Update 6 - Back at the RMH
Updated: May 26, 2019
Yesterday Esme was re-admitted to the McElwain ward at the Royal Marsden, where we spent five near continuous months in 2018 as in-patients.
For Rebecca and I it's difficult to convey in words what this means... Put frankly, going back onto the ward requires us to re-visit the scene of some of our darkest nightmares but yet remains our only hope of getting Ezzie the vital treatment she needs.
Anyone who's followed our FB posts from 2018 through Esme's initial treatment, or had any exposure to a paediatric oncology ward, will know the mental torture that comes from subjecting your child to the indiscriminate toxicity of high dose chemotherapy, the chronic sleep deprivation and the debilitating ever-present fear that your child will be on the wrong side of a statistical prognosis...but now that we are 24 hours on the inside, we’re hoping the dread of returning will prove to be the worst of it....
Esme's first round of Re-Induction chemotherapy (FLA) started last night and will run over the length of five days, knocking down and suppressing her native blood cell production. This is crucial as we know from last week's biopsy that the leukaemia clones cells already account for 5% of the cells in her bone marrow....
On one final note, we also learnt yesterday from our Consultants that the NHS has turned down their request to make a special exemption for Esme’s funding. This means that we will definitely need to pay privately for the transplant which has made us feel even more privileged and relieved that Esme has such a generous pride of supporters .
With immense gratitude,
Will, Rebecca and Esme xx