The long journey to recovery

Trinity seemed to be a healthy seven-year-old girl, when all of a sudden she developed a sensitivity to light and started to experience severe headaches. 

A cause for concern

When Trinity started to complain about pain around her eyes, her mum Nadya took her to the opticians for an eye test, but the optician failed to detect anything untoward. While Trinity’s headaches continued, her parents also started noticing restricted movement in her left hand during any periods of physical exertion, usually while she played around with her four-year-old sister, Tessa.

Her parents became increasingly concerned and took her to see the family GP. Movement tests confirmed Trinity was having difficulty coordinating her arms and it became apparent that she was developing a weakness down one side of her body.

MRI scan reveals bad news

The family’s GP referred Trinity to the local hospital and MRI scans soon revealed Trinity had a brain tumour. The devastating news came as a huge shock to Trinity’s mum Nadya and dad Johnny, as Nadya explains: “Trinity had seemed absolutely fine just a few weeks earlier so it was totally overwhelming to find out the situation was so serious.”

Trinity was immediately referred to Great Ormond Street Hospital (GOSH) for specialist treatment. The family met consultant paediatric neurosurgeon Mr Owase Jeelani, who explained that Trinity had three cysts and complex surgery would be required to remove as much of them as possible. It was an anxious time for Trinity’s whole family, as mum Nadya says: “Surgery seemed like such a huge thing to put Trinity through, but we were so worried about what might happen if we didn’t act straight away.”

Trinity had a six-hour long operation and Mr Jeelani removed as much of the cysts as possible. The surgery was a success and Trinity spent three months recovering on Koala ward as she gradually recuperated.

Stateside proton beam radiotherapy

The family then faced a difficult decision about what follow-up treatment Trinity should have. Due to the nature and complexity of the tumour, Trinity could either receive chemotherapy in the UK, or the NHS could refer her for a course of proton beam radiotherapy in the US. This type of radiotherapy uses a precision high-energy beam of particles to destroy cancer cells.

After carefully weighing up their options, the family decided to proceed with a ten-week course of proton beam radiotherapy in the US.

Life after Great Ormond Street Hospital 

After the course of treatment had been completed, Trinity returned to GOSH for a follow-up appointment with Mr Jeelani, who was delighted to see she was making excellent progress.

Trinity has regular check-ups but is doing well. She loves school and is delighted to finally be back in class after missing more than a term while she was receiving treatment. She enjoys reading, swimming, playing the keyboard, making up songs and loves the film Frozen.

Medical Conditions