The wife rang the doctors about the boy as he has had a temperature on and off for the last few weeks. The 40 illness statistic was from the doctor who rang us back (not his usual one). She was cheerfully telling us about "normal" children and illnesses and not to worry. Her brain not taking in that the boy isn't "normal". This was after the wife had explained that the boy has a trachy and a brain tumour. Had it been face-to-face I'd have been tempted to slap her or rather to have stopped her and told her to listen to his situation. Like normal children have reduced immunity from chemo. Like normal children have trachys. Like normal children have had three brain operations. Pah! If it's not his usual doctor, the local doctors are not much use to us. They probably spend so much time seeing minor ailments that they have difficulties when faced with something serious.
Difficult day at work at the end of a difficult work week. But probably not as difficult a day as the wife. The Community Nurse, the Oncology Nurse from the local hospital and Paediatric Palliative Care Consultant from the local hospital all came over. They were starting to do the planning for the future. Do we want to spend time at home or in hospital? Do we want him treated if he's ill? And other happy issues. This was just a starter. We have a full-blown meeting to come in the next few weeks.
Meanwhile, the boy spent a thrilling hour standing on a chair so he could see the girl next door over the fence. He adores her. She is 7 years old and a thing of wonder for him. And she had a friend from school round. He was ecstatic when they were prepared to fetch a ball he was throwing over the fence. It is rare that something makes him giggle uncontrolably but this did. Was lovely to see.
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