Lily’s Journey

Supporting Theo and His Friends


Lily’s parents have kindly shared their story about the journey they’ve been through over the last couple of years. Lily’s diagnosis was an accidental find. When she was 4 years old, her left eye started to drift off occasionally in an ‘odd’ direction which after a few routine appointments, she was eventually diagnosed with a squint that they assured her parents could be corrected by surgery.

However one day, on the off-chance, one of the Doctor’s at their Swindon hospital advised she should have a CT scan as the squint was in an ‘abnormal direction’, assuming it was all just a precaution as Lily had no other symptoms of anything more sinister. Unfortunately the CT scan revealed an ‘abnormality’ which then required a proper MRI and then a biopsy. Lily was on watch and it was a year until it started growing. Shortly after the growth was confirmed, Lily’s parents decided that the best thing to do was to carry out an 18 month course of chemo. Such a hard thing to decide for any parent to make having to watch your own child go through such a process but hoping it’s for the best in the long run.

Lily’s parents are thankful that she hasn’t – and touch wood – hasn’t yet had any more symptoms from her tumour.  Her squint was corrected with minor surgery and Doctor’s now say the tumour had nothing at all to do with the squint as it is in a completely different part of the brain and not linked at all – pure fluke it was found!!

The 18 months hasn’t been easy but Lily is currently doing well and awaiting her first off treatment scan.


Lily 1-1 Lily 3 lily_2_720

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