About Neuroblastoma Family stories Family stories Roy's story Emma and Sam welcomed beautiful baby Roy into their lives at the very height of the 2020 COVID-19 pandemic. The last thing this courageous family expected was a cancer diagnosis. "In the height of COVID-19, Emma gave birth to our beautiful baby Roy, and in the coming weeks we were falling in love while trying to find our feet as first time parents." - Sam, Roy's dad It was quickly evident that little Roy wasn’t like other babies at mother’s group catch-ups. He constantly wanted food, was grizzly, would scream for five hours straight and didn’t sleep a lot like the other newborns. After a visit to the emergency ward at the Children’s Hospital and the family's local GP he was diagnosed with 'purple crying/Colic'. "We were also instructed to feed him more as he may have just been hungry.", Sam, Roy's dad At eight weeks old, at the insistence of Roy’s grandmother who was convinced there was something wrong, Sam and Emma took him to a pediatrician. They outlined a number of issues with his feeding, bloated tummy, poor sleeping, and general irritability. "What we didn’t expect was a cancer diagnosis." - Sam, Roy's Dad Our pediatrician felt a lump upon examination of Roy’s belly, and quickly sent us to get an ultrasound, which confirmed a large mass in Roy’s abdomen. The next day we were referred to Sydney Children’s Hospital at Randwick for further testing and a consultation with a haematologist/oncologist and a surgeon. A CT (computerized tomography) scan confirmed a mass the size of a tennis ball in Roy’s left kidney region. The medical team believed it was likely to be a mesoblastic nephroma or Will's Tumour and surgery was booked for the following week. Roy underwent surgery and the mass and his left kidney were removed. Pathology from the surgery revealed that the mass was a neuroblastoma tumour, which was low risk and non-aggressive. Roy handled the surgery, four nights in ICU, and convalescence at home very well along with his trusted sidekick Ocky Boy (a toy octopus) and since then has been going from strength to strength, drinking more moderately, and sleeping for longer periods. 'He has been an absolute hero through it all, smiling, giggling (and sometimes crying, but the usual amount), playing, and of course sleeping through all the appointments.' Emma, Roy's Mum Roy is now considered to be in remission, with only a 5% chance of relapse and ultrasounds to ensure that tumours don’t come back. Roy celebrated his 1st birthday in April 2021. "Roy loved his first birthday, especially the cake! We are so relieved to have a healthy boy who is constantly smashing his milestones, and grateful to lead a normal life after such a scary time." - Emma, Roy's Mum He now goes in for 3 monthly ultrasounds and urine checks but the family is delighted with his 1st year results.