A mum has made an emotional plea while trying to navigate the loss of her young daughter to an aggressive terminal cancer.
Four-year-old Zoe Tran died on Wednesday after a more than two-year battle with Diffuse Intrinsic Pontine Glioma (DIPG) — a rare fatal brain cancer that typically affects young children. Diagnosed in 2020 after a childcare staffer noticed she had developed an "unusual gait", the brave young Aussie survived a year longer than what doctors predicted.
Her mum, Huyen Tran from Sydney, has described to Yahoo News Australia the heartbreaking moment her daughter took her last breath. "I just wanted to hold her in my arms, it was just an instinct," Ms Tran said, crying as she described the pair cuddling in their armchair.
On Thursday, Ms Tran slept in her bed for the first time without Zoe. "It feels so empty. It's a very difficult and confronting time," she said. In the last few weeks of her life, Zoe was no longer able to swallow or speak.
"When she lost the ability to eat, as a mother it absolutely goes against your instincts to not feed your child," Ms Tran said. "I was wondering all the time if I was starving her to death, but if I feed her there will be a risk of aspiration which is a lot more traumatic. In hospice care they advise against a feeding tube or IV fluid for someone who has lost the ability to swallow."
Ms Tran said the hardest thing was knowing Zoe "still had the desire", but her body wouldn't "allow her to eat". The single mum said she tried to make the most of their time together but doing things that made her little girl happy, such as visiting their favourite toy store.
"On Monday we still went toy shopping — somewhere we go everyday first thing in the morning, which is the least I can do for her," Ms Tran said. "She can point to the toys and put her thumbs up or down."
Funding needed to help find a cure
During her daughter's battle, Ms Tran made it her mission to raise awareness about the rare disease.
"Majority of people don’t know about this disease and only find out when one of their loved ones go through it," Ms Tran said. "With Zoe, the first symptom was at 20-months-old when she became barely steady on her feet."
In the last six to 10 months, Ms Tran said she has met many families in Sydney going through the same hardship and has issued a plea for more "funding for research from the government" for the disease.
"Parents keep asking 'can we look at this...can we look at that' but we always get dismissed. The clinical sector needs to be a lot more flexible with a condition like this, because if you don’t try you don’t know. If there was a clinical trial that Zoe was eligible for back in April, it could’ve been a different story."
When asked what parents can do for their children who have been diagnosed with DIPG, Ms Tran urged them to be their child's "advocate".
"From my journey, I can say to always trust your instincts and if you think there's something wrong, go and check it and get a second opinion," Ms Tran said. "Be very vigilant about the care of your children because they are precious and can’t speak for themselves. You’re their voice."
Heartwarming tribute to Zoe
While describing her "special" daughter, Ms Tran's voice lit up. "She’s so emotionally intelligent, super caring, affectionate, compassionate, kind and generous to her friends and so brave," Ms Tran shared.
"My little girl tried so hard every single moment of her life to survive this condition. Our motto has been to try our best and never give up. Like when we go to the hospital, take a new medication, take a blood sample, put on a cannula, try to do acupuncture, or try to take the herbal medicine that doesn’t taste or smell very pleasant.
"When I look back I have the most admiration for my daughter, she is more like a teacher in my life. She also loves learning about anatomy and surgery, saying 'mummy I want to learn how to do surgery so I can be a doctor'.
"She's so kind to the people that took care of her, she would know all the doctors and nurses by name, and say hello to everybody and wish them a good day."
Ms Tran said she is thankful to those who have supported her family and the "enormous" love she and her daughter received, which helped show Zoe "that the world is so beautiful, supportive and loving".
"That’s what I wanted her to remember during her lifetime," Ms Tran said. You can donate to Zoe's funeral costs here.
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