The Importance of Sleep

Episode 2: The Importance of Sleep

Sleep can be hard for both the patient and family when a child is sick. Sleep problems are common in children with serious illnesses. Trouble sleeping could be caused by treatment, medicines, or the effects of illness. But getting sleep is very important for healing and recovery.

In this episode, Erica Sirrine and Valerie Crabtree talk with parents Andy and Caitlin about how they managed to get sleep when their son Max (now age 5) was going through treatment for Langerhans cell histiocytosis (LCH). Andy and Caitlin explain how they reached a compromise on sleeping arrangements at home. Valerie emphasizes that there is no playbook to figuring out sleep for your family. The group talks about the pressure to do things perfectly, and the joy of a simple nighttime song. Listeners will hear expert advice on routine, screen time, using melatonin as sleep aid, and co-sleeping.

A special thank you to our host, Erica Sirrine, director of social work at St. Jude; our expert Valerie Crabtree, vice president of Psychosocial Services at St. Jude and a pediatric psychologist who specializes in sleep; and parents Andy and Caitlin.

This episode was recorded April 24, 2025.

Learn more about Max’s diagnosis of Langerhans cell histiocytosis (LCH) on St. Jude Care & Treatment.

Read about one patient’s sleep success story on the Together blog.

St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode Transcript

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. 

Erica Sirrine, PhD (00:38) 
Sleep is important all the time, especially when a child is sick. But unfortunately, treatment can often disrupt sleep for a patient and their adult caregivers. I'm Erica Sirrine, the Director of Social Work at St. Jude Children's Research Hospital. I have the privilege of hosting this episode of Caregivers SHARE. 

Today, I'm talking with caregivers Caitlin and Andy about how they managed sleep problems while their son Max was undergoing treatment for a serious illness. We're also joined by sleep expert Dr. Valerie Crabtree. Valerie, can you tell our audience a little bit about yourself? 

Valerie Crabtree, PhD (01:14) 
Sure. I'm Valerie Crabtree. I am Vice President of Psychosocial Services at St. Jude and a pediatric psychologist who specializes in sleep. I'm really excited for us to be able to talk about sleep today. I think it is an under-recognized area that is so important, particularly for children who are ill. And I'm looking forward to us talking about how we can help children and their caregivers get better sleep. 

Caitlin and Andy, could you introduce yourselves and tell us a little bit about your journey? 

Andy (01:47) 
Hey, everybody. My name is Andy. 

Caitlin (01:49) 
And I'm Caitlin. 

Andy (01:51) 
And we have an awesome five-year-old son. His name is Max. 

Caitlin (01:55) 
Two years ago, when he was three, he was diagnosed with cancer called Langerhans cell histiocytosis, more commonly known as LCH. He was having headaches and we ended up discovering the cancer. The tumor was located in his head—not in his brain, but behind his eyes and his sphenoid sinus. 

It was putting pressure forward on his head, and he was able to have surgery and then he went through one year of treatment for his cancer, consisting of steroids and chemotherapy. And as of March 2024, he is in remission. 

Erica (02:32) 
Thank you. I'm so glad that you're both here today. Obviously, the topic of this episode is sleep. And so I think it might help us to start by just figuring out why sleep is so important. Valerie, can you tell us a little bit about that? Why does it matter? 

Valerie (02:47) 
Sure. Well, sleep really matters for everyone. It underlies all aspects of our health, both physical and mental. And when we think about a child who is ill and the impact on their sleep—either because of treatments that they're receiving, or being in the hospital, or feeling ill—we know that they are at increased risk of difficulty with their sleep. 

And when children are not sleeping well, it can impact their mood, their learning, their ability to manage the frustrations of the treatments that they're undergoing, their behavior, as well as their physical health. It can impact their experience of pain, how well they recover from an illness, and what their immune function is like. 

We know that sleep impacts the quality of life not only for the child, but also for their caregivers. When children do not sleep well, their caregivers do not sleep well either. 

Erica (03:43) 
Right, and we're going to talk a little bit about that later because there's probably a lot of caregivers listening who are thinking, “Well, I came on here to learn about my child's sleep, but I actually am not sleeping myself.” So we'll talk a little bit and hear more about how the two of you managed that while Max was sick. 

But first, I'm thinking that when a child is receiving treatment for a serious illness, their sleep-related needs are not usually a priority, right? Their treatment is the priority, along with medical appointments and other concerns. So… Caitlin and Andy, can you just share a little bit about how your focus during treatment turned to Max's sleep, and maybe even some things that made sleep challenging for him while he was receiving treatment? 

Andy (04:26) 
So certainly there really was no anticipation of how deep this was going to go as far as the treatment. And when he went through his first couple of chemotherapy treatments with the steroids, he was not sleeping at all. 

Honestly, my sleep was not a concern. It really wasn't. It was about getting him well and getting him to sleep as best as he could. So we compromised as a parent couple, figuring out a plan to alternate sleep with him and by ourselves to get the rest we needed. 

And honestly, it worked out for a period of time. Like I said, my sleep was not a priority. It really wasn't. My priority was making sure that he was getting the rest that he needed. Our bodies need to sleep to heal. 

And honestly, that was my priority for him. I know how important sleep is for Caitlin, though. After about three or four months into things, it transitioned so Caitlin got more sleep while I stayed with Max. 

Caitlin (05:46) 
Right. We both slept in separate beds, and Max would alternate with us for probably the first four months. I did not know that there were resources to help us. Then we connected with Valerie, which helped us come up with a plan that worked out for all three of our needs—Max, Andy, and myself—because Andy and I have different sleep requirements. 

I unfortunately require more sleep. I cannot function on little sleep, and I'm not a good wife or mother when I am exhausted all the time. To be the most present mother for Max, I needed to get more sleep. 

With Valerie, we came up with a solution that worked out for all three of us: Max could sleep, Andy felt comfortable, and I was able to get the sleep I needed to be present for my family. 

Erica (06:42) 
Caitlin, can you tell us a little bit about how you reached the plan for Max, and if you and Andy always agreed or had any concerns about his sleep during his treatment? 

Caitlin (06:54) 
Yes. So Andy and I did not agree on our sleeping arrangement. Andy felt very strongly about co-sleeping, and I felt very strongly about independent sleeping. 

So we saw Valerie. One thing I really want to impress on the listeners is that my biggest concern was that co-sleeping was not developmentally appropriate or developmentally healthy. When I asked Valerie about it, she told us that it is not harmful. 

That brought me such peace of mind—that this stigmatized sleeping habit of co-sleeping at four years old, at the time, was okay for us, and it was okay for Max. Knowing it was not harmful really gave me better sleep because I had peace of mind. 

I think it gave Andy peace of mind too, knowing that he could have this closeness in the evenings and at nighttime with Max, be physically there for him, and still have a successful sleeping schedule and sleeping habit. 

Erica (08:03) 
Yeah. Valerie, can you tell us a little bit about that? Because I think that's a question that comes up a lot for families, especially in a hospital setting. 

Valerie (08:10) 
Yes. What I love about this example is that the two of you disagreed about it, but neither of you were wrong. That happens a lot in parenting—being able to come to a resolution when you don’t necessarily agree on the approach. That’s not an easy or simple task. 

In Max's case, he was four, so we didn’t have to worry about safe sleep. He was at home, not in the hospital. Sometimes, depending on hospital policies or the child’s treatment-related needs, caregivers can’t sleep in the bed with the child. 

But in this case, this was a decision you were making as a family. Different families make different choices. As long as it's healthy for the child, it can be the right thing to do. 

Erica (09:02) 
And so I wonder, Valerie, if you can share a little bit about the uniqueness of each family—and how what might work for one family doesn't necessarily work for another family when it comes to sleep. 

Valerie (09:13) 
Sure. Many times caregivers feel pressure to be the perfect parent. And when a child becomes ill, that pressure ramps up even more. But families differ in how they approach sleep. 

For infants six months of age and younger, they need to sleep on a surface by themselves, not share a bed with an adult—because it isn’t safe and increases risk for SIDS. But in older children, some families want to have their children in the bed with them, others want to have their children sleep independently. Neither is right or wrong. It’s about what works best for that particular child and caregiver. 

It can become challenging if a caregiver wants the child to sleep independently, but the child is resistant, has a more challenging temperament, or is sick and needs nighttime care. That could mean medication, fever monitoring, or pain support. 

A caregiver may want to be physically present out of worry, or simply to share closeness and warmth with their child during a difficult time. 

Erica (10:58) 
I think a lot of times we hear that caregivers feel pressure to do it a certain way—like there is a “right” or “wrong” way. But you’ve told us that actually, a right or wrong way doesn’t exist. 

Caitlin and Andy, can you tell us what ended up working out best for your family to meet not only your own sleep needs, but Max's needs during treatment? 

Andy (11:18) 
Well, I think you're exactly right—there’s no playbook for this. So to the parents listening, you have to understand that you must use the plan that works for you. 

What’s working for us right now is that Max and I are sleeping together. For me, when we started sharing the same bed, it was partly guilt. I couldn’t believe that he was sick, and my way of coping was to stay close to him, hoping it would help him get better. 

And I actually sleep pretty well now, knowing that he’s right next to me and that he’s in remission. Ultimately, we hope to transition him to sleeping on his own, but for now, this works for me and for him. 

What’s really important is that Caitlin is getting her sleep away from this. There’s no “one-size-fits-all.” Do what works for you and your family—what lets everyone get the rest they need and keeps the child comfortable and happy. 

I even joked yesterday about how uplifting it is to wake up with Max poking my face or pinching my nose at six in the morning, even though I’d rather sleep until seven. It raises my spirits knowing he’s happy and right there with me. 

Caitlin (12:57) 
Yes, thank you, Andy. I think there’s stigma around family sleeping arrangements. 

Andy and I have been married 10 years. About a year before Max’s diagnosis, I realized I needed my own bed—I wasn’t sleeping well at all. I’m a very light sleeper, and even with earplugs and white noise, it wasn’t enough. 

Andy, on the other hand, feels extremely close and loves that closeness at night, while I cannot tolerate it for sleep because it wakes me up. 

So it happens to be a really good solution: Andy can have that closeness with our children, and I can get the sleep I need. It works well for us as a couple and as parents. 

Valerie (13:51) 
I’d like to add that many couples choose to sleep in separate beds. People often don’t talk about it because there’s a belief that all couples should sleep in the same bed together. But that doesn’t work for everyone. 

What’s really important is being able to communicate and making the choice intentionally, not just as a reaction to challenges. I think the two of you have done that intentionally, recognizing what works for your family. 

This highlights how crucial open conversations and communication are—particularly in the very difficult times of parenting a child who is ill. 

Erica (14:43) 
Yeah, it sounds like collaboration is key when you’re experiencing something like this. You all are a beautiful example of that—working together to meet your needs and Max’s needs during such a difficult time. 

I wonder, too: some people listening might be thinking, “Okay, but this solution wouldn’t work for me.” Are there other strategies? Valerie, are there practical strategies parents or caregivers can use with children to help them if they're having sleep difficulties? 

Valerie (15:20) 
Absolutely. One thing we haven’t talked about is that you, Caitlin and Andy, could lean on each other. For single caregivers without a partner to trade off with, it’s really important to enlist the help of family or friends. Trusted adults can step in to give respite so that the caregiver can get some rest so that they can be the best parent they can be. 

Consistency is also very important, though challenging when a child is ill. There are changes in schedules, hospital stays, medications, pain, and side effects. But instilling as much consistency as possible can help promote healthier sleep. 

That can mean keeping a consistent bedtime, talking with doctors and nurse practitioners and nurses about timing of nighttime medications, maintaining the same sleep location whenever possible, and creating a bedtime routine—even a very short one—that’s consistent across settings. 

If a child sometimes sleeps at one parent’s home, sometimes at a grandparent’s, or in the hospital, the routine should still look the same. Maybe it’s getting a drink, having a short story, some snuggle time, and lights out. 

Another key point is helping a child distinguish day from night. When kids are sick, that’s harder because they aren’t in their normal routines. Caregivers can open blinds for natural light, let kids outside if possible, keep them active in the daytime, and then dim lights and quiet the house at night. 

In the hospital, this is even more important because it’s even more challenging for kids in terms of losing recognition of when it’s day and night. Caregivers can work with nurses to “bundle care”—grouping vital checks, diaper changes, or other needs together to minimize nighttime interruptions. White noise machines or apps can help mask sounds from hallways or nearby rooms. Even small things like adjusting when the trash is taken out can help protect a child’s nighttime sleep. 

Erica (19:03) 
As I’m hearing you talk about home versus hospital and consistency, I’m thinking about nighttime routines. Caitlin, you shared something with me earlier that I thought listeners might benefit from. Could you share what your nighttime routine with Max looked like? 

Caitlin (19:28) 
Sure. We don’t usually do a bath or reading at bedtime, which I know are typical. A bath excites my kids, and they don’t like reading at night because they don't want to go in their beds. 

What they do love is to be rocked and sung to. So I would rock Max in a dark, cool room with the white noise machine on, and I made up a bedtime song to the tune of "Twinkle, Twinkle, Little Star"—all about Max. He started asking for that song every night. 

Even now at five years old, he still likes to be held like a baby, rocked, and sung to—he calls it the “I Love You Maxy-Poo” song—even though he’s too big! We make it work, and it’s become our nighttime connection. 

Erica (20:38) 
Yeah, and it’s a beautiful way to connect with him. It sounds like each of you had unique ways to connect with Max during his illness and treatment—connections that continue today. 

Caitlin (20:52) 
Yes. When he’s in the hospital, he also requests that song. I’ll dim the lights, pull the curtains, turn on the little battery-powered white noise machine, and sing to him while rubbing his head. It keeps the same comforting routine even in the hospital. 

Erica (21:15) 
I love that—and it’s also a way to make the hospital feel safer and more comfortable for him. 

We haven’t touched on this yet, Valerie, but parents often ask about the use of screens. Sometimes the tools we use to help kids sleep—like white noise apps—are on electronic devices. Can you talk about balancing screen time, especially when a child is sick, and how it might impact or aid sleep? 

Valerie (21:51) 
Sure. I talk with a lot of caregivers who say that they had—before their child got sick—really significant limits on screen time. It was very important to them to limit how often their child was on the screen for brain development. 

And then their child got sick and all of that kind of went out the window. And Andy, you had mentioned having guilt for Max being sick. And I hear a lot of parents talk about this guilt for allowing their child this sort of unlimited access to screens. 

And I think it's really challenging because kids aren't feeling well, they're bored a lot. They're waiting for things. They're in the hospital without much activity, they don't have their typical daytime routines, and it's just natural to allow them to be on the screens more. 

It can impact sleep and so that is something to be mindful of. There was a while that we really thought it was the blue light that was being emitted from the screens that was really causing people to feel more alert and making it more challenging to fall asleep at night. There's some more recent evidence that that's probably not what's going on, and it may have a lot more to do with what the actual screen time activity is. 

Many activities that especially older kids and teenagers are doing on screens are very addictive, and that might be social media apps that never end, like scrolling through video after video after video. Or it might be really engaging video games. And particularly when those are multiplayer and allowing that child or teenager to interact with their friends. 

When they're sick, this may be the only interaction they're getting with their friends because they're not going to school. They're not going to dances or hanging out with people on the weekends. And so we don't want to say you can't be on the video games with your friends when that's their only social interaction.  

So it is important, though, as we think about getting closer to bedtime, to really consider altering what the screen time activity is, so maybe the video games or the endless social media scrolling happen earlier in the day or earlier in the evening. As it gets closer to bedtime, it might be good to switch over to watching an episode of something so that there's a natural end that it isn't so addicting and challenging to pull themselves away from. And when that episode ends, we can put the tablet away and go ahead and get ready for bed. 

And you know, one thing I want to mention too is, similar to screens, another question I get a lot is about using melatonin. Sometimes it will be, you know, stay on your screen and engage in all this really addictive activity, and I'll just pop a melatonin in your mouth and maybe those will counter each other out. And I think that with parents being interested in using melatonin, it's just very important to talk with the child's treating team about the safety of that, the timing of that. 

Melatonin doesn't work like a sleep pill would, and so we want to make sure that if a caregiver is choosing to use melatonin, that they're using the dose that their treating team recommends and that they're timing it right with bedtime. 

Melatonin is not an FDA regulated product. So, you may get 2 bottles of melatonin that say there’s 1 milligram in them, and if you took them to a lab, one might have 3 milligrams and one might have .2 milligrams.  

So there's a lot of variability. Some melatonin products have other things in them, like CBD for example. So it's really important to read the labels and make sure that if your treating team has said yes, your child can have melatonin, that you're getting just melatonin and not any of the other additives that might be in there. 

Erica (25:46)  
I'm so glad that you talked about that because we have caregivers listening to the podcast, and as I'm hearing you talk about screen time and other suggestions, I'm thinking as an adult, Oh, I should hear some of this just myself. I think for a lot of caregivers, as they're thinking about not only their child's sleep-related needs but their own, the suggestions that you've offered will be really important for them also.

I'm wondering if you all thought about your own sleep-related needs. You've shared a little bit about what you did, Caitlin, to ensure that you were able to get sleep and, Andy, that sleep wasn't as important to you as it might be to Caitlin. Were there any other ways that you want to talk with our listeners about how you cared for your own sleep-related needs during this time? 

Andy (26:33)  
What did we do before screens and video games to put kids to sleep? Do you remember? Does anybody remember who is out there? Maybe listening? I'm an older father. Did we have a warm glass of milk to help go to sleep? I mean, go back to those days when you used to read a book and help sing a song or something. 

Caitlin (26:57)  
I loved going to bed. [laughter] I never… No problems with me. 

Andy (27:03)  
What did we do? You know, go back 20–30 years before we had screen time. Kids were sick back then, right. What did parents do? My parents used to rub my head to go to sleep and that would be it. 

So maybe that's where I'm doing it now with Max. I think I developed my closeness with him when he was in the hospital because we both shared the bed with him after he had done his procedures, and we were outpatient when we were having his treatments. Maybe that's the closeness that I developed with him from growing up with my parents, and it's just interesting to think about that. We're talking about melatonin and screens, and what did we do before, right? 

Erica (27:53)  
Great questions. 

Caitlin (27:56)  
My dad sang to me—he made up a song with my name in it. It only had three notes, but it worked. 

Andy (28:03)  
There you go—that’s how we got the song about Max. 

Erica (28:07)  
Carrying on the tradition. 

Valerie (28:08)  
It’s multi-generational. 

Caitlin (28:10)  
Yes—except my kids don’t like to go to sleep, but I did. 

Andy (28:15)  
I've learned to function without needing a lot of sleep. That's just probably from where I used to work, in New York City. You know, waking up with three or four hours and going to work and just doing it again and again. It's catching up to me a little bit now, as far as wanting to take a nap in the middle of the day, but for the most part I have not needed it.

If I know that my son is getting better, per se, because I'm close to him or both of my sons if I need to sleep with the other one too, because he's not feeling well. Then hey, I can put my sleep aside and you know, get it another time. 

Erica (28:53)  
Yeah, I appreciate that. Each of you have shared today that there is not a specific playbook to follow. What works for one child or one family might not work for another. You’ve also shared the importance of really collaborating and communicating with others who are in your circle of support to determine how to best meet not only your needs as caregivers, but also your child's needs as they're going through treatment. 

You shared with me earlier just about how Max is in remission. That doesn't mean that the worries go away; that physical and emotional healing can take a lot of time. I'm wondering, as we close today, if each of you might be willing to share something that you've learned about yourself or even your family through Max's illness and treatment. It might be one way that throughout all of this, you've clung to a little bit of hope or a little bit of joy, even if it felt like everything was falling apart around you. 

Andy (30:00)  
I think the one piece of solace that I get Is that this happened to him when he was so young and that he more than likely won't remember a lot of it. And at some point, as he gets older, we'll have that conversation. But that's one less piece of information that he needs to deal with now as a little boy playing and having fun with his friends and doing things that three- to five-year-old kids do. 

I think knowing that he is not fully aware of what he has had to go through for the 14 to 18 months that we went through this together as a family gives me peace of mind.  

Erica (30:41)  
Thank you. 

Caitlin (30:43)  
Some advice that I received right before Max started treatment was: “This is going to become your new normal.” I was lamenting; I was really nervous and really scared about what was to come, how we were going to deal with this. And it did become our new normal—and it became something we could achieve. 

Even now, our lives are different. Max is completely blind in one eye, and even though he’s in remission, there are still treatments and therapies that we go to. But that advice was something that really helped me. When I face future challenges, I know I can adapt, just like before. 

Life can still be just as beautiful as it was before, even though it’s far more difficult. Because it is our new normal. And this is something that we do day to day, and we love our kids. 

Andy (31:45)  
I think you’re right. This all happened so fast that we just had to make it work as a family. We did what we had to do. We compromised, met the demands that were made of us to get him to his treatments and to get him to his appointments. And now we are technically out of the woods, but we’re still in a healing period as a family. 

And we’re doing it as we should. Moving forward. One less thing to worry about as we take it each day. Inch by inch, life’s a cinch, right?  

Caitlin (32:20)  
Life is not a cinch. [laughter] How do you eat an elephant? One bite at a time? 

No, I think it's important to note, though, that Andy and I have extreme privilege, where we have resources to help our child. We have you, Valerie, and resources for sleep. We lived 30 minutes from the hospital where Max was treated frequently. 

We have these resources that I think a lot of people do not have. And so, I don't want to come on here and act like we know it all and that we have it all. 

I think the reason that we have been so successful is because we do have the resources. It’s something that I'm very grateful for, but also that I recognize.  

Erica (33:11)  
I appreciate today your vulnerability and your intention and sharing. And I think that everyone listening will be able to pick up pieces of your message that resonate with them and apply to the journey that they're on right now with their child who's in treatment. I'm extraordinarily grateful to have you here today. And also you, Valerie. And thank you to all of our listeners for being with us today as well. 

I hope that this uplifted in some way and especially inspired. I loved the part where you shared that you're continuing to take it inch by inch, day by day. When it felt like there's no way we can do this, you can. For our listeners who are in that moment of there is no way I can do this, hear Caitlin and Andy, and cling to that hope today. Thank you.  

Caitlin (34:10) 
Thank you for having us.

Narrator (34:13) 
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. 

Accuracy and availability of Caregivers SHARE: A St. Jude Podcast transcripts may vary. Transcript text may be revised to correct errors or match updates to audio. Audio on stjude.org may be edited after its original publication. The authoritative record of Caregivers SHARE: A St. Jude Podcast episode content is the audio record. 

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