Episode 39: Parenting Tweens through Cancer - Guest Episode with Trish Levoit

Written By Kayla Crum

Today we get the pleasure of bringing you our second guest episode. Mom of two Trish shares her family’s right-now, real-life experience with her son’s leukemia. Parents of tweens - or anyone with tweens in their life - might find this episode particularly helpful! We thank Trish for her openness with their story as it plays out in real time.

SHOW NOTES

Sources and Further Reading:

  • You can reach out to us here if you want to follow up with either of our guests; we can pass along your message. They are also open to sharing resources they have found helpful.

  • Parent groups and resources recommended by Trish:

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.  

—-------------------

Kayla 0:42 

Welcome back to the My Sister's Cancer podcast. This is your co-host, Kayla Crum, and I am delighted to share with you our second guest episode. This one will feature a mom who is currently going through cancer treatment for her son and watching her daughter navigate that alongside of him. So without further ado, I'll let you listen to Trish’s story. Thanks for joining us today.

 

Trish Levoit, Guest 1:10

 So my name is Trish. I'm a mom of two kids and I'm also an architect, but when I had my kids, I - they're pretty close in age. They're less than two years apart. 18 months apart. After becoming a mom, I decided I only wanted to work part-time and kind of spend a lot of time focused on their activities. So prior to my son's diagnosis, I spent a lot of time driving to and from soccer practice, dropping off at art class, theater rehearsals: a lot of driving. And then my son was diagnosed summer of 2023 with leukemia. And it's interesting because, like, a lot of things stopped, right? Like he had to stop soccer and stuff, but it's kind of like the same kind of skills. So like, I kept driving. I was just driving to like the children's hospital. My children right now are twelve and ten. So my son is twelve. And like I said, he was diagnosed with acute lymphoblastic leukemia - it’s typically just called ALL - July 2023. 

Kayla 2:20

Yeah. And how long before the diagnosis, if you're comfortable sharing, was he having health concerns that led you to that diagnosis? 

Trish 2:31

Yeah, I was just talking to someone about this. It's kind of interesting, I think, because childhood cancer is relatively rare. I mean, I know that once you're in this space, you see a lot of the like, awareness, promotion. But if you're not in the space, it's not something you ever hear about. So, for example, you know, they'll post things like on Instagram like, you know, signs to watch out for, like joint pain, low grade fever. And, you know, we should've seen some of those and just thought, oh, growing pains or, you know, like you would never think, yeah. Um, but it was cancer. And so, interestingly enough, um, a couple of months before he was diagnosed, he was complaining about kind of feeling rundown after soccer practice, just kind of like some days having less energy. And I kind of put it in the back of my mind to mention it to the doctor. Um, the big irony here is my son hates needles. And so anytime they would suggest, “Oh, we could always do a blood test, check your iron level.” Like if it wasn't medically required, like he was not going to do it. And so in my head, I was like, take him to the pediatrician. He's not going to want to do an iron test. So, gosh, you know, um, but yeah, I kind of had it in my head like, I'm gonna bring it up at his next, well visit. And then ironically, the weekend he got diagnosed or the week he got diagnosed, he - his legs hurt so much he couldn't walk and he had a fever. And, so that was in the summer. And ironically, after, when he was diagnosed, people who saw him over the summer, they had mentioned, “Oh yeah. In June he seemed really like, less energy.” And in my head I'm kind of like, why didn't anyone say anything? Um, and again, you know, I'm sure people were thinking like, “Oh, you just finished the end of school, or it's hot outside and he wants to sit out.” Um, but yeah, the - it happened really fast. He had a weekend of really bizarre, um, symptoms like fever and joint pain, leg pain. And he was diagnosed on the following Tuesday. 

Kayla 4:52

Wow. Yeah. It's always a different path to get to diagnosis, but then, yeah, when you finally get there, it's such a disheartening day for sure.

Trish 5:02

 Yeah.

Kayla 5:03

 When did you find our podcast?

 

Trish 5:06

 Oh, so right after he was diagnosed. Um, I feel like any time there is a life change, whether it's having children or going into, you know, a specific professional industry, I've always found it really helpful to like, okay, let's find the Facebook groups, right? To hear from other people who can share tips. Um, one group is called Momcology. So it's like the word mom and oncology combined. And they actually have a whole process where I think you have to register on their website first and then they give you access. But it's really great because, um, they have many groups, like they have a main group and, and they have a lot of subgroups based on the cancer type or, or different stages of treatment type. So that's been really helpful. There's another one that I think it doesn't have that many privacy settings. Um, I can email you the name. I think it's called, uh, childhood leukemia or something like that. Um, that group is really active. And it's interesting with the Facebook groups because for the most part, it has people from all over the world. And so it's really interesting to kind of see, um, how people in different countries or different continents are approaching treatment or in some cases they're upset because they don't have a standard of treatment and they have to travel to another country to get it. So I think what's hard with the groups, too, is so much of how children respond to treatment, and probably adults too - it's really individualized. So sometimes you might see someone have a reaction to a certain type of treatment, and then you panic and then your child is fine. So there is some caveat, um, to being involved with the groups. But yeah, I can send you a couple that, um, would be great for people looking for other people to connect with. 

Kayla 7:21

Yeah, thank you. 

Trish 7:22

And so it was actually very hard to find the groups. Uh, I think some of them are hidden for privacy reasons, but once I found the groups, I was just on them every day. Um, I think what's really tricky about the groups is I feel like cancer, um, treatment and research evolves so quickly. So you might be in this group and you're searching up an old post from 2020, and like, maybe that treatment is outdated or… So it was a little, like, you know, it's a mixed bag. But someone had posted the NPR article link that featured your podcast, and it kind of hit me right at the right time - I think I was, I think my son's diagnosis had been around for a couple of months at that point. And so I saw the link and I started listening. I ended up listening to every single episode, I think in span of 3 or 4 days. 

Ella 8:26

Wow.

 

Trish 8:27

 Because I just wanted to like, okay, what's next? What's next? I mean, I really love the way you guys kind of isolate each topic and expand on it. You know, for example, I listened to another podcast about moms in the cooking industry who, you know, they have children. And so, like, they'll have one episode about, you know, chopping veggies, one episode about meal planning, one episode about takeout. Right. So I really like, um, that process of breaking down all these little things that are part of your life. And so when I heard, uh, I started hearing your episodes, I thought, oh, okay, this is perfect to like help keep me company during this journey.

Kayla 9:09

 Oh, well, I'm so glad to hear that. That NPR feature, we were so fortunate to have that, and it helped us find a lot of great listeners and connect with people. So you're not the only parent, um, who's reached out to us. And so that's something I didn't expect when we started this. It was first to kind of reach those siblings right in sort of the young adult space, but actually a fair amount of parents have said, oh, this helps me kind of maybe get more in my kid's head, too. So was that your experience, like thinking about your daughter as she goes through this with your son? Has that been sort of the angle you're listening through? Or…

 

Trish 9:45

 Yeah, I think at first I was curious to hear about the sibling dynamic, but I do think the struggle as a parent, especially - so my son's twelve, so he's not quite adolescent, he’s in that tween phase. Um, and, you know, he's never been through anything like this and he's not interested in sharing his feelings and thoughts. And so I think when he was diagnosed there, there was a bit of a like barrier, right? Like he wants his own space to process things. And I think pretty early on it occurred to me, especially because, Ella, you were diagnosed at such a like pivotal point, right? And every time you talk about your experience, I'm like, oh my gosh. It's like an opportunity to see how my son feels. Uh, the way our school district works is you start middle school in seventh grade. So sixth grade is your last elementary school, and that's the year he's missing. So he had been looking forward to it. You know, so many things. And it got taken away in the blink of an eye. And so a lot of you, Ella, talking about college… You know I really related to that, like related the situation to that. Um, even though it's elementary school.

Ella 11:10

 For sure. Yeah. 

Kayla 11:11

Yeah those markers that we just all expect to hit through life. Right. Like it's just hard when that gets taken away and like in Ella’s case she ended up going back to college, but like, you can't ever get that first semester back and like he can't get his sixth grade year back. And that's super hard, right? 

Trish 11:30

Yeah, I think there's a big struggle too… And I don't know if you, I'm sure you experienced this where it's like you got to go back, but then, you know, you might have like, you still have to have appointments with your oncologist or, you know, like you're still very much in the cancer world, but then you're trying to assimilate back into normal life. We are able to - we kind of track his immunity levels really closely. We always get printouts from the nurses when they take his blood, and anytime he has good immunity levels, we'll send him to school for small periods of time. And he's starting to articulate that, “I like going, but it feels different,” right? Like it's hard to focus knowing that the next day you have to get admitted back to the hospital for chemo or whatever. 

Ella 12:23

Yeah, I'm sure in many ways he feels kind of like he has a foot in both worlds. Like he's probably still trying to be the - the normal sixth grader. Right? But then it's like his experience is different from everyone else, and he's still in that hospital and health care and cancer world. 

Trish 12:40

Exactly. Yeah. 

Kayla 12:42

And then for your daughter, I mean, has she continued to attend school, quote unquote normally? But I'm sure that's hard for her too.

Trish 12:51

 Yeah. So we have basically tried to keep her life, quote unquote, as normal as possible. And, you know, we're about… let’s see, I think we're about nine months into this journey and it's coming out a lot where she's starting to articulate, like, “I can't focus when I'm in school because I'm worried” or, um, you know, she ended up - she had a lot of activities before, and we started peeling them back slowly just to kind of like, on one hand, they were good distractions. But then on the other hand, I could see it being overwhelming. Right? You can't feel your feelings if you're, you know, you travel across town to all these activities. So, um, we're trying to make space for that too. 

Kayla 13:42

Mhm. Yeah. I just think back on being ten, eleven or twelve, like right in your kids’ ages. And that's a tough age, like a tweenager, without cancer, you know? And it's like yeah I can't imagine like layering that on top of those confusing years. So that's difficult I'm sure. Because we obviously aren't parents or like have walked through this with younger kids, if there's other parents that listen to this episode, do you have anything - I mean, I know it's hard to sum it up, but like, things you did do that you're glad now, like, for instance, you just shared, you've been slowly peeling back on your daughter's activities, and that would be a good thought if someone's, you know, sensing that their kid is struggling to to keep up. So are there other things, like, that you can think of that other parents might want to hear from your experience that obviously, like, we haven't covered because we haven't been there?

 

Trish 14:38

 Yeah. So we're really fortunate that our children's hospital, they have a team there. It's the social worker, one of the nurses and someone from child life. They all host this caregiver support group. So it's a zoom and it's once a month. They do a really good job about structuring it with some questions. And they basically invite any oncology parent to join. Um, and it's a mix. You have people whose child, you know, were newly diagnosed, uh, people in active treatment, um, people whose children are finished with treatment and, you know, are in survivorship. So it's really neat to hear different perspectives. And it's really neat to, you know, have people relate to how you're feeling. Right. Like if it's like one session, we literally spent half the time brainstorming what are all the different anti-nausea medications. Right. Because that's something that is a really important topic to all of our children. What's really nice about the hospital facilitating it is that eventually when you go for treatment, you start to see people. So I'll be at the vending machine and I'll say, “Oh, you're so-and-so’s mom. I remember you from the zoom.” And I've actually met quite - like several parents that way. Um, which is really great because then when you're on site for treatment, like you kind of have a buddy, right? Um, and even though we don't know each other very well, because we have such a big thing in common, it's been really great to just - you can pick up right where you left off in the zoom and have a conversation or go get coffee together. So I've been able to make great friends online and in person through that zoom. So I would really look for those types of support to kind of find other parents going through what you're going through. And the other thing I would really recommend… And this also comes up in the groups and comes up when I see parents in the hallway is um, I think as parents we, we feel a big responsibility to, you know, I want to provide, like the best childhood I can or I want you to have all the food you want, or I want you to have all the activities you want. And when something like cancer hits, I think it's inevitable that all parents go through the thought process of, “Was this my fault? Did I do something wrong? Did I not know enough?” And in all the conversations I've had with people and all the conversations I've had with my own therapist, you know, the resounding conclusion is that it's not your fault. And I think that's such an important thing for parents to truly accept. And it’s not even the diagnosis. Some parents have talked to me about some side effects their children have had and they felt like, did I drop the ball? You know, should I have asked more questions or, you know, why did this other thing happen? And it's like, hey, you know, we're humans. We're not doctors. The doctors don't even catch everything. You know, you really have to take it easy on yourself and… And not fall down that rabbit hole of self-blame. 

Kayla 18:16

Yeah, that's a really good point. I even felt a little bit that way as being a nurse and being Ella's sister. And then of all things, I was a cancer nurse. And so like, I was like, you know, I should have XYZ. Or then as it progressed, like, it's like a burden to know all the things because you can never know all the things, but you feel like you should. So yeah, to try to just remind yourself to remove that - that impossible weight. Right. Because none of us have everything. That's super hard, but definitely important.

 

Trish 18:54

 Exactly.

Kayla 18:55

Trish, you had shared a video with me and it was a little bit of your daughter sharing about her experience as a sibling.

 

Trish’s Daughter 19:03

 Everything in my life has changed since my brother was diagnosed with cancer. I felt anger because I was the last to be told about his diagnosis. I feel scared when he goes for a treatment because I know it's hard for him. For example, he throws up and I get worried about him. But I am really thankful that it worked out with my brother's treatment schedule to still spend Thanksgiving and Christmas with extended family.

Kayla 19:31

 I heard her use the word angry, which I was kind of impressed that she was willing to verbalize that and it took me, as a much older person, a while to come around and say, you know what? I'm angry. So I really admired that. And I guess I just wondered how you're working through the emotional side of things with your kids. It's - it's tricky at that age to see if they even want to verbalize anything. So I just wondered what your approach has been there.

Trish 19:56

 We've kind of been lucky in the sense that certain opportunities have sort of presented themselves at the right time. Um, over the holidays, there was - there were two sisters who came to the hospital and the younger sister, um, I, I forget what kind of cancer she had, but, you know, she's in remission and in high school, and, you know, she's recovered. But they wanted to figure out a way to give back. So they walked the halls of the hospital, you know, handing out gifts and telling people, you know, you're not alone. And it was cool because it - since it was the two sisters, you know, they were acknowledging all of the siblings. And so they really went out of their way to make my daughter feel special. And so they invited her to make that video. And so I think just their example started to inspire her to kind of vocalize and produce something for that content that they were requesting. But also I met another family where the older daughter, I think she's aged thirteen, she articulated what her experience has been like on a podcast, um, what her experience has been like with her brother having cancer. And so I listened to it with my daughters so I could show her, hey, here's another girl who's been through, you know, something similar, and this is how she feels. And, you know, it really resonated a lot with my daughter. I think, you know, both meeting a cancer sibling in person and also hearing the interview. I think once she felt like she wasn't alone, then she felt a little more freedom to express herself. And I was really surprised that her biggest thing is feeling left out of the process. Um, and so that's why she mentioned the anger, because she was angry that she was the last one to find out, the diagnosis. And the reality was, is: we were trying to figure out how to explain it. Right? And I told her that too, that, you know, this was a shock for us. And we're learning as we go. And we thought we did the best thing. But I did apologize saying that I'm sorry that you were the last to know, um, and that you weren't there when we got the diagnosis, just to validate her feelings. But. Yeah, that was hard. 

Kayla 22:35

 Yeah, well, that's really cool, though, that she could see those other examples of kids closer to her age to who've - who've gone through it. Yeah, I know that the children's hospital that Ella was treated had a pediatric oncology resource team. They call it PORT, and they do a lot of sibling-focused events too. So all of that to say, you know, check out your local children's hospital if you're listening to this. Odds are I bet that someone, somewhere could connect you with other siblings, you know, um, and kind of loop them into the - into the scenario. It is tricky, um, because the siblings are still trying to live their own lives and they're not at the hospital as much as the patient, but…

Trish 23:23

Yeah, ironically, when it ended up being something that really upset her, is the hospital restricted visitors because of cold and flu season. And so when my son was going to the hospital for treatment, um, she's not allowed to come visit. And that was really upsetting for her. And it was really hard because instinctively I wanted to, you know, go to the front desk and say, hey, you know, insist that she come. But at the same time, I know why they're doing it. And I don't want to risk, you know, any, um, exposure to, to, you know, a floor of immunocompromised children. So we played by the rules. But I know that was a big pain for her.

Kayla 24:17

Yeah. That sort of leads me to the last question I had, which is just how their dynamic - your son and daughter’s relationship - has changed or stayed the same. Because I know Ella, I don't know if you want to speak to this at all, but we were, you know, college-age. But I definitely felt like sometimes we felt farther apart. And then sometimes we were really close. But there was a lot of bumps there. And sometimes, you know, maybe more angst than usual. So I'm just curious how that's been watching your kids together navigate that sort of in their separate, like their relationship separate from you. 

Trish 24:58

It’s a good question. I think what's really difficult is at this age, they were already kind of naturally starting to kind of live their own lives and schedule based on their friends and activities. So they were starting to grow more distant in general. But with this happening, um, I think something really interesting when, when this happens to your family is you, you start to see everyone's coping styles come out that maybe you didn't know that they had those kind of thing. And so my son, I think, is withdrawing a lot because I think he's just trying to process, um, and that kind of results in a bigger gap. And that I think my daughter really struggles with. And as a parent, I think it's really hard because on one hand…You know, I don't want to throw myself in the mix and, you know, force them to be together. But on the other hand, it's like, well, should I? You know. Um, it's hard to know as a parent, the sibling dynamic, if you should facilitate it or if you should let it unfold the way it's going to. And so right now it's a little difficult because my son needs a lot of space, which is understandable. And I think her reaction is to, you know, seek his attention more. So there's kind of that funny push pull, which, you know, happens with siblings without cancer also. But I think it's hard with them being different genders and yeah the age they're at. The other thing that's really hard is our big family bonding activity was traveling. And so before this happened we had taken our kids - they had been to over 25 countries all over the world. 

Ella 27:00

Wow. 

Trish 27:02

And so you know, we have these like busy lives of all these activities. But then we would take a week in February and all go somewhere together. And so it's like we have that week to explore museums and restaurants and enjoy our time wherever. And you know, that was almost like our little family retreat. And right now we haven’t traveled at all during treatment. And right now we're starting to ask our team about how can we do maybe like road trips safely. But I think it's been… even I feel a bit of the distance and losing that… You know, for us that was like a tradition, right? Um, so we're trying to kind of figure out how to still make it happen, but of course, keep it safe. 

Kayla 27:56

I mean, yeah, those ways that we bond. Yeah. When that gets disrupted, that's really tricky. Well, as a listener, you know we always try to educate and/or empathize. So I really appreciate you doing both by sharing so much of your story. Is there anything you wanted to share that we didn't cover yet for this episode?

 

Trish 28:20

 Not really. I just wanted to thank you guys. I really appreciate hearing about your thoughts and experiences. Um, I really appreciate that you're both so vulnerable and open, and it's so funny how we go through this, and you really do feel like you're alone, right? Like there are a lot of moments… Maybe you're in the hallway of the hospital and you're just crying. Um, or you're driving and you're crying thinking about things. Yeah, but to hear both of your experiences kind of be so similar to what, you know, the listener is feeling. It's just so powerful. So I just thank you both so much.

 

Ella 29:09

 Thank you, Trish.

 

Kayla 29:10

 Aw, yeah. Well, thanks so much for your time, Trish. It was so nice to meet you face to face.

 

Trish 29:16

 Yeah of course. It is so great to meet you both. 

Ella 29:19

Thank you so much.

Kayla Crum
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