Almost a relief to take the focus off walking and back to chemo this week - and that sums up how we're feeling about the rehab - at least at the Marsden it's chemo up, chemo down and very little we can do to intervene in the process. It's back to temperature watching and sick bowl holding but chemo is a pretty passive process and just a question of letting it take its course. Handed her over to the Marsden physio who had already heard from Stanmore about our ice skating incident on the bathroom floor so was ready to try to move things forward - not sure four days later how much success she has had really this week but at least it spreads the responsibility. Both very very bored of physio, of arguing with her, of talking about it, worrying about it and both at a point where we could easily give up - but have invested in a High School Musical dance mat and am hoping the lure of it might do something where devoted parents and legions of physiotherapists have failed!
Ward life in full flow this week with all the great people-watching and theatre it brings with it - Hallowe'en underway with witches hats, broomsticks, pumpkins and all things ghosty being painted and glitter-glued so playroom a big feature of Rose's week so far. Enormous folder of schoolwork gathering dust by her bed and since the playroom is half the distance from her bed as the schoolroom it's a no-brainer for her - haven't got the energy to fight with her about anything else just now and realise 3D shapes and spelling tests low priority. She has made a great witch's hat for herself and will be fabulously accessorised with it - together with teddy in matching hat - at ward Hallowe'en party next week.
And so it goes - from the sublime to the ridiculous. From sticking and gluing with her for all the world as if we had nothing more pressing to worry about to then meeting with her radiotherapist and remembering in vivid technicolour every awful detail of her awful awful illness. Nothing we didn't know already - but shocking all over again to hear Rose's chances discussed with detached impartiality and as each meeting brings us closer to the end of her chemotherapy more alarming. I can't stop myself from asking all the questions I don't want the answers to and then being horrified that they've told me. OHMYGOD IT WAS A TRICK QUESTION YOU WEREN'T REALLY SUPPOSED TO TELL ME. Anyway all now settled that she is not going to be having radiotherapy. Rather gratifyingly we learned that Rose's case had been discussed at a European conference on osteosarcoma a fortnight ago over a drink in the bar with some senior osteosarcoma chap with lots of ologies, the radiotherapist and our oncologist. They had discussed the contradiction in professional opinions over whether or not it would increase her chances to have six weeks of radiotherapy, slightly depressingly it seemed that the decision they came to was largely as a result of there not being convincing evidence either way rather than any happy conviction that she's not going to need it but hey ho. So few children with osteosarcoma and far fewer who have had radiotherapy means nothing particularly evidence-based and experience seems to be almost anecdotal. The decision, he announced, amounted to an intellectual debate. Fabulous. We parted from our meeting with him hoping it would be our first and last and that we would never have call to clap eyes on him again. But the elephant in the corner had been dragged centre stage again and it takes a few hours to regain any kind of equilibrium and focus again on the importance of getting that witch's hat exactly right...
