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Real Stories

Roman story: the love and strength of one family

Roman’s diagnosis impacted every member of his close family, but the family held it together with love and support.

Roman Djo was an active and healthy child until he was diagnosed with leukemia at just two and a half years old.

In 2018, Roman and his family were holidaying in Indonesia when Roman contracted swine flu. He had to be medivaced back to Perth. Doctors did blood tests, however, they showed nothing urgent, and it wasn’t until Roman’s grandparents came back from visiting their son in Tasmania that they noticed Roman’s stomach looking quite bloated. He’d also been complaining about aching legs and a sore stomach. Roman’s mother Tash took him to the local hospital, where he was diagnosed with acute lymphoblastic leukemia. He started treatment three days later at Westmead Hospital.

Roman’s diagnosis impacted every member of his close family, but the family held it together with love and support.

“That first year after Roman was diagnosed, we were in hospital more than we weren’t. It was hard because my husband Ron, and I were like ships passing in the night. The normal chats and family times were gone. It was so nice to know that the support was there, and we had opportunities to connect with other families.”  

Natasha (Tash) remembers how the Family Wellbeing Coordinator was there for her and her family from their first days in hospital.

“Roman loved his beads. Whenever we were in the hospital they would hang on his pole, or his robot as we called it,” remembers Tash. “His finished string of beads is huge, about five metres long, and he loves looking through them and asking what each one is for. It makes me feel proud because each bead represented something that he has achieved. It shows what he’s been through, and now he’s on the other side I want to put it in a frame on the wall.”

Reflecting on some of the times she took part in the Bead Program with her nephew, Tamara says that the beading was “a really lovely way to reset, to take away the stress of the day and just be away from those hospital moments. Those beads also helped my own kids understand what was going on, to see what their cousin had achieved and to see that each bead was another step closer to him being healed. It’s something small, but it has a great impact.”

Tamara (Tam), Roman’s aunt and Tash’s sister spent time with both boys, taking note of how Vin was coping. “Vin did really well, he just needed to know the plan. He became very good at telling you, ‘Okay, mama’s at the hospital, and then papa’s going down, and she’ll come back and spend some time with me. And then granny and pa are going to swap with them.’ I think that made him feel safe and in control. Then you put me in the mix, and he would say, ‘Yes Auntie Tam, you’re going to come and pick me up, and I’m going to spend the day at your house while mum is at hospital.’ He did seem like he was managing, but he needed to know what the plan was.”

The parents’ room at Westmead was like a second home for her and her close-knit family. Tam spent a lot of time at the hospital to give her sister a break, and to get some of Roman’s special hugs.

One of the activities that the whole family really enjoyed was the Story Beads Program, facilitated by Redkite’s Family Wellbeing Coordinator.

“The Redkite parents’ room was a great way to help families connect, to hear about the support services available and just have a bit of downtime together. That connection within the hospital system was really good for Tash and she made a lot of friends with mums and dads going through a similar experience.”

Sharon, a regular visitor to the ward, did her part in making sure her grandson was never alone in hospital. Sharon had noticed Vin, who was four at the time was scared for his brother. “They’re only two years apart and best buddies, so he missed him. Roman missed Vin too because as Phil would say, ‘When go to visit and Vin is there the two boys are often just sitting in bed playing together.’”

“We visited often, and it was terribly sad to see so many children sick, but the way Redkite has everything set up is absolutely amazing.”

“It’s just such a positive space where families can connect. All the different family groups and activities turned such a negative into a positive.

Roman is in remission, but if he ever becomes unwell and needs to head back to The Children’s Hospital Westmead, Tash and her family know that the Redkite will be there to support them.

To access any of Redkite’s services, call, email or let us know your details and we’ll get in touch with you.

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