I can remember July 2014 like it was yesterday. My brother James had been to see his GP in the morning and by teatime he was being admitted to The Christie hospital in Manchester. I remember him saying the doctors thought it could be leukaemia but I instantly dismissed it. Our dad had been diagnosed with bladder cancer just two months before. Surely lightning couldn't strike twice?
Freya, with James as he receives her donated stem cells
It was later that same night we got the call from the hospital confirming the worst; it was leukaemia. We were told it would take a couple of days to confirm exactly which type. Despite this, James started chemotherapy straight away. It was action stations.
I remember thinking what a bizarre, surreal situation for myself and my family to find ourselves in. We were still coming to terms with my dad’s diagnosis in May, and now James. I live at home with my parents so dad was around for me to support him. But James was in The Christie and didn’t have the luxury of freedom, so I went most days to visit.
I'd never had any experience with cancer before so it was a very difficult time. The effect it had on me as a sibling was that of helplessness and I started to get panic attacks. It was a frightening time as we didn't know what was happening or just how bad it was. I was finding it hard to cope and was put on anti-anxiety medication to help me sleep and manage the situation.
"I remember him saying the doctors thought it could be leukaemia but I instantly dismissed it. Our dad had been diagnosed with bladder cancer just two months before. Surely lightning couldn't strike twice?"
It was confirmed a few days later that James had acute lymphoblastic leukaemia (ALL). It was explained to us that it was possible to treat and achieve remission but that part of the treatment plan would involve a bone marrow transplant. James needed to be clear of the cancer before this was possible.
The chemotherapy was working to an extent but it wasn't getting James where he needed to be; in remission. It was frustrating but we didn’t lose hope that there was something out there to help him. Thankfully, in the October, he was put on a trial at the Royal Marsden in Surrey.
While all this was happening, my sister and I were being tested in preparation for when the time would come to see if we were a stem cell match for James. Soon after, I received the call to say that I was the perfect match. So many emotions ran through my head. I was filled with happiness but felt quite anxious too, as I had no idea what to expect.
Freya, donating her stem cells
I had to go for more blood tests, an ECG and chest X-rays. It’s normal procedure but I found it quiet frightening as it all happened so quickly. I was then probed by a doctor at The Christie who trawled through my medical history to make sure I was 100% up to donating. Despite all of this, I had no doubt in my mind that I was going to do it.
Amazingly, James achieved remission through the immunotherapy which was fantastic and meant they could push for a date for the stem cell donation. I was called in for more blood tests to make sure I could still continue. My cells were extracted by the method of peripheral blood stem cell (PBSC), which included having injections every day for five days leading up to the collection. It’s a procedure that encourages the mature stem cells to grow. I had what felt like growing pains but it wasn’t anything I couldn’t live with. At the same time, James was being prepared for his transplant with total body radiotherapy.
The cell separation machine showing Freya's donated cells for her brother
Finally, after months, the day arrived for me to go into The Christie and be attached to the machine that separates the stem cells from the blood stream. I have small veins so trying to get the needles in was a task for the poor nurses who used heat packs and, basically, any other method possible to get them to show. Once up and running, I had to stay seated for six hours until they had collected enough stem cells. James is taller than me though so first time round I didn’t produce enough. I had another injection that night and was back in the next day for another six hours of separation. We then had enough and some extra to store. I wanted to stay and watch the transplant take place so I went up to his room and we waited for the bag to arrive. Twenty minutes later and it was over; talk about anticlimax.
"Going through something like this with your family makes you appreciate things a lot more, the things you would normally take for granted."
James took my cells very well. He was only admitted once following the procedure and suffered with a sore mouth but that was to be expected. Now over a year later, James has just had his 'first birthday' and continues to get on in life with no relapse so far. My dad has also since achieved remission but continues to have biopsies and Bacillus Calmette-Guerin (BCG), which is a treatment used for non-invasive bladder cancers.
James and I have always been close as there's only eighteen months between us. I was quite the tomboy growing up playing football with him and cars. As we got older, we’d go to Manchester United games with my dad. This experience hasn’t changed the relationship we have though as I would do the same for any of my siblings.
At times throughout all of this, I have felt guilty if I've enjoyed myself. I’ve also worried that James's body would reject the cells and that if relapsed I would feel very guilty. I tried to remain positive throughout though as you absolutely need to. Now, with the help of therapy, I have come to terms with what has happened and my worries are starting to lessen. If it wasn't for my friends and family, I probably wouldn't have coped. I know it sounds like a cliché but going through something like this with your family makes you appreciate things a lot more, the things you would normally take for granted. I have now joined the organ donation register and donate blood every three months. I'm not able to join Anthony Nolan for a few years just in case James needs more cells, but I plan to do that too.
I can't finish this story without commending James on how he well he’s dealt with the whole thing. He’s really inspirational.
To sign up to join the bone marrow register get in touch with Anthony Nolan here
Do you know someone who has been affected by acute leukaemia? If so, get in touch here.
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