Phebe Calderwood died after 16 day wait for tumour test - Northern Ireland cancer care must change, say parents
A Co Antrim family whose "kind-hearted and bubbly" 22-year-old daughter died of an aggressive brain tumour have called for a reform of cancer care, after their daughter waited 16 days for a brain biopsy.
Phebe Calderwood from Broughshane, who worked as a carer for adults with learning disabilities at Ballymena's George Sloane Centre, passed away surrounded by her family in hospital on Sunday afternoon.
Nine years earlier, aged just 13, the young woman had overcome a clival chordoma brain tumour with the aid of proton beam therapy.
Phebe then enjoyed several years of good health, and had recently bought a house with her fiance Daniel Murray (25), before her symptoms resurfaced.
Her mum Lynn Wilson (48) told the Belfast Telegraph that Phebe was a "fighter" who could "see the good in everybody".
"She was first diagnosed with clival chordoma at 13-and-a-half after she took a squint in her eye and we took her to the opticians," Lynn recalled.
"She ended up having a CT scan and an MRI scan, and for a while they thought it was a cyst, but then after another MRI it turned out to be a brain tumour.
"That tumour was fast-growing; it grew by 30% in just three months, and Phebe underwent four surgeries at Great Ormond Street Hospital.
"Then she went to Switzerland for proton beam therapy and for many years her health was good."
However, during a trip to Blackpool this May, Phebe began suffering from dizzy spells which culminated in her undergoing two MRIs at the Royal Victoria Hospital.
"No-one got in touch with any results, so we assumed that no news was good news," Lynn said.
"Then she had a second dizzy spell the week before her birthday, and on August 2 we got her an ambulance to Antrim Area Hospital, where she spent 16 days as we were told that there were no beds at the Royal.
"She was transferred to the Royal on August 17 and had a brain biopsy the next day, then a week later she had a biopsy of her spine.
"When we got the results back, they told us there was nothing they could do for us.
"The tumour had got into her brain stem. We have been left wondering if she could have had a fighting chance at survival if she had had the biopsies done sooner."
In the days before her death, Phebe's parents and fiance Daniel say they "lived" in hospital, and received "second-to-none" care when they were transferred to the Macmillan Unit at Antrim Area Hospital.
"She knew that we were there," Lynn said.
"It has been horrendous for the whole family. Phebe was my first child and my only girl, and her brother Saul (8) is devastated, as are her seven half-brothers and sisters.
"She passed away at 1.25pm on Sunday. It wasn't nice listening to her breathing. She was fighting it hard, she didn't want to go, but she had nothing left.
"At the moment I'm just numb. At least Phebe's not suffering any more. We don't want any other family to go through what we have gone through.
"There needs to be reform of cancer care in Northern Ireland to make sure that patients don't have to wait too long."
Daniel, who got engaged to Phebe three years ago, described his late fiancee as "smart, funny and beautiful".
"She was very caring, just amazing," he said. "She loved her job working with adults with learning disabilities and conditions like Alzheimer's. She was big-hearted."
Lynn added that her daughter "never saw the bad in anyone".
"She was more mature than others her age because of what she had been through," she said. "She always saw the light."
The Belfast and Northern Health and Social Care Trusts were not available for comment at the time of going to press.
Phebe's funeral will take place at 1pm tomorrow at St Patrick's Church, Broughshane.