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How Do You Tell Your Kids "Dad Has Cancer?"

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Published on August 31, 2020

Deciding the Best Way to Tell Your Children That a Parent Has Cancer

Diffuse large B cell lymphoma patient Ian Spencer as well as his wife and care partnerHeather join Patient Power Co-founder, Esther Schorr to discuss how they decided to tell their five children about Ian's cancer diagnosis. They explain the difficulty of deciding what information to share, how their community banded around their family to offer support and the emotional toll of not knowing if you will make it to the next big family milestone. Watch to hear their full story.

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Transcript | How Do You Tell Your Kids "Dad Has Cancer?"

Talking with Children About Cancer

Esther Schorr: 

Hi there. This is Esther Schorr with Patient Power in Northern California this week. I have with me today Ian and Heather Spencer. Ian was diagnosed in 2014 with diffuse large B-cell lymphoma, and he did go through a failed course of chemo, but then found a clinical trial that has been very promising in its outcome. Today, though, we're going to talk with Ian and his lovely wife, Heather, about how they managed to talk to their kids about this situation. They're now grown. They're up in their late teens and into their 30s, but they were quite young when you were diagnosed, Ian. Is that correct? 

Ian Spencer: 

The youngest was 13, and our eldest then would've been 25. 

Esther Schorr: 

You knew that you had a serious diagnosisAt what point did you decide that it was time to talk to the kids about it? 

Ian Spencer: 

I think we involved them virtually from the start, that I was going for tests, and that there was a concern. But right away, from the start, we decided it was far better that the children knew what was going on, rather than pretending there was something going on in the background they didn't need to know about.  

Heather Spencer: 

We were very open with the children, but we only really told them, in one sense, what they needed to know. At that stage, we'd been given a lot of hope that the chemotherapy will be a successful treatment, and so, we tended to big up that sort of positive message, really.  

Ian Spencer: 

Yeah. 

Heather Spencer: 

That whilst dad had this, and potentially, it was serious, that, in most cases, it was very treatable. Because that's the message that we'd been given and that's what we were holding onto. At that stage, not all the children were living at home. We'd got one at university. We'd got the eldest one was married, and I think it affected, obviously, them far less because they weren't living with us.  

Esther Schorr: 

So, there was a turning point when the initial chemotherapy, when it was clear that wasn't working and you had to start thinking about a clinical trial.  

Heather Spencer: 

That was a very bleak time. 

Ian Spencer: 

We told them that the prognosis wasn't good, and that, basically, that the trial drug was almost a last shot and that just sort of prepared them for whatever happened. However, because in myself, I was better from the point of view of day to day, and rather than just lying around on the settee or on the bed for the most of the time, I was able to get up and do things. That gave them, I suppose, a little bit more hope because they could see I was interacting more with the outside world. 

Esther Schorr: 

What was the kids' participation at that point?  

Ian Spencer: 

They were supportive of each other. I think that they didn't know quite how to handle me, and they knew that Heather was suffering as well, but they were very good in supporting each other. Our youngest two had an opportunity of having some counseling at school, and that helped them.  

Heather Spencer: 

I do remember, particularly with my son, who's the youngest, asking the inevitable question: is dad going to die? How do you answer that question? All we could say was is that we didn't know, and that this drug had been offered to us, and that that was and avenue of hopeWe were part of the church, and the church was very supportiveIt also made us very close. I mean, I was fortunate not to be working, so in terms of them needing to support, in terms of me all around the home and so on, not an awful lot changed there. 

Ian Spencer: 

I think, also, that there were people who actually got a lot out of supporting us. It was a two way. We didn't realize that, at the time, but many people were blessed by being a support for us.  

Esther Schorr: 

So, you're here talking to us today about all this, so you clearly did a lot of things right. Is there anything, when you look back, that you wish you knew at the beginning? 

Ian Spencer: 

If we knew what was coming up with the treatment, certainly the chemo at first, then I think we would've possibly said a little bit more. If they'd understood the cycle where I was better and then not so good, and then better and not so good, that might've helped them to sort of know how best to interact. 

Esther Schorr: 

So, Ian, I know there was a point during your treatments, the chemotherapy, where your doctor told you that it really wasn't working, and there was something wonderful that was going to happen in your family.  

Ian Spencer: 

Yeahmy eldest daughter announced that she was expecting our second grandchild. And I realized that there was a great possibility, that, actually, I might not live to see him being born. So, that was a big moment, and I'll never forget the... We went to see my daughter having given birth, and she couldn't understand why I was in floods of tears holding this little man in my arms. And of course, each time I see him, including on his fourth birthday, four years later, he is alive and kicking, and so am I.  

Esther Schorr: 
I want to thank both of you, Ian and Heather, for being so willing to share a personal journey with cancer and how your family worked together to be where you are today. So, thank you very, very much.  

Ian Spencer: 
Our pleasure. 

Heather Spencer: 
Thank you. 

Esther Schorr: 
This is Esther Schorr from Patient Power and remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


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