Rachel Lavin: How do you thank a life-saving stranger?
Three years on from a life-saving stem cell transplant, Rachel Lavin reflects on the kindness of the anonymous donor who helped her finally kill cancer
Published 28/02/2016 | 02:30
Last Saturday was a landmark anniversary for me. As I stood in the centre of a balloon-filled room surrounded by dear friends, I blew out the sparkling candles on a cake as they sang 'Happy Birthday'.
But they weren't celebrating the date of my birth, rather my rebirth.
It was a birthday party for my immune system, which is three-years-old this month after being anonymously donated to me through a life-saving stem cell transplant in 2013.
Stem cell transplants and bone marrow transplants are one of the same. Both are end-of-the-line cancer treatments that effectively kill off the patient's immune system and regrow a new one from the donated bone marrow or stem cell of a donor.
And at 20 years of age, after being diagnosed with cancer for the third time, I needed the life-saving treatment to finally cure me of Hodgkin's Lymphoma. For me, a stem cell transplant was the only way to ensure my cancer would get gone and stay gone.
But I needed one thing; a donor.
"You have a 25pc chance of matching a sibling from the same parents," explains Dr Diarmaid O Donghaile, director of the Irish Unrelated Bone Marrow Registry.
"For anyone who doesn't have a sibling match you're referred here for an unrelated donor search."
None of my siblings were matches and so I was placed at the mercy and generosity of a worldwide blood stem cell donor database.
The IUBMR has 20,000 Irish people on its registry which is connected to the worldwide database of 27 million potential matches. Last year they helped facilitate 58 blood stem cell donations, six of whom were Irish donors helping other Irish patients.
"You go for the best match, the first thing is to be the correct tissue type so if you're a fully matched donor that's what you'll go for no matter where they are in the world," says Dr O Donghaile.
As a result my match could have been from anywhere in the world, but because I'm north European and caucasian it's the easier match, both because developed countries have a larger donor base and that Irish genes in particular are quite widespread around the world because of our huge diaspora.
This is the most I'm allowed to know about my donor as the process is completely anonymous to protect the identities of those involved.
I am however allowed to write a letter of thanks, an overwhelming task because, after all, who is this person? What motivated them? And how on earth do you thank the stranger who saved your life?
Although I can't speak to my donor, I do make contact with two registered donors my age to understand their experience more.
Gina (23) signed up to the registry after learning of her brother's cancer diagnosis.
"I joined because if I, or any of my family, ever needed bone marrow we would have to use the registry and it just made sense. If I was going to have to use it then I should be on it in case I can be of any help to someone else."
Gina has been on the registry for four years and is unafraid of being selected.
"I'm not at all afraid of being called. I would actually be delighted if I was because it means I'm giving someone the chance of getting better. If it gives me the opportunity to at least give them a chance of getting better by donating, then to me it's the obvious choice to go on the registry."
Registered donors have less than a 1pc chance of ever being called upon as a match, so for Seamus (25) who had signed up to the IUBMR after finishing college, he was more than surprised when he got his call a little earlier than expected.
"I got the phone call about three months after I signed up to the registry. They said you've come up as a potential match for somebody, is it something you'd like to do?".
A healthy young athlete, Seamus had given blood once a year since he was 19, but always during off seasons so as not to affect his performance. However now he was retiring, he wanted to do something more.
When he realised he couldn't give platelets as his veins weren't strong enough, as can often be the case, he took a nurse up on her mention of the bone marrow registry, signing up online and submitting a blood sample at a specific clinic appointment that was then arranged.
When the request for bone marrow came through to Seamus, he didn't even hesitate in considering the procedure.
"It was never a question for me, I made a resolution when I signed up that would I go through with it, I was always going to do it. At the end of the day, no matter how sore it is for me, even if it's painful it's only for a couple of weeks so, for someone else I could save their life."
However the process can be a big ask.
Dr O Donghaile explains that if someone is selected to donate stem cells it will require five days of injections to stimulate stem cell growth followed by one four-to-six hours appointment connected to a blood-filtering machine that separates the stem cells from your blood, 'like milk and cream' he says.
Bone marrow donation however is a little more invasive, with a general anaesthetic required as doctors remove the fluid containing bone marrow from the pelvic bone. It can cause some lower back pain in the following weeks as well as tiredness as the blood count builds back up.
While Seamus says he had to stay overnight in hospital, he was back at the gym within four weeks. Perhaps the longest after effect of the procedure for Seamus was both the pride that comes with donating to save some one's life, but also the curiosity.
"You can't help but wonder. You could walk by them on the street, you could bump into them anywhere. They could be your nextdoor neighbour or in the middle of Australia."
But despite not having contact or knowing who now shares his DNA, knowing they are doing well is all Seamus cares about.
"Not a day goes by that I don't wish that things are really going well for them. Some days I think it would be really nice to hear from them, but I'd be more than happy to not hear from them and know they're well from the blood service, that would be enough," he says.
"For me it would be more than enough."
In the end, I abandon several drafts of a thank you letter, scrapping the emotional rants, and instead purchase a simple keepsake card.
I realise, aside from the knowledge I'm doing well, all I really can give my donor is perhaps the very least thing they seem to expect from the whole experience.
Inside the card, I simply write "Thank you, for saving my life."
If you are interested in joining the Irish Unrelated Bone Marrow Registry you can apply online at giveblood.ie