my journey with severe aplastic anemia
hi everyone :)
just thought id reach out and share my story with SAA (severe aplastic anemia).
my name is hayley (im 16), and on march 2nd 2013 i was diagnosed with severe aplastic anemia, which as some of you may know is an extremely rare bone marrow disorder and in fact not actually a cancer. however, treatment was very similar to that of a patient with leukaemia. if i had not have been admitted in to the good old RCH (brisbane) the same night of my first ever blood test i would not have been here today considering my blood results were horrifyingly low. when we were informed of the results i was of course in need of many platelet transfusions before any internal bleeding continued, and after hours of rotating nurses and needles a cannula could finally assist with blood tests to figure out what was wrong with me!! the next day i was rushed into the first of many bone marrow biopsies and once my oncologist dr little had given me a proper diagnosis everything that followed in the next month was preparation for a bone marrow transplant. luckily, we found a match (my little brother jake, who was 3 years old at the time) and he agreed to donate his bone marrow to save my life! then followed many ups and downs (mostly downs lol) including extreme isolation for 2 months, pneumonia which was then treated with ambisome that then sent me into Anaphylaxis in isolation, a big clumsy fall onto my hip in the middle of my transplant, gvhd (graft versus host disease) and so much more. even after all of these setbacks and years of immunosuppression and steroids, i pushed through and came out the other end as healthy as i could possibly be and i couldn't be more grateful to be alive in this world. i made so many new beautiful friends, some who lost their battle to cancer and some who won, and some who are still fighting to this day. i will always be thankful to all the people who made life with SAA so much more bearable and especially canteen who are helping me find myself and connect to new and old friends after so many years of confusion over my thoughts towards my journey.
wishing you all a strong new year and hoping 2021 comes with less challenge and more love :)
love , hayley xxx