Bit of a delay in posting - bit of a momentous week for us. This chemo finished a few days ago and after her big infection and two back-to-back chemos we finally came home to resume the district nurses/physio routine - not that there has been much of a routine as we have had fewer than 20 days at home in 5 months but any time here is a bonus and although it's always worrying bringing Rose home when she is unwell it's very therapeutic for us all to go to bed and wake up in the same place from time to time. Especially precious as Felix had just come home from his wonderful holiday.
But only a day or so in came a body blow in the form of a letter informing us that Rose would after all have to have a course of radiotherapy post chemo as a result of the fracture and the very limited - 1mm - tumour clearance that the surgeon was able to take. Local high dose radiotherapy to the original tumour site decreases the risk of recurrence and in just about all other cancers would be a welcome and reassuring additional weapon against just that - with limb salvage surgery the sting in the tail is that it knocks out limb function. The high dose needed stiffens the artificial knee joint and kills the muscle tissue - the limb he saved nine weeks ago and that we have dedicated ourselves to rehabilitating would become useless by the end of February next year. We spent a day reading and re-reading the letter between making Rose do her exercises, trying to straighten the unstraightenable leg and going over the same ground over and over again - surely this was exactly what he had promised he would not do? Surely this was the conversation we had had in June in which he assured us he would not save her leg now if he thought at any time she would be a candidate for radiotherapy as the two were incompatible, surely this was what two oncologists had reassured us would not happen to Rose. What had it all been for - what was the point of the rehab, the trauma we were putting her through every day? Questions but no answers. The only thing I knew was that I had gone from deifying this surgeon nine weeks ago to wanting to kill him.
We knew we had an appointment with the big man himself coming up yesterday in his packed outpatients clinic and pinned all our hopes on this chance to have our say, to try to understand what had been decided. Everything about the meeting seemed doomed - Rose (absolutely terrified of seeing him, convinced it is somehow her fault that the leg is not working yet) threw up the whole way there and all through the endless wait to see him and we sat not even knowing if we would see him or get palmed off with a registrar. But we did see him - he has been away for the last three weeks and it seems the radiotherapy decision was made in his absence by his colleagues. A clinical decision, not a parental decision, and this is as it should be. Parents we know will never make the right decision. But a decision made not taking into account all that has gone before with him and Rose and the conversations and situations we have faced together. In the face of resistance from his colleagues present he overturned the decision and agreed that the quality of life benefit to her of mobility outweighed the reduction in risk of recurrence - ohmygod momentary elation followed by more fear which hasn't gone away. Every day we deal with the physical disability this cancer has caused Rose - the cruel double whammy of being six years old and not having walked for five months plus all the indescribable awfulness of going through such a rigourous chemo regime - and we want her to walk, to be a child again. He quickly dictated a letter documenting this decision, stressing that we were aware of all the facts and risks and booked Rose in for a week of rehab next week at Stanmore. In minutes my relationship with him was restored - he was back on his pedestal.
We came home jubilant, put the kids to bed and spent the rest of the evening in tears. We are a car crash - realising that there is no such thing as good decisions, that everything brings more or less or just different pain, that she pays now or later or both, that it may all prove academic, that perhaps by January the situation will have changed and radiotherapy will for different reasons be back on the map. But for today it's back to what we pray for - chemo and rehab, drugs trial and over.
