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.
Thank you everyone for your supports over the last months, sure it's not an easy road that we are facing but eventually, we will get there. Please continue to share this page, follow Annabelle on her journey #fightingdipgwithannabelle on Facebook to keep us going. Give her a chance to grows up and a special person as she is. Thank you all so much from the bottom of my heart. We are forever thankful for all your helps
Other children gets praised for whatever normal things they do in life (finish their veggies, get their homework done...etc). Annabelle and like many other children suffering DIPG gets praised for being brave with the pain that they are induring and no fighting with doctors or nurses. I am longing for that normal life that we should have like any other normal people out there.
Annabelle has had her first treatment done on 24/5 and scheduled the second one together with immunotherapy on 13/6 and blood draw a week before that 7/6 and light chemo for two days on 11-12/6. It gonna be full on for us here but we will overcome this. I am emotional and physically exhausted but I'll do whatever it take to fight this monster with her.
Please continue to help us during this battle by sharing and donating so we can keep on fighting this disease. The treatment cost us $26,000k USD for each time plus hospital fee and other things.
I like to thanks everyone that has been sharing and donating to help Annabelle. And the morale help that we are receiving from people and other parents here in Monterey. Thank you everyone from the bottom of our hearts.
So last night Annabelle and I headed our way to Monterey, Mexico for the treatment. She is very happy and think this is a 'holiday travel' and hey mama is all for it. We still have a very long way to go (flights and what gonna happens in this near future'. Annabelle knows she is going to see doctors but she has no idea what for. She knows she is sick but not brain tumour, I think it's a good think for her. Seeing my child so joyfully seeing other friends on the flight and at the playground here in Narita's airport make me feel happy but the same time I feel sick. There is a lot of what if in my mind. I'm praying for peace of mind...for cure and my girl to be 100% healthy again.
Please keep continue to pray for us and supports us by sharing and donate to her gofundme page so we can continue on with long, hard rocky road. And for Annabelle to live the life that she deserves.
Thank you all very much #miracleforannabelle
Hope For Annabelle :
A new treatment approach in Mexico using intra-arterial delivery of a combination of the latest chemotherapy and immunotherapy agents has shown a lot of promise for DIPG children, and we are hoping to get Annabelle in for the treatment. This treatment avoids the toxic systemic side-effects of chemotherapy, as it is delivered directly to the site of the tumor.
The treatment costs around $27.000 (AUD) per infusion, and Annabelle needs infusions every 3 weeks for about a year? In order to cover the cost of treatment, as well as travel costs to Mexico, lodging, and other health care expenses. we are humbly asking for support by donations.
Please join us in helping to give Annabelle a chance for hope and life. No donation is too small. Please share as much as possible! We thank you from the bottom of our hearts. #hopingmiracleforAnnabelle
Hi John Toohill.....that is cruel, their daughter having tried this treatment may help someone else in the future, regardless of whether it worked for her or not. These parents are doing all they can to save their child, dare I say, it could be your child/grandchild one day. If you can’t help, or don’t want to; fair enough but please don’t judge....
hi John Toohil, just to let you know I was a high tax payer too till my daughter gets very sick (and no.....I don’t receive any help from the government).....all the money thatve been using on this treatment was out of pocket and as Jessica said when your child needs help, you do whatever that you have to do. I hope you will never have to be in my position to even experience that. thanks for your time.
Isn't it typical...the people who say the nastiest things are the ones that aren't game enough to show their face. Maybe you should do your research John Toohill and release that this family have sold their home, and went somewhere else to get treatment which wasn't available anywhere else in the world.