The Mail & Guardian spoke to one family who lost their four-year-old daughter to aggressive and agonisingly painful neuroblastoma cancer three years ago.
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.
The Philbins, who live in Pinelands, Cape Town, are only now starting to come to terms with the death of Gracie Rae, who was initially treated at the Red Cross War Memorial Children’s Hospital in Rondebosch before being moved home for specialist care by the NGO, Paedspal. She died a relatively peaceful death there, just 14 months after being diagnosed.
Paediatrician Dr Michelle Meiring, the founder and director of Paedspal, who arranged voluntary nursing care and an opioid drip at home for Gracie, visiting the family twice daily, says neuroblastoma is a horrible cancer.
“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. Chemo was tried in the beginning. It holds the cancer for a bit, but it tends to break through,” she said.
“With Gracie it broke through in the brain and metastasized to the abdomen — she was riddled. When they survive this long, they get resistant to the pain-relieving medication and doses have to go up and up. We were using bucket-loads of medication in the end. “Luckily I lived close by so I could operate like the old-fashioned GP and do regular home visits.”
Initially admitted to Red Cross Hospital on a drip for days at a time, Gracie was desperate to return home, says her mother, accounts administrator Katie: “It was so difficult with both of us working. It was actually chaotic.”
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 illustrated a claim by Meiring that euthanasia would be far less contentious, and in less demand, if proper palliative care existed, saying that, in hindsight, they would have “seriously considered” ending Gracie’s life earlier, had she not benefitted from expert pain control.
“Unless you’ve gone on a close journey with a family, you don’t realise the gaps in service provision. Many surgeons and oncologists think that palliative care is easy, just a bit of morphine and some counselling, but it’s so much more,” says Meiring.
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. But then, true as God, the first doctor who really examined her felt a mass in her abdomen and we went for further testing.”
Katie said they were given three options upon diagnosis. “She had a couple of weeks if we did nothing. The second option was a small bit of chemo to see if we could extend her life for a year. The third was to go all out, go to the USA and try experimental stuff, but she could still die from complications of the chemo mix.
“Initially l wanted to do nothing … it was, like, just leave my baby. Ian thought we should try the life extension option. But I gave up my job when she was diagnosed so we could give her the best life we could. We had a whole team of doctors.”
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.
Paedspal also provided pro-bono psychotherapy and art therapy for Ella for a year after her sister died. Her trauma was still evident when the M&G interviewed her parents and Meiring three years later; she avoided all eye-contact and conversation with Meiring.
“I think I still remind her too much of those final days when I was there all the time,” says Meiring.
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 (her favourite besides animals), providing meals for the family, and rides in a fire-engine and helicopter.
Ian, his eyes glistening, says: “It was a very humbling experience. People you’ve never met before, giving us stuff. They never excluded Ella — Gracie was dying but she was the one living with it.”
Gracie’s parents and Meiring described her as “extremely courageous, an old soul, wise beyond her years and always asking after others.
“She had a great sense of humour, hiding her granddad’s hearing aid or his phone. She lived her last weeks intensely, and said things like “don’t worry mum, I’ll still live on in your heart”.