Blog of Bloodworks Northwest

Coming Home from Cancerland: The Declan & Lauren Reagan Story (S2 E15)

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.

“I never thought it wasn’t gonna be there.”

-Lauren Reagan

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.

“This community here in the Pacific Northwest gave me five extra months with my son. I’m eternally grateful.”

-Lauren Reagan

Listen to the full episode here.

Transcript below.

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.

Bill: Petechiae.

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?

Bill: Exactly.

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.

April 13, 2021 4:51PM

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