Update 3 - Next Steps
Rebecca and I want to say a huge thank you to everyone that's now helped us raise nearly £160,000 in less than three weeks. Esme's pride of supporters now numbers 4,535 and the GFM page has been shared over 5,8k times.
We've been simply blown away by people's generosity.
We spent yesterday at the Royal Marsden where Esme had an echo cardiogram and an ECG to check her heart function. These are standard tests to assess heart function after chemotherapy but are now equally important to ensure Esme can tolerate further treatment. Esme also had her weekly routine blood tests and the dressing for her Hickman line and feeding tube changed.
We also learnt that the amazing team at the Marsden have submitted an 'Individual Funding Request' to the NHS to try and bypass the 12 month policy ruling. Whilst this would be an amazing turn of events, we have, however, been advised it's 'highly unlikely in the extreme' and not to get hopes up...
On the medical front, earlier in the week we received further confirmation that, although the second bone marrow test was positive, the level of detectible disease hadn't progressed as fast as expected. This had made all parties think we maybe have slightly more than a week to play with before starting treatment...
However, such is this rollercoaster journey, the routine weekly blood test came back in the afternoon showing that Esme's platelet levels (the blood cell that enables blood to clot) have plummeted within a week which can be an early warning for the disease becoming symptomatic
So we find ourselves once again waiting on both the next round of tests and a definitive answer on costs and treatment centre...
Once again, thanks for everyone's amazing support.
Will, Rebecca and Esme x
PS We will now also be posting updates on this FB page: www.facebook.com/esmelionheart