After a year of gruelling treatment for leukaemia, doctors told Jane Samuel and her partner, Lesley, that their daughter, Kate, was through the worst — the relief, says Jane, was ‘indescribable’.
They were even able to take Kate and her twin sister, Anna, on holiday, to Bluestone, Pembrokeshire — the first family trip since Kate had been diagnosed aged just five.
But within weeks of their return, Kate developed headaches and started vomiting. Tests showed that the cancer had returned and her devastated parents were told her only hope was a bone marrow transplant.
It would now be a race against time to find a suitable match.
‘When she started treatment we were told she had a 90 per cent chance of survival — that had dropped to 50 per cent,’ says Jane, 47, a scientist for a pharmaceutical firm.
James Willmore (left) donated his bone marrow when he came up as a match and the recipient ended up being five-year-old Kate Samuel (right)
These strangers and their recipients rarely meet. Under strict protocols either can choose to make contact (the two families pictured together)
‘Time was running out. We just had to pray that a bone marrow match would be found in time. We didn’t know if she’d survive.’
Adding to their anxiety was the fact that their daughter’s chances rested on the generosity of a random stranger.
Bone marrow and stem cell transplants are used to treat blood cancers such as leukaemia and myeloma (cancer affecting the white blood cells).
They are particularly crucial for patients with diseases such as blood cancers, as chemotherapy and radiotherapy also damage the white blood cells, raising the patient’s risk of infection and of the illness returning.
The donated cells make their way to the bone marrow, where blood cells are made, to produce healthy new cells.
Every year more than 2,000 people in Britain need a bone marrow or stem cell transplant, according to the charity Anthony Nolan: 70 per cent won’t find a match in their family and must rely on a stranger.
These strangers and their recipients rarely meet. Under strict protocols either can choose to make contact, but that is made through the hospital transplant team and must be anonymous for two years after the transplant.
Writing a letter may be as far as it goes. As Dr Jenna Love, a psychologist for Anthony Nolan, explains: ‘For some, that may be enough; for others, choosing not to contact their donor at all is the right decision for them. And there are also some people who become closely bonded for life.’
Read the letters that started the friendship…
James’s first letter to the family:
I just wanted to send my best wishes to you and your family, especially your daughter. I was so overjoyed at hearing the news that she was recovering following the donation . . . so I can only imagine how you must have felt.
This must have been a tough journey for you all, from diagnosis through to treatment, through to recovery.
I also understand that the circumstances we face in Covid-19 must add to your anxieties or worries for the future.
So as a father myself, I just wanted to take the opportunity to say one thing . . . WELL DONE! For being such incredible parents, for showing such amazing strength, and getting through this together. You are extraordinary and I am so happy to have been able to support however I can, then now and in the future.
It would be great to stay in touch and see how she is getting on, now and in the future.
However if you don’t wish to do that, then I respect your decision — no pressure.
Best wishes to you and your family.
And to Kate herself:
I am really pleased to hear you are feeling much better! In fact, hearing that news was one of the best things I have ever been told!
You are an incredible person and I hope you will always remember that.
I am proud to have been a part of your life and look forward to hearing about all the things you are doing and the plans you have for the future.
… And their reply:
To the wonderful Donor:
Many thanks for sending us such a lovely letter — it was a joy to receive. Yes, the past year has been a very tough one for us as a family, but especially for our daughter who has had to go through so much in relation to treatment — and on top of this all the added pressure which Covid-19 has brought on our lives!
We are getting through it and try to celebrate all the small things which under normal circumstances you can miss.
To this end, we just want to thank you for all you have done for us as a family to enable our daughter to continue with her life and keep our family complete. It is truly appreciated.
We, too, would love to stay in touch and very much hope that when we hit the two-year post-transplant mark in a year’s time we can be less anonymous.
Many thanks again and best wishes from our family to you and your family.
That’s what has happened to the two lovely families here. Fortunately a bone marrow match was found for Kate and she recovered. And then, nearly two years after her daughter’s life-saving treatment, Jane unexpectedly received a letter from Kate’s donor.
‘I just wanted to reach out and send my best wishes to you and your family, especially your daughter,’ it began.
Jane read it out to Lesley and the girls — and replied instantly. ‘I just wrote straight from my heart,’ says Jane. ‘Kate especially wanted to say a big thank you.’
It was to be the beginning of a correspondence that culminated six months later in the two families meeting for the first time — for a picnic in a park.
‘It was amazing’, says Jane. ‘It felt like we’d known them for ever. It was so easy between us all.’ So easy that they are now firm friends who see each other regularly.
Such shared happiness is in vivid contrast to the torment the family went through when Kate was diagnosed with leukaemia.
The then five-year-old had been having nosebleeds for weeks and was constantly feeling tired, so Lesley, a full-time mum, took her to see the GP after school.
The GP thought Kate looked so unwell that Lesley was urged to take her straight to hospital.
‘Lesley rang me sounding really upset,’ says Jane, who raced to meet Lesley, Kate and Anna at the John Radcliffe Hospital, near their home in Oxford.
The family was totally unprepared for the bombshell that was about to hit. Tests showed Kate had leukaemia. ‘Lesley and I were in complete shock,’ recalls Jane. ‘We were trying to be positive for the girls, but it was difficult.’
But having been told Kate had a 90 per cent chance of survival, things ‘seemed quite positive’, says Jane.
The treatment Kate needed — a bone marrow transplant — involves first undergoing chemotherapy to kill off the patient’s unhealthy bone marrow cells, then the donor cells are infused via a drip (the families pictured together)
The family was totally unprepared for the bombshell that was about to hit. Tests showed Kate had leukaemia
‘Anna was upset that Kate wouldn’t be coming home with her but we told both of them that she had cancer, and she would need medicine to make her better.
‘We didn’t realise how horrible the treatment would be, or how close we’d come to losing her.’
Within days, Kate had started on intensive chemotherapy daily for a month, then every few weeks.
But after a year, the doctors discovered the treatment wasn’t working and she had go back to intensive daily chemotherapy.
This worked, and doctors said Kate could soon switch to a two-year maintenance plan involving a daily chemotherapy tablet.
Feeling optimistic, two months later, in May 2019, the family took that longed-for holiday in Pembrokeshire. But then, devastatingly, the family discovered Kate’s cancer had returned.
The treatment she needed — a bone marrow transplant — involves first undergoing chemotherapy to kill off the patient’s unhealthy bone marrow cells, then the donor cells are infused via a drip.
Kate would then spend a month in isolation as her new immune system slowly began to rebuild.
But first Kate needed a donor. ‘There was a one in four chance of Anna being a match,’ says Jane, ‘but tests found she wasn’t, which was incredibly disappointing.
‘The chances of either Lesley or me being a good match were slim.’
This is because genetically related parents at best can be just a half match for their children, and Lesley isn’t genetically related to her daughter.
So doctors contacted the charity Anthony Nolan, which has a register of stem cell donors.
With the discovery a few weeks later of cancer cells in Kate’s brain, the search became a race against time.
Kate had more chemotherapy as well as immunotherapy to halt the spread, but the family knew it would work only for so long.
On November 15, 2019, Kate (centre( received the bone marrow transplant. The family knew only that the donor was male
With the discovery a few weeks later of cancer cells in Kate’s brain, the search for a suitable donor became a race against time
The letters that built a deep friendship
James’s second letter to Kate’s parents:
To the patient/parents:
Hello again! As we approach the 2-year anniversary (where has the time gone!) since the donation, I thought it was a great time to get in touch and check in.
I made the conscious decision to send very few messages to leave you to focus on your well-being, recovery and each other. I hope since we last messaged things have continued to improve even further and gone from strength to strength.
You have provided me with a new perspective and I still am and always will be very humbled by the whole experience. For that I will always be grateful.
From me and my family to you and yours, I look forward to hearing/seeing you one day.
Their reply to James:
Many thanks for your letter which was lovely to receive. The past two years have been tough for us with ups and downs related to our daughter’s health, but she continues to improve and we are now looking forward and planning for the future.
We are always grateful to your kind generosity which has allowed us to do this as a family.
I believe that now we are passed the two year anniversary that we are able to be in direct contact with each other.
We would all very much like this and we also look forward to hearing from you and maybe meeting you all in 2022!
‘It was such a stressful time — we were so fearful,’ says Jane.
It was a month later when the call came telling them a bone marrow match had been found — ‘an incredible relief’, even though it meant splitting the family apart.
‘We had to move to Bristol for four months, as Kate was going to have the transplant at Bristol Children’s Hospital,’ says Jane.
‘Anna had to stay behind with her gran as Kate had to be in a sterile environment.’
But before she could have the chemotherapy to get her ready for the transplant, Kate had to have radiotherapy of her whole body, including her head, to kill off any stray cancer cells. ‘We had to sign a consent form to say the radiotherapy would make her infertile and she may die,’ recalls Jane.
‘It was horrific. But we knew it was her only chance.’
The radiotherapy, given over two weeks, left Kate unable to eat due to painful mouth ulcers, and she had to be fed through a tube; she also lost her hair and needed morphine for the pain.
‘It was heartbreaking to watch what the treatment did to her body,’ says Jane.
And then the little girl had to have more chemotherapy, to destroy her own bone marrow.
Finally, on November 15, 2019, Kate received the bone marrow transplant. The family knew only that the donor was male.
As Jane says, candidly: ‘We weren’t curious to know more about the donor at that point — we were just focused on Kate getting through it.’ Just before Christmas, blood tests showed Kate’s new immune system had started to function properly and she was allowed to see her sister in person for the first time since November.
‘It brought tears to our eyes when they gave each other a massive hug, snuggled up and fell asleep together,’ says Jane.
Kate wasn’t through the woods — she developed graft versus host disease, where the new cells attack the patient’s body, and seven months after the transplant, she developed severe anaemia.
‘She had to be hospitalised and several times we thought we were going to lose her,’ says Jane.
‘Nothing can describe the fear that you feel in this situation.’
But she was able to go home in January, and went back to school in May, after a year away.
Receiving the letter from the donor in September 2021 was, says Jane, an unexpected bonus. ‘We didn’t know if we were ever going to hear anything, so it was a lovely surprise,’ she says.
‘We had always wanted to thank him. When we wrote back it had to be anonymous at first.’
They wrote several more times and as it had passed the two-year timeframe since the transplant itself, six months later in the summer of 2022, they were allowed each other’s contact details.
Kate’s family discovered the life-saving donor was James Willmore, 34, who works for a bank, from West Haddon, Northants.
He’d been on the donor list since the age of 23 — he’d joined after learning that his then partner’s father might have been saved if he’d had a transplant.
At 28, James was contacted as a possible match, but then a stronger match was found.
‘I was disappointed. It had been amazing to think I could’ve helped someone like that,’ says James. He ‘got on with my life’, until August 2019 when he got another message saying he was a match.
James showed it to fiancee Jenny, 35, a teaching assistant (they live with their daughter Adeline, three, as well as James’s daughter Florence, nine, and son Heath, seven; and Jenny’s son Elliott, 14, from previous relationships).
‘But I told her it may not happen as it hadn’t happened before,’ he says. ‘Then I got a second message to say that I was a strong match for this particular bone marrow transplant. There was no question in my mind that I wanted to do it.
Kate’s (left) family discovered the life-saving donor was James Willmore (right), 34, who works for a bank, from West Haddon, Northants
After a full health check, James (second from left) underwent the 45-minute operation to extract the bone marrow cells — this involved inserting a needle into the pelvis either side of the spine
‘The charity Anthony Nolan told me that children respond better to bone marrow donations over stem cells, so I knew it must be a child that I’d be helping.’
Jenny was a little apprehensive on James’s behalf: ‘It would be done under a general anaesthetic, and I hadn’t had one of those since I was four, when I had my appendix out,’ he explains.
James’s daughter was six at the time: ‘In my mind, this child became Florence,’ says James.
‘I looked at her and imagined if she was ill and I was sitting there every day just waiting for someone to come forward and save her. It didn’t bear thinking about.’
After a full health check, James underwent the 45-minute operation to extract the bone marrow cells — this involved inserting a needle into the pelvis either side of the spine. Afterwards he felt a little tender at the needle sites, ‘but I recovered within days’.
He wanted to write to the family he’d helped because, as he puts it: ‘It was a once-in-a-lifetime opportunity I’d had to save someone’s life, and I really wanted to know that it had been successful.
‘I wasn’t allowed to make it overly personal as it needed to be anonymous — and that was difficult.
‘I put in two messages — one for the parents, to say it was admirable that they were able to deal with such a thing happening to their child. And I also sent a message to Kate, saying she was incredibly brave.
‘I didn’t expect to hear back — that’s not why I wrote. But amazingly I did, a month later, and it was lovely.’
When they were allowed to have each other’s contact information, they shared details about their respective families.
‘It became a lot more personal for us,’ says James. ‘For the first time, the whole thing became incredibly human.’
The two families, including Jane’s mum and James’s and Jenny’s children, arranged to meet at a National Trust property in Buckinghamshire, last October. Jane says: ‘James and his family were delightful and we had a wonderful day together. And all the kids got on great, too.’
James adds: ‘When we met, we had a hug straight away, and it felt so natural. Kate and Florence went off and started playing.
‘There weren’t any tears, we were just all so pleased to see each other. I did wonder if Kate would look ill, and it was so lovely to see how healthy she looked.’
They met up again at Christmas ‘and played board games and went for a lovely walk’, says James. The families met up again at Easter, and Jane and Lesley have been invited to James and Jenny’s wedding in July.
‘We have a friendship for life,’ says James.
‘When I see photos of us together, it seems so poignant that a connection between donor and recipient such as Kate and myself affects so many people around us. It’s like the ripples on a pond.’
Cheshire-based psychologist Wendy Dignan says it can prove helpful for recipient and donor families to meet. ‘Donors and recipients can experience uncertainty, anxiety and feel a responsibility to recover,’ she explains.
But good social support can help — ‘this little girl has that support from her family, but the fact that she is building a relationship with her donor enhances that protective factor.
‘Separately, donors often suffer with feelings of responsibility and worry if it’s worked, and how the recipient is doing,’ she says, adding that ‘this pair are uniquely placed’ for coping with any anxiety that they may experience.
It is clear that they have a unique relationship. As James puts it: ‘We have a special bond, so I now worry about Kate as much as I do my own family.’
As a result of the treatments she’s been through, Kate, now ten, struggles with anaemia and needs to have her blood levels monitored weekly.
She is also smaller than her twin sister and is unlikely to go through puberty.
Jane says: ‘She’s struggling at school because she missed so much. But she’s very positive and she adores playing with her friends and sister.’
As for the man who helped make that possible, Jane says: ‘James and his family will be in our lives for ever. He saved our daughter — and to have found a wonderful friendship on top of that is fantastic.’
To find out more about joining the donor register, go to: anthonynolan.org/savealife