In September 2021, Leila was showering and we noticed a lump on her right leg near her groin area. Although, we weren’t worried initially, we visited the GP the next day. The lump measured 2cms and the Doctor advised that we speak to the hospital given the lump was on the large side. As the lump was originating from a lymph node, an infection was suspected and Leila was given antibiotics. However, the lump continued to grow and the hospital provided more antibiotics. After another week, the lump had doubled in size and we were referred to oncology. The 6cms lump was removed for investigation, without scanning.
After an unbearable wait, we heard the news that malignant cancer cells were present in the lymph node. Our world came crashing down on hearing these words. Leila then underwent a series of scans. We finally got a full diagnosis of high risk alveolar/fusion positive rhabdomyosarcoma. Unfortunately, they couldn’t find Leila’s main tumour which was causing the spread and to this day it is still unknown. We choose for Leila to be on the newly launched FaR-RMS trial. This meant we had a PET scan down at the Royal Marsden, London but they were still unable to locate the primary tumour.
Leila started chemo in October 2021, she lost her hair before she even reached three weeks on treatment. Leila’s whole personality has now changed, we don’t often see her beautiful smile but we cherish it when we do. She gets very angry and lashes out a lot at myself and the nurses and Doctors. She is currently on week 15 of the gruelling 27 week intensive chemo plan and due to start radiation soon. Our family, friends and local community have kept our spirits high and have been so amazing. Our world crashed before our eyes but everyday we are hopeful that Leila will fight this horrible disease.