After all the excitement of last weekend a quiet week was called for but it didn't happen...two more birthdays, two more days in hospital, lots more physio and school, and we are all tonight limping to the end of another exhausting five days. Working backwards - today was a full on day at the Marsden seeing oncologist, dietitian, and having the dreaded eight weekly chest x-ray. All fine but the nervous tension and exhaustion got to us all and by the time Rose had waited hours in clinic she had made herself ill with fright and spent the whole consultation on my lap feeling sick with her head buried in my neck - it's harder and harder to go back to the Marsden the longer she spends at home and I think she was genuinely scared that she could be readmitted at any moment.
We wandered through the ward saying hello to the lovely nurses and play specialists who were so key to Rose's life for so long and feeling sick to our shoes to be back - I stood in the doorway of Room 8 where we spent so many back-to-back weeks towards the end and replayed the whole thing in my mind. Awful. Everyone was delighted to see Rose and she found time to make a hat in the playroom and colour endless pictures while we waited to find out which way the rest of our day and lives were turning out this time - I honestly don't think we're ever going to get used to this and we both aged another decade in an afternoon but once the magic words 'chest is clear' were said suddenly the sun came out over Sutton and all was smiles again. We covered lots of other stuff too - the big weigh-in was predictably disappointing and there's no immediate chance of getting the gastrostomy out but we have a new plan to make the overnight feed shorter and try to make her wake up hungry so fingers crossed. A stable 25 kilos with no night feeds is the target to meet before the tube can come out - long way to go! We talked about Rose's immunity, exposure to infection at school, having her vaccinations repeated in a few months time and the risks of infection to her leg. All very serious and grown up but with a clear chest x-ray in the bag no big banana.
Kathy was less impressed with Rose's walking and thinks she may still have to have her leg forcibly straightened under general anaesthetic back at Stanmore to help her weight bear. Ten days after our big moment with no crutches it's all still very tentative, more hopping than walking and her leg is firmly stuck bent at 15 degrees which makes it impossible for her to take proper steps. SO FRUSTRATING!!!!!!!!!!! Back to Stanmore next week for another assessment and to hear what the experts think - meanwhile we plug away with endless rounds of exercises to try to straighten it and the usual nagging her to put weight down, straighten her foot, bend and straighten the knee. God. Poor child.
We'd already had a hospital day earlier in the week back at the Brompton for a repeat heart echo but this went really smoothly - the damage to her heart function that she sustained from the chemo and that we were told was irreparable has mended itself and the echo was normal. I'll always worry that she should have and maybe could have had all the final doses of chemo, that her heart could have taken it, but hindsight is a wonderful thing etc and who knows what would have happened if they'd ploughed on and ignored the echo. All academic now anyway as the time for chemo has hopefully been and gone...Hospital trips however well they turn out are stressful all round and a horrible juxtaposition from the light normality of mornings at school and making birthday cards for Felix and Simon. Rose doesn't really take any of it in her stride although she gives it a good go and she is the bravest child in the world but she does get worried, her life back at home is more precious to her than anyone could possibly understand and she is uneasy at the prospect of hospital visits. They are such a part of her future that I just hope it gets easier. Every week something new falls through the door with her name all over it - she gets more post than all of us!
The rest of her week was more usual - I won't say normal! Lots more physio with varying degrees of success, hydro, swimming, seeing friends, trying to slowly catch up with schoolwork and reading and a couple of dawn raids for birthday present opening for the boys. I'm still with her at school - which probably needs sorting out before the staff (and Rose) get too dependent on me but to be honest whatever works for Rose works for me just now. She finds the whole experience exhausting and draining enough just struggling to keep up with the work without the additional anxiety of what happens when she needs to go to the loo or change rooms and until they can reliably facilitate this I am prepared to stay. Separation anxiety? Just a bit.
So on we go - home or hospital it's one day at a time and enjoying every single minute with Rose...apart from the physio of course...
