Episode 26: I’m a Liver, Not a Fighter
Cedar, who was named after a tree, has achieved a lot in her almost-decade of being alive—she has a podcast, she’s sort of a Do-It-Yourself queen, an accomplished video game champion (thanks to Covid), and she likes a lot of, you know, normal kid stuff—not including getting a liver transplant at the age of five.
Cedar has something called Progressive Familial Intrahepatic Cholestasis, otherwise known as PFIC 2. This devastating genetic disorder affects 1 in 50,000 to 1 in 100,000 live births and, if untreated, can be fatal by the age of twenty. Visit pfic.org for more information.
This episode is brought to you by deuter USA, Gnarly Nutrition, Allez Outdoor, First Ascent Coffee, and presented by Patagonia.
Music by: Kakurenbo and Chad Crouch. Additional music is licensed by Music Bed. A HUGE thank you to Chad Crouch for creating absolute magic, and to Peter Darmi for mixing this episode. Additional sound effects from zapsplat.com.
Cover photo by Kika MacFarlane.
Catch up on podcast (pod-Kath?) updates and general life things: @inheadlights
This podcast is sponsored by BetterHelp. Because therapy is for everyone.
FLC is public media which means we’re supported by listeners like you. Donate or become a patron.
EPISODE TRANSCRIPT:
(KATHY KARLO): This podcast is presented by Patagonia. Not bound by convention, Patagonia’s in business to save our home planet.
- We get support from First Ascent Coffee. What if you could have the perfect cup outdoors and didn’t have to settle for grocery store instant? With their commitment to keep jobs within a rural community, they source and roast beans, brew up a big batch, and freeze-dry it all under one roof in Crested Butte, CO.
Use promo-code “climbinglove” and we will know that you are supporting us in that way, and get 20% off handcrafted instant coffee and whole bean subscription. That’s “climbinglove” at firstascentcoffee.com, good through March 2022. First Ascent connects you with all the hands who bring you coffee, from seed to cup.
- This podcast is sponsored by deuter, one of the leading backpack brands that will help you hit the trails with confidence and comfort, but most importantly–your snacks.
deuter has a history of first ascents and alpine roots. Their head of product development even climbed Everest once, in jeans (hashtag not fake news.) deuter is known for fit, comfort, and ventilation. Founded in 1898, deuter believes in good fitting backpacks, so you can focus on way cooler things like puppies, pocket bacon, and gettin’ sendy, whether at the crag or in the alpine.
(FEMALE VOICE): Today we’re going to talk about “allez”. “Allez” means “come on!” in a way, or to encourage. Ok! We are done with the simple and normal uses of “allez”, now let’s cut to the chase:
(KATHY KARLO): Allez Outdoor Personal Care products are made by climbers for those who love the outdoors. Their rich and repairing ingredients for their skincare collection are inspired by desert landscapes, and their simple and recyclable packaging makes them eco-sustainable. Allez commits to protecting the open spaces that we love by partnering with the Access Fund and 1% for the Planet. That’s Allez Outdoor: “A-L-L-E-Z”). Allez Outdoor—made by climbers, for those who love the outdoors.
– This podcast gets support from Gnarly Nutrition, one of the leading protein supplements that tastes “whey” better than they need to, because they use quality natural ingredients. So, whether you’re a working mom who runs circles around your kids on weekends or an unprofessional climber trying to send that 5.13 in the gym, Gnarly Nutrition has all of your recovery needs.
The only question you need to ask yourself is: Are you a sucker for anything that tastes like chocolate ice cream? (Yeah, me neither.) Gnarly Nutrition is designed to enhance your progress—and taste like a milkshake, without all the crap.
(CEDAR VENTURA): Ummm. I just turned nine!
(KK): Like, just just?
(CV): September twenty-second.
(KK): What’s your favorite thing about podcasting?
(CV): My favorite part: we have a challenge at the end. I like reading the challenge to them. It’s an animal challenge—
(frogs croaking)
(CV): —like, go outside by a creek and build a little amphibian home.
We also do a jewelry shop. For now, we’re selling bracelets—handmade, by us. But we’re eventually gonna sell soaps, necklaces—and our title is: “Cedar and Oak’s Jewelry Shop”—‘cause we’re both named after a tree.
(KK): Wow. Did you know you were raising such an entrepreneur? Are you aware of this?
(DARIO VENTURA): Yeah. You know, she’s probably born that way. Probably forced her into it by brainwashing [her] from a young age.
(KK): Hey—welcome back to season four. This is For the Love of Climbing, and that was Cedar, who, as the story goes, was named after a tree. And she doesn’t just have a podcast; Cedar is a hashtag independent woman of the twenty-first century.
She’s only nine, but she’s achieved a lot in her almost-decade of being alive—she has a podcast, she’s sort of a Do-It-Yourself queen with a very promising future in business. She’s a rock climber, an accomplished video game champion (thanks to Covid), and she likes a lot of, you know, normal kid stuff.
(CV): I like being outside and in the wild and in nature, ‘cause I just like wandering around in the woods and seeing what cool things I can find. Like, there’s a lot of Black-eyed Susans!
(KK): Who doesn’t love Black-eyed Susans? Cedar’s growing up in the Gorge, and she’s healthy and strong and excited about a lot of things in her life. But she wasn’t always healthy and strong. Cedar has something called Progressive Familial Intrahepatic Cholestasis, otherwise known as PFIC. In Cedar’s own words, it’s—
(CV): A rare liver disease that a lotta kids have. Not a lot, but like—
(DV): Not a lot.
(KK): What’s a lot? What’s not a lot?
(CV): Like…it’s kinda like a little special gift.
(KK): I like that! What do you mean, a “special gift”?
(CV): Like, very few kids have it. So, that’s really cool, and it’s really cool that I’m one of them. It’s not all in the same country. It’s all in different parts of the world.
(KK): Speaking of different parts of the world, we didn’t have quite enough time to meet up with Cedar’s mom, Emily. But Emily’s awesome and she helped make this episode better by providing more information about this rare genetic disease.
(EMILY VENTURA): Hello, my name is Emily Ventura and I have the privilege of being Cedar’s mom.
Hey, Cedar. It’s Mom. It’s super cool to hear that you’re on a podcast, and it’s crazy how much you’ve grown up. There’s a million things that I’d want the world to know about you. You’ve been through so much in your young life: you’ve learned to speak up for yourself, ask questions, take charge of what’s happening to you and your body—and that’s an incredible skill.
But really, what I’d want the world to know about you—about Cedar—is how thoughtful, kind, and creative you are. You think of others way before yourself, and you’d help anyone in need. You put a lot of thought behind those things, and I’m so proud that I get to call you my daughter. I love you very much, and you’re my hero.
(KK): We’re back with ten new episodes of life told through a climbing lens. This episode is made possible by friends at deuter USA, Allez Outdoor, Gnarly Nutrition, First Ascent Coffee, and presented by Patagonia. This is episode twenty-six.
(DV): Well, ladies first.
(CV): So, I’m nine and my name is Cedar and I’m named after a tree. And I’m in the Gorge! And I was born in 2011; my birthday’s September twenty-second.
(KK): That’s right. You’re a Virgo.
(DV): Ooh, good one.
(KK): Yeah.
(laughs)
(DV): Well, it’s hard to top Cedar. Well, I’m Cedar’s dad. My name is Dario Ventura and I also live in the Gorge. And yeah, I spend a lotta time with Cedar being her dad. I don’t really like to say nice things to Cedar in front of her face. No!—that’s not true. It’s pretty easy being Cedar’s dad—especially from her early childhood. It was such a struggle, as a parent, to now that she’s healthy and grown up and—
(CV): ‘Cause I used to cry a lot.
(DV): (laughs)
She used to cry a lot. Now, she cries if I pick on her too much. But—no, I mean, now it’s like, it’s almost like reaping the benefits of childhood. And she’s still a child, but it seems so easy and it’s just totally different. You know, it’s like—after you go through what she’s been through, it’s—it’s pretty easy.
(CV): And we like to play basketball together. And um, he likes to pick on me.
(DV): Yeah, for sure.
(CV): (laughs)
(DV): Keep you humble.
(KK): You’re listening to For the Love of Climbing Podcast. This is not a climbing podcast. Well, sorta. This is a funny, sad, and somewhat uncomfortable podcast about choosing vulnerability and talking openly about our pain. This podcast is presented by Dirtbag Climbers. Here’s the show.
(sound of pill bottle opening)
(CV): So, they like—I mean, I dunno what’s in them, but—
(Dario and Cedar both laugh)
(DV): Can you pronounce any?
(BOTH): Hydro—
(CV): —Cortisone.
(DV): Cortisone. Oh—you did that better than me! Oh, this is a hard one: Hydro—
(CV): —phenalate
(DV): Mydro—
(laughs)
Mydro—co—Mydro—phenalate. That’s not right.
(CV): Mycophenolate.
(DV): And Tacrolimus.
(CV): Tacrolimus.
(DV): I remember that one. This one is a steroid. She’s supposed to be off steroids, but still on those. And then, these two are to lower your immune system—
(CV): Yeah—
(DV): —and they’re very time-sensitive. Like, she can’t miss them or go over time.
(CV): —but the pills just keep my liver healthy! That’s what—that’s what pills are supposed to do—keep you healthy.
(BOTH): (laugh)
(KK): And that’s exactly what these pills are doing. Cedar will be on immunosuppressive medications for the rest of her life, but she’s got that shit dialed.
(CV): I used to be so bad at taking pills—like, I would have to take ‘em with applesauce. And then, once I learned, I was like, “I don’t wanna take this one slowly!” and then, I learned more and I was like, “I’m gonna take all five of these at one at a time.”
(DV): Yeah, the pill thing was definitely a hurdle.
(laughs)
Ice cream, applesauce, marshmallows. I put pills in—you name it, to get you to…
(laughs again)
(CV): But also, there was one gross pill and sometimes, the ingredients dissolve in my mouth and like, “Ew, ew!”
(DV): Yeah, you had a lot of liquid medicines for a—
(CV): —and—
(DV): —really long time and they were—
(CV): —but then—
(DV): —disgusting.
(CV): I just take them as fast as I can. Like, shove it down my throat. I’m like, “Finally I got that one done!”
(DV): She had this multi-vitamin that was like midnight orange. And it would stain anything it touched. It was like—
(CV): Yeah, anything!
(DV): —but she loved the taste of it! And it tasted like—
(CV): I loved it! I loved it.
(DV): —I tasted it ‘cause I was like, “I gotta try this!” But I tasted like straight dirt, and she loved it.
(CV): I loved it! I loved it.
(DV): (laughs)
(KK): So, the “gorge” that we keep referring to is the Red River Gorge, and even if you’ve never been to east-central Kentucky, any climber worth their salt knows that it’s one of climbing’s premier sport climbing destinations. And—the trad is pretty good, too. The Red is actually a designated Geological Area and a National Natural Landmark, and the Gorge itself is a canyon system with a huge volume of routes spread throughout Daniel Boone National Forest.
The Red is managed by U.S. Forest Service, and thanks to organizations like the Red River Gorge Climber's Coalition, Muir Valley, and the Graining Fork Nature Preserve, climbing is allowed within its borders. Pretty cool. And of course, we can’t forget the epicenter of climbing—Miguel’s Pizza.
And that’s where Dario and Cedar live now. That’s where Cedar has grown up her whole life—with her mom Emily and climbing just a stone’s throw from her backyard.
(DV): Actually, when she was really young, I had a crib at the crag that I would put her in and just leave her. I know you don’t remember this—but when I’d bolt walls, I brought a crib to the wall and I’d leave you in the crib. And you’d usually just cry. But then I put you—once you fell asleep, she would sleep ’cause she’d be crying for so long. But that time, you know, she wasn’t diagnosed for a long time, so she was just a really whiny baby.
(baby crying)
Besides the crying, the biggest thing was that she started itching—
(CV): A lot.
(DV): —like, a lot. You know, at first, you’re like, “Oh, dry skin,”—you put lotion on it. You’re like, “Oh, that’s not working.” You know, and it just kinda got worse and we’d go into the doctor’s and no one was really sure what was going on-kinda-thing. You know? Because it’s not like the first test that comes through anyone’s mind, you know?
So, then the itching got really bad to where we started duct-taping gloves onto her. And then, you know, I mean—she’d wake up in the morning with a bloody face and just pretty much just tearing her skin off. And then, she started showing some jaundice. So, she had yellowing of the eyes and her skin. The skin wasn’t obvious at first because I’m Portuguese, so it’s like—dark skin and, I don’t know, it just didn’t seem that crazy, right? You know?
(KK): Did you know that the average size for a five-month-old baby is about twenty-five inches? That means Cedar was roughly 45 times as long as an Aspirin, or twice as long as a hot dog. That’s 350 times as wide as a strand of spaghetti, or one-ten-thousandth as long as The Las Vegas Strip.
What we’re trying to say is that Cedar was tiny! Babies are really, really, really small. And when Cedar was five months old, she was only 0.000 000 002 times as long as The Distance from the Earth to the Moon.
And that distance was also about as long as Dario and Emily’s frustrations would grow. At five months, Cedar’s symptoms started showing up. It began with developing bruises on her back, and they didn’t go away. Swiftly taken to the ED, Cedar was going into full-blown liver failure—and nobody knew why. Six weeks after visiting a specialist in Cincinnati, they finally had an answer. Genetic testing diagnosed Cedar with PFIC 2.
(DV): That was almost a victory alone, you know? Just because once you can say, “Oh, this is what my child has.” and then there’s a whole different road that you can follow down. It was the uncertainty to that point that was really the hardest.
(KK): Back then, online information about PFIC was scarce, but there’s been a steady progress since then, especially thanks to Emily who now co-leads PFIC Advocacy Network. Not knowing was always the scary part—having to live in that weird, in-between no man’s land for an uncertain amount of time. But becoming more knowledgeable about this genetic disorder was the first step.
Basically, what PFIC does to the human body is, it complicates bile production. Bile is the fluid that your liver makes in order to digest fats. Bile formation carries toxins out of the body, so the lack of proper flow leads to waste buildup. That’s what causes the itching and jaundice. And treatment is really complicated.
All of this was while Emily and Dario were just learning how to settle into the role of parenthood for the first time. The vitamin supplements were one part, but multiple surgeries are often required. So, doctors basically gave Cedar a side belly button in order to repurpose a part of the intestine to help siphon waste, and cut a chunk out of her intestine.
(DV): They put the drain in her stomach and then she had like, a bag—a bile bag that collected—
(CV): And I had to change it.
(DV): —which, that’s where Mom and Dad get lots of good victory points there, ’cause we had to change it—four times? Five times a day? And it was a pretty big bag! You would not believe how much bile the human body produces. It’s insane!
(CV): I know, like every other hour, we’d have to empty it. It’s like, “Wow! That’s so much bile!”
(DV): Yeah, and it was like the color of orange Gatorade. It was like—and it smelled awful!
(CV): It was yellow! It was yellow, it was yellow.
(DV): It got to a point where I’d have to wake up in the middle of the night and drain it because it would fill the bag up like a balloon, and then, once the seal that we put on her side couldn’t take it anymore, it would just explode. So then, she would wake up in the middle of the night just covered in bile in bed, and usually—it was in bed with us.
(laughs)
So, then there’d be bile—I mean, everything was covered in bile. And that would happen literally once a week. Or if she was sleeping, she would roll over—and then the pressure of all the fluid would just shoot out the side.
(CV): I remember draining it, changing it, watching it fill up.
(DV): Yep.
(CV): But then, we did it so much that I could do it by myself.
(DV): Yeah, towards the end of it, she was—‘cause you had to custom-cut a hole out in this bag every time. It was really not state-of-the-art technology we’re talking about here.
(laughs)
But you had to cut the hole out of this thing and you had to use these scissors and get it just right because, obviously, every stoma is different on every kid. So, they can’t make a standard size. But by the end, you know, she was draining it herself. She’d go into the bathroom—like, she’d go pee, and then she would just drain her bile into the toilet.
(KK): The shitty thing (no pun intended here, for all intents and purposes) was that a liver transplant could help, meaning that Cedar would lose the bag. But the trade-off was that she would have to have a liver transplant, which is a scary thing at any age.
But Cedar’s also not just any kid, and she’s had to be adaptable and brave and stare scary things in the face since she was quite literally a baby. She’s been around hospitals and doctors so much that she’s basically a pro. I mean, things like getting her blood drawn doesn’t even phase her.
(CV): Like, it doesn’t even hurt!
(KK): Pro or not, a lot of weird stuff was happening inside of Cedar’s body. By the time she was five, Cedar’s liver was becoming more and more stressed, and her symptoms were only getting worse. As the doctors, Emily, and Dario all carefully watched her labs to monitor the levels of her liver enzymes, a transplant would become more likely.
Her vitamin levels had dropped chronically low. Her spleen enlarged, trapping platelets and other blood cells, and she was growing more and more fatigued during her day-to-day. There were so many variables for receiving a new liver, which turned it all into a number’s game.
Sometimes, her numbers would be low—bringing her body down, but not actually causing liver failure. And other times, Emily and Dario would go to a different hospital and get a completely different answer. But the one, unchangeable thing was that Cedar’s health was a ticking time bomb and she needed to get on that transplant list.
(DV): But, the whole medical industry—you walk into an emergency room and you’re like, “Hey, my child has PFIC 2,” and they just—they don’t know what you’re talking about. You know, and Emily, being a nurse, really knew how to take on the system and be like, “No, listen: This is her situation. Here’s the doctor. Call this doctor.” You know? And it took a while to figure that whole process out and realize that that’s what needed to be done.
They have like, a wall in the transplant ward—
(CV): Of all the patients—
(DV): —and it’s not many bears—
(CV): —but—
(DV): —if you think about it.
(CV): It’s like four rows of them.
(DV): Yeah, I’d say it’s probably—fifty bears. But once you have a successful liver transplant, you get to make a bear and put it up on the wall. And it was kinda like, this big deal because through the whole process where these bears stop was kinda where this little cafeteria was.
So, you always walk by this wall of bears every day. You know, it’s kinda like this weird, like, “Oh, are we gonna get a bear on the wall?” You know, it was just like—
(trails off)
Yeah, and then we just watched your numbers, I guess, forever. And then all a sudden, it was kinda obvious her numbers were starting to trend down and she started getting jaundice again. And then, that was the weirdest part because then, once you’re like, “Ok, your child needs a transplant,”—it becomes this presentation, you know? Like, you got the packet. And it was like, we had to take CPR classes. I mean, you go down the whole gauntlet. I mean, this is a big deal.
That was probably the scariest time of the whole thing—is was when she went onto the list. Because the list is a window, right? They kinda make it seem like almost a reality show in the weirdest—you know, it’s just like, they lay it out like, “Here’s your window,”—you know?
And everything has grades and you, as a patient—Cedar as a patient, gets a grade. And then her grade pushes her up the list-kinda-thing. But it’s a grade that spikes and also falls back down on the back end. So, you have a window of having a need for the liver, but then, once you’re past that, that also drops off the backside and you start dropping back down the line. So, it’s like, when you think that as a parent, you’re like, “What?”
When she was on the list, she started to come, almost I think, to the backside of being very favorable to kinda being less favorable. I think it was that day that he was like, “Well, this is kinda the day.”
(KK): Cedar gets a transplant—after we come back.
- We’re working with Better Help to connect you to licensed therapists. They’ll match you with the perfect therapist for a fraction of the cost of traditional therapy. You know who goes to therapy? Prince Harry. Emma Stone. Jenny Slate. Kesha. Therapy is beautiful—everyone should go to therapy. Go to betterhelp.com/climbing to sign up and receive 10% off your first month. It helps support this show, and it helps support you.
- Even though we say it in different ways, our message is the same: Climbing is our home.
(FEMALE VOICE): Community is rock solid.
(NON-GENDERED VOICE): People I like, feel connected to.
(FEMALE VOICE): The support and love.
(MALE VOICE): Human connection—that’s what we’re all striving for.
(FEMALE VOICE): That’s what climbing is to me—it’s magic.
(KK): Whether we do it to find connection within ourselves, with each other, with the land, or for the food (ok, it’s kind of always about the food)—climbing shapes us as individuals and a collective. These are the voices that make up a community; the ones that call us back home.
(FEMALE VOICE): What has climbing taught you?
(FEMALE VOICE): Uhh—
(MALE VOICE): Climbing’s taught me—
(FEMALE VOICE): Climbing has taught me—
(MALE VOICE): —taught me to be patient, ‘cause you know, great things take time.
(FEMALE VOICE): I wake up, and I think about climbing—
(MALE VOICE): What’s the real reason that you climb?
(FEMALE VOICE): —I go to sleep thinking about climbing.
(FEMALE VOICE): The crag food.
(FEMALE VOICE): —all of the food.
(KK): Each climber’s voice is a point of contact into the broader community. Connect with more stories and check out Patagonia’s climbing apparel that’s built to move and built to last at Patagonia.com/climbing.
(CV): My mom and me were out climbing and we’re like—we just rushed to the hospital.
(DV): Yeah, I was climbing—
(CV): So, you’re never probably going to be prepared for what day it’s going to be. So, you’re never going to be like, “Oh, this. I need this—“
(DV): Yeah, that was so weird. Yeah, any time you get a phone call you’re gonna be like,
(gasping dramatically)
(CV): Yeah.
(both laugh)
(DV): I was at the Lode, and you were at Chocolate Factory, maybe?
(KK): That’s just usually how it works; first, you get a phone call—
(iPhone ringtone)
—“Oh hey, your new liver is in!”—and you just sorta drop everything that you’re doing because time is of the essence. And there’s no real way to prepare or know when it’s gonna happen.
(CV): He almost fainted!
(DV): Well, it wasn’t that. It was just that, we put her on an operating table to get ready to go in, and then you kinda can say your last, “Hey,” you know, “Have a good time,” ‘cause you can’t go with ‘em. And I have her hand and then they give her the medicine and her knock her out.
But she starts freaking out because she’s losing consciousness and losing touch with us and is like, grasping for us. And it was just like, it was this image of her being like,
(gasping dramatically)
You know? And then just being like, “GUNK!”
(laughs)
And I was just like, “Oh, no!” You know, it was almost like watching somebody drown, to put it in—
(CV): Yeah.
(DV): —perspective. It was just like, “Oh my god, you’re drowning in your own mind here!”
(both laugh)
(CV): Yeah. And we were like, “Ugh! What are we here for? Like, what’s the purpose? Why are we doing this?” It just felt really weird and we’re like, “What’s happening?” But then, I—I have some pictures of me when I was asleep. Like, my face was just kinda yellow. And I was like, “Ugh,”
One thing I remember right after I was done with my surgery: I remember taking my stitches out. And I had this twenty-minute fight about who was gonna take my stitches out and finally decided the nurses. ‘Cause it hurt so badly—
(DV): Cedar has become a pro of—and we just know it now, but pretty much, she’s gotten to the point at the hospital where she tells the nurse where to stick her in the arm. She probably knows more about the hospital process than some new nurses do, I swear to god. She’s just so—or terms. I mean, she has it so dialed.
(KK): It’s a lot more casual to talk about Cedar’s surgery now, but in the moment, so many things were happening—all at once. And yet, waiting for a new liver felt like an eternity. Despite how hard the decision was to make, Emily, Dario, and Cedar’s doctors all knew that they’d made the right one.
And when the time did come, there were definitely complications—Cedar’s blood pressure spiking high during surgery being one of them. But family and friends and climbers alike all rallied behind them.
(DV): We needed it at that time. We were worn out. I mean, your surgery was like—it took all night. I forget what the nurse’s—there’s a name for the nurse that her job is—she’s like the liaison from the operating room to the parents. Forget there’s an actual name for that person, but, that woman—
(CV): Mom?
(DV): —deserves all the credit in the world because—I felt so sorry for her. ‘Cause she has to come in and be like, “Hey, your child’s heart’s having trouble staying beating right now. We’re doing what we can to get it going.” And you’re just—and then, she just like leaves the room. You’re like, “What?!” And you know, she has to do that so much. I just can’t. Like, after that whole process, I was like, “God, what a saint.”
It was a huge outpouring of endless, “Can I do this? This?”—you know? Everything that didn’t revolve around us being in that hospital was pretty much taken care of by friends, family, and just the support, you know.
Plenty of people just drove up and we left the hospital and we went and had a beer and just sat down and talked or had a meal together. And you know, how much it means when you’ve been in a hospital for weeks—to get out and just sit down and go,
(exhales)
It was priceless at that time. And I didn’t doubt that people wouldn’t be there for us. I mean, we’re such a small community here, and there are so many people that have been part of this community—forever. Even when I—as a kid, if I look at photos of my birthday parties as a kid, it wasn’t like, me and a buncha kids. It was me and a buncha rock climbers that happened to be at Miguel’s.
You know, so, it was like any family event that we’ve ever had growing up in our lifestyle at Miguel’s—it was really just like, some family and all the climbers that were at Miguel’s or that you were friends with or happened to be in town for the fall or the spring, you know? So, when something like this happened, I never had any doubt in that. I think I have a lot of faith in people.
I mean, I wanna say at that time, like twenty thousand dollars was raised in like, three days. You know, it was just like, overwhelming. You know? It was like, “Holy crap.” I’m always hesitant, sometimes weird about people that wanna help me, but that was the one point in my life I was like, “Ok. Let’s—thank you.” I mean, you can ask any of our friends. I hate to ask for help. But I should—I should ask for more help.
But then, that’s the one thing—when it comes to health—I was actually thinking about it last night, like, how climbers are generally healthy people. And so, being in the hospital, and just how you don’t realize how being healthy is like, it’s like a staple. It’s—nothing else really matters.
And I’m not a health nut, you know? Like, I drink and I have a good time! But we take for granted how being capable is a blessing in itself. Like, take everything else out of it. When you spend months and see how much suffering somebody can go through and survive, you’re just like, “God! We should be really thankful.”
(laughs)
And I think that’s just the human condition. I don’t think we realize how fortunate we are to be healthy until we’re not healthy. I mean, my grandparents, you know, always said that if you wake up healthy and happy, you know—that’s it. You have everything you need, right? And you lose track of that. But stuff like that really then brings it full spectrum. You start—you start, well—you just start looking at things that annoy you in life and you start weighing them and going, “Eh. Eh!”
And like, Cedar—I mean, you know! Like, being on a floor like where she is and you’re there for a month and just seeing all the pain—like, thirty rooms of just, these lives. And there were kids plenty around her that were not going down the good track. You know? And you would see them come in and then you would see them leave, and it wouldn’t be happy. And just being like, “God—every day, this is constantly happening—and these are people just in pain and suffering,”—and obviously, everyone’s gonna lose touch with that, right?
But I think it’s something we maybe should remind ourselves of more. Because, I mean, as climbers, we’re like—we’re so caught up in our like, you know, being healthy. Doing outdoors stuff—and that’s awesome, but—
(trails off)
But, you know, you’re the good ending. Right? Yeah. You’re a funny kid. And it probably—maybe you would’ve grown—maybe woulda been like, a real, whiny, spoiled little nine-year-old. But it humbled you and made you appreciate things. Maybe it was for the best.
(both laugh)
(KK): Life has changed a lot for Cedar, to say the least. She’s healthy and nine and has a podcast and is growing up. And even though she and Emily and Dario all still have struggles ahead of them, they’re not living in that weird ambiguity of “What do we do?” They have a plan, they have resources, and most importantly—they have each other.
(DV): She used to be on ten pills—she used to be on a whole pile of pills.
(CV): Now I’m four!
(DV): She’s still on immune suppressants. So, there’s a whole gauntlet of problems we have to deal with. Hence, Coronavirus really not affecting us, ‘cause we’ve been wearing masks before it was cool!
(laughs)
(CV): It’s like, before Corona: “Why are you wearing a mask?”
Like, “Yeah, but here’s the thing: I’m high-risk and all this.” And then—
—any season where there’s not Corona is a good season.
(all laugh)
Yeah.
(DV): Yeah, that’s true. But the thing is, is Corona was a blessing, too, in a weird way for us, because we got quarantined with climbing right out our front yard. So, we spent three months just daddy-daughter climbing.
(CV): Actually, we barely climbed.
(DV): Yeah, we didn’t climb as much as we’d like.
(CV): Yeah. Hm!
(DV): Covid.
(both laugh)
(DV): Her mom has PFIC.org, which is getting more people aware that this disease exists. I mean, if you searched it, literally nothing came up. So, it just kinda didn’t exist. So, her mom’s hope and obviously my hope is that the medical field is, you know—‘cause eventually, Cedar will need another transplant at some point—
(CV): What?!
(DV): Yeah, you know that.
(CV): Ummm. I did knot know that.
(DV): You didn’t know that? Did I just spill the beans?
(CV): Yeah, you did.
(DV): Oh. Well, eventually, you’ll probably need another liver transplant. And then, our hope’s that the more this is talked about, the more it gets out there and then, at the end, will, maybe help her and her future. But I would say my mindset is that this is now and let’s just enjoy this.
(CV): So, my liver was bad. And then, my liver started doing well. I got used to taking care of it and I feel stronger than I was when I was a baby—‘cause I know how to handle it now. I’ve got my pills dialed down. I know how to change my bile. I know if my labs are good or not, or if I have to go to the hospital or not. Now, I know what to do, when to do it, and why I have to do it.
(KK): What do you think that you would tell any kid going through what you went through? Do you have any advice?
(CV): Actually, that’s a kind-of-easy-kinda-hard question, because I’ve actually told other kids like me who’ve been through this. And now I kinda understand ‘cause there are other kids that are struggling, like, going through what I’m going through.
So, we say, “Oh, this is what I have and this is what I’ve been through. But, at the end: Ummm. Try as hard as I can, but all that matters is—if I fall, it only matters if I fall trying. I learned that from my mom and dad.
(DV): That’s true. ‘Cause we both fall a lot, and we try really hard.
(both laugh)
(DAZY CHAIN): I’ve been on the road
Out here with the squad
Everybody trying go
Yeah the party jumping off
Ay we putting on a show
Trying to catch a vibe
We do this every time like
Nana nana nana
This is where I wanna stay (nanana)
I could do this every day (nanana)
It don’t matter what they say (nanana)
I’m like
Nana nana nana
So you
Better know, we ain’t never going home
Ain’t never going home
You
Better know, we ain’t never going home
Ain’t never going home
(KK): Emily Ventura is the Founder and Executive Director of PFIC Network. This 501(c)(3)’s mission is to improve the lives of patients and families worldwide as they work towards the goal of better understanding the needs of the community. Find out more information by visiting pfic.org.
(CV): Ummm—so, my podcast is called “Creature Adventures with Cedar—with Cedar and Ayla”. Something like that! “Creature Adventures with Cedar and Ayla”. And we basically talk about a different animal every episode. So, the first episode we did, we talked about owls.
So, we tell the names and like, “Did you know this and this and this?” and then, we each say a fun fact. And also, we say a challenge at the end. Just like, “Go outside and do this,”—and then, we also did one about amphibians. And it was so cool!
(KK): Even though I still have no idea what I’m doing—things are happening. And if you’d like to help out and support us, check out patreon.com where you can sponsor us for as little as one cup of bodega coffee. It really helps keep this podcast going, and for the record—we love bodega coffee. Special shout out to Peter Darmi because he makes this thing sound good.
- You’re listening to For the Love of Climbing Podcast. A huge thank you to deuter, one of the leading backpack brands that will help you hit the trails with confidence and comfort. And a big thank you to Gnarly Nutrition for supporting this podcast and the messages that we share. Gnarly Nutrition supports a community of vulnerability and equality—and tastes like a milkshake, without all the crap. A big shout out to Allez Outdoor for supporting the Access Fund and 1% for the Planet. Allez Outdoor Personal Care products are made by climbers for those who love the outdoors. And thanks to Patagonia. Not bound by convention, Patagonia is in business to save our home planet.
Support companies who support this podcast—we couldn’t do it without them. If you liked what you heard, you can leave a review on iTunes or give us a like—like all good things, you can find us on the internet. Until next time.