Surviving cancer should not mean debt, Cornish family says

A family who spent months living away from home for their son’s specialist cancer treatment says others should not face going into debt to ensure their child survives.

Three-year-old Jonah was diagnosed with stage four neuroblastoma but his parents could not work while he underwent life-saving treatment in Bristol, about 170 miles (274km) from their home in Camborne, Cornwall.

Young Lives vs Cancer, which housed the Rowes near the hospital, called for a £10m government fund to help families with the costs of treatment such as travel.

The Department for Health and Social Care said it would ensure the “needs of young cancer patients are reflected in the forthcoming National Cancer Plan”.

Jonah’s symptoms began in February with tummy pain, a limp and loss of appetite. His parents took him to the Royal Cornwall Hospital, Truro, where an MRI scan showed lesions in his pelvis.

The family went to Bristol for immediate specialist treatment, where Jonah was diagnosed with stage four neuroblastoma, cancer of the nerve tissue.

While he underwent intensive chemotherapy and surgery to remove a tumour around his aorta, the family did not return home for eight months.

Deborah said she held Jonah on her lap before the seven-and-a-half-hour operation.

She said: “I kissed him on his head before we left and walking out that door it’s really hard to stay positive and I was thinking, ‘Is he going to make it?’.”

Jonah’s parents were unable to work while they stayed with him, which hit their finances.

Deborah’s brother, Max Young, set up a crowdfunding page to help cover costs such as living expenses and bills and they stayed at “Sam’s House” – free accommodation for the families of children with cancer run by Young Lives vs Cancer.

The charity is lobbying the government to create a £10m fund to support families of children who have a cancer diagnosis and face additional costs such as travel, accommodation, additional heating or laundry.

Helen Gravestock, the charity’s director of policy, communications and voice, said: “Families do get into debt because of cancer treatment.

“That’s something that Young Lives vs Cancer doesn’t think it is right or fair and we are really working hard to try and change that.”

Gregory, Jonah’s father, said: “I don’t think anybody should have a debt for their child to survive.”

Deborah said she spoke to other families facing cancer who had “used everything”, including selling their houses and exhausting their savings, adding some parents did not want to use a crowdfunding page because they were “too proud” and it felt like “begging”.

“I just thought it was really sad to think about selling your house to keep your child alive,” she said.

She said they were “losing lots of money” while they were unable to work.

“I just don’t know what we would have done without the donations from everybody,” she said.

“I don’t know how we would have coped, but the only thing I can say is because of everybody’s generosity we’ve been able to concentrate on Jonah.”

A Department of Health and Social Care spokesperson said: “Our thoughts are with Jonah and his loved ones during this difficult time.

“We know there is more to be done to improve outcomes and experience of care for children, teenagers and young adults with cancer.

“That’s why we have launched the Children and Young People Cancer Taskforce.

“We will ensure the findings of the taskforce and needs of young cancer patients are reflected in the forthcoming National Cancer Plan.”

The spokesperson said the NHS in England ran the Healthcare Travel Costs Scheme providing financial assistance for travel to patients who qualify and other help is available for those on a low income through Universal Credit or Personal Independence Payment.

Jonah has responded well to chemotherapy and the surgery was successful.

However, he has months of immunotherapy ahead and his treatment is not expected to conclude until September 2026.

Once Jonah’s treatment is complete, he will be monitored with scans throughout his childhood.

Deborah said: “I look back and I don’t actually know how we’ve got through the last eight months.

“It’s really hard… it’s not knowing. It’s a waiting game now. We’re going to be hoping that all those scans come back clear.”