Kyle and Patricia’s story – coping with a 430 mile round-trip to treatment after being diagnosed with a rare eye cancer

Kyle, 15, was diagnosed with a right eye ciliary melanoma in July 2019. Because of the rareness of the cancer, Kyle and his mum Patricia had to travel to Liverpool from Taunton for treatment – a 430 mile round-trip. Here, Patricia explains how the long journey to treatment has impacted on the family’s finances.

“Kyle has worn glasses since the age of five. This year [2019] Kyle started complaining that his vision in the right eye was really blurred, to the point he couldn’t see anything clearly.

“In July we went to the optician to have a check-up, as we thought it was time for some new glasses. The optician said he spotted something in Kyle’s eye, a shadow or it could just be blood as maybe a vessel had burst, he asked if there had been any trauma or if Kyle was a diabetic as this is usually associated with that. I said no to both and he wasn’t happy to leave it and made a personal 24 hour referral for us at our local hospital.

“The next day we were at the hospital where he went through quite a lot of vision tests and an ultrasound scan on his eye. At the end of consultation we were told they believe he had a tumour in his eye which is causing the bleed behind the eye, however they couldn’t say if it was cancer or not, so we were being referred to Liverpool University Hospital as there are only three places in the UK that can deal with this and Liverpool is the closest to us.”

In Liverpool, the doctors confirmed that Kyle had right eye ciliary melanoma, a rare tumour that affects only 500 people in the UK each year – and with only one of those 500 being a child.

Since diagnosis, Kyle has had two major operations in Liverpool to try and save his eye. During treatment, the family had to travel four and a half hours from Taunton to the hospital in Liverpool and struggled with the financial pressure of travelling so far.

“We had to hire a car to make each journey for the surgery and treatment because my car is older and we wouldn’t have been able to make the journeys to Liverpool. We had to arrange for people to look after our other kids too.

“It cost us around £410 for the week in Liverpool purely for the car, putting fuel in it, extra childcare, and nursery for the little one and extra bits for Kyle to be in hospital. Things like a dressing gown that you don’t think about. The list is so stressful to be honest. Not only the trip there and travel, but the parking at the hospital too.”

Kyle is now due to have another procedure in February, which the family hopes will give him some sight back.

Patricia says, “Kyle has been amazing, taking everything in his stride as a typical teenage lad. I think for me as a parent, it’s having no control over this, is the hardest thing.”

While Kyle is back in school and preparing for GCSEs, the family is determined to help others struggling with the costs of traveling to hospital. In September, Patricia took on a challenge to cover 430 miles to raise more than £1000 for CLIC Sargent and St Paul’s Eye Unit at Liverpool University Hospital.

Patricia is backing CLIC Sargent’s call for a Young Cancer Patient Travel Fund. Sign your support to ask all party leaders to commit to the fund if they become the next Prime Minister.