Woman looks back on battle with leukemia

Editor's Note: This is the last in a series of stories in conjunction with Childhood Cancer Awareness Month.

Krystal Bartoe has dealt with leukemia for about 10 years. Since undergoing a bone-marrow transplant in 2012 and receiving a cancer-free declaration from her doctors, Krystal says now she's just trying to figure out what she wants to do with her life.

Krystal, a 19-year-old from Altenburg, Missouri, was diagnosed with acute lymphoblastic leukemia. Commonly known as ALL, it's an invasive cancer of the blood that starts from white blood cells called lymphocytes in the bone marrow. It's the most common type of cancer in children.

She remembers the time just before her diagnosis at 9 years old. She went to her parents one day, telling them she thought she might be sick. At first, they joked she must be trying to get out of school, but they soon realized the sincerity in their daughter's complaint.

"When I stood up, my mom said she could see my heart beating through my chest," Krystal said.

After moving to Missouri from Georgia, she started receiving treatments in St. Louis. Most recently, she received care at Cardinal Glennon Children's Hospital. Krystal said it may seem strange to some, but she liked the hospital and even misses it in some ways.

She became close with many of the hospital staff. One of her main nurses had a baby a few months ago and Krystal, who tries to keep in touch, hopes to go visit them in St. Louis one day.

Cardinal Glennon also offered a few opportunities for Krystal to meet members of the St. Louis Cardinals baseball team, which she particularly enjoyed.

Family and friends

While Krystal and her mother, Maria Bartoe, now visit St. Louis once every three months for checkups, there was a time when they were making the trip three times a week. The summer Krystal received her bone marrow transplant, they spent several days in the city.

During those times, the family leaned on friends at home for support. Maria Bartoe owns the Mississippi Mud Saloon in Altenburg and said she had plenty of help keeping it up and running during the times she spent at her daughter's side in St. Louis. She also said she was fortunate to have a job that allowed her the flexibility to take extra days off.

"If I had a regular 9-5 job I couldn't have done it," Maria Bartoe said. "And I'm lucky to have such good employees to handle things while I was gone."

The summer of 2012 was a long one for Krystal and her mother as she recovered from the bone marrow transplant. She stayed in a special unit of the hospital because of her compromised immune system. Any visitors had to meet certain requirements for cleanliness and age.

The only person younger than 18 permitted to visit Krystal was her brother Lucous. Besides being her youngest visitor, he was also the donor for her bone marrow transplant.

Lucous, now 15, was previously staying with an aunt in Alaska, but came to Missouri to be with his sister. They found he was a perfect match for the transplant. While the procedure can cause the donor a small amount of physical pain and fatigue, Lucous still offered to be the match for his sister.

The post-surgery recovery process took a bit longer for Krystal. When she looks back at the time, she said what really stands out to her was the boredom.

"It was mostly annoying because I couldn't do anything," she said of the recovery period. "I couldn't eat certain things. I couldn't go out."

Uncertainty

Because of the transplant, Krystal is expected to stay cancer-free. While it's a goal she and her family have been hoping to one day achieve, now that it's been accomplished, Krystal said she's uncertain of her next step.

"I'm so used to having [leukemia]," she said. "I've had it since I was 9. It's just normal to me, I guess."

It would be tempting to many to become angry and bitter about such an unfair circumstance, but for Krystal it was just another part of her life. Of course, the cancer did take its toll on her school career.

"It's not like it wasn't hard [having cancer]. When I was in grade school and missed out on things like field trips because I was sick; that's when it was really hard," she said.

She'll also never have the chance to remember the ups and downs of high school. Krystal and her mother decided before her first year that homeschooling would be the best option for her high school years. She was bound to a wheelchair at the time and would have frequently missed days because of illness and doctor appointments.

Krystal said the online homeschooling classes did make it easier to squeeze in some work between the treatments and doctor visits, but it's not quite the same experience as walking from class to class in an actual school like her peers. While high school is an experience many take for granted, it's a luxury not afforded to those like Krystal who spent most of their teenage life learning medical jargon in hospitals and juggling treatments and prescriptions.

"I wish I could've gone to high school," she said.

She fell about two years behind as she went through treatments and recovery, but Krystal said she hopes to be finished by the end of October. But it's not just the homework she missed out on. Krystal has plenty to make up for socially as well, and her mother tries to make sure that aspect isn't forgotten.

"Now, it's just getting caught up on all she missed. I tell her, 'Go out. Go hang out with your friends,'" Maria Bartoe said.

Leukemia may no longer be part of Krystal's life, but it still managed to leave its mark. In 2009, she was receiving chemotherapy and steroids, which "didn't work well together," Krystal said, and caused pain and other problems in her ankles. She was walking on her toes for a while because it was less painful, but that caused additional issues that eventually led to a surgery on her left ankle.

Now Krystal said she's walking normally, even though she won't be running sprints anytime soon, but she's been receiving physical therapy in Perryville, Missouri, for the past year. Like Cardinal Glennon, Krystal made fast friends with her physical therapists and managed to find a silver lining.

"Therapy doesn't bother me," she said, smiling.

The future

She's still weighing the options for her future, but Krystal said there's one thing she knows she doesn't want to do: forget. She remembers the many patients she met during her hospital stays and what they go through as they work toward that cancer-free goal. It's an issue more people should be concerned about, she said.

It's frustrating to see how little people know about childhood cancer or how few opportunities there are to help raise awareness, Krystal said, but she plans to participate when she can. She's considering shaving her head in March, a time when many do so to raise awareness and funds for St. Baldrick's Foundation, a volunteer-driven charity dedicated to funding childhood cancer research.

She would also like to see more people observe September as Childhood Cancer Awareness Month, or at least become aware of its existence.

"People just don't know. They really don't," she said.

srinehart@semissourian.com

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