About Neuroblastoma Family stories Isabella's Story In the month before she was diagnosed Isabella started to lose weight, and various other symptoms started to make her very unwell. It was ultimately an abdominal ultrasound that found she had a large mass in her abdomen. As I sat down to hear the ultrasound results from our new GP and new paediatrician, I will forever remember their words: “The ultrasound found a large mass in Bella’s abdomen. You need to go to the Sydney Children’s Hospital Emergency Department now. Don’t delay. You need to expect the worst case scenario….”. The memory of that first night is still a blur of doctors and nurses introducing themselves, many questions, and the words… ” We need to do some more tests but we think the abdominal mass is cancerous. We will get the Oncology Team to come and see you”. The fear that began that night is still etched in my mind. I remember feeling that it just couldn’t be. Our baby girl couldn’t have cancer. She was just a baby.Sarah, Bella's Mum Bella was admitted to hospital that night and didn’t leave for over 4 months. Tests confirmed that her abdominal mass was the childhood cancer Neuroblastoma. During these months she was extremely unwell and unstable, and wasn’t well enough to go home. She endured so many tests, scans, blood transfusions, plus chemotherapy and major surgery. Her weight became a significant hurdle, at her lowest she was 8kg and she was placed on TPN (nutrition given intravenously) for 4 months. These months were such an emotional roller coaster…. I found we just lived minute to minute as her health was so variable and so much unknown. It was like we were frozen in time… We were living this nightmare and we didn’t want to think too far ahead because we didn’t know what the future held. After 4 months, Bella had a 12 hour surgery to remove almost 85% of the tumour. There were complications during the surgery, however our brave Bella once again fought hard and was out of ICU within days. A few weeks later, just after Bella turned 2 years old her health began to improve, her symptoms became fewer and she was discharged from hospital to continue treatment from home. As time went on her health improved each day and she became stronger. Now in 2017, Bella is a happy and active 7 year old in Year 2. She loves swimming and gymnastics and really wants to be goal shooter in netball. She is symptom free and though she has active tumour remaining in her abdomen it has been stable in size since 2011. Bella now has yearly MRIs to monitor the tumour. And though she is well, there is still the fear that her tumour will start to grow again. Life has certainly thrown us some curve balls and it certainly has had many ups and downs… But the more time goes on the more it feels like just a terrible nightmare. We do live a ‘new normal’ life now….. And while encouraging Bella to live life to the fullest and looking ahead to the future it is never far from our thoughts about how quickly that can change. And how it has changed for many families we met along this childhood cancer journey. Find out how you can fundraise for children like Bella and help bring us one step closer to a cure. Manage Cookie Preferences