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ETHAN'S JOURNEY

In January 2012, Ethan was diagnosed with ependymoma – a type of brain cancer.  When the tumour was first identified, it was so large that it blocked the flow of cerebrospinal fluid in Ethan’s head and spine, causing him agonising pain.  A week after initial surgery to insert a drain to relieve the pressure, Ethan endured a marathon nine-hour tumour resection performed by Dr Sharon Lee and her team at Princess Margaret Hospital.  Amazingly, Dr Lee was able to remove approximately 98% of the tumour.  Ethan survived the surgery and was admitted to the Intensive Care Unit at Princess Margaret Hospital.

Unfortunately, the size and location of Ethan's tumour and the unavoidable effects of its removal meant that he would have a long road to recovery.  Initially, he was unable to even hold his head up or swallow his own saliva.  The pain from the surgery was so intense that he needed extra morphine just to be turned over in his hospital bed.  Problems with hydrocephalus – fluid in the brain – resulted in him spending many weeks lying down, attached to a drain and unable to move.  

But over time, Ethan's determination took over.  A programmable shunt was inserted into his head to manage the hydrocephalus and allow the drain to be removed.  He began to sit up and try to move around.  He was able to swallow better and showed signs of wanting to eat and drink again.

As Ethan continued to improve he commenced chemotherapy in an effort to shrink the remaining brain tumour.  After various complications, and over 10 weeks in hospital, Ethan made it home for the first time in March 2012.  He was delighted to be in familiar surroundings.  His recovery continued brilliantly – he began to crawl around and tried to climb the furniture at every opportunity!  The chemotherapy was very successful, with no visible tumour in his post-chemotherapy scan.

The next step for Ethan was radiation therapy, to try and eradicate any remaining cancerous cells and reduce the risk of a recurrence.  Radiation therapy to the brain of a two year old child often has devastating long term side effects, however without this treatment Ethan’s tumour was more likely to return.  So the difficult decision was made to transfer Ethan from Princess Margaret Hospital to the Peter MacCallum Cancer Centre in Melbourne for intensity modulated radiation therapy (IMRT), a treatment unfortunately not then available in Perth.  Over the course of two months Ethan received 33 radiation treatments, all of which were performed under general anaesthetic.  The radiation treatment, although very gruelling on Ethan, went well.  Thankfully, there was still no sign of tumour in Ethan’s post-radiation scan.

Ethan is now on the road to recovery.  He has periodic scans to keep watch for any signs of the tumour returning.  His health is reviewed and monitored by various teams at Princess Margaret Hospital, including oncology, neurology, audiology and endocrinology.  He is receiving regular therapies including physiotherapy, occupational therapy, speech therapy and music therapy.  After receiving all of his nutrition through a tube in his nose for almost two years, Ethan has now learnt to eat some foods again, and is beginning to show an interest in drinking.  Due to the damage to his facial nerves and swallowing mechanism from the surgery, this is an ongoing process.

Ethan’s challenges are compounded by an autism spectrum disorder diagnosis, which is unrelated to his brain cancer.  He is completely non-verbal, and communicates with the aid of an electronic communication device and simple sign language.

Ethan enjoys attending at his local school, in an Education Support class.  His lifelong friend and companion, Boris the Bear, stays with him wherever he goes.

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