A Journey of Two Decades: Part Two

Once Stephen’s treatment ended, I had more time and energy. 

I joined KOALA Group as a general member, then as Secretary and then as President in 2000. I felt unprepared for the responsibilities that came with these roles, but I was assisted by some wonderful people, including Sheila Fedele, Secretary, Rob Connor, Vice President, and Tony McGinn OAM, currently Deputy Chairman of the Children's Cancer Foundation, who inspired me with his vision for KOALA as an advocacy group.

Almost 2 years after Stephen’s treatment ended (4 years after his initial diagnosis), Stephen’s routine 6-weekly blood test showed signs that the leukaemia had returned. 

Another bone marrow aspirate was ordered; this time, Stephen was allocated a time-slot in the operating theatre and the procedure was performed under general anaesthetic. 

Stephen began a course of relapse chemotherapy, which involved many more hours of chemotherapy, many more admissions for adverse side effects and major disruption to Stephen’s first year of secondary school and life in general. 

However, John, Carly and I remained optimistic about the outcome of his illness.

In 2001, KOALA started advocating for improved childhood cancer facilities and better collaboration between the two paediatric cancer services in Melbourne; informing the executive at MMC and the Victorian Government that the paediatric oncology department at MMC was seriously deficient.

Tony McGinn OAM and I were invited to join a stakeholder panel led by Dr Caroline Clark, Head of the Women’s and Children’s Group at MMC. The outcome of this group was the construction of a new Day Oncology Clinic, located close to the Pharmacy (to expedite the delivery of chemotherapy to scheduled patients), which enables current patients to undergo painful and traumatic procedures such as lumbar punctures and bone marrow aspirates under a light general anaesthetic.

The Victorian Government responded by creating the Paediatric Integrated Cancer Service and expanding resources at MMC, especially the number of oncologists. Both of these outcomes were wonderful success stories for KOALA Foundation.

In May 2002, I resigned from KOALA Foundation, because after 15 months on relapse treatment and good results of weekly blood tests, it became evident that Stephen had relapsed a second time. The only hope for a cure was now a bone marrow transplant (BMT) with a matched unrelated donor (his sister, Carly, was not compatible).

The complexity of patient management following a BMT meant that Stephen’s care was to be transferred to The Royal Children’s Hospital. As a family, we had to establish new relationships with the doctors, nurses and other staff there. To prepare for his transplant, Stephen had to stay in a special isolation room in the ward, affectionately known as the ‘Bat Cave’, and was allowed only a few visitors.

In 1998, the children’s cancer ward at the RCH was completely renovated, as a result of $23 million raised by two groups of dedicated parents from My Room and the Children's Cancer Foundation. The redevelopment included construction of the specially designed ward for patients undergoing intensive chemotherapy and BMTs, and individual patient rooms.

Stephen spent almost 3 months in the isolation room with a tag-team of John or I spending the day and evening with him while the other parent attempted to maintain a moderately normal life with Carly. We had a room at Ronald McDonald House where one or all of us slept every night during Stephen’s hospitalisation.

Although there was good evidence that the BMT was successful, and Stephen’s blood counts were rising, he began suffering terrible side effects of the chemotherapy and of the transplant (known as Graft vs Host Disease).

I remained optimistic that Stephen would recover from these effects and would be cured of cancer. 

Read 'Part Three - Legacy'