Update 7 - Esme and her Hospital Pride
Dear GFM supporters of Esme,
Today will be Esme's seventh day back on the ward at Royal Marsden and our little lion cub has now finished her first block of chemotherapy.
It's been a week of very mixed emotions, re-uniting with some old friends and meeting new families at the start of their own journeys.
In the space of six days Esme has had ten shots of high dose chemotherapy, 72 eye drops administered every two hours 24/7 (to prevent conjunctivitis from the chemo), four hours of blood transfusions, broken one lumen on her Hickman line in a middle of the night scare and had one new nasal gastric tube inserted.
In between times, Ezzie has found space to take her 'hospital pride' of 4 lions and a random chimp on a tour of the grounds, confuse us all by nominating a plastic tuna tin in the playroom as her 'pet fish' and 'amuse' the families with whom we share the four patient mini-ward with her constant random chatter about narwhales, dwarfs and ladybirds, plus shouted demands to watch more 'DVEs'.
On a different note we learnt on admission that despite the universal medical consensus of specialists in UK, Europe and US, the NHS will not fund Esme's transplant. On top of this news, the fact that there are still transplant patients on our ward whom we first met back on our first stint...has only reinforced for us the need to keep the amazing fundraising going to get to our revised £400k contingency total.
Lastly, as of yesterday Esme is now fully 'neutropenic' (i.e. the immune system in her blood has been wiped out by the chemo). This means she has no ability to fend off germs - so we’re back to ridiculous levels of hygiene until her bone marrow begins to recover. As any infection can end in a trip to intensive care at St George's, she'll remain in the hospital so they can monitor closely. By mid June, the plan will then be to do another bone marrow assessment to check that the therapy has put us back into remission before more chemo and transplant.
Lots of love,
Will, Rebecca and Esme x