spend all of our days doing that. We're just gonna enjoy the time that we have. And I said in a weird way, I'm not gonna let God disappoint me again. And I could just see God sitting up there going, watch this, you think you got me all figured out.
Starting point is 00:45:40 You've decided you're not getting a miracle. Well, I'm the one who decides who gets miracles. And every day has been a miracle. Well, I'm the one who decides who gets miracles. And every day has been a miracle. There's some things that just aren't explainable any other way. I guess it's time I jump in here. I'm Mary. Oh my goodness. Wow.
Starting point is 00:45:58 I can't believe this. I can't believe you're here. Honestly, I also can't believe I'm here. I'm still going through that. I'll have people tell me, you know, oh my gosh, you're a childhood cancer survivor. You didn't get a childhood. You were robbed of your childhood. I was like, no, my gosh, no, quite the opposite. I mean, they thought I was going to die. I went to Disneyland like Gary. We have heard so much about you and your story from your mom, but could you tell us about what happened after the trial?
Starting point is 00:46:29 Yeah, so after the trial, my mom and my sister walked into the choir practice that I was in until I was cancer free. At that time, it was what was known as cancer free. Now we say undetectable. And from there, I just really started thriving. I finished elementary school, I went on intermediate school, and I started having this more normal life. I went on to high school. And these are all things that my parents never thought
Starting point is 00:46:55 that I would ever get to. And then now I'm driving a car and dating and they didn't think they were gonna have to face any of those problems. Going through college, I was told I wasn't gonna get a diploma and then here I am getting a degree. Now I have a job and I'm dating my wonderful husband who I've been with for 16 years now. And then we, I was, let's see, we were in our little condo when I was hearing all about these treatment free remission trials.
Starting point is 00:47:30 And I'm like, wow. I remember I was actually speaking at one of my mom's events for curate cancer research, telling my story. And I was saying, yeah, there's the new trials that are happening. And was it France, mom? Yeah. They were just European trials at that point. Yeah, it called treatment free remission and I hope that I can
Starting point is 00:47:50 be part of that one day. So that was in November that I did that speech and in January, june 18th here I am talking to Dr. Drucker talking about coming off my my treatment, my life-saving medication, and he says, I think you'd be a great candidate. And I said, all right, let's do it. And so I went off and continued to get monitored monthly, monthly turned into every three months. And my numbers are what we would call detectable.
Starting point is 00:48:23 So undetectable is 0.0000. My last result was 0.032%. So it's there but it's at bay. So I am considered treatment-free. I am not cancer-free and I'm perfectly fine with that. But I've been doing very well off of treatment and then right around, let's see, I think I was about two years off or a year and a half off. My husband and I, we were talking about wanting to have children. We didn't know if the cancer treatment
Starting point is 00:48:59 had made me infertile. We didn't know if I could get pregnant. There was just so many unknowns. And I told my husband, you know, this might be a very long journey of fertility treatments and you know, maybe we'll have to do IVF and that's a whole big financial hurdle to get through and long to hold it. But then three or four months I was pregnant. And literally had a textbook pregnancy and had her baby on the due date. I mean, it was, we were just like, I can't believe all this is happening.
Starting point is 00:49:28 It's so great. And he's a neatest little guy. Funny and happy and he's two and a half. He's doing great. We don't know how long I'm going to be off treatment. Back in December, so almost a year now, I did have a blip in my numbers and I'm like, oh, that was weird. It got to the point where we would consider going back on treatment.
Starting point is 00:49:48 Then we did another test and it went back down to stable. I'm like, okay, so let's, if you want to have another one, let's, let's try. Maybe that was just a little glitch. And so I got pregnant again. I can happily say that I am nine months pregnant and have not had to go back on treatment So I've made it another pregnancy without having to go back on treatment. I hope to get to six years treatment free I'm gonna test again in December of this year and See how things are looking but for now I'm just taking the winds where I can and so happy
Starting point is 00:50:22 I was able to have another pregnancy off the treatment She really is something she has been an inspiration to a lot of people but most of all her parents. Well thanks Maya. I still remember when you got to hold Vincent right after you delivered him and you just put him up against you and you were crying and you said I have always wanted you. That's true. Yep. Yep. Okay, now you got me going. People say that I'm a miracle. My two boys are miracles.
Starting point is 00:50:54 Not only was I not supposed to live, but I have these two incredible sons. And I am just in awe. We actually have one more little surprise for the audience. We have the doctor here that saved Mary, and he's going to be reunited with Mary and Karen for the first time in many years. Dr. Brian Drucker is a physician scientist and the chair of leukemia research at Oregon Health and Science University. Dr. Drucker helped develop GleeVac, the first medication that specifically targets cancer cells.
Starting point is 00:51:26 Gleevec landed on the cover of Time magazine and established Dr. Drucker as a cancer pioneer. Dr. Drucker's work launched the era of precision cancer medicine leading to hundreds of other therapies. I'm honored to welcome now Dr. Brian Drucker to talk with us. Hi, Dr. Druger. Thank you so much for joining us. Thank you. It's so good to be here and it's so good to see you, Mary and Karen. It's good to see you too. Good to see you too. Thanks for everything. 20 years?
Starting point is 00:52:04 Yeah, 20 years. How are the kids doing? One is napping and the other is still cooking. I mean, Dr. Drucker, did you think 30 years ago that you would be helping someone not only survive in incurable cancer but now be able to have their own children? Never in my wildest dreams or imagination could I have thought of that. I think you have no idea how much you've given our family
Starting point is 00:52:35 and Mary's family, but you know, this is a child who we did not think was going to make it to kindergarten. And look, and this is really, you've got a lot of credit for this. I literally owe you my life. Well, how incredible that makes me feel. It's just so good to see you and hear how well you're just amazing. Dr. Drucker, could you talk about, you know, you are a physician scientist, right? And a lot of our experience is with failure. Yes. Right.
Starting point is 00:53:08 Yes, it is. It sure is. What did it feel like to have such a massive success? Well, I'll tell you about a day in clinic. It was about eight months into our clinical trial. This was before we had started the trial in children. And the patients that I was taking care of were people that were told you have three to six months to live,
Starting point is 00:53:34 get your affairs in order. They found our way to the clinical trial. They were all responding. They were feeling great. And I was looking at this and thinking, this is thinking, this is amazing, but what if this doesn't last? What if this is this medication
Starting point is 00:53:52 that temporarily improves their condition, and then three months later, they're right back to where they were before, who's gonna care? But they came to clinic that day, and three patients in a row told me about how their hope for the future had been restored. They were feeling better than they had in years. Their blood counts were normal for the first time in years and they were thinking about the
Starting point is 00:54:17 future again. And they were in tears. I was in tears and and I recognize that if they're embracing this, I need to embrace it too. And those same patients like Mary are still with me 25 years later. And I've seen their weddings, I've seen their children, I've seen them, their kids graduate from college and get married and they are now grandparents or great grandparents. And then we set up the pediatric trial and here we are 25 years later and we're seeing the children of the children that we put in those trials. Just absolutely. I think I'm one of the longest living patients with CMOS. You absolutely are. Yes. It's pretty, pretty, yeah. Can you give us for the medical detectives audience a little 101 on what is CML and how
Starting point is 00:55:16 does Gleevec work? Yeah. So CML is one of the four common types of leukemia, And it's just characterized by an overproduction of white blood cells. And so if you think about a normal white blood count, which should be five to 10,000, people with CML will come in with a white blood count of anywhere from 50,000 to 500,000.
Starting point is 00:55:39 And what happens, what causes this leukemia is that it's almost like there's a light switch or a thermostat in the white blood cells that regulates their growth, it gets stuck on. And it basically, when you have an infection, your body says, make some white cells, go fight the infection and then the switch turns off. Well, in this situation, there's a molecular abnormality
Starting point is 00:56:09 that basically is the light switch getting stuck on and the cells just continue to grow uncontrollably. Research from the 1960s to the 1980s identified what that molecular switch was. Gleevec comes in and basically turns the light switch off. So everything returns to normal. And because it's only present in the leukemia cells, it doesn't have that much, it kills leukemia cells without harming the normal cells. So it's a very highly targeted, very specific therapy that works for this leukemia and works
Starting point is 00:56:45 incredibly well. Wild, wild how small nuanced things in the body can dramatically and completely change everything. Because like the way you're talking about it is like a light switch, right? Like I leave light switches on in my house all the time. Like how does our body even know to turn these things off and on? And this is only one switch. Our body's got thousands upon thousands of them. And so it's wild to me to think that one switch could cause this much damage. But that's what you're telling
Starting point is 00:57:17 me is that's the case. Yeah. Yeah. And you know, what the other story I tell is that when I was in my cancer training The the general view was what we needed were higher doses of chemotherapy more chemotherapy more drugs higher doses and the analogy I use it's sort of like if they stuck you in a room with a light bulb that was stuck on and A bat to go knock the light out and you couldn't reach the light you'd say give me a bigger bat. When they stuck me in the room I said well why is the light switch stuck on and they said oh you're
Starting point is 00:57:53 one of those guys let's send her the lab and let him figure it out we'll probably never hear from him. But you did! I did! Yes. Dr. Dr. Druger, what makes you curious now? There's so many things, and there's still a highly lethal leukemia called acute myeloid leukemia where only 20%, 30% of people are cured. And I'm incredibly curious about how we can attack that leukemia. But with Mary's leukemia, she's an elite she's a, you know, elite minority, about 10, 15% of people who can stop therapy. Most of my patients have very, very well controlled leukemia, but can't stop. So they're taking their medication every day. And unfortunately,
Starting point is 00:58:41 because they've been told, Hey, you've got a good leukemia, you just have to take a pill every day, all the side effects they have are something new and different and they wanna get off treatment. So we're trying to figure out why can't we get more people to this undetectable state where we can stop therapy? And I'm incredibly curious about how do we improve the outcome even for our patients who are living in essentially a normal lifespan? But maybe not as healthy as they could be or should be
Starting point is 00:59:12 you know, I'm part of a support group for people with CML on Facebook and you know there's a lot of people who just don't have a lot of hope because they're just not familiar with the outcome of what CML is today. Yeah, and I will tell them, if you have to be diagnosed with CML, now is a great time. There are so many treatment options, like not just Gleevec, but there's second generation, they're called TKIs that are available to the patient. So if you have side effects on one TKI, you can move on to the next.
Starting point is 00:59:48 And when I was diagnosed with a death sentence and now it's like, okay, here's a treatment, let's see if this works. That didn't work, let's move on to this one. There's so many options and Dr. Gricker started it all. And Mary just did a spectacular job of telling you the generational difference about how people think about treatment. It's not age, it's when you are diagnosed. When you were diagnosed in Mary's
Starting point is 01:00:14 era, you were told you have three to five years to live, this is a death sentence. Now people are told when they come into my clinic, we think you're gonna live a normal lifespan, but you're gonna have to take this medication. And so Mary's generation, I had a really hard time convincing them to stop therapy because the medicine they got is saving their lives. Now people are taking this medication that's making them miserable. And then, you know, they didn't,
Starting point is 01:00:44 if somebody told you you got three to five years to live unless you take this medication that's making them miserable. And then, you know, if they didn't, if somebody told you you got three to five years to live unless you take this medication, that's a very different approach. So the people now that get started on treatment, any side effects, any toxicities, is when can I get off this medicine? And so we have to work with, we're spending a lot of time working on modifying doses,
Starting point is 01:01:04 trying to make the treatments more tolerable, thinking through those. And again, that's OK. But it's a very different conversation than the conversation of what Mary had to face. Think it, you know, it reinforces the idea that the most powerful drug is hope. Yeah. Yeah. Yeah. You know, and as long as you can keep that spark alive. And you know, what I was going to ask you, Dr. Drucker, is advice for listeners who either still are not diagnosed or they don't have a treatment plan yet and they are waiting to be rescued by their own Dr. Drucker. What do you say to
Starting point is 01:01:47 those people? Well, I think, Dr. Nance, you've hit on two important issues here. First is the day I described in clinic is I learned that there is no greater gift than hope. And people need to continue to have hope. But I've also learned, and one of my favorite Martin Luther King Jr. quotes, is faith is taking the first step, even when you don't know where the staircase leads. And so faith and hope.
Starting point is 01:02:22 And Anna, when you've talked about, you know, thinking about Mary taking that first step and Karen taking that first step on an unknown doctor with an unknown clinical trial and look where the staircase led. So it's just a remarkable story and just people need to remember that, yes, there are people out there that are trying to make this world a better place for all of us. And having that hope and having that faith can get you through. And I also think we need to do as good a job as we can and hopefully we'll well with this podcast to elevate doctors who are taking those steps because they are what leads to changes like this.
Starting point is 01:03:07 And I think it's hard. I'm not a medical professional, so I don't know, but I assume it's really hard to constantly advocate for these new solutions and constantly keep trying when things may not work. And again, we only see your success in this story. We don't see all the times you failed to get to this point. So thank you for continuing when I'm sure you failed a lot in the beginning. Took a lot of perseverance.
Starting point is 01:03:30 Well, I think as I told you, I was told that what I was working on would never be possible. And even when I was coming up through the ranks, I was told that this was never going to work. And I had to leave Boston, my job I had in Boston, to come out to Oregon to work on this project. And it all worked out. It was some tough times. And a lot of people who really thought this was not a good use of taxpayer dollars with funding
Starting point is 01:04:00 and, again, lots and lots of failures and doubters but you know sometimes that just forces you to decide do you believe in yourself are you going to move this forward and ultimately my view was this deserved to try on in people and if it didn't work in people fine but at least it needs to be given a shot. And fortunately it was. My heart just swells when I think about the number of lives that you've saved and changed. And then just the number of life years, quality life years, if you add it all up together,
Starting point is 01:04:36 it's just, I mean, I'm sure you think about it not as often as I think about it, you know, but really, I mean, I can't think of another person in the world who's made the kind of difference that you have. And you've done it in such a beautiful way. And I still remember when I first met you and did a little reading about you and heard that what really motivated you was your patience. And you wanted to offer them something more than saying you've got three to five years and then things are going to go sideways. And there's nothing else you can do. What I've been grateful for is that during my toughest times it was my patients who always
Starting point is 01:05:08 had faith in me and I had to be their voice and their champion and what I get in return now is every once in a while I get to meet a patient like Mary 25 years later and get an update on what's happened or out of the blue I'll get an email with a thank you of somebody telling me what they've done with their time. And it's just so remarkable to get that gift back and to hear what an impact you've had. You know, as a doctor, what I've talked to my med school classmates is we all went into this profession to help people. And whether we are a surgeon who takes out somebody's appendix who burst and saves their lives
Starting point is 01:05:51 or in an emergency room to help somebody or a primary care doctor who's giving somebody a vaccine that's going to prevent them from getting a life threatening illness. We're helping people. And that's that's the beauty of this profession is that we're here to help. And yes, I feel so fortunate that I get to hear all these stories and feel like I've made an impact. But it's just, I just feel fortunate about that. I'm just sitting here about to bawl my eyes out because all I can think about is what if you had listened to the people that didn't believe in you? I mean if you have taken nothing from this related medically at
Starting point is 01:06:35 all, I think this is a tremendous example of what can be accomplished when you actually believe in yourself, regardless of what the world says around you, because all of this amazing thing, Mary would not be here. And either with many other people, if you hadn't persistently fought for what you thought was right. And I think that that is commendable and beautiful. Like I think it's just it's just a really beautiful thing. And I think it's inspiring to me to think, what are the things that I'm sometimes afraid to fight for?
Starting point is 01:07:07 And what am I giving up because I'm afraid of what people will say? Just on a very raw level, whose life am I not going to impact in a positive way? Because I let these things get to me. And as someone who is in a bigger body on the internet, that's a very things get to me. And as someone who is in a bigger body on the internet, that's a very helpful message to me. And I thank you because I think it just changed my perspective on all of that.
Starting point is 01:07:36 It's really easy to focus on the negative, but I think you knew that you could do something and so you did. And I think that's just great. Just great. You're wonderful. You're the best. Your point is exactly right is that we all are going to face difficulties in our lives. We're always going to face people who are going to doubt either our abilities and what you said is exactly right. Are you going to listen to that? Are you going to listen to yourself and decide what you can do and what you're good at and what you want to accomplish and where you can make an impact?
Starting point is 01:08:10 So yes, everybody's going to have some doubters and detractors at some time during their life. And I remember my wife, who's a writer, wrote this amazing commencement speech that I once gave. wrote this amazing commencement speech that I once gave. And she instructed me, walk up to the microphone, do not say anything and start immediately with these three sentences. You will never be successful. You should never pursue a career in science. You have no future here.
Starting point is 01:08:43 And by the third time, people were nervously laughing because they were like, what's this guy doing? And I said, those are some of the words of encouragement I've received during my career. And the point was, what do you do with that? What do you make of that? How do you recover from that? Because do you make of that? How do you recover from that? Because it's not about what people tell you.
Starting point is 01:09:08 It's about what you do and what you do with those and how you move forward. Because everybody will hear something like that sometime during their life. And I just wanted people to understand I wasn't immune. I wasn't immune. I heard plenty of that during my career. Here's a story that you probably don't remember, but that made a huge impact on me. While we were there during the trial for those couple of months that we stayed in Portland, we celebrated Mary's birthday and we decided, you know, instant patients will have a party at the hospital. And you left the clinic and came over to the birthday
Starting point is 01:09:45 party at the children's hospital and stayed for a little while. And you know, this is not every kid gets to have a future Nobel prize nominee and somebody who saved dozens and dozens and dozens and dozens of lives take the time to leave the clinic for probably the most exciting time in his entire career and come over to spend a few minutes with you on your birthday. And that's the kind of human being that this is, you know, that's the kind of man that we've had the privilege of knowing. And to me, that's the most remarkable thing about you. Well, I really thank you. But I have now having, now having children, I know that there's nothing more important than their birthdays.
Starting point is 01:10:23 having children, I know that there's nothing more important than their birthdays and those celebrations. Yes. Yes. And it was really special to have you come by for a little while. So thank you for taking the time to do that. Well, I'm, I'm. You know what, we have a Facebook page called
Starting point is 01:10:36 Brian Diggers. Yes, he probably knows about that. There is a Facebook group, and that's what's called Brian Diggers the Man. I mean, I was already gonna join that Facebook group. Trust me, it's a big deal. What he did is a big deal. Now I might become an admin.
Starting point is 01:10:48 You don't know. You're going to have to fight Pat for that. Thanks for saving my life. Just casual. Well, thanks for everything you're doing, Mary. I'm wishing you all the best with number two. And as you know, you have to send pictures. No, I will.
Starting point is 01:11:09 I will. And you got my wedding photo and then I'm my firstborn and then the second born will be here soon. Yes. Yep. All right. Thank you. Thank you for everything.
Starting point is 01:11:18 I want to thank Mary and Karen for coming on and sharing their story. I love a good mother-daughter relationship story. And of course, thank you to Dr. Drucker. Thank you for all that you have done to advance medicine in the past 30 plus years. I don't think you will ever truly know the impact that you have had on people's lives. Thank you so much. All right. Great to talk to you. Bye. The Medical Detectives is a Soft Skills Media production produced by Molly Biscar. Sound designed by Shane Drouse. If you have a medical story you'd like to see featured on The Medical Detectives, please email it to stories at TheMedicalDetectivesPodcast.com.

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