By Leah Fox
A concerned couple claim doctors twice told them their tot’s clinginess with a virus – and only confirmed she had a rare cancer when her dad refused to leave the hospital after discovering a potential diagnosis himself on Google.
Laura Farmer-Maia, 39, and husband Tiago Maia, 40, noticed a change in their three-year-old daughter Beatriz’s behaviour last July, when she suddenly became clingy and unhappy.
They initially believed it was just a phase but after multiple visits to the GP and A&E over several months, doctors allegedly insisted she had a virus and prescribed antibiotics.
But months later, when Beatriz’s symptoms hadn’t improved, the worried parents googled her symptoms and were horrified to discover that the results potentially pointed to neuroblastoma, an aggressive childhood cancer with a 40 per cent chance of long-term survival.
Tiago pushed the GP for more tests, and blood tests showed something was wrong, so Beatriz was sent urgently to hospital.
But in hospital, the family claim a junior doctor still believed Beatriz likely had a virus so Tiago refused to leave until she seen by a specialist – and medics finally discovered a lump above her kidney and diagnosed her with neuroblastoma in September last year.
The parents-of-two, who do not blame the doctors for their mistakes, are now speaking out for the first time to raise awareness of the difficulty of diagnosing cancers in children.
Laura, who works in advertising, said: “Before she was diagnosed, Beatriz was quite naughty but when she reached two, she suddenly became clingy and picky with her food, and had a fever all the time.
“We took her to the GP who believed it was a virus and after recurrent visits they gave her some antibiotics to cover for a potential bacterial cause, which didn’t have any effect.
“Beatriz started to complain that her legs hurt so we took her to A&E, where they did some more tests and still said it might be a virus.
“It’s hard to get a diagnosis right when a child is too young to explain how they’re feeling, but in the back of our minds we knew it was something bad.
“We want to spread awareness of the difficulty of diagnosing cancer in young children – if your child doesn’t seem right, you should push for further tests.”
Tiago, originally from Portugal, added: “I went back to the GP and pushed our doctor for more tests, which showed something was wrong and the GP sent us urgently to hospital.
“At the hospital, they twice said it was likely to be a virus and I refused to leave until I saw a specialist.
“I waited for three hours until a more senior doctor was free, and then Beatriz was examined by different specialists who admitted her to do all kinds of tests and observations including X-rays and ultrasounds – it was the last one that confirmed there was a lump.
“When my fears from Google turned out to be true, it was very strange because even though my life had just flipped upside down, I was almost relieved to be right – it was weird and confusing.”
Beatriz was referred straight to Great Ormond Street Hospital, where they carried out further tests including scans, blood tests and biopsies.
She began chemotherapy just a week after being diagnosed and underwent eight gruelling rounds of chemo over the next 18 months.
Doctors then carried out a stem cell transplant to regenerate bone marrow destroyed by high dose chemo, which meant Beatriz couldn’t leave the hospital for eight weeks.
Tiago, a design director, said: “I was quite scared when Beatriz was diagnosed because my mum and dad had only recently died from cancer – I thought of the worst.
“Everything moved so quickly and we all felt frightened as they carried out the tests.
“Doctors found that the cancer had spread across her body, so she began chemotherapy just weeks after being diagnosed.
“We were told the treatment would last 18 months which was a massive shock to us.
“A week after Beatriz started chemotherapy she massively improved, but it was tricky being in hospital at first.
“Now, she still has periods of discomfort but sometimes she’s happy to be in hospital because she has toys and people to come and play with her.”
Laura, who works in advertising, added: “The stem cell transplant was a hard time for us all because we had to spend a lot of time apart from our other daughter, Clara, six.
“Beatriz was diagnosed in Clara’s first week of school and it was difficult because that was supposed to be an exciting time for her.”
After more scans and hopes of an all-clear, doctors found more metastatic growths still remaining in Beatriz’s head, which meant that the cancer hadn’t fully cleared up and she had relapsed.
The brave youngster is now undergoing immunotherapy and is due to start a six month medical trial on the NHS at Great Ormond Street Hospital, called the Beacon Trial.
It is uncertain whether the trial will work and, even if Beatriz goes into remission, relapse rates are high but her parents are determined to do everything they can to stop the cancer from returning.
Laura and Tiago are now trying to raise £200,000 to help get their daughter into remission or to keep the cancer away if her treatment goes well.
The money is hoped to go towards further treatment, or if Beatriz gets the all-clear, a special vaccine in New York which helps keep the disease away.
Laura said: “After the stem cell transplant, the end was almost in sight but then she relapsed.
“We’re afraid that the cancer will get worse and worse and want to raise money to help get her into remission – the ideal outcome is that the trial works and clears the disease.
“Luckily, compared to other two-year-olds, Beatriz has suffered less side effects with treatment and despite losing her curly hair she’s powering through.”
To donate, go to: www.justgiving.com/campaign/beatriz