Episode 48: Guest Episode with our Parents

Today we are joined by our parents! You’ve heard them mentioned on the show time and again and today they get to tell the story from their perspective. We are so grateful for their love and support.

SHOW NOTES

Sources and Further Reading:

• You can reach out to us here with questions, feedback, or to share your story

• The phrase “have the best week available to you” originated on the wonderful podcast Pantsuit Politics

TRANSCRIPT

 Kayla 0:09

 You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.

 Ella 0:15

 And I'm Ella Beckett, social worker and cancer survivor.

 Kayla 0:20

 We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support. 

Ella 0:28

Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.  

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Ella 0:42

 Welcome back to the My Sister's Cancer podcast. This is your co-host Ella Beckett here, as always, with my sister Kayla Crum. But it's not just the two of us today. We are very excited to have our parents on the podcast. So you might have heard our guest episode with our husbands, and now we're so excited to welcome our parents to the podcast. So first, Mom and Dad, I would just love if you could introduce yourselves to our listeners. 

Beth DeWyn 1:13

Sure. Okay. My name is Beth and I'm Kayla and Ella's mom. I am a social worker who has done a variety of different jobs, mostly ministry related or health care related. Um, currently I'm working with older adults, but really, no matter what I did, it's a lot of advocating for people, which has really served me well in other ways too. When I'm not working, I enjoy being outside any chance I get. I love to garden. I like to be by the water, by the beach. I like to go kayaking, those kinds of things. That’s a little bit about me. 

Marty DeWyn 1:52

Hi, I'm Marty. I'm Dad. This is, um, a new experience for me. As Beth said, she did a variety of things. I have a variety of a background, but I grew up in California with cows in the yard. That's a way to say we were dairymen. So I know how to drink a lot of milk. I'm in industry now, and, uh, if I'm not doing that, I'm, uh, like my wife says, we like to be by the water. We are beachy people. I think our family all likes to just get our feet in the sand and pull out a good book. And, uh, do some time in the sun. Other things are hunting and fishing and, uh, we are family gamers, and, uh, that's about me.

Kayla 2:39

 Well, thanks for coming on, you guys. I know we've, like, name dropped you a bunch of times on the show, so we appreciate you coming and actually lending your voices. And I also just want to thank you at the top, too, for like, supporting our work this whole time, because I don't think every set of parents would be super excited that their kids were going to go unpack their intimate family struggles, uh, for everyone to listen to. So we really appreciate that you've been so supportive from the beginning, and I'm glad that as we near the end, at least for now, that we can welcome your voices on, too.

Beth 3:20

 It's our pleasure. And, you know, we've talked about this as a family so many times as to the whole, like, we went through all of this. And so the decision, right, to to use it to be helpful. And with the podcast… also just with other things in life. So you know, yeah, we totally support what you're doing. And initially it's a little weird to think about, you know, that everything goes out there. But I mean, again, it's all worth it if someone can benefit and learn from it.

Marty 3:49

 And from every time that you’ve ever said our names or referred to mom and dad, you've never stepped on our toes to where I’m thinking, “They really just said that?” No. None of that. You’ve done a fine job of presenting… I'm just always amazed at the the depth at which you let yourselves think about things and reflect and share from the heart where you were at at a certain time period. And it's like, hmm, gee, I wish I was a journaler, because you did, but I didn’t. 

Kayla 4:21

Yeah. Well, and Ella and I have actually talked about how we journaled a little less actually in the thick of it. You know, in high school I journaled like every day obsessively. It is hard to keep everything straight when you look back and reflect. But I always appreciated growing up, just so the listeners know, like, we as a family always just talked about hard things. Like we definitely were not a household where you couldn’t ask questions; like, we could ask you anything and you would make an age-appropriate response. And so I think that's part of why we're able to, like, give voice to a lot of stuff now is because nothing was like off the table or like, “Oh, you'll understand when you're older.” Like that was never your answer. So I appreciate that. 

Beth 5:10

Yeah. Thank you for saying that.

 Marty 5:12

Like we took you to funerals and things too.

Kayla 5:15

 Yeah, that's true. Yeah. I don't know if we've mentioned that; maybe a long time ago on the podcast, but we did go to a lot of funerals. We had a lot of older friends in the church, and our grandparents had a lot of siblings who passed away when we were little. And so I never found funerals, um, scary per se, because we had been to so many by the time it was someone we were really close to, we at least knew sort of what to expect, even just from a like routine perspective, you know what I mean? Whereas like some kids don't go to any funerals until it's their own grandparent or their parent, and then it's like extra hard, I think. 

Beth 5:53

 Right, to be an adult and have never experienced that. And when I worked in a nursing home, you girls were there. You were riding on people's laps in the wheelchairs like it was all just a normal part of life. It is just different things. Then it wasn't scary.

Kayla 6:08

 I even remember, and this is going to lead me to my next question a little bit. Um, because we asked our husbands this, too, when we had them on, like, what was your experience with cancer prior to Ella's diagnosis? And I think we've mentioned this once or twice, but you just reminded me, Mom, that, um, a girl in our elementary school passed away from cancer when we were little and just speaking about funerals, I remember her funeral. I think I was only in first or second grade, but yeah. And they—I remember they Zoomed her into some school stuff way before. I mean, this was like 2002. So I don't know if this was like early Skype days or what, but they did try to really accommodate her still being a part of the community.

 Beth 6:49

 Mhm. Those are hard questions to answer because a lot of the other funerals and visitations you'd been to were for older people, where in your mind, that's more expected. Right? But she was in your cousin's class, Kayla. When it's closer to your age, you know, that leads to a lot of questions about that and about how… about all kinds of things. But I'd rather have those talks than not. 

Ella 7:19

 Well, that's what I was going to say is as you guys were just talking, I was thinking about how like I'm so grateful that you guys had hard conversations with us. And like Kayla was saying, there was always space to ask questions, but also just like acknowledging hard things and not just like ignoring them. I think that's a huge thing that you equipped us to do, is to be able to acknowledge hard things and work through them, rather than just ignoring them and hope they away. 

Beth 7:50

I appreciate that you both can see that and feel that way as adults, because you know honestly with parenting you're just kind of… you're going day by day and winging it with a lot of the things, you know? [laughter]

Marty 8:04

You can read a lot of good books about how to do it, but what you do with your own and how it’s going to play out, it's all guesswork, you know, and then you find out that if you keep Kayla from reading her books, that's a real tough punishment, you know?

Kayla 8:23

[laughter] Yes, Ella would get something like TV taken away and I would get books taken awy.

Marty 8:29

And for Ella you find out when you put hot sauce on her tongue she goes, “Oh, that's good!” But then you gotta find something else.

Kayla 8:37

Oh man, they're gonna give away our secrets. 

Marty 8:41

Yeah, you gotta parent your kids according to the kids. And let your yes be yes and your no be no.

Kayla 8:48

 Mhm. That's true. You guys did stick to your guns. If your yes was a yes or your no was a no. We did not, listeners, ever have the ability that I remember to wear our parents down; like that was not an option. [laughter]

Beth 9:02

 But my little motto always was “say yes as much as you can.” You know, like there's times you don't want to say yes as a parent because you don't feel like it. But so, we say yes as much as we can. But when you say no, yeah, stick to it. Because when you start to cave… And you know, we've all observed that, when parents cave a lot, and it's tricky. 

Marty 9:27

Like your classmates who got phones at early ages. We didn't get you there. 

Beth 9:32

Poor Ella was one of three in her eighth grade class before high school that didn’t. 

Kayla 9:37

Oh wow. And she made it. She's a normal human. Yeah, I'm sure those talks are only getting harder right now with the technology. But yeah. Circling back to, like, your experience with cancer prior to Ella?

Marty 9:58

 Prior to cancer, the only person in my life that I remembered and only because I was told, not because I experienced him, was my grandpa. At an earlier age for him, he had had some sort of colon cancer and I was just a little dicky if he even had it. So I don't remember it at all. And, you know, occasionally you would hear about somebody getting leukemia back then; this lymphoma stuff, that was all new to me. There wasn't anybody in my immediate family or people that were really close to me that experienced it, that I could get a sense of what was all involved in cancer world. It was just always out there.

Beth 10:42

 I would say I probably had a lot more exposure, whether that's good or bad, right? My siblings and I, none of us ever knew my maternal grandparents because they both had passed by the time my mom was 18, both from cancer. Um, and then some of my mom's siblings had cancer. One of her brothers had it when I was quite young and then went into remission. And then he did relapse many years later. Um, but as a young child then, to know he was my parent's age and, you know, he could get cancer, a daughter younger than me, like just the reality of that. And, you know, friends, neighbors, whatever, their parents, like a little more out there. But then also my sister, by the time Ella had gotten cancer the first time she had had it twice. Um, and then later she relapsed and also had a transplant. And my mom had colon cancer when I was an adult. And then also, one other that I think of was, um, two friends of mine had children that had cancer. One—well, two actually—one woman who had two sons who were in high school. And then another friend whose seven-year-old son had it. And, you know, you hear about it. You walk alongside them best you can. But I circled back to both of those friends an awful lot when we went through our experiences. Mhm. Yeah, that’s just kind of a snippet. I mean there were all kinds of people in my life that I knew, you know?

Marty 12:10

Like a classmate that we went to church with got leukemia. And that was the first time I had known anybody that had to deal with leukemia.

Beth 12:23

 He was one of the first transplants actually in this western area, and his sister was his donor and it failed. But we were very close to him and his family. That's true. 

Kayla 12:34

Yeah. That is a lot. It's hard to remember now thinking way back to when we started this almost a year ago. I think we mentioned some of that history that you just talked about, Mom, just because… yeah, I think your family line unfortunately seems to have a genetic tendency towards cancer. And this is something they're still researching, like, can we pinpoint the gene and like fix it so this doesn't keep happening? Because I think your uncle that you mentioned and then they suspect your grandma as well, it was lymphoma like Ella. They just didn't like have details that we have nowadays. So yeah, hopefully a couple generations from now they can just like remove that gene or something. But yeah, it does seem to kind of go in families like that where a bunch of people have it, which is a bummer.

Beth 13:25

And strange that… I always think it's so odd how my mom's parents had it. She had it, I didn't, but Ella did. But my sister did. Her children didn’t. It's just—it can skip a generation or not. 

Kayla 13:39

Yeah. It's not like parent to child, parent to child is what you're saying. It's like, right, somewhere in the family.

Beth 13:46

Right. So often thinking and I know I've said it to you girls a few times when we were in the thick of it, that I wished it were me and not Ella. And I know you’ve said that it wouldn't make it any easier, but it just… it felt wrong that it skipped me and went to Ella and, you know. But. Yeah.

Ella 14:04

 Well I guess that leads us into my next question for you, and it’s a pretty lofty question. So feel free to share as much or as little as you're comfortable with. But we were thrust into the cancer world as a family when I was diagnosed in 2016. And as my parents, I guess I would just love to hear your perspective of that first cancer diagnosis and then just kind of experience in general.

Marty 14:35

 We wanted, uh, somebody to help you find out what it was that was ailing you when you came back from Honduras. And, you know. What is that? What is it really about? Could it be bugs in there? You know that’s what the hypothesis was. Uh, maybe it's just something light. You know, you were in the water. Who knows what's down there? But yeah, it really, you know, as parents, you're doing your best to keep your kids safe. You're keeping your kids out of harm's way. And cancer just sidesteps any of our care and takes you on regardless. And it's just so humbling to be… a parent when your kid has to go through junk like that. I just remember, you know, setting the stage, we were, um. You had had the biopsy. We moved you to Calvin [College]. And then we knew that we were waiting for the call, and I was at PT. You know, life goes on. There was a text on my phone when I got out and it said, “call me.” So I called and she says, “We have to go to Calvin.” So I knew right then, you know. And when I hung up the phone, I got the car going and I screamed, “Noooo!” Just because it's a whole big thing, you know, there's more to the enchilada than meets the eye until you get there and find out how bad is it? We don't know that yet. And it's like, you know, it happens to everybody else, not your own family. Until it does. But as we try to promote all the time, you know, we're always, as parents, we've always been available to our kids and whatever is needed is what is needed. And we're just glad that we didn't have to figure it out. We just went right to where we could be. We got set up with a beautiful oncology department there and they had the answers and the path that we were going to take and all that. So it's… we didn’t have to try to explore, you know, what are all these things that she told us? Do you, are they really beneficial? No. It's like, they have all the experience. But it's… it's hard to let go and let God and let an oncologist carry your kid. Even though she was wonderful, it—

Beth 17:12

The oncologist.

Marty 17:13

 Yeah. It's out of our control.

Beth 17:16

 Yeah. I think for me, just to add to that, Ella, I think even before Honduras that summer, you weren't feeling well for a long time. You just were not feeling well. We knew something was wrong. And I remember just continually circling back to the doctor, you know, advocating for you and getting pushier and pushier and pushier and not that I wanted that to be the conclusion, but I remember feeling somewhat relieved when it was finally like, we finally know what the heck this is. And we felt really hopeful after meeting with your oncology team. Yeah, I mean, they basically said to her, four months of treatment, it's not going to be fun. You should be fine. You can go on with your life and, you know, just the relief to have a plan. I'm somebody who likes a plan and a way, you know, a way to fix it. And like I said, we fully trusted them. I mean, I never really had—they were amazing from the first time we went there. We got the call and the next morning at, what, 8:00 or 8:30 we were there as a family of four and you know, they were wonderful, they were… as if they realized it was our first time. And it wasn't like this every day, you know, they just they put us at such ease. They were wonderful. And again, because my friends had gone through this, I knew I wanted to, you know, with your blessing, I wanted to have you go there rather than in the adult world because, you know, it is different. I think you talked about that on a podcast or two where they do treat things a little bit differently. So anyway, I was grateful. So then when the doctor asked, we knew without having to flounder. 

 Ella 18:55

Well and I just want to add in here, like when you were introducing yourself and you mentioned that you're a social worker and an advocate, like I just wanted to give you a shout out because that is true. That's my memory of the diagnosis experience too, is that, yeah, sometimes my brain goes down a dark path and I'm like, what if you hadn't been there for me? Or what if we hadn't been pushy? Right? And I think it's just a huge testament to you as an advocate for me, and also just an encouragement to others, like to find someone that can be your advocate, because there's a lot of situations throughout my entire cancer experience where I'm like, if you or Kayla or Dad or myself, like, if we weren't all advocating for me to get the best treatment possible, I don't really know what the outcome would have been, you know?

Marty 19:48

She was your second set of ears to hear all that was going on. And to be able to think through and ask the questions at the right time.

Beth 19:57

 Well, and the ability to speak up, which isn't always easy when it's not my area of expertise, you know. There are a couple occasions—we won't get into details, but where I remember a room full of people—Ella you’ll remember what I'm talking about; and I had to contradict a physician and he pushed back. And then they went and checked the chart, and I ended up being right. But follow your gut, you know, I say that all the time. If you have this premonition to do something and it's appropriate, I've learned you just do it. And I learned that because when my parents were rapidly failing and their health was declining, I was their advocate. So they were, you know, I learned a lot through those situations to know kind of better how to do it when it was your turn.

Ella 20:46

So thank you, mom, for being my advocate.

Beth 20:48

 Sorry I had to be, but. Right. Yeah, yeah.

Kayla 20:52

 Yeah. We learned in nursing school that the patient is the expert in themselves. Right. So it's like you can have all the expert knowledge, but you have to respect the patient's knowledge of themselves. I'm not sure they teach that everywhere or to doctors as opposed to nurses. I think it very much depends on who you get in the medical field if they see it that way, but yeah.

 Beth 21:16

 Yeah. Personality with the doctor. 

Kayla 21:24

Before we jump ahead to Ella's relapse, I guess I wanted to ask a little bit about that time in between her two cancers. So she was declared in remission right around Christmas time. And then we had almost eight months, because it was August again one year later from her first diagnosis, when she relapsed. And like, I was busy finishing college and getting married. And so obviously you guys were a little wrapped up in helping me with my wedding and everything. But yeah, since then, Ella and I have talked on the podcast and off the podcast about how I think our whole family was a little bit like, okay, like, let's go back to normal life. Um, and then maybe we weren't quite ready to jump back in, but I've never directly asked you guys, like, what was that like for you when Ella moved back to college? Not even really a full month after being in recovery. Like, I don't know. How was that in between time for you guys?

Beth 22:19

That was extremely hard for me to, like, release her again. To let her go back to college and to just… I mean, I fully trusted her that she would take care of herself and all of that, but just, you know, she'd been through so much. And like you said earlier on the podcast, to go from that really weakened state and being declared in remission and then not a very long later, going back to college, living in the dorms and taking a full load of classes, you know, and still going back and forth, right, for appointments and whatever. And thankfully, you were open to me still being involved in all of that. I think I did still manage the calls and stuff for you at that point. So we were still very much involved, but just the whole not seeing you day to day and like, yeah, keeping an eye on how you looked, how you felt, all of that stuff. So, but also really glad that you could, you know, thankful that you were able to resume a bit of a normal life. And I had continued working part time the first time you had cancer, I reduced my hours to part time. And then when you went back, I went back to full time. So then life kind of picks up again. But you're right, Kayla, when you said we kind of thought life would go back to normal, I don't think it really did or ever does, especially the second time, but the first time too. Like, you just think you can just go on with life and it doesn't work that way.

Marty 23:51

 Some of my big exclamation of “No!” She had just moved to campus. I remember I only had one year of college on-campus experience. That was my choice. But I remember that life surrounded by all your peers from all over the place. It's just a unique experience. But that got robbed from her and, you know, it's like, okay, it was necessary to treat her and get her healthy again. And yeah, we were helping her go back, but it was still less than, because now all them kids that have been together for four months all knew each other. And there was that trying to play catch up kind of a thing. And it seems like, you know how the years developed and COVID and everything else, you got, you guys got robbed with a lot of things. Ella has a strange college experience because it wasn't just four years on campus, done. It was start stop start stop start, move. Go back. I just feel for her because, you know, in my one year, I had more growing experiences away from home, and you just hope that both of our kids could have had the same thing. But, uh, God had another story.

Kayla 25:31

Yeah so then, poor Ella. Like we said, she jumped into a full class load. I'm gonna also say she got a job. She worked with me where I worked on campus at the Phonathon, calling alumni and asking for donations. So not exactly a walk in the park.

Ella 25:46

 Not my favorite job.

Kayla 25:48

 But it's funny because I really loved that job. But it was not Ella’s cup of tea, which is fair. And then we also did a dance class together, like an extracurricular activity. So it's not like you eased back into anything. And then that summer you took an entire semester of classes at the local community college so that you would, like, come back in the fall ready for sophomore year, caught up with your friends. But as you know, if you've been listening to the podcast, she relapsed in August, right? Like a day or two after my birthday, I think, like right around the same time as the year before. So, I don't know. Mom and Dad, whatever you want to share related to relapse and the transplant. I mean, I know that's a huge, long experience.

Marty 26:32

 Once again, like, it was the… she has to put it on hold again. Really? Robbed twice. Really? But then we also knew the yuck that it takes to get back in, to get all the crazy drugs, and the hair. The hair goes, and it's like… But at least you had the time at your sister's wedding, Ella.  

Beth 26:59

For all of us, really.

Marty 27:01

 It was like a respite in between.

Beth  27:03

 Mhm. Yeah. I am thankful for that. I think you talked recently on the podcast about that again. Yeah it definitely felt like whiplash. It felt surreal. It felt like how in the world is this happening. You know, how, why… they said three or four months, like no. You know, all kinds of feelings and emotions and working through all of that in your heart and in your head, and yet warming up for what was to come again. Kind of getting it out. I, you know, Dad talked about screaming in his car. I had some really loud, angry conversations with God about that. Um, and then, you know, you get all that out and again, give us a plan. What do we have to do? You know?

Marty 27:48

And I'm thankful that Beth was able to take off from work to be there. Or especially like when you got to post-transplant and needed to have the quarantine time. She was well versed in quarantine when COVID got here. I mean, you haven't seen it 100 days, folks. You know that’s a long stint.

Beth 28:13

Yeah well, I was really grateful too that I could do that. It's kind of interesting though, because as Ella or Kayla you just said, we got the call again in August. I remember exactly where I was at my office at work when I got that call. And I remember just quietly telling my supervisor and leaving and coming home to tell Ella who was home alone.

Marty 28:32

 Was it the same ENT?

Beth 28:34

 No, it was actually her oncologist that called with the results. But, um, I remember the first time my coworkers had said, are you sure you don't want to, you know, take a leave of absence? And no, it was good for me to kind of work part time, I thought, but then this time there was just absolutely no thought about it, like it was just full force ahead. And the transplant was supposed to originally be, I think, in October. And then because they weren't able to get it all and it was postponed then until December. So what was going to be a two or three month leave of absence ended up being seven. Um, which was a really long time. But, you know, I mean, there's nothing more important to me. 

Marty 29:15

No, there isn't. 

Beth 29:16

So I was grateful for coworkers who graciously donated vacation time and people in our lives who came around us and, like, just knew with me not working, things had to be different. Thankfully it all worked out. But it did… It dominated all of our lives and I don't know if it was… I don't think it was easier either way for me to be in the hospital with Ella 24/7, or for Kayla and Dad to have to keep working and checking in as much as you possibly can, but then having to turn it on and off. Do you know what I mean? 

Marty 29:51

There’s nothing to go back to.

Beth 29:53

 Yeah, I mean, it stinks either way, you know? But again, the base that we had as a family, I think: be open and honest and communicating. Oh, I don't know if you remember this, this is random, but soon after you were diagnosed, I remember saying to you, you're in charge. Like you're 18. And so it was like, if and when you want to see people, if you don't want to see people, if, you know, whatever, like it was up to you how you wanted all that to go. And then when we moved in for our 30 day hospital stay together in the same room, I remember saying, it's going to be a long haul, and there's going to be times I'm driving you crazy and you just have to tell me, like, we're going to be completely honest and open and try not to hurt, you know, have hurt feelings because we just that's how we're going to get through this. So do you remember that conversation? 

Ella 30:43

 Oh yeah. And I do remember I really appreciated that you gave me the space to be in charge, so to speak, because I feel like as a parent, I'm sure I can imagine you kind of wanted some of that control for yourself, too, right? Dad what you were saying about, like, wanting to protect your kid, like I can see where if you're like, full steam ahead with this, like cancer stuff, it's like, all right, we're going to do this, this and this. But like, it was really great that you still kept my voice and perspective and whatever, like, at the forefront and wanted like my needs and my wants to be factored into everything, if that makes sense. 

Beth 31:25

Definitely. I mean, you were 18, you know, I'm sure it would have been different if you were young, but yeah, I mean, I'm glad that we could do that. I was a bit of a freak about the rules, I will confess, after the transplant, it's like we had one shot, you know? And again, one of my friends is like, yeah, they're going to give you a whole manual of all the stuff you have to do, your binder, and it's going to feel completely overwhelming. But when we had that pause, she was very wise in telling me, it's disappointing, you know, when they had to reschedule the transplant. But she said, now take this time and minimize everything in your house, like just put away anything you don’t need for the next six months and all kinds of little tips that really, really helped.

Marty 32:10

 I'm just glad that Ella… as you gave her “in chargeness” or… to be in charge, she also made you the heavy for dealing with if somebody wanted to come to visit, whatever else, you made those arrangements. You made the connection, you were that person. It just made sense, you know, because hit or miss, Ella could be, you know, either tossing her cookies or whatever else, not feeling barely like she could breathe or keep her eyes open, and somebody has got, you know, to have the whereabouts. And it was, you know, I'm just so appreciative that you guys were able to coexist in the hospital together and it worked.

Beth 33:03

 Mhm. And even once you were back home I remember that too with visitors. You know again I said to you you're in charge. And you know it was wonderful when people wanted to, but like there were a lot of times it just wasn't going to work. And so I, you know, of course would ask you and if not, then, yeah, I mean, again, nothing was more important to us than, you know, you having the best shot you could at coming out of this healthy.

Marty 33:30

 So when you needed to be held, we were there to hold you. But at your age, we were also working on letting you go. It's tricky. But hopefully you both know that you're always… Our arms are always open wide if you need a hug and we'll hold as much as you want us to hold. We want you to fly as free as you can be. 

Ella 33:56

Thank you. I was just going to say we've talked, I think, in previous episodes about how I was just at such a strange age for all of this to happen, right? Like just when I was supposed to be independent and learning how to live on my own and be an adult and all these things, like, all of a sudden I was more dependent on you guys than I had ever really been since I was a tiny child. Like, you know, I think back to that hospital stay, Mom. And like, I really appreciated you saying that from the beginning of, like, we need to be honest with each other, because for the listeners, like, she was quite literally bathing me and like, occasionally wiping my butt. And I was like 19 years old, like, that's—it's a weird thing for you, Mom. It was weird for me. And it's like, I was so grateful that you were there to do that for me. But it's like it was really important that we had a really open, honest relationship too. 

Beth 34:58

Absolutely. Mhm.

Ella 35:01

Yeah and then I know… I can only imagine how hard then it was, like, after I'd been through all of that, to then send me off again and be like okay, like you can do this, like college take two. After literally all of that, I just… that's a lot. 

Beth 35:16

Yeah. Well not letting the way we were freaking out inside show to you, quite. It's hard. The back and forth, stop start stop start. All of that was hard on all of us, I think. But Ella, back to that hospital talk, like about bathing and wiping and all of those tricky things. You know, kudos to you too, because you're 19 years old and like, have the grace to let your mom do those things. I mean, I know there were times you felt like you didn't have a choice, but you always handled that with such grace, which I appreciate it very much. Because a lot, I mean, let's face it, a lot of teenagers and moms could never have, well, I guess you get through it, but yeah, we really didn't have any big hassles or problems, but maybe because we set it straight at the beginning, about “let me know.”

Kayla 36:11

Yeah, I don't know if you and I, Mom, would’ve done as well. It's always just funny to think about… in high school, I think you and I had a lot more of that classic, I don't know, I had a lot of teenage, like, “Whatever mom!” like kind of attitude, and I guess I wasn’t living there when Ella was coming up through high school, so I don't know what that dynamic was. But yeah, I've said to Ella too, like I had times where I wished it was me for her sake because like, I was always the one that was fine with getting pokes and like medical stuff and all of that and you know, but. At the end of the day, it's like, that's just a grasp for control, right? Like we won't ever know what it would have been like if any of the rest of us had it. It’s just strange to think about.

Marty 37:00

 You know, it's like we still don't know where she got it. There are some, you know, genetically, it could be there. Uh, in the environment, it could be there. But I'm thinking all the things I've been exposed to chemically and otherwise throughout all the years, being in agriculture and then in industry and whatever else. I do have my share of, of ailments, but not that silly C-word. I'm thinking if anybody should have it by now it would have been me. No, my kid gets it.

Kayla 37:34

 And it's like, don't you wish in a way… I don't know. Some days you wish you had something to point to. Right. To be like, oh, she got it from this exposure to this chemical. And then we can sue that company and like have justice or something. [laughter] But it's like, yeah, it's probably a combination. Well, I know, I'm just saying, like, to just have something to point at. But it's just like cancer usually is like a combo of your genetics, and your exposure and like a random cell that went rogue. And it's just like, so frustrating that you can't point at anything.

Beth 38:11

 And we did struggle with that as parents. I mean, I think we had several private conversations about not just why, but how? Where? Like, is it our house? Is it our, you know, who knows? Just wondering. Yeah. Like trying to solve it. Trying to solve it. But we'll never know. Or for how long you had it? Like who knows, right. I'm just glad we were aggressive.

Kayla 38:39

 Yeah, that kind of reminds me when you just brought up how you had, you know, conversations as parents together about, like, is it our house? Is it this? It's like, what else comes to mind about the parent perspective that, you know, we haven't maybe covered on the podcast or like, maybe we haven't even talked about as a family. Um, whatever you're comfortable sharing, just because obviously that hasn't been our experience. So I'm curious if anything came to mind for you about the parent aspect specifically that's—or do you ever hear a podcast episode and be like, oh, I experienced that really differently from what we are saying? 

Marty 39:20

Well, because of Ella's journey, including the stem cell and all that. And knowing the name of some of the drugs and what some of the side effects are. When my buddy had a relapse of his Hodgkin's lymphoma, I was able to—and then he went for his transplant, so I could ask leading questions because I knew what was coming. And that has been, you know, I've kind of reconnected with him over the last couple of years and, uh, interesting to know he appreciated anything I could give as to yeah, and then, you know, if he had a question, I could ask Ella, “Hey, how did you respond to this, that or the other thing?” And it's just being in the know. I mean, it's a whole different world. It's a world of wonderful people that you never wish were part of your family, but you're glad they are. But now that you've been there, you know, being able to give back to the community that helped you have a healthy kid is a neat experience that we have.

Beth 40:36

 Well, and I think your question, you asked something about us as parents. Like Dad kind of said earlier, I don't think we were ever helicopter parents when you guys were growing up. But as you said, we were all very close and had open conversations and had a pulse on how everybody was doing, just because that's how we operated as a family. So then I think in some ways, maybe that made it that much tougher in some ways to release Ella back all of the different times. You know, because we were used to having a pulse on it. And we had a close relationship and just so very much wanted the best for her. 

Marty 41:16

Well, yeah. You grew up having a great relationship with your mother. So you're hoping now that you had daughters, you'd have great relationships with your daughters. And so this experience also gave you an opportunity to have some great one on one.

 Kayla 41:33

[laughter] A little too much one on one maybe.

Ella 41:35

That's one way to put it! [laughter]

Beth 41:37

Not the way we necessarily intended, but yeah, true.

Marty 41:40

But the dynamic of: it does work to be a friend of your parents.

Beth 41:47

 Yeah. And I think also as parents it was hard… well I don’t know about hard, but, you know, empty nesting, right? Like, Kayla, you went to college. I remember, Ella, you remember this because you probably were more aware of it than Kayla was. Because I tried to hide it from Kayla. I was crying on the regular about you leaving, which is crazy you were just an hour away, but just that whole “it will never be the same” kind of a thing, you know what I mean? And for whatever reason, I didn't have that with Ella. Probably because we were more distracted that summer with figuring out what the heck was going on. But the whole, you know, the empty nesting thing. So then having you go back and forth, stop and start or stop and start, you know, three times, is it three times then COVID? And then she had to move back, you know, her last year so, just all of that and just readjusting and not that, you know, it just changes life. Not that it's bad or good. It's just adjusting again, which I think we did fairly well. But it was… it's a lot of, you know.

Marty 42:56

 I just wanted to—I just know that that level of independence that you want to express in yourself as you head off to college is something that I wanted to flourish in my kids when they went. So when a medical condition hampers that  it's like, step sideways, you know? It's like we're not going forward. We're stepping sideways. We're doing something different.

Beth 43:25

 Pivoting. Yeah. I think too for us as a couple, I think the first time, for whatever reason, was a lot tougher. Which is odd because it was shorter and we were still at home. But I think part of that was, I take ownership of a lot of that because I was working part time and I was managing, you know, whatever with Ella’s cancer. And like you said, Kayla, we were trying to just kind of do this and go on with life. And I think you and I, Marty, were under a lot more friction in our relationship the first time. And I remember getting the news of Ella being re-diagnosed and you and I having a conversation and me saying, we’ve got to do this better this time. And we did, and you know, I don't know, other than being aware of it, and, and I think for me, when I was working part time and going to the hospital all the time, I was too exhausted or too whatever to inform you to the extent that you had hoped for. And so once I figured out how to do that better and communicate better, you know, and I'm grateful that all of our relationships survived this, I think we're all in stronger relationships, closer and better people because of what we went through. You know, there's marriages that end when kids have a sort of a sickness or people lose a child, understandably. I remember somebody who you knew, Ella, and, um, they passed from cancer, and I remember another person in my life saying, oh, you know, now that they got through that whole thing, like, now they're going to get divorced? And I'm like, you know what, I get that. I do, I really get that. I can't imagine the pain they're dealing with. I know the pain, you know, and the friction, right, that is in a relationship when you are under stress and you both want so badly for your child to make it, and not every child does. And I can't imagine working through that as a family. 

Kayla 45:25

Yeah. I appreciate you being vulnerable about that. Um, you guys haven't heard it yet, but we talked with our husbands. When this airs, the listeners will have just heard our husband episode, and we talk about that, too. Like, we feel like our marriages have been strengthened by cancer, but we tried to hold space and say, like, we know that's not always the case. And it's like some marriages fall apart, too. And I think it's a combination of work and luck. Right. Like, um, you have to have both parties who are willing to come to the table and keep working at it. And so if you're like a listener and you feel like, you know, your significant other won't come to the table and work on it or won't admit there's a problem, like, you guys admitted to each other the, like, the second time: Okay, that wasn't great the first time; we’ve got to work on this. If one person won't admit there's a problem, you know… or like things like if somebody passes away, which that's outside of our experience, like if your child dies. Yeah, I don't… I have, you know, all the grace and compassion for that in the world because I don't know how you get through that.

Beth 46:38

 Yeah, yeah. And you know that brings up another topic we very slightly touched on. But the whole thing of all the people that this experience brings into your lives that you literally would never have met before. You know, whether their family member or child made it or not. It's like the family you never wanted but you have, like Dad said earlier and, you know, and some of them have made it and some of them haven't. And then, yeah, dealing with that. Like walking alongside. No matter what. You know, just reaching out and and this whole experience, I always thought I was somewhat empathetic of a person and as a social worker, but this experience has just made it that much more profound for things like cancer, but also for chronic things, you know, to be aware and to let those people know that they're not forgotten. And just a short text. You guys have said it before on your podcast, but, you know, comparing the first and second experience, I will tell you that I was very disappointed at some people in my life, especially the second time around. It was amazing who showed up and who didn't. And so that just taught me, you know, again, not trying to sound pious; like we learned from this. Thankfully. I'm sure I fail at it all the time, but I want to be the kind of person who shows up. 

Ella 48:03

So another thing that we wanted to ask is how has it been listening to the podcast? You know, I think like we mentioned, you guys have been so supportive of our work, but I'm sure it has to be a somewhat interesting experience to hear your daughters talking on a weekly basis about your intimate, personal family lives, so we would love to hear from your perspective how that's been for you guys.

Marty 48:30

 Well the nice thing I learned from your podcast is a different vocabulary for some things. You've created space, you have a bandwidth, you have other words where you're… it's not just the words but listening. It always, you know, it's… I wish sometimes that I had the ability to stop and think at the depth at which you guys are reflecting. Yeah sure, I was there for all of them. Sure. I stepped in and was part of it as much as I could possibly be. But I, I guess there's many things in my life that I haven't just pondered and stopped and reflected, and it's good to hear that you can share some wisdom or share your experience in a way that touches more people than just people that have had lymphoma or people that are, uh, are dealing with some kind of struggle in their life. And you are just… you're being honest and real in all the little things and all the aspects, and you thought of all these things and it's great. I just, I get dad tears in my eye for how cool, you know, my kids are doing this. They got to be on NPR. There's people that are recognizing them. So I got that business card. I know I've handed it out at moments when, hey, it sounds like this might be something you could go to. So just, you know, having that resource there. I know there’s just so many people that have done the same thing you guys are doing in your relationship that they have maybe pondered it, but you're giving sources, resources and just thank you for doing that. I think you're doing it for the greater good. And I’m… as a dad I'm proud of my kids. 

Kayla 50:40

Aww. Thanks Dad. 

Ella 50:41

Yeah. Thanks, Dad. 

Beth 50:42

I would agree. I definitely want to echo the proudness. Like, you know, you wonder what it's like to hear it. At first it was really strange. I mean, you know, just since you're on a podcast, I listen to all kinds of podcasts and, like, here's my kids actually doing it on the app. Like the real app. Yeah, you're right down there on the Apple app. And as you know, I think you even said it one time, I’m probably one of your first, earliest listeners as I often am working out early in the morning before work. But I mean, I feel all the feels, you know, while I'm listening, it's surreal. Sometimes it brings me back to to that exact moment and I can get tearful or, you know, sometimes I laugh at things or sometimes I want to correct a thing or, you know, I remember it differently or, you know, whatever, but it's all the different perspectives, you know? We've had hundreds, if not thousands of conversations since all of this about processing together. So yeah, I mean, sure, a lot of it's vulnerable stuff about us, but more so about you girls and your willingness to, you know, be real, but share all of that, too. It's one thing to share that with family or friends or people you know you're comfortable with, but to just put it out there and all for the greater good, you know, there's people who are going to be benefiting from this. I mean, I think you have no idea how many people. I still have people come up to me, you know, in my life that say “ I was listening to the girls. I thought it was really great how they pointed out, you know, this or that” and yeah, it's just awesome. 

Marty 52:19

 So you need to find a way to perpetuate this thing. Not that you have to do it, but make sure that whatever you do have in content stays available.

Kayla 52:29

 Yes, it will be live. That's a good reminder for our listeners. So as we've said, we're going to go on break, at least for the summer. We don't know what the future holds, but the podcast will still exist out there. The website will stay live and the podcast will stay live. So there won't be new episodes, but you can still go back and listen to these.

Beth 52:50

 Yeah, and it really never gets dated. I mean, it's still the same information, the same experiences, you know, and what we learned.

Kayla 52:59

 I would love if it's dated someday to where people don't have to go through this anymore. That'd be awesome. But unfortunately, that's probably a far off, distant future with how big cancer is.

Beth 53:13

 Yeah. Well, I'm grateful for you girls and for all of your work and time and effort into it and for all the potential good that's coming from it. So, thank you. 

Marty 53:27

 It really shows you girls have passion about this by your honesty in every topic you presented and it's well done.

Kayla 53:35

 Mhm. Well thanks. We didn't just bring you on here to brag on us, but we appreciate the support and the pride that you have. And we appreciate you being supportive, like we said at the beginning, this whole time and not being like, “Hey can you say less?” You know, like we appreciate you just supporting us being honest. And for you guys coming on today and sharing more about your experience. So. Yeah. Thank you. We love you guys.

Beth 54:04

Yeah well you’re welcome. Thank you for the opportunity.

Marty 54:08

 My first time on a podcast.

Ella 54:11

 Yeah. Woohoo! 

Kayla 54:14

Yeah well we’ll have two more episodes until we go on summer break. So next week, our listeners can expect a short but sweet episode packed full of survivorship resources. So ideas about networks and things to access in your survivorship season. And then our last episode will be a year in review. And we'll kind of look back over the year and talk about what resonated with people. So until next week we hope you all have the best week available to you.