Mums shares the tiny sign she spotted that led to her son’s devastating cancer diagnosis
A MUM has revealed how her boy was devastatingly diagnosed with cancer after she noticed he was losing weight.
Doctors realised Sebastian Nunney, six, had neuroblastoma when he was three, months after he first complained of an earache.
His mum Lindsay, 41, from Kettering, Northamptonshire, spotted his weight was plummeting but her GP initially dismissed it as an ear infection in April 2020, she said.
It was only in July of that year, when she and dad Gregg rushed him to hospital because he became dangerously weak, that scans revealed the crushing news that left them “numb”.
Gregg, 43, an English teacher, said: “At the very beginning he was very sick.
“One Friday we were told by the nurses that we were allowed to be together at his bedside — even though Covid restrictions said we couldn’t — ‘to make things more manageable’.
“But we were told afterwards it’s because they didn’t expect him to make it through the weekend.”
Around 100 children are diagnosed with neuroblastoma in the UK every year, with under-fives mostly affected.
Tumours develop from specialised nerve cells called neuroblasts that are left behind from baby’s development in the womb.
The disease usually occurs in the kidneys or spinal cord and can spread to other organs, including the lymph nodes, liver and skin.
Symptoms include a lump in the tummy that can make it swell, causing discomfort or pain, as well as blue black coloured skin it has spread.
Children can also suffer numbness, weakness, loss of movement in the lower part of the body, breathlessness and difficulty breathing.
But in Sebastian’s case, his GP missed the disease initially, with earache not a common symptom.
The family have since complained about the doctor and she was ordered to undergo further training following an investigation by the General Medical Council.
Lindsay said: “I was with Sebastian, he was clearly in pain and didn’t want to be examined.
“It was at the peak of Covid so the GP had full PPE on and I got the impression she wanted us out of there as quickly as possible.
“At the time, doctors did not want to do face-to-face consultations but we really pushed for it because Sebastian had lost a lot of weight.
“I even showed her photographs of Sebastian just a few weeks earlier to try and show her how much weight he had lost.
“The doctor actually said it could be an ear infection because there was some inflammation in the ear.
“She read in the notes there had been a referral to see a paediatrician because Sebastian could be on the autism spectrum and she said ‘oh yes I see there might be some behavioural problems’.”
Weeks later, his parents took him to hospital after he became increasingly weak and tests showed his oxygen levels were dangerously low.
He had an X-ray which showed a large mass in his chest and further tests revealed he had neuroblastoma, a rare cancer that mostly affects babies and children.
He was rushed to the Queen’s Medical Centre in Nottingham and placed on a ventilator and underwent a tracheostomy so a tube could be inserted into his windpipe.
They took turns by his bedside, where a heavily sedated Sebastian was started on a gruelling 80-day chemotherapy programme.
Gregg said: “He looked like Doctor Octopus with all these tubes and wires. Nobody thought he was coming out of PICU.
“They took us to the room of doom again and said, ‘he’s never coming out’. We were just numb at that moment.”
Despite the odds being stacked against Sebastian, the brave youngster battled back and his tumour shrunk so much that doctors hailed it a “miracle”.
But earlier this year, doctors discovered a cancerous growth in his leg and blood tests revealed the disease may have returned.
Gregg said: “At the end of May Sebastian was still suffering – he was sore and tired – very upset and falling asleep at school, refusing to eat.
“It felt very much like his symptoms when he was first diagnosed.
“We were reassured that this was just his response to the radiotherapy, that he was just fed up after three years of treatment, and to just let him rest.
“He was in so much pain he just wanted to sleep and cry all the time.
“An MRI scan on June 20 showed abnormal tumours in his pelvis, the base of his skull and the soft tissue around his eyes.
“At the point we got the results, we were basically told that there isn’t much hope now and we will try and find something to manage his pain.
“Our consultant said we’re running out of options in terms of quality of life over treatment.”
While undergoing treatment on the NHS, the family have launched an appeal to raise £200,000 to send Sebastian abroad for potentially life-saving therapy.
One of the therapies the couple are looking into is CAR-T cell therapy which is available in Italy and America.
It works by collecting a patient’s white blood cells, editing them in a lab to seek and destroy tumour cells, then injecting them back into the body.
To donate to Sebastian’s GoFundMe visit https://www.gofundme.com/f/teamseb.