MARTINSBURG, W.Va. (AP) - A 6-year old boy from Martinsburg endured nine-and-a-half hours of surgery in February to remove an extremely rare tumor growing on his brain stem.
To help with medical bills, the community is now coming out to support the family through the healing process.
Emari Olson is a quiet, observant little boy most days according to his parents, Edward and Rachel Olson. For Rachel, it was a complete shock when doctors found the tumor on her son’s brain.
Emari complained of a headache and had been diagnosed with strep throat in February, but Rachel felt something else was wrong with her son. She took him to Winchester Medical Center to ensure Emari was healthy, and a brain scan revealed a rare brain tumor growing on his brain stem.
The tumor - called an inflammatory myofibroblastic tumor - is so rare that there have only been 10 studies reported on it, and Rachel said Emari’s neurologist had never seen a tumor of this variety before.
Emari was immediately taken for surgery after the brain scan. The surgery lasted nearly 10 hours, according to Rachel, and Emari had to stay in the hospital for two weeks and five days after the surgery.
“Emari is recovering better than expected,” Rachel said. “Doctors said he might have a hard time speaking or one side of his face might droop, but so far he’s doing pretty well.”
The surgery wasn’t without its complications, however. Emari had to have a feeding tube installed after the surgery because of nerve damage that doesn’t allow him to swallow properly. Although Rachel is hoping the complication is temporary, doctors have said the long term effects are hard to predict.
“They said every brain surgery is different and every recovery is different,” Rachel said.
Although it’s hard for doctors to predict the outcome, past reports suggest the tumor will not recur as long as it was removed in its entirety. To make sure Emari is healing, however, he will go every three months for an MRI.
“It’s been hard,” Edward said. “I can’t really describe it. I’d rather it was me than him.”
Emari’s four-year old little sister Nahla is excited to have her big brother home, according to Rachel and Edward.
“She’s been very protective of her big brother. She’s been a big trooper the last few weeks,” Rachel said.
Rachel is glad Emari is home and recovering, but she’s worried about the medical bills that will follow the ordeal.
“We haven’t officially gotten the bill yet, but we know it won’t be completely covered by the insurance,” Rachel said.
Right now Emari’s family is also trying to find a way to go for a follow up MRI the insurance is not covering.
Although Rachel works at the Bureau of Alcohol, Tobacco, Firearms, she has had to take off work to care for Emari who needs constant care while hooked to the feeding tube.
Edward and Rachel said the support from coworkers, family and members of their church - City of Hope Church - have helped get them through their difficult time.
“I’m not really used to getting so much attention, but we’re all thankful for the sacrifices of time, money and prayers people have made to help us, prayers especially,” Rachel said. “Prayer and our faith in God has gotten us where we are today.”
Emari’s kindergarten teacher Haley Jones from Berkeley Heights Elementary School has been a huge help for the family as well. Rachel said the doctors have recommended home care and home schooling for now, and she said Jones has volunteered her time to continue teaching Emari.
Jones also came to visit Emari in the hospital and offered prayers for the family.
In addition to co-worker organized bake-sales, a gofundme page and a spirit night fundraiser at the Martinsburg Chick-Fil-A recently, Rachel said she’s been amazed by the community support.
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Information from: The Journal, https://journal-news.net/
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