On Thursday, Luke Johnson celebrated his 17th birthday with cupcakes, a snazzy birthday cap and a spinal tap.
“He’s kind of hoping the anesthesiologist is like a little generous so he can get a little bit longer nap,” his mother Patty Wimmer-Johnson half-jokes on the day before the procedure.
Luke has Acute Lymphoblastic Leukemia. It’s one of the most common forms of cancer among children.
It’s not a disease to be taken lightly. But for Luke, a little laughter is good medicine.
“What gets me through a lot of it, is just keeping a positive attitude, a little bit of goof-balling really,” he said.
In the past, he’s jazzed up his treatment days with pirate costumes, gas masks, and Bob Marley accents. Once, he dressed as a construction worker and led hospital staff in the YMCA chant.
“It’s usually like a frat party that went horribly wrong,” Patty said. “It’s serious, but with a whole lot of humor.”
And it’s become a way of life for the Wimmer-Johnsonhousehold.
Luke was diagnosed with cancer about two years ago, just days before his eighth-grade graduation.
“It changed everything,” he said. “It’s hard to explain. I just don’t have words for it.”
Patty has a word for those first few moments when the doctor returned with the news.
“Panic,” she said. “I just couldn’t wrap my mind around the fact that some man was telling me that my child had cancer, who was perfectly healthy and had played in a band concert the night before.”
It would be the last school concert Luke would play over the next two years. He had to give up playing the trombone due to the disease.
That was one of the first of many changes.
Chief of Hematology and Oncology at Nemours Children’s Clinic Dr. Eric Sandler has seen these changes play out in families for more than a decade. He’s part of the team that works with Luke and his family. He said the medical center sees about 90 new cases each year. Nationwide, every year about 16,000 children are diagnosed with cancer.
“It affects every aspect of the child’s life, but it also affects every aspect of the family’s life,” Sandler said. “Oftentimes, a parent will have to stop working, which causes all kinds of issues for the financial resources of the family. Families have other children that have to be taken care of.”
For Patty, a single mom, it’s been hard to find steady work with flexible hours to accommodate Luke and his younger brother Matt, who also has special needs.
For Luke, it’s meant not only dealing with the disease itself, but doing so while navigating the academic and social complexities of freshman year in high school.
By the time he started at Robert E. Lee High, he’d lost most of his hair due to chemotherapy. He also often wore a filter mask when outside or in large crowds, and he couldn’t carry a backpack due to the port placed on his chest. In the hallways came stares and questions, he said.
“I had to explain to at least 20 people within the first three weeks of starting at Lee what I had and that it was not contagious,” he recalled.
And then, there are the missed days of school for treatment, physical therapy or days when his infection-fighting white blood cell count is just too low - a condition known clinically as neutropenia.
He spent his birthday week at home because the school was administering FluMist vaccinations.
“Although it’s a low percentage, there still is a possibility that the FluMist could make Luke very, very sick,” his mother said.
He makes up for a lot of the lost learning through a partnership between Duval County Public Schools and local health providers known as the Hospital/Homebound program.
“If the students can’t go to school, the teachers will come to the student,” said Sandler.
Luke said he’s spent about half of the last two school years out of the classroom due to the disease. And that’s easy not for the active student who plays golf for the school’s team, and enjoys history, chemistry and JROTC.
“Some weeks, he feels great. He goes to school and life is good,” Patty said. “Other weeks, he doesn’t feel so good… gets overtired and he’s too sore to go to school the next day to sit at a desk, and he’s not happy about that. He would rather be at school, learning from the teachers.”
But this birthday means something else for Luke: his last year of treatment. By his 18th birthday, he’ll be celebrating the end of it.
For other children just beginning their journey with cancer, he has a message: keep your head up and keep laughing.
“It’s going to be tough,” he said. “You’re going to be going through a lot garbage, for lack of a better word. Just try to add a little bit of comedy into it. It makes it better. It makes it a whole lot better.”
September is National Childhood Cancer Awareness Month. To find out ways you can help children across Jacksonville visit CureSearch Walk.
You can follow Rhema Thompson on Twitter @RhemaThompson.
