A mother has spoken of how her son narrowly survived a brain tumour that medics discovered only as they looked into a tiny fingernail infection.
Sam Sharp, 39, gave birth to her son in 2020.
Just 11 days later, Joey, from Penicuik, Midlothian, was taken to hospital after he struggled to feed, lost weight and developed jaundice that would not let up.
He also began twitching intermittently.
Doctors investigated a small infection in one of his fingernails and an ultrasound revealed it was a brain tumour causing his symptoms.
Ms Sharp, an orthopaedic nurse, said: “Joey had only been home for a week and we were having visits from the midwife and health visitor every day because his newborn jaundice wasn’t improving, he wasn’t feeding well and he’d started losing weight.
“He was also having tiny spasms while feeding but, at the time, the midwives couldn’t quite work out what was causing them.
“Once we were in hospital, doctors noticed what looked like a tiny infection in one of his fingernails. It was so small, almost like a grain of sand under the nail. We had no idea then that within hours we’d be facing every parent’s worst nightmare.”
Joey underwent three brain surgeries and nine rounds of chemotherapy afterwards, with two operations to remove the tumour, and a third to help alleviate the scar tissue that remained, which had prevented drugs from treating his seizures.
At this point, he suffered from more than 30 epileptic seizures a day, and needed feeding tubes to eat.
He took part in clinical trials to help researchers gain a better understanding of chemotherapy treatment for babies.
Ms Sharp said: “We were told that without surgery that day, Joey was unlikely to survive.
“I can still remember that conversation as though it happened yesterday. Because it was during the Covid pandemic, my husband Steven had already been sent home under the hospital restrictions, so I was sitting there alone with our tiny baby while doctors explained what they’d found.
“As a nurse, I understood enough to know how serious the situation was, but nothing prepares you for hearing words like that about your own child.
“Thankfully, the hospital staff made sure my husband was allowed back in before Joey was taken to theatre. Watching your newborn baby disappear through those theatre doors is something no parent should ever have to experience.”
Specialists, who took samples of the tumour, discovered it was a glioblastoma, an aggressive and incurable form of brain cancer.
But on August 4 2021, towards the end of his treatment, the family received the news they had hoped for.
Ms Sharp said: “Joey was in the children’s day ward receiving his final chemotherapy when our consultant walked over to us. I remember she had tears in her eyes.
“It was an open ward with lots of other families with very sick children around us, so she couldn’t celebrate loudly, but she quietly told us Joey’s latest scan showed no evidence of disease.
“We’d been preparing ourselves to hear that he would probably need more surgery after chemotherapy, so hearing those words was overwhelming. For the first time in months, we felt like we could finally breathe again.”
Now aged five, the youngster has cerebral palsy, with little use of his right hand, wears a leg brace and uses a wheelchair for longer distances.
Despite his circumstances, his mother says he has a love for life, enjoying swimming and spending time with his siblings, eight-year-old Carly and one-year-old Robbie.
He has also started school.
Ms Sharp said: “Joey is our little ray of sunshine. He’s the kindest, funniest and most loving little boy you could ever meet. He fills every room with laughter and never lets anything hold him back.
“Watching him walk through those school gates was incredibly emotional, not just for our family but for the many doctors, nurses and therapists who have supported him since he was only 11 days old.
“He approaches life with so much determination and happiness. The bond he now shares with his sister, Carly, and brother, Robbie, is incredible.”
Ms Sharp called for more investment in brain cancer research from the Scottish Government, with a deadline of 2029.
She has also signed up for the Edinburgh Marathon next year, with donations to go to the Scottish Brain Tumour Research Centre of Excellence in a bid to find a cure for glioblastoma.
Ms Sharp said: “More research means better treatments and, ultimately, more families getting the chance to watch their children grow up.
“I hope the work taking place at the Scottish Centre of Excellence will help improve outcomes for anyone facing this devastating diagnosis in the future.”
Scotland’s Health Secretary Angela Constance said: “My heartfelt wishes go to Ms Sharp for sharing her son Joey’s brave battle to overcome brain cancer.
“The Scottish Government shares their desire to further improve cancer survival and is taking action to improve the awareness and earlier diagnosis of cancers in Scotland. I would encourage anyone with unusual or persistent symptoms to contact their GP practice.
“We published our cancer strategy for Scotland in 2023, with a focus on less survivable cancers, such as brain tumours and improving their outcomes.
“We are also the only nation in the UK to have a dedicated cancer strategy for children and young people, with work under way to renew this.
“We welcome innovation in cancer care and continue to consider emerging evidence on new treatments and technologies to ensure patients can benefit from clinically effective advances.”
Dr Karen Noble, director of research and policy at Brain Tumour Research, said: “No family should have to face the uncertainty Sam and her family experienced when Joey was diagnosed at such a young age.
“We urgently need greater investment in research into childhood brain tumours.”
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