Esme Handley, three, of West Norwood, south London
A three-year-old girl who won housands of online followers as she battled leukaemia died on New Year’s Day, her parents have announced.
Esme Handley was diagnosed when she was just 22 months old after developing a large bruise on a family holiday to Greece.
Her parents Rebecca and Will broke the heart-breaking news on Facebook page Esme Lionheart – so named because of her love of lions.
They said: ‘If you look to the sky tonight you will see a star shining brighter than any other.
‘Our darling girl went onwards with her journey at midday today. She was peaceful and in our arms and knew how ridiculously adored she was.
‘Esme Grace Angela Handley 13.08.2016 – 01.01.2020.’
Rebecca, 38, and Will, 43, faced a battle to try and save their only daughter following her diagnosis.
They discovered she had the high risk acute myeloid leukaemia during a family trip to Greece. After Esme fell over a bruise did not go away, and after Googling her symptoms, both parents became concerned.
Her parents Rebecca (pictured) and Will broke the heart-breaking news on Facebook page Esme Lionheart – so named because of her love of lions
In November, her parents admitted that Esme could no longer expect to be cured and said their child had simply had enough
Rebecca, 38, and Will, 43, faced a battle to try and save their only daughter following her diagnosis
She was taken to hospital in Greece where the diagnosis was confirmed.
Esme was given a stem cell transplant in September 2018 alongside three rounds of chemotherapy but after six months the leukaemia returned in the child’s bone marrow.
The family were not eligible for a second transplant on the NHS and were faced with raising £500,000 privately for the urgent treatment.
In November, her parents admitted that Esme could no longer expect to be cured and said their child had simply had enough.
They said: ‘Since diagnosis we have often spoken about a metaphorical ”sealed envelope” that contains Esme’s fate. Yesterday we got to open that envelope and it was not what we had hoped.
Esme was given a stem cell transplant in September 2018 alongside three rounds of chemotherapy
The parents said: ‘If you look to the sky tonight you will see a star shining brighter than any other’
One parent said she was devastated for the couple and sent them ‘so so so much love and strength’. Another Facebook user said ‘we are all with you and she will be forever in our hearts’
Another user said the post announcing their daughter’s death was one ‘no parent should ever have to write’. Another poignant tribute said: ‘Fly high Esme Lion Heart. No more pain and suffering you beautiful, brave little girl’
One Facebook user said she had nothing else to send but love, while another said she would look into the sky tonight and think of the couple’s late daughter
‘The leukaemia is out of control and there is nothing more which can be done.
‘We have spoken with every single leading paediatric consultant globally, tried all available drugs (some of which aren’t even licensed in kids), explored a ridiculous amount of supplements and complementary medicines, had healing circles far and wide sending prayers…
‘But it’s not been enough. We don’t get to keep our baby.
‘Throughout her treatment Esme has been the epitome of resilience, positivity and cheekiness, and deserves a shot at a permanent cure for life’
‘And to be perfectly honest, even if there was something else they could come up with, right now, I’m not sure we would be able to pursue it. It’s very clear to see that Esme has simply had enough… and who could blame her?
‘Esme thrives when she’s outdoors but all she has known for 18 months is hospitals. The treatment she has had wouldn’t be tolerated by most adults.
‘She has been continually pumped full of drugs; had hundreds of blood transfusions; successfully come through one stem cell transplant; had surgery for three Hickman lines into her heart; had numerous tubes shoved up her nose and drops in her eyes, suffered countless horrendous infections including a type of pneumonia three times; lost her hair; lost her fingernails; vomited daily, had her skin break down, crack, be burnt from chemo; nearly died from sepsis; almost died from anaphylaxis; been blue-lighted to PICU after having a seizure which temporarily left her in a vegetative state thanks to a fungal brain infection… and it goes on.
‘Whilst we would do absolutely anything for her, ANYTHING, I’m also not sure how much more we can tolerate either.’
A month later, they described the heartbreaking cocktail of pain management Esme had to bear to soften her ‘ever-increasing suffering.’
At the time, her parents posted: ‘It’s now three weeks to the day that we learnt that Esme’s story will not have the happy ending we’ve all prayed for, three long weeks in which we’ve had to contemplate the unthinkable and bear witness to Esme’s ever-increasing suffering.
Her parents said: ‘It’s very clear to see that Esme has simply had enough… and who could blame her?’
Now Will and Rebecca, of West Norwood, south London, hope to donate money in Esme’s name
‘In the first couple of weeks one of the biggest difficulties was accepting that the team’s goal was no longer to cure but just to manage pain.
WHAT IS ACUTE MYELOID LEUKAEMIA?
Acute myeloid leukaemia (AML) is a type of blood cancer that starts in young white blood cells in the bone marrow.
AML affects around one in 200 men and one in 255 women in the UK at some point in their lives.
Approximately 19,500 new cases occur every year in the US.
It is most often diagnosed in older people.
Symptoms can include:
- Frequent infections
- Bruising or bleeding easily, including nosebleeds or heavy periods
- Weight loss
- Bone and joint pain
- Swollen abdomen
- Pale skin
AML’s exact cause is unclear, however, risks include:
- Being overweight
- Radiation exposure
- Previous chemotherapy
- Certain blood disorders, such as myelodysplastic syndrome
- Some immune conditions, like rheumatoid arthritis
AML is usually treated via chemotherapy. A bone marrow or stem cell transplant may be required.
Source: Cancer Research UK
‘This sounds obvious but you suddenly find yourself inexplicably sad that the nurses are no longer asking you for Esme’s heart rate or temperature every few hours.
‘At one point I even found myself crying when I bumped into another child being wheeled to theatre and realised Esme will never have another general anaesthetic.
‘Instead, getting ahead of Esme’s pain has become a full-time occupation for us and the team, and Ezzie is now on an ever-escalating daily mix of paracetamol, topical morphine, oxycodone, ketamine and, most recently, methadone.’
They also described how Esme had been bedridden for three months and would never walk again.
But the tot had her own Christmas tree and was even taken out of the Royal Marsden Hospital over the festive period to see Christmas lights in Morden before a screening of Frozen 2 at Everyman Esher.
Now Will and Rebecca, of West Norwood, south London, hope to donate money in Esme’s name. They have already raised £425,000 on GoFundMe.
Rebecca said in November: ‘When we began fundraising we were punchy with our target to ensure we had enough for a self-funded transplant and said that whatever remained would go to the CCLG, the UK’s leading kids cancer charity.
‘Given how desperately poor the funding is into paediatric AML research, we feel even more strongly about this now.
‘So a large chunk of the cash we have remaining (after spending some on novel drugs and supportive care) will be donated to AML research to try and spare future families the pain and anguish we have experienced.’