Edwina's Story #36 Donate Fundraise Edwina was almost two in March 2016, when she became very withdrawn and irritable and presented with low-grade fevers. Despite many GP visits she progress beyond severe anaemia to severe tummy pain. Eddie’s mum and dad took her to emergency and after a long day in the hospital they were told she had a large mass on her right kidney. Our life was turned upside down in an instant. We were transferred straight to the Michael Rice Oncology Ward and over the following Edwina had numerous scans, tests and surgery which confirmed Stage 4 High Risk MYCN Amplified Neuroblastoma. Her cancer had spread to both her femur bones and she had large football size tumour coming from her right adrenal gland. Beth, Edwina's mumEdwina was given a 70 per cent chance of survival if she completed a gruelling 18 month treatment process. This included six rounds of intro chemotherapy, a 10 hour tumour resection surgery, two stem cell transplants, 20 sessions of radiotherapy, five rounds of immunotherapy and six rounds of retinoic acid. She has endured over 30 general anaesthetics, blood and platelet transfusions, IV antibiotics, weekly dressing changes and IV pain relief. Eddie was unable to eat for weeks at a time and was reliant on IV nutrition and fluids. It was extremely hard to watch, as it seemed as though the pain would never end. She has endured more than you could ever imagine and it has been the hardest experience as a mother to watch my child go through so much pain and suffering. Throughout this time we have cherished the good days, which have been few and far between, but each one gives us the strength to help support Edwina through the next stage. Beth, Edwina's mum Edwina completed her treatment in August 2017. She has severe high frequency hearing lose due to the chemotherapy treatments she received however she happily wears her hearing aids. As of March 2020 she's in year one at school and a very happy girl. We also had another baby in July last year (Pippa), who is now eight months old so it has been a very busy time for us all. Edwina had a scare at the end of last year. She had a bowel obstruction which required surgery to repair and clear all the adhesions caused by her tumour removal surgery and abdominal radiation. We had suspected she had adhesions because she would often complain of tummy pain and had a few vomiting episodes but it still came out of nowhere. The surgery was successful and she has made a full recovery. We are hoping it won't happen again. Beth, Edwina's mum. Edwina continues to be monitored with six monthly scans and follow ups with her doctor. However, they are really happy with how she is going. Manage Cookie Preferences