In Episode 48, Quinn & Brian ask: Why the hell does childhood cancer exist, isn't the world effed up enough as it is, and what can we do to make it go away forever? Our guest is one of our favorite humans, Jay Scott, Co-Executive Director of the Alex’s Lemonade Stand Foundation. Jay runs the organization with his wife, Liz, in honor of their daughter Alex, who was diagnosed with cancer just two days before her first birthday. She set up a lemonade stand in their yard to help support her doctors and, before she died, she managed to raise more than $1 million. Since then, Alex’s Lemonade Stand has raised over $150 million and funded nearly 1,000 medical research grants for more than 135 institutions across the U.S. and Canada, and they’re not slowing down for a second. This is an awesome, inspiring, and necessary conversation, but be warned: our keyboards are covered in salty man tears and your phone may get wet as well. Want to send us feedback? Tweet us, email us, or leave us a voice message! Trump’s Book Club: Chicken Soup for the Soul by Jack Canfield: https://www.amazon.com/registry/wishlist/3R5XF4WMZE0TV/ref=cm_sw_r_cp_ep_ws_2Gr8Ab6RS5WF3 Links: Support ALSF: https://www.alexslemonade.org/donate Instagram: https://www.instagram.com/alexslemonade/ Facebook: https://www.facebook.com/alexslemonade Twitter: https://twitter.com/AlexsLemonade Host an event: https://www.alexslemonade.org/campaign/individuals-families?gclid=CjwKCAiAo8jgBRAVEiwAJUXKqBx6zZOMypRtjWtfenqvysIvRFhjTFzVPu6btuYC2ZYKXkB2oYZwohoCP90QAvD_BwE Connect with us: Subscribe to our newsletter at http://www.ImportantNotImportant.com! Intro/outro by Tim Blane: http://www.timblane.com Follow Quinn: http://www.twitter.com/quinnemmett Follow Brian: http://www.twitter.com/briancolbertken Like and share us on Facebook: http://www.facebook.com/ImportantNotImportant Check us on Instagram: http://www.instagram.com/ImportantNotImportant Follow us on Twitter: http://www.twitter.com/ImportantNotImp Pin us on Pinterest: http://www.pinterest.com/ImportantNotImportant Tumble us or whatever the hell you do on Tumblr: http://www.importantnotimportant.tumblr.com Important, Not Important is produced by Podcast Masters
Quinn: Welcome to Important, Not Important. My name is Quinn Emmett.
Brian: And I'm Brian Colbert Kennedy.
Quinn: Teddy's not here today.
Brian: Why is that?
Quinn: Mental health day, I think, he took.
Brian: All right.
Quinn: Just, you know, look, self-care.
Brian: It's fair.
Quinn: Self-care. On that note, today's question is why does the hell does kid's cancer exist and what do we do to make it go away froever? Feels like a good question.
Quinn: Yeah. Our guest and one of my favorite humans, whether he likes it or not, is Jay Scott. Jay is a Co-Executive Director of the Alex's Lemonade Stand Foundation, along with his wife Liz, who was unable to participate, but I also don't blame her.
Quinn: You know? In all seriousness, this was a pretty tremendous conversation and my keyboard is wet from salty man tears and that's that.
Brian: Yeah. Very cool conversation but, yeah, boy, can it be-
Quinn: Deep, inspiring as hell, rough.
Brian: Yep, it was rough.
Quinn: Necessary, but god man, wow.
Brian: Very inspirational though. So cool to ... Well, you know. You guys will hear it, you guys will hear it.
Quinn: Yeah, yeah. Again, hopefully one of those ones where you guys are really inspired to do the thing at the end of it.
Brian: And thank you, Quinn, for taking me to Alex's Lemonade Stand this year in Los Angeles. It was really, really fantastic, and I'm so glad that we went and now I want to be a part of it all the time.
Quinn: Yep. Yeah, quick note, we didn't really get into it too much. They have a variety of events around the country. For our Los Angeles listeners, every September there is the LA Loves Alex's Lemonade Stand Foundation, which involves about 100 of America's greatest chefs and mixologists and wine and things like that. They raise about $1.5 million in the afternoon towards kid's cancer research and travel. It is a fucking awesome time.
Quinn: So, we'll talk more about that as we get closer to it because we are supporters of it, formally and informally, not just in our drinking on the day.
Brian: No, right.
Quinn: Yeah. All right, let's go have a hell of a conversation with Jay.
Brian: Yep, sounds good.
Quinn: Our guest today is Jay Scott, and together, we're asking why does kid's cancer exist? Isn't the world fucked up enough as it is? And how do we make it go away forever and ever? My main man on the line is going to help us answer that question.
Quinn: Jay, welcome.
Jay Scott: Thank you. It's a pleasure being here and I look forward to speaking with you guys.
Brian: Yeah we're-
Quinn: You say that now.
Brian: We're very excited. All right Jay, let's just get started by just tell everybody who you are and what you do.
Jay Scott: Well, my name's Jay Scott and I am one of the Executive Directors of an organization called Alex's Lemonade Stand Foundation. We're a charity with a weird name, but we spend our lives figuring out ways to help kids with cancer. We are one of the largest childhood cancer charities in the world.
Quinn: And you are awesome. Full-disclosure, I am a proud supporter of your organization and hopefully will continue to be if you let me be after this conversation.
Quinn: Jay, you mentioned the weird name of your organization. Do you mind just spending a minute telling us why you have that name and where the organization came from?
Jay Scott: Sure. Well, Alex was my daughter. She was our second child and she was diagnosed with cancer when she was about one, just two days before her first birthday. She fought cancer her whole life, but when she was about four, she decided that she wanted to do something to help the doctors that were helping her, so she told us she wanted to set up a lemonade stand in our front yard. We thought it was a cute idea. We kind of teased her a little bit because we like to tease in our family that she was going to give them a check for $5 or $10.
Jay Scott: And her first day, she raised $2,000, then $12,000, then $18,000. And then she died when she was eight and a half, but before she died, she had raised over $1 million. If you fast-forward to today, what she started has become a pretty significant organization.
Quinn: That's tragic and incredible. And a always, our condolences on your lost. She seems like she was a wonderful human being.
Quinn: If you could do a very quick fast-forward, how much money have you guys raised since then?
Jay Scott: You know, it's interesting. When you're a smaller organization, you count the thousands of dollars, then it goes to the millions. We're probably around $200 million, but the last we've updated our website was $150 because I think $50 million is a good amount. We're approaching $200 million.
Quinn: That's pretty incredible.
Brian: That's insane!
Quinn: That's great.
Brian: How old is the organization?
Jay Scott: Let's see, about 12 years old. Coming up on 13 years old.
Quinn: Now, we don't usually dig too much into the past. We like to work on action steps and moving forward and setting up context for our listeners to take action and help out, but I wonder if you can talk us through a little bit of those moments after Alex passed away where you guys decided to continue the cause and to grow it into something more formal and what that experience has been like for the past 13 years.
Jay Scott: Yeah. When Alex died, we thought what she started would go away because she was the driving force behind it. She was the train engine that made the whole thing move and moved these people around the world to come out and help her raise money, but what happened was ... You know, it would have been easier for my wife and I just to move on with the next chapter of our life, but we heard from so many other childhood cancer parents at the time that said things like, "You guys need to keep this going because you can help my kid. My kid is still fighting cancer."
Jay Scott: And so I'll give the credit to my wife because I wasn't into it with my whole heart, but my wife said, "Listen, we have a chance to help a lot of kids if we can do this right and get this organization going and get it really ... We're the only ones that could do it because we're Alex's parents." So it was because of Liz that we decided to keep things going.
Jay Scott: Up until the time that she died, we were part of another organization. It was a community foundation. We were just one fund out of a thousand funds that they had. When she died, they said, "Listen, you guys can't continue to be part of this fund." We had to decide do we want to become our standalone organization or do we want to do away with it?
Jay Scott: When my wife made me realize that we have a chance to help kids and change the world of childhood cancer, we thought, "You know what? We don't want other families to go through what we had to go through. Let's do this."
Quinn: Can I ask what your hesitations were?
Jay Scott: Pain. When you have a kid with cancer, it's a tough thing. When they die, it's the most difficult thing in the world. I think it was fear of reliving that pain over and over again, either by telling Alex's story or by getting close to other kids with cancer, that those kids would die. I was afraid that we would relive that pain again and again.
Jay Scott: But we realized that it's a small price to pay to be able to help kids. So we pushed on, we got through it. The early years were difficult, telling Alex's story over and over again, but now, it's a joy to tell it. Meeting the kids whose lives we've been able to save is amazing, but it's still so difficult when we get to know kids and they do pass away.
Quinn: Sure, sure. Well, you are working hard to put an end to that. It's pretty incredible. What were you doing as a career before this?
Jay Scott: I was a salesman in a publishing company. Selfishly, that's one of the reasons I didn't want to do this because I was making a lot of money and I didn't want to give up that income. My wife is much smarter than me and she said, "Listen, there's more to life than money and you'll have time down the road to make money, so we're going to help people right now."
Brian: So your full-time job is this?
Jay Scott: Yes, that's what we do.
Brian: That's incredible.
Jay Scott: Full-time, every day, 24 hours a day. It's all we think about.
Quinn: It's pretty incredible. We're thankful for what you're doing out there. All right.
Brian: Yeah, it's quite necessary. All right, we'll get into it a little bit more here.
Brian: What we usually like to do, Jay, is set up some context for the issue at hand and figure out how we can solve it. Specifically, how our listeners can take steps, actually take action, to support you and what you guys do. Quinn will get started with and I'll ask you weird questions.
Quinn: Let's do this. So Jay, if you've managed to listen to a few of our past episodes, one, apologies for you'll never get that time in your life back, and two, you might have heard us ask this question before. Instead of saying, "Tell us your life story," which we just did, we'd like to ask Jay, why are you vital to the survival of the species?
Jay Scott: Why am I vital to the survival of the species?
Jay Scott: I think one of the things that we do besides helping kids with cancer is we teach people that anybody can make a difference in the world. I think that's one of the things that Alex taught people.
Jay Scott: Before she came up with this crazy idea of setting up a lemonade stand to help kids with cancer, you would see lemonade stands, you wouldn't really see them set up to help various causes, but now there's thousands and thousands of lemonade stands that kids are setting up every year to help all kinds of different causes, which we think is great. She started a movement to help kids with cancer, but she started a movement that would teach kids that they can make a difference, they can impact the world. I think if you can teach kids at a young age that they can impact the world, it makes the whole world a better place.
Jay Scott: So I wouldn't say that I'm vital in that, but I would say that I was partially responsible for raising Alex, so in that way, I'm a little bit [inaudible 00:10:30].
Quinn: We'll take it, man.
Brian: You deserve some credit there.
Quinn: We'll give you credit. And it is. It is tremendous to see and we've talked about this in a variety of other issues, from climate change and things like that. Kids are much more aware than they've ever been. They're much more activated than they've ever been. Whether they should be or they need to be is a different question because there's an argument to they should just be able to be children, but at the same time, there's a real pride in watching your kids get excited about something they really care about.
Jay Scott: I think it's amazing. When I was a kid, we would have these boxes for Halloween, the UNICEF boxes. I hated doing it.
Jay Scott: Because I didn't understand what it was doing, but I think kids are much more informed nowadays about the world and about things that they can do to make a difference. They're passionate, passionate, passionate about it.
Brian: We've had several kids on the podcast as guests and it's like they're 17 years old or whatever and there's no chance in hell that they're not going to be world changers in the near future.
Jay Scott: Oh, absolutely.
Brian: Very impressive.
Jay Scott: My wife just got an email yesterday from a guy. It was totally out of the blue. He started off by saying, "This might seem as a little bit of an unusual email I'm sending you, but I'm an author and I have a novel coming out and I wanted to let you know that the main character in the book is based on your daughter because I read her obituary"-
Jay Scott: "In 2004 and I cut it out. I was so touched by what she had done in her young life." And when he was coming up with a novel, he was thinking about what the character would be like. In this particular novel, he modeled it after Alex. She died 14 years ago, and for him to just email us now is pretty incredible.
Quinn: Oh, that's pretty special.
Quinn: All right, let me take a quick step back and just throw some numbers at some people. Numbers aren't the thing that – I think we've discovered with climate and things like that in the past few years – numbers, stats don't move the needle for people, but I want to paint a picture for folks so we can keep digging into the story and really understand what's going on here. I'm just going right off the Alex's website here.
Quinn: Every year, 250,000 plus new cases of cancer affect children under the age of 20 worldwide. Childhood cancer's the leading cause of death by disease in children under the age of 19. So it's one-
Jay Scott: That's in the US, that's in the US.
Quinn: Yeah, in the US, right. About one in 285 children in the US will be diagnosed with cancer by the time they're 20. Two-thirds of childhood cancer patients will have long-lasting chronic conditions from treatment, and yet, despite all of this, childhood cancer research receives just 4% of the annual budget from the National Cancer Institute. We're going to dig a little more into that and what childhood cancer really means.
Quinn: Let's really focus on our question this week, which is why the hell does kid's cancer exist and how do we make it go away forever? Jay, talk us through a little bit. Are there cancers that specifically target children or cancers kids are more likely to get? When we talk about kid's cancer, what does that actually mean?
Jay Scott: Yeah. So most cancers kids get are cancers that are just that; they're cancers that kids get and it's very rare an adult gets them. They're unique to kids. There's about 26 different cancers that kids get.
Jay Scott: One of the ones that probably overlaps the most is acute leukemia, where adults get that, but it's the most common childhood cancer. I'm 50 years old. I know a woman who is, I think she's 49, and she has a childhood cancer. It's extremely rare, but it does happen occasionally. Kids don't get things like – I'm sure there's exceptions to every rule — but kids typically don't get lung cancer, breast cancer, prostate cancer, things like that because those are, a lot of times, take years to develop or sometimes they're from the outside world causing them. But kid's cancers are usually ... They think more and more that there's a genetic component.
Jay Scott: When Alex was diagnosed, we were told, "No, this is just sort of a random occurrence." Now they think 30 to 40% of kid's cancers have a genetic component where the kid is predisposed to get the cancer.
Quinn: And does now, 14 years on, how much science has been uncovered? And obviously, we have a long way to go. I know a lot of it has been we found out what we don't know. For Alex's specific cancer, has that notion been applied that it may have probably been hereditary, genetic in some way?
Jay Scott: You know, we haven't had Alex's specific case tested, but yes, some neuroblastomas, you have a predisposition. There's been some crazy, crazy advances in neuroblastoma and other childhood cancers.
Jay Scott: One of the big problems with childhood cancer is the treatment. Adults get chemotherapy. Their bodies get beat up from it, but they bounce back. Kid's bodies are growing so fast and the way chemotherapy works is it kills rapidly dividing cells. Well, kids, a lot of the normal cells in their body are rapidly dividing because they're growing. So the chemotherapy attacks the cancer and it attacks the good cells.
Jay Scott: What that does is – you said two-third of kids have some lifelong side effects – it gives them lifelong side effects, not always just from the cancer, but a lot of times from the treatment. Those side effects could be secondary cancers from the treatment.
Jay Scott: We know a kid now, Very-Well Tony. Actually, I just went to see him the other night in the hospital. He's been in the hospital since, I believe, April. So what's that? Seven months.
Jay Scott: So Tony beat neuroblastoma, which is the same cancer that Alex had.
Quinn: And can you just ... Do me a favor. Take a quick pause. Can you tell us what neuroblastoma is for everybody?
Jay Scott: Yeah. Neuroblastoma is the most common cancer in kids under four. It usually starts in your adrenal gland. It's not a brain tumor, but it starts in your nervous system outside your brain, and usually starts in the abdomen and can spread from there. It's extremely aggressive. If you have Stage 4 neuroblastoma and it doesn't respond to treatment right away, you typically don't survive.
Jay Scott: But there's also a type of neuroblastoma called 4S, which, if you get diagnosed with that, it just spontaneously disappears one day.
Jay Scott: Yeah. The doctors don't know why, but they're trying to figure out what causes it to do that because if they can figure out what causes that cancer just to spontaneously disappear, couldn't they make other neuroblastomas disappears?
Quinn: Sure, sure.
Quinn: Okay. So Tony has neuroblastoma. He's been in the hospital since April and you said you went to go see him.
Jay Scott: Yeah. Tony was cured from his neuroblastoma maybe ... He's 14, 15. I think he was cured when he was four. And then two years ago, he needed a kidney transplant as a result of the chemotherapy because his kidneys were damaged from the chemotherapy. So, he got a kidney transplant. His dad donated one kidney. After Tony got the kidney transplant, he started having these stomach aches and come to find out, he got post-transplant lymphoma. It's a rare side effect of getting an organ transplant.
Jay Scott: So he's fighting his second cancer. He's on the last treatment for that, okay? The cancer's gone. He needs one more treatment just to make sure it stays away. He gets the last treatment and his bowel perforates. He's hospitalized in the ICU with this infection.
Jay Scott: He was in coma for months and then the lymphoma came back. They ended up treating it again. He's in remission again, but he was in a coma for months. Now, he's got months and months. They didn't think he was going to live, but now he's up, he's awake, he's talking, he's somewhat paralyzed because he was in a coma for so long. Now they've gotta get his muscles working again.
Jay Scott: And so all of these things that are happening to him now are as a result of the chemotherapy that he got when he was a very young kid.
Quinn: I've never really thought about that, but it makes so much sense. Your body is changing so much until you're, arguably, 18, 19 years old, which is exactly what chemo's made to attack is your cells changing, sometimes too much or out of hand or too large.
Quinn: I think often of – and I feel like I've said this in previous episodes for other topics – but there's things we're going to look back on, just like we look back on now, where we look back on the difference in medicine between World War I and World War II and how World War I, we didn't have penicillin or even anesthetics. We gave guys some whiskey and, "Bite down on this," and we cut their leg off, and it was the best way to stop an infection and I'm glad someone figured out how to do that, but I feel like chemo's the same way where we're going to feel lucky we had something, but look back on it as this barbaric, very blunt, sort of nuclear option and go, "I can't believe that's what we put people through," much less children, who not only took it harder, but in two-thirds of them, it affected their body for the long-term. That's pretty incredible.
Jay Scott: The wave of the future – and it's starting now for cancer – is targeted therapies.
Brian: Yeah, yeah. Let's get into that. Progress clearly has been made.
Jay Scott: So therapies that attack the cancer and leave the rest of the body alone. That's the wave of the future for kids, certainly, and adults. There are some that are out there and they're amazing when they work. They don't work on everyone.
Jay Scott: There's not going to be one magic bullet for all cancers. It's going to be theses targeted therapies for not even individual types of cancers, but sub-types where this therapy is going to work on a sub-type of one cancer. It could even work on a sub-type of many cancers. That's what we need. That's what we're working towards and we're getting there.
Quinn: I want to hear in a minute a little bit more about, specifically, what Alex's is working on on that front because I know you guys are doing some pretty cool shit. Immunology is forefront. Jim Allison just won the Nobel for that, which is pretty amazing.
Quinn: So a little more generally besides what you guys are working on, in the past, let's talk about the past 14 years. What progress has been made in fighting these type of kid cancers over the years? What has changed, I guess, since you got started?
Jay Scott: I think one of the big things that's changed is the genomics work that they're doing on cancers when a kid is diagnosed so that they know more about the tumor and what treatments what might work and what treatments might not work. If they can do the genomic sequencing on the tumor and know that this tumor is going to be resistant to a particular type of chemotherapy, let's not expose the kid to it and make them sick when it's not going to do anything but hurt their body in the short-term and the long-term. I think that's one thing.
Brian: So that wasn't happening 13 years ago?
Jay Scott: No, no.
Jay Scott: No, not at all. We recently put on a conference where we brought in the top childhood cancer researchers all into one place. One of the lectures that I was listening to, I'm kind of glad I didn't hear it when Alex was diagnosed, but basically, I was looking at the charts and basically what it showed was that the exact type of cancer that Alex had, she really had no chance at surviving.
Jay Scott: We weren't told that then because they didn't know that much, but because of the stage she was at and the different mutations that she had, she basically probably had a 5% chance at survival, where at the time, we were told she probably had a 50% chance of survival.
Quinn: How does that make you feel now? Which would you have rather heard?
Jay Scott: I would have rather heard the 50% because hearing 5%, it just beats you down, you know?
Jay Scott: It actually brought tears to my eyes when I saw the chart, just thinking back that she really had no chance. She always believed that she had a chance to survive, and so did we because we just were glass half-full type of people.
Jay Scott: When she had the cancer, one thing that we learned was you make the most of every single day. You come home and you don't have plans to do something, you just do it because you don't know if you have tomorrow, you don't know if you're going to be sick tomorrow. Every time we tried to plan a vacation or an outing or anything, she would get sick, so we would just do things spur of the moment.
Quinn: Talk to me about other advances and innovations that have happened in the 14 years, and then if you can sort of interweave how the organization started to push its way into actually influencing this research and these innovations, and then we'll skip up to this concert ... Concert? Conference. It feels like a rock concert that you guys had, which I wish I had been a fly on the wall at. Yeah, just talk us through how that's evolved.
Jay Scott: Sometimes things happen sort of serendipitously.
Jay Scott: `One of the very exciting advances for Alex's type of cancer – and it wouldn't have helped her, but it's helped a lot of kids – this researcher that we know well, she got a call one day and it was from a family, a childhood cancer family. They said, I'm paraphrasing here, but basically said, "Well, I don't know if this will be interesting to you or not, but we've had," I think it was three or four cousins, "that have all had neuroblastoma. Is there anything that our family could contribute to the greater good for other people with neuroblastoma?" The doctor said, "Well, I would love to get blood samples from everyone in the family who's surviving, and maybe those who didn't even have neuroblastoma."
Jay Scott: She did genomic sequencing on all the blood from this one family and they all had the same mutation in every cell of their body called an ALK mutation, A-L-K. The doctor did some research online and realized that there was a pharmaceutical company that was doing a trial for lung cancer with a drug that went after this ALK mutation. She talked to the drug company and the drug company agreed to release some of the drugs for kids.
Jay Scott: She opened this trial and I think the first Phase I trial, in kids, you need much smaller populations that adults, the first phase either had 9 or 11 kids. Actually, it was 11 kids and they either had neuroblastoma or they had this lymphoma that was resistant to treatment that was ALK-positive. The 11 kids got it and the one girl, Edie, was much like Alex where Alex ran out of treatments when she was about four. Edie was about four and she ran out of treatments and Alex got her first clinical trial and Edie got her first clinica trial.
Jay Scott: Edie took this medicine. Tasted disgusting, okay? She took it by mouth. She took it for a month and then she went and got an MRI and when you have a kid with cancer and it's time to get scans, it's a huge amount of anxiety on the parents and the kids.
Brian: Oh yeah.
Jay Scott: Usually the sign is if it's a quick MRI, it's a good thing. If it's a long MRI, then things are not going well. So Edie's parents were in the waiting room one hour, two hours. The doctor came out and said, "It's going to be another hour." Three hours. They're freaking out.
Jay Scott: They go into the room with the doctor afterwards and the doctor says, "I don't know how to tell you this, but I'm sorry it took so long. I went down and I talked to radiology and they told me that the surgery went well and I told them there wasn't surgery. You got the wrong scans there. But her cancer's gone."
Jay Scott: "So the reason it took so long is because we scanned her entire body because we were trying to figure out where the cancer moved to." Her cancer disappeared after a month of taking this oral medicine.
Quinn: Oh my god!
Jay Scott: And so you can imagine those parents who went from thinking the cancer has spread to being told the cancer was gone. And so get back to that family that called this researcher, they saved these kid's lives, right?
Jay Scott: Because had she not figured that out, then these kids wouldn't have survived. And of those 11 kids that got the treatment, 9 of them survived.
Quinn: My god. And when was that?
Jay Scott: That was about six years ago.
Quinn: And how are they doing since? Do we have any idea?
Jay Scott: Well, I know Edie very well. I know another kid, Zach, very well. They're both doing great. Those are the two kids out of the 9 who survived that we know well.
Jay Scott: The amazing thing about this medicine was it was a pill. The kids didn't lose their hair. They didn't feel sick to their stomach. They didn't have to stay overnight in the hospital. It targeted that one mutation; it didn't harm the rest of their body. And they were in a Phase I trial. They were just trying to figure out what the right dose was; they weren't expecting it to work.
Quinn: Sure. That wasn't even developed for them. This was, as you said, a little bit of alchemy.
Jay Scott: Yeah. It was developed for lung cancer because a drug company can't make any money on childhood cancer drug for the most part because there's not enough kids. It'd cost hundreds of millions of dollars to develop a drug. Edie took that drug for four years, maybe five years, and then they didn't know what to do. They had her stop taking it and we saw them a couple of months ago an her cancer's still gone.
Quinn: Oh my god.
Jay Scott: I think she's in fourth grade now, maybe, and she's doing amazing. And then Zach, he had lymphoma. He was so sick that his brother came home from college to say goodbye to him, they thought he was dying, and he started taking this pill and now he's an all-star baseball player in middle school.
Brian: What's going on with this treatment now? It's still being used? Is it on a larger scale? Are more kids using it?
Jay Scott: Now they're using it smarter where they do the genomics testing on the kid to see if they have the ALK mutation. You can have an ALK mutation in the tumor or you can have it every cell of your body. They test the kid to see which one they have, and if they have it in every cell of their body, then they get the drug. Actually, they're on the second or third generation of it now, so it's actually even better.
Jay Scott: But again, they're using it smarter, rather than on everybody. The cool thing is we gave this doctor funding to speed up the trial. So from the discovery of this mutation to the clinical trial was only 18 months. It was a year and a half, which is, as you know, in medicine, that's very fast.
Brian: Yeah, that seems very fast. Wow.
Jay Scott: Yeah, very fast.
Quinn: So that's a situation where you guys started to get involved and really start funding these things. Again, that was a little bit of alchemy, but once it was recognized, you were able to help push it along. Like you said, developing kid's cancer drugs is not profitable, so the drug companies don't do it because capitalism, which is, on one hand, understandable, and the other end, infuriating.
Brian: Is that why they only get 4% of funding?
Quinn: Well, that's the other thing. That's private companies.
Quinn: But on the other hand, kid's cancer gets 4% of federal funding. I'm assuming the answer to this is Alex's Lemonade Stand Foundation.
Quinn: Of the innovations that have happened in the past 10, 14 years, where does the funding for these things come from?
Jay Scott: I think they scrap it together. There are childhood cancer researchers who get government grants, but there's a lot of philanthropy. So either Alex's Lemonade, there's some other organizations or a family whose kid has cancer decides to fundraise for the doctor that helped them, there's a lot of that going on.
Jay Scott: I think the real opportunity ... I don't blame pharmaceutical companies. They need to turn a profit, unless they're a nonprofit pharmaceutical company, because otherwise they wouldn't exist for anybody's benefit. But the real potential for childhood cancer is either to get the government to give more than 4% or to find targets for cancers that would help kids but also would have an implication in an adult disease or some other kind of disease. It doesn't even have to be cancer. There could be a treatment that could be used in some chronic disease where the big money is, like diabetes or heart disease, that could help cancer. You never know.
Jay Scott: The problem with cancer is you treat it and then you either die or then it's gone. It's usually not a drug that you're on for the rest of your life. If it's a drug you're on for the rest of your life, then they can make money on it.
Quinn: Right, right.
Brian: So is that why the amount of federal funding is so low is because it only would help children, it wouldn't help everybody who has cancer?
Jay Scott: I think, although I don't agree with that, I think that's the reason behind it.
Jay Scott: Because you can have a discovery in childhood cancer where you have, basically, the kids getting cancer, there's not a lot of other noise going on because they haven't been exposed to different chemicals and environmental things throughout their life. I think it's a good model for adult cancers, but I think the reason it only gets 4% is because people look and go, "Well, listen, how many hundreds of thousands of cases of lung cancer and breast cancer and prostate cancer? It's impacting more people so we want to help them."
Jay Scott: But if you look at life years lost to cancer, that's where childhood cancer has a bigger impact because if a kid dies at four, that's 80 years of life lost. If a man, who's 80, dies from prostate cancer, it's five years of life lost.
Brian: Yeah, yeah. That's interesting.
Jay Scott: You can talk to any adult with cancer and you say to them, "Would you rather have a treatment that could save your life or would you rather have a treatment for that kid that you saw in radiation oncology's life?" I would say 8 out of 10, 9 out of 10 are going to say, "I'd rather give the kid a chance."
Brian: Has it always been like that? Has the funding always been that low or has that changed over time?
Jay Scott: Yeah.
Jay Scott: Yeah, it's always been like that.
Quinn: Are you guys or anyone else doing any specific lobbying to increase that?
Jay Scott: There's people who try it. There's people who are working on it. We don't get into lobbying. It's just not something that interests us.
Quinn: It's a whole nother beast. Sure.
Jay Scott: Well, we really want to get these targeted therapies because one thing that we haven't talked about is the rest of the world, right?
Quinn: Mm-hmm (affirmative).
Jay Scott: 250,000 kids in the world develop cancer. We don't even say are diagnosed because there's parts of the world where kids die and they never get diagnosed.
Brian: Oh, right.
Jay Scott: Many, many parts of the world, even if a kid gets diagnosed with cancer, they're not going to be able to get the treatment because of the side effects from the chemotherapy. It exposes kids to infections and they don't have the infrastructure to protect the kid. But if we can get targeted therapies where the kids aren't going to get massive infections, then we can treat kids everywhere.
Quinn: That'd be-
Jay Scott: Right? Take a pill.
Brian: Yeah, sounds like magic.
Brian: Jay, over the years, how has your focus changed or how has the Foundation's focus changed at all? Any specific moments or specific cases or children that have pushed you guys one way or another?
Jay Scott: I think when you have successful stories, it makes you want to do more of that. We've had some of those, both the kids who you meet like Edie or Zach that have been saved or the research projects. We were an early funder in a project that, at the time, was considered pretty far out there. My wife and I, we don't make the decisions on projects to fund. We have the best scientists to help us make those decisions.
Jay Scott: This guy came to us with this project that he had been working on, but he needed funding. He thought that he could trick the body into thinking that the cancer was actually polio, and since we all get a polio vaccine, that it would fight off the cancer on its own.
Jay Scott: It was considered a little bit crazy. We gave him some seed funding, a few hundred thousand dollars, and he was successful. The story's been on "60 Minutes" a couple of times where he has tricked these patient's bodies into thinking that their brain tumors were polio and the body just started fighting it off on its own. Those kind of exceptions-
Quinn: Oh, shit.
Brian: I mean, what? That's insane!
Quinn: That's incredible. It really is. It's those people who go, "Hey, okay," and this is, I feel like, so critical in just a larger conversation on our education system, but teaching children and people, instead of saying, "Well, it's not A, it's not B. Maybe it's not A plus B. Maybe it's like A plus peanut butter is what's going to get us there." And then all of a sudden, you have this moment, which, again, I assume many of these situations are similar to any startup which is that they fail, but in situations like that, it's incredible and you have no idea what you're going to find.
Jay Scott: But it's so obvious, isn't it?
Jay Scott: Polio was eradicated so your body, if your body gets exposed to polio, it fights it off for the most part, although we're seeing now some other weird disease coming around that's polio-like.
Quinn: Right, yeah. Saw that.
Jay Scott: This guy thinks, "Well, the body's always on the look out for polio. Let me try to trick it." It's so cool.
Quinn: This is one of those ... We need to start having recurring segments where I go, "Brian, how would you start to figure out, from step one, to teach a body to think that cancer is polio? Step one, literally the first thing ..." Ugh, I can't even ... God, these people-
Brian: This is like that exercise, I think I had to do this in school, where your teacher was like, "Tell me, step-by-step, how do you make a peanut butter and jelly sandwich?"
Quinn: And everybody fucks it up.
Brian: Everybody fucks it up. But this is cancer, so.
Quinn: Except, right. Yeah, got it. So Jay, all right. Let's talk-
Jay Scott: Just moving on that, it reminds me of the time where I was I invited to go for a run, and then when I got there, I realized it was straight up a hill. And that-
Quinn: Look man, you didn't tell me you were injured ahead of time.
Jay Scott: I just imagined it was a straight, flat run.
Jay Scott: And the person that was with me had to stop because their achilles hurt.
Quinn: Look, we were both injured that day. Let's just leave it out there.
Brian: This is fun. This is fun.
Quinn: Yeah, I'm glad this is good for you. Brian, you're coming on the next one.
Brian: Yeah, our mutual friend Quinn here is trying to get me to do something called a Spartan Race.
Quinn: Yeah, it's going to be great.
Jay Scott: Don't do it.
Quinn: You gotta see what you're made of.
Brian: Did you hear what he said? "Don't do it."
Quinn: Good, good. Thanks, Jay. All right, so let's fast-forward a little bit. Talk to me about this conference. What were you guys getting into? This sounds pretty amazing.
Jay Scott: Okay, so the way that we have always funded, up until this point, is researchers apply to us with an idea and scientists analyze the proposals and score them and we fund the best ones.
Quinn: And just for quick context, how many grants and institutions and such have you guys funded in the past and are you currently funding, on average?
Jay Scott: At any given time, we're probably funding 100.
Jay Scott: So we run about 1,000. The small ones would be $100,000, and the big ones would be like $1.5 million bucks.
Jay Scott: Okay. So what you get from that is you get some very creative ideas if you were going to plot them on a map, they would be spread out all over the place because we don't really restrict what their idea is except it's childhood cancer, but they could take any approach at all. You get some really innovative and creative ideas.
Jay Scott: As we've grown, the thing that has always bothered us is, coming from the business world, you would never approach a business problem that way where you just told your stuff, "Hey, give us creative ideas and let's do some of them." You would approach them in an organized, in a methodical way.
Jay Scott: So what we said was, "Let's bring 100 of the best minds in childhood cancer together and tell them they've got $25 million to spend. How would you approach your problem?" And we identified eight problems in childhood cancer.
Quinn: And what were they?
Jay Scott: Six of them were cancer type, so neuroblastoma, high-risk neuroblastoma, high-risk leukemia, two different types of high-risk brain tumors, two different types of high-risk sarcomas, and then clinical trials, and big data.
Jay Scott: We said, "Listen, how would you approach your problem? If you were going to chart it out and map it out, identify the key things that you would get done first. Figuring, if we can get those key things get done first, it's going to help all the other researchers do their job because why should you do what should be done seventh first, when you should be doing what should be done first, first?"
Jay Scott: It was really cool, it was really amazing. We saw some recurring themes that kept coming back. Over the next couple of years, we've committed to spending $25 million on these ideas to move things forward. We want projects that, once they're done, they're done and people don't have to worry about figuring out those topics again. It's going to help the greater community. It's pretty cool stuff.
Jay Scott: Some of the ideas that kept coming back is single-cell genomics. When you do genomics on a tumor, you're not necessarily seeing the whole picture because you're just seeing the picture of the spot that you actually did that biopsy from. There could be something else totally different going on in a different part of the tumor, so we want to take single cells from different parts of the tumor and do the genomics on there because it could tell you something totally different about the patient.
Jay Scott: Another cool thing is monitoring tumors by taking just regular blood. We've become sophisticated enough where, for some cancers, you can actually monitor the tumor activity by just doing a regular blood draw and looking for circulating tumor cells within that blood.
Jay Scott: The way you do that is different for every cancer, so they don't know how to do it for a lot of childhood cancers, but we could, theoretically, pay to get that done so that we can then monitor these kids just by simple blood draws, which they get every week anyways and you would know what's going on inside them. You wouldn't have to give them anesthesia to get an MRI, you wouldn't have to wonder what [crosstalk 00:42:19] a bone marrow biopsy.
Brian: That'd be incredible.
Jay Scott: Just take some blood. It's pretty cool stuff.
Quinn: Wow. So what were some of the really constructive, pragmatic outcomes from the conference?
Jay Scott: Well, it's only been a little over the month, so we're still narrowing down the final ideas from each group, by they actually have a deadline of December 1st to get those final ideas to us, so they have two more weeks.
Brian: Couple more weeks!
Jay Scott: Yeah, two more weeks. But we're really excited about this because I think we're going to get some incredible things out of there. Yeah, I think-
Quinn: Were there some collaborations that surprised you?
Jay Scott: Well, yes. Well, because some recurring things kept coming back from the different cancer types. We actually want these groups and we're highly encouraging them to do some cross-pollination, work together. Doesn't matter if you're studying brain tumors; you may have the same problem as somebody studying sarcomas or leukemia, so you gotta talk to each other.
Jay Scott: That's one of the things that came out of this was they realized that there's a lot to be learned from people. They know all the people that are studying the same cancers as them; they don't necessarily know the people that are studying different cancers. By sitting them down in the same rooms, they've realized that they can learn from other people outside of their specific sub-specialties.
Quinn: That's so cool. I cannot wait to see. What are you guys doing to keep track of that, I guess, and publish the advances that come out of these things or how the research goes?
Jay Scott: We're going to publish a white paper so the whole community knows what we're doing once we figure out what the priorities are for each group and we're going to be very transparent about these and what we're doing and how the funding is working and everything. It can only benefit the entire community.
Jay Scott: The other thing that is really cool is big data. We're getting into big data big time right now.
Quinn: Yeah, didn't you guys build the matrix or something like that for kid's cancer, basically?
Jay Scott: Yeah, we opened up our own lab, but it doesn't use test tubes and beakers; it uses computers and compute programmers to do research and to help researchers. It's pretty wild. These people are so smart, it makes me a little bit scared to be around them.
Jay Scott: But one of the problems with childhood cancer is the data they have is not huge enough because you have all of these researchers in their own labs doing their research, but they don't have the benefit of other researchers that are doing the same kind of research in a different lab. The first thing that our team is doing is they're harmonizing all of the data that's available in the public domain. It's something like 3 million tissue samples that are available in the public domain, but you can't compare them because it's like looking at apples and oranges because the people that have put the information there didn't take care about how they published the data. Our team is using artificial intelligence to harmonize all this data and then they're making it freely available to scientists worldwide.
Jay Scott: Our goal for doing it was for childhood cancer, but really, it has implications for any scientist, especially with rare diseases.
Brian: Yeah, that seems only good to be able to see all the other works that's happening and compare it and see what works and what doesn't.
Quinn: Right, right.
Jay Scott: Like you could make a discovery that some completely different disease has similarities to the disease you're studying, and maybe there's a drug that's being used in that disease and maybe it'll work on yours, right?
Quinn: Sure, yeah. What are the odds? Who knows? But if you don't put it all together, it won't happen. That's pretty incredible.
Quinn: All right, Jay, moving onto the action portion here, you guys, so much of your fundraising comes from how many lemonade stands are there a year?
Jay Scott: Tens of thousands. I don't actually know how many, but-
Quinn: That's pretty amazing.
Jay Scott: Tens of thousands.
Quinn: Pretty amazing.
Jay Scott: We have a whole team, that's all they do is work with lemonade stand hosts.
Quinn: That's incredible. Well, listen, our listeners are pretty activated. They've spent the past couple of years maybe marching for the first time or throwing their money to 50 different places because the world's on fire. Hopefully that's calming down a little bit, but we want to point them in the right direction, really specific ways so they can, as we say, take action with their voice, their vote, and their dollars.
Quinn: Let's talk about their voice. One of our goals is to shine a light on where we need to go as a people. A lot of times, pros and cons, that comes down to our elected representatives. You guys aren't interested or working on lobbying yourselves, but voters can do that in their own way. That's how democracy's supposed to work. So what are the big, actionable questions the rest of us should be asking of our representatives?
Jay Scott: Well, I think making childhood cancer a priority is important and I think it's a relatively low-hanging fruit in that a little bit of money can go a long way. Who doesn't want to help kids with cancer? When you think of the worst diseases here in the United States, cancer's always at the top of a lot of people's list, right?
Quinn: Mm-hmm (affirmative).
Jay Scott: When you see a kid, it makes it even worse. One of the problems that we've had with childhood cancer is there's bills passed in Congress and they never get funding. They're passed but they never get to the funding part of it, so tell your Congresspeople, tell your Senators, "Fund the childhood cancer initiatives. Don't just pass them. Actually give them funding."
Jay Scott: Because the government giving funding, they can dwarf what Alex's can do with the signature of one pen, right?
Quinn: Sure, right.
Jay Scott: But I think sometimes, politicians want to be seen supporting something and they pass it, but if it doesn't have funding, then there's really nothing there.
Quinn: Sure. I guess that applies to how we use our vote as well. What do you feel like we should be looking for in candidates going forward? I guess, who are models and your allies that are out there? Are there any?
Jay Scott: Well, I want to talk about something different and that's preexisting conditions.
Quinn: Yes, please, let's do that. Absolutely.
Jay Scott: Okay. I'm more familiar with this part of childhood cancer. Preexisting conditions is huge with childhood cancer patients because as we talked about, two-thirds of childhood cancer survivors have lifelong side effects. Without the coverage of preexisting conditions, these kids are either going to die or they're going to live-
Quinn: And they're going to be broke.
Jay Scott: They're going to be live and be broke or have a horrible quality of life because they're just going to live with these problems because they can't afford to get the treatment they need. If I'm going to tell your listeners one thing, it's to support people who support preexisting conditions 100%, no asterisks next to that. It's gotta be 100% coverage of preexisting conditions.
Quinn: That really does dial it in, that statistic about two-thirds of kids. And it really, you know, you dial it down to a more personal level. I remember when this – and it's still a debate, which is insane, but at least it's still partially a law – but it's incredible, before it wasn't. It made you go, "Do these people not know anybody with a preexisting condition?"
Quinn: You can't know somebody with one or someone that has been denied coverage because of one, much less a fucking child, and vote against it. You can't, as a human being, and it's just-
Jay Scott: It doesn't make any sense.
Quinn: It doesn't make any sense.
Jay Scott: What's the benefit of not covering a preexisting condition? To make the insurance company more money? That's the only benefit.
Quinn: So their dollar, how can our listeners best contribute to kick cancer in the balls? I guess, if we're going to talk about Alex's specifically here too, I know you guys also fund a bunch of travel, so if you could talk about that for just one sec.
Jay Scott: One thing that most people would never know, and we certainly never knew, I didn't even know childhood cancer was a thing before Alex got diagnosed. I thought it was a thing of the past, right?
Jay Scott: But with childhood cancer, you can't get the same treatment everywhere. The treatment you get is based upon where you live. If your kid is first diagnosed with cancer, you probably are going to get the same treatment, but if their cancer is resistant to that treatment or they relapse, there's different treatments everywhere in the country.
Jay Scott: I think it's 70 or 80% of kids that get childhood cancer are on a clinical trial.
Brian: Oh, wow.
Jay Scott: Even if it's standard treatment, sometimes it's a clinical trial, and not every hospital can run a clinical trial. If your kid relapses or they have a cancer that never goes into remission – they call it no evidence of disease in childhood cancer – if they never go into no evidence of disease, they have to probably either go into a Phase I or Phase II clinical trial. There's only a handful of institutions around the country that do Phase Is and there's a few more that do Phase II.
Jay Scott: What happens is the family has to make a decision. Are they willing to move? Are they willing to travel back and forth to get to a hospital that has more treatment options? It's something that we had to do.
Jay Scott: All right, so when Alex was diagnosed, we lived in the northeast. We lived in Connecticut. We went to Boston for a second opinion. We went to New York City for a third opinion. Those were both within about 80 miles of us. We got three different opinions on how to treat her, so they weren't even going to give her the same treatments. And then after a couple of years, they all agreed on the treatment to give her and that was none. They said, "Don't give her anything. Let her die." [inaudible 00:52:37]
Jay Scott: And then one doctor pulled us aside and said, "Listen, I think there's a doctor in Philadelphia that could help you guys. I don't want you to tell my colleagues that I told you this, but you should give them a call." So by going from Connecticut down to Philadelphia for our first clinical trial, it didn't save Alex's life, but it added four years onto it.
Jay Scott: Had we stayed in Connecticut, she would have died, but by coming to Philly, she lived for four more years, which is a long time.
Jay Scott: So what we do at the Foundation now is we'll pay for families who need to travel for treatment. We'll pay that travel. We can't pay for the treatment, but we can pay for the travel for them to take that out of the equation because that should not be a decision maker. The family may decide that their kid has seen enough treatment and they don't want to treat them anymore, that's their decision, but whether they can afford to get there should not be one of the variables that they're considering. We take that out of the equation. We'll pay for them to get there and get the treatment.
Brian: That's just any family that this problem comes up, they can then contact you and say, "Here's what's going on," and you can help them out?
Jay Scott: Yeah. It's usually through their social worker at their hospital or at the hospital where they're going.
Jay Scott: The average family that we help through this makes $34,000 a year.
Brian: Yeah, so pretty helpful that you're there. Jesus.
Quinn: Jesus, wow.
Jay Scott: Some of them make more, but the average is $34,000. If you make $34,000, you can't afford to travel for treatment.
Quinn: You can't afford to do a lot of things, much less-
Brian: Yeah, let alone be one person, but change your whole family or transition your whole family to another city? That's wild.
Jay Scott: Can I tell you a quick story?
Brian: Sure, sure.
Jay Scott: I was traveling for work, I was in Houston. I get an email from this doctor in Boston and he basically said, "Hey Jay, not sure if you remember me. You guys gave me a grant a few years ago to do some research. I'm emailing you, I need a favor. I have a patient who has relapsed leukemia and we have no treatment options for him in Boston." If you have no treatment options in Boston, that's a big deal.
Quinn: Yeah, right?
Jay Scott: Because they're one of the medical centers of the country. This was a Tuesday night. He said, "I have an appointment that I made for this family in Philadelphia on Thursday morning," so it was basically one day away. "The problem is they don't have a credit card and they don't have a car and they don't have a way to get from Boston to Philly," which is about 300 miles, so not that far. "Is there anyway that you could fast track them with your Travel for Care program?"
Jay Scott: There's a clinical trial going in Philly that I'm very familiar with and it cures about 90% of people with relapsed leukemia. So this kid stays in Boston, he has a 0% chance of survival. He comes to Philly, he gets into this trial, he has a 90% chance of survival for the cost of getting them 300 miles. That's a no brainer, right?
Jay Scott: So we get the family to Philly and the kid got into the clinical trial.
Brian: That's amazing!
Jay Scott: Pretty awesome.
Brian: Like that one little thing literally saved his life. One little thing.
Quinn: That's incredible.
Jay Scott: Yeah. The craziest thing about this treatment is it's immunotherapy and the way you know if it's working is the patient usually goes into a coma. You have to tell the family going in, "Listen, this is going to be a tough treatment, especially if it works because if it works, the patient's going to be in a coma for a little while."
Jay Scott: How scary is that?
Brian: Yeah, that's wild.
Jay Scott: But that's a sign of good things happening.
Quinn: Jesus, wow.
Brian: All right, well.
Quinn: Okay, so that is essential. Jay, where are they going to go to contribute to save lives here?
Jay Scott: You know, if you want to contribute to help kids with cancer, you can certainly do it through Alex's Lemonade and go to our website, AlexsLemonade.org. We have a model that anyone can be part of Team Alex. We have tons of different ways that people can get involved, ranging from making a donation to hosting their own fundraiser to coming to one of our fundraisers. We make it easy for people to get involved and engaged and get their kids involved and get their schools involved.
Jay Scott: If you don't want to give to Alex's, give to another childhood cancer organization.
Quinn: Sure, I love it.
Brian: Oh yeah, that's awesome.
Jay Scott: That's doing work. Research to make sure they're doing good work first.
Brian: Right, right. Of course.
Quinn: Awesome. And obviously, we'll put all that stuff in the show notes.
Brian: In the show notes? Yeah. This is, wow, this is incredible. This has been an amazing conversation. We know we've kept you for a little bit and we'll wrap it up here in a little bit, but first of all, thank you so much, Jay.
Jay Scott: Oh, thank you!
Quinn: Thank you.
Jay Scott: It was an interesting one. You guys are pretty special.
Quinn: Easy now.
Brian: Hey, I have a quick question.
Quinn: Oh boy, this could be anything.
Brian: No. Well, sure. How did Alex and you guys raise thousands of dollars selling lemonade when you first started doing it? This whole time, my mind is blown.
Jay Scott: This was crazy. She kept asking us to set up this lemonade stand and when she first asked us, she was getting a stem cell transplant in the hospital and it was in the winter. We said-
Brian: Oh, like, "Not a good time for lemonade."
Jay Scott: Yeah, not a good time for lemonade.
Jay Scott: So she kept pestering us when she got out of the hospital. Finally, one day my wife said, "What do you want to buy? I'll just buy it for you. You don't need to set up a lemonade stand." She said, "No, I want to give it to the doctors." She said, "I want to give it to the doctors so they can come up with treatments like the one I got in Philadelphia." That first treatment she got in Philadelphia impacted her so much.
Brian: Right. Jesus.
Jay Scott: This is a crazy story. When she went into the hospital for that first treatment, she was on morphine 24 hours a day, the cancer was as high as her neck and as low as the bones in her left foot. She went in for this experimental treatment that required her to be in isolation inside a lead room where the walls and the ceiling and the floor are made of lead, covered in plastic, behind a lead shield, and then anything that goes into the room has to be thrown away. Then they injected her with this radioactive liquid. It went through her bloodstream and attached to the neuroblastoma from the inside and radiated it from the inside out.
Quinn: How old was she?
Jay Scott: She was three. She was almost four, but she was like an old lady, so she was pretty mature for a three-year-old.
Jay Scott: Which is like a five-year-old. She had to stay in this room until she was no longer radioactive and it took three days. Only one of us could go in at a time. We had to wear a radiation meter in case we were exposed to the radiation.
Jay Scott: When she got out, three days later, she said two things. This was right after Thanksgiving. The two things she said were, "That treatment worked," and Liz said, "What do you mean, 'The treatment worked'?" She said, "I could tell by the way I feel." And then she said she wanted to go shopping for a Christmas dress and she was completely off pain medicine.
Jay Scott: So that treatment impacted her so much, she wanted to set up this lemonade stand to help those doctors. When we finally realized why she was doing it, we didn't want her to be disappointed. We both come from large families, so my wife was calling all the siblings telling them to come over to get lemonade.
Brian: Come on down? Yeah.
Jay Scott: And one of the siblings called the newspaper. That's why so many people came.
Jay Scott: And so Alex, I think she was supposed to open at 10:00, and she was so excited that she laid out her clothes the night before. She got out in the front yard by 7:00. People started coming up. And actually, when we woke up in the morning, people had left stuff on the front porch. So many people came, some of them had smiles, some of them had tears, but they just kept coming and coming and coming.
Jay Scott: Just to round it out, last year, we were going through a crate of old pictures and letters and we found the letter that she got on that first day from this old man who came up, and he didn't really say anything to her, and he handed her a card, and there was $100 in it. He didn't know her from anything, right?
Jay Scott: It said ... Whew. It said, "Alex, your parents sure must be proud of you because I know I am." I always wondered what that man's story was, what made him give that $100.
Quinn: Sure. Wow. Well, I think that's the thing about cancer. Everybody knows somebody, everybody's lost somebody. Plenty of people have had it themselves, so it does connect us in a lot of ways.
Jay Scott: And you know, there was certainly a story there and we'll never know what his was.
Brian: Right, right.
Quinn: Sure. Wow. Well, thank you to that gentleman, for sure.
Brian: How did you have enough lemonade?
Jay Scott: We didn't. I ran out to the store four times.
Brian: I mean-
Quinn: Brian is so concerned about the logistical specifics of how this actually worked. All right Jay, this has been tremendous. Last couple of lighting round questions for you here.
Brian: Yeah, yeah.
Quinn: When was the first time in your life when you realized that you had the power of change or the power to do something meaningful?
Jay Scott: I would say when my wife convinced us to start Alex's Lemonade. I didn't really think that ... Up until that point, I had one goal in life and that was to make enough money to buy my parents a house. I never was able to do that, but knowing that we could help other kids, it was better than that.
Quinn: That's pretty amazing. Jay, who is someone in your life that has positively impacted your work in the past six months?
Jay Scott: Wow. I would say Tony, Tony the kid that I talked about earlier who's been in the hospital.
Brian: Sure, yeah, yeah.
Jay Scott: I work hard every day; when I think about Tony, I work even harder. When I went to see him the other night, and seeing what he's overcome, where he didn't talk for six months and now he's talking again, he wasn't able to move his arms and he's moving his arm, I texted his mother and said, "Is there anything that I could bring for you guys?" She said, "Tony's had a craving for Swedish meatballs from Ikea." I said, "I didn't know Ikea sold food. I'll go look for them."
Brian: Oh yeah! Meatballs, ice cream cones, and hot dogs, I think.
Jay Scott: It was an adventure finding them. When I got to the hospital and I gave him and he was eating those Swedish meatballs when he was on a feeding tube for all those months, that kid makes me a better person and makes me inspired, makes me work harder.
Quinn: Oh man, that is awesome.
Jay Scott: We have a big event in January called the Lemon Ball. Last year, he and his family were the volunteers of the year. He has committed that he is going to be in there January.
Quinn: That is awesome.
Brian: Hell yeah!
Quinn: That is awesome. On the other side of this, what do you do specifically when you get overwhelmed by everything? What's your go-to? Some people, it's a walk in the park; some people, it's ice cream; some people, it's exercise.
Jay Scott: Yeah. Mine is either go to sleep or go for a run.
Brian: I choose the former!
Brian: God, running sucks.
Jay Scott: You know, my first choice is run, but if it's really, really bad, I go to sleep.
Quinn: That's impressive.
Jay Scott: And try to sleep it off.
Brian: Jay, how do you consume the news?
Jay Scott: You know, almost all online or on the radio, but I find myself more and more getting news off of Twitter because I feel like it updates faster and I don't have patience to wait.
Quinn: Yeah, you are-
Jay Scott: Just [crosstalk 01:04:36] my pal, Quinn.
Quinn: Yeah, don't do that kids. Don't do that.
Brian: Jay, if you could Amazon Prime one book to the Donald Trump, what would it be?
Jay Scott: Wow.
Quinn: Now, we've gotten everything from comic books to color books to the Constitution, and everything in between. Our listeners, we have an Amazon wishlist with all of these listed, and our listeners go there and they buy them and they get sent straight to the White House.
Jay Scott: I actually would do "Chicken Soup for the Soul."
Quinn: Ah, nice throw back!
Brian: Remember those? Wow, yeah.
Quinn: There's a million of them now.
Brian: A bajillion of them!
Jay Scott: Yeah, but the original's the best.
Quinn: Mm-hmm (affirmative).
Brian: I love it. We'll put it on the list.
Quinn: I love that. That's definitely on the list.
Jay Scott: I love that book and I'm going to tell you a quick story about that book.
Jay Scott: We have a house that we're fixing up that we don't live in. The contractor was working there and I knew I wasn't going to be able to see him for a while, so I hid a check inside that book. When he finished the job, I said, "I left the check there and it's on page 200 of 'Chicken Soup for the Soul.'" He said, "Oh, my mother got that book when she had cancer."
Jay Scott: When he found it, the check wasn't there. I was like, "I know I left it there." I had two copies of in the bookshelf.
Quinn: That's pretty amazing.
Jay Scott: He thought I was a cruel [crosstalk 01:05:57] but-
Quinn: Perfect, right, right.
Brian: Here you're trying to do this really nice thing and it looks like you're an ass. Ah, that's good.
Quinn: I love it, man. All right Jay, last question. Like I said, everybody is connected to cancer in some way. We've got plenty of survivors among our listeners, maybe some current patients, people who've lost somebody dear to them. I know I have, a lot of folks have. Maybe some with kids with these cancers. What sort of message do you have for them? Sort of a closing statement.
Jay Scott: Make the most of each day and take it one day at a time and just to have hope. You can find hope in everything. And if you have hope, you got it all.
Quinn: I love it, I love it.
Jay Scott: Sorry, that's three things.
Quinn: Nope, that's fine. You just smashed right through the rules.
Quinn: I love it. Thank you, thank you for that. Where can our listeners follow you and Alex's Lemonade Stand online?
Jay Scott: Most of our handles are @AlexsLemonade if you want the Alex's Lemonade stuff.
Brian: Is it just A-L-E-X-S?
Quinn: Mm-hmm (affirmative).
Jay Scott: Yeah, Lemonade.
Quinn: Yeah, that's how you spell Alex's.
Brian: Well, if I was writing it, I would write A-L-E-X-apostrophe-S, right?
Quinn: Yeah, but there's no-
Brian: Which you can't have that, so I was just clarifying, Quinn, with our guest.
Quinn: Okay. Why don't you let our guest finish?
Brian: Thank you, Jay.
Jay Scott: Brian, I appreciate you because some people do put the apostrophe in it.
Brian: I just assumed. I'm just trying to be as clear as possible.
Jay Scott: Don't be bullied.
Brian: I like this guy, Quinn.
Quinn: That's a different conversation.
Brian: I like this Jay we have here.
Jay Scott: So @AlexsLemonade or we're on Instagram, Twitter. If you want to follow me, it's @LemonadeJay.
Quinn: Okay. Awesome, awesome.
Jay Scott: There's no apostrophe in that either.
Quinn: Perfect, great.
Brian: Well, now I think you're coming at me, Jay.
Quinn: Ugh, it's hard being you, champ.
Quinn: Jay Scott. Man, we cannot thank you enough for your time today and obviously, quite obviously, all that you and your wife and your whole organization do. We will continue to support it in every way that we can.
Jay Scott: Thank you guys! I'm a listener for life.
Brian: Thank you so much.
Quinn: Careful about that.
Brian: That's really awesome.
Quinn: Look forward to our next jog.
Jay Scott: Or at least until next week.
Quinn: Yeah, right?
Brian: Mm-hmm (affirmative).
Jay Scott: Yes, I look forward to our next jog also.
Quinn: It's going to be great. I've got a whole new route for us.
Jay Scott: And maybe Brian can come.
Brian: I will not!
Jay Scott: Okay.
Quinn: All right Jay, we'll talk to you soon man. Thank you!
Brian: Thank you Jay, so much.
Jay Scott: All right guys. Thank you.
Quinn: All right, thanks. Bye.
Jay Scott: Bye.
Quinn: Thanks to our incredible guest today and thanks to all of you for tuning in. We hope this episode has made your commute or awesome work out or dish washing or fucking dog walking late at night that much more pleasant. As a reminder, please subscribe to our free email newsletter at ImportantNotImportant.com. It is all the news most vital to our survival as a species.
Brian: And you can follow us all over the internet. You can find us on Twitter @ImportantNotImp.
Quinn: Ugh, just ...
Brian: So weird. Also on Facebook and Instagram @ImportantNotImportant. Pinterest and Tumblr, the same thing. Check us out, follow us, share us, like us, you know the deal.
Brian: Please subscribe to our show wherever you listen to things like this. And i you're really fucking awesome, rate us on Apple Podcasts. Keep the lights on. Thanks.
Brian: And you can find the show notes from today right in your little podcast player and at our website, ImportantNotImportant.com.
Quinn: Thanks to the very awesome Tim Blane for our jamming music, to all of you for listening, and finally, most importantly, to our moms for making us. Have a great day.
Brian: Thanks guys!