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Family looking forward to Christmas as daughter rings bell after treatment.

A family who had a festive season marred by their daughter’s brain tumour are hoping that this year will have the true Christmas spirit which they have been longing for.

In April 2019, when Amber was only five-years-old, and she suddenly started having headaches and regularly being sick in the mornings, mum Amanda never expected her daughter to soon be diagnosed with a medulloblastoma brain tumour.

The next two years of the family’s life were turned completely upside down as Amber had surgery and treatment, including proton beam therapy at a specialist centre in Germany. She also contracted post-operative meningitis after having the tumour removed and spent a week in Intensive Care to recover from it.

Then, with Amber back at home for Christmas 2019 yet in the middle of eight rounds of chemotherapy, the family were hoping to spend a happy festive season together. But, on Boxing Day, Amber’s temperature spiked and they had to rush to Norwich Hospital and spent the night there to ensure that she had nothing more serious than a virus, which could be especially risky whist having chemotherapy.

Amanda said: “It had been a horrific year but, with lots of our family over, we had a lovely time on Christmas Day. We treasured each other more than we ever had done before. We always tried to make every day as positive as we could. Even though Amber was in the middle of treatment, which had now made her completely bald, she enjoyed the day nonetheless.

Fortunately, Amber recovered quickly on Boxing Day and, in fact, she was pleased because she got an extra present!

With the Covid restrictions in place last year, the family couldn’t have the proper get together they so desperately wanted after a difficult 18 months. Instead, they saw the loved ones they could and are focusing their efforts on making this Christmas very special now that Amber’s treatment is over and she is in remission.

“Last year was tough – as it was for so many people – but we just tried to make the best of it. Now, Amber’s illness seems a long time ago as she is doing so well. This Christmas, we will be joining forces with both sets of grandparents as well as Amber’s uncle, auntie and nephew. This is something which we have never done before but we think it’s important to mark the occasion, celebrate Amber’s wellness and value the time we now have as one big family together.”

Amanda.

Back in April 2019, Amber’s symptoms of sickness and headaches were put down to childhood migraines. The family was told to keep a food diary over the next 10 days to see if anything Amber was eating could be triggering them. Following the GP’s advice, they also took Amber for an eye test – and the optician found swelling behind her optic nerves.

The worried family went to Norwich Hospital for tests, including a CT scan, before being sent on to Addenbrookes Hospital for an MRI scan. This was carried out on Father’s Day and two days before Amber’s brother, Max, would turn 11-years-old. It confirmed the awful news that Amber had a brain tumour.

Amanda said: “We were in a huge amount of shock when Amber was diagnosed. We knew absolutely nothing about brain tumours at that point. But we soon wanted to know exactly what the medical professionals were going to do to make our girl better again, which is when we first found out about The Brain Tumour Charity. Amber coped with it all amazingly well – she took everything in her stride very quickly – and we tried to understand the medical complexities of what was happening to her.

Amber was displaying the classic symptoms of a brain tumour which also include blurred vision, abnormal eye movements or head position and co-ordination difficulties. The Brain Tumour Charity aims to raise awareness of the signs and symptoms of brain tumours in children and young adults through its award-winning HeadSmart campaign. Since its launch, it has reduced diagnosis times from 13 weeks to 6.5 weeks for children.

Amber was admitted to Addenbrookes hospital and she had surgery which removed all of the tumour. However, her condition went sharply downhill as she also contracted post-operative meningitis and she spent nearly a week in Intensive Care. She then spent a few weeks on a ward as she was unable to open her eyes or walk unaided. She also lost a lot of weight as she was fed through a tube and she was regularly sick.

The family stayed at Acorn House, which is residential accommodation for families having treatment, so they could spend a lot of time together, including for Max’s birthday. Amber’s dad Jon and Amanda shared the bedside sleeping arrangements available to them and they both took time off work to be with their daughter.

After leaving Addenbrookes, Amber and her family then travelled to Essen in Germany to have proton beam therapy. This would help to eradicate any tumour cells which had remained after Amber’s surgery. The family all spent the first four weeks with her in Germany before Amanda and Max flew home ahead of him starting at high school. Amanda then returned a couple of days later after leaving Max in her mum’s care. The rest of the family visited as much as they could over the following weeks before they could all return back home together.

Amanda said: “We weren’t told about Amber contracting post-operative meningitis – I found out as I read it on her notes. For a long time, nobody seemed to know what was wrong with her and she was on a lot of antibiotics. It was a very scary time for us all.

Yet the treatment in Germany was phenomenal. The staff, clinic and accommodation were first class.

"In between the appointments and the treatment, we truly had a wonderful time in Germany. That sounds awful to say but it’s true. We met some wonderful families and spent days exploring and having lots of fun at a local park. There was also a toy shop just down the road from our accommodation which Amber very much enjoyed.

Much of Amber’s hair sadly fell out whilst having proton beam therapy and she then lost the rest of it when she had chemotherapy. She also had bouts of severe sickness, a sore mouth and stomach upsets, especially during the first of the eight rounds she had in total. This did make the family’s transition through the pandemic a little easier as they were already used to keeping Amber safe from germs since she was diagnosed. But it did mean that Jon and Max couldn’t be there to support Amber as much during the latter rounds of chemotherapy which Amanda helped her daughter through instead.

Amber was able to ring the celebratory bell which marked the end of her treatment in June. Now, with the worst of the ordeal behind them, the family is now looking forward to getting back to the familiar routine which has been lacking over the last couple of years.

Amber now has scans every six months to monitor her condition as well as regular hearing and eye tests. She has endocrine appointments following the removal and freezing of an ovary to preserve her fertility whilst having chemotherapy. She also has a daily injection of growth hormone as the proton beam therapy affected her pituitary gland.

With much of the trauma now behind her, Amber is back at school full-time having continued with as many of her classes as possible whilst she was having treatment as well as seeing friends or going to Brownies, football and swimming lessons.

Amanda said: “Amber has always made the best of a bad situation. She played, coloured and got up and about at the hospital even with the fluid and chemo attached to her. We often counted down the time until she could go home and one time, after a few days of having chemo at Addenbrookes, she came home and was doing headstands on the sofa. We were at home as much as we possibly could be – including for her 6th birthday and Christmas.

The family first found out about The Brain Tumour Charity following Amber’s diagnosis and her dad Jon requested a Brainy Bag from the organisation, which aims to educate young people about a diagnosis in a fun and engaging way. They have also used the Charity’s website as a vital source of information over the last two years.

Amanda added: “We have all learnt so much in the last couple of years about brain tumours and the truly devastating impact which they have on so many people’s lives – just like Amber. Early diagnosis is so important. We’re so grateful for the eye test which Amber had and this needs to become standard when children are routinely being sick or having regular headaches.

Yet, the treatment options are cruel. It was a horrible ordeal for our daughter. More money definitely needs to be spent on research to find kinder methods to rid people of all ages of this terrible disease which could have taken away our daughter.

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org