Evans Culpepper experienced a relapse of acute lymphoblastic leukemia (ALL), a cancer of the blood, when he was 8 years old. He needed a bone marrow transplant. While confined to his hospital room at St. Jude Children’s Research Hospital, he learned how to play chess.
Justin Gardner, a teacher and school liaison in the St. Jude School Program by Chili’s, taught Evans the game.
“Evans was in such pain,” says Evans’ mother, Malise Culpepper. “He was on a morphine drip. He couldn’t do math, but chess was a great way for him to use his brain.”
Today, 14-year-old Evans is back at home, leading an active life and attending eighth grade with his friends.
The treatment for ALL and other pediatric cancers can affect learning and thinking. Patients often need Individual Education Plans (IEPs) or 504 Plans, which are required by federal law for students with specific educational needs. Evans has such a plan.
“He needs a little more time on math,” Culpepper explains.
In fact, Gardner often recommends extra time for assignments and tests, including standardized tests such as the ACT and SAT.
“I’m trying to advocate for our patients,” says Gardner, describing his work as a school liaison. “Advocacy is particularly needed during school transitions.”
For example, the transition from elementary to middle school can often result in a lapsed IEP or 504 Plan when parents and school officials opt to discontinue the plan for an ostensibly healthy child. But the cognitive late effects of cancer treatment—from chemotherapy, radiation or surgery—can still interfere with learning.
Fortunately, school transitions for Evans have proceeded without difficulty—thanks, in part, to the liaison work of Gardner.
“Anything for Justin,” responded a grateful Evans, when his mom asked if he wanted to be in this story with Gardner.
“He got me to where I am. He put in the time for me, so I’m putting in the time for him.”
From Promise, Spring 2018