LEWISTON, ID - Described as a kind, loving, and silly blue-eyed little boy, Cohl Johnson had physically already been through so much in his short three years. For months he had seen medical professionals for intermittent headaches and leg weakness, and the symptoms progressively got worse until he was taken to St. Joseph Regional Medical Center's emergency room on July 14th.
Cohl's tiny body was wracked with pain. He was screaming with an excruciating headache and was unable to stand. Following an initial CT scan, Cohl's mother, Kimberlee, says they were rushed by ambulance to Sacred Heart Children's Hospital in Spokane where he underwent an MRI.
Doctors discovered the culprit of Cohl's serious and painful health issues - a rare Cerebellar Juvenile Pilocytic Astrocytoma that was pushing against his spinal cord and blocking the normal flow of cerebrospinal fluid. In addition, he was found to have a fluid-filled cyst.
Emergency surgery was scheduled for 8:00 a.m. the next morning. Surgeons removed the eight-centimeter mass that took up nearly the entire space on the back side of his brain.
"They were able to get all of the tumor. Thank goodness. They were only able to get a portion of the cyst out that was pressing on his spinal cord but there was a portion that had attached near the brain stem & they just cannot safely remove it without the risk of him bleeding out or facing severe deficits," Kimberlee says, adding that it is being closely monitored.
"He currently has a drain placed that is draining the fluid that still remains in his brain," according to a friend who set up a fundraiser to assist Kimberlee as she traverses the ups and downs that will fill an unknown future for her beloved son.
Cohl is scheduled for a second surgery on Thursday during which a surgeon will place a permanent shunt so the drain can come out and they can ensure the proper flow of his CSF.
"Right now any possible deficits are unknown," Kimberlee says. "He has a long road ahead of him but I couldn’t thank everyone enough for all the prayers for my baby."
"The last few days have been a bit rough," Kimberlee admits. "Cohl was slowly removed from the ventilator and extubated. He is still waking up and tolerating everything fairly well. He has a lot of agitation, which is to be expected."
"He has right-sided weakness and some tremors, but no seizure activity," Kimberlee adds. "He has been able to vocalize his wants and needs a little bit. He will nod when he is in pain and has said yes & no. He told his nurse “I don’t like that” and was able to vocalize that he wanted to watch SpongeBob and Lion King."
Cohl, the youngest of Kimberlee's three children, will need continuous care. She does not know when she will be able to return to work.
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