15 July 2016
Nikki Braterman's husband Geoff pays tribute to her and highlights the need for more ethnic minorities to be on the stem cell registry.
'I remember the day Nikki and I met very well, 14th March 2004. It was actually a blind date and we met in a bar in Islington, North London. Friends put us both up to it.
I just recall that we hit it off straight away. We discovered that we had such a lot in common, particularly our love of music. We didn’t stop talking and given that we were both chatterboxes, it felt like we didn’t stop talking until Nikki died.
Nikki was an extraordinary human being, really one of a kind. She was very enthusiastic and generous towards other people. She gave regularly to charity through monthly donations for pretty much all of her adult life, even at times when she was strapped for cash. She always had time for other people, even when she was seriously ill. Being an avid bookworm, Nikki always had her nose in a book and has left behind a collection that would put a few public libraries to shame. She also had a great love of music and was never happier than when singing. When we met she was a member of the Philharmonic Chorus as well as managing the administration of the chamber choir she co-founded, Vox Angeli, who recently raised over £1,800 at a memorial concert for Nikki in Brighton.
Nikki was fun, witty, gregarious, and opinionated. She had a wonderfully exotic appearance too and from that and her character she never blended into the background. She was my partner, my wife and my best friend and I miss her every day.
There wasn’t one particular moment that we realised Nikki was ill, but the story started in the autumn of 2013. Nikki was becoming increasingly tired and there was no clear explanation for it. We were both going to participate in a 10km run in Brighton that November (Nikki had done the run in the previous year). However, Nikki’s fitness seemed to decline rapidly during that October, probably not long after her leukaemia actually started. One week she was happily running 7-8km, a good run at that point in training for the distance. The next week she couldn’t run 2km and the week after that it was staring to be a struggle for her to walk. By the end of November Nikki was completely exhausted and I started to suspect that it was something more serious than a bad virus she couldn’t shake off. I remember telling her, after we agreed that she would have a weekend of bed rest, that if she wasn’t substantially better then she should go to her GP. On the Monday, I had to drive Nikki to the doctor’s surgery, even though it is only at the end of our road. I remember our GP calling (I cancelled all meetings that day and worked from home) and telling me that he was referring her straight to hospital. He initially thought it was an ENT problem, but requested a whole blood count. That evening we were told that her blood counts were way down, with the exception of white blood cells (blast cells, not healthy white cells) that were high. The next day I was called by Nikki from the hospital and asked to come in. We were taken to the quiet room on the ward and given the news that Nikki had been diagnosed with acute myeloid leukaemia.
The need for more donors
When we were told that Nikki needed a blood stem cell donation for her survival, it was a devastating blow, but it wasn’t the first such shock. Initially we were told that the plan would be to treat Nikki with chemotherapy (she was in hospital Christmas 2013, having only being diagnosed in early December and still neutropenic from her first round of chemo). In January 2014 we were told that Nikki had a higher risk sub-type for her leukaemia and that a blood stem cell donation was needed. The spring of 2014 was dominated by a search for a donor. Unfortunately, neither of Nikki’s brothers were a good match and her mixed ethnic heritage (Anglo-Burmese and Irish) meant that there were no perfect matches on the registry. There were a couple of close matches, but unfortunately, Nikki was producing very high levels of HLA antibodies, which increased the risks of a transplant. By Easter that year we were told that a transplant would be too dangerous to carry out. Nikki had a few months in remission where she wasn’t undergoing active chemotherapy (but continued monitoring as an outpatient) and we even managed a holiday to Ireland. By the end of August that year the progress she was making seemed to go into reverse and she started to experience neuropathic pains (which can be a side effect of chemotherapy but not the drugs Nikki had been administered). In September 2014, leukaemia was found in Nikki’s central nervous system fluid. Not only was this a relapse, this was a highly unusual and dangerous type of relapse. There followed more chemotherapy, a course of specialised radiotherapy at the Royal Marsden and going back on to the transplant programme.
It seemed that there were so many setbacks, and even when the odds were shortening, we were fighting to win right up to the end. It was tough, but we held on to the fact that right up until the end, there was a possible path to recovery.
Waiting for the donor search
Waiting for the donor search to take place was very difficult. Because of how Nikki’s disease progressed, we waited twice for a transplant. The second time around, Nikki’s HLA antibodies had decreased, so it was considered acceptable to go with a near rather than perfect match. We had a donor lined up for January 2015, but he failed his medical so we had to wait two more months. At this point, when we knew that the transplant was the only hope, we just wanted it to happen. That said, the whole experience was an emotional rollercoaster throughout.
We became aware that having a mixed heritage makes it harder to find a matching donor. Nikki’s own mixed heritage was itself highly unusual, so finding a perfect match was going to be that much more challenging. Moreover, whilst there is great international cooperation in finding donors, Burma did not have an infrastructure that made it possible to recruit donors directly from there. We did hook up with Burmese groups in the UK and Australia for a targeted appeal for Nikki, in addition to us using the interest our story generated to recruit donors more widely.
The response to Nikki’s appeal for a match has been tremendous and many friends, family members and the wider community helped to spread the word far and wide. Our social media (Facebook and Twitter) helped us to spread the word. We also worked with DKMS and other appeals to help raise awareness. At one point registrations with DKMS jumped 100%, which was attributed to our campaign. Of course, whilst this will not now help Nikki, I hope that it can save the lives of others.
We are continuing to raise awareness of the importance of registering as a potential blood stem cell donor. I don’t want other families to go through what we’ve been through. It was only through Nikki’s experience that I learnt that people who were from BAME or mixed heritage backgrounds are less likely to have a compatible donor compared to white Europeans. I don’t think we should let up in the campaign to recruit donors until there is a 100% chance of finding a compatible donor for everyone that needs one.
Becoming a potential blood stem cell donor
To anyone thinking of registering as a potential blood stem cell donor, do it. The process of registering really involves no effort. All that is needed is a swab of saliva from your cheek, which provides enough for your tissue type to be mapped. If you are ever called to be a donor, the chances are that this will involve a few outpatient appointments, first to receive the hormones to stimulate the stem cells, followed by the collection of the stem cells in a process similar to giving blood. The process involves a little discomfort and inconvenience, but not any more than giving blood. If you are called to donate your blood stem cells, you get the chance to possibly save a life, what a privilege!'