After the traumatic experience of dealing with her own toddler’s cancer diagnosis, Charley Scott was determined to create a one-stop resource to help other parents…
It’s November 2016 and my husband, Jon, and I are watching Stand Up to Cancer. I say: “Those poor families, I just can’t think of anything worse”. And then… bang. One month later we hear the terrifying words, “It’s cancer”, from the doctor treating our two-year-old daughter, Jess.
Nothing can prepare you for receiving that news. Five days prior to her diagnosis, Jess had a typical toddlers’ cough and snotty nose, which she wasn’t shifting. When her breathing became laboured, A&E doctors thought it was pneumonia. But an x-ray showed a 10.5cm mass in her little lungs.
We were immediately transferred to St George’s Hospital in Tooting, London and were met by wonderful, sympathetic doctors and nurses. I remember them telling us snippets of what was going to happen, talking through the contract we had to sign to allow Jess to have treatment and being handed two sheets of information about T-Cell Non-Hodgkin Lymphoma, Jess’ cancer.
Our minds were in a spin. We wanted more information; answers to all our questions. Yet it was impossible to process what everyone was saying. We went on the internet, but it was filled with horror stories that just sent us into a spiral of doom.
In this new world of trying to understand cancer as parents, Jess was frightened. Her life of nursery, ballet and playdates vanished overnight. Every time the door opened, it was someone to do a blood test, observations, talk to us about a procedure. Every time that door opened, our little girl screamed. Heartbreaking for her, heartbreaking for a parent who wants to fix it and make it go away.
We looked for child-friendly films to show Jess what was going to happen to her before she underwent procedures but we couldn’t find anything easy for her to understand. She just went from one place to another, feeling scared, being put to sleep, woken up, prodded, poked. How you wish as parents that you could swap places.
Jess, left, with Jon, Charley and her sister
Cancer sucks! It’s a horrible journey to be on, full of ups and downs, hope and despair. We’ll always be grateful for the wonderful support shown by our family and friends. And we know we are very lucky that Jess is now aged nine and cancer free. We have just celebrated her five-year anniversary of ringing the bell. I wish every child who has cancer could have that ending.
Jess’ treatment got us thinking. What if there was one place, where all the factual and verified information you need to understand your child’s cancer diagnosis, treatment and procedures, existed? What if there were films and animations, narrated by the children who had experienced cancer to explain what was going to happen, so children in a similar situation could better understand and feel less anxious?
Jon and I felt so passionately about this, we decided to make The Oncology Guide. It’s a first-of-its-kind resource to support families with verified information at the start of their child’s cancer journey. It is totally free for anyone to use and access, anywhere in the UK.
It includes child-friendly films and animations explaining different cancers, common procedures, and treatments, as well as details on incredible charities offering support such as grants, disability badge applications, wigs, and days out.
It took two long years to create the guide, working with incredible partners at King’s College Hospital NHS Trust, who made sure every animation and film is factually correct, and Children’s Cancer Leukaemia Group (CCLG), who wrote all the information. And it wouldn’t have been possible without the generosity of main funder Chartwell Cancer Trust and our developers and design companies, Design Bridge and Partners and Arcade.
Charley and Jon
Jon and I have been TV producers for 20 years, so it felt amazing to put our skills to good use to make these films. And of course, we have had the most unbelievable support from the wonderful children who are featured in the guide. Going back to a place of trauma is extremely difficult and we really appreciate their input and time, and their parents' belief in what we are doing and why.
We launched the guide last September and it has been a whirlwind! We featured in The Guardian in October and on BBC Sunday Morning Live for World Cancer Day in February. I’ve been asked to be a keynote speaker at conferences and the number of people using the guide is growing by the day.
We’ve received emails from medical staff around the country thanking us for making this ‘go to’ resource when speaking with cancer families, and children have told us that they’ve felt less anxious about procedures and treatments because of it. We’re now working on two more versions of the guide, for adults and teenagers.
For something that came from a place of desperation, to help others going through what our family went through, we are so proud of what we have created and hope we can continue to help families facing cancer.
The Oncology Guide features a dedicated section on brain tumours, including symptoms, diagnosis and treatment, as well as sections on procedures and treatments commonly experienced by children who have received a brain tumour diagnosis. Please visit www.theoncologyguide.co.uk
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