Ellis’ symptoms starting with a swelling just above his left knee that worsened at night and he developed a slight limp. We took him to a minor injuries unit twice and we were told it was growing pains. We knew it was more than growing pains, so I rang his GP to get him an appointment. The receptionist told me the wait for an appointment was currently 2-3 weeks unless it was an emergency. I did what I think any Mum would do and said I wanted him to be seen urgently that day.
He couldn’t go to school; he couldn’t weight bear and the pain was at its worst at night. I knew he needed to be checked out.
He had an X-ray after the GP appointment which was then followed by a phone call from his GP at 8am the next morning, saying he was being referred to the London Sarcoma Service. This was the day our lives changed. From then on, it all went so quickly. Within a month, he had had a biopsy (on Christmas Eve), CT scans, MRI scans, blood tests, numerous pre-chemo tests, and then started his chemotherapy January 2020.
Ellis underwent limb salvage surgery in March 2020 and his chemotherapy continued until August 2020. In September, the latest results have showed no evidence of the disease.
Ellis also contracted COVID-19 and sepsis during chemotherapy in July 2020, which was terrifying. But this year has brought us closer together. He has had some very adult conversations about fertility and an operation to preserve his sperm. At 12 years old, it was so scary. But he is incredible!
Ellis has been incredibly resilient. He was walking upstairs 4 days after his limb salvage surgery and riding his bike after 9 weeks. He is now back at school like nothing has happened.
His strength has come from all the support his family and friends have offered him. The nurses and team at University College London Hospital, T11 North became family to us both.
My advice to others is to not be afraid to ask for help or support. Admit when you are struggling, there are no prizes for soldiering on. Get some counselling to help deal with your feelings and remember to communicate with your spouse.
Early awareness is key in stopping this aggressive cancer in its tracks. My son was turned away from minor injuries unit twice after being told it was growing pains. It took nearly 2 months of appointments before we were finally taken seriously and thank god it had not spread.