SARAH'S RETINOBLASTOMA HOMEPAGE

Retinoblastoma is a malignant tumour or cancer which develops in the cells of the retina, the thin nerve tissue that lines the back of the eye and senses light. Although RB may occur at any age, it most often occurs in children before they reach the age of 5. Retinoblastoma happens to approximately 1 in 20,000 children. RB is either unilateral (one eye affected) or bi-lateral (both eyes affected), but can occasionally be tri-lateral (intracranial).

Sarah's Story....

On the 6th August , 98 we took Sarah to our local Optometrist because we had noticed a whitish/green looking pool in her left eye. We later found out that this was leucocoria.

In this photo you can see the white spot (leucocoria) in Sarah's left eye .

This was the start of basically a never ending story. He thought it could have been congenital cataracts so he sent us to a specialist in our Area. We went to see him on the 26th August 98 . This specialist thought it may be Retinoblastoma and although he had never seen it before, rushed us in to see the Paediatric Opthamologist within 2 days . On the 28th August we went to see this Opthamologist, and he recommended Sarah to have a Cat Scan on 31st August (which is usually a 4 week waiting list). It was a contrast cat scan which would tell us whether or not there was calcium involved. Sure enough Tuesday morning (Fathers Day at Pre School) we were telephoned with the results. A tumour, so big, enucleation was basically the only option. He booked us in to see Australia's Best Ocular Tumour Specialist in 2 days time (usually another 4 week wait). The specialist we saw on the 3rd September told us that it was a huge tumour , approxomately 16 mm thick and that the only safe way to treat it was to enucleate the eye . On the 8th September Sarah had her left eye enucleated . What a hard thing to have to put your child through !!! . All went well with the operation (thank goodness) and Sarah started to recover extremely well , in fact we were very surprised at just how well Sarah recovered . Within 3 days after the operation she was running around as normal , the only telling factor was the patch she was wearing on her eye and the fact that we had to clean the eye and put drops or ointment in 4 times a day . During the operation they fit a conformer in the socket to keep the shape of the eyelids , until the prosthetic eye is fitted , this is just a clear plastic cover .

This is a picture of Sarah with the conformer visible in the left eye.

On the 8th October we went back to see the specialist who performed the operation , he informed us that the eye was looking great & we could make an appointment to see the Ocularist (eye maker). On the 28th October Sarah went to the Eye maker and we made an appointment to have a mould taken under anaesthetic at The New Childrens Hopsital, Westmead on the 25th November.

Whilst under anaesthetic Sarah had her good eye checked, there were no signs of tumours. On the 16th December we had the greatest Christmas present imaginable, Sarahs New Eye. As you can see in the photo it is very good. A few adjustments are needed, these will be done in February.

In this photo Sarah is in the swimming pool with her new eye.Pretty good HUH!

On the 11th December our son Jake had his eyes examined and all was clear. Both Myself and Sam had our eyes checked on the 18th January 1999 and again all was clear.

Sarah's Photo Album

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