A middle-class white family without medical aid, their experience and “rescue” by an NGO, highlights the hundreds of painful and undignified child deaths at home or in understaffed and overburdened state hospitals where palliative care has yet to come of age as a vital and critically needed speciality.
“It arises in primitive nerve tissue anywhere from the coccyx to the base of the skull and is initially indolent and easily missed, with vague symptoms. Gracie would have died an agonising death had we not intervened. We tried chemo in the beginning. It holds the cancer for a bit, but it tends to break through,” she said.
Gracie’s father, Ian, a restaurant manager, said his daughter was one of 20 children in a ward, meaning the level of care was diffused. Katie described one potentially upsetting incident when a hospital porter with a metal body removal container inadvertently entered the ward looking for a child who had died in a neighbouring ward. “Gracie asked me what that thing was but I fudged it — that would never happen with home care.
Ian says Gracie’s initial diagnosis took time. “We were going away for the weekend, and she had a runny nose and was a bit ill. The GP told us it was a viral infection and gave us Panado. She then cycled between a really high fever and sleep and the doctor kept on sending us away. Eventually we’d had enough and asked for a referral to Red Cross Hospital where they did a lumbar puncture which was inconclusive.
The Philbins decided honesty was the best policy regarding Gracie and her sister, five-year-old Ella, in all decisions. Meiring and Di Burger, a Paedspal family counsellor, helped prepare Gracie’s nursery school classmates, teachers and parents for her death. Cape Town residents rallied to Gracie’s side after her terminal diagnosis, funding a trip to Disneyland and serenading her at the airport, sending her fluffy toys and superhero suits , providing meals for the family, and rides in a fire-engine and helicopter.
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