My Story: Parenting through Terminal Illness

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In March 2021, my children’s father was diagnosed with oral cancer for the second time in 15 years. The first time he was diagnosed, we were just starting our journey as a couple. That very first 10-hour surgery took out part of his tongue, and he underwent weeks of radiotherapy after that. Thankfully, he managed to recover. He had to learn to speak, eat and drink again, but we got through it, and got married shortly after.

Every year since, he’s had to undergo a CT scan to make sure the cancer did not reoccur. The first few years were nerve-wrecking. We held our breath each time waiting to hear the results. But one year passed. Then two. Then five. We started to breathe easily again. 15 years passed where we lived in New Zealand and then moved to Germany. Our focused shifted to our children, one of whom has a rare genetic disorder called Williams Syndrome and took a lot of our emotional and physical energy to parent.

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For many years, the question of the cancer returning wasn’t even in our heads. We had other things to deal with. But one day, it did. With a vengeance. This time, the 15-hour surgery took so much of my husband’s tongue that it left him unable to eat or drink ever again. He came home after six weeks, scars all over his face and neck, a feeding tube in his stomach, a shell of who he used to be. Months of radiation and chemotherapy followed. But it still wasn’t the end. The cancer kept returning and spreading. Another surgery followed, and another. In 2021, my children’s father was in the hospital for at least half the year, undergoing surgery, chemotherapy or various other treatments to keep him alive.

He is still alive. But his time is running out.

How to talk to kids about terminal illness

As parents we want to protect our children from all that is bad in this world. My boys were only 7 and 9 when my husband was diagnosed a second, third and then fourth time. On the flip side, they were already 7 and 9. There was no shielding them from all that was happening. But how much and what do children need to know?

1. Be honest

I started with honesty. My children knew something was happening, especially since their father was hospitalised for so long after that first surgery. He’d never been away for longer than a few days. I was a nervous wreck, worried and afraid for all our future. Telling my kids what was going on, that their father was really ill and needed to be in the hospital for a while, helped them to understand my reactions. I didn’t talk about cancer, because they were too young to know what it meant. But once I understood the severity of his second diagnosis, I explained to them step by step what was happening. That the surgery left him unable to eat or drink. That he may have difficulty speaking. That he may look different when he comes home. That he will have to spend a lot of time in the hospital to get better. That he may never get better.

2. Hold space for their feelings

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Children may have similar feelings to adults after hearing that their loved ones are ill. These can include shock, fear, anxiety, sadness, anger, or loneliness. These feelings may come and go. Allowing your child to feel whatever they are feeling, and holding space for their emotions can be the best comfort. I told my sons that it was okay to cry and to be angry and sad. But that it was also OK to go to school, to have fun with their friends, to feel both happy to see their father and sad at what is going on, at the same time.

3. Expect difficult questions

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Your child might ask questions right away or want to talk later. You may need to answer the same questions over and over again while your child comes to terms with what is happening. I did not talk about death at first, but my son understood that it was a possibility. I offered only simple and short explanations and only when he asked. It doesn’t help to offer lots of explanations if your children aren’t ready to hear them. At some stage, they are likely to ask why this is happening. This may be a question that you are grappling with yourself and how you respond will depend on your belief system, but the important thing is to let children know it is okay to talk about it.

4. Tell them what to expect

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Prepare children by explaining how the illness might affect the person in the days ahead and what treatment they may have. For example, in my husband’s case, I had to explain that he was no longer able to eat with us and why. We showed them his feeding tube when he came back from the hospital and how it worked. We explained why he walked around with a spit bucket as he was no longer able to control his saliva because he couldn’t swallow. We told them that he wasn’t able to participate in a lot of our family lives any longer due to his illness.

Still the dad they love

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Our lives have been completely overhauled since the cancer diagnosis. For most of 2021, I found myself a single mum taking care of my two boys, as my husband battled for his life. While he is currently in partial remission after the third surgery and chemotherapy treatment in a year, there is no doubt that the cancer will keep returning.

My children quickly came to terms with having a dad who could no longer eat or drink, who spoke funny, who could no longer take them out for meals or do certain activities with them. They got used to having a nurse come by every other day to change his bandages. To seeing him feed through a feeding tube. To asking where he is and hearing that he was in hospital again.

Living with a terminal illness has been a huge adjustment on everyone. But for all my fears and worries as to how my children would take it, whether he was bed-ridden or unable to speak or eat, to them he was still just the dad they love.

By Jo Lene Mahon

Jo Lene is a single mum with two rambunctious boys, who have recently moved back to Malaysia after living abroad in New Zealand and Germany for nearly 20 years. She’s a special needs advocate for her son with Williams Syndrome, loves traveling, writing, books, and ending the day with a glass of Riesling. 

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