Pair do lonely lockdown in hospital
Young Roman and his mum are among 71 families at a Ronald Mcdonald House
Once we went into level 4, I basically lost my support system. — Courtney Cebalo, Tauranga mum
Tauranga mother Courtney Cebalo has been living in Auckland while her 17-month-old son receives treatment for a rare blood cancer while the country has been in lockdown.
Cebalo and her son Roman are one of 71 families — almost 150 people — living in Auckland and Wellington accommodation run by Ronald Mcdonald House Charities during alert level 4 restrictions.
Social distancing restrictions means an additional 20 to 30 families are being housed off site in hotels while their child is in hospital.
The charity has funded all offsite accommodation, food and delivery requirements over the past two weeks for the families, who can no longer use the communal kitchens to cook and have to wear masks when they leave their rooms. “For the last two weeks I haven’t had anyone come to visit,” Cebalo said.
“We are not allowed access to the kitchen and lounges and there’s no interaction with other families. They do provide meals and snacks and keep their support going so you’re not completely isolated.”
Roman and his mother have been confined to their bedroom at Domain House, aside from his regular checkups at Starship National Children’s Hospital.
Roman has received two rounds of chemotherapy and a blood transplant after being diagnosed with juvenile myelomonocytic leukaemia two weeks before his first birthday.
“When he was diagnosed he had 13 per cent leukemia in his body. He did a round of chemotherapy that took it down to 6 per cent, but I said I would like to do another round. It took it down to remission,” said Cebalo. “The chemo is quite intense stuff for a little body.”
She has been staying with him at
Domain House since Roman was discharged from hospital in June.
Up until alert level 4, friends or family would come to stay every week. Now Cebalo can only call them.
“My family would come see us and stay, my friends would come stay, just so I had that support because I am a single mother and then once we went into level 4, I basically lost my support system.”
Cebalo and Roman pass the days by watching TV, singing songs and eating meals prepared by a chef for all the families.
The pair shared meals twice a week with other families at Domain House, but this can no longer take place under alert level 4. Cebalo said the hardest part about lockdown has been the isolation.
“I don’t see other families here unless in passing, whereas before lockdown I would go and chat to the neighbour. The hardest thing is that interaction . . . when you don’t have that connection.”
But Roman knows no better: “Isolation is quite normal for him,” she said. “When we were in hospital we were confined to his room for six weeks at a time and so I believe this is quite normal for him and he just entertains himself.”
Cebalo is cautious to go outside for walks, due to the highly contagious Delta variant and her immunocompromised son. Recent figures showing the variant had infected six children under the age of 1 proved “it does not discriminate”.
“I rarely go out for walks in the Domain. It’s not so much if he gets it, it’s if I get it and pass it on and make him sick. I just keep to my bubble as much as possible.
“It used to be really scary for me taking him up to his appointment because Auckland Hospital was a location of interest and the [Starship] National Children’s Hospital is right next to it.
“But I now understand the protocols, and what they’re doing to keep the kids safe, I feel more at ease.”
Despite the current restrictions, Cebalo said she would not be able to get through lockdown in the same way without supportive staff at Domain House.
She said staff call her to check in and ask how Roman’s appointments went, supply her with essentials such as milk and bread, and have become friendly faces when she comes and goes from the accommodation.
“We’re not allowed visitors but they’ve still got huge support for us, and are here for us if we are struggling. I’m coping because of that.
“I think if I wasn’t here, if I was offsite, I don’t think I would have coped as well as I have.”
Cebalo hopes to be back in Tauranga in around 10 days. Roman was scheduled for surgery yesterday but the outbreak has delayed it.
For the moment she is happy her son is healthy. “My heart is so full that he is doing so great. I went from being very, very scared to seeing how he is today. I’m rapt, I’m so happy. I’ve still got no words for it all.”
Fundraising events and nonessential volunteer work for Ronald Mcdonald House Charities has been halted during alert level 4.
It costs the charity around $20 a day to feed each person. Right now that’s roughly $3000 a day, on top of additional accommodation costs for new family bubbles close to hospitals.
“To help us keep these families together and looked after, we’re asking New Zealanders who can spare $20 to help cover the cost of one day of meals for one of our guests,” said CEO Wayne Howett.