‘We were derailed from our own lives’: The mental toll of child cancer diagnosis

Psychological blow of cancer often only manifests itself when life ‘returns to normal’

Speak to anyone who has come through cancer diagnosis and treatment – or is a parent of a child with cancer – and they will tell you that the impact of the traumatic experience often only hits home when medical treatments have finished.

Often the stress and busyness of managing hospital appointments – together with the supports offered by family and friends – give people the ability to cope.

In other words, the psychological blow of cancer often only manifests itself when life is expected to return to normal.

People are sending you dinners and cleaning your house, but, when it all stops, you are expected to 'be normal'

"Your hand is held throughout the medical treatment. People are sending you dinners and cleaning your house, but, when it all stops, you are expected to 'be normal'," explains Deirdre Leahy, whose five-year-old daughter, Corlaith was diagnosed with and treated for a brain tumour in 2021.

The Leahy family got the devastating diagnosis that Corlaith (then four) had a malignant tumour on her brain when Deirdre was 35 weeks pregnant with their third child and their middle daughter, Saorla was two and a half.

For the next four months, Deirdre and her husband Brian stayed strong while Corlaith went through three brain surgeries followed by two months of daily proton radiotherapy treatments in Germany. Their daughter Caoimhe was born just before Brian, his mother and the two older children travelled to Germany for the treatment. Deirdre followed two weeks later with her mother.

“As we settled into life in our two-bedroom apartment in Essen, Germany, we could see for ourselves the impact this sickness had on all of us. We were short-tempered and stressed with the girls, Corlaith was aggressive and angry towards Saorla, and Saorla would wake every night to check I hadn’t left her again,” explains Deirdre.

When they returned home, Deirdre realised they needed help. “Suddenly, we were at home and everything was exactly as we left it except us. We were lost and derailed from our own lives,” she explains.

When she started school, she was timid and self-conscious. She may have been spared the gravity of her illness but she still needed to process the pain of her surgeries

She signed up for counselling for herself, Brian and Corlaith (who had just started school) at the cancer support centre, ARC, which had recently set up psychotherapy for children to complement the rich programme of supports already offered to adults.

“The counselling we all received there became as important as the physical therapies and radiotherapy that Corlaith had to have. Before each session, I would ask myself, ‘what are you going to say? You’ve talked to friends and family, you don’t need to repeat yourself’ but when I was there, I knew I needed to process what happened and that I needed to find my new normal as a parent of a child with cancer.”

Deirdre says that the art and play therapies were very important for Corlaith. “When she started school, she was timid and self-conscious. She may have been spared the gravity of her illness but she still needed to process the pain of her surgeries, the separation from me when she first went to Germany and the scars this illness had left her with.

“She processed all of this in Arc and as the weeks went on, I could see the kind, patient and confident Corlaith return.”

Three Dublin centres

Yvonne Lucas, head of services at the ARC cancer support centres, explains how all their services are offered in one of their three Dublin centres – South Circular Road (near St James's Hospital), Herbert Avenue (near St Vincent's Hospital) and Eccles St (near the Mater hospital) as well as remotely.

“We set up the remote services for everything except children’s psychotherapy and touch therapies during the pandemic and we’ll continue to offer them remotely because about 25 per cent of our clients come from outside the Dublin area,” explains Lucas.

The services for children and teenagers started in September 2021, following funding from the RTÉ Toy Show Appeal. "Often when a child has a cancer diagnosis, everybody stays positive and upbeat, trying to make it fun but by doing that, the child isn't able to express how upset he/she might feel or what a bad day she/he is having," explains Lucas.

She says that when a child receives counselling, there is a ripple effect to family, friends and teachers. “Following a cancer diagnosis in the family, children can withdraw from friendships, they can act out or have behavioural difficulties in school, their relationships with family members can change, but when that child is supported with therapy, everyone else benefits as well because they can behave a little bit more normally around the child,” explains Lucas.

Supporting siblings of the child with cancer is also important. “Of course, they love their sibling with cancer and want him/her to get better but they can struggle when the child with cancer gets a lot of attention. It’s important that parents don’t turn the other siblings into little carers and give them too much responsibility. They also need small amounts of one to one time every day so that they don’t feel forgotten.”

As well as one-to-one creative psychotherapy for children and teenagers, ARC runs a group support programme for children aged between 5 and 11 whose parent has been diagnosed with cancer.

“Children can sometimes think they are to blame if a parent gets cancer so it’s important to reassure them and help them manage their anxieties,” says Lucas.

It also holds a parenting through cancer support group and in February, a parenting course specifically for parents who have a child with cancer will begin. The Covid pandemic restrictions over the last two years resulted in parents of a child with cancer missing out on any casual interaction with other parents.

“Sometimes, parents become scared of parenting a child with cancer because of the extra guilt and complexity. But, these children still need guidance and boundaries and parents need to be able to deal with things like a meltdown when they don’t get their own way. Parents also can hear other parents talk about what worked for them.”

Deirdre Leahy says that it’s incredible how you don’t know all these services exist “until you are on your knees”. “Arc was the missing link which is no disrespect to all the medical treatments Corlaith received.” She says that Corlaith is back living her life to the full.

“She has ballet on Friday and gymnastics on Saturday. She owns what happened to her now. She is a lot more open with people. We are going on holidays in March and she tells everyone that she will go in for her scan a week before we go.

“I was angry about not having all of the joy around a newborn but Caoimhe is the calmest, smiley, easiest baby and a great distraction for us all. Her sisters adore her and the novelty of having a baby sister hasn’t worn off yet.”

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