A new drug offered our short-statured son a chance at a longer, less painful life; but it would also alter the visible signs of his condition
For two years, we flew our young son to Melbourne every three to six months to take part in a drug trial. There is no better place than Melbourne’s Royal Children’s hospital for such a gruelling activity. Enormous fairy dioramas hang from the roof. A cylindrical fish tank as wide as a whale’s gullet and three storeys high is filled with brightly coloured tropical fish. An ice-cream shop in the hospital’s foyer is a great source of sugary bribes.
Every second trip was the worst. That’s when doctors inserted a cannula into the back of my son’s hand or foot so they could take multiple bloods over the course of the day. Once, when my son was two, the nurses and anaesthetist struggled to find our son’s veins. He has particularly tricky veins to find: they’re smaller than other kids his age and hidden under more flesh. It was my job to hold him in my Wolverine grip while the anaesthetist ran his ultrasound machine over his wrists and feet. He looked panicked. I was crying, my son was wailing and looking at me with large eyes that said: Why on earth would you let anyone do this to me? They tried again and again until his onesie was covered in fresh blood and our tears and the nurse said, “You can tell us to stop, you know”.
In August 2016 I had two spinal surgeries within the week which were both eight hours long … I remember describing the seven days in between surgeries as absolute hell, it was so painful and so hard to do anything … I just started to turn a corner and then I had to go in and have another one the following week. The second was so painful as well. The surgeon told me that it would be a month until the pain settled …
Once the surgery was done and I had recovered, none of that happened any more and I could walk so much further than I ever used to. It was amazing!
