'GOSH shone a light through the darkness of my baby's cancer'
Bouncing on the trampoline in her garden, eight-year-old Eden Eyre laughs and plays with her younger siblings in the summer sunshine.
A picture perfect scene, it’s hard to believe there was once a time when Eden’s life hung in the balance, her young body ravaged first by a rare, aggressive cancer and then by the gruelling treatment necessary to save her. “I look at her now, so energetic and happy, and the year-and-a-half spent fighting cancer almost feels like a bad dream,” says Eden’s mum Emma, 37, from Brentford, West London.
“And yet, as crazy as it might sound, we also have many positive memories of that time, because Eden was lucky enough to be treated at Great Ormond Street Hospital (GOSH) and as a family we experienced what a special place it is. “Now, if you ask Eden about when she had cancer, she barely remembers the injections, medicine and pain she experienced.
Eden receiving treatment at Great Ormond Street Hospital (DAILY MIRROR)
Eden received 17 months of chemotherapy treatment (DAILY MIRROR)“Instead, she remembers making slime and crafting with glitter, and ‘ringing the bell’ when she finished her treatment. As a parent, it means so much to me that she’s come through that terrible time with such joyful memories, rather than dark ones.”
Eden first became ill in May 2017, when she was two, and for six weeks Emma took her back and forth to the GP with symptoms that included constipation, loss of appetite and lethargy. “Repeatedly, I was told she just had childhood bugs and viruses but as the weeks went past, and she grew weaker and sicker, instinctively I knew it was more than that,” says Emma, who is a part-time special needs teacher and also mum to Willow, six, and Reginald, two.
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Eden and her baby sister Willow (DAILY MIRROR)
Eden remembers her time in hospital playing with glitter and slime (DAILY MIRROR)In July 2017, Eden was admitted to West Middlesex University Hospital and tests revealed a mass in her abdomen. “My partner Billy and I were told it may be cancer but she needed to be transferred to GOSH to confirm that. It’s hard to put into words what it feels like to hear your tiny child may have cancer. It felt like the world was falling apart around us.”
Emma describes Eden’s admission to GOSH as like being “wrapped up in support and care”. “From the moment we arrived, I felt reassured we were in the best place and that the nurses and doctors cared deeply about both Eden, and us,” she says. “Absolutely nothing can dilute the terror you feel when your child is seriously ill, but I knew they would do everything they could for Eden.”
Further tests and scans confirmed that Eden did have cancer – neuroblastoma, which is a rare childhood cancer that forms in nerve tissue. Around 95 children are diagnosed with it each year in the UK and it has one of the lowest survival rates of all childhood cancers, the five-year survival rate is just 67 per cent.
“It was devastating news,” says Emma. “Eden had a 15cm long tumour in her abdomen, which is roughly the length of a banana, and when a biopsy was performed, it irritated and disturbed the tumour. It began to expand and this caused her diaphragm to be pushed up and that put pressure on her respiratory system. She was struggling to breathe and watching her little chest pump up and down so fast, I was so scared we were going to lose her before she’d even started treatment.
Mum Emma with her two daughters Eden and Willow and son Reginald (DAILY MIRROR)
Emma said she had to split her time between Eden in hospital and Willow (DAILY MIRROR)“Doctors explained surgery to remove the tumour wasn’t an option because the tumour had wrapped itself around a main artery between her liver and pancreas, so it was too high risk. Instead, she needed to start chemotherapy immediately, to shrink it and relieve the impact on her respiratory system. I remember asking ‘Is she going to be OK?’ and the response was simply, ‘We just don’t know, you need to prepare yourself for the worst’. That was how serious her condition was.”
Eden spent around a month as an in-patient at GOSH, followed by 17 months of regular admissions for chemotherapy, radiotherapy and immunotherapy. “I knew the treatment was saving her life but it goes against your maternal instincts to see your child so weak she could barely lift her head off the pillow at times. I used to call the drugs ‘magic poison’,” recalls Emma.
“When Eden was diagnosed, her younger sister Willow, now six, was just five months old, so Billy and I became like ships in the night, often one of us at hospital with Eden and the other at home with Willow. I felt torn between my girls, guilty that I was rarely with them both when I knew they both needed me in different ways.”
During her stays in hospital, Eden benefitted from time with GOSH’s play specialists who use toys, art and role play to support children through their treatment in a child-centred and fun way. “It’s hard to believe a child could have fun while in hospital, but Eden really did and she still talks about it.” But the staff at GOSH not only cared for Eden, but for Emma and Billy, 37, too.
Eden finished her cancer treatment in in February 2019 (DAILY MIRROR)
Emma says it's hard to believe now Eden spent 18 months fighting cancer (DAILY MIRROR)“Being the parent of a child with cancer is such a lonely experience,” she explains. “There are other families on the ward but we were all in our own boats in the same storm, and family and friends were so supportive but couldn’t truly relate to what we were going through. The nurses and doctors, and the play specialists, ‘got it’ and even simple gestures like sitting with Eden so I could nip outside for five minutes to clear my head, or go for a shower, or a hug and a cup of tea on a particularly difficult day, it made all the difference.”
In February 2019, Eden ‘rang the bell’ marking the end of her cancer treatment, a moment Emma says she’ll never forget. “I felt so emotional. There was a time I feared we’d never reach that point, I’d walk past it in the hospital and see another family ringing it and think, ‘please let that be us soon’.”
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Today, Eden is a typical eight-year-old who loves school, gymnastics and singing. “She still has regular check-ups and it remains unknown what impact chemotherapy will have had on her hormones and fertility in the future, but we’ll cross that bridge when we come to it,” says Emma.
“I feel so grateful she’s here, she’s healthy and she has a bright future ahead of her. Having a child with cancer is so bleak but GOSH shone a light through that darkness for us. Nobody can change what you’re going through, nothing can quell your fears and make it easier seeing your child weak and in pain, but they held us, and Eden, through every moment of our journey.”
■Every week, around five children in the UK lose their lives to cancer. Great Ormond Street Hospital cares for those with the hardest to treat cancers, but the hospital needs a new home to create breakthrough therapies which will benefit children all over the world. Emma and family are supporting GOSH Charity’s Build It, Beat It. The project appeals to raise money to help build a new Children’s Cancer Centre at GOSH. Find out more at gosh.org
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