Every parent will tell you that having a sick child is an unimaginable trauma you wouldn’t wish on anyone.
The prospect of losing a little one is anathema; it goes against the natural order of things.
Yet, tragically for the parents of 60 to 65 children under 16 in Northern Ireland who are diagnosed every year with cancer, this is a grim reality.
When one Co Antrim couple discovered their seven year old daughter had a rare bone cancer, the diagnosis was as earth-shattering as it was sudden and unexpected.
“We noticed Emma limping at her cousin’s birthday party,” mum Petra McNeilly told the Belfast Telegraph.
“It was a beautiful, sunny June afternoon and the kids were jumping in and out of a paddling pool.
“Emma seemed to be dragging her leg. Upon closer inspection, we saw there was some swelling just above her right knee.
“My husband Paul took her to the GP the following day to get it checked.
“Then, a couple of hours later, the doctor called Paul and told him to take Emma to A&E at Antrim Area Hospital.”
After tests, Paul was informed it was “serious” — not the simple muscle injury he’d thought it was.
“Up until that point he hadn’t realised just how grave it was; he wasn’t expecting to be told that it was almost certainly cancer,” Petra said.
Nothing could have prepared them for a routine check-up ending in such devastating news.
Within two weeks it was confirmed that Emma had Ewing Sarcoma, a rare form of bone cancer that affects young people and children, with further tests revealing that it had metastasized [spread] to other areas of her small body.
Chemotherapy began that fortnight — the first of 14 two-week cycles that would run for seven months.
By the end of the third cycle, Emma’s beautiful long blonde hair had gone.
Looking back, that Monday — June 21, 2021 — will always be the axis-changing day that altered a family’s lives forever; the day that draws a blood-red line between the ‘before’ and ‘after’ Emma’s illness.
“From that moment, we were never in doubt about how serious her condition was,” Petra said.
Emma and her dad stayed at Antrim Area Hospital that Monday night, before being sent to the Children’s Hospital in Belfast the following day.
Happening as it did in the middle of the Covid pandemic made this living nightmare even harder, but Emma was admitted immediately because they were told it was “too serious to wait”.
In addition to months of gruelling chemotherapy, Emma’s treatment, which finished shortly after her eighth birthday in January, involved no fewer than 40 sessions of radiotherapy.
She’s happier now that the “really dreadful” part is over, but still shy and terribly sad about losing all her hair.
She has a wig that was specially made for her, but doesn’t wear it, preferring to hide her bald head under a pretty hat instead.
“Emma knows she has a very bad illness — I think she knows it’s called cancer,” Petra said.
“She knows it’s in her leg, in her spine and in her lungs... but I don’t think she has an understanding of its seriousness.
“She knows it’s a fierce illness that’s very difficult to get rid of and she does have questions — like ‘what’s going to happen if we don’t get this under control?’
“I tell her we’ll worry about that if it happens but for now we’re doing everything we can.”
Petra said her three other children, Adam (nine), Daniel (six) and Anna (five), know their sister is sick and “worry that they may have the same illness”.
“Seeing the consequences of the treatment — the burns, her cough — is scary for them but, beyond that, they believe the treatment will make Emma better,” she said.
With daily hospital trips, countless overnight stays and numerous blood transfusions, it has been hard — never-ending and time consuming.
“From the moment you wake up until the moment you go to sleep you’re consumed by it... it’s really hard to keep your worries hidden from the children,” she said.
“The hardest part of having a sick child is seeing them suffer. It’s really difficult.
“And obviously knowing the future is extremely difficult to manage and handle.”
As Emma’s treatment took place during a pandemic, it meant the children with cancer had to be isolated from each other.
“Paul and I weren’t even allowed in the hospital room with Emma at the same time,” Petra recalled.
“Some of the chemo cycles lasted six days and Emma wasn’t allowed to leave the room during it, so the hospital room sometimes felt a bit like a prison to us both.”
She added: “The hospital staff are brilliant. They motivate the children by giving them a unique bead for every procedure they have and then the kids string them all together to make a chain. Emma’s chain currently measures more than 24 feet, reflecting almost 1,000 procedures.”
Helping Emma, and making sure that the other three children are okay, is what has kept Petra and Paul going through the long, dark days.
“You cannot fail your child — that’s the only thing that really matters,” Petra said.
Anger, frustration and desperate sadness are just three of the many emotions the couple feel.
“Even though people say there’s no way we could have noticed that something was wrong with Emma’s leg, we’ll always be angry with ourselves that we didn’t spot it sooner,” Petra said.
“At the moment I do not beat myself up because it’s very destabilising and only brings more suffering. I force myself not to think about it so that I can function.
“But I know that, for the rest of my life, I’ll beat myself up about not noticing the swelling in her leg sooner. It’s something that will never go away.”
She added: “There’s an incredible pain and fear that consumes me; I cannot get away from it. You’re watching your child and hoping for the best and you know that is the only thing that you really have — hope.”
One of the reasons Petra decided to talk publicly about Emma’s illness was to raise awareness of Ewing Sarcoma — as well as to highlight some of the tell-tale signs associated with this type of cancer.
“Not all cancers are the same. Ewing is an horrific cancer,” she said.
“There is an official list of symptoms that should be checked if anyone is searching for guidance but I would advise parents to look out for an unexplained limp, swellings (with heat coming from them) and pains that become very strong during the night and then go away.
“Emma was never in pain. I think everyone finds it very difficult to understand that. Her only symptom was a limp.”
She added: “I want to speak out in case there’s another child in Northern Ireland like Emma out there. This illness gets misdiagnosed a lot so it’s all about early identification. If we’d noticed it earlier.”
Petra is also speaking out is because she feels she owes a debt of gratitude to the charity Angel Wishes, which, for example, took Petra and Emma to see Disney on Ice just before Christmas.
“It is run by a woman called Gaye Kerr who lost two children to cancer related conditions,” she said.
“It was the first time I felt someone really understood. Gaye is amazing. Emotionally, she helped me in a way that no one could up until that point.
“She’s very honest and extremely helpful. That was massive to me. The charity also helped financially.
“Gaye helped me to cope mentally and find strength and positivity. The charity provides emotional support 24 hours a day to anyone who needs it.
“It’s important for people who find themselves in our situation to know there are people like Gaye out there who can help.”
Petra added: “Covid made everything so much worse because of the isolation. It was as if life just stopped.”
Angel Wishes provides financial aid to help parents buy things — such as electronic tablets or crafts — that make hospital stays more bearable for children.
They also give money to the sick child and their siblings at Christmas and organise special outings.
The charity, which also funds trips so that the families of Northern Ireland children who need stem cell transplants in England can go over and visit them, relies entirely on donations.
Petra (41), who works in accounting, and civil servant Paul (43), said they are “beyond thankful” to their respective employers, who have given them time off during Emma’s treatment.
“It costs so much money to be ill; without the support of our employers, I don’t know where we’d be,” said Petra.
The couple are also both grateful to the “magnificent staff” at the Royal Belfast Hospital for Sick Children.
“They are incredible,” said Petra.
“Paul and I will forever be grateful to them for the care Emma received. We would also like to encourage people to give blood. Emma had several transfusions but some of the children with cancer need a litre a week.”
She added: “The only way we could think of giving something back to everyone who has helped us — our work, Angel Wishes and the other charities, the hospital staff — was to tell Emma’s story.”
Emma’s uncle Gareth McCartney and his friend Andy are running a marathon to raise money for Angel Wishes.
Their initial target of £2,620 — £100 for every mile — has already been reached and, thanks to the generosity of local people, they have raised it.
Everyone knows there is a long road ahead.
You can donate to Gareth and Andy’s BigRunForEmma at the 2022 Belfast Marathon JustGiving page