What's Best For Brayden A mother's quest leads to a Houston neurosurgeon - and one of the hardest decisions of her life

What's Best For Brayden A mother's quest leads to a Houston neurosurgeon - and one of the hardest decisions of her life

A cell phone alarm sliced through the quiet at 3:15 a.m., but Jessica Large was already awake. She'd been lying there, more than 2,000 miles from home, praying she and her husband were making the right decision.

A room away, their 11-year-old son began to stir. So did the pain. His constant companion.

Nobody knows when the cyst in Brayden's brain began to grow. Maybe it was first grade, when he noticed a subtle but consistent throb in his forehead. Maybe it was a few years later, when he'd sometimes wake up so nauseous and dizzy, he'd spend the entire day in bed.

It finally revealed itself in December, a gray smudge at the center of an MRI scan. The growth just above his brain stem was no bigger than a dime and, according to the neurologist they saw in Seattle, totally harmless.

Pineal cysts don't cause headaches or vomiting, that doctor had said. Brayden's problems were unrelated, probably the result of a vitamin deficiency. He seemed to laugh when Jessica mentioned that she'd read on the Internet about a neurosurgeon in Texas who specializes in removing pineal cysts. Operating, the Seattle doctor told her, could only hurt, not help Brayden.

As they stood to leave the office that day, Jessica leaned toward her husband, Jeff, and whispered: "We're going to Houston."

Now, four months later, she was standing at the kitchen counter of their short-term condo rental near the Texas Medical Center, re-checking the list of items Brayden would need after surgery: Earplugs, to block the sound of crying children in the recovery room. Sunglasses, to protect his sensitive eyes from fluorescent hospital lights. His King Louie stuffed orangutan, to remind him of home.

"We're doing the right thing," Jessica had said again and again as this day approached.

Doubt came in quiet moments. When she'd stare at the back of her son's head, knowing it would never look the same. When she found him, curled up on the kitchen floor a day before their flight to Houston, sobbing in fear of the operation she'd arranged for him.

Now the time had come.

"Shoes," Jessica said, setting her checklist aside.

Jeff, who'd been stroking his son's head, rose from the couch. Brayden laid down and covered himself with a blanket.

He popped back out a few minutes later: "Is it time?"

Mom just nodded, then stuffed King Louie into her overnight bag. A moment later, they headed out the door.

Across town, Dr. Dong Kim took a final sip of coffee before heading to the hospital for what he expected to be a typical Wednesday: Before noon, he planned to remove two more pineal cysts than most neurosurgeons remove in a career.

"That's not unusual for me," Kim said, after arriving at the Memorial Hermann Mischer Neuroscience Institute, where he's the director. "I sort of backed into this practice."

Pineal cysts, fluid-filled sacs that form near the center of the brain, are found in about 3 percent of people. Most of those who have them don't suffer noticeable symptoms, leading a majority of doctors to believe the cysts only cause problems if they grow extremely large, which is rare.

"That's what I was taught in medical school," Kim said.

Then, four years ago, a young woman showed up in his office with inexplicable symptoms: Constant head pain, blurred vision, subtle memory loss. The only abnormality in her brain scan: A pineal cyst.

"I'm not sure if this is going to help you," he remembers telling the woman and her mother, "but I'm willing to remove the cyst if you're willing to undergo the risk of surgery."

She agreed, and not long after, she reported feeling much better. The pain had faded. She had energy again. Kim was fascinated by her dramatic improvement but figured that was the end of it.

Weeks later, the phone calls started. From people all over the country. All of them apparently part of a pineal cyst support group on Facebook, where Kim's patient had shared her story. All of them desperate to find a doctor who'd listen to them.

Kim agreed to operate on one or two, at first. Then, as as he grew more confident in the procedure, a few each month. And now, four or five every week.

"I finally had to limit the number," Kim said. "I probably could have filled this clinic entirely with people with this condition."

Most of his pineal cyst patients have been adults. Brayden Large was about to become his youngest.

At his final pre-op appointment a day earlier, Kim had hugged the boy and asked if he was afraid. "No," Brayden had replied. "I'm ready to get this stupid thing out."

Everyone laughed.

Now he was balled up on his side in a hospital bed, wishing he'd answered differently. Wishing he'd never told anyone about the headaches. Wishing he was back in Blaine, Wash., with his little sisters.

"I'm so scared," he said, reaching for his mother between sobs.

A nurse tried to comfort him: "Don't be afraid. Once you go in, they're going to give you something to calm you down, and you won't remember what happened."

Won't remember. That was one of the fears Brayden had shared with his family's pastor, Justin Long, when they met over hot chocolate last month: "I'm afraid that after surgery," Brayden had told him, "I'm going to lose all of my good memories."

Another thing Brayden had confided: The pain in his head never fades; it hurts more than his mom even realizes. He'd been keeping that from her, Brayden had said, because he didn't want to give her more reason to worry.

Mom was worried now but trying to hide it as the nurse briefed her and her husband on what was about to happen. Jessica pulled out her cell phone: "Let's call Justin."

She put the phone on speaker. Dad placed his hand on Brayden's head as the pastor prayed: "God, I just pray for Brayden ... that even as he's nervous and scared, you would help calm him down ... help him to trust that you have his best in mind ... that he will be OK."

Will he be OK?

Jessica fought for two years to get him here. First a doctor said Brayden had a stomach ulcer. Another told her Brayden needed to go on a special diet. Brayden's headaches are genetic. Brayden's headaches are normal. Brayden is fine.

Finally, after a week of vomiting and tears around Thanksgiving, Jessica had had enough: "You're missing something," she'd told Brayden's doctor. "There's all these things going on, and it's all pointing to his brain. We need an MRI."

If not for her, doctors never would have found the cyst. Still they dismissed her concerns. "I am his mother," she'd told one. "I know what's best for my kid."

Now it was time to sign the consent forms, acknowledging that hospital staff had discussed all the ways this elective brain surgery could — in rare cases — hurt him.

Infection. Vision loss. Stroke. Death.

"Do you have any questions at the last minute?" one of Kim's assistants asked.

Jessica looked up from Brayden, her eyes damp.

"No. Let's do this thing."

King Louie, a stuffed orangutan that came into the operating room with Brayden, is propped up in the corner as the medical team readies him for surgery. King Louie, a stuffed orangutan that came into the operating room with Brayden, is propped up in the corner as the medical team readies him for surgery. Photo: Elizabeth Conley, Houston Chronicle Photo: Elizabeth Conley, Houston Chronicle Image 1 of / 25 Caption Close What's Best For Brayden 1 / 25 Back to Gallery

In the waiting area, Jessica slumped over on a bench, closed her eyes and tried not to think about what was happening down the hall, in operating room 34.

There, Brayden lay facedown and unconscious on a table. Dr. Wes Jones began to shave the back of his head. Jones, a neurosurgeon and Kim's chief resident, has been working with him for several years.

"We do a ton of these," Jones said as he wrote on Brayden's head with purple marker.

An anesthesiologist studied a monitor, watching to make sure he was getting the right concentration of drugs. Brayden was now completely covered under blue and green sheets, save for a 6-inch patch of exposed scalp.

Jones called "time out" at 8:31 a.m., a standard safety pause before officially beginning. Then he ran a scalpel over the purple line, cutting into flesh.

A few feet away, a nurse propped the stuffed orangutan on a stool. His King Louie. Brayden had been carrying it everywhere for weeks.

He'd played the "Jungle Book" character in the school play earlier this spring, a brief distraction from the nightmare. Rehearsals, Brayden had told his mom at one point, were the only times he felt "like a regular kid."

On the night of the performance, after he'd sung his solo — "Oh, oobee doo, I wanna be like you" — the teacher had called Brayden to center stage, and the entire audience stood to applaud. They all knew what awaited him in Houston.

Now the operating room filled with the sound of a drill cutting into bone. A moment later, Jones handed a 1-inch piece of Brayden's skull to the scrub nurse, and a technician moved a surgical microscope into place.

"OK, here we go," Jones said, and went to work clearing a pathway to the center of the boy's brain: He cut through an outer protective layer. Maneuvered his microscopic instruments between the brain's two hemispheres. Made an opening in a membrane that separates Brayden's visual processing center from the section of brain that controls his muscle movements. Finally, after an hour, a white glob of tissue was visible on video monitors.

"That's it" Jones said as Kim entered for the most critical portion of the operation. A nurse helped him into his scrubs.

"What makes this surgery so tricky," Kim said, taking a quick look at Brayden's MRI, "is that our access channels are very narrow."

He pressed his eyes to the surgical microscope and described what he saw.

"That down there. You see that whitish structure. That's the brainstem."

"This area here. That's the bottom of the cyst."

Kim called for a pair of electrical forceps. "On," he told a nurse, and the tool buzzed to life, sending a current into the cyst, cauterizing it. "Off."

"Now I'm going to dissect the right side."

"On … Off."

"When I first started doing this … On ... Off ... this part, the critical portion of the surgery, probably took an hour or an hour-and-a-half. On."

Now, Kim said, after doing so many, it takes him about 20 minutes.

He'd been working for about 10 when he reached in with tiny scissors and began to cut into the cyst. He dropped a tiny piece of it into a dish: A sample to be tested in a lab.

"I've now removed 90 percent of it," Kim said. "I get rid of 100 percent, that way it won't come back."

He reached out his hand and called for an ultrasonic aspirator, then lowered the tip of it inside Brayden's head. The device shoots sound waves with such intensity, it disintegrates tissue while simultaneously sucking it out through a small tube.

"On," Kim said, and the device beeped to life. "Off." It seemed to obliterate the white matter on the video monitor.

"I know this looks easy," Kim said, going back in with the aspirator, "but if I cut one of the arteries, it would be a catastrophe."

"On ... Off ... On ... Off ..."

"OK," he said minutes later. "We're all done."

Kim pulled off his gloves while Jones went to work closing the hole in Brayden's head.

"Now," Kim said, before stepping out, "we'll have to see how he does."

Awhile later, Kim walked to the waiting area, a surgical mask hanging from his neck, and bent to give Jessica a kiss on the cheek: "Are you ready to see Brayden?"

She stood to follow him.

Within a day, her son would be up and walking. A week from now, the boy would tell doctors the pain had all but faded, that the surgery had worked. But the truth is, months will pass before anyone knows for sure.

Early on, Kim said about 60 percent of his patients felt better after having a pineal cyst removed. Now, as his team has gotten better at identifying who could benefit from surgery, it's more like 90 percent. He hopes Brayden will add to his growing body of evidence, which he plans to publish later this year in an effort to convince other physicians.

As the head of neurosurgery at UTHealth's McGovern Medical School, Kim is already passing on what he's learned to medical students and residents in training. "Hopefully soon," he said, "there will be more help for people."

Kim led Jessica and Jeff to the recovery room, where Brayden was stirring. "He's waking up just fine," Kim said, then left them.

"Brayden, do you hear mama?" she said, grabbing his hand.

Brayden nodded, without opening his eyes.

Jessica knelt down and stroked his face while Jeff stood at the end of the bed, rubbing his son's foot. "It's over," she whispered. "We're done sweetheart."

Brayden, loopy from the medication, mumbled incoherently for several minutes. Finally, he choked out a few hoarse words: "Can I … feel ... my scar?"

"No, Brayden," Jessica said, laughing.

The recovery room nurse had some questions:

What's your first name?

"Large."

What year is it?

"2016."

Do you know who the president is?

"Donald Trump."

Brayden opened his eyes a crack and noticed King Louie sitting at the end of the bed. He reached down for him, then stammered through a few lines from his solo: "I wanna walk like you … Talk like you, too ..."

Brayden had so much riding on this. He hoped that, without the cyst, he'd go back to playing hockey. That he would regain balance and get over his fear of heights. That he'd be free to play outside with his friends and lose some weight. That his grades would improve.

After a quick call to his sisters, Brayden looked up at his mom: "It's finally over," he said, half asleep. "I can finally be a kid now."

"That's right, sweetie."

He reached up and grabbed Mom's hand: "This was the right decision," he said.

"Yes buddy," Jessica told him, crying again.

"You're going to be better now."

Mike Hixenbaugh writes about health care and medicine for the Chronicle. Follow him on Twitter and Facebook. Send him tips at mike.hixenbaugh@chron.com.