Just before my ninth birthday, I had an abscess on my stomach which started as a simple pimple and grew to the size of approximately 5cm x 3cm. About a month later, I was hospitalised for a chest infection, which raised a few concerns.
Aside from the abscess and chest infection there was no other symptoms at the time, but later deep bruises appeared on my arms. A second abscess then appeared on my thigh. However, I still wasn’t particularly unwell. I attended school. I did have some weight loss but nothing of any concern. Looking back at photos in the six months leading up to my diagnosis, I looked pale and tired but not unwell.
A few weeks passed and then the abscesses were removed. However, they were not healing. I had to be referred to another hospital. It was the biopsy of the abscess and a bone marrow aspiration (which was done at the same time) which caused a doctor at the hospital to write to another hospital for a second opinion, quoting that he was concerned I had an ‘immunodeficiency syndrome’.
It was then that the diagnosis of refractory anaemia with excess blasts in transformation (RAEBt) occurred approximately three months after my initial symptoms.
When I was referred to the second hospital the consultant stated in my notes ‘looks generally well’ and there were no signs of anaemia. My bone marrow aspiration (BMA) on 13/09/1991 stated ‘no evidence of malignancy’. My BMA on 25/09/1991 stated ‘shows trilineage dysplasia… it is ‘pre-leukaemia’ at this stage with blasts <10% but leukaemic transformation is likely’. My parents then attended an appointment on 3/10/1991 to tell them the diagnosis and that the prognosis was poor, with a bone marrow transplant the only likely curative treatment.
Again, the consultant stated that I ‘remain well in myself’. That’s the thing, to look at me you wouldn’t have thought I was so ill. As a child, all this commotion is going on around you and you are subjected to test after test, but at the end of the day you are still a child and life-threatening illnesses are not within your comprehension.
I had two courses of chemo and on 25/03/1992 I had a bone marrow transplant. My brother was my donor. By day +11, I was showing signs of GVHD. I was discharged at day +27.
I have been physically well ever since my transplant. I attend a post bone marrow follow up clinic at Kings College Hospital yearly to monitor. Psychologically, however, things have been very different.
I was extremely lucky in the fact that the first hospital I attended knew a little on the subject. I did not present the ‘normal’ symptoms. Raising awareness is so important. I believe I am still here today because of the ‘early’ detection. The fact that my symptoms were spotted before it transformed into acute myeloid leukaemia (AML) I believe saved my life.