When Emma was 8 years old, we went on a family holiday to Egypt. Whilst applying sun lotion, we noticed a rock hard lump in her face, very close to her cheekbone. We dismissed it as a bite and thought no more about it. When we returned home, the lump hadn’t gone and so we took her to the doctor. He was fairly sure she had a blocked saliva gland and recommended a visit to the dentist.
The next day, we took Emma to the dentist who referred us to the Maxillo Facial department at our local hospital the same day. We still didn’t suspect that there was anything to worry about at this point as she was well, very active and in no pain. An ultra sound and MRI were ordered and within two weeks, the consultant at the hospital told us the growth looked encapsulated and that he was 80% sure it was nothing to worry about. He wanted to perform a fine needle aspiration to double check, and still we never thought it was serious.
Two weeks later, we were called back to the hospital and given the devastating news that they suspected cancer. Our world was rocked. How do children get cancer? Was it something we had done? How had this happened? We found out later that 12 families a day are told that their child has cancer. We thought it was rare…
Emma’s care was then transferred to Royal Manchester Children’s Hospital and after a second biopsy, and the fitting of a Hickman Line (wiggly), the results came back that Emma’s diagnosis was Alveolar Rhabdomayosarcoma- a rare, soft tissue cancer. Of the two types, hers was the more responsive to treatment, but the hardest to keep away and she was classed as ‘high risk’.
Chemotherapy started within a few days and Emma’s protocol consisted of 4 drugs: Ifosfomide, Vincristine, Actinomycin and Doxorubicin (a trial drug for this protocol). We were shocked to learn afterwards that all of these drugs were used to treat adults and that very few drugs are ever designed specifically for children!
After four rounds of chemotherapy, Emma had a nine hour operation to remove the remaining cancer tissue from her face. Further chemo was given that week and within six days, we were on a plane to Oklahoma for NHS funded Proton Beam Therapy.
We ‘lived’ in Oklahoma for eight weeks whilst Emma had her treatment, and once we returned to Manchester, Emma had her final two rounds of chemotherapy.
In April 2019, Emma celebrated being five years clear of cancer. We are immensely grateful to our wonderful NHS for their rapid response to her ‘innocuous’ lump and for the care she received during, and after treatment.
Apart from the growth in her face, Emma showed no signs of having a deadly disease. She was fit and well, loved dancing and presented as a normal eight year old child. This is why we never suspected cancer- this is why we share her story, and stories of other cancers- so that other families know what to look for and not ignore the warning signs. We were lucky, Emma’s was detected before any spread which made hers easier to treat.