In the early days everything seemed fine, but as the weeks and months went on we started to become increasingly concerned about Oscar’s development. He looked at us blankly quite a lot, and it was very difficult to get his attention. If we put him on the floor he made little attempt to move around and had limited interest in playing with toys. Despite our concerns, every health professional we visited examined him and told us to stop worrying that he was fine. Call it instinct, or ‘mothers intuition’ but his mum knew in her heart that something wasn’t right. She insisted on a genetic test, and finally we had an answer... Oscar had Jacobsen Syndrome.
In October and November 2011 Oscar spent quite a bit of time being in and out of hospital. He first developed a very sore shoulder/collar bone which prevented him moving his arm. X-rays showed no break but that the bone looked inflamed or infected. Following a blood test he was admitted to hospital with concerns that he may have leukemia. After another 4 days of tests he was discharged after he started moving his arm again. We were told it was probably some weird bone infection or viral thing. A week or two later he developed similar pain in his hips and couldn’t walk. He was re-admitted and after a total of 7 weeks of head scratching by doctors, and suggestions it could be leukaemia, bone infection, viral infection, chronic recurring multi-focal osteomyelitis, anaemia etc, a CT scan revealed that he had numerous tumours in his liver, spleen, lymph nodes, and also in the bones of his hips, legs and shoulder. Oscar had cancer. It was finally confirmed as High Risk Neuroblastoma, a rare children’s cancer which affects only 1 in every 100,000 children.