Blog of Bloodworks Northwest

The Day a Heart Stood Still - Sue Nixon Summer Edition (S1 E16)

An update to the remarkable true life story. Seattle’s Sue Nixon owes her life to the quick response of genuine Good Samaritans and paramedics at Medic One, the tireless research of scientists at Bloodworks Northwest’s Research Institute, and the blood donations of people she may never meet. But it all started The Day a Heart Stood Still.    

Listen below or read on for a full transcript.

Bill: I was back in bed resting and she burst in and she said, “You need to go downstairs now. The doctor already called an ambulance.” She said my blood counts were still low that it was an absolutely an emergency situation.

John: Hi. I’m John Yeager, and this is Bloodworks 101. Our monthly podcast brought to you by your friends at Bloodworks Northwest, the leading supplier of blood and blood products in the Pacific Northwest from near the Canadian border to Southern Oregon.

Today’s episode is about one of our producers here at Bloodworks 101, Bill Harper. Now you’ve heard Bill’s voice on some other episodes in the past like the one about what happens if we don’t have enough blood, with Vicky Fenson [SP], and the one about a remarkable little boy named Isaac Williams, the four-year-old who fought off Stage 4 neuroblastoma. Today, he remains an inspiration to his folks.

In today’s episode, you’re gonna get to meet Bill and hear his remarkable story. We call this one “When All That’s Left is Hope.” Here at Bloodworks Northwest central location on Seattle’s First Hill, Bill’s title is Communications Specialist. It’s Bill Harper’s job to look for stories.

Bill: I look for stories here. I do. I think that telling stories about people’s…events that happen to them in life, I think, is a really great way to learn about humanity and to think about, you know, what’s the most important to you and reinforce or change your most preciously held beliefs.

John: Just before Bill Harper and I sat down to record this segment, Bill told me about something he encountered one day while he was sitting in the Bloodworks Northwest lobby. He noticed a delivery man with a container of CAR T-cells. What are they? The experts tell us that CAR T-cell therapy is a cancer treatment that uses a patient’s own immune system cells called T-cells. After these cells have been changed or modified, they can better recognize and kill the patient’s cancer.

CAR, I came to discover, stands for Chimeric Antigen Receptor, which represents the genetically engineered portion of the T-cell. T-cells are known as T lymphocytes. The T stands for thymus. That’s the organ of the human body where these cells mature. Are you still with me? Okay. Now Bill Harper’s natural curiosity was to ask about these CAR T-cell containers. There had to be some sort of story surrounding these containers because as Bill Harper knows, stories here at Bloodworks are often right under our noses.

Bill: Exactly. That’s exactly right. Yeah. So from time to time, you see this little couple of foot tall, they call it the mushroom, that they use to transport cord blood cells to go to give people a cord blood transplant to treat them from different types of blood cancer, but this particular mushroom was blue. And there were a couple of guys hanging out nearby and I went over and started talking to the guy.

He was a really well-dressed guy. Turned out he was from Kite Therapeutics and it was our second unit of CAR T-cells going out to a patient to help them with this revolutionary, you know, cutting-edge leukemia or blood cancer treatment that is really the talk of the town when it comes to blood cancer research and treatment.

And, yeah, I got to talking to the guy. And his company…we’re involved with his company and our partnerships with the hospitals in refining these cells in our labs and then sending them off to hospitals. And that’s a really exciting thing because I mean, that is absolutely the next wave when it comes to cancer treatment and getting patients and, really, getting humans one step closer to the cure.

John: And you know about leukemia.

Bill: I do. Yeah. I had myself, I had leukemia nine years ago when I was in West Africa and suffered the…well, suffer is a strong term, but underwent the standard treatment chemotherapy, radiation, STEM cell transplant, and kind of living with the side effects of all of that, that we were just talking a minute ago about how a lot of times, for a lot of people, myself included, the side effects of the treatment are more significant than the side effects of the disease itself.

John: How bad did it get for Bill Harper? You’re about to find out. It was about 10 years ago, the summer after Bill Harper’s junior year of college.

Bill: I had a job. I had a pretty good GPA. I had a girlfriend. I had a car. I had, you know, had it all, if you will. And I was really excited to go on this trip and pretty much the whole time I was there, it was fine.

A couple of things in retrospect happened before we left that sort of would have been indicative that something was wrong. I got pretty nauseous and things, I think two days before, but things started to sort of…like weird things. I think two weeks, a week or two into our time there we were body surfing in the ocean, I got caught on a wave and it spun me into the ground really hard.

And so I got…it was just a scrape like up at my shoulder, but then over the next day, it grew to a bruise the entire length of the top of my arm. Which, you know, as a healthy, you know, competent, confident 20-year-old, like I thought, “Oh, well, it’s just cause it’s so incredibly hot. My body is, you know, grew up in the Northwest. I’m not used to this kind of thing. This is just how a Pacific Northwesterner’s body responds when it’s 120 degrees. I wasn’t built for this.”

And so that was the first thing and I just sort of, you know, passed it off as like, “Oh, that’s no big deal.” The second thing that happened is when I was in the desert, I was taking a nap. And I sat up when I woke up and there were these black spots in my vision and I just thought that was kind of weird. And I thought, “Well, I’d sat up too fast,” but then the black spots never really went away.

And then the rest of my team kind of circled back and picked me up because we were getting ready to go back to the U.S. and they noticed that I was really pale and had lost a lot of weight. And the bruise was still there, and then we got back to Dakar and we were staying at an apartment in the city that was up a flight of stairs. And when we were walking up the flight of stairs, I almost didn’t make it. I literally almost passed out.

Yeah, you pass these things off because, “Oh, well, you know, I didn’t have enough water,” or “I’m just…” you know, something. And there’s always a really good excuse. And so my professor who had spent a number of years, a lot of her life in Senegal and knew that this wasn’t normal, took me to a doctor and then a second doctor. And they both said like, you know, I just needed to rest, no big deal. And so I did that, but I still didn’t get any better.

And then she took me to a third doctor and he wanted to get a blood test, which I’d never had before. And so I was really like freaked out with the needles and everything and it happened to be like in the sort of, like off of an alley somewhere in Dakar, Senegal, this like blood draw clinic or something.

And they did this really weird. Like we found out afterwards it’s incredibly archaic test where she like prick my finger and take a little piece of tissue paper and then hold the tissue paper up and time the amount of time it took for my blood to clot. And then we went back to the apartment and she kind of…I was back in bed resting and she burst in and she said, “You need to go downstairs now. The doctor already called an ambulance.” And she said my blood counts were so low that it was absolutely an emergency situation.

I went to the hospital that night and spent four days in the hospital, basically getting back-to-back blood and platelet transfusions. They didn’t tell me why. The Senegalese medical system has, in many ways, not advanced from the colonial medical system that they had before Senegal became a country in 1950. So if they don’t have a confirmed diagnosis of your condition, they will not tell you what they suspect your condition is.

So the entire time I was in the ambulance, and in the hospital I thought that I had malaria and that I was going to go back to the clinic I went to in Senegal and paid a lot of money for the antiretrovirals and tell them that I wanted my…you know, like a whole…it’s like, you know, “Okay, it’s malaria. Like it happens.”

And then she came in and she said, you know, “It’s bad enough that you can’t fly home commercially.” And so she said they’re going to send a medivac. And because I’m a pilot, my first question was, are they going to send a Learjet? And that made her laugh because I knew that that was the case. And it was a Learjet but… So they didn’t actually tell me that it was leukemia until I was medivac-ed to Nuremberg in Germany and my mom was able to meet me there.

And we were in a patient room for an hour and he came in and he said, “So what did they tell you in Senegal?” And I said they didn’t say anything and he leaned back in his chair. It was actually the same…it’s like this round, this ubiquitous black round stool that they have in every bloody medical clinic I swear on the planet earth. And he leaned back and like it kind of registered in his face, like, “So I gotta be the guy to tell him this.” And he said, “You have leukemia.”

So I arrived at the hospital in Nuremberg in the emergency room, and then my mom was able to find me there. And the place was huge. And so I’m laying down on this bed and they’re like wheeling me around to where we were going to. And we passed underneath this sign that said “oncology,” and I didn’t know what that word meant. I’d never learned, like…I’m a little bit ashamed to admit this but I never gave it any thought. And just for whatever reason, and this sounds really dumb, thought it was the study of the practice of being on call for a job. Which sounds insane, I know, but like, you know, you don’t think about it. And then, finally, like, you know, my mom, of course, she worked in a hospital, she knew what that meant.

John: And what Bill Harper went through gave him a unique perspective on enduring more than he could ever imagine, and on the simple and profound importance of blood donation.

Bill: Exactly. Yeah.

John: You got a number for me?

Bill: I got a number for you, John. The number is 267 and that’s the number of units of blood and platelets that I received during my treatment. I had kind of an unconventional course of leukemia with a lot of infections that, really, people just generally don’t get. They’re pretty rare that I needed a lot of surgery. And so just with that and with, you know, STEM cell transplants, you need a lot of blood transfusions as it is. And with leukemia, of course, leukemia destroys your platelets so you have to get a lot of platelet transfusions for that itself, but then also in surgery.

And so, yeah, I mean, that’s a really big number. Certainly not a number that I could ever repay in my lifetime. And so that’s why it’s so special to be able to work here at Bloodworks. And then, you know, like we were discussing earlier, to find out that not only are we helping patients going through that kind of treatment, but we’re also helping them find their way to this new revolutionary like type that’s so so much better.

John: Looking back, what does the journey look like to Bill Harper?

Bill: Right now, sitting here, I’m going to have the scars. I have, you know, they replaced…I’ve gotten, you know, counting the original knees I was born with, I’ve had six knees in my life. And, you know, I know that there’s all the surgery and blood transfusion and some legitimately like teetering over the edge moments. A cardiac arrest for five minutes, you know, a catatonic state for a month and they didn’t know what was happening or why that was happening or anything.

Leukemia is incredibly treatable nowadays. It’s really…they’ve done incredible work with, you know, the Fred Hutchinson Cancer Research Center, which is supported by Bloodworks Northwest, Seattle Cancer Care Alliance, and with transplants. And, you know, my leukemia went into remission pretty quickly.

John: But where Bill Harper got into trouble, he says, was with infections.

Bill: I got a fungal infection, I think, two months after I got back to the States that they had to…the only way to treat it is to cut it out like it’s a tumor. And so they had to cut out seven of my ribs on the right side and a lobe of my lung. And when they told me that that was there, because there was like some swelling and some redness and then they didn’t know what it was, so they took a biopsy.

And he came in, and I remember exactly what the scene looked like. He came into my room. I was supposed to go home the next day. And he said, this is the attending physician, he came in and he said, “Well, you can’t go home tomorrow. And I said, “Well, why is that?” And he said, “Well, because we found what’s in your chest and it’s fatal.” And that was the first time that they had said that to me and like that…when I can see that clear as day and, you know, it’s just… I mean, but the thing is like that was a fatal infection. That was supposed to kill me.

You only find out how strong you are when you’re forced to find out. If someone had come to me when I was in like Anthropology class in 2010 at the end of like, you know, on the cusp of summer and said, “This is what my next 10 years are going to be like,” I would’ve said, “There’s no way. Like, I can’t deal with that. I can’t have 33 surgeries and 267 blood transfusions, and come back from Africa on a medivac flight. I can’t do that. That’s not me. I can’t…”

And I hear people say that all the time, like come up to me and they say, you know, “Oh my gosh, you know, your story is so incredible.” I couldn’t… I tell them the same thing. Of course, you could. You have things you want to do in your life and you have people you want to live for and you have, you know…you’re going to put up a fight. And I mean, that’s all I did.

John: Yeah. That’s all Bill Harper did. But now he’s got an anniversary coming up, July 4th.

Bill: Ten years, baby. Yeah. It’s crazy to think about. I mean, that’s a third of my life. I’m sitting here at 30 years old. And, you know, that…it has changed everything, working for Bloodworks now and able to talk to these families and these people that are in the same situations and even people in different situations. They have their own adversities and they have, you know, whatever’s going on.

And I’ve just learned, like, my story is a story about strength and human kindness. It’s about, you know, strangers just like taking time out of their day to donate a pint of blood that, you know, maybe was the last pint of blood that I needed to get to my remission or to make it through that surgery, or get the cardiac arrest thing dealt with.

And that’s the thing that you don’t know. And it’s a story, you know…I mean, a STEM cell donor, my goodness, you know. That’s just somebody signing up to, you know, donate their STEM cells to someone. And without her, all the surgery and all the blood transfusion and everything wouldn’t have mattered at all. They’re like, you just sit here and you’re thinking, like all the nurses and the doctors and things, and you know, when you realize like you are here today…I mean, all cancer patients, like you’re here today by the grace of other people.

John: And so as this 10th anniversary of a new life dawns upon Bill Harper, it emerges with a message.

Bill: There’s a lot of scary things that happen in life and that can happen in life and that do happen in life, but I really believe that, like you don’t know how much you can take until you don’t have any another choice.

John: Bill Harper planned on watching fireworks this Independence Day. He likes to joke that all the fireworks will be for him. I don’t know about you, but I can’t think of too many reasons that are any better than that.

Land of liberty, of thee I sing;

Land where my fathers died,

Land of the pilgrims’ pride.

John: Well, that’s just about it for this episode of Bloodworks 101. One thing Bill told me before we wrapped up was to stress the importance of blood donation. Make your appointment today by going to I’m your host, John Yaeger, for Bloodworks 101. See you next time.

Let freedom ring,

Let freedom ring,

Let it ring.

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September 2, 2020 2:00PM

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