A year ago today, somewhere in the UK, a man died. We don’t know who he was or who his family are but in his last hours they gave us a gift we could never repay.  For that family the day would visit them with darkness and touch them each with grief, changing what they carry from then on.  And their kindness in their sorrow kindled hope in each of us; a chance to take us through our own gathering darkness and on to brighter days.

Lucia walked down the corridor a year ago this afternoon from the Liver Intensive Therapy Unit (LITU) to the Liver Transplant Theatre with her head held high and her heart full of hope. Our words, our hugs and kisses were poor expressions of the depth of feeling of us all, but they had to carry us through. “See you next year,” Lucia said, with a smile that lights us still. “You’ll see me before then but I’ll still be asleep!”

After 14 hours in the theatre and the most demanding of transplant operations, the surgeon came to us in the waiting room. Two hours earlier the transplant coordinator had warned us that it wasn’t going well. “They are doing everything they possibly can so we are hoping and praying it can be enough and we’ll see how it goes.”
We don’t remember breathing after that until the surgeon came through the door. “Better,” he said. We grasped at the air his words brought.  Not better as in “fixed, all OK”, but better than it could have been, better than they all expected, better enough to work with. Better enough to go back to theatre in a couple of hours for much more.
When Lucia received her transplant her donor gave to us…a chance to breathe.

It was a long and hard road that followed until almost five months later and still in LITU, Lucia closed her eyes for the last time and her light and life continue in ways we can’t hug.  Those weeks, hours, moments are a mixture of the hardest of images tangled inseparably with the warmth, hope, quiet persistence, resilience and determination of a young woman who said she “couldn’t wait…to be up and about causing mayhem and making trouble”, who had, as she wrote in her last blog (March 2020), “so much more living to do”.

There was immense care around us all, skill given in kindness and commitment, support and encouragement from family and friends at home and around the world, including some of the youngest voices from Lucia’s teammates in the Games.  And there was love enough to hold the four of us together. We worked our way through the intensity of feelings and were graced by Lucia’s smiles, conversation, holding hands, finding ways to hug a little through the ever-present lines and tubes.

We helped her with exercises, physio, and at its best, a routine in a bedside chair to an Alicia Keys track, helped her stand to a walking frame, even make a few steps across the room and back.  As always, Lucia helped us more, with her gentleness, her courage, her gracious collaboration with the next things that needed to be done.
When Lucia received her transplant her donor gave to us…the chance to be together.

This was Lucia’s fourth transplant. When anyone asked during those 12 years since her first if the previous transplants had failed, Lucia said, “No. They all worked. They all kept me alive and brought me to today.” Even this last transplant worked. It was other complications that clouded the scene.

So, on this anniversary on which someone’s life ended and gave the chance of a lifetime to our daughter, sister, we are grateful to another donor and to his family. In those few months, even in the darkness, we made more memories together that will last a lifetime. The gracious generosity of Lucia’s last donor, and each one before, will remain in our hearts, treasured and honoured alongside her, with gratitude.

 

We’ll soon arrive at 1st of January. I wonder what you’ll be doing then…

Today’s words are from Keeleigh, (never short of a few!).

“When I received my transplant my donor gave to me… more than I could have possibly imagined. They gave me hope, the opportunities I never even dreamed of. They gave me the world at my feet, to explore, to accomplish and challenge myself. They gave me more than material things, nothing that comes wrapped with bows. They gave me the opportunity to spend time with friends and family, meet new friends and to create the most magical memories. My donor family gave me a chance.”

They also gave her the chance to become a friend to others. And she has, as many will confirm with enthusiasm and a dose of hilarious stories.

On 1st January Keeleigh will set off on a walk from Land’s End to John O’Groats (well, the equivalent distance a bit closer to her home). Being typically Keeleigh, she’s about to go much more than the extra mile for someone else. These miles are for her brother, Klaiton. Have a read of Keeleigh’s generous story on this link (another two-for-one blog – such value!)

Oh, these donors and their families, they give so much more than they could ever know.

Today there’s a special Christmas gift – a two in one blog. A multi-media special.

In 2017, The Children’s Liver Disease Foundation (CLDF) invited a small group of young people on a week-long residential (“Talk, Tell, Transform”) to talk with each other about their experiences of living with liver disease, some of which had led to transplants.

The young people’s family members will probably never know all that went on in that mix of laughter, tears, struggles and support, although some entertaining stories have occasionally leaked out.

At the end of the week, the participants were invited to tell something of their own stories to camera. The short video stories shared on the CLDF website are all powerful, honest and moving. This one, from Luke, was all of that, and presented in a creative and unusual way. Just click on this link and watch how one young star chose to tell his story.

That was three years ago. Since then Luke has made the wheels turn – literally, by winning medals for cycling in the World Transplant Games. On or off a bike Luke’s not standing still.

“When I received my transplant, my donor gave to me…a chance to go to University.”

That’s to do a Media Production degree, so we can expect to see and hear much more from Luke in the future, one way or another. A gift to us all, from his donor.

 

Today’s short blog could really be a book. Maybe someone will write that later, there’s plenty of material about this eleven year old miracle who sent us today’s words to think about.

Madiee, and her amazing mum, came to Birmingham Children’s Hospital in 2013 for a bowel transplant. Most of her first four years of life had already been spent in hospital. There was another year and a half inside for tests, assessments and hospitalised care during that wait on the transplant list until the call came. Even then it wasn’t all done as Madiee developed Post-transplant lymphoproliferative disorder (PTLD), a cancer that sometimes follows a solid organ transplant.

The treatment – and all the love – worked.  There’s a whole world in these words from Madiee:

“When I received my transplant my donor gave to me…a life out of hospital.”

This year Madiee laughed and danced her way through her eleventh birthday.  Now she’s out and about, as much as many of us can be.  Maybe someday your paths will cross (come to the Transplant Games sometime and enjoy watching her participate with a thousand others).  But watch out – she’ll make you smile and capture your heart.  And that wouldn’t be possible if someone, somewhere, hadn’t had that conversation…

Are you happy in your skin? What’s that mean? You maybe are, many aren’t. Even if you are happy or proud of the colour of your skin someone else’s blindness or prejudice can cause such pain and damage that lives can be wrecked over it. People – people – looked down on as something less than enough, surplus to requirements, for the shade of their skin.

Maisie, one of Birmingham’s Courageous Heroes (Birmingham Children’s Hospital Transplant Games team) told us, “When I received my transplant my donor gave to me – skin that wasn’t yellowy.”
“When I received my transplant my donor gave to me – the chance to be symptom free.”

One of the symptoms of liver disease, and liver failure, is jaundice. The whites of your eyes grow a yellowish tinge. Sometimes it deepens, then not only in your eyes but in your skin. You start to take a yellowish tinge that can deepen significantly, even adding shades of green into the mix. It’s all about the level of bilirubin in your blood and how successfully your liver is cleaning it out – or not. The Children’s Liver Disease Foundation host Big Yellow Friday every March, reminding people to look for and pay attention to early signs of prolonged jaundice (more than two weeks) in children. It’s an important symptom, a clue to trouble that may need fixing because, for some, it can lead to the transplant list and a wait.

Meanwhile, you’re yellow. Not just on weekdays, or in poor light, but all the time. A visible symptom you carry around. It looks right back at you from the mirror every morning. You might get used to it, a bit. Until the shop assistant looks and laughs, “Are you supposed to be that colour?” Then the embarrassment all round as they realise it’s not a bad dose of fake tan but a sign that something is wrong inside. They’ll tell their friends later that day about how awkward they felt, and maybe even laugh it away. You carry it home. You feel rotten anyway so you stay in the house. You still need your friends but you’re watching and listening carefully for clues of their discomfort, trying to live as though it’s all OK. You’re still yourself, you’re just being coloured-in a bit differently. All the same, you choose not to look in the mirror before going to bed, waiting, waiting, for a call to come. It gets harder to sleep.

“When I received my transplant my donor gave to me – skin that wasn’t yellowy.”
“When I received my transplant my donor gave to me – the chance to be symptom free.”

Even within hours of a transplant the change can begin. Within days, when all goes well, you can be symptom free. Back to the colour you were supposed to be. That’s all. Your own colour. Not anything spectacular, just normal. Back to you. Your own normal shade of whatever you should be, which is pretty spectacular in itself. And the chance to feel, to know, how important, how beautiful it can be to be comfortable in your own skin. Just as we should be. No more, no less.
“On the second day of Christmas my donor gave to me… my natural colour.” Reason enough to be grateful. And proud.

So, twelve days of Christmas, here we come….

Not with the same enthusiasm as other times, but this isn’t the Christmas that many of us expected or wanted, for lots of reasons. And that’s that, no more references to that other C-word; it’s doing, it’s done, too much damage already. These short blogs will be about other conversations. Yes, about organ donations, naturally, but also a lot more besides, or beyond.

Lucia would have managed a series of blogs for these twelve days in her own seemingly effortless style, no fuss no palaver (that’s palaver, there was often pavlova about this time of the year). We needed some support from others who know about transplants so we invited some filling in of the spaces at the end of this sentence –  “When I received my transplant my donor gave to me…”

And here’s a start, from Kathryn, a swimmer in the Northern Ireland Transplant team.

“When I received my transplant my donor gave to me…a whole new family.   I refer to my transplant friends as my transplant family – people who share a common bond, have been through similar experiences, have the same outlook in life and most importantly, have the same appreciation for our donor families and for their loved one’s amazing gift of life.”

On the first day of Christmas – a whole family of families…  That’s worth a conversation.

 

In the 70s, Seamus Heaney, a great poet from the North of Ireland, summed up people’s fears of saying the wrong thing in the “Northern Irish situation” in his poem “Whatever you say, say nothing.”

Today is N Ireland’s Organ Donation Discussion Day so maybe we’ll be forgiven for twisting it – “Whatever you say, say something…”

Here’s the why (including some words pinched from Lucia’s earlier blogs…always worth a read…)

Today, Robin Swann, the N Ireland Health Minister, has launched a public consultation on Soft Opt-out Organ Donation.  (Thank you, Minister – all change starts with a conversation…)

What does it mean? Read More »

This week, it’s thirteen years since the generous gift of a donor and their family gave Lucia a new opportunity for life.  The same day marks six months since Lucia died, a few months after her 4th liver transplant and just 4 days before her 21st birthday.  Even with this immeasurable loss to our family and friends, Lucia’s light and energy continue to inspire and give strength.

Volunteer Now (Northern Ireland) have generously honoured Lucia’s life and work by creating a new award for young people’s campaigning. On 19th November the winner of the Lucia Quinney Mee BEM Award for Campaigning was announced.  These first paragraphs are taken from the participation of Lucia’s family as the Award was announced.   And then the voice of the award-winning young campaigner…thirteen year old Anna Neal from County Down. Read More »

It’s tough going for a lot of people out there just now.  And if you have to stay in and maybe even on your own, it can be tougher still.  So there’s more talk about mental health and well-being going round.  That’s a good start.  Squash that stigma. Not easy.  It’s so much easier to tell your friends you can’t join them for a meal or a night out because you’ve got a rotten cold than to mention you struggle with social anxiety or an eating disorder.

Talking about mental health is a start.  Recognising it’s about all of us and not only the few is another step. Using some more of our taxes to improve mental health resources and shorten urgent attention waiting lists would make a huge difference.

Today is World Mental Health Day and there are lots of interesting, helpful and readable resources around to surf through. We’ll add a few links at the end of this blog.  Meanwhile, we’d like to offer some thoughts Lucia posted a while ago.  It’s worth another read. Read More »

Life changed very quickly, and I became that sick kid with cancer. My life revolved around a hospital bed, chemotherapy, sickness, infection and a constant worry that my time was fast approaching.