Jonas Ellwanger was watching a movie with his 4-year-old cousin when he began to have a splitting headache. It was around 8 p.m. the night before Thanksgiving 2019.
The then 13-year-old eighth-grader at Lively Middle School was spending Thanksgiving break in Burnet at his grandparents’ ranch.
With his head throbbing, he went to bed.
"My headache got worse," he says, and he closed his eyes. Minutes later, he opened his eyes and couldn’t see anything out of his right eye.
That was the last thing he remembered until weeks later in the rehabilitation unit at Dell Children’s Medical Center of Central Texas, where he was slowly recovery from an arteriovenous malformation, an abnormal tangle of blood vessels in the brain that disrupts blood flow and oxygen circulation.
The doctors and nurses who first treated him have called him "a miracle" and "a phoenix rising from the ashes."
Jonas simply says: "I lived."
When Jonas said he had a headache, his parents, Jay Ellwanger and Christina Westfall, give him Advil, let him rest and put a cold compress on his head. They thought he was having a migraine.
Then he vomited and lost control of his limbs.
They drove 10 minutes to the closest hospital, which was Ascension Seton Highland Lakes in Burnet.
He arrived around 10 p.m. Doctors there got a CT scan to look at his brain, stabilized Jonas and began talking to the neurosurgery team at Dell Children’s Medical Center in Austin.
The scan showed a big white area of blood that was 47 millimeters wide by 67 millimeters long. On the scan it looks like it covers about a fifth of the brain.
"It’s pretty dramatic to see the size of the bleed," says Jay Ellwanger.
The team at Highland Lakes was very somber, Ellwanger says. "They were being realistic about what they saw at that point."
The helicopter team was called to transport Jonas and his mother to Dell Children’s, with Jay and his father-in-law following by car.
The charge nurse told them that "the only thing you can do is pray," he said.
As the helicopter was coming in at 1 a.m. Thanksgiving morning, that nurse told him "sometimes miracles happen," Ellwanger says. "It’s something I’ll never forget. She wasn’t being hurtful."
She was being realistic. Jonas was non-responsive. His pupils were dilated. "It really was a miracle," Ellwanger says.
At Dell Children’s, Ellwanger immediately was met by the neurology team and Dr. Winson Ho, a pediatric neurosurgeon at Dell Children's and UT Health Austin.
"This hemorrhage was causing mass effect on the brain," Ho says.
They were worried about irreversible brain damage and Jonas’ unequal pupils, which is a sign that there is significant pressure in the brain stem, Ho says.
If they had not operated immediately to relieve the pressure, "he would have received brain damage," Ho says.
An AVM isn’t very common, but it’s the most common reason in children for having a brain bleed not caused by trauma, Ho says.
There’s nothing genetic about it. "By the luck of the draw, you have this acquired lesion somewhere that is a ticking time bomb," Ho says. "There’s no way to know ahead of time."
Typically kids with an AVM experience a very bad headache, nausea, vomiting and an altered mental state. "Usually, these things are not subtle," Ho says.
Sometimes if it’s a small bleed, they can go home within days. Jonas’ bleed was not small.
Ho told the Ellwangers what would happen immediately: a final CT scan before they took Jonas into surgery to remove part of his skull to relieve some of the pressure building in the brain. It would be the first surgical step of what would be many steps in six weeks of recovery at Dell Children’s and a yearlong watch for signs of more bleeding.
In that first four-hour surgery, they shaved Jonas’ head and removed about 75% of the left side of his skull. It was stored in a freezer at Dell Children’s to be reattached later.
When Dr. Ho talked to the family after surgery, he apologized for having to shave Jonas’ head and ruining his awesome hair.
"If the neurosurgeon is worried about our son’s hair, he must not be worried about how well the surgery went," Ellwanger says.
Ho says he talked about Jonas’ hair because parents often are shocked when they see their child without their hair, and even with a planned surgery, patients often hone in on what their hair will look like.
"I can be telling them about a life-threatening procedure, and they ask, ’How much hair are you having to take out?’" he says.
"Hair, it’s a little thing, but it shows you care," Ho says. He always remembers that when kids like Jonas come in, "this is a kid who was normal 24 hours earlier."
Over the next week, Ho and Dr. Jefferson Miley did an angiogram to get a detailed picture of what the AVM looked like. That let them know that they could treat it with embolization and place some glue in the AVM to cut off the bleeding. Then they could go back in and take out the AVM later.
Weeks later, they would be able to reattach his skull with titanium plates.
"It’s a long haul for the parents," Ho says. "We’re painting the picture of what to expect next."
When Jonas went to the pediatric intensive care unit at 6 a.m. Thanksgiving morning, he was a different kid than the one the day before.
"For the degree of injury, for the degree of bleed, he’s doing remarkably well," Ho says.
His parents sat by his side, reading to him, talking to him and playing his favorite music. He was not awake and was using a breathing tube.
Ellwanger kept a Caring Bridge journal to update friends. The first post was written that morning by a friend: "He has lightly squeezed the hand of Christina, Jay, YaYa and Granddad — a very positive and hopeful sign!"
Jonas was a fighter. He tried to rip out IVs and feeding tubes. He sometimes was incoherent; at other times, he clearly was cussing. He didn’t know where he was or what was happening to him.
Those first three days, doctors monitored the pressure inside Jonas’ brain with a monitor they placed there when they removed his skull.
That Saturday, Ellwanger wrote that Jonas was taken off the breathing tube. "Jonas then opened his eyes again, focused on us, and started TALKING to Christina, to his doctor, and to me.
"A few things were very clear and understandable: ‘You’ve got to be (expletive) kidding me, dude’ and ‘What’s the plan?'"
One of the nurses later told them: "Anger is not half bad. He is processing things and that’s good."
The next day, Ellwanger writes: "Make no mistake, most of what he was trying to say we couldn’t understand. But there were very clear communications as well, like ‘PLEASE stop doing that’ and ‘I want a cheeseburger.’"
Sometimes they would play music, and he would speed rap a song, and that would make the neurology team excited.
"When he wakes, 90 percent of that time is spent with him struggling to communicate with us, and with his medical team and his family struggling to do whatever we have to do at that particular moment to help him, to heal him, and to love him. And it is so very, very hard," Ellwanger wrote on Dec. 2.
That was the day Jonas had an angiogram, which determined that the AVM was in a place where it could be removed without damaging the brain.
The Ellwangers took turns sleeping at the hospital and taking care of Jonas’ sisters Berit, who was 10, and Annika, 8.
Ellwanger says that each morning they repeated to Jonas what had happened to him, but it was like Groundhog Day. "We thought he was there, but then we found out weeks later, he didn’t remember any of that," Ellwanger says.
"When he does wake up, he’s confused, and I’m not sure he recognizes me, and I don’t know that he knows where he is. But he does tell me that it hurts. And there is nothing I can do to help him except work with this godsend of a nurse to keep him from laying on his left side and injuring the part of his head where he doesn’t have a skull," Ellwanger wrote on Dec. 3.
On Dec. 9, Ho took Jonas back into surgery and removed the AVM, followed by an angiogram to check that everything was well.
"Once the AVM was out, he dramatically improved," Ellwanger says.
Ellwanger wrote that day: "The best news I can give you, and one that is hard to describe but every parent knows what I'm talking about, is that I see the ’real’ Jonas behind his eyes. ... It feels like Jonas is back."
Ho told the family that day that the AVM "was huge."
"If your pediatric neurosurgeon is laughing after brain surgery, you know things went well," Ellwanger wrote.
By Dec. 11, Jonas was moved out of the intensive care unit and into the rehabilitation unit. They began to see more and more signs of the real Jonas, but it was hard. He still was having trouble talking.
During his daily neurology exam that day, Ho asked Jonas what he was holding in his hand. Jonas was searching for the word, which everyone thought would be "phone." Instead, after a pause, Jonas asked if that was the new iPhone 11 Max.
Yes, he was slowly returning. That day his sisters visited:
Ellwanger wrote: "Berit cried tears of joy as she said she saw the path to getting her big brother back. Annika dropped her jaw when Jonas muttered ’OK, Boomer’ at his mother and got away with it (for now). The kids needed some time to be siblings again — a tall order while Jonas was in the PICU. And for a few brief, perfect moments tonight, we saw it."
By Dec. 13, they were seeing even more progress: "Sure, it took Jonas a few tries to nail down some of our names (mine included). But by the end, he was getting more right than he got wrong," Ellwanger wrote.
Dec. 15 was the first morning Jonas woke up and remembered what had happened to him and where he was. He called it a "bad dream."
In the rehab unit, Jonas — the kid who was a wide receiver on his middle school football team and was headed toward his high school swim team — learned to walk again.
He learned how to speak again, and he learned how to read. That was one of the most frustrating moments for him. Before the AVM and bleed, Jonas was reading on a college level. Now he was having to put together letters in his brain to form words like "ball" and "cap."
"Based on where the brain bleed went, my ability to read was that of a first-grader," he says, yet his reading comprehension was like a kid in college. "Having that different point of view was very hard," he says.
Even as he improved, after he read a passage, he needed a 20-minute break. By Dec. 28, he was able to read a paragraph at a time.
Even today, he still cannot see the lower right quadrant of his vision. "It’s never going to go away," Jonas says, "but I could have been completely blind. I have most of my vision back."
Reading, though, remains very slow.
His family celebrated little things like when Jonas began playing video games again on Dec. 17. "Three weeks ago his love of video games was the bane of our existence; today it was pretty cool," Ellwanger wrote.
Jonas spent major holidays at Dell Children’s: Thanksgiving, Christmas, New Year’s and his birthday. On Thanksgiving, he was fighting for his life. On Christmas, his family gathered around him and opened presents, and the siblings fought over who got to open the next present, which actually felt normal.
For New Year’s they shared foam cups of the worst sparkling wine and rang in the new year hoping that 2020 would be better.
On his 14th birthday, Jan. 5, Jonas received a visit from one of the intensive care unit nurses, who brought him his favorite cup of ramen noodles with 17 nurses’ signatures carved into the foam cup. "Hallmark has nothing on this," Ellwanger wrote. One of Jonas’ doctors from the intensive care unit delivered homemade chocolate chip cookies on her day off.
Friends and family members came streaming into his room, so much so that the security desk started asking, "Are you here for the party?"
The next day was Jonas’ final surgery: He was reunited with the rest of his skull, secured with a titanium plate.
On Jan. 9, Jonas headed home, six weeks after arriving by helicopter. Doctors and nurses lined the hallway to say goodbye.
Jay Ellwanger wrote: "As perfect a scene as it was, it was impossible to imagine six weeks ago. Even if we wanted to, we dared not — things were just too scary and immediate and shocking and uncertain ...
"They saved our son’s life, and although nothing we could ever say or do would be enough, we want to try. And we want to try in a way that can change the lives of countless children in the years to come. So that they, like Jonas, can smile at their friends and say, ’I lived.’"
Jonas got that chance. In February he returned to school, first part time, and then later full time.
He also helped raise money for Dell Children’s through the Mack, Jack & McConaughey fundraiser from former University of Texas football coach Mack Brown, singer Jack Ingram and actor Matthew McConaughey.
When he met the trio, Jonas got to try on Brown’s Rose Bowl ring, earned the night that Jonas was born.
Now, Jonas’ hair has grown back. He has a question mark-shaped scar that he can feel, but other than reading slower and a loss of some vision, he is able to do what he was doing before. He has decided not to do contact sports like football because of the brain injury, but he plans to swim for Anderson High School’s swim team this year.
And this Thanksgiving, the Ellwangers are planning a quiet event.
"We have a lot to be thankful for this Thanksgiving," Ellwanger says.