A FAMILY have spoken about their experience of travelling 110 miles for treatment following their son’s diagnosis in the hope of raising awareness.

Iwan Wilson, aged one, was diagnosed with a type of kidney cancer known as Wilms’ tumour, when he was just eight months old in November 2018.

Parents Rhiannon Cross and Rob Wilson, of Rhuddlan, faced a round-trip to get their son to hospital in Liverpool following the shock diagnosis.

They are now sharing their story to raise awareness of childhood cancer and its hidden costs as part of Childhood Cancer Awareness Month

Rhiannon said: “Iwan was a placid, happy baby - he was a delight. The week before Iwan was diagnosed he changed drastically.

“At first we put it down to him teething but when things didn’t seem to be improving I phoned my GP who said they would see us when we got home. We came home on the Saturday and ended up in A&E because we had found a lump in Iwan’s tummy. We had no idea of what it could be.”

Rhyl Journal:

Superhero Iwan

Iwan was initially diagnosed with constipation, but over the next 24 hours, his symptoms worsened so they took him to A&E.

Rhiannon said: “The only word to use when your child is diagnosed with cancer is shock.

“We were transferred to Alder Hey in Liverpool for Iwan’s treatment. I think it was on arrival that I realised how serious it all was. They reran all of the tests our local hospital had done and reconfirmed his diagnosis.”

Iwan underwent chemotherapy, followed by a five hour operation to remove the tumour.

Rhiannon said: “On chemotherapy Iwan had some sickness initially, but we quickly learnt how to deal with that. He found it very hard to sleep because the chemotherapy made him itchy, it gave me the impression that it felt like he had ants crawling all over his skin.

Rhyl Journal:

Iwan had to travel to Liverpool for treatment

"Iwan had five weekly sessions of chemotherapy and then surgery. The surgery was successful - they removed his left kidney, lymph nodes and adrenal gland so he is now living with one kidney.

"That period was really tough because our other son was at home with chicken pox and it felt like I had to abandon one child to look after another.”

After the operation, Iwan had another four weeks of chemotherapy.For the treatment in Liverpool and on top of the cost of petrol, the family also had to pay for tolls, hospital car parking and extra food while in hospital.

Rhiannon said: “We had a three hour journey there and back. We worked out that it was at least £30 each day we had to go to the hospital.

“The costs do mount very quickly and it can become quite difficult. When you’re doing that on a weekly basis it adds up quickly but you do what you need to for your child.”

Rhiannon and her family received support from a CLIC Sargent specialist nurse, Elen, and a CLIC Sargent Social Worker, Ffion.

“Elen came to our house often and was able to take bloods so that we didn’t have to go to hospital each time Iwan needed this, said Rhiannon.

Rhyl Journal:

Rhiannon with her baby

“Being able to have care at home and keep us all together meant that we could keep some sense of family normality. Ffion helped us with our finances, she arranged for us to receive a £170 grant as soon as Iwan was diagnosed and also helped with the carer’s allowance and disability living allowance applications.

"I’m a bit of a worrier but I know that I can just text her and she’ll always reply. It’s brilliant to know that there’s someone in your corner all the time.

"Without CLIC Sargent our experience would’ve been dreadful. We would’ve felt completely alone.”

As well as getting to and from hospital, families’ face other added costs when a child is diagnosed with cancer, spending an average of £600 a month extra, on top of everyday expenses and bills. The biggest expenses families face other than travel include food, hospital car parking, energy bills and car-related costs. 

Iwan’s latest scans have shown that he is now cancer-free.

To support CLIC Sargent this Childhood Cancer Awareness Month, readers can purchase a gold ribbon pin badge.

Sophie Meadows, CLIC Sargent Fundraising Engagement Manager for Merseyside and North Wales, said: “When cancer strikes young lives CLIC Sargent fights tirelessly to limit the damage it causes beyond their health.

“I’m calling on the kind people of Denbighshire to get behind CLIC Sargent this Childhood Cancer Awareness Month and wear their pin badge with pride.

"CLIC Sargent receives no government funding so donating will help us to be there for more families who are experiencing debilitating travel costs.”

To obtain a pin badge and find out more about supporting CLIC Sargent this Childhood Cancer Awareness Month, visit www.clicsargent.org.uk/ccam