Eight-year-old Miller is described by his Mum Jessica as “a real larrikin”...an outgoing and social kid who just loves to be “one of the boys”. He loves the outdoors, riding his motorbike, and building forts out of sticks and rocks.
Miller’s love of all things active and social has made his extremely difficult medical journey all the more crushing since he first became ill several years ago.
Miller was just four years old when he first started complaining of a sore neck. His parents Jessica and Chris took him to a GP and then a physio, and waited for the improvements to come.
When the pain continued to escalate however, Jessica and Chris were forced to keep searching for answers.
Unfortunately, their quest coincided with the beginning of the pandemic and they found it extremely hard to access the medical care they needed. Eventually they were referred to a children’s hospital for further investigation.
Neither Jessica nor Chris expected the earth-shattering diagnosis to follow.
When doctors performed an MRI they found a cancerous tumour wrapped around the young boy’s spinal cord.
At the hospital on her own with Miller, Jessica was shocked at the diagnosis.
“It was absolutely awful. I believed they would find something, but I never expected it to be cancer.
Jessica goes on to say "My first reaction was sadness in how long it had taken for him to be diagnosed. Then it was relief they had found the problem, and then it turned to fear about what lay ahead.”
Due to its delicate nature, it took doctors two weeks to plan the surgery to remove Miller’s tumour. When they did, they were able to remove about 95% of the tumour but when he woke up in the ICU, Miller had lost the use of his legs.
Once discharged from the ICU Miller spent 6 weeks on the ward learning to walk again.
Struggling to regain his mobility and confined to his room, Miller missed his friends and family. Thankfully, Captain Starlight was on hand to drop by daily with some funny jokes and games to help him laugh and smile.
“The Captains made him feel really special. Even if they can’t fix all their troubles, I 100% believe laughing and bringing even a small amount of joy to someone’s day makes them feel valued, loved and cared for.”
Once he’d regained his mobility, Miller was started on an 18-month course of weekly chemotherapy to stop the tumour from growing.
Following his chemotherapy Miller’s his health was looking good and he was able to return to school and enjoy all the activities he used to love.
“He was able to enjoy being a normal kid again” says Chris.
Ten months later however, the family’s world was rocked again as Miller’s tumor unexpectedly began to bleed and swell, putting pressure on his spinal cord.
Devastatingly, Miller went on to experience setback after setback.
For the family, “life came to a grinding halt” says Jessica. “All you can focus on is your child getting better and their needs. Our other kids have had to be cared for by relatives, our careers have halted, and as a couple all we can think about is survival.”
After surgery, Miller yet again had to build strength in his neck and legs before being released from hospital, only for the problem to return. Further surgery failed to stem the tumour’s growth, so Miller underwent six weeks of radiation while doctors formulated a plan for his next round of treatment.
One shining light amongst the darkness of continued setbacks, surgeries, painful treatments and isolation was Miller’s time with Captain Starlight and moments shared with others in the Starlight Express Room.
“Miller loves the opportunity to get out of his room and enjoy being a kid again. The moment Captain Starlight starts cracking jokes and being silly, he just thinks that’s so funny. The game consoles, movies and craft area always provide a great escape, and being able to interact with other kids is so great for him, as he’s such a social kid.”
Having faced more challenges than many adults will in a lifetime, helping Miller - or ‘Millzy’ as he is known in the Starlight Express Room! - reclaim his childhood is just so important to Jessica and Chris.
To those who support Starlight, they would like to share this message:
“Thank you so much for the time and effort put into donating and fundraising. It means the world to families like ours who have been on the receiving end of such generosity. It certainly brightens our day and makes the experience a little more pleasant.”
