The Camino Cafe
The Camino Cafe
119 - The Neal Family - Walking the Camino: A Family's Journey of Faith, Healing, and Resilience
Follow the Neal Family on IG for their upcoming Camino walk starting September 1st
https://www.instagram.com/neals4fibro/
Video about their upcoming walk:
https://youtu.be/CtVm6sh3QVo?si=AjbyE3Yb4_6Pc0BB
Neal Family's Blog
https://thewaytoacure.wordpress.com/
To Support Fibro Fighters in finding a cure:
https://secure.givelively.org/donate/fibrofighters-foundation-inc/neals4fibro?ref=1c062159-e55f-4a1c-87cd-e570d2bfa17a
What happens when a family’s pilgrimage transforms into a profound journey of healing and resilience following a life-altering diagnosis? Join us as we meet the Neal family: daughter Ella, mom Denise, and dad Dennis.
Based in Colorado, the Neal family shares their compelling story of walking the Camino de Santiago amidst Ella's courageous battle with fibrolamellar cancer. Discover how Denise initially embarked on this pilgrimage to navigate her life as an empty nester. Soon after, they walked as a couple, strengthening their bond and resolve.
Listen to their profound experiences as they later walked as a family following Ella's diagnosis. Faith and community played pivotal roles in their spiritual growth as they walked together. They found solace, faith, and a renewed sense of purpose, which became crucial in supporting Ella through her medical journey. From carrying stones to honor other cancer fighters to organizing fundraisers for fibrolamellar cancer research, their journey is marked by deep connections and heartfelt traditions. Ella’s poignant stories of finding strength in the simplicity of each day and the joy of spending cherished moments with family are sure to touch your heart.
Our episode has uplifting moments that showcase the joy and camaraderie within this family and found along the Camino trail. From the heartwarming tale of this mother-daughter duo who crochet hats for hospital patients to the humorous adventures during their walks, the Neal family's story is one of hope, resilience, and community. Tune in to learn how you can support their ongoing efforts and follow their inspiring journey on social media as they prepare for their next walk on the Camino Portuguese.
Connect with Leigh:
Camino News Update
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The Camino Cafe's intro and outro song with thanks to fellow Pilgrim, Jackson Maloney. Original Song - "Finnis Terre" - written and performed by Jackson Maloney - Singer, Musician, and Songwriter. Connect with Jackson: https://open.spotify.com/artist/3fdQsSqq9pDSwKcWlnBHKR
Hey Pilgrims, welcome to the Camino Cafe podcast. I'm Leigh Brennan, your host. Today. You are about to meet the Neal family. They're based out of Colorado, denise and Dennis, the parents and their adult daughter, ella. Denise and Dennis were near retirement and just beginning to live a life as empty nesters, with both of their kids off on their own. Ella was busy studying and enjoying college life when suddenly their worlds were interrupted with devastating news. The diagnosis was one that no parent wants to hear, and certainly not a diagnosis that a young college student wants. The diagnosis was of a really rare form of cancer called fibrolamellar. It is an extremely rare form of cancer. In fact, it only strikes one in five million people.
Speaker 3:Walking the Camino has brought so many gifts to this family, and it has also brought them a way to give back, even while they're going through this incredibly difficult challenge. In fact, they start walking again on the Camino Portuguese this September 1st to raise awareness in the hopes of finding a cure. You can follow along with their walk on Instagram at neils45ro. The link is in the show notes.
Speaker 3:Hey, I encourage you to listen all the way to the end of this interview to hear Ella reading a powerful essay from her blog about her journey. That will be followed with a short talk by Ella, dennis and Denise, with just a bit more information about their upcoming walk and how we can help. After we recorded this interview, ella walked the Frances, but she is still in a battle to beat this cancer and is currently trying new medical protocols. The way Ella, dennis and Denise are dealing with all of this inspires me and so many others. Now let's drop into the discussion, as Denise starts us out by sharing how she first decided to walk a Camino. Dennis and Ella will join the conversation just a bit later.
Speaker 2:I have a friend of mine who's from Austria and she would tell me about walking these pilgrimages in Austria. She's Catholic and I didn't really know you know what she meant by that. And then she invited me over her house one night to watch the Way and she told me the movie was about the Camino de Santiago, which I had no clue. So that was my first introduction to it and I did not go and watch the movie and I actually didn't watch the movie until after I came home from walking and it just kind of sat with me for a few years and I kind of forgot about it. And then, in 2019, I really felt this urge to go. My kids are away from college or at college and I was, and Dennis was still working and I was still kind of finding myself in this new season of my life. And then I just decided to go and then within three months I was out there.
Speaker 2:Where did you start? I started in San San John, I walked to Burgos and then I didn't. I only had 27 days because I had no, I really didn't know what I was doing. Looking back on it, I'm kind of flabbergasted by it, but I really didn't know what I was doing, and so then I took the train to Lyon and then walked the rest of the way because I had that limited time, and then after COVID and it reopened, then I went back and walked the full route.
Speaker 3:So you'll come home from that and you know were there, so you'd become an empty nester, basically, right, so Ella's away at school. And what is your son's name? My son's name is Eric Eric. So Eric and Ella are away at school. It's just the two of you at home right now. You decide to go walk the Camino. So when you got back home, were you experiencing any kind of changes in your life? You know like what? What kind of happened between that time and, I guess, not long before COVID broke out?
Speaker 2:I felt that the Camino helped me to learn to believe in myself again and that I could do something hard and challenging and that it just helped me kind of set aside quiet time. I had deep spiritual reflection on the Camino and deep connections with people that I still keep in touch with and it I just fell in love with pilgrimage as a way of travel and experiencing the world.
Speaker 3:Do you think at that point that you'd walk again?
Speaker 2:I was disappointed that I wasn't able to complete the whole route, and so, yes, I wanted to go back and walk the Meseta, and I originally thought about just going back and walking what I missed, but then COVID happened, and so that was put on hold. And then, dennis, you know, I convinced Tim to walk with me and we decided to do the Portuguese, but I didn't want him to do the same thing I had done, and so we chose a different route. So then, finally, back in 2022, I was able to go back and walk the full, francis.
Speaker 3:And now Dennis joins in on the conversation. What was the life plan at this point, 2019,? Your wife goes off and walks this Camino. She finds herself and starts gaining confidence as this new empty nester. What were you going through?
Speaker 1:Right. So I'm still working, looking at the finish line not sure exactly where you know I was going to pull the trigger but and excited about Denise. She comes back from the Camino, just on fire. You know, her spirit is just alive and she can't stop talking about it. And so I'm thinking, well gosh, I, well gosh, I gotta do this. You know, if it's that good, yeah, so we fit that into a vacation. Um, at the point of my career, I was able to take some extra time off, and so then Denise and I did the Portuguese, and then, of course, I became a believer and uh, and I was just as rabid as her about, you know, doing another Camino as soon as possible, right.
Speaker 1:And then, shortly after that, where our daughter, ella, was diagnosed and and then that kind of changed everything for us in terms of accelerating the retirement, being there for her and trying to figure out what path we were going to take as a family.
Speaker 3:And now you get to meet Ella, ella. So your mom goes off and does this, and then your dad follows up, like what are you thinking You're away at school and what were your impressions of what they were doing?
Speaker 4:At first I was well, I was so proud of mom for doing this amazing thing. I mean, who just goes to a country and walks across it? You know, in a decision that it was, it was very inspiring. You know, she drank the kool-aid. She's camino, camino. And you know, by the time that dad went, you know he started saying the same things and I was like, oh okay, you know there's got to be something to this and by the time that I decided to go, I was, you know, knee deep in treatment, and I when you.
Speaker 4:When you're diagnosed with a, with a, a very critical illness, it's hard, especially at a young age. It's hard to feel in control of your life or to feel like you can do hard things, like my mom said. And so the Camino, like it was for her, was another. It was a chance for me to do something hard and feel like I could accomplish something. So, and it just became a family thing from there we all drank the kool-aid and we'll never go back yeah and now I'm Camino, camino so.
Speaker 3:So take us back out of your. You're at school and just doing all the normal college stuff. Uh, you, you majored in speech therapy. You're a speech therapist now yeah, just the.
Speaker 4:So I'm teaching kids silly sounds and how to make friends.
Speaker 3:Oh, that's sweet. Okay, so you're in school and all of a sudden you started experiencing some abdominal pain. What was going on?
Speaker 4:Yeah, I was working at a coffee shop during that time and I remember one day waking up with serious abdominal pain and I thought maybe I slept wrong, maybe I was sore, I didn't know. So I went to work, I was telling some coworkers about it and at this coffee shop we were all very close so they were like, hey, you should go, you should go get this checked out. Um, you know, it sounds pretty serious. So I go to the urgent care that day and they, uh, I think they also said you know, we're not equipped for this, you should go to the hospital. So I'm like, oh, this is kind of a little worse than I thought. So we go to the hospital, I call the parents up and they thought it was your gallbladder at first.
Speaker 4:Yeah. But then they, they got some scans back and they found a lesion in my liver. They didn't know where it was from. They estimated that it was benign, since I was young and otherwise healthy looking, and they said come back in three months. So yeah we. We ended up finding a specialist at that point who had seen one other fibro patient.
Speaker 3:Yeah, and you know we should say that the type of cancer that you're diagnosed with only affects one out of 5 million people. Yet there's there was a doctor right there near you in Denver. Is that where the doctor is based?
Speaker 4:Yeah, well, and even to make that even more kind of astronomical is, I don't think we even reached out to her directly. I think my case file just got passed along through a chain of doctors and she's a liver specialist.
Speaker 2:I mean, she is a liver specialist, so yeah but it found her and I'm eternally blessed.
Speaker 4:It was was seriously incredible, but yeah, she knew exactly what to do and we got things taken care of from there.
Speaker 3:So what happens at this point, ella? Do you you continue with school or start your treatments right away? Well Cause, this is during COVID, we should add. So on top of COVID, you get this diagnosis.
Speaker 4:Yes yeah, it was a time in my life that was very hard, uh, and I think many people who are, um diagnosed with a kind of critical illness can, um, kind, I guess, empathize.
Speaker 4:Is that your whole worldview, the way you see yourself and the way you see the world and the way you think the world works, kind of just breaks overnight and all of a sudden you wake up in this new reality where you're trying to figure out who you are and how life's going to work from now on, and with COVID on top, it was like, oh my gosh, the world's falling apart. So I'm very grateful to have my parents be so supportive during that time. I moved back in with them for almost like six months. Yes, that way I could get through a lot of my healing. I had a pretty intensive surgery and just kind of find myself a little bit more. So I was very grateful for that. But it was humbling. You know, as a, as a grad, as, like a college grad, you don't want to go back and live with your parents that that wasn't the plan.
Speaker 3:Right like you were supposed to be coming on and starting your job, and yeah, but we turned into the experience of a lifetime because we started, you know, watching Korean rom-coms every Wednesday.
Speaker 4:You know, we still do. Yeah, we really grew as a family unit and you know they're not just my parents, you know they're my close friends and I trust them with anything.
Speaker 3:Okay, so how are you feeling today? What's going on today for you, Ella, as far as your health?
Speaker 4:My health is in a much better place, I'd say. You know, there's ups and downs with treatment, and so we're learning to ride those, ride those out.
Speaker 3:Let's go back to now. You've had your first surgery. You're back at home with your parents trying to heal. How does the Camino come up as? Hey, maybe we're all going to go walk. Take me back to that conversation.
Speaker 2:Well, we she came back home and then she finished school and then started living on her own again, and that's when Dennis and I decided to walk the second half or of the Francis.
Speaker 2:I wanted to go back and walk the whole thing, and he walked the first half of it with me, and it was during that time I think it was 20 2022 where we kind of turned it into a fundraiser for fibro fighters, because they helped, they were so instrumental in helping Ella that we wanted to give back, and so we felt maybe the Camino would be a way of giving back. So what we did was we reached out to friends and family and said hey, you know, would you sponsor us for you know, a donation for the amount that we walk? And so we did that. That was how we first started it, and then the next year, because always people would say to me oh, I'd love to walk the Camino, but I would never go alone. So then I started thinking, because you have a lot of time to think on the Camino maybe we should bring some people with us, and that's how it kind of came about.
Speaker 2:And Ella we specifically chose a time when Ella was off of school and work that, um, she could come with us, and then we brought a small group of people, so that's kind of how it and who suggested this to Ella?
Speaker 3:was it you, denise? That you like was this over a. Korean rom-com that hey we think we should go walk. Well.
Speaker 4:I knew they were going, and know they'd been talking about it for so long that I and I'd obviously done the research and I think we watched a few Camino movies and documentaries at that point and of course I was like, oh yeah, I'm going to have to do this at some point.
Speaker 2:Phil's Camino was very impactful. We watched that as a family.
Speaker 3:Yes, we watched that as a family. Phil is a wonderful inspiration. Denise and Dennis, when you go and walk this Camino, let's talk about what that's like for you as a couple, knowing that your daughter is facing this huge challenge. How did that inform that Camino and what kinds of things did you find were helpful from that walk?
Speaker 1:Well, that's really a great question. So, as Ella explained right, when you know cancer comes into the conversation and all of a sudden it's not somebody else, it's you or your family, your loved one. It changes your world. That's an understatement. When it changes your world, that's an understatement. But, as Ella was saying, it also changes your identity right.
Speaker 1:Now we're part of this cancer community and we are faced with the questions of how are we going to move forward individually, but as a husband, wife and as a family, and so all of these things start coming into play. The Camino, I think, was instrumental for Denise and I to help process it, because it took us away from our natural or normal environment, let's say at home, and it put us in a different environment that allowed us to focus much more on the important things in life, to have gratitude for the time that we have had so far and the time that we currently have the fact that, you know, ella was. We were able to catch Ella's diagnosis earlier than most patients that are afflicted with fibromyalgia, and so you know it gave her a bit of a head start on getting treatment and whatnot All of these good things right. The gratitude came forward and you know it brought us closer to our faith and our purpose. It kind of realigned our purpose.
Speaker 1:You know, here we were. You know looking at retirement, you know all right, how many vacations are we going to go on? We're going to have our toes in the sand, drinking margaritas every day and numbing ourselves versus okay now. Here's a bigger selves versus. Okay, now here's a bigger, a higher purpose right when we can serve others in the way that Christ has served us, and, and not just our daughter, but all of those who are afflicted for a rare disease that doesn't get the funding that, let's say, a breast cancer or a lung cancer, gets right, and so and I would say, denise gets much of the credit for this, because of her, she's a prayer warrior and and it was a lot of the ideas that came through her prayers, that, um, where you know the whole thing about fundraising and getting engaged with fiber fighters kind of came about.
Speaker 2:Well, we had done fundraising in the past and it kind of, you know, it took a long time marinating in my, my, my mind.
Speaker 3:But yeah, so you had some training and fundraising, and so that just naturally came up for you then well, and that was Dennis.
Speaker 2:Dennis ran a golf tournament for years, and we would, as a family, we'd involve both of our children in picking a charity, and so we did that for a number of years.
Speaker 3:So but I you know that was mostly Dennis organizing that, and so let's talk a little bit about you know how it did impact the faith and you know was there some shaking of faith and yeah, I mean it's, it's.
Speaker 2:You hear about these things happening to other people and but it happened to us and it did take a while of you know, of processing and realizing that. You know, I rely a lot on my faith in in the Lord and it has been my rock and and um an anchor throughout this experience and it's brought us closer together. We have a really good church family. They've been very supportive of us and have always been there. Just from the very moment of you know Ella's diagnosis. They've been there for us.
Speaker 3:Denise, dennis and Ella have been helping out in just a multitude of ways, one including the tradition of carrying stones for others.
Speaker 2:I first learned about the origin or the tradition of carrying the stones on my first Camino. I walked with two Irish ladies and they were carrying a stone and they explained to me what it meant, and that was my first introduction. And then then, when Dennis and I walked, of course we carried stones and I don't remember really how it came about, but we decided that we would ask the other families in the Fiberland Miller community if they would like us to carry a stone for them, and so we did that. So we would each pick us. We would, people would give us their requests and then Dennis and I would pick up each a couple of stones in the morning and then we would kind of separate a little, walk a little bit apart and actually pray over the stones and think about that person and we wrote their name on it and then we would take a photo and send it to the family. And that was actually very impactful for us as well as well as the families, and so we just kind of carried on that tradition.
Speaker 2:We we did that last year with our group, camino, and we'll do it again this year too.
Speaker 3:Tell us a little bit about that impact. What did it feel like for the two of you to to pray over these and to have this opportunity to replace those along the Camino de Santiago?
Speaker 2:well, for me, um, some of the people, the patients it usually it was the mother who requested, so it kind of went out, my mama's heart went out to their mama's heart, right For their child, and there were times where I actually didn't know the situation with their child and if their child was, you know, still alive and fighting this disease or if they had passed on, and so that that really kind of changed my approach and how I prayed over the stones and it was really meaningful because their life was significant, even if you know, when they're in, and they meant their families, they just meant um so much to me in my heart just just really just embrace the, the hurt and the pain that they felt as well.
Speaker 3:Dennis, would you add anything to that?
Speaker 1:No, I would agree with that.
Speaker 1:Kind of goes back to what I was saying earlier, where you now are part of a community and it tied me into that community, spiritually deeply, with people that I didn't know personally, but they shared the same affliction and they're on the same journey of pain and suffering and whatnot. And again it drew me closer, you know, to our creator, god, and it just gives me goosebumps just even remembering you. You know placing those stones, praying for those individuals and and you know it goes back to again purpose. You know things that are really, really important, that you know. That's what the Camino does right.
Speaker 3:It draws most important things in life, rather than these silly distractions that we are stuck with all day long, yeah, but I really admire how you not only joined this community that none of you wanted to originally adjoin, uh, and found yourself in this, but it seems to me that three, the three of you have become advocates, you've become leaders in this community. You haven't just joined it, you, you're not only trying to work through this as a family unit, as an individual, ella, but also working on behalf of the entire organization and hoping to find a cure and supporting the other folks that are going through this.
Speaker 4:I think for me, um, as a patient, it gives me a sense of control again, because when your life is very out of control and you don't feel like you know, you feel like you're at the mercy of your own body or whatever cosmic force is happening around you. But you know, knowing that I'm able to help my fellow fibro fighters and give back in some way through my research and donating my, my information to help further the cause, it gives me a sense of purpose, like my dad was saying.
Speaker 3:So now, by the time that you decide that you are going to join them on this walk right so you walk the Portuguese together you were still going through some pretty intense treatment. I was reading one of your blog posts and just seeing the medicine there getting ready to come walk the Camino, and you have medicine that needs to be refrigerated. You're taking shots you know, I think, how tired I get on a Camino and I'm not dealing with any of that. So talk to us about how you felt at the start of how am I going to do this Cause I could imagine that wasn't even easy at home, and now, all of a sudden, you're talking about taking all of this out on the road, not just somewhere around Denver, but all the way in Spain.
Speaker 4:Yeah, it was. It was almost like, you know, there's certain times in my cancer journey where you just kind of have to buckle yourself in and do it, whether you like it or not, and it's easier sometimes to just not think about how scared you are or even ask the questions can I even do this? I said, you know, the time was approaching, closer and closer, and we were doing training and things. I should have done more, to be honest, but you know, I didn't allow myself to think can I do this? I just went and took it day by day, which I think was very helpful for me, and of course I was. You know, there were things that we had to really be careful of. Like we had the refrigerated, you know, immune therapy medication I was bringing with me, which was caused quite a few breakdowns, but we got there. But yeah it, you know we got through it and it was part of the. We came up with Camino fast pass Camino light, you know. So there was a level of self-forgiveness.
Speaker 4:If I was not able to walk a day I would take a taxi and, you know, rest as much as I could, but for the most part I walked almost every single day and it felt really good to walk. I felt my body and my brain ramping up and, you know, I felt more alive than I had for many moments being at home. You know, I'm sure anybody being on the Camino would say the same. So, like you're living in the moment, I wouldn't get, you know, as much outdoor time at home.
Speaker 4:And just being with people in the beautiful countryside and having moments to kind of peel away and be with my own thoughts as well was very, you know, mind altering for me, because there's a state of meditation that you're on in the Camino you wake up and the only thing you have to do is walk that day and it, you know it, it allowed me to kind of drop some of the really big life issues that I had or the ways that I was feeling. And, you know, I, the only thing I had to do that day was walk and the only thing I had to worry about is that. And it was wonderful and I got to just, you know, really prioritize in my mind. You know what I, what was really important and at the end of the day, it turned out being, you know, quality time with my family and giving back.
Speaker 2:She did great, she was always like the leader in the pack.
Speaker 1:Oh yeah, Her youth was her strength, for sure because, she was taking chemo pills every day and then taking injections every other week, and it would knock her down, you know, for a little bit, but she'd get back up and she'd lead the group the next day, you know. So it was impressive.
Speaker 4:And then we'd get into town and I'd have a big old gin and tonic have a big old gin and tonic.
Speaker 3:I loved your description in a blog post about the giant. You said a big fish bowl of gin and tonic. I loved it. That was so funny, so I I would imagine you were quite the inspiration for the folks that you were walking with. You know like it's hard to complain walking alongside you, knowing that you're taking chemotherapy pills, you're taking injections, you're dealing with all this in addition to it's no walk in the park, to walk any stage of the Camino. So I would imagine you inspired quite a few of the people that were walking alongside you, the people that were in your group, the people that you met and the people at home who were following this journey. Did you hear from any of them?
Speaker 4:Well, that's really sweet of you to say. I think I've heard from a few other fiber fighters that they were very proud of me and you know that it was just such an amazing experience and that they'd love to go at some point. So it's definitely very humbling to you know, have people see me doing this great thing. We also happened to meet somebody on the Camino who was from Australia and he was. I think he was an art teacher, but he did portraits of meaningful people that he met along the trail and I think he's been I don't know. I don't know how long he's been doing it, but I don't, we, you know you bump into people.
Speaker 2:And so we met him and his wife. They were very fun and friendly and I I just love meeting people, and he shared with us one day this art journal that he was keeping on the Camino, and we recognized some of the, the portraits that he had drawn of the people that you know, we, we, were kind of bumping into as you do on the Camino.
Speaker 4:And then he asked Ella if he could, um, do one of her, and so she, she agreed yeah, and he was such, a, such a sweetheart that he actually sent us um, he sent us the drawing afterwards and I have a huge drawing of my own face hanging in my apartment it's beautiful.
Speaker 2:It was beautiful and it actually arrived when she was in the hospital for a major surgery. So it was a real gift from the camino that we got back home and you know it, just the beautiful expression of the, you know the beauty of generosity, that that you see on the camino and experience yeah, it was not really my own strength on the Camino that brought me through.
Speaker 4:It was really everyone else around me and the love that I was feeling and the support.
Speaker 3:Ella is such a gifted writer. She's been keeping a blog about this journey. I asked her if she could just talk a little bit more about the essay that she reads later in the interview. Talk a little bit more about the essay that she reads later in the interview. When you had this cancer diagnosis that you kind of just wanted to go under, this security blanket and have your parents, you know, turn on the lights and make this kind of go away.
Speaker 3:And you also mentioned that you were finding yourself almost feeling like you were playing this game of poker, that you didn't really think you could win, so you just felt, maybe, that you should just fold, just fold every challenge that was coming up every round. Could you speak to those two things first and explain to us a little bit more about what that felt like?
Speaker 4:Yeah, absolutely, I'm a very visual person, so coming up with you know ways to represent how I'm feeling it just kind of helps me out.
Speaker 4:But, you know, when you're diagnosed with any sort of, you know, critical illness, like cancer, you kind of just want to hide away from the world. It's almost like you're a little kid, scared of the dark again. You know you, you'd hide under the blankets and pretend that nothing's out there. And, you know, sometimes it's too scary to even, you know, kind of peek, peek out from under the blankets and I, you know, especially as a kid, I was very scared of the dark and I, would, you know, hide under my blankets and I had to cry and cry and cry until the parents, would you know, turn on the lights for me, and that's kind of how it feels. You feel powerless, like a child again, you know, and if you, I relied so heavily on my parents during that time and it was wonderful that I was able to receive that help and come out of the blanket and discover this new sense of courage again and kind of grow up a little bit or find your new self, I guess.
Speaker 3:Well, you referred to in the blog post. You talked about that. You gained your sense of agency again.
Speaker 4:Well, I think it's. It's a journey. I think there's not. There's not a black and white to okay, now I feel better. I think it's more of a. It's a spectrum.
Speaker 4:So when you're first diagnosed, you know you're dealing with all these questions of you know. Is there a God? Why would he let this happen to me? And you know what's going on in my body, why is my body fighting itself?
Speaker 4:And it's hard to feel in control of anything when you don't feel in control of the world, let alone your own body. And so, bringing it back to the poker example, it's like you know why, even try, I'm not in control of anything. I've recently, and going back during the initial first couple of years of my diagnosis, I was very nihilistic and cynical and it was easier to be negative and to just kind of give up on everything. And so the Camino was another way for me to take back control of my life and be okay with uncertainty and not knowing what's going to happen the next day. And I feel like I've been taking that mindset more so into my identity and how I approach the world is I'm not sure exactly what's going to happen or what what's out there or what's going on in my body, but it's all about how I respond to it in the moment and finding meaning in what's meaningful to me well said.
Speaker 3:Well said, ella, I think, the mindset and taking each day. Do you recall a moment, ella, when you were walking, where it felt pivotal, where you kind of recognized like oh, something's happening?
Speaker 4:yeah, I think I also carried rocks. Um, for some of my fellow fibro fighters it's kind of a double-edged sword being in a small cancer community. It's beautiful because you get to know everybody, but it's also hard because you get to know everybody, and I got to know three. You know wonderful young women throughout the last two years at that point and they were very close to me we talk on, you know FaceTime one of us, and they were very close to me, we talk on, you know, facetime. One of us had a discord and you know they unfortunately passed away that year and so it came back to that.
Speaker 4:You know, I'm out of control, I don't know what's going to happen, and so I wanted to put their names on rocks and carry them with me in order to not only remember them but to kind of realize that this is way more outside of me than I originally realized. And so I think you know I found and I'm sure everyone's told you this, you know you wait for the perfect spot and it's like your heart tells you okay, this is it. So I found this, this green pasture, and there were you know were horses, and I think this is outside of um. Was it Ponte Vedra, or okay, I think so.
Speaker 4:But uh, it was beautiful and so I placed them down and I didn't think. I was like, okay, whatever the rock thing is, it's all symbolic. But then I started like bawling, you know. It's like, okay, there's something to this and it made me realize I have the opportunity to be a leader, whether it kind of feels like it or not, and so I have an opportunity to make my experience meaningful if I rise to it, and it was a really big moment for me, so I hope I step into those shoes.
Speaker 3:It sounds like you are, like you're well in those shoes. Thank you, dennis and Denise, what was it like watching Ella walk? You've already walked some Camino, so you guys knew that this is challenging, no matter your situation, and now you're seeing your daughter rise above the additional challenges that cancer has brought to her life. What did that feel like as parents of of a child who is now an emerging adult?
Speaker 2:I was so proud of her yeah, she did, she did great, like you know we were saying she was. She was out there in the, the lead of the group, and just just so proud of her and her um, just walking and her strength and talking with the other pilgrims and just um, even on the down days where she'd, she'd get back up again and and do it again, just just proud well, that was the beautiful thing of the Camino.
Speaker 4:I had such raw and vulnerable conversations with the group that we met that I really got to know them as people. And you know we talk a lot about suffering as a family and how to get through suffering and you know it's always the why, why, me kind of mentality. And on the Camino you know everyone's going through struggle and we got to talk about that and it really hit home that everyone's hurting in their own way. So it was good to get band together and to share that kind of beauty and suffering. It was really transformative.
Speaker 3:Dennis, what about you? What did it feel like to see your daughter take on this Camino?
Speaker 1:Yeah, special, special time. That was just a very moving experience for me. That was my third Camino and it was our second fundraiser for fibro fighters and so and I was the only guy in the group there were ladies, and so I had a special role. I was typically playing caboose and kind of, you know, hurting the, the ladies and making you know, just kind of keeping an eye on the group and making sure that that there was somebody who needed assistance or needed a break, that you know that they got support and encouragement. And I also took a role of making sure that if somebody needed to be talked to, you know somebody was needed a break, needed a break, just put it that way I could recognize that and pull the person aside and or talk to the other people and say, hey, this person needs a break, type thing.
Speaker 1:Um, but I will say I, I and Ellen and I have of course had some special talks during that walk as well, but, um, she didn't need the kind of support that I thought she would need. You know I was going to be all over her and taking care of her and, just you know, lifting her up, you know, every day. But no, she was lifting other people up and some of the other ladies there that I wound up spending a little more time compared to Ella. So that tells you how proud we were of her and the inspiration she was to everyone.
Speaker 3:Thanks, dan. You know, I think, being a parent and getting you know, I've been in this situation where I've been able to walk with my dad and I've been able to walk with my daughter. It's quite a special experience to be able to do that and I wonder, dennis, would you share with us maybe a touching moment or a moment you had with Ella, where you're having that dad and daughter talk?
Speaker 1:Was there any moment that you can recall that that felt like wow, I'm really glad we're having this yeah, yeah, there were some times where, uh, we were in the tail of the group and we let the group move ahead, and then Ella and I would take uh pictures, uh, um, either a selfie or, uh, I would take one of her because I had been on the trail before, I knew some areas where there were going to be a Roman bridge, right, where the light would shine through in the water and the willows, and so, yeah, and I cherish those pictures today, those moments where I would say, sweetheart, there's a lovely little spot here and you're going to look great. And, of course, she spent many years doing some modeling, so she knew exactly how to make it look great.
Speaker 3:I cherish those Were there, any moments where you felt like there were special moments for mom and daughter.
Speaker 2:There's one that comes to mind that, um, when Dennis was talking about photographs, and it was the day that we arrived in Ponte de Lima and it was a hot day and Ella, I remember that day, walked on her own a little bit because she was carrying the stones for the other patients, so, um, we all came into town and we were hungry and there was a restaurant that was open and they served pizza and we um all sat down in there and had like it was the best pizza I've ever had in my life.
Speaker 2:You know, we had some sangrias and I took so I think somebody took this photo of Ella and I look at it and I think Ella is really beautiful and it's. I think that this photo is my favorite photo of Ella because she just has this inner glow and she's just sitting there. She doesn't have any makeup on like everybody else. You know, that's how it is out there and you could just see this inner, inner glow and I just looked at it and I could just see that the inner beauty that was just emanating from her. It's just like it makes me emotional just talking about it and it's just the most beautiful, beautiful photo and I was just so proud of her and walking with us and doing you know so well. Given what she was going through, it just yeah.
Speaker 1:Was that before she had the gin and tonic?
Speaker 2:Yeah, it was.
Speaker 4:They were big. Sangrias they were big.
Speaker 1:Oh, that's right, they were pitchers. Sangria, sangria that day.
Speaker 3:Oh, I can imagine, denise, when all of this began happening. I mean, you guys are going through COVID, then Ella becomes ill with this cancer and you know you might have thought this. I don't think you probably were thinking at that moment of hearing this diagnosis that you'd all three be walking a Camino coming up soon, yet you did, yeah, yeah, hmm. Well.
Speaker 2:I mean, what is it?
Speaker 3:about the three of you that you could do that Cause. That had to take tremendous strength.
Speaker 2:Well, it was about two years after her diagnosis and I, we have just really grown and meshed together a lot stronger, and that is, you know, I don't want to say it's the gift of cancer, but it's.
Speaker 4:We used it as the opportunity to really grow our relationship.
Speaker 2:Yes, and we're very, very tight and close and it was just a wonderful experience to be out there with her and I would find myself just saying just stop and just soak it in and just be present and enjoy this time with with Ella and with Dennis and the other people in our group. There were other cancer survivors that walked with us last year in that group too.
Speaker 3:I think yeah too this wasn't a one time thing, well.
Speaker 4:I got super jealous of my mom. After, you know, doing my first Camino, I was like I want to do the Francis and so for the first two weeks on my own, and then I'm meeting my dad, kind of in the middle and he'll be walking with me the rest of the way and we're meeting mom at the end. So, we're going to be finishing together and it's going to be short enough time.
Speaker 2:Well, they're on the Francis, so Dennis hasn't walked the second half from Burgos, so he'll complete that section. I'm going to be on the Primitivo, so then I'll be walking down South and then I'm going to meet them, and then we're going to walk in the last three days together and then we're going to walk in the last three days together and then we're going back to september with the group as our third fibro fighters.
Speaker 3:Uh guided fundraiser what are you looking forward to the most about walking this?
Speaker 4:that's a good question, I think, because my first camino was with my family and as a part of a group. I didn't get the authentic experience, as some would say, walking on your own and, you know, truly living up to the statement the Camino provides. So I'll be doing the full Albergues, you know first two weeks on my own, trying to meet, you know, pilgrims and have an authentic Camino experience on my own. So definitely going to be a wonderful growing opportunity.
Speaker 1:So Dennis, tell us a little bit about Fibro Fighters Two agencies are the Fibro LaMela Cancer Foundation and that's a larger body that deals with research and very large grants, cancer research institutes and whatnot, and it's dealing with synergies across other cancers and large research projects. What the second one is foundation is the fibro fighters foundation and that's fibro short for the fibro low Miller. Fibfightersorg was started by a gentleman named Tom Stockwell who lost his son to the battle against FibroloMiller about seven years ago, and Tom has dedicated his life to being a patient advocate organization for those that are diagnosed. Again, it's a very, very rare cancer. It's in the liver but it's not necessarily treated like a liver cancer. It is unique in itself. So what happens typically is as someone is diagnosed or somebody is ill. It can take a long period of time for a patient to be diagnosed correctly because it is so rare.
Speaker 1:So Fibro Fighters helps patients and caregivers to connect with the right doctors and hospitals that are more familiar with this cancer and the necessary treatments. Fibrofighters provides all these services at no cost to the patient and the caregivers. They coordinate DNA, blood and tumor cell testing for the patient. That helps more clearly define a treatment plan, a more efficacious treatment plan than they might receive, let's say, by a standard cancer response and, again, this is virtually free to the patient.
Speaker 1:I think most importantly they they coordinate a tumor board review every week, and this tumor board is a number of radiologists, surgeons and doctors who have the most experience in the world with fibromyalgia, and they meet via Zoom every week and they look at the information for these patients. So they'll look at scans, they'll look at their tests, they'll look at the various condition of the patient and then they'll make a recommendation for treatment either surgery, radiology, a different chemo plan that would be optimized for this particular individual, and then that decision then goes to the local doctor who is treating the patients. Now FibroFighters is serving patients in 27 countries, so now it's gone international and again they're a 501c3.
Speaker 1:So because we have been so blessed with Tom Stockwell and the primary doctor with fibro fighters His name is Dr Paul Kent we have been so blessed and we've watched them serve patients to extend their life and in many cases, like Ella's, get them to a point of no disease. No evidence of disease, we just feel compelled. No evidence of disease, we just feel compelled. We feel this is our purpose in helping to continue to promote fiber fighters and the good work that they're doing.
Speaker 4:We'd be lost without them, yeah.
Speaker 3:So what if somebody is listening and you've been moved by the effort that you guys are trying to do and helping find a cure and helping with research? Could they make a donation of some sort to this group?
Speaker 2:Sure, we have a link to fibro fighters on our blog that goes directly to them, so they could do that they. A little bit later, as we get closer, we're going to be doing some fundraising for a European patient who wants to walk with us. Oh, okay, and so they. If they connect with us through our blog, they'll be seeing that information as it comes out in the coming.
Speaker 3:Okay, so we'll have a link to your blog as well as fiber fighters, so that you can find all things. I think I was looking at the Fiber Fighters website and the gentleman who started it, I believe, was wearing one of the hats that you crocheted.
Speaker 4:Oh, yeah, yes, my mom and I are crocheters and knitters and it kind of became this whole thing. I started making little cat eared beanies and, yeah, kind of blew up a little bit in the community.
Speaker 2:So we'd wear them to the hospital and we'd, you know, post pictures of her and they'd say, oh, I love that hat.
Speaker 3:I want. I would imagine it brings a little bit of cheer into the this treatment room.
Speaker 4:When somebody's wearing one of your hats, oh yeah, well, and it feels good to keep my hands busy, and my mom and I we've been donating hats to the infusion center that we frequent as well. Now we're seeing more and more people wear them too.
Speaker 3:And does your group wear these when they walk?
Speaker 4:We're coming up with goodie bags though, okay, okay.
Speaker 1:So this walking it may not be the best description, because it's a thick knit beanie with little cat ears.
Speaker 2:I saw it.
Speaker 1:It folds, you know right over the brim and it's just so darn cute and cozy.
Speaker 3:And that's what I'm doing. It would be a definite signature look for your group. No one would miss you. That was for photos, at the very least. Before we wrapped up the conversation, I wanted to find out about some lighter moments that they experienced on the Camino.
Speaker 4:My favorite moment on our Camino together was, you know, having their captive audience and being able to ask them all the hard-hitting questions about life, because they're kind of my mentors and I got them captive on the trail well, that's pretty rare, isn't it?
Speaker 3:Ella? Right, you now come as this. You know, young adult now and you have your parents here and you guys, you know really, um, what a bonus to be able to spend this extra time together. And now you've got them on the trail and they have to answer whatever you might want to ask, I might imagine exactly what's the meaning of life.
Speaker 4:You know, when do I have to get a colonoscopy?
Speaker 3:I don't remember all the parent advice that you want, right, absolutely of course every camino has its has its stories.
Speaker 2:Um, I think ella had a wonderful experience at costa fernanda and at the end, and then we had the pool incident.
Speaker 3:Yeah, so okay, what happened at the pool?
Speaker 1:I mentioned our second camino and and I'm the only guy group of ladies very hot day we come into the casarial, we dump off all of our stuff and we are informed through the paperwork that this Casa Real has a pool. So we all get on our bathing suits. So I'm last to get outside to locate where this pool is, and I see the ladies are all there. We couldn't find it.
Speaker 1:Yeah well, we searched, they searched around, but they're all sitting, sitting around this body of water that's on an elevated platform. It's about six feet by 10 feet and it's about the laundry thing. It's about eight inches deep, and they put their feet in it, and so we're all thinking well, is that?
Speaker 2:it Is that the pool. That can't be the pool.
Speaker 1:Is this lost in translation maybe?
Speaker 2:Did you read this?
Speaker 1:wrong. No, there's definitely not a pool here. We looked everywhere. So we are all sitting there and we're hot, I mean. So we were desperate, so I even lay down I am horizontal in this cold water and the neighbor goes by a couple of times kind of eyeballing us, and then she finally realizes you know, there's something wrong with these people. She, she yells to us hey, that's not, the pool is over there. She points pool was behind a huge, huge hedges that were 25 foot tall. So anyways, we get over and sure enough, there's a legitimate pool. We all start laughing. But the whole time we were willing to compromise in this little laundry pool.
Speaker 3:You know anyways, we still laugh. And then what happened at Casa Fernanda?
Speaker 4:Oh gosh, I've heard stories of Casa Fernanda. I mean, everyone talks so highly of it and Fernanda herself was an incredible woman and she, she has the. You know, she knows exactly how to make you feel comfortable and at home. And so that dinner Well, actually from the moment that I stepped in there, the wine was flowing, there was food going and everyone you know from all over the world was just having a great time. And, um, after dinner was done, you know, we're a couple of glasses of wine in everyone's having a good time. And so they bring out this guitar and so they're like hey, who plays? Um, and some, uh, some. There was this wonderful guy from Chicago. He ends up playing the guitar and he's like but I don't sing, I need someone to sing, need someone to sing. And so I think I forget how, what happened, but all of a sudden I was plied with liquor and grappa and they're like here you go, go sing so we are you a singer?
Speaker 4:never professionally, but I did a lot of theater back in high school. I've always always a performance art person, so we did House of the rising sun and a whole bunch of beatles, elton john country road. A good time it was so much fun.
Speaker 2:Ella was there on her own, so the rest of the group was staying up just up the road at this little lovely winery area, and so I'm getting all these text messages and audio messages of ella. You know, here I am and she's sending me videos of her singing and having a great time and authentic, you know, kind of a Camino experience.
Speaker 4:So it was oh yeah, and then when he was done with the guitar, of course it was put in my hands and I couldn't put it down. They were like another one. It was a long night.
Speaker 1:State of way too late.
Speaker 3:Good training for the princess.
Speaker 2:Oh yeah, oh, yeah, yeah, good training for the princess, oh yeah, oh yeah, very good training and then you had your experience at the end too, in Santiago, right oh?
Speaker 4:yeah, it was a big party we came in on.
Speaker 2:Uh, I forget what it was a holiday, st John's, yeah but it was the festival where you there wasn't okay, where you jump over the fire.
Speaker 4:Yeah, there were bonfires and food and, uh, I got together with, uh, this one young gal I met on the on the trail and we jumped over the fires together and partied with.
Speaker 2:Everybody had lots of expensive sangria stayed out way too late, oh yeah yeah four in the morning we were, we were sleeping, oh yeah good thing you didn't have to walk the next day.
Speaker 4:Yeah, exactly we had to get on the train.
Speaker 3:That was almost as bad yeah, what a joy it is to talk to the three of you.
Speaker 4:My goodness yeah, thank you so much for your time it was fun.
Speaker 3:You're so very welcome. Well, I love how the three of you can be your own support group. You know for camino addicts that you've become, that the three of you can constantly talk about the camino and geek out about it. It's beautiful. I'm so glad, denise, that you found the camino when you did.
Speaker 3:It seems like it was right in time yes, and then, for the three of you to be able to experience this together and all the good that you're doing as a result of the challenge that Ellis had to face, and so hope that there is a cure for this and that you know you don't have to suffer anymore from any of this, and we pray that the Camino continues to bring you all that it's brought you, and more, over the next couple of years.
Speaker 2:Well, we love the Camino and it's a wonderful experience and I just encourage everyone to do it, whether they walk with us or not, but just to have that experience where life slows down. It really is a reset to our modern life.
Speaker 3:And now here's Ella reading from her blog post titled Finding Strength and Resilience.
Speaker 4:A great many things can happen while walking 150 miles, clearing rocks from my shoes more times than I could count, getting in deep talks with friends and strangers alike, seeing incessant warnings of pooping on the road, visits to Dr Blister, aka my dad, finding band-aid splints for my malformed toes, eating polpo, octopus and other vaguely odd-looking seafood. However, I did not expect self-discovery to be on this list. To be honest, I was not sure that I could even make it to Santiago, the ending point of the Camino. But the person who flew to Portugal was not the same person who came back. She had learned one incredibly valuable lesson that changed her outlook on life and gave her hope where she previously had none. The greatest lesson that I learned on the Camino was nothing of great intelligence or inspiration. It wasn't some epiphany, but rather a subtle realization of my own resilience and strength. You know, life can be challenging, if not completely intolerable. At times it can feel like trudging up a hill for five miles only to realize that there's nine more uphill miles to go and no toilet in sight. But when you get to the top of the hill and you see the beautiful view below you and you're overcome with a sense of self-accomplishment, your toilet break becomes a distant memory. Until the nine mile descent On the Camino, there are many challenges and even some physical mountains that I had to climb. Each helped me to realize that I'm a much stronger person than I thought I truly was.
Speaker 4:Once being diagnosed with the big C, I felt powerless and out of control within my own life and body. I felt useless and unable to rise to any challenge, no matter how small it was. If life was a game of poker, I was folding on every round without even looking at my cards because I thought I could never win in the first place. I often felt like a little child hiding under the blankets because they were scared of the dark, waiting for their parents to turn on the lights because they were too scared to leave the confines of their blanket sanctuary. Being in the blanket sanctuary is comforting, but you can't stay under the blankets too long because you run out of air. I started to feel suffocated by my own comfortable bubble, unable to change any of the problems that I had in my life because I was unwilling to face them. The Camino crept up on me and my blanket sanctuary and I needed to make a choice. Do I rise to the challenge dare to believe in myself or stay home. I thought I was not confident in my ability to walk 150, oh, though, I was not confident in my ability to walk 150 miles, let alone hold a comfortable conversation with anybody outside of my own family.
Speaker 4:I knew that this trip was a once in a lifetime opportunity that I needed to take, so I got out from under the blankets, tried not to second guess myself and went off for Portugal to start my journey. By the end of my first day, I realized just how quiet my wind was. There was no screaming anxiety or existential dread, only the satisfaction that I walked 13 miles and that I was enjoying a fish bowl sized gin and tonic for five euros. There's something about the Camino that strips you down to who you really are. You're going to be physically uncomfortable, sometimes socially vulnerable, in a desperate need of a shower at all times, but happier and more authentic with yourself and others than you would be anywhere else.
Speaker 4:The deep connections that I formed on the trail with each of my walking partners made me feel like it was okay to be vulnerable and real with others about who I was. I didn't have to act like the perfect cancer patient or the person who had it all together Each day. The Camino gave me the opportunity to accept the challenges of that day and to feel proud of each small accomplishment, whether it be walking 13 mile days back to back or having a heart-to-heart conversation with someone you've never met before. By the time I got home, my blanket sanctuary was dead. The challenges in my own life didn't feel insurmountable anymore. It was time to truly play the game and take a risk instead of folding. The Camino gave me my opportunity to take back my sense of agency over my own life and choose to accept challenges rather than waiting for them to be over. This is the fighting spirit that I want to take both to my treatment as well as my journey on finding purpose in life.
Speaker 3:And lastly, here's a little more information from Ella, dennis and Denise about their upcoming walk here in Spain in September and how you can help if you would like.
Speaker 4:I'm Ella.
Speaker 1:And I'm Dennis.
Speaker 4:And I'm a fibrolamellar carcinoma survivor and fighter since 2021. I've been through multiple different interventional surgeries chemos, the whole lot and I can say with full certainty I would not be here to work for everybody at FibroFighters and the help that they've given me and my family. They've helped us not only to hope for the future and to feel solid in balancing out my work and life and treatments and just being a young person in this time work and life and treatments and just being a young person in this time. They've also helped us to give back and to be inspired to be a bigger part of the bigger picture. Want to tell more?
Speaker 2:about that.
Speaker 1:What Ella's talking about is the Camino de Santiago. It's an ancient pilgrimage dating back to the 11th century. There are various trails across Europe that culminate in northern Spain and specifically the Cathedral in Santiago, spain. And once again, denise, my wife and I will be leading a group of pilgrims on a Camino journey in support of fibrofightersorg. Fibrofightersorg Fibro Fighters is a patient-centric 501c3 advocacy and education organization dedicated to helping patients and caregivers affected by fibrolamellar carcinoma. Your donation dollars will fund fibrolamellar specialists, and these specialists will coordinate various blood DNA and tumor testing for fibrolamellar patients. The goal is to find targeted cancer treatments for these rare disease patients. Further, fibro fighters will coordinate multidisciplinary tumor board reviews. Now these are regular meetings of professionals from various disciplines that will look at specific cases of the fibrolamellar patients and provide guidance on treatments and procedures. And further, fiber fighters will collaborate with groundbreaking research organizations using real-time data in coordination with local oncologists thank you so much for your time and, hopefully, your support for donation.
Speaker 4:if you want to learn more about our family and the kinds of journeys that we do throughout Spain, my mom can tell you a little bit more about how you can follow along on social media or hopefully go on your own journey or join us or donate.
Speaker 2:Most importantly, follow us on our Facebook group the Way to a Cure or our Instagram page Neos for Fibro.
Speaker 3:Well, that's it for today's show. A big thanks to Ella, Denise and Dennis for being on the show. Pilgrims, thanks for tuning in and listening. I hope to see everyone back here for our next episode. Please take care until then.