Hello! We have been meaning to get this blog going for weeks and have only been finally pushed into it by the team at UCH and the friends we have made there who want to be able to keep in touch with Rose's progress over the next few months. Big developments this week - what should have been a straightforward final week of chemo back at UCH after Stanmore turned into a more complicated few days of investigations searching for the site of an infection which was turning up in blood samples. After heart echo, ultrasounds, CT scans and even an eye exam it was finally tracked down to a yeast infection in her hickman line which had to be removed in emergency surgery late on Tuesday. Just when we thought things were going to settle down...!
Since we were about to move anyway to the Marsden it then turned into a race between the two hospitals as to who had the earliest theatre slot to put in a new hickman and the Marsden won by 24 hours - so slightly sooner than expected and under slightly different circumstances we said all our goodbyes to the doctors, nurses, teachers, play specialists and friends we have made over the last four months and brought Rose home for the weekend. Mixed feelings about leaving - having only had four days away from there apart from the fortnight for surgery in four months it will be hard to miss it too much! But plenty of bittersweet memories and experiences to look back on and the most incredible care taken of Rose by the huge team of doctors involved in her daily care - special mentions (chosen by Rose) to Dr Maria Michelagnoli for taking every setback confidently in her stride, to Jessie for letting Rose syringe paint the playroom walls from her traction bed and to Maggie for being her all-time favourite nurse! Hopefully we have left Rose's mark - various fundraising events which have included both the children's schools and one of Simon's colleagues running the Helsinki marathon have raised over £5000 so far for the unit.
So it's onwards slightly into the unknown but staying south of the river and back to the original plan of chemotherapy at the Royal Marsden in Sutton - we go on Monday for Rose to have a look at the unit and be seen by the team and then on Tuesday for the operation to have a new hickman and for chemo to begin that night. Hopefully back home next weekend! More soon.
