Aston's Ependymoma story

We thought it could be heatstroke

On the 11 August 2022, Aston was just a normal 8-year-old playing football with his Grassroots team. This all changed on the 12 August when he woke up and started to be sick and complain of headaches and was very lethargic. On the fifth time of going to the toilet to be sick, Aston started to have a seizure which lasted around 20 seconds. After that he collapsed to the ground and wasn’t able to move his legs. At the time we thought this was extreme heatstroke as the day before had been one of the hottest days of the year. On the sixth time of feeling like he was going to be sick, he couldn’t even move his legs to go to the toilet and his dad ended up carrying him to the toilet where he was sick and collapsed to the bathroom floor and had another seizure which lasted a lot longer and ended up in me calling an ambulance.

Rushing to hospital

He was rushed to hospital where he had a CT scan and we were told that he needed to be blue lighted over to the children’s hospital. Once we arrived, I was told that he had too much water on the brain and would need an operation now or I would lose him. He was promptly taken into theatre where he had an external drain (EVD) fitted to relive some of the pressure which then meant he was able to talk to us and see again as he had not been able to. He then promptly had a scan on the Saturday and that’s when we were told that he had a 4cm ependymoma which was blocking the cerebrospinal fluid channel in his brain meaning that the fluid was building up with nowhere to go – almost like running the taps in a sink and leaving the plug in.

The first surgery

He had his first surgery the next day to remove one third of the tumour and we were told that he would need a further two surgeries to remove most of it. The next one occurred six days later and the final one six days after that. Once these were removed his recovery was incredible, as we were told that sometimes these children have to go to intensive care to recover and may not wake up for three days afterwards, but not Aston. He was awake and talking after each one of his surgeries and wanted to get out of bed three days after each one. He also had to spend his ninth birthday in the hospital, but we were blessed with some very lovely nurses, who made a massive fuss of him and are massive Aston villa fans like him.

Additional treatment

We were then allowed to go home just over a month later and had to return three days later to have his Hickman line fitted in order to start chemotherapy. We commenced chemotherapy a few days later and planned to have three cycles, however we did not complete the final one due to the doctors noticing that this was not actually having any affect on Aston’s left over or seedling tumours, so we went right to radiotherapy over the Christmas period. Aston has completed 22 sessions of normal radiotherapy and eight sessions of booster radiotherapy.

Aston the football fan

We are fortunate enough to be able to say at this point in time, his remaining tumours have shrunk and are stable, and as a result of this Aston has been able to return to school two full days a week and get back out to playing the sport he loves, football. Aston is a goalkeeper for both his Saturday team and his Sunday team. He has also been very lucky to go and get to meet his hero Emi Martinez of Aston Villa along with the rest of the Aston Villa Team and is going to get to walk out as a mascot on the very first game of the season this year in August.

Raising Awareness

He will now have to have regular scans every three months to keep an eye on the remaining tumours, but he is going from strength to strength and his positive attitude all the way through this journey has been what has kept us as a family going and we continue to be so proud of him every day. He also isn’t afraid to ‘wear his scars’ with pride and tell people what he’s been through, even to the point that he was cheering other people on the chemotherapy ward up and was asked to speak to some of them by the nurses. Aston wants to raise awareness of his tumours and others and to let people know that it is ok to be sad sometimes but you just have to keep smiling and as Aston like to sing through it all ‘I’m Still standing’.

Jess, Aston’s Mum, July 2023

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