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  • Will Handley

Update 1 - Back to the RMH for (even) more tests

Hi everyone



Firstly my wife and I wanted to express our immense gratefulness to everyone who’s decided to join Esme’s pride of supporters and drive our total over £40,000 in less than a week.

Secondly, we wanted to drop everybody an update much earlier ...but unfortunately the past 48 hours have been pretty chaotic. In short, we’ve been back on the McElwain ward for two nights since attending Day Care on Wednesday.


We went in for a second bone marrow aspirate under general but Esme suffered some kind of reaction - we think - to the anaesthetic. Pre-op she was charging around the unit like a dervish and then floppy and near comatose for hours afterwards with accelerated breathing.

Worse, Essie’s blood gases were repeatedly off, displaying something scary called acidosis. Esme had two chest x-rays and was monitored by a Consultant Anaethetist all day until her measures miraculously improved by the time we had a bed on the ward.


By Thursday the view had hardened that either Esme had had some kind of reaction or that the anaesthetic had triggered an underlying infection of some kind. So right now our mission becomes getting out from the ward to enjoy as much of Easter as we can at home.

Thereafter it’s back to the original plan; a big meeting with our full consultant team next week to review the more detailed findings of Wednesday’s biopsy and agree the route forward.

Either before or at this meeting we also hope to get more clarity on UK costs and procedure for the self-funded transplant - and will update again with all of this in hand.


Lastly, we promise to write to each and everyone of Esme’s 700 plus contributors individually to express our boundless thanks - but this might not happen for a while!


Happy Easter and lots of love xx

Will, Rebecca and Esme

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