When 7-year-old Owen Knight had his first brain surgery at Seattle Children’s Hospital, 15 family members gathered in the waiting room.
On Tuesday, the Linwood Elementary first-grader went in for a second emergency brain surgery because of a tumor – but with only one parent near him at any given time under COVID-19 restrictions.
His mom, Taylor Brayton, and dad, Josh Knight, are trading times each one of them is in the Seattle hospital by his bed or in the waiting room. Sometimes, it might require sitting in a parking lot.
“Under COVID restrictions, Seattle Children’s is allowing one parent at a time, thankfully, so his dad and I are going to do split shifts. He’s going to take nights, and I’m going to take days,” Brayton said on April 30.
“I have to leave the hospital before Josh can even enter.”
About a week ago, she arranged a drive-by parade in front of her Spokane home so Owen could see the support he has. It drew 304 vehicles with family, classmates, teachers and community members.
Owen is used to being around a big family that includes his mom, stepfather, Justin Brayton, and 9-month-old sister Emersyn in Spokane. He also regularly stays with his dad, stepmother Alyssa Knight and brother, Eli, 3, who live in Moscow, Idaho.
“They came to the parade,” Taylor Brayton said. “We’re all in the picture, and we all get along.”
For recovery in Seattle, her son was scheduled to spend a brief time in the pediatric intensive care unit, then three to five days in a hospital room.
Owen’s first surgery on Oct. 15 removed most of a brain tumor, but surgeons decided they couldn’t risk removal of a fragment, Brayton said. Recently, the family learned the small portion had grown.
“They took most of the mass out before, but they had to leave just one little piece because it was sitting right up against the part of the brain that controls vision,” she said. “The risk didn’t outweigh the benefit at that time.”
This time, a neurosurgeon told the family, “They’re going to get all of it regardless of the risks, so we run the risk of visual impairment.”
On Wednesday, Brayton said in a text that her son’s surgery went better than expected. “He’s rocking recovery. They’re already scheduling him to be transferred from ICU to the regular floor today.
“His surgeon, Dr. Hauptman, said he was able to get what he thinks is 99% of the tumor, if not all, even what was behind the vision part. He said it was an extremely aggressive surgery, but he feels very optimistic.”
Her son’s medical concerns began last summer when Owen started having severe headaches, was vomiting and had to stay in dark spaces. She took him to a pediatrician.
“They told me that it was him developing migraines and for me to keep a migraine journal, but I didn’t buy it,” Brayton said. She followed instructions, but a history of migraines doesn’t run in the family.
Brayton asked for brain imaging.
“They didn’t listen until September 2019 and finally gave us an MRI, and then four days later we got a call to take him to the emergency room. They said there’s concern they saw on the MRI.”
It led to the referral to Seattle Children’s and the decision for the October surgery to remove the tumor in his right temporal lobe. A biopsy result found that the tumor wasn’t cancerous.
“His recovery was amazing,” Brayton said. “He was back to school within two weeks. They considered this a surgical success, so they would want a follow-up MRI every three months just to monitor.”
COVID-19 emergency care
Navigating around COVID-19 cautions, the recent news about Owen’s condition hit hard. On Feb. 13, he had his first routine MRI before the restrictions had hit.
“From October to February, there were no seizures, no headaches, no pain,” she said. “Then the MRI in February showed growth on the tumor already, the part they had left. We weren’t expecting that.”
Another MRI was scheduled for May 5. “Then COVID-19 hit; I was laid off March 16,” she said. Family members followed quarantine, but Owen’s condition got worse in April.
The Monday after Easter, Owen started having visual and audible hallucinations, physical aggression, severe sensitivity to sound and extreme emotional highs and lows, Brayton said.
“I was on the phone with his team of doctors in Seattle starting that Tuesday night until 12:30 a.m. Wednesday, with several hours of calls back and forth, consultations, waiting and talking. They referred him to an MRI in Spokane for that Friday, April 17.
“With COVID, it was tricky. We have a baby; we’ve been on full quarantine, and, yeah, it was terrifying.”
The MRI was at 8 a.m., and by 4:05 p.m., she got a call from his neurosurgeon.
“He was saying that the tumor had grown significantly since February and that we needed to come to Seattle,” she said. “This was not an elective surgery; it’s considered emergency surgery, which is allowed under COVID-19.”
Parade in Spokane
To help encourage Owen, his family organized the Spokane parade. Brayton sent an email to his teacher asking to get the word out. News spread on Facebook.
On April 29, vehicles set out from Linwood Elementary by 6 p.m.
“This is a really scary time for us, so we’re focusing on the positive,” Brayton said. “That’s why we did the parade. I planned it to lift Owen’s spirits, and it did wonders for all of us. It was amazing.”
The parade included Spokane Fire District 9, Sheriff Ozzie Knezovich, an American Medical Response unit and officers in about 10 sheriff’s cars.
“There was Otto from Spokane Indians and a guest appearance by Captain America himself on a motorcycle; he’s a favorite of Owen’s,” she said. “Make-A-Wish was there and Spokane Ronald McDonald House, teachers and staff from Linwood and his classmates.
“I wanted him to know all these people are thinking of him. He said it was probably the biggest parade in all of history.”
Although Owen had a brief seizure at the start, the group paused briefly. He then got to see everyone, she said. His response at the end just about made her cry.
“He looked at me and said, ‘Mom, I think I’m ready for brain surgery.’ I could have broken down and bawled right in front of him if I’d let myself. He’s a 7-year-old boy, and he looks to his parents, ‘Should I be scared, worried, nervous?’ If we are, that’s what he’ll be.”
Owen’s father drove him over to Seattle because their son had to be at the hospital on Monday at least 24 hours before surgery. “They have to swab him for COVID.”
Because of the pandemic, a stay at Ronald McDonald House couldn’t happen.
“I had called the Ronald McDonald House, and they’re closed,” she said. “My husband Justin and Emersyn will be there, but they’ll be in a hotel, so I can at least see my daughter at night.”
During Tuesday’s surgery, a sample was sent in for a biopsy, and it came back as the same type of benign tumor, Brayton said, so unless pathology comes back differently, monitoring every three months with a MRI is again the plan.
The family’s sendoff in Spokane was a comfort, she said, adding that she hasn’t seen anything like the community support shown to them by Spokane residents. “We’re so blessed to be here.”
Subscribe to the Coronavirus newsletter
Get the day’s latest Coronavirus news delivered to your inbox by subscribing to our newsletter.