My child's cancer journey inspired me to give back to the community

Photo: Supplied
Photo: Supplied 

For Brisbane-based Tanya Allan, 44, the support her family received from the community during her nine-year-old daughter Lara's journey with child cancer was immense.

To give back and help children emotionally who are going through similar experiences, she created the Bravery Box.

"In April 2017 when Lara was just six-years-old a swollen lymph node on her groin turned out to be acute lymphoblastic leukaemia," Ms Allan said.

According to Cancer Australia acute lymphoblastic leukemia affects lymphoid stem cells and grows quickly and is the most common type of leukemia in children mostly aged between two and four-years-old.

"Childhood cancer happens at warp speed, so Lara was diagnosed on a Saturday, we were admitted to Lady Cilento Children's Hospital on Sunday and by Monday she began her leukemia treatment," Ms Allan said.

This two-and-a-half-year protocol includes nine months of frontline treatment involving multiple and varied high dose chemo and steroid treatments followed by 18 months of a chemo drug protocol called maintenance, which for Lara, was a more a liveable experience.

"The first nine-months were the hardest for us as it's during this time that you see your kid really sick, where you feel fear for their lives and you're essentially in and out of hospital," Ms Allan added.

Throughout this time Ms Allan notes Lara was admitted to hospital every two weeks with complications including fevers, uncontrolled vomiting, lethargy and infections. "The most challenging complication was chemo toxicity, which presented with a chemo burn to her face, neck and torso and ulcers from her mouth to her stomach," she said. "Lara couldn't eat or drink for two weeks and was on morphine for the pain."

But what was amazing during this very difficult time was how their community and family had their back.

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"My husband David's family flew in from Scotland to be with us, our work mates were incredible and I didn't need to work for the first year which meant during those urgent hospital admissions all I had to was care for Lara, and my sisters would jump into action and arrange care for our son Ruari," Ms Allan said.

"Nothing was too hard for them. They would also sneak in and leave meals in our fridge and my sisters would come in and clean the house and do the laundry, so we would come home to a clean and tidy house."

Lara also received personal support from two of her aunts, one a behavioural scientist and the other a guidance officer who taught her bravery skills to manage her emotions during stressful times.

But there was one distinct day that would inspire the family to give back to their supporting community.

Lara's port-a-cath (an intravenous access device surgically implanted under the skin) is accessed by a one-inch needle. "On this particular day her port access failed four times, so she really had to use all her bravery strategies to allow the hospital team to access her successfully the fifth time," Ms Allan said.

"After this she asked for a gift from the hospital 'surprise' box, which was kind of a medical compliance encouragement box so when things are really tricky, they're offered to children as a reward for their bravery," she said.

The toys and gifts in this box were generously donated by medical professionals and oncology families. It often had wonderful items, rewarding children for their medical compliance, however at times it was light on supplies or sometimes not age appropriate.

"It was one of those days where there wasn't much in it, but Lara just grabbed a couple of pencils and made the most of it," Ms Allan said.  

Motivated by the near-empty "surprise" box, Ms Allan and her husband organised a toy drive to see if they could get a good stash of toys. They put the word out through Lara's school, their local businesses and friends and an enormous amount happened.

"That was two-years ago when we had our first toy drive and we've never run out of anything ever since," she said.

"It's continued to come from the community but also from new families that started treatment and their community wants to know how to help."

Renamed Bravery Box it has now evolved into a fundraising body that facilitates programs that support the social and emotional health of children and families impacted by cancer.

"It's really hard to teach your child the grown-up emotions required for them to handle the pain, panic and anxiety that comes with treatment, let alone find some joy along the way, so Bravery Box provides mental health and community support to families but we also sprinkle some joy and laughter and a little bit of light in their world," Ms Allen said.

As for Lara, she's recovering beautifully. She completed treatment in June 2019, she's back to swimming squad, dance classes and full-time school.

"She's got her long curly hair and skin colour back and is enjoying spending time outdoors rebuilding her bond with her brother," Ms Allan said.

"We even went to hospital together and visited newly diagnosed families and Lara's presence made them feel optimistic seeing how active she now is. She herself also shared with them some of the bravery strategies that got her through treatment, and this is something we hope we can do more of."

To fund mental health programs for kids with cancer and research so no child ever has to be cancer brave, ever again the Bravery Box Australia together with The Kids Cancer Project will be hosting a fundraising gala at the Victoria Park Grand Marquee in Brisbane for the inaugural Hearts of Gold Valentine's Day Ball 2020 , on February 14th.