Three-year-old diagnosed with neuroblastoma after severe pain left him unable to walk

A three-year-old boy has been diagnosed with a rare form of cancer after severe pain left him unable to walk.

James Lewis started experiencing stomach and leg pains which was at first diagnosed as Covid after he tested positive for the virus.

He was sent home from the Princess of Wales Hospital in Bridgend, where he seemed to recover, but four weeks later the family returned to hospital due to James being in pain again.

After multiple tests and an MRI scan, the doctors found masses all over James’ body.

He was transferred to Noah’s Ark Children’s Hospital in Cardiff and, on July 1, was diagnosed with neuroblastoma, a rare cancer which affects around 100 children a year in the UK.

His father, Ashley Lewis, 33, and mother Louise Noone, 35, were heartbroken to hear the news. Ashley said: “It’s been hard and absolutely devastating - we’re so worried about his health. It’s been a stressful experience for the whole family, going back and forth to the hospital. It has been hard as we haven’t been able to go out anywhere just in case James catches anything. So we’re missing out on family stuff and time together.”

Ashley added: “At first we felt angry at the situation and I feel it has been harder for my wife as he has been attached to her all through this - he will not leave her side. But we’re trying to keep it positive for the kids and I think it’s easier to be more positive now because of the way he’s reacting to it. You get days when you’re down and days when you’re up but you can’t dwell on it - because there is nothing you can do, you just have to get through it.”

James is currently over halfway through his 80 days of chemotherapy, and Ashley says he’s 'coping well' with treatment. He added: “He’s doing brilliantly with it and you know he’s feeling ok because he’s still running around being a dinosaur. He’s starting to lose his hair now and has the odd tantrum with it, which is understandable as he’s going through a lot, but he’s so far responding well to the chemotherapy.”

After the chemotherapy treatment, James will undergo more MRI scans to see how the masses have responded to the treatment, before having an operation to remove the tumour in his stomach. His parents said that James' treatment will take anywhere between 12 to 18 months, and there's a high chance of relapse in the first two years after treatment.The symptoms of neuroblastoma vary depending on where the cancer is and whether it's spread.

The early symptoms can be vague and hard to spot, and can easily be mistaken for those of more common childhood conditions.

What are the symptoms of neuroblastoma?

• A swollen, painful tummy, sometimes with constipation and difficulty peeing.

• Breathlessness and difficulty swallowing.

• A lump in the neck.

• Blueish lumps in the skin and bruising, particularly around the eyes.

• Weakness in the legs and an unsteady walk, with numbness in the lower body, constipation and difficulty urinating.

• Fatigue, loss of energy, pale skin, loss of appetite and weight loss.

• Bone pain, a limp and general irritability.

• Rarely, jerky eye and muscle movements.

See a GP or contact NHS 111 if you're worried your child might be seriously ill.

Ashley said the support they have received from family and friends has been amazing during such a difficult time. He said his family has been there throughout the process, with Louise's family travelling back and forth from Ireland and taking their daughter, Alice, 6, back with them for two weeks over the summer holiday for a break.

Ashley said he was thankful for the support he has received from his employer and colleagues, who have been able to accommodate his needs and time off for his son’s hospital appointments. He added that the support from local cancer charity LATCH has meant the world to the Lewis family after their world turned upside down.

He said: “LATCH has been amazing with helping us with petrol money from going back and forth to the hospital, setting up accommodation in Noah’s Ark Hospital - allowing us and our daughter to stay overnight. They’ve done so much for us, given us food, helped us with benefits and the emotional support has been amazing as well. For a charity that doesn't get government support - as it’s all funded by public donations - they’re fantastic.”

Despite the hardship the Lewis family have faced, they have decided to fundraise for LATCH in an attempt to give back to the charity after the support they have given the family during this time.

Ashley’s brother, Daniel Lewis, 36, has set up a JustGiving page to raise money for the charity by completing an extreme 24-hour challenge. On October 1, Daniel, Ashley and many others will take part in the Welsh three-peak challenge climbing Snowdon followed by Cadair Idris and then finishing at Pen-y-Fan. They will then cycle 50 miles from Pen-y-Fan to Cardiff, to then run the Cardiff Half Marathon.

Daniel said: “When we found out about James, there was nothing we could do, and it was heart-breaking. Apart from being there for Ashley and his family during this time, you can’t actually do anything and you feel helpless. So I think doing this for LATCH with Ashley is the one thing myself and family can do to help fund LATCH to support other families. It’s a horrible situation and I wouldn’t wish it upon anyone. It’s what my brother and I can give back to LATCH for all the support they’ve given the family.”

He added: “Without these vital services these hard times would become much harder. This is the reason we have decided to take on this challenge and raise money for LATCH so that they can continue to provide families with support throughout these hard and challenging times.”

The 24-hour challenge will take place on October 1, 2022.