Telling your child you have cancer

How do you do it? What words do you use? Do you use the word cancer? How age appropriate is it? What age is appropriate to tell a child? All of the questions have been on my mind for the last 3 years. There is no manual on this, well… maybe there is but I haven’t seen it…

Ali was 1 and 3/4s when I was diagnosed. She was barely verbal. There was no way to tell her what was going on, would she even have understood that mammy was sick? How would a toddler have comprehension of such a concept? And anyway, I wasn’t sick, I never used that word. I was healing, I still am…

She knew something wasn’t right and her behaviour told us that. We moved house and she started in a new creche all within the space of a few weeks. I was on the road every day of the week attending appointments to help me heal and when I was at home, I was doped up on cannabis oil. Mammy wasn’t present. She felt it. She would scream at anyone who came to the house until they left. It was hard on her.

Roll on 10 months later and the trips to Turkey began. Again, mammy wasn’t present. I spoke to her on video calls every day and she wouldn’t even look at the phone. She protested almost every time. It was difficult for both of us. At this stage she was 2 and 1/2.  Again, how do you tell her? She knew I was going to Turkey and we told her I was going to see the doctor to get better. I’m not sure how much she understood again but she loved to see me coming home, presents in tow every time. Compensating for my absence.

My hair fell out two weeks after I began treatment. So we shaved it off in her presence and she helped me put it in the bin. We normalised it, she didn’t get a shock seeing mammy with hair one minute and none the next. She was part of the change.

When she was 3, I brought her to Turkey. She met my medical team in person, she had seen them all on various video calls, when she gave a few seconds of her attention. She finally got to see where I’d been going. She was on an adventure. Still, we didn’t mention cancer. Mammy was better now.

The trips to Turkey stopped and we had some time. Results were good and life carried on. No need to mention cancer now. And then it came back. And chemo was on the cards again. And my hair might fall out and I might get very sick and maybe now, I might have to tell her. Afterall, she’s 4 and 1/2 at this stage and probably a bit more able to understand.

So what did we do? Well I looked up some books online because it’s probably easier to explain something to a child using a story they can relate to. But it’s hard to judge a book by it’s cover and I struggled to pick one so I contacted a girl I met who has a book shop and specialises in books which cover topics such as living between two houses, having two mammies or two daddies, moving house, moving school, friendships, feelings etc… She has some pretty amazing books and I got one about starting school for Ali a few months ago which was a really great introduction to what it would be like. I asked her if she had any books about telling children about cancer. She didn’t but she went on the hunt for me and sent me a great book called ‘Big tree is sick’.

The story is an analogy for cancer and cancer treatment. Big tree gets woodworm, the doctor gives him medicine, cuts off one of his branches to stop it spreading, he gets weak, loses his leaves and he finally gets better. We read it to her every day and night for about a week and then I told her that mammy is like big tree and that I have to go to the doctor and the hospital for medicine. I haven’t lost my hair or been really sick but if I am, I’ll refer to the book. I haven’t used the word cancer with her, mammy has woodworm that the medicine is making better.

So we’ve made a start, she’s kind of in the know now. I have no idea whether it was the right or wrong way to go and I hope that by withholding it until now hasn’t messed her up in some way. It’s hard to know what’s right and what’s not and I guess when they’re very small, it’s just impossible to tell them anyway. I don’t know when we will use the word cancer or if we ever will, it doesn’t seem age appropriate at the moment given the fact that the word is loaded with fear and sadness.

I’d love to hear your thoughts on whether you’ve had to tell a child about an illness, what was appropriate for you and what was the fall out, positive or negative…

 

This essay is taken from my Patreon site where I publish the majority of my writing.

2 Comments »

  1. Hi Mairead, Carolina here. You do not know me but I do know your name from Dr. S in Turkey. I was about to email you when you said you had a recurrence… Then I decided not to but started following you. I cannot help answering this post as I have been and still are in more or less the same vessel.
    I have been a homeschooler at a farm in Tierra del Fuego, Argentina, a boatschooler in the Pacific Ocean for a year and a half and a homeschooler at a remote farm in New Zealand. At the time I was diagnosed with stage IV invasive breast cancer in April 2017, the girls were 9, 11 and 13. Now we are living in Italy.
    Luckily, maybe because I was with them 24/7 for much longer than you ( and gosh, how much I thank that time of togetherness!) the girls were already very accustomed to hearing me telling the whole truth, even if it was rough. I told them, may be a bit bluntly, that I had cancer and had no idea what we were going to do but I told them that I would kick and kick as much as the Frog in the story that fell in the pail of milk. We have also read them stories to overcome difficult situations, I have always believed in the power of storytelling.
    I think your idea of reading a story like “Big tree is sick” is awesome but stillI I would tell her the real truth with the real words. Ali is small but children her age understand much more than what we as adults can imagine. They might not understand the meaning of many words but definitely they can understand what we hide, what we don’t say, what we fear… They have the ability to smell, feel and look beyond the sound and the meaning of words.
    So, as they might not understand the meaning of words like ‘cancer’ and all the heaviness and darkness that it brings when it sounds, it is our chance to pass on to them the message that we want them to grasp. The message is simple, not fun though, but very simple. One needs to get treatment, use endless hours to do integrative cures, sleep more and be away from our children in order to do our best to become better and live a longer life with them. They need to know that they will be safe and how, that’s all. They need to know that we love them. They also need to know who will be taking care of them while twe can’t .
    I would not tell Ali much about how long the treatment will be because future for a kid that age is too complicated to understand. Just now, simple, short and sweet… as sweet and as light as it can be said…
    At the end of your post you say ” I hope that by withholding it until now hasn’t messed her up in some way” I think we, humans, have always left things unspoken and there are so many quotes and writings about unspoken words… I think therefore it might be also healing and good for you to tell her the straight forward truth. You also say “it doesn’t seem age appropriate at the moment given the fact that the word is loaded with fear and sadness” I think it is a pity that we were not taught to deal with death more lightly because as soon as we start living we are facing the possibility of death. And death is certainly another possibility, it is inevitable to know it, maybe you do not need to tell her that, I told my girls at a time that we did’t know if I would live longer than a month or not and I still tell them that inevitable outcome. But I do not put the emphasis on death, I put it in hope, will and fate ( I’ve seen so many already who did everything well, had hope but died anyway and also some who don’t take care of themselves well and are still alive…) I have decided that for as much as I live I would like to give the example of that little frog that kept kicking with the same uncertainty and perseverance and hopefully with the same outcome!
    Be well, all my love, Carolina.

    • Thank you so much Carolina, I love the analogy of the little frog kicking. I am planning on bringing Ali to play therapy in my local cancer care centre when she turns five. She is a very well adjusted little girl and so happy in herself. I’m sure with the right guidance and appropriate language, we’ll get there! Keep on kicking! I will too. Thanks for getting in touch! x

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