Ainsley Tonks lost her childhood, her health and three years of her schooling to cancer.
And perhaps most sadly of all, the Taupō 14-year-old, who is now in remission from B-cell acute lymphoblastic leukaemia cancer, says she has lost her trust in people.
The health system which cured her also cycled her through an endless amount of doctors, nurses, therapists, psychologists and all manner of health professionals.
Many saw Ainsley a few times and then disappeared from her cancer journey altogether. After a while she felt she no longer wanted to put her trust in people being there for her.
Diagnosed after a lump on her head refused to go away, the actual treatment was short. Ainsley’s cancer was blasted into clinical remission within four weeks.
But from there she was looking at preventative treatment of at least two and a half years — in her case it took three — to keep it from returning.
That was the hardest part and it included multiple sessions of chemotherapy, lumbar punctures and bone marrow aspirations. Ainsley was very sick for almost the entire time.
“I had chemo pills every day and I had chemo every week and then every month and then it just kept slowly moving out. There was one type of chemo that Rotorua [Hospital] could do for me but most of the important ones had to be done in Auckland.”
If you want a graphic illustration of just how hard the treatment was, Ainsley opens up the case that holds her beads of courage.
These are beads given to children undergoing cancer treatment. Ainsley’s case is overflowing with them. Yellow ones for hospital stays. A stack of around 30 for blood transfusions.
There are black “poke beads” — heaps of them. Each represents every time the skin is broken from a needle, although Ainsley only received one per day regardless of how many times she was poked. Some days it was too many times to count.
“I was having two transfusions a day sometimes, up to four when I was in intensive care,” Ainsley says matter of factly. She was so ill that she was in paediatric intensive care for two months, including over Christmas 2017.
“They put a present in front of me and I started crying. They found out it was because I couldn’t open it. I could still talk, but my fingers and everything had stopped working.”
The treatment wasn’t only hard on Ainsley.
Her parents Yvette and Wayne had the heartbreaking task of watching on as their daughter became sicker and sicker, before she finally turned the corner. Their bright, bubbly 11-year-old who loved animals and school lost her beautiful curly hair, suffered three agonising spinal fractures because the chemotherapy affected her bones, had to give up everything she enjoyed and had immunity that was as low as could be.
She had to leave school straight away, and lost all her friends. Other children were scared of talking to her because she had cancer and worried they might say something wrong.
She made some friends in hospital, but overall it was a lonely time.
After Ainsley’s treatment finished last year she started at Tauhara College, having missed her intermediate years entirely. Although it was tough going back to school not knowing anyone, college has been enjoyable, particularly her STEM (science, technology, engineering and maths) class; and she has made some new friends.
Despite the massive amount of school she has missed, she is doing well and has done a lot of catching up at home with the support of her parents.
She is back riding a horse, with care, and can do some sports, although running and playing netball are too difficult.
There have been some bright spots.
The family made a trip to Queenstown to celebrate at the end of Ainsley’s treatment and she had a week during the summer holidays at Camp Quality, a camp for children and teens who have survived cancer. She horse trekked, swan, rode on jetskis and water biscuits, “sang a lot of songs around the campfire” and made new friends.
It was a good time.
But Ainsley thinks the strain of the last four years is still catching up with her.
“Just recently my mum said ‘I think you have depression’, and I think I do, because I keep myself in my room and don’t really do much, but after three years of sheer hell I guess you can’t expect not to have depression or some sort of sadness in your life.”
Ainsley says she thinks she also has trust issues.
“I went through a lot of people that were psychs [psychologists] and stuff and there was only one that I trusted.
“And it took me a long time to trust my own parents because it seemed to me that I was always sore and hurting. My mum and my dad both said that if they could take the pain away from me and on to them, they would.”
Ainsley is in remission now (“they can’t actually say you’re cured because you’re not cured until 10 years later”) and every three months she has a check-up with a paediatrician.
“I’m happy how I was with my childhood but at the same time I wish I could go back to how I lived my life, and run and play netball and all that type of stuff. I was hoping that when I was older I might be able to get into the Silver Ferns but then I got diagnosed with cancer. Now, I want to become a farmer or a vet.”
Ainsley was looking forward to returning to school this week and seeing her friends again, doing STEM and learning about te ao Māori.
Another thing that brings her joy are her much-loved pets: her faithful Staffordshire terrier Lily who Ainsley missed terribly during her hospital stays, her three cats and her two rabbits, although she had to give her horse away when she got sick.
She pauses when she’s asked to rate her life out of 10.
“I’d give it at least an 8. I’ve got somewhat of a good life but I wish I could improve it. My life’s not ever going to be 10 again because a lot of stuff has happened to me and it’s not going to be back to normal. I’ve got a new normal, but it’s not how I’d like it to be.”
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