Five years ago, on the 28th of January, we stood as a family in a stuffy hospital room. We crammed around my sister who sat up in bed, after a day of intense testing, ready to eat some lasagna.
The air in the room was humid. But heavier was the news that was about to come, and jolted us from post-Australia day celebrations.
“Samantha, you have Acute Lymphoblastic Leukaemia. If you don’t start treatment immediately you have three months to live. You will never have children.”
The words punctured us, and hung about in the room. Immediately, she started treatment- chemotherapy. Immediately, the doctors began the search for a bone marrow transplant. If chemo didn’t work, she would need a transplant to survive.
Thirty-three per cent of bone marrow transplants are sibling-related. My brother and I were not a match.
Six months on, my sister had lost her hair, her skin had become sallow, her eyes were tired, her eyebrows were gone. Six months on, after tests, MRIs and lumber-punctures, and blood transfusions, and chemotherapy, an MDR said that she was in the High Risk Category, which meant the risk of relapse was greater. The need for a donor became urgent.
In Australia, eight people every day are diagnosed with Leukaemia or a similar blood-related illness. Of those people, 67 per cent of them who require a bone marrow transplant will need to look on the Australian, or global registry.
The waiting seemed endless. Yet on the 3rd of September, just days before my birthday, my sister received a gift from a stranger. A tiny packet of blood was sent from the US. It was her bone marrow transplant. It was to be given as a transfusion.
This older Caucasian man, who was Sam’s match, sent his blood with a card. He said that his wife’s friend had been diagnosed with Leukaemia years ago. He and his friends decided to go on the registry. He was delighted to be a match.
That man saved my sister’s life.
We were among the lucky ones. Of the donors on the worldwide registry, 85 per cent are Caucasian. Sam’s match took eight months to find, and it felt like a lifetime. It easily could have cost us that.
One in 1000 donors on the registry will be a match for the patient needing a transplant. Fifteen per cent of people on the registry are from non-European or mixed ethnic backgrounds, and the search for a match for them is even direr. As the Leukaemia Foundation explains, “Because a person’s tissue type is directly related to his or her ethnic origin, Australia needs donors who reflect many different communities. Without this it becomes difficult to find matched donors of non-European or mixed ethnic backgrounds.”