In January 2012 Ethan was diagnosed with ependymoma; a type of brain cancer. When the brain tumour was first located, it was so large that it blocked the flow of cerebrospinal fluid in Ethan’s head and spine. The resulting build-up in pressure was slowly squeezing his brain against the inside of his skull, causing him agonising pain and developmental delay. A week after initial surgery to insert a drain to relieve the pressure, Ethan endured a marathon 9 hour surgery 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 in 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 was placed on an international clinical trial for newly-diagnosed childhood ependymoma sufferers. 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!
Sadly, he has been left with a palsy on the left side of his face, still receives much of his nutrition through a nasogastric tube due to ongoing problems with swallowing and an oral aversion, and has had to learn to sit, crawl and walk all over again.
Ethan completed seven weeks of radiation therapy (to try and eradicate any remaining cancerous cells and reduce the risk of a recurrence) at the Peter MacCallum Cancer Centre in Melbourne, and is now recovering at home. Unfortunately, ependymoma is a very aggressive type of cancer, which often recurs, so the most important thing for us and Ethan is to make the most of every day we have together.