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.
It’s a sweltering hot day in July, and Abby, along with her 6-year-old brother, Andy, are leaving their Suwanee home with their mom, Kim, in anticipation of long hours of doctor appointments and errands.
“Mom, don’t say that word!” Abby yells, when her mother explains the day’s schedule, which includes a trip to the pediatrician for blood work before her visit to the Aflac Cancer Center.
“We call it VJ for vampire juice, or just B,” Kim says, correcting herself. “We’ll get Abby’s B drawn, and if her counts are high enough, she can start treatment Thursday.”
Days like this are typical for the Boones. In the car early in the morning. Out of the car for an appointment. Back in the car. Out again.
“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. Then, Abby’s face lights up. She sees a pink chair—perfect for her new desk.
“Mom, this will look so good in my room,” Abby says. The price is right, and Kim is thrilled to make her daughter happy. For Kim, it’s the little things that make a big difference.
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’s lost most of her hair because of treatment. Today, little bits of glitter—remnants of a shirt worn the day before—catch the light from her bare head as Abby talks about all the things she can’t wait to do. Go on a cruise. Go to Hawaii. 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.
“Where do you think you want them to take the B today?” Kim asks. Abby points down at her left arm. “No, honey. That arm’s already bruised.” 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. As one of the lab techs examines Abby’s arm, she tells her she might have trouble finding her vein there.
Abby is scared. A past blood draw from her hand was painful, and she hasn’t forgotten. She tells the tech to try the arm first. They count down from three, two, one.
The vein is too small. Abby cries loudly and reaches for her mother as the tech speaks softly to her and begins the draw from her hand. Her mother soothes her. And then it’s done.
Kim hates seeing her daughter in pain, but knows she has to be strong for her.
“She feeds off my emotions. She’s so tired of being stuck with needles. I know that. But if I break down, we’re done for,” she says. “That’s not to say that I don’t go home at night and lose it when she’s not around.”
The news is good. Abby’s counts are high enough for her to begin her new treatment round at the Aflac Cancer Center. Kim high-fives 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.
Abby and Andy spent the day before with friends. They went to lunch. They went to see Mr. Popper’s Penguins at the theater. They had a good day, Kim says. But today will be long.
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.
Today, Abby will be sedated while she receives a spinal tap. The medication will enter her spinal fluid to keep cancer from hiding there. As she receives the anesthesia, she counts up from one, two, three. She only makes it to 17 before she’s asleep.
It’s only about 10 minutes before she’s awake again—and asking for chicken nuggets. She’s had to abstain from eating since the night before, so she begs Jamey for her favorite food.
“Thank you. You’re the best daddy in the whole world ever,” she says as he leaves.
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 will be in the hospital until at least Sunday. She’ll have 24 hours of chemotherapy and will be discharged when the medicine reaches a safe low level in her body. Abby is taken in a wheelchair through the hospital to her room, clutching her nuggets. Kim and Jamey start unpacking and settling in for the next few days.
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.
Abby’s medication is a new one for her, and the effects are already taking a toll. She vomited twice overnight and today can barely keep her eyes open. Kim and Jamey switched places this morning, and he headed back home. Kim’s aunt and uncle drove to Atlanta from Virginia to help the family and take care of Andy. Now,
they’re visiting Abby while she plays a board game with her brother.
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. “If Andy gets invited to a birthday party, we do everything in our power to make sure he can go. We have family game nights and family movie nights. We don’t want it to be all about leukemia.”
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 and her parents will spend the next few days taking laps of the hospital, visiting fellow patients they’ve gotten to know and hoping to go home as soon as possible. The Boones have spent a lot of time at the hospital lately. A high fever recently led to a 10-day stay and forced Abby to miss Camp Sunshine—a special camp for children with cancer.
Kim knows all of this is just a step to their ultimate goal—making sure Abby is cancer-free.
“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.”