Community AA Voices - personal stories Alice: Life after childhood AA There is always hope My name is Alice Maddocks. In May 2000 I was diagnosed with Severe Aplastic Anaemia. Until then I was like any other 7-year-old girl, I loved school, dancing and playing with my friends. Other than having chicken pox at two weeks old I’d rarely been ill, so my parents were concerned when they noticed that I suddenly seemed to be covered in bruises. Then when I fell in my friends garden a few days later and they couldn’t stop the small cut on my knee from bleeding alarm bells started ringing. My mum took me to the doctors and I was immediately sent for a blood test. A few days later we returned for the results and my mum was horrified to see a post-it note on his desk saying ‘Alice Maddocks – Leukaemia?’. We were sent straight to our local hospital where I had my first bone-marrow biopsy, I remember feeling groggy and a little sore afterwards, completely unaware of how significant the procedure would be in finding a diagnosis for my condition. The doctor had explained to my parents that he suspected I had one of three conditions – a virus, Leukaemia or Aplastic Anaemia, but that it was unlikely to be AA because it is so rare. In June 2000 I was diagnosed with Severe Aplastic Anaemia when my platelet count dropped to 2. Life for my family changed from that day on. Where it all began I was referred to St James Hospital in Leeds to see a consultant who specialised in blood diseases. It was here that I received my first blood transfusion, the first of many. We were told that because Aplastic Anaemia is so rare treating the disease is not straightforward and that the best chance I would have of survival would be from a bone marrow transplant. My immediate family were then tested to see if they were a suitable match – 99% for a transplant to treat Aplastic Anaemia. I remember my sister was terrified and she was so brave when the blood tests were taken, but unfortunately neither she nor my parents were a match – I can’t imagine how this must have felt for them. They were advised that finding a match outside the family would be difficult because the register was so small, this came as a great shock to my parents and was something which they would change in the years ahead. The search for a donor continued but I could not carry on indefinitely receiving life-saving blood transfusions and so in the summer of 2000 I began my first immunosuppressive treatment (ALG). The next 18 months were a whirlwind for me and my family. We spent more time in hospital than at home and my parents were faced with caring for me in hospital whilst trying to maintain some normality for my sister Chloe. During this time, we received an abundance of kindness and love from so many people and I think this helped us to remain hopeful even when things got tough. Immediately after receiving the treatment serum sickness had set in. I developed a bright purple rash all over my body, became very sick and my joints seized up to the point where I couldn’t move. The next few days I was left fighting for my life and my family were told to be prepared for the worst. They asked Chloe if she would like to come to the hospital, but she was too frightened. I believe that this is why I held on, I could not have gone without saying goodbye to my sister she was (and still is) my best friend. I came through it, the nurses predicted then that I would regain full movement of my joints in 4 weeks’ time, but I hated having an entourage of nurses whenever I needed the toilet and so with some determination, it took me just 2 weeks. If at first you don’t succeed… My immune system had been supressed by the ALG treatment along with the effects of the new medicine I was on Cyclosporine, and so we spent much of our lives going in and out of hospital as I would often become unwell. During this time, I battled with chicken pox (again), shingles and pneumonia; all life threatening for someone suffering with total bone marrow failure. The long-term prognosis was looking bleak, I could not continue to receive such a large number of blood transfusions as the iron had begun to build up to unhealthy levels in my body which meant a new medication Desferal had to be administered during the night. Luckily, we were able to do this from home although I remember that I would often forget the needle was in my stomach and how it would be pulled out as I’d accidentally drop the infusion pack it was attached to when getting out of bed in a morning. As there were still no sign of a donor the only option was more treatment and so in the summer of 2001, I began my second round of immunosuppressive treatment (ATG). This time within hours the serum sickness set in testing the strength of my already weakened body. It took a few weeks before my health began to improve and all we could hope for was that this would have been worth it. Over the coming weeks my blood count did not improve, it appeared that my bone marrow had not responded to the effects of the immunosuppressive treatment. There’s a little bit more to my story During this time my parents became more aware of issues surrounding the bone marrow register, the lack of government funding, the little awareness of what it was and the slow rate it was growing at. These were all factors which were making finding a suitable bone marrow match even more difficult, so they decided to do something about it. There seemed a simple solution, to ask everyone who gave blood if they wanted to go on the bone marrow register, but people weren’t being asked – there was little awareness generally and so something had to change. After months of campaigning, many meetings and lots of newspaper articles trying to raise awareness, my parents were invited to attend BBC 1 Question Time with the Prime Minister, Tony Blair. This was their chance, they would ask him on live TV to support the campaign and give the register the funding it required to grow. With me and Chloe watching intently at my grandparents and as the programme drew to a close my mum managed to put forward a question. Unhappy with the Prime Ministers response she asked him for ‘five minutes of his time’ to which he obliged. He spent time with my parents after the programme and we were all subsequently invited to number 10 for tea some weeks later where they held a meeting to discuss the current issues with the register. It was decided that the register would be granted the funding it required to grow. Finally, their hard work paid off, the bone marrow register would get the recognition it deserved. They went on to write a book called ‘For the love of Alice’ which shares our story from the beginning and details the lengths that they went to in their campaign, with the hope of giving people like me a better chance. When I was poorly and there seemed to be no solution as to how I would survive this disease I would wonder why me but looking back now I know why. My parents are amazing, they decided it wasn’t good enough to hear there weren’t enough donors and sometimes it takes people like them to bring about great change. Within a year the British Bone Marrow Register (National Blood Service) became the fastest growing register around the world and although we will never know how many lives have been saved from the people who signed up following the campaign, I am so very proud of them for the lengths they went to make things better for others. The turning point A few months later while on one of my regular visits to see my consultant my parents asked about reducing the dose of cyclosporine that I was on. They were concerned about the long-term side effects even though my future was still uncertain at this point. My consultant agreed to reduce the drug slightly and monitor the affects. He was concerned that weaning me off this may do more harm than good but respected my parents’ wishes. I was still needing regular blood transfusions and Desferal as the amount of blood transfusions I was receiving still meant that I had an excessive build-up of iron in my body. I would receive weekly blood transfusions and my blood count would drop between transfusions, but one day the results came back, and they hadn’t reduced as much as they had done in the past. Everyone was surprised but we were told not to get our hopes up too much as it could be a fluke. My bloods were taken again the week after and still they remained at an acceptable level. We took it week by week. Sometimes I needed blood but other times I was able to last two or three weeks without. The next few months I finally became less dependent on other people’s blood and I was completely weaned off cyclosporine, my bone marrow had finally begun to work again. There is always hope My appointments to hospital became less frequent and the normality of life that I had craved for so long returned, I was even able to run in the school sports day that summer! I am now 26 years old, I attend annual check-ups in Leeds and have been in remission for over 10 years. I was diagnosed with a very small percentage of PNH cells whilst I was completing my A-levels, but this is so low that it doesn’t affect me. I know that in the future things could change for me and that there is a chance I could relapse, but I don’t let this impact on my life, I live for today and look forward to my future. This time of year makes me really nostalgic, I have memories of being in hospital around Christmas time and I know that there will be families today going through what we went through. But I hope that this will bring some hope, because even when all else failed we always had hope and I firmly believe that it helped me along the way to surviving this disease. Although I have had to work through some of the traumatic experiences I had whilst I was poorly, and my immune system is still at times a little weak I know how incredibly lucky I am to be here. I’m so grateful to have been able to travel Australia, complete the Great North run and go to University. Suffering and surviving this disease has taught me that no matter how tough life is or how bleak the prognosis – there is and always will be hope.