Nevaeh Denine has a beautiful smile and a beaming spirit that captures you the moment you see her.
As happy as a four-year-old gets, her imagination takes off and her giggles are heard among adult voices while she twirls a colourful ribbon near the dollhouse on one side of the living room at her
St. John’s home.
She seems oblivious to the tubes taped to her chest.
It’s hard to believe she completed a sixth round of chemotherapy earlier this week.
Nevaeh was diagnosed last December with neuroblastoma, a rare type of cancer that can occur in infants and young children.
According to the Canadian Cancer Society, it’s a cancer that starts in immature nerve cells in the sympathetic nervous system.
“We have six rounds of chemo done and we have to go to Toronto (The Hospital for Sick Children — SickKids) for aggressive chemo,” her mother, Holly Denine, said Thursday.
“It’s a high dose for seven days and then she will get her stem cell rescue — we went to Toronto SickKids and got her stem cells harvested and she gets those put back in and her bone marrow healthy again.
“And when she comes back home she still has radiation and immunotherapy drugs, and another pretty intense treatment at the end. So, we still have at least another year of treatment, but we are determined to get through it. People say to me, ‘Holly, I don’t know how you do it,’ but she makes it all easy.”
Nevaeh wears a bright yellow scarf to cover her head where her beautiful long hair was lost because of the treatments.
She doesn’t mind removing the scarf for a photo, her smile brightening as she slides it off. Inside her little body there’s a heart as big and loving as her name — Nevaeh spelled backwards is heaven.
Watching the Janeway Telethon on television recently, Nevaeh said she wanted to do something to raise money for other sick children and their families.
Holly told her friend Stephanie O’Brien of OZFM, who appeared on the telethon, that Nevaeh wanted to sell lemonade to raise money.
O’Brien said that discussing the idea among friends and family led to postings on social media.
Idea gathered momentum
The idea has now blossomed into a big event planned for Sunday on the parking lot of St. Kevin’s Junior High School in Goulds, next to the church, from 11 a.m. to 2 p.m. In addition to a big lemonade stand, there will be other attractions such as antique cars, a reptile zoo, cotton candy, cupcakes, DJ music, Hula-Hoops, fries and face painting.
“Nevaeh is going through her own treatments right now, and for her to even have the thought, at four years of age, to give back is beyond her years right now,” O’Brien said.
Holly said there will be more lemonade stands during the summer and, in addition to raising money for families, it’s important to raise awareness.
“When Nevaeh first got diagnosed, it was so overwhelming. People were so generous, and businesses, and we didn’t know how to thank everyone, so this is our way to thank everyone, to pay it forward,” Holly said. “We are going to do more lemonade stands and help more families to ease the financial burden that we felt ourselves. Nevaeh is really excited to be doing this.”
Two more children diagnosed
When Nevaeh was diagnosed in December, she was the only child in the province being treated for neuroblastoma. Since then, two other children have been diagnosed with the disease, Holly noted.
She said it’s important to raise awareness of neuroblastoma and other pediatric cancers.
“Two other families were diagnosed with the same thing as Nevaeh since January, and it really hit home. So we really want to get awareness out there and support, and to make it as easy for everybody as possible.”
Nevaeh has been busy preparing for Sunday’s event since she got home from the hospital.
There are lemons to squeeze and a big lemonade stand to get ready.
“We are going to sell lemonade, and we are going to have reptiles and have balloons,” she said, smiling.
“We’ve been doing all kinds of stuff for it. We are getting our lemonade stand ready.”
While the diagnoses and treatments have been a big worry and a heavy burden for Nevaeh, Holly and Nevaeh’s big brother, Nick, there’s another little family member who’s been helping to lighten the load.
Skipper, a teacup Yorkie puppy, came along about seven months ago, and Nevaeh and Skipper have become inseparable.
“I didn’t know how she was going to react to Skipper, but they have an amazing bond,” Holly said.
At their home Thursday, Nevaeh laughed hysterically as she rolled across her bed with Skipper jumping at her, pushing his face in between her arms trying desperately to give her “kisses.”
Before that, Nevaeh had placed Skipper in a little stroller and wheeled him down the hallway.
“Cute” doesn’t come close to serving these moments justice.
You almost forget this little girl has endured more already than most people will in a lifetime.
It’s not her first fight with neuroblastoma.
At 22 months old, Nevaeh was diagnosed with Stage 1 neuroblastoma over her right kidney.
Surgery was needed to remove the tumour and her right adrenal gland.
Nevaeh responded amazingly and lived a normal life until last November, when new symptoms were discovered that led to the December diagnosis.
Holly believes much of her little girl’s fighting spirit comes from Neveah’s father, Joey Poole, who died after a courageous fight against cancer in March 2009 — four months before Nevaeh was born.