Last Thanksgiving, Landen Walker and his family didn’t realize they had a harrowing year ahead of them, but this year they are feeling thankful and blessed. The 15-year-old started having nosebleeds last fall, which his family thought were seasonal allergies.
“He had a checkup in December and the doctor said it looked like nasal polyps,” recalled Robyn Raines, mother to Landen and his sister, Kyndell Walker, 12, for the past 10 years. “We went to an ENT doctor and he was put on nasal and oral steroids. Then they wanted him to have a c-scan because he might have to have the polyps removed.
“He couldn’t breathe out of his left nostril or hear out of his left ear, and his cheekbone was broken.”
The result of the c-scan was not good news. The scan revealed a mass that had consumed the left side of his nasal cavity. A test revealed the mass was not cancerous.
“I couldn’t feel it and I could eat normally,” Landen recalled.
He was referred to a specialist at the University of Virginia Medical Center with a January appointment.
Before the appointment, however, he spent the night with his grandmother, and she called Raines to say he was crying and couldn’t breathe. He was taken to the local emergency room and transported by ambulance to UVa.
In January of this year he was diagnosed with Juvenile Nasopharyngeal Angiofibroma, a highly aggressive tumor primarily found in adolescent males. Only 50 cases per year are diagnosed in the United States.
He began homebound education at that time, which continues today.
In February, the surgeries began. His first was a six-hour procedure known as an embolization, which cut off the blood supply to the benign vascular tumor. That was followed by a 15-hour surgery to remove the grapefruit-sized tumor by way of a surgical opening into the skull.
Walker casually shows off the scar across his head as the words “juvenile nasopharyngeal angiofibroma” easily roll off his sister’s tongue beside him. He reacts by collapsing onto the couch.
The two are close and wrestle each other as Raines describes the medical procedures.
“I don’t know how I’ve kept my sense of humor,” Walker said.
Post-surgical scans in March were clear of signs of the tumor, and it looked like everything was going well.
Then he had a few emergency room visits throughout the summer because of headaches and fainting, according to Raines. They returned to UVa in September for a six-month follow-up and were dismayed to find the tumor had returned in his brain and was connected to his optic nerve near the carotid artery.
“It was on the part of the brain that controls his nerves and was the size of an orange,” Raines explained. “Because of where the tumor was, UVa sent us to the University of Pittsburgh Medical Center.”
They were told the Pittsburg facility was No. 1 in the nation for the kind of surgery he needed.
“Kids from around the world go there,” Walker said.
He had another embolization Sept. 10, followed by surgery the next day. He left the hospital not long after that.
This time the doctors cut under his upper lip and went under the cheek muscle and through his nose to his brain to successfully remove the tumor.
“I believe in prayer,” Raines said. “Going into the surgery, they said more than likely there would be eye damage and to be prepared for a spinal leak. The roof of his mouth and left side of his face might never have any feeling again.
“But everything was good. He has 20/20 vision, and you couldn’t tell he had a tumor on his optic nerve.”
Walker didn’t even have to use planned radiation pills because the surgeons got all of the tumor.
A few bumps
Walker’s recovery has not been without some bumps, however.
“A few weeks ago, his whole face was swollen because of an infection and he had to do a nasal rinse with an antibiotic three times a day,” Raines said. “He can’t be super active or do anything vigorous. He looks good on the outside, but he is still healing on the inside.”
Two weeks ago he had to have a cleaning done at UVa where his follow-ups are. He was told the infection had slowed and he is healing fine.
Walker said the most painful part of all of this was after the first surgery.
“I tried to get up and was in agony from lying down for eight hours for the embolization and then for the 15-hour surgery,” Walker said.
Mostly he is confident and happy, though.
“I am so used to being in the hospital that I am not afraid anymore. I’ve had so many IVs I can’t remember them,” he said.
His sense of humor has remained intact through all of this. Raines recalled his coming out of the recovery room after the second surgery singing the song “Hey, Look Ma, I Made It” by Panic! at the Disco.
He returns to UVa on Dec. 11 for scans, which Raines said are “scary,” but Walker said are “not really scary.”
Throughout the medical ordeal of the past year, the family has received an abundance of community support.
Facebook fundraisers have raised money for his medical expenses and both Galileo Magnet and George Washington high schools held Powderpuff Games to raise money.
A prayer blanket with knots tied in ribbons around the edges to represent prayers and good wishes has been with Walker from the beginning. It stays in his bag in case he has to go back to the hospital suddenly.
“Grandma Tavie’s [Tavie Hazelwood] friend made me a prayer blanket before my first surgery, and the doctors and visitors tied knots in it for prayers,” Walker said. “Then I decided to make them because when Grandma Tavie gave it to me, it was special, and I wanted to pay it forward for people with depression and ‘upsetedness.’”
On his Facebook page, Walker said his mother covered him in his prayer blanket and that way he knew he was covered in love and prayers at all times.
So far Walker’s family has made 200 blankets, which involved buying out all of a certain kind of fleece blanket from the Walmarts in Danville, Eden, Reidsville, Lynchburg and Martinsville.
They put five ribbons on each side.
“We shared it on our Facebook prayer page, and the story made it on TV shows throughout the U.S,” Raines said.
In response, Angels of Destiny, a nonprofit ministry in Texas, heard about the project and send little fabric angels to accompany the prayer blankets.
“We set up a Facebook donation page for the blankets, and people wanted to buy them, but we didn’t want to charge for them,” Raines said. “But you can donate to buy the blankets.”
Taking time to heal
Walker’s life is somewhat limited now until his healing is complete.
A teacher comes to his home two hours per day for his schooling, and he likes to go out in the backyard and use his bow and arrow. He hopes to go back to school after Christmas.
Sometimes he goes shopping with his mom, although that has its limitations, he explains.
“She’ll just need one item and she’ll be around the whole place,” he said. “But I need to be with her because she has bad separation [anxiety].”
Sometimes he sees his friends at school, and he spends time with his sister.
“We have bad separation too,” he said. “We always defend each other, and if she gets bullied, I’ll be there to protect her.”
He likes to go ax throwing and looks forward to returning to the Grizzly Hatchet House downtown.
“I enjoyed that when I went, and I love to dig in sand and dirt — anything,” he said.
As he looked toward Thanksgiving, Walker said, “I’m happy to be here in life and not to be sick. I’m feeling fit as a fiddle.”
His sister said she is thankful for “me and my brother.”
Raines said she is thankful for everything.
“I’m thankful my baby is good, is here, is healthy and that all the things they said might happen didn’t,” she said. “It’s unbelievable how many reached out and helped with so many things.
“Strangers showed up with gift cards for travel expenses and to help with Kyndall and my mother.”
Walker also is grateful and excited that his wish to The Make-A-Wish Foundation has been granted. The organization grants wishes for children with rare, not just fatal, conditions like Walker has.
In the summer of 2020, the family will travel to Ireland.
Walker, who said he is Irish, looks forward to seeing the Cliffs of Moher and riding horses.
“I’m thankful God answered prayers,” Raines said.
Elzey is a freelance writer for the Register & Bee. She can be reached at email@example.com or (434) 791-7991.