Parents Stephanie and Duane were like any other young family with a 4 week old baby and a toddler – Busy (with a capital B!) So when their 22 month old Saskia developed a fever just before Christmas 2017 they didn’t think much of it...

Saskia was her usually happy ‘toddlerish’ self – discovering the joys of Christmas and adjusting to having a new baby brother in her life. But when the fever persisted Stephanie and Duane knew something wasn’t right and visited their local emergency room.

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Saskia was admitted on the suspicion of an ear infection (or possibly a UTI) and was treated with various antibiotics and discharged 5 days later.

However Saskia’s fever continued and she was grew increasingly weak and lethargic. With persistent high temperatures she was admitted to the Sydney Children’s Hospital early in the new year where more investigative testing was done.

The diagnosis

Three days later her parents received the devastating diagnosis of Stage 4 High Risk Neuroblastoma. Scans showed she had with 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 3 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.

Mum, Stephanie

Giving it everything they can

Saskia has undergone an intensive and gruelling 12 months (of an expected 15 month) treatment protocol. So far, this has included 8 rounds of rapid chemotherapy, 2 surgeries, a stem cell transplant (requiring 6 weeks hospital isolation), 14 doses of radiotherapy under general anaesthetic and 6 rounds of immunotherapy. As her oncologist commented: "You throw everything you can to treat neuroblastoma”.

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 a new baby.

Unlimited resilience, but no guarantees

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.

We have a new appreciation of the spirit of our daughter, and all small children with cancer, particularly their resilience and ability to approach each day anew. There hasn’t been a major scientific breakthrough for Neuroblastoma for years. We are grateful for the decades of research done prior to Saskia’s diagnosis but more must be done to improve survival rates and reduce toxic side effects. We are proud to share Saskia’s story if it means more funds can be raised.

Father, Duane

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