“I was quite a young mum. I had my eldest, Scott, when I was 21, then at 23, I had Josh. I left my marriage when Josh was six weeks old and a year later met Darren, the man I’m now married to. It was a couple of years later, when Josh was four, that he became unwell.
I had taken Josh back and forth to the doctor – he was lethargic, not eating and I knew something just wasn’t right, but I’d basically been told not to bother them. It was Christmas Day and he was vomiting, so we took a trip to the after-hours doctor.
He was diagnosed with glandular fever and still wasn’t well. But I demanded they take blood tests, which they hadn’t done because they told me glandular fever often doesn’t show up. The results were fine. But that night, Josh said he had a sore tummy. It turns out, he had an enlarged spleen.
I took him in to A&E, where they did more blood tests and, again, was told to go home. I refused – we lived in a little place near Whangarei at that stage with just one road in and one road out that often flooded, and there was a big cyclone forecast.
At 3am, a woman came in and told us Josh had cancer and they were sending us to Starship children’s hospital.
He was diagnosed with acute lymphoblastic leukaemia (ALL), the most common cancer in children and probably the best cancer to get if you’re going to get it. Back then, there was an 80 per cent survival rate. Now it’s up to about 90 per cent, but we never fitted into the good statistics from the word go.
Within a week of being diagnosed, Josh went from having a normal white cell count to having blood thick with bone marrow.
We lived at Ronald McDonald House for months while Josh was in hospital, and in between it all Darren and I got married.
After Josh’s second relapse, we had the choice of having no more treatment – he had been having chemo and radiotherapy – or we could trial a treatment that had only been used in New Zealand once before. He had eight months on the trial and they were a good eight months, but it didn’t work.
We had always been very open with Josh, and with Scott, about what was happening. Once Josh knew there wasn’t going to be any further treatment, he asked to go to my parents’ place, which he called ‘home home’.
We had five days there with Josh before he passed away.
He rode his motorbike and played with the dog, he helped milk the cows – all the things he hadn’t done for 18 months. He was a little boy for four days and on the last day, he wasn’t.
As a mum, I feel blessed – I was the first person to hold Josh when he was born and the last person, the person who loved him beyond my heart, to hold him.
Scott, who was nine, was really struggling so he went to stay with his dad for a couple of years. I couldn’t cope with all the sadness, so I ‘ran away’ with Darren, who had left his job to be with me and the boys.
We put pots, blankets, clothes and a diary in the car and drove – ending up at the bottom of the South Island. We slept in the car a lot and stayed with people we’d met during Josh’s illness. We would stop at rivers and I would walk one way and Darren would walk the other, and when we couldn’t hear each other yelling any more, we’d stop. I would just sit for an hour and cry, then I’d throw stones into the river and go back to the car.
After eight months, we came home. I was pregnant with my daughter Georgia, who’s now 17.
I spent two years being grief-stricken and angry. When I wasn’t crying and hurting, I was mad. I remember screaming at a young checkout operator just because she didn’t stack my groceries in the trolley. Hearing myself say it now is hideous, but the one good thing about it is it triggered something in me.
I became involved with the Auckland Branch of Child Cancer Foundation and became the deputy chair, then the branch chair. I was asked to do some contract work to develop more parent programmes and that turned into a full-time job. Five years later, I’m still here.
I donate part of my wage back to the foundation because I truly believe it does a great job.
You can’t underestimate the importance of parents connecting and supporting each other – I’m still friends with people I’ve known since Josh’s illness, and I’ve watched kids with cancer grow up and have children of their own.
I would change my story in a heartbeat at the chapter where Josh died, but I wouldn’t change what’s happened since.”
Quick fire
The most under-rated New Zealanders are… All volunteers.
The best thing about today is… I get to see some amazingly strong parents and their beautiful children.
Most Sunday mornings you’ll find me… With a cup of coffee and a plan that never comes to fruition!
Words: Julie Jacobsen
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