Abby Boone hates the word blood. Unfortunately, it has become an all-too-common one in the Boone family’s vocabulary since the 8-year-old was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the white blood cells, in March.
It’s a sweltering hot day in July, and Abby, along with her 6-yearold brother, Andy, are leaving their Suwanee home with their mom, Kim, in anticipation of long hours of doctor appointments and errands.
“Yes, our life is a juggle, but everyone’s life is a juggle. Ours is just a different juggle than it was a year ago,” Kim says. “It’s our new normal.”
The first stop today is a quick trip to Staples for school supplies. Despite their somewhat halted lives, the Boones must still plan ahead. Abby walks through the store, pointing out things she needs, while Kim checks her list.
At the next stop—a dermatologist appointment for Andy—Abby sits in the waiting room, playing games on her iPod. She is wearing bright pink, her favorite color. She talks about her favorite foods, her best friends. A typical 8-year-old with dreams and hopes, but the toughest part is yet to come.
Kim applies numbing cream to Abby’s other arm, and the family again piles in the car. Throughout the morning, Kim has encouraged Abby to drink water. That will help the blood draw go more smoothly.
The kind lab techs at Abby’s pediatrician’s office are ready for her. They take a break from lunch just for her. Abby is scared. A past blood draw from her hand was painful, and she hasn’t forgotten. Her mother soothes her. And then it’s done.
The news is good. Abby’s counts are high enough for her to begin her new treatment round at the Aflac Cancer Center. Kim highfives Abby, happy to be moving forward. The hard part is over— for today.
It’s two days after their busy day of appointments, and Kim is up by 5 a.m. She, her husband, Jamey, and Abby are at the Aflac Cancer Center long before their 8 a.m. appointment. The nurse calls Abby and her parents back to check her vitals.
They move into another room. There they’ll speak to the doctor and prepare Abby for treatment. Abby calls it the chit-chat room. While they’re there, nurses, other staff members and even fellow patients stop by, saying hello and gathering the latest news.
Rachel Segneri, a Children’s physical therapist, comes into the room. Abby is part of a research study that will show how certain exercises affect long-term outcomes. Abby stretches, then marches in place with her mom while her dad watches and encourages her.
Melinda Pauly, M.D., a fellow with the Aflac Cancer Center, comes in to give the Boones Abby’s new treatment schedule. She also has good news.
“We have an official off-therapy date for you,” she says. “You’ll be done July 14, 2013.”
Until then, for the next several months, Abby will visit the clinic every week and spend every other week in inpatient treatment. After that, she’ll continue to visit the clinic every month. Her type of leukemia has a high cure rate, and Abby’s prognosis is good.
Jamey, a senior vice president at Bank of America, is glad to be at a hospital where he knows his daughter is cared for and comfortable.
“You feel like you’ve gained a new family,” he said. “You walk in and you know everyone here. The staff here is amazing. This is a love labor for them, and it really shows.”
Abby is tired. Sleep in the hospital is interrupted sleep, but last night was especially challenging. She began her chemotherapy at 9:30 p.m. and rested in her room. Jamey stayed with her while
Kim went home to tuck Andy into bed.
The Boones try to help Andy understand what is going on with his sister and normalize his life as much as possible. Kim and Jamey both know that a lot of their energy goes to Abby, and they make sure to do special things with their son, too.
“We try to keep life at home as normal as we possibly can—for Abby and for Andy,” Kim says.
Room 182 at the Hotel Aflac, as the Boones call it, is starting to look homey. Kim has brought food, blankets, crafts and other activities to make things easier for Abby—and for her and Jamey. Abby has decorated both her door and her window with flowers, writing the phrase, “Cancer can’t bloom here—only flowers can.”
“She is a fighter, and she is kicking cancer’s butt,” Kim says. “Everything we have to go through is just one more way to make sure we’ll never have to do it again.”