brain cancer - brave Acacia and academy staff

Big-hearted school staff in Wistaston pedalled for almost 500 miles from Crewe to Disneyland Paris – to raise money for one special Princess.

Wistaston Academy year 1 pupil Acacia was diagnosed with an incurable brain cancer called Diffuse Midline Glioma H3K27M in September last year.

And school staff were determined to help raise money to help send five-year-old Acacia and her family to Disneyland Paris to make magical memories together.

And so far they have raised almost £15,000 – smashing the £5,000 target they had set themselves.

A Wistaston Academy spokesperson said: “Not only did we make it from Crewe to Paris (485.4 miles) we made it back again!

“Thank you so much to our school community for making this happen and for all those who have and are still donating. Acacia you are a very special little girl.”

Mum Carly said Acacia fell ill while out for a family meal as part of her stepdad’s birthday.

“The next morning we noticed a significant difference in her face. She had one eye almost closed, and her mouth was completely slanted on one side,” said Carly.

“We took her to our local doctors and they determined she had a condition called Bell’s Palsy.”

Acacia - brain tumour - wistaston

Five-year-old Acacia

Acacia was assessed at Leighton Hospital by numerous doctors, and she was given a course of steroids.

But on the morning she was due to return to school after summer holidays, Acacia was vomiting heavily and was so dizzy she could barely walk.

“I was told that it was the Bell’s Palsy, and more steroids were needed.

“I asked the doctors if Acacia could have a scan just to be sure as we weren’t convinced it was Bell’s Palsy.

“A few hours after the scan a nurse came to sit with Acacia, and I was escorted to a meeting room with a consultant to discuss the results.

“This in itself was abnormal, and I knew something was wrong. I was not expecting to be told they had found a mass on her brain.”

Acacia was transferred to Alder Hey Children’s Hospital in Liverpool.

A second scan followed and a biopsy to remove as much of it as physically possible.

“As the mass was wrapped around her brainstem, removing it all would have left her completely paralysed and so was not an option for us with not knowing exactly what it was,” added Carly.

“On the 10th September at 8am, Acacia was taken for surgery and this was the longest day of my life.

“Our little girl had 8 cannulas in her body at once all doing different things, a tube in her nose and another tube in her head. She was in a lot of pain and could barely speak.”

On 15th September the family was given the news that Acacia has brain cancer.

“No amount of preparing made it any easier, I broke down in tears and had to leave the room to stop myself being sick.

“Once I’d calmed down, I went back to the room and it was explained that she had the worst type of cancer possible, and it is incurable.

“They estimated she had 12 months but more likely 6-9 months and chemotherapy would not work so the only option was radiotherapy to prolong her life, but no cure existed for her condition.”

The condition is called a Diffuse Midline Glioma H3K27M.

The H3K27M means a mutant variation of the cancer that’s very aggressive and incurable.

“It broke my heart, 100 times more than I ever knew possible.

“The “normal” cancer I could have dealt with, it would have been awful, but a damn sight better than what she was diagnosed with.”

Two weeks after her operation, Acacia was “virtually back to her normal happy 5-year-old self”.

Four weeks after surgery, radiotherapy started – 13 sessions over 4 weeks.

“She was incredible with her radiotherapy after that, she sang everyday while she laid on the bed,” recalls Carly.

“She raced the nurses down Clatterbridge Cancer Hospital’s corridors after each session.

“She rang the bell at the end too which was so nice!

“She was so excited for that part. She is honestly braver than anyone I know.

“She puts most adults to shame with how strong she really is. Nothing phases our little princess.”

An MRI scan in December 2020 showed swelling on her brain had reduced and the tumour was holding stable.

“Acacia continues to do really well on a daily basis, due to Covid, she stays at home and has an online class with her tutor every day,” added Carly.

“She is back to running around, riding her bike and apart from her eye looking inwards, you wouldn’t know our little girl has this horrible monster inside of her.

“She continues to amaze us daily with how strong she is.

“Even though in the back of our heads, we know we may not have all the time in the world, we’re still smiling, still having as much family time as possible.

“And we are thankful for her every single day, and the sooner the restrictions are lifted we can begin making memories everywhere with our family and close friends!”

You can still donate at the family’s Gofund page for Acacia, here

(Images courtesy of family and Wistaston Academy)

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