Courtney Collen (Host): Hello, welcome to our podcast series ‘Beyond the Diagnosis’, focusing on embracing life after cancer, through Sanford Health survivorship programs. I’m your host, Courtney Collen with Sanford Health News. We’re so glad you’re here. Once a patient hears those words, “you have cancer”, that patient becomes a survivor. Through my conversations with health providers on topics related to survivorship, we’re learning more about how Sanford continues its commitment to help people live their best life beyond the diagnosis.
Our conversation today focuses specifically on supporting children after a cancer diagnosis and to tell us more, I have two guests joining me: Cheryl Smith, a clinical social worker and an oncology behavioral health specialist in Fargo and Wendy Iwerks, a child life specialist at Roger Maris Cancer Center – Pediatrics, also in Fargo.
Thank you both so much for being here. Welcome.
Cheryl and Wendy: Thank you.
Host: Cheryl, I’ll start with you. When a parent is diagnosed with cancer, it impacts the whole family, doesn’t it?
Cheryl Smith: Oh yes, it does. You know, there are some statistics I wanted to share: the American Cancer Society in 2020 estimated that 1,735,350 adults are diagnosed with cancer. And of those, about 24% have children below 18 years-old. So that’s quite a lot of children that are affected by parental cancer estimated this year to be about 783,000.
Host: Yeah, those are some devastating numbers. Wendy, what are you hearing from families who are going through this?
Wendy Iwerks: The biggest concern families have is ‘how do we tell our children and what do we tell them?’ When families get a devastating diagnosis of cancer, their whole world is turned upside down and the instinct is really to protect their kids and to not tell them anything. What happens then, when kids don’t get information, they tend to fill in the blanks with their own information, which oftentimes is much worse than what the reality of the diagnosis is.
Host: How does a parent’s diagnosis impact a child?
Wendy: Well, their whole life has turned upside down. The parent can have physical changes, emotional changes, kids get worried about when they see their parents get sick or have to go to the hospital. What does that mean? They don’t understand that a lot of times we expect those admissions. We expect the side effects of the chemotherapy. And if kids don’t understand that this is all part of the treatment to get mom or dad better, they can really develop a lot of anxiety around their parent’s treatment.
Host: I want to learn more about each your respective roles. Cheryl, let’s talk about what you do as an oncology behavioral health specialist.
Cheryl Smith: I’m usually a meeting with the parents because of the diagnosis obviously. And a lot of times we will talk about how this has impacted them. But most of the time, we talk about how will I tell my children? And so what we’re grateful of at Sanford is to have amazing child life specialists who actually we will refer to sometimes to come in and actually meet with the kids and help them understand. So I’m there to support the parents and provide some psycho-education about how to talk to their children developmentally based on their stages of development. We also talk like for younger kids not to use euphemisms and things like that that might confuse them because they’re very concrete. So, when you say you’re sick and then they get sick, then they’re concrete and they get worried about: is my hair going to fall out? Am I going to go through these things that my mom or dad have gone through? So I’m at the beginning and I usually walk the journey with the parents. But this is a program that has been lacking because it doesn’t really help the children multiple times meeting and knowing what to kind of say and do and help support them.
Host: And Wendy, as a child life specialist. How, and when, are you involved in a family’s cancer journey?
Wendy Iwerks: Well, I’ll get involved in the beginning as well and meet with the parents typically and talk about how to tell their children that they have the cancer diagnosis, depending on the child’s age and development. We’ll talk about how I like to explain cancer to young kids. I have a lot of dolls and resources workbooks that kids can use. Workbooks are great because kids have a hard time expressing how they feel so when they can draw it out in a workbook that guides them, it’s very helpful rather than having to use their words. I also love to have kids come in and give them a tour of the cancer center so we can really demystify what kids are thinking about when a parent is going to come get treatment. They get to see where they are. We talk about accessing a port and I have a doll with a port-a-cath in it, you know, if that is what the parent’s going to have, so kids can understand, and we can get rid of those misconceptions that they might have.
Host: How do you explain cancer to a child and does a child’s age determine how you do that?
Wendy Iwerks: Well, age comes into play all the time. I think it too, as a how stressed and how anxious the child is and how I like to explain cancer to younger kids is talk about their cells dividing and how our cells divide all nice and evenly. And sometimes they get confused or they get mixed up and they start dividing all crazy. And those crazy dividing cells develop something called cancer. That’s a very basic way how I explain it. I love to make what I call blood soup with kids to explain blood cancers. So I’ll use syrup for the plasma marshmallows for white blood cells to represent those red blood cells are represented by like Red Hot candies. And I use sprinkles for platelets and we mix them all together and we talk about each of their functions and then I’ll put raisins in for the cancer. So kids can see just how that can crowd out all those good cells. And also then we’ll take some of those raisins out and they’ll see, ‘oh boy, I’m removing red blood cells and white blood cells and, and platelets’. So sometimes mom or dad might have to come in and get those things. And using the words we use, you know, we refer to blood and platelets as product. Well, what does that mean to an 8 year-old? So we’ll explain when you hear that word product, this is what it means.
Host: Tell me about CLIMB and the programming available for Sanford families.
Cheryl Smith: The CLIMB Program stands for Children’s Lives Include Moments of Bravery and it is a program that has a child, a teen and a parent component. So, it’s a six week program. It’s held weekly for an hour and a half to two hours. And then we all have been trained by the CLIMB Program to facilitate it. And we focus, for the parents, on psychoeducation, how to talk to their children, how to support their children and for the children it’s developmentally specific and the teens have their own program, too. So the goal again for the parents is to identify and address, you know, how the disease is affecting their children. But also I think it’s really important when I meet with parents, like Wendy said about the protection, they try to protect their children. So they’re also not modeling the behavior of how to deal with difficult emotion. So if I see a parent who’s highly distressed, I’ll say, how are your kids doing? And they say “fine”. I kind of questioned that with them. Okay. You’re not doing well, but they’re doing fine. And talk about the incongruence with that. So it’s also teaching parents how to model the behaviors. We want the kids to learn to of how to share when they’re happy, how to share when they’re sad that they can be both happy and sad at the same time and giving them skills to manage that. It also reduces the parent’s stress. We know when parents have less stress that their immune function is better. So it’s really going to be, I think, a great program to help them have the skills for the parents.
Wendy Iwerks: And for the kids. One of the things it does is it really helps them understand that they’re not alone, that their peers are going through this as well, that other kid’s parents have cancer. So they really can make some nice connections with other kids that are going through something so similar. And like Cheryl said, with the way they learn to cope with their emotions and to deal with the stress and anxiety of something serious in their family are skills that they can take into their adulthood. I mean, they are skills that they will use life lifelong.
Host: What does that program look like? And at what point do families get involved?
Cheryl Smith: CLIMB was started for children and then the parents’ component was added. We recommend that we don’t have children attend until three to four months after the parent’s diagnosis, because it takes that much time for children to be in a space, to adjust where they can be in a space to receive the support. It is not a psycho therapy group. It’s a group to provide support to one another going through something similar and again, finding and building skills that some of them already have, but enhancing them and developing them. And with the kids, it’s very interactive, there’s activities that they’re doing. So they’re learning through some fun activities. Again, it’s weekly, it’s a closed group, so nobody can kind of drop in once the group starts because that provides the group cohesion. And that helps with building each week on talking about more difficult subjects. So the first week, you know, kids are talking about a happy, which is an easy one to talk about. Then each week,. it builds on to the more difficult emotions that they’re feeling. So it’s a ladder that we’re climbing and it’s for six weeks and Wendy can talk more about the kids program part.
Wendy Iwerks: We take the kids after the part of the first group and have them alone, where we have them do the activities to help them express themselves. And with the teens, we have them do journaling, and if they want to share it, we let them share it or we encourage them to. If they’re more like they don’t want to share that, that is just fine with them. We’re not going to make kids share or interact. But I think through the way we do the activities, they really gain some comfort and feel like they can articulate how they feel. They feel very safe in that environment.
Cheryl Smith: It made you think about Maslow’s hierarchy of needs. We want to make sure they’re safe and they feel supported. And then you’re moving up to more emotional support through them. So, yes, but the mission of CLIMB is that just every child whose parent is diagnosed with cancer is given early tools and emotional support to cope. So again, it’s not a psychotherapy group, it’s more of a group about having kids be with other kids who are going through the same thing because often they are the only kids in school who have cancer or often the parents are the only parents who have minor children. They might have older adults that they know who’ve had cancer, but maybe they’re coping with you know, adult children, not minor children.
Host: I bet that support is so valuable even at young ages for both the children and of course their parents. What kind of feedback are you hearing from families who have been a part of CLIMB?
Wendy Iwerks: Feedback from kids, because sometimes they might have to choose between another activity like a sport activity, is that they want to come to the CLIMB group because they find so much value in it and such a connection with other kids that are going through something similar, which I think speaks a lot too as how important it is for kids and families.
Host: Why is this so important for children to find this support group to talk these things out? And then of course, why is it important for parents as well, especially the one who received the diagnosis?
Wendy Iwerks: For kids, it really helps them name their emotions that they’re feeling and also learning that all the emotions they have are okay. A lot of times we try to stifle kids when they’re crying, we’ll say “don’t cry, don’t cry”. But all of the emotions that kids are feeling are normal and they’re okay. And then if you’re really angry, how do you deal with that? And so giving kids appropriate ways to deal with the emotions that they have. We talk about what the cancer is, so again demystifying those misconceptions that kids can have about their parents’ illness is a big part of what CLIMB does too along with the connecting with other children and helping them to learn ways that they can take these coping skills into the rest of their lives.
Cheryl Smith: As far as parents, you know, it increases their knowledge about how their children adjust and what a normal adjustment is. They might feel overwhelmed and worried if their children are having behaviors, which can be common when they’re dealing and coping with a stressor like cancer in their family. And parents are again the primary source of modeling and teaching children how to do it and how to express and handle emotions in a helpful way. So, the program helps them do it in a structured way where, not only the parents but the children, have a similar language to talk about their emotions, too, so that they’re on the same page and in an age appropriate way for the adults.
Host: Why did Sanford adopt the climb program as part of its survivorship care? Was there a need for this type of programming?
Wendy Iwerks: Our survivorship program did a survey of families and an overwhelming concern or need that came up was parents didn’t know how to talk to their kids about cancer. The Tree House Foundation out of Colorado had started this program, which has been adopted around the country and actually around the world. The staff at Sanford had training through the Tree House Foundation to implement this program into our enterprise.
Host: How pleased are you to be able to offer this to families?
Cheryl Smith: I actually did my Master’s thesis on parental cancer. Cancer is not a ‘me’ disease, it’s a ‘we’ disease – and it affects everybody. And, the plan of care should include are we caring for the children of parents who have cancer.
Host: If a family has more questions about how to get involved, where they can get more information, what would you suggest they do?
Wendy Iwerks: The best way is to ask their oncologist about it or their case manager, social worker. They’ll be able to get us them connected with us so we can help them get registered and make sure the dates of the program will work for them.
Cheryl Smith: The goal right now is we will hold it four times a year. If it’s too soon in their diagnosis, at least we know we can refer them to the next date and talk about providing them resources until then to kind of help with their coping and their children’s coping. The goal is maybe three to four months after somebody is diagnosed, but there’s no goal on how long. We have somebody who’s coming who has been diagnosed for like six years, but she’s still going through treatment and our daughter’s struggling. So, there’s no end date of how long. And so, if the children are struggling with how to cope with the cancer, no matter how long it’s been, we have this resource for them.
Host: Is there anything else you want our listeners to know about how Sanford is supporting children through the survivorship care?
Wendy Iwerks: It really comes down to Sanford’s commitment to family-centered care and knowing that when the person is diagnosed, if you think of it like a crib mobile, if you move one part of that, it has an effect on every other piece of that mobile. I think of a family being that way when you get something like a cancer diagnosis that is very stressful and very frightening, it affects the whole family. Sanford is really committed to helping the entire family that is experiencing this and, and us being alongside of them during this cancer journey.
Host: Wonderful Cheryl Smith, Wendy Iwerks talking about the CLIMB program and Sanford Health supporting children following the cancer diagnosis of a parent. Thank you both so much for joining me in this conversation for sharing more about the CLIMB program. Thank you for all that you do.
Cheryl and Wendy: Thank you.
Host: This was another episode of our cancer survivorship series Beyond the Diagnosis. I’m your host, Courtney Collen. Stay well and we’ll see you soon.