Six months ago today we were in the isolation ward at Groote Schuur Hospital where we watched as stem cells from an anonymous donor were infused into our eight-year-old daughter, Rachel. We wore scrubs and masks as the doctor and nurse watched the stem cells drip into Rachel’s body.
About half an hour after the procedure started, the doctor took off his mask and gave us a thumbs-up. “That’s it,” he said. “It’s over.”
It was remarkably undramatic; even ordinary. Rachel, who had been playing on her iPad, hadn’t even noticed that a life-changing event had taken place.
The 30-minute bone marrow transplant was an injection of hope after two years of hell.
Two years earlier we had discovered that Rachel has a bone marrow failure condition called Pure Red Cell Aplasia – basically her bone marrow wasn’t making red blood cells, which meant oxygen wasn’t being transported around her body. We had become experts on the signs to look out for when her blood levels dropped. She would go so pale she looked translucent, she would lose her appetite, wouldn’t be able to sleep, become listless and lethargic, and her heart would pump so fast. If she didn’t get a transfusion she would be in danger of going into heart failure.
This is a rare disease and we were referred to a team of experts at Red Cross Children’s Hospital, which became our second home. A course of cortisone had proved unsuccessful and the only treatment available was red blood cell transfusions, which she was getting every two weeks. After a year Rachel had become transfusion dependent and her doctors told us she needed to have a bone marrow transplant – and so began a search for a donor. The experts began to crunch the data on the local bone marrow registry. We held our breath – the chances of finding a 10/10 match are one in 100 000 and there are just 70 000 people registered on the South African Bone Marrow Registry. There was one potential donor on this list but after a high-resolution test she mismatched. The search was extended to international bone marrow registries and doctors told us that the list of potential donors looked promising. However, one by one these people fell away. And then after a year’s search when we were just about to give up hope of finding a donor for Rachel – someone registered on the Germany registry. This person turned out to be a 10/10 match.
Rachel was admitted to the transplant unit in March and after a week of chemo therapy to knock out her bone marrow she received the donor’s stem cells. After being in isolation for six weeks Rachel was eventually discharged from Groote Schuur but because she had no immunity she had to be in quarantine at home. We had to worry about infections and Graft Vs Host Disease and rashes and fevers as we waited for her new bone marrow to kick-in. She took a fistful of meds each day, had weekly transfusions and almost daily painful sub-cutaneous injections and her little body was so bruised. She was also re-admitted to the Red Cross Hospital three times (for two weeks at a stretch) to fight infections. Her new bone marrow was just not getting with the programme (or as her doctor put it, it had yet to declare itself). Not only was her bone marrow not making red blood cells it wasn’t making white blood cells or platelets. Our doctors told us to prepare for a second transplant and two weeks ago we had an appointment with the professor at the transplant unit – that’s when it seems that Rachel’s new bone marrow decided to declare itself.
It’s still early days but without putting a commentator’s curse and jinxing her recovery (I’m not superstitious but still…) we think Rachel has taken a small step on the road to recovery. We know we have many more steps to travel but this first small step is a giant leap.
We have met so many amazing people on this journey and so many people – family, friends and people we’ve never met – have been so kind, thoughtful and concerned, bringing us food, helping to look after our other kids when things have got bad, sending love, writing letters to Rachel and giving her presents, and one anonymous donor gave us the gift of hope.
Tomorrow (Friday, 15 September) is Sunflower Day. It would be great if you would consider joining the registry, which you can do by visiting sunflowerfund.org.za