Eight-year-old Lara Allan, who has just completed treatment for acute lymphoblastic leukaemia, recently revealed a heartbreaking fact to her mother, Tanya.
She said that when she was undergoing treatment, particularly during the parts that caused pain and made her feel terribly ill, she would “fake” her bravery.
“We were having a conversation about bravery and Lara told me that when she was really scared, she’d fake it,” Tanya smiles. “I said to her, ‘Oh my darling, that is what bravery is! It is standing up to fear by pretending to be okay!”
In the outpatient ward for kids' oncology, in what was Lady Cilento Hospital [now the Queensland Children's Hospital], there was a box from which kids could draw a surprise after they’d bravely come through a treatment.
But Tanya noticed that while sometimes this box contained exciting gifts donated by oncology families or nursing staff, at other times it ran low on supplies. This could be disappointing for a child who desperately needed a light at the end of their treatment tunnel, a positive focus during a terrible medical experience.
“We always celebrated Lara’s choice to be brave, by staying still during her treatment, for example,” Tanya says. “She always focussed on recovery. She didn't really need the box so much, but our celebration was really important to her.”
L-R Tanya Allan with her son Rauri, daughter Lara and husband David.
“But one day she had to suffer five attempts at finding her port-a-cath [an intravenous device surgically inserted under the skin of the chest] with a large needle and afterwards she was offered something from the bravery box. It was one of those days where the box didn’t contain much, and I thought I’d organise a toy drive.”
Tanya and her husband David run two businesses, a swim school and a physiotherapy practice. They reached out to their community and came back with “about 26 large containers filled with toys”. And so began Tanya’s fundraising body, BraveryBox.com.
This is Chloe, she has relapsed acute lymphoblastic leukaemia.
At the beginning, the goal was to keep the bravery box in a single hospital stocked, and that was taken care of after the first toy drive. Then Tanya turned her focus to greater goals.
Her sister and a good friend both work in the counselling and psychology field, so Tanya always had an appreciation of the power of mental health support during medical treatment, for both the child and their family.
Here is Kacey with her mum Kirsten and dad David. Kacey is due to finish her treatment for acute lymphoblastic leukaemia at the end of July 2019. Kirsten is the artist behind the Bravery Box t'shirts. Kacey's dad and Lara's dad (the two Davids) became friends while killing time at the hospital's Lego table.
“I was talking to my sister about how grateful I was that I had this emotional toolkit in place for when things got complicated with Lara,” Tanya recalls. “My son, had also gone through the same type of program, was also emotionally equipped for when things got tricky. I was saying it would be great if we could do that for all of the children.”
Providing psychological care for every child and family member in oncology was not realistic, but Tanya instead came up with a creative idea that could cover a lot of ground effectively. Bravery Box is launching a bedside reading program of well-curated books that focus on characters who make good choices and demonstrate strong emotional regulation.
“They’re conversation starters,” Tanya says.
This is Blake, he has rhabdomyosarcoma in his abdomen.
The organisation also sells t-shirts on their website, and gifts the same t-shirts to oncology families. In fact, the t-shirts, which say on the front ‘This is what brave looks like’, have developed enormous meaning amongst those families.
This is Lachlan, an Ewings sarcoma survivor.
“We’ve heard kids wear them when they feel like they need more bravery,” she says. “They wear them when they’ve grown their hair back, but they’re still really sick. They wear them when they want to have a conversation, so they want to be open and connected. We’ve had several kids whose families have put the children in their shirts at the very end, when they’ve had their funerals. It has been much more meaningful than we ever could have predicted.”
This is Macey who has rhabdomyosarcoma.
Bravery Box aims to help children build emotional and social skills, to create connections between kids’ oncology and the community, and to raise fund for kids’ cancer research.
After a fundraising evening, Bravery Box recently donated $13,000 to The Kids’ Cancer Project. And as their annual event grows, they hope that already-impressive amount will grow, too.
It’s a stunning outcome for a little idea that was inspired by a near-empty bravery box!
Picture at top of story is Slater who has posterior fossa ependymoma, an inoperable brain tumour.