I have two beautiful girls Alisija and Sindi. Our Sindi is a voluptuous, happy baby. She was a loud breather at night time.
Through 18 months of investigations, we ended up at PMH having a bronchoscopy. From this it was found that Sindi’s vocal chords were partially paralysed. Alarm bells were raised and Sindi was sent to have an MRI.
It was then our whole life was turned upside down.
We were told that Sindi had a tumour in her brainstem. She needed surgery straight away to place a shunt in her head to drain fluid and a tracheostomy to help clear fluid from her throat.
We were told that our little 2 year old would never eat or drink again. How can you not be able to give your toddler a bottle of milk at night? Or any other food?
Having a trachy requires 24 hour care. I stopped work to do this myself. My parents put retirement on hold, sold their home and moved next to us to help.
Mum did all the cooking and cleaning, Dad did our food shopping and school drop offs and my husband worked to pay the bills.
My sole focus was tube feeding Sindi and caring for her trachy. Sometimes over 100 suctions were needed in a day.
Sindi took all this in her stride, amazing little girl.
Due to the position of Sindi’s tumour, a biopsy couldn’t be done to tell us what type of tumour it was.
Sindi’s treatment was an international regime of chemo. No research or specific treatment was available for tumours in the brainstem.
Sindi underwent 8 rounds of 6 weeks worth of chemo. Her tumour simmered away.
It wasn’t until one day I noticed one of her eyes turned in. An MRI showed her tumour had grown into the back of her head and life saving surgery was our only option.
Thankfully after 10 hours of surgery, it was a success. Half the tumour was shaved off.
Our brilliant surgeon, Dr Sharon Lee, cut out as much as she could without touching the brainstem. We were told we had added years to Sindi’s life.
After 10 weeks in hospital recovering, we finally went home. I wasn’t happy with Sindi’s progress so another MRI was done. It showed the tumour had turned aggressive. Our only option was radiotherapy.
Sindi had to learn to walk again.
Radiotherapy didn’t help and we were told to sort our affairs.
How do you sort your affairs in preparation to watch your child die?
The next two months were even more heartbreaking. Sindi lost the mobility of her legs, arms and even smile.
I needed to resuscitate her twice then put her permanently on a ventilator.
The morning of 23 May with my baby girl in my arms her heart stopped beating. My baby was gone.
We will remember her for her love of the colour purple, butterflies, one direction and Mr Men books.
We too once were are normal, happy family. Please share awareness about childhood brain cancer to avoid this happening to anyone else.