Relay for Life Honorary Survivor: Emily's story
A young girl’s battle with cancer was chronicled in the West Central Tribune almost four months ago. At the beginning of the story, the reader was led to believe that Emily Johnson was like any other child: a doll collection, an affinity for the Power Rangers, an underdeveloped palate.
But then, her cancer, stage 4 neuroblastoma, which affects 700 children in the U.S. each year, was introduced. At age 4, it forced her to temporarily leave her home and lose her hair.
The cancer entered remission April 29, 2015. Her hair once again covers her 5-year-old skull, and she will start kindergarten this fall. Oh, and she was named one of two Kandi-
yohi County Relay for Life honorary survivors for 2015.
Despite much welcome spring news, Emily will have spent over half of her life battling cancer if she is to survive it. Two-thirds of children diagnosed with neuroblastoma between ages 1 and 4 live past the “five-year mark” — the standardized benchmark indicating that kids have a chance to live cancer-free.
During her remission diagnosis, Emily will visit doctors every three months for MRIs and bloodwork to monitor the cancer’s progress or, hopefully, lackthereof.
After that, the timetable is uncertain.
“They don’t let us look too far ahead,” Emily’s mother Shelly Johnson said. “They don’t want us to stress too far into the future, which is hard for me because I’m a planner.”
Shelly said that while the remission news was welcome, doctors have not yet bettered her odds of a five-year survival above that 68 percent clip.
“They haven’t updated it any,” she said. “I wish they would, but, you know ...”
The odds may not have changed, but Emily has. While she is not perfectly healthy, she is about as close as she’s going to get.
“She looks more like a typical kid, has got a good appetite and lots of energy,” Shelly Johnson said. “I’d say she’s fairly healed and recovered from everything.”
She limps slightly thanks to nerve damage which resulted from her treatment. She has moderate-to-severe hearing loss in both ears. She cannot understand all letters perfectly, leading to miscomprehension of some words. Hearing aids help but, but they don’t solve every issue.
It is difficult to search for silver linings, but they exist. For one, she was named an honorary survivor. Secondly, she has developed an emotion that some adults struggle feeling: empathy.
“If she’ll see somebody in a wheelchair at the store or something, she’ll say ‘Oh, I wish that person wasn’t sick, I wish they didn’t have to go to the hospital,’” Shelly said. “(She is) more aware of it now.”
Third, the Make-A-Wish Foundation granted her desire: to go on a Disney cruise. The family leaves for the Bahamas in February. If her cancer is still in remission then, Emily will have gone nine months without cancer growing.
“It’s not the easiest (cancer) to get in remission, but she was able to do it,” Shelly said. “It’s quite the feat that she did. She’s amazing.”
So Emily will be honored Friday at the Kandiyohi County Relay for Life event. Not soon after, school will be underway. She can’t wait.
“She’s just ecstatic about it,” Shelly said. “She talks about it all the time and tells everyone ‘I’m going to start kindergarten in the fall.’”
Emily is strong enough to battle cancer but young and innocent enough to look forward to school. Her mother is right: she is amazing.
RELAY FOR LIFE tab: For more on the Relay For Life event Friday, July 24, see the special tab in Saturday's paper.