Cost of Living: 'The stress of rising costs and a child with cancer'

Tilly Jones was diagnosed with leukaemia two years ago, aged just four.

Mum Gemma is "so proud" of how her daughter has coped with it, but is finding the financial impact of cancer very stressful.

She has to regularly take Tilly on a 120-mile (193km) round trip from Powys to Cardiff for treatment.

Gemma is also spending more on heating and food, plus treats to cheer up Tilly when she's in hospital.

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The 38-year-old said there have been days when she has been able to feed her four children, aged between six and 16, but has gone without a hot meal herself.

She said the family was "struggling" already with the cost of living, making cutbacks and sometimes relying on help at the local community hub and food bank where she volunteers.

As well as those anxieties, Tilly's leukaemia has also brought added financial pressure as Gemma wants to keep her daughter comfortable and as happy as possible.

"When Tilly's on her medication, she'll eat like a horse," she told BBC Wales Live.

Mum Gemma likes giving Tilly treats to keep her spirits up, especially when she's in hospital

"My fridge has got to be full all the time, my cupboard's got to be full and with gas and electric I'm struggling now with it.

"I put money on the other day and had to top up again on Monday. It's not fair."

Gemma said that during one seven-day stay at hospital in Birmingham she spent about £300 bringing in food and things Tilly wanted like magazines and toys.

"How can you say no to a poorly child?" said Gemma.

"I am getting very stressed. I have epileptic fits most days from stress. It's just hard.

"I just give her love and support and that's all I can do."

Tilly is one of Gemma Jones' four children

Tilly was diagnosed with leukaemia two years ago when she was just four and requires regular hospital trips from their home in Builth Wells, Powys to Cardiff, which is about 64 miles (103km) away.

Such travel has meant big petrol costs.

Gemma is unable to work for health reasons and says the extra costs associated with cancer are "unbelievable".

'More families are worried'

Latest figures show cancer in children accounts for less than 1% of the approximate 375,000 cancer cases diagnosed in the UK every year - with about 1,800 new cases among young people.

Now cancer support charities have said more people are applying for grants to help with costs.

Cancer charity Latch helps families with subsistence, travel, mortgage, rent and household bills. It has also helped Gemma with her mileage costs.

Chief executive, Menai Owen-Jones, said: "Each year we work with around 120 families and last year we gave nearly £300,000 worth of grants to families.

Tilly Jones loves playing and making crafts with her twin sister Isla

"We're definitely seeing an increase in the number of grants we provide.

"Over the last year we've seen an increase of 20% and we are hearing families saying to us they are concerned and worried."

The James family is also dealing with rising costs and caring for three-year-old Griff, who was diagnosed with leukaemia last year.

Grants from the Young Lives Vs Cancer charity has helped but Kathryn James says they were still "watching the pennies".

"I am not expecting to be supported throughout the whole treatment process," said the teacher from Wrexham.

Kathryn James wished she had more guidance for financial support when son Griff was diagnosed with cancer

"However, in that very first instance, during the intensive process where you don't know if you're coming or going, there should be more support there for families to take that worry away."

Macmillan Cancer Support has said families can be eligible for various welfare benefits but Richard Pugh from the charity has said the system can be difficult to navigate.

What financial help is there for families?

• Help from the government towards childcare costs might include a certain amount of free childcare, or some money to help pay for childcare.

• Disability Living Allowance (DLA) for children is a benefit that may help with the extra costs of looking after a child with a disability.

• You may also be eligible for Personal Independence Payment (PIP) and a Carer's Allowance.

• In Scotland, DLA for children is now the Child Disability Payment.

• You may be able to get help with costs for school meals, school clothing and travel, depending on your individual situation and where you live.

* Source: Macmillan Cancer Support

"They've got to worry about cancer as it is," he said. "Let's make the system work for them and let's not make it a reactive system where they've got to go looking for things at the worst possible time."

Macmillan believes cancer diagnosis should automatically "trigger" financial support, rather than people having to apply.

The UK government said it was supporting six million people with a disability or health condition with an extra £150 payment as part of a £37bn support package.

Griff James with mum Kathryn dad Celyn and his baby sister Polly and older brother Floyd.

The Department for Work and Pensions (DWP) said: "We understand how difficult current pressures are for families facing cancer."

"That is why we have put a strong financial support system in place including Disability Living Allowance for children, Universal Credit and Carer's Allowance.

"We urge people to check whether they are receiving all of the benefits to which they are entitled, and to be aware of the wider support this opens up, including help with including help with transport or broadband costs."

• You can see more on this story on Wales Live on BBC One Wales on 30 November at 22:50 GMT or catch up on BBC iPlayer

If you have been affected by any of the issues in this story, the BBC Action Line has links to organisations which can offer support and advice