CURE spoke with a childhood development specialist and colorectal cancer survivor to offer firsthand advice and tips on how to discuss a cancer diagnosis with children of any age.
Among the many challenges individuals face when given a cancer diagnosis, parents and caregivers in turn also face the dilemma of, “How do I tell my children?”
During a webinar, Fight Colorectal Cancer offered information and tips on how parents can have these tough conversations with their kids about a cancer diagnosis.
CURE spoke with webinar presenter Leslie Welch, MS CCLS, a childhood development specialist from Gilda's Club Middle Tennessee — an affiliate of Cancer Support Community – and a colorectal cancer survivor, Danielle Ripley-Burgess, who has faced having these conversations with her daughter.
To start, Danielle, can you tell us about your cancer journey and becoming a parent?
Burgess: I was diagnosed with colorectal cancer just a few weeks after I turned 17 years old. I went through about six months of treatment and after that, I went on to graduate high school, go to college, get married, start a job. I was diagnosed with a second recurrence when I was 25 years old. So, that was a stage I cancer at the time, and surgery took care of that. But, throughout my course with colorectal cancer, I faced it twice, all under the age of 25, and it has been a big part of my life for about half of it.
At the time when I was diagnosed with my first occurrence of colorectal cancer, the doctors wanted to do a surgery that would save the hormone function of my ovaries, but in a sense, they moved them up out of the way of the radiation. So, that means natural fertility options for me would be slim, and then even if it was a possibility, I’d be looking in to in vitro. I didn’t really think about it too much at the time. We were in the process of just kind of survival mode. A little while after I had the surgery and came to terms with what I was dealing with, I wanted to start a family, but something inside of me knew that adoption was going to be a good option. So, that was the path I set my heart on, and when I did reach the point with my husband where we wanted to start a family, I opted to go ahead and fully pursue the adopting route.
After having to have conversations with your daughter about your cancer experience, what kind of language do you recommend using with children?
Burgess: The webinar helped me learn to not actually say some things I have been saying. When (my daughter) was younger, I would say I got sick or mommy is sick, and I am learning to not say “sick” but to say “cancer.” And then a lot of times, we’ll also explain what comes along with it. So, even if cancer seems a little heavy for what she can take or doesn’t fully grasp all of the pieces and parts, we talk about the different parts of treatment for cancer. So, for example, I had surgery, and because I had surgery that led to us needing to adopt to start a family. And she can see my scar and understand that surgery is when doctors go in to your tummy and take out bad things or help heal things on the inside and sew it back up. And that’s a concept she’s been able to understand, even as young as she is. Being able to visually show her those are parts of the body and kind of point out those areas, and explain, ‘This part has yucky stuff called cancer, and we had to take it out or it would make mommy really sick.’ All of that has been really helpful to help her conceptualize and understand it.
Welch: The word “sick” is a really interesting one. It is so general, even across the continuum of child development. Even to younger children, sick is often associated with a cold or flu or sniffles, something where you can see the physical manifestation of it. So, in my practice, we don’t use the word sick, we use the word cancer. It is exactly what it is. It is not creating this secrecy around it. It helps them to better identify and have the language to talk about it.
The other issue with using the word “sick” is it is not what the kids associate with being sick, so it’s confusing; and then, if a child is feeling sick in the way they know sick, like if they stay home from school, whether they have the cold or flu or whatever it may be, there is a lot of fear that they can then associate with that because they might think they too have cancer. So, it can create this deep confusion that can actually lead to greater stress and distress.
The word cancer itself is where you start. It is what it is, and then you can start talking about what that actually means. There are so many different types and ways that it will affect the person with the diagnosis and their family: the treatment plans are different, where it is located in the body is different, and that is going to impact the person with the diagnosis. That is where you really get in to the meat of the conversation.
What should a parent who is facing a cancer diagnosis do first before telling their kids?
Welch: It is important for them, whoever the primary caregivers are in the household, to get an idea of what they are going to tell the kids. Even before they know what they are going to say, make sure they’ve digested the information, and make sure they have the information of the next steps. That is the main thing that kids are going to react to. You can dispel what cancer is, you can give them information on what exactly is happening and what it means, but they are also going to react to the caregivers.
If they have digested the information, processed it, allowed themselves to feel what they want to feel about it, and then figure out what the next few weeks might look like. And how they want to share the information, so that might be second step. But first allow them to get a grip on their own emotions around it because that is what the children are going to react to.
How can a communication plan be helpful?
Burgess: That was really helpful for me to learn about because, even as a planner myself, I didn’t have a flush out plan for how we would tackle this with my daughter. So, a lot of this has been on the fly. Learning about communication plans and what are we going to say, when are we going to say it, what are we both comfortable with, is just as beneficial for the kids to know what’s going on and have that communication. It would have been helpful for my husband and me, and our family to be on the same page too because I found that even if it’s outside of our walls, everyone in our extended family has an involvement with my diagnosis. They know about the story, they have different stories that have spun off of it, different feelings. So, now kind of realizing we can take this plan and put what we are comfortable with it together, and we can communicate and share that out to the family. Then everyone is not walking on egg shells, or they’re not scared to share something because there is some shared control in a capacity of what we are comfortable with and not comfortable with. It helps to remove a lot of that confusion.
Lastly, what is your biggest piece of advice for parents who have to have these talks with their kids?
Burgess: Kids are more resilient than we know and we give them credit for. They carry a lot of wisdom in their little minds, and their attitudes. Instead of pushing them away or keeping them out, just tell them.
Welch: Be vulnerable, and by that, I mean be willing to just be real with the kids; be willing to share information. If kids ask a question and you don’t know the answer, be willing to say, “Hm, I don’t know. I’ll find out, or maybe we’ll have to figure it out together.” The more real you are, the more it is validating that the questions and frequently changing emotions makes them feel more grounded and related to you. If we adults can get out of our own ways of thinking 100 steps in advance, and having to know every answer down the road, and just go, ‘I don’t know what is going to happen, but I’m going to focus on the now and where we are going to go with tomorrow.’ That will work best with the children.
Be vulnerable and bring it back to what you can control in small measures of time, that will work best because if you try to make the answer and figure out the answers down the road, you’re just going to be beating your head against the wall. And that’s not helpful for anyone.
To learn more, visit Fight CRC.