Darcey started becoming unwell around five or six weeks before her diagnosis. It began with a couple of weeks of constant viruses and a very high temperature. Then, over time, other symptoms started creeping in, such as extreme fatigue, night sweats, joint pain and bruising. Looking back, there were many signs leading up to her diagnosis that we didn’t relate to anything at the time, but they made much more sense when she was diagnosed.
Because she was so young, Darcey couldn’t tell us how she was feeling, which made things difficult. She’d fallen at nursery and bruised her face, which lasted for nearly three weeks. She used to drop to the floor in agony, clutching her legs, and screamed when we tried to put shoes on her feet. As we got closer to the diagnosis, her stomach became very swollen, and her skin was pale with a yellow/grey tint – she looked very unwell.
For five or six weeks, we visited our GP, walk-in centres, and A&E more than once, to be told it was a virus, constipation, or simply due to her age and that she was building an immune system. We were made to feel like, as first-time parents, we were overreacting. We eventually made another GP appointment, knowing we wanted a referral to a paediatrician. We didn’t know what for, but we knew that something wasn’t right and that we weren’t being listened to.
After a telephone appointment, the GP asked to see Darcey. She took one look at her and was shocked – she contacted our local hospital, and after a review, they asked us to call an ambulance. The fight to be heard wasn’t over, though. Even after a review at our hospital, the doctor said they didn’t see an issue with her stomach or her colour and again told us it was due to her age. We were told that since we were there, they would do a blood test. A quick result run through a machine in the room changed the doctor's face – Darcey’s blood results were dangerously low, and she needed an immediate blood and platelet transfusion.
Darcey’s levels were so low she could have internally bled at any moment, and if she had cut herself, we wouldn’t have been able to stop it – she had almost no platelets to clot her blood. We had no idea what any of this meant, but at 2 am, a doctor came in to tell us his concerns and her blood was sent to Great Ormond Street Hospital. The next day, with a full room of doctors and nurses, we were told our 17-month-old daughter had cancer.
Darcey’s treatment will last over two years. She immediately started six months of frontline treatment with various rounds of different treatments and chemotherapy. She then entered the maintenance phase of treatment, where she has chemotherapy every single day.
We’ve watched Darcey undergo general anaesthesia more times than I can count for treatment and various other things. She’s had numerous hospital stays, both planned and unplanned. Darcey’s nurses and doctors have been so good to us, and they love her just as much as we do.
I don’t think anything can prepare you for your child being diagnosed with cancer, nor can I put it into words – it’s life-changing, and our lives will never be the same again. It’s devastating to watch your child go through treatment and the trauma that comes with it. Cancer has stolen so much from her childhood, and that breaks my heart. As her mum, I’m not sure I’ll ever get over what Darcey has been through, and I think I’ll always carry this immense fear of relapse and the side effects she could face because of her treatment.
Darcey returned to nursery after nine months away and is thriving. Having isolated during frontline treatment, she loved getting back to seeing family and friends – she is so sociable. Darcey is due to complete treatment in December 2024, after which we’ll try to navigate a new normal as a family, without daily chemotherapy and restrictions for Darcey. We’re unbelievably proud of her and will shout that from the rooftops!
Why we need childhood cancer research
Children are resilient, but I’m so fed up with hearing that. That’s why I believe we need to stop using it as an excuse and instead focus on the need for research into all aspects of childhood cancer. It’s absolutely vital that we invest in such research.
As a parent of a child with cancer, I have witnessed first-hand — not just with Darcey, but with many other children and families we have met along our journey — how devastating this disease is. The diagnosis, the treatments, the side effects, relapses, and, unfortunately, the fact that not all children survive their cancer are all aspects that require vital research to make the treatments kinder for our children, prevent relapses and ensure that all children survive their diagnosis. My one wish is that one day we live in a world where cancer does not exist, and we can only get there with funding for research.
CCLG is funding research into all types of childhood cancers to find better, kinder treatments for children facing cancer, just like my daughter, Darcey. Their goal is to ensure that all children survive childhood cancer and go on to lead happy and healthy lives.
Our early diagnosis ChildCancerSmart project aims to prevent referral delays by developing clear evidence-based accredited guidelines for GPs and A&E staff to help them in making quick decisions about cancer referrals.