Thank you again for such an amazing response to the first two posts in my Sunday blog series where I’m writing about my fight with aplastic anaemia from the very beginning. It’s been so lovely reading all of the messages I’ve received each week, especially those from people that I don’t even know.
After my condition being re-diagnosed as aplastic anaemia I started treatment quite quickly. My family and I spent a lot of time with my consultant discussing possible treatments, side effects, precautions and risks. Hearing so many complex words and drug names was frightening, especially at such a young age. I was only 11 and I was petrified however I kept going because I trusted what the doctors were saying and I knew that if I kept my chin up it would all be so much easier to cope with. There are loads of pictures of me during my treatment always with a smile on my face!
|I was receiving chemotherapy when I took this picture, believe it or not!|
As you can see, I tried to never let my treatment get on top of me. I knew that the pain and sickness was, however silly it sounded to me at the time, going to be worth it so I kept going. For a few weeks I filmed a video diary, which I’ll post on this blog later on in the week, and looking back at the videos I can’t believe how happy I was!
Behind the smiley face, however, was a very scared teenage boy. I couldn’t believe that this was happening to me and although I genuinely was happy to be in the best hands, some days I would just break down in tears because I felt like I couldn’t do it anymore.
From day one there had always been talk of a bone marrow transplant however my consultant wanted to try other treatments first that promised a quicker recovery. The first treatment I received was called ATG, or anti-thymocyte globulin, which is very difficult to explain but all I can say is that it’s produced by rabbits and horses! The doctors were amazed because they anticipated very bad side effects that would have me out of action for weeks but it got to day five of the week long intensive treatment and I was still acting perfectly normal! But that all changed in the last few days which bought fainting, vomiting, the works! Grim.
I was discharged a week or two before my 12th birthday and had to be kept isolated at home. It sounds horrible to be kept in isolation in your own home but I was so glad to be able to sleep in a comfortable bed and eat nice food! Fortunately I was able to go out with my family to celebrate my birthday!
Months passed and we went to an appointment with my consultant to receive the results of my ATG and unfortunately I’d been put forward to receive a bone marrow transplant. The consultant explained to me about tissue matching and how sometimes it can be very hard to find perfect matches but I found two or three! Unfortunately the first two weren’t able to donate and I was starting to lose hope when one day my dad got a phone call from the hospital saying they’d found a completely perfect match who was willing to donate and that I’d be starting treatment within a month.
In July 2010 I was transferred to University College Hospital, London and quickly started on an intensive cycle of chemotherapy to completely wipe my immune system. The first few days were fine, I felt generally ill but it was nothing compared to the first time round. I had one rough day out of ten which was great because I was well enough to walk around and look after myself. My life changed forever on the 15th July 2010 when after months of waiting, I finally received the bone marrow transplant that saved my life! I can remember the day so well – it was around lunchtime and when the bone marrow arrived I was eating a takeaway pizza (classy!)
It was quite surreal. As I sat there munching away at a pepperoni pizza, an anonymous donors bone marrow was being delivered to me through my hickman line (plastic tube that connects straight to the central artery) just like a blood transfusion. I was awake throughout and the procedure was finished within half an hour.
That evening, I received a small blood transfusion and I’ve never had one since – a far cry from having up to nine per week not so long before!
|Day after transplant – feeling better already!|
I was kept in hospital for a long time afterwards and was finally discharged and back in Essex in September – only to return 24 hours later – but that’s another blog post!