Child Cancer Foundation fundraiser Wig Wednesday: Johnny Raphael shares his uplifting story

Nine-year-old Johnny Raphael is “very happy” to be alive.

“It’s amazing. It’s very good,” Johnny says.

Johnny, who lives in Auckland but whose family are originally from Rotorua, is at the forefront of a national awareness campaign for this year’s Child Cancer Foundation Wig Wednesday fundraiser.

In a video promoting the campaign, being aired on television and online, Johnny talks about the impact the cancer had on him.

A little over a year ago, Johnny was throwing up and in pain as he went through treatment for a neuroblastoma tumour about 150mm high and 100mm wide called ganglioneuroma.

The tumour had wrapped itself around Johnny’s spine, forcing it to bend.

“I lost my hair because of the treatment,” Johnny says in the video, recorded last year.

Johnny Raphael, 9, said he was looking forward to having his hair grow back. Photos / Supplied

“It felt like I was getting way too old. It felt like everything was going wrong.”

In the video, Johnny, says he is looking forward to having his hair grow back.

Now, after more than 100 hospital visits, Johnny is in remission.

When asked how his hair is growing, he replies: “It’s good. It’s pretty long right now. I like it long. I missed it.”

Johnny says his hair grew back faster than he thought.

“It only took like a month.”

Johnny’s hair is not the only thing that has grown. Two rods have been inserted into his back to straighten his spine and correct the tumour-caused scoliosis.

The rods have stretched his height about 70mm.

“The only thing exciting about it is I get to be taller than my friends,” Johnny says.

The Rotorua Daily Post caught up with Johnny yesterday after he was picked up from school. He says his favourite part of school is playtime.

“I like handball,” Johnny says.

He feels about “halfway” to being his pre-cancer self.

“I just noticed I could do more stuff like running,” Johnny says.

“It doesn’t hurt like it used to. Now [my back] only hurts on impact.”

Johnny says he can’t play rugby because of it but he hoped he could get back to playing more sports soon.

But he still has a long road ahead of him before he can get back to tackling his friends on the rugby field.

Johnny Raphael, 9, had a massive tumour called neuroblastoma wrapped around his spine.

Johnny’s dad, Ben Raphael, says while there is no sign of any cancer at the moment, Johnny has ongoing scans every three or four months.

“[Remission] was what we had been hoping for. Every time we have a clear scan, it’s a step in the right direction,” Ben says.

“It’s been over a year of scans now. That will be ongoing for the foreseeable future.”

Ben says his son’s last chemo treatment was in June 2022. But Johnny still has appointments to check on and adjust the straightening rods in his back.

“He’s had operations for those,” Ben says.

“The last appointment was about six weeks ago.”

Ben says his son is “wanting to move on”.

“He doesn’t want haircuts now. For his first cut, I gave him a mullet for his uncle’s wedding. He liked it for about a minute.”

Ben says Johnny is “a bit visually nervous” before his appointments.

“He doesn’t want any bad news.”

Johnny with his grandmother, Jennifer Raphael from Rotorua.

Johnny’s grandmother, or “Meema” as she is called, Jennifer Raphael from Rotorua, says her grandson is “amazing”.

“We’ve still got him,” Jennifer says.

“It is amazing that he is still alive. We’re always hopeful that he’s going to continue to grow and be healthy and happy.”

Johnny’s next appointment to check on his spine is set for Monday.

Meantime, Johnny has two celebrations to look forward to.

Sunday is Johnny’s 10th birthday party and he’s invited nine friends.

“I don’t know what the cake is yet,” Johnny says.

“We’re going to have fun.”

Johnny is also looking forward to Wig Wednesday today.

“At school, everyone is going to get a wig and celebrate Wig Wednesday and we’re supposed to bring a gold coin. It’s cool,” Johnny says.

A Child Cancer Foundation spokeswoman says Wig Wednesday is a fun day where people could support kids with cancer by wearing a wig, styling a funky hairdo or shaving their head to raise money for the foundation.

“We need to raise over $200,000 in urgent funds this Wig Wednesday to provide emotional, financial and practical support to tamariki with cancer and their whānau.

“We don’t receive any direct government funding, so we rely on the generosity of incredible Kiwis to help these families through the toughest time of their lives. That’s why every dollar raised for Wig Wednesday makes a difference.”

Johnny’s message for Wig Wednesday is simple:

“Keep doing what you’re doing. One day you could save the life of a kid with cancer.”

Note: Johnny is the nephew of NZME news director Jo Raphael.

Maryana Garcia is a regional reporter writing for the Rotorua Daily Post and the Bay of Plenty Times. She covers local issues, health and crime.