Recently, the parents of a young child who needs a bone marrow transplant got in touch with me to share their situation.
They explained that one matching donor has been identified for their child, however their growing concern is that the donor has delayed their donation (and therefore the transplant) a few times and there is growing uncertainty as to whether the donor will actually commit to harvest.
The consultant is a bit dubious but the transplant team is apparently more hopeful. The family are doing their best to remain positive that the donor will proceed with the donation, however the decision as to whether the donation proceeds is completely out of their hands and rests with the donor.
The child’s parents describe the waiting as “unbearable” and I’m reminded of my own anxiety prior to Margot’s transplant.
It’s such a tricky situation because donors are volunteers and they of course have the absolute right to change their mind and pull out at any time; they can also dictate when they are available to donate. At the same time, it’s extremely difficult for the patient’s family to watch their child undergo unnecessary rounds of chemotherapy to try and keep the disease in check, whilst they wait and hope for the transplant.
The donation process is completely anonymous and with good reason; and because there’s such an absence of information, it’s never possible to really know or understand a donor’s circumstances. Needless to say, there could be any number of unavoidable reasons for delay or absence of donation, but one that is probably avoidable is the willingness of a donor to actually go through with the donation.
When you register as a potential donor, you’re routinely asked to confirm that you would be willing to donate both peripheral stem cells and/or bone marrow (to understand the two processes of donation, please click here).
As one donor, Ros Mafi, previously told us: “At times it [the forthcoming donation] felt quite overwhelming… I think that there’s a fear of the unknown and having the full facts presented to you helps to understand the process and that addresses any concerns.” “But it’s a privilege to help someone who is seriously ill.”
It’s entirely normal and understandable for someone to feel nervous about donation, but if during the registration process anyone ever expresses concern about being a donor, we always tell people NOT to proceed with registration and to instead go away and take time to re-think whether they really want to register.
Because nobody wants a donor to have second thoughts at a crucial time.
Very best wishes for 2016.
Together, saving lives
To hear from other Team Margot donors, please click below:
and to read a blog by Pamela Bousejean, a successful transplant patient, please click here.
Your benevolence not your money – this was a key point for us when we launched Margot’s appeal. We wanted to be clear about what we were asking people to do and didn’t want to confuse the message: we want more potential stem cell donors to join the registry. It doesn’t need to cost you any money – Delete Blood Cancer UK give new recruits the option of paying towards the cost of their registration and there is no cost to you to join the register via Anthony Nolan. Wonderful. And if you happen to give blood, you can also join the registry that way and again, needn’t part with any money at all.
You can donate money, if you wish – most charities ask for financial donations. Team Margot is of course happy for people to donate money to our charity but our primary request is for benevolence. We simply ask that people give up a few minutes to understand what’s involved and register. And then encourage Just One More person to do the same.
Quick, easy & painless – it only takes a few minutes to register online and once your DIY kit arrives by post, a similar amount of time to provide a cheek swab or spit sample.
Only seconds longer for blood donors – if you’re a regular blood donor, it literally only takes a few extra seconds to donate a little extra blood & you can join the register that way.
Registering is a ‘one off’ event – once you’re on the register, you won’t need to do it again.
Commitment – it’s crucial for anyone joining the stem cell register to understand what they are committing to do, if they are subsequently notified that they’re a match. For more information, please visit: http://www.teammargot.com/how-to-register/
You might never actually donate – on average, there’s 1 in 1,200 chance that you will be asked to actually donate your stem cells.
You can save a life – Should you be asked to actually donate your stem cells or bone marrow, then you can save a life. It’s an honour and a privilege to be able to give another human being such a precious gift.
You’re an anonymous hero – the donor process is anonymous for at least two years post transplant. And for as long as you wish, should you decide. Nevertheless, you’re a hero to the recipient, their family and friends. And to yourself.
The gift of hope & love – We know from Margot’s own experience that there are no guarantees, but at the very least, your gift of stem cells / bone marrow will provide hope to someone in need and afford them extended time with their family and loved ones. A precious gift.
Quick recovery – Your stem cells quickly replenish themselves, usually within a couple of weeks. For you, it’s a short term commitment, but your selfless donation creates a life-long legacy for someone in need and for their family & friends.
You can save a life.
Or at least gift someone more time with their family & loved ones.