My Story

On the 16 November 2023, our lives were turned upside down when my husband, Moz (or Neil as some of you may know him), was diagnosed with something called Acute Lymphoblastic Leukaemia (known as ALL).  This type of Leukaemia is most commonly found in children and more rarely in adults.  For those of you that know Moz, you will know how incredibly fit and healthy he is.  The week of his diagnosis, he had ridden 100KM on the bike and thought he was suffering with nothing more than some heartburn, so to say that the diagnosis came as a shock, was an understatement. Lucky for us, we were looked after by the incredible team in the Haematology Department, Churchill Hospital, Oxford. Given that Moz’s white blood cell count was so dangerously high, he was immediately admitted to start his very intensive treatment.  There were initially a few scary moments, but Moz being the powerhouse he is, took it all in his stride, with the most incredible fighting spirit.

From the day of diagnosis, we were told that Moz’s best chance of a cure was going to be a stem cell transplant.  Moz is an only child, therefore a sibling donor was not going to be an option, so this meant going to the worldwide register and looking for a match and potential donor.  But before he would be able to have the transplant, he would have to undergo 6 months of intensive chemotherapy and radiotherapy to hopefully get him into a deep remission to give the transplant the best chance of working. The treatment largely comprised of 3 cycles.  The 1st cycle being a stay in hospital of just over a month, where he received weekly chemotherapy and a cocktail of various other drugs. The 2^nd cycle was probably the most gruelling.  This was twice daily chemotherapy (IV and oral) and on a Wednesday he had the added pleasure of an extra dose directly into his spine via lumbar puncture. His blood counts dropped considerably (as they were supposed to) but this left Moz very vulnerable and susceptible to infection, resulting in 3 emergency trips and stays in hospital for antibiotics and monitoring.  The 3^rd cycle was 2, 5 day stays in hospital, where he was hooked up to chemotherapy and a drip, 24 hours a day for the entirety of the stay.   

After the first cycle of chemotherapy, we were told Moz was in remission, so we could go forward in trying to find a donor for a stem cell transplant.  To say this was a terrifying process is an understatement, especially when you find out that only around 3% of the UK are on the register. After various tests and searches, out of 35 million people on the register worldwide, Moz had one match, a 32 year old lady in Germany and she had come forward and agreed to donate.

So, on the 18^th May 2024, after over 100 rounds of chemotherapy, 5 of which were directly into his spine, 8 hours of radiotherapy, 3 PICC lines (in and out), 5 bone marrow biopsies, 5 bags of platelets, 3 blood transfusions and so much more, Moz got his second chance and his stem cell transplant.  The months since have been hard, as the treatment left Moz feeling very poorly, suffering from extreme fatigue and very vulnerable, however his strength and determination to beat this is like nothing I’ve ever experienced. He is doing as well as we could hope and the most recent bone marrow biopsy has showed 100% donor cells and no detectable leukaemia.

Anthony Nolan was the reason we were able to find our donor, one of their volunteers flew to Germany to collect the stem cells and despite various plane cancelations and delays, they managed to get them to him, safe and sound. I’m not sure I have a better reason to raise money for this incredible charity, but not only do I want to raise money (please donate), take this as your opportunity to get on the stem cell register if you can, or encourage others around you to do so.  It is easier to get on the register than doing a covid test (and we’ve all done a few of those!) and if you are a match, it is as simple as giving blood.  By being on the register you really are a lifesaver in waiting.

I’m not a marathon runner (I’ve done it once many years ago, prior to having 3 babies!) and to train for this, whilst looking after 3 kids, Moz and working is going to be a massive challenge for me, but I believe if Moz can go through all he has this past year, I’m sure I can get myself around London.

If you are friends of Isaac, Barney or Clemmie, they are going to be doing a few little fundraisers too, so watch this space and please support them if you can.

Finally, I can’t sign off without a few ‘thankyous’.  Firstly, thank you to our army of support, who have helped in countless ways.  Thank you to the incredible care and support of the Haematology Team, Connor, Andy and Rob, but in particular Caroline and Emma.  Honestly, we couldn’t have done the last year without you both, you have gone above and beyond anything we could have ever imagined and I will forever be grateful to you both. Thank you Anthony Nolan, for making all of this possible and finding a donor against the odds and thank you to our incredible donor, who I just hope we get to thank in person one day.  Thank you for giving Moz a second chance, for giving me my husband and our children, their Dad. Finally thank you to Moz, your strength and positivity can move mountains and despite everything you have and are going through you continue to be the backbone (and fun) in our family.

Thanks for sticking with me for this long, if you can take anything from the above, then please please get on the register (and donate to this incredible charity) and support me in running the London Marathon 2025.