Baby Reef’s love for sick grandpa
Baba Reef knows what it’s like to suffer – and now he’s helping his beloved grandfather in his battle against terminal cancer
THE little boy is as clued up about hospital procedures as many nurses and doctors – without having to be told he sanitises his hands and makes sure his surgical mask is fitted properly on his face. But this time Reef Carneson – or “Baby Reef ”, as he’s known – isn’t the patient. Rather he’s here to support his beloved “Grandpa Doh Doh” who’s undergoing treatment for cancer.
Reef (10) knows all too well what Don Carneson (70) is going through.
At age one he crept into people’s hearts with his battle against leukemia. After undergoing a bone marrow transplant he suffered a devastating setback when he developed graft-versus-host disease (GvHD) – a rare complication that left his immune system so weak there was the risk the slightest infection could kill him. Then he developed skin cancer.
Reef and his family were living in Joburg when he underwent his bone marrow transplant. But after his body rejected the transplant his parents, Lydia and Ryan, moved to the US in the hope doctors there would be able to do something to help him. They first lived in Los Angeles but have since moved to Cincinnati.
While Reef ’s cancer is in remission, these days it’s his grandfather who’s undergoing weekly treatments for terminal skin cancer – and just as Don was always there for him when he was sick, his grandson is now determined to return the favour.
It’s clear all the nurses at Cincinnati’s The Christ Hospital adore the plucky boy. Every Thursday they let him draw his granddad’s blood for tests.
At home Reef also often plays “doctor”. He likes to cuddle up to Doh Doh to check his temperature or blood pressure. “The two are unbelievably close,” his grandmother, Charmeon (67), says.
Reef insists on doing everything for Don – even though as a result of the GvHD he can’t open his hands and struggles to walk.
Because of all the time he’s spent in hospitals nothing fazes him – he doesn’t even flinch when he sees needles being jabbed into his granddad, Charmeon says.
“The only time he cries is when Don is admitted to hospital and Reef has to leave him – then he sobs and begs to stay.”
Reef insists on doing everything for Don
AT THE Carnesons’ humble home in suburban Cincinnati, Reef is up at dawn to visit his grandparents who live in the basement. After Don was diagnosed with stage-four skin cancer in 2016 doctors in SA told him there was nothing more they could do to help him. Unwilling to accept what amounted to a death sentence, he and his wife moved to the US towards the end of 2017 to seek other treatment options. Because they live with their son and daughter-in-law they get to see their grandson every day.
“Reef has severe separation anxiety and sobs for hours when he can’t be with Don,” Charmeon says.
On Fridays it’s particularly bad because on that day Don has to leave the house at 6am to have his weekly chemo treatment. “Reef will sit next to the phone, crying as he waits for Grandpa to phone him,” Charmeon adds.
But there’s great joy when they’re finally reunited. After completing his treatment Don often surprises his grandson by picking him up from school. When Reef catches sight of him he stretches out his arms, gets up out of his wheelchair and takes a few wobbly steps while calling, “Doh Doh!” – as if they haven’t seen each other in years.
It’s a moving moment for everyone – including Reef ’s teachers, who’ve become fond of him. They often tease him, saying they’re going to keep him back for a year just so they can have him around for a little longer, Charmeon says.
Reef and his sister, Payten (8), were previously homeschooled to prevent them being exposed to germs. But with Reef now having a monthly infusion to build up his immune system he’s a little stronger and doctors were able to give the green light two years ago for him to leave the house and go to school.
Because of his health Reef wasn’t on the same level as learners his age so he was placed with younger kids, Charmeon says. He and his sister are both in Grade 2 but in different classes.
“I’d say Reef probably functions at the level of a five-year-old,” Charmeon says. “He was in isolation for so many years and unable to interact with other children or go to school, which has delayed his development hugely.”
Although Payten is younger than Reef she behaves as though she’s the big sister and is protective him. “She’s amazing with Reef,” Charmeon says. “She’s always ready to explain what he’s saying to anyone who doesn’t understand him.”
Although he’s 10, Reef could easily pass as a five-year-old – years of steroid treatments have stunted his growth. He has a dedicated aide at his side all day to help him and make sure he does his work.
Because of the GvHD he’s allowed to play outside only when it’s overcast, and even then he has to wear sunglasses and a beanie to avoid exposure to strong light.
His mom, Lydia (39), never ceases to be amazed at his resilience and describes him as a living miracle. “He’s gone through harsh chemo treatments, many severe infections, ICU admissions, septic shock, a bone marrow transplant – the list is endless,” she says.
Lydia works as a childminder and her husband, Ryan (also 39), is a trained chef and manages a restaurant in Cincinnati. With what they earn there’s no way they could cover Reef ’s medical bills so they rely on donations.
The boy is on a new drug for his GvHD and also has to take steroids and epilepsy medication along with all his daily vitamins, his gran tells us.
His eyes are unable to form tears so he has 20 phials of blood drawn every month which are used to create a serum that has to be instilled into his eyes every two hours throughout the day to keep them lubricated.
The road that stretches ahead seems endless. “I doubt whether Reef will ever be done with treatment here in the US, so for as long as their visa allows they’ll need to stay,” Charmeon says.
She says there are days when neither Don nor Reef are doing well. But they’re still there for each other and Granddad always does his best to hide how bad he’s feeling, for his grandson’s sake.
The relationship between Reef and his Doh Doh is moving, yet Charmeon worries about the toll it would take on the boy should Don lose his cancer battle. After all they’ve gone through the family are hoping for a better 2019 – a year without cancer or, even better, a cure for all kinds of cancer.
“We pray too that Reef will make new friends, grow in confidence and cope with all that life has thrown at him,” Charmeon says.