Help 2 year old Esme cure her leukaemia

£334,603 of £400,000 goal

Raised by 9,249 people in 2 months
Created April 10, 2019
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 info@esmelionheart.org



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. 

Please note: upon re-admission to RMH on 20th May our team confirmed that the NHS has turned down their Individual Funding Request (i.e. a request for Esme to be exempted from their policy), meaning that we do indeed have to self-fund Esme’s transplant.
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Hi everyone,

There's a weird thing that happens when you live on a children's cancer ward. Somehow days can take an eternity to pass whereas weeks and months seem to zip past in a complete blur.

Since the start of the week, our third week here, this has rarely felt more true...

From Sunday and across Monday day and night Esme needed intense monitoring, doses of steroids and for us to hold an oxygen mask to her mouth around the clock to get on top of the rasping chest infection that had made her breathing sound like Darth Vadar’s.

The last dose of steroids seemed to have cleared the worst of that infection but made her by turns unspeakably sad or incomprehensibly angry.

Having hauled herself out of the depths of one infection we'd hoped our little lion cub would have a chance to breathe and lick her wounds, but for the last three days the hideous mucositis in her lower digestive tract has taken her truly in its vice-like grip.

Whilst the medical team have experimented with different doses of morphene and paracetamol, Rebecca and I have taken it in turn to hold Esme whilst she writhes and writhes on our chests in agony repeating her pain mantra of 'my bottom is hurting me'.

At times we've been trying to gauge the extent we're successfully managing her pain simply by measuring the intervals between these heart-wrenching pleas which is her only way to articulate her pain. This morning we had a brief interlude of joy when we got our Esme back - still bed-bound but roaring with RaRa, giggling and goofing around - before the pain sucked her back in.

On top of the mucositis, Esme has also been spiking fresh 40-degree plus fevers and convulsing with rigors - so we await more tests blood tests to see if it's a known culprit but for now she remains on two powerful antibiotics and an anti-fungal prophylaxis.

With the above in mind it's no wonder each day here can feel like an eternity... But I guess because we know that the only lasting relief from the mucositis and other infections comes with “count recovery” (and that this sadly might take another 3 weeks), we’re praying the next few weeks really do zip by and are much kinder to Esme.

Lastly, although we’re both feeling fairly broken and demoralised, the fact that thanks to your generosity we’ve raised well over three quarters of our target is a source of really powerful inspiration and support.

Lots of love,

Will, Rebecca and Esme x
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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
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Hi everyone

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
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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
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£334,603 of £400,000 goal

Raised by 9,249 people in 2 months
Created April 10, 2019
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