Steve will be starting Ride2Cure Neuroblastoma in Brisbane, home to one of our Superhero’s, Charlie Shirran.
Charlie was a very normal, happy, 9-month old little boy. However, his family’s whole world turned upside down after noticing a hard lump on his face back in March 2017.
After further tests, Charlie was diagnosed with Stage 4, high risk neuroblastoma – the cancer had already spread to his bones. In order to treat the aggressive cancer, Charlie underwent months of intensive chemotherapy, major surgery to remove his primary tumour, a five week long stem cell transplant, and another round of radiotherapy plus immunotherapy.
Unfortunately, however, even after such relentless treatment there is still a 50% chance of the cancer coming back. To help reduce this statistic, his parents Mark and Jo raised funds so that he could take part in a vaccine trial in New York which he recently completed. We are delighted to report that Charlie’s recent scans confirm he is in remission.
Although unsure of what the future may hold for little Charlie, the Shirran family are taking each day as it comes and breathing in, soaking up and enjoying every moment that they have together.
Charlie’s mum Jo said: “life is so precious and it’s a shame it takes something so shocking and unfair for us to realise how unbelievably lucky we are”.
Steve will be cycling to help raise funds for vital research into neuroblastoma, to help children just like little Charlie.
Ride2Cure Neuroblastoma will finish in Adelaide on September 14, Steve will get the chance to meet one of our brave Adelaidean superhero’s, Edwina Thomas.
In the weeks leading up to her second birthday in March 2016, Edwina (Eddie) began to become very withdrawn and irritable and presented with low-grade fevers. Though there were a few changes going on in Eddie’s young life, such as adapting to a new baby brother, her mother Beth’s gut instinct told her something else was at play, as Eddie was normally such a busy and chatty toddler.
Numerous GP appointments followed, as well as a diagnosis of severe anaemia. However, after suffering from severe tummy pain, Eddie’s parents took her to emergency on the 2nd April where they were informed after a long day in the hospital that Edwina had a large mass on her right kidney.
Beth continues the story, “I was in some way relieved that they had worked out what was going on but not really aware of how serious the situation was. Our life was turned upside down in an instant. We were transferred straight to the Michael Rice Oncology Ward and over the following week 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 tumor coming from her right adrenal gland.
Once Eddie was strong enough following her biopsy surgery and central line placement we started her first round of chemotherapy. Edwina was given a 70 per cent chance of survival if she was to complete 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. She has had to endure severe nausea, vomiting, diarrhea, and mucositis, which is ulceration from her mouth all the way down to her bottom, causing severe pain.
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 Eddie through the next stage.
We are so happy to say that Edwina completed her treatment in August 2017 and is in remission. She has severe high frequency hearing loss due to the chemotherapy treatments she received and now happily wears her hearing aids.
Edwina will continue to have three-monthly scans and reviews to confirm that she is still cancer free.