Demi’s story
Demi was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on the 5th April 2022, at just 4 years of age. DIPG is an extremely aggressive stage 4 brain cancer that commonly affects children and kills more Australian children than any other disease each year, with a median survival rate of just 6-12 months.
Tragically, our Demi girl lost her life to this cruel disease after an 8 month battle, with her Mum, Dad and 3 year old brother by her side.
Demi was a little kid that could do it all. She was a very determined and intelligent 4 year old, kind to all those around her, popular at pre-school and amongst her peers, yet sassy and reserved to people she’d only just met. She would insist she could do everything herself, from writing her name at the age of 3 and a half, to riding her bike without training wheels at the age of 3 years 3 months, she made us so proud to call her our baby girl. But something changed at the beginning of 2022 around the time of her 4th birthday. This led us on a desperate quest for answers to help our girl get better and back to her full happy self again.
For the months leading up to this, we had noticed little things in Demi that had us worried – she was more emotional than usual, would become off balance and her smile was slightly asymmetrical. But most of all, she complained of feeling dizzy and was sporadically vomiting in the car.
Following visits to a Paeditrician, an OT and a Behavioural Optometrist, we were desperately searching for answers.
It was on the morning of the 5th April 2022, as we were on our way to preschool, that Demi took another turn for the worst, vomiting again in the car, like she had many times before, that we decided we could no longer wait for an MRI that was scheduled for 2 weeks time, as well as other blood test results to return from her paediatrician.
We decided to take Demi to the local Hospital Emergency Department in a final attempt to work out what was happening with her.
After stressing that Demi urgently required an MRI and that they needed to take us seriously, they provided an initial assessment before Demi bravely underwent an MRI, laying there still and frightened while mum comforted her holding onto her feet.
It was then the paediatricians explained that Demi had a mass on her brain and we would be transferred immediately to Westmead Children’s Hospital that night to await the next step.
We sat there numb, crying but at the same time, naive in thinking this would be a case of surgery and then everything would be ok.
As the hours went on into the night we started to fear the worst, and found ourselves frantically scouring the internet for answers.
The next few days were the hardest, as our Demi girl endured biopsy surgery on her brain to determine the full extent of the tumour, the neurosurgeon explaining that the tumour was diffuse and inoperable, until the point where we were sat down in a small room with an oncologist, radiation oncologist, a nurse and social worker and they delivered the final diagnosis – DIPG – the worst of the worst. A death sentence for our little girl who lay asleep and unaware in the ward down the hallway. We were told “There’s no cure and to go home and make memories”. And we sat there crushed…
Demi endured 6 weeks and 30 rounds of radiation therapy, each time being put under general anaesthetic, in a futile attempt to buy us some more precious time. Despite the brutality of her treatment, we tried to make it an exciting time for her. She found the joy in things also, as was her nature, dressing herself in the craziest outfits each day, dancing happily down the hallways as we walked in each day wanting to put the next sticker on her radiation sticker chart. That was our Demi girl.
Following her treatment, we went on several interstate holidays and many adventures to provide Demi with some joy in her remaining months on this earth. Memories we will cherish forever. Demi told us she wished for a baby sister and we promised her one, something which would come true with the arrival of her baby sister Zoey, but sadly they would never meet, arriving 4 months after her passing.
As the months went on after radiation, we managed to fiercely advocate to have Demi included in PNOC022, a worldwide combination drug therapy trial, as a last ditch attempt to save her life but it was the October of that year, only 6 month post diagnosis, that her tumour came back more aggressive than ever, slowly taking her functions one by one as we moved into Bear Cottage children’s hospice. We had the option to have re-irradiation of the tumour but fearing it as just make Demi more sick we decided to ask Demi if she wanted to have radiation therapy again. She was very decisive and shook her head no and told us she liked it at Bear Cottage, which is gave us comfort as I believe Demi was wise beyond her years and knew that there would be no benefit in enduring the treatment again.
As December approached, we sat there helplessly by Demi’s side as our little girl, just as she should have been getting excited about Christmas and going to school next year like any other 4 year old, could not fight anymore, losing her ability to walk, use her arms, talk, eat, drink and eventually we laid with her as she took her last breath. And we think about her and miss her everyday…
Demi was destined to have a positive impact on this world, and although she is no longer physically here on earth, we will use her story to help create a world with the hope that one day there will be a cure.
Our Demi’s bravery inspires us and gives us the strength we need to carry on her legacy. Each day, as a family, we try and live like it’s our last. Our motto in life is now #doitfordemi
