Steve had a stem cell transplant in 2023 after being diagnosed with high risk AML. For two years, he communicated with his donor anonymously but this year he got to connect with this 'generous-hearted' person and found out they have a unique shared history. In this blog he shares his experience so far, and we also hear from Steve's donor, Jennifer, too.
We were on the way to a friend’s wedding in Lisbon when I got the call. My doctor told me in polite but very firm words not to fly as my blood counts were dangerously low and I should check into a hospital immediately. After further tests, they broke the news that I had AML - and yet at the time I was still feeling relatively okay!
What followed was a long dark journey of almost 6 months in hospital with only minimal breaks at home between chemo. This was due to my immune system being reduced to zero, so I needed to be in an isolation room in a ward due to risk of infection, rather than have spells at home post-chemo.
I had high risk AML, but also my cytogenetics were diagnosed as poor, which made my prospects of survival weaker. A stem cell transplant was essential. It would be lifesaving. But first, they needed to reduce the cancer.
I had the first round of chemotherapy in July, but it failed to reduce the cancer. I asked the dreaded question: if the next (stronger) dose of chemo did not reduce the cancer, what would happen? I was told, ‘most likely palliative care’.
So in August I had a stronger dose, and waited 3-4 weeks later for results. I can vividly remember the phone call, with my family around me, when we got the news that it had worked. I could now have the stem cell transplant, and they had found a donor for me – in the USA!
My stem cell transplant
However I wasn’t out of the woods yet: due to the time required for the stem cells to arrive form USA, I had to have another chemo session in October to kill off any re-emerging cancer, and then I also picked up a lung infection in November, so had to wait once more for treatment to reduce that.
Finally, in January 2023, I had the stem cell transplant from my donor. I faced the very tense wait to see if the transplant had worked. When the key indicators (platelets, neutrophils, white cell count) started to move up from zero, albeit very slowly at first, I felt such a sense of victory. Triumph over the odds!
A few weeks later, I was finally released from hospital. The road to recovery was quite slow. I was like a caged bird as I wanted to get out and enjoy my normal outdoor activities such as tennis and cycling but while the spirit was willing, the body was weak. After six months post-transplant, I was feeling much better but it wasn’t really until a year later that I started picking up my sports again.
Life now
Just over two years later, I feel fully fit and I have recently done a coast-to-coast cycle trip in Devon (nearly 100 miles!) with some friends. I also regularly go away with my wife on short breaks and for the first time in many years we are planning a long-haul trip - to Mexico and Guatemala - this autumn. So, life is good! I embrace the positives, live in the moment, and plan lot of adventures and experiences given this new lease of life!
There was no doubt this was a long, arduous and sometimes very dark journey but I found resilience. Resilience is not just a physical battle, it was at least 50% mental, having a positive attitude and outlook was as much part of the battle. I believe my mental fortitude was helped by three things: Firstly, the love and support of my family who visited regularly and kept my spirits up. Secondly, I was blessed by inheriting my mother’s calm inner strength: she coped with much adversity throughout her life and I think she passed that ‘spirit’ onto me. The final thing that helped was my donor. If ever there could be a rainbow after the storm, my donor provided that rainbow in abundance. Her spirit and kindness have shone through from the very beginning.
Connecting with my donor
Right from the start, when we were only allowed anonymous contact, she was so generous-hearted and gracious. She said she felt so privileged to help me – as if it was her honour to give me the chance of life. After two years, we could waive anonymity, and we have been in regular contact ever since. It is incredible to me how total strangers can have such an impact on each other’s lives. She is part of my family now in some strange but wonderful way.
We have shared lots of details about our families and found out that we both have Jewish family from central Europe, going back generations, and we both shared tragedies during the Holocaust in losing family members. We think there may possibly be some connection, and we are now currently exploring our DNA ancestry by providing a sample of our DNA through a saliva test!
Jennifer's story
I joined the US based 'Gift of Life' stem cell registry way back in September 2013. I went to a Temple for a holiday with my Mom. I don't go to Temple very often, so it was lucky that this holiday visit turned into such a meaningful future blessing for Steve, me, and our family (yes, I now consider Steve and his family part of my family).
Gift of Life had a donor drive at the Temple that day, so I thought ‘why not, this looks easy enough and I could help someone’. Also, I have worked on blood cancer drugs at several biotechnology companies, and I have always been passionate about helping people who need better treatments.
I remember hoping that one day I would be able to save a life, but over the many years I almost forgot about signing up for the registry. Never did I imagine that I would be contacted many years later in September 2022, saying that I could be a life-saving match for, "a 65-year-old man battling AML in need of a stem cell transplant". Knowing that a person's life was at stake and that I could save their life was all I needed to know to spring to action. I felt extremely lucky to potentially save a life, there was no question that I would do every step necessary.
The donation experience was very easy and the whole thing felt incredibly purposeful and important. My fingers remained crossed that this would all work out for the recipient! I was told that there was a courier waiting to take the stem cells to the recipient, and never did I think that the courier would be traveling all the way from the USA to the UK. I can't imagine all the coordination and time this took to make it happen successfully, I am truly in awe of the amazing staff at the registries that work so hard and smart for the recipients and donors.
Being connected with Steve and his family is truly the most wonderful thing, a blessing that makes me smile and feel warmth in my heart. Humans can save each other, and this is something I remember with all the suffering going on in the world, all it takes is a simple swab and you can save a life. This is the best thing I have ever done, and I do feel like Steve and his family gave ME the gift. The gift of purpose, of love, and healing. I hope that more people join the registry so that more patients get a chance to survive, it is so important. I am grateful for this opportunity to be a good human and learn what is important here on Earth.
I hope that Steve and his family continue to receive all the blessings, they are lovely and deserve the best. One day I hope to meet them in person. My father and his partner were able to meet them in the UK during their recent travels, and they insist that meeting Steve and Shirley in person was by far the absolute best part of their trip. I hope my turn comes soon!