This is a story about a mother of twins in Vancouver, WA, cancer in a four-year-old boy named Declan that came disguised as chicken pox, a diagnosis that turned terminal after two failed transplants, and how in the end, peace with her son’s passing– for both of them – came as the credits rolled on a movie a month out from its global premiere.
That screening was Lauren’s last hope for her son; its release in six months was her first thought as the medical team told her Declan had had just two weeks to live, and her “obsession” with finding a way for him to see it early began before she even rose from the conference table.
Declan’s story isn’t about his months-long hospital stays, the ravaging effects of the treatments on his body, or the heartbreak that befell his family as his two remissions failed. It’s partly about how he never stopped being a kid – Lauren’s memories are full of images of him jumping off hospital beds, even though, with a low platelet count, he bruised like a fresh peach.
No, his story is about living with an expiration date set on a clock he never learned to read, and with the freedom that comes with choosing not to limit your life’s aspirations by only what’s been “possible” before.
When Declan was given two weeks to live, he took five months, just long enough for Lauren’s wish to come true. In a blacked-out movie theater three weeks before he died and with help from a group of Navy SEALS, actor Chris Pratt, and a phone call from Los Angeles, it did. And with it, came their peace.
Hope isn’t always where we think it is, and it rarely comes true the way we think it will. The night Declan passed away, Lauren got an email from one of Declan’s doctors saying that medically, he should have died a year ago. Her response? “Declan had a life to live, so he lived it,” all the way to the secret showing in that movie theater. And then home again, first to a house with an empty chair in the dining room, and then back to Bloodworks, where everything – and all the lives she helps save – is for him.
Chris: Hello. My name is Chris Pratt. And this video is for Adrian and Declan. These are two young guys I heard about, and I heard about the struggles that y’all are going through. I send my love and my thoughts and my prayers to the Reagan family. So sorry for what y’all are going through, but I just wanted you to know that I’m thinking about you. I hope that might put a smile on your face. I think you’re great and I think you’re special, and that you are in my prayers and my thoughts, and I love you.
Lauren: It turned out that he had a really aggressive acute myeloid leukemia. So this is, I believe it was a Saturday and I’m like, “Okay, we need to start treatment almost immediately. Go home, have a day, pack everything. You need to pack enough supplies. You’re gonna be here for at least 30 days. Come Monday.”
Bill: Cancer comes into your life like a thunder, out of nowhere, always disguised as something else and never in a good mood. For Declan Reagan, then just 4 years old, it was little red spots. At first, just a few like chickenpox said his mom, Lauren, and then all over. How strange, she thought. And to urgent care, they went surely expecting a rash, something normal, something calm, something bearable.
They took his temperature and one look at him and said, the spots were petechiae, a word vaguely Latin, that meant what came next was a trip to the emergency room at Randall Children’s Hospital in Portland and blood tests that revealed his platelet count was eight. Acute myeloid leukemia, they said. Another word that felt Latin, but also sounded close enough to do some real harm and more commonly known as a word that starts with C and ends with ancer, and how could this be happening?
I’m Bill Harper, and this is a special episode of “Bloodworks 101,” the podcast produced by the Pacific Northwest primary blood center to inspire folks to donate time, money, and their voice to patients in our community who need our help.
This episode is special to us because Lauren Reagan is one of us now. She describes her path to now working at Bloodworks, as coming home. A perfect continuation of her son Declan’s story, so that the ending is hope not heartbreak. It’s a story as Lauren says about breaking the rules, pushing the boundaries, and filling your life with as much living and joy and love as you can. And yeah, that really was award-winning TV and movie superstar, Chris Pratt, saying he was pulling for them. More on that later.
What was it like finding out that Declan was sick, and his symptoms in the beginning, and how you came to have that be your reality on things? I mean, it’s unimaginable for everybody, but for that to strike so close to home.
Lauren: How quickly 48 hours can change your entire world and perspective. So we were getting ready to fly to the East Coast to visit my family, and Declan had these little red spots that kind of would come and go. And I kind of just put it off. I’m like, after our vacation, I’ll take him to the doctor. And I went to work one day and in the course of 12 hours when I came home, head to toe, just these little… it wasn’t chickenpox, it wasn’t a rash, these little spots. So I took him to an urgent care.
Lauren: It turned out to be petechiae. So I had taken him to urgent care and they just visibly looked at him and they’re like, “You need to get to an emergency room.” So we got to an emergency room. They knew we were coming. We went straight in, they did blood work and they’re like, his platelet count is eight.
Bill: Oh my goodness.
Lauren: So they were like, you need to take him to the children’s. So we went to Randall Children’s Hospital in Portland, and they ran further tests. They thought he had ITP, which is a platelet disorder, but then the following morning when we met with the director of oncology, it turned out that he had a really aggressive acute myeloid leukemia.
So this is, I believe it was a Saturday, and they’re like, “Okay, we need to start treatment almost immediately. Go home, have a day, pack everything. You need to pack enough supplies. You’re gonna be here for at least 30 days. Come Monday.”
So where do you go? I come home and I have my 4-year-old. So Declan actually is an identical twin. So I have two, 4-year-olds at home and like, how do I separate them? That night in the hospital is the first time ever in their life they had ever been separated, and now to separate them heading into what was gonna be at minimum a six month battle with a really aggressive blood cancer.
So, then I always call it cancer land. So that’s where my story begins. Declan at age 4, we enter cancer land, and we start learning all the things. Things that, you know, they always joke that they’re like momcologists because we become experts in our children’s cancers, blood counts and all these things overnight.
And it was kind of always evolving because, you know, we went in and were like, we’re going to beat this. Declan went through his initial treatment and we’re like, yes, five months of remission. And we’re like, we’re golden. And then he relapses.
So now it’s like, okay, you have a little bit more time. This time, the doctor, the oncology team, they’re like, okay, you now have two weeks to prepare. I was like, two weeks. This is easy compared to the 48 hours that we had before. And, you know, I knew what to expect and we knew we were heading into bone marrow transplant. So that took a little bit more time and we just started learning different things.
And throughout all of this, Declan’s getting red blood, you know, getting blood transfusions, platelet transfusions, and there’s no substitute for it. I just remember that that first weekend of treatment, it’s 10 days straight of chemo. And I mean, three different types of meds, like three different types of chemotherapy with anti-nausea meds.
Chemo knows no difference between platelets, red blood cells, and cancer cells. It’s just gonna take it all out. So having blood constantly coming in, constantly doing blood transfusions and platelet transfusions to keep him safe. And platelets were so key because telling a 4-year-old to not jump off a hospital bed, just, you know, naturally wasn’t an option. So I think that’s the most amazing thing to see was Declan and all of his friends in the oncology ward. These kids would be so sick, but yet pulling pranks on the nurses, jumping around, causing all chaos. And you know, it was so inspiring.
Bill: They just still had to be kids. It’s all they knew.
Lauren: Yeah. And what’s crazy if you ever think your kiddo is on a sugar high, see a kid that has a very low hemoglobin count and then you give them a fresh bag of blood, it is like sugar times a hundred. And after so long, I could tell without even needing a blood, I’m like, it’s like his red count’s down. He’s not moving as quick as he would.
And it’s so funny, then the labs would come back like, oh, we’re doing a transfusion today. I’m like, I should be a gambling person at this point. You just learn. Each one of…you know, all the different moms I became friends with during this journey, we’re experts in our kids, and mom gut is a 100% always gonna be right.
And not even, you know, as it evolved and Declan had his bone marrow transplant and then two months later, he relapsed from that. And that’s when we started having the conversations of the likelihood of him making it through this. And then it comes time to where they tell you that your child’s terminal.
After a failed second transplant, they let us know that there was an option for a third, but you had to make at least 60 days because certain chemos you need to have out of your system for so long before they can try and initiate something now.
While I’m sitting there with our doctors, they’re like, “We think he only has about two weeks.” And my response was like, I will see you in 60 days and we’ll run these tests. Other than that, I need you to discharge me out of the hospital because I’ve been here for 52 straight days. I’m ready to have my house. I don’t know who you need to call, but I’m packing my stuff. I’m taking my kiddo home.
Bill: Don’t get in this mom’s way.
Lauren: Yes, true. Doctors and nurses across this area got to know me. Even now a lot of my friends that are going through treatment still, or their child has relapsed and going through, I was like, no matter what, if you know, like you know your kid, definitely advocate for them because you know best. The doctor knows like the medical staff, but like, you can read your child and you know where he’s at. So that’s where I was at. I was like, cool, I’ll see you in 60 days. So they gave me two weeks and I was like, okay.
And the funniest thing is like, I’m sitting at this table and they’re telling me, like, my son has two weeks left to live. And my first thoughts, this is January of 2018, was when he was admitted in November, the trailer for the new “Jurassic World: Fallen Kingdom” came out. Declan is [inaudible 00:10:30], like beyond belief. And they’re telling me my son has two weeks live, I’m like, “The movie doesn’t come out until June.” I’m thinking in my mind is like, my son’s not gonna be able to see this movie and I start somewhat obsessing about it a little bit.
So we leave the hospital, Declan we took him to make a wish, we did. He wanted to go to Jurassic World so we went to Hawaii. He got to go to the movie set, which was amazing. Even today, like his brother still talks like that. He’s just like, I want to go back to Hawaii. He vividly remembers, you know, how much energy Declan had then.
And even the hospitals in Hawaii, we rotated around where we spent one-day getting blood transfusions and platelet transfusions. So we spent one day on this vacation getting blood products to make sure that Declan could still rock and roll.
Bill: So part of your vacation plans was like, okay, we gotta have a place to go to get our son the blood products he needs in Hawaii very far away from home so that we can have this moment at perhaps the end of his life. It’s so amazing.
Lauren: It was the logistics between our medical team, our hospice team, because we were at both children’s hospitals in Portland so we worked with, you know, those hospital teams. And I mean, how it all came together in this community is just amazing. So we went to Hawaii. It was fantastic. We started immediately reaching out to be like, who can we call? How can we get this movie? A friend of a friend of a friend down the line was able to get Chris Pratt to make us a video and he sends it to us.
Bill: Remember that?
Lauren: And it’s just…you know, we’re going about our lives. So Declan ultimately passed end of May, May 28th of 2000 or, oh my Lord, May 25th of 2018 is when Declan passed away.
And about three weeks before, I got a phone call and it was the studios, and they’re like, “We just wrapped final production on ‘Jurassic World: Fallen Kingdom.’ We’re flying in a producer.” They rented out an entire local movie theater, and we couldn’t say anything at the time. And they’re like, listen, like we’re coming. So the owners of the movie theater were there, security, producer, and my family, and we got to see the movie.
Bill: Oh my gosh. I’m getting chills.
Lauren: So my final thoughts with my son, you know, where you start accepting like this, but I’m like, we are going to have the best time ever. Declan at times would be like, 2:00 in the morning be like, I really want this toy. Okay, let’s go. We’re going to Walmart. Like, you want ice cream for dinner? All right. You want hostess cupcakes? Let’s…you know. You just want to hang out on the couch, stay with me? That’s cool. Like that’s what we’re going to do. And I was so at peace by the time we got to see that movie because that movie in my head was like, that was the endpoint that kind of like wrapped it up for us.
And it’s, you know, even logistics of another hospital here in Vancouver, because Vancouver to Portland’s a little bit of a commute with traffic and to get, you know, to do a full blood transfusion takes quite a long time so we would have to spend 8 to 10 hours at a hospital. So we worked with our local hospital that just happened to have a NICU nurse that was trained in bone marrow transplant from Seattle. So we had a special nurse, her schedule revolved around us.
Bill: Oh my gosh.
Lauren: So that Declan could go in once or twice a week, get his blood transfusions and then come home and live his normal life. It was just amazing. And those nurses, when we made the decision, and ultimately we made the decision to stop the blood transfusions because at that point, Declan was getting four units a week and his body was just burning through them.
Bill: He was sick. That’s definitely… wow.
Lauren: Yeah. So like we would give him four…so a normal hemoglobin is between 12 and 14. In those final weeks of his life, we’d give him four units, and three or four days later, his hemoglobin would be at two. The cancer at that point had taken over. So we made that decision, but the entire nursing staff came together. We celebrated that last blood transfusion and like we went home.
But like I said, it was very peaceful, but then what comes after is like we lost him and the community that came out for his Memorial service included blood work staff members. So that’s like two-and-a-half years ago, and now I’m onboarded and I’m an employee, and I get to continue to share Declan’s story because after you go through something like that, it’s like, what do you do with your life?
Lauren: And what do you do with this experience? There was so much meaning behind blood donation, and I had had small glimpses of it as a child, but truly my experience with Declan, you know, just changed it. And Declan became like his own little blood works advocate. He loved blood drives. Because we would host them on his off time, like when he wasn’t in the hospital.
Bill: Off time.
Lauren: And we would call them like his blood parties. I have pictures of him holding adults hands as they’re like looking away being squeamish of the needle. And he’s just sitting there and be like, this is nothing. And so we did…and it was funny. So for his fifth birthday and his sixth birthday, there was blood drives. And so his sixth birthday was his last one. And his brother was in school that day, we were gonna do cupcakes with the school, but that morning, me and Declan went and got a bunch of donuts. Like this kid loved…donuts and cupcakes were kind of like a staple in our diets for, you know, our cancer journey.
Bill: It should be.
Lauren: Because there’s nothing better I’ll see, if you have to like eat something, it might as well be a cupcake or a donut. So we went and got a couple dozen donuts and we went to all the Bloodworks blood drives, and the blood center that day, and Declan just like rolls up. Like he already knew a lot of the phlebotomists and like the people, and he’s just like out there just like shaking hands, just being awesome.
Bill: Making business deals and… Yeah.
Lauren: Pretty much. He’s a mover and shaker being at 6, but it was fantastic. And then, you know, on the day of his memorial, obviously I’m overwhelmed, there are so many people and, you know, people are coming and talking to me. And then all of a sudden like here comes like Bloodworks employees, because I recognized their faces and like them giving condolences to me.
Well, my first day hired at Bloodworks, I go to the center in Vancouver and there’s a familiar face of people that were at my son’s Memorial service. And it’s so full circle that I work alongside these people. And I’m so excited to just continue Declan’s legacy of everything because it is such an impactful story. So in the end of all of his treatments, so about two-ish years, he did 76 red blood cell units, and then 108 platelet units.
And I just sit there and think of like how long it would take me, like me personally, to donate 108 units of platelets. One person, that takes years, where an entire community was coming together. And even the four units a week while he was in hospice care, he was given two weeks to live. He lived five additional months and getting that blood product. And that is a community-wide effort. And I am so eternally grateful for all the donors over those years because I, not once sitting in the hospital being like, he’s not acting right, he needs a blood transfusion. I never thought it wasn’t gonna be there.
Bill: Never any question, yeah.
Lauren: Yeah. It never even came across my mind that without these donors… And like I said, I’m eternally grateful because this community here in the Pacific Northwest gave me five months with my son that ultimately I could have not. It could have been very quick. It could have been a week or two weeks, but with the resources given by Bloodworks Northwest, I was able to have that time. And he got to see that movie, which in the scheme of a 6-year-old’s life, what is the most important thing? A Jurassic world movie is number one.
We got to see it about four weeks before its world premiere. So I always joke that I got to see the movie before Chris Pratt even did, because they told us they’re like, you are maybe like the seventh or eighth person that has seen it. So they had called us as soon as it was finished. They’re like, “We just finished it and we know you have been waiting for this.” And I’ve never cried so much on the phone just hearing that like…they were like, this is the day we’re flying in, we’re gonna be there. Like we’ve rented out this whole movie theater, so it was like blacked out so like nobody knew what was happening. They were like, don’t say anything yet. I was like, I won’t say a word. Do you need me to send an NDA? Like I will sign whatever. But it was like such a magical experience for my boys.
And my other son, like Adrian, like he just remembers that, and he remembers his brother being sick, but he also remembers all of the fun. And he remembers the nurses that they would team up and torment and just play pranks on. So as much as it was such a hard experience, there was a lot of levity to it, and a lot of good came out of it because my child’s just one story out of thousands and thousands and thousands of childhood cancer.
And then, you know, there’s so many other people that have different types of cancers and traumas that happen and just like natural disasters. You never know what could happen. So always being ready, and so that a mom can sit in a hospital and worry about something else, and that the unit of blood would be there for her or the unit of platelets so that her child… I have so many stories of just him jumping off a couch and hitting his head on the side of the bed. And when you have like a low platelet count, it’s like, oh my God. Yeah, the doctor oncologists are also like, oh right, let’s see this, like why is he bruised here? Like what did he run into?
Bill: That’s so sweet and magical that he’s so incredibly sick, but you know, his brother and friends was like, well, we’re just kids anyway. Like, okay, so I’m super sick, but I’m gonna jump off this bed. I’m gonna torment people because I’m still a kid. That’s so beautiful. I mean, you mentioning the community of Bloodworks and everything, but community in Hawaii too. And you went all the way over there and people came together. We’ve been talking lately, blood donation is such a unifying thing. Like we always say, we all have it in us and we do. And to know that you can go pretty much anywhere.
The first blood transfusions I got were in West Africa and so it’s just…yeah, I know that feeling you’re talking about is like, you’re sitting here, my story didn’t end up quite like yours did, but like, you know, same as you are that you’re sitting there knowing that you relied so much on this organization, this service, these people, these donors you’ll never meet. You could never actually say thank you to, and you’re thinking, well, now what? Now what do I do?
Like I got 267 units of blood platelets and plasma from Bloodworks and there’s no way I could ever repay that, but you’re sitting here and you’ve got to give back somehow. And the stories like yours and we have others. Like you said, Bloodworks blood donors allowed us to have a life that he wasn’t really guaranteed. And because of Bloodworks and its donors, we had the life.
Lauren: Yeah. Some days it’s like you don’t even know how to put it into words because a lot of people when they meet me, they have no idea that I’ve lost a child to cancer. It’s not until we get down, you know, however, our conversation goes and, you know, they’re just like, how do you go on? And I’m like, one, Declan was very much at peace. He got to see the movie. He got to do so much stuff. And when he was ready to go, he left us.
But he also had impacted and brought so many people into my life that even through this grieving process that it’s really never-ending, it kind of opened my eyes to new possibilities and bring me together with all these different organizations and these amazing, awesome humans like the employees at Bloodworks Northwest that showed up to his Memorial service.
And then I turn around on my first day at Bloodworks, I actually get to really say hello to them and just, you know, be brought into. I always…as I’m reaching out to business partners, I was like, you know, for me, it’s coming home. It’s coming back to family with joining the Bloodworks family.
And it was time for me, you know, that I got five extra months, and in the span of him only being… So we were told this before his birthday. So, you know, I had these little milestones, like, all right, I’m going to get him to the option of the third bone marrow transplant. We’re gonna get to your birthday. We are gonna get to the “Jurassic World: Fallen Kingdom” world premiere. We’re gonna get these things done, but it’s just the time.
It was fantastic to just spend every day with him for five extra solid months. It was a gift, and I can never say thank you. That was really fun that like, I have like… I always donate on my left when I donate blood and then it’s, like, I have my tattoo of my Momma Dinosaur and her two baby dinosaurs.
Bill: Oh my gosh. Oh my God.
Lauren: So when I’m donating, I can just like look down and it’s like…you know, it faces me. And it’s like if you’re ever having a hard day or you’re struggling with something. Like for me, it’s just a little reminder of like, I’ve got my two little dinosaurs. Especially when I’m donating blood, it’s just, you know, reminding myself when I do get a reminder email that it’s been 56 days, I need to donate again to not push it off. There’s little dinos out there that are depending on it.
Bill: The night Declan passed away, Lauren got an email from the head of bone marrow transplantation at Doernbecher Children’s Hospital in Portland, where he was treated, saying that medically and with all the treatments he received, he should have died a year ago. Her response, that’s just who he was, breaking rules and having fun. That’s how we live with cancer, by living.
To me, Declan’s story is about hope you have to build yourself, the freedom of fearlessness, of the power of believing that just because no one’s ever done what you face now doesn’t mean you can’t be the first. Of breaking rules that don’t suit you, of making sure that what you leave behind is all the love in the world and people changed in every way for the better, just for having known you.
In six years and with the help of blood and platelet donors who never left his side, Declan Reagan did that. We did that together. His legacy is our hope and proof that the only way we get through anything is together bound by the blood that runs through our very veins.
And with that, thank you for listening to this episode of Bloodworks 101, and please remember to subscribe. I’m Bill Harper, and it truly is an honor to bring you these stories. Thank you for what you did for me, what you did for Declan, and what you do for people, one blood transfusion away from your second chances every single day. We’ll never know your name, but believe me, we’ll never forget your hearts.
Meet the Investigators (S2 E20) – Bloodworks Northwest Blog
We find investigators in a lot of places, mainly in movie and television crime dramas. But there is a group of dedicated investigators at the Bloodworks Research Institute in Seattle that looks into cases of life and death every day. In this edition of Bloodworks 101, host John Yeager introduces us to that group; Dr. Jose Lopez, Sumi Paranjape, Dr. Moritz Stolla, Dr. Jing-Fei Dong and Dr. Jill Johnsen. In this episode entitled, “Meet the Investigators,” you’ll learn that what drives them is a deep and abiding desire to save lives. Full transcript below.
Sumi: The research institute has been a best kept secret. I think that we have a lot of potential for advancing and expanding what we do and I’m just, I’m incredibly excited about that.
John: I’m John Yeager and this is “Bloodworks 101.” Every good story has a beginning, a middle, and an end. Every good mystery has a twist and some suspense. Your protagonist is a good guy looking for clues, Sherlock Holmes, Indiana Jones, Philip Marlowe, Sam Spade, the detectives on CSI, Columbo, Miss Marple. All of these investigators have one thing in common, they don’t stop until they solve the case. They keep looking for clues, but, you know, investigators aren’t just private eyes that we romanticize in the movies. You find them all over, all sorts of places like the Bloodworks Research Institute in Seattle. In fact for the next few minutes, you’ll meet five of them, Jose Lopez, Sumi Paranjape, Moritz Stolla, Jing-Fei Dong, and Jill Johnsen, all world class investigators on a mission to save lives. So we’re calling this episode, “Meet The Investigators.”
Jose: I’m Jose Lopez. I’m the chief science officer at Bloodworks Northwest.
John: By all accounts, a world class investigator who comes from a most unassuming place.
Jose: I come from a little village high in the mountains of Northern New Mexico actually about 8,000 feet high. It’s a little farming village. I grew up on a farm and ranch. We had cattle and subsistence farming. I went to school there until college. I went to college also in New Mexico before going to medical school there and coming up to Seattle for residency and fellowship. So at the moment, we’re working on a three-year plan to build the research institute. So I’m working with other members of leadership to develop a plan for growing in a sustainable way and also starting to recruit other investigators.
John: In that little town in the hills of New Mexico, Jose Lopez was nurtured by a natural curiosity and a stream that ran through his backyard.
Jose: I was basically always outside. So when I was in high school, I did not have good grades because I couldn’t stay in to do homework. I just couldn’t stay inside. And, yeah, there was a stream and it’s high enough up there that there are a lot of trout. And we had built a little swimming pool in that stream in the back, and that pool attracted lots of trout. They are really wary trout, but I used to go and walk in the field near the stream and collect grasshoppers, and then I would toss them into the stream, upstream of the…and let them float in, and just watch what kind of patterns of the water would take the grass-…where it would take the grasshopper and how the fish would react to it. And it basically taught me really a lot about their biology because I could actually do little experiments. What if I throw it here, what if I throw it there, what are they like. So I became really good at fly fishing just because of those little experiments. Yeah, so that’s how basically I’ve learned about nature. And sometimes I say that, you know, one of the goals of our research is to kind of put ourselves out of business to understand blood to the point that we don’t need to use as much of it. But, you know, I think that, you know, in the end we’re all trying to do something to make the lives of people better.
Sumi: I’m Sumi Paranjape. I’m the chief operating officer of the Bloodworks Northwest Research Institute. Yes, so we are…you know, the Bloodworks Research Institute is unique for many reasons. We are unique because of our scientists, we are unique because of what they do, but we’re very unique because we sit in a blood center. And that blood center enables us to have those opportunities to connect the laboratory science directly to the patients, you know. And that is…that in the end is what’s going to keep us going and what’s going to continue to make us, you know, the best in the world and the best at what we do. At Bloodworks, we study blood and specifically, we study the mechanisms of blood flow and how we stop blood flow which is called hemostasis, and we study the mechanisms of clotting or thrombosis. Our scientists also perform translational clinical research into bleeding disorders. This includes bleeding disorders such as sickle cell anemia and rare bleeding disorders. We’re also proud to work, we’re developing novel treatments for bleeding disorders specifically in women and girls. And finally, we have a very well established clinical program that develops and evaluates platelet and red blood cell function, and storage.
John: Can you accurately describe this place as a best kept secret and why shouldn’t it be?
Sumi: It is definitely a best kept secret. There is so much research going on at Bloodworks Research Institute that is just fundamental to new cures and fundamental to our understanding of disease. One example I’ll use is the recent complications that we’ve seen with the Johnson & Johnson vaccine. That is caused by…basically what’s happening is clots are forming in these women who were having issues and this is one of the things that our scientists are studying. And so the knowledge that they have combined with other medical knowledge is so powerful and will lead to additional cures, additional diagnostics, and really opportunities for prolonged life.
John: Biggest challenge right now in front of you?
Sumi: You know, I think the challenge that we face at the research institute is very similar to the challenge that many research institutes face, which is how do we create opportunities to translate new scientific discoveries into, you know, tangible and enduring medical treatments. One of the reasons I took the job was because the research institute is doing and is poised to do more translational research. And what we mean by translational research is how do we take basic scientific discoveries and make sure that they…that those discoveries can become treatments, cures, and diagnostics to improve the lives of patients.
John: You’ve told me before that you’ve spent years of your life in a lab. Why?
Sumi: That very recent. So when I was a kid, I had really severe asthma. Sometimes I would spend months and months of a year in the hospital. Sometimes up to half a year was spent in the hospital. You know, and so as a child, those experiences are formative and I came to realize that, you know, for my life, in my life, I wanted to find a way to give back to science and medicine. And at the time, it was more of a binary decision. So you would either do research or you would do medicine, and some people did both. But I made a decision when I was probably 9 years old that I wanted to be a scientist so that I could help to discover cures.
John: Dr. Moritz Stolla is also an investigator who works at the research institute. He’s German, originally trained in internal medicine and cardiology. He’s become passionate about platelets.
Dr. Stolla: Transfusion medicine is a subspecialty of clinical pathology and so this is… And since I was investigating platelets, it all came…it all made sense basically.
John: What was it about transfusion medicine and platelets that attracted him so much?
Dr. Stolla: Yeah. It’s a good question. I think it’s just…I just think a fascination with biology and mechanisms, and ultimately from a physician scientist point of view, also the ability to help patients, right?
John: Stolla says, yes, he does look at himself as an investigator who works off an instinct, a hunch, and a career’s worth of experience.
Dr. Stolla: I think so, yes. I think that’s part of the scientific method, right? We have observed things, we have a hypothesis, and then you try to disprove the hypothesis. And then it comes what you just mentioned, you have to do it thoroughly, diligently. Honestly also, I mean, a lot of… Nobody likes the most favorite hypothesis to be disproven, right? But the data are the datas is another commonly used slogan, right, in research where we just have to deal with it, right? The facts are the facts. The data don’t lie, right? That’s just the way it is.
John: And if you ask him why platelet storage is so important, he’ll tell you, the answers are a matter of life and death in combat zones and remote civilian hospitals all over the world.
Dr. Stolla: Yeah, that’s a good point. So the major…I would say the major problem with platelets right now is they can only be stored for five to seven days.
John: So I mean, it sounds like we’re getting to the heart of your research right now. What you’re saying is that the ability to understand storage of platelets does have lifesaving consequence, right?
Dr. Stolla: Yes, that’s correct.
John: Dr. Jing-Fei Dong is another investigator at the research institute. His field of study, traumatic brain injury or TBI.
Dr. Dong: Trauma patients often bleed out…bleeding uncontrollably. In fact, 70% of trauma patients got killed because of bleeding, but these are not traditional hematology but rather hematological presentation in non-hematological disease. This is a fascinating area because number one, I know a lot more about TBI because of my clinical training. Number two, how a tiny injury to the brain… You know, if you got a liver injury or you have a long bone fracture, that massive area of injury, so you have shock and you have bleeding, all of that understandable. But in the brain, the injury, normally measured in millimeter or centimeters, not in meters or not… You know, talk about bleeding, liver rupture, you can lose up to liters of blood in about an hour or less, where in a brain injury, 200 or 100 milliliter of blood loss can kill you.
John: How close are we to giving hope to somebody who has a traumatic brain injury? Are we making strides that give the ordinary person hope?
Dr. Dong: Oh, yeah. There are huge amount improvement.
John: And then there’s Dr. Jill Johnsen, an investigator who’s one of the hematologists at the Washington Institute for Coagulation in the University of Washington.
Dr. Johnsen: And I care for patients with bleeding disorders, and I do research on the causes of why we have variation in how we clot our blood, and why do we have trouble with our blood groups and transfusion. So I work at the intersection between giving clinical care, and trying to better understand why people have disease, and putting the two together to make both sides better.
John: What’s a normal day like for Dr. Johnsen? That’s a tough question. There is no normal day. It just doesn’t happen.
Dr. Johnsen: Oh, gosh. I don’t really have a good answer for that one. I really don’t have any days that are the same. You know, some days I’m seeing patients in clinic, some days I’m taking call over the weekend. So lots of days where I’m talking to the people in the lab to help think about how to troubleshoot an assay or coordinate that everybody’s getting that precious sample to the right place, and sometimes I’m sitting in meetings with my collaborators brainstorming, you know, what are the big questions we should be answering. The biggest question is why is everyone so different? But I can’t tell why. Everyone is so different from each other. So we have people that have the same diagnosis, they might even have the exact same lab value, but they bleed differently than each other. And that’s a really important thing to understand, why does someone who looks exactly like their sibling have different bleeding? You know, it’s probably something related to the rest of their genetic makeup or maybe it’s something about other things that…in their environment, but we really don’t understand that. And if I’m gonna take better care of people on the clinical side, I wanna know who can have a lot of bleeding and who’s not. And if I’m gonna do better research, I mean, to better refine these questions, so I can better say like, “Here’s the person,” and articulate, “Here’s exactly what they’ve got with their disease.” So I can say, “Oh, well, there’s a lab test that clearly the labs are missing something.” Well, what is that something the labs are missing? I work with a fantastic team. Like, you know, science is not a solo sport. It is absolutely a team you’re surrounded with, and how clever people can be, and bringing people together with different skill sets. It’s definitely a fantastic place to work in interdisciplinary science. We’ve got to have a new approach, bring new tools, go back to the clinic and say, does this make sense, what we learned from the clinic, go back to the bench, you know, we’re still missing the boat, why do we keep missing the boat, where do we think our blind spots are, and just keep going. And there’s never gonna be one answer which is why it’s complicated, but also why it’s so cool, you know.
John: As any good investigator would say, there’s never going to be just one answer. It’s always gonna be complicated, but I loved how Dr. Johnsen wrapped it up there. She says, that’s why it’s so cool. Well, that just about wraps it up for this episode of “Bloodworks 101,” except there’s one thing I need to tell you about. On June 3rd, join us for an evening of science benefiting the Bloodworks Research Institute. Our investigators will take you on a virtual exploration of the power within a pint of blood. All proceeds from the event and auction will directly benefit the Bloodworks Research Institute, the innovative arm of Bloodworks, creating cures and advancement in medicine through lifesaving blood research. The Raise Your Pints event is free to attend. Upgrade your experience to include beer and/or a gelato tasting box delivered to your home in time for the virtual event. Last day to purchase beer and gelato is May 26th. Complimentary delivery is available in Seattle, Portland, and Eugene. If you live outside these areas, please contact us prior to completing your order to arrange shipment so it gets there in time. Email us at [email protected] Register now at raiseyourpints.givesmart.com. It’s gonna be a lot of fun. All right, that’s it for “Bloodworks 101.” I’m John Yeager. See you next time.
2.6 challenge a charity animal charity blood if charitable giving charitable trust charity digital charity fundraising charity sector charity within community blood drive deseret industries donation di donations donate blood donate blood every 56 days donate locks of love donate plasma donate to deseret industries donating platelets double red cell donation food bank of the rockies fundraising platforms goodwill donation centers goodwill furniture goodwill near me heart charity homeless shelter donations homeless shelter donations near me how to donate hair to locks of love lds donations online lds tithing online locks of love donation locks of love hair donation online fundraising platforms pay tithing online lds pint of blood plasma center near me plasma donation small charities the blood center to charity to donate blood vanguard charitable whole blood donation womens shelter donation near me
Donate Blood2 months ago
Donor Center Series: Rockwall – Carter BloodCare
Donate Goods2 months ago
Homeless Shelters Near You: Making Homeless Shelter Donations
Donation News2 months ago
More U.S. households gave to racial and social justice in 2020 | Philanthropy news
Give to Charity1 month ago
Announcing new partnership between LimeLight Sports Club and JustGiving
Give to Charity1 month ago
How to get started with data in fundraising
Give to Charity2 months ago
Five tips for launching successful corporate partnerships
Give to Charity1 month ago
Community Foundation Update (09/11/2021) | Philanthropy news
Donate Blood2 months ago
Bound by Blood — and Liver — Stanford Blood Center