Stem Cell Donation
This is a topic that’s very close to my heart and I used to be petrified about the idea of stem cell donation, after seeing adverts when I was young about Anthony Nolan. In the seventies, medicine wasn’t as far advanced as it is today and when we were in Bristol, I was told in no uncertain terms that before that first stem cell donation, it would not have been possible for children like Ben to have been offered the possibility of a potentially life-saving transplant. Shirley Nolan led the way.
I didn’t consider becoming a stem cell donor for years, because, well, frankly, it scared me. First and foremost, I imagined it was going to be painful, or take years off my own life and I didn’t want to put myself in jeopardy for another person, even if I really wanted to help them.
But then, I didn’t consider that one of my children was going to be diagnosed with an extremely aggressive form of cancer, that left untreated would lead to his demise in a matter of a few weeks. Yes, that’s how speedy acute myeloid leukaemia is. At its worst, the cells are multiplying at a rate of every four hours. Time to find a donor in the high risk situations are crucial.
I didn’t anticipate cancer coming into our lives so unexpectedly or so quickly, or the fact that I would be facing my fear of donating my bone marrow. Well, as it happens, becoming a mum to three amazing children, takes all that fear away. I would always explain to the children that a mother’s role above all else, is to protect her children. Well, it’s true, isn’t it? You’d do anything to ensure your child’s safety and longevity in this world; and Ben even asked me, ‘What? You mean if we were going to be hit by a car, you’d make sure it was you …?’ I remember smiling and agreeing that I wouldn’t actually plan to be hit by a car, but that my goal would be to make sure my children weren’t in that moment, so if it was them or me, it would be me. Maybe that’s a frivolous thing to say, but a few weeks’ later, sitting in the hospital watching a blue coloured medicine being pushed by a syringe into my ten year old’s blood stream, I would have done anything to be taking his place.
It’s the unpredictability of life that keeps us on our toes, isn’t it?
The reality of donating your stem cells for another person, isn’t what you might first believe. People my age in their forties and fifties will remember the adverts about bone marrow donation and it seems to be the case that there’s a huge misconception about what actually happens.
And the reality is, when you are faced with the prospect of looking for a stem cell donor, which could be, for some, like searching for a spec of gold in the world’s ocean, you’re going to be tested to see if you are a match … and then you’re going to sign up. In the moment I realised I might be able to save my son’s life, because he was unlikely to survive four rounds of chemotherapy, I realised that if I couldn’t, I would want to try to save someone else’s. After all, I signed my organ donor card. Why should donating stem cells be any different if you are in a position to be a donor? I will get on to that in a minute.
We had offers of support at the time from Anthony Nolan and DKMS, another charity helping those in need of a stem cell donation. Anthony Nolan take on people aged between 16 and 30 and DKMS take people from 17 to 55. Due to the age we were and the age of our friends and family, we decided at the time, to accept support from DKMS. This would help us reach a wider breadth of people, we hoped.
The Appeal that DKMS created was shown on our local TV News in August 2018, when Ben was turning 11 years old and we held our breath … for three weeks, while Ben underwent his second round of chemotherapy.
The fact is, you don’t realise that the ‘search’ usually means a start in your country of residence, but then it widens. Ben’s searched widened to Europe and then the USA. It left us in awe and when we were finally given news of a potential three donors, we were overjoyed and relieved. The timing here is crucial because the body is going through chemotherapy and the stem cell transplant needs to line up with recovery, before another round of chemo is needed.
How wonderful to have three potential donors, that would, over the coming few days, be narrowed down to one. One incredible person in the world of seven billion, who would be the best match for our son to live his life to the full. Wait a minute … three potential donors … out of seven billion? Well, if that was the case, how many people are on the stem cell register in the world?
According to the Internet, there are about 1.4 million people in the UK on the stem cell register as of 2020 (I am not sure that is correct, so don’t quote me!) That can’t be right? Surely! But there are over 7 billion people in the world? It has occurred to me on more than one occasion, that if it hadn’t been for those three potential donors taking the five minutes it takes out of their lives to sign up, that our son may have died so much sooner. It is a heartbreaking thought. Ben was lucky in that he was white caucasian. In the months and years that have passed, since Ben has left us, I have reflected on the fact that there needs to be so many more people on the stem cell register and not just white caucasian. Everyone from all nationalities, faiths, backgrounds need to be on the stem cell register, because cancer doesn’t discriminate. It could affect any one of us.
It’s really easy. Most, around ninety percent of donations take place by peripheral donation, which consists of you sitting in a bed for about four hours, while blood is taken from one arm. Then the blood is run through a machine which separates the stem cells from the blood and then your blood is sent straight back to you via your other arm. You are given injections beforehand, to be able to make more stem cells, so they are in the blood stream for collection. You might feel a bit tired, but it’s not a painful process. And I am told, you get cake, which has to be a plus while hopefully giving a family in need, more time or even saving a life!
The remaining ten percent might need to stay in overnight and have an operation. This is usually the case for the patients who are in different situations that might necessitate this being the case.
You can find out more and sign up to the stem cell register here in our son, Ben’s name, if you like …
It takes only a matter of minutes to do the cheek swabs you get sent to you. You then return them in the envelope provided, DKMS collects all the details and then you receive a ‘Lifesaver in Waiting’ card!
The Because of Ben Campaign came earlier this year, when we created a video for the DKMS campaign to help raise awareness and bring more people to the stem cell register. Please do take a look at it here and let it inspire you …
https://www.facebook.com/watch/?v=767246453900202
So, now I come back to the debate about everyone who can be on the stem cell register, being on it. You can always say ‘no,’ because you are alive and well. The thing about organ donation, is that you are no longer here when you get to donate. With stem cell donation, it is a personal choice. There are criteria and not everyone who wants to donate, can, but for the vast majority, it remains a magical possibility. My hope is that one day, people will automatically be signed up from the age of 18 years and will remain on that register until 55 or until such time as they are not able to (perhaps health issues, etc).
I will end this post with this. Firstly, our gratitude towards our unrelated donor, this incredible person who made the decision to sign up to the stem cell register, is unending. This person agreed, signed all the papers, went through the process of fitness checks and blood tests and then signed on the dotted line to agree to donate their stem cells in the hope of saving the life of a stranger. That takes courage and selflessness. It also gives families like us, hope.
Secondly, I want to leave you with this thought. If you ask yourself the question, ‘If I needed a stem cell transplant and someone could save my life, would I gratefully accept a stranger’s stem cells?’ and the answer is ‘yes,’ then, I ask you to please, if you can, do the same for someone else.
Thank you xxx
Ben and Roobarb