01/09/2016 16:43 BST | Updated 02/09/2016 10:37 BST

This Is What The Parents Of Children With Cancer Want You To Know

'It's a marathon not a sprint.'

September is Childhood Cancer Awareness Month, which aims to raise awareness and highlight the impact of cancer on children, young people and their families.

According to the charity, Children With Cancer UK, 10 children and young people are diagnosed with cancer in the UK every day. 

Now six parents have told The Huffington Post UK what they want other parents to know about having a child with cancer.

You Have To Grapple With New Language

Cate Wilson, whose daughter Edie has been suffering with brain cancer since 2011, told The Huffington Post UK: “Consultants came and went as we grappled with the new language of child oncology. Words such as malignancy, platelets, contrasts and neutrophils became commonplace as we struggled to grasp the enormity of what was happening to our little girl and our family.”

Cate Wilson

You Spend Your Time Reading Medical Journals

Wilson, whose daughter Edie was only six years old when she was diagnosed, said: “Like most cancer parents, I have quickly become an expert on my child’s condition. I have read the medical papers, I know which clinical trials are available and where, I know to look out for the signs of recurrence, the signs of treatment side effects, the signs of infections.

“I am prepared, as I once was not, to make the high stakes, split second decisions on my child’s treatments. I am an expert in battling the system, chasing scans, results, blood test appointments. But even with all this knowledge, it is a frightening, lonely existence.” 

Caring For A Child With Cancer Is A Marathon Not A Sprint

“It was at this point I realised that caring for a child with cancer was a marathon not the sprint I had envisaged. During the course of our time in hospital, I met several other parents. Many of whom had had to give up their jobs and now faced financial hardship as they struggled to pay the bills and care for a child who needed to be on a hospital ward for the foreseeable future and beyond,” said Wilson.

Cate Wilson

You Live With Fear

Wilson said: “As the parent of a child with cancer, you live with fear. The fear the tumour will grow, the fear the consultants will tell you there is nothing more they can do. The fear your child will die. And that is a fear that will last the entirety of Edie’s life. However long that may be.” 

Your Main Concern Is Always Their Health

Danny, whose son Callum was diagnosed in 2014, told CLIC Sargent: “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 of all the extra costs of cancer hanging over you.”


Hospitals Become Your New Normal 

Claire Crowley, who is mum to James, told Children’s Cancer and Leukaemia Group Contact magazine: “After a short while, this new life becomes your normal: the daily blood draw, the doctor’s morning rounds etc. James has always been frightened of ear thermometers, but by day 4 he offered his ear to the nurse.”

Doctors Can Be Frustrating

Jess Lusher’s son Luke, first had symptoms on 10 September 2013, as a toddler, told CLIC Sargent: “I remember that one of the doctors we saw was more concerned about a rash he had on his bum than the symptoms I told them about. They made me feel like it was all my fault, like I was a bad mum, and I got really frustrated.”


You Have To Take Each Day As It Comes

Rachel Lucas, from Kent,  has a four-year-old son Harry who is currently having chemotherapy and she told CLIC Sargent: “My advice for other parents who have just found out their child has cancer would be to take each day as it comes. When you’re first given the news it is easy to get lost and to spiral out of control. In the dark days just get through each day, and tick them off as another day done. Don’t overthink it. Don’t be proud. You can’t do it on your own.”

Facebook Announcements Might Be Unconventional But It Helps

Jane Icke’s daughter Alice is battling childhood cancer, explained to Contact magazine: “After telling our family and close friends, the next place I turned to was Facebook, to share this horrible news in one go (I couldn’t face having the same text/conversation over and over) and to also look for information and support.”