Johnny Raphael is only 8 but he's saved up a bag of Christmas and birthday cash and coins and is finally ready to spend it.
He wants to give it to Starship Hospital so they can buy another bed for really sick kids, like him, so they don't have to
Cancer sufferer Johnny, 8, wants to donate savings to Starship Hospital
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Johnny Raphael wants to donate his bag of money to Starship Hospital so there's more beds for sick kids, like him. Photo / Michael Craig
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It was on a trip back home from the hospital when Johnny said to his dad, Ben Raphael, he wanted to give his bag of money to Starship Hospital.
"He's a very kind-hearted boy and has been very frugal with his money. But I didn't know where that came from."
Johnny's wishes inspired a family decision to set up a Givealittle page in Johnny's honour. So far more than $10,000 has been raised. The money will be given to Starship Hospital, Child Cancer Foundation and a portion set aside for Johnny.
"He's missed out on so much, it would be nice to do something for him," Ben said.
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The family want to show their appreciation to Starship Hospital and supporting charities because they have done so much to help them.
"It hasn't been their fault things have had to be put off. They've actually been really amazing."
The Raphaels' nightmare started when Johnny's mum, Melissa, took their son to the doctor in 2020 with a cough.
As the doctor used the stethoscope on Johnny's back to check his breathing, he noticed the curve in his spine.
"It's not something we had noticed before because we always see him but once it was pointed out to us we were like 'holy, how did we not notice that?'."
A specialist appointment followed and Johnny was diagnosed with scoliosis. An MRI scan to determine the cause revealed the shock tumour news.
Ben said the tumour - called ganglioneuroma - was about 150mm high and about 100m wide.
A biopsy originally showed it was benign but doctors wanted a bigger biopsy, which required a bigger surgery.
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But there were several unavoidable setbacks. First, there was the nurses' strike and then an RSV outbreak. Each time there weren't enough paediatric ICU beds so his surgery had to be put off.
Ben said it was about two months before they could finally get surgery and it was a difficult day - not helped by the fact New Zealand was in lockdown, shutting them off from their family in Rotorua and Wellington.
The surgery was meant to take eight hours but they were called back after just four. Doctors told them parts of the tumour were indeed cancerous and if left untreated could spread throughout Johnny's body.
Johnny is now five rounds into eight rounds of chemotherapy, which has been paused to give him strength for Monday's surgery.
The operation was supposed to go ahead this week but a vital piece of equipment was not available.
"They have reached out around the world to doctors to find out how they can go about dealing with this tumour because they can't find anything else like it."
The equipment they needed was for monitoring Johnny's spinal cord and will help guide the surgeons.
"They don't want to go in blind because the risk is he will lose control of his body from the waist down."
The good news is, the chemotherapy appears to be working and recent scans show there's no longer any sign of the aggressive cancer. But doctors need to remove the tumour to make sure.
Doctors are hoping they can remove up to 60 per cent of it on Monday. Once he recovers from that operation, there will be another operation to manipulate his spine to encourage it to grow straight. If doctors don't, it'll interfere with his internal organs as he grows.
Just ask the chatty youngster and he'll tell you the worst part about all this is not being allowed to go to school for the past six months. The Arahoe School pupil misses his classmates and playing rugby, soccer and cricket.
"It's annoying."
Ben has had to put his work as a department manager for a sheetmetal firm on hold. He's worked for the company for 21 years and while he was able to do a few hours here and there, the increase in Omicron cases has made it too risky for him to get sick.
"If I get anything, it's just going to jeopardise his surgeries even more."
Melissa owns a cafe in central Auckland and has had to keep working throughout. She's Chinese and English is her second language, meaning it's been better for Ben to be the main point of contact with medical teams.
"It's been pretty hard but we can see the light at the end of the tunnel once we get these surgeries out of the way."
Johnny's grandmother, or "Meema" as she's called, Jennifer Raphael from Rotorua, said it had been heartbreaking watching her grandson go through this trauma.
The registered nurse, who works in Rotorua as a regional health adviser, said the family - including her husband John and daughter Jo - had been back and forward to Auckland to help as much as possible.
Jennifer said it had been difficult with Covid-19 restrictions as it meant only one parent could be with Johnny at the hospital at a time.
"But we aren't the only ones going through this and at the end of the day there are other kids who might have needed surgery quicker but it's not easy ... It's a scary time."
Meanwhile, Johnny told the Rotorua Daily Post he hoped people could help by donating money because it's "not fair" when there are not enough beds.
When asked if he had some ideas of what to spend money on if there was a little bit left over for him, he knew straight away.
"I want to buy a car so my mum and dad don't have to and get my driver's licence."
To donate to Johnny's Givealittle page go to, https://givealittle.co.nz/cause/fundraising-for-johnny-who-has-neuroblastoma.
Note: Johnny is the nephew of NZME news director Jo Raphael.
