I
HOLD up my phone. “Say, Elsa,” I say. “Elsa,” she says. Click. I take a photo and share it on Instagram. The photo is of my then seven-year-old daughter Rachel. She has big blue eyes, snow-white skin, scraggly blonde hair and just a hint of a smile. A dad sharing a photo of his daughter on social media is hardly remarkable. But this wasn’t just a photo of a daughter. This was the story of a journey.
The journey started a year before, in February 2015, with a phone call followed by an actual journey, a white-knuckle trip through Cape Town. I was with Jean, my wife, who had been speaking to Rachel’s paediatrician on the phone. I hadn’t been paying attention until I heard Jean say: “Oncologist?” Nothing grabs you by the scruff of the neck like the word “oncologist”.
Our GP had referred Rachel to a paediatrician because Rachel had a heart murmur. After initial tests the paediatrician consulted with an oncologist at the Red Cross Children’s Hospital, who suggested more tests ASAP. As we raced through the city to fetch Rachel to take her for these tests, I remember thinking that it seemed like such a normal day, with normal people going about their normal lives — yet our lives were being turned inside out.
A bone marrow biopsy revealed that Rachel has a rare condition called Pure Red Cell Aplasia — basically her marrow is on strike and doesn’t make red blood cells, which carry oxygen throughout the body. When her blood levels dip she goes snow white, loses her appetite, stops sleeping, becomes lethargic and is in danger of going into heart failure.
The “Say Elsa” photo was taken at the Red Cross Children’s Hospital while Rachel was waiting to have blood transfusion number 14. The photo was my first social media announcement about her lifethreatening condition. Apart from my immediate family and some good friends, I hadn’t told anyone. I was in denial. I felt that if I talked about it then it would be true. Of course it was true. My not talking about it didn’t make it less so.
A week later I shared a photo of Rachel at a picnic in Kuils River hosted by Rare Diseases South Africa, which, as one of the moms described it, is a shitty club to be a member of but has the most wonderful people. Then I shared a photo of Rachel wrapped in a poncho, schlurping down on a long straw of sherbet while having transfusion number 20-something.
I shared a photo of Rachel in hospital with her trusted teddy Fuzzbot. I shared post-transfusion photos, after she’s been given what her doctor calls “a can of the best”. Cycling, playing on swings, engaging in epic Princess Rap Battles and just being the child she deserves to be. The photos tell a story of Rachel’s quirkiness, resilience and bravery. I’m sure they sometimes capture my own fear but I hope they always reveal my pride in my remarkable daughter.
Supporters from all over the world — including a Princess Rap Battle superstar — monitor Rachel’s progress on our Facebook page: Rachel’s Circle of Love. They make us realise we’re not walking this journey alone. People we’ve never met are cheering us on from the sidelines
In March, Rachel had a bone marrow transplant. On the morning of the procedure I took a photo of her. Someone had written on the wall behind her: “Never Give Up — Don’t Stop Believing!” Rachel grins and gives the camera a big fat wink as if to say, “Don’t panic, dad. I’ve got this!” LS
— Jonathan Ancer is the author of ‘Spy: Uncovering Craig Williamson’ (Jacana)