Danny’s son Callum was diagnosed with acute lymphoblastic leukaemia (ALL) in December 2014, when he was three-months-old. Alongside the devastating news that Callum had cancer, the extra costs of travelling to hospital for treatment and an increase in gas and electric bills at home have been a constant worry for Danny and his wife Natalie. As part of Childhood Cancer Awareness Month, Danny explains:
“The news that our baby boy had cancer was completely devastating. Callum was admitted to Alder Hey Children’s Hospital for treatment, an 80-mile round-trip from our home in Cheshire, and we didn’t come home for the next 40 days.
“Our CLIC Sargent Social Worker Rachel came to see us the week after Callum was diagnosed and introduced herself, she said she would help us however we needed - if we wanted her to. Within the hour we’d said yes.
“Rachel awarded us a CLIC Sargent grant of £170 which helped out with some of the immediate costs that we had due to being away from home. Since then Rachel has been there for us the whole time, and without her support I think our family would have fallen apart emotionally, physically and financially.
“Money has been, and still is, a constant worry for us.”
Costs of cancer
“Rachel sat us down and we went through all of our income and outgoings. Natalie was still on maternity leave from her job as an assistant manager at a pub when Callum was diagnosed, which complicated things a bit, as we were already on a reduced income.
“Initially Rachel thought it would be possible for me to have a career break, but as we had outstanding loans that aren’t classed as essential outgoings, this wasn’t possible. My boss was amazing though. I work in IT support and he let me work remotely.
Helping with the paperwork
“Rachel said that we’d be eligible for Disability Living Allowance, which is a benefit available to families that have sick or disabled children to help them cope financially. Rachel also helped us apply for charity grants that helped us manage the extra costs of travel and other bills. The grants were an absolute lifeline.
“Without the grants CLIC Sargent helped get for us we would not have had electric, gas, or even the diesel we needed to take Callum to hospital. Fuel for the car and travel costs have definitely been our biggest expense.
“Food while he’s been in hospital is another expense. At Alder Hey parents get subsidised meals in the canteen for £2.50, but at the other hospital he’s treated at, a bottle of coke costs £1.50!
“We have to keep the house heated at around 18-20 degrees as he needs to stay warm, any lower and he could get ill, so there’s been a big extra cost there. And being at home much more means that our electric bill has rocketed too.
“In June 2015, six months after the intensive chemo started, Callum had a Minimal Residual Disease (MRD) which came back completely negative! We were so relieved. It meant that the past six months of pumping him full of drugs, of seeing our baby in pain, had shown fruit. The chemotherapy was working. He’s now on maintenance chemotherapy until March 2017.
“When you hear that your child is no longer neutropenic and can go outside it’s like a prison sentence being lifted. It’s like – we can go out! Let’s take the family out to the beach and make the most of it! But everything costs money. It’s hard when you have friends who are going away with their kids in the holidays, and you just can’t.
Costs going up
“Natalie isn’t able to return to work as Callum still needs so much care. So we’ve gone from having two incomes to just my salary and the benefits we receive - the DLA, carer’s allowance, and my tax credits. It is a lot less than we had when we were both working, at a time when all our costs have gone up.
“Every parent knows that you’ll do anything to give your kids the best chance in life possible. But each time you breathe a sigh of relief when you get good news about their treatment, you still have all the money worries and debt hanging over you.
“The support we’ve had has been amazing, a lifeline, but there’s definitely more that could be done to help families with children going through treatment who are struggling financially.”
Incredibly, in-between all of this the whole family has been fundraising for CLIC Sargent so that we can help other families.
Childhood Cancer Awareness Month 2016
This September, during Childhood Cancer Awareness Month, CLIC Sargent is focussing on the financial impact of cancer. It’s vital families can access the financial support they need.