Relationships and Social Life During Treatment

Narrator (00:02)
A child's diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child's diagnosis and treatment. St. Jude Children's Research Hospital brings you Caregivers SHARE, a St. Jude podcast. SHARE stands for support, honor, advise, reflect, encourage. In this series, you'll hear stories and insights directly from the experiences of St. Jude families and care providers. 

Clay Culp (00:37)
Socialization and relationships outside the clinical setting are very important after the diagnosis of cancer or another serious illness. I'm Clay Culp, a senior social worker at St. Jude Children's Research Hospital. In this episode of Caregivers SHARE, I'm talking with caregiver Polly Fulford, her son Taze Fulford, and psychologist Dr. Elyse Heidelberg about friendships and dating for teens and young adults experiencing serious illness. Elyse, can you introduce yourself and tell a little bit about why this topic is important? 

Dr. Elyse Heidelberg (01:08) 
Sure. Hi, I'm Dr. Elyse Heidelberg. I'm a clinical psychologist and assistant member in the Department of Psychology and Biobehavioral Sciences at St. Jude. Having a healthy social life is important for teens and young adults as they grow up. When someone is diagnosed with cancer or another serious illness, it can be harder to connect with others and affect everyday life. Even with these challenges, many young people keep up with friends and social activities, though some may find it more difficult than others. Having strong social support from a partner, family, or friends, and the care team can make a big difference. Teens and young adults who feel supported tend to have better social lives, feel less anxious and depressed, and enjoy a higher quality of life. 

Clay (01:52) 
Thanks, Elyse. Taze and Polly, could you introduce yourselves and tell us a little bit about your journey? 

Taze Fulford (01:58) 
Yeah. My name is Taze Fulford. I'm 20 years old from Starkville, Mississippi. I'm currently a sophomore biomedical engineering major at Mississippi State. And I was diagnosed with Hodgkin lymphoma about halfway through my freshman year. So I went through about five to six months of chemotherapy treatment where I was living at home and commuting to go receive these treatments. And obviously I've been thrown into a different place than living on campus with all of my friends before. But I'm really excited to be here today and talk about all this with y'all, especially with Dr. Elyse Heidelberg, who was my clinical psychologist through the whole process. 

Clay (02:44) 
Yeah, we're excited to have both of you here. Polly, could you tell us a little bit about yourself and the rest of the family? 

Polly Fulford (02:53) 
Sure. I'm Polly Fulford. I'm Taze's mom. His father, Taze. We are parents to three boys, and we are very thankful to share our experience. It's been quite a journey and a lot to learn, but we're thankful for the care and support we've received through the journey. 

Clay (03:13) 
Yeah, thank you. Thank you both for being here. Before we get too deep into this conversation, I'd like to have you set the stage for this a little bit, Elyse. We know that wanting to keep an active social life and date are normal parts of being a teen or young adult, but this can be difficult while going through treatment. I'm thinking about dealing with body changes, identity changes, emotional changes. Could you talk about this and how caregivers might support young adults as they make friends, date, go through things like that? 

Elyse (03:48) 
Absolutely. That's a great question. And I'd first like to acknowledge that while, yes, maintaining friendships, social life, and dating are very typical for teens and young adults, these are rarely easy, even in the absence of a cancer experience. So especially when we think about teens and young adults navigating these issues and experiences with their caregiver along their side, and being diagnosed with cancer as a young person really further complicates this experience.  

On treatment, one of the most helpful things that patients and caregivers can do as they navigate these experiences together is prioritize open communication about what each one is hopeful for and what they're worried about. I really find that considering hopes and worries gives us a good idea of what's most important to us and can help us begin to think about how we balance multiple priorities. For example, spending time with friends or going on dates while also being mindful of medical recommendations when immunocompromised. 

Clay (04:48) 
Thanks, Elyse. So we're going to dig into so much of this. But Taze, I want to hear your perspective. Talk about your life socially, what was going on with you before the diagnosis. 

Taze (04:60) 
Yeah, so obviously I just basically got in my first year of college. Everyone always says freshman year is the best year. You're going to have the most fun. I was super excited, looking forward to everything. I joined a fraternity, made a bunch of friends, was enjoying myself the whole time. And then over the break, I got a diagnosis of Hodgkin lymphoma, and it just felt like everything I knew just turned upside down. I had to go move back home. I was away from all of my friends I had just made. I just felt like I was missing out on a lot of things with them. Luckily, living in Starkville, I wasn't too far away, so they would come and visit me every now and then. I would go get lunch with them, or they would bring me food, stuff like that. I still got to see my girlfriend. 

Clay (05:48) 
Thank you for sharing that, Taze. You had a lot going on. Thankfully, you weren't going through it alone. You had a lot of support. Of course, you had your mom, Polly. So, Polly, as a mom, how did you navigate what to let Taze do socially? Was there ever a time when your goals and hopes differed? 

Polly (06:11) 
Yes. From the beginning, you know, per doctor recommendations in trying to protect his health, we were very, his father and I were very, very strict about being social and being in social settings. And this was definitely a conflict for Taze and his dad and I. So we finally kind of worked through, you know, each situation that arose. We learned that we could ask the doctors what their opinion was. We had our opinion. Taze had his opinion. And then we would let the doctors give their opinion. And Taze seemed to really respond and respect what they felt like was the best thing for him to do, whether, you know, it was okay to go to a Mississippi State basketball game with a full house. But he would respond to the recommendations of the doctor. So we were able to work through each situation that came up. But definitely throughout the whole journey, we had conflicts arise. As we saw that he was going to be okay, that it was not healthy to stay home all the time, we couldn't keep him protected in a bubble. We needed to allow him to go out and be around his peers. We eased off and allowed him to do more with his friends. 

Clay (07:40) 
Yeah, thank you for sharing that, Polly. And I want to hear your perspective on this, Taze. I mean, even as I asked the question, what did your mom let you do? I can imagine you're like, hey, I'm grown. I'm a man. You know, you're into your adulthood. So what was your perspective on that aspect and navigating that with your parents as a young man? 

Taze (08:02) 
Yeah, so it was pretty hard at first. I kind of knew where I was going end up, not being able to do everything I wanted to throughout the whole process. At the very beginning, it was easier them being strict on me. I wasn't feeling very well. I had RSV at the very start. So I kind of needed to stay home anyways. And all of it was very brand new. So I wasn't sure how comfortable I'd be doing everything, how well I would feel going out. So it just got easier to gauge how I would feel throughout the rest of the treatment as things went along. But yeah, there were definitely a lot of times we butted heads about things that I wanted to do that maybe weren't the best idea. 

I remember looking forward to going to the beach over spring break, freshmen, Destin, everybody's going, hanging out. And I wanted to go really bad with all my buddies and I got told no. So I had to go ask the doctors about it, but eventually my white blood cell count was too low for me to go there safely. So, things like that just kind of happened that where they would come up, I would be frustrated about it. But you just keep moving on. You take advantage of all the time you do feel good. Go spend time with your friends and stuff like that. 

Clay (09:27) 
Yeah, you all are sharing beautifully about how you compromise and navigated this. And Elyse I want to get your perspective on this as a psychologist and how you've seen families navigate these types of issues. 

Elyse (09:42) 
Well, this is definitely something that I see come up often in my work with teens and young adults, especially as they're navigating treatment and these types of social decisions with their caregivers. I've had many conversations with patients who have their sights set on senior trips, prom, date parties, often a very lengthy list of social activities that can really offer lots of normalcy and opportunities for social support that are so important. For the patient, this is really helpful. And then for the caregivers, it often leaves them feeling very worried about their child's medical status or if they might get sick at one of these events. 

As with so many things, this is a great space to work towards balance and if needed, sometimes even compromise. I often start by encouraging my patients to consider what they're hopeful for and what aspects of these social events are most meaningful. This gives us good information about what makes a particular event important.  

And then just as Taze and Polly have described, I typically recommend that the patient talk to their medical team about their plans and what is possible. This may include consideration of where they are in treatment, labs, or how they're feeling physically, in addition to recommendations that may range from yes, we think it's okay for you to do this without restrictions, or we think it's better to sit this one out and everything else in between. And that's really where we see some of those compromises coming in. Perhaps it's okay to go to a larger social event if it's outside or wearing a mask, depending on where each patient is in their treatment.  

This is why identifying what is meaningful and important is so helpful, because then we have something to work toward, even if it looks differently than it would have in the absence of the cancer experience. 

Clay (11:39) 
One of the things that I love about this conversation is this aspect of talking to the doctors and letting them have their say, because I think that helps take you as the mom, as the parent, out of that role of being the kind of rule master and allow you to just be that supportive presence. Did you all find that to be the case that helped with that? 

Taze (12:07) 
It definitely did. It's like I had just gotten into college. I'm living with a roommate away from my parents for the first time. I'm completely independent for the most part. So it's definitely an interesting feeling being sent back home to live with your parents again, which I enjoyed every moment of it. It meant a lot being with them and it was good to spend even more time with them.  

But there's definitely a little bit of feeling of rebellion because I had been on my own for a time and then now I'm going back and having to follow rules. So I think talking to the doctor about things definitely became the middle ground, a good way to settle things that we were maybe arguing over whether I should be able to go do this or not do this. 

Through my whole experience, I feel like I was pretty well informed about everything I was going through. Anytime I had any questions about any treatments I had to do or some medicine I was taking, I always got answers about what the side effects might be or what it's supposed to be helping me with.  

The whole plan, I had the process laid out to me, so I was pretty well informed about how long everything was going to take and that it was just situational on whether or not I may have to go through radiation at the end or if I had to take more steroids or something like that. But yeah, I felt like I was pretty well informed the whole time. And all of my questions I had were answered by them. They did a really good job. 

Clay (13:50) 
Yeah, I'm really glad that you all had a care team that fit well for you. And I could imagine that the doctors, sometimes they're not thinking about something like a beach trip that might be on your mind that you might be expecting to do. So I'm curious, Elyse, if you can speak to that part about how families, how patients can talk to their medical team about those social life aspects, those real world aspects that might be really important to a patient. 

Elyse (14:27) 
Sure. I want to start by acknowledging that it's completely understandable and oftentimes expected that the conversations within the hospital or within clinics are going to focus on medical details. And Clay, what I think you're asking about is how can patients ask the question like, okay, and what does this mean for me as someone who is a teenager and approaching graduation? Or, what does it mean for me as someone who is just starting my college career or maybe starting my career? And those are incredibly important questions to ask. 

And I think, Taze, you mentioned one of the things that you would really want from your medical team looking back is just kind of knowing what to expect for how this would impact you day to day. Even if they couldn't tell you exactly, it might just be that we don't know how this is going to impact you day to day. And what we suggest for our patients is to really notice how you're feeling each day and decide what you can do on that day. And we're glad to help you navigate those decisions when it comes to things that you want to be able to do. 

And one of the things that I really encourage, especially for my teen and young adult patients, is, if they feel like it's important, to advocate for some time alone with your medical clinicians. There may be questions that patients have that they want to talk about and they don't know who to talk about them with. Or they might not want to talk about them in front of their parents. And again, this isn't a bad thing. It's a completely developmentally appropriate stage of being an older teenager or a young adult in this space—wondering how your diagnosis and how your treatment are going to impact you across all domains, socially, academically, your vocation, your career.  

All of these aspects are incredibly important. And I always try to encourage patients to ask these questions because, as we acknowledged early on, sometimes these are not the subjects that are front of mind when we're in the middle of a medical discussion. And it's something that is front of mind for so many of our patients. 

Clay (16:46) 
That's such a good point. I mean, of course, I can imagine. I mean, if I was going through something like that, you would have questions like, can I have an adult beverage? I mean, what can I do with my partner that's safe based on the medications that I'm on or based on infection risk? 

Elyse (17:06) 
I'm so glad you mentioned that. As a psychologist, I've mentioned that I work with many of our patients who are teenagers and young adults. And teens and young adults many times find themselves kind of in between these two models of care. They're not pediatric patients. They are in a very different place in their life than adult patients. 

And that's why I really enjoy working with patients that are in this space, because all of those questions are showing up. And one of the things that I really try to encourage, and I would encourage patients to do the same, is to identify the people on their care team that they can have these conversations with. Because even if it's not the person that knows the answer, having someone on your care team that you're comfortable going to with your questions can really open up the space for the information that you need to be able to do the things that are most important to you. 

Polly (18:06) 
Yes, we had, like he said, he had left for college and we had entered a new time in our relationship with his independence as a college student. Our parenting… he's able to go and do as he pleases at college and doesn't have to check in anymore. Well, we did ask that if he was leaving the state, he would check in. 

But in situations, you know, once we found out about the cancer and he was back home with us, it really, we had not anticipated the difficulty of, you know, we are his parents, but he has this independent piece. So it was definitely something we had to learn to navigate together. 

Clay (18:51) 
Yeah, absolutely. And I think that keyword learn, like it's not something that came up immediately. There can be some trial and error with this. 

Elyse (19:01) 
Absolutely. And I'm just thinking about how, especially as you all are talking, you were so early on into this adjustment process of living independent of your parents. So you're figuring out what your own limits are and kind of where those exist and how you navigate outside of your parents' home. 

You all are doing the same thing with him living outside of your home. And that adjustment in itself is one that is a challenge and one that many teens, most teens and young adults are going through, moving towards independence and living their lives somewhat apart from their parents. And that's not a bad thing. That's incredibly developmentally appropriate, but it is an adjustment. 

It is something that teens, young adults, and their parents are learning. And right in the middle of learning this, you all get kind of pulled back into something, a really stressful experience, a cancer diagnosis. So I'm really appreciative of you all kind of sharing what that process was like, because it sounds like it was a lot of back and forth in the middle of a process that was already challenging. 

Clay (20:04) 
Absolutely. And then on top of that, you have, aside from your parents, just dealing with your actual social life. So can you talk a little bit about just with your friends, your girlfriend, all of that stuff? What was that like once you got this diagnosis? 

Taze (20:19) 
Yeah, so I immediately received a lot of support from everybody, which really made me feel a lot better about the whole process. I had a lot of people praying for me and thinking about me. I remember one of the very first things I was allowed to go to, my fraternity put on a philanthropy event where they actually raised money for St. Jude. And so a bunch of my friends all shaved their heads. I think it was about 40 guys all shaved their heads with me. And it was amazing. It was amazing. 

Clay (20:54) 
Yeah, it sounds like you were really surrounded by a huge support system and people that really cared about you, that were not even going through this themselves, but they were in solidarity with you. 

Taze (21:08) 
Yeah, definitely. And another thing is this whole experience really has brought me closer with a lot of people. There's a lot of people I've really started spending more time with and hanging out with. It just made me really more appreciative of the people I had surrounding me, especially my girlfriend. I've gotten even closer with her through all this experience. And she was there for me through the whole thing, and it made a huge difference going through it all.  

I remember I would go just hang out with her, get food. She would leave to go to class, and I would just sit there watching TV and stuff and just waiting on her to come back. But it definitely was a lot of help having people there for you and a lot of support. 

Clay (21:56) 
Yeah. Quality time, although you didn't ask for your life to be stopped that way, but you had a lot of time on your hands and that actually allowed you to connect more deeply in some ways.  

So I'm curious about the girlfriend piece. It sounds like that has ended up really going well, but I could imagine there being questions, concerns, worries about how things would go in your social life or your dating life. Can you give our listeners any perspective on that side of it? 

Taze (22:31) 
Yeah, so it's a very stressful experience. Obviously, you just got diagnosed with cancer and everyone, every time, everything you've heard about it, like I had a buddy that went through cancer the year before me. I just remember him being stuck at home, not being able to really go out and do very much, but maybe like one time a week, we would hardly really ever see him, have to go visit him. So that was my mindset going into it. But you really just got to make the best of it. Just having a positive mindset. When people do come visit you, it's an amazing feeling. When you do feel well enough to go do stuff, you go do it and spend time with those people and keep those connections strong. Because you know those people will always be there for you. 

Clay (23:16)
Right, right. Yeah, I'm so thankful for you that you had such a robust support system. And I also know that it's different for everybody navigating this. And I'm curious, Elyse, if you can share some about some of the challenges that some teens, young adults may experience socially. 

Elyse (23:37) 
Absolutely. So I am so appreciative of Taze sharing his experience and join you in your gratitude that you've had so many people show up for you in supportive ways. One of the experiences that I do hear sometimes, especially when we're talking about maintaining connections with peers who do not share a cancer experience, is a little bit of disappointment in the way that friends may not be showing up the way that the patient hopes they would. And when I think about this, one of the ways that I usually approach this with my patients is really encouraging them to think about their friendships and who they find as strong sources of support, those people that they feel like they can have honest conversations with, and thinking about what's important to them in those relationships. And then from there, asking the question, is this someone that I can talk to about this?  

Most people don't know what to do when someone they care for is diagnosed with cancer. And this is certainly true for younger people like teens and young adults. So I find that it can oftentimes be helpful to share what you need, what you want from those relationships. And that can give your support system around you an idea of how to show up for you, even in a time when they may be feeling uncertain of how to do so.  

The flip side of that is that many patients talk about how people maybe that they weren't as close with before being diagnosed really show up and remain present for them throughout this experience. And it's incredibly important to notice those things and really lean into those people who are showing up or who are remaining present, who are a strong source of support. Because as you've described, that's just instrumental in supporting your overall well-being as you navigate treatment. 

Clay (25:35) 
Taze, on that note, I'm curious if there are any things that you would point to as things that people can do. If maybe somebody is listening to this and I don't know how to support my friend. Maybe it's a parent thinking, man… I've actually had parents say friends of the patient go to the parent and say, hey, what can we do? What are some things that helped? 

Taze (26:01) 
Yeah. So one of the biggest things that probably helped for me was a few of my buddies would just come over at lunch every now and then, bring me food. We'd sit down and talk, maybe watch some TV or something. It's just about spending quality time with that person when they're feeling well enough to do stuff. And just continue reaching out and offering to be a person that they can talk to about their problems. Even if you may not fully understand what they're going through or can't get a grasp of it, it always helps to have someone that you can talk to about everything. 

Clay (26:34) 
As I was hearing you talk, I was thinking about just the importance of normality. Just when you were like, yeah, just come over, bring some food, like hang out. I was like, oh yeah, I've been in college. I remember that. Like, that would be great. So it sounds like just being normal and feeling normal was really important. 

Taze (26:53) 
Yes, definitely. Because you don't really feel any different when you're diagnosed with cancer. Obviously, you're going through this treatment. Your looks may change or something like that. You may not be feeling well anymore, but you still feel like the same person. You're still the same person. So you just really don't want to be treated any differently for what you're going through. And I think that's also a very important part of… a way to support a person is treating them like they're not any different. 

Clay (27:21) 
And Polly, I kind of saw you nod and smile at that. 

Polly (27:25) 
Yes, we were always so appreciative of his friend group reaching out, just texting him, calling him, checking in when they couldn't come visit. Definitely the visits when they could, and including him. There were a lot of things he missed out on second semester. So just the times that he could join, we were very thankful that the friends were there for him. And we know he was very lucky to have those friendships in place. 

Clay (28:00) 
Right. Yeah. I've seen that it can be really important to even be given the opportunity to say no. Like even if friends may think, hey, you might not be able to come, but still inviting you so that it's up to you to be able to make that call. 

Taze (28:16) 
Yeah, it definitely makes a difference just reaching out and you never know how the person may be feeling that day. Because I remember it changed for me basically every day, how I would wake up feeling. It could change throughout the day how I feel, but it is important to continue reaching out to them. Even if you may think, oh, well, they're not going to want to come do this. They still want to feel included on things. 

Clay (28:40) 
And that makes me think about social media because you, all you have to do is open your phone and see what everybody else is doing and all the parties, all the hangouts, the games. So I'm curious, Elyse. Can you set the stage a little bit on that, talk about this social media piece? 

Elyse (28:59) 
Sure. Social media is a present part of everyone's lives these days, and especially teens and young adults. And the literature on this topic is growing, really working to understand how teens and young adults use social media, what some of the disadvantages of that are, also advantages. As with many things, there's two sides to it. And with that growing literature, there's lots of people interested in how teens and young adults utilize social media within their cancer experience. And what we're starting to see just based on the shared experiences and the lived experiences of young patients is, I think, what we know already, which is that everyone uses social media differently. And that for teens and young adults who are entering into a cancer experience, many times their use of social media shifts with that.  

So some may be using it as a point of connection to maintain those connections with friends to know what's going on outside of the hospital and the clinic. Whereas others may feel themselves kind of pulling back from that, finding it to be more of a reminder of the things that they might be missing out on that day or over the course of a semester.  

We're also seeing that teens and young adults often use social media to learn about other people's cancer experiences. So finding that connection, maybe even with someone that they don't know personally, but has a shared experience is something that young people often use social media for and find helpful.  

And then there's also the part about kind of sharing updates. And I think this is really where individual preferences come into play. And then also where an interesting dynamic between the patient and their caregivers can come into play is when we think about using social media as a means of providing personal updates. So certainly, it can be one of the most efficient ways to share broadly about how one is doing in treatment. But one of the things that's really important is to consider your own kind of boundaries and limits in that, what you're comfortable sharing with a broad audience.  

And I usually encourage patients to think about what you share with your inner circle is likely to be quite different than what you share with acquaintances and then what you share with a broad audience, like what might be on social media. And in addition to encourage patients to think about this in their own social media use, is to have an open conversation with their parent or their caregiver who may also be using social media for updates about status and how things are progressing with treatment. And making sure that both parties are in agreement with how it's being used and really importantly, what is being shared. 

Clay (31:57) 
Yeah. Can you all share a little bit about how you all navigated that part of it? 

Taze (32:02) 
Yeah, so I mainly used social media just for communication with my friends, them checking on me or me giving them updates on how I was doing, where I was at in the process, what treatment I was on.  

But one thing that has changed is, so I used to just post more frequently on Instagram, let’s say, but now I’ve kind of dialed back how much I post. I wanted to make a post when I completed treatment just to give other people encouragement, to show them what I got through and that they could get through that too.  

So the other updates, it was an interesting dynamic with my parents. Sometimes they would take some awful photos of me and try to post it online that I wouldn’t want them to. 

Clay (32:55) 
I see your reaction there, Polly. Yeah, but it’s real. It’s hard. 

Polly (32:60) 
It is. It is. And we needed to check with Taze about what was being posted. There were a couple of times his dad posted some pictures that I think his dad thought were funny, but he maybe should have checked, maybe.  

So we did try to not post too much. Of course, it was a wonderful tool to communicate what was going on. The communication piece was overwhelming as we went through the process, keeping everyone updated. We did need to make sure that Taze was okay with what was being posted. But there were a couple of times some pictures did get posted. I guess you weren’t happy with. I’m sorry. 

Clay (33:44) 
As a parent, you’re going to make some mistakes through this process. And I appreciate you all being willing to actually share about those. And I don’t know if we’ll ever know how many embarrassing photos were not posted thanks to you all and your vulnerability on this podcast. So thank you. 

Polly (34:03) 
Absolutely. 

Clay (34:04) 
Yeah, Elyse, it seemed like there’s maybe something that you wanted to share about that too. 

Elyse (34:08) 
I was just noticing how both of you were talking about the communication that comes back through social media. And so it being a very efficient way to share updates with people who are concerned about how you’re doing and how grateful you all were for that throughout this experience and how instrumental it was in supporting your coping and that it can get overwhelming at times.  

And that is something that I talk a lot about in sessions when we’re discussing the use of social media as a tool, is really checking in on aspects of it that are helpful and the aspects of it that may feel overwhelming and how to set limits for ourselves and for others. 

And so sometimes, you know, I’ll encourage patients to turn off comments if they don’t want to try to get into that back and forth conversation, or they might put something if they’re creating a post, as you were talking about, Taze, like there’s something you wanted to share and you also knew that there was an audience there for it. It was important to put that out there. But sometimes people will put in their caption that they’re not going to respond, like they’re busy navigating treatment and are appreciative of all of the support.  

But I think it’s incredibly important in social media, that can be so limitless at times, to think about for each individual personally what are the limits that need to be set to keep this something that is helpful and hopefully less something that is more overwhelming. 

Clay (35:42) 
You know, we’ve talked a lot about your relationships with folks that are not in the cancer world. But I’m curious too, did you make connections with people that were in treatment? And what was that like? 

Taze (35:59) 
So I wasn’t very heavily involved with any of the child life communities here where I would be connected, or the young life communities. But I do remember on the very last day of my treatment, I was stopped by a young girl. And I remember I had probably a two-hour conversation with her, just telling her everything I had gone through. She was sharing stuff. And it was very meaningful.  

Even with the big age gap like that, it meant a lot being able to share my experience with someone that’s going through something similar and that she felt comfortable enough to share with me what she was going through. And it really, it was a hard conversation to have, but it really gave me a lot of hope. And hopefully it gave her a lot of hope too.  

I also, so like I mentioned before, I have a good friend that had cancer a year prior to me. And he was a major source that I could rely on for what he went through. He had already experienced everything beforehand. So if I had any questions, I could always go to him. What I could do if I was feeling a certain way, like if I was super nauseous, what else might help other than the medication I’m on, or stuff like that. So comparing what symptoms he had to the symptoms I did. So it really helped me a lot having someone that I could talk to regularly that had experienced everything before. 

Clay (37:32) 
Yeah, and you found what works for you. And sometimes it’s those longstanding relationships over time, but it can also just be that one moment that you have with somebody that makes a huge impact on both of your lives.  

So Polly, help us understand what that’s like as a parent when your child is diagnosed with a life-threatening illness. And I mean, you already have worries as a parent, they’re off to college, but then you have this on top of it. And you know that there can be medical concerns. There can be infection concerns. Can you help us kind of get in the mindset of a parent or caregiver that’s seeing their child go through that, the worries, the fears? 

Polly (38:16) 
Sure. In the beginning, the fears were very overwhelming. Once we received the diagnosis, we were able to embrace what we were going to be going through with him. You tried not to let yourself get too out of control with what does his future look like?  

He was on a very strict plan academically with school, and was this cancer diagnosis going to stop his ability to move through his programming? What was it going to do to him academically? What would his friendships look like through school? Would he miss out on things and lose the friendships? Was he not going to be able to get back into the routine of what he had built the first semester of college? We worried about that.  

We worried about what… he had just met his girlfriend the first semester of school. So we had not really gotten to spend much time with Taze that first semester and not gotten to spend much time with her. And we weren’t sure where things would go with that relationship, which we were very fortunate and thankful for how things have worked out. She has been just a gem and so supportive.  

But as a parent, you just want everything to be good for your child and happy. And you realize sometimes in life you can’t do that. So that was very overwhelming as a parent. But we realized that we were going to be able to make the best of every day. We were going to take it day by day. We were going to keep things positive. And we were going to do the best we could with what we were given.  

And we were very fortunate with his diagnosis and treatment that he is given a future. And he’s going to be able to finish school and stay on track and fulfill his dreams. So we’re very thankful. 

Clay (40:19) 
For a moment, I want to talk about, in a sense, the social aspect for you, the connections for you, Polly, as a mom, as a parent. Were there moments of connection that you found with others in this journey? 

Polly (40:34) 
In the beginning, the same child that Taze was talking about that he was friends with that was diagnosed, I reached out to his mother and she was a complete rock for our family. Their family was for us with their experience, what they had been through. I could text her the craziest questions at any time and she would respond.  

And she would also understand if I was days later responding because trying to work full time and we have three children, keeping everything going.  

My husband was a rock. We were able to share the responsibilities. So I was very thankful to have him to rely on. And all the concerns that would come up, we could talk through. I was very thankful to have him and the friend groups that I have, that everybody was so supportive. So we were very thankful to have people in our lives that could help us through each day. 

Clay (41:41) 
Yeah. Even though we’re focusing on Taze’s relationships and social life, I always think it’s important to tip our hat to that caregiver piece because you all are so important in keeping your strength and your well-being. Your mental health, your emotional health, all of that is incredibly important. It’s too hard to do this all alone. 

Polly (42:08) 
It is. We’re thankful for help. 

Clay (42:11) 
We talked a lot about the importance of the care team, the support that you all received from the hospital. And I’m wondering though, is there anything else that you wish your family would have been told or that your care team or support team could have discussed with you that would have helped? 

Taze (42:35) 
I’d say the biggest thing that I probably could have been told was that you never know what’s going to end up happening. You never know how you’re going to feel. I kind of could assume that and they hinted at that to me, but it really was day by day going through everything. No day was the same. I would maybe be having aching feelings in my arms, or the next day I would be nauseous. And it’s really just making sure that you’re prepared to handle those situations that come and that you keep a positive mindset. It’s like, I’m going to be all right. I just have to get through this. And I have stuff that’ll be able to help me get through it. Yeah, it really is just taking it day by day, getting through it. 

Clay (43:21) 
So part of that was also about expectations, right. Like you were expecting, okay, in two months, I want to be able to go to this event. And that didn’t always happen. 

Taze (43:30) 
Yes, yes, definitely. You never know what you will be able to go to. So I mentioned earlier, I wasn’t able to go to spring break. But there were so many other things I was able to do. I got to go to that philanthropy event with all of my friends. My girlfriend had tickets to a Megan Maroney concert in Athens. So we got to go see that together. And then all the small things too, just spending time with your friends, one-on-one quality time or hanging out in groups, going and grabbing a meal together, just all of it. You never know how you’re feeling, so you just really take advantage of when you do feel good. And you can’t let yourself get down when you aren’t able to go do everything that you want to be able to do. 

Clay (44:21) 
Yeah, there’s this flexibility that I hear in you and this sense of appreciation for the good moments. But not holding too tightly to those plans because something like cancer just shakes everything up and you just don’t know what’s going to happen.  

Is there anything else that you all would like to share? Anything else you’d like to share with our listeners about this experience? 

Taze (44:55) 
I’d say going through treatment like this, the biggest thing that will help you is having a positive outlook on everything. Not letting your mind run through all the possibilities of what could happen and where your future might lay, but just staying focused on taking it day by day, like I said earlier, appreciating every moment.  

I’m here today, I’m doing good. I feel good. So I’m going to go hang out with my friends. Having that positive attitude and outlook on things makes a huge difference on getting through everything. 

Clay (45:36) 
We hear that so often, take it day by day, right, Elyse? Probably because there's some truth in that, some wisdom in taking it day by day. 

Elyse (45:45) 
Absolutely. And so much of what you've described today, Taze, is that you were really... intentional in noticing where you were at each stage along the way. And on the days that you needed to rest, you did that. And on the days that you felt well enough to go get a meal or go to a concert, you did that as well.  

And one of the things that I'm also noticing you say a lot is how your outlook really shaped your experience throughout. And one of the things that I think is really important to highlight is that that positive outlook hasn't been in the absence of feeling disappointed when things didn't work out the way you hoped they would, like your spring break trip to Destin. That was very disappointing. We can hear that as you're talking about it. And noticing that, acknowledging that you were disappointed didn't change your approach the next time something came up and you did feel well enough to do it. And that's an incredible way to think about taking things day by day, and how your outlook really shapes how you're able to cope and navigate through this experience. 

Clay (46:59) 
Well, I think that's a beautiful place to end it. Thank you, Polly, Taze, and Elyse for your time, intention, and vulnerability today. And thank you to our listeners. 

Narrator (47:12) 
Thank you for listening to Caregivers SHARE, a podcast lovingly brought to you by Patient Family-Centered Care and Psychosocial Services at St. Jude Children’s Research Hospital. Please subscribe, leave a comment, and share this podcast with others who may benefit from this support. Visit stjude.org/caregivers-share for show notes and educational links related to each episode. 

This podcast is for informational purposes only and does not render medical advice or professional services. This podcast does not establish a patient relationship between the listener and St. Jude Children's Research Hospital. The opinions expressed belong to the caregivers. Your personal experience may differ. If you have questions about individual health concerns, psychosocial needs, or specific treatment options, please discuss them with your child's medical team.    

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