Our baby boy Callum was diagnosed with cancer when he was 3-months-old.
The news was completely devastating and over the past 20 months, my wife Natalie and I have watched Callum go through so much with his treatment. It has been terrifying, and even though he's hopefully now through the worst of it, we never stop worrying about him.
After his health, the second biggest worry we have is making ends meet financially, because of all the extra costs that come with treatment, something you don't immediately think about when you're first told your child has cancer.
But when Callum was diagnosed our living expenses increased a lot. He was treated at a specialist hospital an 80-mile round-trip from our house which saw us spend a lot on travel, parking, and basically living at the hospital without going home, for up to 40 days at a time.
Often his immune system is so low that when he's not in hospital we're in the house a lot, as he's prone to infections that could make him critically ill. The heating has to stay on 24/7 to keep him warm, and our gas and electric bills have rocketed.
I've decided to write about the financial problems we face because we need more people to back the children and young people's cancer support charity CLIC Sargent's new campaign and petition to improve the financial support that's available for parents in our situation.
Their research shows that on average parents are having to find an extra £600 a month when their child is in treatment, and understandably the majority get into a lot of debt as a result.
Natalie was on maternity leave when Callum was diagnosed, and isn't able to return to work as he still needs so much care. So we've gone from having two incomes to just my salary and the benefits we receive - the Disability Living Allowance, 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.
Because our cars were old and unreliable, and under government rules children under three don't qualify for the mobility part of Disability Living Allowance, we had to buy a new one on finance. It costs us a couple of hundred pounds a month that we really can't afford. But we couldn't risk our old cars breaking down on the way to an important appointment, or in an emergency, with a poorly Callum in the back.
Please take a minute to sign the petition and read some of the comments from parents like me who've signed it already, they are utterly heart-breaking. Losing your home and job and getting into debt that will take years to pay off doesn't have to be, and should not be, a side effect of childhood cancer.
CLIC Sargent support as many families like ours as much they can, but they are a charity reliant on donations and there's only so much they can do with the money they have. We need the top people to start taking notice of this issue now.
Callum has responded really well to treatment. In June last year, six months into intensive chemo, he had a Minimal Residual Disease (MRD) test. This test can detect as low as one cancer cell in a million normal cells. We were told that the results would be used to decide whether or not he'd have to go through a bone marrow transplant, and we were really nervous about what it would find.
But thank God it 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 paid off. The chemotherapy was working. We hope that he is now through the worst of it all, but he will be on maintenance chemotherapy until March 2017 and can still get very poorly.
Last month was really difficult. Callum was admitted to hospital three times. It was so scary - he became really ill and we thought the leukaemia might have come back. The consultants had said it was a possible relapse and ordered a bone marrow test to confirm, we waited long arduous weeks for the results. But thank the stars it turned out he had glandular fever instead, which under the microscope can be mistaken for leukaemia.
He's been neutropenic again (that means his immune system is nil), so we've all been at home at lot more. The hospital trips and neutropenia mean that the emergency credit card is out again, and that a couple of regular payments, like my mobile phone bill, have been returned unpaid, so we've been charged by the bank for those. In the meantime our older son Lucas still needs all the things all kids need - like a new school uniform. We have to watch every penny.
When your child is ill your main concern is their health. 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.
Please back the petition and let's hope the people in charge with take more notice and change things, so that in the future thousands of parents like me don't have the added stress of financial problems when all they really want to do is be there 100% for their children.
Sign CLIC Sargent's petition for better financial support for families
Find out more about the Cancer Costs campaign
Donate to CLIC Sargent
Lidl UK has raised £1million for children and young people's cancer support charity CLIC Sargent and is the lead sponsor of Childhood Cancer Awareness Month this September.Suggest a correction