This is Blake

Blake was a bright, beautiful boy who marvelled at rainbows and delighted in life. But on April 17th 2010, just one and a half months after his third birthday, he was diagnosed with an Atypical Anaplastic Ependymoma – brain cancer. Ependymomas account for only 2-3% of primary brain tumours in adults, yet are the third most common brain tumour in children, with more than 30% being diagnosed in children under 3 years of age. Brain cancer kills more children in Australia every year than any other cancer or disease.

That day, Blake had emergency surgery to insert an external ventricular drain to relieve the pressure inside his skull.

Three days later he underwent a partial resection – brain surgery to remove the tumour. Surgeons were unable to remove the whole tumour, and he was left with a 1.8cm mass in the Meckel’s cave of his brain.

Blake then had 2 rounds of chemotherapy, but rather than shrinking under the barrage of toxic drugs, the tumour continued to grow. The neurosurgeons attempted a second resection, but decided the risks were too great, and the tumour was deemed inoperable.

10 months after his diagnosis, following 33 rounds of focal radiation targeting the tumour and tumour bed (the normal tissues surrounding the original cancer), and another 4 rounds of chemotherapy, Blake was finally put into remission.

Jess met Blake while volunteering at the Ronald McDonald House, and now considers him her favourite person of all time – her light, inspiration and hope in the war against childhood cancer. Jess says:

  • Blake was electric. He was alive. He was on fire. He loved to perform for people. He loved to sing! And dance. And laugh. And joke. When Blake was there, it was like no one else was in the room. When he smiled, your heart was happy.

In February 2012, 4 days shy of the first anniversary of his remission, a routine MRI discovered that Blake’s cancer had returned – this time in his spine. Doctors were surprised that he wasn’t paralysed given the size and location of the new tumour. Now almost 5 years old, Blake endured another major surgery – a partial resection of the new tumour, leaving a 3mm mass behind. The surgery was followed by 30 sessions of total cranial spinal radiation to target the new tumour and its bed.

6 weeks after his treatment was completed, a follow-up MRI showed another tumour growing on his spine – this time on T12. The tumour was monitored with MRIs every 8 weeks, and 3 weeks before Christmas in 2012, it miraculously disappeared.

3 months later, the tumour on Blake’s T12 was back, and tripled in size.

So, in collaboration with his medical team, Blake’s parents decided that conventional treatment wasn’t working – it was time to try his first experimental treatment. But after 2 rounds of experimental drugs, an MRI showed the tumour was larger still.

After yet another surgery, this time a gross total resection where surgeons were able to remove the entire tumour, Blake had another 10 rounds of radiation to the new tumour bed, followed by a second set of experimental treatments.

But after 2 rounds of the new treatment, an MRI showed yet another new tumour – this time in the occipital lobe of his brain. The neurosurgeons were again able to remove the entire tumour, and Blake received more radiation to the new tumour bed.

Desperate, Blake’s parents began researching all available options, and finally uncovered a third experimental treatment – Blake became the first person in the world to try it for Atypical Anaplastic Ependymoma.

Unfortunately, after one and a half rounds of the third experimental treatment, Blake began showing symptoms of tumour activity, and an MRI showed three more new tumours – two on his spine, and one in his brain, on the pons, which is responsible for controlling autonomic functions such as breathing, relaying messages between the two hemispheres of the brain, and transferring messages between parts of the brain and the spinal cord.

Heartbroken, Blake’s mother and father knew that it was time to stop fighting the cancer, and focus instead on loving and enjoying the last days with their precious boy. After battling for 4 years, there were no more treatments available, and surgery couldn’t fix him. Up until then, they had been facing a single tumour at a time, but as the cancer gained the upper hand, more and more tumours began to appear.

Yet Blake would not let cancer stop him from living his life to the fullest. Blake’s Uncle James says:

  • talking to Blake always felt like I was talking to a young man much older than he was – his maturity was truly unforgettable.

He had already met the love of his life, Chloe – a fellow warrior fighting medulloblastoma, a type of brain tumour which affects children 10 times more often than adults, and is the most common malignant brain tumour in children. Thanks to researchers such as Perth’s Dr Nick Gottardo, medulloblastoma now has average survival rates of 60-80%, but treatment is very aggressive and has numerous side effects.
Just weeks after his 7th birthday, Blake proposed to Chloe on bended knee beside her hospital bed. Blake asked his Uncle who would look after Chloe when he was no longer around, telling him “she shared my journey with me”.

As the end drew near, Blake was often in agony despite all attempts to control it. He became incontinent, was having regular seizures, and was always hungry because of the steroids he was taking. But underneath it all, he was still a feisty young man determined to make the most of life, and share his love with the world.

On May 29th, 2014, the same day his darling Chloe successfully completed her final dose of chemotherapy, one of the tumours caused a bleed in Blake’s brain, and he passed away in his mother’s arms. He graced the Earth with his presence for 7 years, 2 months and 23 days, but his spirit will continue to touch lives for many, many years to come. He is gone, but he will not be forgotten.

Blake – 6 March 2007 to 29 May 2014

This post is in support of International Brain Tumour Awareness Week.
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