When Karen Crawley took her twenty-month-old son, Remy, to a doctor after noticing he was sitting in a funny way, she expected to be told he had scoliosis.

It was the middle of 2021 and Brisbane was in the midst of Covid restrictions.

But Remy didn’t have scoliosis, he had a rare soft-tissue cell tumour, called Rhabdomyosarcoma, and so began the terrifying journey of life with a child with cancer. Little Remy underwent numerous tests, consultations with several medical specialists, fourteen rounds of chemotherapy and a four-hour surgery to remove the tumour.

Since then, he’s had multiple, regular follow-up hospital appointments and scans, which are ongoing.  Thankfully, Remy’s check-ups to date have all been clear though the emotional effects of the diagnosis and treatment on him and his family continue to reverberate.

Support from the Red Kite Kids Cancer Charity came in the first week of Remy’s diagnosis, when a social worker met with Karen and provided resources and practical advice for negotiating their hospital stay. During Remy’s time in hospital, Red Kite also helped Karen and her husband financially with a small cash payment, after both had periods of not be able to work, and the charity provided a vital link to other families who also had a child with cancer.

“They are the only support service of its kind,” says Karen. “Red Kite are doing a lot with very little.”

Karen explained that the support she received from Red Kite when Remy was very sick was significant and she could only imagine how much harder their experience would have been without it.  Of further help was a comprehensive 2021 service evaluation report released by Red Kite, outlining the scope and limitations of their service.

Karen speaking at the Hope Flies launch of how important Redkite had been to her.

In many ways, Remy was lucky; his cancer was contained and treatable and his future looks hopeful. However, the trauma of having a child with cancer and the need for support didn’t end when Remy finished treatment. Recovery is long and difficult. In addition to ongoing medical check-ups, time is needed for financial recovery and the emotional impact on all family members lingers. According to Karen, families who’ve been through this agree that “recovering from the recovery” is a long and exhausting process.

In recent months, Karen has again sought help from Red Kite, in the form of play therapy for Remy and emotional support for herself.

In a quirky twist to this story, Karen has been a lifelong fan of Isobelle Carmody’s books. Reading Obernewtyn as a child, Karen was hooked and eagerly awaited more books in the series.  After devouring The Farseekers she waited impatiently for Ashling to be published. Finally, after repeatedly nagging bookshops for its release, twelve-year-old Karen wrote to Isobelle. It was in a time before the internet but Karen had read in an author profile that Isobelle divided her time between Prague and a house along the Great Ocean Road. Naïvely, Karen whisked off a letter addressing it simply to: Isobelle Carmody, Great Ocean Road and, despite the 243-kilometre stretch of road, Isobelle received it and replied. Karen’s love of Isobelle’s books has continued and led naturally to her reading the Red Wind and Little Fur series to her own children.

When Karen became aware that Isobelle was raising money to support the Red Kite charity, she felt compelled to make contact again and offer her vote of thanks to Red Kite and to throw her support behind this important fundraising initiative.

By Karen Hollands

About Red Kite

Holding it together when your child’s life is in question can feel impossible.

Redkite provides the practical, emotional and financial support for families who have a child with cancer aged 18 or under, so you don’t have to face it alone.

Whether you’re a parent, a member of the extended family, or a close friend of a child aged 18 and under who has cancer, our team is here for you.

Redkite’s support is available wherever you are in Australia. It’s confidential and it’s free.