Help 2 year old Esme cure her leukaemia

£379,192 of £400,000 goal

Raised by 9,941 people in 3 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

So tomorrow our all-too-brief week at home ends and we head back, once again, to the Royal Marsden.

In the original plan we'd be due to start the Conditioning process (more high intensity chemo to empty the bone marrow) tomorrow ahead of the stem cell transplant on the 12th July. However, if you read our short post from Monday with the results from last week's biopsy you'll know that the first, painful round of chemotherapy didn't hit the target and, in fact, the leukaemic cells in Esme's bone marrow somehow jumped from 8% to 12%.

This was bitter and unexpected news for us to hear. Ever since we fell down the trapdoor marked 'RELAPSE', we've been all too aware that the journey ahead of us will be a rough road but for some reason (maybe because the focus has been on securing this second transplant against all the odds) it's possible we took it for granted that we'd get Esme straight back into remission.

Learning that the disease had actually progressed hit us for six and once again put us back in an all-too familiar place... A horrible, panicky state where you can't sleep, struggle to breathe and eating goes out of the window. Worse, whilst reeling with this news, every interaction with Ezzie feels like some kind of unimaginable torture, heavy with a dramatic irony, whereby everything she does and says seems to clash in our heads with our guilty knowledge that we may well soon lose her.

Through a blur of tears and sobs (Rebecca says I have a habit of crying like a hyena) though, it was clear that our brilliant team at RMH had beginnings of a plan and one that went beyond the word palliative (although this was obviously mentioned).

The challenge we now face is that Esme's leukaemia now gets an 'r/r' annotation on the forums and in the literature, meaning relapsed and 'refractory' (or resistant to treatment). Thankfully, however, there are two possible new drugs that have been tested in the US in this 'salvage' context (a word I truly hate) and have shown good results in getting 'r/r' kids back into remission...

Having spent most of the week sourcing second opinions from across the US and Europe, we met the team today and in rapid time agreed the new plan; from tomorrow Esme will be readmitted to receive a further month-long cycle of therapy with definitely one, and possibly both, of these new agents; whilst tested in ongoing paediatric studies in the US and in use for adults in the UK, they are unlicensed for children so therefore we'll need to fund these privately; all being well, if we can achieve a remission, we'll go as fast as possible into the delayed transplant for which we already have donor and protocol in place.

Monday's news was truly horrific...but the fact we're now looking to do something novel and unprecedented in the UK, 'off piste' as our lead consultant says, whilst scary in its own way, has given us both renewed confidence.

What also helped this week was an unexpected stay at our local care hospital St George's in Tooting on Wednesday night when we rushed Esme in after she woke an hour after bed time with a high temperature. Having to focus on an immediate set of problems, including Esme projectile vomiting mid journey and the fact we were left waiting in the treatment room until midnight for a room, certainly helped us get back into the 'now' and stop obsessing about what might or might not be....

Incidentally, lots of you have written to offer advice since Monday and for obvious reasons we haven't been able to respond but lots of messages have questioned whether CAR-T therapy could be an option for Esme? The reality is that this approach (which involves genetically reengineering T cells to go and take out the bad cells) is indeed an option for ALL (the more common paediatric leukaemia) but less so with AML and, right now, there are no active/open AML CAR-T trials in US / Europe.

Rather, the only curative option remains the second transplant and, thankfully, we have a great donor lined up and as of today a revised plan to get there, albeit with a new hurdle to clear first - but thanks to the astounding generosity of Esme's pride of supporters not only are we getting closer to our target but we've had the funds available to purchase the first drug (the price of a very nice new car!).

Lastly, despite the unexpected trip to St George's thanks catching to my cold, Esme has had a great week, primarily dancing around to the Euro house tune that plays from her new Hatchimole house and enjoying a last trip to the Horniman museum today before return to the ward tomorrow.

Lots of love & massive thanks

Will, Rebecca and Esme x
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Dear GoFundMe supporters of Esme,

After an agonising wait, we found out this morning that the brutal chemo regime Esme endured has not worked... As of last week when she had her bone marrow biopsy there was 12% leukaemia in her marrow. This is an increase on the 8% when we began treatment.

The team at the Marsden are looking into options for us globally, of which there seem to be very few.

Right now we have a lot to absorb and that is our main priority. It is all so surreal as she is incredibly well right now and looks very robust and healthy. However, we may need to up our fundraising goal again. We will keep you posted.

Please keep Esme in your thoughts and prayers. We can't give up on her yet.

Will and Rebecca x
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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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£379,192 of £400,000 goal

Raised by 9,941 people in 3 months
Created April 10, 2019
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