In an era of rising inflation and soaring gasoline prices, the cost of cancer imposes a significant emotional and monetary burden.
The last thing on Emma’s mind when her three-year-old son was diagnosed with a brain tumor was money.
Because the tumor is wrapped around his optic nerve and therefore cannot be removed, the kind and sociable toddler will require intermittent treatment for the next 18 years of his life.
Our world came crashing down, and we believed we would never be happy again,” she told.
After 18 months of arduous chemotherapy, the family is now confronted with the harsh reality of coping with Seb’s cancer amid rising living expenses and a steadily diminishing household income.
“Initially, you believe the prognosis to be emotionally devastating, but then it hits you: How are we going to make this work financially?” Emma Grimwood-Bird said.
The cost of childhood cancer
Young Lives Against Cancer estimates that cancer in children and adolescents costs families an additional £730 per month.
Seb is fed through a feeding tube, but is allergic to the hospital’s feed solution; therefore, his family must buy him high-calorie, easily-blended food.
Emma remarked, “I noticed the other day that a cream and salmon dish that used to cost me £8 has increased in price to £9.95.”
“We likely spend an additional £30 to £40 per week on his needs.”
“For the first time, I must remove items from the basket to accommodate the nutritional needs of the rest of the family.
This is something we are happy to do, but have never had to do before.
“How are we going to get by?”
In addition, the family’s mortgage will increase by £300 per month in January, and their power bill has nearly doubled from £120 to £220.
“We are aware that our mortgage will increase in January, but we do not know how this will play out. I believe we are simply burying our heads in the sand and saying, “We’ll manage.”
“However, we are now at the stage where we are wondering how we will manage?”
Even though Seb’s condition is stable at the present, she expressed “constant anxiety” that he may become sicker and that she or her husband may have to quit their jobs to care for him.
Emma has already exhausted her sick leave, so any additional time off will be unpaid.
“I assumed there would be some form of assistance for parents unable to work due to a sick child. However, there is no protection.
“We have made every effort to maintain the support of our employers, but there is only so far they will go.”
They receive £300 per month in disability living allowance, which just about covers the cost of the additional vehicle required to transport Seb to his appointments at the hospital an hour’s drive away.
“I have never considered myself as someone who would receive assistance,” she added.
“However, we did not ask for our son to develop a brain tumor, and as much as you are dealing with the emotional side of it, you must also have conversations about the financial side.”
Rachel Kirby-Rider, chief executive officer of Young Lives vs. Cancer, stated, “We are witnessing the worst cost of living crisis in recent memory, and the young cancer patients and families we support are coping with the uncontrollable costs of cancer in addition to the fear that a cancer diagnosis brings.”
“They are forced to make impossible decisions, such as whether to turn on the heating to keep their child warm or pay for gas to drive to the hospital for treatment; whether to buy the food their child craves while on chemotherapy or a warm coat.”
In addition to providing emotional support, the organization has established a crisis fund that offers cash to families and young people in the greatest need this winter.
Less than one hundred per year
For Katherine Lichten, a resident of Suffolk, this is a familiar tale.
When it was discovered that three-year-old Teddy had a cancerous mass that had spread to his hips, spine, and bone marrow, the family’s “entire world” was turned upside down. Initially, it was believed that Teddy would need surgery for appendicitis.
There are fewer than 100 cases of Teddy’s cancer per year in the United Kingdom, and only forty percent of those diagnosed survive for five years.
Due to infection concerns, the train-obsessed youngster, whose favorite activity is to visit the local train station and observe the locomotives, has been separated from his friends.
Katherine remarked, “He’s very inquisitive, he likes to know what’s going on, and he likes to ask the nurses what the medication is – you can’t get anything past him.”
Unable to resume employment
Katherine was scheduled to return to work in January following her maternity leave for Rupert, the eight-month-old sibling of Teddy.
Due to Teddy’s cancer, however, she will not be able to return until this time next year.
She stated, “My only income is £140 per month in child benefit.”
As their income decreases, their expenses have increased, including their mortgage, which has increased by £200 per month.
“Our food budget has remained the same, but we are getting less and less for our money each week,” she said.
“It is very difficult to go grocery shopping when your child is gravely ill.”
Teddy requires multiple hospital visits, which costs the family £12 per day on public transportation or £30 per trip if they must take a taxi.
The family is raising funds so that he can receive specialized treatment in the United States.
However, due to the weakening of the pound against the dollar, they must raise even more funds to achieve success.
It Never Is You
It’s Never You was founded by Ceri Menai-Davis in response to the lack of support for parents of children diagnosed with cancer.
Hugh, his six-year-old son, died in September of last year from a rare form of cancer.
He stated that parents are forced to rely heavily on charities, including his own, which has an app that offers guidance to those “on the front lines.”
Currently, parents who do not have a certain amount of savings or a job can receive universal credit, disability living allowance, carers allowance, and 18 weeks of unpaid leave taken in four-week increments throughout the year.
“You are constantly battling this waterfall,” he said.
“I’m now on the other side of it – the sad side of it – but the stress of it, and then having no money on top of that, is making it unbearable.
“Because I’ve been there, I know how much everything costs and what you wish to provide for your child.
“The three things we must do to care for our child are to feed, warm, and transport them to the hospital.” And the prices of these three essential components have increased by at least 20%. And for some parents, there is no support, which adds to an already difficult situation.”
