Update from Sophie's father, Robert 01/06/2020: "We are going okay... Sophie has had two major surgeries recently and more to come she is very weak tired and still in some pain but keeps on battling on with her strong will and smile."
Updates on Sophie's story
Sophie was two and half years old...
...when we took her to loads of doctors and specialists as she had been unwell on and off for weeks and we knew something wasn't right but they just kept saying, “its a virus, its a virus”. One morning, she woke up, was eating her breakfast and then suffered a massive fit. That’s when our world come tumbling down.
She was taken to John Hunter Hospital for emergency surgery to release the pressure in her brain. In the waiting room in intensive care in front of everyone we were told she had something in her brain that looked like a tumour. They tried to get it out but couldn’t. She was transferred to Westmead Hospital and Dr Dexter got the whole tumour out.
At first we were told it was not cancerous and then four days later we found out it was and it was bad and she may not survive. Our Sophie went through ten months of intense chemo. She was stronger than the adults. They didn't know what they were dealing with, as it was very rare. She got really sick with the chemo and ended up with a bad case of mucositis where her stomach was being drained. We nearly lost her then too. She was also in a lot of pain but she would never yell at us, as she is a child that never complains and always smiles. She was on nasal feeds that whole time plus few months after it all she lost all her strength and had to learn to sit stand and walk again play again talk and other things that was hard for us and her. She got very upset and frustrated with herself.
She is still starting over with speech and very weak in her muscles but walks parts on her own now. Sophie will need a lot of special treatment with her feet and she will never be able to look up anymore and cannot focus properly anymore. In the last few months she has also had two emergency surgeries as her shunt has been blocked. This set her back again too but she is a trooper who always battles on. Our children were deeply effected by this too as they are all close and love each other very much. We keep battling on as my husband is not a well man either with chronic fatigue, chronic depression, bi polar and damaged back with discs removed. He gets very upset that he can’t provide for us but I tell him that were just happy to have him. We always say there's others worse off and that helps to get us through the days. Sophie is our miracle child.
Sophie needs play equipment to help her strength come back travel costs is a big thing too also she loves books and stationery to help her speech and fine motors skills.
Thank you for giving us the chance to give you our story. It’s hard as no one knows much at all about this tumour 7th in the world. Thanks again we wish all rare cancer patients the best.
"PLESE NOTE THAT ALL FUNDS DONATED FOR SOPHIE WILL GO TOWARDS HER REHABILITATION.”