In this episode, we talk with caregiver Sylvia Chunn of Nashville, who shares her journey alongside her husband David through his diagnosis of AML, a stem cell transplant, and the ongoing challenges of GVHD. Sylvia walks us through their intense timeline, from David’s emergency diagnosis in January 2024 to his transplant in July and their extended stay in Atlanta, away from home and their teenage children, until February 2025. Her husband’s transplant was successful in its purpose, but complications like heart failure and GVHD turned their lives upside down.
We explore the caregiving experience through Sylvia’s eyes, especially navigating chronic GVHD symptoms that affect David’s gut, eyes, mouth, joints, and skin. She explains how their lives are now filled with medical appointments, medications, and managing side effects from treatment. Sylvia describes her role as a blend of cheerleader and drill sergeant, ensuring medications are taken and appointments kept, while also offering emotional support.
Sylvia emphasizes the importance of self-care during the process. With limited financial flexibility, she found peace in simple things like reading through a Facebook book club, daily personal devotions, and leaning on her faith. Exercise helped at times, although maintaining consistency was difficult. She openly shares that she sought mental health support, including therapy and medication, to deal with stress, guilt, and isolation.
The conversation turns to how this journey has affected intimacy and family dynamics. Sylvia candidly reflects on how medical realities changed their physical relationship but ultimately brought them emotionally closer. Time spent together—reading, reminiscing, and watching shows—became a new form of connection. They rediscovered old routines from their early marriage and built a stronger bond through shared trials.
Sylvia also shares how their children, especially their youngest teenage twins and their adult daughter in medical school, responded to the crisis. She notes how her kids matured emotionally, became more empathetic, and stepped up in unexpected ways.
We close with Sylvia offering heartfelt advice to other caregivers: keep showing up, stay grateful, and never forget the power of hope. She reminds us that while this journey is incredibly difficult, it's also filled with unexpected moments of closeness, resilience, and love.
Thanks to our Season 19 sponsors, Incyte and Sanofi.
00:40 - Introduction to Sylvia Chunn
01:15 - David’s AML Diagnosis and Transplant Decision
02:10 - Living Away from Home for Treatment
03:40 - Navigating Chronic GVHD
05:30 - Caregiver Role and Daily Routine
06:40 - Self-Care and Coping Strategies
08:20 - Mental Health Support for Caregivers
09:40 - Isolation and Infection Risks
11:55 - Impact on Intimacy and Marriage
16:20 - Parenting Through the Crisis
18:40 - Reflections on Family Growth
20:40 - Final Thoughts and Advice to Caregivers
Peggy Burkhard (00:40):
Hello, everyone. So, today we welcome a caregiver, Sylvia Chun of Nashville. Sylvia has been the caregiver to her husband David and will share how they have tackled survivorship and specifically, GVHD.
Welcome, Sylvia.
Sylvia Chun (00:56):
Hi, Peggy. Thank you so much for having me. I appreciate this opportunity and being able to just tell our story. I hope that it gives other caregivers hope and inspiration.
Peggy Burkhard (01:08):
Well, I'm sure it will. So, let's get right to it. Sylvia, please share your story with us. Tell us about your husband's transplant to start.
Sylvia Chun (01:15):
He had his transplant in July of 2024. He was diagnosed with AML in January of 2024, and that was a whirlwind all in itself. He had an emergency room visit, and then basically, just never left the hospital.
But we decided to move forward with transplant because the chemotherapy sessions for AML, while they were effective, we weren't able to complete all the rounds that were required because his counts weren't recovering quick enough.
So, our doctor put us in touch with the Blood and Marrow Transplant Group of Atlanta (Georgia), and our original doctor was Dr. Morris (he’s since retired), but we met with him. He went over all the good, the bad, and the ugly, and we decided to move forward. Our son (our oldest son) was my husband's donor.
Peggy Burkhard (02:08):
Really? Okay.
Sylvia Chun (02:10):
Yeah. And the process did everything it was supposed to do. I'm sure you've heard other people say, I mean, it was long, it was intense and it was scary. We live in Nashville, Tennessee, and he had his transplant in Atlanta. So, we were away from home for about seven months. We moved down there, the very end of June of 2024, and we came back February of 2025.
We have, I wouldn't say young children, but we have teenagers. Our youngest are juniors in high school, so we missed their first semester of their sophomore year. They're in their junior year now. So, that was very difficult trying to parent from far away. But I told my husband, I was also very grateful because his transplant was not easy, and I think it would've been very frightening for them if they had seen him during that time.
Peggy Burkhard (03:08):
Interesting.
Sylvia Chun (03:09):
Yeah. There were times we weren't sure that he was going to make it to be frank, but he did and we're just so grateful.
Peggy Burkhard (03:19):
Oh, so you missed holidays too. Were you guys away? Did you have a good support system for your kids?
Sylvia Chun (03:26):
We did. My parents moved here to Nashville, and so they helped out. And we don't have any other close family here in Nashville but some of our church members also helped out with our children, which was very helpful.
Peggy Burkhard (03:40):
Oh, it really takes a village.
Sylvia Chun (03:42):
Yeah, it does. It really does.
Peggy Burkhard (03:44):
I'm glad you had that support. So, we're going to dig in about your role as the caregiver, specifically caring for someone that is struggling with graft-versus-host disease. If you could tell us more about that.
Sylvia Chun (03:57):
So, my husband's graft-versus-hosts disease, first, he had acute graft-versus-host, and then once we hit that a hundred-day mark, he still was exhibiting symptoms, so it turned into chronic graft-versus-hosts disease. He mostly struggles with gut GVHD, but he also has dry eyes, dry mouth, it also affects his skin and his joints.
So, as you can imagine, we have lots of doctor's appointments, we follow up with the transplant doctor, but we also see — as a result of the transplant and the chemo, my husband also went into heart failure, so we also see a cardiologist. We see a gastrologist for his gut issues, we see an endocrinologist because a lot of the medications that he's on have resulted in diabetes.
So, our lives are full of doctor's appointments, full of medications, and I think the biggest role I play as caregiver to my husband aside from going back and forth to doctor's visits and organizing medication, is really just being a cheerleader and sometimes a drill sergeant.
Peggy Burkhard (05:03):
That's a good combo. I recognize that, and I appreciate that. I think it takes a blend of both to really get through transplant. We know it's tough stuff, and then you're trying to raise your family at the same time. What did you do for yourself? Tell us about some self-care that you might've had to get through it.
Sylvia Chun (05:25):
So, I love reading, and I sort of joined a Facebook book club (laughs) which is really nice. We read the books, and then we comment on them online. There's a moderator and she will post questions, we have an outline that we follow for what chapters we read on certain days, and then sometimes, we actually have author visits.
So, they'll set up zoom calls, and we get to ask the authors of the books questions and things like that. That has really been helpful. It's sort of like an escape and the reading is also needed quiet time.
I also rely a lot on my faith. Just taking those few moments each day to have my personal devotion and worship has been really helpful, and then spending time with friends. A lot of the things that I used to do for self-care before this experience when my husband was working, I’m not able to do anymore.
Like the things people normally think about, like getting your nails done or going to get a massage, something like that. Our financial situation has changed, so those options aren't available, but just the small things that you can do for yourself to give yourself some time.
Peggy Burkhard (06:42):
Oh, I really like that, Sylvia. I think it's such an important consideration. And just to be creative. I'm a very big reader, and I did not know about these Facebook groups, so I'm going to check it out. I'm excited about that. Thank you for sharing that.
What about the stress of it all? And I know that the reading is a nice escape; do you find exercise helps? Anything like that?
Sylvia Chun (07:05):
I do find that exercise helps. I will say I have not been able to keep up with it the way that I like, it's like I go through phases. Sometimes, for a month or two, I'm really good about the exercise and then I go through a down where I'm not really doing much of anything. But I can say that I definitely feel better when I am exercising regularly. So, yeah, I would say that's definitely important.
Peggy Burkhard (07:31):
I think you just described about 90% of the human population (laughs). You're not alone in that (laughs), and you're trying, that's the important thing.
Sylvia Chun (07:41):
And you mentioned like the stress, exercise is really good for that. Not just because when my husband was first diagnosed and throughout the transplant process, I stress ate, and I put on over 30 pounds. So, exercising, doing it consistently would be awesome (chuckles).
Peggy Burkhard (08:02):
Yes. And it's just something to remember and strive for.
I'm going to put you on the spot. Did you need any kind of mental health help as a caregiver? And you do not have to answer if you don't want to.
Sylvia Chun (08:16):
No, I'm fine with it. “Yes,” is the answer, I definitely did. It was just so scary, honestly, and then I was away from my children, and I had a lot of guilt about that. Then there's the added stress, just the financial stress, just everything, it can be really overwhelming. And so, I saw a talk therapist and also a psychiatrist.
Peggy Burkhard (08:46):
Good.
Sylvia Chun (08:47):
When my husband was first diagnosed with AML, they started him on an antidepressant just as part of the therapy. They said they did that for all of their patients. But I also am on an antidepressant and I think it's very, very helpful (laughs).
Peggy Burkhard (09:06):
Well, that's good to hear.
Sylvia Chun (09:07):
Honestly, I can't imagine what our life would be like day-to-day if we weren't getting that extra help.
Peggy Burkhard (09:14):
It's so important and I'm so glad we're talking about it. I think more and more people are realizing it makes such a difference for both of you. And what about the isolation? This is pretty recent for you guys.
We know what COVID did, but has it been tough with the isolation? You had a nice summer to be probably outside more, but now it's getting chillier again, are you concerned about isolating?
Sylvia Chun (09:40):
You know, I think it was more difficult in the beginning, and honestly, I think it was more difficult for my husband than it was for me. Because of his immune system, we had to be extra careful. But I say it was harder for him because he's more of a social butterfly than I am. I'm more of an introvert.
And so, before he got sick, we used to host a lot. We had people over for dinners, we had people over for game night, we had people over for parties, and we're not able to do any of that anymore. And so, it is very difficult.
Going to Atlanta, we live in Nashville, so a lot of our friends and stuff are here in Nashville. We did have people who would come down to visit occasionally. And we have some friends who are in the Atlanta area, but we're still dealing with the isolation because he still is not able to be around large groups of people.
Just last week, when we had our visit was … what's the word? Oh, my goodness, the word just left me but his A1C was low. So, he's in that area where it's really easy for him to pick up things. As a matter of fact, he's had a few hospital stays for diseases that other people just don't get. He was in the hospital for over a week for campylobacter, and we don't know how he picked that up. I'd never even heard of it before until he got it.
Peggy Burkhard (11:13):
Yeah. What is that?
Sylvia Chun (11:15):
A bacteria. I just know it's a gram-negative bacterium that can cause a virus in people with low immune—
Peggy Burkhard (11:23):
Compromised immune system.
Sylvia Chun (11:24):
Yeah, exactly. So, he got that. He also ended up with salmonella once that put him in the hospital for a while.
Peggy Burkhard (11:32):
Oh gosh.
Sylvia Chun (11:34):
So, we just have to be careful.
Peggy Burkhard (11:37):
Well, it sounds like you're a great caregiver too, and you're keeping track of him (laughs), keeping him in line.
Sylvia Chun (11:44):
I’m really trying.
Peggy Burkhard (11:47):
Oh, I'm sure.
Sylvia Chun (11:47):
Some days he's grateful, some days he hates it.
Peggy Burkhard (11:50):
(Laughs) I bet, I bet. Sylvia, what about how intimacy has been affected for you guys?
Sylvia Chun (11:57):
It has.
Peggy Burkhard (11:58):
You feel like talking about that?
Sylvia Chun (11:59):
Sure. Being sick, being in the hospital, as a couple, you are not able to have the same type of relationship that you have when everything is normal and you're in the privacy of your own home. And the majority of our lives were spent in the hospital, especially during the first part when he was first diagnosed, and then after the transplant.
After the transplant, it was an outpatient transplant. They only planned on him staying five days, but he was literally discharged and had to go back the next morning. And then he stayed in the hospital for a little over two months. So, all of that affects it.
And then just our situation (I'm sure others have this same situation), but they don't feel like themselves when they come out. Their bodies have changed, they've lost a lot of weight, or my husband went to both extremes. Because of the heart failure, he was huge in the hospital. But then once they started getting all the fluid off of him, we saw how much weight he had lost.
My husband loves to work out. He's not able to do that because of the fatigue; the fatigue is really, really difficult for them. So, even when you get back to home, what would be your baseline, your normal, things don't always go back to what they were and that affects intimacy.
Whether it's just what your body is like now and you're not accustomed to that, or you just don't feel like yourself so there's a mental block, and sometimes physically things don't work the way they used to. So, we just find other ways to be close to each other. And this whole process, the transplant and the diagnosis, I feel like has brought us closer. We've just been in each other's orbit 24/7 pretty much.
You know, reading together, watching shows together — I mean, we're literally together all the time, but we feel like it's brought us closer and it's made our marriage stronger just because we've had so many trials to weather together. And sometimes, it's literally just the two of us. So, just snuggling up and feeling close and making sure to love on each other is important.
Peggy Burkhard (13:54):
I love this, this is fabulous. We're also going to have an episode in this season with a healthcare professional regarding intimacy issues, so this will compliment that nicely.
You made me think of one of my favorite survivors saying that during the whole process, he and his wife, the time they spent just sitting around and even reminiscing about life, their early marriage, and just talking about things that they don't think they ever would've had the chance to talk about had this not happened.
And of course, we're not saying that anybody would want this, but it definitely is a silver lining, I'm guessing.
Sylvia Chun (14:31):
It is. It's so true. And things that we used to do when we were first married, 20 something years ago that we sort of stopped, we've picked up again, like playing games together and that kind of thing. Because I mean, we just have so much time and the other things aren't an option.
Like we can't go to the movies anymore really because the movies are full of lots of other people who might have whatever kind of germs. And our kids, they still go in and out. They're not as affected as much, but yeah, it does, it brings you closer together in ways that you wouldn't have thought.
Peggy Burkhard (15:07):
I've gotten … now, we're going to the movies is so crazy expensive. A month later, you can stream it anyway (laughs).
Sylvia Chun (15:14):
It’s true, it’s true, yeah, yeah. And we look forward to when things hit streaming platforms, like the movie is coming out in the theater, like what day is it going to be?
Peggy Burkhard (15:24):
Oh, I know, we do the same thing (laughs).
Sylvia Chun (15:26):
Yeah, we do.
Peggy Burkhard (15:29):
Sylvia, what advice would you give (I'm going to talk about your children for a minute) having been through it? Is there anything you could think of that you would tell caregivers that was just kind of unexpected as far as taking care of your children at the same time?
Sylvia Chun (15:44):
I think it was unexpected for my children, not for us. But like when they first found out. So, our twins are 16 and they were 15 when we first left. And they're teenagers, so parents, they feel like, oh, the rules, oh, all of this stuff. So, they knew they were going to miss us, but they also felt like there was going to be an element of freedom that they were going to have, that they wouldn't have had if we were home.
And just how empathetic they became when they would see us, how emotional they were. And they never saw my husband when he was really, really bad. They might talk on the phone, talk to me, they might see me over FaceTime, but they didn't see my husband, actually see him until he was able to come back to the Hope Lodge, and he could sit up. They could still see the physical changes, and they would talk to me about it sometimes, like about his weight, or how his hair was gone, that kind of stuff.
But I was surprised just by how much they emotionally matured during that time. I think they really stepped up when we were leaving. They knew it was serious, but maybe not how serious. And kids, they can be sort of inherently selfish.
So, it was just, well, we're going to get to do this or we're going to get to do that, and then it became talking to them — well, what can we do here? What can we do? They wanted to know how they could be supportive, which was really nice.
Peggy Burkhard (17:08):
Oh, well, you did something right because it sounds like you have two great kids (laughs). That's awesome.
Sylvia Chun (17:14):
We have four kids total.
Peggy Burkhard (17:16):
Oh, you have four? Okay.
Sylvia Chun (17:18):
We have four, yeah.
Peggy Burkhard (17:19):
Are the twins the youngest?
Sylvia Chun (17:21):
The twins are the youngest, yeah. They're the youngest.
Peggy Burkhard (17:24):
Okay. I'm sorry, I missed that.
Sylvia Chun (17:26):
That's okay. Our oldest son is the one who was my husband's donor.
Peggy Burkhard (17:30):
That's right. Okay.
Sylvia Chun (17:33):
Yes. And then we have an older daughter. She's actually in medical school in California. She just turned 26. I think actually, out of all of our children, it was the most difficult for her because she wasn't here, and that just made things much more stressful for her.
Peggy Burkhard (17:51):
Plus, she was trying to be in medical school and not be there, that's hard.
Sylvia Chun (17:56):
She was very worried, very concerned. Me and my husband joke now that once we're retirement age, we're not going to have any freedom because she harasses us now: “Are you guys doing this? Are you doing this? Have you done this?”
And when she comes home to visit, she'll come to our room to check on us before she goes to bed. And I mean, she's so ridiculous. She doesn't want us to have any candles burning (laughs), she calls us if there's an issue with the weather. I mean, she's just super protective.
Peggy Burkhard (18:29):
Aww, your worrier (laughs).
Sylvia Chun (18:31):
Yeah. She's over the top for sure.
Peggy Burkhard (18:33):
Yeah, my daughter's the same way, I get it.
[Laughter]
It's love.
Sylvia Chun (18:39):
It is, it is sweet.
Peggy Burkhard (18:42):
Oh, Sylvia, I have so enjoyed talking to you. Is there anything else that you want to cover here? Any other tips or tricks or ideas?
Sylvia Chun (18:53):
I just want to tell people, hang in there. When I was saying my biggest job is being a cheerleader and a drill sergeant, it’s true because I don't think I'll ever understand from my husband's perspective what this was like for him.
But occasionally, I just tell him, “Thank you.” Because they have a choice. They don't have to have this transplant and it's very difficult, it's very hard. And he used to say sometimes if he had to go back and do it again, he wouldn't. And it would make me so upset that he would say that, but I'm just so thankful.
I'm thankful that he decided to go through with it, I'm thankful that he's still here, and I'm grateful that I get to be his cheerleader, and I get to even be his drill sergeant, even though he hates it. He has so many medications he has to take every day, as I'm sure you know lots of other people do too, are on this journey, and he doesn't always want to.
So, I just remind him that we are so grateful that he's doing this, not just for himself, but also for us, for me and for our kids. So, yeah, just hanging there, it's not easy, but support each other. He can tell when things really get to me and he cares for me too in his own way (laughs), being encouraging and supportive.
So, yeah, just hang on to each other, keep loving each other, and I'm sure nobody takes this time for granted anymore especially when you're faced with a situation like this. But yeah, just appreciate every day and stay focused on the positive, stay focused on the future, what the future can bring. We're still hopeful every day that these symptoms are going to resolve, and that they'll dissipate and he'll be able to go back to work, and so just living in gratitude, it's important.
Peggy Burkhard (20:36):
I love all of this. Thank you so much, Sylvia.
Sylvia Chun (20:39):
I just appreciate the opportunity to be able to share. So, I'm thankful to you and to the National Bone Marrow Transplant LINK. I just appreciate this opportunity.