Never feel alone - Rupert's Story
For a while after her youngest son Rupert was diagnosed with cancer, Lara couldn’t read the Child Cancer Foundation vision that “no family walking the child cancer journey should ever feel alone,” without breaking down in tears.
“I am originally from the UK, and we had just moved to Auckland from Kerikeri. We didn’t know anyone and felt scared, alone and just lost.”
Rupert was three at the time. He had fallen off his trike and hurt his leg. He had some pain but then also developed a rash, and Lara felt there was more to it than just the injury itself. Taking him to the hospital felt like an unnecessary step for something that seemed so minor, but later that same day tests confirmed a diagnosis of leukaemia.
“Our whole family were in disbelief. You are just running on adrenaline. You don’t realise how terrifying it is and there are so many firsts – the first general anaesthetic, the first blood transfusion, the first dose of chemotherapy – it’s a daunting experience,” says Lara. “I didn’t realise life can go on. But then it starts to become normal, and it shouldn’t.”
One challenge for Lara and Rupert’s Dad Jeremy was how to deal with their other children, Jasper (9 years), Ben (13 years) and Felicity (14 years). “Two days after Rupert was diagnosed our Family Support Coordinator arrived at the hospital with a special blanket and other essentials, and the Beads of Courage” says Lara. “She was there for Rupert and us, but never forgot about his brothers and sister.”
They all took part in the Beads of Courage programme, something Lara says helped them all focus on the positives during a dark time. “Jasper was six years old at the time and took his beads to school and told everyone “my brother has cancer”. Lara says they were never ashamed of sharing what was going on, and Rupert has been overwhelmingly positive about his experience.
“We have a tradition of holding a family meeting every week – it even has its own theme tune. We talk about the great things that have happened in the past week and celebrate successes together,” says Lara. “We stopped those for a while, because the questions were always bad. But when Rupert was able to come home he began calling the meetings again. He decides who talks when, and just thrives on making people smile; making those around him happy.”
Rupert is now on maintenance and doing well. He has been on one of four branches of a clinical trial – something that was a big decision for Lara and Jeremy, but the traditional treatment had been making him so ill they needed to try something else.
After their experience, Lara wanted to feel useful and give back.
Mary asked if I wanted to speak to the mum of a newly diagnosed child and I agreed to meet up, and am grateful that I did. I didn’t want Rupert’s illness to be a dirty little secret – something I was ashamed of sharing. I didn’t want to feel like a victim
As a family, we have all had our own experiences. We have our own stories from the past few years and they are all different. I feel a sense of pride in what we’ve been through, how strong they have all been and that we are still intact.”
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