Bronte Doyne lost her life in March 2013, after a 16-month battle with fibrolamellar hepatocellular carcinoma (FBC), a rare form of liver cancer.
When Bronte found out that she had the disease, she did what we all do whenever we have something health-related going on - she turned to Google. No, everything out there isn't always right, but what about when it is?
In a heartbreaking interview with The Daily Mail, Bronte's mother explains the frustration that both she and her daughter felt when they brought forward information they had found online and it wasn't taken seriously.
"We had no option, but to research this diagnosis ourselves," she tells them. "Any information that we did find, we put forward to Bronte's clinician....and on repeated occasions, I. as a mother, Bronte, the patient, were told to stop Googling this disease."
Bronte's mom has also released a series of text messages, tweets and journal entries, where Bronte is clearly disheartened by the way she's being treated.
Here is a text from February 4, 2013 - just weeks before she passed away:
The medical director at the hospital where Bronte was being treated said they explored all potential treatments for the teen patient, but did apologize for the breakdown in communication. "We apologise that our communication with Bronte and her family fell short. We did not listen with sufficient attention," he said.
Hi Rach hospital was awful GP sent me because he was worried. He took some blood, said results are all over the place. Said I was going to have scans and that camera thingy. When I got there I waited all day for nothing. They didn't even take my temp or anything. I got so angry because the doctor was so rude and just shrugged his shoulders. He gave me a sarcastic comment like you can sleep here if you want but they won't do anything. So I just have to wait for another hospital appointment. Biggest ramble haha sorry! Just letting you know. You would have wanted to punch him. Will stop now. This is turning into War and Peace
"We should have referred Bronte to the expert support available from the Teenage Cancer Trust much sooner. We are sharing the learning from Bronte's experience. Lorraine [Bronte's mom] is assisting us to improve how we help patients."