Help 2 year old Esme cure her leukaemia
This is Esme. Esme is 2 years and 7 months old. She loves lions, narwhales and playing hide and seek outside. Right now we have no guarantees she will see her third birthday...
In June 2018 Esme at just 22 months old was diagnosed with high risk acute myeloid leukaemia whilst on holiday. She spent five months as an in-patient at the Royal Marsden, Sutton and received a stem cell transplant in September after three rounds of intense chemotherapy.
After six months of steady recovery, in April we heard the news we've dreaded; the leukaemia has returned to Esme's bone marrow.
We have sought the advice of several leading, global consultants that specialise within high risk AML. They have emphasised heavily that Esme's best chance of cure is a second transplant ASAP.
We are now fundraising to afford this treatment as in all likelihood it will not be available on the NHS. NHS policy is typically not to offer second transplants to patients who relapse within 12 months, but due to the aggressive nature of her disease, Esme simply may not have that long...
In the US and other private centres, second transplants are offered within one year. For her second transplant the plan would be to use an adult (rather than original umbilical cord) donor and manipulate more 'graft versus host effect' to eradicate the leukaemia - so there is every hope for a permanent cure.
Esme's parents, Will and Rebecca, are desperate to save Esme's life. She is their only child and Rebecca suffered 4 miscarriages (and 3 operations, one which nearly killed her) to bring Esme into the world. Throughout all her treatment Esme has been the epitome of resilience, positivity and cheekiness, and deserves a shot at a permanent cure for life.
Unless you wish to specify a donation is solely made for Esme’s benefit, any monies unspent will be donated to The Children's Cancer and Leukaemia Group. If you make a donation specifically for Esme's benefit and for whatever reason we don't require private funds, we will reimburse via the platform.
To read more of Esme's story, click here.
For larger fundraising ideas/ enquiries please contact email@example.com
Please note: we were able to adjust our original target down from £500k to £400k target based on our best and latest understanding of figures shared by the team at the Royal Marsden who on 14th May confirmed that they will allow us to self-fund.
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
Firstly thanks to everybody who's chosen to join Esme's pride of supporters since our last update.
We can't quite believe that thanks to your immense generosity we've been able to raise over a quarter of a million pounds in just over four weeks for our little lion cub’s treatment .
Rebecca and I had really hoped to be in a position to provide a concrete update on the medical plan this weekend but, despite some very lengthy but positive conversations, we lack a firm commitment in writing and as such we’re still effectively in a kind of limbo...
We do though hope to have firm news early next week covering treatment centre, costs and timings...
In the meanwhile, thankfully, Esme has had a fun week tearing round a number of South London parks pursuing her latest passion for discovering insects and building stick piles. These days out are the definition of bitter sweet for us as we’re both haunted by our knowledge of the challenges to come but of course Esme is none the wiser...
Lastly we wanted to thank Esme’s amazing pride of supporters who have organised a huge amount of fundraising initiatives from BBQs, scavenger hunts, stalls at summer fairs and cake sales to golf days, endurance courses and sponsored bike rides. As a reminder, if anyone wants to get hold of Esme Lion Heart t-shirts or posters for an event or discuss a fundraising idea, please email firstname.lastname@example.org
With love and deepest thanks, Will, Rebecca and Esme x
Sent from my iPhone
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
We wanted to post an update first and foremost to thank everybody for their immense generosity and support in taking the figure raised to over £80,000 in just one fortnight.
We saw the team at the Royal Marsden at the end of last week to learn the results of Esme's most recent bone marrow biopsy (...the one from which she had the adverse reaction to the anaesthetic which landed us back on her old ward for three nights).
Sadly, the results have revealed the same as the first; strongly positive for leukaemic cells in marrow. Our lead consultant has indicated he thinks Ezzie will definitely need a round of chemotherapy within the fortnight followed by a transplant ....but beyond that literally everything remains up in the air...
Whilst the Marsden have made positive nosies about taking us on as private patients, the detailed costs are still pending and there's not yet even any agreement in principle, funding notwithstanding.
All of the above as led us to re-double efforts to raise our £500k target and today Esme's story was featured by the Sun Online here:
It wasn't an easy interview for Rebecca to give ...but hopefully it gets the message out. To ensure the article gets maximum exposure, we'd be hugely grateful if any of you feel inclined to share it out on Facebook or Twitter.
Lots of love
Will, Rebecca and Esme x