Latest / Angel Moms Lumina Podcast / Episode 1: The Light They Left Behind | Meet the Moms & Angels of Lumina
Transcript
- Angel Moms: Welcome to Lumina. I'm Tammy. And I'm Julya And I can't believe this is our very first podcast, Tammy. my gosh, Julya It truly does feel so surreal. I just can't believe we're here. I was thinking that myself. I was thinking, like, how did we get here? Because I feel like we were just chatting online and like both of us just thought podcasts, and here we are. It's really incredible how it came together so organically. I mean Like you said, we were just connecting with each other more and more about our girls, our tremendous grief, our shared experiences. And then something just clicked and we thought, wow, what if our experiences can help others? I think so too. I think the girls had a lot to do with it too, because it was just like way too seamless. Everything just kind of fell into place. I know, I know. It's incredible. And, you know, when I think of Carrigan and Sasha, our girls. I just think of their radiance in life and that sort of led us to our name. Okay. Yeah. Let me I I really want you to explain the name. Cause when you when you said it, I was like, this is it. Well, I mean, you thought of angel moms, which is just so beautiful because that's really what our our heart is. And then I thought because our girls, they were just such a light in this world, such a positive impact. And that kind of light, it just doesn't fade. So Lumina just seemed to describe both of them, how they live their life and how we can continue to keep spreading that light to maybe help our community. Yeah, I agree. I think when you said Lumina, it just it it really made me think of the girls because it's like their light like radiated. And I think the fact that they were on social media and they were posting their journey, it reached so far. And that to me was really bright. You know, so I I just I really love it. I I thought it was perfect. And I love the way the two names came together. It just I mean, things are just come together in such a way that I just know that they they're guiding us really. I agree. I really do. Well, let's since we you know, we do have two other hosts and there are angels, right? So let's let's talk about the girls a little bit. I'll I'll have you start and tell us about Carrigan. Sure. Carrigan you know, she fought osteosarcoma for seven years. Osteosarcoma is bone cancer. And early on she said, you know, she's a singer and she said, I'm gonna keep singing. And she knew that cancer was gonna take a lot from her. But she was just so determined to keep singing and she kept that promise to herself. it wasn't easy. She did truly suffer along the way, but she was just so determined to keep fighting in a way that kept her connected to herself. And as her cancer treatments really drastically changed her. her lungs and her diaphragm, you know, her anatomy related to the cancer. She had to learn different singing techniques over the years. And she remained determined to continue her craft. And in fact, she sang up until just days before her passing. And I know that Sasha had that same kind of grit. I mean, those girls were so similar, just determined to keep helping others during their journeys, which is just amazing to me. That capacity to just keep, you know, keep spreading your light and to love and to have so much compassion for other people when you're in your own fight. advocating, educating, I feel like they were just similar in countless ways. They were. I think that's sort of how they met, right? I I'm sure. And I think the music and and how they lived brought them together. and yeah, Sasha was very similar. She was like Our one man show. And the one thing that was really, really changed me was watching her stay so true to herself. You know, like even before the cancer diagnosis, she was pretty true to herself. She had her own style and she just really wasn't bothered if someone said they didn't like something about her. She just continued on with what she thought was true to her. And she stayed that way the entire journey. and I think It it's another topic, you know, when we go into some of the things that the girls endured and what, you know, how that affected them or didn't affect them. But yeah, she just, you know, she taught me how to live, like not just be alive, but how to live. Like she cancer really she didn't let cancer rule her life. And like even when she had a tumor in every single vertebra, she would still wake up and try to do as much as she could. and I'm glad she did that because I feel like had she not done that, we probably would have only done like 30% of what she wanted. Because I think if we would have just been like, We'll do it when we're cancer free or we'll do it when we're in remission, we never really got an opportunity to be in remission for long. So yeah. Yeah, and our our story is is similar. And you know, I think the girls were just Just incredible in the way they did that. Like you said, they they both really there's a lot to their stories that we'll unpack at some point and what they went through. But through it all, they just remained so positive. And that positivity was just so contagious to everyone around them, including us. And like you said, you know, just being motivated by our our own children and how they were facing life and really inspiring us to seize the moment, seize every moment and not wait, because similar to Sasha, Carrigan didn't have remission. She had what we thought w was remission early on, but it actually wasn't. She had already relapsed. so we didn't get that time. So we had to make the time, take the time. And I think if our girls didn't have that attitude and didn't want to do that, then like you said, maybe we wouldn't we would have pulled back. But I'm so glad that they were the type that just had this incredible zest for life, regardless of where they were in their journey. Yeah, I agree. It's it's pretty amazing. So I am pretty confident they'll be on all the episodes with us and guiding us all the way. And I'm sure they're super proud of us because we're kind of doing what they did. You know, we're just like out there and just putting it out, you know, just putting our souls out there and And so that okay, so that this brings me to, you know, the question of what are you most excited about with this podcast? Gosh, I mean, I I just feel so energized about this podcast. First of all, I'm so happy to work with you and and have this opportunity. And I think that, you know, grief can be so sneaky. And even though I've been productive since Carrigan passed, I'm functioning. I've been involved in a lot of initiatives. I've tried to help others. I've tried to do all the things, but something's been missing. There's just been something that just felt like it was missing and it wasn't enough. And like her, I felt like I could do more to help others and sharing her story really helps me do that. continuing her legacy to help others. There's just so much nuance in the pediatric cancer world. There's just so many challenging things to navigate. And I think creating this opportunity with you to share experiences to help others that are walking a similar path, it helps fill in that void that that I've been feeling since I've lost her. I'm really yeah, I I agree. It's it's a crazy journey. And I think that's to me that's what's most exciting. It's the people and the topics like the The people on the topics that are gonna be part of this podcast, I mean, I feel like, you know, from briefly what we discussed our planned, you know, plans are it's like we're not really shying away from anything. I think the topics are endless, you know. We have so many. I mean, even just thinking about it, it really captures the entire journey and just life in general. I mean, you know, kind of like the dynamics that change at diagnosis. Like so many of us have experienced very similar things, you know, or like what would we do if we could redo the whole journey? You know, topics like that. I mean, those are very expensive, raw topics. I mean, I think we're gonna cover grief, loss, you know, survivorship. So so we already have so many incredible guests that we want to have on the I know. That's it's exciting. I feel like I just feel like we're gonna say everything out loud. What do you think? Yeah, I think saying it out loud is so important. And I honestly wish that during especially early on in Carrigan's journey that I had had a podcast like this. I really do. And I'm grateful for the moms that embraced my family and I and supported us throughout her journey. And that's where I sort of learned things along the way. Like one mom said to me, when we were denied a criteria for a trial, you can challenge that. I've done it. I'm I would never have known that. And so I think bringing in other families And other angel moms and other moms that are still in the fight that that have all this information to share as well is just gonna be so vitally important to people that are still walking this path. Yeah, I just really hope that Lumina can be a place where we can just say things out loud. Things that, you know, we would normally think in me not have someone to talk to. Yeah, I agree. I mean, there's so many sensitive subjects like caregiver burnout that I think as parents we don't want to talk about it because we don't really burn out. We keep going, but there are times when we feel it. And, you know, I think being able to say that out loud is so important and to talk to other parents about that same feeling of, you know, when you're you're just you're in a spot where you've been in the hospital and you've got hospital psychosis, the whole family, and yet you have to stay on top of things. You have to stay alert and awake and aware. And engaged with your child. And it's kind of like that's one of those topics. Like, how do you keep going? How do you do that when you're when everybody's worn out and yet everything is still a priority? You have to stay very engaged. I think that's one of those kind of sensitive topics. Yeah, I agree. I think there's there's a lot of topics that people do want to hear about, but it it's hard unless you're in the community and you have other parents that are going through it. Like I remember for me it was always I always questioned like, well, how do children die? Like, what do you mean? Like, where did they die? Like, how did they pass? And it wasn't until, you know, I experienced that. And then I got to talk to other parents, and then you realize how similar some of those moments are, or just all kinds of questions where you're just throughout the journey and you're like, Is it just me? Is this just happening to me? and then you talk to someone and they're going through the exact same thing and you're like, my gosh, like this is normal. Like this is this is this part of the journey. So I I agree. I am excited for Lumina to be that place where anyone can come and just we can talk about these really hard topics and then relate to each other and you know, let people know like, hey, there's a huge community of people that have probably experienced something similar and c we can learn from each other. So Yeah. I agree. And I think just to be able to for parents that are walking that path that sort of is becoming end stage, unfortunately, I think just knowing that it's okay when you have the medical team's, you know, thumbs up to take that trip, that you take that trip and you do it guilt free and to seize every single moment because You don't know when it's your last. And all of a sudden you're in a different space in your journey. You're in that space that says you're squeezing an entire lifetime into a short amount of time. And I'm so grateful that in our situation, that we we took every moment, we capitalized on every moment that we could. And by the grace of all of these wonderful nonprofits that are out there that that want to offer help and offer you. go on a family trip. you know, initially we didn't want to do that because it made things feel final, but that's the space where that's where we were. And I'm glad that we did a perspective shift and said, no, we want to do, we want to do these things. We want to have these family moments. And I'm I'm just so grateful that we did it. So for anybody else who's in that sort of situation, you know, from our shared experiences, I I just would want to encourage to just If you're able to do it, do it. Get out there. Make the memories. Yeah, I agree. And I think that's what Lumina is about. I don't think there's a right and wrong way to do the journey. And you know, we're not just we're there are so many journeys. Like we're gonna have people that survived and we're gonna talk to them about like how life is now. We're gonna have people that are in the journey. We're gonna have people that are beginning the journey. We have people that maybe have not even gone through the journey. Like I just feel like, you know. There is no right and wrong way. It's whatever's right for you. It's whatever's right for your family. And so but I think bringing those people on and giving them a space to talk, it's just gonna we're all gonna learn from that. And it and I think that's what I'm like I get chills thinking about the fact that people will have a place where they can come listen to these various different ways to do the journey and maybe say, okay, well now I don't feel alone that I made this choice. Like, so I I'm I'm very grateful. I'm I'm grateful for you and our angels and really the entire community. I don't I don't think I would have survived the journey without the community. And when I say community, I mean the people that comment, the people that you know you can two a.m. in the hospital and you're like awake and you're just so out of it. And then you scroll on and you hear everyone's like, We're praying and we're we're lifting you up. It really isn't. I remember one time Carrigan was initially diagnosed, so we were very new. in our journey and I was we were getting ready to leave the hospital and we were standing outside and this mom came up to me and she said, Can I hug you? I'd never met her before. She goes, You just look like you need a hug. And she didn't know why we were there. She didn't know that we were a cancer family. And and as it had her her daughter had had cancer as well. And she said, I just know that look on your face of being so lost and what are next steps and all of it. And I just want to give you a hug and I just want to tell you I'm here. Incredible. It's so and and now I've been that mom for other moms in different ways, for other families in different ways. But coming into the fold, it was I was so grateful for that moment for somebody reaching out and saying, you know, I'm I'm here for you. And I I think that that the space can do that for for others. Yeah. I think that's what this luminar will be. I think it's I I hope people write to us. I hope people write to be on the show because I I just feel like we have so much to learn and there's so many things to talk about. So many things to talk about. Every time I get on the phone with you and we just talk about something, there's like a hundred other things, or there's just so many great people in the community. So I'm I'm really excited for this. so aside from the podcast, Tammy, tell me a little bit more about what you're doing to Continue Carrigan's legacy. my goodness. Well, it's you know, I I've formed the Carrigan Connection, which really is just a collective thought process at this point to oversee her scholarships, to oversee her research fund, and really any of the initiatives that that are happening in in her memory and her honor. And I'm selling our artwork. donating our artwork for her pediatric cancer initiatives, for the charities that have helped us. So that really feels good to be able to give back in her memory. And it's something that she and I had talked about, she said to me, because we often created together, she said, Mom, please promise me you'll keep creating and you'll keep drawing. And she said, I'll be right by your side, you know. so that was hard for me at first to do, but I've been doing that. And it's just been great to To give her artwork that can be auctioned off. One of the other things that we've just resumed is Carrick and Sunshine in a Box, her care packages that she had done. She had written a program for teens and young adults through the Strong Little Souls Childhood Cancer Foundation with one of her best friends, Madison Quinn. And Madison has really helped me resume that program. So I'm super excited about that. We've done our first three care packages that we're sending out to fighters and those packages are are tailored towards the their needs. Carrigan had done a Google Doc for them to fill out. So they're really very tailored to them. And I'm excited to be involved in that. And Carrigan's friends are helping me with some of those other initiatives. So and then continuing her advocacy work, educating others on sarcoma cancers, that was that was something that was really important to Carrigan. And at some point lobbying as well. You know, CureFest was very important to her. I know it was to Sasha as well. So being part of that community and continuing the lobbying work that our girls were doing. It's incredible. I remember thinking when Carrigan was talking about the care packages, and actually she texted me so many times, she's like, You've got to get Sasha to fill out this form. And you think like, my gosh, you have this. Child. Like I I and I knew she was a young adult, but like to me, she's like still your baby, right? So you have your baby, and she's battling this cancer, and it's so painful, and it's appointments and it's nausea, all all everything. And then she's making packages for others. Like it's unreal. It's unbelievable. These kids and and young adults and people who are battling are doing so much for others during their battle. again gives me chills. I get chills all the time. yeah. No, I it's incredible. And let's talk about what you're doing because you are doing some amazing things in the childhood cancer community. my gosh, I don't I don't even know if I did it the healthy way. You know, we just kind of jumped in. I think the grief was so severe when Sasha passed that like I remember I would like wake up in the middle, I mean, it'd be like three in the morning and I was just like shoot open, my eyes would shoot open. I'm like, I'm just like laying there and it's just like in disbelief that it feels so empty and so alone because your your baby's not there next to you. And so I just like would get up and just start I would go in her room and like put on her socks and like look at all her beautiful things and I'm like, what am I going to do? Like what can I do? And so it just really became about really two things awareness and a cure. and so, you know, thankfully with just my medical background and and you know, having specialty, a specialty business that did, you know, custom medicine, I said, you know, the kids need a lab. There needs to be a lab that brings them these cutting edge therapies and allows them to have access to it for free. We don't have $150,000. Most people don't have that kind of cash to go try a personalized vaccine or try a personalized therapy. And so yeah, for us it's gonna be a cure. It's to to to build this lab and get grants and get the grants to pay for the children to have this access for free. which is a really big project, but it keeps us busy. and then awareness. And this is this is awareness. Lumino podcast is awareness. a post is awareness. Getting on the phone with someone is awareness. And that's what our girls did. And we have to keep doing that. Yeah, I agree. I agree. Well. I mean, you're doing tremendous things and I think that both of our girls are up there looking down on us saying, Look at our moms go. I agree. Right. Time goes by, you know, time goes by to help you to get through the day because you're so busy. Yep. That's what I found is really helpful. You know, my husband and I were talking about that. The downtime is really is really challenging. And so you just have to stay busy. Yeah, I agree. As we wrap up, I know we this is like an intro podcast. let's just wrap up with what do you want Lumina to become? What would be your dream? I think for me, serving our community in in many ways that we've talked about today, I think there are a lot of things that we can do, whether they're big things or small things. like an initiative, like a caring calendar where we post upcoming fundraisers for a family, you know, just a clearing house for those types of events that are happening that are so important to families that can really make a difference in their lives. I think there's just a lot going on in the cancer community. It's really so grassroots. And I think whether we're posting about those smaller things or bigger things, I think that they're all going to be helpful in some way. And I think sharing our stories and then having a format for others to share their stories. And also just continuing to talk about Carrigan and Sasha is is, I think, incredibly helpful to keep sharing their light is so important. And when I said earlier on that it's really re-energized me, it it has. It really has given me things to think about and things to just come up with other ways to to help. And and our girls did that. They were helpers. They were the helpers. Even though they were fighters and they were fighting for their lives, they were helpers. And so for us to be able to be helpers in their memory and keep spreading their light, it's incredible. Yeah, I agree. I agree a hundred percent. And yeah, me too. I mean, I just I really want Illumina to be a community. There's so many times that I've been on the phone with you or, you know, another family, and I'm like, my gosh, I wish others could hear this because you hear something like changes, like there's stories that other parents have told me, and it changed completely how I live my life now. and so that's what I want Lumina to be, and that's what I'm most excited about. And again, like the lineup of people that we already have, some of these people are like, I'm in awe of them. I mean, absolutely too. I'm like, how? How did you do this? How did you? get through this and how are you here and how are you like it's it's amazing. So I'm super stoked. I am very grateful. and yeah I guess we did it. First episode. It's a right. We're podcasters. I do want our friends to email us. we'll put all of our information and as the podcast grows, like we welcome everyone. We welcome all topics and everyone like This this is for everyone. Yeah. Yeah, we sure do. And and thanks to everyone who's not only listening, but our behind the scenes crews that are helping us and helped us, you know, get off the ground as well.