Toddler born with extremely rare disease in second fight for life
At the age of just one, Ashton Lucas is fighting for his life for the second time.
The “strong” toddler was born prematurely on November 17 last year but just five days later he was diagnosed with congenital cute myeloid leukemia (AML).
AML is an incredibly rare cancer of the blood and bone marrow and impacts only one in five million babies, according to the Sydney Children’s Hospitals Foundation.
Ashton’s mum, Natasha Lucas, told Yahoo News Australia doctors became concerned about her son’s health as soon as he was delivered via an emergency C-section.
“When he was born the room was just really quiet and everyone was looking at each other,” the 27-year-old from Penrith said, adding that Ashton wasn’t crying.
Nurses immediately placed Ashton on oxygen assistance and her husband Nathan Lucas walked over to check on their son.
It was then he saw Ashton had bruises on his body and what appeared to be tumours on his head and chest.
“He was covered from head to toe, he had bruises from head to toe,” Ms Lucas said.
The next day, while in the Neonatal Intensive Care Unit, a doctor told the parents, who also share a four-year-old son Levi, that she believed Ashton had AML.
The newborn was then rushed to Westmead’s Children’s Hospital where further tests confirmed the devastating news.
“They took a big sample of bone marrow and a skin biopsy and told us it would take two to three days for the results — we got a phone call two hours later,” Ms Lucas said, adding that she was told it was “quite aggressive”.
'Blood monsters' return
After undergoing several rounds of chemotherapy, Ashton entered remission in April and was finally able to go home for a longer period of time.
“It was great, he had responded well to the chemo and treatment,” his mum said.
However, in August, Ms Lucas said she noticed a bump that looked like a blocked hair follicle forming on his head.
“Then it got bigger and bigger and then a couple more popped up and I looked at my partner and said ‘this isn’t good’,” she said.
Ashton’s cancer, which his brother calls ‘blood monsters’, has returned.
The one-year-old has been undoing treatment again and late last month he received a bone marrow transfusion from an anonymous donor in Europe, Ms Lucas said.
“I don’t want to jinx it but he’s doing really well — he’s active,” she added.
Family members have created a GoFundMe for the family as they try to juggle work and taking care of their two sons.
“We’re strong and we’re ok because we have to be, we don’t have a choice, but at the end of the day we struggle because we still have our four-year-old at home,” Ms Lucas said.
“Levi understands Ashton’s blood monsters are back now but how much do you tell a four-year-old to explain why mummy and daddy aren’t around all the time?”
To follow Ashton's journey with AML, click here.
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