Troy and Lauren McGuigan don't want their daughter Annie remembered as she was in the months before her death.
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They want memories of their sweet, funny, affectionate toddler to override images of the sick little girl who died, aged four, from brain cancer less than five weeks ago.
But it's hard for them to forget the last year of Annie's life, when her deteriorating health meant she was bedridden. Her sight faded, she could barely talk and her tiny body was pumped full of toxic drugs just to keep her comfortable.
That's why they're urging Canberrans to confront the discomfort of childhood cancer and open their eyes to families in their midst who might be suffering during September, which is Childhood Cancer Awareness Month.
Annalee, or "Annie" as she was known, captured hearts across the capital after she was diagnosed with a one in three million inoperable brain tumour in 2013.
Mr McGuigan said the hardest part of his daughter's illness was watching "what she was and what she became". He lived on the shred of hope she would get better, even though they all knew deep down she would not.
"She went from playing to losing her sight. She'd say to us, 'Mummy, I miss you. Daddy, I miss you,' because she couldn't see us anymore. Everything was blurry and it just never got better. She couldn't walk properly. Cancer just took it all."
Mrs McGuigan said many young Canberra families were dealing with cancer but she believed a lot of people didn't want to think about children with the disease because it was too distressing and difficult.
"I wonder if people knew how horrible and torturous brain cancer is. Until it's directly affecting you or your family or someone you know I just don't think it's at the forefront of people's minds."
Mrs McGuigan hopes to raise awareness of childhood cancer and said, "Never in a million years did we think it would happen to us."
"We hope that by people following Annie's journey – and we've been so surprised at how much support there's been everywhere, not just in Canberra – that it's opened people's eyes to what happens; what can happen.
"A lot of people said they don't take life for granted any more; they treasure every moment with their family that little bit more.
"I hope they remember that you don't know what's around the corner; it could be your child; it could be somebody you know."
In recent weeks the couple, with their toddler son Max, have had to get used to life without their beloved Annie.
Their thoughts have now turned to the lessons she taught them in her short life, including a reminder to never give up, and how they can help others in her name.
"I think the biggest thing is that we want Annie to be remembered not as she was," Mrs McGuigan said.
"She was a happy, funny girl and no-one was a stranger to her. Even with everything she went through, she always had empathy for others. She hated seeing others upset or hurt."
Childhood cancer: the facts
- Cancer is the number one cause of death by disease in Australian children
- Four families hear the words "Your child has cancer" every day
- About 1000 children are diagnosed with cancer every year
- Nearly three children die from cancer every week
- 98 per cent of survivors will develop chronic medical conditions
- The causes are unknown and there is no prevention
Source: Thekidscancerproject.org.au
Details: Visit thekidscancerproject.org.au for more information, or go to goldribbon.org.au to make a donation.
