My Story

Search for a Bone Marrow donor

Hello everyone,

My name is Nikki and I underwent a bone marrow stem cell transplant in March 2015.  This followed global appeal to find a stem cell donor for a bone marrow transplant.

Following the interest my story generated, I now want to encourage people to come forward as donors so that they may help others in the future.

I live in the UK, I’m 45 years old and my husband and I have two children, aged 8 and 5.

Background
I was diagnosed with acute myeloid leukaemia on 3 December 2013. In January 2014 I was told that my disease has a rare cytogenetic abnormality called the ten-eleven translocation, which put me at a high risk of relapse following chemotherapy.

Complications
As I’ve gone through this journey, more and more complications have arisen.

Firstly, my ethnic background: my wonderful parents are quite an exotic mix: my mother is Anglo-Burmese and my father is Irish. In bone marrow transplants, ethnicity really matters and when you belong to a relatively rare grouping like this, your chances of finding a donor can be quite low.

Sadly, although both my brothers leapt into the breach to offer themselves as donors, they don’t match me (it’s only a one in four chance for siblings to be a match). However, a donor was found in France who was a 9/10 match and we thought all was well.

But now we get to the final complication: I have a lot of extremely aggressive antibodies. This was discovered during the final matching test of my blood with the donor’s.

The wonderful transplant team at King’s College Hospital in London have tried to find donated umbilical cords which will match with me, but there wasn’t any match that would get past the antibodies.

I found out on September 2014 that the relapse has happened and my best hope for the long term is to find a 10/10 donor.

The relapse happened in my central nervous system and for a while doctors thought there was nothing more they could do.  However, a team at The Royal Marsden Hospital took over responsibility for my care.  Throughout November 2014 I underwent intensive daily radiotherapy at the Royal Marsden.  This treatment was tough but it has put me back into remission.

By early 2015 we had still not found that 10/10 donor.  However, the good news was that by that time my antibody production was not so aggressive and they decided to go ahead with a one of the near matched donors as this gave me the best chance of a prolonged remission and cure.

I am now longer looking for a donor myself, but countless people are interested in my story.  I want to use this interest to help others who may need a similar transplant in the future.

Please join one of the bone marrow donor registers
Donor matches rarely cross ethnic groups.  People who are from black and minority ethnic backgrounds or who have mixed heritage are far less likely to find a good match than others.  We therefore encourage all people to register, but especially if you are black or minority ethnic or have mixed ethnic heritage.  You could save a life!

In the UK, this can be with the Anthony Nolan Trust for those aged 16-30, with Delete Blood Cancer or with the British Bone Marrow Registry. Outside the UK, please see the list of Bone Marrow Registers.

Thank you.

Best wishes,

Nikki

 

402 thoughts on “My Story

  1. Pingback: Are You a Perfect Marrow Match? | IrelandCan.com

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