James’ Story

James was originally diagnosed with MPAL on 24th December 2020 at 1 years old. He was put onto ICU and after 24h hours of Chemotherapy he had a major stroke paralysing his right side, this was then followed by seizures. James remained at Addenbrookes with no option to go home until April 2021. After 6 intensive rounds of Chemotherapy, James’ leukaemia was getting worse and the form he had was rare – only 8% in the world have it and no one really knows how to treat it.

The only chance for James was to find a 100% bone marrow donor, but we had 2 weeks to find one and this was like finding a needle in a haystack. After testing all our children, unbelievably Faith his oldest sister was a 100% match which is very rare. He was transferred to Bristol Children’s Infirmary for the transplant and Faith had 1.5 litres of bone marrow extracted from her back. By late 2021, James finally came home and we thought everything had worked, and he would be monitored very closely every month till he was 16.

Unfortunately, on 30th September 2023, James relapsed and options were now very limited if any. But Professor Rob Wynn at Manchester Children’s Hospital was running a Stem Cell Trial using baby’s cords for advanced and difficult cancers and he offered to recruit James onto the trial. So, after 2 weeks of intensive Chemotherapy, we were supposed to go to Manchester, but James became very unwell on the Chemotherapy he was receiving, and going in for a regular lumbar puncture, James aspirated under anaesthetic and was sent to ICU immediately. After a couple of hours, James became very poorly and was kept in a coma for 24 hours. Later, he got sepsis, and then slowly that day his organs began to fail, James was now being kept alive by total life support.

After many weeks on this, the Consultants called us in to say they couldn’t do anymore and felt another infection they found had spread to his brain, and even if he did survive he was no longer a candidate for the Manchester trial. I fought my corner demanding MRIs and another bone marrow aspirate to see where he was at. I was also asking everyone I knew even strangers on social media to pray, light candles. I feel very strongly about my faith and something told me this was not the end, thanks be to God I was right his prayers were answered all tests came back clear, even the Leukaemia had gone from his bone aspirate. It left doctors astonished, they slowly woke him up and James remained very sick for many months, his weight was that of a 12 month old baby but we fought together.

Manchester Hospital were still keen to take him for the trial if we could get his weight up. On the 4th January 2024, he was transferred to Manchester Children’s Hospital and he received the Stem Cell transplant on 11th January 2024, this was hard as it initially made James very sick. After 12 weeks in hospital, we were then transferred to Ronald McDonald House in Manchester for them to monitor him. Finally getting home before Easter 2024 still lots of tests each week and monthly biopsies, but he truly is a miracle – a warrior like them all.