The Liberty Gazette
June 6, 2023
Ely Air Lines
By Mike Ely and Linda Street-Ely
Linda: Today, our grandson Myles turns 21. We call it a miracle. Born with a rare form of Severe Combined Immune Deficiency, a/k/a the “boy in the bubble disease,” he had no functioning immune system. By the time he was 10, two bone marrow transplants had failed, and while preparing for the third, lymphoma popped up for the second time, postponing the transplant.
We gathered photos of head-shaving parties held by friends and family around the world and put them together for an inspiring YouTube video, “Shaved Heads for Myles,” with Indiana University’s a cappella group, Straight No Chaser, singing “Stand by Me.”
Our family took turns staying with Myles in the hospital or with his younger siblings at home. There was something special about staying with Myles. He loves to tease, especially doctors and hospital staff. It was one way he combatted exhaustion, pain, boredom, and sorrow over friends who didn’t make it, as he fought on.
Between treatments, we did schoolwork, Bible study, built Legos, and watched movies. Over Thanksgiving, he chose Spider-Man, The Avengers, and just for me, Red Tails.
The next day, his doctor gave him a four-hour pass, so we went to the local airport. I took him out to our airplane and buckled him in for a flight. We did several touch-and-goes, staying in the traffic pattern because he couldn’t go anywhere else yet. We looked for his doctor’s house in the neighborhoods below. With Red Tails fresh on our minds, we scanned the sky for enemy planes. Turning toward our imaginary prey, we pretended to press a trigger on the yoke, and rolled our R’s as our tongues vibrated the roofs of our mouths: “BRRRRRAAPTT!” And I saw him smile. Not just from his lips, but from his whole being beamed happiness, as he gazed out the window taking in the view from aloft. It thrilled my soul, and I will always be grateful. Plus, it gave him a unique story to tell back at the hospital.
Preparing his medications, his nurse asked over her shoulder, “How was your pass today? What did you do?”
He shrugged. “Nothing.”
I glared at him in disbelief. “Excuse me?”
His lips barely curled as he tried to restrain a smirk. He held his composure as much to taunt me as to harass the nurse, who turned suddenly from her work. “Sounds like you have something to tell!”
Myles replied offhandedly, like a cool dude, “It was good.” Then the grin broke through and he shrugged to maintain the cool: “I went flying with Nanny.”
Myles was discharged several months earlier than expected. While the first 100 days post-transplant are critical, he did remarkably well, allowing him to be in isolation at home rather than the hospital.
We sent thank-you cards and a Superman cape through the National Marrow Donor Program to the anonymous young man in Germany who donated his healthy bone marrow. This hero’s gift saved our grandson’s life.
Today, Myles is a junior in college, a champion weightlifter, a gifted artist, a motivational speaker, and is writing a book. And now he’s 21. A miracle.
ElyAirLines.blogspot.com
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