Talk About Cancer

Don't have to be superman

• Episode 38

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Akili reflected on the disruptions he faced when his son Kaine was diagnosed with leukemia more than two years ago and the growth he had to go through to survive this “good” bad diagnosis.

Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

I still don’t know how Akili manages to do everything he has to do from being a father of six and juggling multiple jobs on top of Kaine’s medical appointments! He’s probably one of those people who only sleeps four hours a night. Even then, as Akili said, it takes a village to get through an experience like this, and I’m so glad he got to a place where he felt comfortable with asking for help and receiving help. 

I also loved Akili’s point about performing random acts of kindness and how it’s what makes our communities stronger. It’s a really important message for us to remember at a time when we are going through so much trauma and loss across so many communities. 

On a more positive note, Kaine got his port removed one month early and is on track to finish chemo by early December!

SPEAKER_01:

Hey everybody, this is Serena, your host for the Talk About Cancer Podcast, where I talk to cancer patients, survivors, and caregivers about their experiences dealing with cancer. We're all given treatment plans when cancer shows up in our lives, but no one gives us plans for navigating the hard conversations we need to have and the relationship challenges that will inevitably come up. This podcast is meant to help fill that gap for those dealing with cancer. I think of it as an on-demand audio support group where listeners can hear about others' experiences managing similar problems, but most importantly, get insights about how our loved ones are feeling on this journey, none of us signed up for, and better understand where they may be needing support. In today's episode, Achilles reflects on the disruptions he faced when his son Kane was diagnosed with leukemia more than two years ago, and the growth he had to go through to survive those good-bad diagnoses. Let's dive into his story now, and I will check back in with you at the end.

SPEAKER_00:

Currently a caregiver. I own my own business doing caregiving. And I just love working with kids. I've done that for the last seven or eight years. Um a father of six, got four girls, two boys. So stay completely busy. You know, it's even worse now that my second oldest and my third oldest are in sports, so that makes weekends very fun for myself. Sometimes I end up driving to different sporting events like halfway through just to make it to both.

SPEAKER_01:

So true dedication.

SPEAKER_00:

Yeah, it's a full-time job. They keep me on my toes. You know, people ask me how I stay out of trouble. I was like, have six kids. You won't get into no trouble. You don't have time for trouble. You have time for work and then the million things that they have you doing.

SPEAKER_01:

Mm-hmm. Did you always know that you wanted to be in kind of the caregiving field?

SPEAKER_00:

No, I didn't. I was I got a job working for my sister. I was basically her nanny. And I did that for like two years out of high school, and then I got an offered a management position at like a Dollar General, and I did that for a couple years, and then I was cleaning gyms for a while, and I was like, this is not fun. I did that for like probably three years. I was just like, all right, it's time for me to figure out. And then I got an email from a guy who I played basketball with. He was the unit director at the Boys and Girls Club, and he offered me a job, and I branched out since then and got a degree and all types of things into all types of certifications for working with kids, and I was just like, this is my lane now. I'm being a positive male role model. Because I grew up without my dad. He was locked up for I think until I was 25. So I know how kids without fathers feel. So I figured if I can be a father figure to as many kids as I can, including the best one I can, be for my own kids, maybe the world would be a little better place.

SPEAKER_01:

That's amazing. And it's so awesome for you to say that. And it's so true. The male role model is so needed in some communities. So thank you. I'm familiar with the Boys and Girls Club. I did a marior right after college, and I was placed in with I was in a school district here in California running after-school programs. So Boys and Girls Club was a big partner of ours, and they offer such a wonderful space for kids to do things, be active, and get support, and just really stay out of trouble and to have a great male role model to connect with there is priceless, really, for so many of the kids.

SPEAKER_00:

I think a head start we had probably when I worked there, there was 150 employees in throughout the schools, and I was the only male. I was probably one of, if not the tallest, one of the tallest. So I stuck out sore thumb, but I was also the only male in the trainings.

SPEAKER_01:

Well, thank you for sharing that background. Um, you know, I found you on Instagram. You've been posting about Kane's story for a little bit. So can you tell us how that all started?

SPEAKER_00:

I remember it was a Friday, and it was probably like three o'clock in the afternoon, and I had the day off from Kids. It was the first Friday in September, which at the Boys and Girls Club is always professional development. And head started just so happened to have training that same day. So I was in training all day. I like literally got out of training early, only to go pick up my daughter to take her to daycare, so I can go to more training. And I remember thinking like, I do not want to go sit in more training. Like, I'm just like, I'm trained out. Uh after eight hours of training, I was like- Especially on a Friday, too. Yeah, I was like, the last thing I want to do is sit in four more hours of training. I don't and Kane's mother texted me a picture of him in the hospital. And I was just thinking, like, oh, he probably had something, it's probably just a fever or something, not nothing big to be worried about. But I was like, that's my cue. I'm out, I'm out of training. I'm about to text my boss, like, myself to the hospital, I gotta go. And I just remember from the time that I got the text, I dropped my daughter off and I texted her again. It went from just a fever to possibly cancer in like 20 minutes. It was like a 30-minute drive to the hospital from where my daughter's daycare was. So I I'm just like trying to get down there as fast as I can of speed. And by the time I get there, they're already in transition to sending them to Milwaukee, which is where he goes for his treatments currently. So we're about to have to take an ambulance down to Milwaukee so they can monitor the whole way there. And his mom drove my car. I rode an ambulance with him, and I just remember it was the longest ride of my life because I'm just like, and I've driven from Memphis, Tennessee to Racine back and forth many a times, but it was way longer than that. And I think it was like probably an hour after his mom had stepped out to get some fresh air. And I remember just three doctors walking in, and you could just see it over their faces. Like, I mean, you can deliver good news a bunch of ways, but you can only deliver bad news one way. You can't sugarcoat bad news. And I just like knew he had cancer. And they confirmed my thoughts, and I just remember just like saying, okay, okay, thank you. And then like I didn't process it until after they left, and I'm just like, I was just like, my whole world just crushed because I didn't know much about cancer. I didn't know like success rates. To me, it felt like a death sentence. I was like, oh, I'm about to have to bury my three-year-old. And I just was like, I'm not ready for that. I knew I wasn't ready for that.

SPEAKER_01:

What type of cancer does Kane have?

SPEAKER_00:

He has ALL, I think it's acute lymbastic leukemia.

SPEAKER_01:

Mm-hmm. So after you heard the news and and you explained you were obviously in shock, you were not ready for it, all of it, any of it.

SPEAKER_02:

Yeah.

SPEAKER_01:

What did you and your um Kane's mom talk about? And I don't I don't know like your relationship status. How should I refer to it?

SPEAKER_00:

Oh, yes, Kane. We were we were never together. We just we're just GMs of a team. Basically, we're co-owners, I guess, at this point.

SPEAKER_01:

Okay. So yeah, so I guess my question is how did the two of you come together about next steps? Did you have disagreements? And what came up for the two of you, I guess, is my question.

SPEAKER_00:

I think it was just like because we never have been together. So it was just like we never had to like deal with each other long periods of time because we were like having birthday celebrations separate, everything was like separate. We would just literally talk when we were switching cane. So it was just like we obviously know this is not gonna be an overnight thing, like they're not about to send us home, we're about to have to figure out everything. And I think the toughest thing was just like learning like how to deal with each other when one's not happier. Like, I think the toughest thing for us was just like coming together to find a middle ground. So we were we were united on the front, okay, we know he has to get these treatments, like, so let's just try to get everything going as soon as we can, so then we shorten up the time that he has to be doing chemo and taking these trips.

SPEAKER_01:

And how has that been going for the two of you?

SPEAKER_00:

It started off Rocky, it was a roller coaster at first. You know, now it's more so it's just communicating because, you know, they just now started allowing both parents back at the hospital, but we had gotten so used to one that we're just only one of us is going down there with them, and then we just fill each other in. So it's mostly just about just staying in constant communication, learning to be essentially best friends with somebody that's not a best friend.

SPEAKER_01:

Yeah, but you gotta be in lockstep, basically.

SPEAKER_00:

It's especially like because I mean, if he misses a medicine, then you know, we have to communicate, like, okay, you gotta make up this dose, so then we stay on task and his numbers stay good.

SPEAKER_01:

Do you talk to him about what his experience has been having had childhood cancer? Does he share that with you?

SPEAKER_00:

I do. I ask him questions all the time, like, how are you feeling? Like, I know he remembers the pain because every time we go down to Milwaukee, instantly as soon as he saw the hospital, because I mean it's one of the biggest buildings in that area, and he would just like start immediately crying, saying they're going to poke me. And so he knows, and I know he's like in his head, it triggers like, oh, that's where I get poked at.

SPEAKER_02:

Mm-hmm.

SPEAKER_00:

Like it got so bad to like where they give us like lidocaine to like put over his pork, and we stopped using lidocaine because then like it made the whole hour and a half to two hour trip longer than two hours because he's crying in the back seat.

SPEAKER_01:

Is lidocaine, that's like a topical.

SPEAKER_00:

Yeah, but then it's just numbing. Yeah, it's just the numbing cream. But then he would know, like, oh, they're about to poke me right there. So it would trigger him before it was even necessary. So we just stopped doing it, and we were just like, listen, we're gonna fight one battle and one battle only as opposed to fighting two separate battles that early in the morning. Because like sometimes the surgery or where he got his spinal tap, and in chemo, they would schedule it to be like eight o'clock in the morning, which is like a six o'clock a.m. wake up for us to drive down to Milwaukee, and it's even longer because he can't eat before. So we would get there like probably seven, and sometimes the surgery wasn't isn't until like nine. It's a long time for a kid not to get breakfast or snack or drink anything. So it makes for a cranky kid.

SPEAKER_01:

So for sure. I mean, it makes for cranky adults too.

SPEAKER_00:

Yeah, it definitely does. I know. We me for the most part, I I fasted with them. And so I just did my best to be like, if I did get too hungry, I I would try to sneak a snack or something, eat it quietly.

SPEAKER_01:

Yeah, that's so hard. You know, as I explained before, I don't have children. And so the closest, I think, experience I have is being a caregiver for my dad. And so I can only imagine how hard that is for parents who have to watch their children suffer through treatments and being afraid, and as you said, hungry and cranky and having to get up early in the morning. How did you deal with that?

SPEAKER_00:

I think for me, I've always been a compartmentalizer with my feelings. So it was like it made it unfortunately easier for me than probably most people because I never like talked about my feelings and stuff when I was younger, or even as I got older, I was just like, I'll worry about it when I need to worry about it. Right now I gotta do this, that, and the third. So it was some moments I would be, you couldn't tell that I was going through it, and then like I'll get alone in my car and I'd just have a whole little cry fest or breakdown, however you wanna call it.

SPEAKER_01:

And then ugly cry sometimes.

SPEAKER_00:

Yeah, it was definitely my my car seen some ugly cries. I can testify to that.

SPEAKER_01:

Yeah, I know what you mean. It's that kind of need to be strong for the other person in the moment. So I remember the feeling of pushing through a really difficult moment. It was like breaking me on the inside, but I'm like, no, I gotta push it away and just get through what I'm doing right now. And and then later when I'm alone and the person that I'm worried about isn't in front of me anymore, then I will let it go. Ugly cry, mostly in showers for me.

SPEAKER_00:

Oh, I think 1000% I agree because like it'll be times where like we would have to hold him while he's getting his portax, and we had I I had to hold him like tight because if he touched his port or something, they had to start all over and clean it. And I was like, you don't want to do this twice, buddy. I know you're fighting, like he's fighting with everything that he has. He'll be like calling out, Dad, help, they're attacking me, they're attacking me. I need you to help me. And it's like, you know, as a father, you want to protect your children. And, you know, even as in your case, you know, that's this is your father, he's supposed to always be your protector, and now you're having to be his protector. And I'm sure it mirrors the same helplessness feelings that there's literally nothing I can do besides try to get you through this moment as fast as I can.

SPEAKER_01:

Yeah, and not that it's a competition, but I think just hearing you describe that, trying to calm him down to do something that you know is supposed to help him, but you know, he's just scared of it. That's a thousand percent harder. Because I mean, at least with my dad, it's like he's an adult, he already knows. I mean, not that he's not scared, but you know, I'm not having to physically calm him down for certain procedures. So that's really, really hard. And you are such a caregiver. How do you take care of yourself?

SPEAKER_00:

I'll listen to like music and I'll just like talk it out to myself, like inside. I used to work like probably eight or nine hours just delivering stuff all day. So I would just have my AirPods in and just I'm constantly trying to work out emotions and talk about things to myself. What can I do? How can I do? And then like when people ask, I'm gonna give you the real answer. So then you know, like I'm not just bottling everything up. But it took me a while to get there. I think it was probably like a year in where I got to that point. Like, when people ask, I'm gonna give you the honest truth as opposed to no, I'm okay. If I'm not okay that day, I'm gonna let you know I'm not okay that day.

SPEAKER_01:

Mm-hmm. What do you think helped you get to that change?

SPEAKER_00:

I think that it was just getting inside of like the cancer community and seeing other people's stories and talking to other parents and realizing that it's a big community. It's a big unfortunate community because I'd rather get to know these people under different circumstances, but that's not how life works. And I think like it just taught me like seeing other kids just pass away, and then I'm like, how is that parent supposed to rebound? It was like if they have to rebound, then I have to rebound even faster because I just felt like my son, even though it spin a roller coaster, he got a good, bad diagnosis. Like they told us that it was gonna be low risk right away, it was just gonna be getting to the end of the tunnel. So it's just like me fully understanding, like trying to see a silver lining in a dark room.

SPEAKER_01:

Yeah. How has your experience with Kane impacted the work that you do with children?

SPEAKER_00:

At first, I just remember that first week, because I had two different bosses at the time. They were both like, take as much time as you need and come back. But for me, I was like, I need to get back as soon as I can because I know sitting at home walling, that's not how I do things. I just want to try to keep it normal. I was going to work both jobs. I was wearing masks before it was cool. Like I went to Walmart and I ordered, I probably ordered like 300 masks. I got them dirt cheap. Dirt cheap compared to like before the pandemic, I was being like, like there's pictures that I have like of me. And I remember people looking at me like weird, because I would see parents and stuff, they would be like, why is he working if he got a mask? Like, I'm not working because I have something. I don't want to catch something. Because if you work with kids before, or if you had little kids, they will completely cough in your face while telling a story and cough and keep telling that story. They don't even cover their mouth. So, you know, I didn't know what it breathed because I mean, I think he got calm and cold once and had sent us to the hospital for nine days. Just the cold. I was just like, I don't want that.

SPEAKER_01:

Have you talked to your other kids about what's going on with Kane?

SPEAKER_00:

I would talk to my older daughters because the younger two besides Kane wouldn't understand at the time. But I told my older girls, like, hey, this is what's happening, and trying to put it as best I can for four or five-year-olds. And but I told them, like, you might not see me as much as you seen me in the past, because I might be in Milwaukee.

SPEAKER_01:

Did she ask you questions?

SPEAKER_00:

Yeah, she did, and I tried to answer them as best as I could. You know, I think it was more so the fear of them losing a brother. It they were more so scared, like, is Kane gonna die? And as a parent, as a person, you don't want a kid to ask, is another kid going to die? I think everybody can just agree on.

SPEAKER_01:

Yeah. Did Kane ask you that question?

SPEAKER_00:

No, I don't think he understood at the time. I think now he knows, but now that he's more understanding of his cancer, he knows that he's like at the end of the road as opposed to like when times got scary. Like there was a moment where like his immune system was just it dropped dangerously low and it would just continue to fall, and they didn't know what was happening, and we obviously didn't know because they didn't know, and we were just praying and hoping by some miracle. It one morning just finally started to pick up and it kept rising until we were able to go home, but they still don't know what happened or what it was. It was just them trying scary, trying a bunch of antibiotics and everything, and I just remember like, well, this is it. And I'm trying to like prepare myself to tell people for the second time bad news.

SPEAKER_01:

So, where is he in terms of treatment today?

SPEAKER_00:

He is in maintenance next month. He'll get his port out, and then December will be his last dose of chemo, December 5th. So he is currently at the end of the trail.

SPEAKER_01:

That's really exciting.

SPEAKER_00:

Yes, it is.

SPEAKER_01:

Yes, fingers crossed.

SPEAKER_00:

Yes, I know. We all numbers have been good for the last couple of months. At the beginning of the year, his pork got infected. It sent us back into the hospital for eight days, and it just was like it was a humble experience, I can tell you. I can tell you I needed it because like I got so used to just like him doing so good, and so it put my defenses down. And then like that happened, I'm like, oh yeah, we're still fighting this battle. Let me stay on top of my game, let me make sure I'm doing everything that I can to prevent these long hospital stays because food's not that great.

SPEAKER_01:

Mm-hmm. And so it's been three years, is it?

SPEAKER_00:

Yeah, a little over two.

SPEAKER_01:

How has this experience changed you?

SPEAKER_00:

I think it's opened my eyes up to just like trying not to get so upset about little things and looking at a bigger picture. And just trying to enjoy, like when I do get moments to hang out with my kids and do stuff, just enjoying the moment. Not even like taking pictures or video, just living the moment and making sure that I'm experiencing the moment as opposed to just like, oh, let's just get out so you guys can stop complaining about something.

SPEAKER_01:

Yeah, that's so true. Sometimes we're so busy like trying to capture the moment. You like don't really even live it.

SPEAKER_00:

Yeah, I mean, it is good to capture moments so you can relive them, but sometimes when you're capturing, you you actually missing the moment.

SPEAKER_01:

Totally. And what kind of support do you have today for yourself? Because it's it's an ongoing thing, right? Even when he gets his last round of chemo, the caregiver journey continues and there's so much trauma that comes out of an experience like this. So beyond working out your emotions with the deliveries, what other types of support have you been getting?

SPEAKER_00:

I'm yet to see a therapist or something, but I you have the availability, I would recommend it. I just know that I've just been so busy because I am still a father of six, and you know, they live in three different households, so it's just busy. But, you know, I can give props to my kids, mothers, because they've just been so helpful. You know, at the beginning, I just wasn't I couldn't be there. So they just helped so much by shouldering things that they hadn't had to shoulder, you know. Like I said, I grew up without a father, so I always wanted to make sure like I'm not making excuses. I'm gonna do everything that I can, but during that moment I just wasn't able to do things.

SPEAKER_01:

Was it hard for you to ask for help?

SPEAKER_00:

Yeah, extremely, extremely, extremely hard. I think it was one of the most hardest parts about it at the beginning, outside of obviously getting the diagnosis. But I mean, I I can tell you this it takes something like this for you to figure out who's really in your corner and who really supporting you. Because I had people that stepped up and helped me out that, you know, I play a lot of basketball around the area. So like I had people that I just played basketball with a couple times that donated money and gas cars, you know. And I had people that I was close to, but we didn't talk as often. And they stepped up even more and will be forever thankful, especially to my guy Dennis. I gotta give him a little shout out. He was he's been there since day one, and you know, we were close, but we wouldn't we weren't as close as we are to this day. And now, you know, like I even showed up to his son's football game when he couldn't be there, recorded most of it so he could see it.

SPEAKER_01:

And what kind of help did people offer you?

SPEAKER_00:

I think just like help with my other kids, and like if they needed something, you know, like they were dropping off gas cards and grocery gift cards and stuff like that, which, you know, at the beginning, we were going down twice a week. Three-hour drive, there and back, it's a lot of gas. On top of like the days that I wasn't going, I was still working two separate jobs in between that and still trying to be a father and drive around. And even if it's like 30 minutes of seeing my kid still trying to do that and then still running home at the house. So it was tough at the beginning. I can tell you that there's no easier way to put that, but yeah, you know, quite the juggling act. Never went to clown school, but you know.

SPEAKER_01:

What do you think ultimately made you get over that feeling of not being able to ask for help?

SPEAKER_00:

I think me just coming to terms with this isn't a comic book. You don't have to be Superman. You can ask for help, you can accept help, you can do these things because if the shoe is on the other foot, you've done that, you've been that. I just remember like me thinking back to this time where I was getting my hair cut and it was a cold night, and I came outside back to my car, and it just so happened to be across the street from the main Boys and Girls Club where I played at as a kid. And I remember a kid just waiting outside for his mom to look, it was a cold night. He just had shorts on, and I just popped my trunk open. I gave him a hoodie. I didn't ask him his name, didn't say anything besides, here man, take this. I like everything's good. He was like, Yeah, my mom's on her way. And then, like, two days later, somebody sent me a story about it because I posted a story about me doing that for the kid. I was like, I don't know the kid's name. And then like his mom posted a story about somebody giving her son a jacket because she was running behind because she's a single mom, and another kid had karate lessons, and she didn't get to the boys and girls club in time. So she was just thankful. And I just realized if you can do that for somebody, somebody can do that for you, and you can keep doing it for somebody, and we can all make the world a better place by continuing to do something like that.

SPEAKER_01:

Yeah, I love that story. Thank you for sharing. It's the community that I think we used to have more, and I feel like got lost over time. You know, it's like the trust that we have and the willingness to extend a hand sometimes just isn't there in our modern times. But but yeah, that's an awesome way to bring that back because I feel like I hear a lot of stories from like my parents' generation when they were growing up as kids. Um, it was just much more communal.

SPEAKER_00:

Yeah, I think like they realized it took a village as opposed to like let me just worry about because I mean I I don't even remember what hoodie I gave them, but I just know like that's always the type of person that I've tried to be because I would hope somebody would do it for my kids if I'm running behind because you can't be on time for everything. Uh so I understood that.

SPEAKER_01:

Yeah. Is there anything else that you

SPEAKER_00:

I think just if you can, just take a mental day. Call into work. If you have kids while they're at school, and just don't clean, don't do anything, just sit down, watch some TV, take a day. Whatever it is that you like to do, take a day. Some people read, some people play video games, some people love Netflix. Just take a mental day for yourself, whatever day you can, even if it's just for a few hours, people deserve it.

SPEAKER_01:

Absolutely. I would argue it's required for caregivers. You can't keep going on empty. You will crash at some point.

SPEAKER_00:

No cars run on empty.

SPEAKER_01:

Yeah. What do you do on your mental day?

SPEAKER_00:

Play video games. I'm a kid at heart. I I have to be a kid at heart to work with so many kids in my lifetime. So I just I play video games. More into Call of Duty right now. So I just do that and that relaxes me. And I play basketball too. Getting older can't jump as high as I used to.

SPEAKER_01:

But yeah, you gotta watch out with that basketball stuff. My friends started to like twist their ankles and yeah.

SPEAKER_00:

Yeah, no, it's easier now. I'm not, I don't dunk as much now. So underneath the rails, so I don't have too many troubles.

SPEAKER_01:

Well, thank you so much, Akili, for taking the time out of your busy, busy, busy schedule to do this recording and share your experience with Kane and all of those in your life. It's a complex web of support and love. Please keep taking care of yourself. I want to see more pictures on Instagram of that smiley face of Kane's and the future of all of you together. So thank you for coming on the show today.

SPEAKER_00:

Thank you so much. I appreciate it so much. Uh wish you nothing but success in this platform. And I can't wait to go listen to it, and I just subscribe to your podcast.

SPEAKER_01:

Thank you so much. I still don't know how Achilles manages to do everything he has to do, from being a father of six and juggling multiple jobs on top of Kane's medical appointments. He's probably one of those people who only sleeps four hours a night. But even then, as Achilles said, it takes a village to get through an experience like this. And I'm so glad he got to a place where he felt comfortable with asking for help and receiving help. I also loved Achilles' point about performing random acts of kindness and how it's what makes our community stronger. It's a really important message for us to remember at a time when we're going through so much trauma and loss across so many communities. On a more positive note, Kane got his port removed one month early and is on track to finish chemo by early December. And that's a wrap for today. Please consider following the podcast if these stories are resonating with you. Also, I would very much appreciate any feedback or suggestions you may have for the show. You can email me at infotalkabout cancerpodcast.com or find me on most major social media platforms. Thank you for listening.