Welcome to our parents talk. My name is Lianne Castelino. Our guest today are parents whose youngest child is in remission from cancer. Carlo Colaiacovo is a former NHL defenseman who spent almost 15 seasons playing for five NHL teams. He’s currently the co host of a morning radio show on TSN 1050. He and his wife, Gina are parents of two. And they join us today from their home in Oakville, Ontario. Thank you so much for being here.

Thanks for having us. Lianne. Yeah.

So I’d like to start by asking you what the last few months have been like, since June of 2022. Your son Leo has completed his chemotherapy treatments. So what has that time since been like for you and your family? You want to answer this together.

You know what, we’ve been so grateful that the last few months have just been so normal, so focused on, you know, kids being in school and the weather and just so just so typical for us. And we’ve been waiting a long time for that. So it’s, it’s been really nice to kind of come out of survival mode and get back to life as we kind of knew it. It’s, it’s been really normal for a couple years, even though Leo’s treatment went for so long. But once he hit maintenance and maintenance phase, things got really, they felt a lot more normal, because there was less visits to the hospital, less, you know, less pokes and less visits and less, you know, less everything. It just seemed to be more normal for us. So we’ve kind of been in that stage for a while, which has been nice. But since he finished treatment, not having to worry about giving medicine every night has been it’s been so so amazing.

Yeah, and just to you know, elaborate a little bit on why she said it’s been a celebration for us, because for three years, you know, and adding the pandemic to that there was a lot of tense moments, a lot of stress, a lot of uneasiness, you know, with us because the pandemic heightened things around him and his and his health. So, just being able to persevere through that and overcome all that with flying colors, and being able to just enjoy everything that life has to offer, not just for us, but for us as a family and him as a kid. Most importantly, I think that’s been the real excitement that we’ve been able to share these last couple months just being a kid again for him, you know, playing with his friends normally going into public places. participating in sports again, it’s it’s been a big celebration for us.

That’s so wonderful to hear. And it just sounds like all the little things right that that you know, so many of us take for granted. Let’s go back a little bit. Leo is five years old soon to be six. And he was diagnosed with acute lymphoblastic lymphoma when he was just two years old to type of blood cancer also called a ll. When you look back on that moment being given that diagnosis, what stays with you till today?

I think we both share the same answer to this. I think shock and devastation was the two big things that I think we both felt at the time because he didn’t really show any signs of being really sick at the time. I mean, he was just battling with what normal kids go through. And then, you know, God bless my wife and her motherly instincts. She was adamant to get more answers and took her took him to McMasters Children’s Hospital, which was a saving grace for us. And after they did more tests, we ended up finding out which is the news that not every parent wants to hear. But at the moment, at least, you know, we found out what we needed to hear at a time based on what he was dealing with. And to this day, when you think back it still comes as a shock and obviously a devastation.

Yeah, just I mean, just walking through the doors of a hospital for any parent is is scary. And you know, when I went there, I had just had a fever here fever a couple times that month, but he was also in daycare. So all kids are in daycare, get fevers and get sick and get colds and stuff. And a few things kind of lined up for us that day that one walking clinic that I had brought into a week earlier. wasn’t open until later that day. My family doctor back in Grimsby. Um was not available until like 530. And even then it was like a nurse practitioner so she wasn’t even available. And so on my way to the hospital in Oakville, my mom messaged me, she’s like, why not just go to McMaster Children’s Hospital and just try and get some answers, you know, just go where it’s for kids. So I went straight there. And it’s so weird because I can remember every detail up until his diagnosis up until the doctor first mentioned, like, it could be leukemia. Every single detail is as clear as day in my mind. But after that moment, it’s such a blur. I don’t know what time Carlo got there. I don’t know. You know, who we saw. I don’t remember people’s names. It was just such a crazy, unexpected, just dreadful day. It was just it was excruciating, actually. And it just I just remembered hard to digest really, because we just couldn’t believe what they were telling us. It really was because Leo was hardly ever sick. Like he had this cold. He had had like a cough maybe back just before Christmas that year. And so he was never sick. Plus, even at the time, even when he did have a fever. And even when he was feeling sick, he was still playing. So it was so hard for us to kind of be like, wait a second, you know, and I remember saying to the doctor is assists Lele coeliac Bo, like, check over the paperwork, check over the bloodwork, maybe it got mixed up like he’s looking at him, there’s no way he has cancer. So and then, you know, of course, they tell us that he needs a blood transfusion right away and just beside ourselves, it was first for the longest time we couldn’t even even still to this day, sometimes. You know, I can’t even say like Leo, when he had leukemia, it’s always like Leo, you know, when he went through what he went through, it’s so hard to just even say that word when you associate that with your little two year old.

You know, many people listening or watching this interview, are going to be able to empathize with what you’re saying, because six children every single day in Canada, current statistics show are in fact diagnosed with cancer. And there are more than 10,000 currently battling the disease who are children in this country. So when you think about recounting that story, and sort of having obviously lived it, what knowing what you know, now, and you wish you’d known then

everything about leukemia, you know, there was so much it was a huge steep learning curve. You know, I feel like when you’re a mom, you kind of think about, okay, fevers and coughs and runny noses, and you know, all these little things, nevermind that that can lead to a cancer diagnosis, and then all of a sudden, you know, nothing. And so trying to absorb everything, the doctors were telling us learning about different medications and their side effects and all this kind of thing. It just, it was so, so overwhelming, so overwhelming.

You get the diagnosis, you’re absolutely, you know, blown over by by this shock. But then you don’t really have a lot of time to absorb it before. Everything you just described learning about this disease and how it’s treated, all of these things start to happen. So how did you go about navigating? That? It’s, it’s, I mean, was it just a shift in mindset? Was it just this is what we need to do now. And that’s, that is just, you know, focusing on that part?

Well, I it took some time, you know, because we had to really digest everything. And you really found it hard to just communicate at the time because your heart is in your stomach. And I believe that, you know, with each day with more information that we were being given and more than we were finding out about his diagnosis. It really just took time for us to come to a realization and a settlement once we had all the information on what wife on what life was going to be for him and for us moving forward. And I mean, I don’t know, like, did you feel the same way? Like once we got all the information, it’s almost like we looked at each other. And we said, Okay, this is our new normal, we’re going to take it on, and we’re going to beat the crap out of it. And we’re going to do whatever we need to do to get Leo healthy again. And I must say, like, me and my wife have known each other a long time. And I always knew she had a great heart. And I always knew that she was going to be a great mother but just watching her embrace this and take it on upon her to know every little detail and take upon the responsibility that was needed on a day to day basis. To make sure my son was getting everything he needed and just our family was getting everything we needed is Why she’s the person that she is. And she’s an unbelievable person and unbelievable mother. And one day my son will learn to appreciate that because she really is the reason why he was able to get through this. Because as a two year old kid, and being latched on to his mom the way that he was, I mean, it’s hard to communicate with a two year old kid and just the way we, the way we accepted the responsibility. But the way she basically revolved her whole life around this new responsibility is something that I’m very grateful for. And we’re both very grateful for because we are we are we are where we are today because of her.

Thank you. I am, yeah, I definitely felt like I just kind of dropped everything that I know. Like, in the beginning, I remember looking down at my body, after the nurse had, had talked to us, and I walked out of the room with her. And I was just walking down the hall. And I remember like looking down at my body, like touching my legs being like, oh, my gosh, she was talking to me like this about my kid. And every time I had that kind of out of body nightmare experience, or feeling it just, like hit home all over again, what we were about to embark on, like what we were just about to start and just filled me with, like so much dread all over again. But thank you for the kind words you deserve.

She deserves it for sure. And I think in the beginning, it’s a lot of information to process. It’s a lot to absorb. But I think the way we approached it, and like we approached it completely differently from the first seven days, till the next seven days, because what within the next seven days, once we figured out what the plan was, we basically said, All right, this isn’t what we wanted. But this is what we were given. And we’re going to take it one day at a time. One day at a time, don’t focus on the finish line. Because hearing three, three and a half years of treatment, you’re thinking oh my god, this is forever. But really, when you try to make the focus, when you do make the focus, one day at a time, that’s all you really need to focus on is getting through each day, making it comfortable for everybody during that day and the next day, and just you know, making sure that with each day you’re making progress.

You know, the other part of the story that I think is so important to talk about is obviously you’re supporting your son who needs all of your attention and care, but also your other child, your older daughter at the same time as you’re processing everything that’s going on. So how did you go about doing that with your your daughter, Mia?

Yeah, Mia was only four years old, she was in junior kindergarten. And I’m so thankful my sister, it was on a Friday night that Leah was diagnosed and picked her up from school. My sister picked her up from school took her for the weekend for two nights sleepover. And she really had like no idea what was going on. That allowed us to kind of sit with the information, listen to doctors in the first couple of days. And then we were able to come home on a Sunday for a few hours gather things pack a bag, that kind of stuff. We didn’t know how long we’re going to be in the hospital. And so when we saw her, I think it kind of came over both of us like oh gosh, like, what are we even gonna say to her, she’s four years old, she doesn’t understand. We’ve never been more than, you know, I don’t think at that time, we had even been away for a night from our kids. So we sat her down, Carlo attempted to say something and then just started crying. And I said to her said, Mia, you know, we have this Leo spotted, blood is sick, we talked to the doctors, and they kind of gave us some age appropriate things to say. And he said, you know, Leo’s blood is sick. We’ve actually been at the hospital weekend, and we’ve been talking to doctors, and they’re gonna give him medicine to make him feel better. And I said, but we do have to go back to the hospital. And we have to be there for a few days. And you know, my mom was gonna stay with her. And she turned to us and she said, I will never forget, she said, I’m going to be brave, and I’m going to be the best big sister. And I think in that moment, both of our hearts like I mean grew exponentially, but also just kind of relaxed a bit like, oh my gosh, we’ve done such a good job with her for four years that she’s able to say something like that to come to that kind of conclusion when we, you know, spring this noose on her. We try to involve her as much as we can. After that she came to visit at the hospital almost every day or whenever it was, you know, okay for her to come on good days, that kind of thing. But during the For the pandemic, we were able to bring her to every clinic appointment. So I tried to involve her as much as I could, we had to also be there early, so we wouldn’t have been able to get her to school on time. So she just stayed with us for appointments, she played with Leo at the clinic, so that she felt involved and felt part of whatever he was going through too. And so at the same time, as he was getting attention, she was also getting some attention to I’d go in the room with the doctor and Lille and Nia would stay in play with my mom, my sister, my my dad, Carlo. So whoever was kind of there, we, we all I think we all took on the responsibility of making sure that me I never felt left out, the show always felt involved in even during the pandemic, I would meet my mom outside the hospital, she’d go with me to Tim Hortons or something, because we were only allowed to bring in one parent. So they’d go to Tim Hortons, and like, kill time at the park, or whatever they had to do, just so that she felt a part of it, too. So we tried to involve her as much as we could. And of course, she was so helpful with Lila home, you know, she would pause what they were doing and say, Okay, let’s go take your medicine. And she was just such a, she still is such an amazing big sister. Yeah. And I think that
was very refreshing to us, as a parent, knowing that we struggled with that scenario. In the beginning, we were like, how are we going to, you know, make me understand. And I think, once the conversation was had with her, and, you know, nothing really changed, it kind of went a lot smoother than we expected, it allowed us to sort of start coming to the realization of what our life was going to be like, and everybody was going to be involved in, you know, in their own roles, whatever that may have been. And I think the one thing that we are extremely blessed for is having great family around us, because, honestly, like
I’ve done it without any of them. And I struggled with that during the pandemic, I I would still take Leo, obviously, for his clinic appointments and seeing new families there was so hard, I had a mom and other mom reach out to me and maybe like, it was the first month for sure, maybe their third or fourth time at clinic and she saw Leo was struggling, I was holding him he had gained some weight. So it was really heavy at the time. And, you know, all she did was offer me a copy and her phone number. And I thought How special is that this mom is two years into her journey still, you know, reaching out to other new moms. And I was so inspired by that, that I started doing the same when I saw new moms, especially during the pandemic. Before the pandemic we had so many people come and visit us in the hospital, they got to see Leo, they got to see how he’s doing. Oh my gosh, the hugs the human touch. You know, it’s so underrated I think. And then in the pandemic hearing that, you know, moms couldn’t even deal with their, you know, husbands and wives could even be together grandparents could have, how are these people surviving? So I at least offered my phone number. I don’t know if it really helped. I hope it did, you know, just to at least LIS lend a listening ear and other familiar experience that someone else could relate to. But yeah, without family? Gosh, I don’t know where it’d be. Yeah.

It really does sound like you were both very open to being supported. And not everybody has the luxury of that support, right? There’s going to be people who go through this bottle by themselves. And even if they have support, they might not be open to receiving it because they’re processing and going through their own, you know, way of managing it. So what kind of advice could you potentially offer other parents in a similar situation who get a diagnosis of this kind that is so devastating, in order to be able to sort of manage those critical first moments and days and weeks and months after that diagnosis in order to sort of be in a place of strength somehow, as they move forward along this journey?

I think we both have our own advice to give people so I’ll go first on this one. I think in our situation, the difficulty in the beginning when we first found out is we wanted to let family know but it was hard because my twin brother was not around. He was on vacation and we didn’t want work to get back to him or get to him while he was on vacation because we didn’t want to create a sense of panic. So that also being on the radio, we had family calling like why isn’t Carlo? What’s going on there. So that anything
so a good week it was holding information within people close to us. And that was the toughest part because I believe we felt a lot better when we were able to share our story. Like once we got all the information and we started talking about it I think it helped us start the, the process of rehabbing and the process of healing. Because we knew what we were dealing with, we knew that he had a positive diagnosis. And we felt like the more we shared, the stronger we became, because our support unit or support team around, this just grew even stronger. And, you know, when we started to share our stories, now more people are reaching out and sharing some of their own personal experiences and some of the positive outcomes that they come and some of the bought the battles that they had to deal with. So it kind of helped us prepare a little bit more for what we didn’t know what we were going to deal with. So the advice I can give, and I’m not sure if she feels the same way is if you feel comfortable, share your story, share your story, because, you know, there’s there’s like, like you mentioned before, there’s so many people out there that either have been through it or know somebody that’s been through it, and talking and sharing advice or certain experience can be really healing. And the other advice that we had for each other was nothing else in the world matters. You know, what matters is the health of our son and making sure he gets everything he needs on a daily basis to be happy to be comfortable. Because the happier he was, the more comfortable he was, the more happy and more comfortable that we were. And so that that helped us get through everyday to even though it was challenging, and a lot of it was challenging for my wife, because she took on the responsibility of the everyday comforting everyday medications, the talking to the doctors and, and that’s it, she and she deserves an award for that. And she really does. But we were we were only allowed to do all this because we allowed it to happen. We allow people to share our story, we allow people to come into our family. And, you know, we took a day by day approach with it. And we said nothing was gonna get in our way. So that’s, that’s the advice I can give people is take one day at a time, and only focus on the things you need to do on a daily basis to make everybody around you comfortable.
Yeah, and I definitely agree with that advice. I think in our case, too, though, is that we totally just let Leo lead the way. And we’re also so grateful. I know that this is not everybody’s experience. We didn’t really have a lot of setbacks, and there weren’t any real complications with Leo’s diagnosis or treatment. So he did like laugh every day and smile every day and play every day. So for us that I mean, how do you, I guess my advice would be to kind of let your child lead the way and on good days, you embrace those good times, on harder days, you know, sit, drop everything, sit with your child. And I feel like that kind of goes through like any illness, you know, it doesn’t have to be just because your kid has cancer. But I think that’s important for us as parents that we have to remember we’re raising these little humans, and when they come to times that are scary, or, you know, uncertain or going through things that aren’t their friends aren’t going through, we have to kind of lead the way. In our case, though, Leon will lead the way for us. You know, so I feel like he deserves the award. If anyone’s gonna get an award, he kind of feel like it, he kind of made that part easy for us, you know, the, to share what was going on, we were able to share lots of happy things. Or maybe I just turned a blind eye I don’t know even
to this day, like he’s completed his treatment. He’s thriving in life. And I still get people asking me, how’s your son doing? How’s your son doing? And I feel ecstatic as a parent to say that he’s doing amazing, right. And, you know, we’re, we feel like, We’re blessed in that way. Because we did have a positive outcome with him. But, you know, in any cases, even though you are given, you know, a positive outlook in the beginning, you’re not sure what type of challenges you’re going to be dealt with throughout the path. So she said at best, let Him lead the way.
It sounds like each of your children really did empower both of their parents, right? You talk about Mia and how she reacted when you first told her and your son going through this and you know, smiling and all those things. It’s really it’s really powerful experience, I’m sure for both of you. Let me ask you, you know, you talk about more than three years of chemotherapy treatments, more than 1000 of those treatments. In all, I mean that that’s really intimidating when you listen to it. I know Carlo, you alluded to that earlier talking about when you look at the whole entirety of it versus a day at a time. Can you paint a picture for us of what like a typical day or a typical week look like for your family? At the height of Leo’s treatment?

I’ll let her speak. So I don’t feel
like there was any I don’t think we could have considered any day. Like typical everyday was so different. In the first eight months, there were lots of visits to McMaster Children’s Hospital, there were different stages, the first 28 days, he was on a steroid, that by week two, I think by the time we got home after two weeks, he was so miserable. And he was, you know, putting on weight and we were making like bacon and eggs and sausages at like three in the morning a few times, I could get
up at three o’clock in the morning, one time make them a plate of pasta. Just so what do you want banding food? But you know, that’s what the drug does, right?
Yeah. And then, you know, the second month was a different medication, the third month, third, third, and fourth together were different medications. So in all, like there was there was just there, it was just so different. We had to keep a very detailed calendar of what medications he needed. And when and some were just for five days, and some were three times a day. And it was so confusing, but we just tried to stay as organized as possible. Thank goodness for our awesome nurse Joanne at McMaster, who really just kind of took us under her wing, and she made sure that we stayed on track. And yeah, we there’s, there’s so many medications, so many appointments. But once we hit maintenance, things kind of settled down after that. And like I said, in the last two years, but they were a bit more normal and manageable.
Yeah. And I think one of the great traits that my wife has is how organized she is when it comes to perfection too. And every month when we were given a new schedule, she would spend hours coming home and just creating her own schedule of stuff she needed to do, because he needed what medication twice a day,
twice a day, yes, um, three times every once a week, and it was
and it was all through an NG tube, right. So it was a liquid that she had to learn how to use a syringe wear gloves, take certain measurements, and people would ask all the time, you know, what’s you he had to work almost two years wearing an NG tube. And they would ask like, is that for feeding and luckily for us, he never ever once stopped eating. And you can just imagine the challenges of a kid who’s getting chemo young kid not eating right now you’re dealing with different challenges to the NG tube was strictly for medication. And it’s just because so that we don’t have we wouldn’t have to fight them every day to give them the medication because that was a challenge to as a two year old kid, you know, try to give them a medication that doesn’t taste well and that he doesn’t like right but the NG tube created a sense of sort of calm for us knowing that, okay, we don’t have to fight him with it, we can just or she doesn’t have to fight with it. And she can just give it to him when he needs to get it which was every day every day for three years, he needed a dose of chemo and and and once the tube was removed, we were able to get a pill and go pill form. And it was there was a lot of bribing and a lot of you know conversation around the benefit, trying to get him to move away from the two because we wanted like, the thing about him being a kid is that he’s very playful with a lot of other kids him wearing a tube, there’s always you know, the concern of it popping out and then having to go to another hospital visit and stuff like that, where the pill it’s just, you know, gets orally and he gets to take it and I felt like what that was the final hurdle for us in his chemo stages once he was able to start going pill for it was like he was a kid again, you and like a full kid again. And you would never know. And I think the other difficulty for us with him was just the changes we saw in him from day one to day 365 In the first year. Because you know, he’s losing his hair, he’s putting on weight, you’re seeing the physical changes. That’s hard. That’s hard as a parent to see your kid go through that. But you know, you stay on track, you stay prepared, you stay on schedule, like my wife was with him with his medications and the it takes care of itself. And ultimately, through time through effort through sacrifice. You find a way to get through it it’s hard to believe when we look back and you say to yourself holy cow I can’t believe we did that for three years and you know, you never want to say the pandemic was a blessing but for us it really was in the sense that we didn’t have to make an excuse not to go anyplace is because obviously the risk of his with his health. We limited ourselves from any you know, public events, any you know, family outings, because we were just primarily focused on making sure that he was in the right health situation every time.

What would you say that each of you learned about each other as parents as you were coping on this journey.

I mean, I’ll start i i learned how strong my wife is. is, and, you know, I can’t imagine any parent, let alone a mother with two young kids having to go through the struggles that, you know, she had to go through not just physically but emotionally. I mean, you talked about having my daughter, our daughter, Mia, you know, see my wife attend to my daughter, or my son 24/7 That can be hard on a young child, and the strength that she showed, knowing that she was going to take this full on, and she was going to make sure that he beat this thing. And, you know, we also, you know, there’s times in there that are very stressful, but I think it helped make us stronger as a couple, because we’re able to overcome a lot of struggles in that, you know, in that situation. And, you know, it’s, it’s, it’s really hard to describe, but honestly, I don’t think if we had each other, we wouldn’t be able to go through it.
Yeah, I, it was, it was so hard to like, first, say the words to Carlo, like, you need to come to the hospital. Oh my gosh, like just thinking back how I didn’t even know what to say. And then when I saw him come in, and you know, tears in his eyes, of course, in that moment, you kind of like, you just have to lean on each other. And you really don’t have a choice of, you know, what, what the next step is, and so you go through it together, and you learn together, and you just kind of hope for the best, but at the same time, like really just lean on each other, and know that the other person’s got your back, and, you know, go through it together.
And I know, like I didn’t put nearly the work in that she did on a daily basis, you know, going to the hospitals, seeing him do his treatments, spending the time there doing the treatments. I wish I could have been there, you know, right beside her every time doing that. But you know, with her blessing, I was able to go back to work. And knowing that everything I was doing, I was doing and supporting my family. So what I just tried to focus on otherwise, I was just doing the things that she needed on a daily basis, you know, meals and groceries and just some of the other things that would just take sort of the load off for her because I just felt I felt helpless at the time, you know, helpless knowing that, you know, I wasn’t there sharing the same struggles that she would face and, and deal with, you know, emotionally because she was there hands on. But it didn’t feel like it didn’t mean I wasn’t feeling it, I was definitely feeling it just in a different way that she was. And I think ultimately, that’s what we’ll learn to appreciate for each other and from each other. And all this and I want to believe that it has made us stronger as a couple. Knowing that, you know, no kid should go through cancer. And it’s not fair to any of them. But unfortunately, we live in a world where like you’d mentioned, it does happen. And as a suggestion to parents is just be as strong as you possibly can for each other.
I really am so grateful that Karla was able to work during all of that and support our family. And I feel like we didn’t miss a beat outside of Leo’s diagnosis. Like we really didn’t miss a beat, we were still able to attend, you know, different events for kids. And I think it was important to him to continue working also because in you know, a parent’s mind, whatever, you can keep normal, you keep normal. And working for Carlo, he was a new job at the time, we’re about six months in or seven months into his new job on the radio. And even I mean, it gave us something to listen to. Also, it was it was nice to know that at least one of us was continuing to be normal to live a normal life. And at the same time, I’m just so grateful that we didn’t, you know, I know there’s families out there that you know, are forced to leave their jobs or their jobs aren’t as forgiving and giving time off. I’m very grateful that I was off from my job as a teacher, and that Karla was able to continue to work for us and do what he loves. Because we also love watching him do stuff he loves. So that was really important to us too. And so I’m really thankful that he continued to do that. And he excelled at his job. And, you know, we’re, we’re still here, we’re still doing the same job. And we’re at least you know, back to kind of our normal lives to

Gina and Carlo Colaiacovo hank you so much for taking the time to share this intensely personal journey with us today.

Well, thanks for allowing us the opportunity to share it. Thank you.

Thank you