When Evan and Renee took their two-year-old daughter Lexi into emergency, they could never have anticipated what was to come.
Worried that Lexi continued to run fevers their family doctor couldn't explain, they were hoping the hospital could provide them with some answers.
Within 24 hours however, their worlds had been turned upside down as Lexi was devastatingly diagnosed with a cancerous Wilm's Tumour on her right kidney that had ruptured and spread to her lungs.
"We were heartbroken" recalls Evan. "Renee and I felt like our world had been ripped away from us, and that the worst-case scenario would surely play out. It was honestly the worst feeling you could ever experience. As we saw more specialists, we started to think about it more rationally and focus on the task at hand - reminding ourselves to think positive and trust the professionals."
Lexi found her hospital stays particularly difficult, and was traumatised by her loss of control with all the poking and prodding she suddenly experienced in the early stages of her treatment.
So far, little Lexi has endured 20 weeks of chemotherapy, 8 general anaesthetics, 25 nights in hospital and a major surgery to remove her right kidney and clear the tumour.
For her ongoing care she returns to the hospital up to 15 days per month, and is currently receiving a further 35 weeks of chemotherapy and soon will start radiotherapy. Unable to go to day care because of her condition, little Lexi also misses out on vital social interactions with other kids her age.
Despite everything she has been through, Evan and Renee continue to marvel at Lexi's spirit.
"She has shown incredible inner strength, and really showed us what resilience is all about," says Renee.
Throughout their ordeal, the Starlight Express Room has been a shining light for the whole family. Creating the laughter and play Lexi's childhood was missing after her diagnosis, Captain Starlight provides has created a safe and fun space where Lexi can be her three year old self as she faces her ongoing treatment.
Lexi loves the Captains so much that instead of being frightened of the hospital, Lexi is now excited to go to every appointment, and always has somewhere fun to go during her longer stays.
"It's not 'going to the hospital', it’s 'going to the Starlight Room' for Lexi! A trip to the Starlight Express Room has become an event we can build our day around, and gives us something to talk about before and afterwards," says Evan.
When visiting the Starlight Express Room Lexi loves the giant interactive computer and is always keen for a turn on the Nintendo Switch. For a low-tech option Lexi's go-to is the magnetic fishing game which she loves to play with the Captains.
Evan and Renee have been so thankful for the difference Starlight has made to their family. So much so in fact, that Evan recently signed up to take on Starlight's very own Super Swim Challenge!!
With all funds raised supporting Starlight's programs, Evan pledged to swim an impressive 20 kilometers in the month of February, and asked family and friends to sponsor his efforts. Evan ended up out-swimming his 20km goal, and with thanks to the generosity of family and friends also ended up smashing his fund-raising goal, becoming Super Swim's top individual fundraiser for 2023, raising over $26K!
Awesome job dad!!!
If Renee and Evan had the opportunity to speak directly to those who support Starlight, they'd like to share this heartfelt message;
'It's difficult to realise how important donations really are until you go through it and see it for yourselves. The fact there is a foundation set up with a single purpose of putting a smile on kids' faces is the most heart-warming thing ever - and seeing that smile on your own child's face in times of high stress and worry often puts a smile on your own face too! That has to be good, right?"
