11-year-old battles aplastic anemia
MASONTOWN – Joshua Liston bounds out of his room with an armful of colorful jerseys. He sorts through them, naming each motocross rider whose autograph etches across the screen-printed number. The 11-year-old, with dimples framing his endearing smile, used to race motocross himself.
Now it’s just motocross on TV, said his mother, Tammy.
In early February, Joshua, a fifth-grader at Masontown Elementary, was horsing around with some friends in the hallway at school. In the midst of their playfulness, Joshua got pushed up against a locker, a push he said he hadn’t even felt. The next morning, where there should have been just a small bruise, if any, a huge black and blue mark had formed on his shoulder.
Feb. 6 became a date etched in the minds of all four members of the Liston family.
“When I took him to the pediatrician that morning, I still didn’t think it was that serious,” Tammy Liston said. “We thought it was going to be a simple trip … for some medication.”
The doctors at Children’s Hospital of Pittsburgh performed tests, and while he was in the hospital, Joshua’s white blood cell count started to drop, and then his red blood cell count followed.
Two days later, a bone marrow biopsy determined that Joshua had aplastic anemia, a rare disease in which his immune system attacks his bone marrow.
“They saw it happen to him before their eyes,” Tammy Liston said.
“Our first thought was leukemia,” said Jim Liston, Joshua’s father. “They ruled it out, and we were ecstatic, but they viewed this as being just as bad, if not worse.”
According to the Aplastic Anemia & MDS International Foundation, aplastic anemia is a very rare disease that occurs when the bone marrow stops making enough blood cells. It is estimated that 1,000 new cases occur each year in the United States.
Since Joshua’s case was severe, his doctors began treatment immediately. The Listons, who both took a month-and-a-half off work, traveled back and forth to Pittsburgh three times a week in order for Joshua to receive blood transfusions.
“It was devastating to all of us in the beginning,” Tammy Liston said. “Our lives turned upside-down.”
Joshua’s younger brother, Justin, who shares Joshua’s dark hair and deep brown eyes, was tested to see if he would be a match as a bone marrow donor. After more than a week of waiting for the results of Justin’s test, the Listons found out that Joshua would have to undergo alternative therapy.
“If Justin would have been a match, that would have been the best form of treatment,” Tammy Liston said.
Joshua underwent antithymocyte globulin (ATG) therapy for 17 days. ATG, a horse serum, is used in conjunction with other medication and steroids to help to suppress the immune system and allow the bone marrow to resume generating blood cells.
“At first I didn’t really notice it. About the fifth day, I started getting sick,” Joshua said.
In early March, Joshua began to be home-schooled, since he couldn’t be around other people while his immune system was being suppressed. He can’t race or even watch motocross live, because of the dirt involved. He is also unable to play baseball for his team this year.
“They said I’m still on the team,” Joshua said. “They gave me a hat.”
The energetic boy, who will turn 12 next month, has taken up golfing and bowling instead. He still enjoys fishing trips with Justin and his father.
Although he has completed the ATG therapy, Joshua remains on medication, which the doctors will soon discontinue. They will then do another bone marrow biopsy to see if his immune system wipes his bone marrow out again. If the treatment is unsuccessful, they will try it once more, and after that, the Listons must look for an unrelated, or outside, bone marrow donor.
“This is not a cure. It’s a treatment,” Tammy Liston said. “Even after they take him off the medication, it’s still going to be a few months until the doctors figure out if his counts are going to go back up.”
There is a good chance the Listons may never find out the cause of Joshua’s illness. Doctors will always have to monitor his blood to ensure he doesn’t go into a relapse, his mother said.
Joshua’s visits to the doctors at Children’s Hospital have been reduced to once a week. To verify that his counts aren’t low, his blood is tested an additional two days a week at Uniontown Hospital.
“The waiting to see if this is working or not is the hardest part – and Joshua not being able to do his normal things,” she said. “God willing, this treatment works. Then we only have to worry about it coming back again.”
They hope that everything will return to normal for Joshua next year.
“I think we’ve been very fortunate with it,” Jim Liston said. “When it all started, he (the doctor) said we had a 70 percent chance. It kind of shakes you up.”
“They say a positive outlook is everything, and Joshua has that,” Tammy said. “We’re fortunate to have Children’s Hospital around. It’s been overwhelming with the way that they are.”
The community has also lent a helping hand to the family. Several groups have held fund-raisers to provide assistance. During a blood drive held for Joshua, enough people pre-registered for three blood drives, Jim Liston said.
The Albert Gallatin Area School District has conducted several events to raise funds, including one that raised money to buy Joshua a laptop computer so he could do his schoolwork when traveling to and from the hospital.
And, on Friday from 5 to 8 p.m., Masontown Elementary School will host the Joshua Liston Unity Festival. Joyce Tracy, the school’s principal, spearheaded the project, along with a committee that has been organizing the effort.
“The community has been very, very supportive of the family and what’s going on,” Tracy said. “Joshua is a very nice boy, and a very bright boy.”
The teachers are all jumping on the bandwagon and being very supportive, as well, she said.
Many people have donated items for the event, including a football autographed by the Pittsburgh Steelers, and gift certificates to Nemacolin Woodlands Resort & Spa and the Boston Beanery.
“It’s amazing that so many people have come forward,” said Bob Stevens, co-chairman of the festival. “Local businesses and individuals have stepped forward and just done so much.”
“It’s really going to be something,” Tammy Liston added. “I’m hoping we can take Joshua, that the doctor says it’s OK that he can go.”