Ep. 17 - Finding Purpose After Losing a Child with Camilla Goodwin of Myla's Beleaf

Childhood cancer, grief, and what it actually looks like to build something meaningful after the worst possible loss. Camilla Goodwin lost her daughter Myla in 2020 to a rare and aggressive form of kidney cancer called Wilms tumor. She was eight years old. In the years since, Camilla and her husband Mike have opened a restaurant, started a foundation, raised over three million dollars for families facing childhood cancer diagnoses, and somehow kept showing up for their other two kids, their community, and each other.

This conversation goes to a lot of honest places. Camilla talks about the adrenaline that carried her through the early months, nursing school, a psychology degree, a master's in education, all of it driven by that same force that Jill recognizes from her own experience of loss. They talk about the moment she realized she was reliving her trauma every time she sat with grieving parents, and how she had to step back from that part of the work to stay healthy enough to keep doing any of it.

There is a lot in here about faith, or the loss of it, and what slowly comes back. About the ways Myla shows up for her family still, through leaves in unexpected places, through the way her kids talk about her every single day. About what it meant to keep Myla's diagnosis framed in hope rather than statistics, and how that shaped the final years of her life.

Myla's Beleaf provides financial support to families navigating childhood cancer, from active treatment through end of life. They have helped 360 families in four years. The foundation is based in South Florida and operates across the state.

Contact Jill K. Bershad, LMHC, CAP

• Email: jill@jillbershad.com 
• Website: jillbershad.com
• Instagram: @jillkbershad.lmhc
• Facebook: jillkbershad

Transcript

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Hi friends, I am Jill Burshad, and this is the Present Moment Project. Come with me on a journey of healing, transformation, and curiosity. I'm a licensed mental health counselor, a Reiki master, hypnotherapist, a sound healer, and an EMDR trauma therapist who also is a widow. I have learned how to move through life with grace in the aftermath of tragedy. I have learned how to use these modalities through my own healing journey. I hope you're listening, and I know this podcast will help you on your healing journey as well. It's not always easy, though you too can laugh again. I look forward to having you along this wild ride with me. So here we go. Let's get started. Hello, friends. I'm Jill Bershad with the Present Moment Project Podcast, and today I am so excited to welcome in Camilla Goodwin. Thank you for having me. I'm so happy you're here. I'm happy to be here too. We've had so much conversation already this morning, and I'm like, no, no, no, wait for the podcast, wait for the podcast. I want everybody to hear this. Right. So, okay, so how did we come together? This is how we came together. So I met you at the O'Teal. Yes. Right? Yes. Yes, at the Kofi Day of Service. That's exactly right. Crazy Uncle Mike. That's it. Who is your husband? Crazy Uncle Mike is Camila's husband. And we were having an amazing event, the Kofi Day of Service. It was so much fun. Wasn't that amazing? Yeah. Actually. You know, all the people that come together for those events, they're really there to make a difference, you know. They want to, and I always tell people, do something that's gonna just pull at that heartstring, and you're gonna feel that you are you're helping. I mean, we should all be. It is something I'm so passionate about. That's it. And people ask me all the time, like, are you having so much fun? Like, what's going on with the podcast? And I'm like, you know what? I am just having so much fun. And I don't care about numbers and viewers and how many people, but I do because I'm doing this really with purpose, you know, and intention. And I want the message to get out to as many people as it possibly can that you can go on, you can continue to live and even thrive after experiencing trauma and tragedy and loss. And so we were at the Kofi Dave service, and I just want to say, you just said something. You said do something that you know pull at your heartstrings, right? Yeah, isn't that what you just said? I did, I did. So I just want you to know that music has always been a big part of my life. I played the piano for many, many, many years. Really? When I was younger, I would compete, it was very serious. And then um, I didn't want to be as serious, and I just wanted to learn Billy Joel and this and that and the other, and it was so serious, and all the competition. And my piano teacher, literally, would come to my house and like clip my nails. Oh gosh, and I would have to sit at the piano for like three hours a day with the metronome. Anyway, wow, that is hardcore. And I always was singing, and I always was singing in chorus and all of that good stuff. Right. Anyway, after my husband passed away, I was frequenting crazy Uncle Mike's so much. Good. And what I was able to do with the adrenaline that was in my system after my husband passed away, I was there all the time. Yeah. And when the adrenaline ran out, I wasn't. Yeah. You know? But this is what I wanted to tell you before. And I said, wait, wait, wait, we have to wait for the podcast. Yes, yes, yes. Is that one day I was driving, I think I was on Atlantic actually, and I see a Jeep next to me at a red light, and there's a big thing that says crazy Uncle Mike on it. Was it a black Jeep? Yeah, it was Mike. It was Mike. Oh, so he must have driven actually. That's our friend uh Roger's car. So he must have been in Roger's car. Well, it was a Jeep and it said Crazy Uncle Mike on it. Does Roger's car? Rogers and actually Tara, our chef Tara. She used to have, she might still have that. It was the tire being covered, like the tire covered right now. Yeah, yeah, yeah. So even Roger. I was honking and honking and honking at the red light, and finally I got Mike's attention, and he rolls down his window, and I said, You're Mike, right? And he, and this was a while ago. And he said, Yes, yes, I am. And I said, I just wanted to let you know that my has my husband passed away, you know, in July of 2022, and your place, crazy, crazy Uncle Mike's, really was such a huge part of my healing. And I was there all the time. Wow. And the music is ri was such a huge part of my therapy and the healing. And then when I saw you at Kofi Day of Service, I had never met you before, and you were there. And I never knew about your daughter. I didn't know. And we I went up and I introduced myself and I just said, Will you be on my podcast? Because you guys are doing an amazing thing here. Somebody pointed up to the wall. You have um something on the wall for your daughter. Do you know what I'm talking about? You know, probably. So we have a couple of things that she that she created. So before we opened, uh, there was an old when we took over this building. I mean, the building was how long has it been there? Crazy Uncle Mike's. So Crazy Uncle Mike's, we took over the building in 2018 is when we started doing all of the renovation. Might have been 2017. What was what was happening before 2017? Was there a crazy uncle Mike's? No, there was a uh crazy something uh like a um Mexican place. So they had, I mean, we moved, they had a bar right in the center of the room, so we had to do a lot of construction to actually, I mean, it took us with permits and everything because the city of Boca is a little nuts when it comes to permits. So we had to wait for permits, and it probably took us a good year or two put the building together, and then Mila got sick in between there too. So, you know, Mike and I were taking shifts in the hospital, sitting with her. So that's why I asked you to come on to the podcast because I had no idea that you and Mike had lost a daughter in 2020. Yeah, and that you started this foundation in 2021, and I said, Will you be on my podcast? I want to put a spotlight on this foundation. Thank you. And you said, Absolutely, and I'm so c glad I called you again. Yes, because you never got my first message, and I was like, She definitely seems like a person who would call me back. So I am gonna call her again. And that was like last week, and here you are, like we made it happen so fast. So I and then we were just talking about because you said from here you have to go to hospice. So this is what I want to talk about. So 2020, you lost a daughter and she was young. We did, yeah. She was eight years old when she passed away. And uh yeah, from 2020, and it's interesting because I was listening to what you were saying, that music you came to uh to Crazy Uncle Mike's to listen to music, and that was you know, it's something that helps your healing. It was actually a second home, I have to be honest. And I love that. It was like a second home. Uh people were like, if they can't find you at home, they're they know to look for me at Crazy Uncle Mike's. Good. And I I I want to get my energy back and that adrenaline, not as much as I had because it was a lot. Sure. But it really, it's it's really um, it's really brilliant how the body works. And this is something I talk about obviously with my clients all the time after trauma. I was filled with adrenaline and it allowed me to get things done and to do what I needed to do. And and then when it was gone, it was gone. You know, you know, yeah, and I I can relate to experience that I did, and I'll tell you how. So when I uh when Mila passed away, uh we the first thing I did, we sold our house that we were living in, and uh, because I couldn't fathom being in the same house that where we lived, even though she didn't pass away at home, but she loved that house, she loved her room. Every time I would literally spend the days just crying in her room. So I said, this is it's not gonna, I I'm not gonna heal, I'm not gonna be good for my other children. So we moved, we rented a house in Highland Beach, and that was right before COVID hit. So we were right on the intercoastal, just in the most amazing setting. The water was a big yeah, big one for me. But then also I went from you have to come to the beach with me. This is another story we're gonna talk about in a minute. Yeah go ahead, go ahead. You're you're on the intercoastal. So yeah, we were on so we we're right on the intercoastal, and I am not I grew up Catholic, uh, but haven't been, I'm not super faithful, but you know, my kids went through, they were baptized, went through first communion, all of that. And uh when Mila passed away, I lost my faith. But oddly, the music, and I love music also, I'm not so much a concert goer, but I love listening to music wherever I am. And I remember, for whatever reason, I would listen to worship music, and I would walk up and down the A1A and just listen to worship music. It was the weirdest thing for me. And then I we we went through the the treatment Domila received in the US when we came to a point where it wasn't working anymore. We went to Austria, and in Austria, I learned so many things that they do better than we do here as far as cancer. So there is first and foremost, we had to send her tumor slide because she had a solid tumor. Can you say the name of the cancer? It's called Wilm's tumor. And Wilm's tumor is a kidney cancer, and for the most part, it's a very treatable cancer. Um, but she had her cancer cells were called diffuse anaplastic. They work in mysterious, literally mysterious ways, super aggressive, and spread like wildfire. Uh so that was the problem that we had with her. But what they did in Austria, they we send the tumor slides. So the first thing they did, the proposed treatment that they had for us, they tested on her tumor slides first. And then the tumor slides, it's not identical to what happens when you actually use it on it's called in vivo versus in vitro. Sure. Uh it's not exactly what happens, but it gives you a good indication. Sure. Five out of the six chemotherapy drugs that she was on, she was resistant to. So they could have upped the dose, they could have poisoned her with all kinds of and I'm not anti-chemo. Don't don't this is not an anti-chemic. I totally understand propaganda, but I was blown away by that. And she was actually improving. The problem with her was that she had tumors in her brain. And in her lungs, I read. In her lungs, yeah. So she when she was originally uh diagnosed, it was kidney cancer that had spread to her lungs. And eventually, a year and a half into it, it went to her occipital lobe. And um, so that's the problem, you know. A lot of times there's the uh blood-brain barrier where it's there for a reason to not have things go up to our brain, but when we need to, we have a hard time getting drugs up to the brain that will would um would heal her. But so the reason why I tell you this is because I actually threw myself into nursing school because I was gonna go, not because I wanted to be a nurse, just because I wanted to go lobby for a change based on what I had seen in Austria. Well, a year and a half into my nursing school, I'm now I'm now the president of the student nursing association. I'm working full-time. I'm like, this is not what I wanted, but that was part of my my I guess my whole idea of getting back to the adrenaline. Yes, was exactly that. So I pivoted out of nursing school. I got an undergrad in um psychology, and now I have a master's in education. So um I so but I did all of that exactly what you're saying, is because you just have that you have to do something. You can't just sit and drown that getting swallowed into that black hole. I always say that to people. It's so easy. It's so easy to j and I see that with the moms that I counsel, uh counsel, I know what you mean, you know. The moms that I that I chat to on a daily basis, they a lot of them just go into that I'm I can't live. Right, and that's exactly why I'm doing this podcast. This is exactly why I'm doing it, and I just have to say something, which is so bizarre. You just said so many things that I can relate to. So after Adam died, it was a lot of music. Oh, and about the adrenaline, and you went to nursing school and all that, he died, and I was gonna get my doctorate. I was gonna start a new company. There you go. I was about to buy it in a new house. Like, I was like, okay, this is cra and now I don't have the energy to do most of those things, but I'll get it back. It comes in waves, it comes in waves, it definitely comes in waves. And imagine how how your body would be so angry if you were always like, let's go. Oh my gosh, that'd be huge. Yes, yes. Yeah, so this is so interesting though. So music was a big part of it, yeah, and also this is so crazy. I I grew up in Miami around the water. I spent a lot of time on Miami Beach and in the Keys, and and um I was going with a friend to a beach club a lot a couple years ago, and I thought to myself, this is so healing. This is so incredibly so incredibly healing, and I don't know why I don't do this more often. And we live here, I agree. Well, I joined the beach club. Oh god, and I have to just tell you that that, and I've said this so many times, that it is so out of the box for me to have joined a beach club. I was raised in such a scarcity mentality, such a lack mentality that I've had a fight against in my whole life. And I said, you know what? This is gonna be really good for me and my family and my children. And so I go to the beach and I sit, and oftentimes I'll go myself, and I just want to be there alone and look at the stars and listen to the waves and watch the water go in and out, and it is so powerful. And and I bought myself my first pair of real headphones, like Apple headphones, like um noise canceling, you know, the ones that the the big ones I brought them with me because I might try to go for a little walk later. So I now go to the beach, I go early, and I walk on A1A, and I put my headphones on, and I listen to music, and I see the water, and I look at the mansions. I was just talking about this last night with do you know Dito? I don't know. Dito Bala, he's the CEO of Kindness Matters. Oh, you know what? I met him and he was there that night too at um the Kofi Day of Service. Yes, and I was talking to him and his wife, and we were talking about this exact same thing. And it is such a different experience walking on A1A than it is in like traditional suburbia. Do you know what I mean? And it's just weird, like that you said you've been doing the same thing. Yeah, yeah. Oh yeah, that was, and and you know what? I told myself that I'm a real estate broker, so I told so the only time that I get to see the beach is when I show properties, right? When I show beach properties, and that really annoyed me. So I said, okay, I need to get better. So just a couple of days ago I did the same thing. I parked my car right uh off of Linton and A1A, and then walked to Atlantic. I sat and watched uh some kite surfers for a while. It's amazing. We live in paradise. One day we walk I parked at the beach club, and then I walked to Atlantic Avenue, which is a good two miles maybe. And then I was with my daughter, we stopped at Pira Vita, we walked back, we sat at the beach. It was the most and the thing that's coming up for me right now is I'm trying to be super intentional, and it sounds like you're trying to be super intentional too. And I feel like when you've dealt with something so incredibly big that like shakes up your world and your nervous system and just everything you've ever known, right? You kind of have to be intentional if you want to move forward. That's it, you know. That's it. And I love that you use that word forward because I remember when um when my lad just passed away, and you know, I was as you know, you go through all these various stages and of anger and sadness and whys and whys and whys, and and you know, for me I realized that I can ask I can ask why until they're gonna be. I was gonna ask you, what did you come up with? Because there's there's no why nobody can give me that answer, and I um I just realized that my life is so short. It's like I can't believe we're mid-May already, you know, almost half of the year is gone. And what have I done? And it's like almost now I have so many things that I want to do. I just finished a novel. So I am I did. I love writing, so I've always been a big writer. I I I I wrote a book for Myla. We have a book published for Myla, which is a book, it's called Who Are You Cancer? It's a children's book, it's on Amazon. Uh, we actually just got a publishing company to uh to print books for free for us, and now what I'm gonna do, because I'll tell you, this book is written with from Myla's perspective, it's in with Myla's voice, and it's basically giving um children and caretakers a guide to what the journey is gonna be ahead, from the time that you get diagnosed to your port to what's an oncologist. But it's written with some humor, there's some there's some jokes in there, and it's really a book that I know that people are gonna benefit from. So with this uh this beautiful donor that we had that's gonna print the books for us, I'm gonna just send them to major hospitals and see if there's and that book is now belongs to my list belief. So any any orders that come after that is gonna go strictly to to my list. So I did not know that. And it's funny, I didn't know you were a real estate broker either. And you started this foundation and I and you were saying you're one of the things you do is you go to hospice. Yeah, which I said, wait a minute, don't tell me yet. I want to hear about it on the podcast. But I did see, and I want to hear about that. And I don't know if I ever finished the story about Mike. I saw him on Atlantic, I was honking, he rolls down his window. Did I say you didn't say what I was doing? And I just said, I wanted to just tell you you're you're Mike, right? And I he said, Yeah, and I said, I just want you to know my husband passed away, um, what however long it was at that point. And I said, I just want you to know you have made such a difference in my life with what you've created at Crazy Uncle Mike's. And we had this whole conversation at the red light, and then it turned, you know, green. It turned green. I was like, okay, I'll see you this weekend or whatever. And it was just so beautiful, and I just want to say that. And I don't know how involved you are with Crazy Uncle Mike's. I am. Are you? What else do you do? What's like really? But but and I want to hear, I want you to tell me all about the foundation. But this is what I wanted to say. I also saw you guys just won something and you're about to be honored at Boca West. Yeah, it's so through the Boca Chamber of Commerce, we do a lot of events with them. Okay. Um, and we just got picked as the small business leaders of the year of 2026. So for Crazy Uncle Mike's. Crazy Uncle Mike's, yeah. Okay. But we do so I like to just so our space is obviously we own it, but it's really a community space. It's a space where we celebrate other foundations. We have, you know, Boca Chambers, we're big, big with them. But we also have some new stations that have their parties there. We have uh the firemen, they come and they have their, you know, the fireman balls, there, we have weddings, we have new yeah, we do, we do. So we do a lot of things. And um, I actually volunteer for my friend Evelyn owns a school. It's called Booker Booker Ratona Achievement Center, and it's a school for neurodiverse children and adults. Oh and the adults come to Crazy Uncle Mike's and I teach them vocational skills, so it's the coolest thing I've ever done in my life. But I teach them. Is it the coolest thing really? Because you've done a lot of really cool things I'm learning. That is at one of the things. One of the top, top. So, yeah, so they so I see these, they're they're adults, but I see them going from being shy, they didn't know they they didn't know me, they didn't know what I was gonna do with them. Uh, but now we I I teach them everything from etiquette to how to look someone in the eye, and you say thank you, you say please, how to you know, set a plate down, how to how to uh carry turns. With with drinks, I mean how to roll silverware. We have a full program. It's how it's a lot of fun. How often do you do that? Once a week. That's a lot. Yeah. Considering everything else you do. Yeah. So what are you going to do when you leave here? You're going to go to hospice. I'm going to go to hospice. So we have a partnership with Trustbridge. So Trustbridge is one of the most amazing places that I have been. And let me tell you, I was, even though Mila never, she was never in hospice, but I think that the human mind associates hospice with death, right? And death is for the most part scary to people. And I probably have some unresolved trauma in my life. Yes. I was really scared to go to hospice. And we were going to do some stuff with them because they are predominantly for um adults, but they're now going to start bringing in some pediatrics there. And uh so our role with uh Trustbridge is that we basically when a family comes in, we have a little cart, we transform the room to make it a little bit more child-friendly. Now there's some of these pediatrics that come in, yeah, they they don't, I mean, they're already um not coherent or they're there to just be calm and taken care of by the nurses and the staff there. Um, but we want to make sure that whatever time they have left, they feel like they're still a child, not in a sterile kind of setting. So I hear Janine over there making noises. No, I love it. Say what you want to say. It's just so beautiful, isn't it? Yeah, it's cool. So now we're going, we're actually transforming one of their rooms permanently into a child room. So we're gonna go up there. I uh I love I'm an amateur designer, so I love transforming spaces. Well, this is what I do. I do a lot of things, otherwise I would go crazy. They're all distractions. Of course. You do? Yeah. A lot of it I do because I love it, but but a lot of it is distractions because it's much better to be distracted than to sit and think about that black hole. When you said, when you said there's a little bit of humor in the book, based what I n on what I know about Mila. Yeah, that doesn't surprise me. Yeah, she was a spitfire, right? She was. Holy moly. This kid was, you know, Mike and I and our other two kids, we are very much a without making us sound like we're hippies, we're very spontaneous. So there's What's wrong with hippies? There's I feel like I'm a self-proclaimed because we have roles where we should be very organized. Supposed to be whatever. Yes. So we Mila was the only kid, yeah, only kid, only person in our household that was organized. This kid would literally for her birthday, she would write birthday invitations, freehand, drew it, based on the relationship which she had with the individual, with the individual kid, and then she would have us mail it. Uh, if it was somebody's birthday, she would make sure that we that birthday was set up the way it's supposed to in her mind. She was extremely organized and loved to have fun. I mean, that was her thing. She loved to play jokes on people. She was just an exceptional, exceptional person. I definitely got that. Yeah. And beautiful. I could tell from in the inside. I didn't obviously know her, but I could just tell, inside and out. She was exceptional. What is your what are your thoughts? Have your have your thoughts or I don't know if thoughts is the right word, but uh around death. I find that my beliefs around death are very different now. In what way? You know my husband was very sick, and he ended up taking his life. And I really do understand why he did that. I really do. And I feel like what you were saying before, I mean, uh you know the expression, the days are long, the years are short. Sure. Or right? Yep. Okay, right. And I just like my goal now is just to have the best life that I can have, show up the best that I can, learn as much as I can in this lifetime. Yeah. You know, in this part of my journey. Yeah. And and don't waste it on minutia. Sure, sure. Um, minutia is just the and there's so much out there that you can get caught up in. I know. There's so much, and I and everybody dies, and we can't get away from it. Yeah. And I feel like going back to that why, like, why did this happen to Mila? I have no idea. No. But I'm pretty confident there was probably a reason. Yeah. Listen, I and And I don't know, that's just me. Yeah. You know? I I can be okay with that. I can be okay with that statement. The only thing that I would say is different between Adam and Mila is that Adam was-so different. No, no, no. But but but but just hear me out. Okay. So, how old was Adam when he passed away? Yeah, it was so different. Right. So 52, and she was a child. I totally get that. I don't know what the why was either. I would love to know for Milo. And that's the thing. I am 49, and I am, I still I hope that I have a lot of years left just from my because I want to experience my kids. I want to see what what they're gonna do, right? I have exceptional kids. I feel I want to help more. But I still have a really hard time with how an eight-year-old that really is, she was the most altruistic person that I have ever met in my life. And a lot of these cancer kids are, because that's my experience, right? Why in the world, if there's a God, for those of you that believe in God, why the hell does that happen? You know? And nobody can tell me why. I do not know, and I'm not gonna tell you I know either, and I don't know at eight years old why it's crazy. That would happen. And you just said you're 49 and you want to live, and that's kind of where I'm at. Like, I want to live as long as possible because I want to see my kids do everything, and my grandkids, and my great grandkids, everything and on and on. It's like, but I know the reac the reality of the situation, so I just have to do as much as I can and appreciate life now and pick what's important and what's not important. I believe that Adam, his soul, I talk about this, you know, like with my friend Laura, you know, about soul contracts, and this was in the cards for him before he even, you know, came onto the onto this plane. It is a much different story when it's a child. And I was wondering, I was gonna ask you, has your faith been restored? Are you still battling with that? Because obviously that's such a common response. Sure. It's it's so you know that probably more than anybody. Oh my gosh. Yeah, that's a good question. You know, I I love having faith because I think that for the most part, it just makes us feel better about it. Can't just be here. And I have so many signs from from Milo that she's giving me that I think the leaves. Yeah, the leaves. Oh my gosh, I wanted to tell you on that website. I love how the little pointer is a leaves. That's good. Well, our our uh website was brilliant. I that's the word I use. I was like, this is brilliant, very creative. Yeah, so the leaves are a big thing in our in our family, and we see leaves all the time. So, and random places where there shouldn't be a leaf. So I know that this is how she manifests and this is how she lets us all know that she's with us. And it at first it it was so because people would always tell me, oh, the worst, the people are bad at, and it's I I guess it's good that you're not good at knowing what to say when a child passes, right? Because it's one of those, but people that try too hard, by the way, if you're listening, don't try too hard. Wave if a child passes, just kind of read the room and do not tell a parent that the child is in a better place, because that is freaking not true. But I can't even tell you how many times I heard that. Oh, well, she had cancer, she was suffering so much, she's now in a better place. Fuck you. Can I say that? Yes, you can say whatever you want. That is not don't put that out. My my thing is her place with me, she was in the best place. Yeah, arguably, she was suffering, but she also had to suffer. I know, but in between they're not she was a when she came out of the bigger. She was a bright light. I know she was. I could just look right in the eyes of that picture, yeah, and I could tell she was a bright light. She was amazing, absolutely freaking amazing. So it's so I still so to answer your question, do I have is my faith restored? Not fully, but I'm open to I'm not angry with God anymore. So that gives me now ask Mike, he has a completely different feeling. Of course, everybody does. He will never step step a foot back into church because of various reasons. But he says that he kind of believes in God, but he um but definitely I think that I'm more open to it than he is. I feel like, you know, I have to, just to piggyback on what you just said, I have to have the faith and believe that there is something bigger. That's what brings me comfort. And I and I don't feel like I'm just trying to talk myself into believing it. I really do believe it. Yeah. There's a book, I mentioned this a lot. There's a book that a rabbi wrote a long time ago called Why Do Bad Things Happen to Good People? I've heard of it. Yeah, yeah, yeah. I I now I have to read it. I love reading. Yeah. I love to read too. It's been really difficult for me to read in the last few years. I don't know about you. Is it hard to just focus on something or oh my gosh? I've talked about this. I don't tell me your experience, but I used to have, and I've mentioned this before, I used to have a photographic memory. I was very organized, I was very detail-oriented, I was on top of stuff. It I mean, I was very skilled that way. That was like a forte of mine, but my brain has shifted, it's changed so much. I never had any sort of ADD in my life. Never. I feel like I have full-blown ADD. I can't remember. I can't. I was just, didn't I just tell you this before? See, I don't even remember. Before this, before we just started record, before we just started recording, I was telling somebody, it might have been you, but I think it was just Janine. I don't know. Anyway, that I was on the phone. I was on FaceTime with my daughter this morning, and I just hung up on her in the middle of the conversation. And then like 10 minutes later, I was like, I don't know if I ever got that answer from her. I need to call her back. And I call her back, she goes, Mom, why did you hang up on me? I go, I have no idea. We were in the middle of a FaceTime and I just hung up on her in the middle because I probably went somewhere else in my brain. Yeah, yeah, yeah. I don't know what happened. It's a little scary. Well, maybe you should go and check it out. Yeah, I've been saying that for a while. I'm not really that worried because I know it's a trauma response and I know it's a stress response. And I have a my third daughter is it or my third child. I have two girls and a boy. And I wanted to ask you, how old are your other two kids? So Jada is 19 and Antonia is gonna be 25 under 25. Oh my gosh. Wow. So I have a 20, a 25-year-old. Really? And I have a 23-year-old. Oh, that's right. We talked about it. And um I would be so curious to ask you, which I'm going to because I can, because we're recording a podcast right now about how your other two kids have navigated all of this. Thank you for asking that. Yeah. Oh my gosh, this is not just about you and Mike, or it was never just about Mila. How much it affects the everybody else, the other kids. And you have a responsibility to your other kids and it's well, I always tell people, you know, while while I was so brave and doing all these things when Milo passed away, but I was also driven solo by the love that I have for my children. Not even at that point, Mike. Mike was when Mila passed away, Mike became just a person. He wasn't even like a shell. It was yeah, yeah, yeah. It was just some somebody that was there, and we, you know, we made sure that that household stuck together. But my my children, you know, there's also Jada. Jada is now my youngest, but she was the middle. So she also has a little bit of that middle child syndrome where she felt that she was forgotten a lot and kind of we paid attention to the older one. My older one has some learning disabilities, so we had to, there's a lot of um, a lot of extra care that she received growing up, etc. And Jada was she's always been brilliant. The kid is brilliant. She knew how to, I mean, she basically took care, she picked her own clothes at two and a half when she was going before she was going to school. She picked her own. I mean, she's always been that kind of Jada. Yeah. Jada is absolutely amazing. Um, but Jada is also an introvert. So when she was, when Mila passed, she had a lot of guilt because Mila was eight. She was also aside from having cancer, she was just a normal eight-year-old kid that wanted to hang out with her older, you know, 12-year-old sister. Right. But her 12-year-old sister did not want to hang out with her eight-year-old sister. So there's a lot of things. Yeah, so just natural, normal behavior. But Jada was also, you know, kind of beating herself up a little bit that she wasn't nicer to her. So that was so we had to work through that. She did some some therapy, didn't love the therapy, but um, she had a a couple of really good friends that she would talk to. It's so important. I know. It is so there's gotta be an outlet, right? Yeah, and that she was willing to talk to her friends about it. That and and I just, you know, of course, as a mom, you always want to be that outlet for your child. But if I was not, if I was not, I was okay with that. As long as I had somebody that they were willing to talk to, I feel the same way. So we've rebuilt our relationship, and the kid is my best buddy. She I love, love both of my children. But Jada's really exceptional. Antonia is great, she is um she's a little bit more of an extrovert, so she talked more and was able to also get through, and she was kind of getting ready to be out of the house, and she moved out, so she also had some other people that she kind of relied on, and and our relationship was never maybe as damaged as my relationship with Jada. But Antonia and I have always had a very solid, you know, it's a lot to navigate, isn't it? Yeah, and and with her learning disability, I was her coach her whole entire life, you know. Never put her on yeah, never put her on medication. She's on meds now, but but back then she it was always it just might be my natural way about me. I always try to see the good in people. I'm just this is what I'm thinking to myself. Is I can only imagine that you have been an amazing mother. That was my the best thing that ever happened to me was become a mom. I see a lot of you and me. I do. I think or me and you, that's the expression. I see a lot of me and you and just how we've like managed things, and I'm really glad we met that night. I do. Uh I also asked O'Teal that night to be the same night. Yeah, yeah, yeah. He just he he was here a few months ago. Oh god. I think it was a few months ago. I don't know, time is like a little bit of an interesting thing for me now. A lot of things now are like pre-addam, post-addam. It's amazing how that works. Do you do that? Yeah, yeah, yeah, yeah. All the time. It's like we look at a picture, it's like, oh, was that uh before Milo passed away or after she passed away, or was that before she got diagnosed? And we know with with Myla's photos that she had blonde hair before she got diagnosed. And then through chemo, when the hair started growing back, she it grew back. And she had curly blonde hair and it grew back dark straight. So that happened. Based on pictures, yeah. Yeah, we know that. I know you told me I can ask you whatever I wanted to. Yes. So I do have a uh question I wanted to ask you. What was she like? What was Milo like uh during the process knowing she was not gonna come out of this? So we she was such a little girl, and I just sensed that she really did understand too what was happening. And maybe she did. She did understand what was happening. The the biggest thing was that right before she got diagnosed, our dog we had a beautiful boxer, and the boxer had a tumor that she ended up passing away from because it was a boxer, and the only way that we could deal with it was to amputate her leg, and we decided not to do that. So a 12-year-old boxer, I'm not gonna amputate her leg. Right. So she passed away, and cancer was always I I've never babied my children, I've always spoken to them as people rather than children. So we use proper terminology. If there's cancer, we use cancer. If you want to know what a tumor is, I'll tell you what a tumor is. And uh when she was diagnosed, she knew what cancer was, and then the association was cancer and death because that's what Voxy or our doc went through. So we when we when she got diagnosed and we got um we basically went from in an ambulance from West Palm where we got diagnosed to Holtz in Miami, where she was treat where we chose for her to be treated. In where? Holtz, which is in Miami? Yep, Holtz is a how do I not know that? Yeah, it's a sil part of Sylvester. Okay, because I mean I've had family members at Sylvester and I grew up there in Miami. Yeah, so Holtz is actually a teaching hospital. I know Holtz, of course. Yeah, it's they've been around for a long time. Yes, yes, it's a public hospital. Yes. And the reason we actually had an opportunity to go to St. Jude's, but I opted not to go, and the reason was because the treatment would not be any different than she would receive at Holtz. And here we have friends, family and a support system. That's it. To for her, part of my opinion is part of healing is also you have you're surrounding yourself with the people that make you feel good, right? I that's what I keep preaching. Yeah how important it is. Yeah, that community that lifts you up when you're down. But anyway, quickly I want to tell you. But that's important. Yeah. So she we were in the hospital and now we were struggling with how to tell Mila that she has cancer. And this is after we went through a schlep of things when they needed to diagnose her. She w she was actually uh not able to be ex tu uh extubated once once they did a biopsy of her cancer, because it was the same cancer they determined same cancer in her lungs as the they knew that it was Wilms, they just needed to know what histology, that's what it's called. So uh they when they went in, she had a VAT surgery, and then when they tried to extubate her, they weren't not able because her lungs were so compromised. So she was struggling to breathe. So we had another couple of days or so that they needed to figure out how to get her extubated. And then we're sitting and she's on morphine because obviously she's pain it's in she's a huge pain. And then so Mike and I are talking about how the hell are we gonna tell her? What words are we gonna use to not scare her? Well, we never got that opportunity because this stupid uh ER uh physician, he just took it up on himself and he said, You have a tumor. And she goes, Yeah, I have a tumor. And that's kind of how yeah. I mean, I'm not surprised, unfortunately. I'm not surprised. Poor bedside manners. And it was one of those, like, come on, dude, uh respect us, allow us. That is just I want to say that's shocking, but it's just not shocking. So after that, don't you think those somebody should know better than that who's an ER doctor? You should you would think, right? Oh my god, they need to be taught, and that was actually part of that. How you said you were gonna start a business, that was part of what I wanted to start. I was like, I'm gonna start training these doctors how to actually I'm gonna do this, I'm gonna do that. We gotta make sure we're on this. You know, teached them bedside manners, but because you and you know this. If somebody, isn't it better to get Give people hope rather than kill their hope. Yes. We had we had we had the first oncologist that was assigned to us. She her name is, I'm not even gonna tell her name, but she was uh an older lady, and probably her now I can consciously look at that and objective objectively say she was probably using this as a coping mechanism for her to be able to continue with her work. But she basically said, Your daughter has a 20% chance of survival, and this is uh the protocol that we're gonna do. Nothing like, you know, I'm so sorry if there's anything that you need. Something. And I was like, Lady, I do not need you. A class in this. I I don't need you. So we fired the first oncologist, and then we got to her uh oncologist of a Dr. Dr. Poda. Antonello Poda is an angel on earth. He walked us through, but and he was a big Mylan him had, he's actually in my book too. Mylan him had a good little fun banter. I'll bring you one when when I get them printed. Yeah. Oh, they're not printed? They're printed, but they're on Amazon, but they're really expensive there, so I'll just bring you one. Okay, well, I just want to read it. Yeah. Um anyways, but she so I think that she so she knew that she had cancer, but there's no need for her to know that she had 20 cent 20% chance of survival, you know. And then once she knew that, like what did that look like? Yeah. Yeah. She she did not know that. So we kept it positive all the time. We're going to get through this. We had a bunch of things that we I she was super afraid of, the port at first, too, you know, when they needed to access the port. So I worked with her. We had a routine and a ritual, started a beautiful music, and we counted, and she learned the difference between what is it, what does it mean when some because for children, everything is painful to children. So I needed to determine what pain meant versus being uncomfortable. So she was able to determine quickly like this is painful versus uncomfortable. She was able to breathe, like we did a lot of breathing techniques with her. She was just the most coachable because she wanted to be better. And she knew that by working through all these, we put her on a special diet because I believe that sugar, you know, cancer and sugar does not go hand in hand. So I mean it does go hand in hand as far as that. So we took her off of that. She was poor kid, was drinking green juices, but that was she knew that that was her if she to have a chance to get better, this is what we needed to do. Did you end up like having a place in Miami? No, we we would travel back and forth. So we stayed. Sometimes we stayed at the hospitals for weeks on end, and Mike and I would take turns. But I always slept there because so sometimes I would drive to Miami three times a day, you know, just to yeah. Did you really? Because I had showings and then uh so I had to go. Did you consider not working during that time or were you like, no, I need it, I need it, I need this for my mental health? Well, yes and no, and also for a financial, because we had we were already um going into our because we were building crazy Uncle Mike's, you know. So Mike didn't have an income, so we were relying on savings and and let's just tell people too that this was right as you were going into COVID. Yeah, yeah. Yeah. Okay, and now is when I have to ask you what what was it that made you say, I am going to put one foot in front of the other, I'm gonna I'm gonna use this as a this horrific experience to help other people, and I'm not just gonna climb into my bed for the rest of my life. Yeah. So we had a a unique experience with a gentleman when COVID hit. Well, you know, we we got shut down, we had opened a restaurant, and then we needed to shut it down, and then the governor allowed us to do takeout. And then after a while, they were allowed to come and open for an open window, and we could serve them some alcohol through the window. And there was a gentleman that would come there every single day. And he uh Mike and him became really close, and he would sit there, eat, drink because he needed to get out of his house. He was working out of the house, but he was making it an insane amount of money. I actually don't know what he does for a living, but he was making, let's call it a million dollars a month. I mean, insane. Oh my gosh. And he when he learned about what we went through with Mila, he says, I want to help. So he goes, Do you and this is before we had our 501c3? So he says, I want you to figure out how we can help families that were in your situation. So at that point, I on Facebook I was friends, uh, I had not friends, but I was part of like all these different groups mindful of cancer, Wilm's tumor, and a plastic tumor. So I started going in, communicating with families who needs help. What what a what and uh did I read that you've helped over 300 families over at least over $2 million? 3.1 to be exact. 3.1. I think you need to update it on your website. Yes. We knew because this is from our gala in uh in March that we went up to 3.1. And then yeah. Where was it? So we were uh at Crazy Uncle Mike's. We have we tried Of course it was. We tried well, let me just finish with that story with the guy. So he basically just said, Hey, I want to give them five thousand dollars every time. So we would give them an increments of five thousand dollars, mail it. And I said, What do you want in return? And he goes, I just want a thank you card. So we would have every family that we helped write him a thank you card, $250,000 worth. We we distributed throughout the entire state and actually the nation too, because we had some cases in New York, in Boston, and that's kind of when we were like, oh my god, this feels so good. But is this is this um only for the type of cancer? No, any any childhood cancer, right? Childhood cancer, yeah. Yeah. Wow, that man, he's he's an angel on our he really is. We're still really good friends with him, and he's how could you not be, right? Does he still come to Crazy Uncle Mike's a lot? I'm gonna try to him and his wife are amazing. Just go about the place and say, maybe it's him. Maybe it's him. And he never wanted like public acknowledgement. Nothing. He wants to be as ananimous as possible. Yeah. Wow. Yeah, crazy. And so I asked you what helped you make the decision, one foot in the front of the other, how and he really changed the trajectory. That's it. He was the catalyst for us to say, okay, we need to de do this officially so we can officially, and now we have official partners. Nicholas is one of them, and we work solo in Florida. Do you know Brian Kauff? Uh yes. Yes. And I don't know why I know him. He's um he uh he's a pediatric oncologist at um Joe Domaggio. Maybe that's why I know him because we were actually diagnosed with uh the uh when Mila had the occipital tumor. Uh he we were in, we were we they found it at Jody. So I wonder, I I want to say he might be the head of the department now. I'm not sure. He played poker with my husband um every Monday night for years and years and years. And and uh I don't know if he goes so much anymore, but he is an amazing, amazing doctor. Yeah. And and he's a human. I haven't talked to him in a while, but I can certainly pick up the phone. Yeah, I would love to. Well, you want to connect with him? I want you to. Well, this is why I asked you. Well, I want uh you need to be connected with him. We have so we have partners. Wait a minute. Also, I'm so sorry, I have to just tell you this. Also, my close friend's daughter is the clinical psychologist at Joe DiMaggio. Oh, great. I need to connect you with her for sure. Because I'll tell you, out of all the hospitals, and we work with social workers, so in order for us to know that the can't that the unfortunately we live in the world of scammers, and in order for us to know that we're actually dealing with a family with cancer, we get them vetted through social workers. So we will work with we work with other nonprofits. Does it have to be a social worker or does it can it be an LMHC, a licensed mental health? Absolutely, absolutely. And we have actually an application, so they fill out the application, and that that way we know that we're dealing with a family in your need. I'm already thinking to myself, how can I help? Like, can I go to Trustbridge and help you decorate and put the stuff in the room? Like I want to know what I can do to help. Thank you. Yeah, for sure. We'll put you to work. I want to be put to work. Okay. Oh gosh, okay. Yeah, we're gonna run out of time. But um, but I know that can be such a double-edged sword because you're seeing these little kids, you know, who are and so you're triggered, but you know you're helping, you know you're making a difference. You so what is that like? Do you have a routine you have to do before you go walk into that room? So this is so I appreciate you asking that, and obviously because you're in this field that I can. I can't imagine how triggered you would get. So let me tell you the first, so we've been an official working 501c3 now for four years, and the first couple of years, I f I felt that I was the only one that could talk to these grieving parents. I was the only one that could understand what they're I would spend hours crying with them, and then I realized, I'm like, I am reliving my own journey through these parents over and over and over. I am miserable. Or you're reliving through the roof. You're reliving your trauma every time. It's it it was insane. So I said, okay. So I talked to Darcy, my executive director. I said, Darcy, I can't do it anymore. I said, I am this is not where I'm good. I'm good at talking to people, fundraising, making connections. Is Darcy a social worker? No, she's she's just our executive director. Oh, okay, because I know Darcy, uh Darcy, who works for Boca Regional, who works in the cancer part of Boca Regional as the so head social worker. Oh wow. No, Darcy is she needs to be put in touch with her too. Yeah. Listen, the more the better, I swear to God, because I want everybody to know. Everybody needs to know. And listen, and everybody needs to know because m I have a dream. And yes, I have a dream. I know, I just almost started singing. I have a dream too. I love helping, and I love that what we do in Florida, but we have right now we can't touch anywhere else in the nation because that's just a promise that we've made to our donors. And I would love for that to be extended to the rest of the nation too. So eventually some people I think that I can connect you with. Because this is how my brain operates. I'm already like, okay, who can I connect you to? Oh, we need to get you to talk to this person. Oh, this person's gonna be a really great resource for you. We we definitely need to do that. And again, this is exactly why I am doing this podcast. Because to touch on what you said before, you chose to do it in Miami. This is where your support system was, your community. And I cannot stress it enough. I say it every time I'm on this podcast, that it was my community that got me through this process, who still continue to get me through this process. It is so not linear, yeah, as you know, and there's good days and there's bad days, and things might frustrate you that never frustrated you before because you're trying to carry like the load of 18 different responsibilities, and you know what I'm saying? And um, where are your kids? Where are your older kids? Are they here? So Jada is in UF. She just finished her first year in UF. Congratulations! What is she studying? So she's gonna be a pediatric oncology surgeon. Yeah, she's been wanting to be that since she was 12 years old, she just turned 19. And can I tell you something? My daughter, who's about to start college, I'm so proud of her. She's worked so hard. And let's just talk about this for one second. And your daughter, too. Like these people, these people are children. My daughter was 14 going into high school when she lost her father, who was her person. Your daughter lost her sister, which is a whole different ballgame that I cannot even pretend to understand or know what that would be like. And I just have to say that my heart is really just hurting right now. It it's just hurting for you right now, and I'm trying to hold back my tears because I feel like it's gonna be a big one, and I don't want to use the last minute we have. So um I just like like you said, like just being a mother and our children are just and I I just I just I yeah, I'm speechless, which does not happen to me very often. Well, I yeah, it's it's it's one of those sometimes you just I I look at myself in the mirror and I'm like, what the fuck? How did I I know how do I just move forward? I and I look at her, we have her pictures everywhere and talk about her, but through Milo's belief, I talk about Mila every single day. And that was my biggest fear. And I talked with my kids, we talk about her with Mike, we talk about her, we joke about you know, the this is how Mila would have acted if she was here. There's not one day that we don't talk about it too. My kids don't talk a lot about uh they're all different, very different. All three of are so different, and I'm so different than the way that they've approached things. Yeah. Um but you know, my husband's glasses are still on the coffee table exactly where he left them. Oh my god. Almost four years ago. You've gotta be kidding. And my husband did die in our house. And we are still in our house. And I don't ever want to leave our house. Oh, good for you. I don't. And um Yeah. It's crazy. It's crazy. Life, you know, I just keep saying life is just this crazy, it is a crazy roller coaster. That's what I say all the time. And I am holding on so tight. And I also recognize, as you do, and by the way, you know, you said a minute ago you said about moving forward and moving. It's not moving on. On you are not moving on, people. Do you hear that? We are not moving on. We are moving forward in just a completely different way that we didn't know it was gonna look like this. And I think you're doing a really good job. Thank you. I think you're doing such a good job, and you are making good out of such a terrible situation. That's what my that's what I live for. And it has become my purpose, and nothing else matters. It's like, you know, I do this for to earn an income, but everything else is just you use minutiae before. This is all minutiae. This is my purpose. I'm driven to help, and it feels so good. It it fuels me. When I help, it fuels me to move forward in a comprehensive way. And my oldest kid, I own also just want to tell you, she works with autistic kids, so she so they're both just really giving me a lot of. Oh, this is what I was starting to say. My daughter, 14, was 14 when Adam died, was going into high school. Honestly, it was very, very, very challenging, as you know. Yeah, I don't have to explain it to you one bit. And now she's getting ready to start college and she's gonna wants to go into nursing. Wow. See, that's great. We need we need them, and we need people who are gonna be sensitive. No kidding. Who know, who understand. Anyway, I want to say thank you to you a million times over. I know we're gonna connect after this podcast. We have lots of information to exchange, to exchange, but I just want you to look into the camera and tell everybody, because I know there are people out there who need you and who need to be connected with you. And so, how do people find out about you and just exact like just quickly run down what this foundation how it can help you? You know, how it can help people. Yeah, so we um so uh if you have been listening, so this is what we do. We we help families that are being faced with a childhood cancer diagnosis. So that is the uh the qualifier basically that you have to have a childhood cancer. Um, but we do it in in different the tiers, so depending on what tier, if you're active treatment, or we even do it, we actually have um a small tier for even um afterlife, you know, if there's some funeral cost, um we've done that a lot too. We've had 13 kids that passed away that were ours. And um, yeah, and we love donors because we make such a big difference. Only in you do make such a difference. In four years, we've we've raised um over three three point one million dollars, helped three hundred and six. How long? Three years? Yeah, four years, yeah. Four years, right? Because it was twenty. This is our fourth again, fourth annual gala. Yeah, and not only that yeah, the fourth annual gala. Yeah. Was this past March? Yeah. Is it every March? Every March. That what what day does it fall on? It felt this year it fell on the 18th. It was actually Jada's birthday. So it turned 19 over 19. March is a big month for me because it was it's my husband's birthday. On what day? March 3rd. And my wedding anniversary is March 27th. Oh wow, yeah. And then in July, July is will be four years. Wow. July what? Well, he died on July 28th, but we it was not confirmed until July 29th. Wow. So that's what's on his birth certificate. Or birth certificate. Oh Lord, Lord, death certificate. And so it's like we have to go through like two days. Do you know what I mean? And I want to just tell you, I've thought about again, I've thought about being a doula, a birth doula, a death doula, a mess doula. Like, I just want to do everything to help people. And that's it. Yeah. So anyway, I'm yeah, it is. It really does fuel me. So anyway, I'm saying thank you. Thank you. And I want you to let me know however I can help and get the word out. And I definitely want to make some phone calls. Awesome as well. Thank you. I appreciate that. Thank you. I love you too. Thank you. Thank you for having me. Yeah, go to Mylus Belief. Yeah, Mylasbelief.com. We're out. We are. And remember, folks, the Present Moment Project is intended for informational and inspirational purposes only. The views and opinions shared by the host and guests are their own and do not constitute medical, legal, or professional advice. Please consult a qualified healthcare professional before making any medical or wellness decisions. This podcast is not a substitute for professional care, no matter how wise we may sound in this present moment.