Whilst we have been flooding our social media with images and statistics about Aurora, a lot of people have asked questions about stem cell or bone marrow donation, how it works and whether or not they could be a match, so I gave written a piece with all the information I know myself to help everybody.
“Blood cancers are life-threatening partly because they stop a person’s immune system working properly. When someone’s immune system is badly damaged, they are at risk of dying from an infection their body could normally fight off. For many people with blood cancer, a transplant is their last chance of life”
Due to the severity of the cancer now spreading through Aurora’s body, oncology specialists have concluded that a transplant is her only hope of a second chance at life. A transplant ultimately replaces damaged cells with healthy ones and is used to treat a number of conditions of the blood including lymphoma, and leukaemia. When the bone marrow is no longer able to produce healthy blood cells for the body, and other treatments have been unsuccessful a transplant is proposed.
The Process:
The idea is that healthy stem cells are taken from one person and given to another. This process is called an allogeneic transplant.
After tests and examinations to make sure the patient is fit enough for transplant, stem cells are harvested from the donor using one of two methods, but we will get to that later. The patient’s body is conditioned to prepare it for transplant which involves intensive chemotherapy or radiation. When the body is ready, the healthy stem cells are received by the patient and then the long road to recovery begins. This requires staying in hospital for a prolonged period of time until the transplant starts to take effect, but it can take months or years to fully recover.
Risks of a transplant:
As with any treatment, transplant comes with risks and side effects, but when it’s your last hope, the rewards outweigh the risks. As well as all of the side effects associated with chemotherapy, transplant brings with it a whole new world of recovery. There are times when Graft Vs Host Disease occurs, when the transplanted cells start attacking the other cells in the body or the number of blood cells can be reduced which can lead to higher risk of infection, anaemia, bruising and bleeding.
Finding a match:
To improve the chances of the transplant being successful, and not being rejected by the body, the donated stem cells need to carry a special genetic marker that’s identical or very similar to Aurora’s.
The best chance of a match is typically from a sibling, or sometimes another close family member, but due to Aurora only having “half” siblings, the chances are too slim to warrant testing. If neither myself or her dad are a match, a search of the British Bone Marrow Registry will be carried out to find the closest match possible.
Most people will eventually find a donor in the registry, although due to our ethnic background, Aurora is at a significant disadvantage.
For a transplant to take place successfully, the donors tissue type will have to match with Aurora’s Matching is based on a protein found on your cells called a human leukocyte antigen (HLA) tissue type.
This is made up of five genes, with each being comprised of two different versions making 10 in total. You inherit one version from your mother’s genes and one from your father’s genes, which is why it makes it unlikely that Auroras Dad and I will be a match ourselves.
When it comes to the process of matching Aurora with a donor, if nine of these genes match up it’s called a 9/10 match. If all 10 match then we’ve got found a perfect 10/10 match. Finding the best possible match is important, because it will give her body the best possible chance of accepting the new cells, without her body believing they are foreign.
How Aurora’s ethnicity effects her chances of finding a match:
Everyone’s HLA is inherited, so if you have a mixed background it can make it more difficult to find a suitable donor. The likelihood of her tissue type being rare because of mixed ethnicity is high and therefore makes her chances of a 10/10 match slim. The likelihood is that a match would come from someone with a similar or the same racial ethnic background.
This being said, Aurora’s Guyanese background only accounts for 25% of what makes her her, and so it’s anybody’s guess as to who or where her match will come from.
If an adult donor cannot be found on the registry we have to consider other options to make transplant possible. This could mean using stem cells from cord blood transplant, or a haploidentical transplant which means using one of ours who is only a 50% match, and risking her body rejecting it.
“Out of 133,367 people who signed up to the registers in 2015, just 0.6 per cent (829) of these were of African descent, 1.9 per cent (2,501) were African Caribbean and 0.5 per cent (732) were East Asian, according to the annual review Changing the Transplant Landscape”
How you can help:
On Thursday we will be meeting again with her consultant to discuss her treatment moving forward. Before anything else, finding a donor is top on our list of priorities, but we will also be asking how we go about getting her the CAR-T CELL treatment proposed. This may potentially mean raising the funds to travel to America for her to get the care she needs, although we are hopeful that it will become available here before that time.
For now, please continue to share her story and consider signing up for the Bone Marrow Register at:
(16-30 years old) – www.anthonynolan.org
(31-60 years old) – www.DKMS.org
We have been in contact with Anthony Nolan who are going to support us in spreading awareness about the disparity of those currently signed up to the register, and those who are needed.
Thank you all for taking the time out of your days to read, comment, share, like or message about our posts. We have been inundated with messages and support and forever grateful. We will be aiming to share the story as far and wide as possible to give Aurora the best possible chance. Finding a match is only the first step in the journey and she has a long way to go, but we are with every step of the way.
Health is wealth.
From ours to yours 🎗️💕
#MarrowForAurora
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Growing Pains and Paper Planes 