What a week - drawing to an end now thank god, Rose asleep and am almost certain there is nothing new she can throw at us today! New developments every time her door opened today and none of them particularly welcome...
The Marsden finally made contact with the Brompton and an appointment scheduled for yesterday for a second-line echo to establish what it was the scanner had seen and not liked the look of on Monday. We have managed to hold onto our bed here so Simon took her there in hospital transport and delivered her and the report safely back to the ward. He seemed as positive as it's possible to be when looking at a monitor from a position of total ignorance but positive is Simon's default mechanism so never a realistic steer! So much safer to be me and always expect the worse... Anyway I was right life really is a bastard - she has sustained damage to her heart function as a result of one of the two chemo drugs she is having and the decision was made last night that it's not safe for her to have it again. Aaaggghh - I really couldn't have been more surprised if Rose had got up and walked across the room. There had seemed to be so many options, a reduced dose, a dose given with a heart protecting drug, an alternative drug etc etc but today's plan is that she just won't have that drug again. I hate that plan. For parents already in a near permanent state of anxiety this was really not good news - we want every drop of every drug of every cycle to go safely in and smash every remaining cancer cell. The longed-for last cycle is now looking like it has lost its super powers and I have lost a little bit more confidence in the future - our oncologist still not around to discuss with but we have booked into her clinic next Friday and I will sit on top of her until she comes up with an alternative or begs for mercy!
So two weeks of methotrexate now and then who knows? But - still adjusting to this news bulletin - the same poor doctor was back within an hour with a wary expression and more positive blood cultures this time from only two days ago by which time the vancomyacin (big daddy of the anti biotic world) was expected to have done its thing and seen off the line infection. It hasn't but with only one cycle to go they are reluctant to take it out and start again so the new plan is that Rose stays in hospital on continual iv vancomyacin till the end of chemo to keep her well, the line usable and the infection from spreading. This news probably had less impact on us than it would have had on families who go home from time to time as staying in hospital is definitely what we know! Took it all in with a bit of ironic humour really - Rose started her journey through cancer with three months on her back in UCH and having had one setback after another it seems surprisingly natural that we should abandon attempts to get her home occasionally and sit it out now. She's so nearly there after what will have been the nine worst months of her life and ours - what's a few more weeks?
So - back to the really important stuff in Rose's life. Who will go home on Strictly and X Factor this weekend, what will we make in the playroom tomorrow (she has been briefed by the play team to design and paint a pin the frog on the lily pad for a party next week ), what else can she add to her Christmas list, how few exercises can she get away with and will she get any more presents over the weekend...She's had a good haul today with a new American Girl doll landed from the States from Jill so it's not all bad by any stretch!
And more fabulous fund-raising efforts for BCRT - this time of a less energetic kind! Proving that lycra is not essential for fund-raising just coffee, cake and boundless generosity Amanda Brown opened her house to a big crowd of cake-buying, charity-giving friends today who between them raised over £1300 in a morning. Only two more weeks till foolhardy fabulous Calvin and Tayo jump out of a plane for a charity they'd never heard of before all this and it's still not too late to support them. If you haven't been conscripted into drinking coffee, making cakes, supporting runs and school fairs and yet you're reading this I don't know where you've been or how you've escaped but please please please put the full weight of your credit card behind them at www.justgiving.com/roseallocca.
