Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her bone marrow transplant. It is auspicious for us that she was admitted during Bone Marrow Failure Awareness Week.
Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA). Her bone marrow has gone on strike and she’s not making red blood cells. What caused it remains a mystery, which has stumped doctors from Rondebosch, South Africa to Boston, from Atlanta to Oxford, England.
We were referred to the Red Cross Children’s Hospital, and whenever Rachel’s blood levels dropped dangerously low she was given a blood transfusion. The intervals between transfusions became shorter and eventually she became transfusion dependent. That’s when doctors felt she needed a transplant and a search for a donor was launched.
The chance of finding a match is just one in 100,000, and when none of the 70,000 people on the South African Bone Marrow Registry proved to be a match, the search was extended to international databases. In December someone joined the German registry. A month later we were told that this person was a 10/10 match. For us, this was a miracle.
Rachel has started chemotherapy, and the transplant takes place in about 10 days. She will have no immunity, and if her body doesn’t reject the new marrow and there are no infections, she will be in the isolation ward for four to six weeks, followed by remaining in isolation at home for another four to six months. She will be very vulnerable while her new immune system is being “re-educated”. We know her road to recovery will be painful and slow. People who have gone through transplants have told us that it took them about a year to stabilize.
In the meantime, Rachel has settled into the hospital ward at Groote Schuur. We arrived with a lot of luggage – the nurses and doctors said they’d never seen anything like it. She has her teddy Fuzzbot, an iPad (a gift from very generous friends), an ice-crushing blender to make slushies (the meds will make her throat dry), books, crayons, more presents and so many snacks she could open a stand.
We have encountered so much kindness from so many concerned people – family, friends, even from people we’ve never met. Rachel’s school has even arranged for her to Skype into the classroom when she's feeling up to it.
Although this journey is daunting, we know we are not taking it alone. People often ask if there is anything they can do, and there is: If you’re not in the bone marrow registry (and you meet the requirements), consider joining. Visit www.sunflowerfund.org.za) and, if you don’t meet the requirements, encourage others to consider joining. And sign the petition that’s circulating to urge the government to subsidize testing so more people can join the registry. There are many other patients seeking donors, and they also deserve hope.