Grace Zuzu’s story

Est. read time: 4-5 minutes.

A bereaved dad says he and his family felt “blessed” to have the invaluable support of East Anglia’s Children’s Hospices (EACH) when daughter Grace Zuzu died in May 2022.

Grace was just 21 months old and it followed a six-month battle against a rare and aggressive type of brain tumour, embryonal tumour with multi-layered rosettes (ETMR). She received end-of-life care at The Treehouse and the team were able to provide vital support to step-mum Cerys and dad Andy.

“We can’t imagine going through that chapter of our lives without EACH,” said Andy, who lives in Holton St Mary, on the Suffolk-Essex border.

“The Treehouse will always be a special place for us and we feel so lucky to have had it on our doorstep. It was there when we needed it and going through everything without such incredible help and support would have made it a very different experience.

“In so many ways, it’s the last place any parent wants to find themselves. However, given what was happening, and the cards we’d been dealt, it was the best possible place to be. It was weird at first, coming from a busy hospital setting. It felt strange not having to talk about treatment schedules and being surrounded by the noise of the ward.

“However, after a period of adjustment, being in a peaceful place where it was possible to do normal things gave us the time we needed to make the most of the last few months with Grace.”

Grace was a perfectly normal, healthy baby when born in August 2020. However, she became ill in November 2021, while at nursery, and was taken to Ipswich Hospital.

“Everything happened so quickly and was completely full-on, from that moment onwards,” said Andy.

“Grace had a CT scan which revealed pressure on her brain and a tumour was identified. However, even at that point, we were hopeful everything would be fine.

“We were told it was a case of removing the tumour and then having a course of chemotherapy. However, there were various complications during many rounds of surgery and they couldn’t fully remove the tumour at Addenbrooke’s, despite the great skill and care of the team there.

“There was a glimmer of hope in the form of a possible operation being performed by a specialist at Alder Hey Children’s Hospital, in Liverpool. The precise form of cancer still hadn’t been diagnosed at that point – it was one of either two grade four types – and for anything more to happen she had to start responding to treatment.

“Unfortunately, that didn’t happen. Chemo made her horribly sick and, basically, everything that could possibly go wrong did go wrong; there were so many complications.

“In January 2022, we were told the tumour was still growing and that it wouldn’t be in Grace’s interests to continue her treatment. It was at that point we were told about EACH.”

Andy admits that it took a couple of weeks to come round to the idea of end-of-life hospice care.

“At first, our initial reaction was ‘no way’,” he said.

“It felt like giving up and we wanted to keep talking about treatment, not hospice care. We wanted to carry on fighting and explore different types of treatment.

“However, once it had sunk in, we visited The Treehouse and instantly knew it would be in Grace’s best interests to be there.

“It also meant Cerys could finally be with us again, as the Covid restrictions at Addenbrooke’s made visits for family impossible, to protect the vulnerable immune systems of those on the children’s cancer ward. I lived full-time at the hospital and to have our support network back definitely helped Grace and I immensely. The unfamiliar faces suddenly melted away into comforting, familiar ones.

“We spent time outside in the beautiful garden and were able to play music and do some painting. Grace wasn’t able to participate too much, of course, but we could see from her face that she was getting something positive from it. Her cheeky smile started to return.

“It was also great that family members and friends could come and go, which, in turn, meant we were able to pop for a quick walk and clear our heads without feeling guilty.”

Andy and partner Cerys are getting married at the church in Holton St Mary next September.

“Grace is buried at the churchyard there, so we wanted to have the wedding in Holton St Mary so Grace could be with us too,” said Andy.

“It’s going to be very special and emotional and I’m so lucky to have the love and support of someone like Cerys, who was an amazing step-mum from the moment Grace came into her life.”

Published in September 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

We can’t imagine going through that chapter of our lives without EACH.

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