Latest / Angel Moms Lumina Podcast / Episode 3, Part 2: Surviving the Unimaginable with Sarah Bartosz

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Episode 3, Part 2: Surviving the Unimaginable with Sarah Bartosz · Angel Moms Lumina Podcast

• Episode 3 Part 2 Final: It's insane to me to think about because when you lose your child, you there's no one that can really understand what you have just gone through. Even your parents, people that have been there right next to you, they don't understand. And it's like to have that person that was there with you, your husband, or somebody that actually went through it with you, and then you lose them and now you're having to grieve two. It's Unreal. It is Sarah, I don't think you realize how special you are. I mean, I know you're used to yourself, Sarah, but I'm telling you, you are you are a gem, but the main thing is you're a gem that has stayed. You know, I think I think everyone does grief so differently. And being a new you know, a mom in the community of grief now, you realize like I have friends that lost their kids almost around the same time, and we're all so different, like Tammy grieves one way, I grieve another. Other people don't leave their room. Some people go crazy and clean every little thing. So I do want to ask you, because you had, when Jack passed, you you you were you, you were pregnant, you had John, and then you had Annie the twin. How different was the three grieving processes, or did you kind of align in how you guys grieved? No. Like what 'cause you took care of you you guys took care of Jack for seven years. That's not a year or two. I mean A year or two, three is so intense too, but seven years, that's a ha ha what happened? what happens the next day? How how? How did you guys manage that? I don't know. I don't I don't remember the next day other than I I think in some respects, I I'm not sure if you would both agree, but there's a relief for there was a relief for Jack. He wasn't suffering. And I knew he was perfectly healed and in no pain. And so that brought me a tiny bit of comfort because I know how much he struggled for so long. I think for us it was how do we do this? And now we're home. And we were all three of us equally as conscious about not about wanting to make sure that. This baby, Tommy, was going to know how loved and wanted he was. And so I think it forced us to try, and I don't want to say get back to normal by any means, but figure out a new normal because there was going to be, and there is never a new normal, but figure out who we were now because it was going to change so dramatically again. When this baby arrived in November. Annie was going back to school. it was the end of August. And so she was going back to school, and we said, Okay, well, let's go to back to school night. I mean, literally two days after Jack passed away. And I think it was a fog. It was the fugue of we don't know what else to do. Are we just gonna sit here and stare at each other and cry? Or we So we mobilized and walked into the school, and I'm I apologize to every single person that saw me that night and saw all of us because they must have gone, what are they doing here? And what do we say? And the reality is there was nothing to say. Just hug us or that's it. Give us that knowing that smile. but we we got Back to school, we were also planning our fundraiser, our normal fundraiser that Jack had been part of. and so we started in 2009, so we'd had three events, and the event was coming up in September. So we just kept on with the plans, and that also helped us in some respects. And I think everybody went, whoa, what is this? What is this fundraising event gonna be like? Because we've got a pregnant mom, a family that just lost their child, who this is named this event is named after. And we hadn't even had the celebration of life yet. that was coming after because I just said, Okay, well, first we'll, you know, finish this event. And so, you know, God bless all of our friends that again, friends and family that step in. And are there, are there to help, and are there to pick up the pieces and say, Okay, I have no idea how many people must have rallied behind the scenes to say, We need everybody, get to the event, like we've got to help them. And so that helped. I think focusing on the celebration of life and making it sure that it was happy and joyous was another piece for us. And then John took Annie on a a little trip. out to California to see his alma mater and go to a football game and say, we can do this now because soon there's gonna be a baby. It was trying to be trying to be positive and and we all had to grieve in our own way and very, very differently. But yet we were still grieving for the same happy, joyous person. And so that brought us together because Jack never complained He wanted everyone to be happy. His quotes are all over our house. People, you gotta be happy. People, just believe. He would say, People, you gotta believe. He said that all the time. And so we would go, Okay, people, you gotta believe. And he but he has this quote When you're sad, be happy. And when you're happy, be glad. And it's so simple and yet for us is so profound because it's the truth. When you're sad, we you have to find reason to be happy. And so how could we not look at this quote all over our house and say, We have to do this for Jack? And Jack's favorite color was orange because he said it was the happiest color. How can you look at bright orange and not be happy? It's a happy color. It's The color of the sunrise, it's the color of the sunset. It's happy. Okay? So I think I wore and will always wear as much orange as I can possibly find because it's a happy color. How can he not be happy? How amazing. How amazing is he. It's just like you wonder he's going through so much and he's over here lifting people up. It's absolutely incredible. That's that's the thing. It's like when you're in this cancer community and you're in it long enough to see so many people and you stay in it like as deeply as we all are, you're just like you see these children, you're in awe. Like in awe. I just had a friend whose son passed and he was so young. And I would text her and say, I have never seen such a young child have such a his eyes were like an like a little grandpa, the way he was holding his siblings, the way he would look over. And just through pictures. And I'm just like, there there are adults that never get there. They just never never get there. And it's just like what a blessing that we were the moms of these incredible Kids, it is a blessing. You took the words right out of my mouth. I was just gonna say, what a what a gift that the three of us were moms place and still make the world a better place. And that's the piece of this that you know, as a 14-year survivor of grief as a parent who's lost a child, I'm I'm well ahead of the two of you, and I will say the Opportunity to stay in this world while some people have argued, Sarah, get out, it's too hard. And I'll say, but you don't understand. Because every time that I get to talk about Jack or a memory and talk about Carrigan and talk about Sasha, we are making new memories with them. They might not be here, or we're not making this fabulous memory with them. But we're still able to talk about them. And thus I am making a memory with Jack. I am making a memory with Sasha and Carrigan and the two of you now too. And what a privilege it is to make memories with you and these beautiful souls. And that's how I I truly feel about this. Because I can say, gosh, I got to talk about Jack today. And we got to talk about Carrigan. And we got to talk about Sasha and what a gift that is. Because we're still their moms. And I'm so blessed. I'm so blessed. This is the worst community to be in. But there are the most wonderful people in this community and in this grief community in general, are truly amazing, beautiful people. And so I just have to look and say, what would Jack say? He'd say, What a gift. What a gift this life is. Tammy, don't you just love her? I'm telling you. I wanna I wanna squeeze you, Sarah. I wanna squeeze you so. She was already on our radar because you knew my Carrigan. So that just my heart is so full. And the fact that it just it brings me so much joy that you knew Carrigan and you knew her at Curafest. And and it brings me so much joy that Carrigan and and Sasha were friends. because we're all connected. We're all connected in some way when they're here. Yes. And now we're connected even though they're not here physically. Like you were saying, we're talking about them, we're doing things in their memory, we're giving others hope. And it's just it's there really is still beauty in all of it. There there is. without question. And that's the part that I I think bothers me the most about this. Where when people say I don't want to mention Jack. I don't want to make you sad. Okay, there is never a second that I am not thinking of him. Yeah. And it's not, dictating my every move. But do does a a mother not think about one of her kids at ever with every breath? Doesn't happen. So whether they're here on earth or in heaven, we're still thinking about them and we're still there. Their moms. And so when people say I don't want to mention them because I don't want to make you sad, I'm going, No, saying his name is the greatest gift you can give me. Right. And the people that send the picture of the orange sunset with no words. They just send a picture of an orange sunset with an orange heart. I'm going, You just thought of Jack and you're thinking of me. Thank you. Greatest gift that you can give me. Yeah. Is is that's actually really good advice. Yeah. And I feel like the universe helps us because I know when I and I'm I'm only nine months in of losing Carrigan, but I have these days when I just need to feel connected to her and I will say that. I'll say it out loud. I'll say it to myself. I'll think it. And then somebody will send me a video that I haven't heard her sing somewhere. Last night somebody said, This is my granddaughter and Carrigan was singing a a song from Frozen to her at an event at the Elks at a Christmas party years ago. And I hadn't seen that vantage point. I knew she had sung that song, but and the all the little kids were crowded around her singing with her. And it was just such a beautiful thing. And it's i I just needed that. And and there it was. Somebody just thought, Hey, I'm gonna send this along to to Tammy, this memory that I have of Carrigan. And you're right, it's beautiful. And I and I hope that that will always be. It it needs to be. And and that's why as a as a professional griever at this point now, I sure are say it say with all seriousness, but also with an edge of sarcasm, which is a coping mechanism. Yep. for me. But you know, I will say it it doesn't go away and it doesn't have to go away. And a picture that someone might share with you every year doesn't mean any less fourteen years later. Saying their name doesn't mean any less, no matter when it is. So please, we have to keep saying their names. I am never going to not say Sasha. I am never going to not say Carrigan. I'm never not going to say, you know, how are you today? What was your child's favorite color? Because I'll wear it. If I know I'm gonna see you, Julia, I'm gonna wear some pink, I'm gonna if I had little mouse ears. Yes, Malcy. I would put them on if live it up. If I could yeah, what is what was Kerrigan's favorite color? Pink. Pink. All right. Well, I love that color myself. So I will never not see Carrigan when I wear pink. And and that might sound trite and and dumb at this point, but I do lock these things away. And I think as moms who understand this, we lock these things away. And When I see red, I think of kiddos, you know, that I know that loved red and gold yellow or gold, of course, for all of our kids. blue, pink, purple. It doesn't matter. And and we do lock those things because I I they all mean something. And any kind of little wink that we can give another family, another grieving family, any kind of wink that feels like That wink from God, that wink from our loved one, it is is a wink. Because if we believe it is a sign from them, it is. It is. And that's the greatest piece of advice that I have for anybody. If you see a numeric sequence, a license plate, a billboard, a color, a bug, butterfly instinct, mouse ears, I don't care. If it is a sign for you, it is a sign. Period. I love that. Honestly, I'm really grateful you said this because I do again, the whole point of this podcast, why we're spending our our time together is to to say to say these things out loud. Some of these topics are very difficult. but it's for someone that's listening in that maybe again would show up to your house or see you in public and think the opposite, like I shouldn't say Jack's name, I shouldn't say Sasha or Carrigan. I don't want to make them sad. And for them to know, at least for us three. We say their name in our head all day long. So to hear it from you, it makes it feel like they're here. You're thinking about them. They're they're here. It's just it's I I love that because people listening in, maybe next time they see a friend who's gone has lost someone, they could say, Hey, even if they lost, maybe not even cancer, they lost their dad. Like, hey, how you know, tell you know, I just wanna say I'm s I'm sorry what happened, but you know, tell me about your dad or do that. You can mention those people because it feels so good to us. To talk about them. So I wanna ask you, you are so far ahead of us in the the grieving journey. And I really I am genuinely wanna know, you know, it's been so long. Does it feel like that to you? Does it feel like it's been so long since you've seen Jack, since you've seen John, or does it feel like yesterday? It it feels like yesterday, but yet yet a lifetime. I would those things that those things fade that that smell that I wish I could still pick up, you know, Jack's favorite stuffy or something and that that just smell that smell or John's cologne or something like that. So it it does feel like it's been ages, but when I talk about him like this I feel like, well maybe it was yesterday or maybe if I look outside, you know, they're gonna be coming up the lawn. I But yeah, it is it's a lifetime and and it gets to the point where you just feel like how can it be so long? And how can I still be here and functional? And how have I survived? And yet I look at Annie and Tommy and think, How could I, how can I not be here? And and literally for me, it is a lifetime. Because I said goodbye to a child in twenty twelve and I welcomed a child in twenty twelve. And so and in between that time is Annie's birthday, which is coming up for me in just two days, on the day of this recording. And so I think, Okay, I'm celebrating a birthday, but I can't celebrate Jack. So it's a very difficult Day for all of us. And then we celebrate Tommy's birthday next month. And so Jack's been gone 14 years and Tommy turns 14. So I can never say that 2012 was the worst year of my life. It of course was not. It was the most dramatic year of my life, the most life-altering year of my life. But it certainly wasn't the worst. And Tommy turns this age that's the exact number of years that I've been without Jack. And so it has been a lifetime. And and how lucky I am to have this beautiful life. who was only three when his dad died. So he's lived this life without knowing two of the most important people in his life and certainly in my life and Annie's life. And he doesn't have the privilege of knowing them. And I know that that's hard. But I know that through every interview, talk, piece of work that we do and that he participates in, he's getting to know them a little bit better. And that's all that that Annie and I my parents and Annie and I, you know, can do for him at this point is is give him these memories of what they were like, of their happiness, their goofiness, things that drove us crazy, or whatever that might be. Because I I worry sometimes that for Tommy, Jack is literally an enigma. this mythical unicorn. You know, is is Jack The unicorn for Tommy, it's like, did he really does it really exist? Is it could it appear? I and yet I say yes because I I keep him everywhere around us and talk about how proud he would be and how excited he would be to be a big brother. My goodness. That's unreal. I did want to ask, and I don't know. Again, you can skip over any of my questions that are too personal. I have never actually known of anyone that has passed from cancer treatments. I don't I didn't I I've never even been around that to even think about that topic. And I know that that's n very near and dear to you, not only because it happened to you, but also the whole thrive part of your mission. Is it's not just about the therapy, is are you going to survive this therapy longer than the five years? Can you tell us about that? how does that even happen? How do you die all these years later from cancer treatment? You know, it's it's interesting. and John was told that there's I could talk about this for hours. My condensed version would be that when Jack's When Jack when Jack's cancer relapsed, he was told there was no cure. Similarly, when John's cancer relapsed, he was told there was no cure. So, you know, he was 24 years old, and his treated cancer came back. And at the time, there was no known cure. Things that we've all heard. But because of research and advancements, There was a groundbreaking therapy. And I r I distinctly remember John talking about a a young woman his age that he was in treatment with whose cancer relapsed and she had passed away. And this therapy was now available. And it had only I mean this was mere months. And they said, We don't know what the long term side effects of this will be. And it was interoperative radiation, breaky therapy. So high dose radiation, open you up on a surgical table, take out the tumor. And then basically at that time, and now this was the early nineties, it was like dropping a hand grenade into your abdomen. And that's John had an abdominal liposarcoma tumor. So they dropped this hand grenade in and said, we know, we don't know what the side effects were gonna be. And John said, I don't care. Save my life. We'll figure it out as we go along. And who will who of us wouldn't say that? We all would. Go, okay, we'll figure it out. If you think this can save me now, we'll figure it out. Because you've already figured something out in just these few months since I watched a friend of mine that I was in treatment with die. So okay, let's move it forward. And so they did. And you know, we've come a long way to the point where treatment like this is laser guided and it is pinpoint precision. We're not dropping a hand grenade, but at the time that's all that was available. So he just received far too much radiation, lifetime dose of radiation, in one giant hand grenade. And he slowly just fell apart. for lack of a better word, He developed a lot of adhesions that would cause, his GI system to to adhere and then small bowel obstruction, small bowel obstruction, lots of these things that just kept happening. And so eventually though, it wasn't just the GI tract that that started to have difficulties. It was just that these tissues became like tissue paper because they were so fragile and thin. From receiving all of this therapy, that he there was just no more patching together that we could do. He was never then a candidate for a transplant because they said we we can't we can't do this. He he doesn't his vascular system, I mean it just affects everything. And so they couldn't keep patching him together. I ran dialysis in our home for him for 10 Ten months, you know, a giant surgery that he did survive where the surgeon came bursting into the OR and said, He is literally falling apart in our fingers and I don't know what's left besides prank. And I sat in an OR waiting room with family and some friends and went, patch him, patch it, patch him, patch him. And so they did. And we got an additional year year, that was, you know, dialysis that I ran at home and not without all kinds of of difficulties. But I think at the time You have to realize that new therapies, we may not know some things, but if we know more again, if you know more now than you did then, we have to go with what we know now. And we think we can save your life. And he said, I remember laying on an OR table and the doctor saying, You have a fifty fifty chance of waking up. And he said, John looked at him and said, I'll see ya tomorrow. And he did. He saw him the next day. And so he always knew, but he always stayed positive because he said, okay, well, they came up with this treatment, we'll figure something out. And so we always were on the side of we'll figure this out. And it might not be ideal, but we'll figure it out. But I s I slowly watched him and I mean I watched him at other points in time where we thought, this might not turn out well, but but it did. I think that I knew when he had his major surgery and the surgeon came flying into the OR to the waiting room and pulled up this chair. I mean, literally, pulled up this chair right in front of me, all these people in the room, and he looked me just square in the eye and he said, Sarah, he put his hand on my knee and pray. Like this is not going well. And and we prayed. I think at that moment I knew that I wouldn't have decades with John, but I started to maybe bargain for years. like we all did with our kids, like, okay, I'm gonna bargain and say, can we just keep kicking this can down the road? It was never perfect. We were all told it was incurable upon relapse. But if you can keep kicking the can down the road, and I think that's how. We approached Jack or we approached I then had to approach John. Like, kick the can down the road. So he Yes, he d he died from the therapies. But what do we know now? We don't give people a hand grenade of radiation into the abdomen. It's precision. It's laser guided. It's pinpoint. So we know better, we do better. And I would never go back and say, gosh, I wish he didn't have that horrible therapy, because it did give us an opportunity to be married. And have these beautiful kids and yes that meant going through Jack's cancer, but I wouldn't change being Jack's mom. I wouldn't change being John's wife for whatever period of time that I was given that that honor and that ability to love them and care for them in the best way that I possibly could. Wow. So powerful. It really is. And you know, I I understand, you know, what John was saying too, because Carrigan had to make those decisions. We've had to make those decisions for our kids. Young kids are making these decisions. This is what you have now. I'll take it. Because there isn't anything else. And even though something today might be better than it was ten years ago, it still is a toxic treatment and it still is a gamble. And Is it is it curative? Is it buying time? Is it like you said, kicking the can? Yeah. But I know, the therapy, ironically, the therapy that gave us that gave us this this hope and this this light to have Tommy in early twenty twelve, I just have to It's just it did the the therapy didn't save Jack, but it gave me Tommy. So it did give life. And it was just too late for Jack's relapsing cancer at that point. But the the positive is that that therapy is saving other kids' lives with neuroblastoma. And Jack's name is written all over. fifteen, sixteen clinical trials, I I I can't even remember, but his name is written on all of them. His name is written on research that is helping to save other kids. And I know that's what he would want. I know that. He would say people. You gotta believe. You gotta believe. Yeah. Yeah. And so I think that would be, to answer your question, Julia, is yes, we can panic about is this the right therapy for our child? But at some point we have to just say, people, you gotta believe. If you've been led to this path and it's available, take it. Take the opportunity. Because we don't know what we don't know. And if it gives us Two weeks, two months, two years, two decades. I'll take it. Yeah. So I do want to ask, cause, you know, if you were to just look you up and meet you somewhere at a at an event, you mean you just, you know, you look so put together. You're, you know, you're leading this foundation, which is gigantic in what you guys are doing. I mean, you know, we were on drugs that you guys now haven't All these hospitals all around the US. And I do want others to hear from you personally, what does that take for you to actually get up in the morning and continue to do these things? The reason I ask is I have many days, especially the really early morning days. Like when I open my eyes and it's like super dark and everyone's asleep and I look out, and sometimes I'm like, ooh. So I don't know if I can do today. you're just you go you look out there and you're just like, it's like empty right now, because your child is gone and you realize your life is no matter how full of stuff and new things and you know, new maybe even new babies and you know, new life what for for your child that's moving on, or maybe you know what I mean? Like your life is full of things that are happening every single day that you're adding to. But I have moments I wake up and I'm like, it's still so empty because it's always gonna feel like that. Like what does it actually and again, you've been through so much. Like I w I I I want people to hear that because I wanna give others hope that you can do it if you like w w how? I don't I I wish I had a recipe. A magic elixir. I don't know. Some days I would say it's a little bit of red wine with a little bit of chocolate and you know, other days it might be a good book and sleep. but in general, I would say I don't know how I have done it other than John was meant to survive. Beyond Jack to show me and give me a glimpse of how to do this. I truly believed when Jack died that I said, How are we ever gonna have the best day ever? Because Jack also was keen on saying every day can be the best day ever. And we all lived by that. But I said, How are we ever gonna have the best day ever again? He's not here. But then we're gonna have Tommy. And so I said, How am I ever, ever in my lifetime going to have had the very best day? Because there will be no day where I have my entire family. And John said, Because Jack told us every day can be the best day, and that's how we're going to live. And so my advice is, and my my not advice, my thought in my mind has been, okay, we're allowed. Lots of best days ever. And that's how I have tried to proceed. And I proceeded with John and with Annie and Tommy in saying, Well, this was an awesome day. This was a great vacation. And nothing has to be the best. They can all be great. They can all be amazing. And then in losing John, I'm not gonna say that every day is pretty, and I've always joked about. is Sarah After Dark edition of the podcast, my own podcast, Sarah After Dark, or she's crying or like, And there are certainly people that would hear this and nod their heads and go, yeah. But I think in in in general, I knew that I had to be an example for my kids of resilience and perseverance. And I don't want Tommy, to ever feel that part of me died when Jack died because yes, he took part of me with him, but my heart still grows. And that's the thing that I would say: the heart is a muscle and we have to exercise it. And I do not mean by doing extensive cardio, because that has not been on my survival task list. That's good to know. I'm gonna tell Daniel that when he makes me take a walk every day. I mean, yes, it helps. And for me, fresh air, sunshine, walk, exercise helps. But for me, the true exercise of the heart is just plain using it. It is using it to love on my kids. It is using it to love what I do. It is using it to love helping other people. Love other people. Give with all of my heart. I'm an I'm an all in with my heart kind of person. And that is me exercising my heart and helping it to just plain expand. The part that Jack holds of my heart is still fully intact and right there. It's just that I've grown a lot of other things around it. And so he is always there. And if I haven't outgrown him, he's just part of everything else that I do. Because I'm I've exercised the opportunity I have to love. And that's the best advice that I have would have to give is just exercise love because the heart is a muscle. And the more we exercise love and loving others, the more we're gonna get in return and the better we feel and and that's how I feel about it. And Julia, I would have no idea. Only because we're friends now, that that love that I gave to you in that moment, at that point, where I'm going, I am at an event, I will respond, I'm on it. I didn't know, but it made my heart feel good to say, okay, I've got to, I've got to give this mom some help, and I'm gonna do that. But that was the an exercise of love that I I know you and I may have never spoken again. I don't know how meaningful that was, but that doesn't mean it makes it any less meaningful for me to feel like, okay, again, deploy crappy knowledge. I have knowledge, I have resources, I'm going to deploy and say, I am gonna help you in the best way that I possibly can. And that does I love that you said that because I was about to say that too. I was about to say the love you gave Sasha and you kind of segued into that. I I I will never I not, and then I'm looking up Sasha just as I see Carrigan at arms wide open and went, Okay, well I need to follow this, you know, this family, what's happening and and remember your post about Kerrigan's death, Tammy. I you didn't even know you didn't know until right now, at this moment, that I sent you my love, I sent you my prayers. I shed my tears knowing that you were entering this club that I wished you didn't have to be part of, and thought, if it's meant to be, then we will we will be connected somehow. And then I will be able to tell you. And now here we are connected. And I can tell you. I cried and I But this was wrong and unfair, but I had to send you my mother's love at that moment, whether you knew it or not. Amazing. And now the fact that the three of us are connected because of Julia and Sasha is just it's just it's those God wings. It's meant to be, it's meant to happen. And it's incredible. And you know, I sit here thinking about the things that you said. I was holding on to every word that you just said about grief and how you continued to love and your heart expanded and and Jack is still part of all of that and all of this love is grown around it. And when you said the heart. still grows. I feel like every grieving parent really needs to hear that because there's a moment in time when you think it can't. You you're just so focused on what you've lost that you can't see what you still have in that moment and you can't imagine what can come from it. And I think it's just so important. And I know that in the in the months after we lost Carrigan, our son surprised us with the with a cruise and he It was just great. He just wanted to take his parents and just have the three of us make new memories. And we honored Carrigan and we had her picture with a little tea light in our cabin. And you know, everything we did honored her. And we found that in that moment that we could do that, that we could we could keep her with us and her memory with us and expand our lives and continue our lives and and still seek joy and find joy with so much heartache. And and we we've still been trying to do that. And I think what you said just put it so so beautifully, and I think it's so helpful for families that are navigating the same path to hear that. Just your love keeps growing and your love for them just keeps growing. Yeah. And grief and love are exactly the same thing. Yeah. Because there is only Horrible grief where there is great love. And so I I don't think that we shy away from the topic of grief. We shouldn't shy away from talking about someone's loved one because it they are it's the same. They are one in the same. Grief and love are they live together and now they just have to they just have to live in harmony. And as hard as it is. They can live in harmony. And it is I I think about the scene from which makes me cry, and I'm not a an animated movie crier, but the scene from of course it just popped out of my my head. The scene from inside out at the very end. And the way that they help this little girl in this movie is that joy and sadness depicted as two girls, but they had to come together and put their hands together to push the button to help this little girl, you know, find her way again. But they had to do it together, and that's the most meaningful scene in a movie that I can possibly think of. And I cry. Just thinking of it, because that's the way that we solve something. We can't just solve it all with joy. We have to solve it by letting them be married together and doing it together. Because that's the only path forward. We are all going to have grief at some point in our lives. And when joy and sadness can solve the problem together, that that's the scene. That's love I love that. I love that you said that. I think it answers a lot of my questions in my head by like I was like, I gotta get a puppy right away. I gotta film it's like filling your life with the love that you have to just because you have it and it's just like adding the love. And honestly, I wanna I wanna wrap up with this because I think it's so important for us to really spotlight the work you're doing. I'm gonna share the story and then I want you to really tell us about your foundation because where we met and the love that you poured into Sasha, which is me being a desperate mom, it had a a part in her treatment which things were failing. And I had, you know, researched, okay, there's this p you know DFMO, this tablet that if we can get our hands on it, and you know, RBMT doctor, he was the one researching it and actually saw like the mouse studies and saw this shrinkage and I tried to get this drug and it was not approved by insurance because she didn't have neuroblastoma and it was twenty thousand a month. And I remember sitting down with Daniel and I'm like, twenty thousand a month, like even if we liquidate what we have, like how many months can we do this? And I remember reaching out to a friend and she said, Get in touch with Sarah. And that's when I texted you. And I swear it, guys, like I remember this exactly like this. I blinked my eyes, and a few days later I was on a plane. To Penn State. And then all I remember is now Sasha and I are after our first appointment sitting at the hotel at Penn State. And we have this bag, literally this bag of $60,000 worth of medication, three months worth, because we were out of state. And Sasha's like, score. Like she's celebrating in the room. She's like, score, like, literally, score. I have, I think I have a photo of this. and we were just so Happy because it was a win. It was a win against against a a naysayer. It was a win against if you're insurance in it. It was a win against a bl it was like a mountain. And you helped us climb it, get to the top and celebrate, and then slide down into treatment with it. And it's like insane. It was like this bag, and it had a TSA note that was like the doctor was like, bring this TSA note in case they try to confiscate this at TSA. And I was like, my gosh. And I Literally had this backpack and I like wouldn't leave it. I was like, I had to go to the bathroom. I was like, Sasha, guard this backpack with your life because it was a lifeline for us. And so I really just want to take the opportunity before we close up, you know, this amazing podcast. someone that doesn't know about bee childhood cancer and they're hearing about it for the first time. I want to know what is it? What is bee childhood cancer? What do you do? And so people know how to how to use your foundation to help. themselves or others. Childhood cancer is is a group of we're in allegiance and we're an allegiance founded by parents, quite simply. And as we all know, this is a horrible diagnosis and you find the best people in here. and we are now what was at one point six different foundations and we've come together Started in Boston by a desperate dad for his son Will. And, you know, I'm in Wisconsin for my son Jack. And Jack and Will were both diagnosed with neuroblastoma the same year, 2005. He started his efforts. I started, you know, we started our efforts. But it it's really about parental love and then, you know, coming together as other groups, going, We can do more the more of us work together. Toward the same goal. And so Beat Childhood Cancer is an allegiance of parents with families all over the country that are supporting the efforts to fund and fuel new clinical trials. Research that is not just sitting in a lab, but is actually being mobilized, translational research. And we have found in the Beat Childhood Cancer Research Consortium a group of physicians. That truly understand the translational piece of this, that research can't just sit in a test tube under a microscope in a lab. We have to mobilize that. What do we see? How do we translate that into putting it and giving it to a child as fast as possible? Because there are kids that need treatment now. There are kids that need therapy today. They are sitting there today. We can't say, well, 10 years from now, this might result in something that could help another child. I've experienced this with Jack. You have both experienced this with Sasha and Carrigan in finding providers that will say a clinical trial. We're gonna try this. And we all knew at some place, we've all acknowledged at some point, we knew that this was a stopgap. But those clinical trials are a beacon of hope. And here's the difference these clinical trials can work. And my friend and beat childhood cancer colleague Pat Lacey. DFMO worked for his son. His son is alive today because of a pill. Those pills that you got in that bag. Even though it didn't work for every child at that point, it is helping more kids now. And we appreciate that. And we can't turn a blind eye to something that may work for a child. And how do we treat the child in front of us? So that's what Beat Childhood Cancer is aiming to do. Take research, but translate that into kids, and then really look at each child as an individual and say what could work best for this child's cancer and then for this child's relapsed cancer. Because we all know that that relapsed cancer is different than the cancer that they were initially diagnosed with. So we have to keep looking at each stage of this. So that parents do feel that hope. So that we can provide that beacon and that glimmer of look, we do know more. And we know more about how your child's cancer is behaving today. Let's try these therapies. So it I didn't help you. I didn't wasn't able to give you $60,000 to pay for that therapy, but I can certainly make a connection. And I think that's what Beat Childhood Cancer Foundation is so proud to do is make the connection to say, here's a physician I want you to reach out to. Here's the way to contact them. Those are the things that we want to put in place. And our mission is to put that in place for every child everywhere. So that within five hours of say everybody's home, if you don't have a Beat Childhood Cancer research consortium. hospital in in your city, is there one within five hours that you can get to? So it doesn't always mean a plane ride. It could mean get in the car, we have to go. Because being able to for you to get to Penn State and see Dr. Scholler meant enrollment on a clinical trial that put that medication in your hand. And that's what we want the ability to do. That's our mission. That's our goal. Every child everywhere, how can we help? And also acknowledging what does hope look like for each individual family. Does that mean one more summer at a beach? Does that mean we will fly across the country, across the world to figure it out? We're here to help say, you know, can we put that? Can we make sure that there's a hospital in your area that can offer this clinical trial? I love that so much. And I really do want our listeners. Yeah. I want our listeners to know that everything that be childhood cancer says they are, they are for me, they were. They were exactly that. When you go on your website and you look at what you guys are doing, I experience that. And I do thank you so much for getting up every morning and continuing to do the hardest thing, which is guiding being light. And even though you're sad and you're might want to stay in bed and I think I hope you do some days. I I'm trying to do that here and there too. That you're thinking of us and other people. And I do have a quote I want to leave this podcast on. And I hope you don't mind me repeating it, but it literally changed my life. I say this because I think about what the I I have embodied the meaning of what you said. So you had told me that, you know John, your husband, when Jack was going through therapy that you asked him why us? Why Jack? And his reply to you, John's reply to you was, Well, if not us, then who? What does that mean to you? Because it means so much to me. it will forever mean a lot to me because I asked that question of John and and he responded and I didn't have a response. Who? Who would you wish this on? And I thought I'd I no one. I I would never wish this upon anyone. And then when this happened, you know, to John and we lost John, and I said, Who would I wish this on? No one. So on we go because bad things happen to good people. And I don't like it. I'm not sure I'm at the point of acceptance, but I can tolerate the trite saying, which I I don't like to give platitudes to people at all. But that is a quote that I have emblazoned on an orange sweatshirt, actually. If not us, then who? Because I don't wish it on anyone. No one would. And I think that all we can realize is that we have to do the best that we can. I don't wish bad things upon anyone. I'm so sorry that they happened to my family. And yet am I in a position to make some sort of difference? And if you would go back and tell twenty-one year old, bright eyed American Cancer Society Sarah, that this is what she would still be doing 30 years later. And have all this extra meaning involved, I think she probably would have gotten out of the business immediately and thought maybe that would change the the course of the planet's spinning access, axis. But I think 21-year-old Sarah would say, Okay, get after it. And I have a whole new meaning for why I took that first job with the American Cancer Society. And how much more I would add to that now and say, okay, I didn't know it then. But even 21 year old Sarah knew, if not me, then who is gonna do this? So let me try to make a difference. And that's the best all of us can possibly do in this life is try to make it better. And that's you are. You are you are you have thank you. Yeah, and and so are you, and most importantly. So are our beautiful angels. Angels. They are. This is all the credit to them. This is the name, Angel Mom's Pop Podcast. It's it's a it's the angels are here. They're guiding all of our work. They're guiding so much. What a what an what an episode. Tammy, I told you this was gonna be a crazy episode because it's gonna every time I talk to Sarah, it's so deep and so raw and so meaningful. Thank you, Sarah. And so important and poignant. it's just incredible. And you you talked about hope, but I'm I'm a newly grieving mom and you you give me hope because I feel like, it's been nine months and I'm I'm initially I I was just busy, busy, busy in shock mode, in shock mode. And then I had that realization, like, my God, Kerrigan's not coming back. This is forever. So I I feel like I've kind of wobbled through. and I've been functional and but it's it's hard, it's challenging, and you you give me hope. I thank you. That's your family gives me hope your story. Compliment. Thank you. Carrigan will always give you hope, Tammy. Yeah, she sure does. Always give you hope, Julya And I would say to any parent listening, find a peer. Find a peer mentor in this grief that you relate to, that you resonate with, that you can talk to, and just keep talking to that person. It will always be okay. And I offer myself to anyone who needs a grieving parent who understands because we have to stick together. And there is something to be said about we mentor people through lots of other things. And quite frankly, we need peer mentors in grief. Yeah. Who can be a beacon, but can still say, I fall down on the floor crying. And it has been that long. And it's okay because I know I'm going to get back up again. So Julia and I will say that to each other. One of us will text the other and say, We just had a cry, I just had a crying session, and she'll say, my God. Me too. Or she'll reach out and just say, I just was crying for the last hour and you know, it's it's I've learned it's okay to say that. It's okay to have those moments. They're not weakness, they're remembrance. It's just love. It's love with nowhere else to go. And the tears that we cry are just because we can't do their favorite thing with them or bake their favorite cookies or take them on a fabulous vacation or give them the best day ever. But I think if we can try to do those things for ourselves, even if that means crying, and even if that means spending a day crying or in bed or whatever that might be, it's okay. Because that might be the best that we can do for ourselves that day. Yeah. And they appreciate that and they love us. And I just I stand firm with the two of you. As a mom in this fight forever and as a grieving mom who knows great love. And I love You're amazing. You're amazing. And I love your kids. We will. We call it a we call it a sandwich hug in our family where no matter who we're with and how big the party, there is a giant sandwich hug at the weekend of any kind of We 100% need that. And I am I'm going to Hawaii in December to walk a marathon in memory of Jack. And so we have team IBAC Jack going to the Honolulu Marathon to raise money for beat childhood cancer. My daughter, Jack's twin sister, is going to run 26.2. my goodness. I am going to walk 26.2. And we're hoping to raise twenty six point two thousand dollars. Wow. Let's do this. For let's do this. And I know And his energies there, 'cause he's been there for twenty and Tommy's there. Tommy will get his first trip to Hawaii in in such a meaningful way. So I think that we do find those things then along the way. So that's a good announcement I have coming on Beat Child Education. I love that. Yeah. Yeah, and we're gonna share, we'll share, be talking cancer. If you don't mind, we'll share your page so that people can follow along and then definitely be on the lookout for that fundraiser 'cause we're all we all wanna be a part of that. We wanna get we wanna be a part of that goal. Okay, that's a good one. I wanna put I wanna put a child behind every mile. so I'm so Carrigan and Sasha are clearly on my list. I love it. Child behind every mile, a ch a smile behind every mile. okay. Now I have to write that down. I now I have to write that down. Because that that was that was golden. My one marketing class. I knew it would come in handy. girl. I I'm so proud of you, Sarah. I'm so proud I'm so, so, so proud of you. And I'm I'm proud of us. And I'm and I just I'm I'm so grateful you're on this podcast. I this is exactly what this podcast was made to be is for others to get to know people like you inspire them and help them. So I think that's a wrap. Tammy do you have your closing? There's a closing line that we love so much. No, stay in the light, everybody. Stay in the light. Stay in the light.