Evie was just 11 years old when she died after a two and half year battle with cancer.
Evie’s initial symptom was a pain in her left knee. This pain escalated over a 3 week period and after a number of visits to the GP, we decided to take her to Princess Margaret Hospital. A large tumour was located in her left leg above her knee. She was diagnosed with a rare form of bone cancer, Osteosarcoma. We were of course, deeply shocked. It had never occurred to us she may have cancer. She was only 8 years old – how could she have cancer?
Evie was admitted within a few days for a biopsy. This proved conclusive and a course of chemotherapy was prescribed in an effort to shrink the tumour and prevent the spread of the disease. Life changed unrecognisably. The reality of cancer sunk in almost immediately as Evie had to stay in hospital for several weeks at a time, away from home and everything that was familiar. We were immersed into a world of machines, medicines and horrendous procedures. It was the stuff of nightmares and we had to help our little girl endure it.
Alison stopped working immediately as we knew we would spend many months in hospital and fortunately, these days, parents are permitted to stay in hospital with their kids. All of our usual family routines disappeared replaced instead by operations, hospital rounds, frightening procedures and endless days of waiting for results. We were told to expect long hospital stays, as the treatment for this particular cancer is very intensive. Evie was also told to expect to lose her hair and to have a big change to family routines and life in general. A night spent in our home became a rarity and our mornings were punctuated by the noise of traffic on busy Thomas Street, the road that runs alongside the hospital. It became a terrible routine to have to explain to Evie that we couldn’t go home and we had to stay in the hospital, knowing that most people were playing sport, having parties, going to school and spending time at home just doing ordinary, normal things.
After two months of chemotherapy it was clear the tumour in Evie’s leg wasn’t responding and had grown rather than shrunk. Evie was quickly readmitted to hospital and her left leg was amputated from her hip – a hip disarticulation (www.amputee-coalition.org). What followed was a heart-wrenching 18 months of chemotherapy treatment, hospital admissions and over 28 operations to deal with complications caused by infections. Evie also underwent physical therapy to learn to balance on one leg, to walk and eventually ‘run’ on crutches.
Sadly, Evie relapsed very quickly after the chemotherapy was completed, with tumours found on her lungs. She endured four further operations to remove the tumours and a short course of more intensive chemotherapy, causing her to become very ill. The treatment was stopped when a tumour was found in her chest cavity making it impossible to operate.
Throughout this journey Evie was amazing. She displayed a remarkable ability to face the challenges head on whether these were trying to keep up with the other kids on the rare occasions she attended school, dealing with strangers who often stared or asked lots of questions about her lack of hair and leg, learning to walk and eventually swim again, being unable to go to school or to her friends birthday parties, missing out on concerts and family occasions due to being in hospital, and just enjoying everyday things like being able to eat, rest, play and just sleeping in her own bed, at home. She died at home on 15th September 2010.
It is almost impossible for a parent to describe the impact of losing your child to cancer particularly when your child has suffered in the way Evie did. Evie has become an inspiration to many people who witnessed her fight against this disease. Her resilience, sense of humour and positive attitude inspire us to continue to raise awareness of the effects of cancer on children and their families.