Local boy diagnosed with brain tumor, fighting for his life at St. Jude Children’s Research Hospital

A local 3-year-old boy, Nathan Johnson, is fighting for his life after being diagnosed with brain cancer. 

A GoFundMe has been started to help cover the boy's unexpected medical expenses.

News Channel 3’s Madison Weil spoke with the boy’s mother, Mandy Johnson, about his prognosis. 

Johnson shares that Nathan’s first symptoms began in May. 

“Well he had been having some nausea and vomiting,” she said. Shortly after, she noticed he began having issues with his balance and muscle twitching in his face. 

“I was looking at him straight-forward from the couch and I could tell his eyes looked crossed,” she said. 

After going to two separate valley hospitals that misdiagnosed him, she took him to Rady Children’s Hospital in San Diego.

“They did the MRI and they told us it would only be 45 minutes...but two hours later...they still hadn’t brought him back,” she said tearfully. “The nurse called and said they had to do extra imaging.” 

She says a neuroteam gathered and explained their son’s diagnosis: “He had a brain tumor. We never, ever in our wildest dreams thought that’s what it would have been.” 

Nathan was diagnosed with an incredibly rare form of brain cancer: craniopharyngioma. The doctors said he had a tumor the size of a plum sitting on his pituitary gland — the gland responsible for the growth hormone and other vital functions. 

Just a day later, Nathan underwent surgery in San Diego. The doctors said they were confident that they got 99% of the tumor. But on the three-month follow-up visit, scans revealed there were two spots indicating the tumor was still there.  

“At four months...he still isn’t himself,” said Mandy. He’s gained 30 pounds...he can’t do everything physically that he used to do.” 

But Mandy says little Nathan never gives up. His strong personality shines through. He still loves to read his books and even sings along with his parents between treatments. 

Knowing the tumor would likely grow back, they began searching for more options. They turned to St. Jude’s hospital in Memphis, Tennessee. After careful review, St. Jude accepted Nathan’s case. 

The valley family has been there for three weeks now. They arrived with the intention of starting Nathan on a treatment called ‘proton radiation.’

But, before they could begin, Nathan had another terrifying setback: while sedated, he began vomiting. 

“While they were trying to suction him and give him air...he went into cardiac distress. They had to code him. All last week we were in the ICU,” said his mom. 

She says they’re now waiting for Nathan to regain strength before trying again. Their family is praying that the radiation therapy will provide the miracle Nathan needs to live a normal life. 

Mandy explains she hasn’t been back to work since this began last May. She typically works as a nurse in the valley. Her husband Heith has had to take off significant time from work as well. 

While the medical bills thus far have been extensive, Nathan will also likely need growth hormone supplements for the rest of his childhood. A monthly supply can cost $4,000.

If you’d like to contribute to help the family cover Nathan’s unexpected medical expenses and the future treatments the boy will need to recover, you can visit their GoFundMe HERE.