Latest / Angel Moms Lumina Podcast / Episode 3, Part 1: Surviving the Unimaginable with Sarah Bartosz

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Episode 3, Part 1: Surviving the Unimaginable with Sarah Bartosz · Angel Moms Lumina Podcast

• Episode 3 Part 1 Final: Welcome back to Angel Mom's Lumina. I'm Tammy and I'm here with my co-host and Sasha's Angel Mom Julya. And today we have a very special guest, a guest with an unimaginable journey of love, loss, grief, and perseverance through it all. Hi everyone, I'm Julya, and I wanted to introduce you to someone who is very special to me. she has worked in cancer philanthropy long before cancer became very personal to her. And by personal I mean having her twin boy diagnosed with stage four neuroblastoma and losing him and then losing her husband to the late effects of cancer, treatment from his youth, going through breast cancer herself, and now serving as a light to help others access treatments they otherwise couldn't, including my sweet Sasha, and that's how I met Sarah and hi Sarah, thank you so much for being here with us today. Thank you so much. I appreciate both of you. and have long prayed for Carrigan and Sasha. And I'm just I'm grateful to have been invited and thank you for the beautiful introduction. my gosh, you're so amazing. I was like so excited just to have Tammy meet you. And then when we started the podcast, I was like, my gosh, everyone's gonna get to meet Sarah because you're you really have changed how I live my life. So I am not worthy of a statement like that. Thank you. no, she's told me. She has told me many times and how grateful that she is and and what you did for Sasha and their family. And I'm so excited that you're here. thank you. Thank you. I I as I said before we even started recording, I think somehow we're given this awful experience and this awful knowledge that none of us ever wanted. around childhood cancer, cancer and and certainly grief around losing a child. But I I think I've made it my mission to figure out the positive ways that I can use this ridiculous knowledge that I never wanted to try to make it better for another family. And that's how I will continue to live all of my days because all three of us have been through something we never imagined, something we never wanted. But yet if we can put some of this to use for somebody else, make their journey a little bit easier, find hope and and even find hope in the worst of circumstances, then it w won't be for nothing. And that's that's my goal. Yeah. Yeah, that definitely is exactly I think, you know, my goal and I'm sure Tammy's as well, is just being able to help even one person get through it a little easier. I honestly owe a lot of months that I had with Sasha to you because you allowed us to get on a therapy that really helped us. she felt some of her greatest some of our greatest memories of her being a bridesmaid and going to this beach was right after we got on the therapy. That you I mean, you just instantly helped us. Like I I remember I I literally remember texting you and then like I feel like I blinked and then we were there getting this treatment. So Yeah, a lot to talk about. I think this is gonna be a great episode. I did wanna get into so I know you did you did you had work in cancer before it really became something of a reality for yourself. and I kinda wanted to go back, you know, kinda go back to the beginning and like what got you into working in the cancer industry and then how did you meet John, you know, your husband. I so when I graduated, like every bright eyed college graduate with a public relations degree wanting to change the world, I took my very first job with the American Cancer Society. And it seemed very important to me. My mom was a breast cancer survivor, had a having been diagnosed very early at age thirty nine. And so it it was almost somewhat of a blur. I was ten years old. I don't think I really understood what was going on. and at that time she she just was in the hospital, I think, for a night or two and came home. She did not have chemo or radiation. So it was mom had surgery. She's fine now, but I remember her throwing this big, huge cordless phone, you know, when they were the size of a a giant brick and just throwing it and thinking, that is so not my mom. She's calm, she's lovely, she why why is this happening? And and listening in a little bit and and catching this. So to me, I had carried that with me. My aunt had then been diagnosed and thought, what better way to put this degree to use than working for the American Cancer Society? It just seemed so noble. And I remember thinking at the time, I am going to fundraise to help fund a new treatment. That is going to save someone's life. Because isn't that what every bright-eyed 21-year-old would imagine? And and that's how I got into this and and stayed in this world of fundraising because I I truly thought this was a noble way to put, you know, something that meant something to me and put this degree to use. So it seemed somewhat ironic when I met my husband John. And he was a cancer survivor. I met him a couple years after starting with ACS. And he was a cancer survivor from his 20s. So he had an adolescent young adult cancer, AYA, something I had never heard of before, liposarcoma. And you know, what is that? What is the prognosis? All of these things. And thinking, my goodness, I mean, this is this is just meant to be. Because I felt like together we were we were gonna solve this problem of cancer. he was not in the cancer business per se, but he was a survivor and we knew that there would be long term ramifications and side effects from the treatments that he received, but we truly felt like we could conquer this together. Gosh, that's just amazing. I can't believe how much touch your cancer had touched your life before it came to your son. By 22. I mean, by 22, I went, my goodness, my mom, my aunt, my now person I believe that I'm going to marry. And and certainly by twenty-four, I was married and thought, okay, we we'll we'll figure this out. And I I truly believed that and even after Jack was diagnosed, but you know, John's cancer forced us into in vitro to be able to have these beautiful kids and because of his health history and he was so concerned always about I do not want these kids to have any chance of getting this cancer that I had. And his was one of those, you know, rare, like, like pediatric, adolescent, young adult. There was nothing that he had done wrong in lifestyle or anything like that that caused this. so we just proceeded and and we knew. We knew early on that he would need a kidney transplant at some point as a result of the radiation that he received. We knew that we were going to need fertility help. But we just went forward positively. And when we found out that I was pregnant with twins and then found out boy girl twins, I mean, we just felt like, okay, we've been through these terrible things and this is a reward. This is going to be amazing. We just were beside ourselves with joy to welcome these these beautiful twins. My goodness. And two, you know, I think about, you know, what a blessing it must have been for John to find you. Because, you know, it's not easy to go through all that and be able to find someone that you can like real you relate with and share. You know, not everyone is just there's we're all so different, you know. So I think having you having come with that history, you know, I'm sure was a huge blessing to him to have found you. It well, thank you. I I think that we felt like there was something that was meant to be because we both had this experience, albeit extraordinarily different, but we had this common experience that that we could share. Though I do remember many times early in our marriage or early in having kids when I would worry about something seemingly silly, mundane, and he would say, This is not worth worrying about. And I just remember that even causing some of our greatest disagreements, where I would say, not everything is life and death, but it can still be important. And and of course I appreciated life and and watched John struggle with long-term side effects, but would say, okay, we can't look at everything as a life and death problem. And this can still be stressful. So you know, I don't even know what to say about that because then to have a child diagnosed as I am working for the American Cancer Society, literally working with a family who had lost a child. And at this point in my career, I was focused specifically on funding cancer research only and was doing major gift fundraising for ACS to fund Research projects that would not otherwise be funded. So I felt like I had literally narrowed in on this niche of I'm I'm on the course. We're going to solve this problem. So I was working with a family that wanted to fund a pediatric project. And they were doing a huge fundraiser here in my home state of Wisconsin. And I had matched them with a fund with a researcher who was awaiting funding for a pediatric cancer grant. And I had this research researcher flying in, and I was picking the researcher up on a Friday night and driving them to this big event that was happening on Friday and Saturday. And my son Jack was now just weeks shy of turning four. He and Annie were truly these perfect twins, these little blonde, amazing little rays of sunshine. And we just bought the sun and moon set on these kids because they were they were perfect in every way. And he had been sick all week with seemingly the flu. And I just remember having that mother's instinct, as the two of you well know, this motherly instinct of something being wrong, of something being far more serious than just a preschool bug. And everyone assured me it was September. He had just gone back to preschool with his sister, and he's got a bug. It's something that you don't worry, but these fevers and waking up. And then he was waking up at night complaining of pain, but pain that he couldn't really express where it was coming from. It seemed like it was everywhere. And I remember walking into my husband's office on Thursday. Of that week, Thursday, September 22nd, and saying, What if Jack has cancer? And he said, Sarah, you're bringing this project home. I know this is really hard for you. This is really hitting home for you, working with this family that lost a child. He said, It I don't worry, you know, don't bring this home. I said, Okay. But I had already been in touch with the pediatrician a number of times. So then on Friday, we were up. All night long. And I did not get a wink of sleep and thought, I have to call the pediatrician again. And he said, I think you need to go to the ER. Maybe he has appendicitis. And I thought, okay, there was part of my brain that went, my gosh, that would be horrible. What if he has an appendicitis and he needs surgery? And my gosh, what am I gonna do about this work event? And then the other part of me going, What if this is not? Something that can be fixed with an appendectomy. And I called John and I said, We're at the ER. He came immediately. And we went in for this CT scan. And there was something about this mom that was the tech in the room with us. And she did nothing but smile at me. Nothing that was medically inappropriate of giving me any indication. But there was something about the way that she looked at me and the way she smiled at me that I said, something is horribly wrong. Because that was a mom to mom I am so sorry smile. I can't explain it, but I think the two of you know it. Yeah, I went through that with Carrigan too. Oof. The doctor circled for her. circled the swelling on her knee. and this was after a year of misdiagnoses, and she said, I'm thinking cyst, but you need to get to the ER right away and and have a scan. And it was just the look on her face. I just, I just in that moment, it was like you said, it's a look. It's mother to mother. And again, there's not you can't even explain it. I can't say that there was anything wrong because she literally smiled at me. Yeah. But there was something in her eyes that made me realize that she was saying, I got you, mama. Like I'm praying for you. Yeah. And I feel like now maybe I give that look to somebody. And I don't mean it to be negative, but it's that mom to mom, I've got you. I'm so sorry. I wish there was something that I could do. And maybe that takes me back, Julya, to your text of getting a phone call, text from you, that I you at that moment you weren't looking in my eyes, but I was giving you that exact look of I got you, mama. I I'm here and I'm gonna do everything I can to help you. You were exactly like that. Cause like with me, everything that I do even now in life, I do it very fast. So if there's something that I want to do, I just do it. I don't kind of put it off. And I think I remember when I was given your contact, I was like, I'm just gonna text her right now. And I think it was like a weekend, it was something I remember I like questioned whether I should text you right now, but I was like, I I I've got to do this, you know, for Sasha. And I remember you wrote me back and I think you were like in a big event and you were like, I'm in a big event, but like I got basically you were like, Don't stress, like I'm in a big event, I'm gonna take care of this. And it and I know exactly that feeling that you're talking about because I would see so and not everyone behaves like this. Like even when Sasha was fully already diagnosed with cancer, there are some medical professionals that treat you so tenderly with their eyes and even how they treat you where they're just they have so much compassion for what you're going through that it's like, you know, you're something's about to fall off the bed and they're like, Let me get this for you, let me move this shoe, let me straighten like Let me just do a little extra for you because I know what you're going through and it's I I I get that. That's I I have chills. I think it means a lot to us too. And and if there's a message to share, you know, in general for any person, is that if there is someone that you know or love going through something hard, going through something awful. Or that they're struggling with, even if you don't understand that, it's just that little extra thing. That tiny offer of I got you, or not even I'm here for you, but a I can do this. Yeah. Let me do something. Just knowing, knowing someone is, I'm praying. I'm here. I think that's all that. People can do sometimes, but it it does mean something to us. Sure does, yeah. That look can mean something. It it can mean you don't know me, but I'm praying for you, and I love you, and and I hate that you're going through this. And yes, there is one look that can say all of that. And yeah. And you feel less alone in that moment. You feel less alone. You sure do. Yes. And so Following that, when somebody walked in and said, We're moving you up to HEMOC, we think he has neuroblastoma. He's got a large tumor. I mean, part of me went, Yeah. I but I remember at that moment going, Is it a Wilms tumor? Because this research project that we were funding was for Wilms tumor. And I remember thinking, I'm just gonna divert the researcher and I'm just gonna bring them right here. Maybe this is and they said, no, this is not a Wilms tumor. This is likely neuroblastoma. My goodness. But I mean, who can even script that? That I was supposed to be at a pediatric cancer event and had to call to say I can't make it because my son's just been diagnosed with cancer. So I mean I I that's that's not even in the craziest lifetime movie. Yeah, I mean that we'd go, my gosh, how made up is that? No, this literally happened. I think that's what makes your journey so unimaginable. So, you know, we always talk about how unique every journey is, but it's just such a level of unimagin. Like to lose first of all, to have a child go through cancer is unimaginable. To lose a child to cancer is like you you it's the worst thing that can happen. But your story evolves even more. There's so many levels of un I get chills. I I wish you guys could see this. My goosebumps. it's just so unimaginable. And I think that's what makes you such a strong human like such a like your your presence is so strong for me because knowing what you've gone through and the fact that you're sitting here right now and you're able to do so much in the world, it's again unimaginable. So I do want to ask because even the, you know, cancer families that are listening in and people have gone through cancer or people that haven't, even if you've gone through cancer, no journey is the same. And I am I'm I'm genuinely just curious. I mean, you just you have twin babies, right? How like and you went through this for seven years. Like what did that day to day look like? How did you do that? That's very, very hard to do with twin babies. It was it it it was family, it was friends. I I don't know what I would have done. I think John, you know, in at once this this extraordinary heartbreak that we both felt but I I can't imagine I I know my motherly grief, but in his paternal fatherly grief Of having this child knowing that he's going through this and is going to go through this. But then the the personal knowledge of what this journey is going to look like for his not even four-year-old son. I think the heartbreak there was extraordinarily horrible for him because he knew how Jack was going to feel. He knew these high-dose chemotherapies. He understood this. you know, giant surgery. Even though these cancers were quite literally not at all related, there is no genetic correlation. It was lightning striking twice. These two cancers have not the same mutation. There is no know like genetic disposition that caused this. And I think we just sort of Went, how can it be? How can lightning strike? And yet, at the same time, because as parents we have to hold on to hope, we then felt, okay, he is going to be okay because John has his knowledge and his database of oncologists and experience. And he's going to tap all of his resources, and I have mine. I have My knowledge, my work. I have the entire, you know, research team at the American Cancer Society, like, okay, we're gonna solve this because we felt like we had enough base knowledge of we will cure him. We will figure out how to do this. Because we weren't completely blind, which most everyone else is. What? Pediatric cancer? I've never heard of this. Anything. So I think we felt optimistic. We tried to share that in turn with Jack and Annie. I think John, you know, in some respects was able to say, Look, I was diagnosed with a cancer that was told it was incurable at one point, and I'm here. So that reassurance to both of our kids meant a lot because it wasn't a promise of something we didn't know anything about. John could say, I've been here, I've done this, and I'm still here. So We're gonna get you through this. We're gonna get our family through this. We all relied on that. Yeah. So let me ask you ladies this and I think the three of us can comment. I don't know that we've talked about this actually on the podcast yet, Tammy, and please if it's too raw of a subject, we don't we don't have to answer. But I am curious, like for me with Sasha, you know, because all three of our babies died, I actually I was like you, very hopeful. To me, I still am that way, even though she has passed. I am that way. I still think Ewings can be beat. Like it had that hasn't ended because Sasha is not here. But for me, the crazy thing is, up until the night before when the doctor walked in, I think it was like 8 p.m. and he basically pulled us out into the room and he said, I think we have hours. Up until that, I did not believe Sasha would pass. Like at all. And I think back and I'm like, what was I how? How did I not believe that? And I and now I'm I do think it was a blessing for me because I can't imagine going back and even knowing a day in advance. Like I don't think I could have handled knowing it for longer than like the couple hours that I was given. my question to you guys is, and Sarah, you can start, is if it's okay to talk about like, did you know like in advance like how how how did you when did you know he was gonna pass? I Think I knew I I first I want to say I still have hope like you because I I need to say that first. I still have hope. I will always have hope. I believe that we can beat childhood cancer. I think we can create better options, better treatments that will help kids survive and thrive. And that's my big thing because Jack and John are both considered survivors. They both survived more than five years. So survival has to mean thriving. it has to mean being able to live beyond ten in the case of Jack or 47 in the case of John. So I still have hope. I have hope because I know that they are giving that to me. And I know that that is the piece that I'm gonna be able to tell them, or they will already know when I see them again. And they're gonna say, You did you did help. You did something and and so I know that. So I just wanna say from the outset, I will always have hope. I have to. I think I knew that Jack would that Jack would die the moment he relapsed. And even though we went through, my gosh, scads of additional clinical trials. And every one of them brought me new hope. But at the time we we weren't where we are now. And I think there's more hope for neuroblastoma now. I know there is more hope for neuroblastoma now. I I don't think I know that. But at some point I remember putting Jack's twin sister Annie into therapy and finding a therapist specifically for her. And she was six or seven. And I remember people asking me, Why why is Annie in therapy? And I, you know, kind of an eye roll, but like, Hello. shouldn't she be? She's seven. Her twin brother and I said, Her twin brother has what is right now an incurable cancer. And I'm not saying that we have given up, but I think we need to have some support on board for her. So that if at some point the worst thing happens, she has someone else outside of the family that is is ready and knows what's going on. Best decision I ever made. because there was something in the back of my mind that went, I I I I don't know how this is going to turn out. And there were times during Jack's battle and his many clinical trials that John faced a setback. And I remember, I mean, a time here in Wisconsin where I had Jack in the children's hospital and John in the adjoining adult hospital. And I went through the underground tunnels to see to be with the one who was in better shape. So there there were moments of that. There was another moment when John needed surgery in New York and Jack was being treated in New York. So I flew Jack out and brought him home and then turned around within twenty four to forty eight hours and and flew John out and was out in New York. So Family family helped. My family stepped in, my mom and dad. They were just here and and took care of whomever it was that was at home that needed caring for. And at some point along the line, it was Jack, Annie, or John. So and then it became Tommy, my youngest, who's eleven years younger when when John was was then dying himself. But and I apologize, Aiden, I've given you a job here 'cause you're gonna have to do some cutting. no, this is all so important. But you can you can cut. But no. Back to your I'm on the edge of my seat. I I'm and I know you and I know your story. And the things I mean, this is this is why it's so important that we have these t conversations 'cause I actually didn't even think about doing therapy while Sasha was Had I done that with Sebastian, I think that would have been nice for him to have someone so that if God forbid the worst happens, he has someone that he already trusts and knows. And so again, this is the piece where maybe there's a family listening right now that's in a similar position. It is. I was thinking that too while you were saying it. I didn't think outside of our situation enough to to even think that far. And I don't know. I I don't know where that came from. I just know that I knew she needed support and she was watching her mom and dad and brother come and go. And though she was never displaced from our our house and and no criticism to parents who have to say, look, you have to go stay with grandma grandpa or aunt and uncle or friends, whatever. We were blessed to be able to try to keep things normal, but the reality was it wasn't normal. And so, in retrospect, I really wonder, was that the best decision that she was at home? But There was a rotating door of who was coming in and out. And it was always family. But at one point she said to me, the only person that was ever a constant for me was the dog. And I went, my gosh, you know, she's right. The dog was always there with her, but every but the adult rotated and her brother was in and out. I I think about when when did I know? And I would say the day that The doctor pulled me aside. We took Jack on a one a dream vacation to Hawaii. We had already been, it was the best vacation he had already been, he had been on. And he said, I want to go back, I want to go back. And so we planned and we got him back. And we knew our options were sorely, sorely evaporating as as quickly as they appeared. They were disappearing. So we got him on this trip and he was very sick. And and even the oncologist in in Hawaii, I have an affinity for because we never saw him for anything but you know like blood and platelets that we had to keep transfusing during that time. But he he again gave me this really loving, knowing look. And I remember thinking, I I've seen that look before. Yeah. And it was the day that Jack was diagnosed. And we came home. And John didn't even come with me to the hospital. We went off to the hospital to give Jack blooded platelets. And we we made it through the trip. I don't know how he made it, out of plain sheer will and hope for us. Nothing about this trip was pleasant for Jack. But every time I asked him if he wanted to go home, he said no. He wanted us to have fun. And he wanted us to have a good time. And so we came home. And it was the day after we got back that the doctors they pulled me outside the room, Julya, just like you, and said, Sarah, this he is he is dying. He is actively dying. And I was there by myself. I just remember sitting there by myself and going But John's not even here and I you know, bringing in palliative care and I'm I I I sitting on chairs in a room and saying he's actively dying. I'm going I I think Why what did I think? I don't know. I don't know what I thought other than how am I gonna survive this? and having to go home and stay positive and happy and take Jack home and have a conversation through a fake smile and say, John, we what are we gonna do? And and try to figure that out and yes, order a hospice and start bringing pain management to the house, but What are we gonna do? How long will we transfuse? How long and we had two weeks. we had two weeks. but we had two weeks. It makes me wonder 'cause, you know, there's so much that these children know that we don't even realize that they know. And it makes me wonder like, you know, like you said, like the trip was like f for you guys cause he really wasn't feeling well enough to enjoy it like he should have, but You know, maybe for him it was like, you know, after you're in the hospital for all this time, maybe it was like just to see his family in this beautiful destination. You just have no idea what's in their their little amazing, advanced, you know, s brain and soul that has grown so much and it's We watched the Olympics. I remember it was Summer Olympics of twenty twelve. And we watched the Olympics. Thank you. my son's girlfriend is the best. I wish I could hand some to you, ladies. I didn't bring a box. How could I not bring a box of tissues for today? I was literally looking at I was like, I think we're gonna wipe with the stuffy that's like on the desk because here Julya, I'd hand it to you I think they could I know, I wish I could hand you one. I I it was I I realize now and I think I I carry that with me. I carried guilt for a long time. We never should have taken him. We should have gone home. You sh you you should on yourself. And and I've realized now that we had to do this for him and that the beauty in so many respects the beauty of this is that I was I was pregnant. I was six months pregnant with this miracle, unexpected baby that yes wasn't completely unexpected because he had been frozen for 11 years from the in vitro that we did to have Jack and Annie and he was conceived on the same day and frozen, suspended in time for 11 years. And there was a therapy that Jack was able to get in early 2012 that we had helped to fund with our fundraising efforts. And I thought, okay, John and I went, this is it. Like We're gonna finish this movie. We're finishing this this crazy movie. Jack is going to survive, and we're gonna have this child that's been suspended in time. And this is the moment. And so there I was pregnant. And it was the one surviving embryo. And Jack knew the moment we had said, Hey kids, we have something to tell you. And and Jack's health was still good at that point. And he went, You're pregnant. And we said, Where would you come up with this? You guys are, you know, ten. And he went, Yeah, there's just something different about you. And you've been sitting down way more, Mom. You don't ever sit down and relax. And I went, well, that's true. And he said, You've been sitting down more. And he said, But I I can just there's something. And I almost feel like again, it was this angelic he knew something that I don't know if he even his physical body or mind knew. He knew something and he said, It's gonna be a boy, and his name is Tommy. And I went, I think this baby's gonna be a girl. And I so I was pregnant, and at that point we did know that this baby was a boy. And Jack and Annie came with us to the ultrasound because we saw Jack's health declining and thought, okay, we need him to be part of as much of this as possible because why try to hide it? He clearly is intuitive. So we brought him and he was there. And I couldn't do the activities in Hawaii. I wasn't trying to surf or hike a volcano or a beautiful waterfall. I was six months pregnant. So we were the perfect pair. And I don't I think it relieved Jack of any guilt. that he felt about, gosh, you know, now they have to keep deciding who's staying back to be with me. No. Mom was there. And so for me, the Olympics, my gosh, every time I just think about this time that I had, we watched the Summer Olympics. And that time with him was this little special time sitting on a sofa in a beautiful place. But Just being together. and it was that Olympics where they played this Philip Phillips song, Home. And I just remember Jack joking about this name. Like, who would name their child Philip? Aren't you glad that I don't want to name the aren't you glad our last name isn't Thomas and his name isn't gonna be Tommy Thomas? And just that he still was funny with this song home and it it will remind me of Jack and that time forever. Because I know that Jack has found his home. And I know that at that point in his life his home was me and our family. And someday we'll all be home again together. And until then, I have to hold on to the hope that Jack had. I have to hold on to the hope that John had. And it's a very precious gift that they have given. to me and to Annie and to Tommy th that we are the keepers of this hope now. And we're the keepers that have to share this with other people so that they can find hope because there is hope. And we can give that to other people so that they can have a different outcome. Yeah. Yeah. And you do, and you have. You gave it to us. You gave us months and you gave us hope. You gave us hope and you gave us months. And every time you do something new, like a new therapy, it does give you hope because it's something new and you think maybe this is gonna be it. And so I think Yeah, I think that's why a lot of us kinda hold on till the very last day and feel like we are gonna make it. So Tammy, I think of Carrigan at Curefest a year ago. I and when when did you know? When did she know? So we knew Carrigan survived for seven years and we knew for six years that she wasn't going to be here. And when she relapsed, her scans were late, they were misread. So we had a lot of issues in our hometown hospital. And then that's when we headed to Boston. And so our last podcast, it's something that Julya Julya and I had spoken about the differences in that initial treatment and how important it is. And My husband and I say all the time, if we'd only known enough about sarcoma cancer, if we'd only you know, we didn't have AI back then. You know, we we had done our research, but we had consulted with Boston and they said, you know, the initial frontline therapy is the same. I was trying to work full time and I was a building inspector and a hearing officer, so a lot of my job I couldn't do remotely. And my husband was trying to work full time as well, and they said, You know, stick close to home. And so we did that, but it it it really failed us. And our hometown hospital didn't think that it had metastasized to her lungs because when it does that, it changes the prognosis greatly. And Boston said immediately, not only is it back in our leg and we have to amputate above the knee, but we think it's in our lungs. Let's get in and and ex at least explore and and try and rule it out. And of course it it was in her lungs. And so we knew early on that. We were in that incurable phase. And I remember Carrigan said, We're just going to live meaningfully and I'm going to have an impact. And she was a pediatric cancer advocate before she got cancer. And so that was one of those things too, like the irony, certainly nothing like your situation, but it was one of those where the the children's hospital where she volunteered and used to do toy drives for. She was now going in as a patient. And I remember her first day inpatient. She said, It's okay, mom. I'm just coming in through a different door for a different reason. It'll be okay. And but we never lost hope either. And we knew early on that she was incurable. And she said, I'm gonna make a decision to live like I'm living. I'm not gonna live like I'm dying. And it's such a different mindset. And I don't know. How at that point she was 19 years old that she came to this mindset, but she never wavered from it and she never gave up hope. And, you know, at one point she had merchandise. You know, the young people all have their merchandise, which I love. And initially she designed it with the mountain. She's named after Mount Carrigan, and it was Climb for Carrigan. And that was great. And then the next one was the butterfly that she designed and it it had her name on it. But each design became less and less Personal. And the last one just said, I'm fighting for a cure. And I said, You're not going to put your name on it. And she said, You know, I've realized in this journey it's not about me. And for a long time I I haven't really been fighting for me. I've been hopeful for me, but I'm really fighting for a cure for who's coming behind me. And that really struck me. that she really was fighting for a cure and had hope. And so that's why my husband and I Like like the two of you, we keep going for that hope for others because you can't lose hope because without hope we don't have research, we don't have funding, we don't have support, we don't have less toxic treatments. And without hope, all of that is lost. And so that's why I've worked really hard this month. This is our first childhood cancer awareness month without Carrigan. And it's it's been really challenging day after day. But I thought If she were able to do it and and be so impactful and do it while she was so sick, then who am I to not do it in her absence as a grieving mother? I can I can do this. And it was challenging, but I continued and I did it. And it's important. And I'll always do it. I will never not be part of this community in some manner. And that's why when Julya wanted to do this podcast, we'd been talking to each other and Just having the same feelings and supporting each other. And it just sort of developed organically out of that hope and that wanting to help others. And that's why it's so incredible to have you as our guest, to have you share your your story of survivorship and all of the things that you're doing, because it's really a survival story. It's it's incredible what you and your family survived. I I it is a survival story. Thank you for saying that. Sometimes I don't give myself enough credit for that survival story that I'm I could be doing more here or I could be doing more there, but it it is. And I I know when people say, I don't know how you do it, and we've all heard it, we'll continue to hear it. I just think, Well, I don't know how we do it either. But we know that we have to. And and we are given a choice. And that's the other part of it that I look at. I I I could choose to pursue a different you know, career. I could choose a different path. I could choose to ignore this or not talk about it, but that that's not who I am. And I choose to stay in this and I choose to talk about this, which I will do forever. Because it will make a difference for somebody else. Somebody's survival story won't be my survival story. And and I'm need to remain proud of my survival story in all of this. And I have regret that will never leave me about losing them. And could I have done this or could I have done that? But I think one of the things that John taught me that I I carry with me every day is he would say, Sarah, I would say, What about this? What about this? How are we going to make a decision about this treatment for Jack or that treatment? And what if we choose this and we should have chosen that? And he would say, We're going to make the best decision that we can at the time with the information that we have. And as you said, Tammy, we didn't have AI, we had Google and, you know, late nights on the internet, which was still, you know, the wild, wild west. It was. Of it wasn't the World Wide Web, it was the Wild, Wild West. It really was. And and searching and and talking more than anything, talking to other parents and and reaching out that way or following other people's blogs to glean information so that we could glean, okay, this happened to them. I mean, you couldn't just search this or or plug it into AI, but he said we were gonna make the best decision that we can on every given day, and then we are not going to look back. Because there's always going to be a new breakthrough. There will always be new information. We're using what we have right now. And I have carried that forward with me. And now regarding both of them, and even myself and the decisions that I've made about my treatment, or even just life in general for my kids, for Annie and for Tommy. I'm going to make the best decision that I can now as a single mom. And figure this out and say I won't look back. I'm doing the best that I possibly can.