Being on the other side of the world is no barrier for Edwin when it comes to chatting!
The outgoing five-year-old loves being around people and the highlight of his weekend is talking with his cousin in Sweden over a shared passion for Minecraft!
“Edwin is super friendly, curious and always asking questions. He's got a great sense of humour and is really caring. He’s just a joyful little person to be around,” his dad Anthony says.
When Edwin was three, like lots of pre-schoolers he got the flu. His symptoms lasted a couple of weeks then he finally seemed to recover.
But his parents noticed he was still tired all the time, then started limping. He even fell asleep at preschool, which was very unusual for him.
When Edwin’s fatigue continued and he had leg pain, his mum and dad took him to the GP who sent him for x-rays.
While the scans didn’t show any fractures, within days, Edwin’s pain became so severe that he couldn’t stand up.
“We were so worried, we took him straight to the hospital emergency department,” Anthony said.
Tragically, tests revealed Edwin had Acute Lymphoblastic Leukaemia.
He was immediately admitted for urgent transfusions as his blood counts were in a critical state.
Edwin then started on the first phase of his chemotherapy treatment. Due to severe neutropenia and related complications, he remained hospitalised for more than six weeks.
From the moment of diagnosis, every part of life changed as the family grappled with the shock and uncertainty of Edwin’s illness and the unfamiliar world of hospital.
Edwin’s mum had to stop working to take care of him full-time in hospital which put a strain on the family financially.
It was also hard on Edwin’s older brother Evan, age 14. “Evan stepped up and had to do a lot on his own while we focused on his little brother. Despite everything, he’s stayed extremely strong,” Anthony said.
Edwin’s gruelling treatment included chemotherapy administered via lumbar punctures to target his central nervous system. He has undergone numerous procedures under general anaesthetic, including bone marrow aspirates and has had his central line replaced due to repeated infections.
One bright part of the family’s hospital journey has been discovering Starlight.
Captain Starlight helped to brighten Edwins’s long, lonely days on the ward.
“One of our favourite Starlight memories is when the Captain Starlights visited the ward when Edwin was having a rough day. They came in with big smiles, made a few jokes and gently invited him to play a game. Slowly, Edwin started to laugh and join in. That small moment completely changed the rest of his day and reminded us how much joy the Captains bring even during the hardest times,” Anthony said.
Managing the side effects of Edwin’s treatment has been challenging and painful. He suffered nausea, fatigue, infections and temporary mobility issues. The steroids and anaesthetics left him irritable and so nauseous and drained of energy it was difficult for him to enjoy normal activities.
His dad said emotionally the treatment took its toll. “Edwin has shown so much strength and resilience, but we can see how scared he is of all the needles, and he doesn’t like the feeling of going under anaesthesia - those moments are really tough.”
Amid the ongoing fear and stress of hospital, the Starlight Express Room has helped Edwin, and his family enjoy a much-needed break from the ward and have some fun.
Edwin loves going to the Starlight Express Room to do drawing, crafts and play video games.
“Without Starlight, hospital would have been much more difficult. The Starlight Express Room brought a lot of smiles and laughs and gave Edwin something to look forward to even when he wasn’t feeling his best.”
Edwin’s health journey is ongoing, and he’s now in the maintenance phase of treatment.
His dad said, “Edwin has responded well to treatment so far, but it has been a long and challenging road — physically, emotionally, and mentally. We are incredibly proud of how strong he has been throughout this process.”
Edwin has just started learning to ride his bike which has been a big confidence boost. He’s also excited to start slowly back at pre-school and his dad said it brings them so much joy to see their little boy feeling more like a regular kid again.
“Seeing our son go through his illness and treatment has been heartbreaking. But watching him laugh with the Captain Starlights and play in the Starlight Room made us feel better. For Edwin, having fun, laughing and playing made hospital less daunting and scary. Those moments helped him forget the medical routines and just be a kid. Starlight gave him a sense of normalcy and happiness during the toughest times.”
