Leanne Wake discovered she was pregnant with her second child, Angus, on the same day her daughter, Ava, was diagnosed with Stage IV Neuroblastoma, a type of cancer that forms in the nerve tissue.
Ava was just two at the time of her devastating diagnosis and as Leanne said the year that followed has been emotionally and physically exhausting for the whole family.
“Our lives were crushed. It’s difficult to absorb that kind of information. It almost feels like it isn’t true. I couldn’t speak,” says Leanne.
Ava is now three, and despite her young age, she has faced more physical pain than most adults in a lifetime. To date, she has had two stem cell transplants, endless rounds of chemotherapy and several hundred tests, scans, anaesthetics, and blood and platelet transfusions.
Little Ava now faces three weeks of radiotherapy
At the time of writing, Ava is about to start three weeks of radiotherapy, a procedure that requires Ava and her family to travel to the hospital every day for three weeks.
“She goes under general anaesthetic every day for three weeks while going through radiotherapy,” says Leanne.
“She won’t have to stay overnight [at the hospital] during this treatment, as the immediate side effects should be a lot less and she should be well enough to travel.”
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While the family are grateful to be based at home during this next round of Ava’s treatment, Leanne says all previous hospital stays have been made so much brighter thanks to very regular visits by Captain Starlight, the volunteers engaged by The Starlight Foundation to bring cheer to sick kids like Ava.
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Enter Captain Starlight
“They came to visit us on the first day we arrived, and then wander around the wards every single day. They also come on request,” says Leanne.
“When we stay in the hospital, we give the Starlight desk a call first thing in the morning and request people to come and see Ava. Without fail they come and see her within a few hours.”
Leanne says on their longer stays in hospital, Captain Starlight comes every single day. And while ‘he’ might not necessarily be the same person every single day, Ava got used to a merry band of about six regular faces.
“That’s a small enough group for the kids to get used to them. Ava would get used to their style and the activities and it brought so much joy to her,” says Leanne.
Joy has been integral to Ava’s healing
Leanne stresses the importance of the mental wellness aspect of Ava’s healing journey.
“On the days when Ava can’t get out of bed, her mood lifts instantly when she sees Captain Starlight and she can laugh, sing and dance and forget about what she is going through.”
The Starlight Foundation support has also helped Leanne and her husband James deal with their own anxieties and dark moments.
“It’s such a relief to see Ava happy. There have been times, like during her last transplant when she was in the hospital room for three months straight, confined to her room. And that was very, very hard. We were emotionally exhausted ourselves and had nothing to give her at that point,” says Leanne.
“They have helped to give us the strength to push on regardless. And on really tough days they help to give her some joy and fun.”
The Starlight Foundation brightens the lives of seriously ill children and their families. As well as the Starlight Express rooms that provide entertainment and happiness to many, Starlight also offers support to teenage patients and grants life-changing wishes. This year, the Starlight team is aiming to raise $1 million to help bring happiness to sick kids and teenagers.
Help children like Ava and make a donation to The Starlight Foundation.