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How donating her stem cells enabled Freya to help save her brother's life ...

7/28/2016

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​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?
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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.
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Picture
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.
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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.
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"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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"Having AML taught me to live ... and for that I will forever be thankful"

7/27/2016

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I was ill for a while before I found out I had blood cancer. But I was only 23 and working in a school so my doctor kept putting it down to catching the latest bug. “What’s going round school at the moment?”, he would say.

Picture
Michaela, enjoying life after her treatment for AML

​I went back and forth to the GP four times. At the last visit, I was told I had allergies and was given a nasal spray. I was unaware this was actually making me worse as it was widening my blood vessels. I was so ‘grotty’, a woman in the waiting room actually moved away from me.

As my condition worsened, I couldn’t walk up the stairs. I had to crawl, instead. I had a constant whooshing noise in my head and found myself asking people to listen to the space next to me to see if they could hear it too. Needless to say, they couldn’t. I also found myself unable to reach the toilet in time which felt so undignified. My nose streamed with blood. It wouldn’t stop. This began to happen a lot. All in all, I was in a pretty bad way.
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Michaela, during her treatment for AML
​Nothing seemed to be working. My mum called the GP to the house in desperation but he just prescribed another course of antibiotics. Then I started to lose my eyesight. Everything was becoming blurry. I was holding my mobile phone in front of my face, set to the largest font size but I still couldn’t read it. Unbeknown to me, my eyes were actually hemorrhaging, slowly filling with blood.
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"Cancer is a funny thing. For many people it is the beginning of the end. But, for me it was the start of the beginning."

At this point, my mum called an ambulance. Enough was enough. I was taken to the local A&E in Chelmsford, Essex, where I was put in a room with a bed and a kermode. I was given a blood test and found myself drifting in and out of sleep. Being so close to death hadn’t even crossed my mind but I later found out that my blood level was marked as just three. A normal reading is twelve. Doctors pumped me with bags of blood filled with freshly frozen plasma and platelets. All sorts of tests were carried out and I spent the night hooked up to all sorts of machines.  
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Michaela, during her treatment for AML
​
The next day began in much the same vein with blood and plasma top ups. Around lunchtime, a doctor came in. I had never seen her before and I actually never saw her again. She walked in and spoke quickly and abruptly. I can still hear her words now as she told me I had acute myeloid leukaemia (AML). Before I could process the information, she had gone. It was all a blur and I couldn’t really take it in. I was young, healthy and had just qualified as a teacher, surely this wasn’t really happening? I later found out that the paramedics who took me in were told off for wasting their time on ‘just another dehydration case’.

It turned out that my case was rare. The statistics quoted to me were one in ten thousand. I was told that I would be transferred to St Barts in London when there was room for me. When I got there, I instantly hated it. I remember the horrible blue curtains around the bed. I didn’t want to stay or be left alone and I hated not knowing what was going to happen. I couldn’t see very clearly and my bowels were still upset, neither of which was helping. 

I had all sorts of tests and the next day a course of treatment was proposed. They decided to put me on AML Trial 17. This would include several doses of chemotherapy and a cocktail of drugs. The dose, they said, would be determined randomly. I was offered other treatments and was asked to sign all sorts of scary forms. It was overwhelming.
​
Having finally been diagnosed on 7th March, 2013, I was given my first course of chemotherapy on the 11th April. Then came the fantastic news that I was in remission. I continued my treatment until the 31st July and was finally discharged as an in-patient. That was four years ago and I’ve since been back every few months for routine blood tests. 

"I now see the cancer as a gift, a cruel gift but a gift nonetheless that taught me to live my life."
​
​My specialist haematology team were amazing and, no matter how much I hated being in hospital, I will always be grateful to them all as their knowledge and expertise has saved my life. For anyone in a similar position, my advice is to keep saying to yourself it’s all in the name of making me better. I had to remind myself of that a lot.
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Michaela, enjoying life after treatment, with her niece Francesca

Cancer is a funny thing. For many people it is the beginning of the end. But, for me it was the start of the beginning. The mental battle I faced in hospital was the hardest part for me. I can still tell you how many tiles were on the ceiling, how many blinds were in the window and how frequently the tap would drip. I used to try and wash myself away in the shower and will myself into a coma so I could wake up when it was all over. I had a lot of time to think when I was ill. I planned my funeral in my head but I also decided how I wanted my life to be different if and when it was all over. 

While, my journey had been tough, cancer has taught me to seize moments as they arise and to find the good in every day. No matter how hard you think your life is there are always so many reasons to be happy. Having AML taught me to live and for that I will forever be thankful. One of my favourite memories was leaving the hospital, having spent 36 days in filtered air and isolation, and feeling of the rain against my face. It was a beautiful moment.
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My treatment was in part funded by charities and I am hugely admirable of the work they all do and to all of the people who support them. Sadly, others along my journey weren’t as lucky as me, but with continued support and time, these statistics will hopefully change.

Do you know someone who has been affected by acute leukaemia? If so, get in touch here.

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