Once upon a time, along time ago, in fact almost 30 years ago, Emily was born. She was the most beautiful baby the nursing staff at the hospital had ever seen , or so they told me. Needless to say in her fathers (Matt) and my eyes she was absolutely gorgeous, a perfect little sister for her perfect big brother, Jon.
Within 12 months or so we noticed that Emily had a milky white spot on her right pupil. After numerous visits to the local doctor with no satisfactory answer, her dad was talking to his optometrist about this spot. The optometrist knew immediately what was the problem and suggested we make an appointment with an ophthalmologist as soon as possible.
At that time Emily’s grandfather’s wife was matron of Sydney Eye Hospital and an urgent appointment was made for us to see the wonderful Professor Billson who headed up the team at the hospital. Within a couple of days we heard the worst news any parent could imagine. Our dear little girl had a tumour in her eye, a rare childhood cancer called Retinoblastoma.
After this frightening diagnosis followed a week’s stay in the Camperdown Children’s Hospital where Emily endured numerous tests, scans and x-rays. Many of these were invasive and very traumatic for an 18 month old toddler. Day after day Em endured having needles attached to her tiny little arm and secured by slabs of foam covered board so she could not bend her arm or remove the cannula, radio active dye injected into her blood stream, sedation so the doctors could conduct invasive tests, all to determine if the cancer was to be found anywhere else in her precious body.
Thankfully the outcome of these explorations revealed that the cancer was isolated to her eye only! At the beginning of this journey we could not have imagined getting any worse news than we had received, but by the end of that week in the Children’s Hospital we realised how lucky our family really was. We met many other families whose child had retinoblastoma in both eyes with blindness being the only positive outcome. (Not to mention the numerous other families who’s children were critically ill and with no hope of recovery).
We were to learn that Em’s tumour was growing outwards, not inwards towards her brain, which would have lead to far worse health outcomes for her, and possibly even death.
Throughout this challenging time for Emily and her Dad and I, Jonathan, who was only just 3 needed to be left at home in our town with a family friend so that he was not exposed to the constant assault on his little sisters body. Needless to say he suffered from the loss of the time and attention and the security of knowing that Emily and he were both safe. Jon and Em were inseparable friends when they were young and while away from Jon, Em would constantly ask for her Jonny. I think she found being away from him just as difficult as her time at the hospital.
After the rounds of tests we were allowed to go home for a week before Em was to be admitted to the Children’s Hospital for the operation to remove her eye.
Prof Billson had explained the procedure to us; the eye would be removed, the muscles attached to an acrylic ball, and then she would have 6 weeks for that to heal before being fitted with a prosthetic eye. Sounds simple really, doesn’t it? We were assured that this procedure would cause no pain to our little Emily and we were not to worry! As if!
The operation went smoothly and the Prof was very happy with the outcome. Em was returned to the ward with a bandage around her head, swooping down to cover her eye and just about half her face. She had always been a hardy little girl and at this time she amazed us and the nursing staffs with her resilience and determination to just get on with life. Within a day of the operation she was riding a trike around the ward and out on the verandah! There was no stopping this little girl.
Within a few days we were allowed to return home and resume normal life again. Matt and I had been shown how to care for the empty socket where Emily’s sparkling blue eye had been no more than a week ago. This routine was most unpleasant for Emily and caused a significant amount of stress for her and the rest of the family. But nothing would hold Em back from enjoying her life and so as a family we picked ourselves up and went about living life. With a patch tightly adhered to her face, Em, Jon, Matt and I walked to the beach, played in the sand and waves, climbed monkey bars, went for holidays to other beautiful beach locations, trying to re-establish some sort of normality in our lives.
It was while on our planned Christmas holiday to Tuross Heads on the South Coast of NSW in 1984 that we noticed that something didn’t look right with Emily’s socket. It looked like the implant was falling out. This couldn’t be happening! We rang Prof Billson and described what we saw to him. “You better bring her in “ he said. So we packed the car and the children and drove the 4 hours back to Sydney.
Here began 6 months of operation after operation to try and find an implant, which Em’s little body would not reject. Each time Emily was wheeled into the operating theatre all we could do was pray that this would be the last time she would have to endure this torture. Each operation was a new attempt to save Emmie’s muscles so that she would have the best possible movement when her prosthetic eye was fitted. It took a week or two after each operation to discover that it had failed. Finally Prof Billson spoke to us about a procedure he was developing which used fat from the patients own body implanted into the eye socket. He convinced us that this would provide the outcome he wanted for Em.
She became his guinea pig.
This time he prepared us for what was to be a very painful operation requiring a skin graft on Em’s chubby little bottom! He warned us that she would be in a great deal of pain and the recovery would be most unpleasant. Not only was Emily to endure another long operation and more discomfort in her eye but also a very sore and tender bottom.
Emily has had to endure more than most children should have to in any childhood, before she was 2 years old. During all this time Emily continued to be a busy little girl who loved playing with her bother, going to the beach, and generally getting into typical toddler mischief. Her Dad and I drew so much strength from her during this time as she would smile and laugh as if life had always been like this. What an amazing little girl she was.
Just before her 2nd birthday we took Emily to the artificial eye maker in Sydney, Taylor and Treffry, where she entered the next stage of this horrible journey. Having an artificial eye made is a very slow and imprecise process. A mould must be made of the socket, then created into an acrylic shell, a hand painted eye must be produced to perfectly match the existing eye, showing blood vessels, flecks of gold and yellow, blue and green added to make it look life like. Then, after all this is done, about a week later, the fitting occurs. This is incredibly painful as you can imagine and the eye rarely fits perfectly the first time. So in and out it goes while the oculist fusses and fiddles with little bits of wax to try and make the eye sit and look better.
At last, the patch came off, an eye was fitted and for the first time in over 6 months our dear little girl had 2 beautiful little blue eyes looking at us.
This is the beginning of Emily’s journey. You have met her at The Beetle Shack and know her as she is now. Until this time you have not know this part of her journey, but it's always been there forming part of the patchwork quilt that is her life. And it is up to Emily to decide if these early patches in her quilt add beauty or not.
However she views it, I think she is a beautiful, strong, determined woman and thank God for her every day.