In 2017, Isaac Williams was diagnosed with high-risk, Stage IV neuroblastoma at just 17 months old. Facing a course of treatment lasting the duration of his life so far, Isaac, his mother Kelli, father Dennis and older brother Isaiah endured the unthinkable, faced their worst nightmares, and clawed their way back to normal life. In this episode, we hear from Dennis and Kelli about their journey, from that awful moment when their world changed forever, to today, when Isaac is, as the slogan was for his blood drive, #IsaacStrong.
Listen below or read on for a full transcript.
Isaac was diagnosed with high-risk, Stage IV neuroblastoma at 17 months old. Listen to the Williams’ journey from that awful moment when their world changed to today, when Isaac is, as the slogan was for his blood drive, #IsaacStrong. Full episode here: https://t.co/rt7uJmx1Yy. pic.twitter.com/b3C9JvqIE5
— Bloodworks Northwest 🩸 (@BloodworksNW) May 10, 2020
Dennis: It’s kind of unbelievable. It’s kind of like, it sounds like almost like a story that someone else is telling us about our lives. Something that we went through that seems so foreign because although it was really…it was very recent and it was a very long period of time in terms of a treatment schedule, it was just like, yeah, it’s just like, it’s crazy how far he’s come.
John: This is “Bloodworks 101,” I’m your host John Yeager. “Bloodworks 101” is a monthly podcast brought to you by Bloodworks Northwest. We’re hoping these stories will educate or inspire you to give time, money, or blood. This episode we’re gonna call “Isaac Strong.” It’s about an incredible young boy named Isaac Williams here in Seattle and the fight for his life and with us to tell you a little bit more about Isaac Williams is our own Bill Harper. Bill, tell us a little bit more about Isaac. Like, how old is he?
Bill: Isaac Williams just turned 4.
John: What kind of kid is he?
Bill: He’s a regular kid now. I first met him, he came to Bloodworks Northwest for a photoshoot. And I still remember the day he came in next to his mom, and he put out his hands just so politely and said, “I’m Isaac Williams.” And he goes and he’s just being his silly little self with the photographer and everything. I’m standing there watching him and knowing what his story was and what he’d been through in his just short…you know, at that point, he was only three…what he’d been through in his short life. I was really moved to tears because he was so strong and so full of life and just knowing where he had been, I just thought I knew that he was gonna be an incredible story.
John: So, here’s Isaac Strong.
Bill: I met up with Dennis in his office in the Magnolia neighborhood of Seattle on November 15 of last year. When outside on the street below, Bloodworks was having a special blood drive in Isaac’s name. I began our interview by asking about the moment he and his wife, Kelly, got the most devastating news of their lives. This is their story.
Dennis: We brought him in because things weren’t quite right. He was getting fevers, he was more fussy than usual. He stopped doing things like shooting down the stairs on his stomach like a little rocket when you woke up in the morning. Like, literally it was like cold turkey. One day, he just didn’t want to put any pressure on his abdomen. Come to find out after, you know, multiple trips to the hospital that, you know, and us as parents saying, “Okay, you guys keep telling us to take Tylenol, we need something more than that. We want just to make sure there’s nothing else going on.” So, and it’s a good thing we did it when we did.
Easter, I’ll never forget Easter, was that 2017. Easter 2017, he had like 103-and-some-change fever and he looked like a little zombie. The next day, we take him into his doctor, his pediatrician. We asked for more tests or whatever needs to be done to figure out what’s going on. She sends us over to Children’s Hospital, they listen to his abdomen on both sides, do some blood tests. And then they tell us they want to take us up to the oncology floor. And of course, you know, that’s their…you know, without telling us he has cancer, they’re telling us we’re going to a place where they treat kids. So, it was pretty apparent something else was going on.
So, the day we went to Children’s, we were there for like two-and-a-half weeks, you know, getting tests and figuring out what kind of cancer and how aggressive it was. So, it turned out to be stage four neuroblastoma. Stage four high-risk neuroblastoma mean that he had…not only was there a tumor in his abdomen that was about the size of a kid’s Nerf football, not only was that there but it actually had spread to different spots in his arms and his leg. So, as soon as he was diagnosed, we figured out exactly what he had. They showed us the roadmap, which was…I’ll never forget that day. You know, sitting there with my family, and them telling us it’s an 18-month roadmap to getting him to remission. So, I mean, the kid was only…he was only 17 months old to think about, you know, he’s gonna be in the hospital for as long as he’s been alive. And how the heck we’re gonna manage that was crazy to even think about.
Bill: Can you tell me about the worst…like, thinking back about all those months and, you know, all that time, he just turned 4, the worst day or the worst moment or the worst news or anything?
Dennis: So, give me a second. Because it’s funny, you don’t think about these things. But I know when the worst point was. It was after his first stem cell transplant. And I remember me and Kelly are sitting on either side of Isaac, Isaac in his highchair. And he just, you know, he just looked like those kids in the commercials that you see that that don’t make it and, you know, he lost a ton of weight, I mean, he’s a 2-year-old kid, he doesn’t have a lot of weight to lose. So, you know, he just looked like what you look like before you die. So, yeah, he recovered from that, he got better, you know, I suppose, yeah. Yes, yeah, the stem cell transplants and the conditioning that you go through to get ready for the stem cell, you know, that whole process was just, that was the worst part without a doubt.
Bill: What’s it like to look back on that now?
Dennis: It’s kind of unbelievable. It’s kind of like, almost like a story that someone else is telling us about our lives, something that we went through that seems so foreign. Because although it was a really…it was very recent, and it was a very long period of time in terms of a treatment schedule, just like, yeah, it’s just like it’s crazy how far he’s come, you know? So, like I said, the kid was running around here now, we’d be yelling at him for things that every other kid is getting yelled at in America, you know, “Stop touching that,” or, “Stop punching your brother,” or, “Don’t tell me no,” or stuff like that.
So, to see that how far he’s come in such a short amount of time is nothing short of miraculous. You know, I don’t know any other way to put it because we’ve known other kids that have had the exact same thing as him. Actually, haven’t even had as aggressive as diagnosis who have passed away, we’ve been to their funerals, same age, you know, same type of cancer, so we know the reality, you know. And luckily, you know, for whatever reason, you know, he’s blessed. He’s still here and he has a…can’t wait to see what he’s here for.
Bill: How do you think that this has changed him in terms of him…you know, obviously it’s not a typical 4-year-old trajectory in life.
Dennis: You know, it’s a good question. I guess that’s to be determined. I would say that, I don’t know, the kid is…Isaac has always been very stubborn and very particular. He wants things…like, when he gets what we call a grilled cheese sandwich, he doesn’t want a grilled…he doesn’t want bread that’s, you know, a traditional, but he wants a hamburger bun that’s been flipped inside out with cheese. He wants it to look just like a hamburger just with no meat. If it doesn’t look just like that, he doesn’t want it. So, we always joke, like, with this whole cancer thing, it’s like, if he’s half as stubborn with the cancer, with what’s going on in his body, he’ll be fine. You know, he sees the pictures, he sees, like, the whole Strong Against Cancer thing, he has a cape on, he’s flexing, you know. He sees how he is perceived coming out of…he knows he had cancer. He sees the scars. I mean, talk about something that’s, you know, a battle wound, the kid has a scar that goes from basically, you know, hip to hip and then up to his…right below his chest. So, I mean, that’ll be a reminder every day to him of what he went through.
So, you know, we’re gonna tell him his story, kind of what he went through when he can understand it and we can tell more detail, but I think it’s gonna do nothing but…I mean, you can already kind of see it him, you can see the fight in this kid. I mean, he doesn’t take no for an answer, he’s very determined, and I can only imagine when he can understand what exactly he went through when he’s 8, 9, and 10, I can only imagine what that’s gonna do for his character. I’m very curious to see what he’s gonna be when he is my age. Yeah, he’s a pretty cool kid. He doesn’t even know it yet. He doesn’t even know how cool he is.
Bill: It’s an incredible story, Dennis. If you could sum it up, like, if you can say something to, like, 20-year-old Isaac now…
Dennis: Ooh, jeez. Wow, I did not know this interview is gonna be…I’m not a guy who cries.
Bill: Hey, man, it happens.
Dennis: This might be the [inaudible 00:10:42]. But that is one thing that’ll get me when I stop and think about that. But what would I tell 20-year-old Isaac? I’d tell him that, “You have no idea how strong you are and that…I mean, if you can beat that, what can’t you beat? What can’t you do?” You know. So, I would say that…you know, I would say, “Set your aim pretty high because odds are you’re probably gonna be able to accomplish whatever you set your mind to based on this.”
Bill: You’re listening to “Bloodworks 101,” I’m Bill Harper. We’re gonna take a short break but when we come back, we’ll hear from Isaac’s mom, Kelly, about what life is like after cancer, and about the worries that cancer gave her that never really seem to go away. So, Kelly, now that it’s been 3 years since Isaac’s diagnosis when they told you that 50/50 chance, still can’t imagine that, but looking at it now, it’s hard to believe that they would even say that. He just looks like a regular, happy, bubbly 4-year old kid. And so, I just wanted to ask with everything that you’ve been through since, what’s life like now? What’s changed? And what do you think about and worry about?
Kelly: That’s kind of a weird…it’s a weird question to answer just because on one end of the spectrum where I feel good because Isaac is good. And that’s what we all fought for, for 15 months was for Isaac to be where he is today, running and jumping and playing, and yelling boo at me from the couch, and going to school and all those beautiful, wonderful things. But at the same token, now that we’ve been out of it for so long, I feel like the fog is lifting a little bit and I’m starting to kind of really think about and remember everything that happened and that he went through, that we went through as a family unit. And it’s just, I don’t know, it’s a really weird place because then too, as I mentioned, with scans coming up again in January, it’s like we haven’t had scans now for five months and so it’s easy to…we don’t ever forget about it, right?
But we are living our lives like we have two healthy kids because we do have two healthy kids. But then we get that reminder from Children’s in the mail or on the phone, scans are coming up, and it’s like we’re thrown right back into it again and all of those…for me anyway, all of those feelings of anxiety and, you know, oh my gosh, relapse, that word comes back into the forefront of my mind and it’s like…that’s hard to process. Because like, we’re…Me and Mr. Bill are talking so I can’t race right now. Here, play with this, here, go play. Thank you.
Thank you. We’ll race later.
Bill: I’ll race with you later, that’s a promise.
Kelly: And you could bring those to Papa too.
Child: What?
Kelly: You could bring those to Papa. I bet Papa would race too.
Bill: He’s just like. So like, it doesn’t take much for as far away as you can get it in the five months.
Kelly: It doesn’t take much.
Bill: As far away, wake up every day with two normal kids. As far away as you can get from it, it doesn’t take much to bring it all back.
Kelly: Exactly. And even, like, we were talking earlier, you know, he gets a bruise on his leg or he has a cough for four or five days. Which if Isaiah had a cough for four or five days, “Oh, you’re okay, you have a cold.” If Isaac gets a cough for four or five days, “Why isn’t your body fighting it? You know, your count’s low and if your count’s low, what does that mean? Is it something else?” And it’s just a really weird place to be, I guess, and yeah, it doesn’t take much at all. And I don’t think for the rest of my life, I mean, maybe it will get easier, I don’t know. We’re still pretty fresh out of it. But I feel like, in the back of my mind, there’s always gonna be that what if and, you know, what are the implications for the rest of his life? What is his life gonna look like? Yeah, it’s hard.
Bill: It’s beautiful. Because like, here you sit.
Kelly: Here we are. And he’s over there content as can be. Yeah, it’s…
Bill: Just hanging out, he’s just a kid.
Kelly: Yeah, he’s just…I love that, he’s just a kid. And he is and I love that, and that’s why I keep saying we are living our lives. And I need to remind myself of this when I start to worry and get anxious, but we have two healthy children. And we will raise him, both of them, to be productive, beautiful members of society because that’s what they will be. And so, that’s it, that’s great to say.
Bill: It’s beautiful, Kelly.
Kelly: It’s over? Yeah, well, it’s almost your naptime, Mister.
Bill: Dennis’s lesson to an older Isaac that you’re stronger than you think you are is what you learn from cancer. I’ve had cancer too, leukemia. It found me on the southern edge of the Sahara desert at age 20 and in my worst moment, someone told that same thing to me too. “You will find strength in you you never knew you had,” he said. Two hundred and sixty-seven blood transfusions later, he was right. The story of cancer, no matter how it ends, is written in hope, love, strength, and human kindness, four parts of all of us much stronger than cancer could ever hope to be. We are here now, Isaac and I, living proof that we are all strong enough. And that hope is never false, only more faithful.
John: Thanks, Bill. That’s an amazing story. And to think that a kid can be described as a strong-willed 4-year old, wow. I can’t wait to see what kind of person Isaac Williams grows up to be. Thanks. Well, that’s just about it for “Bloodworks 101,” a monthly podcast brought to you by your friends at Bloodworks Northwest. Thanks for listening. I’m John Yeager, until next time.
Child: Thank you.
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