In the space of just ten minutes, Carlie & Daniel’s family life was turned upside down. Their youngest daughter Mia Rose was diagnosed with retinoblastoma. She was not yet three months old. Retinoblastoma is a rare form of cancer that rapidly develops in the retina. Tragically, it is exclusively found in young children and in Mia Rose’s case, was in both of her eyes.
“We had thought it was a lazy eye,” mum Carlie recalls, “so we had her checked by an ophthalmologist. But nothing prepared us for one of the worst afternoons imaginable.
”Hearing the word cancer, Dad, Daniel, said it felt like the walls were crumbling in around them.
“When you know there’s a significant problem, but you don’t know what the solutions are or the outcome is going to be, the fear and uncertainty are horrendous.”
Mia Rose was immediately referred to the children’s hospital to start chemotherapy the following morning.
“Our lives changed in that moment. We didn’t sleep a wink that night waiting for the next day. I couldn’t even drive to the hospital, the shock was too much.”
The family clung together as they tried to process the devastating diagnosis while doing everything to protect their two older children Lily May and Oliver then aged nine and seven.
Daniel said, “We were filled with anxiety and confusion while we came to terms with what was happening. The hospital teams were extremely professional and compassionate as they helped explain the immediate next steps."
”Mia Rose endured six rounds of systemic chemotherapy, 13 rounds of intra-arterial chemotherapy and one round of intravitreal chemotherapy. She also had a frightening stay in isolation in the intensive care unit (ICU) after developing a blood infection from a procedure and contracting Covid-19 at the same time."
During these agonising months, she also received multiple rounds of both laser and cryotherapy treatments to burn and freeze the tumours within her eyes – with each treatment requiring a general anaesthetic.
After the initial six rounds of chemo, sadly, while Mia Rose’s tumours had shrunk, they were still active. “Our daughter’s type of cancer is relentless and keeps giving us obstacles to overcome and new tumours to treat. Retinoblastoma is a long journey and can re-occur up until the age of five or six,” Carlie explains. Over the past few years, there have been moments of having the tumours under control, only for the family to be faced with it coming back again.
“Cancer has become a pillar of our existence. It doesn’t get easier but it becomes a part of our day,” Daniel says. Despite spending so much of her life in hospital, Mia Rose is bubbly, outgoing and cheeky and affectionate with her siblings. Her mum says she is chatty beyond her years. And every time Mia Rose is in hospital, if there’s someone she loves chatting to, it’s Captain Starlight!
Carlie and Daniel said Captain Starlight has helped take away the stress and the challenges of hospital life. As parents they do all they can to help Mia Rose cope with the trauma of hospital. “We use techniques now to help Mia Rose with her treatment like waiting until she falls asleep before putting her hospital wristband on and walking backwards into theatre so she can’t see the medical equipment.”
Daniel said the Captains were invaluable helping to distract and entertain Mia Rose during the incredibly stressful times of fasting and the long waits before going into the operating theatre.
“We couldn’t do it without the Captain Starlights. Mia Rose talks about the Captains all the time and her face lights up as soon as she sees them. When she’s having fun and laughing with the Captains, she will completely forget she’s hungry and not even think about eating,” Carlie said.
Against the backdrop of so much pain and anxiety, the family has found moments of much needed joy and take time to appreciate the little things in life. And anyone who meets their smiling little girl is struck by her positivity, strength and resilience. Dad Daniel said, “It’s made our family stronger; it’s given us a suit of armour and a sense of unity and gratitude. We cherish the moments we share together as a family like playing on the trampoline with the sprinkler underneath.”
Mia Rose’s tumours are currently stable, yet checks under anaesthesia remain every three to four weeks to make sure they remain on top of any new developments; so hospital remains a fixture in her life. Thankfully, with Starlight supporters, so will Captain Starlight helping ease the pain and stress of her illness and treatment.
“Starlight is such a positive pillar for us. We always talk about how Starlight has been a good element of this journey – substantially reducing the ‘stress-o-metre’ for families like ours. Starlight is vital during the very difficult times and we’re not sure how we would function without it.”
