Lucien was diagnosed with rhabdomyosarcoma - a cancerous tumour – in May 2015 when he was just two-years-old. Three days after his diagnosis his mum, Stacie, gave birth to his little sister Lara. The extra costs of petrol, food and having to move house due to his illness have been a massive strain on the family finances. As part of Childhood Cancer Awareness Month Stacie explains:
“Watching Lucien go through treatment has been awful. We’ve watched him lose is appetite, lose weight, lose his hair, lose his smile.
“People ask me how I cope – and I don’t really know. Because Lucien and Lara always come first you just have to force yourself out of bed, force yourself to put a smile on your face, and get on with it. My partner Kurt keeps us all together – he works three 12-hour shifts a week and is a brilliant dad.
“When we knew what money was coming in and going out each month we could manage financially, but suddenly life got a lot more expensive."
“The biggest extra cost we’ve had during Lucien’s treatment is definitely petrol. I used to put about £50 in the tank, and it would last a month. But with going back and forth from our home in Rotherham to Sheffield Children’s Hospital all the time, it’s gone up to £300 a month.
“Plus for the first seven weeks of treatment Lucien didn’t have a break from chemotherapy, we pretty much lived in the hospital, and we were paying £8.40 in parking charges for every 24-hours that we were there.
Support from CLIC Sargent
“Our CLIC Sargent Social Worker Judith gave us a lot of support. If we didn’t have her we wouldn’t have been able to keep our heads on straight. When Lucien first went into hospital, she gave us a CLIC Sargent grant of £170 which helped out with fuel and parking costs.
“Judith also let us know that because Lucien was so poorly we’d be eligible for a benefit called Disability Living Allowance (DLA) to help out with all these costs. But you can’t apply for Disability Living Allowance (DLA) for the first three months of treatment. I don’t know why. Until we got the DLA we were in real trouble financially.
“Judith filled out all the forms. She did everything like that – we wouldn’t have had a clue how to do it all. Once you’ve got DLA you can then apply for a Blue Badge so you get free parking, and I could get carer’s allowance, and Judith helped us get that too.
“Buying food and drink at hospital is really expensive too - if you were using a card in the shop you had to spend a minimum of £5. If we were at the hospital for a good few days, Judith would get some money out of CLIC Sargent funds to help us out while we were there.
“Chemo changes how everything tastes, so we are always trying any and every food to get Lucien’s calorie intake up to the right level when he’s at home. I think we must spend at least £400-£500 on food a month, so roughly our food bill has doubled.
Getting the balance right
“Kurt’s employers have been brilliant. When he needs time off they give him paid compassionate leave. Luckily this was nearly same as his usual pay, minus the money from the extra shifts Kurt would have done usually.
“Because Lucien has such low immunity, and couldn’t go to the park or anywhere in case he got an infection, it meant that when he was well enough to come home, he was stuck indoors the whole time, as we didn’t have a garden. Judith was on to the council and sorted it out for us, and in July we moved to a house with a garden. The problem was that we had to pay rent on our old home, and then the new one at the same time.
“That same month there was a mix-up with Kurt’s compassionate leave pay, and he only got £149. So I had to borrow £1,160 from my lovely Nan for the rent and fees, which I’m still paying back in instalments. But it was all worth it for him to be able to play outside.
A day at a time
“Lucien’s been on maintenance chemotherapy since 5 December 2015. That means that we give him oral chemotherapy at home every day then two times a month, for a day each time, he’s back in hospital for chemo through his central line until the end of November. Judith has just retired but CLIC Sargent is still supporting us.”
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.