Matt was diagnosed with acute myeloid leukaemia, and went on to receive a transplant from his sister Liz in 2014. Liz shares her experience of donating to a sibling, and how her family coped with her brother’s diagnosis and their fears.
It has taken me a long time to sit down and write this, but I thought it was important to share as I found it hard to find information about siblings’ experiences of stem cell donation.
My brother Matt was diagnosed with acute myeloid leukaemia four years ago. He is my only sibling and my little brother by three years. We have a very typical sibling relationship, I can be horrible to him but no one else is allowed to be!
He lives in England and I’m in Scotland. I was on the first day of a holiday in Northumberland with my family and our parents when we found out about his diagnosis. When Mum arrived, she said ‘your brother hasn’t been feeling very well recently, I’m a bit worried about him’. Little did we know that 24 hours later he would be diagnosed with acute myeloid leukaemia (AML). He was 35 years old, a fit and healthy man, married with a wife and three young children.
Dealing with his diagnosis
He phoned us late one night to tell us he had to go to the hospital following results of a blood test he had taken at the GP that morning. He arrived and, to his surprise, found he was being sent to the oncology ward. I took the call from him and the next 24 hours were probably the worst of our lives.
My mum, dad and I went down to Nottingham to see him, while my husband and two girls headed back to Scotland. For me, my role was to hold things together when I was with my sister-in-law, nieces, nephews and parents. I did my crying with friends and my husband when I was back home.
Finding out I was a match
As soon as we arrived at the hospital, I was asked to take a blood test to see if I would be a sibling match. I wanted to be a match so badly, as I wanted to fix things for my brother. I feel for those siblings who aren’t a match, because for me it was something I wanted so much.
However, we always knew Anthony Nolan would find him a match if I wasn’t suitable. I used all the information on the Anthony Nolan website to explain things to my children and learn myself what the process would be.
I cried the day I found out I was a match out of relief, my sister-in-law cried too. My brother was having a tough day and couldn’t feel our relief.
Donating my stem cells
It was a very tearful goodbye to my kids the day I went down to Nottingham to do my good deed for the year. The medical process of being a donor was fine, I was sore for a few days and needed to do two days of donating so they could get enough stem cells, but when you are doing it for a family member you have the emotional aspect of the process.
I was scared – scared of being an only child and being left with my parents’ grief on my own (selfish as that may sound). It still makes me cry remembering the day I told my brother he had to keep fighting as I didn’t want to be an only child (in fact I am now crying writing this!).
My brother’s recovery
It hasn’t been a straightforward four years for my brother, and for a long time I worried my stem cells weren’t good enough and maybe he would have been better to have that 6ft Norwegian’s stem cells he always joked would be better. My brother has had a rough time with graft versus host disease (GvHD). However, he is still here and most of the time I am very grateful for that!
If you’d like more information or support about donating to a sibling, you can order or download our guide to ‘Donating to your Relative’ on the Anthony Nolan website.