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- [00:09]
Erin
Erin, it is so good to see you again. I've decided I'm gonna call you Erin now because I feel like we've been doing this enough now that you're more than Dr. Nance to me.
- [00:20]
Dr. Nance
I would love it if you called me Erin. And, you know, I'm just so thrilled to be back for another week of the most incredible medical stories.
- [00:30]
Erin
I am so excited about this week's episode. It's a wild ride.
- [00:33]
Karen
This is really a special moment for.
- [00:35]
Dr. Nance
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 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.
- [00:55]
Karen
So it was just absolutely like, I.
- [00:58]
Dr. Nance
Am fangirling in my own episode, which is incredible.
- [01:01]
Erin
I love a good fangirl moment.
- [01:04]
Dr. Nance
In addition to interviewing this just absolutely amazing doctor, we will be interviewing a parent, and from a parent's perspective, fighting.
- [01:13]
Karen
For a cure for your child.
- [01:17]
Dr. Nance
I think it's an incredible story of.
- [01:20]
Karen
Hope and resilience and never giving up the fight.
- [01:25]
Erin
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 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 were meant to do something great.
- [02:01]
Dr. Nance
Yeah. So can't wait to get into it.
- [02:03]
Erin
Yes. Let's go.
- [02:08]
Karen
Hi, Karen. Thank you so much for joining us, the medical detectives today.
- [02:12]
Mary
Thanks very much for having me. I'm excited to share this today.
- [02:15]
Karen
I always start the podcast by asking our guests, what is your intention in sharing your story?
- [02:23]
Mary
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. And also to encourage people that sometimes in the worst situations, the best things happen, and sometimes you gotta 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.
- [02:49]
Erin
Now I'm really excited.
- [02:51]
Karen
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, can you talk about that excitement you had?
- [03:04]
Mary
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. And she was born a nice, big, healthy baby at over eight pounds and just healthy as could be. You know, just everything was great. She was doing well. She was a good little nurser. She loved her siblings. She met all of her milestones in the early days, so everything looked pretty good.
- [03:41]
Karen
And you're a seasoned mom at this point, right?
- [03:44]
Dr. Nance
When did you first start to notice.
- [03:46]
Karen
That something about Mary was just different from your experience with your other kids?
- [03:53]
Mary
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 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, might be, but just, you know, it always got not dismissed in an ugly way, but just you got that feeling that the pediatrician was like, 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 that 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 wouldn't go away. And we just kept trying to get her to eat.
- [05:09]
Erin
How old was she at this time?
- [05:10]
Mary
That was between 18 months and say two and a half. And when you looked back at her weight and everything that, you know, as we would track, as she was growing, it was at about 18 months that the trajectory just fell off.
- [05:24]
Karen
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?
- [05:43]
Mary
Well, I. 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. 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. Always saw the worst in every scenario. It was my job to say, oh, I'm sure it's gonna be fine. 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 Disney 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. She just wasn't eating and she wasn't growing and she was getting a lot of little fevers.
- [06:39]
Karen
So you kind of continue this pattern of low lying type symptoms. But what was it that really rang the alarm?
- [06:50]
Mary
So it was around Christmas time, it was mid December, and she was about 2 1/3 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 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 8:39pm so regular old doctor's offices were closed. 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 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 because he was on duty that morning. And he said, yeah, you know, it could be a blockage, could be poop. 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, you know, he goes, just go right now and. And he said, there's an oncologist that's going to meet you there. And even then, in my mind, you know what I was thinking? Oncologists are probably. They probably just, like, take care of all the growths. Like if there's something wrong when it's not supposed to be, they 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 the show on the road and figure out what's going on. 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. And 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 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 liver. 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 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. 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's going to stop 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 cell counts.
- [11:08]
Erin
I appre.
- [11:09]
Mary
Yeah, yeah. So for the rest of us, a normal white blood cell count is between 5 and 10,000. And if you get, like, 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 wasn't 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 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 an enlarged 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 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 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.
- [13:15]
Erin
Wow. I feel like anything I'm going to ask is 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.
- [13:43]
Mary
Well, you know, I think one thing I heard over and over from people is 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 in. And it was like, literally there was something for us to be doing every minute, whether it was, you know, 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. 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. 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 don't get in a hospital. So they sent us home after the 16 days or whatever it was in the hospital, they sent us home with the 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 vial full of powder, swirl it around, draw it up in another syringe, get her ready, do the injection. 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 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 were like, okay, that's it, 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.
- [16:45]
Erin
So my Heart is breaking.
- [16:47]
Mary
It's been a long, long time and it still breaks my heart that she felt badly. So we didn't cry anymore with her.
- [16:53]
Dr. Drucker
So we just kept giving her the shots. And we knew someday the drugs would stop working. But there was one other option.
- [16:58]
Mary
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. No, none of us in the family were a close enough match. So then we went to the next step, which is to look for a match 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 out, oh yeah, not quite a match. So then we'd go to the next person. But we did find someone who was a 5 of 6 antigen match. And in my mind again, positive Patty over here is 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 transplants. 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 and a few other factors, that her chances of surviving the bone marrow transplant were between 5 and 10%. And he said one of two things is going to happen, you know, but he said the big thing that we worry about is the graft versus host disease. So 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 right? This is foreign and it'll attack that 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 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 going to happen. I've seen people that are great matches who have horrible graft versus host disease and vice versa. 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 graft versus host disease. It's dreadful. But he said, I 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 days to give it some more thought? And he said, yeah, yeah. So ultimately, that was the decision 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.
- [20:26]
Erin
How old was she when this.
- [20:28]
Mary
So that was still early. That was probably when she was four.
- [20:32]
Erin
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. Is that correct?
- [20:39]
Mary
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.
- [20:45]
Erin
Gotcha.
- [20:46]
Mary
And we.
- [20:46]
Erin
How long did it take to find a donor?
- [20:48]
Mary
Oh, 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.
- [21:07]
Erin
What a heartbreaking decision to have to make. Like knowing that you're going to lose your child.
- [21:11]
Mary
You're going to be in public school or private school. Should I cut their hair short or leave it long? You know? And 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 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. I'm like, I know, but it's also killer. He goes, I know, but this is it. And you just don't think you're ever going to 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, you know, we didn't get options on the other stuff. It's like, we're taking your baby and we're hooking her up to an IV and we're doing this and we're doing that. But this time it was like, we need to talk to you about this. So we knew that they weren't.
- [21:54]
Karen
That's the duty of a doctor, is to talk about the risks and benefits. 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.
- [22:11]
Mary
Yeah. Which is. I feel like we were totally ill equipped for that. But we did, and it went. Once we made up our minds, it was the right decision. We're 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 going to do all the things she loves doing her best to make sure that the kids all had great memories together. And she would have little things that would go wrong sometimes. 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 like that would hasten her death, if anything. So we decided to accept that this is ultimately what's going to happen, but we're not going to do anything to speed it up.
- [23:11]
Dr. Drucker
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 going to be just filled with joy. And actually, one of the things we did to make sure that that could happen was going to summer camp.
- [23:28]
Mary
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, it's not that kind of camping. Yeah, yeah, I like to camp in hotels. But she goes, no, no, no. 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, 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 entire operation, all the counselors, all the. 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. 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. They're not with their brother or their sister. Where our camp includes, 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. 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, where a lot of people don't want to see you having a good time because you're supposed to. You 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 arm 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.
- [27:03]
Dr. Drucker
So that was an amazing bright spot in this whole journey. And unfortunately, there were more hard moments as well. And around the time Mary was about.
- [27:12]
Mary
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 going to keep things in check. And it did, you know, it kept things under control, which was a miracle in itself because, you know, basically we lost out in the three to five years of chronic phase. She was already advanced into this accelerated phase.
- [27:33]
Dr. Nance
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. 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.
- [28:14]
Mary
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?
- [28:26]
Erin
Yeah, yeah, yeah.
- [28:27]
Mary
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, 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 aware 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. It turned out our oncologist had already run, but she just wanted to be sure. You know, he said, look, I have tons of patients with Ms. 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, she will repeat the same thing a thousand times until we get it, what she's saying. So she's super tenacious, but, you know, we 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 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 who 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, went home and made the phone call. So we agreed to cut the dose in half, which we did 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 at that point. This is what I consider 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 Arises, a low dose cider. I don't know how to pronounce it. I always said cider Rabin or Cideraben, but they called it Aracea. And it wasn't even really a next most promising treatment. 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 hospitalization. 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. And she would, when she got tired, she'd 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, you know, 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 kiss. Mary 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. So she had a lot of trouble, like reading and comprehending what she was reading. She could read, but she wasn't taking anything in. And she could, you know, there were all these different manipulatives. They use it to teach her math and like, she was great at, you know, addition and multiplication tables, but she couldn't ever apply any of that.
- [32:13]
Karen
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, you know, 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.
- [32:49]
Mary
Process and no end in sight. Right? Because what they said you have to do, just stay on this interferon for as long as it works and there's nothing else to offer you except for adding in that arse, which we did. And then she also stopped growing. You know, she had gotten a little bit taller, but she really like her baby teeth hadn't 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 with your permanent teeth and all that stuff. So we eventually put her on growth hormone. So that was, guess what, another injection.
- [33:26]
Erin
Oh, fun.
- [33:27]
Mary
So at that point she was getting 73 shots a month. But yeah, so the deal was she was just going to be on this forever until it stopped working and then we were just going to figure that out.
- [33:38]
Dr. Drucker
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. You know, things were starting to head in a less stable direction and we didn't have any options left.
- [33:52]
Mary
So by then the Internet was becoming a little more prevalent and available to people at home.
- [33:58]
Erin
So what year is this?
- [33:59]
Mary
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, I was so confused about what the difference between, you know, was it aol? It was, you know. Yep.
- [34:19]
Erin
Okay, I know that dial up.
- [34:22]
Mary
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 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 there were all the thing is called acor, the association of Cancer Online resources. And there were all these different groups for all different types of cancer. And there was one for pediatric cancer patients, any type. So 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. So 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 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 going to sound crazy, but supposedly there's a drug trial going on in Texas and it's for CML patients 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 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 Garrett's daddy and he says, okay, let me see what else 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 people on this and their blood counts are returning to normal immediately. Well, immediately cancer.
- [36:43]
Erin
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 if we.
- [37:00]
Mary
Can help somebody else. Maybe it'll work. Maybe it'll buy me more time.
- [37:03]
Erin
Hopefully the side effects of this medication don't kill me a little faster. Right?
- [37:07]
Mary
Like that's people who had already bought their burial plots. That's how bad this.
- [37:12]
Erin
And then all of a sudden you're in this study and magically you don't.
- [37:17]
Mary
It's unheard of. It's just 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.
- [37:34]
Erin
Yeah.
- [37:35]
Mary
So to think that all these people would go into remission, like complete hematological remission, blood counts return to normal in a month is just crazy. So we, we said, yeah, we would like to talk to you. And she, 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 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. She sounds like a perfect candidate except for her age, but let me see what we can do. So got all the plans made, we went up there and we met Dr. Druker 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 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, you know, all I wanted to do was just. 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.
- [39:13]
Erin
What was it like having that, like, tangible solution?
- [39:16]
Mary
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. 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 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. 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 it. 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, you know, 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. So they said to something, and we were discouraged, of course, and then her white count 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. 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 knew from church and stuff. She sent an email through the Novartis website, the contact us thing, that usually it's just a auto response that you get, but she said, there's a little girl in Portland waiting for this drug. Please help. And the next 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. And she said, okay, I'm gonna call you back. So we sat there by the phone all day, and about 5pm she said, okay, go in tomorrow morning. And that's when we finally started. But what a miraculous thing that, you know, that when Mrs. Vicki, Ms. Vicki, you know, clicked on that contact us form, not expecting to get, like, how did it end up Endeavor Rest his hands. She was like, really a big deal. And. 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 again before the PCR testing was available. So we finally got an answering machine message. Shows you how long ago this was. So come home. You know, you listen to your little answer. You call in and get your messages. Her dad had called and gotten the message, and he said, hey. They just. The. The lab called and they said, Mary's down to 67%. And I was like, oh, my gosh, you're kidding. So from 100 down to 67%. So I rushed home and I listened to the messages.
- [43:23]
Erin
30 days, right?
- [43:24]
Mary
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. 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 back. She goes, okay, so it turns out it's 6 to 7%, which was like, oh, my God. 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 hundred, but when they did the math, they based it on 200 cells. So she's really down to 2 or 3%.
- [44:10]
Erin
Oh, my goodness.
- [44:11]
Mary
And then the next time we test her, no sign of it at all.
- [44:15]
Erin
So it's just gone?
- [44:17]
Mary
Yeah.
- [44:17]
Now, back then, we didn't know, like, 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.
- [44:27]
Dr. Drucker
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 going to get, but we knew it was more than before this new drug.
- [44:37]
Mary
So there were times that were discouraging and sad, but once you accept that you've. You're going to 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 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 going to 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 going to 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? You've decided you're not getting a miracle? Well, I'm the one who decides who gets miracles, so. And every day has been a miracle. You know, there's. There's some things that just aren't explainable any other way.
- [45:52]
I guess it's time I jump in here. I'm Mary.
- [45:56]
Erin
Oh, my goodness. Wow. I can't believe this. I can't believe you're here, honestly.
- [46:02]
Mary
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 gonna die. I went to Disneyland like every week.
- [46:22]
Dr. Nance
We have heard so much about you.
- [46:24]
Mary
And your story from your mom, but.
- [46:26]
Erin
Could you tell us about what happened after the trial?
- [46:29]
Mary
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 to 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 that I would ever get to. And then now I'm driving a car and dating and they didn't think they were going to have to face any of those problems. Going through college, I was told I wasn't going to get a diploma. And then here I am getting a degree. Now I have a job and I'm dating my, 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. 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 these new trials that are happening and. Was it France, mom?
- [47:44]
They were just European trials at that point.
- [47:47]
Erin
Yeah.
- [47:47]
Mary
Called treatment free remission. And I hope that I can be part of that one day. So that was in November that I did that speech. And in January, January 18th, here I am talking to Dr. Druker 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 I'm. My numbers are what we would call detectable. So undetectable is 0.0000. My last result was 0.032%. So it's there, but it's. 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. You know, my husband and I, we were talking about wanting to have children. We didn't know if the cancer treatment 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 lo and behold, within three or four months, I was pregnant and literally.
- [49:21]
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. It's so great. And he's the neatest little guy, funny.
- [49:32]
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 we're like, oh, that was weird. It got to the point where we would consider going back on treatment. 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 going to test again in December of this year and see how things are looking. But. But for now, I'm just taking the wins where I can. And so happy I was able to have another pregnancy off of treatment.
- [50:26]
She really is something. She has been an inspiration to a lot of people, but most of all, her parents.
- [50:32]
Well, thanks, Ma.
- [50:34]
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.
- [50:46]
Yep, Yep. The guy gonna get me going. People say that I'm a miracle. My two boys are miracles. Not only was I not supposed to live, but I have these two incredible sons, and I am just in Awe.
- [51:02]
Erin
We actually have one more little surprise for the audience. We have the doctor here that saved Mary, and he's gonna be reunited with Mary and Karen for the first time in many years.
- [51:13]
Dr. Nance
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. Gleevac landed on the COVID 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.
- [51:51]
Karen
Hi, Dr. Drucker. Thank you so much for joining us.
- [51:54]
Dr. Drucker
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.
- [52:00]
Mary
Good to see you too. Thanks for everything.
- [52:04]
20 years.
- [52:05]
Dr. Drucker
Yeah, 20 years. How are the kids doing?
- [52:08]
Mary
Well, one is napping and the other is still cooking.
- [52:12]
Karen
I mean, Dr. Drucker, did you think 30 years ago that you would be helping someone not only survive an incurable cancer, but now be able to have their own children?
- [52:29]
Dr. Drucker
Never in my wildest dreams or imagination could I have thought of that.
- [52:33]
Mary
I think you have no idea how much you've given our family 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.
- [52:46]
I literally owe you my life.
- [52:48]
Dr. Drucker
Well, how incredible that makes me feel. And it's just so good to see you and hear how well, just amazing.
- [52:55]
Karen
Dr. Drucker, could you talk about, you know, you are a physician scientist, right? And a lot of our experience is with failure.
- [53:07]
Dr. Drucker
Yes, right. Yes, it is. It sure is.
- [53:10]
Karen
What did it feel like to have such a massive success?
- [53:17]
Dr. Drucker
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, 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 amazing. But what if this doesn't last? What if this is this medication that temporarily improves their condition and then three months later, they're right back to where they were before? Who's going to 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 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 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.
- [54:59]
Mary
I think I'm one of the longest living patients with cml.
- [55:03]
Dr. Drucker
You absolutely are. Yes.
- [55:04]
Mary
It's pretty. Pretty. Yeah.
- [55:07]
Dr. Drucker
Yeah. And what's.
- [55:07]
Karen
Can you give us for the. For the medical audience, a little 101 on what is CML and how does Gleevec work?
- [55:18]
Dr. Drucker
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 5 to 10,000, people with CML will come in with a white blood count of anywhere from 50,000 to 500,000. 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, you know, 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 that it 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 incredibly well.
- [56:47]
Erin
Wild. Wild how? Small nuanced things in the body can dramatically and completely change everything. Because, like, the way you're talking about 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. Got thousands upon thousands of them.
- [57:10]
Dr. Drucker
Yeah.
- [57:10]
Erin
And so it's. It's wild to me to think that one switch could cause this much damage. But that's what you're telling me is that's the case?
- [57:19]
Dr. Drucker
Yeah. Yes. And you know what? What this other story tell is that when I was in my on 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 one of those guys. Let's send her the lab and let them figure it out. We'll probably never hear from them.
- [57:59]
Mary
But you did. You did it.
- [58:02]
Dr. Drucker
Yes.
- [58:03]
Karen
Dr. Drewer, what makes you curious now?
- [58:06]
Dr. Drucker
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 in an 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, 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 want to 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.
- [59:13]
Mary
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. 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. 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. And, you know, when I was diagnosed, it was 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, you know, Dr. Drucker started it all.
- [60:00]
Dr. Drucker
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 were diagnosed. When you were diagnosed in Mary's 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 going to live a normal lifespan, but you're going to have to take this medication. And so Mary's generation, I had a really hard time convincing him to stop therapy because the medicine they got is saving their lives. Now people are taking this medication that's making them miserable. And if somebody told them, 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, trying to make the treatments more tolerable, thinking through those. And again, that's okay. But it's a very different conversation than the conversation of what Mary had to face.
- [61:15]
Karen
Think it, you know, it reinforces the idea that the most powerful drug is hope.
- [61:21]
Dr. Drucker
Yeah, yeah, yeah.
- [61:24]
Karen
You know, and as long. As long as you can keep that spark alive. And you know what? I was going to ask you Dr. Drucker's, you know, 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 those people?
- [61:49]
Dr. Drucker
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. 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.
- [62:54]
Erin
And I also think we need to do as good a job as we can, and hopefully we will with this podcast to elevate doctors who are taking those steps, because they are what leads to changes like this. And I. I think it's hard. You know, 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.
- [63:20]
Dr. Drucker
Yeah.
- [63:20]
Erin
And we, again, we only see your success in the 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.
- [63:28]
Mary
Beginning, took a lot of perseverance.
- [63:30]
Dr. Drucker
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 institution, the 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, and again, lots and lots of failures and doubters. But 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 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.
- [64:26]
Mary
I just. 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, add it all up together. It's just. I mean, I. I'm sure you think about it. Not as often as I think about it, you know, but really, I. 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.
- [65:04]
Dr. Drucker
What I've been grateful for is that during my toughest times, it was my patients who always 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 get an email with a thank you 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 have. 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 bursts and saves their lives, 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 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.
- [66:22]
Erin
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 take nothing from this related medically at 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 neither would 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 and what am I giving up because I'm afraid of what people will say just on a very raw level, who, 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 helpful message to me. And I, I thank you because I think it, it just changed my perspective on all of that. 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, great, great. You're wonderful. You're the best.
- [67:47]
Dr. Drucker
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? 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, 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. 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 encouragements 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 it's not about what people tell you. 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.
- [69:28]
Mary
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 the party at the hospital. And you left the clinic and came over to the birthday 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.
- [70:15]
Dr. Drucker
Well, I really. Well, thank you. But now, having children, I know that there's nothing more important than their birthdays. No celebrations.
- [70:28]
Mary
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.
- [70:33]
Dr. Drucker
Well, I'm.
- [70:34]
Mary
You know that you have a Facebook page called Brian?
- [70:37]
Probably knows about that. There is a Facebook group and that's what it's called, Brian.
- [70:41]
Erin
I mean, I was already gonna join that Facebook.
- [70:44]
Mary
Trust me, it's a big deal. What he did is a big deal.
- [70:47]
Erin
Now I might become an admin. You don't know.
- [70:51]
Mary
You're gonna have to fight Pat for that.
- [70:54]
Thanks for saving my life.
- [70:57]
Erin
Just casual.
- [71:01]
Dr. Drucker
Well, and 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.
- [71:08]
Mary
No, I will, I will. And you got my wedding photo and then of my firstborn. And then the second board will be here soon.
- [71:13]
Dr. Drucker
Yes.
- [71:14]
Mary
Yep.
- [71:15]
Dr. Drucker
All right.
- [71:16]
Mary
Thank you.
- [71:16]
Thank you for everything.
- [71:18]
Dr. Nance
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.
- [71:33]
Karen
I don't think you will ever truly.
- [71:35]
Dr. Nance
Know the impact that you have had on people's lives.
- [71:39]
Dr. Drucker
Thank you so much. All right, great to talk to you.
- [71:42]
Mary
Bye.
- [71:53]
Erin
The Medical Detectives is a soft skills media production produced by Molly Biscar. Sound designed by Shane Drause. If you have a medical story you'd like to see featured on the Medical Detectives, please email it to Stories themedical Detectives podcast dot com.