Less than one week before Christmas 2021, Matt and Dani Weston’s entire world suddenly up-ended when their “big, healthy, strapping” four-year-old son Jacob woke “writhing in pain”.
After a trip to emergency, Jacob was back home but his condition worsened until on Christmas Eve he “looked on death’s door”.
When Mr Weston made this remark to his wife, he hadn’t realised how literal it was until days later when Jacob was diagnosed with acute lymphoblastic leukaemia after being transferred to The Children’s Hospital at Westmead.
Complicating matters, both Mr Weston and Jacob tested positive for Covid, prompting a month-long period of isolated treatment.
Separated from his wife and one-year-old son Joshua, who remained at home in Naraweena on Sydney’s northern beaches, Mr Weston grappled with helping Jacob understand both their hospital stay and necessity of treatment.
“Jacob was a big Marvel fan, so I was using Marvel analogies about there being baddies and these [doctors] are the superheroes that are going to come and get rid of the baddies, but it was really, really challenging” he said.
The initial month included multiple procedures under general anaesthetic, blood transfusions, and the daunting task of each day administering more than 13 medications.
“Jacob had barely taken Panadol so I’m basically having to battle with him while locked in a room to get these medications inside him, it would take hours,” Mr Weston said.
“I just want to lie on the bed with him and just cuddle him, and say ‘this is going to be okay, buddy, we’re going to get through’, this but I couldn’t because I had to get this medication in him and it would just be day after day, battle after battle.”
When the Covid isolation period ended, Mr and Mrs Weston were able to take turns staying with Jacob and start meeting other families in the hospital.
Forming bonds with these families not only gave the Westons a network people who understood what they were going through, it profoundly changed Mr Weston’s perspective.
“I started to feel like we were one of the luckier families in that while it was horrendous what we were going through, there’s been so much research into it leukaemia, and even though the treatments are brutal, the success rates are really good now,” he said.
“I would meet families where they’d been in there for years and some had relapsed and were running out of options or, there were kids with brain tumours, like DIPG (Diffuse intrinsic pontine glioma), where there’s close to zero per cent survival rate.”
While Jacob is thriving in Year 1 at school, he still has five months remaining of his two-year treatment program, although the intensity has reduced.
Mr Weston has become a passionate advocate for the Children’s Cancer Institute and while retelling his story reopens emotional wounds, he hopes to encourage people to donate to further research.
With September being Children’s Cancer Awareness, CCIA are urging people to join them in their mission to cure childhood cancer.
“Cancer kills three children every week in Australia, more than any other disease [and] 70 per cent of children who survive cancer suffer long-term effects from their treatment,” CCIA brand, communications and digital general manager Heather Mcilfatrick said.
“When a child is diagnosed with cancer there is usually no known cause. This makes it very hard for parents, who are left with unanswered questions about why their child has cancer, and if there was anything they could have done to prevent it.
“The lives of their entire family are thrown upside-down. Treatment can go for years, can be very intensive and expensive, and puts an enormous strain on family life.
“Our research exists solely to put an end to this, we don’t just hope to do it we will do it. This provides enormous reassurance for parents and families.”
This Childhood Cancer Awareness month, help find a cure for every child with cancer by donating $1 for every year of life you have been lucky enough to live. Visit ccia.org.au
Originally published as Four-year-old Jacob was the picture of health until he unexpectedly woke ‘writhing in pain’