Posted on Wednesday 23 September 2020

Aurora-Grace’s story: ‘We went from thinking it was a bit of bloating, a bit of wind, to suddenly ‘this is a serious problem, this needs to be looked at’

At just two weeks old, Aurora-Grace was diagnosed with neuroblastoma after her Mum, Emily, noticed her stomach had swollen when she was changing her nappy. That day, they visited the GP who suspected it was wind but said to get it checked just in case and two days later they received the life-changing diagnosis.

This Childhood Cancer Awareness Month, Matt and Emily are sharing their story to shine a light on the experiences of young cancer patients and their families.

“Aurora-Grace was born in February 2019 and in March of the same year at 2 weeks old she was diagnosed with neuroblastoma. It was quite out of the blue, wasn’t expecting it and didn’t know anything about it. We were chucked into this world of childhood cancer unexpectedly and unplanned.

“It was Mother’s instinct. Emily noticed Aurora’s tummy was quite big one day when she was changing her nappy, she was quite bloated and hard. So we thought it’s quite strange. Initially, when we went to the GP, it was diagnosed as wind and along the lines of using different formula, that sort of thing.

“But that didn’t sit quite right and Emily wasn’t sure so she got a second opinion from another GP and he was much more concerned. Within 24 hours he said get to Sick Kids Hospital in Edinburgh and get her checked out because he wasn’t happy with what he was seeing. We went from thinking it was a bit of bloating, a bit of wind, to suddenly being ‘this is a serious problem, this needs to be looked at’.

“That was from the Thursday her being diagnosed with wind to Friday evening being in the Sick Kids and getting all sorts of checks and tests done. It couldn’t have been quicker in turn around.

“It wasn’t like we had to wait for tests and wait for weeks, it was in a matter of days. It was the Saturday we were brought into a room in the hospital and told ‘your daughter has cancer’. It was very, very quick. It was almost surreal. You don’t realise what’s happening, you just jump through it and everything’s going by in a bit of a blur.

“By the Tuesday she was getting her first dose of chemo. I think they were very concerned and they didn’t tell us at the time but they didn’t have very much expectation of her surviving – 30% was their expectation at the time. Thankfully they didn’t tell us that at the time. It was a whirlwind of emotions that weekend.

“She went through chemotherapy and that had the effect they wanted. She had four rounds of two types of chemotherapy and it was amazing the change that had in her. We lived apart, Emily and I took turns staying with Aurora in hospital but one of us had to stay at home with our four year old (Jacob) so we were having separate lives almost for a few months. But thankfully the hospital were so supportive and we managed to get through it. It was an incredible experience to go through, it opens your eyes up to a whole new world.

“By about June she was out of hospital, they were happy for her to get home and get normality back. At first it was frightening because we were becoming so institutionalised by the hospital, just so used to hospital life but it was nice they were able to say ‘go home, and see how you get on’ and that was really nice because Jacob could have his sister back and we could all be under one roof. He’s four years old. What he went through was incredible, knowing your sister’s not well and in hospital. He dotes on her.

“I’m a police officer so lockdown has not affected me personally too much, but Emily has been off work – Jacob is who it affects most because he’s not been with his friends and doesn’t have his usual routine of nursery and being with people in his age group so he’s missing out on being with other kids. We are quite lucky we live in a rural environment so we’ve been able to get outside and enjoy the countryside.

“It was a while after we met the CLIC Sargent representative first of all at the hospital and then once things calmed down and we got a bit used to the situation we started finding things, making contact with different people and discovering things so we could speak to people about what was happening. It was probably a few weeks down the line that I joined the Dads’ Mind the Chaps Facebook group.

“It was nice talking to dads and how they feel, their perspective. There’s a chap who lives in Ireland who messages me, he’s instrumental in the group, he’s always messaging people and giving updates and having that sort of person to say ‘you alright?’ I’ve actually met some dads as well that are also police officers – the police are a close family as it is – but meeting a police officer going through the same experience as you are is makes it easier.

“I’ve now seen dads posting about the beginning of their journey now and they have the same sort of questions that I would have back then, it’s continuing support as now you can help other folk that are going through the experiences you have been through. I’m still on it, I still dip in and out on Facebook. You build up that friendship online, you’ve got that connection.

“It’s almost – it sounds strange – but reassuring to know that other people are going through what you’re going through so having other people going through almost the same experiences, to lend advice and give you wee words of hope. You can share the same experiences and same sort of worries with people who are going through the same thing. People on the outside of this world of cancer don’t understand it, and I was the same before this came along I wouldn’t understand and I was scared of the word, or speaking about it but once you’re in this bubble, speaking to people with the same minds who know what you’re going through and have been through it themselves, it’s reassuring like a comfort blanket.”

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