Little B v Big C: a boy's bravery
There are 500 Beads of Courage threaded on a piece of string that can wrap twice around Barclay Morunga's body. Each bead represents every needle, every day of chemo and a range of other procedures his little body has endured. The 6-year-old boy from One Tree Point was diagnosed with acute lymphoblastic leukaemia last year and is an ambassador for the Child Cancer Foundation. In honour of Child Cancer Appeal month, his mum, Nicole Andrews, speaks to reporter Mikaela Collins about Barclay's battle with cancer.
BARCLAY MORUNGA is your average science-loving 6-year-old boy who enjoys dancing around to his favourite pop songs and playing video games on his Xbox Live.
He just happens to have cancer.
When Barclay was 5-years-old, his mum, Nicole Andrews, noticed he was looking a bit pale. She knew something was wrong so she she took him to the doctor to get blood tests done. She thought Barclay may have been anaemic.
"Our doctor, she knew pretty quickly something was wrong so she got [the results] rushed through. We sat at the doctor's office for maybe about an hour before the results came through," says Ms Andrews.
Barclay nudges his mum and insists the wait was three hours. Ms Andrews says it felt that long.
When their doctor returned, Ms Andrews heard the words no parent wants to hear.
"She came in and said Barclay has leukaemia and we were off to hospital.
"I sort of just stared at the doctor. I think it took a while before it registered in my brain what was going on and I had Brooke [Barclay's sister] and Barclay staring at me because they were all in the room together."
Barclay was diagnosed in January last year with acute lymphoblastic leukaemia, which is caused by the abnormal division of bone marrow stem cells.
"I just told Barclay he was very sick and there was something wrong with his blood and he needed all this stuff done to make him feel better. He took it on board and he knows what's going on," says Ms Andrews.
Once Barclay was diagnosed, treatment started almost immediately.
"We went straight to Whangarei Hospital and he was given transfusions right away. We were there overnight, he had lots of heart scans and all of these things attached to him and then it was an ambulance ride to Starship the following day. After that was when everything started, they don't muck around."
Barclay and Nicole spent several weeks in Starship Children's Hospital in Auckland.
"I would come home on the weekends and his dad would go down, so we sort of passed each other in the night, and then I'd go down on the Sunday and he'd come back. I wanted to play my hockey and see my daughter."
AFTER more than five weeks in Starship, Barclay was finally able to return home.
For nine months Ms Andrews and Barclay had to make weekly trips to Auckland for treatment and now he has monthly visits for chemotherapy and lumbar punctures - a procedure in which a needle is inserted into the spinal chord. Barclay is also on daily oral chemotherapy, among other drugs like steroids and antibiotics.
Throughout Barclay's cancer battle, he has never really complained, his mum says.
"At the very start he was quite sick and slept a lot, there was a lot of sleeping. I don't think he was awake very much. He never complained and always wanted to go to the playroom and play and do things and he liked to play with the syringes in the hospital and squirt everyone who came in the room."
Ms Andrews admits that emotionally it has been tougher on her than Barclay, but she never lets him see her upset.
"Watching him and knowing what he was getting put into his body is tough. There is a port in his chest and they put a needle in so it goes up into the big vein in his neck and to his heart. That's how they get the chemo in.
"Only in the last few months we've been able to access it quite well. He used to have to be sedated to even get near him, I had to lie on him a bit and he used to scream the whole hospital down," she said.
"Even one night I kept you up all night," interrupts Barclay.
He is referring to the time he had an anaphylactic reaction to one of his drugs and ended up in the intensive care unit.
"It was [scary] because we were in Whangarei so things didn't go to plan. One minute he was fine and the next minute he's passed out and swelling. We had 15 people in the room at one stage and they were just telling me to try keep him awake and we didn't know what was going to happen."
She looks at Barclay.
"Remember your face got really fat and your eyes almost swelled up? Can you remember that? Your lips got really fat."
Barclay now attends One Tree Point School. He loves dancing to songs from his favourite pop artists Megan Trainer, Ariana Grande and Little Mix.
He likes iPad games and playing on his XBox Live and Ms Andrews says when he's in the shower he enjoys using syringes to squirt shampoo everywhere.
"I use it all over my body and then I waste all the soap," Barclay says proudly "I was having fun."
TO GET AN IDEA of how many treatments Barclay's little body has endured, just look at his Beads of Courage supplied by the Child Cancer Foundation. Every time he has a needle, or chemo, or just a really hard day, he gets a bead. Barclay has more than 500.
"Most of his colours are blacks - that is every day for a needle, white is every day of chemo, blue is a day visit to hospital, yellow is an overnight stay, red ones for every transfusion and extra special ones for being him," says Ms Andrews.
Ms Andrews says Child Cancer Appeal month is important because it helps "families like ours".
"If we need grocery vouchers or petrol vouchers, all you have to do is ask [the Child Cancer Foundation] and they'll get that to you. It's also quite good to have them there so you have someone to talk to."
If Barclay continues on the path he is on he will finish treatment in 2018. Ms Andrews says they have a big family trip planned to Australia to celebrate that achievement.
- To make an instant $3 donation to the Child Cancer Foundation, text 'HELP' to 833 or visit www.childcancer.org.nz to make a donation of your choice.