October 28, 2014

Erin’s photo taken on the veranda at RMH Ronald McDonald House Westmead back in February this year. The DIPG tumor had progressed again. Erin chose to undergo a second round of whole brain radiation (knowing it was palliative). It helped for a short while, but it defeated Erin a few months later.

It’s actually really not acceptable to watch your child’s body fall apart, to lose all bodily functions apart from breathing, which is sadly the final organ to fail. DIPG is an extremely cruel form of pediatric terminal cancer. Children are aware of everything around them whilst they are dying, trapped inside a vegetative state without even the ability to communicate. The average prognosis is 9 months from diagnosis and this hasn’t changed in decades.

We watched Erin die. Erin knew her death was caused by lack of pediatric brain cancer research funding. Erin recorded herself saying this multiple times. It is beyond words, too difficult to comprehend any child, my child, experiencing this torment. Cancer is a horrific death for children and we need a cure NOW!

“No other kid should suffer like this mum”… a few of Erin’s last words