Couple describe months of trauma after cola-coloured urine in nappy reveals 16-month-old’s two-inch kidney tumour

A mum who found cola-coloured urine in her 16-month-old son’s nappy has said the warning sign may have saved her baby’s life as a two-inch tumour was soon found on his kidney – sparking months of chemotherapy, financial strain and trauma.

Childhood sweethearts Stacie Hart and Ben Martin, both 32, from Morden in south London, faced the “worst time of their lives” after a five-centimetre (two inches) Wilms tumour was found on their son Jaxon’s kidney in October 2023 – a mass which was “a lot larger” than the kidney itself.

Jaxon, now 19 months old, underwent five rounds of chemotherapy before having the tumour and his kidney removed in November – and was given the all-clear two days before Christmas.

But the ordeal has meant Stacie was forced to give up her job as a nanny, which has stretched Ben’s income as an IT technician to breaking point and the couple who have another son, Maximus, three, are now in the red at the end of every month.

They said they feel “so let down” by Government support on offer as they have applied for Disability Living Allowance (DLA) and are yet to receive a penny – but a fundraiser set up by Jaxon’s godmother has raised thousands to help the young family.

Stacie described her one-year-old son Jaxon as a happy boy who talks to everybody and enjoys blowing kisses and kicking a football down the hospital corridor.

“We got the all-clear on Friday before Christmas and everyone said it was a Christmas miracle,” she told PA Real Life.

“These last months cannot compare to anything else we’ve been through.

“I just cannot believe what he has been through and that he’s just taken it on the chin.

“When he goes to bed or has a shower that’s when I’ll have a good cry.

“But when he’s awake and watching we don’t let any of that happen.”

On October 1 2023, Stacie noticed Jaxon, who was 16 months old at the time, had a chesty cough and wheezy chest.

Then, she went to change his nappy and discovered that it was not a number two, but “really dark urine”.

She said: “I thought it’s really difficult to get a face-to-face GP appointment, so I took Jaxon to work and said to my boss who’s a GP, ‘can I show you this nappy?’

“I’ve been a nanny for over 10 years and I’ve never seen a nappy like that, I’m really worried that it’s blood, but he was more concerned about his breathing.”

He recommended Stacie take Jaxon to A&E at St Helier Hospital in Sutton immediately to have his chest and urine checked.

“We were sitting for four-and-a-half hours with a pot under Jaxon waiting for a urine sample because babies don’t pee on command,” she said.

“They were almost going to send us home but then thankfully he weed and it looked as dark as Coca-Cola.”

Jaxon was then taken for an ultrasound scan which revealed a mass on his right kidney.

“It was a lot larger than his kidney was, it measured around five centimetres,” she said.

“In your mind you assume the worst.”

He was diagnosed with a Wilms tumour on October 2, a type of kidney cancer which affects around 80 children in the UK a year, according to Cancer Research UK.

“I didn’t know what a Wilms tumour was, but I knew that they were telling me it was cancer,” she said.

Jaxon was transferred to Great Ormond Street Hospital on October 6, put to sleep and fitted with a Hickman line, a hollow tube placed into a vein in the chest to administer chemotherapy.

“Thank goodness, his body gave us that sign with the urine,” said Stacie.

Three days later he started his first round of chemo.

Doctors initially thought the cancer had spread to his lungs, but further scans confirmed this was not the case.

“That was the worst week of our lives because we didn’t know,” she said.

“We felt constantly sick.”

In total, Jaxon had five rounds of chemotherapy within a month before doctors decided to remove his kidney on November 2, an operation known as a nephrectomy.

Only once the tumour had been removed were they able to determine that the cancer was stage 1.

“They caught it really quickly and thankfully his lymph nodes were clear,” said Stacie.

“For us that was the best possible outcome.”

Jaxon received another four weeks of chemotherapy after his surgery, which is the minimum amount, said Stacie.

Then on December 23, Jaxon was given the all-clear.

“It was the best news ever,” said Stacie.

“It feels like we can breathe again.

“But that feeling of worrying never goes away.”

Unfortunately, the harrowing episode has had a devastating impact on Stacie and Ben – who have been together since they were 15 years old.

“It’s been a massive strain on our whole family,” she said.

“I had to leave my job because I can’t look after someone else’s children and care for my own.

“I can’t return to work because Jaxon is very vulnerable to illness for seven months after chemo.

“And I’m a nanny, so at playgroups I’m around up to 30 children.”

Without a second salary, the couple have been forced to tighten their belts and are still in the red at the end of every month.

“That’s just the harsh reality,” she said.

“I don’t get my hair or nails done, we don’t buy clothes for ourselves – you just have to make it work.

“It wasn’t easy for us anyway but it has now been made impossible.

“Without a doubt we are counting pennies at the end of every month.”

Stacie said she has still not received any Government assistance.

“We applied for DLA in early November and still haven’t received a payment,” she said.

“It’s difficult because we have obviously not chosen for our child to get cancer.

“I’ve not chosen to be out of work and my fiance is working so hard.

“He can’t take a break because financially we risk losing our home and we don’t have family who are in a position to help.

“It makes it much more difficult that we can’t get help.”

The couple are hoping to receive DLA from January onwards and are currently on the waiting list.

“I just feel so let down that I’ve worked since I was 15 years old and paid taxes for a very long time, but yet at a time in life when we really need help, it’s not available to us, it’s not there,” she said.

Jaxon’s godmother Ava Jaeggi has set up a fundraiser on GoFundMe, which has already received more than £5,400 to help them get through this difficult time.

“People don’t realise how much of a difference they have made to our lives whether they have donated a large or small amount,” said Stacie.

“It has made such a huge difference to the pressure that we’re under.”

To support Stacie and Ben visit: www.gofundme.com/f/jaxon-16-months-fighting-cancer

A DWP spokesperson said: “We know the pressures families with sick and disabled children face and a case manager will be looking at this application urgently.

“The three-month qualifying period, which can begin before an application is made, helps to establish care needs and additional costs so we ensure the right support for those who need it most.”

The three-month qualifying period helps establish that the disability and resulting care are long-standing in nature and helps ensure the benefit goes to those for whom it is intended, according to the DWP.

The qualifying period does not begin at the point of application and can be met straight away if evidence showing the criteria has been met for at least three months.