Ellise’s Story
“She went from being a happy, healthy girl – into ballet, gymnastics, really vibrant – to not being able to walk, and not being able to use the right side of her body.”
“Blindsided. Absolutely blindsided.”
This is how Brent Wilson described getting his daughter Ellise’s diagnosis. The doctor approached and dropped to her knees as she braced herself to share the news: It was an 8.5cm by 8.5cm tumour in four-year-old Ellise’s brain.
“She went from being a happy, healthy girl – into ballet, gymnastics, really vibrant – to not being able to walk, and not being able to use the right side of her body.” Abby Wilson, Ellise’s mother
They needed to move quickly.
Ellise was sedated and strapped into a stretcher, clutching a teddy bear for comfort. The helicopter came and whisked her and her mother away while Brent was left standing at the helipad by himself. His next step was to drive an hour home, alone with his thoughts, to be a rock for his young son Archie while Ellise’s fate was out of his hands.
“Our whole world was just flipped upside down, in a day. That’s it. You just gotta be there for them. I never really understood mental health before this. I always considered myself mentally strong. But this really was the kick to make sure you look after yourself, because that’s the key to staying strong for your family.” Brent Wilson, Ellise’s father
Brent is a builder and his wife Abby is in the health sector. Despite their medical knowledge, the diagnosis, new terminology and treatment regimes added an unfathomable layer of trauma and uncertainty to their lives.
“Listening to their trembling voice talking about when they were given the news no parent ever wants to hear, just makes your heart sink. They were a lovely whānau to support. I felt comfortable and trusted.” – Pam Royal, Family Support Coordinator
That’s where Child Cancer Foundation’s Family Support Coordinators come in. They meet with families after diagnosis for one-on-one support, clarity and comfort, and stay with them every step of the way. It’s an essential service to families when all they can do is put one foot in front of the other on their cancer journey.
For the Wilson family, it was Pam who stepped in.
“She always comes with a hug, and patience, and understanding. She comes with toys for the kids, and a knowledge that we can pull on when we’re not sure what direction to go in. She’s been a source of comfort and friendship and inspiration and guidance, to let us know where we’re going on this new journey – not that anyone knows.” Abby Wilson
Despite her immense challenges and changes, Ellise was determined. Her perspective is innocent and refreshing. She hasn’t let anything stop her – not the diagnosis, two neurosurgeries, extensive radiotherapy, nor being told she might not walk or talk again.
After six months at Starship, Ellise and her family were elated that she not only relearned to walk and talk but got to go back to school at the start of the year. She and Archie loved it! Though the toll on Ellise’s body meant she needed a lot of extra rest.
After everything so far, the family learned Ellise has two more tumours that currently have no treatment options.
“We thought we were on the other side, and then we got the devastating news that she has two new brain tumours. And that was almost more devastating than the news the first time around” – Abby Wilson
They try to balance the heartbreak and concern for the future with wholeheartedly enjoying the moments they have now with lots of family camping adventures at places like Ohope, Shelly Beach and Stoney Bay, and plan to explore the rest of Aotearoa to keep making the priceless gift of family memories.
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