A Story of Courage
Lewis was born in July 1998 and, for a few months, he was like most other babies - happy and healthy. But that Christmas, before he'd even reached his first birthday, his parents noticed that his right eye was starting to close. The health visitor thought it was nothing to worry about, most likely just a squint, and decided to refer him to an ophthalmologist. It was meant to be straightforward.
The ophthalmologist was not convinced that this was a normal squint, and at just 9 months old, Lewis was booked in for an MRI scan. By the time the appointment came around, he was 14 months old and his right eye was closing further.
The MRI scan confirmed the doctor's suspicions that Lewis was not suffering from an ordinary squint, and so further tests were arranged. These, however, did not reveal anything, and so Lewis was referred to the Royal Preston Hospital under a
paediatric neurologist.
By this time Lewis' eye was almost completely closed, and this was causing increasing concern among the medical profession as they could find no reason for it. Lewis became known as the "mystery man", as nobody had any idea what was going on.
Blood tests and examinations became an everyday occurrence for the little boy, who was understandably frightened both by his unyielding eye, and by the constant attention of unfamiliar doctors.
The tests continued for months. These included two muscle contraction tests designed to see if Lewis' eye was closing due to a defective muscle; they involved slowing Lewis' heart to a dangerous level, so a specialist had to be on hand with adrenaline injections.
A bone marrow sample was taken, and poor Lewis had to endure two agonising lumbar punctures. And between these major procedures, scans under general anaesthetic were taking place on a regular basis.
To try and stimulate the muscles in his eye, Lewis was put on a course of steroids which meant him staying in hospital in Preston. While he was there, doctors noticed a slight abnormality with his blood tests - suddenly, leukaemia had to be ruled out. Thankfully, this test came back negative, but the steroids had not worked and so Lewis had to be weaned off them.
Another scan necessitated a trip to Alderhey Hospital in Liverpool, and while there, someone spotted a very small abnormality. There was a lesion on Lewis' third cranial nerve - this was the reason why his eye was closed. After a few meetings with another eye specialist, Lewis was booked in for more scans, which indicated that the lesion had grown.
Arriving for one such scan, Lewis' family discovered to their horror that their young and vulnerable son had been booked into the brain tumour clinic for surgery. The operation revealed that the tumour was woven into and around the carotid artery - the main artery leading into the brain. Disturbing the tumour could cause a lethal stroke, so only the smallest amount could be removed for biopsy.
The results named the tumour as a benign meningioma; though non-cancerous, it was growing, and so Lewis became a patient in the Children's Oncology Unit. The tumour had already caused irreversible damage to the third cranial nerve. Covering every eventuality, the doctors carried out a test for neurofibromatosis; meanwhile, with support from Macmillan nurse Phred and play therapist Pip, Lewis was fitted for a radiotherapy mask.
The test results confirmed that Lewis had neurofibromatosis type 2: radiotherapy
could not commence and, suddenly, corrective eye surgery was out of the
question. Now eight years old, Lewis has to undergo regular scans indefinitely
to monitor the tumour and also check for new growths. The worry for the
doctors is that the tumour, if left, will continue to grow, and this
could have potentially fatal results. Lewis also has to have regular eye
tests to monitor the gradual deterioration of his vision. The prognosis
is very uncertain, but hearing and vision loss is to be expected during
his teenage years.
