Shortly before Toby's second birthday, he fell while playing. We took him to A&E, where doctors diagnosed a ‘toddler fracture’ and placed his leg in a cast for three weeks. After removing the cast, follow-up X-rays revealed a small line on the bone, but doctors dismissed it.
However, Toby would regularly collapse — one moment, he'd be walking, and the next, he'd fall. He struggled to regain balance, especially when turning, leading to more A&E visits, additional X-rays, and eventually, a referral to orthopaedics.
Orthopaedics couldn't understand why Toby kept falling. My instincts told me something was wrong. Then, Toby began sleeping excessively — 18 to 24 hours a day. This was a massive change, as he hadn't slept much as a baby.
We also noticed he looked very pale and bruised easily. For three months, we repeatedly visited our local GP for both scheduled and emergency appointments. Each time, the GP told us Toby had a viral infection.
Things worsened when the left side of Toby's face became very swollen, and his eardrum became completely inflamed and closed. A&E diagnosed it as viral again, prescribed antibiotics, and asked us to wait a week to see if it improved.
During this time, I frequently called my mother in Australia. She was my only support, as I had no local family. I sent her photos of Toby's symptoms — prominent veins on his face, little red spots all over his legs, and bruising everywhere. She urged me to demand an urgent blood test. The next day, I called the GP.
Diagnosis
The GP referred us to an ear, nose, and throat (ENT) specialist, and we secured an appointment that same week. The specialist mentioned that he might need an ultrasound.
I continued booking emergency GP appointments, repeatedly requesting a blood test and voicing my concerns about leukaemia. When I asked why no blood test had been done, the GP explained it would "step on the ENT's toes." The GP told us to wait for the ENT appointment results.
After a week without updates, I walked into the GP's office and demanded a blood test, refusing to leave without it. Reluctantly, the GP agreed, stating that Toby’s appearance hadn't changed, but because I had been so demanding, he referred us to the local hospital.
Doctors performed a blood test on Toby at the hospital and admitted him overnight. Hours later, a paediatric doctor told us it wasn't cancer. However, less than 40 minutes later, she returned to apologise — it was cancer. The news left us in disbelief and angry, but we also felt relieved knowing Toby would finally get the help he needed.
Treatment
Hospital life was difficult for Toby. He struggled with the environment and found comfort in breastfeeding, which became even more important during this time. Due to COVID-19 restrictions, only one parent could stay with him, so I was always by his side. My husband visited daily through the window, bringing snacks and letting Toby's three siblings show their love from outside.
It was a challenging experience, mentally and physically, having to watch Toby manage his chemotherapy treatment and numerous anaesthetics for lumbar punctures. Toby has had over 17 operations before turning five years old. Our journey together will bond us forever, and I will continue to fight for him.
After treatment
Since finishing treatment in May 2023, Toby has worked hard to reintegrate into ‘normal’ life, facing challenges like mobility issues, chronic fatigue, high anxiety, and school absences.
As a family, we now advocate for early cancer diagnosis by raising awareness of the signs and symptoms of cancer in children, emphasising better training and exposure for GPs.
CCLG's early diagnosis Child Cancer Smart project aims to prevent referral delays by developing clear, evidence-based accredited guidelines for GPs and A&E staff to help them make quick decisions about cancer referrals.