Capri was diagnosed with an Embryonal Tumour with Multilayered Rosettes (ETMR), a rare and highly aggressive form of childhood brain cancer, after her mother noticed her head was tilting
A toddler’s slight head tilt, initially dismissed as a mere ear infection, turned out to be a rare and aggressive brain tumour. One-year-old Capri’s mother, Elissa Hilsden, 30, sought medical advice after a friend noticed the child’s head tilting in photographs.
The health scare occurred just after the youngster celebrated her first birthday, prompting Elissa to seek professional medical assistance. Doctors overlooked a rare brain tumour, instead attributing Capri’s head tilt and cold-like symptoms to a virus and an ear infection.
However, when Elissa later noticed a slight issue with her daughter’s right eye, she hurried back to the hospital for a CT scan. The scan unveiled the ‘horrific’ reality of her daughter’s condition: an Embryonal Tumour with Multilayered Rosettes (ETMR), a rare and highly aggressive form of childhood brain cancer.
Following her diagnosis in November, little Capri has undergone several surgeries to remove the tumour and remains in hospital with her mother Elissa, an engineering teacher, and her father Anthony, 35, an engineer.
The couple, who spent Christmas at Addenbrooke’s Hospital in Cambridge, have initiated a fundraiser to help cover costs between Capri’s chemotherapy sessions. Elissa, from Biggleswade, Bedfordshire, revealed that she first noticed issues with her daughter’s health shortly after her first birthday in November.
She explained: “The week after Capri’s first birthday she had cold-like symptoms which I monitored and put down to her having recently started nursery.
“I did, however, try to get a doctor’s appointment through their online triage service and was told that it was likely viral and would pass.”
However, when a friend expressed concern about the angle of Capri’s head in photographs and videos, Elissa’s worries resurfaced.
She continued: “I received a text from my friend. They said: ‘I hope I don’t overstep here, I’m really sorry if I do… Have you asked anyone about her little head tilt?
‘I noticed it on the weekend and then in the video of her on the swings and the video you just sent… I’m wondering if she has a poorly ear.’”
The concerning message led Elissa to look back through photographs and videos from recent weeks.
She recalled: “I realised that, yes, she did have this little head tilt. I felt so guilty for not having noticed it, but when you see her every day you don’t notice the subtle changes.”
Growing increasingly worried, Capri’s family rushed to Bedford Hospital for urgent care, where medical staff initially thought they’d identified the reason for her head tilt.
Elissa recounted: “They checked her over and they said that she had an ear infection, which was likely the cause of the head tilt. So we had a week of antibiotics.”
Yet during that week, Elissa spotted another troubling change in one of her daughter’s eyes. She continued: “Occasionally, when she would look at me her right eye seemed vacant. It’s difficult to describe, but I just felt looking at it that she wasn’t really staring at me at all.”
After Capri’s symptoms continued following the antibiotics course, her family returned to the hospital.
Elissa explained: “I really just felt that something wasn’t right. I went back to the GP, told them everything about the head tilt and the vacancy of the eye which I’d been unable to capture in a photograph, and we were sent straight to Bedford hospital.”
At the hospital, Capri was finally given a CT scan, which uncovered the devastating reality.
Elissa recalled: “They told us the horrific news that Capri had an extensive brain tumour. It was that moment that everything crumbled.”
Capri was blue-lighted to Addenbrooke’s Hospital, where she underwent a 12-hour brain operation on November 18. However, surgeons could only extract approximately 80 per cent of the tumour.
The tumour was sent away for analysis and, on November 22, doctors confirmed Capri’s ETMR, cautioning that without additional tumour removal, the family might have as few as two months remaining with their daughter.
Capri developed sepsis during her recovery and was rushed to intensive care. Following stabilisation, Capri was transported by ambulance to Alder Hey Children’s Hospital in Liverpool, where surgical teams used an intra-operative MRI scanner to extract additional tumour tissue, which then meant chemotherapy became a viable option.
Capri then returned to Addenbrooke’s Hospital, undergoing a stem cell harvest and additional surgery to insert a shunt, alleviating pressure on her brain. On December 20, she started the first of six intensive chemotherapy cycles.
Elissa and Capri’s father, Anthony, have spent over a month living on the ward, sleeping alongside their daughter and providing care throughout her operations, sepsis battle and recovery period.
The couple also established a fundraising campaign shortly before Christmas, enabling both parents to remain at Capri’s side whilst covering travel expenses and essential home modifications between chemotherapy rounds.
Elissa explained: “We honestly didn’t know how we could afford to be by her bedside through the six rounds of chemo that she needs.”
Despite Capri’s condition, her parents still wanted to create a memorable Christmas experience within the hospital.
Elissa reflected: “We tried to make Christmas special but it’s hard being in the hospital. We just kept it small and got Capri a couple of presents. Addenbrookes have pulled out all the stops, days of activities and nurses dressed up for the festivities.
“[They] helped Santa leave a secret stocking at the end of her bed and presents under the tree. Her favourite present has been a doctors kit given by Oncologist Charlie.
“Of all the things she’s been through, Capri has always been afraid of a stethoscope. Charlie sat and played with Capri and her doctor’s kit until that fear has gone! Care at Addenbrookes goes beyond medicine.”
The couple have already raised £34,000 towards their target of £50,000. To donate, you can click here to visit their fundraising page.
Bedford Hospital has been approached for comment.
