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 bone marrow transplant: A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due… . It is auspicious for us that she was admitted during Bone Marrow Failure Bone Marrow Failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… Awareness Week.
Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA) pure red cell aplasia (PRCA): A condition that occurs when the bone marrow stem cells do not make red blood cells. Red blood cell counts are low. White blood cell and platelet counts are normal. . Her bone marrow bone marrow: The soft, spongy tissue inside most bones. Blood cells are formed in the 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 blood transfusion: A procedure in which whole blood or one of its components is given to a person through an intravenous (IV) line into the bloodstream. A red blood cell transfusion or a platelet transfuson can help some patients with low blood counts. . 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 chemotherapy: (kee-moe-THER-uh-pee) The use of medicines that kill cells (cytotoxic agents). People with high-risk or intermediate-2 risk myelodysplastic syndrome (MDS) may be given chemotherapy to kill bone marrow cells that have an abnormal size, shape, or look. Chemotherapy hurts healthy cells along with… , 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.