Within months, Clare was planning her funeral
AT THE beginning of 2018, Clare Waites, 38, was exactly like any other busy mum.
She was always tired, yes, but running around after her five-year-old son and four-year-old daughter would make anyone tired, right?
Now, less than a year later she is planning her own funeral and discussing legacy options for her children.
Things started to go downhill for Clare in January, when she experienced a mysterious period that lingered for weeks.
"Clare was often complaining about being tired and run down," her husband of six years, Glenn, tells Kidspot. "She then had a menstrual cycle that started and simply didn't stop."
Clare's GP thought the bleeding might be due to a uterine fibroid and booked her in for surgery to remove it.
"When they went in to operate on what was thought to be a routine procedure, we found out it was a cancerous tumour," Glenn says. "That was the start of it."
It turned out Clare has one of only three known cases in the world of neuroendocrine small cell cancer (NETs), an aggressive and incredibly rare disease.
Clare endured a gruelling schedule of treatments over the next few months.
It was to no avail, however.
Clare recently found out the cancer has spread to her liver, and there is nothing more her doctors can do.
While Clare and Glenn were digesting this terrible news, they found out about a brand new, still untested treatment Dr Oliver Klein and Professor Jonathan Cebon have developed specifically to treat people with rare cancers that have previously been thought to be untreatable.
Earlier this month, Clare began a ThincRare immunotherapy trial at Peter Mac Cancer Centre, and while she remains in hospital, Clare and Glenn have high hopes that she might get a few extra years with their kids Angus and Sophie.
"We hang onto hope but also understand the reality that it's Stage 4 cancer," Glenn says. "The research for immunotherapy is groundbreaking, it really is incredible, but at the moment it is untested on such a rare cancer.
"There is only one other immunotherapy trial currently occurring in the US as the same time Clare is receiving her treatment. So while we are hopeful of positive results, the reality is that how Clare's body will react to the treatment is unknown.
"We have hope it will be the future of cancer treatment. We just hope this very aggressive cancer holds at bay long enough to get enough treatments into Clare's body."
Donations are being encouraged to support the Waites family through the There For Clare website and can be made via direct deposit or PayPal or you can purchase 'There for Clare' arm bands in recognition and support of Clare's fight for life.