The diagnosis roller coaster
Harry had a cannula put in his hand that night and lots of blood tests followed. We were told he had a condition called ‘pancytopenia’ (when all blood counts are low) and we were eventually given a room for the night. We stayed there for a few days, desperate for answers. Harry had multiple examinations, scans and tests. At that time we were told that ‘pancytopenia’ could be caused by a virus that knocked Harry for six, possibly Aplastic Anaemia (to do with his auto immune system) or it could be leukaemia.
We were then referred to Kamran’s Ward at The John Radcliffe Children’s Hospital for further investigations and tests, including bone marrow tests which involved a general anaesthetic. We were all terrified and although I didn’t believe it was leukaemia (from something that Harry’s doctor had said to me) we continued to be hopeful.
I remember the morning so clearly when a doctor advised me that leukaemia had been ruled out. I was completely elated based upon what I thought the three initial possibilities were. Later on I realised that I had probably held onto the positives and hadn’t registered the negatives, as I recall being told that there was something else that they were investigating…another possible ‘malignancy.’
Russ was with Harry and I when we were told the next day (17th September,) exactly one week from his first blood test, that he had been diagnosed with the most dreaded of all children’s cancers, the rare and aggressive cancer that is known as Neuroblastoma. Not only that, it was stage 4, high risk and had spread all over his body (it was metastatic.)
We were completely and utterly devastated, and more than anything, terrified. I have NEVER felt pain like it. I also found myself to be incredibly angry and frustrated, why was this happening to us? Why Harry? Why my son?
Harry’s primary tumour was in his abdomen and was about 10 cm in length. It was also in is lymph nodes and bone marrow too. Harry’s MIBG scan (which shows a skeletal image of the cells taken up with Neuroblastoma) was terrifying; it appeared ALL over his body, even in his skull. I was shown this first image at a later date, during his reassessments and I don’t know whether it was deliberately not volunteered at diagnosis (because of how frightening it was) or not. Either way I’m glad I didn’t see it at the time.
Kamran’s Ward has been very good throughout, we had (and still have) faith in Harry’s consultant, and he and all the doctors and nurses were incredibly supportive and welcoming to Harry and us. Unlike us, they obviously knew they would be seeing a lot more of us!
Throughout this, Oscar – Harry’s big brother, has been amazing. He was pulled from pillar to post and suddenly had family returning from holidays to support us, whilst friends surrounded us. Oscar and Harry’s bigger brother Lawrence and big sister Eleanor, also came back from Australia. It must have been so frightening for him too. Russ and I decided not to hide anything from the boys. Once we knew what was happening, we sat them down together to tell them as much as we thought they would understand and have continued to do so throughout.
I wouldn’t have got through those first few weeks and subsequent months without my INCREDIBLE family and friends. That support continues, and I am so grateful to everyone.