“Oh, Mommy, can I please, please have some?” she asked as her family passed the makeup counter Saturday morning. Her mother, Tommye Johnson Campbell, co-owner of a Marietta company that plans corporate meetings and events, consented to what store manager Lori Brown-Jackson called a “very mini” makeover: a little eye shadow and some lip gloss. After all, she said, it was a special occasion.
Her daughter, who has sickle cell disease, was being treated to a $200 back-to-school shopping spree, courtesy of the store.
She got the celebrity treatment, too. Tommye had the store to herself while she picked out clothing, shoes and accessories with help from Brown-Jackson while being followed by an entourage that included her family and representatives from Children’s Healthcare of Atlanta.
Her dad, T.C. Campbell, said the surprise was perfect for his daughter, who is a third-grader at Still Elementary in Powder Springs. “She loves clothes and she loves to shop,” he said.
“What do you think?” Tommye asked him, holding a pair of shorts.
“I think that you have a lot of summer stuff and you need to probably get some winter stuff,” he told her.
“I’m still putting it in (the basket),” Tommye informed him.
“So you see where I stand?” he asked with a smile.
While Tommye continued to shop, the retired Xerox employee talked about his family, explaining Tommye is the fourth-generation girl to be given that name on her mother’s side.
“I have four sons and three grandsons, so she’s the only girl out of the whole clan,” T.C. Campbell said, adding his children range in age from 48 to 8.
He and Tommye Campbell have been married for 15 years. They were co-workers who connected over coffee after his first wife died of cancer.
Nobody in the family had been diagnosed with sickle cell before doctors told him Tommye Elyse had the disease when she was about a week old, he said.
“It was overwhelming. Neither of us knew we had the trait (to carry the disease),” T.C. Campbell said. “I’ve never been tested. I’m 69 years old; we never knew to do that back then.”
Tommye Campbell said Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta off Johnson Ferry Road in Atlanta has been very nurturing in teaching the family how to live with the disease and allow Tommye Elyse to live as normal of a life as she can.
Sickle Cell Disease
Sickle cell is a genetic disease that affects the substance that fills red blood cells, according to Dr. Clark Brown, the doctor who has been treating Tommye Elyse since she was born. He works at the Aflac center.
“A normal red blood cell is usually described as a doughnut and they move through the blood vessels to deliver oxygen,” Brown said. Sickle cells can look more like a half-moon. “One who has sickle red blood cells, they become hard and sticky and basically they will clog up the small blood cells,” Brown explained. This can lead to a low blood count, pain as a result of not enough oxygen getting to that part of the body and even organ damage, Brown said.
The number of irregularly shaped cells a person has depends on type of sickle cell disease a patient has, Brown said, and can vary throughout the body.
The painful periods in organs or bones are called crises. Tommye Elyse often experiences pain in her legs or her arms. She described the feeling as a throbbing sensation, and when it’s in both her legs, she’s unable to walk.
“When it’s in one leg, I’m pretty sure I need a crutch,” she said.
Because it’s genetic, the disease cannot be passed from person to person like a cold, and Brown said patients will have it their entire lives.
In Georgia, there’s typically 250 newborns diagnosed with sickle cell disease every year, Brown said. The more common S-trait for sickle cell is prevalent among African-Americans, with 1 in 10 carrying it in the state. A variant C-trait is seen among every 1 in 400 in Georgia African-Americans.
Brown encouraged anyone who is planning to start a family, especially African-Americans, to discuss their family history and be tested for the all of the sickle cell traits.
Tommye Elyse has a rarer form of the disease, which is considered less severe. Her mother said Tommye Elyse usually winds up in the hospital because of a crisis about three to four times a year. As Tommye Elyse gets older, Brown said that number could increase.
He said sickle cell patients should keep up a healthy lifestyle, stay well rested and avoid extreme temperatures.
“It’s not good to jump into a cold pool, it’s not good to get overheated, those kind of things,” Brown said.
Tommye Elyse’s mother said maintaining a healthy, iron-rich diet is important and getting enough water is vital.
“She takes a water bottle to school every day full, and we don’t require her, but we have instilled in her it needs to come home empty,” Tommye Campbell said. Her teachers and school nurse are aware Tommye Elyse has the disease, and she knows to tell them if she is coming down with pain and to show them where it hurts.
She also makes regular visits to a hematologist to make sure her body is handling the disease well and keep an eye on her red blood cell count.
Tommye Campbell said a great day would be if someone looking at Tommye Elyse would never know that she has the disease — she feels and behaves like a normal child.
Bad days are when Tommye Elyse needs intravenous medicine to manage the pain, and she goes to either the Aflac center or the Emergency Room.
In the spotlight
In June, Tommye Elyse went through her worse crisis yet, and stayed at Scottish Rite Hospital for 10 days.
Tommye Campbell said specialists had to walk a fine line to help her daughter manage the pain through tweaking her medication without completely knocking her out.
“It’s hard to watch your child go through that because there is really nothing you can do,” Tommye Campbell said.
To get her mind off the pain, Tommye Elyse said her father will start counting to 100 out of order, and she’d concentrate on what’s wrong.
“He confuses me and I try to keep up with him,” she said. “It gets pretty funny.”
During her stay, Tommye Elyse got to preview an in-house zoo channel at the zoo and give the network’s officials her feedback about the animal shows.
The next day, part of her interview was used to launch the channel. Pam Younker of Marietta, who is Children’s community outreach coordinator for Cobb, said Tommye Elyse “was laying in the bed, but her little personality just popped out.” Younker said that’s when her department wanted to do something for Tommye Elyse to make her feel special.
Younker said Children’s contacted its community partners once it was established Tommye Elyse would be well enough to start school.
“There are some folks that we reached out to and said we’d like to do a back-to-school something for a special patient and they said, ‘We’d love to do it.’”
One of those partners was Belk. Brown-Jackson said, “When they called me up and told me about Tommye starting school, I just thought, ‘You know, why not do a shopping spree to kind of kick off the school year right because what girl doesn’t love shopping, especially when you don’t have to pay for it?’”
She arranged the shopping spree to take place before the store opened so Tommye Elyse could have the dressing rooms to herself and not have to worry about other customers.
After trying on clothes, Brown-Jackson asked Tommye Elyse to practice modeling her outfits on a runway.
“I’m not sure I know what you mean,” Tommye Elyse told her, so Tommye Campbell got up on the platform and showed her daughter how to pose and twirl.
Then they trooped downstairs for Tommye Elyse’s much anticipated makeup session.
“Makeup is my favorite thing,” she said. Told she doesn’t need it, she responded “I don’t care, I still want it.” Tommye Elyse said her mother she didn’t need makeup either. “Dad, on the other hand …” she trailed off, getting a big laugh from everyone in the room.
While Lancome Beauty Adviser Kelly Pereira applied a little blush to Tommye Elyse’s face, she talked about school and her friends. She said she’s looking forward to learning to write in cursive this year and loves math. She’s also involved in soccer and dance.
She said she doesn’t like to talk about her condition with her friends much, but if she had to explain it to someone who had never before encountered the disease, she is a normal girl.
“You don’t have to be afraid of me as well as I can’t pass this on to other people because you’re born with sickle cell.”