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14
Jun
2019

Baby Sienna-Rose's brain cancer story

Jade-Marie is the mother of little Sienna-Rose, whose life was turned upside-down following her diagnosis with a rare form of brain cancer last month. Now, Jade-Marie is sharing her daughter's story to raise funds for vital brain cancer research, advocacy and awareness.

Jade-Marie and Sienna-Rose embrace.

By Jade-Marie Watson

Our baby girl has always had poor balance, but we thought nothing of it at first. She was still achieving all her development milestones for her young age on time. Nothing to worry about, right?

Wrong.

After an uncharacteristic bout of sickness, unsteadiness, lethargy and a high temperature in January this year, we took Sienna-Rose into our family GP, who recommended rest. 

In my personal diary, which I maintain regularly, I made the following entry prior to our initial visit to the GP: 

This poor, wee soul is buried under so much confusion in her own body. It doesn't work like she used to make it before. 

Her balance? Gone.
Her hand-eye coordination? Gone.
Her social skills? Completely out the window. 

All she wants is her mummy and daddy keeping her steady. She can't sit up without wobbling to the left or right. You can see her try so hard to push. 

"I've done this before. I can do it."
"Why can't I do it?" 

Sienna-Rose was uncharacteristically sick, unsteady and lethargic prior to her diagnosis.

Sienna-Rose's illness continued, so we decided to take things further.

Following a visit to the hospital, Sienna-Rose was diagnosed with gastritis, which is the inflammation of her stomach lining. The medication prescribed did little to ease her pain. If anything, it seemed to make her behaviour worse.

Her condition declined to the point that she was sleeping 18 hours a day, and during her brief waking hours, was unable to walk, crawl, or sit straight.

The tipping point for Sienna-Rose arrived on 11 May, with a fall from our couch causing her to hit her head. We rushed into hospital, where the most amazing doctor came and spoke to us and demanded an MRI on her brain. 

Within two hours, Sienna-Rose had been diagnosed with a brain tumour the size of a golf ball. A stage 4 medulloblastoma. We were heartbroken.

Sienna-Rose's MRI scan, highlighting the stage 4 medulloblastoma.

She had an external shunt fitted to drain the mass of fluid that had accumulated on her brain as a result of the tumour. In just 48 hours, more than 650ml of fluid had been drained.

14 May was locked in as the day of Sienna-Rose’s operation. The surgeon was able to remove 95% of the tumour, which was a great result. The remaining tumour was attached to a membrane and was too risky to operate. This was to be treated through traditional chemotherapy and radiation, which Sienna-Rose is continuing today. 

Our family's experience with brain cancer has driven us to play our part in the fight against the disease. I want to raise awareness of brain cancer, particularly in children, because nobody should have to experience what Sienna-Rose is going through.

My baby is now in remission, and we continue to face every step of her ongoing journey with brain cancer as a united front. 

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