
At 14:24 on Monday, 5 December 2022, my daughter Rachel walked up to a brass bell at the Rondebosch Medical Centre. She gripped the rope attached to the bell and swung it. The bell chimed. I swallowed the lump in my throat.
A few minutes earlier, her doctor, paediatric oncologist and haematologist (and musician and all-round hero) Marc Hendricks, opened a government-brown medical file, bulging with notes, and wrote two little letters: “D/C”, the medical abbreviation for “discharge”.
These two little letters signalled the end of a seven-year-and-eight-month long medical journey. It’s tradition for healed children to ring the bell when they walk out of the doctor’s rooms for the final time.
Dr Marc – as his young patients and their parents fondly call him – opened Rachel’s file on 9 April 2015 in a small office across the road at the Red Cross War Memorial Children’s Hospital.
Rachel, who was then six, had landed up at the Red Cross because something had been terribly wrong for a long time, but no one could work out what it was. She was lethargic and listless. Her skin was translucent, her lips were blue and her heart beat like a machine gun in her chest. She didn’t eat and didn’t sleep.
Our GP sent her to a paediatrician who, after doing a series of tests, told us that she needed highly specialised medical expertise. Which is how we – my wife Jean and I – ended up in Dr Marc’s office at G1, the Red Cross’s oncology and haematology unit, that day.
I remember sitting in that office with the walls closing in on me. I remember struggling to breathe. I remember wanting to be anywhere else.
Dr Marc could sense my anxiety. “You’re in good hands,” he reassured me.
A team of Red Cross doctors were looking after Rachel. “You don’t need to phone, you don’t need an appointment, if something is wrong just bring her – don’t wait,” he told us.
“There will always be someone here to see Rachel when she comes. You’ve got a golden ticket to the Red Cross.”
Rachel and Dr Marc
As a child, I was desperate for a golden ticket – but the one I longed for would give me unrestricted access to a factory with rivers of melted chocolate, candyfloss clouds and oompa loompas; not a medical facility.
I soon discovered that Dr Marc’s golden ticket was much more valuable than Willy Wonka’s. Here, some of the best medical brains in the world puzzled over Rachel’s rare illness.
These doctors are not only highly skilled, they also have huge compassion. Each visit to Dr Marc would be carefully recorded and placed in Rachel’s medical file. Her haemoglobin levels, the blood transfusions, the results of the biopsies and all the different tests her fragile body endured.
Rachel was eventually diagnosed with a super rare bone marrow failure condition called pure red cell aplasia (PRCA) – she’s the only patient with PRCA that has crossed Dr Marc’s stethoscope.
The words pure red cell aplasia seemed harmless, but when I typed them into Google I made the horrific discovery that the life expectancy for a child diagnosed with it was 10 years.
Dr Marc explained that Rachel’s bone marrow had gone on strike and wasn’t making red blood cells. The year flew by in a whirl of doctor’s appointments, hospital visits, biopsies, blood tests, emergency transfusions, and morbid Google search binges.
In one Google session, I discovered an obscure academic research paper that found that some cows in India who ate bracken fern had PRCA. We have bracken fern in our garden. I put two and two together and reported my findings to Dr Marc, who promptly banned me from Google.
Whenever her blood levels dropped to dangerously low levels we would rush her to the Red Cross for a blood transfusion or, as Dr Marc referred to it, “a can of the best”.
After a transfusion Rachel was full of beans. It was like a switch had been flipped – she suddenly became alive, jumping on the trampoline, riding her bicycle and defending her title in the world monkey bar championships; she became the child she deserves to be. But blood transfusions carry their own danger and the intervals between transfusions were becoming shorter.
Rachel in hospital before her transplant
In December 2015 Dr Marc told us that Rachel had become transfusion dependent and she needed a bone marrow transplant. This, he explained, would be like rebooting her bone marrow, although it was associated with significant risk.
He warned us that not all the children who receive transplants come back – but it was her only hope.
The South African Bone Marrow Registry (SABMR) embarked on a search for a donor. The odds of finding a donor are one in 100 000 and, in 2016, there were only 70 000 people on the SABMR’s list of donors.
After a year-long search, scouring international databases, Terry Schlaphoff, SABMR’s then deputy director, discovered a 10/10 match; a young woman living in Poland.
Magda Lewandowska, a stranger 14 000km from Cape Town, gave Rachel the gift of life. On 14 March 2017, Rachel had her life-saving transplant. After months of isolation and a wonky start that saw her admitted to the Red Cross several times, her new bone marrow eventually kicked in.
Since then, we’ve been making trips to Dr Marc. However, unlike the intervals between transfusions in 2015 and 2016 which became shorter and shorter, the intervals between Dr Marc’s check-ups were getting further and further apart as her new and improved Magda-infused bone marrow restored colour to her cheeks and turned her lips strawberry red.
Dr Marc reads a card from Rachel.
Last year, Dr Marc said he wanted to see Rachel one more time and if there’s colour in her cheeks, he said, she would ring the bell.
On Monday, there was colour in Rachel’s cheeks. “Right,” Dr Marc told her as he wrote the letters “D/C” in her file, “now you can do whatever you want … except smoke.”
Rachel shook her head. “I won’t smoke, but what I want to do is get a belly button ring.”
“I’m staying out of that,” said Dr Marc. “That’s between you and your parents.” (Add diplomat to Dr Marc’s impressive list of accomplishments.)
From a belly button ring to a bell ring.
John Donne’s famous line, “Ask not for whom the bell tolls; it tolls for thee,” means that sooner or later, death comes for us. That’s true. It’s also a reminder that we are all connected to each other, and we should feel loss at every death, because it has taken something away from humanity.
When Rachel rang the bell I thought of the children we met who never got to ring the bell. During Rachel’s journey we met many children with life-threatening conditions and rare diseases, who faced them with courage and humour.
Not all the stories had successful outcomes or happily-ever-after endings. Many of the children being treated at the Red Cross for cancer and blood diseases do not survive.
Rachel rang the bell for them. She also rang it for all her guardian angels who walked with us on this medical journey: the remarkable Dr Marc, Prof Alan Davidson, Sister Brown and the nurses and lab technicians at the Red Cross; Prof Novitzky, Dr Madurai and Sister Sindi at Groote Schuur Hospital’s transplant unit; Terry and her colleagues at the SABMR; and Rachel’s genetic twin, Magda.
Magda gave of herself – literally – to save our daughter’s life.
And, of course, Rachel rang the bell for herself.