Tucking my daughter, Ruby, then five, into bed, I kissed her forehead.
‘Goodnight bubba,’ I smiled.
Just then, my youngest daughter, Tilly, three, jumped in with Ruby for a snuggle.
The best big sister, Ruby held her until she fell asleep.
Waking up the next morning though, in August last year, Ruby’s cries were deafening.
‘Mummy!’ she called through breathless tears. ‘My head is really sore.’
Throughout the day, she developed a cough and felt dizzy.
Taking her to the doctor, they assured me it was just her bronchiectasis.
Diagnosed with the lung condition as a bub, it meant the airways in her lungs were widened, and flare ups often caused coughing and shortness of breath.
By the end of the week, she was feeling a bit better.
But over the next six weeks, she struggled to ride a bike and jump on the trampoline.
‘I’m too dizzy,’ she said.
‘There’s something wrong with our little girl,’ I pleaded with the GP.
A paediatric nurse myself, I was worried.
The doctor matched her symptoms with a bacterial infection in the lungs.
With Ruby’s respiratory specialist away on holiday, she was prescribed antibiotics.
The next morning, we drove to the Sunshine Coast to see my husband Andrew’s parents, Chris and Ray.
Spending the morning at the beach, Ruby was so happy.
Walking in the soft sand as we left though, she stumbled every few steps and couldn’t walk straight.
My gut told me it was something sinister.
Driving to the Sunshine Coast University Hospital with Ruby, while Andrew stayed with Tilly, I pleaded with doctors for an MRI.
‘There’s a big mass on her brain,’ a doctor finally said.
I was distraught.
'There's a big mass on her brain.'
Transferred to the Queensland Children’s Hospital in Brisbane, Ruby had further testing.
‘Ruby has an inoperable brain tumour called diffuse intrinsic pontine glioma (DIPG),’ a doctor said.
Meeting with the oncologist hours later, he confirmed the worst.
‘It’s the deadliest type of childhood cancer. No child survives,’ he said.
She only turned six 11 days ago, I thought.
Hoping to slow the tumour’s growth and give Ruby more time, we began palliative radiation therapy.
With appointments scheduled for after school, Ruby walked into every radiation treatment holding hands with her best friend, Charlie.
'It's the deadliest type of childhood cancer. No child survives.'
‘Doctors are trying to fix your wobbly legs,’ I said as she took the scary treatment in her stride.
One time, as the nurses peeled off the mask she had to wear, Ruby giggled, ‘Peanut butter and jelly time!’ She was excited for her afternoon tea!
Sadly, after six weeks of Monday to Friday treatment, Ruby didn’t seem any better.
Losing the use of her right hand, Ruby grew more unsteady and could only walk with support.
But still she faced life with a smile.
Using her left hand, she re-learnt how to write, colour and draw.
Desperate, I joined support groups, researched clinical trials, and even imported a drug which had shown promise treating DIPG from Germany, paying $20,000 for a three-month supply.
‘Go make memories,’ Ruby’s oncologist advised.
So we did.
At Christmas, Andrew created a display in our front yard with a snow machine.
Ruby loved surprising passers-by with snow showers!
We took Charlie with us for a trip to Cairns, where the girls got to stroke a dolphin.
During a sleepover at a zoo in Canberra, Ruby fed a giraffe!
And this February, five months after her diagnosis, I organised a prom night for Ruby at our house.
By now, Ruby’s beautiful face had swollen due to the steroids she had to take.
We had our make-up done, and Ruby walked a red carpet in a white ballet dress, wearing a tiara.
She felt wonderful!
On March 1, Ruby called out in the early hours.
‘Mummy, it’s so sore,’ she cried, holding her head.
A follow-up MRI in the morning confirmed what our hearts already knew.
The cancer had spread and her little body was shutting down.
Our girl was transferred to paediatric hospice Hummingbird House, and we sat at her bedside telling her how much we loved her.
At 11.58pm that same day, Ruby took her last breath.
She’d fought bravely for nearly six months.
Keeping her spirit alive, we held a celebration of life party at our home a week later, releasing butterflies for Ruby.
Hoping to help other kids, we donated Ruby’s brain tumour to Professor Matt Dun, a cancer researcher who’d lost his daughter Josie, then four, to the same cruel disease in 2019.
Now we’re raising funds through Rainbow for Ruby events, for DIPG research in Australia.
And in honour of our Ruby, her school has added ‘kindness’ to their school values. ‘Be kind for Ruby’ is our message.
‘When’s Ruby coming home?’ Tilly often asks.
‘Look for the butterflies and rainbows, bubba,’ I say.
I know in my heart, our precious Ruby is never too far away.
RUN DIPG, a charity aiming to improve outcomes for patients and loved ones affected by DIPG, is accepting donations in Ruby's memory.
'Look for the butterflies and rainbows, Bubba.'