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Wales Online
Wales Online
National
Ruth Mosalski

How an extraordinary school put its arms around a 4-year-old when she got a terminal brain tumour

Ania was a dinosaur-mad four-year-old, who loved her school when she started having headaches

Doctors then had to tell her family her headaches were being caused by a terminal brain tumour.

In the months of 2020 that followed her diagnosis with a DIPG brain tumour, teachers and pupils at Ysgol Esceifiog on Anglesey came together in a way that would have been remarkable before the pandemic, let alone while dealing with ever-changing issues the pandemic threw at them.

Headteacher Llinos Davies said it was a rollercoaster of a time. "We went from being school staff to key workers to educating and looking after the whole community. I had staff working long hours in roles that we're not used to.

"School life was extremely challenging and we thought that coming back in September we thought life might be a little more normal, with some hope we were going to have a live Christmas concert this year. And as a term went on, we saw we were still in our bubbles, we're still separating who uses which toilets, staff were all having dinner apart. It was we all felt quite lonely in a very challenging situation.

"And then our lives just got turned upside down when we received the phone call".

Ania had been complaining of headaches and had been sent to hospital for a scan. As it was due to be the October half term Llinos called her mum, Sian, to check how it had gone when she was told the devastating news it was a tumour, which was terminal.

"I told the family 'I know we're in lockdown, I know we've got lots of restrictions going on but we'll follow your lead. If you want Ania to be in school, we're more than happy and we'd be privileged to care for her, but if you want to her at home that's fine'. Lots of parents could have easily said we're going to just look after her ourselves and we don't want to have her to be she could be at risk of Covid in particular, but she loved school so much that the family were happy for her to continue to come to school."

Ania loved school so much she would go to England for treatment first thing in a morning and then go back to school in the afternoon. "It wasn't a case of 'no we can't' it was 'how can we make this possible' and making sure that we could make it as happy as possible for her but her friends as well because really, we're all going through it together".

She was asked to choose pillows and cushions she wanted when she needed some rest.

"The children knew Ania had a 'popo' - a children's Welsh word for injury - in her head. That was the word Ania said but we had to be quite sensitive in the words we use because some children would fall and say all I've had a popo on my knee or do I need to go to hospital as well".

The school did its first fundraiser, with children walking or running the equivalent number of miles of Ania's trip to the hospital in the Wirral when her treatment started in November and Llinos was determined to include all the children and staff, and crucially Ania's family, who gave their blessing before any activity. The money raised was given to them to help with travel or costs linked to her treatment.

Ania, who Llinos described as "dinosaur mad" was also a pink dinosaur in the school Christmas concert, but it soon became clear that the family's hopes for things like a trip to Lapland was impossible.

"As a family they were trying to make all these memories and things like a trip to Lapland were totally off the cards due to not being able to fly so we bought Lapland to school. We got a company to help us with artificial snow. The Holland Arms garden centre couldn't have a Santa's grotto so we borrowed their decorations and then all the staff on a Tuesday night, transformed our school hall into a winter wonderland and it was beautiful."

When the pandemic stopped her going to Lapland, the school brought Christmas to Ania (Ysgol Esceifiog)

The council helped ensure it met with Covid regulations and Ania and her sister Ria-Lyn's class were allowed to play in the school, and all the children could enjoy the wonderland.

Ania's face when she saw the hall was "magical".

"That was the first day where we we saw anything was possible. We knew we couldn't make her any better but not just for Ania, but her sister and her best friend, and all my staff, we thought we could do things to make sure the school was as happier place as possible."

Planting flowers in the school grounds (Ysgol Esceifiog)

The Christmas and January lockdown saw the school closed again, but her class teacher kept going to see her in the garden and then when they finally were allowed to return to school, what Ania wanted, within the Covid rules of course, happened.

"Everyday she'd come up saying something like, 'Oh, I'd like a donut day' so everybody would have donuts and she would love making hot chocolates. One day myself and the deputy were in the middle of a really important meeting one day and she came in with hot chocolate for all the staff as well. She loved her pyjamas so we had things like pyjama days and the children weren't questioning it. It was just like, 'this makes us happy, so we're going do it'."

Staff at Ysgol Eceifiog on Anglesey have been nominated for a St David award for the help they gave one of their pupils when she was diagnosed with a terminal brain tumour (Ysgol Esceifiog)

One special day was in April when they all planned a party for the baby bear from Goldilocks and the Three Bears, a book they were reading at the time. At a time all the children had missed parties due to the pandemic, it was a party for all of them, but held in the week of Ania's fifth birthday, so she got a seat on the top table, with baby bear, both surrounded by '5' balloons and a photo booth.

"It was really magical that we as a school could do that, but we obviously did hope she'd celebrate her sixth birthday."

(Ysgol Esceifiog)

Ania's last full day at school was a special one. Described as "Diwrnod Hwyl a Lliw" (fun and colour day) where parents donated flowers, compost and pots. Ania's parents bought two rose bushes and Ania and Ria-Lyn, then aged seven, planted those. The roses have pride of place in school still and the children still ask when the next Diwrnod Hwyl a Lliw will be.

"That day, the children were all out together. It was a beautiful, sunny day and it was the first day the staff felt like we were starting to be a school again. We were all outside, we all still in bubbles, but we could see each other we could talk to each other and it was the first proper day that they all got to mix and see Ania as well."

Ania and her sister Ria-Lyn with rose bushes which are in pride of place at the school (Ysgol Esceifiog)

After that, she wasn't well enough to be able to complete full days. The school had got additional funding for one-to-one care because the tumour affected her balance and on one visit, she was able to help prepare for the new outdoor classroom.

Funded by the governors to help with the restrictions due to the pandemic, it was named after her love of dinosaurs as Ty Rex and as T-Rex was her favourite dinosaur, she was asked to design the Rex. She said it had to be a happy, not ferocious dinosaur, picked a pink dinosaur with yellow splodges and a black belly. That was then immortalised by a local graffiti artist into a big sign and Ania was there to see him create that, picking exactly the right pink for the dinosaur. That was her day at school.

Ania and friends helping design Rex, the logo for the new outdoor classroom (Ysgol Esceifiog)

It was in June that Ania passed away aged five.

Staff were told but carried on as normal for the children even though they were totally devastated

As news made its way round the village, if a child asked, the teachers confirmed it quietly, with no fuss and those who needed it could see the school's trauma informed school practitioner in the school. "We were honest with them without scaring them," she said.

"As a school, we're going through the grieving process all together and it's like tidal waves. It's like a tsunami that will hit some days without any warning but because we've got all these memories. It does help it we can talk about the happy times. We have a special tree too, that is lit up in the school hall and we’ve filled it with pictures of Ania and our special memories"

Her school has been nominated for a St David Award for the things they did to help her, her classmate and family (Ysgol Esceifiog)

The school had access to special support to help them both in terms of helping Ania and the other children but each other. There was a social worker through Young Lives vs Cancer working with staff and the family and counsellors from the Joshua Tree charity.

Llinos was given supervision through trauma informed schools, paid via their local consortium so she could be prepared to help pupils and staff alike.

"It helped me on a personal and professional level because the day of the phone call to tell us that little Ania had passed away, I look back on it, and I just think I'm not sure where the strength came from. It's a day that I had prepared for in the back of my mind, hoping it was never come but also knowing statistically it was and quickly."

After Ania's death, the family were presented with a package of pictures and videos of Ania so they have happy memories to look back on, and now the amazing work of the school staff has been honoured with a nomination for the St David Award, in the key worker category.

It's something that makes Llinos incredibly proud and is, she said, testament to the love and support for Ania who really was "who lit up a room, and had an infectious smile".

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