Longest Living Transplant Survivor: Nancy' and Barb Lowry.s Story (video)

Summary:  Nancy Lowry, the longest-living bone marrow transplant survivor in the world, and her twin sister and bone marrow donor, Barb, discuss their history-making transplant in August 1960.

Diagnosis: Aplastic Anemia

Transplant: 1960

Longest living bone marrow transplant survivor, and her twin sister bone marrow donor.

(00:24) Nancy Lowry: My name is Nancy Lowry, and in August of 1960, I had a bone marrow transplant from my twin sister, Barb. It went from being experimental to becoming the very first successful bone marrow transplant ever performed.

(00:40) Moderator: Nancy Lowry and her identical twin sister, Barbara, grew up with their parents and their older brother, George, in Tacoma, Washington. When Nancy was six, she developed a blood disorder called aplastic anemia, a condition in which the bone marrow stops producing healthy blood cells. In 1960, there were no treatments for aplastic anemia. Nancy remembers aplastic anemia as a dramatic and terrifying event.

Early symptoms: “He came in and he looked at all the bruises on my arms and my legs, and he picked me up and carried me across the street to the hospital.”

(01:06) Nancy Lowry: I remember I was bleeding from the gums, so my mom was feeding me ice chips from a bowl, and I was lying on my brother's bed. Then, I remember, she scooped me up and took me to the pediatrician's office. I was sitting on the exam room table and he came in and he looked at all the bruises on my arms and my legs, and he picked me up and carried me across the street to the hospital.

(01:32) That was at Mary Bridge Children's Hospital in Tacoma. Basically what I remember about Mary Bridge is lying in a dark room and people coming in and poking me all the time. I don't know whether the blinds were closed, but most of the time I just remember being in a dark room.

(01:50) About three weeks later, I was transferred to University Hospital in Seattle in the back seat of my aunt's car. She put a mattress in her car. She was one of these take-charge people. I remember lying on the mattress in her car, and she let me wear her pink pajamas. She had these pink baby doll pajamas that I just adored, and so she let me wear those.

A Devastating Prognosis: “The doctors told her parents she had only one week to live.”

(02:21) Moderator: Nancy's condition deteriorated rapidly in Seattle. The doctors told her parents she had only one week to live, but then there came a ray of hope. Dr. E. Donnall Thomas, who had been experimenting with bone marrow transplantation in New York, and would later go on to win the Nobel Prize for his pioneering work in the field, was invited to Seattle to discuss the results of his work thus far. The young doctor who was caring for Nancy, named Moreno Robins, attended the talk.

(02:50) Dr. Thomas expressed frustration that bone marrow transplantation had not yet cured anyone. After the talk, Dr. Robins rushed up to the podium and told Dr. Thomas that he had the perfect patient, a child with aplastic anemia who had an identical twin. Dr. Thomas agreed she was a good candidate for a transplant.

(03:10) Nancy Lowry: I really only understood this story about three years ago. I thought what happened was that somebody at the hospital called Dr. Thomas, who was the pioneer in transplants, and asked him to come out and help with my transplant, and he got on a plane and he came out. That's what I always thought.

(03:32) Well, that's not really what happened. There was a doctor in Seattle named Dr. Finch who was a hematologist. He had worked with Dr. Thomas in Boston and then came out to work at the University Hospital in Seattle. In the summer of 1960, he invited Dr. Thomas to come out and talk about leukemia, transplants, and the problems with graft-versus-host disease (GVHD). He didn't come with a plan to do my transplant; that was totally serendipitous.

(04:03) After his talk, the pediatric resident who was taking care of me walked up to him at the podium and said, "We have this little girl upstairs who has aplastic anemia, and she has a twin, and would you help us?" And then I got a transplant that week.

Nancy's twin sister, Barb, was the key to getting the transplant.  

(04:21) Moderator: Nancy's twin sister, Barb, was the key to getting the transplant. Since she was an identical twin, there was little risk that Nancy's body would reject Barb's bone marrow or that a serious complication called graft-versus-host disease would develop. The doctors asked six-year-old Barb if she would donate her bone marrow. At first, she said, "No, thank you," thinking that they were going to take all of her bone marrow. But after further explanation, Barb agreed.

(04:47) Barbara Lowry: The first day I went to the hospital, the nurse just pointed down the hall and said, "Her room's down there." The nurse didn't even go with us to the room. Mom just took me down there. We were on a different floor than Nancy.

(05:04)  Mom took me into the room, and then she went to get my doll or do papers or something, so I was alone, and I was thinking, well, now what? I should be in bed because I'm in the hospital, but I'm not sick, and it's the middle of the afternoon. What if the nurse comes and asks me what I'm doing here, and I won't know what to tell her? I hid between the bed and the nightstand until mom came back, and then I popped out so she wouldn't know that I'd been hiding.

(05:34) Moderator: On August 12th, 1960, Barbara was placed under general anesthesia, and bone marrow was collected from her hip bones and shins. She was stuck 44 times with an 18-gauge needle, extracting a teaspoon or two of marrow each time. The marrow was filtered and then taken to Nancy's room and transplanted into her over the course of an hour.

Collecting Barb’s bone marrow: “I don’t remember any pain.”

(05:57) Barbara Lowry: I didn't complain of any pain, and I don't remember pain. I remember being in the operating room and looking up and all these doctors were looking at me through the ceiling. I thought I was just imagining what it looked like to me. And somebody said, "This is an operating room, and because it's a teaching hospital, they have a window in the ceiling where the students can look down on the table."

(06:24) Moderator: Nancy's blood count steadily started to improve, and she was up and out of bed and on the move.

(06:32) Nancy Lowry: I remember as I felt better, getting up in a wheelchair. One day, my aunt was pushing me around the ward in the wheelchair, and the nurse came up behind her and grabbed the wheelchair out from underneath me and said, "Walk. It is time to walk."

(06:52) Barbara Lowry: We were riding a trike, this was a bigger trike, and the halls were circular, so the nurse's station and all that was in the middle, and the rooms were on the outside. So the halls were circular, and we'd ride the trike around and around. Nancy was riding the trike and I was riding on the back. I was standing on the back plate. And because we had Dr. Robins and then Dr. Finch, we thought that it was funny that they were bird names. I was going, "Dr. Robins is a bird," probably way too loudly.

(07:30) Dr. Robins called me in his little office and told me I needed to be more gentle with Nancy. I was a little offended because she was riding the darn trike, and I was just hanging on the back. If he had told me we were being too noisy for the other patients, I would've understood that. Or maybe he was just embarrassed that we were calling him a bird.

(07:58) Nancy Lowry: I have never had any complications. I didn't have graft-versus-host disease. I was basically in the right place at the right time, and so I like to think of it as I basically made it home free.

A valuable resource: “The gift that I've been given is these last three years... when I became aware of BMT InfoNet.”

(08:12) I think that the gift that I've been given is these last three years. About three and a half years ago, I became aware of BMT InfoNet. They're amazing people, it's an amazing organization. I was telling Susan about my transplant, and she then consulted with Dr. Applebaum at Fred Hutch Cancer Center. They then facilitated me talking to doctors, well-known transplant specialists, and one of the other early survivors.

(08:53)  And I've learned so much about my transplant that I didn't know. First of all, about how serendipitous the transplant was. I thought that they had this plan, that they'd planned for Dr. Thomas to come here from New York, and there was no plan. I thought that Dr. Thomas himself did the transplant. I didn't understand that it was the pediatric resident, whose name was Dr. Moreno Robins, who actually did the transplant because Dr. Thomas was from New York, and he didn't have privileges in Seattle, and it would have taken too long for him to get privileges. And so Dr. Robins did the transplant, and Dr. Thomas stood alongside him and explained what to do. I didn't really understand that until later.

What does being first mean?: “I knew that I was the first, but I didn't really have any comprehension of what it meant to be first.”

(09:56) The transplant took place about two and a half weeks before Barba and I turned seven years old. I was seven when I left the hospital, and I knew that I had almost died. Nobody held that from me. I knew that I was the first, but I didn't really have any comprehension of what it meant to be first. I knew that it was a gift because adults around me told me that it was a gift. And what I remember, and I still remember, is the sense of wonder, because this was 1960 and breakthroughs were few and far between. People regarded each new thing with a sense of wonder. I just remember this idea that something had happened that was just so improbable.

(10:53) So, about 20 or 25 years ago, I did some research on the early history of transplantation, because in the newspaper article about my transplant, it mentioned two other cases, and it made it sound like those two little girls were still alive at the time of my transplant. So then I wondered, was I really the first, or was I the second, or the third?

A successful transplant but a terrible cost for others: “For every transplant that I read about, the child died.”

(11:18) So I went back and, indeed, both of those girls had died prior to my transplant. They both had leukemia. I read every reference attached to that article, and then I read other journal articles, and finally, I consulted newspaper archives, as I'm a genealogist. And for every transplant that I read about, the child died. Every single one. And then I knew that I was the first, but I also finally appreciated that the success of my transplant had come at this cost, this terrible cost of all these people who died. People talk about survivor's guilt, but I feel very, very humbled that it was that hard [for them].

(12:21) One of the things that the doctors, whom I talked to in the last couple of years, gave me was an explanation of what the world was like in 1960: how hard it was, and what everybody was up against. Not just the patients and the families, but the doctors and the researchers and the ethicists.

(12:45) On one hand, you had newspapers shouting out the news that five or 10 years from then, no child would ever die from leukemia again. This was in the mid-to-late 1950s, before my transplant. On the other hand, some doctors and researchers said that bone marrow transplants would never ever work. You could never get past the point of rejection. You couldn't cure the cancer; it was just going to come back. People with leukemia, kids lived maybe a few weeks to a few months.

(13:18) I remember reading this article, a memoir that Dr. Applebaum had written about Dr. Thomas after Dr. Thomas died. I had the impression that there were maybe a couple of dozen bone marrow transplants that had been attempted before mine. But in this article, Dr. Applebaum said, between 1958 and 1962, there were 154 attempted transplants and they all died. So I survived in 1960. There was a second successful transplant also in Seattle in '62, and then a third one in '63. And even through the rest of the '60s into the mid-70s, there were so many more failures than there were successes.

From Wonder to Expectation: “ There was a sense that those advances were hard won…and now people just expect the treatment to be there.”

(14:13) One thing I still remember is us talking about that sense of wonder that I observed when I was a child. When I grew up, I became a public health nurse, and I primarily worked with kids with special needs. At the beginning of my career, I remember seeing kids with either prematurity or certain genetic conditions who either didn't survive or had very poor outcomes. But at the end of my career, kids with those same conditions were born and doing just fine. So I'd sit there and think 'what a wonder'.

(14:55) In 1960, there was a sense of wonder, awe, and appreciation. There was this sense that those advances were hard won, and people recognized that that took a lot.

(15:11) Now, I think the pace of technology has become so rapid that people expect the treatment to be there. They expect that the doctors have one more miracle to pull out of their hip pocket. And so when things don't go well, people want to blame somebody and think that, oh, the doctor wasn't good enough, or the hospital wasn't good enough, when, actually, there are limits to what medicine can do, even today, even given the best of care.

(15:44) Barbara Lowry: Because my parents were educated and they trusted the doctors, they believed the doctors would do what they had to do, even though they knew that there was a chance it wasn't going to work. They put their trust in the doctors. They were willing to go through this experimental transplant just with the hope that even though it hadn't worked before, it was their only chance.

The Power of Persistence: ‘Dr. Thomas kept on trying…and he never gave up, even though nobody else believed in transplants for a long time."

(16:20) Nancy Lowry: I think these past three and a half years, since I started working with BMT InfoNet, have just been the most incredible journey. It's been very empowering as I've learned stuff that I never knew about my transplant. And it's been very, very humbling when I recognize just how sick I was. It just feels like even more of a gift to have been given the experiences I've had these past few years. I still can see that sense of wonder as more progress is made in different conditions.

(17:02) I think that what people say to me when they hear about Dr. Thomas is that he had all those barriers. He had all those people who didn't believe in him, who thought that what he was doing was unethical and criminal, and he kept on trying; he never gave up in the end. I think what's amazing is that he just kept working, kept trying, and kept believing in it, even though nobody else believed in it for a long time.

(17:35) Barbara Lowry: Dr. Robins was a resident. As a resident, to be under this top researcher and doing this actual transplant, that had to be just terrifying, I would think.

(17:57) I always tell people living with a chronic illness, "At least get up every day and get dressed and open the curtains. Go on with your life to the extent that you can. If you can't take a shower, just wash your face. Whatever you can do to keep going. Even if you struggle, and some people don't survive, just know that you're making a difference for the next people down the line."

(18:31) Nancy Lowry: I think that despite all the challenges you face, just to keep on getting up every morning and living your best life. I really admire that.