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Crafting Survival
Crafting Survival is packed with gripping real-life stories, expert insights, and powerful lessons. We will hear from real people who have faced some of life's toughest challenges and people who have great knowledge to help us craft our survival.
Crafting Survival
The Lump in My Head: Beating Cancer at 9 Years Old
Imagine discovering a life-threatening condition at what was supposed to be a routine optician appointment for your child. Join us as we sit with Jeremy, Wei, and their brave son Philo, who share their gut-wrenching experience moving from London to the Bay Area, only to face a harrowing medical crisis. From the initial shock of Philo's blurry vision escalating into an emergency room visit, to the emotional turmoil of multiple brain surgeries, this episode is a testament to resilience and the power of informed decision-making in the most trying times.
Ever wondered how families cope with the labyrinth of healthcare systems while seeking the best possible treatment for their loved ones? Jeremy and Wei provide a candid look at their relentless pursuit of advanced medical care for Philo, navigating bureaucratic hurdles, and the stark differences between the UK's and US's healthcare approaches. Their journey underscores the importance of persistence, effective communication, and the willingness to seek second opinions—even internationally—when dealing with a life-altering diagnosis like a high-grade glioma.
But their story doesn't stop at medical interventions. Discover how Jeremy and Wei's commitment to a holistic approach, including significant lifestyle and dietary changes, played a crucial role in Philo's recovery. From grappling with the financial burdens of international genetic testing to embracing the power of nutrition, this family's journey is an inspiring narrative on the importance of perseverance, hope, and the incredible strength that can arise from adversity. Join us for this heartfelt episode that not only explores the complexities of medical care but also celebrates the small victories and unwavering spirit of a family determined to fight for their child's future.
This is Crafting Survival, a podcast that is not just about cancer. It's about the challenges in life. It's about surviving, overcoming, developing plans, speaking with survivors, people who have dealt with cancer, dealt with other challenges, experts in the field of medicine, science, innovation anyone who has dealt with life's challenges. This podcast for you. Sit back and enjoy Crafting Survival. Welcome to the show. I would love to introduce Jeremy Wei and Philo to our podcast, crafting Survival, and they have an extraordinary story that we are excited to share with our audience and love to just get going. So, jeremy and Wei and Philo, where are you all from? First of all, and let's talk about how you ended up in the Bay Area of California.
Speaker 3:Sure, so nice to meet you. So originally we've kind of moved around a little bit but we were for the past kind of 15 years or so, based in London in the UK, where we originally went for school and ended up just kind of staying and we were both working there. So Philo was kind of born and raised in London and I guess what brought us to the Bay Area was kind of a, I guess, what they call an accidental discovery. So we had a normal Friday afternoon I think it was Philo's second day of school and we had an optician appointment that was scheduled because we noticed that his vision seemed to be a little bit worse than it was before and we weren't really sure why. So we thought maybe he might need glasses.
Speaker 3:So we booked an appointment at the optician and after school I brought Philo there. And after school I brought Philo there and within a couple minutes of the examination we knew that something was wrong because the optician just kind of stopped it and said Dad, you need to go to the emergency room, without really giving me other context on why. So obviously he took his advice and went to kind of the emergency room. He gave us kind of a letter to give to the hospital so that they kind of, I guess, knew to bump us up. And that's kind of what started a journey for us which ended up bringing us here.
Speaker 1:So it's just a normal school day. Everything leading up to this point in time was normal, other than you know, some blurry vision.
Speaker 4:And what grade in school was Philo in?
Speaker 3:uh, he's in. He's in fourth grade now.
Speaker 1:Uh, and this was, I think, last year, right, so it would have been third grade yeah, so we're talking like this is the last year and a half of your life, right of just kind of right.
Speaker 1:Yeah, this was uh september of of 2022 right during or I guess right after kind of the whole COVID, you know, chaos and lockdowns and all of that. And now and now this Just going back to Wei and Jeremy, what do you, what were you doing in the UK, like what are your professions or what you know, just out of curiosity, what do you, what do you guys do I work in?
Speaker 1:tech, so I work for a US-based company, and I work for a us based company and uh I work for jewelry company so you're, you're used to probably traveling all over, right and uh, getting over and and to the us was was probably fairly easy for you to figure out and and do that. Um, I think it's and these are some of the important points too, as we talk about other people that may not understand how to get from point a to point b um and part of crafting survival. So forgive me if I keep backing you up a little bit to learn, you know kind of how you guys were able to figure out you know what the story that we're about to tell.
Speaker 3:Yeah, I think on that point, like I lived in the USs before, which, um, obviously made it a little bit easier for us to uh to come over, but yeah, I think that was a consideration now let's fast forward to this day.
Speaker 1:Um, and you're told to go to the emergency and you don't really know what's going on, other than this was supposed to be a normal optometry kind of appointment just to figure out what why he had blurry vision. Where were you in this? You know phone. You know where do you come in on this?
Speaker 5:particular day At work, at work, I was at work and then Jeremy said to me we're going to an emergency room. So I just I just left the work and then just met them in the emergency room. And then, and then I think after two hours, they just sent us before and went to see the doctor. And then doctor was testing him and she said his balance was off. He's like he's off, Everything's off. She just picked us aside. She was like it's not good news, we don't know what we're talking about. She ordered a CT scan and then said that's what I'm suspecting. And then you know, we'll let you know. So then Jeremy went to CT with Fido and then they you know that's how they found the mass.
Speaker 1:So when you were thinking like things are off, like what you know, I mean as parents, you know Matt and I are both parents. Matt has four children. I have five children and you know what we're talking about here is like our as a parent are like one of our worst nightmares, right Of. So what was going through your mind at this point? Were you like you know what could this be? Do you have? Did you? Did your mind go to the worst place? Or are you thinking still like not a big deal? I mean not in a big deal because you're in the emergency, but for me.
Speaker 5:I I thought it was, it was a dream, like it was just not real. So I I don't know how to process it. It was just like a kind of completely blank, like whatever they tells me, I just kind of like I don't even know if I hear anything, I just like something is wrong. That's all I have in my mind and I just have to keep going. Whatever they say, just keep going. You know, like they said okay, we're gonna do surgery, or like a okay. And then there's like no, no, yes or no, you know we have to do surgery, like right away and you still don't know what it was.
Speaker 1:There's just a mass and we have to do surgery yeah, basically.
Speaker 3:Yeah, I mean like leading up into the point where they did the ct scan and and saw everything, um, you know, I think similar to way it was just really focused on on him and trying to make the whole experience as like nice as it could be. So it was kind of like laughing, joking around, just trying to keep the mood positive while the doctors ran through their tests, um, because we didn't want to cause alarm and make the situation scarier than it needed to be. And then, kind of once they took us into a room and by this point it was probably maybe like 11 o'clock or 10 o'clock at night. They kind of just showed us a scan, said that there was a mass there.
Speaker 5:Oh, they didn't show us a scan.
Speaker 3:No, they didn't show a scan, but they told us what it was and basically they kind of walked us through what the next steps would be, and they said that they were going to be transferring us to another hospital that had a special neurosurgery unit, that we were waiting on transport ie an ambulance to bring us to the second one, transport ie an ambulance to bring us to the second one and that he would be going into surgery at like 7.30 the next morning. So you know, that basically started kind of a pretty sleepless 48 hours where we had gone from. I mean, father was still in his school clothes and you know, and part of the tough thing as well for him was because I think that they had expected that he might need to go into surgery, so they wouldn't let him drink any water, they wouldn't let him eat anything, and so you know, eight years old being picked up from school in the afternoon, having to wait, effectively it was kind of like, you know, I don't know that's the hardest part 15 hours or something like that without eating.
Speaker 3:So you know, I don't know that's the hardest part 15 hours or something like that without eating. So you know it was tough and obviously you know, just having those conversations were kind of scary but it wasn't really sinking in because we had so much to do right in front of us that we didn't really have any time to process or react to. We just kind of had to do what they were saying. So it's waiting for the ambulance and then, once you get to the ambulance, you go to the other hospital. And then this was, I think, a Friday night in London and when we got to the other hospital it was kind of chaotic. We're in the emergency room. There was people coming in with all sorts of injuries which you know you could expect in a big city on a Friday night, and it wasn't really, you know, peaceful or planned out or expected. So we were just trying to keep the mood light as we go through it, while also, you know, telling file a little bit about what was happening. But it was, it was definitely scary.
Speaker 1:Yeah, and you must have been sitting there going. What are we even doing here at this moment in time, you know? Or rushing? So is there just out of curiosity, if they rush you to surgery, because we see this a lot in cancer and diagnostics, is a rush off to surgery? I mean, was there any point in time you're like wait, do we put on the brakes or do we? Why the urgency? In a sense, right, if he was just balanced and blurred vision, you know why would we rush now to surgery?
Speaker 5:they never explained to us until the next morning, when he was already down in the theater. And then the surgeon came to me and then just, you know, we don't even know we have. So he said that it was Saturday morning. He said there's a reason they call me to come on Saturday. I don't know the surgeon, I have no background, nothing. And then and he just looked at me, he said you know, you don't have a choice. That's what he said. You don't have a choice. He said you know we need to give him the best chance and then just let me do my job. And then I don't know what to say, like I literally he said if you don't, you know. He said if you don't, you're looking at days oh, wow yeah, so he.
Speaker 3:What they said to us was that the the mass was very large.
Speaker 5:I think it was about the size of a tennis ball.
Speaker 3:And they said that it was causing a lot of pressure, which is what was impacting the vision. And that was kind of. The first clue, back to the optician, was that his optic nerve was swollen because the pressure in his head was kind of pressing up against it, and that's something that you can see from an eye exam which we had no idea that you could kind of tell that from from before. Um, and, yeah, I think, similar to a way said, he did kind of explain to us what the, what the issue was and mentioned that it was uh, it was very dangerous and that he, although he was asking for a consent, he's like you really don't have much of a choice here because, like, we need to act now and you know, with um, I guess what they saw in the scan and plus the, the optician exam, um, it's a very dangerous situation and it was one of those things where they they felt that, you know, delaying at all um could just be a huge risk. So that's why they moved for kind of an immediate surgery.
Speaker 4:Yeah, seemed like the right decision yeah.
Speaker 3:Yeah, it definitely was. I think that right until we kind of wheeled him into the surgery room where obviously we weren't able to go anymore, and then we just had to kind of wait, I think that was probably the moment where it really just kind of hit us, because that was the first time where we had a moment to ourselves to just kind of stop and think about what was actually happening.
Speaker 1:And put your child in someone else's hands. Yeah, that'd be the worst part.
Speaker 3:Waiting, yeah, I mean, you know I think, even even leading up to it, Philo was, I think, like he was. He was very positive.
Speaker 2:So when I was on the ambulance, the first thing I said am I going to be on the news?
Speaker 4:Were you, were you on the news?
Speaker 2:Yeah.
Speaker 3:Eventually I was, but I think that that was like a good example that like throughout the whole process we were just trying to make every step kind of as fun as it could be. It's like, oh cool, like we get to ride an ambulance, like never done that before also when I was in the ambulance I was like, is that us, those sirens?
Speaker 2:because it felt so it was so quiet on the inside. I was like, was that us? Because you said it was us right and like I was like what, that's not us, it's not possible. It can be us right because like from the outside that they're, they're super loud right so everyone can like the whole street can know. But but then after like I, I understood.
Speaker 1:Uh, that's funny. You want to know something funny, philo? Yeah, mr Matt and I have an ambulance that's converted into a camper RV, so we know exactly what you're talking about. Inside it's really quiet and Mr Matt put sirens on it. And then there's Ghostbuster stickers on it. It's kind of funny that's our Ghostbuster mobile. I love ghostbusters we'll send you a picture I watched it once.
Speaker 2:I watched like half of the first movie, like where it cooks eggs by itself and with the librarian where, like all the books flew out, yeah, of everywhere yeah, I remember that that's a fun movie, fun movie.
Speaker 1:So so you're, you're now at, you know, uh, he's in surgery and you're waiting. How long? How long did you have to wait?
Speaker 3:the first one was about 12 hours yeah, so it so he got in at. Yeah, I think he went into the operating theater at around 7.30 in the morning.
Speaker 5:Yeah, and then probably just started at 9.30, 10, around that time and then he was out just before 1 o'clock in the morning.
Speaker 1:I'd say Wow that had to have been the longest hours of your life.
Speaker 3:It was a very long day and that was the first of three surgeries over the next three weeks. It was basically one surgery a week for three weeks because it was in a hard to reach location. So our surgeon used kind of an endoscope and kind of specialized in difficult to reach tumors and also tried to be minimally invasive as well.
Speaker 3:So yeah, so that was kind of an intense period of three weeks, which ended up turning into almost two months, of just being in the hospital nonstop, every night. And again it was all just out of the blue.
Speaker 1:You had at one point told me how many total hours of surgery that he had undergone by the time that you were done 35, I think in total 35 hours of surgery total.
Speaker 5:That was the first three. So he had 12 hours and then the second one was about six hours. So the surgeon said he doesn't want to push him too hard, you know, because the first one was 17 hours, 16, yeah, he developed 16. So the first one he lost like 250 ml of blood and then the third one he lost about like 400 something. So the doctor told me so then they have to get all the blood ready for him. So because of the you know, the tumor, there's a lot of bleeding.
Speaker 5:So obviously you know you just don't hear anything and during the surgery they don't tell you what's going on. And then you just keep calling the nurse and the nurse said we haven't heard anything. So you just keep calling the nurse and they said we haven't heard anything. So you just kind of waiting. And then I remember the last one, by 11 o'clock I haven't heard anything. So I call every half an hour, probably by one o'clock, there's still nothing going on. By 1 30, I'm just going in, so I just went, and then we just sit there. And then 2 30, they said that he's coming up. Mr matt thinks that he's superman.
Speaker 1:Mr Matt thinks that he's Superman, but I think, philo, you're Superman.
Speaker 4:Yep, it's pretty amazing yeah.
Speaker 3:Yeah, he has some good questions too. I think before the first surgery he was walking down to the operating theater and there was Walking down.
Speaker 5:No, you're holding-.
Speaker 3:Yeah, you're walking, and he was following the neurosurgeon and he was asking him questions. He's like so, um, have you done this before?
Speaker 1:and that's a great question.
Speaker 3:Like yes, I've done this before. He's like with a kid my age. And he's like, yes, with a kid my age. Um, there was a girl well your age all right, you're your age. Yeah, when was the?
Speaker 2:last time I, I, you, done this. Yeah, he's like when was the last time you did it?
Speaker 3:like okay about two. He's like when was the last time you did it? He's like okay about two weeks ago.
Speaker 5:And he goes pretty good.
Speaker 3:Yeah, pretty good.
Speaker 2:So he had some good questions leading in and he I mean his attitude throughout the whole thing was just, that was when I was eight, right? Yeah, it was like when I was seven, because it's 2024.
Speaker 5:But it's 2024, but it's not my birthday just yet. Yeah, yeah, he also, because they asked him do you have any questions for me? You know. And the surgeon asked him um, do you know why you're here? He was like yes, what did you say to dr, he said? He said, yes, I know, because you've you found a lump in my head and you're going to take it out. So they didn't tell us until until much later yeah, I think it was probably until like after the third, after the third surgery, so, and then they brought us together.
Speaker 5:It was like god knows how many people in the room, so there's like a their oncologist and there was, uh, the surgeon. There was like a somebody and there's like their oncologist and there was the surgeon. There was like somebody and then there was a bunch of nurses, social workers, somebody. There's like probably around 10, just about 10 people.
Speaker 3:Yeah, there's about a dozen people.
Speaker 5:So we don't know who they are. And then they came. They said you know they don't show us anything. They said you know, we have our pathology results back and it's, you know high grade't show us anything. They said you know we have our pathology result back and it's, you know high-grade glioma and grade four. You know that's what they said to us. So we're like okay, and then they said that we're just going to, so the next step is radiotherapy and then you know temozonamide and that's what we're going to give it to him.
Speaker 5:So because before that I did a lot of research on all sorts of uh, you know, brain tumors like all, like any kind, so I was guessing what can be from what the surgeon was telling me or how it looks like you know what is, uh, you know like there's a process of what's a possibility.
Speaker 5:So I kind of narrow it down to feel of them, what is most likely in children around this age, when they, when they told me and then you and then Jeremy didn't know what that means he just heard Wakeford as only anything he heard.
Speaker 5:So for me I kind of have an idea and I kind of have an idea of what kind of treatment there might be, but it was still shocking because I was hoping it's something different. And then, and then that's what they gave it to me. And and then I, you know like, and when they said, you know, we're going to just give him the temozotamide and then also the, you know, radiotherapy, so I was thinking, is there any other possibility, that you know other options? So and then that was a question probably right after meeting with them, and then we discussed with uh within ourselves obviously at that time Jeremy doesn't know any of that, so he doesn't know how to respond to me. And then then the doc. So I that's the time I asked the doctor for the pathology, result in which that wasn't given to us.
Speaker 1:What made you think?
Speaker 5:literally was verbal.
Speaker 1:What made you think to ask for the pathology results?
Speaker 5:because that's not something that people normally even think to ask for because, uh, and that time it's just, um, you know, because I was reading all the, all the information, I know there is, uh, you know, like there is uh, um, like a peptide, peptide, peptide, and there is like an immunotherapy, and then all those information, and then they need, you know, all those like studies, like a DNA kind of testing and then sequencing, and then to be able to make those things. So, you know, I want to know if that's a possible, you know, possible treatment for him. So that's another reason I was asking for it, and then that was just a struggle that all they gave it to us is the pediatric hybrid glioma, grade four, and then they said wild type. That's all they said.
Speaker 3:Yeah, nothing else In the context of this as well. I think by the time we had that meeting we had already been in the hospital for probably a month For about six weeks.
Speaker 2:That's spending every night, a month and two weeks.
Speaker 3:That's spending every night in the hospital.
Speaker 3:You were saying with me every night yeah, I was sleeping in the hospital every night. Yeah, I was sleeping in the hospital, um, and then we'd kind of like do a like a like a shift swap, where you know we would come in and then I would go home and shower and then spend a couple hours and then come back, um, yeah, and basically in in all the rest of the time that we had we were still trying to figure out what was going on. So, kind of back to to your point around why we asked for it, uh, we just wanted to try and understand what was going on and you know, a lot of the information kind of comes in little drips, like you don't really know what's going on, and I think there was definitely, um, a strong, just urge and desire to try and do something, because it can easily be a very kind of powerless situation where you, you feel like you're kind of at the whims. Yeah, buddy.
Speaker 2:One night I was, I, I, I, I fell asleep at two o'clock and mommy was there at two o'clock. Is that yes? That was after surgery yeah, it was two o'clock in the morning. She was on high steroids she wasn't gonna leave you?
Speaker 5:yeah, he couldn't because he was on dex, so he was really high, you know, making me very alert.
Speaker 3:So I was there until he came home and I was leaving him at home, yeah, but I mean for that whole time in the hospital kind of six to eight weeks it was pretty much every spare moment was just spent trying to research stuff online and learn what all this stuff meant was just been trying to research stuff online and learn what all this stuff meant.
Speaker 2:Well, once I went to bed at two when I was in the hospital, and then I woke up at six, which is four hours, and I also, uh, went to bed at 12 and woke up at four, which is, which is another four hours.
Speaker 3:He references this when he wants to stay up late. Yeah, I was going to say I can do it, I can do it.
Speaker 1:I can go to school in four hours of sleep. I can do it, Mommy.
Speaker 4:Sounds like a college student.
Speaker 1:Yeah, right, yeah, he's getting ready so well, one of the things I tell people all the time, number one is get your pathology report, because that's what determines your care. You know, going forward, 80% of what happens in people's care is that pathology report and whatever that says or doesn't say, and you go, okay, well, maybe there's more that we need to do here, and so, a way, I kind of remember you telling me that you recognize that you needed probably more testing, like you needed to understand more that there was something not done which I believe you said he needed and hadn't had. It was DNA sequencing.
Speaker 5:Yeah, I think when, finally, it was probably another six weeks after they gave me the pathology results, which is 12 weeks.
Speaker 1:That's a long time.
Speaker 5:Which I go to the doctor, uh, the nurse, the oncology nurse, like every single day, like literally I was shouting at her. I said you need to give it to us, otherwise, you know, then we'll have to go through the legal, legal, you know, like a channel, because this is ridiculous. You know we need it. And then they said, okay, you're entitled to a second opinion, but the second opinion is with in the system, which is the same, there's nothing different, just different hospital. But it's the same kind of facility, same kind of procedures, there's not much difference. I said I don't want a second opinion locally, I want a second opinion elsewhere, they told us. They said everybody always wants something else and you know, they always think, you know, like we are the best. You know there's nothing better outside. That's what they told us. Don't waste your money. They just want to cheat your money. You go to germany and then you know they were happy to take your money, but they're not going to do anything for you.
Speaker 1:So that's what that's like telling us is that that, like you know, I mean to me. I struggle with that a lot because I hear that a lot in what I do and I don't understand this I don't have a better way of putting it this idea of playing God right, like we're the best, we have all the answers and there's nowhere else to go. I don't know how any one person can believe that to be true and tell families or patients this. So that's interesting. You know that you guys experienced that as well.
Speaker 5:Because the doctor the first one, she was a pediatric oncologist. So then I asked her. I said you know, are you a neuro-oncologist? And she said no, I'm an oncologist. So it's like in general. I said, you know, I know, are you a neuro-oncologist? And she said no, I'm an oncologist, so it's like in general. I said you know, I want to speak to a neuro-oncologist. She said, but I take care of the neuro part. But I was like no, I need to speak to the neuro-oncologist. And then she was like you know, that's what I'm doing right now.
Speaker 1:So like it's just standard conversation, you're not going anywhere did you ask her how many children brain tumors that she had taken care of, just like phylo? Asked the surgeon maybe phylo needed to ask, I'm just kidding, yeah, yeah, it would have been a help she just gave me the the leaflets for chemosolomide.
Speaker 5:She was like you're ready, that's what I'm going to give it to her. I said I'll give it to him. I said and how do you know it's going to work? She was like we don't know. And then she was like this is what we give to all the children.
Speaker 3:They said it's the standard of care they kept repeating it it's the gold standard.
Speaker 1:It's very well tolerated and the life expectancy of brain tumors with temozolomide is. I think it's like 12 to 15 or something like that.
Speaker 3:Do you guys know, prognosis wasn't good, and the thing they kept repeating was that well, it's the gold standard, it's well-tolerated. And we asked, well, okay, but like, how effective is it? And they're like, well, you know, not so much. And I think that was, you know, the start of when, I think, some of the alarm bells started going off for us, because you know, we traveled over an hour to get to this other specialist hospital, it was like two hours. And then when we got there to meet with the doctors and we, we, we hope that it would kind of like just illuminate things because up until this point they hadn't actually given us anything in writing that actually said what the diagnosis was.
Speaker 3:And you know we had. I mean, we were reaching out to literally anyone that we knew, anyone with any vague connection to the medical community. You know a friend who knows somebody who's a doctor, and just we were asking everybody we could, and of course the natural question comes back well, like what's the what's the diagnosis? And all we had was kind of a vague high grade glioma, but they're like, but where is it located? And we didn't even, we weren't even able to say in like medical terms what it was. So you know we asked the team and they didn't give it to us, which was very frustrating, and you know we went there. We're like, okay, can we actually like see the MRI scan and understand what's going on? And then we realized that she didn't even have access to it scan and understand what's going on.
Speaker 5:And then we realized that she didn't even have access to it. So she showed the mri scan of um.
Speaker 3:She showed the mri scan of the before final surgery yeah, so so by this point it was already you already have many, many mris after each surgery and then they don't have any of those.
Speaker 5:They have this, the scan, oh, before the surgery. And then the radio radiologist. He came over. He said, okay, we'll give him the classic radiotherapy. I was like, why not a home talk? He was like he doesn't deserve it.
Speaker 1:Not cost effective.
Speaker 5:That's what he said Because yeah, that's what I said he doesn't deserve it because it's not cost effective. I said I'm going to appeal that. He was like yes, you can, but I'm on the board, so you know you're going to get 100% not as else, you're going to do it.
Speaker 3:Yeah, I mean it was very frustrating because they gave us pamphlets at every step of the way, and they gave us one saying hey, here's proton therapy, which is, you know, better for children, you know, less damaging everything else. And you know, when we asked for it, we were basically laughed out of the room. And you know all the questions that we had. Like none of them were taken seriously. I mean, even to get the diagnosis, we had to send an email to the team saying this is what we're going to tell another medical team is the diagnosis. If it's incorrect, please let us know, like by the end of the day. And finally they wrote back to us saying, yeah, that's right and it's incorrect, please let us know, like by the end of the day. And finally they wrote back to us saying, yeah, that's right. And that's how we ended up getting the diagnosis.
Speaker 3:And I think that was for us, I think, probably one of the turning points where we realized that to kind of move things forward and feel comfortable with the care that he'd be receiving, we needed to kind of challenge the status quo of what we were saying, which was obviously really uncomfortable because neither Weiwei and I are doctors, so you know all the medical terminology, everything else.
Speaker 3:You know we were asking questions and you know going back and trying to do as much research as we could, but, you know, not having the background and this being completely new to both of us, you know it was hard and it was kind of intimidating as well. You know there were moments where we had a room full of six doctors telling us that what we were doing is wrong, and then we would ask them questions which we had heard from other people that we started to reach out to and started to realize like hey, what about this or what about that? And then we kind of saw that they didn't have answers to what we thought were kind of basic questions. And then that's what kind of got us on guard a little bit to really just start seeking answers elsewhere.
Speaker 1:Yeah, did you guys have friends that you were close to that at this point, that that didn't know like physicians or anybody close to you?
Speaker 5:This point, not at the final salon for's mom. She's an oncologist. She was doing research in Roy Marston, so that was it when she reached out after I spoke to you guys, you know, like in Germany. So, and then, because before there's no pathology results, all we ask them, when we ask for second opinion, what they give it to us is, you know, like a wild type, and then glial, hybrid, glial ma, grade four, wild type, that's all they give it to us. There's no paper, it's literally just typing. Like I type it to them, I say, is this the diagnosis? They say that yes, this is it, and then that's all. There's no proper paper or anything. So then we request to transfer to another hospital which is closer to his school, supposed to offer the best in the UK, and then pretty much in Europe. And then the doctor there, equally as the same as the one before, it was like literally they don't want to give us anything. And then finally we receive the pathology result.
Speaker 5:That's when there's more questions are coming. The first one is they gave the grade four, but it's everything. It's like you read the fine writing that says you know, the main tissue is in a process, so we cannot really test it and there's only a few things. And then, like we test it and then we give it with four, and then the proliferation index was one to two, which is really really low. And then which that's a lot of alarm was like because I really researched a lot on this proliferation index why this doesn't make any sense to me. And then there was like a you know, there's no cells dividing it's, there's no like a mitosis and there's nothing. So they don't know, you know. And then I was like then why you gave it four? They said it because it's dead, dead tissue. I was like, okay, and then the second one, that's when they find the fusion. They said the fusion, but they never encountered with this fusion before. So they said you know, it's probably contaminated, please do not use it Like the ROS1, that's what they said.
Speaker 3:They said the sample is probably contaminated. So while it was showing up they said ignore that because it's probably a mistake.
Speaker 1:The ROS1.
Speaker 3:while it was showing up, they said ignore that because it's probably a mistake. Ross one. So it was a ross one mutation, right, which is a. I like to explain to our audience. Yeah, because the challenge was he. So he had three surgeries. At each surgery they took a sample and they tested those samples and the first one was kind of like it's the worst quality sample because there was a lot of necrosis.
Speaker 3:The second, second one was kind of the same. And then the third one was kind of the best sample in terms of like they had the most viable tissue that they were able to test and get information from. And it was that last sample where, you know, it's only when we requested the reports through the hospital that we saw that actually the grade had changed from you know, grade four to not elsewhere classified. And we kind of asked the question we're like, well, like NEC, what does that actually mean? And you know, when we did our research we said like, okay, it means that they can't quite fit it into the category because it doesn't meet all the criteria. And we're like, okay, well, does that mean that it may not be high grade or that it might not be grade four?
Speaker 3:And when I brought this up to the oncologist who was looking after him, I was kind of floored by her answer because she said, well, we did three tests. Two out of three said it's high grade, so that's what it is. And I'm like, yeah, but the first two samples, you acknowledge, were like really bad quality samples where you couldn't really test it. And then the last one was supposed to be the best one, and that's the one which says this might be something different. And so that was kind of scary, because that's when we kind of got the really concern that, like you know, are they actually going through things properly and spending the time on it. And that's when, you know, we were starting to speak to other people as well. So we had gotten some pointed questions from others in the medical community who said you know, well, you know, if I were in your shoes, I would look at this or I would ask about this.
Speaker 5:And then you know, did you result online?
Speaker 1:No, did you go online?
Speaker 5:Like, wait, were you communicating with people online that had similar diagnoses or what were you doing symptoms? You know what they're doing. So everybody's talking about different things and what kind of things they tried and you know what kind of and I try to focus on the positive part what worked for people instead of you know not worked. And then that's as soon as I got those results those not even the third one, the first two I sent it to your ex-colleague and then that's where she found out to the rose fusion. And then, because I didn't even pay attention, because I didn't even know what that means, so she mentioned, she said you really that was the previous nonprofit that I worked for before Cancer Help Desk, and so how did you find that nonprofit?
Speaker 5:I think I go through this Mosella Foundation.
Speaker 1:The Mosella Foundation.
Speaker 5:Because they give you the new diagnosis, what you need to do, all those kind of information. And then there's anybody I just send an email and whoever responds, I respond to them. Information. And then there's, like any, anybody I just send an email. Now, whoever respond, I respond to them.
Speaker 5:Yeah so this one and and then that's why she mentioned to me. She said, if this mutation is really positive, positive and then there is a very effective drug. You know like you really need to test that. So that's when I went back to the doctors. The doctors was um, you know they? They told me it's probably just a false positive, they're not going to test it because there's no point. Then the new hospital when we talked to the radiologist, we asked her the same thing. She was shouting at me. She was like how many times do I have to tell you they don't last. So there's no point. That's what she said.
Speaker 3:Yeah, like we really kind of, and every time, whenever we're asking for things like, hey, like we've been told that if this thing which showed up on the report, this potential mutation, could be really important because there's an FDA-approved drug which targets that specifically, which is shown to be effective Right, an FDA approved drug which targets that specifically, which is shown to be effective, can we get validation whether he actually has this or not?
Speaker 3:And we were denied multiple times in terms of doing more testing and the kind of general attitude to kind of what Wei was saying before is just that, like we have all the information we need, like we don't need anything else. And even when we had started reaching out to you know doctors in you know the U? S and elsewhere, um, one of the things that we noticed right away was that, like number one, they just had a very big attitude towards collaboration and working with other people. They said, hey, whatever the team you're working with, like let us know we're happy to partner with them and work and share information. Um, and when we kind of went back to, uh, to our team in the UK and kind of told them that we're like, hey, we've spoken to these people who kind of know about this thing and they're willing to partner. We were told no, it's okay, we have everything we need, it's under control, so it's like so there was just like, like, where does that come from?
Speaker 1:Is that you know when? When I bring this story up or just talk about other people that I meet along the way, whether they're UK, india, whatever, um, you know, people go. Well, that's socialized medicine for you, right? And I'm like I don't know, I don't, I don't know if it's that or not, because we have, obviously, hospital systems in here that only, you know, in the U S that only follows certain protocols and they're not going to do anything outside those protocols.
Speaker 1:So, you know, what is that? I mean, is it just that the odds you know I hate saying odds, but the odds aren't great here in this particular situation and so therefore, they're not going to do anything? Or is it, you know, is it a product of the system? Is it like, what is it that, if they're not willing to collaborate or know what else is out there? I mean, at this point in time, you know, because of the nonprofit that we had, we also had experienced, one year prior, another child with the exact same DNA gene fusion, which I'm wearing his shirt today by the way, this is a little Reese's shirt with his handprint on the back and I proudly wear it. But he, you know, we, we, we have this information, and so how do they not accept that Like that's? That's very strange to me.
Speaker 3:It's a it's a really good question. I mean, I've spent a lot of time thinking about it and you know I talked to I talked to some nurses who had previously worked in the UK and actually were in the U? S and we asked them about their experience and one of the things that they said was that kind of the attitude in the medical community there is very hierarchical, so the doctor knows what's best, and even if you're a nurse and you have a comment of a question, it's kind of like. I think she told us an example of one case where she was trying to give the doctor some information about a patient who she'd been spending a lot of time with and the doctor responded to her something to the effect of if I want your opinion, I'll ask for it, and that was quite jarring.
Speaker 3:But I think that the idea of the kind of the setup of the medical system is a component of that, because that is something that we kind of ran into several times in the sense that like, oh, we've already run the test right.
Speaker 3:So it kind of made it seem like, well, we've ticked that box and there's, I think, um an unwillingness to try and go outside the bounds of what's already um approved or known, and there's not really much um.
Speaker 3:I don't want to say risk taking, but I just it's more of just like trying to do more right. And I think that, you know, compared to the UK, what we saw in the US was that, whether it's because of the setup of the system or otherwise, they're always kind of incentivized to do more right. It's like if you need to run another test, it's like let's keep testing until we have the answer that we're looking for, rather than well, I already spent money testing at once, so I don't really want to spend it again. And you know, that's kind of a theme that came up with us as well. When you know, in the mix of other things that they were saying about, why they didn't want to go forward with, you know, proton testing or proton therapy or something else, it was kind of like well, you know, it's not cost effective. It's like you or something else. It was kind of like well you know it's not cost effective.
Speaker 3:It's like you know when it's your child like that's, that's the least of your concerns, right? Like I don't. I don't care how cost effective it is, like just do do whatever you can.
Speaker 1:This is another one that that really drives me crazy, and I hear this a lot in the U S. Well, your insurance doesn't cover it, so therefore, right, well, did anybody ask if you were willing to pay for it out of your pocket? I mean, was that an option? Is that an option there that you could say, well, we're going to pay for whatever is required for our child and I want it, so therefore we're going to pay for it? I mean, they won't even have that conversation, right?
Speaker 3:No, I mean, that was part of the thing as well. There was another couple that we had heard about in Australia who had a different circumstance, but their health system is similar to the UK and I think that they wanted to go for this therapy which their health system didn't approve or wasn't willing to pay for. And then they went and did it themselves and paid for it themselves. The therapy was successful and afterwards they kind of went back and I think they brought a lawsuit against the thing to kind of show that like hey, we were trying to go for this, and I think they ended up being reimbursed for that. But it's just kind of one example.
Speaker 3:I think that there is a big risk aversion to do anything other than the standard of care which you know. It's frustrating for us because they were very clear in terms of saying that the standard of care, which is radiotherapy, chemotherapy together, wasn't that effective. But that was. It was kind of like the you know, when the only tool you have is a hammer, everything looks like a nail. It was kind of that sense, right, like it was the only course of treatment that they had. And when we asked them, like well, what happens if that doesn't work, it's like, oh well, then we'll do it again. And then I think it's like in the UK, you have to do it something like three times before other therapies would become available.
Speaker 5:The thing that really bothered me it doesn't matter If it's a brain tumor, that's what they give it to you. If it's a golioma, that's what they give it to you. So that's why when Fido was before his radiotherapy because he wanted to get the chemo together. So we had a call with the doctor to go through the procedure and then she only had our first two pathology results. And then I asked her. I said oh, the T-mosotomai is going to be effective. She said, oh, that depends on if he's methylated or not. I need to see his report. I said you haven't seen his report. That was from the first report. He's not methylated.
Speaker 5:She was like, oh, that is not going to work. That's what she said. She didn't even look into the report. And then she was having the. I had an appointment with us and I said do you know? And then his grade changed and then for the last, the third report, she was like, oh, I didn't. I said you don't have that report. She said no. I said do you want me to email to you? She said yes, please. Oh, wow. I was like yeah, are you serious? Like I need to email you the report that is from the hospital and you're the doctor who's taking care of my son, like we're transferring to his care to you, and then this is how you treat us yeah, that was like a common theme, just like that.
Speaker 3:The lack of communication between the team, which we came to realize after seeing the contrast to them when we came to the US, was just how well the communication flowed between all different members of the team.
Speaker 3:So, like you know, as a result of the pressure from the initial tumor, it's impacted Philo's vision.
Speaker 3:So, you know, as a result of the pressure from the initial tumor, it's impacted Philo's vision.
Speaker 3:So you know he sees a neuro-ophthalmologist, among other things. And one of the things that you know kind of stood out for us when we first came was that, you know, even the ophthalmologist was completely up to date with all of the things we've discussed with our oncologist, to the point where we were like wow, like we didn't expect you to kind of know and reference all that stuff, but it just showed that they were all talking, they were all on the same page, Um, and they were all just very well coordinated. And that's something which you know, we realized afterwards has such a big impact in terms of the overall quality of care, because if every person that you're seeing for a specialty is kind of like a disjointed conversation, you kind of miss the ability to see the bigger picture. You're just looking at endocrinology versus vision versus something else. It's kind of like you're speaking to all these different people and you've got to kind of start from scratch to explain what the situation is, and even then you get the sense that it probably isn't fully understood.
Speaker 4:So how did that transition happen from care in the UK to care in the US?
Speaker 5:So I think it's right. You know like, I think I was thinking of, you know like, the treatment in the US when Fido was still in the hospital. So then I was thinking either Germany or US, because Fido's sample was sent into Germany for sequencing Because the UK refused to do it and then they didn't want to give us the block.
Speaker 1:Yeah, how did you?
Speaker 5:do that Because.
Speaker 1:I think that's interesting too, because people wouldn't think I'm going to send it somewhere else, you know, and this is something that people don't really understand to do. So how did you decide, like I'm gonna get the, the tumor tissue, to be tested? The block we call the block, it's a tumor block.
Speaker 5:um, yeah, no, I was saying to germany I mean that's, that's a pretty big step you took because, uh, I was, I had a call with germany you know like to talk about, uh, uh, you know, like you, what's the difference if I send it to them so, and then there's two labs, so the one I use is CIGET, and then you know, they also work with Herrenberg, so which is which everything is based on. So they have a big, you know, archive for the brain tumors and then they were they were telling us what they use, you know the technology use. They dig deeper and wider, and then they did a lot for UK. So they gave me the feedback. So for the UK patient it's quite, you know, it's always a struggle to get a tumor sample there, and then they always delay, and then they found a lot of mistakes that the actress missed and then they also got. They also work with Duke, quite a lot, you know.
Speaker 1:So they have patients from Duke to go there From Duke University, right From Duke University in the US.
Speaker 5:Yeah, yeah, so basically, you know I had a lot of conversation and then I asked the by many questions they are so patient. They explained to us. And then the genetic, the by many questions they are so patient, they explained to us. And then then the, the geneticist of the lab, and then she had a conversation with us and and you know she was telling us how those genes function and she also really focused on the, the most one. She said we really need to test that because that is, if it's a drive, you know, and then you have a solution.
Speaker 1:Yeah.
Speaker 5:So that's why you, why, like we said, okay, we're going to go ahead and we're going to pay for ourselves. Yeah, just out of curiosity when you paid for that yourselves. What was the cost to you? I think it was about 10 or 11,000 euros.
Speaker 3:Yeah, so it wasn't a cheap test. It was about 10,000 euros or 11,000 euros.
Speaker 5:Yeah, something like that.
Speaker 1:And I think part of the challenge leading up to this as well was that Just for our US listeners, what's that conversion?
Speaker 3:Maybe like 12 or $13,000, I guess, right, something around there, right? I think leading up to that part of the challenge was we were given a prognosis which was right, you know, very bad, and so we felt like we were under a time crunch which, strangely, wasn't really reflected in the urgency of the team that we were working with in the UK. I think from our lead oncologist to from our first meeting to the second meeting, it was like 120 days, which just anyway, yeah.
Speaker 1:And just also for our audience. I just want to mention that that type of testing here in the US is more affordable, and so there's ways of getting that testing, but when and I think what we talked about when life is in your hands and you've got to craft survival, literally, that you do what you've got to do.
Speaker 4:So you take the information from that report, from that pathology, and you share it with other doctors, other teams? Has that been the US?
Speaker 3:We did yeah, so you had a ROS1, though.
Speaker 1:They found ROS1 also right.
Speaker 3:They found ROS1 also right, so they were able to confirm it and our team in the US got in contact with them directly and they had their own team evaluate the raw data as well, so that they could feel confident about it, but I think that, leading up to this, one of the reasons we chose that lab in Germany was because they also have a connection with another organization which does kind of like targeted immunotherapies.
Speaker 3:And I think, you know, given the prognosis that we had and not really knowing what our options were, we were kind of in a position where we were trying to pursue multiple different options at the same time, not knowing which one we would ultimately need to go for, because we didn't know what the data would say. But we knew that we couldn't really lose time on any of those options. So we kind of had to pursue multiple options at the same time, right up to the point where we're kind of like, you know booking appointments and you know kind of making plans contingent upon us getting information, but we didn't really know what we're doing. So it was kind of a difficult period because it's not like the answer wasn't clear. You know, we spoke to lots of different people. We had lots of conflicting advice in terms of what it could be, what it might not be, which also has an impact on what potential therapies could work.
Speaker 5:So. But we knew that getting kind of better and clearer data in terms of what we're actually dealing with was going to be key to whatever stuff we were going to take next. And that's kind of what led us down that path. And also you know the timing, because we know when Fido's story, when she was three, they found the brain tumor. She was like an ET, something I forgot the name In burial, something is also like a really bad one, a 3-4.
Speaker 5:So same team treated her back home and treated Fido so it's the same team. And then they told the father there's the only option we can we can do is to radiate her whole brain and spine and there's nothing else we can do for her. And then six months and she's 100, there's no chance. Six months that's what they give it to the parents. So the parents went home. They don't want to radiate her whole head and spine when she was three. And then so they decided within two weeks. So then they went to Sloan Kettering, so they just moved the whole house to New York because they had twin girls. And then, you know, after like a year and a half treatment in US and then finally they went back home and then the girl she's uh, she's turning 11 right. Wow, she's fine so um fully functioning.
Speaker 5:She called. He called me right away and he was crying on the on the phone he was like it's just a nightmare all over again, like he. He knows what they told him and then you know exactly what they told me. So so he said you know there is a hope, so you know like a.
Speaker 5:And then you know exactly what they told me. So he said you know there is hope, so you know like. And then he also put me in contact with his old contact. He said you know, in the interest it's always. He said, just don't wait for them, you just have to go ahead and do your own thing. And then you know, reach out to us as much as you can, you know.
Speaker 3:So that's why we are, you know, we're trying to reach pretty much everyone. Yeah, that was a big turning point for us because this was somebody who, again, we had no idea previously. But it was a very similar situation where, again, I think most people, I mean I certainly fall into this bucket. If a doctor tells you something, you kind of just accept it because you think, well, obviously they know what they're doing, and most of them do, but that doesn't mean that they can't get it wrong sometimes or that maybe they're working up wrong. And that was kind of a big realization for us.
Speaker 3:But, you know, hearing this positive success story for us was a major turning point because that kind of gave us the confidence, just the, the energy and the drive to be able to keep pushing on in the face of all these challenges, knowing that other people have been told the same thing and then they got through it. And that was a huge, just motivator for us to be able to see that that hope is possible and that it was possible for us as well. And that's one of the reasons why we've tried to, you know, share a little bit about our story, to let other people know that you know, even if you're in that situation and it feels hopeless and you know the information is scary and it doesn't look good, um, that doesn't mean that there's nothing you can do and that doesn't mean that you know there's um there's nothing else that can be done, because we've seen that there is so now we're about uh what?
Speaker 4:12 or 16 weeks post surgery and you're starting to get all the information and you've shared it with the US and it was after the surgery there was what was the treatment after the surgery?
Speaker 3:There was. It was what they call standard of care.
Speaker 4:So in the.
Speaker 3:UK. In the UK was radiotherapy combined with chemotherapy.
Speaker 4:So, he did undergo radiotherapy. Oh no, no, no, he didn't.
Speaker 3:He did. Yes, we were told that that was basically the only option and that was frustrating for us as well, because at that point we still didn't have the clarity on the diagnosis. You know, the genetic testing that we had commissioned took time to complete and you know, everything was presented with such an urgency behind it that we were told like hey, if you don't do this then, like you're basically missing your only chance. So, you know, reluctantly, we went forward with it, but you know we had went forward with it, but, um, you know we had our doubts throughout the way as well.
Speaker 5:Um, it's like, you know, we, we don't know what's going to be. You know it might work, it might not. So you're like thinking, and then that's when the time we reach out to the other doctors. You know we reached out to another surgeon from Australia and then he also said, and you know, when I talked to him about the, the, the prophylication index, and then you know he said you know, it's just, it just doesn't make any sense. And he did like over 10,000 surgeries for kids.
Speaker 5:And then you know, like grow, um, grow ups, and then he was saying he, sometimes he said you know, when it's that big, and you know, I always question because sometimes you know, like, like you know, they will cause problem long like way before before they even notice. So for him he think it's slow growing, and then that's, you know which is. You know very. Also, you know very fresh point. You know like a, like a point of view. So I was thinking because I had a doubt and he said, you know, because if that thing is really, really aggressive, you know it's not going, it's going, you know, you're going to see like really dramatic change and I think in a very short period of time, if you missed it for so long. You know like, and then that can be that, that big size. And then he said you know like, there, like I, you know, I will ask for more and all the necrotic, all the necrosis too, is a good indicator of that.
Speaker 1:Um, with all the dead tissue, essentially, and and um, I know Matt's tumor had necrosis, um, but probably was there for a while before he finally had a symptom because the tumor was out, growing its blood supply, but probably over a period of time once he finally had like the pain that he had.
Speaker 4:But, um, yeah, so did Philo ever receive treatment in the U.
Speaker 1:That's where he's now right.
Speaker 4:So you make it to the so did you stop the radiotherapy and the chemo in the UK?
Speaker 3:So yes, so we finished. So his course basically finished at kind of the beginning of December, although as we were nearing that, December 8th. December 8th.
Speaker 2:I remember better than the doctors.
Speaker 3:As we were going through the process, though, we were already kind of in a position where we had received enough conflicting information we had saw a number of red flags kind of throughout the process that we were already kind of determined that we needed to do something else, because if the only option was just to basically repeat that standard of care over and over again, we knew that it wasn't going to end well.
Speaker 3:So at that point we had already kind of spoken to some teams in the US and we had found a team which, again, having confirmed the genetic results and we knew that there was a therapy that was available, we brought this up to our team in the UK and even knowing that their still next course of action was like oh well, let's go into surgery again, which didn't really make sense for us because the whole idea was that if you have this really targeted drug that can target exactly what you have, why not try that first before going into a surgery again?
Speaker 3:So we kind of made up our mind to come over to the US, which I think in terms of the whole, from like beginning of really thinking about it to making the decision and putting into action, it was probably about two or three weeks. Yeah, and you know we've been in the UK for, you know, for 15 years. So we, you know, had to pack up our house and then, you know, change schools and just do everything. It was a lot of logistics to kind of make that happen, but it was also probably one of the easiest decisions we had made as well, because, you know, in that kind of situation everything else just becomes a detail and you're just looking like what you're trying to accomplish, which is, um, to just have the best chance possible, um, and that's that's kind of what led us here. So I mean, we would have, we would have gone anywhere.
Speaker 1:I have a question for you, wei um, since you uh described finding the scientists in the nonprofit. You know I try to help people understand why you know one, why we have this nonprofit and why we have oncology nurses and PhD scientists. I think that people don't understand, like why would you have a PhD scientist involved? And we talked, we talked about this ROS1 gene alteration. Matt actually has two, had two genomic alterations called BRAF and MEK M-E-K that he got targeted therapies for as well. And so we say, as a nonprofit, you know the work that we do that a PhD really helps people understand the science, the biology of, like, how these drugs work and the biology of what's going on with the cancer. So, just from your experience, I would love for you to maybe quickly share, um, you know, like, how that became important for you in this decision process because I think when I was talking to them, like you know, they made a very.
Speaker 5:Then they made everything sounds really simple, like for me to understand, because all those terms, I don't understand what those things do.
Speaker 5:So when I ask them all those specific questions, they can always answer me, said okay, and you know this is what it means, so the possibility. And then they gave me the research paper to back back it up for what you're saying. And also, you know they're always on top of you know what's new. You know, like, what's the new technology, what's a new drug coming? You know I they're always on top of you know what's new. You know, like, what's the new technology, what's a new drug coming, you know like. And then they always attend to those symposiums, like or the events, for you know like, for whatever their study, like for the gluten tumors, or for you know, like the gene alteration, so they're very on top of it, and then so they're very updated. They're very on top of it and then so they're very updated. So when they share information and then sometimes they will share with me, like I said, oh, there's something coming up, maybe you should look at that.
Speaker 5:You know you should look at that and then, or this doctor is, you know, is going to have this, you know trial is coming up. Maybe you know it's worth it to have a conversation with them. So they're're, you know, like they're preparing you very, yeah, very informative.
Speaker 3:and also, you know they can translate something you know very scientific and like a like a form, like a foreign language, to the language you understand, and then you can really understand this is what you need to do, and then you can make up your plan, say, okay, this, okay, that's what I need to do for the next step, yeah so I think it's a very important for you know, for the real scientists you know, and to get involved, because the researchers said you know, like that's what they do, that's what you're good at yeah, I think that translating it into language that we could understand was really important when we were still dealing with our existing team, to be able to relay those questions in a way that we actually knew what we were asking.
Speaker 3:It's not like we're just, you know, reciting something that we don't understand what it means, but, like you know, even though we're obviously not at the same level as them, they explain it in such a way that's easy to understand so that you know we can ask those questions in turn, and that definitely helped us realize, you know, that you know whether our existing team would be able to kind of go through and do the things that we thought we needed to do, or whether we needed to make a change.
Speaker 1:Yeah, yeah, so, as I tell the coaching is is, I think, invaluable. And the guidance and that's also what we talk a lot about is how do you form an action plan if you don't know what to ask for or how to talk to doctors that may not even have the same information? I've personally also been through that process with my uncle, where the doctor actually basically slammed the door in my face and told me to get out of her office that I didn't know what I was talking about because I actually had more education and understanding about those genomic alterations at that point in time than she did. So I've been there also through that journey and understand what can happen when you maybe potentially offend the care team. So that's amazing and I know that you're also now at UCSF. Philo not too long ago had a birthday right uh a little while, a little while back.
Speaker 3:Yeah, um, he actually had uh another surgery just around thanksgiving as well, which was mostly because there was, um, I think, like some, some scar tissue from the previous surgeries that were causing a bit of uh blockage, but um, that went off without a hitch. Um, he was back in school and a week and a half later, which was pretty incredible yeah, I saw he was on the monkey bars too. Huh, philo you were playing on the monkey bars.
Speaker 3:Yeah, from from from eight, eight days, from from having surgery to to being back in school, which was, which was pretty incredible, but Is he still?
Speaker 4:under care. Sorry, is he still under care? He is Taking medication, yeah.
Speaker 3:The targeted yeah. So when we came kind of last year, we started on a targeted therapy.
Speaker 4:What's it?
Speaker 3:called yeah, it's called Roslitrex or Intrectinib and that targets the Ros1 fusion. I think it was originally designed for lung cancer, but they've also seen that it has a beneficial effect on brain tumors as well. And you know from, I think, our first MRI check after being on the medicine for I think, like three months, we saw that actually there because he still had some residual tumor which wasn't able to be resected by surgery and out of that that was there before, we saw that it had shrunk about 50%, which was a huge moment for us to be able to see that everything that we had kind of gone through, all of the kind of obstacles to get here, was for the right reason.
Speaker 3:And that was hugely validating for us to see, and you know, in terms of, you know, impact to him, I mean, we haven't really seen any side effects. He just takes a couple of pills a day and that's pretty much it, and then everything else is pretty much normal. We check him out on lots of other tests as well, but that was huge for us to see that, you know, this targeted therapy was working, which is yeah, it's amazing.
Speaker 1:I think we're gonna see what we are seeing it, where you're treating yeah, you're treating the alterations. We're using immunotherapy to boost the immune system. You know that this is really. I feel like we have to strongly encourage people to start asking right, start asking for what else? Is out there for DNA testing. You know more than 60% of patients still aren't currently being properly tested. You know that you've got to ask, and so this is a really powerful podcast and you know time with you guys to just hear your journey.
Speaker 4:I've got to give it to Wei and Jeremy. Your research and dedication to crafting survival is amazing.
Speaker 1:Yeah, that's quite the journey, especially to pick up your whole family and move across just to make sure that everything works. And I also hear that you have a really, really amazing healthy diet. You have a smoothie every day.
Speaker 4:Like a hundred ingredients in it.
Speaker 1:Do you know what's in it?
Speaker 2:yeah, and I have this, this drink called a brain shot, which is lemon lime with cilantro and asparagus, and apple.
Speaker 1:Wow yeah, we're going to have to try that at home. We just got a juicer. I'm going to have to try this brain shock. We'll call it the phylo brain shock.
Speaker 3:We did a lot of, I mean, diet. Diet was a big part of it for us as well, even when he was in the hospital. Um, we would go home every day and like, actually make him a really healthy meal and bring it to him every day. Um, as which?
Speaker 2:normally she would like be like she would bring two meals and then like one for dinner, one for lunch yes like I would tell her what to make and then she would make it the next day and she would make a dinner and lunch and I got to choose which one to eat for lunch, which one to eat for dinner and we will bring you the smoothies.
Speaker 3:Yeah, yeah, yeah yeah, I think, like with the food, I think you know, while we were still in the hospital and we were looking at all the other options, uh, like you're saying before, where we didn't know what the next course was, uh, we saw a lot of stuff around diet and it was kind of a little bit hard to to make out whether, like that was impactful or not. When we asked our team um in the uk, they it's also said like it's too much effort and it doesn't really make a difference.
Speaker 1:So, um, they said, if he wants to eat a big mac and a coke.
Speaker 3:Give him a big mac and a coke, um, and no, you know not the answer. We had previously known somebody who had also received a very tough diagnosis and had completely changed their diet without really doing anything else.
Speaker 5:He only changed his diet. He had his grape picked up and everything, because they told him like six months, so he had everything prepared, his well, everything prepared, and then he just changed his diet. I remember I went to there, I went to his uh to visit him and I just remember I was always hungry because he had just a fruit for lunch and at dinner he just had like a salad and then a very tiny, like a sometimes pasta and like a very small portion, and then all the sauce, everything he made from scratch and then he'd grow his own vegetables.
Speaker 3:It's like you know, it was like a 20 years after the doctor said, you know, like six months, that he was like, yeah, I'm fine and I feel okay and there's nothing going on, nothing wrong with me yeah, so I think, like the experience of just knowing him, um, and just some other things, it was one of those things where you know when, with the prognosis that we were given and the options that were on the table, we kind of took the mindset that anything that we can do to help is worth trying, even if it's a 2% or, you know, a 3% increase in value of everything Zero point, zero, zero, zero, zero, zero, zero, zero, zero, one percent.
Speaker 2:Yeah, we'll try it 0.00000001%.
Speaker 3:Yeah, we'll try it. We will try it. So we were literally open to trying everything, and so we did the diet changes as well, which was a little bit tough in the beginning. You know, trying to get an eight-year-old to drink celery juice is not the easiest thing.
Speaker 2:At first it was very hard. Yeah, at first it was very hard.
Speaker 1:Yeah, but you're strong.
Speaker 2:I used to take half of a jar, but in the hospital when I had it, my mom would encourage me to. If I had the whole thing, I would get a game or something.
Speaker 1:I heard she was, she was bribing you with money.
Speaker 5:Every day. You have to charge us.
Speaker 3:no, we have to pay you for your drink, oh right, we might have resorted to bribery in this case, but I mean throughout his whole course of treatment in terms of radio and chemotherapy. The team that we're doing was actually quite surprised at how well he was doing so. Initially they told us he would feel so sick that he wouldn't be able to go to school. He'd probably just be staying in bed all day, and he he kind of showed exactly the opposite. We would do our you know radiotherapy and chemotherapy in the morning, and then he would go to school and he would spend the day and yeah, he was feeling his body.
Speaker 1:He was yeah he was probably at 80 or 90 percent. The nutrition is yeah, nutrition is critical. I don't care what anybody says. I think it is true. You are what you eat, and having anti-inflammatory, nutrient-dense food is vital to whether you're sick or not or to prevent illness. But especially when you are ill and I do see a lot of people eating whatever they want, unfortunately I do see a lot on the social media channels and seeing parents feed their kids lots of sugar as their bribery, as an example, and it's very heartbreaking because, yeah, so how about organic?
Speaker 4:Is organic vegetables and fruits important or not?
Speaker 3:so much, I think whenever possible we try to go with the organic stuff and then one of the other things that we're looking at, so in the smoothie, takes in the morning. Uh, I mean we would be able to tell you all the the things in it, but you know there's also like like lion's mane, mushrooms and um, yeah, I thought, maybe we should maybe, maybe we should get your recipe way and share that with people thank you, guys, for joining us today thank you, so awesome thanks for sharing
Speaker 1:thanks for sharing your story. You're welcome and your courageous your courageous uh journey uh is is no small task, is probably one of the most difficult, I would think, that anybody has to face, and so I'm sure there are so many people out there dealing with something similar, and so if there was one thing, a way that you would like to share with other people whether it be about hope or about seeking, you know, answers, whatever that is- Any key takeaway.
Speaker 1:Yeah, any key takeaways. What would you want to share with other people, maybe dealing with something similar? You know answers, whatever that is Any key takeaway. Yeah, any key takeaways. What would you want to share with other people, maybe dealing with something similar?
Speaker 5:You know, trust your gut, just keep going and never give up. And then you know like, and of course like.
Speaker 4:Fighter mentality.
Speaker 5:And then the time is really important. So you know, get all your options as soon as you can Like, don't wait.
Speaker 1:Rely on other people to help you find those options if you don't know right if it's overwhelming, yeah yeah, well, thank you guys. Yeah, this was awesome. Jeremy, it was great to meet you. Uh, we look forward to meeting you guys in person. Uh, it looks like we will be holding an event for cancer help desk um in fremont area so not too far far from you in April, so I'll keep you posted on that.
Speaker 2:It's a bunch of high school volunteers yeah, we'll celebrate your cat's birthday.
Speaker 1:Yeah, it'll be a lot of fun. So thank you guys for for taking this time and for spending it with Matt and I and talking about how you crafted survival.
Speaker 3:I appreciate it. I think you know sometimes you don't know how something's going to work out. But I think to Wade's point, just don't give up, keep going, even if the path isn't clear in front of you. Just keep taking one step at a time. And I think, if I look back in hindsight, we realize that a lot of the steps that we identified as the right one were definitely not clear at the time and there was probably for everything that brought us a step forward. There was probably five things that took us a step backwards. But just keep going. You know, focus on what's important and that there's always hope.
Speaker 1:Yeah, fantastic. And now you've got a beautiful boy who's playing the piano, karate chopping, swimming, tennis, doing all those things. So keep going, Philo. You're amazing and we can't wait to see you in person.
Speaker 5:Thank you.
Speaker 4:Remember, no matter the challenge, there are extraordinary people out there overcoming the unimaginable.
Speaker 1:Their journeys remind us that grit and hope are powerful join us next time as we continue to explore the lives of those who face life's biggest challenges head on until then, stay strong, stay hopeful and keep crafting your own survival tune in weekly and follow us on instagram x tick tock and facebook.
Speaker 4:This is crafting survival.