Orlando, the baby boy of orthopaedic surgeon Levi Morse and wife Tina, was diagnosed with stage four, high-risk-neuroblastoma when he was only eight months old.
Orlando completed his treatment at the end of 2015, the now four-year-old responded well to treatment and all scans to date show no evidence of disease. However, due to the low survival rates for his type of cancer, the family worry about relapse every day.
“Each time he is due for scans I hold my breath as we wait for results,” said Tina. “The anxiety is overwhelming. There are no curative treatment options for Orlando if he were to relapse."
"Research is the way forward for our family. Orlando was given a five-year survival rate between 20 and 30 per cent at diagnosis. Scientific breakthroughs will increase that survival rate. Even if it could go up to 50 per cent – that would offer us hope."
“Naturally we want a cure for childhood cancer, but now that Orlando has gone through treatment, our hope lies in increasing his chances of living longer."
With that in mind, the Townsville locals, who also have three daughters, held a fundraising dinner last year which raised over $15,000 for The Kids’ Cancer Project. On the night the couple also presented a personal cheque for $20,000 to the charity’s founder, Col Reynolds OAM.
"We believe that scientific research is the answer and we’re prepared to put our money behind it,” said Tina. “We would give anything to have a cure for Orlando because he’s priceless. We want to encourage other people to give generously and get behind the science and research that will increase survival rates and find a cure."
For Tina and Levi, sharing their story is also about increasing awareness for the disease which kills more Australian children than any other.
“People are oblivious to childhood cancer,” said Tina. “It sits in the too-hard basket. People think ‘it’s not going to happen to me’. I know, because that’s exactly what I used to think."
“Bald heads and smiley faces isn’t what childhood cancer is. The disease affects the whole family, your relationships with each other and your friendships outside the family circle. Childhood cancer changes you. You’re a completely different person coming out of it than going in."
“Initially we wanted to put our heads in the sand, get the treatment done and then have everything go back to normal. However, it doesn't work like that. Life will never be what it was prior to Orlando being diagnosed. People say you develop a ‘new normal’. Our lives are still filled with hospital visits, treatment effects, emotional obstacles and anxiety of what the future holds for our family."
“As uncomfortable as it is to share our family’s personal and intimate story, we feel the benefit of increasing awareness and ultimately funding, is worth it."
"People talk about the ‘cancer journey’, but that doesn’t actually give enough meaning to the situation. I mean, a journey is a happy thing. Having a child with cancer is more of a nightmare you can’t wake up from."
Some of those nightmare moments for Tina were having to hold her baby down through painful procedures, and watching as poison was pumped into his tiny body to eradicate the cancer.
"I wanted to protect my child from horrible treatments and side effects,” Tina said. “However, I knew if I did that Orlando would definitely die so I would hand my child over, hold him still and allow what needed to be done."
"It is a horrible feeling and I will never forget the look in his eyes during treatments and procedures, it was like he was begging me to make it stop and I just couldn't change anything for him. I think I will always feel a sense of guilt about that, if only a mother’s love was enough to protect your child from all things."
Children are resilient and despite all the trauma Orlando has suffered, he’s growing up to be a boisterous little boy, strong and mischievous.
"He loves playing outside in the mud,” said Tina. “He loves painting and making ‘paint soup’. He just loves making as big a mess as he can. He’s into typical boy stuff like dinosaurs and superheroes. He also loves his dog, a French Bull Dog called Luna. He says Luna is his best friend."
The family have also been able to enjoy quality time and create new, special memories.
"Before Orlando’s diagnosis we were going to take the whole family overseas. When cancer came, everything stopped. All our plans went on hold. So it was a really big deal when we could finally do the things we’d planned years earlier."
"Orlando has done some wonderful things. I have an amazing photo of him ice-skating under the Eiffel Tower. I remember watching him then with tears in my eyes remembering there were times we thought we’d never get there."
The Kids’ Cancer Project thank Tina and Levi for sharing their story.