She made headlines last year when Melbourne surgeons used a robot to remove a tumour from her head, and seven-year-old Freyja Christiansen is still fighting the aggressive form of rare cancer that first appeared three years ago.
- Freyja Christiansen requires palliative care, a specialised medical care for people living with a serious illness
- The seven-year-old had life-saving surgery last year but is still fighting the aggressive cancer
- This week, Labor committed to an inpatient palliative care ward in Canberra for adults with cancer, but not for children
The Canberra girl’s mother, Lizzie Christiansen Young, was initially told her daughter’s clear-cell sarcoma was inoperable and incurable, but the mother of three chose not to give up in her search for treatments.
But Freyja’s health remains fragile, and she requires palliative care — aimed at giving her the best quality of life possible — in addition to her cancer treatment.
Ms Christiansen said the recent funding commitment towards adult palliative care by federal Labor was disappointing in that it did not make a similar commitment for children with cancer.
A childhood spent in hospitals
Freyja’s life-saving surgery, which used a robot entering through her mouth to remove the rare parapharyngeal clear-cell sarcoma, was a positive step forward in her treatment.
But while there have been successes, the cancer is aggressive, and other treatments have been necessary.
In October 2018, Freyja began another round of immunotherapy treatment in a bid to reduce the cancer cells that surgery had not managed to completely eradicate.
On a blog maintained as a way to encourage fundraising for Freyja’s care, Ms Christiansen said her daughter smiled and made jokes despite suffering pain and nausea.
“Freyja has been vomiting and spiking temperatures all night,” she wrote.
“Thankfully we were still in Melbourne and had meds [sic] to get things under control.
“Of course, Freyja made jokes all the way through.”
The reality of cancer treatment for Frejya was made more difficult by their trips interstate to seek treatment, her mother said.
“Why should children be ripped away from their pets, friends, family, school, community, teachers for things that adults can get by popping in down the road?” Ms Christiansen said.
“Or indeed if a child has come back and needs that palliative support there is one nurse, one paediatric nurse, for the whole of the ACT.”
Palliative cancer ward central to Labor funding commitment
Labor this week committed $88 million in election spending on health for the ACT, $20 million more than the Coalition’s health budget promise, introducing plans for an inpatient palliative care ward for adults at the Canberra Hospital.
But in their package, and in commitments made by the Coalition, a similar centre for children affected by cancer remains elusive.
The election spending promise also allocated funds towards a new outpatient clinic at Calvary Hospital, and another $4 million will go towards the Queen Elizabeth II centre for women experiencing postnatal difficulties.
And opposition leader Bill Shorten said further funds would go towards the regional hospital at Moruya to introduce a radiation treatment centre, the first of 13 for regional hospitals.
ACT Health Minister Meegan Fitzharris said the pledge — predicated on an election win this May — would be a significant boost for the territory.
“[It] will mean thousands more patients can get access to outpatient appointments and hundreds more can more quickly get onto elective surgery waitlists,” she said.
She said the promise for an inpatient palliative cancer ward came off the back of a recommendation from a Legislative Assembly inquiry, later taken on by federal Labor.
Children’s cancer care ‘critical’, mother says
Ms Christiansen said the commitment was not enough.
She said she believed a dedicated centre for children to receive palliative and respite care in their home town of Canberra was “critical”.
“All of the focus is on roads and light rail which we didn’t really need — that wasn’t critical to us — what is critical is our children and healthcare,” she said.
She said she was disappointed by the commitments from federal Labor and the Coalition.
“There’s nothing — once again children are forgotten in Canberra,” she said.
“It’s quite awful really, there’s no real service for chronically ill children or those returning to effectively die with their families.”
In New South Wales, Bear Cottage serves as a palliative treatment centre for children, a model Ms Christiansen she would like to see copied in the ACT.
“I think it’s a bit unfair that there are already respite service for adults in Canberra — there are already oncology services for adults in Canberra,” she said.
Ms Fitzharris said there were some options for paediatric palliative care in Canberra and that they were examining its future in the Territory.
“There is a capacity at Clare Holland House to treat paediatric patients,” she said.
“And we’ll continue to develop our model for paediatric palliative care.”
Topics: health, cancer, diseases-and-disorders, health-policy, australia, act, canberra-2600
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