90% of Ted’s blood cells were cancer cells
We went to Tesco afterwards and I remember having Ted in the shopping trolley. People would smile at him, and anyone who looked our way I would tell them “His name is Ted and he is a lovely baby”. I knew he was dying and I needed people to know he existed. I didn’t want him to not have made an impression in life. It seemed so pointless and cruel. We didn’t have to wait a week for the results, within two hours the phone rang and our lives have never been the same since. 90% of Ted’s blood cells were cancer cells. He had infantile acute lymphoblastic leukaemia
, which is only found in children under 12 months old. The five year survival rate for this is 20-50%. Ted was considered lucky as he was given 50% chance, when he had an initial good prednisolone response. He had a minimal residual test, which was a new thing back then, and treatment began. He was put on a strict treatment protocol, and had four blocks of intensive treatment, followed by 18 months daily maintenance chemotherapy. Unfortunately, the chemotherapy instantly attacked his stomach and bowel, which meant he wasn’t able to eat, and nappies were put through their paces with the bowel damage. Ted was always neutropenic, and always had an infection. We would be in isolation all the time which meant we watched life happen outside his window. It became incredibly isolating for Ted and us. You are entered in to a world where choices are unbearable.