They say, all you need is love. But really, all you need is blood.
Saving a life requires a personal gift. A heroic act.
There are different types of medical volunteerism. Donation of blood, blood products and organs. To treat blood loss, cancer and organ failure. Specifically, there are cancers of white cells. Leukemia. Lymphoma.
You may have heard of the story of Emily Sun. Good. Because Emily needs stem cells for the chance of a cure. A biological stem cell match, however, has not yet been found. A recent story about her life appeared on the Weekend Sunrise television program.
Emily is thirty-six years old. She is an Australian of Chinese descent and she is fighting a battle with Non-Hodgkin’s Lymphoma. Over the last three years Emily has relapsed twice and now is in a tentative remission. Her health is in a delicate state of balance. She is waiting for the next set of test results. Emily has gone through the gauntlet of chemotherapy, radiotherapy to her brain, immunotherapy and an autologous transplant of her own stem cells.
But it is not just a white cell problem. It is also a racial one too. There is statistically less chance of a matched stem cell donor for culturally diverse citizens, of non-Caucasian background, the world over. Asians need to represent.
Emily is a vibrant young woman, with a husband, Julian, and five year old son Luke. She is also a writer.
Emily was published in Alice Pung’s anthology Growing Up Asian in Australia with her fictitious short story, ‘These are the photographs we take’. Now Emily writes on her blog and one of her dreams is to write a book. Done with fiction, Emily believes that there are lesson to be learnt from life, non-fiction.
She writes of friendship, new and old, the life saving grace of the Internet as a medium for connection, her joy in little things and her pain at big ones. She bravely details her midnight phone calls to the oncology nurse help-line. Her anguish and despair. She chronicles her PET scans and biopsies, her meetings with surgeons and the uncertainty of the hospital experience. She reflects on dying.
Most importantly, though, she dreams of her son Luke. She has hope. Emily would endure the treatment and pain, all over again, for a chance to see her son grow up to be a man. To see the person he becomes, to meet the people who he will love and who will love him. Luke loves the planets. The sun, stars and moon. So, Emily explains death to her son as flying to Pluto, and never coming back. She writes of the mundane and the truly extraordinary.
‘What I found interesting about my experiences in hospital is that my Asian doctors thought I was crazy bat shit with this and said it must be because I’m Asian I’m doing this even when sick. The doctor who was trying to make a joke about me being a super achieving Asian, even when sick, was Singaporean.
No, I’m doing it because I don’t want to fucking die and it gives me something to focus on other than the reality of my situation.
Another thing that kept me busy in hospital was trying to get more Asian food on the menu. I had the hospital get me congee. Eating well is so important. Sometimes I would put meals I wanted to eat that were off the menu and it would depend on who was in the kitchen. I figured out there was a Chinese guy down there. One okay whitey chef and one clueless one – the one who gave me oatmeal porridge with fish. Good to remember the funny bits. I’m still in survival mode. I think I used to do stuff, but for three years it’s been survival mode.’
Her story has touched the hearts of many and there is immense support for Emily.
The promotional short film ‘Zero to Hero’ has just been released by director Corrie Chen. It is sensational. I asked Corrie her motivation for volunteering her time.
‘I was shocked to hear the stats. Donation rates are much lower among Asian people than many other ethnic groups. Someone who is Caucasian has an 80% chance of finding a donor match, whereas Emily has a less than 30% chance. For me, it was a chance to raise awareness amongst the Asian community not just for Emily, but also to set the wheels in motion as a statistic we can change for future generations.
From the start, comedian Lawrence Leung was quite keen on doing something with a sense of humour that would get a lot of people watching, and embedded in that is the great message that we could all do something to help. We settled on Kung Fu, because Asians love Kung Fu and it was able to carry the message of “anyone could be a hero”.
We were also lucky enough to get the help of Maria Tran and Andy Minh Trieu who are very capable martial arts performer/actors. I really wanted to capture the humour and tone of Kung Fu films from the 60’s/70’s, and the low fi wonders of Power Rangers as well!
I hope that this film inspires people to go out there and get their blood tested to see if they are a match and possibly save a stranger’s life. You never know how you are capable of changing or saving someone’s life. I think it’s important for the Asian community to start this conversation and hopefully within our generation we’ll see a change in that shocking statistic.’
So, could you save Emily’s life? You may be an eligible donor.
The Australian Bone Marrow Donor Registry states that bone marrow registration requires blood, taken through a needle in the arm. They would ideally take up to 470ml, as this would constitute a blood donation as well. Your bone marrow tissue type would be determined and the details recorded on the registry. There is a 1 in 1000 chance, per year, of being identified as a potential match. If so, more blood is required to harvest stem cells. Potential donors are retired form the registry on their 60th birthday.
The recruitment and education of potential bone marrow donors is essential. New members worldwide are needed to allow sufficient genetic diversity in the donor pool to meet patient needs.
Only 1 in 3 donors are found from a patient’s family, with 2 out of 3 relying on bone marrow from international registries. The European registries have been established over a longer period of time. It is time now to educate the Asian population, wherever they may be, that their generosity is needed too.
Key beliefs that act as barriers to donation include viewing it as an invasion of the body, lacking normalizing support from others, anticipating pain or side effects from giving blood and lack of knowledge about how to register. Negative beliefs stem from anxiety around physiological effects, of fainting, dizziness, nausea, pain, and inconvenience. The most consistent factor associated with opting out of the registry for all race ethnic groups is ambivalence about donation, worries and doubts, feeling unsure about donation and wishing someone else will donate in one’s place.
We need to produce a shift to intrinsic motivation, to want to help altruistically, by being well informed and better educated about all aspects of donation. A public act of collaborating with other people who donate would validate the experience. Fight the apathy.
Successful donors have described their experience as being both life changing and life saving. The youngest stem cell donor in the world, Victoria Rathmill, aged 17, said:
‘Friends and family were very supportive, and very proud of me. I would do it again, because it’s saving someone’s life and it’s not that difficult.’
In a world that is disconnected, this is as real as it gets. Real people with real problems. And there is something you can do to fix it. Is donation right for you? Through informed consent, it is your own decision to think through the pros and cons, the risks and benefits. It is your own blood, sweat and tears, after all. So the question of stem cell donation is a personal one.
If the answer is in your blood, will you donate?