Emma Drummond knows pains that come and go - the sting of skin and tissue coming apart and knitting back together, muscular aches that feel better under a hot shower. But the pain in her bones - a side effect of chemotherapy - is constant. A weighted blanket is the only way she knows to dull it a little. She spends hours wrapped up at home, not going to the park, not being the mum she wants to be, not always having the answers when her daughter, Casey-Lee, asks difficult questions.
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"She says, 'Mum are you going to heaven?'," Ms Drummond said.
"I said, 'I hope not'."
"She says, 'you can't go to heaven because you're not old. You can only go to heaven when you're old'.
"She's only six years old and she shouldn't even know what cancer is, but her whole life revolves around it."
The Dapto 24-year-old has spent almost eight years battling an unthinkable series of cancers and other serious health problems that could have killed her several times over. Doctors have attributed her poor health to a gene mutation called TP53, which leaves her body unable to fight off cancerous cells.
She was 18 and a new mum when she was diagnosed with the rare and aggressive bone cancer, osteosarcoma. Over a two-year period she spent 126 nights in hospital, undergoing nine months of chemotherapy, a major hip replacement, another three months of chemotherapy, then another two hip, pelvis and femur reconstructions in the two years that followed.
"Part of my bone deteriorated so nothing was holding - all the screws and stuff kept coming loose," she said.
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Against the advice of a doctor who proposed she wait three years, Ms Drummond had a double mastectomy at 23, after learning she had a 95 per cent chance of developing breast cancer.
"It was a huge decision because I was only 23, but once we did the surgery we found out my whole right breast was full of pre-cancerous cells. I'm so glad I made that decision."
Ms Drummond believed her treatment had made her infertile and was elated when she and partner James Adam fell pregnant with their second child. But in news that marred what should have been a happy second pregnancy, and has terrified her wider family, Ms Drummong has now been diagnosed with Myelodysplastic Syndrome (MDS), a pre-leukemia that will evolve into the incurable Acute Lymphoblasic Leukaemia without a bone marrow transplant.
Testing amongst her family shows Ms Drummond's sister Sarah is the best available match, after a more ideal German donor was ruled out due to COVID-19 restrictions.
Ms Drummond said her dire situation had drawn stark attention to the measly number of people on Australia's register of bone marrow donors - estimated at about 100,000.
As an Aboriginal woman, finding a suitable donor had been especially difficult, she said.
"It's ridiculous - it's like people just don't know about it."
"The doctor said it's increasingly hard for us Aboriginal people because our DNA is different to the white man's, so we need more Aboriginal donors as well.
Ms Drummond and her partner received a further recent blow when they learned their baby boy also has the gene, as does Casey-Lee, who has already undergone surgery for an adrenal carcinoma.
The little girl will live with her grandparents for three months from April 15, while her mum moves into a Sydney hospital and her dad and brother relocate to a nearby property to support her.
Ms Drummond says she is looking forward to the weekends, when Casey-Lee will visit - and some brighter mother-daughter conversations can happen.
"Casey said to me, 'mum, do you have cancer?'."
"I sad, 'yep bubby, I do. Do you know what that means?',"
"She said, 'You go to hospital, you have your medicine and come home better'.
"I said, 'that's exactly right'."
Ms Drummond's partner James Adam has had to quit his job as a metal roof plumber so he can temporarily relocate to support her. Visit the family's gofundme page to contribute to fundraising for the family.
Angela Thompson
Proudly Illawarra Mercury since 2008; these days covering crime and justice issues. UOW alum. Thrilled by the chase and sobered by some of the things I see and hear when I stand still - sometimes in the same day. ang.thompson@austcommunitymedia.com.au
Proudly Illawarra Mercury since 2008; these days covering crime and justice issues. UOW alum. Thrilled by the chase and sobered by some of the things I see and hear when I stand still - sometimes in the same day. ang.thompson@austcommunitymedia.com.au
