Ep 129: Talking to children about cancer, with child life specialist & therapist Kelsey Mora

Ask Dr Jessica episode 128 with Kelsey Mora, a dual certified child life specialist and therapist, discusses her work in supporting children and families facing illness and grief. She shares insights on how to talk to children about cancer diagnoses, emphasizing the importance of using clear and honest language. Kelsey also introduces her book, 'The Dot Method,' which provides a comprehensive guide for children and families navigating cancer. Kelsey's work with the Pickles Group, a nonprofit organization supporting children of adult cancer patients, is also discussed.

Takeaways

• Use clear and honest language when talking to children about cancer diagnoses.
• Provide hope and positivity in conversations with children, balancing realism with optimism.
• Incorporate fun and joy into difficult days to lighten the mood and strengthen connections.

Dr Jessica Hochman is a board certified pediatrician, mom to three children, and she is very passionate about the health and well being of children. Most of her educational videos are targeted towards general pediatric topics and presented in an easy to understand manner.

Do you have a future topic you'd like Dr Jessica Hochman to discuss? Email Dr Jessica Hochman askdrjessicamd@gmail.com.

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The information presented in Ask Dr Jessica is for general educational purposes only. She does not diagnose medical conditions or formulate treatment plans for specific individuals. If you have a concern about your child's health, be sure to call your child's health care provider.

Transcript

Unknown: 0:00

Hi everybody, I'm Dr. Jessica Hochman, paediatrician, and mom of three. On this podcast I like to talk about various paediatric health topics, sharing my knowledge not only as a doctor, but also as a parent. Ultimately, my hope is that when it comes to your children's health, you feel more confident, worry less, and enjoy your parenting experience as much as possible. Hi, everybody. Welcome back to Ask Dr. Jessica. I know that for all of you listening, your time is valuable, it's limited, and I so appreciate that. You're here listening to today's podcast. Now today, I welcome Kelsey Mora. And Kelsey is a Child Life therapist, and she has a new book called The dot method. Now unfortunately, many people at some point in life will have a friend or a family member who faces a cancer diagnosis. And for parents, they may want to explain cancer and the many terms that surround a cancer diagnosis like chemotherapy, radiation, tumours, etc, etc. But they may find it difficult to communicate it well to their kids. So Kelsey created the dot method, which is an interactive book designed to educate kids about cancer. And it also offers strategies to help them cope with the diagnosis. So please share this episode with anyone who you think may benefit from learning about the dot method. Thank you to Kelsey for joining today. Now onto the podcast. So calcium, so excited to talk to you. I can't wait to hear all about you and what you've been up to tell us about yourself and what you do. Yeah, so I am a dual certified child life specialist and therapist. So most of my previous work was in the paediatric hospital. I worked in the ICU mostly for almost a decade. But I also work in private practice. And for pickles group, which is a nonprofit organisation, the high level of what I do is really support kids, families and parents with illness and grief related challenges. And what brought you into this space. So as a teenager, I actually experienced a loss of a friend to leukaemia and so I started volunteering, where he was treated and learned about the field and just right away, knew I wanted to do that and went to school for Child Life. And then things kept kind of evolving from there. So just to understand your specific interest is in helping children navigate the challenges that come along with a cancer diagnosis. Exactly. Yeah, really any diagnosis, but I have found a lot of my work in the cancer space. I think that's so interesting, because for most people, I think the inclination is to run away from challenging topics like cancer. I find a lot of parents can't even say the word we call it the C word. But the truth is, cancer is so prevalent. So what an interesting space that you work in, I'm sure people are really appreciative to meet someone like you that helps them understand all the issues that encompass cancer. Yeah, I definitely run toward difficult topics. And I and my I really teach a lot of parents and adults how to navigate difficult topics with kids of different ages. You worked for a long time in the paediatric ICU, correct? Yes. And what did you do there? Wow, a lot of things. I mean, one thing is just helping the kids the paediatric ICU patients cope with their hospitalisation, anything from diagnosis or trauma to procedures, so helping them be calm, understand what's happening to their body. For more critically ill children, I often supported the siblings of the patient, guiding parents on how to talk to their siblings, I did a lot of end of life support, so grief and loss, doing memory making at the bedside, but also like, bringing joy to the family. So celebrating holidays, and birthdays and milestones. And it's really using the expertise in child development and play to support kids and families during medical traumas and critical illness. I love that incorporating more play into all that we do make things better. Absolutely. Can I ask you what is memory making? It's a good question. So one of my mottos is really about like making better memories out of difficult moments. So the true sense of the word and the Child Life world is creating like keepsakes. So it could be handprints or, you know, hand moulds or locks of hair, things that really help families hold on to and remember their person. But it can really extend beyond that. Sometimes I was helping siblings with like a therapeutic activity where they're making, you know, bracelets or artwork or memory boxes that help them express and process their grief. What a lovely venture. Yeah, I think it really helps these like really traumatic and critical moments be a little bit softer, gentler, maybe more approachable for families. So can I ask you what are what are good things to say to children when they hear about a cancer diagnosis? So I think you just actually asked that question in an interesting way, right when they hear about a cancer diagnosis, and I think often we run away from the word cancer, but the reality is that kids will face cancer, right? It's to someone they love. They might hear the word. And so my advice is really using those real words so that they're hearing it from their most trusted adults, I refer to cancer as a problem with the cells. So really helping kids understand that it's different than any other type of illness that they might be familiar with. It's not contagious, isn't it that no one caused it. It's nobody's fault. So really clarifying that it's a different type of illness. Are there any words that you would caution us from using with children? So good question. So I mean, most things are repairable. Right. So you know, parents know their kids best and are usually doing and trying their best I would say, a big nono is obviously like blatantly lying to kids, like telling them something that's totally not true, right. I think if we're telling kids a version of the truth, that's a great starting place. But I do think sometimes parents are more scared of it than kids. And when we just like, say it as it is, usually kids can really understand difficult concepts. Okay, so I guess I'm wondering, in your time in childlife, and talking with families that are dealing with a cancer diagnosis, are there situations that you've encountered where you recommend that we stay away from using certain verbiage? I mean, I think I think words that are confusing, right? So I think like, that's my that's why it's so important to use the real words, because they think a word like, you know, they're sick, or they have a boo boo, like, that's confusing for kids, right? Because I had a boo boo yesterday, and you put a bandaid on it, and I'm all better, right? Or I was sick last week. And, you know, you gave me a little bit of medicine, or I watched the show and got some extra rest, and like I got all better. And that's not how cancer works, right? So it actually causes more confusion to not tell kids what it is, and what's happening. We want to use words that are familiar to them. But we want to clarify how it's different, because kids will just latch on to that like, oh, a boo boo, that's no big deal. But cancer is a little bit more serious than a boo boo, even really small kids, they might not understand what's happening. But they can sense the changes in their environment, right? If people are crying, all of a sudden, the parents in the hospital, there's a bunch of people showing up to the house, like even little kids sense that and so being able to say like, I'm really sad, because dad is sick dad has something called cancer, it's a problem with the cells like they might not understand all of that. But it does create a narrative for them. So they're not left trying to like make sense and figure it out on their own or say nothing because they think we're not supposed to talk about it. Your mission completely resonates with me for I applied to medical school. There was a group that I was really involved with the camp Ronald McDonald camp. They have a camp in Southern California for kids with cancer. And I would volunteer at this camp. And it was a wonderful camp definitely influenced my decision to choose paediatrics. And they also had a camp for kids with siblings who had cancer. And so I remember thinking at first Oh, that's interesting. Why would they need a camp for the siblings of kids who had cancer. And I spent some time I would volunteer for a week at a time, it was interesting how in a lot of ways the siblings were more affected than the actual patient. They in many ways were neglected emotionally. The parents were not focusing their attention on those kids as much. And they were struggling emotionally to understand what's going on. I think it's really interesting that you're focusing on helping the kids that aren't the patient, because they definitely have emotional needs that that need addressing. Yeah, absolutely. I mean, I think that any illness affects the whole family. But sometimes you're so in the thick of it, that it's hard to address all of the needs of all the family members. And I think the patient is most aware of what's going on because they're going through it themselves, right? It's happening to their body, you can't not talk about it. Other people are talking about it, they have access to maybe more resources at the hospital. But those kiddos at home might have really big questions or worries. And so it's so important to address that as well. And so, so tell me, what inspired the book that she wrote the dot method? Yeah, I mean, the dot method is really has been my teaching tool for cancer. And so for many, many years, it's just what I was using in my private practice. And in working with patients, and I was working with a specific patient, they were actually only two years old at the time. And I was consulting with their primary health care team, because often I'll talk to the physicians or the nurse about kind of coping plans for port access or procedures or whatnot. And the physician was like, What is that like? I need I need that because I sent a picture of the of the artwork that we had done, and it had really helped this young two year old, like, understand and cope better. And I had this aha moment. Like I'm like, Yeah, this is really something special. And it's so simple, but I use it with, I've used it with so many families. And so it was 2020 and I was like, I should just make this like a workbook option, right so that it can a physician can give it to a patient or therapists can use it with their private patient. So I made it in 2020. And then like the world shut down, and I had my first child, and now it's 2024 and it just released on January 6. So really the the thing that led me to do You heard is like a physician being like, I need this and me realising like, yeah, a lot of people need this. And not everyone can work with someone like me directly. But there's a lot of people who could benefit from this information and this resource. Tell me more about what's in the book is there is so much in it. So it starts with really like a note to the user. So guidance for parents, caregivers, clinicians about being honest with kids, you know, keeping things as normal as possible, expressing feelings, then there's a whole how to guide about how to modify and use with different age groups. There's even a section on like, understand your comfort level, if you're someone who doesn't want to use the cancer word, are there other ways to talk about cells and to use this tool, and then there's a glossary of terms, so all of the main like medical or therapeutic terms that are used throughout the workbook, or there's child friendly definitions about how to talk to kids about those things. But the first thing that we do is talk about just general illnesses. So every page is interactive, kids draw or write something. And so the person in the story, or the artist of the book is really the child who's using it. So it could be for any kid, a kid who has a teacher with cancer, or a neighbour with cancer, or a grandparent, themselves a sibling, a parent, because they identify like, who is your person that has cancer. And the dot method itself is basically using dots to make healthy cells, and then cancer cells. And then it talks about treatment, which is when you cross out the cells, so crossing out the cancer cells, and when we do that, we sometimes get the healthy cells. And that's what causes side effects. But the journey of every child is kind of like written through the book so they can write what side effects their person has, or they have. I talked about a tumour. So really, pages one through 12 are like the education piece around cancer. And then the second half of the book is feelings, coping strategies, how to handle a good day or a difficult day, depending on how someone's feeling. So that's kind of the high level overview. So this book is recommended for kids of any age. In my opinion, yes, of course, you know, when you publish a workbook, you identify an age range. So it's really targeted at four to 12. I think that's probably the sweet spot, like a four year old through a 12 year old, but it's really modifiable for younger kids and teenagers, too. I assume parents should be going through the workbook alongside their child. But yeah, I mean, it's really meant to like there's a section for kids to write their questions down, and then go back and visit their questions and ask like, what which of your questions are answered? What questions do you still have? Who's your support? Who can you lean on when you need somebody, so it can be really meaningful to do it with an adult and caregiver so that it's really fostering those conversations together. But an older child could totally do it by themselves. And then I've had a lot of clinicians interested in using it as a tool. And so they might do it with a child like during their therapeutic sessions. It could be done cover to cover in one sitting or it could be kind of broken up depending on what that child needs. And so as far as the education piece goes, just to understand more of what's in the book, you describe what cancer is, you describe things like Port Access, what a tumour is. I'm just curious what else, what else you've included in the book? Yeah, so I kind of lumped together treatment, as you know, a global term, but then I break down so that kids could identify different types of treatment depending on their situation. So it talks about chemotherapy, immunotherapy, radiation, and surgery, those are kind of like the main four types of treatments. And then it asks, did your person have you know, one or more of those treatments, so they can kind of self select what matches their, their experience. And then I talk about different ways to take medicine. So a poor and IV orally or, you know, a beam, a beam of energy through radiation. Over the weekend, my daughter asked me what a tumour is. And I said, and I thought that was very interesting, because I knew I was going to be talking to you today. It's so true that kids have questions about cancer related topics. And I said to her, I said, How did you know to ask that question? And she said, Oh, there's a kid in my class, they found a tumour in her knee. And she didn't know what a tumour was. And so even for kids that don't directly have a family member with cancer, it may be helpful in general, because I'm able to describe what a tumour is to a kid. But I imagine there must be many parents out there that aren't sure how to explain these terms correctly, without causing too much worry, but explaining it appropriately. Yeah, absolutely. I mean, I think the book could totally be used for a child who's just curious about cancer and wants to learn more. One of the grief therapists who reviewed the book for me said it's an everybody book, and I think that's true. I mean, I'm a child life specialist and a therapist. So I definitely have therapeutic books on my kids, bookshelves, just by the nature of my work, but I do think cancers are so prevalent that I think anyone may have questions they may not identify a specific person that they're creating. The story or maybe they do maybe it's, you know, someone I saw no care a character in a story or in a TV show or something like that. Or maybe they could make up a person just to learn about cancer, but there's a whole page on a tumour or mass. And I talked about how it's basically a ball of cancer cells, and then it goes into surgery. And not everybody has a tumour or mass. So it even says, you know, if not skip to the next page, right? So it's really like customizable based on what a child is needing to learn about and what they're experiencing in their life. But um, so great, and I know your book has just come out. But have you gotten any feedback or any heartwarming stories that people have shared with you? I think a heartwarming story is not necessarily since the workbook came out. But the workbook is dedicated to my friend Laura. And she was diagnosed with breast cancer in 2020. And I had just written that method in the Workbook format. So she her son did it on like pieces of paper, like printed, and he was six at the time, and he's now nine. And I just saw him and he got to see the book. In his hands. He's like, this is so cool. So it's dedicated to their family and all families that I've worked with. But that was just really unique timing and the fact that it was my close friend, she's actually a paediatric ICU nurse. And she needed this resource. And so I think the fact that it's available now to families is just so exciting. I think another fun story is that on the cover, there's pictures of like, a bunch of the dot method characters that I've created with different clients. And one of them is a mermaid. Because I worked with a kiddo who wanted to make their body outline a mermaid. So you know, their parent had cancer, but they did the dot method with a mermaid outline. And so it's just really can be personalised in a lot of different ways. That's great. It sounds fun as well. Yeah, absolutely. And there's like extra dot, there's extra body outlines in the back of the book. So even though it's a consumable product, like if kids wanted to do it again, or wanted to revisit it, and I feel like the book itself becomes a keepsake. Like it's something they can hold on to and remember, do you feel like this method would really have come in handy in your previous work, counselling families when you worked in the hospital? Absolutely. Many paediatric centres have child life specialists who are dedicated to the patients who can go in and sit with a patient and do education. But some, some hospitals, you know, not every child can be seen and have that in depth of an intervention. And I mean, yeah, I think just having a cover to cover place to be able to learn about cancer and share feelings and identify coping strategies like it feels like a really comprehensive experience for kids who need it. That's fantastic. And you're involved in another group to support families with cancer, the pickles group, correct. Can you tell us about this group that you're involved in? Yeah, yeah. So the pickles group is a nonprofit organisation that provides free support and resources to children of adult cancer patients. So parent or guardian, it was started just a little under three years ago. And it was started by a few founding families in the Chicagoland area, who knew me through my private work. So they launched this nonprofit. And my role is really like designing the curriculum training healthcare providers on how to talk to kids about cancer parents and caregivers on how to talk to kids about cancer. And the dot method is actually one of the activities that they do in our five week connecting over cancer virtual programme, which is, which is cool. So, but yeah, we're free. We're national, global, really. So the trainings, the free webinars, we also have a free support kit that can be given out at the bedside about how to talk to kids about cancer. And our virtual programmes are available to anyone, anywhere who has a parent or guardian with cancer. And then on our website, we list all of our upcoming programmes, trainings, webinars. That's great. And I just want to share I have a personal pet peeve about how a lot of physicians or healthcare workers talk about serious, potentially serious diagnoses with kids. So I'm curious your thoughts on this, but I find that a lot of doctors when they talk about serious illnesses, they don't offer as much hope, as I would like to hear. And I wish we were a little bit more hopeful in our conversations with kids, because I feel like hope is free. But I'm curious what your experience is. Do you think that we should be more hopeful overall, as medical professionals? Yeah, absolutely. I mean, I think there's space for both right, honest information and hope there's always space for hope. And I think my hope for that method is to like start those conversations sooner at a time when there's a lot of hope. And a lot of you know, we don't know, right. What we do know right now is that there's cancer cells and the next step is to do this treatment, right? Sometimes there's conversations where we're switching focus and we're talking about you know, switching medication Shen's are a recurrent or ending treatment. And even then there's still hope. Right? We can switch focus to, you know, spending quality time together and making memories. And I've had all of those conversations with family. But I think there's always something to be hoping for, right? This treatment is going to be really hard and really intense. And I'm hoping that you can have moments of relief, or I'm hoping that we can treat symptoms along the way so that you have good days and can do the things you enjoy. Right. And, and so like space for both, I think is so important. Yes, no, absolutely. I think I'm specifically thinking I was recently visiting a friend of mine in the hospital, and she had a scary event happened to her. And she asked the speech therapist, am I going to be okay, and the speech therapist was very ambiguous, really didn't offer hope just said, We'll see, time will tell. And I was so hoping that she would say something like, shine a light on the positives, you're young, you've got you're motivated. I've seen lots of people get better in your situation. And I missed that from her. So I just I think medical professionals on the whole could be more hopeful. And I agree, you have to you have to be realistic. But I like hearing hope myself. So. And I like that you talk about adding joy. I think that's really a fantastic aspect that you focus on as well. Tell me more about that. Yeah, I mean, I, I'm a child life specialist, right. Like, my background is in play and fun. And I think when things are really hard, I think reframing how we can connect with one another, right? So when parents are feeling really sick and unwell, and they can't be as active or physical, like, there are still ways to connect, right? We might maybe plans or traditions or, you know, disrupted or have to look different, but can we create, you know, new memories, new traditions? So I think a lot of that reframing, you said something, I'll let the therapist in me, right. Like, a lot of times, I'm validating, so. Validating and and reassuring and redirecting, but I think when a patient asks, am I going to be okay, the therapist in me wants to also ask like, what is it what would okay look like? Right? Like, what what does being okay look like? Because I think that also helps establish, like, what are their expectations? What are their hopes so that we can understand? Like, what hope are we giving? Right? Are you gonna live? Yes, right. Is your late are your language abilities maybe going to look different? Perhaps. Right? Is it? Is this journey going to be really hard? Yeah, right. Are we going to see progress overnight? Probably not. Are we going to see progress? Yes. Right. So like, understanding what is okay mean to you? What are you hoping for? So then as the healthcare provider, the medical professional, I can know how to navigate there hope in a realistic way, that I agree with that be a voice of reason, but also have a positive perspective that they can they can listen to, because I do think the brain is such a powerful resource. So if you lead into something with a positive mindset that can go a long way. Absolutely. I do a lot of like mindfulness and positivity work. And you know, I'm always teaching the kids I work with that, like the positivity muscle in the brain needs extra exercise, right? Because our brain likes to focus on that negative muscle. And so let's let's practice, let's give it some exercise. You know, that might mean, doing some journaling before bed or answering some questions, something as simple as like, what was your favourite part of the day, even when you're navigating cancer? Because I think we do often our brains naturally focus on all the things that went poorly or were difficult, and we need to find those little glimmers of joy throughout the day like, and for parents that I always call it the positivity sandwich, right, like sandwiching, a negative with to positive? Yes, you know, you got a prize at the doctor and there was a poke, and you're feeling so much better now. Right? Like positive, negative, positive so that we can really build that positivity muscle in the brain. If people listening if they're, if there are parents that are having a bad day, they're on the grumpy side. How can we lighten up our mood and bring more fun? What's your advice is a child life specialist? Yeah, I mean, I think the first thing is to like self regulate, right? Take that deep breath, like validate your own feelings. And I think like, asking, they're asking ourselves, like, how, how important is this moment right now? Like, let's focus on what really matters. And right now, like, I think we all need a reset. We all need a laugh. So I think there's some go to, you know, statements even like, let's try that again. Right? Like, let's reset, like, shake it off. I'm feeling you know, like, I'm feeling a little frustrated myself. I think we all need a reset. I love music, like turning on music, dancing. I think you know, even if you're a parent who's not feeling well like dancing from the couch, you know, playing board games, having, you know co watching screens, right? Like if it's like one of those days where you're like, we just need to like snuggle and watch something but do it together, right? Like make it meaningful, make it connective, make it fun. You know, I've worked with parents who are super sick and kids want have a dance party and I'm like, You're the DJ, like your job is to just change the music. Right? So I think when we feel like really defeated really like we can't, you know, we just can't do it all like focusing on what can we do? How can this look different, so that we can experience joy and connection. So deep breaths, reset, and maybe add some add in some dancing or Music To? Fantastic, I'm always I'm always up for a good dance party. So I agree with this, it always makes that always lightens the mood, a good dance party, for sure. Okay, so this is fantastic. I thank you so much for all that you're contributing. I think pickles sounds like an amazing resource. I'm so excited to know about the dot method, anything else that you'd like parents to know, or any advice you'd like to impart for parents that have children that may be learning about a cancer diagnosis or another serious illness? I think, to two big pieces of advice, one, I think is just because we're not talking about it doesn't mean that they're not thinking about it. So I think that is like a helpful reminder that, you know, we can be the trusted source of information and help kids know that it's okay to talk about something. And and just because we're talking about it doesn't mean that's all we have to talk about, right? It actually sometimes, like reduces anxiety in a way that we don't talk about it as much because we trust that, okay, we're gonna talk about it when we need to. Which brings me to the second piece is where starting when you don't know like, where to begin, how much to cover, start with the need to know. So the need to know is like, what are my kids going to experience? What are they going to observe? You know, if a parent's going to be in the hospital for a couple days, they're going to need to know that where is my parent and being honest about where they are, if a parent is having surgery, and they're not going to be able to hold their child or they're going to come home with drains like those are things kids are going to see or notice. And so starting with the need to know and thinking about what's my child going to experience? How is this going to impact them, I think can help parents know where to start? And the document that is really intended to be like that comprehensive, step by step process for parents and caregivers and clinicians who don't know where to begin? I like that, because I think the fear of parents and talking about these illnesses is we don't want to overwhelm them. But I like I like thinking about providing them with information that they that they really need to know but not not oversharing. Right. Yeah. And then the need to know kind of leads into the want to know like, what are kids asking about? Or what are they sharing that then they want to know more about that? Yeah, it's like, these are just bite sized conversations that build on each other. And in that way, kids know that it's okay to talk about it's okay to ask about, and they're not left trying to figure it out on their own. That's when I think they do feel overwhelmed because they see things or they notice things but they don't know what to think or what to ask. So they look to their parents to do that for them. Fantastic. Well, you're such a wonderful resource to know about. Thank you so much for being there for so many families. And I look forward to hearing about your continued success and good luck to everything that you're doing. Thank you. Thank you so much for having me and sharing about these resources. Thank you for listening, and I hope you enjoyed this week's episode of Ask Dr. Jessica. Also, if you could take a moment and leave a five star review wherever it is you listen to podcasts, I would greatly appreciate it. It really makes a difference to help this podcast grow. You can also follow me on Instagram at ask Dr. Jessica See you next Monday.