At just four months old, Arwen was discovered to have a cancerous tumour in her left eye which ultimately led to her mother Eilise having to take the heartbreaking decision for the eye to be removed.
Eilise (33), a trained English teacher who once ran a tree surgery business, said: “We noticed a glow in Arwen’s left eye, two or three times during a two-week period, and I took her to a doctor at Bassingham Surgery near Lincoln because I wanted to know what it was.
“The doctor recognised that it might be a tumour and she referred us to an eye specialist at Queen’s Medical Centre, Nottingham.
“Arwen was then referred to a treatment centre at Birmingham Children’s Hospital where, 19 days after we first noticed the glow in her eye, she had the operation.”
Eilise is now aware of her daughter’s condition– retinoblastoma (Rb) or cancer of the retina – caused by a faulty gene which can either be hereditary or develop randomly as a child grows in his or her mother’s womb.
Thankfully, Arwen’s diagnosis was made early enough for treatment to be done before the cancer could spread outside the eyeball as happens in some developing countries where lack of awareness of eye cancer, late diagnosis and poor treatment can result in a child’s death.
Eilise said: “It was very difficult at the time Arwen was diagnosed with Rb and the whole operation happened very quickly, so there wasn’t time to think about it.
“The rest of my family was worried because they really didn’t know what to expect, but we’re getting used to it now.
“We all see how happy Arwen is and she has developed quite normally, if not slightly advanced in some areas. But it was after the operation that the full implications hit home and Arwen will have to leave with a false (prosthetic) eye for the rest of her life.
“In the future, Arwen could turn round and say ‘I wish you’d have put me through chemotherapy’.
“But I think we made the right decision.”
The treatment of a patient with Rb largely depends on the size of the tumour, with a small one treated either by thermotherapy (applying heat to the tumour), freezing the tumour or laser treatment to the eye.
But larger tumours are treated either by radioactive plaque where a disc is attached to the cancerous cells and left in place for a few days to destroy the tumour, chemotherapy where anti-cancer drugs may be injected directly into the blood vessel supplying the eye or removal of the eye completely.
Eilise added: “The treatment at Birmingham Children’s Hospital has been fantastic, the consultant is wonderful and the specialist nurses there explain everything to you.
“They are very organised, they let you know what’s happening and they have everything you would need for a child there, all in a warm environment.
“Arwen has her check-up every eight weeks, but the hospital pays for a hotel room so that we can get there on time and not have the worry of driving from home ( Harmston, near Sleaford) to Birmingham just to get my daughter to her appointment.
“It’s one of the reason why we’ve been so grateful to the NHS, but also the Childhood Eye Cancer Trust (CHECT) after we met a woman at the hospital during Arwen’s treatement who works for the trust.
“She goes into all the wards where children are being treated for Rb and, even though she’s not a doctor, she knows what you are going through and helps in answering your questions.”
Both the immediate and life-long challenges facing children like Arwen were highlighted during World Retinoblastoma Awareness Week last month which encouraged people to use their mobile phones and take a flash photo of their child in order to detect Rb early.
“My role during the week was to tell Arwen’s story to as many people as possible and hopefully, in the future I’ll be able to get involved with the charity more.
“A lot of people have never heard of Rb and so you become an expert on the condition quite quickly because it’s important to be informed.”
• Retionoblastoma (Rb), or cancer of the retina, affects just one in every 20,000 children or about 40 to 50 youngsters, mainly under the aged of five, in the UK.
For about two-thirds of children, a cancerous tumour is detected in only one eye (unilateral Rb) but for the other third, tumours may be found in both eyes (bilateral RB).
The condition is usually diagnosed either when a white eye, white pupil or white reflection can be seen in a photograph where a flash is used, commonly described by parents as looking like “a cat’s eye caught on light” or by an absence of “red eye” where one may look black or hollow.
RB is caused when the cells of the retina grow rapidly and out of control, but more than 98 per cent of children treated for it in the UK survive and the majority of patients have no reoccurrence of the condition after it is treated.
There are two specialist treatment centres in the UK at Birmingham Children’s Hospital and the Royal London Hospital.