Latest / Angel Moms Lumina Podcast / Episode 2: Diagnosis Day — If Frontline Is the Same, Does It Matter Where Your Child Is Treated?

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Episode 2: Diagnosis Day — If Frontline Is the Same, Does It Matter Where Your Child Is Treated? · Angel Moms Lumina Podcast

• Angel Moms: The content shared on Angel Mom's Lumina, including audio episodes, guest interviews, and show notes, is created solely for community support, personal storytelling, and informational purposes. The hosts and guests share personal experiences and do not provide professional, medical, psychiatric, legal, or financial guidance. Discussions regarding hospitals, medical protocols, clinical trials, or care centers should never replace direct consultation with licensed healthcare providers. If you or someone you love is navigating a medical condition or experiencing grief or mental health distress, please reach out to qualified healthcare providers, dedicated grief counselors, or your local emergency resources. Well, I'm Tammy. Welcome back to Lumina. We are so excited that we launched this podcast and you're all here with us. I think, Julya, we had over 2,000 views within our first day, and I think we're up to about 3,300 views after a week, which Tells us that we have a desire to help one another, that's for sure. my gosh, yes. and hi, I'm Julya. And yes, Tammy, what a response. I mean, it's just it means so much to us. I know we've been talking about it for since it aired and we've had so much feedback. people reaching out to us. And, you know, I think that most people that have gone through hardship and they look back on their journey, there are so many things they know now that they wish they would have known. So I think that, you know, if we can share what we've learned and help even one person, you know, one one person get one step ahead, then this podcast has served such a meaningful purpose. And it's just it's so exciting to be a part of that together and and with the community. I mean, I agree. I I'm confident that giving this space to share our experiences will be so helpful to our community. I think today's topic is really gonna resonate with a lot of people. we're now beginning Childhood Cancer Awareness Month and we wanna talk about that day that absolutely shatters your world when you hear that your child has cancer. So if you want to tell us about how Sasha was diagnosed. Yeah, absolutely. I think I think this topic is gonna be very raw and I think being in September, Childhood Cancer Awareness Month, you know, we're talking about our personal experiences, but I think the current data I looked it up, it's like 1250 kids this month are going to hear that they have cancer. And yeah, I think this this is such an important episode to have, you know, diagnosis day. So yeah, I'll go into what happened to us. I think our our diagnosis day is definitely ex very extreme because of all the change that happened very quickly. It happened super fast. so essentially October sixth, think of like a random Thursday, you know, I'm just in my home, you know, a regular day, looking forward to the weekend. And I get a call from the nurse from school saying if I can come pick Sasha up because she's ha has a sprained, ha is complaining of a a pain in her neck. And when I picked her up, the nurse said, You know, why don't you go to urgent care and get it checked out? Maybe they can do an x ray. And I was like, Yeah, that's that's a great idea. So We leave the school, go to urgent care, and he does the x-ray. And I'll have the x-ray picture posted for you guys. And there's just this ball coming off Sasha's rib. And the the gentleman goes, You need to go to ER now. You need to go straight to the ER. And so we go straight to the ER and they look at images and basically say, oncology's gonna call you in a couple days. And we said, I said, Oncology? And instantly was like shock, you know. and so we get discharged from the ER and we're heading back home and I'm on the phone with Daniel and we just decide we can't wait a few days. You know, we we need to understand what's going on now. not to mention me, Sasha is in pain. and so that was October sixth, Thursday. October so what we decide we so by the time we got home Daniel and Sebastian had already packed a few pajamas, like very comfortable clothes, and we decided, well, Atlanta's four hours away. Let's drive to Atlanta. There's a big children's hospital there. My parents are there. So basically October sets by October 7th, so within 24 hours, we are in the ER now in Atlanta. So we go straight to the ER. This ER was different. They did not send us home. They admitted Sasha right away. And essentially the biopsy was taken in Atlanta. And so when they came out and they said, it's ewing sarcoma. And the way they said it, it was like there was just hopelessness in the air. Like, and I don't know what Ewing sarcoma is. N nobody in the room knows what Ewing sarcoma is. And so, you know, I hop on a laptop, what is Ewing sarcoma? You know, what's what are the top pediatric cancer hospitals in the US? And and then I search who's the top who has written the most papers for Ewing sarcoma? Which which doctor? And it just so happened that Dr. Dubois in Boston came up. And Boston also came up as the top, you know, n ho hospital in the US. And I said, okay, well, the specialist is there and that and in that hospital that's also in the top. And so we look at the team and I said, we need to get to Boston. Can you please help us transfer Sasha to Boston? And basically the oncologist looks at us and says, no, that's not a good idea. They said, frontline is going to be the same no matter where you go. And Boston probably won't take you. They said the Dana Farber team is very selective and the best thing for you to do is to come back on Monday, Tuesday, let us put the port in and start the chemo right away. And so we were like, okay. And so we get discharged. So this is again, this is this is just Friday. This is this is this is this is Friday's. So we get discharged. I believe we were discharged sometime in s on Saturday. So we get home and instantly I start looking at flights to Boston. And I said, Well, I n I know what they said, but if we believe we need to be in Boston, we need to try. So we boarded a plane. It was me, Sasha, Daniel and Sebastian in our pajamas that we drove to Atlanta in, nothing else with us. And we boarded that plane on this was Sunday night. Sunday night we boarded the plane by my early, like really early hours on Monday, we landed and we go straight to the Boston ER. Boston ER not not only did they admit us, they put us straight onto the floor with special team and straight onto Dr. Du Bois's team. And I I mean I have chills I l I literally have chills now because I think and this is another topic, another podcast that we should definitely have, but I feel like throughout the journey there's going to be a lot of naysayers. There's going to be a lot of people that tell you you can't shouldn't won't be able to do something. And I think that if in your gut you feel like you should be somewhere else or there's some other opportunity, you must pursue it and you must try to pursue it in person. Had we waited in Atlanta, yes, we probably would not have been able to get into the Dana Farber team. But because we arrived and we're there a family, she's in pain and we're like, help us, they help you. And and so It gives me chills because if I think about it now, you have to understand within ninety-six hours we were in three different cities. We were in three different ERs. We were in shock. We were terrified. I knew nothing. Nobody knew anything about this disease. you're spinning and you have to make these life changing decisions. I'm talking about life changing. This decision will change your life while you're spinning. And so the only way really I could describe it is you're basically spinning and you're in the middle of a tornado. and the crazy thing is we actually never went back to that home. Like the first time Sebastian and I actually went back together was eight months later when we were doing a final walkthrough before it sold. And I remember like we walked into that home and it was this it was our dream home. And it used to have like French music and You know, just this warm vibe. And we walked in and it was like cold, like abandoned feeling. And, you know, it's it's when I really you realize this in this journey is that, you know, when they say home is where the heart is, home is where the heart is. It is not those walls, it is not those rugs and vases, whatever you fill your home with. It is not that. When something like this happens, you realize the most important thing is your health and your family. The rest of it doesn't matter. So It was crazy 'cause we we went through the walkthrough in the house and Sebastian was like, Mommy, look, this is where I left my toy the day we left Just like kind of sitting there abandoned. And so, I do for a young person to to have his his family go through this, his sister go through that, but just that visual of him looking at that toy, it's it's poignant. It's yeah, and and that's the thing is it's when you think back on it, it's It's a very traumatic experience. You almost can't believe that you can handle that kind of stress. And I think, you know, I think one thing that I do want to mention is when, you know, friends and family, they start finding out and everyone desperately wants to reach out. And it's so beautiful for the community to reach out. And the most helpful thing for us was when people took things off of our plate without putting anything back on it. And like for an example, like, you know, getting a text message. That says, you know, I really want to help. Can you make me a list? Right. That puts something on my plate where again, you just have to imagine we're spinning in the middle of this tornado. We don't even know what we need. So my biggest advice, you know, for a lot of people when they find out there's a cancer in a family and they're your, you know, friends is, you know, if you can take care of something, just do it. Like bring the dinner, send that gift card, you know. Mow the lawn, drive by their house, you see Amazon, just put it in the back and send a text like, Hey, I moved your boxes to the side to the back and they're safe. because you know, in those first few days, like one less thing to think about is such an important, you know, an an enormous gift to a family. Yeah. Gosh, I mean, your family was just really thrown into so much and you had to make a lot of quick decisions and you know, they were critical decisions and they were immediate decisions and that's monumental. And, you know, you trade your quote, normal family life for a clinical world that's so foreign and it's truly terrifying. It's honestly so surreal that you just can't believe that this is your new world. All of a sudden it it happens so quickly, you know, and y you spoke of all these meaningful ways that You can help families that are going through this. And I mean, they're just such excellent suggestions. we had people in the community who did this for us. They would mow our lawn and plow our driveway. And we never even asked. We would just come home and say, my God, we don't we didn't even know who did it sometimes. I would just post a general thank you on Facebook because people didn't they didn't leave a card. They just didn't want us to know. They just wanted us to come home and not have to deal with it. friends that would drop off. incredible food and like you said, the gift cards, fundraising efforts. I mean, just so many thoughtful souls that kept our family afloat. And my sister would move in for months and months at a time. And she did this over seven years, where she would come and stay with us. And, you know, she would hold down the household and take care of our pets. And you know, without her, I don't even know if we'd make it. And You know, my friend Steve Carrigan's musical partner, he checked in almost every single day. And other friends that would check in, and it's like this village just sprung up out of nowhere so quickly. And, you know, we were really grateful for that because I can't imagine without it what we would have what we would have done. Yeah, it's it's incredible, like it's just incredible what the community can do and how much it it helps us, you know. Exactly. Well tell me yeah, tell me about about your diagnosis date, Tammy. I don't I don't even know that I I know. 'cause I don't think we started following each other until a little bit later. Wait. Yeah. So, you know, I say to myself, Carrigan's diagnosis took a year. You know, how the hell did that happen? Honestly, a year. How is that possible? you know, she was diagnosed with osteosarcoma after a year. It was an agonizing year of watching her go through hell. she was a black belt in Taekwondo. She was a dancer. You know, she was an active young person. She was a musician. So she was performing in the community. And doctors just repeatedly brushed off her severe leg pain as overuse and a sports injury. And that's a delay that so many athletic children face in getting diagnosed from what I've heard from other parents sharing their stories too. They say, we were diagnosed as a sports injury too initially. which is such a shame. And, you know, so for a year Carrigan had this really intense deep pain in her leg. and she felt off, she felt exhausted, she felt depleted, she looked gray, her blood work was normal. you know, everything was normal. Because we were going back and forth to the doctor. It's not like we weren't trying to find out what was going on. And then about six months before she was actually diagnosed, visible swelling developed near her left kneecap. And standard X-rays revealed nothing. so then the battle with insurance began for targeted scans. And I had Blue Cross at the time. And their their thing was, well, you know, you've had all these other tests and there's nothing that's showing. So why do you why do you need to have these targeted scans? so that fight began and Carrigan could barely walk. And she confronted me one night and she said, You know, you're gonna lose me. And If we don't find out what this is, you're gonna lose me. I think I have cancer. And I said, Why do you think you have cancer? And she had a friend who had had cancer and I thought, you know, maybe she was just thinking some of the same symptoms. And she said, You know, you raised me to use my intuition and now I'm using it and you're ignoring it. And that was like this defining moment as a parent. it was just I can't even describe it. I felt like we were failing her. And, you know, we thought she was depressed, we thought she was anxious, all of those things. And those things were happening, but they were happening because we couldn't find the source of her pain. So, you know, the next morning after that conversation, we took her back to the primary and she circled the area on her leg that was swollen and she gave us clear instructions. She said, Just go straight to the ER, don't leave until you get the MRI. And I was at a housing conference and Paul Brought her there and they were there for six hours and they were gonna release her. And it was just at the very end that another doctor came in and took a look at it and said, you know, I'm gonna do this and this and send this off to, you know, our local hospital. And that's when it came back with the the diagnosis of probable probable osteosarcoma. So just weeks after her 18th birthday, the scan revealed a ten centimeter baseball size tumor that was hidden under her kneecap. and so Following day after that, she was admitted, her port was placed, high dose chemotherapy began, traumatic hair loss begins right away. She had extensive limb salvage surgery. And I mean, it was like being hit by lightning. It was brutal. Wow. That's crazy. I think it yeah, I too. I mean, and that's the thing is like diagnosis is just so different for everyone. You think it's like a similar process, and it's not. And there's so many now that we go. back to our jo journey, there's so many steps that you you you think about and you're like, What what if I would have done this? Like would my child be here today had I done that? And I know it's a slippery slope to do that, but I think with us raising awareness and the whole reason we're doing this podcast is to open these conversations up so that maybe a family member that's going through something similar right now even, you know, something that looks like just a sports injury. Because most of these childhood cancers, they they look like sports injuries. can push harder because it doesn't hurt to push harder and get an extra scan, you know? Right. Because time is so crucial. And if if it's if you can get that diagnosis sooner and start treatment sooner, I mean it it can it can change the outcome. And for us, I mean, we spent literally a year trying to find out what was wrong with her and why she had this intense pain. And it's looking back, it's just excruciating. You know, and there are things I think we would have done differently. And, you know, that brings me to it's just such a hard decision to know where the best place is for your child's treatment. And, you know, I wanted to know what led you to your decision, stay local, move closer to a specialty care hospital. And would you still make that same decision today? yes, I would absolutely make the same decision to move to a specialty hospital, actually. representing Boston right now 'cause that's what we did. That's where we retreated. That's where I'm from actually. Yeah. What a what a incredible institution. And this is actually Sasha's sweatshirt. I love wearing her her stuff. But it is a night and day difference and I'm I'm grateful that we have the two like we're we're so different because you stayed local for a bit, then you went to specialty and we went straight to specialty. But I think so how do you know? I you can okay, for us and especially now having been with so many different oncologists across so many different states, it's very easy for me to know. But even on day one, that first oncologist that we talked to in Atlanta, I knew that wasn't an a Ewings expert. It was an oncologist and it was an oncologist that came in to talk to us about Ewings, but it was not an expert. The reason I knew, number one, it's a gut feeling, right? It's the way that they present themselves. It's the air that comes off of them. And, you know, when I spoke with her, she really didn't know much. She was basically like, This is the protocol. She was hopeless. You know, there was not a peep of hope in her. And it was actually quite sad because when she came into the room, Sasha after the biopsy was like really she was just so optimistic and she just she was smiley and she said Don't worry guys. We'll just cut it out and I'll be okay. And the doctor in front of her said, Well, it doesn't work like that and kinda like just brought the mood down and said and then went into like how bad the statistics are. And I remember at this point I think my mom and dad were also in the room. My mom was like, You could just I mean, they just took the air out they just sucked the air out of the room. And you don't you really can't have that around you. You have to be in a place of hope. So that instantly I knew that in my gut. She didn't walk confidently, you know. when you go into some of these hospitals that are specialty, especially these research hospitals, I mean, oncologists that come in, they're confident, you know, they're like, This is the first plan. You know, this is the even if they say the same thing, this is the initial protocol. Now, if you don't make it to the end, you know, NED or it comes back. This is plan B. Here's the fallback plan. by the way, here's the trials that are available to us if it if plan A doesn't work out. And they know about the trials in the US, they know about the trials that are international. true. That's what you want. You know, that's that's that's that's what you want in your hospital room. That's what you want it to feel like. So, you know, when we were there in the first place, in Atlanta, we just we f we felt hopeless and we just knew we had to get out of there and go somewhere else. And so, you know, at that point you just how do you know? You don't know. You don't know anything. I was I'm in a medical, I mean, I'm a medical professional for many, many years. I was in in you know, medicine for over a decade when Sasha was diagnosed. And I worked with cancer patients. I still do. And I still didn't know. I didn't knew nothing about pediatric cancer. I was more afraid of my child being in a school shooting than I ever thought about my child getting cancer. I mean, I I'm this is real life. This is I was more afraid of that than My child getting cancer. I never in a million years thought my children would get cancer. Ever. So, but anyway, so how do you know you don't? you just you have to look it up. Right now we have Google, we have AI. AI is so beautiful and it's so fast and it's you know, so just just Google it. Like, what are the top hospitals? And we will, with this podcast in the description, we will list all the resources that we think would be most helpful that include the national hospitals for for pediatric hospitals that are ranked high the highest and we'll have those resources available for our listeners as well. But yeah, you we just looked up who what the top hospitals were and then I started researching the doctors. so no, I would not change a thing. I'm very grateful we were able to get up and leave. Not everyone can do so. the only thing I wish I would have known, which I didn't, is clinicaltrials.gov. I didn't really get introduced to that until later. I was introduced by another family, but I didn't know that you could go into clinicaltrials.gov, type in your child's cancer type, and all the trials in the US come up. And the most important thing is when you click into that trial, you get the direct email of that research oncologist, which means you have a now a direct communication line with the most brilliant oncologist in that specific cancer type. And I didn't utilize that tool. Had I known, I would have started reaching out to them immediately and said, Hey, this is our situation. What do you recommend? Because they They might have said, well, you have to do frontline first, but then here are your options. Or they might direct you to who the best doctor they think. And these these people are brilliant. These are not just oncologists, these are research oncologists. So they know the regular oncology world plus the research world. and so that's a tool I didn't I didn't know about that I want to make sure parents, newly diagnosed parents know. Go to that tool, start reaching out. And these these doctors email, I haven't yet to have a doctor email longer than the next day. They usually write back the same day. It's it's Amazing. so no, I would not change a thing. Well, I mean, you and your family hit the ground running, that's for sure. And, you know, it's dizzying for a family to have to do that, but under the circumstances, it's so important. And I wish we had done the same thing. You know, our experience is quite different. We chose initially to stay local because we were trying to work full time and at the time I was a chief operating officer for a housing authority. I was a housing inspector and a hearing officer. So you know, I needed to be on site quite a bit, even though I could work remotely in some areas of my position. So I was really trying to hold on to that job because that job also connected me not only to my resources, but to insurance. And in the end I lost my job anyway after six months of Carrigan being in a nine-month treatment plan. frontline treatment for osteosarcoma. You know, I was told, well, we've been flexible as long as we can be. And I said, well, cancer doesn't work that way. so that was really unfortunate. But for us, it was one of our huge decision making factors was trying to hold on to that job. and so that financial impact of fighting cancer is a is a whole other podcast. That's a a whole other scenario. And You know, we were n trying to maintain our home, care for our pets, keep Carrigan connected to our friends. and early on we didn't understand the specialty needed to fight sarcoma cancer in in our instance. And we had consulted with Boston and Boston said, you know, their front line, which is their standard an initial standard of care, is exactly the same anywhere. so they said it, you know, stay stay home, stay local. But in the end With a community hospital for sarcoma treatment for us, it proved to be the wrong decision. the nursing care was phenomenal. I mean, they were exceptional. They treated us like family, but there were so so many other areas that were lacking. in hindsight, we would have headed straight to a specialty care hospital like you did. and I mean, this isn't a directive, of course, for our viewers, but it's our experience. And you know, all of those things that you talked about that you get connected to right away is so important. and I'm I'm just interested to hear what your experience is in the sense that what you found was the biggest difference between the smaller hospital, the local hospital, versus that specialty care hospital. Yeah, I think there's definitely a huge difference, even if the front line is the same. There's a huge difference. But before I get into that, I do want to touch up on this because again, we have such you and I have almost the opposite journey decisions. But I get asked this because, you know, both of us are in the cancer community, we'll continue to be so. We have a lot of families that reach out to us. And I get asked a lot of questions about what I would have done differently. And it's very important for listeners to know I can answer that in two ways. I have two ways in answering. If I could go back in time and I knew, like if if the thing was you go back in time, but you know Sasha's gonna die, then yes, I would have stayed local. I would have had her eat all the candy in the world and I would have done all that because I knew she was going to die. And so I would want her to be by her friends, by the family. I would have done that. But if if if someone told me you could go back and redo the path and you might be able to save her. Now my decisions are completely different. I would have not only gone out of state, I would have contacted all these trial coordinators, I would have done the integrative times 10. You know what I mean? So again, that's the thing. And that's why I say there's really no right way to do the journey. You have to make these decisions in the moment while you're spinning in a tornado, and you have to take all these factors into play. Yeah, I'm not gonna be able to wal walk into work tomorrow. How is that gonna affect my income? This is about to be very expensive. What about what about my child? What about them not seeing their friends and their family? What about them having to be uplifted and taken to hotels and living out of hotels? So all those and then that's why the decisions are so different. And I think it's just so important for us to talk about them so others can learn and and and at least understand what what how what happened to us when we made that decision, what we feel about that path. Right. Yeah, I agree. And you know, the direct act. access that you discussed, you know, when each moment counts and everything is urgent, you know, it's so imperative to have those direct discussions. And, you know, our local hospital now, they have a sarcoma center. They didn't have that back in 2019. You know, Carrigan was diagnosed just before the pandemic. her relapse was caught late because her scans were late. And again, granted granted it was the pandemic, but we're talking about you know, a deadly cancer. And you know, I'm not I'm not trying to say anything about community hospitals because they're a level one trauma center. They do incredible things. I mean, they've saved the lives of of people that I care about. So it's not about that, but when you talk about that specialized care that you need, Boston was a whole different scenario for us. We went there for amputation. we were being told locally that what they were seeing in Carrigan's lungs was scar tissue. And we were told that repeatedly. Boston immediately said, We don't think it's scar tissue, we think it's metastasis. And it was. So we lost all that time for treatment. her care was so complex and she just needed a skill set above what at that time, anyway, because there wasn't a sarcoma center in the hospital that we were getting. and You know, so for us what we would do differently is we would we would definitely go directly to a specialty hospital. You know. Yeah. I think yeah, it's definitely night and day. So even if the protocol is the same, and now I've had experience too, because I I went to s we went to specialty, then we kind of went to local, then we went to specialty again. And it's night and day. So even if the protocol is the same, the way you get treated is completely different. The scans and imaging are fast. They're better because it's newer technology. The surgeons are top notch. Like, you know, I don't think people realize when you're dealing with sarcomas and some of these cancers, there's a lot of surgery. There's removal of, you know, Sasha had three ribs removed. Carrigan had, you know, ampute you know, was amputated. I mean, this is serious surgery. Sasha has her skull taken, part of her skull taken out. You need to be in the best hands. And that's what so aside from the protocol being the same, you have to do that while you're doing the protocol. So that's why it's so important to be. there access to blood products, which I know we need to have a whole podcast on that because you are really big in that community. you know, I have been in hospitals after Boston that were like local and they wouldn't even infuse Sasha because they said we don't have enough blood products and she hasn't met the minimum yet. And like you don't have that in Boston. If you are low, you get infused so that you can breathe better and feel better and I didn't know that before. I had no idea there were blood product shortages at local hospitals. There are. It's a hu it's a huge thing. scans, you hit you hit that a hundred percent. So I we have parents and friends, and I'm sure you do too, that are even in the relapse setting, and when they're even in a relapse after having gone through having cancer and they're in a local hospital and imaging looks weird, for some reason it seems more often that local hospitals tend say, It doesn't look like it's sarc you know, it doesn't look like sarcoma. Whereas when you're in a specialty hospital, like a a huge cancer center, the first thing they say is, Let's rule out that it's not sarcoma. Correct. Which is what you experience and I'm distinction. It's a huge I mean that's that's a big difference. It's huge. Yeah, that's huge. And then just the air, like the air, the people, I mean, it's again the air is crisp. There's confidence, there's hope. And oftentimes there's ABC right there on the spot. They have the a lot of them have the trials right there. The minute we got to Boston, and we were in Atlanta, Atlanta's not considered like small local, but they're not definitely on a Boston center. The minute we got there, I mean, they did genetic testing, they did tumor testing, they basically are like, here's all the things you can enroll in. It's free, just enroll in them because you started getting data on your tumor. We didn't have that access at a local hospital. So yes, there is, in my opinion, a huge difference. Yeah. I agree. And you know, I'm gonna just reiterate some of the things that you said because because I feel the same way when we switched after a year and went to Boston. having that newer innovative technology, more defined imaging, higher skill set in many instances, direct access to clinical trials. clearer, more concise coordination between disciplines. That was something that was new for us. You know, we we at times would have two different disciplines with differing in opinions sitting there hashing it out at the bedside and I'd say, listen, it's it's great that you're trying to solve this, but do it in the hallway. You know, I've got my daughter sitting there with a scared look on her face listening to, you know, two different opposed, you know, opinions. And we didn't get that in Boston. We got a c clear, concise conversation at the bedside. you know, I I feel like they meant what they s said. And if they said we're gonna do this on this specific day, the timelines were followed, which which was a new experience for us too in many instances. And, you know, if I feel like if we had gone there sooner, like I said before, I think it would have changed our outcome, you know, which is It's it's sad to think back. You know, I can my husband and I, we we go over things a million times in our head. How can you not? I know we did the best we could at the time with the resources we had. We didn't have the availability of of AI like it is now back in 2019. I think it's an amazing tool. Like you said, I hope families really utilize it for the research. but I'm I'm hoping that people hearing our story today Can just if somebody say, what did they say on that? What what was their reasoning why they did this? You know, it can be helpful. Yeah, and you know, I think we have to be kind to ourselves. Daniel is pretty good. That's my husband. Cause I because I was really much the driver of all the decisions for Sasha, it's very heavy on me, the decisions, because, you know, it wasn't till ten hours before she died that I actually thought she would die. I always thought we would make it. And so, but he has a good way of talking me through that and just reminding me to be kind to myself. And he'll say stuff like, You don't know. You might have you might think that was the you know, making a different decision would have extended her life, but what if it would have made it shorter? You know? and I was like, You're right, you know, so we don't know, you know, we just have to be kind with ourselves. We're man. All these families, they're just what they're doing to save their kids is just incredible. And no one knows what they're doing. I mean, including the oncologists. There's no cure for these things. There is not. The oncologists don't know either. They they wish they knew, but they just are like, let's try this, you know, let's hope for this. Fingers crossed, you know, but yeah, we just have to be we have to be very kind to ourselves because we're amazing and yeah, thank you, you know. Yeah. Well I think you're right. I think that's an important note. We've we we did the best we could every single day for our daughters and I know they're proud of us and now we're doing the best we can for other people's daughters and their sons and their families too, putting information out there. Some people will agree with it, some people, you know, will embrace it and I think Just by the fact that we're willing to put it out there in in the hope of of helping somebody is is what it's all about. That's the important part of it. Yeah. And we're doing it in memory of our girls. Absolutely. I agree. So some of the things that you think are helpful to families since we're talking about that when they're first diagnosed or what can kind of prepare them for what's next? What do you what do you think would help them make that decision since we've talked about kind of two different schools of thought of of where to be treated? Yeah, I think okay, well I think if I would have if I would to go back, there's definitely a lot I would do differently still, even though like I'm happy with the decision to move. I think the first year you get very scared. you you almost get scared by everyone into just like kind of like sitting just Just sitting still and like just do the frontline, you know, keep the weight up and just don't worry about anything else. Like eat the eat the ice cream, eat everything, don't worry about supplements, you know. And so I think if I were to go back knowing everything I know today and everything that we've gone through with all the relapses and all the families that I know and everything that's going on in the community, I would have thought like we were in relapse from day one, which means you have your protocol, you know you're gonna be on it for a year. Don't just sit like a sitting duck and be like, I hope. It doesn't come back. Go ahead and do the things you want it to do, whether it be a better diet, whether it be supplements, whether it be infusion therapy, oxygen therapy, all those things that you read about that maybe could help, that definitely don't hurt, you know, do it then. I wish I would have reached out to all the clinical trial coordinators because again, those clinical trial coordinators are like a different breed of oncologists. They are in the lab staring at sarcoma cells. The things they see is unlike what a normal oncologist sees and who they know, the network of connections that they have. Had I started reaching out, because right now I have this huge list of the top oncologists, the top researchers, all these people that I've met over the years that I built mainly starting at at first relapse, which is starting after the first year. Had I started a year earlier, I think I would have put us a step ahead, if that makes sense. And again, I was kind of sitting like a sitting duck because everything is new. You've moved your job, everything. And so you're just kind of like, okay, I'm just gonna do the first protocol, not worry about anything else. But now that Sasha is not here today, if I could go back and increase maybe even a small percentage of chance that she would be here, of course I would do that. So I would just say don't be a sitting duck. And, you know, after you lose your child and you have this emptiness, I mean Look, I get it. We barely slept when we were doing the journey. But if I could go back, I'd be like, just give me two hours. I just want my baby to be here. You know? So I would definitely do that differently. and then really don't be scared. So thankfully we were pretty bold in how we just went to the ERs, but we had two instances where Prior to her bone marrow transplant, we actually got a call from New York and they said, Your insurance doesn't cover this, don't come. And, you know, I talked to my family and like my parents, they were like, I don't think you should pack everything up and go to New York. And then I talked to Daniel and he goes, If your trajectory is to get this bone marrow transplant, we need to be in New York. We packed up this huge thing of food and clothes, and we showed up in New York in the morning. We're like, We're here for the transplant. And they're like, well, if your insurance doesn't cover it, I'm like, We we're you know, and because you're there and you're sitting in the lobby, things move. They move. And again, it's one of those things, had we not been there, maybe we wouldn't have done the transplant. Same with Cleveland Clinic. She had surgeries scheduled. We arrived to surgery, they tell us that our insurance doesn't cover Cleveland Clinic. The neurologist in the office, in the middle of our consult she's leaving the room because people are calling in there and saying they're there without insurance. And she comes back in and she's like Baby, do you have symptoms? And she Mustacha's Yeah, my head really hurts. She goes, You're going into surgery. Again, chills right now. Because had we not, had we been like, our insurance doesn't cover, we wouldn't have gone to Cleveland and she wouldn't have had that surgery to remove that skull tumor. So again, just be bold, don't worry, make those moves, get to those places in person. And I'm just telling you, I've heard so many I've I I I have yet to hear someone getting somewhere in person and being like turned away. But this is a whole new podcast episode. I know. No, I think, you know, when you talked about treating the beginning part of the journey as though as though it were relapse, I just think that's an incredible statement because living it, I know exactly what you mean. And I wish that I had been given that advice. I wish I had done all of those things. sooner. Not that we didn't get second and third opinions right away, but when we were told, frontline is frontline, do it locally, we listened and we did get kind of locked into that box of, okay, well, we're not gonna push too much. But, you know, all of a sudden she's relapsed, she's metastasized, and it was a whole new ball game. We went into a completely different mode and we never took our foot off the gas. and I wish we had been in that mode sooner. Truthfully, I really, I really wish we had been in that mode. you touched on insurance. You know, that's another one. I think it it keeps families sort of stuck where they are because insurance doesn't transfer across state lines. We were lucky that Carrigan's insurance was taken by Boston, but the problem was there were still all of these disconnects and she was always getting dropped from insurance. And, you know, we had to get her back on insurance. And, you know, again, whole other pod- podcast. We're gonna have to rest up for that one. Because insurance is is insane the amount of time and energy that you spend. And it takes you away from your child, really, which which is what I used to hate, is that I'd be hours and hours and hours on the phone and emails and everything I could to try and get her reinstated or, you know, to try and get you know, what was coming up covered. And, you know, I didn't realize that the the doctors in those emergent situations can do a medical override. And it seems like That's what they did for Sasha and that's what they did for us as well. And because it would be the night before and we're getting a call from finance at seven at night saying you can't come in for surgery tomorrow and Carrigan's looking at me like, They said if I don't have the surgery, you know. So, and then luckily her oncologist would would do a medical override and we'd be able to get the surgery. And then you just sort of fix the fallout after, you know, so that was crazy. But it can be soul crushing when when all of a sudden you hear that insurance isn't gonna cover it. So yeah, I wouldn't I wouldn't let that be a barrier either. And, you know, all of the things that seem like they're barriers, just keep going. Just keep getting around them. Yeah. Yeah. Don't worry about them. They're just noise. You know, you just have to be focused on that cure. And and I think I think definitely insurance is a big topic and there's other Like for instance, I didn't know this, so my husband got this. It was called hospital guard, and it's like this attachment to any insurance plan. It's not that much a month extra, but it what it did is every time we were admitted, it would pay out cash five hundred dollars a day on your admission days. That allowed us to pay for these hotels, to pay for food. I didn't know about this and you know, actually funny story was before Sasha's diagnosis, when Daniel and I were picking plans, I told him Get the crappiest plan. I said, We never go to the doctor. Like, we literally, we don't go. I was like, just get the worst plan. I don't like even want to pay monthly fees. Like just get whatever. And at the time he was like, No. And he did the total opposite. And I cannot tell you, I must have said this like ten thousand times in the past three years. How many times I sat at the hospital, like literally on the floor while Sasha was in surgery and saying, Thank you so much, Daniel, that you didn't listen to me. You know, thank you. Because we had this l you know, this plan that was helping us be in these places and how important to me it is to have a multi state plan. Not everyone can do that. Right. But I think I know we're gonna have a lot of guests. So it's been me and you, but I know we have a list of guests and there are specialists we're gonna bring on and talk about this too. Right. 'cause I don't even understand that side of it. Like if you don't have a multi state plan, but again, the stories that I'm picking up is even if you don't have multi-state, when you get to those places, they will treat you. And so sometimes if you feel like you need to go that it might save you or s you know, save your child or get you closer to a cure, just go and like you said, deal with the fallout later, but at least like they're getting treatment. That's right. Yeah. That's right. And use your your resources. I mean, we've tapped into our congressman before. We've had friends that have worked in state government that have made phone calls on our behalf, and other children's behalf, just to try and look into it to say, hey, what's where's the disconnect? What's going on? Why did why do they not have insurance all of a sudden? Carrigan being permanently disabled, being terminally ill at one point and an amputee, but having to re-qualify, you know, every year that she's still disabled and would have to appear in person at the Social Security office in her wheelchair on oxygen, saying, I'm still disabled. I'm you know, it's some of it that the hoops that you go through and those are things that that you and I at some point can probably get together and and lobby for change in so many areas like that that we can identify that are just really so time consuming and so unnecessary, some of the red tape. And, you know, I think it's those barriers that really frighten some families from taking the next steps. And you know, I I know it certainly did with us in the beginning. It sure did. Yeah. And I do, I really want the family of Lumina, which is us and the community and everyone that listens in, like our email is gonna be listed in the description and we've been through it and we have so many connections. And if you need us, if you want if you have a question, like reach out to us, you know, send us a message, send us an email, like you and I will do whatever we can to connect them. And we don't know all the answers, but we sure know a lot of people that do. And it's like incredible to think that Carrigan was like lobbying. Again, these Beautiful children. They're doing so much while they're fighting, while they're sick, while they're throwing up one second and on, you know, a microphone the next. It's unbelievable. And when you see them do it and you think, I can I can do it too. Like I know, you know, it's it's again you see healthy people and they don't make time for it. And then you see these kids that are like suffering and they're hurting and they make time for it because they know how important it is for the next person. And that the the scary thing is cancer rates are through the roof. The amount of people that are being diagnosed every day is absolutely frightening. And I think it's I honestly think it's like a national emergency. I think every single person should be aware and all of us should be speaking up like, hey guys, this needs some serious attention. Yeah. You know? So I do too. I do too. It's incredible, you know, to think that here we are and you know, we're we're doing it. We're on podcast number two. We're excited about it. It's childhood cancer awareness month. So I think it's the best time for us to have launched this endeavor because we can really try and help as many people as we can. And also, like you said, bring in the people that can that can help other people as well. We have people that just have incredible experiences to share. And there might be new families that are diagnosed out there that just have questions. And hopefully this at least sparks their interest to say maybe I should dig deeper. You know, maybe I need to to make those phone calls and send those emails and, you know, do some of the things that we've done. So Yeah, absolutely. Well, so this podcast has had a lot. I think we definitely You know, I think we covered diagnosis, how we lived it pretty well. I think it's it's a crazy journey. There's a lot of resources. like I said, we'll definitely make sure this podcast will have a full description and all the links that we think would help people, especially with the the leading hospital, so at least they can go into the links and see what the the nationally ranked hospitals are. and then we're always here to to support and and lead people in the right direction if they have questions specifically for us. Yeah. Exactly. And thank you, everyone. Thank you for the Lumina community. It's just amazing. Much support. The reception has just been incredible. And I just wanted to thank Aidan McDonald. He's Carrigan's life partner, best friend since fourth grade. And he's our producer in memory of Carrigan. He's editing for us. And my son Sawyer, Carrigan's brother, he's been working on a website for us that hopefully we're gonna launch in the next week or so. so that's really exciting. And he's doing that in memory of his sister. So it's just beautiful to have us all coming together to make this possible. Yeah, absolutely. Well, I guess that's a wrap, and I can't wait for episode number three. All right. Stay in the light, everybody.