Late Effects of 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. 

Mark Brown (00:38) 
When treatment ends, we might expect life to return to normal, but for many families, life after cancer is anything but normal. While treatment has an end date, the late effects of serious illness are more undefined. I'm Mark Brown, Director of Spiritual Care at St. Jude Children's Research Hospital. In this episode of Caregivers SHARE, I'm talking with caregiver Carla Wyatt and social work manager Jeanette Lavecchia about dealing with the unexpected long-term effects of serious illness. Jeanette, can you introduce yourself and tell us a little about why this topic is important? 

Jeanette Lavecchia (01:16) 
Hi, I'm Jeanette Lavecchia. I'm a social work manager and clinician in the Survivorship Clinic at St. Jude. And this topic is important to me because prior to my current role, I worked with newly diagnosed patients and families undergoing treatment and recognized that after treatment, the journey continued and I wanted to be able to help them continue to navigate the next chapters beyond treatment and those challenges.  

So my goal along with the medical team is to educate and support them. And developing skills to tackle those challenges and advocate for themselves. 

Mark (01:54) 
Thank you. Carla, share a little bit of your story with us as you introduce yourself. 

Carla Wyatt (01:59) 
My name is Carla Wyatt. My son Brett was diagnosed with T-cell ALL in January of 2021 at the age of 13. ALL being acute lymphoblastic leukemia. When a child is diagnosed with cancer, it doesn't just impact the patient. It impacts the entire family. I'm here today to share part of our experience, which includes my husband, Chris, and my older son, Bond. 

Mark (02:29) 
Thank you. Appreciate that. As we get into the topic, Carla, I wonder if you wouldn't mind sharing a little bit in more detail about exactly what Brett's journey looked like from diagnosis and treatment to the present day. 

Carla (02:47) 
When Brett was first diagnosed, everything happened very quickly. He had been to the doctor and we were told that they thought he had a virus. We were sent home and a week later, he was still not better. I, at that time, called the pediatrician and said, at this point, he should be feeling better. I think we need to bring him in. I made an appointment to take him back to the doctor that day. And when I went to check on Brett, I could tell we needed to make that a more urgent visit.  

When I went to get Brett ready to go to the doctor, he was very lethargic. And I had told him to get dressed. He told me he just wanted to lay down. I just need to lay down. At that point, I could tell something was wrong and it was progressing quickly. I helped Brett to get dressed, and when he went to stand up, he said, my feet feel numb.  

At that point, the panic started to set in of, we've got to get to the doctor now. We made it through the house. By the time we got to the kitchen, his feet were dragging. And we pushed through, made it to the car, and he actually only made it to the floorboard. It was progressing so fast.  

I told him at the time, whatever it is that you can do, do it. I'm going to count to three, and we're going to get you in this seat and we're getting to the hospital now.  

Somehow, adrenaline kicks in and I was able to get him into the seat and we started heading straight to the emergency room. When we arrived at the emergency room, they immediately took his vitals and I can remember the nurse saying, he's really scaring me. My thought at the time was, if this is scaring you, think about me as his parent.  

They took us back and they very quickly did a blood test and a CT scan. When the doctor came back in. I still remember the look on his face. He looked as though he was telling me, this is the end.  

He told me that Brett was going to be transferred to a children's hospital and that we were going to be heading that way as quickly as possible. We waited for the ambulance to arrive, and they took him on the hour and a half trip. The ambulance service did not allow me to ride with Brett in the ambulance. They had told me that I would be able to, so I had turned down rides and said, no, I'll be able to ride with them. Anybody that's coming can just meet us there. But when the service arrived, they said, you are not allowed to ride with us.  

I left before the ambulance did, and they never passed me. They had said they wanted me to leave ahead of them so that I wouldn't be speeding behind them, but they never passed me, and I knew something had to have gone wrong.  

I was in the emergency room for about 15 minutes by myself, waiting for him to arrive, when they called to say, we didn't want to scare you, but things took a turn after you left. We had to intubate him, and we didn't want you to freak out when you saw him coming through the doors.  

He arrived quickly after that. There were at least 20 people in the room surrounding him and feverishly working, and some communicating with me. We had two oncologists that arrived to tell me, we think that Brett has leukemia. We're not sure which kind, but we think that's what's happening.  

A neurosurgeon came in and said, he needs to have neurosurgery. But he can't because his blood won't clot properly because of his platelets right now. His white blood cell count was 865,000. They did not expect him to survive. Shortly after we had arrived there, a doctor told me that I need you to be prepared for him to not make it through the night. That's not something you can be prepared for. 

Mark (07:29) 
I can't imagine any parent ever being prepared to hear something like that. Carla, what did his treatment plan look like? He spent a lot of time in the hospital, I understand, receiving treatment. 

Carla (07:45) 
Brett spent 19 days in the ICU. And the first part of that, he was in a coma for the first seven days. He was already beginning to receive treatment at that point. His treatment over the course of his time in the hospital changed drastically. Brett experienced multiple relapses. So we would have a plan in place and feel like you had a schedule and this is when the next thing will happen. And it was laid out how many weeks. And frequently the doctor would come in and say, okay, we've got to reassess this. We're starting over with a new plan. 

Mark (08:30) 
Right. Talk a little bit, if you don't mind, Carla, about the changes that you experienced with Brett over the course of his treatment and after his treatment was over. How did things change for him? 

Carla (08:44) 
Things changed drastically for him. Brett lost his vision because of the leukemia. And he had surgeries that restored his vision. But when he had a relapse, it took that vision away again. He currently is legally blind. He has some vision in one eye with no peripheral vision at all.  

His life completely changed; from the time of diagnosis and what was happening before that point to where he is now is a different world. He now has, aside from the vision loss, he also has short-term memory loss because of the brain bleed that caused damage to the memory center of his brain. That is one of the biggest challenges that he faces. He also has mobility issues from that brain injury that he is still dealing with now. 

Mark (09:46) 
Thank you, Carla. Jeanette, Carla has shared a little bit about some of the major changes that can happen during and following treatment for a serious illness. I wonder if you could help us understand the difference between those two things.  

What things might be considered side effects of treatment and what things might we call late effects of treatment. Well, actually, tell us what late effects are. 

Jeanette (10:14) 
So side effects, I think of in terms of something that happens suddenly in response to something, and it's usually temporary. For example, if you have a cold and take cold medicine, it can make you drowsy. But once the medicine wears off, you're fine.  

Late effects are different because they come about due to your illness or the treatments that you received. It doesn't happen necessarily suddenly. It happens over a period of time, maybe even many years later, it occurs. And those things are not temporary. They're more permanent or chronic. So some examples of that would be in response to treatment sometimes people can have damage to organs, fertility concerns, or even secondary cancers. 

Mark (11:07) 
Okay. Thank you. I wonder, Carla, what it was like for you as a mom to sort of start at a place of great hope and expectation, you know, that he would have the very best outcome possible. And then you finish treatment and you're finding that life has become very different for him. As you mentioned, his loss of vision, short-term memory issues. How have you evolved in how you respond to the difference in the things you hoped for initially, but you still have hope now, but it looks different, perhaps. Would you say something about that? 

Carla (11:55) 
Our experience with hope and expectations has definitely changed over time. In the very beginning of Brett's journey, because of how abruptly it started, our hope in the very beginning was survival. From that point forward, it really gave us a different perspective. It's difficult to see your child lose things that they were able to do before or to feel like they're missing out on their childhood. But when you realize that you are close to not having them with you, you gain a different perspective on those things. Yes, there are challenges. Yes, it is hard. But we're thankful to be working through those together. 

Mark (12:46) 
Since Brett finished his treatment, have there been other late effects that surprised you or that you didn't anticipate? 

Carla (12:56) 
I don't know that I would say it didn't surprise me just because of the amount of chemotherapy and radiation that Brett received. I think that we are realistic that there are going to be challenges that continue to arise. He currently has low bone density. So that's one of the things that we have been working through. It is a constant thought as a caregiver to be watching for signs of other things that may arise. 

Mark (13:33) 
Right, right. Jeanette, you probably have come across a lot of patients with different kinds of late effects in addition to the specific ones that Brett has experienced. Tell us a little bit about what else you've seen with the patients and families you work with. 

Jeanette (13:53) 
Okay. Well, aside from the physical and cognitive impact with learning and memory and things that you described, Carla, we also sometimes see a psychological or social impact. Children that have been out of school and not able to do the things they would normally do with their peers sometimes have difficulty getting back into the routine and relating to their peers. Sometimes people struggle with anxiety or depression because, of course, they've experienced losses and are experiencing challenges. And across different ages and stages of life, we tend to see different things pop up just depending on what's going on. But our goal, of course, in survivorship is to help educate families, help them anticipate things and develop coping skills to deal with all of those. 

Mark (14:55) 
Sure, sure. Thank you. So, Carla, I wonder, I mean, these late effects have a big impact, as you mentioned at the top of our time together, on not just the young person, but on the parents and on the whole family system. And I wonder if you could talk a little bit about what that's looked like, particularly for your family. How have you all had to accommodate the changes and navigate this experience with Brett? 

Carla (15:28) 
One of the things that we did the year after Brett's transplant, he was isolated for that next year, we actually moved. And it's interesting you brought up the social side of things, because at times we felt like a social experiment. Moving to a new city where no one knew who we were was a challenge in itself.  

Where we were from, everyone knew who he was and what he had been through. And they had been following his story and praying for him. They saw him grow up. They knew how he was before. And now you're in this new city and when people look at him, they don't see who he was before or what he's been through. They see him as he is now.  

One of the things, because of the radiation, one of the things that he has dealt with is hair loss. It's challenging to be a teenager at a new school and not have hair. He also has a white cane and mobility challenges. It can be difficult in the beginning for people to accept kids that are different. Thankfully, Brett has a great personality and is so funny and connects with people so well that that has definitely served him well in making these new relationships. But it was hard.

Mark (17:05) 
Sure. That good sense of humor and great personality, that probably was with him at the start of this and carried him through the whole experience, I imagine. 

Carla (17:15) 
Brett's personality definitely helped him throughout his entire journey. Brett experienced short-term memory loss, but the good part of that was his default is happy. So he may not remember what happened five minutes before, but he was happy. The doctors would come in and say, oh, Brett, how was your night? And he would say, oh, it was great. And I would look at the doctor like, oh, wow. Good for him. He does not remember any of the things that happened. Right. His humor served him well throughout as well. And his doctors and nurses, everyone was able to enjoy that with him. 

Mark (18:03) 
When you're at home and with the family, how have other members of the family sort of made accommodations to make sure that things go as well as they can on a daily basis? 

Carla (18:13) 
We all made a lot of adjustments. I resigned from my job when it became clear that I needed to, to become his full-time caregiver. That required his dad to continue on, even in those difficult times. When we were in the hospital for that extended time, we were inpatient over 200 days. Once Brett stabilized, my husband went back to work. I was at the hospital with Brett through the week. My husband would come. And we would trade out and I would go home to be with our other son at home. My son, Bond, described it as feeling like his parents were divorced, but they just got along really well. 

Mark (18:58) 
Wow. 

Carla (18:60) 
That was really telling because it shows the separation that happens. A lot of people going through this situation are long distance and it is a struggle to give the attention to the siblings that you need to, especially when times are very critical. It's even more difficult because you feel guilty leaving the child that's sick, but your other child also needs you. We all had to make a lot of adjustments during that time. 

Mark (19:34) 
Along with making those adjustments, I can imagine that there are a lot of times when you had to put yourself out there as an advocate for Brett. And also for the needs of your family and for Bond. But specifically, you had to take a lead in trying to make sure Brett had the tools that he needed to adjust to everything that was happening. Tell me, how did you find your voice as an advocate? 

Carla (20:07) 
There are so many challenges that come along with having new disabilities, having a cancer diagnosis, dealing with the medical side, dealing with those short-term and long-term effects. And managing those. I think it is so important for caregivers to encourage each other and be supportive of each other. It's important to share resources. I know I learned a lot from other parents sharing the things that they had learned. 

Mark (20:41) 
I'm sure parents are a unique kind of resource for other parents. Jeanette, I wonder if you could tell us a little bit about the experience of other families, in addition to Carla's family, how do they find that they need to adjust and advocate for different kinds of needs, perhaps? 

Jeanette (21:05) 
I think it's very common that the entire family is impacted, the siblings, other parents. It's hard to be separated, and all people have to adjust, like Carla said. Many families have a hard time when they leave the security of their hospital, where they felt protected and supported by all their medical team, going home and adjusting.  

Sometimes families worry that other doctors outside their hospital won't understand or know how to take care of them. And they have anxieties about things that may come up. And so we try very hard to empower our patients and families with knowledge because we feel like knowledge is power. And when they have information that helps them optimize their coping and know what they can do to help their own health, then I feel like that's very beneficial.  

You know, over the years, we've had more and more survivors, thankfully, that we've been able to study. And over decades now, they've been studying survivors. So we have more information where we can share and educate and hopefully help people cope and adjust. 

Mark (22:33) 
That's a tremendous resource to have that legacy information to help newer families. Carla, I'm wondering, so since the time that treatment is over and you all are at home, what are the things that sort of keep you and Brett going? What are the things you lean into to sort of give a sense of joy in life and maybe take away a little bit of the anxiety about late effects? 

Carla (23:07) 
One of the things that I have learned through this is that kids need to feel that sense of adventure. They need something that challenges them, something that excites them. Most recently for Brett, that's been indoor rock climbing. He has really taken a love to going, and indoor rock climbing is difficult for anyone. For Brett, with his limited vision, he has a drop foot on his right foot. And it's very challenging, but he loves it. He loves that it's hard.  

One time recently, he was climbing the wall and someone said, you know, sometimes you're halfway up and you realize, like, I'm going to come back to this. Like, this is really hard. I'm going to come back to it and I'm going to try again next time. They were trying to give him an out to giving up. And I laughed and looked over and said, oh, you don't know Brett very well yet. It took him about 20 minutes to pass that particular part of the wall, but he was not coming down until he finished. I think that's a great example of even how he handled his treatment, the illness, the challenges that he's facing. 

Mark (24:33) 
Persistence. 

Carla (24:34) 
He has a determined spirit. And it has served him well then, and it serves him well now. 

Mark (24:43) 
I wonder if there were other things that, even during treatment, that maybe were really important to you all as you didn't have the opportunity to climb a wall, but you were in a hospital a lot and you found joy and pleasure in other ways, I imagine. 

Carla (24:59) 
Definitely. Brett really leaned into music during his time in the hospital. During his early days in the hospital, he could barely hold his head up. So rock climbing was definitely not on the agenda. 

Mark (25:13) 
Right. 

Carla (25:14) 
Brett loved music. He's always loved music. But losing his vision and being in a situation where he was not able to be mobile, I think he learned to appreciate it even more.  

Brett was struggling with his short-term memory loss, but he was not struggling with lyrics to songs. He could remember so many songs. And at music therapy, when he was asked, what song do you want to sing today? They were always surprised that he could come up with a different song every time.  

Frequently, his music therapist would say, oh, I don't know that one. She would look it up and play it the best she could, and Brett would sing along. He really enjoyed also sharing his love of music and teaching other people to appreciate other artists that they didn't already know. 

Mark (26:10) 
That's wonderful. Yeah, a lot of times families find it's helpful to, you know, have a community of people that they lean into and for support also. And you all moved in the middle of that. Did that sort of remove you from a community that you had leaned on? 

Carla (26:32) 
Moving at the end of Brett's isolation did take us away from that community. Brett had spent his whole life growing up with that group of friends and people and our church. So it was definitely a challenge moving somewhere else and starting to build a new community. 

Mark (26:55) 
Right. 

Carla (26:57) 
The people that we left were really still with us and still reached out. They still care. But it is challenging to move away from that. Our faith also gave us a sense of community with people that we hadn't even met. There were people following Brett's story as I shared the updates online that we had never met and probably never will for a lot of those. But they were praying for Brett during that time. They were sending encouraging messages. They were invested in Brett's recovery. 

Mark (27:38) 
That helps to know that, doesn't it? I can imagine. 

Carla (27:41) 
It really does. We had a prayer map that was a map of the United States. And so first we filled in each day. We were adding states that we would fill in as people would send in. Hey, I'm praying from California. Or Minnesota, wherever it was that they were from. And then we started adding countries, different countries all around the map. So one day, one of Brett's doctors came in and said, wow, that's where I'm from and pointed to Nigeria on the map. 

Mark (28:14) 
Wow. Jeanette, Carla, what did I not ask that you would like to talk about? 

Jeanette (28:22) 
As Carla was talking about the importance of support, it made me think about how important that is for young people and parents. For young people going to camp, being around other survivors who understand and can relate, I think is very important not to feel so isolated and alone. 

Mark (28:44) 
That's like Brett's adventurous spirit. Yes. You know, get out and do something. 

Jeanette (28:48) 
Yes, and I think also for caregivers, relying on the supports, like you said, of the other parents, you can feel a sense of camaraderie and support that I think other people maybe don't quite understand what you're going through, but others around you that have shared that journey understand. And I would encourage people to draw on those supports from their community, their faith, their hospital. Their family, everyone. 

Carla (29:20) 
Brett has attended a camp the last couple of years that is for children who have survived childhood cancer. It has been a great experience for him to meet and connect with other kids who can relate to a lot of the things that he went through.  

It's nice for him to be able to go to camp and no one thinks anything about the fact that he doesn't have hair. They don't care. They're able to just have fun and really connect with each other on a different level. 

Jeanette (29:59) 
That's great. 

Mark (29:59) 
That's wonderful. 

Jeanette (30:01) 
I think that makes me think about, in my work with survivors through the years, many people talk about how difficult the journey is and that a lot of people don't understand. But from that, they feel like some good things can come from that as well.  

Oftentimes, survivors will share that they feel like they're more mature or appreciate their life more than the average person. They don't take things for granted. Oftentimes, they'll say they have more compassion or empathy for other people and have a different perspective because when tough things come along, they've already beaten cancer. So that gives them the perspective of no matter how hard things are, I can do hard things. I've already beaten this.  

And sometimes even their career choice is related. They want to help other people or go into the medical field. And so I think that's important, when they can, to find meaning and some positive that comes from a really hard experience, maybe that shaped who they are. A lot of times they'll say, cancer wasn't easy. I wouldn't wish that on anybody, but I wouldn't change it because that's what made me who I am. 

Mark (31:21) 
Carla, was there something else you wish I had asked about? Something else to share?