LIKE any mum, Shirley Hepworth proudly points out her daughter’s colourful drawings.
There’s one of the Queen, which five-year-old Beau sent to Her Majesty and was delighted to receive an official letter of thanks.
And there’s one of New York’s Empire State building, the windows of the famous skyscraper marked out in neat, bright colours.
It is particularly poignant because the family are pinning their hopes on a trip to the Big Apple for potentially life-saving treatment for Beau.
Shirley, 40, said: “Beau has a very rare form of cancer and is at a high risk of relapsing. If she relapses, the outlook is very bleak.
“If we can get her to New York for a medical trial, she and other children like her could have the best chance possible of making it to adulthood.”
In December 2020, when Beau was just four years old and at the end of her first term in school, she started to complain of tummy ache.
Shirley, who is also mum to Redd, 10, said: “As mums do, I had a feel of her tummy, not knowing what I was looking for, and one side was rock hard.
“The doctor initially thought it could be constipation so I treated her for that but three days later, the hardness in her abdomen had turned into a noticeable lump.”
Fearing appendicitis, Shirley rushed Beau to Dewsbury hospital, West Yorkshire, where scans showed a tumour.
Medics then transferred her, by ambulance, to Leeds Children’s Hospital to be seen by a specialist oncologist.
There, Shirley received the devastating news that Beau had Stage 4 high risk neuroblastoma, a rare childhood cancer that at diagnosis only has a 50/50 chance of survival.
Around 100 children are diagnosed with neuroblastoma in the UK every year and the disease has one of the lowest rates of survival of all childhood cancers.
Shirley, from Liversedge, West Yorks, said: “I’d taken her in thinking she would have to have her appendix removed.
“Then, initially, they thought it might be Wilms Tumour, which is a very common, more treatable childhood cancer.
“I was devastated. I didn’t hear anything else, just the word ‘cancer.’
“But to be told it was one of the rarest types, that was horrific.”
Brave girl unable to eat, drink or talk
There was worse to come – the cancer had spread into Beau’s bones.
Shirley said: “She was riddled with it.”
What followed was a year of very aggressive treatment, including an operation to remove the rugby ball-sized tumour, high dose chemotherapy, radiotherapy, a stem cell transplant and immunotherapy.
Beau’s little body was so battered by the treatment that for three months, she was unable to eat, drink or talk, and communicated to Shirley through their own made-up sign language.
Shirley, who has been off from her job in sales since Beau’s diagnosis, said: “She suffered mucositis, which is a common side effect of chemotherapy and meant Beau’s mouth and digestive system were very sore and painful.”
At one point, there was a problem with Beau’s lungs.
When Shirley had to remove Beau’s oxygen mask to lift her from her bed to the toilet next to it, her oxygen levels would drop to such terrifyingly low levels that the little girl would pass out.
Shirley said: “That was a really scary time. I didn’t know if she was ever going to recover.”
Currently, Beau is undergoing immunotherapy, a painful procedure which she describes as “crocodiles chomping on my legs.”
But throughout this incredibly arduous journey, the family has been determined to wake every morning “with a smile.”
Shirley said: “That’s been my philosophy. It might only last five minutes, it might last an hour, but we start each day on a positive note.
“We deal with whatever comes our way and we forget about it when we go to bed.
“Beau has lived by that. She has woken up every morning with a smile on her face. She’s absolutely amazing.”
Before her diagnosis, Beau was a “typical” little girl – sassy, cheeky, with bags of energy.
And she has astounded everyone with her fearlessness.
Shirley said: “I know she’s my daughter and I’m bound to say this, but Beau is the bravest person I know.
“Redd has been an incredible big sister and she has suffered too. When Beau was in isolation in hospital, Redd was without her mum and sister. She could only come up to Leeds and wave at us through the window where we could see her but she couldn’t see us.
“Beau has horrible night terrors, she can be screaming for an hour sometimes, and that will affect Redd too.
“Going through this has really made me realise what’s important in life.”
Race to join vaccine trial
Beau is in the final stage of her treatment now, but she is far from out of the woods.
Her type of neuroblastoma has a high chance of relapse – and should that happen, the odds of surviving are frighteningly small, just one in 10.
It is a risk Shirley simply can not take.
She wants to raise £317,000 for Beau to take part in a cancer vaccine trial at New York’s Memorial Sloan Kettering Cancer Centre.
The aim of the vaccine is for the patient’s immune system to make antibodies to attack any returning cancer cells.
Shirley said: “I would do anything for my child. I will walk to the ends of the Earth to make sure she gets this treatment.
“I couldn’t live with myself if I hadn’t done everything I could to make sure she doesn’t relapse.
“But there’s a bigger picture too. If this trial succeeds, it could become part of frontline treatment in the future, so that the next generation of children won’t have to face that one in 10 survival rate.
“That could be a thing of the past.”
‘The response has been overwhelming’
But the clock is ticking.
Beau needs to start the trial within 45 days of her final scans at the end of April.
And so, on Christmas Eve last year, having put nothing at all about the last year’s struggle on social media, Shirley swallowed her pride and appealed to her local community for help.
The response, she says, was “overwhelming” and in just six weeks, they have raised nearly £200,000 via the neuroblastoma charity, Solving Kids’ Cancer.
People have organised family fun days, a mini festival, sporting events and even a tractor pull.
Last week, 60 schools in the Kirklees area took part in a “Rainbeau” non-uniform day which raised an astonishing £28,000.
Shirley said: “Every day, more and more people come on board to support this campaign.
“Beau and I were in the supermarket one day and the lady behind offered to pay for my shopping, so that I could put the amount I would have spent towards Beau’s fund.
“I’m absolutely speechless by the response and completely humbled.”
Kim Leadbeater, MP for Batley and Spen, is supporting the appeal.
Kim and her late sister Jo Cox, who was murdered when she held the seat in 2016, went to the same school as Shirley, Heckmondwike Grammar School.
She said: “There are lots of amazing people doing amazing things to help.
“The family has captured the hearts of the people across Batley and Spen and that’s really powerful and incredibly moving.
“This community carried me and my parents through the most difficult time in our lives and I hope they can do the same for Shirley.”
For Shirley, she only hopes everyone who has donated their time and money to help Beau knows how grateful she is.
She said: “Quite often people say, ‘I’m sorry it’s only a pound.’
“But it’s the little drops in the ocean that make the waves.”
To find out more about Beau’s appeal, go to www.getbeautosloan.com or join the Facebook group, Beau’s Fight Against Cancer.
