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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Indeg Glyn Roberts

Indeg from Rhoshirwaen in North Wales was just six when she was diagnosed with a grade 3 anaplastic ependymoma in November 2020. The shocking revelation came after months of vomiting, which doctors thought was caused by a virus. The schoolgirl had life-saving surgery at Alder Hey Hospital followed by months of proton beam therapy. Indeg also received chemotherapy as part of an international trial at Alder Hey in Liverpool. Now nine, Indeg leads a normal life and is monitored with regular scans. 

Here is Indeg's story, as told by her mum, Cerl...

We first noticed Indeg was poorly in summer 2020. She complained of a severe headache which turned out to be the only headache she had; despite later being diagnosed with a brain tumour. The pain went away and she had a sore throat and became physically sick. We saw a handful of different doctors on multiple occasions who all said Indeg likely had a virus and to give her Calpol and it should pass – but it didn’t. 

She went through spells of vomiting in the morning and still attending school the same day, not fazed. She always has been a determined little girl. 

At the time, I was made redundant from my role as a nurse and looked up Indeg’s symptoms on the internet and I saw a page about brain tumours. I mentioned this to my husband, Huw as I knew that deep down it was more than a virus. I spoke to my friends who tried to settle my anxiety but I couldn’t see past this worst-case scenario that everything Indeg was experiencing were the symptoms of a brain tumour. 

It was impossible to get a GP appointment at the time because of Covid-19. By November, Indeg became unsteady on her feet and she was still throwing up regularly. We made changes to her diet and cut out different foods to see if that’s what was making her sick. Nothing seemed to make a difference and she was gradually losing more and more weight. 

Eventually we got a face-to-face appointment with the GP. The doctor was shocked at Indeg’s weight loss and found her blood sugar and hydration levels to be extremely low. We were referred to a local hospital in Bangor for fluids and further investigation. 

Indeg was taken for a CT scan and as I was walking with the nurse along the corridor to the scanning room I said, I know exactly what you’re looking for. 

Within an hour of being scanned, I was told Indeg had a brain tumour. I was on my own, so I phoned Huw and was on my knees, sobbing in the room alone. My mother’s instinct was proved right. 

We were blue-lighted to Alder Hey Hospital in Liverpool and went straight to neurology where Indeg had emergency surgery to drain the build-up of fluid which was causing her symptoms. 

I saw from the second scan, this time an MRI, that the tumour was large and pressing on her brain stem. We were told if it was left any longer it would have been fatal, and she needed further surgery to remove the tumour. 

“Everything happened so quickly. From an appointment with our local GP, we were miles away from home and Indeg was being prepared for a second surgery.” 

We were still trying to process the news that Indeg’s tumour was likely to be cancer as the doctor was talking us through the operation and warning us that she could wake up with life-changing injuries. 

After a nine-hour operation, we were reunited with Indeg. There were tubes everywhere which was horrendous to see. We were told they had successfully removed the mass which was a grade 3 anaplastic ependymoma and she would need more treatment. 

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As she came round from surgery, Indeg was distressed and exhausted from being picked and poked at. Her first language is Welsh and as doctors approached her bedside she would shout at them ‘don’t come near me’ and she had written ‘no’ on her hand which she would hold at arm’s length. She was like this even with me. 

Indeg was six at the time of surgery. She had help with her swallowing and had to learn how to walk again after the operation as her mobility was impacted. With the support of a physiotherapist, within weeks, she went from a buggy chair to walking unaided. 

Further treatment saw a disruption to our usual family Christmas. On 21 December 2020, Indeg had her first round of proton beam therapy at the Christie Centre in Manchester. Although that was still miles away from our home in Wales, we had the option of going to Germany for the same treatment which I understand some families are forced to do. 

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“After a session on Christmas Eve, Indeg and I travelled home to Wales and we had Christmas lunch as a family before going back to Manchester where we stayed for two months.” 

Due to Indeg’s age, she needed to have anaesthetic to put her to sleep every time she had the treatment. She was fitted with a central line and used to administer this herself. It was always her way or no way. 

She had the expected side effects such as hair loss. However, she was always on the go and wanted to be active. As soon as she would wake from the anaesthetic, she would be out of the hospital bed and in the playroom. 

Our friends and family set up a GoFundMe page to help with living costs throughout Indeg’s treatment. As a family we have been through so much and I found it hard to return to my career as a nurse and I now work in a care home. 

Indeg is part of a research trial at Alder Hey called The International SIOP Ependymoma ll trial - it's aim is to improve the outcome of patients with ependymoma. Indeg was randomised to receive the chemotherapy after the oncologist had discussed the trial with us, and we had given consent. If we can throw everything at the cancer, it can hopefully stop it growing back and we know from her tumour type that a grade 3 has a high chance of recurrence. 

In August 2023, Indeg had a clear scan and she is monitored with scans every six months. 

When she gets poorly I feel paranoid that the tumour has grown back which is something we will live in constant fear of. 

Throughout her entire diagnosis, she has remained in school. Whether that has been home study when everything went online with the pandemic, or Indeg going in, to be with her classmates. I’d sometimes have to pick her up to take her to an appointment but otherwise she would learn and play happily. A person and a child

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In September, Indeg will go into Year 5 at Ysgol Crud Y Werin in Aberdaron. Her stubbornness to not let her diagnosis dictate her life has certainly helped our family through difficult times. 

I have signed the petition from Brain Tumour Research to drive more funding into the disease so that healthcare professionals at all levels have the knowledge and understanding to help with early detection. 

There are so many unanswered questions. How long was Indeg’s tumour growing? How did it originate? What causes it to grow again? 

If we are to understand this disease, we must fund the research to find the answers. 

Ceri Ann Roberts 
August 2023

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

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