A Journey of Two Decades: Part One

In November 1996, I received the news no parent wants to hear: “Your son has leukaemia”.

And so began a journey of more than two decades. 

Actually, I knew it was bad the previous day when our GP rang to say that Stephen’s blood examination showed ‘blasts’ and he needed to get to hospital for a bone marrow aspirate. As a medical scientist, I knew this probably meant leukaemia. 

The next day we presented to Monash Medical Centre (MMC) for the bone marrow aspirate – a very painful procedure where bone marrow is extracted through a large needle from the top of the hip. 

We were introduced to Dr Peter Downie, a dedicated, compassionate and practical Paediatric Oncologist, who ultimately shattered our belief that this couldn’t happen to us. 

Stephen commenced a treatment protocol (Study 6) for acute lymphoblastic leukaemia (ALL) which involved 2 years of blood tests, chemotherapy, lumbar punctures and occasional bone marrow aspirates.

Shell-shocked and trying to come to terms with our little boy (then aged 8) having a life-threatening illness, John, Carly (aged 5) and I were introduced to some very supportive and helpful parents at the hospital, who also had a child being treated, or who had been treated, for cancer.

These mums and dads represented the KOALA Group (Kids Oncology and Leukaemia Action), whose main purpose was to reassure other families that they were not alone and to support the cancer service. 

KOALA organised family events, such as BBQs, Christmas parties and raffles, to raise funds for projects such as the salary of a Paediatric Oncology Fellow. 

In 1996, paediatric oncology at the MMC was a grossly under-resourced department with Dr Downie being the sole Paediatric Oncologist. Consultations were conducted in the general clinic of the hospital and the children and their parents shared the waiting area with the Infectious Diseases clinic. 

During Stephen’s 2 years of hospital visits and chemotherapy, I met many other parents. I found the friendship and support of these parents invaluable and naturally fell into the role of reassuring and supporting new parents whose child had received the dreadful diagnosis of cancer. 

More than one of the beautiful young patients we met lost their battle with cancer during this time; but never once did I believe that this outcome could befall Stephen.

Read 'Part Two -  Advocating'

Stephen with mum, Andrea