Bohn-Bitcheno Story – Dunedin
Seven-year-old Ayla lives with mum Yvonne, dad Nathan, five-year-old sibling Mikah and their recently adopted cat Te Awa, who they all adore. Life took an abrupt turn when Ayla was diagnosed with Acute Lymphoblastic Leukaemia last year. Ayla’s mum Yvonne shares their journey below.
Ayla and Mikah are very close to their extended family and before Ayla’s diagnosis we had a busy, fun-filled life. Ayla was very social and loved going to school; from a young age she excelled at arts, crafts and singing. We loved going on outdoor adventures as a family and Ayla had so much enthusiasm for life – I called her my adventure girl!
We first had an idea there was something seriously wrong with Ayla on the 3rd of May 2021. It was the first day of term and Ayla had had a lingering cough throughout the holidays. She’d been unusually fatigued, regularly falling asleep in the car, and she wasn’t up for as many outings as usual, all of which was very out of character.
We tossed up whether to send her to school but decided to take her to the doctor instead. After I described the symptoms, the GP, Laura, asked whether she’d had any unusual bruising. This prompted me to point out a bruise that was taking a long time to heal. I also remembered that she’d had some tiny little bruises, almost like a rash, that I now know is called petechiae bruising. The doctor felt Ayla’s lymph nodes and liver and immediately called the paediatric department at Dunedin Hospital. They confirmed that Ayla should have a same day blood test.
After the blood test I went for a bike ride to clear my head. That’s when Laura called. She said the test results showed that Ayla’s white blood count was very low, and we had to take her to the hospital immediately. I started hyperventilating and collapsed on the side of the road. I managed to stammer ‘Is it cancer?… it’s cancer, isn’t it?’ I already knew what the answer would be. The doctor replied she couldn’t confirm it but based on the blood results it seemed likely.
At Dunedin hospital we were told that it was most likely leukaemia, although there’d need to be further tests to confirm it. We were told we’d have to go to Christchurch for treatment the next day. That evening Ayla was given red blood and platelet transfusions to top up her low blood counts.
Over the first few days in Christchurch Ayla had more blood tests, transfusions, scans, a bone marrow biopsy and an operation to insert a portacath which makes taking blood and giving IV medications easier. Based on the biopsy the doctors were able to give us a formal diagnosis of Acute Lymphoblastic Leukaemia (ALL). The treatment would be very long – over two years in total – but survival rates are high. The first five weeks would consist of intensive chemotherapy and steroids with the aim of achieving remission. We would then be able to go home to Dunedin for the remainder of her treatment.
When the staff at Dunedin hospital started discussing how to get Ayla and me to Christchurch my immediate response was, “we’re all going.” I had no idea how we’d do it, but I knew I couldn’t go without Nathan and that Mikah wouldn’t cope with being separated from either of us. Thankfully the social worker was immediately on board and said she’d contact Ronald McDonald House. It was a huge relief to know that whatever the next few weeks held for us, we’d be facing it together.
Initially Ayla was supposed to be able to join us at Ronny McDonny, as we called it, but she unfortunately developed severe side effects. All up our stay in Christchurch was extended to eight weeks and she was hospitalised for most of that time. Eventually some of her major organs, including her liver, stopped functioning. I’ll never forget getting a call from Nathan one afternoon telling me that the doctors had decided to transfer Ayla to ICU. I walked to the reception area of the house and broke down. The staff were just wonderful, one gave me a big hug and listened to me, while another took Mikah out for a hot chocolate so I could have space to work through my emotions. Thankfully, with the increased level of care in ICU and some additional interventions Ayla turned a corner and started improving fairly rapidly.
Having a severely sick child can be very isolating and RMH alleviated so much of this. The best thing for me was the staff and the other families staying there. By the end of our stay we and the other ‘long termers’ would eat together every night; our children played together in the evenings and if one of us was having a particularly bad day we’d look after each other’s kids. We’d counsel each other, cry with each other and share details about our children’s conditions that we wouldn’t have felt comfortable telling other people. There was also tons of laughter as we found the funny and absurd amongst the devastation. We were in survival mode and everyone else there was too, so we understood each other in a truly special way.
Child cancer is extremely hard on siblings. Mikah learnt about the fragility of life at far too young an age. However, despite the trauma he experienced, he has fond memories of our time in Christchurch and I’m so grateful for that. For months after we came home Mikah would ask “When can we go back to Ronny McDonny?”
The cooked meals were also a huge help. While we missed home I was glad not to have to be managing the food shopping, cooking and all the normal things that make a household function. At RMH it was all taken care of for us, which allowed us to fully focus on our children’s needs. I can’t imagine how I would have done it without Nathan there. Being able to make decisions together was critical to me. It was also important for Mikah to have somewhere he felt so at home and still get to see both of us – even if separately.
Ayla’s still on treatment but life is now pretty similar to what it was before she was diagnosed. She’s going to school every day, which she absolutely loves. She enjoys all the activities she did before she was diagnosed, and more! Her treatment will finally finish on 13 July next year – a day we’re all very much looking forward to! When we left Christchurch she would barely walk. Right now she’s taking her first ever skiing lesson. She has such a zest for life. After everything they’ve been through we try to give the children as many different experiences as we can. Adventure girl is back!