The magic of science
His daughter's life-saving bone marrow transplant proves what wonders the medical establishment is capable of, writes
A surreptitious peek into a brown hospital envelope took me to cobwebbed corners of the World Wide Web and down dark and twisty cyber rabbit holes to do “research”. Our doctor — Marc Hendricks — had urged me not to be fixated on a diagnosis, but it was too late: I was hellbent on finding a name for whatever it was that caused our daughter Rachel, who was six at the time, to become sick.
Rachel had recently learnt to cycle and loved everything about it — except the falling part. She rescued shongololos, giving them names and making sanctuaries for them, and never went anywhere without Fuzzbot — her trusted fuzzy teddy bear.
She loved butterflies and fairy princesses and one of her ambitions was to take part in a princess rap battle against Snow White. She was also the Sea Point Promenade’s monkey bar world champ.
That was until some time in 2014 when she became pale and lethargic, had no energy and could hardly function, which is when we found ourselves at the Red Cross Children’s Hospital G1 unit for haematology and oncology patients.
Dr Hendricks, her primary doctor, was trying to get to the bottom of what was going on.
I’m not sure why I was so desperate to discover what her condition was. Maybe it was because I wanted to blame something or someone — maybe even myself, but perhaps it was because I felt utterly helpless and I figured if I could just find a name for it, then I could claw back some control.
As a wise philosopher once said: Named must your fear be before banish it you can.
But enough about Yoda.
One day the nurse at the hospital sent us to the blood room with Rachel’s file, which was becoming thicker and thicker. That’s when I peeked inside and saw the words “Pure red cell aplasia” scrawled next to “Diagnosis”.
My fear had a name. When I got home I punched those four innocent-looking words into the Google search engine and found that pure red cell aplasia (PRCA) “is a disorder of erythroid precursors that results in an isolated normocytic anemia”.
Or, as Dr Hendricks explained, Rachel’s bone marrow had gone on strike and wasn’t producing red blood cells.
Some more googling later and I discovered that PRCA was a very rare condition and incredibly rare in children. I also learnt that there were two types of PRCA — acquired and idiopathic. Acquired could be as a result of a virus, genetic or caused by drugs or toxins. Idiopathic, though, meant that the condition had occurred spontaneously and that the cause was unknown.
During my googling frenzy I made a horrific discovery: the life expectancy of children with “idiopathic PRCA” was 10 years.
I couldn’t breathe. I felt like I’d been whacked in the solar plexus. That night I woke up from a half slumber in blind panic.
I needed Rachel to have “acquired” PRCA, because the thought of “idiopathic PRCA” was unbearable.
Dr Hendricks and the team of specialists at the Red Cross were trying to figure out what caused Rachel’s PRCA. She had a series of blood tests and biopsies and her genes were mapped, but they ruled out the known viruses and couldn’t find a genetic link or a toxin. “Acquired” seemed less and less likely.
Dr Hendricks consulted experts at Harvard, in Atlanta and in London. The best brains in paediatric medicine puzzled over Rachel’s condition, but how and why she got PRCA remained a mystery.
That didn’t stop me from taking on the case. As Yoda said: Keyboard have Google search I therefore must.
I went on another internet search binge and discovered an obscure academic research paper that found that some cows in India that had eaten bracken fern had contracted PRCA.
Hang on! We have some bracken fern in our garden. I put two and two together and waltzed into Dr Hendricks’ office and told him my “breaking news”: bracken fern was the smoking gun.
He burst out laughing … and banned me from using Google ever again.
Now that I see how the army of Covid anti-vaxxers’ pit their “research” against the years and years of painstaking, punctilious, methodical, exacting, rigorous, meticulous, laborious scientific study that medical experts do, I cringe with embarrassment at my arrogance.
In my defence, though, I was desperate. I’m not sure what the vaccine refusers’ excuse is.
I can’t understand how anyone would choose not to get jabbed when the evidence shows how vaccines massively reduce the risk of Covid infection, hospitalisation and death.
But let’s return to 2014 when Corona was a Mexican beer and the Red Cross Children’s Hospital was our second home and Rachel survived from transfusion to transfusion (if lying in a slump is surviving).
After a transfusion, she was full of beans again. It was like a switch had been flipped — she suddenly became alive. But the intervals between transfusions became shorter and shorter. In December 2015 Dr Hendricks told us that Rachel had become transfusion dependent and she needed a bone marrow transplant (also known as a stem cell transplant). This would be like rebooting her bone marrow.
After a long year’s search, the South African Bone Marrow Registry (SABMR) eventually found a match and on March 13 2017, the night before Rachel’s transplant, my wife Jean and I wrote a letter to Rachel’s anonymous donor …
Dear X
We’re sitting here in an isolation ward at the University of Cape Town section of Groote Schuur
Hospital — a few metres away Rachel, our eight-yearold daughter, is fast asleep. She looks peaceful; not like she’s just endured a week of chemotherapy. Since she was admitted to hospital her tiny 23kg body has taken a beating.
She’s attached to all sorts of tubes, drips and monitors — most of all she hates the tube that’s been shoved down her nose and scratches her throat, but she needs it because she stopped eating on day 3. The chemo side-effects keep coming — sore, dry throat, nausea, vomiting and tummy aches. Everything tastes like metal.
Outside, a mother pushes her baby in a pram, cars whiz by and branches sway in the wind. We see the sea in the distance. It’s a sunny, pre-autumn day in Cape Town. We keep looking in the sky for airplanes making their way to Cape Town International
Airport. One of these planes will be flying from Germany and one of its passengers has a box that will not leave their sight.
That person is a professional medical courier and in that box is a package with your stem cells. They were harvested last night and are on their way to Cape Town, to this hospital, and then eventually to our isolation ward in F4. At about 3pm, your stem cells will be infused into Rachel’s body and they will find their way to her bone marrow.
Two years ago, when Rachel was six, we discovered that she has a bone marrow failure condition called pure red cell aplasia.
The best medical brains in the world still haven’t been able to tell us what caused it. What we do know is that whenever Rachel’s red blood cells dropped she needed blood transfusions to keep her alive.
Initially she was given transfusions every six weeks, then every four weeks and when the intervals between transfusions were just two weeks apart, our doctors told us she needed a bone marrow transplant.
That was at the end of 2015 — and we launched a search. We were searching for you.
But we couldn’t find you.
In December 2016, after a year of searching, it seemed that the SABMR was running out of hope that they would find a 10/10 match for Rachel. And then you joined Germany’s bone marrow registry and popped up on the international database as a potential donor for Rachel. It was impeccable timing and the best luck that you came out of nowhere and into our life.
We don’t know what motivated you to join, but words can never express how grateful we are that you did. This time high-resolution testing confirmed that you and Rachel are a 10/10 genetic match. Your DNA has given us hope.
At 3pm, when your stem cells are infused they will — magically and miraculously — reboot Rachel’s faulty bone marrow. It’s a long road to recovery. Her immune system will be suppressed for three months. It’s a fine balance between having enough immunity to fight any infections but not enough immunity to reject the new marrow.
She will be in isolation for another four months while her immune system is being re-educated. People who have been through bone marrow transplants have told us that it took about a year for them to return to their “new normal”.
But then, thanks to you, she will become the child she deserves to be — the little girl who loves riding her bicycle, visiting fairies in the forest, collecting shongololos, doing monkey bars, and practising princess rap battles with Snow White.
There’s an unspoken bond that parents will do whatever it takes to look after our children. You have allowed us to keep our promise to Rachel.
We haven’t met you yet but we hope to meet you someday. We will never be able to express how grateful we are to you, but we would like an opportunity to try.
Rachel’s parents
Since Rachel’s life-saving transplant she’s become a new child. Her transformation has been remarkable. Before the transplant she was a translucently pale, listless little girl with blue lips and a heart that beat like a machine gun as it tried to pump oxygen around her tiny body.
Today she’s a healthy 12-year-old whose eyes twinkle with mischief, who walks with a bounce and who is full of beans and jokes.
At her last doctor’s appointment earlier this year, Dr Hendricks took one look at Rachel’s cherry-red lips and rosy cheeks and said there was no need for a blood test. He could tell her blood levels were normal (I love that word).
It was the first time since we took her to the Red Cross Children’s Hospital 6-bazillion doctor appointments ago that she didn’t have a blood test.
She’s back at school and participates in sports and galas. She has besties, friends and frenemies.
Rachel is proof that thanks to the amazing advances in science, medical miracles happen, which is something worth remembering in the doom and gloom of the Covid pandemic.
Of course Rachel’s bone marrow transplant couldn’t have happened without a donor. Rachel’s genetic twin — her 10/10 DNA match who lives 14,300km away in Poland — came into our lives in the nick of time.
Last Saturday was World Bone Marrow Donor Day — a day to salute donors and to raise awareness about the impact of stem cell transplants on patients’ lives.
It’s also a day to pay tribute to the scientists and doctors, who reboot wonky bone marrows to give people like Rachel a second chance, and develop vaccines so the world can return to its old normal.
After my bracken fern felony, Jean and I had a mug inscribed with the legend, “Don’t Confuse My Medical Degree with Your Google Search” and presented it to Dr Hendricks. Someone has walked off with that mug, though. “They obviously needed it more than me,” he told us, “or they felt offended.”
A few years after the transplant we discovered the identity of Rachel’s donor — Magdalena. Last year Magdalena’s company held a bone marrow donor drive for its employees and interviewed Magdalena about her experience.
She had never thought about registering but a friend wanted to sign up and so Magdalena decided to accompany her friend to the centre. She wrote: “At the last moment, I thought that maybe it was me who was supposed to be there …” and she signed up.
I’ve read that sentence 1,000 times.
Four years later we still aren’t any closer to finding the words to express how grateful we are to Magda for giving us our little girl back, but we’ll keep trying.
In the meantime, here’s some more Yoda wisdom: SABMR join consider must please lives save!
I told him my breaking news: bracken fern was the smoking gun. He burst out laughing
At the last moment, I thought that maybe it was me who was supposed to be there
After Nelson Mandela was released from prison, Giorgio Armani reportedly offered to dress him. But for the freedom fighter to endorse an Italian designer symbolising elitism and extravagance would have been contrary to everything he had devoted his life to.
Instead, he focused on suits by his longtime tailor Yusuf Surtee, and his trademark Madiba shirt.
The story goes that Mandela was given some shirts by president Suharto of Indonesia in October 1990 and he liked them. The fabric was batik, decorative and distinctly un-Western, in natural fibres.
Surtee, whose father had made clothes for Mandela before his imprisonment, told a journalist in 1996: “He wanted to identify with his people, and the majority never wore suits.”
As a lawyer and prominent member of the ANC in the 1950s, he had worn beautiful bespoke suits in the Savile Row tradition.
He was keenly aware of the symbolism of dress and for his trial in 1962 he drew on his roots, wearing his emblematic Thembu kaross and beaded necklace. “That day, I felt myself to be the embodiment of African nationalism … the kaross
(given poignancy by being a bedspread) was a sign of contempt for the niceties of white justice. I knew well the authorities would feel threatened by my kaross as so many whites felt threatened by the true culture of Africa,” he wrote in his autobiography, Long Walk to Freedom.
The original Madiba shirt — known as the “fish shirt” — was designed by Desré Buirski Nash. In 1994, she gave a gift of a handprinted batik shirt to Mandela’s bodyguard, with a note reading: “Thank you for everything you have done and the sacrifices you have made for our beloved country.” Mandela wore the shirt the next day to the rehearsal for the opening of parliament, and a picture of him in it appeared on the front page of a local newspaper.
Sonwabile Ndamase became Mandela’s shirtmaker in the late 1990s while he was dressing Winnie Madikizela-Mandela and her daughters, who introduced him to “Tata Madiba”.
“Tata gave me the brief on how and what he would like to wear,” he said at the time. “After years of breaking stones on Robben Island, the alkaline dust had taken its toll on his health. He needed something cool to the body, easy to wear, but as he called it, ‘well-behaved’.”