For many of us, the teen years are remembered with a tinge, the awkward age when incumbent childhood and impending adult life coalesce messily. It’s a time our self-confidence rolls us back on our heels even as our hearts yearn to plunge ahead into new adventures and freedoms.
In a word, it’s a transition to end all transitions, steps that once completed are never to be retraced.
Noah Evans’ journey to this threshold was everything others went through, times ten. Along the way, the youngster endured what is every parent’s worst nightmare, carried it with grace and dignity, reserving his energy in his dwindling lucid moments to tell his family he loved them. At the end, transitioning not just from one chapter to another, but one life to another, he showed how hope and strength survive the grave.
He is, in his mother’s gentle words, “Forever thirteen.”
“He was the kind of kid who walked into a room, and it lit up because of his presence,” says Lori Evans, Noah’s mom. “He had this amazing ability to see people. He would find the kid that didn’t have a friend, just innately knowing what person looked lonely or who needed a smile or some encouragement. He would find those people and befriend them.”
“I look back now over his journey, over his life, and I just stand in awe of his character and the way that he was so joyful. He made things brighter.”
Noah was the middle of the loud, loving chaos of three boys born to Lori and her husband Tom, a physical therapist. The itinerant jokester, Noah was a natural for the stage and although he sampled other activities in his short life, it was in performance that the quick-witted youth shined brightest.
“He was a soccer player, but he also loved the arts,” Lori says. “He loved improv. He was a great artist, drawing and creating. He was also in musical theater.”
“He loved making people laugh and being silly. I remember one visit to his oncologist at Vanderbilt, he asked him, ‘Noah, do you have any weakness?’ Noah goes, ‘Cute puppies.’”
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It started with a headache.
Lori hears herself saying it, but to this day scarcely believes that something so innocuous could irrevocably alter the course of five lives. Kids got headaches and scrapes and bruises all the time, especially boys with brothers. Dish out a couple of ibuprofens, buff out the dents and hose them off, that’s all the maintenance her sons generally required.
“Someone asked me then, ‘Are you concerned?’” Lori says. “I said, ‘I am not. If it was anything major, I think Noah would be having more problems. He wouldn’t be able to make it through a full day of school, soccer practice and theater rehearsal if it was serious.’”
But the persistence and intensification of the pain led to doctors and eventually to a neurologist at Vanderbilt University Children’s Hospital in Nashville. It was an evening in September 2019 when the door cracked to the imaging room where Noah was having his MRI, and for the first time Lori’s skin prickled.
“The nurse said, ‘Are you by yourself?’ I said, ‘I am.’ She said, ‘I need you to come with me,’” Lori remembers. “It was like a movie. We walked down this long hallway and the lights are dim because nobody’s there. She finds this empty room and sits me down and says, ‘I’m so sorry to tell you this, but we see a brain tumor in Noah and that’s what’s causing his symptoms.’”
Noah was diagnosed with a diffuse midline glioma of the right thalamus with an H3 K27M mutation. Translation: Cancer, and even among brain tumors, a species that stood out as particularly vicious and aggressive. There will be a honeymoon phase, doctors told them, four weeks after radiation, when you’ll swear we’re wrong. But we’re not and you’ll see things degenerate quickly.
Six months, they said, at most twelve cruel, decimating months. That’s all he has.
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True to form, Noah didn’t look or act like a terminal patient for the first few months of treatment. He played sports, his most loved being pickleball, performed in musical theater, and generally tweaked the nose of the monster foaming in his head with each passing day.
“For the first seven months I did not even allow myself to go in any other direction than, ‘God is going to heal him on earth. This is just a part of Noah’s story,’” Lori says. “I woke up every day going on my knees before the Lord saying, ‘God, I know that You can. I know You’re able. I know this is not too hard for You to do and I’m asking You to do it.’”
“Meanwhile, all the things the doctor had told us were going to happen were not happening. I took that as the Lord is doing this, He is giving us our miracle on earth.”
In April 2020 Noah was scheduled for another scan where his family was convinced the miracle would be confirmed, that against all odds, against all medical science, their pleas for divine intervention would be vindicated.
Retelling what actually happened, the words still slide in dry shards from his mother’s throat.
“He had his scan,” she says. “That showed progression of the disease. The one tumor had spread into two new locations, so he had three tumors that were growing.”
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As the year wore on – and as one by one, the doctors’ forecasts proved true – Lori and Tom had to change their prayers from shaking, fervent pleading to the choking acceptance of a Providential plan they couldn’t fathom.
“Every morning, my husband and I had got up before Noah’s treatment and hit our knees together and we would pray,” Lori says. “We had these declarations that we would pray like, ‘God, we believe this medicine will be only used for good and not harm.’ We were just praying and declaring all these things every day over Noah and then all of a sudden, it was like, that’s great, but that doesn’t guarantee you’re going to get what you want.”
“I remember sitting on my back porch reading Luke and the story of Jesus in the Garden of Gethsemane. At that point, ‘Father, please take this cup of suffering from me. If there’s any possibility to do it another way, please let it be. But not my will be done, but Yours,’ that was the moment that I said that has to be my new prayer. I started unpacking and rewriting some of my faith and theology behind suffering. And every time I was like, ‘God, why would you let Noah be born only to die?’ He was like, ‘I allowed my Son to be born only to die. But there was a purpose in that.’”
January 5, 2021, Noah came home from the hospital to family and friends constantly at his bedside. Eight days later, he said to his mother, “I love you guys,” and that night, an assembled gathering holding prayer vigil witnessed a shooting star fly over the Evans’ house. A little after seven a.m. the next morning, January 14, Noah Evans at last shook off the wrappings of cancer and, bathed in the sunlight, went back home for good.
In the months leading up to Noah’s passing, Lori had started to get signs that she was to do something with her pain to help other families in the same situation. She became aware that his type of brain tumor was so new there was nothing in the way of treatment just four years prior. Approaching her fortieth birthday, she posted on social media for followers and friends to donate to the cause. She raised $22,000 and it didn’t take much to understand why.
“I was like, ‘Okay, Lord, we are going to use this money to help other families,’” she says. “Immediately, I started getting connected to them. And even though Noah was still in his battle, I’m meeting these other families who are also in their battles and needing help.”
A month after Noah died, Lori sent in the paperwork chartering her nonprofit, the NoahBRAVE Foundation. By April she’d applied for 501(c)(3) status, which was granted in October. Since then, donations have come in, fundraising events have been held, families have been loved on and prayed over, whether they ever meet or not.
Running the foundation full time, every day brings Lori a chance to retell and relive the namesake’s incredible life. Doing so sustains her, reminding her to emulate Noah’s courage, challenging her to love as deeply. It’s credo and crux all rolled into one, the purpose of the organization and the guiding light for the family behind it.
“The Lord knows I do well when I get to tell Noah’s story,” she says. “If you ask anybody who has a child pass, ‘What’s your biggest fear?’ It’s that they’re not remembered. Getting to share Noah and getting to share his story is a huge part of my healing.”
“As for the foundation, I just focus on how I can be there for a family from Day One of diagnosis through whenever your child is healed, and beyond. It’s become this passion I feel to live like Noah. Like, I see you, I love you, I care about you, I want you to know that you’re known in your suffering and, if your child passes, in your grief. You’re not going to be left alone on this journey. I’m going to walk alongside of you however long this thing is.”
NoahBRAVE Foundation
Franklin, Tennessee
info@noahbrave.org
noahbrave.org
