Ringing the bell of hope – bringing joy to children with cancer during lockdown

By Lucy Ashton

For many families, it’s not just a bell, but a symbol of hope. A hope that with the end of treatment, they can mark a new, more positive phase in their cancer journey.

During lockdown, staff at the Royal Hospital for Children in Glasgow have been working hard to ensure that while there are restrictions in the wards, children and families can still have their ‘ring the bell’ moment at home.

Two years ago, Dara Monaghan was a typical 6-year-old who loved nothing more than her gymnastic sessions and seeing her pals. She had a recurring cough and suspected sleep apnoea. A surgeon’s routine check of her vocal cords and an MRI then discovered a rare low grade brain stem glioma. For mum, Sarah, it was every parent’s worst nightmare.

“It was a big shock, it felt like everything in our life just disappeared,” Sarah explains.

The diagnosis was in May 2019 and chemotherapy treatment began the following month.

“We were terrified, because at the start they told us she might die, but you are doing your best because you don’t want her or her brothers to be scared. You don’t have a choice – you have to just get on with things.”

Sarah was as honest as possible with Dara and her brothers, Riley, 13 and Ciaran, 5, explaining the treatment and using YouTube videos to demystify treatments and procedures.

“It really helped her in the ward,” says Sarah. “She was always really happy and tolerated her treatment really well, skipping up and down the wards – all the nurses loved her. She just got on with it. Throughout it all the staff have been just brilliant, everyone knows Dara by name and they all make you feel so welcome – it just makes a stressful situation so much easier.”

During lockdown, and having to shield, the close-knit family became ever closer but the COVID restrictions meant that when Dara’s chemotherapy treatment finished in February, the opportunity to ring the bell on the ward was not an option. Instead, the celebration was had at home in Dumbarton. Sarah explains: “The team posted out the bell and a little t-shirt and we had a tea party and balloons and made a big deal of it and she was really happy with that.

“She was really delighted to be getting to the end of treatment and getting her line removed. She was really looking forward to being able to have a bath and go for a swim – starting to feel more normal.”

Dara at home ringing the bell

While it might not mean the end of their cancer treatment, ringing the bell can mean the end of one part of the cancer journey.

Jamie Redfern, Director of Women and Children’s Service at NHSGGC, adds: “We’re delighted that Dara and her family have been able to ring the bell at home as they mark the end of one part of their cancer journey.

“It’s often such an emotional moment and in the hospital environment it is something that brings tears, smiles and usually hugs with families, children and the doctors, nurses and teams who support them.

“With the COVID restrictions we’ve not been able to do that within the ward, but we are delighted that bells have gone to families to recreate the experience at home.

“Throughout COVID, we’ve been working incredibly hard to look after all of our patients with cancer and while, for some, ringing the bell doesn’t mean the end of treatment, it is a mark of hope for what lies ahead.”

In Dara’s case, while there is hope for the future, she will require close monitoring and there is no accurate prognosis. The tumour has shrunk, but she will continue to be scanned every three months.

Sarah concludes: “We still have a lot of fear for the future – it’s still there. I’m hopeful that she will be fine and be okay, but we try not to dwell on it. We have what we have just now. I think if you dwell on the ‘what ifs’, you can miss out on a lot of life that’s happening now.”

 Dara before her illness, playing in the garden.

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