Grace and her parents Emma and Adam have been through a lot in the vivacious toddler’s short life—successfully fighting stage four cancer, undergoing major surgery, and enduring extensive chemotherapy that resulted in significant hearing loss.
Now, despite all the odds, Grace’s cancer is in remission, and she is finally able to start living the life she has fought so hard for. With the holistic care of a team of leading NextSense experts and the support of her dedicated parents, Grace is building her social and communication skills and started her first term at the NextSense Spoken Language Preschool.
Part one: Grace’s battle with cancer
Grace’s health journey started just after her first birthday, when her mum Emma noticed her acting differently. After Emma raised her concerns with her doctor, little Grace was sent for an ultrasound.
On 21 January 2020, parents Emma and Adam received the news every parent dreads—their perfect, vibrant 13-month-old girl had a rare form of liver cancer known as a metastatic hepatoblastoma.
Suddenly the family’s lives changed. Grace was immediately taken to Westmead Children’s Hospital, Sydney, where a series of scans were conducted to gauge the severity of her cancer.
The hospital would be Emma and Grace’s home for the next 102 days and nights.
The next day, Grace was rushed to intensive care and intubated.
‘They told us her cancer had spread all over her torso, and that we'd be lucky if she survived 24 hours. That was absolutely the worst time of our lives,’ says Emma.
Grace was given her first dose of emergency chemotherapy that night.
Despite being Grace’s best chance for survival, the type of chemotherapy the toddler required, cisplatin, is known to cause hearing loss in most patients.
After just a month of treatment, Emma noticed that Grace’s hearing was deteriorating.
‘I would talk to her and read her stories, but unless I was right in her face, she didn't know that I was talking to her,’ says Emma.
Grace was eventually diagnosed with mild to severe hearing loss in her right ear and severe to profound in her left ear, likely caused by her chemotherapy.
Grace’s hearing loss meant she was eligible for NDIS support, and a plan was developed to support Grace and her family.
Having already spent months isolating Grace in hospital and attending a constant series of medical appointments, Emma wanted to be able to access all the support Grace needed in one place.
‘I was feeling very overwhelmed at the time,’ says Emma. ‘I didn't want to try and force her to go to lots of different appointments and meet lots of other people while she was in treatments.’
Read part two: Grace’s person at NextSense—her key worker
In July 2020, after emphasising that they wanted to access all the support Grace needed in one place, the family were referred to NextSense.
This is where they met Jan, Grace and her family's key worker. Jan was just what Grace’s family needed—someone who understood their individual needs and who could coordinate her specialised team.
Read part three: A new exciting chapter begins
Ever since Grace’s cancer went into remission, parents Emma and Adam have finally been able to think about their family’s future, including sending Grace to preschool.
Read more about this exciting new chapter of their life in part three.