Ethan, aged 8, was diagnosed with parameningeal embryonal rhabdomyosarcoma – extending into the anterior cranial fossa area and had also spread to the lungs & bone marrow, in December 2020. Ethan faced cancer, and his subsequent treatment, as he did with everything in life, like an absolute warrior. Sadly, after completing chemotherapy & radiation, scans showed active cancer cells, and no further treatment options were available. Ethan lost his life on 5th August 2021, just a week after his 9th Birthday.
Ethan was a funny, caring, gorgeous, mischievous & cheeky little lad who lived for his football, loved school & loved entertaining everyone around him. At the age of 8 years old, on the 2nd December 2020, Ethan was diagnosed with embryonal rhabdomyosarcoma.
He was a tough cookie, and very rarely complained, but at the end of October 2020, he was upset & complaining of a sore tooth. Away on holiday for the week, he didn’t eat as much as normal and just wasn’t himself. On 2nd November, at a dentist’s appointment, we were told Ethan had a tooth infection. The dentist scraped & capped the tooth, and we left thinking the problem was solved. A week later and Ethan still wasn’t right. We returned to the dentist and were given antibiotics. Another week passed and Ethan developed a lump in the roof of his mouth. The dentist thought an abscess had developed as a result of the infection and the tooth was removed. Following this, Ethan seemed to be getting worse and the the lump in the roof of his mouth hadn’t disappeared. We went back to an oral specialist and were quickly transferred to Sunderland Royal Hospital where they decided to drain the abscess. Following this procedure, it became apparent that the growth wasn’t an abscess, and we were sent for an emergency MRI. We were told the news that it was a benign tumour and discharged and told to expect a call from the RVI Hospital, Newcastle, within 2 weeks. The very next day, 26th November, we received a call from a consultant at the RVI, asking us to head to the A&E Department as soon as we could. On arriving at the hospital, our worlds crashed when we were told Ethan had an aggressive cancer and it was eating up through his skull and was pressing against his brain. Further tests and scans were needed to find the ‘name’ of his cancer, which would take about 10 days.
On the 2nd of December 2020 we were told Ethan had rhabdomyosarcoma. A large tumour was present in his face pushing through onto his brain. A large tumour was also found attached to his spine and traces also visible in his lungs & bone marrow. Ethan started his treatment immediately, and on the 18th December we were told it was embryonal rhabdomyosarcoma, the lesser of two evils, and they thought they could shrink the tumours, BUT they weren’t sure they could stop it coming back due to the aggressive presentation of the cancer. Ethan faced a long road ahead with both chemotherapy and then radiotherapy in the fight to beat this horrible disease .
Ethan faced everything head on. His Consultant regularly said he was defying him, as he breezed through treatments, whereas Ethan would be skipping out saying “byyeee, I’m off to KFC, see you in two weeks”. He always smiled and showed unbelievable courage. End of treatment scans showed a great response. However, a week after treatment finished, he became sick and tired, and stopped eating. In hospital we were told Ethan needed recovery time after receiving treatment. 10 weeks later he remained poorly and his eyesight was diminishing. In typical Ethan style, he commented “I thought you hadn’t opened the blinds for a couple of days.
General awareness of childhood cancer and its warning signs needs to improve! If this was the case Ethan may have been diagnosed & moved onto treatment quicker.
Ethan managed his treatment well, but there were times when it was hard to watch the impact of the harsh and dated medicines on his body. Kinder treatments are much needed.
Read all the latest fundraising news, charity news and commentary on childhood cancer.
A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
Two charities with one mission.
Alice’s Arc: Registered in England & Wales
Charity Number : 1164253
Alice’s Arc, US Inc: A registered 501(c)(3) public charity under the US Internal Revenue Code EIN: 88-4312752
© 2022 Alice’s Arc • Website By Quickfire Digital
