With the predictability of night following day Rose spiked a fever yesterday afternoon a couple of days into chemo and is back on antibiotics waiting for blood cultures to come back from the lab either with or without a growing hickman line infection. But in the meantime she's not allowed anywhere - not that she had anywhere very exciting planned as was going back all day Monday for kidney scans but would have had Tuesday at home before going back for chemo on Wednesday and had even tentatively suggested to school that she might come in for half an hour to say hello to her friends. Now it looks like we will sit it out and segue effortlessly straight into Wednesday's chemo as inpatients.
All getting really boring now - not sure if it's because we've all got colds and feeling slightly sorrier for ourselves than normal but Felix and I are a bit glum tonight. We are at home and have gone way beyond pretending that it's fun watching Strictly and X Factor without Daddy and Rose - this bizarre half life of one family in two places is starting to take a bit of a toll and even a family-sized tin of Quality Street didn't quite do the job tonight! I look back to March now and cannot remember how it felt to be a normal family - the rugby season turned to cricket season and now back again, the days grew longer, longest and now shorter again, the seasons are on their third change and Simon hasn't worked for seven months. Whole terms of school have been and gone, Felix is in his last year of junior school and Rose moved up to Year 2 but in my mind they are both freeze-framed where they were on 21 March. Heartening email from a friend at UCH last night to say just that they had finished all six cycles of chemo yesterday and were on their next step of the journey which I expect is hard too - of getting back to some kind of normal. I wish them so well.
The cumulative effect of one of the chemo drugs is making Rose feel really dreadful so in fact she probably is in the best place as last week we brought her home for three days and she was constantly sick and had a terrible post-chemo headache. With the end of this week she has limped - literally - to the end of her fourth cycle. Four down, two to go. With the infections and the decamping back to Stanmore for rehab on what would otherwise have been a week at home we are back at our old UCH levels of being in patients back to back and I think we are both just very very tired. Extraordinary experiences on so many levels - Simon will probably never have such a long period away from work again in his life and yet we have never been away from each other more. Tag parenting is boring and we seem to stop only long enough to regale each other with either the current domestic crisis going on at home or a quickfire debrief on the daily treatment plan for Rose. On the other hand he's certainly never spent so much quality time with his daughter - in her bid to get his attention I think she may have slightly overdone it...!
The exciting thing this week that has kept us all going is the fundraising for the Bone Cancer Research Trust - between Julia's half marathon and Calvin and Tayo's jump the total is standing tonight at over £8,500 which amazingly has been raised in a week. At the risk of sounding like I am auditioning for BBC Children in Need appeal please please log on to either of their pages and support them - it would be so great to smash their targets and apart from the money raised the moral support for us of friends and colleagues putting their weight behind us is helping us cope.
Tomorrow is another day and Rose may wake up feeling better, not grow cultures and regain some ground over the next few days - either way she's ploughing on like a little trooper and she is as always our amazing Rose.
