In 2012, I was blessed with the arrival of our baby girl Annabelle. Filled with life, she brought so much light and joy into this world. Like any Mother, I kept on the lookout to protect my child from harm, to ensure she grows up into a beautiful girl and from there an amazing woman. For two years my family knew joy like nothing before. Annabelle, so curious and cheeky, learnt so quickly and people flocked to greet her and be in her presence. I realised she wasn’t just a blessing to our family, but to everyone around her.
It was August 2015 when I first started to notice Annabelle constantly rubbing her eyes and nearly every night she had a night terror that woke her up screaming and crying. Shaken with concern, I kept an even closer eye on her, with my mother-intuition telling me something more was at work here.It was when she started to walk with a wobble I rushed her to a doctor.
On September 29,2015, Annabelle was diagnosed with DIPG.
DIPG, Diffuse Intrinsic Pontine Glioma, is a brain tumour that rests in the pons of the brain. An area which controls essential bodily functions such as the heartbeat, breathing, eyesight, and balance. DIPG is an aggressive brain tumour, there is no cure for it. The median survival time is just six to nine months from diagnosis. And that’s what the Doctors told us to do, with Annabelle being the only child in Perth diagnosed at the time, we were to enjoy our precious time with her as there isn't any cure.
They put her on steroid to help with inflammation whilst we waited for her radiation to be scheduled. She went under 30 sessions of radiation over the period of 6 weeks at Sir Charles Gairdner Hospital. But that only bought us some more time with my precious baby, and with no known cure, the Doctors still had their grim prediction.
So we went back to Vietnam in early January 2016, thinking we would spend some 'honey moon' quality time with her and the family so she will be surrounded by all that love her. Listening to the Doctors, never once we would think she could make to almost two years period. But, in early May 2017, her routine MRI scan show progression.
A fire lit within me and immediately we went on the hunt for any trails/treatments available. Searching globally, we came across IA (intra arterial) treatment in Monterey, Mexico. After endless sleepless nights, discussion, talking to other parents having their child in Mexico from all over the world, we decided to take her there with no looking back with the help of our family and friends.
They combined around 11 cocktail of drugs go in through the groin and then through the back with catheters, and inject a certain sequence of drugs to the brain stem and then they combine with Immunotherapy. We are looking at lifelong treatment till we get NED.
However, this treatment comes with a price. Each time we go in for treatment, it would cost around $30,000USD with no insurance cover. And because of the distance, we have to stay here till December 2017. The expenses/ lodgings adding up together with the treatment.
Never have I thought we have to go through this painful journey, but now that we are I hope to find a cure for my beautiful Annabelle.