Our Bonnie’s ‘broken arm’ turned out to be killer cancer – now she has less than a year to live, she’s only 5
FIVE-year-old Bonnie Spence has been given less than a year to live after doctors mistook her deadly cancer as a ‘broken arm’.
“Not in our wildest nightmares would we have thought we’d be in this position,” her dad Iain, 41, said.
The little girl from Oswaldtwistle, Lancashire, was left in excruciating pain because of the lump on her arm.
Initially, her mum Zoe, 30, thought might have been a break.
Doctors in the area agreed, putting the lump down to a possible sprain, and sent the tot home with her arm in a sling.
However, Bonnie’s arm kept on swelling – leaving her in even more agony.
Two months later, after several hospital appointments in Lancashire, mum Zoe decided to drive her daughter three-and-a-half hours to Newcastle, near her father’s home.
“Bonnie was rolling around in pain,” Iain said.
They decided to take her to the Royal Victoria Hospital, where Iain said doctors took one look at her and knew she had a tumour.
Bonnie was diagnosed with stage four rhabdoid sarcoma in February, a rare and aggressive form of childhood cancer.
According to doctors, the pressure on Bonnie’s arm had become so bad that it led to compartment syndrome, an increase in pressure inside a muscle, which restricts blood flow and causes pain.
Just five days after her diagnosis, her parents had to make the difficult decision to allow doctors to amputate the youngster’s left arm.
Now doctors predict the five-year-old has less than a year to live, with the cancer having spread to her lungs.
Zoe said: “In the space of nine weeks, it went from a suspected broken arm to now terminal cancer with only a year given.
“This news absolutely shattered my whole world.
“She’s on chemotherapy to prolong her life, but we have been told the chemotherapy will stop working around the 28-week mark, and we will have no other options left.”
The mum of five now faces expensive three-and-a-half hour long trips to see her daughter.
Bonnie remains with her father in Newcastle, though it is not clear why.
HGV driver dad Iain and NHS midwife stepmum Caroline are off while while they spend time with Bonnie as she faces her final months.
Iain is only on £118.75 per week statutory sick pay and Caroline’s occupational sick pay runs out in October, meaning they could face the difficult decision to return to work while Bonnie is still at home.
Iain said: “It’s not the most ideal situation with her mother being over there – she’s never been away from her mum.
“Everyone understands that unfortunately this is the best way to do it.
“Her mum’s trying to get over as much as she can, and we’re trying to do the best as we can for her as well.”
‘Just a lump on the arm’
Stepmum Caroline, 32, said: “She’s having to pay for caravan parks and Airbnbs to stay in, and because of Bonnie’s needs they need to be adapted that can fit the wheelchair with one arm and things like that.
“That increases the cost of Airbnbs that are available to her.”
Iain added that he hopes Bonnie’s case raises awareness of rhabdoid sarcoma.
He said: “It just presented as a lump on the arm.”
Bonnie’s dad has launched a GoFundMe to cover his living costs and expenses.
Meanwhile, her mum, Zoe has also launched a GoFundMe for travel and days out.
Collectively, the fundraisers have raised over £25,000 at the time of writing.
What is rhabdoid sarcoma?
Rhabdoid sarcoma, also known as malignant rhabdoid tumour (MRT), is an extremely rare and aggressive type of cancer.
It most often starts in the kidneys but can also form in soft tissues anywhere in the body, including the brain, where it’s called an atypical teratoid/rhabdoid tumour (ATRT).
It’s caused by changes in a specific gene that usually helps control cell growth.
Who gets it?
Rhabdoid tumours mainly affect very young children, usually under the age of five.
In rare cases, it can also occur in older children and adults, but this is uncommon. It’s slightly more common in boys than girls.
Symptoms
Symptoms vary depending on where the tumour is located. In the kidneys, signs may include blood in the urine, a swollen tummy, or a lump that can be felt.
If the tumour is in the brain, it may cause vomiting, headaches, changes in behaviour, or problems with balance and coordination.
In other soft tissue areas, it might appear as a fast-growing lump, sometimes painful.
Because rhabdoid tumours grow quickly, symptoms often develop rapidly and may worsen over days or weeks.
UK facts
Rhabdoid sarcoma is very rare, with only a small number of cases diagnosed in the UK each year.
It accounts for a tiny fraction of childhood cancers but is one of the most aggressive.
Early diagnosis and treatment are crucial, though outcomes can still be challenging due to how fast the cancer can spread.
Research into more effective treatments is ongoing, and children with this diagnosis are usually treated at specialist cancer centres.
Source: NHS + Sarcoma UK