They told me she was 12 hours away from not waking up - if I had put her to bed, she wouldn’t have woken up.Emma, Ruby's mum
On 19 May 2014, little Ruby celebrated her first birthday. It was a bittersweet moment for her parents, Emma and Joel. For the past few months, they had watched their beautiful baby girl receive treatment for acute myeloid leukaemia – a rare form of the disease.
Subsequent tests at Princess Margaret Hospital in Perth showed that Ruby had a leukemic gene. It was only a matter of time before cancer formed.
I kept saying to mum, “she’s going to sleep all the time, it’s not normal” and mum said “she’s so pale. We need to take her to the hospital”
All before her first birthday, Ruby endured six gruelling rounds of chemotherapy, major surgery and countless lumbar punctures on her tiny body. As her treatment progressed, the pressures on the young family grew. Big brother Chayse went into full-time day-care as Emma and Joel embarked on an exhausting tag-team routine so one of them could always be by Ruby’s side at the hospital.
Heartbreakingly, Emma and Joel discovered that acute myeloid leukaemia is one of the more deadly leukaemia’s in children, with three out of 10 children diagnosed dying from the disease.
Instead of play dates and family excursions, the focus was on platelets, blood pressure levels and antibiotics. Simple freedoms, like taking Ruby for a walk outside in the pram, were unthinkable. Most people remember where they were when their child took their frst steps. For little Ruby, this milestone happened in hospital.
And in February 2015, they celebrated a different milestone – doctors declared Ruby in remission. Overjoyed, the family were able to spend some much needed time together. By August, after nearly a year in remission, Emma allowed herself to start applying for jobs again. Life was slowly returning to normal. But in late September Ruby relapsed.
I thought, “Oh my God, we can never do this again".
The first time round, Ruby’s bright, cheeky spirit amazed her doctors and nurses, who couldn’t believe how well she was doing. Emma and Joel had hoped this was a sign their baby would pull through, so to hear the news that she had relapsed was utterly devastating.
When children relapse with acute myeloid leukaemia, there’s no rule book. In Ruby’s case, her doctors Dr. Shanti & Dr Rishi, opted for an intensive treatment, including two rounds of high-dose chemotherapy, as well as a bone marrow transplant over Christmas.
Her walking, which had been so good, faltered as the leukaemia grew like a cluster on her brain, afecting her balance. It has been especially tough on Ruby’s brother Chayse.
Her brother watched the anti-smoking ads that say ‘Cancer Kills’ and he keeps asking me if she’s going to die.
Watching your child go through cancer treatment is one of the toughest challenges you can face as a parent. The prospect of repeating it is so frightening most families can’t let themselves think about it.
Breakthroughs we are making with drugs like PR-104 convince me that our work will one day find better treatments for the different types of leukaemia for children like Ruby.
Ruby’s future is still uncertain but her family haven’t given up hope. Together, they are making the most of every day with their brave little girl, who loves sparkles, laughing and playing with her big brother. She smiles a lot, even when she’s feeling terrible. Her mother Emma calls her “my inspiration”.