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  • Will Handley

Update 5 - Confirmation from the Royal Marsden Hospital

Hi everyone

Quarter of a million pounds within 4 weeks!!! Thank you so very much for everything you have done to help us reach this huge milestone.

As of today, we now have written confirmation that the team at The Royal Marsden, regardless of whether the NHS u-turn on their funding decision, will at the very least take Esme as a private patient. This was our preferred destination all along, not least for continuity of care and means the sense of limbo we've experienced for 6 long weeks is at an end.

As a a consequence, we are today amending our Go Fund Me target down to £400k which reflects our latest and best understanding of the private funding required (which still though has far more 'how long is a piece of string?' to it than we'd like....)

Broadly speaking, the £400k comprises an upfront £200k deposit requirement comprising a £150k package for the transplant 'care episode’ based on 42 nights and £50k for donor logistics. This is the figure we need to pay down in advance of transplant conditioning and happily thanks to your generosity we are already there.

However, such is the challenging nature of second stem cell transplants, that we have also been strongly advised to raise a further £200k as contingency. This covers for un-funded medicines in event of some potential but common complications, additional consultant or surgeon fees, prolonged hospital stay at Marsden beyond the 42 day package and a provision for ITU referral (where a bed can cost c. £4k per night) amongst a bunch of other things....

Across this week we have more tests to do and wait on, including putting Esme through another general anaesthetic for a bone marrow biopsy tomorrow to continue to assess how fast disease is progressing.

Once again, thanks for everyone's amazing support; your kind messages, donations and fundraising efforts are giving us so much strength to keep going.

Will, Rebecca and Esme x

PS The pic is Esme yesterday at Battersea Zoo & quick reminder we will now be posting more detailed updates on this FB page: www.facebook.com/esmelionheart