On Wednesday I met a child psychologist in Crumlin Children’s Hospital as part of a routine assessment for children with cancer. My eight-year-old, Ted, is due to finish three years of treatment for leukaemia on April 27th.
The end of care can be a difficult time, she said. She ran through a psychosocial assessment with propositions I had to rate from “always” to “never”. Most were self-explanatory: “My child is often tearful”; “My child finds it easy to make and keep friends”, until, towards the end, she paused: “The next statement isn’t scored. You can just agree or disagree. Or you can refuse to answer: ‘All of this happened for a reason’.”
At the entrance to the day ward of St John’s Ward in Crumlin, mounted to the wall, is a small silver bell.
Attached to the tongue of this bell is a knotted piece of rope – just long enough for someone small to reach up and grasp. Nearby is a painted mural of animals on safari, a statement on the oncology unit’s philosophy of care and an infographic on proper hand-washing.
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The dampened sound of the bell ringing and the cheers that follow carry from the hall to the treatment rooms as children and their carers wait for chemotherapy, blood transfusions and to be taken to theatre. It’s not a commonplace sound exactly, but if you spend an entire day on the ward you might hear it.
In the days following Ted’s diagnosis that sound was a peal of hope, a tether to a future where our child might walk out of this hospital, cured. Lately it sounds a discord in me, charged with relief but also something unresolved; for everyone who rings it, there are those who never get to, or those who choose not to because celebration feels misplaced.
As more children are surviving cancer, treatment and its effects can cast a long shadow. Contrary to what we believe about positive milestones, studies have found that the bell may actually reinforce traumatic memories of treatment for some patients.
As Ted’s parent I also feel torn. But why? I’m so proud of my brave, resilient child. I’m in awe of all his body has done to heal and grow strong. Still, I don’t exactly feel like celebrating. This new peace feels delicately forged, like something that could splinter at the slightest sound.
Making meaning is how we process trauma, whether it’s lighting a candle or ringing a bell. One of the things that makes childhood cancer so hard is that it resists meaning
And for three years we’ve lived in a medicalised world. We’ve grown used to the scaffolding of weekly blood draws and reviews and the reassurance that seeing his haemoglobin on the kitchen noticeboard brings when he seems a bit tired. This one act sounds the end of those supports. It marks the end of action and the sense that everyone – the hospital, the oncology team, we, his parents – is doing all they can to keep his cancer from returning.
What happens now? He rings the bell. We cheer. We wait.
On another level, is cancer, particularly paediatric cancer, ever truly over, even when it looks like a happy ending? Is it something that children and families can ever “get through”?
People don’t like to hear this; they want to hear the bell. They want to celebrate the wins and those who fought so hard to “beat” an illness that wrecks lives. But I don’t exactly mean this in a bad way.
In many ways we coped by not treating leukaemia as something to “get to the end of”. I imagine that’s how we’ll cope with the uncertainty that’s surely coming. What comes next has no protocol or timeline, but we can’t let the fear of relapse destroy all that we have today.
In 2023, our good friend Tere died of breast cancer, leaving behind her husband George and two small girls, Cristina and Nona. She was 39. While visiting us last spring, George spoke to me about attending support services with Tere in the months before her death.
Many of those with cancer and their caregivers spoke about the illness as something to be endured in order to return to their normal lives. At this stage they knew Tere’s cancer had metastasised. For their family there would be no returning to normal, no fighting or ringing of bells. This was all they had.
Last week, we traced a route by train from Germany through France to Spain where George now lives with his daughters. Travelling abroad this summer is just one of the things we’ve been afraid to do while Ted was in treatment. This feels like something to celebrate.
Walking to school with him today I ask about April 27th. How would he like to mark the end of treatment? Would he like to ring the bell? Have a party with friends or his football team? Give presents to the nurses and cleaners and doctors who were so good to him? “Because you know ... you’ve been through so much and been so brave.”
It’s really not that big of a deal, he says, playing it cool. He’d like some spending money for his holidays in Spain.
Making meaning is how we process trauma, whether it’s lighting a candle or ringing a bell. One of the things that makes childhood cancer so hard is that it resists meaning.
We might rationalise our own disease in terms of challenges or setbacks or lives well lived. We might say “this made me stronger” or “it taught me what truly mattered in life”. But when children get sick or even die, it defies a story or ending.
Did all of this happen for a reason? No. There’s no easy story to tell. And maybe no easy ending.
Rachel O’Dwyer is a writer and a lecturer in Digital Cultures in the National College of Art and Design, Dublin
