“I knew then that it was possible that we could lose Ayla.”
My name is Yvonne, and I live in Dunedin with my partner Nathan and our children Ayla and Mikah.
In May 2021 we were told the heart-stopping news that Ayla had leukaemia at just six years old. Nothing could have prepared us for how hard the following months and years would be for our family.
Ayla had been unwell for a few weeks. She was really tired, which was unlike her. She also had a cough that wasn’t going away. We took her to the doctor who noticed she had some funny bruising and a swollen liver.
The doctor told us to get some blood tests done straight away. That confirmed the worst possible outcome. Ayla had cancer.
When I heard, I just collapsed. I broke down and started hyperventilating.
The nearest childhood cancer treatment centre for us was in Christchurch. A five-hour drive away from home. We were told to go there immediately.
I was in a state of total anxiety. I tried to focus on the practical things we needed to organise but I kept hyperventilating. There were a lot of ‘what ifs’ and unknowns.
Thankfully, Child Cancer Foundation was there for us straight away. It was so nice having someone there to explain how everything worked and just to have someone to talk to.
The Foundation also paid for my mum to fly up and join us in Christchurch. That was so helpful, because it meant we could have our support network around us from the get-go.
Ayla was supposed to go through five weeks of initial treatment in Christchurch Hospital. This involved chemotherapy and steroids. But unfortunately she had some severe side effects.
We watched Ayla get worse and worse. Her liver was shutting down.
It was really hard to watch her fade. Her bright bubbliness started disappearing. She became a shell of herself.
By this time, she had been in hospital for six weeks. Then we were told that she needed to be moved to ICU.
Ayla’s tummy was blown up like a pregnant belly. She was turning yellow. The doctors needed to operate to get extra lines in her so they could give her more medication to support her liver.
It was quite a high-risk operation. Up until then, the doctors had been positive and reassuring. But one took us aside before the surgery and said, “This might not go well.”
That moment was awful. I knew then that it was possible that we could lose her.
Thankfully, the operation went well. Ayla came off the ventilator straight away and started breathing on her own. Thanks to the extra medication she started to get better very quickly.
Within a week Ayla was back on the regular ward. A week after that we could leave and stay at Ronald McDonald House. Then a few days later, we were able to go back home to Dunedin.
I remember the first time we were able to take Ayla out of the hospital. She was laughing at the ducks who were bobbing up and down in the water. It was amazing to see her personality come back.
She was excited about the world again.
The rest of Ayla’s treatment would involve two years of chemotherapy, a mix of infusions and daily pills at home. At first it was really scary. It’s a lot of work and a lot of responsibility for Nathan and me to get it right.
Our family support coordinator from Child Cancer Foundation, Vicki, has been really amazing. For almost two years she has called every couple of weeks to see how things are going and offer support. Having her check in on us is such a relief to some of the loneliness of having a child with cancer.
At the end of 2021 we were exhausted from everything. We’d hoped to see more improvement in Ayla’s energy levels, and we were getting really tired of that phase of her treatment.
Vicki knew we were struggling, so she organised a restaurant voucher for Nathan and me to enjoy a meal out together.
It was such good timing. We were under quite a lot of financial strain at the time because I wasn’t working, and Nathan had had his hours reduced due to Covid-19. We were also nervous to let someone else look after Ayla.
So the voucher forced us to organise something. And it was absolutely amazing. That night, we could focus on something else, enjoy some delicious food and have a break for ourselves. It was such a simple gesture, but it was a real turning point for us. It gave us new energy to help us keep going.
In July, Ayla will finish treatment. It’s been two years since she got sick and she’s doing really well. She knows what it’s like to miss out on things, so she just wants to make the most of life.
But there are still a lot of challenges. Ayla still has varying levels of energy, so we have to remind ourselves not to push her too hard.
It has had a big impact on Ayla’s sibling Mikah as well. Mikah has a lot of energy and needs a lot of attention. I think part of that is because we have been so focused on Ayla’s treatment for the past two years. Because of how sick Ayla has been, Mikah often worries about members of our family dying, so needs a lot of emotional support.
Nathan and I are exhausted too. Before Ayla got sick, I was training to be a primary school teacher, but I’m still not ready to go back to my studies. I am trying to go easy and be gentle on myself.
This experience has had a huge impact on my mental health, and I still struggle with the uncertainty and not being able to trust the future. Vicki recognised this and organised counselling for me, which has been really helpful. The sessions were all paid for by Child Cancer Foundation.
Your donations really do make a difference. Please donate today to help our family through the ongoing challenges of having a child with cancer.
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