Bobby and Monique Britton’s son, 5-year-old Behren Britton, was diagnosed with acute lymphoblastic leukemia in 2018 when he was just 2. Bobby, a teacher and an assistant varsity football coach at New Albany High School, and Monique Britton, an attorney for Abercrombie & Fitch, sat down with Healthy New Albany to share how Behren’s diagnosis changed their lives.
Healthy New Albany: When and how did you realize there was an issue with Behren’s health?
MB: We first noticed that he had a little bit of swelling in his neck and we kind of assumed that it was in his lymph nodes, a quick Google search told me that it was common in toddlers when they had colds and things like that. No reason for alarm. So we kind of let it go for a week or so until we noticed that it was getting worse, and it was actually one of his teachers at daycare that sent us a note and said, hey, I've noticed the swelling in Behren’s neck and am making sure you are aware. And it was in that moment for me to think, gosh, someone else is noticing so maybe we should look into this a little bit more.
Over the course of the next couple of weeks, we went through a variety of tests. But we just weren’t getting any answers. Then I could tell at a certain point with his pediatrician that the concern was increasing.
He went down to Nationwide (Children’s Hospital) and had a surgical biopsy. And then they decided to keep him overnight. At the time it was for excessive swelling and drainage. And then the next morning we got the official diagnosis.
HNA: What was his treatment like, and how did it impact your family?
BB: They started immediately. That next morning, when they called the room, they let us know the official diagnosis and that the plan was to begin treatment immediately. Basically we weren't leaving at that point, and I’ll never forget that. So they started an aggressive introduction to chemo that next day. So it started pretty quick.
MB: Less than 12 hours after diagnosis.
On the diagnosis, I remember being in the operating waiting room before he was getting ready to go in and get his first surgery. And, you know, it’s such a whirlwind. Like, we didn’t even have a full understanding of what this was and what this meant before he was under surgery for the port, and it was during the surgery when we first sat down with the oncologist to really understand his diagnosis. But I can remember being in the waiting room when we were getting ready to go back for the surgery, and there was an oncologist in there telling me what the treatment was going to look like and how this was going to be years of treatment, and then she made a comment about daycare. He wouldn't be able to go to daycare, and for some reason that was the moment when I realized this was very real. I remember thinking, and even saying out loud, “Wait, what do you mean? What do you mean he can't go to daycare?” She probably thought I was a little out of my mind thinking that since my son just got diagnosed with cancer, and why this would be a concern for me. But I think it was just like a moment realizing how serious this was, that life was really going to change for us.
A lot of times people have asked me along the way, like, how’s he doing? And it’s such a hard thing to answer. With leukemia, the treatment is really hard. You don't really get anything where it's all good news and you’ve met this milestone. You just cross your fingers that there's no relapse and you just wait for the days to tick by, because you know that you're on this path, which is about three and a half years of treatment, and then it's done, hopefully.
That first phase of treatment is 28 days, and it's a really critical period and it's really intense chemo because they’re trying to knock out all the leukemia cells and get him to a stage where they can’t detect leukemia cells anymore. What that means is that the immune system really tanks. So when we came home from the hospital, we were on lockdown and we were quarantined from the rest of the world. And it’s been interesting with COVID, back when we went into lockdown and everybody was going into quarantine, like, emotional. I think at least for me personally, I was like, this is fine.
BB: You kind of have to limit the exposure to yourself or to the kids or even who’s in your house. And you become very persistent with hand washing and the hand sanitizer. We started all that at least a year and a half to two years before COVID came around. So, you know, it was at various points throughout our house for the past several years.
MB: We were like, yup, we’re ready for this, because that’s the life we’ve been living for two years. Depending on how the COVID situation continues on, this could be our healthiest winter yet just because of the circumstances, which are, again, really unfortunate generally. But they may do Behren some favors.
HNA: How has the New Albany community supported your family?
MB: It’s been really, really amazing. I mean, Bobby and I said so many times, especially early on, I mean, the amount of support … (the) outpouring of love that we got from friends and the community and then also complete strangers, quite frankly, has been really amazing. There was a food train that was created by a good friend of ours. Bobby’s football coach, the head coach, we’re good friends with his wife (who) created it for us. For almost a year we had people bring us dinner twice a week, which was amazing, and a lot of those people we didn't know. I mean, they were just strangers that were friends of friends and it was like mind blowing and so heartwarming just to see people be so kind.
BB: For me personally, accepting help is difficult. I always want to pretend like I’m in total control and I've got this, but it was it was eye-opening to realize that, you know, accepting help is a part of this process, and in particular the food train, and it sounds it may not sound like a big deal, but it was. Some nights it was absolutely life-saving.
There were so many people that we knew would drop food off, so many people that we had no clue who they were. They had just heard the situation from a friend of theirs or just felt obligated to help, and it was inspiring to see how many people in the community just wanted to contribute something. People check in on me daily and want to know how Behren’s doing and it's something that has just been reassuring, you know, about kind of our humanity and who we are in this community as well as people want to know what they can do. And they don’t always know the right thing to say or the right thing to do, but the idea is that, you know, they're concerned enough to check in on him. They're concerned enough to ask tough. The outpouring of support was pretty amazing.
MB: Early on, Behren loved superheroes. It’s his thing. It’s still his thing. And so we kind of made this fun little logo called Super Behren, it’s kind of like a Superman symbol but with a B. And the students said to Bobby, hey, you know, we could re-use that logo to sell shirts.
But that just took off, and that became kind of a fun symbol for us because there are these red shirts with the blue logo, and I don't know what we expected to happen, but those shirts sold like wildfire and not just at the school.
And I see people all over town. I’ll go to CVS New Albany and I'll see somebody that I don't know in a super Behren shirt, and it’s honestly the most heartwarming thing. I don’t say anything, I kind of just smile to myself, but it’s really amazing. Those red shirts just took off.
BB: And you know, it's interesting because they know what the shirt means and they know what it's about and it's not just a shirt. They understand that there is, you know, a 5-year-old behind that symbol who has dealt with so much adversity in his five years that a lot of people will hopefully never have to deal with, but there's a level of compassion from these high school kids and community members that it's not just a shirt.
HNA: And how has your family changed throughout this experience?
MB: I feel like it can go one way or the other way. It can either tear you apart or really force you to come together, and I think I'm very fortunate, we feel very fortunate, that this has forced us to come together. I mean, we really just sort of hunkered down as a family and kind of took the approach of we’re going to get through this together. We have three kids. Our youngest son, who was 14 months when Behren was diagnosed, is now 3 and a half and is largely oblivious to anything that has ever happened, which is good. But our older son, who is 16, and this has been a couple of really tough years for while he's in high school, and that could be really hard for a teenager, and I think that has been very hard for him. But he deserves a lot of credit for being mature and kind of coming in and bonding as well. So I think that as a family it's really brought us together because we kind of realized that if we can get through this we can get through anything.
BB: You know, I would say equality is always a great part of our family. We are a divide and conquer family we always have been. Roles and norms don't really apply, it's just whoever can take care of it is the one who takes care of it. And I think that has been the approach we’ve taken, we try to balance out the hospital visits because they're challenging and emotionally unbalanced with work and everything else, and it’s hard to stop what you're doing and be at the hospital for two days. So we balance those out as best we can with our careers, making sure that the other kids are taken care of and they're getting enough from us as parents it has been key as well.
HNA: And how has the pandemic affected Behren’s treatment process? Any changes on that front?
BB: The team needed to collect data on how kids with acute lymphoblastic leukemia handled COVID. So it was a waiting game basically. When COVID hits we just had to basically revert back to the way we started when he was diagnosed, and that's limit exposure, shrink the circle, make sure you wash your hands, make sure we’re using hand sanitizer as much as possible, but it didn't really change the treatment, it just changed the day to day in the sense that we had to keep him home and his brother home until we have enough information or until the team felt strong enough that he can resume daycare, resume the preschool routine again and then do all that. Once we got the OK with that, we sent him back in late August. And the daycare that goes to, the preschool he goes to, put in all kinds of protocols for COVID and everything’s been great. You know, we haven’t had any issues since he’s gone back.
HNA: What does the future look like for your family and for Behren specifically?
BB: You know it's funny because that early stage where they just attacked the cancer cells, and it has such a hard impact on his body and his appearance, and it's extremely difficult to look back at those pictures and things that we took. And wedocumented with pictures all through the process. It's hard to look back because when you look at him now, this is an internal virus and is an internal condition because on the outside he looks like a regular 5-year-old boy, he acts like a regular 5-year-old boy. Sometimes you do forget kind of where you're at. He’s handling everything and has handled everything very well. He is resilient. He is tough. It has revealed his character as a young boy, that he really can get through so much. But from a development standpoint, he's right where he's supposed to be. If not, way ahead in some areas.
MB: I often think to myself, I have no idea who Behren would’ve been without all of this, but I can tell you who Behren is. And Behren is an emotionally mature, like, tuned-in tough kid. You know, it's weird because he's gone through this from 2 to 5 and so, largely, it does feel like he’s oblivious, but I think sometimes even I don’t give him enough credit that he knows he’s going through some tough stuff. And he has had to persevere and I think there has been a lot of toughness that has just been building up inside of him that I think he’ll probably carry with him forever.
HNA: And what’s his favorite superhero?
MB: Spider-Man. He’s been Spider-Man for every Halloween.
BB: He doesn’t even wait for Halloween. Several times he’s asked to wear his Spider-Man costume to the hospital for treatment. So he'll show up in full costume and everybody there knows it, and they’re just like, “Hey Behren,” and he’s walking around shooting webs at people.
His last treatment will be on Sept. 11, 2021, which will be a couple weeks into his kindergarten year. We have 10 schedule treatments left and we should hopefully be transitioning out of this phase of his life and our life and into the next phase ofearly fall next year. So that's kind of the light at the end of the tunnel for us, and hopefully between now and then it goes as smooth as possible.
Brandon Klein is the editor. Feedback welcome at bklein@cityscenemediagroup.com.
