Patient Story – Stanley

He started complaining of headaches

Eight-year-old Stanley lives with his Mum, Dad and older sister. He loves his X-Box, Lego, wrestling and his best friend. Stanley was a healthy and outgoing boy until September 2021, when he began complaining of headaches. A scan at his local hospital in December 2021 revealed a brain tumour. He was just six years old.

Being blue-lighted

He was immediately blue-lighted to hospital with a build-up of fluid on the brain and he was described as critical. The fluid was drained on 9 December and the next day he underwent 14-hour surgery to remove what was safe from the tumour. He then went into high dependency unit for around four days. Five days later, he was diagnosed with Posterior Fossa Group A (PFA) Ependymoma WHO grade three – a cancerous brain tumour. He re-learnt to walk, talk, sit, stand and he couldn’t swallow so he had a feeding tube inserted which we were trained to use for when he was discharged home on Christmas Eve 2021.

He may never ring the bell

In January, he started a course of chemotherapy which was three rounds in total. In April, Stanley began seven weeks of proton beam therapy, and we were very lucky as they took him in at a newly established centre and he was in one of the first groups of children to be treated there. At first, he seemed to be responding well, but in June it was found that the cancer had spread to his spine. His treatment plan moved from ‘curative’ to ‘palliative aiming for remission’. Heart-breaking news for myself and Stanley’s Dad. We were hopeful he would ring the end of treatment bell in October 2022, now, he may never ring it. We asked what his prognosis was, and the consultant said, ‘we are very worried, I may never cure Stanley’. We asked if he would reach adulthood and the answer was ‘well that would be ten years for him to reach 18 so I hope so’. To us adulthood is becoming a man, fathering children, having a life. Not turning 18.

A secondary tumour

It’s hard to have these appointments when they say, ‘give him more time’ when I want to hear ‘cure’ or ‘remission’. The residual tumour is not safe to remove and is laying there ready to strike again, any time it wants. In July 2022, further scans revealed another secondary tumour in his brain. After seven more cycles of chemotherapy lasting till October 2022, Stanley’s spinal tumour had increased by 25% however the new secondary tumour in his brain was stable and the original residual tumour was also stable.

Starting radiotherapy

In January 2023, Stanley had his spinal surgery but they deemed it too risky to re-operate on his brain again at this time, however if radiotherapy does not help, they may consider surgery. We are waiting for radiotherapy to start at the end of March 2023 and all we can do is hope. Radiotherapy brings its own risks to our son. He will be at risk of a stroke, damage to his eyes, damage to his hearing in his only ear that works, damage to the brain stem, possibility of short-term memory loss in the future and struggling with processing information which will affect his education. There are all these risks, but he needs it to ‘give him the best possible chance’.

Kirsty, Stanley’s mum, March 2023

Update: September 2023 

Sadly, Stanley has relapsed again and they say they can’t cure him now. Only palliative options are available. He is well in himself. 

He has another scan due at the end of October and he will have another brain surgery to remove the tumour. Then we have to choose what sort of chemotherapy plan we want for him as there are three different types. One of them is a trial at The Royal Marsden but again this isn’t a cure, this is just to buy him more time. 

Kirsty, Stanley’s Mum

Update: March 2024

Since September he had review MRIs in October 2023 and we were told that the new tumour on his brain had grown (more than doubled) and he would need surgery now. The doctors said Stanley could wait until January. Two weeks later we were told they can’t wait and that he needed it immediately. We decided we would choose the surgery followed by intra ventricular chemotherapy and oral chemotherapy. Stanley had an fitted  which is a device to deliver chemotherapy which has a cannula type straw into the ventricle, a dome that sits above the skull under the scalp, similar to a port but in his brain. His consultant wanted to try a chemotherapy that is rarely used and has only been used a few times in the past. At home, he will have the oral chemotherapy every day for 21 days then have a seven day break and the cycle will repeat. The intra ventricular chemotherapy would be given two times a week for six weeks, then down to once a week for six weeks, every two weeks for four months then once a month. Both are given for a course of 12 months! He will be monitored every three months by MRI and should the treatment need to increase we would then discuss.

He had his surgery on 6 December 2023 and made such a speedy recovery he surprised all medical staff! He got home and recovered well before Christmas. His new chemotherapy treatments started 6 January 2024. It’s going ok but Stanley is so sensitive to chemotherapy so the chemotherapy at home has had to be stopped before a cycle finishes as his bloods drop so low. Each time he recovers, the dose is slightly reduced and we start again. So far we have had two failed cycles and are preparing to start cycle three at 60% of the prescribed dose. Friday 1 March was his 9th birthday and he spent the morning in hospital for his chemotherapy. We were then able to take him home to enjoy the rest of his day and weekend plans.

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