December 25, 2012Ely Air Lines
By Mike Ely and Linda Street-Ely
Linda: I had a long but important trip ahead of me. My first fuel stop would be Memphis, and I looked forward to lunch with a friend I hadn’t seen in nearly 30 years. Then on to Cincinnati to see some “Grands” (I later learned that I landed right behind singer Alan Jackson…oh, so that’s why there were groupies at the airport).
Myles, now 10, was born with Severe Combined Immune Deficiency, better known as “the boy in the bubble disease.” He has no functioning immune system, a disease so rare it took a year after his first illness at five months before getting a diagnosis. Two previous bone marrow transplants failed, and while preparing for the third try, cancer popped up in the way again. Lymphoma. Second time. But that’s treatable, and only postponed the transplant. Meanwhile, supportive head-shaving parties held by friends and family around the country ended up in a nice YouTube video, “Shaved Heads for Myles,” with “Stand by Me” sung by Indiana University’s a cappella group Straight No Chaser. And we sent thank-you cards and a Superman cape to our hero, the anonymous young man who donated his healthy bone marrow to save my grandson’s life.
Our family takes turns helping during these times by either staying with Myles in the hospital or with his two young siblings at home while my son-in-law is at work. I enjoy both options, but there’s something special about staying with Myles. Between treatment interruptions we do school work, bible study, build Legos and watch movies – lots of movies, like Red Tails, Spiderman, and The Avengers, which we saw over Thanksgiving. I think he picked Red Tails just for me.
I admire my daughter for the medical warrior she is for Myles, and the great mommy she is to all three. Changing doctors for the third transplant was a wise choice; Myles has been discharged from the hospital several months earlier than expected. While the first 100 days post-transplant are critical, he’s doing remarkably well – well enough to be in isolation at home rather than in-patient.
He was well enough even before discharge to get 4-hour passes. The day after Thanksgiving we went to Lunken Municipal Airport on a pass. Little Princess Caroline stayed behind with Mommy, and I took Myles and four-year-old Liam out to the airplane and strapped them in, explaining everything I was going to do so they’d understand what they were experiencing. Since we’d just watched Red Tails we imagined we would shoot down an enemy if we saw one in the sky. We did several touch-and-go’s, staying in the traffic pattern around the airport because Myles can’t really go anywhere yet. We looked for his doctor’s house in the neighborhoods below and saw the Little Miami and Ohio rivers flowing along side the airport. And I saw him smile. Not just from his lips, but from his whole being beamed this happiness, as those big eyes gazed out the window, taking in the great view from aloft.
It thrills my soul to have been with him when he felt well enough to go up; an indescribable gift for which I will always be grateful, and it gave him a unique story to tell when we returned to his hospital room that afternoon. One of the nurses asked, “How was your pass today?” Myles held his composure like a man and said, “Good. I went flying with Nanny.”