Just before Christmas in 2017, Stephanie and Duane took their then 22-month-old daughter Saskia to hospital with a high fever, which continued after she was discharged five days later. Stephanie shares their story,
She was admitted to the Sydney Children’s Hospital early in the new year and after investigative testing was done, the family received the devastating diagnosis of Stage 4 high-risk neuroblastoma.
Scans showed she had a 6 by 3 cm tumor on her right adrenal gland and the cancer had already metastasised in her pelvis, skull and jaw. In a short three weeks Saskia had gone from a happy healthy toddler full of energy and life to one who was gravely ill, in pain and unable to walk or eat.
In a sense there was some relief that they finally had worked out why she was unwell, but then it moved quickly to complete despair and sadness of how our lives would never be the same again.
Saskia endured an intensive and gruelling 12 months (of an expected 15 month) treatment protocol, including eight rounds of rapid chemotherapy, two surgeries, a stem cell transplant (requiring six weeks hospital isolation), 14 doses of radiotherapy under general anaesthetic, and six rounds of immunotherapy.
The toll on Saskia and the family has been physically and emotionally intense – more than 140 nights in hospital in 2018 and many short- and long-term side effects from the treatment.
Saskia suffered painful veno-occlusive disease as a result of her liver being ‘clogged’ up from toxic chemotherapy chemicals, mucositis, extreme nausea and diarrhoea.
The intensity of the treatment schedule meant that neither parent could work for the first five months as they juggled both caring for Saskia and her new baby brother.
Neuroblastoma is a particularly hard cancer to treat and with a very high relapse rate.
Sadly just 6 weeks after finishing front line treatment Saskia relapsed. She’s been enrolled in a Stage 1 clinical drug trial and undergone many more rounds of chemotherapy.
Although she is responding well there is still a very long and scary treatment road ahead.
