Addi Ghanes walked around Babyland General Hospital pushing a small stroller with pink wheels and handles and a Cabbage Patch doll inside. She had no hair on her head, but a smile on her face.
At age 2, Addi, who lives in Toccoa with her aunt Leanne Masten, doesn’t fully understand what’s going on. She has stage 4 neuroblastoma, a cancer that has wrapped itself around her adrenal gland. Diagnosed Aug. 19, Addi has already been through one round of chemotherapy and has a port in her chest to help administer it.
No one would be able to tell, however, because she’s still her girly, giggling, adventurous self.
“She’s a light wherever she goes, and I know that she’s going to come through this,” said Masten, who has custody of Addi. “I think eventually she’ll be able to understand she has cancer, and I hope and pray she uses that to help others as she gets older.”
Addi is on track to have many more treatments during the next 18 to 24 months. Masten said it will get much harder before it ever gets better. But the community and world have rallied around her as Masten has shared her story online through the Addi’s Journey Facebook page. Masten said people have reached out from places such as England, Spain and Botswana. It has helped make the entire process a little easier.
As Addi receives chemotherapy treatments during the next few months, it all leads up to December, when she will have major surgery to remove the tumor on her kidney. Following surgery, she will undergo two rounds of stem cell transplants, followed by radiation every day for five weeks. Finally, she’ll start immunotherapy for six months.
“I haven’t really studied up on immunotherapy very much, because I’m just trying to get through the first three phases,” Masten said.
“My brain is on overload. ... It’s been a crazy whirlwind.”
That whirlwind began with screams in the middle of the night a month ago. Addi woke up with pain in her right side. Thinking it was appendicitis, her uncle Warren Masten, a 30-year critical care paramedic, decided to take her to Atlanta’s Scottish Rite Hospital to have her checked out.
After a CT scan, doctors saw the tumor, which was actually on Addi’s left side. They admitted her right away. A biopsy confirmed it was neuroblastoma and chemo began immediately.
“We hate that she was in pain, but we’re thankful they found it,” Leanne Masten said. “It’s a miracle they did.”
Addi tries her best to act like a child without cancer. Masten said she still runs around and plays outside on her good days. Last week was filled with good days, as Addi got to go to the park and have a picnic. She drew on the sidewalk with chalk and blew bubbles, which she calls “bubbies.”
Then they got to go to Babyland with a friend. Addi loved it and got to take home her own Cabbage Patch doll.
“She’s still being her hopeful little self and happy and smiling and willing to do stuff,” said Alexis Yearwood, Addi’s cousin. “And still hearing her laugh all the time and seeing her play is really very good to see.”
When Addi doesn’t have as much energy, she’s at home playing with puzzles or watching movies on her iPad. She loves animals, so there’s always a new puzzle with a new animal on it for her to solve. As for movies, Masten said Addi has watched “Trolls,” “Despicable Me” and “The Boss Baby” more times than she can count.
Through everything that’s happened, Masten said she’s gained a whole new perspective on life and has a new respect for cancer patients’ caregivers.
Spending time on the fifth floor at Scottish Rite’s Aflac Cancer & Blood Disorder Center has been challenging. But the things Masten has to do at home have been challenging, too.
“I never dreamed how much you have to do at home,” Masten said. “It’s not just take them home and care for them. There’s shots ... we have to clean her port and change her bandage and flush it several times a week. It’s a lot. And she can’t go to day care, so our whole world has kind of changed.”
That’s the life the family has been thrown into, but it’s a life they’re ready for. Though the family doesn’t have a history of cancer, everyone has supported Addi. That family has grown from relatives to community members.
People have been buying gifts for Addi and bringing food for the family. There’s a steady stream of snacks for everyone and fundraisers for the family.
“You never expect this, but you find out there are a lot of people out there that are dealing with the same kind of thing you are, and you kind of become part of this so-called family,” Masten said. “You don’t realize it until you’re part of this circle you don’t want to be in.”
Even in the middle of that circle, Addi smiles through it all. She may have no hair, but she walks around rubbing her head, eager to show people. She may not understand why she’s in the hospital, but she still gets through it all.
Even on the tough days, when she’s too tired to play, she’ll watch “The Emoji Movie” and laugh, reminding the family of the little girl she is and will always be.
“We know she hasn’t lost herself yet,” Yearwood said. “And we’re hoping we never have to see the laughter go away.”