Joey's Story

At 3 months old, Joey was diagnosed with a large brain tumour- discovered after he had had some seizures at home.

He was taken to St George’s Hospital straight away, where he had his first surgery and they were able to remove 95% of his tumour. Joey recovered amazingly and came out of PICU the very next day. We were told the tumour was low grade and unlikely to grow back.

At Joey’s follow up scan just over 3 months later, we had the awful news that the tumour had returned and this time, grown deeper in to his brain. A small tumour on his spine was also found. Joey had his second surgery that week, where they removed 60% of the tumour. He was then due to start a high grade tumour chemotherapy protocol in two weeks time at Great Ormond Street. Although the tumour looked to be low grade, it was growing at a fast rate.

2 weeks later, After Joey’s first round of chemo he became very unwell. We found out he had meningitis and an MRI found the tumour had already returned and that he also had a large and dangerous aneurysm growing in his brain, likely damage from the second surgery. It was quickly organised for Joey to have a risky procedure to ‘coil’ the aneurysm. There was a high chance of a stroke but thankfully the procedure went well and the aneurysm would he to be closely monitored.

At the end of Joe’s first cycle of chemo, around 8 weeks later, we found out that blood flow had returned to Joey’s aneurysm. It would be very complicated to operate on it, however the surgeons felt this would give Joe the best chance of a future. However they would not know until theatre what they could or couldn’t achieve.

On the 15th May Joey had a 10.5 hour surgery where they managed to get three clips on the aneurysm which we hope will permanently treat it. It will still be closely monitored, along with his tumours, while he continues his chemotherapy treatment every other week.

He celebrated his first birthday 4 days later on the high dependency unit at Great Ormond Street.

Joey did suffer a small amount of brain damage from the aneurysm surgery, which meant he woke up unable to move his left side.

But since then, he has gained so much of his movement back. He still can’t move his left hand be we are hopeful this will come- he is a fighter.

One thing Joey had never lost throughout it all though, is his smile. He is such a sweet and happy boy. Joey has a big brother Benny who has also been through so much with all of the disruption, trips to hospital, planned and unplanned, despite it all he copes well. We are so grateful to be able to find time for a bit of a break between treatments and to give these boys a holiday; they so deserve it

Thank you BSF