Navigating childhood blood cancer during a pandemic
This Childhood Cancer Awareness Month, we’re celebrating little legends like three-year-old, Archer Bermingham. Archer spent nine months, hundreds of kilometres from home and across state borders, undergoing life-saving blood cancer treatment during the COVID-19 pandemic.
Hailing from Lennox Head, a small coastal town in northern New South Wales, the Bermingham family live just a couple blocks from the beach and were enjoying the first weeks of summer, swimming and playing outdoors.
“Arch had started taking day naps for the first time in a long time and we thought it was because he was so active and wearing himself out,” his mum, Claire, explained.
“He had a couple of nights when he had fevers, so I had given him Panadol and he was able to go back to sleep.
“But after a couple of days we took him to our doctor who ordered urine tests which came back negative, but his night fevers were persisting.”
The morning of his diagnosis, Claire noticed he was limping and then a tiny speckled rash had started to appear on his abdomen.
“We returned to our doctor who sent us straight to the local emergency department for blood tests and possible imaging,” said Claire.
“It was there we were advised of suspected leukaemia and Archer was transported to Brisbane that evening where it was confirmed he had B-cell acute lymphoblastic leukaemia (ALL).”
The family travelled to Queensland Children’s Hospital in Brisbane, a 360km four-hour round trip from their home across the New South Wales-Queensland border.
“Archer underwent five phases of intensive chemotherapy, achieving remission in January 2020, which was a huge relief,” Claire said.
“Initially, we were told this intensive treatment would only last four to six months, but it’s ended up being almost nine.”
“There’s only so much tiny bodies can take, and we’ve had a few delays here and there when his body just needed a little bit of time to recover.”
The family of four, including Archer’s dad, Matt, and one-year-old baby sister, Lara, stayed at a Leukaemia Foundation Patient Accommodation Village for the duration of Archer’s treatment.
“From the day after Archer was diagnosed, we had a beautiful unit to call home and that’s just meant the world to us,” said Claire.
“It’s such a beautiful community feeling with the other families. The kids can play safely and we’ve made some beautiful friends.
“It’s so nice to know we’re not alone in this, especially during this pandemic. We just wouldn’t have felt comfortable having Arch in a public hotel.
“We felt so safe there knowing that everyone else is in the same boat and taking the same precautions. It really became our safe haven.”
Archer has now completed his intensive treatment with flying colours and will start the maintenance phase of treatment, which will take 18 months.
“We have had a few teething issues getting used to dosages and the terrifying free-fall of being let loose back into the real world,” said Claire.
The family were able to return home on 10 September 2020, just in time to celebrate Lara’s second birthday.
“It’s lovely to be back home, the COVID-19 border closure had been really difficult, and we hadn’t seen our families for over month,” said Claire.
“Arch will be able to have his six-weekly reviews, blood tests and port-flushes at Lismore Base Hospital and then we have special consideration to return for Brisbane for his three-monthly maintenance treatment.
“These will just be day trips where Archer and I will only be allowed to come straight to the hospital and remain completely isolated for his treatment.
“I’ve been told this process is very strict and can be intense, but at least we can still access the treatment he needs in Brisbane. Hopefully, everything stays on track and the travel restrictions will ease soon.”
Claire has also become passionate about raising awareness of childhood cancers and the long-term effects it can have.
“There is a lot to learn. When Arch was diagnosed, I didn’t even realise leukaemia was a form of cancer and just went in so blind,” Claire said.
“You’re in a situation where you’re making really critical decisions, on not a lot of sleep and with limited knowledge.
“It’s hard to blindly trust people with your child’s life but you really have no choice.”
She has since made it her mission to learn everything she can about Archer’s blood cancer and treatment.
“I felt the tiniest bit more steady by educating myself when our world was falling apart,” she said.
“But then the reality hit me like a tonne of bricks. Although the initial diagnosis is still the worst moment of my life, I was really at my lowest a couple of months after.
“I feel like if I’d been prepared from diagnosis with the knowledge of long-term implications, it wouldn’t have come as such a hard blow when that realisation did hit.
“It’s tough because the hype has worn off from the outside world, everyone goes back to their lives but yours is changed forever and you realise you’re in it for the long haul.”
Claire’s advice to other parents is to just take it ‘day by day, hour by hour, minute by minute and keep putting one foot in front of the other’.
“Your family is stronger than you believe. Your child is stronger than you’ll ever know. And you are stronger than you give yourself credit for.”
Claire’s top tips for parents:
- Trust your instincts, be kind to yourself, cry in the car, eat the chocolate.
- Always, always be nice to your nurse; they will save your child more times than you realise.
- Talk to other parents; no two stories are the same but no one else will truly get it.