A single mother has revealed her struggle to look after her eight-year-old son after he was diagnosed with a terrifying deadly illness — and claims doctors missed the signs.
Victoria Stainton, 45, originally from Lincolnshire, rushed her son, Harrison, to hospital after noticing he was struggling to breathe.
She says medical professionals believed his symptoms were due to constipation at first, but following a chest X-ray spotted a serious problem – his lungs had filled with fluid.
The mother was left distraught after aggressive cancer that left Harrison being fed through a tube meant she had to leave her job to become a full-time carer.
“Even to my untrained eye I could see something was seriously wrong with my son, as you couldn’t define his two lungs on the X-ray,” the mum told NeedToKnow.co.uk.
“Within an hour, Harrison was in theatre having a chest drain inserted and two litres of infected fluid were instantly drained off!
“In total, eight litres of fluid, including blood, were drained off over three weeks.
It was then, in November 2022, they received the horrifying diagnosis of T-Cell Lymphoblastic Lymphoma, fast-growing cancer that showed as a mass in his thorax.
“There are no words to describe how it feels to hear those words as a diagnosis for your beloved child,” said Victoria.
“I felt broken and scared, how can this be happening to him as he'd always been a good child — I was afraid of losing him as he is my whole world.
“I found it hard to process at the beginning.
“When I was told, I just broke down... it felt very surreal like it wasn't really happening. It still feels unreal at times as it's such a long treatment plan.
“But you have to pull up your bootstraps and crack on.”
Initially, following Harrison’s complaints of constipation, his GP prescribed a laxative, but when that didn’t work Victoria became concerned.
She said: “After a day there was still no improvement and I notice his breathing was shallow and he wasn’t able to walk as fast as usual and definitely not as far as usual.
“I decided to call 111 for advice, and after several calls back and forth I took the decision to take him to our urgent care centre.
“By this point, he was very tired and weak and unusually fell asleep waiting to be seen.
“When we got to see the Dr, he referred us to our local hospital, again I mentioned his breathing, but nothing was checked, so off to the local hospital we went and after a 15-minute wait, he was triaged.
“The triage Nurse was our saviour, she listened to what I said about his breathing, lifted up his top and said ‘This is not normal' — He needs a chest X-ray.”
Harrison was then transferred to King's College London Hospital, before arriving at St George’s two days later.
He began treatment immediately, with chemotherapy three times a week, as well as twice-daily blood thinner injections to lessen the chance of blood clots, a chest drain removing eight litres of fluid in total, lumbar punctures and a catheter.
Victoria said: “So far it's been a combination of three different types of chemotherapy that need to be done on three consecutive days, to begin with, then two the next week.
“The first six months are very intensive and once through that, it goes into maintenance phases for the remainder of the three years and three months”
Despite receiving help from her sister, Susannah Matthews, the single mum struggled to fund transport to the hospital, food and heating bills and was forced to leave her job as a learning assistant to care for her son.
The immunocompromised Harrison can’t travel on public transport, and with parking costing £4 an hour, Victoria now has to rely completely on the generosity of others, with one of Harrison’s classmates' Dad’s setting up a GoFundMe page to help.
Harrison is predominantly fed through a nasal-gastric feeding tube, however, when he can eat solid food, Victoria makes sure he is able to eat what he likes, often going without food herself, with chemotherapy affecting his sense of taste.
She said: “Before Harrison was diagnosed, I was working at his school as a learning assistant, obviously I’m no longer able to work whilst caring for him.”
“To my relief though, they have said when Harrison’s better I can return, which is one less thing to worry about for the future.
“I am also spending money on heating at home, as I can’t let him get unnecessarily poorly, so it needs to be on all the time.
“Normally he's in a blanket, but I need to encourage him to move and not stiffen up —he has lost so much muscle already and needs to stay strong to fight his cancer.”
One thing carrying the pair through treatment is Beads of Courage, a programme backed by Children with Cancer UK where children are given coloured beads for each procedure they undergo.
Harrison has now amassed a collection of hundreds of beads, showing off his collection proudly to everyone who visits.
She said: “At the end of each day, before bed, we sit together and tick off what procedures or treatments he’s had that day.
“He definitely holds his head high when explaining them and showing his act of courage beads and also showing visitors his favourites.”
Despite his condition, his cancer will not stop Harrison from fighting for others as he has raised £830 for the Children’s Cancer and Leukaemia group's big play dates by selling pin badges and keyrings to his neighbours.
She added: “Harrison is very grateful to everyone because it means that I can be right beside him through every step of his journey.
“Harrison's heroes, our amazing neighbours, are on standby if we need to go to the hospital.
“I’m so proud of him, we take it each day at a time.
“There have been so many bumps along the road so far, but we’ve made it through and still are because we have the support of some amazing people.”
