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The Story of Eva, Warrior Princess

Eva was two years old when she was diagnosed with Grade 2 ependymoma, a slow-growing tumour in the back part of her brain.

She first became unwell in December 2015. On seeking help, her mum Ariana was told multiple times by doctors that it was viral, until April when they finally ended up in the emergency department.

The brain tumour was discovered the next day, and two days later she was having brain surgery. They received the official cancer diagnosis one week later, and Eva didn’t go home until June.

Because of the location of the tumour, the surgery dramatically affected her posture and balance.

“It was like having a newborn again. She had to relearn to hold her head up, to sit, and to walk again.”

But Eva’s family don’t call her Warrior Princess for nothing. Her superpowers are her drive, determination and self-motivation, and she re-learnt everything in fast-forward – much more quickly than expected.

After the surgery, she had both chemotherapy and radiation therapy. Ariana says the biggest struggle was trying to explain to Eva what was happening to her.

“How do you explain to a two-year old that she has to go through these painful, frightening treatments so that we can keep her alive?”

Thankfully, the treatment was effective and we were overjoyed to learn that Eva has been cleared of cancer. She will continue to have three monthly scans, hopefully decreasing in frequency, as she remains free from the disease. Her family is over the moon to see their little Warrior Princess returning to her usual crazy, happy-go-lucky self.

Eva is happiest when she’s at home with her family, including her two older brothers Zach and Tyler. She’s a very creative little thing, and loves dancing, drawing and reading books. She also loves selfies (you would too if you were that cute!) and mismatched anything!

Unfortunately, she still suffers many side effects from the tumour and her treatment, and may continue to do so into the future.

Eva is deaf in her right ear, and only has partial hearing in her left. Extensive nerve damage has caused weakness through the right side of her body, ongoing pain in her legs, and a lopsided (but absolutely gorgeous!) face. Her right eye has no tears and she has to wear sunglasses to stop her eye drying out.

She has balance and coordination problems and so cannot jump or hop, and tends to veer right when walking or running (thankfully this is improving as she gains strength). Her speech is delayed and she has memory problems, and also suffers from constant earaches.

There are also some concerning long-term effects they must look out for. As Eva grows up she may have ongoing memory problems and behavioural issues, and there’s a possibility she wont be able to live alone as an adult, go to university, work full time or drive a car.

All of these side effects could be improved in the future with better, less invasive treatments. Ariana says the lack of research into children’s cancer is frustrating.

“It’s so important for the community to understand the importance of research in this area – not just for survival rates, but for the quality of life for children who undergo treatment at such a young age.

We are so, so grateful that Eva is still here with us – there are many parents who aren’t so lucky. But it is heartbreaking to think that to keep our child alive, we have possibly sacrificed her adulthood.”

The hardest issues they are currently facing are separation anxiety and general anxiety – not just for Eva but the whole family. She is extremely dependent on Ariana and struggles in new and crowded environments. It’s not hard to imagine why, after what they have been through!

But the family are part of an amazing support network and draw strength from the people around them.  And Eva is about to start a specialist rehabilitation program with intensive occupational therapy, physiotherapy, speech therapy and psychiatry all with the aim of improving her memory, speech and coordination issues.

Above all, Eva’s family are just appreciating having their little girl well, and home with them.

“We really are just enjoying more time as a family and relaxing together without a hurry or stress on what ‘the norm’ is anymore. It is a wonderful place to be and we look forward to Eva doing what she does and doing life her own way, even if it’s not the same as everyone else!”  

You can purchase prints of Eva’s artwork here.

 

 

Author
| Hannah Moss | Moss Copy Creative Communications
www.facebook.com/mosscopy/ @hannamossity |

Artwork by
| Janet Pan | Little Sketchy
www.facebook.com/littlesketchyaus/ | @littlesketchyaus |

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