Our grandson, Calib, was just three years old when he began complaining that his ears hurt. For six weeks he lay on the floor when he played because he was so uncomfortable, yet every doctor we saw told us it was simply an ear infection, even though there were no signs of one.
One day, his mum noticed he had started limping and was no longer lifting his right arm properly. She called the home doctor, who told her to take him to the emergency department. From there, he was transferred by ambulance to the Queensland Children's Hospital because doctors thought he might be having a stroke. After an MRI, we were told at 4 a.m. on 15 April 2022 that they were 99% certain he had a tumour.
Calib underwent two surgeries followed by 39 rounds of radiation therapy. Eight months later, we were told he appeared to be in remission. Then he became unwell again, and further scans showed that the cancer had spread to the area in front of his heart and behind his lungs. He had two rounds of chemotherapy before telling his mum and dad that he did not want any more treatment. We knew it would not cure him, only give us more time, and all we wanted was for him to be a happy little boy rather than spending what time he had left feeling sick.
His parents were married on 28 May 2023. That was his last good day. The following day he did not get out of bed, and he passed away on 22 June 2023, just one month before his fifth birthday. At the time, we were told he was the youngest person in Australia to be diagnosed with chordoma and the first reported case in the world where it had spread to the heart and lungs.
The Queensland Children's Hospital and all the doctors and nurses were wonderful. The only experience that could have been handled better was during one of Calib's scans, when he was being put to sleep and became frightened by the smell of the gas. We felt the situation was handled poorly and made a formal complaint. More than anything, our experience reinforced that parents know when something is not right with their child. When a child keeps returning to the doctor with the same symptoms, more should be done to investigate the cause.
Our family was fortunate to receive support from Redkite, a GoFundMe fundraiser, and our extended family. Calib's parents both stopped working so they could care for him, and that support helped cover hospital visits, tolls, and other expenses while also providing emotional support.
We want decision-makers to understand that more people, including healthcare professionals, need to know about chordoma. Too many people have never heard of it. Chordoma is not just an adult cancer. Children can develop it too, and they deserve the same commitment to research, earlier diagnosis, and better treatment options as anyone else.