A BEACON OF HOPE

Harriot Cullen was on her way to Dubai for a holiday with her partner, Eddie, and their then seven-month-old son, Ren, in November 2024 when she began to grow concerned for Ren’s health. “A few days into our holiday in Dubai, Ren started to become unwell with symptoms of a chest infection. We arranged for a doctor to come to our hotel room and he prescribed antibiotics. However, Ren continuted to get worse, so we took him to the hospital the doctor recommended where he was diagnosed with double pneumonia and admitted into intensive care. We ended up spending a week there. Before we were due to leave, the doctor did an examination and started focusing on his stomach, then said he could feel a mass there. He said he didn’t know what it was, but it was 7cm, and he thought it should be investigated immediately.

“It was a complete shock, as although Ren had always been a very sicky baby, all the health professionals we saw consistently told us it was a reflux and it was normal. Even after seeing several GPs on multiple occasions. He was otherwise a very happy baby and putting on weight.”

We have private healthcare through work, and once we returned to the UK we wanted Ren to be seen as soon as possible. We contacted our private healthcare provider, who arranged for Ren to see a urologist in Birmingham.”

On 19th December, Ren was taken in for the procedure at Birmingham Children’s Hospital. “He had been in surgery for less than ten minutes when the doctor came out looking for us. He pulled the curtain around us and said, ‘It’s not good news. I’ve found a tumour.’ Eddie and I were in complete disbelief. How had we gone from thinking it was constipation to being told it could be cancer? The doctor explained it was 90 per cent likely to be cancer. We were in complete shock.”
The next day, Ren was given an MRI scan to have a more detailed look at the tumour. Then on Christmas Eve he had a Hickman line fitted. “I don’t think I slept at all over the next few weeks – they were absolute torture. The labs were closed over Christmas so there were two weeks of, ‘We think it is but we’re not 100 per cent sure.’ Ren also developed a temperature on 30 December so was in hospital for five days with another chest infection, which we learnt was because the tumour in his stomach and adrenal glands was pushing his lungs up so they
were working at a reduced capacity.”

At the beginning of January, the family were told Ren had neuroblastoma. “I hadn’t heard of it before, and when you start going down the internet rabbit hole everything is so sad and terrifying.

“With neuroblastoma, the staging is so crucial and that took a bit more time, so we had another awful wait before finding out that, thankfully, Ren only had one tumour that hadn’t spread. However, the tumour was too big for surgery alone, so in mid-January he started chemotherapy for six months to shrink it.”

Ren had six cycles of chemotherapy, with two weeks of recovery between each. “The first cycle was brutal. Nothing can prepare you for that. I think because he hadn’t been ‘ill’, when he had the chemotherapy it then made him really poorly and that was a shock to us. He would be sick a lot and was lethargic, just wanting to be held all the time.”

In August 2025, Ren had surgery to remove the remaining tumour. “The surgery was successful and they removed more than 95 per cent of the tumour. When we saw the scans, they said the chemotherapy had killed whatever was left, so there was no residual cancer.”

Ren has now been in remission for a year. “He will stay until surveillance to check he is cancer-free for the next five years, and because he has had chemotherapy so young he will also be monitored for the rest of his life, as it can affect fertility, puberty and so many other things.”

Since Ren’s recovery, the family has made it their mission to help more families like theirs have happy outcomes. “We always said once Ren got through this if there was anything we could do to make a difference and offer hope to others we would, so in April this year Eddie ran the London marathon and raised just under £30,000 to fund the amazing work of Neuroblastoma UK. We then hosted a charity evening in June with a DJ, raffle and food.

“I came across the charity when Ren was first diagnosed, and I was desperate for information and any sliver of hope. I read more stories of hope on there than I probably did on the rest of the internet and I remember reading my way through them all, trying to see if any other child had experienced similar things to Ren.

“We often as a society turn a blind eye to childhood cancer, as it’s so painful but the awareness the charity raises is important, as often the illness isn’t picked up until children are very poorly or it has spread, because the symptoms are so easily dismissed. The earlier a child is diagnosed the higher the chance of a cure.

“The charity also raises money for research into better treatments and a cure. With the right funding, more lives can be changed. It will mean better survival rates and it will hopefully mean better treatments that are less harsh. So many children are poorly long after treatment has finished, because it’s so intense and aggressive, so research really is key to ensure more children are able to have a normal, happy and healthy life.”

THE CANDIS BIG GIVE AMOUNT RAISED: £18,470

• Neuroblastoma UK facilitates research to find more effective treatments and a cure for every child diagnosed with neuroblastoma, which is an aggressive childhood cancer that usually starts in the tummy area in nerve cells called neuroblasts.
• The money raised in the Candis Big Give will fund research, advancing the charity’s understanding of the disease in order to accelerate drug development and more effective treatments.
• The charity funds a range of research, including looking at modifying certain vaccines. The team that developed the Covid vaccine received money as part of the charity’s 2024 Grant Round and are conducting research to see if they could amend that vaccine to be become a neuroblastoma treatment. A large part of the research the charity funds is also into understanding why neuroblastoma forms in the first place, which is currently unknown.
• Every few years, the charity runs a big Grant Round of applications. Last time it received more than £3 million worth of applications and was able to fund about a third. The money from the Candis Big Give will go towards the charity’s next big Grant Round.
• Visit neuroblastoma.org.uk or call 020 3096 7890 to find out more.