It was 5 pm on the 25th of March 2019 when we took our beautiful 3-year-old daughter, Harper, to the doctor for a suspected stomach bug. Upon arriving at our local GP and observing Harper in the waiting room, we noticed a range of other symptoms which were out of character for Harper, including clumsiness on her left side, slurred speech, and deviation of her left eye. By 9 pm that night, our lives were turned upside down instantly as we looked at CT scans showing a 5cm mass located on Harper’s brain, which confirmed our worst nightmare – that Harper had a brain tumour. Later that night, the pressure from the build-up of fluid on Harper’s brain resulted in emergency surgery being performed, and just 18 hours later, Harper underwent yet another emergency surgery to have the tumour removed.
From there, we spent 11 days in ICU and commenced Harper’s post-surgery recovery whilst we anxiously awaited pathology results. After the hardest wait of our lives, we received the heartbreaking diagnosis that Harper’s tumour was deemed what the doctors considered the worst of the worst: a tiny handful of children a year get diagnosed with, a stage 4 cancer known as DIPG – this was something nothing could prepare us for. We spent the following weeks in hospital taking small steps in Harper’s initial recovery.
After finally being discharged weeks later, we prepared for Harper to undertake radiation – something Harper would have to endure 25 times – day after day, all while having to go under general anaesthetic. We were told that radiation treatment was only a ‘buying time’ option as this is an incurable and aggressive cancer. We would spend the following months in and out of hospital during Harper’s battle with DIPG. Weekly visits to clear her central line, which had to be flushed weekly. Harper undertook 25 radiation sessions, went under general anaesthetic 45 times in total, had four surgeries, three of which were on the brain – something no child should ever have to endure.