I was sitting in my grey cubicle in Tempe, AZ working as an actuarial analyst for Progressive Insurance (2002) when I got the call. My four year old nephew had been in the hospital all week. They were running a gazillion tests on him to try to figure out why he had been ill for weeks with flu like symptoms of low fever, loss of an appetite, and fatigue. I don’t remember who it was that called me or what they even said. All I remember hearing was….non-Hodgkin's Lymphoma. Stage 3. 90% chance of survival.
He was F O U R years old.
My body froze. Breath vanished from my lungs with a pain I had never felt before. My stomach was queasy and my hands sweating and trembling with fear. It was the very last thing I expected to hear. The big ‘C’ wasn’t even on my radar given his young age. They thought he had a virus. They thought he was just on a growth spurt. They thought it was cat scratch fever. But it wasn’t any of those easily treatable, everyday common illnesses that you would expect a four year old to have.
Everything around me became blurry and distant. My stomach continued to turn as I wanted to vomit the poisonous words that just violated my ears, as if I could rid them from my soul.
Austin was the first grandchild in our family. My first nephew. My first pseudo child since I am the youngest of three older brothers. He was my playmate. My first smell of newborn hair. My first taste of being a responsible adult, attempting to care for another. At least I liked to think I could take care of another tiny human at the time while I was a self-involved college graduate with a new hot-shot corporate job. Truth be told, his mom was always with us in case he really needed something.
We would dress up as superheroes and conquer battles together. He would wear his Batman costume. I’d borrow my sister-in-laws gel mask and tie a blanket around my neck as a cape, secured with a ponytail ring. We spent endless hours together...laughing, playing, loving, snuggling while he slept. This couldn't be happening. NO. Run more tests. They have to be wrong.
We were all in shock. Utter devastation. There are no words to express feelings like those.
My family is all in Ohio. I grew up there. I decided to spread my wings and move west when I was mid-twenty. I had been living in Chandler, AZ for almost a year when this crushing news came. And I was scheduled to move to Colorado Springs within a month after this bomb dropped. I was helpless. Worthless. Living all the way across the country with so much on my plate…what could I do to help?
I prayed.
Praying wasn’t a foreign thing for me as I was brought up strong in faith. Catholic, then Methodist when my parents divorced. I joined a non-denominational church on my own when I was in high school. But since I started dating Carl, I questioned a lot of things...including my faith. I had not been to church in years. I had strayed far from my roots of a solid foundation. I asked questions like, “Was Jesus truly the son of God?, Was there something ‘bigger’ out there besides my religious box of beliefs?” It suddenly felt awkward and selfish to pray for Austin. Why would God listen to me now after I had wandered so far away? After I questioned Him, left Him, mocked Him. I didn’t have time to analyze. I knew prayer would work. I prayed. I prayed and prayed and prayed and prayed.
I prayed every time I thought of that sweet child. I prayed for healing. I prayed to take his place since I felt worthless and ashamed that I had walked away from God and now stood here begging for His mercy. But still, I prayed for that miracle. We desperately needed one. Austin started chemo immediately. Three rounds taking their toll on his tiny self. Losing weight a busy four year old boy doesn’t have to lose. Afterwards, gaining an insane amount with swelling from the enormous amount of steroids they pumped into him.
He is a brave, old soul. I remember him telling me he didn’t have them knock him out for spinal taps. He could ‘take’ it. Did I mention he was four? The grief that washes over you as you hear a little person tell you of the depth of their courage when all they should be thinking about is ice cream cones and matchbox cars is chilling. The number of surgeries, needles, pills, meds, mouth sores, aches, pains this child faced are beyond count. Each one peeling a layer of pride from my young and invincible self. Leaving my heart tender and vulnerable. Broken.
It was through these times I realized that grief isn’t reserved for the broken-hearted after a loved one passes on. Grief can hit long before that person leaves. Grief can build up like a thief and steal moments of happiness for days, months and even years while watching someone you love fight a hard battle. Grief steals hours of thoughts. It can dig rabbit holes full of your worst nightmares. Grief is not just a wake of something final...death. It can be the process of living through a season of torture. And I’ve since learned that it can also ream its dirty head in marriages. When it falls apart...publicly or privately...and you carry on more lonely than you ever thought possible. You can grieve what you thought you life would be. We were grieving the childhood we all hoped and prayed he could’ve had. And begged God that someday he may.
Then around Christmas...around 6 months into his fight, came the dreaded news….’we’ll make him comfortable’.
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….for what felt like years. A weight so inconceivably heavy, only someone who has been there would fully understand. The feeling of complete terror and helplessness. The denial that we truly have NO control over the health of our bodies and our time to be called to heaven. It's like being on a train that is headed towards a definitive death and knowing you cannot jump off. Facing an unknown of horrific sadness and a pain that grips your chest so tight you cannot breathe.
After all of the treatments Austin’s percentage of survival had dropped from 90% to a mere 10%. I felt like everything stopped. Everything lost value and priority. Food lost taste. Life had no joy. Even moments of positivity faded smiles. Nothing else mattered. Nothing made sense. Having to work through this mess felt like a sick game of adulthood. I wanted nothing to do with it.
We were not prepared or ready to let him go. Thankfully, the hospital in Cincinnati agreed to do a (then very new) stem cell transplant on him as a last ditch effort.
That March, Austin received MORE chemo. THREE days of FULL BODY radiation. He was beat down to nothing. The sheer fact that this array of back-to-back treatments did not kill him is a miracle in and of itself.
He rested for a few days after all the poison and radiation had pumped into him had knocked him down to nothing, literally. Then the transplant. The stem cells. Our only hope. We were left waiting, for over 6 months, barely grasping breath and holding tightly to hope that the graft would take and we would have more time.
Throughout his battle with chemo and cancer, my employer (Progressive Insurance) had me fly in about once a month to attend meetings with my group of internal associates and connect with my team. This brought me ‘home’ to see Austin, as well. Being on the actuarial team, you are typically expected to take exams to forward your career and education. My boss graciously excused me from the tests and demanding study time that goes into them so I could have more time with my family. What a gift. I often wonder if he really knew the depth of my gratitude when I repeatedly thanked him. Time is a gift. This one was priceless.
So I was able to see Austin on a regular basis. Each time heart and gut wrenching. I would cry on the plane back to CO wishing I could somehow relieve him of the battle he faced and begging for a miracle. Wishing I could be there permanently to support him and my family.
This particular time I was there to visit was after he received the stem cell transplant. I counted. THIRTY-TWO. 32 lines on his IV tree. 32 ‘things’ going in/out of his body. There was a stale, eerie heaviness in the air. Death lurking around the corner. His mom, one of my best friends, sitting numb next to him. Her eyes never quite drying from tears. Her body wrecked with fatigue. She never sat still, her body was always swaying or shaking from fear, exhaustion and stress.
He was just a week into the transplant. I’d never seen him so frail. So thin. So tired. He was excited to see me, then just laid down. His birthday was that week…we opened his gifts that I had to remove from the packaging, wash, disinfect, then rewrap carefully to be sure he didn’t catch a bug. We joked about the gown and mask I had to wear to be in his room. Trying to make light of the seriousness of the situation. I sobbed behind his back as I laid next to him while he rested. Would this be the last time I saw his precious face?
After I left his room, I collapsed in a heaping mess of emotion on the nasty hospital floor. This germaphobe would NEVER be caught doing such a thing, but on this day…none of that mattered. I wanted to die right then and there to avoid any heartache that could be ahead of us. I couldn’t bare the weight of the unknown. It would be 6 months of waiting till we’d know if the transplant grafted. 6 months of eggshells after the last 6 months of chemo and watching him slowly fade.
A nurse came over and helped me up. She said ”he’ll be ok” in a knowing and surprisingly positive tone. I wanted desperately to believe her, but hope was escaping me more each day. All I could think was that her words seemed entirely too easy for these circumstances, thus must have been grossly rehearsed. I wondered how many times they breeded truth. I searched her eyes for the answer, but found nothing.
Back to Colorado I went. Empty. Clinging to hope and clinging to my faith that I had brushed aside the last few years. Everything looked different. I had a new lens to examine my life. What really mattered?
During the times I couldn’t see him in Ohio, I would pray for Austin. Diligently. Every night the same prayer:
“Lord, please, I beg of you, please heal Austin. Please let him know that I am with him, even tho I am so very far away. Please let him hear my prayers. Please let him know that even tho I cannot be there, I am ALWAYS with him in spirit. Please let him know how much I love him. Lord, please, please, please….heal Austin. In Jesus mighty, powerful and awesome name, Amen.”
Austin spent time at the Ronald McDonald House for months after the stem cell transplant. He didn't get to go home for what felt like forever. But when he did, I flew back to Ohio to see him again. It was close to Christmas and about 15 months after his original diagnosis. The child I used to put a gel mask on and a blanket cape to run around the house playing Batman with took me into his room to play cars.
His frail, but healing body looked up at me, smiling in a way that beamed relief and comfort after being away from home for the better part of the last year. Poked, prodded and operated on. Finally, some familiarity.
I fought back tears of joy as I played. Tears of humility and gratitude. Exhausted from my travels, early morning commutes to the office, and growing bag of mixed emotions. Dare I be cautiously optimistic that the worst was behind us? I climbed up on his bed while he played on the floor.
I felt this ‘nudge’ to ask him a question. Surely, I wouldn't ask a 5 year old such he a deep question. Surely, I wouldn't be so foolish to think he would answer it. But the nudge was there and it wouldn't stand down. My voice must present the question the Spirit was leading me to vocalize.
“Austin, do you ever hear me at night?”
Surely, he would look at me puzzled and confused….I live halfway across the country and his bedtime is hour is before mine (time zones).
To my surprise, his words woke me to a new state of being. They rocked me to my inner core. He would never know the impact such simple words would have on me and how they would change the course of my life.
As simple as the sun rises, he set the cars down he was playing with and said…”I hear you every night, Aunt Lou. You pray for me. You ask God to heal me and….he is!”
Back to cars and motor-mouth noises.
Every hair on my body and head stand straight on end. Tears streaming down my cheeks.
What just happened? Did I just witness a miracle? Did I just hear a sure-proof testimony that God exists and we are all connected through his love and grace? How would he know I prayed for him unless God really answered my prayers and allowed him to hear me?! Who would believe me? Who would think I was crazy if I told them what just happened? Why had I drifted so far from the one God I knew was true, and just, and holy? Why would I wait another day to reinstate my faith? My mind raced with questions and my soul bowed down with reverence. God just gave me a sign. A once in a lifetime, true sign. Proof. No one would ever know besides me and Austin, him being so young...he doesn't even remember this conversation, but it changed the course of my life. All the times I had questioned my faith...God just shut me down and woke me up!
B R E A T H E
I certainly did not deserve this sign. Ashamed of my actions and drifting beliefs, I should’ve never received such a gift. But that’s not how God works. He loves every last one of us...always. He would never give up...not until I was safely back in his arms. To this day, I shake my head when I think of it...I was such a fool. We all have our own paths and our walks in faith. But in this moment, I was deeply humbled. Who was I? I didn’t deserve this grace. This mercy. This redemption. But God gives it all, freely. We are all loved equally.
Everything from that moment on was categorized as before and after the ‘carversation’. My 4-year live in relationship ended. I went back to the seeds of my faith and planted my feet firmly. The following Easter Sunday I was baptized.
Austin turns twenty-one next month. He pulled through. Even after dropping down from their calculated 90% chance of survival to 10%. He is a walking, talking miracle. He is proof that one can ALWAYS hope. If you’re joining me down this emotional replay, you may have tears streaming down your cheeks at this point, too. With all the sadness in this world, I feel immeasurable gratitude to have Austin’s story be one of healing, and hope. I know far too many people who have lost loved ones to cancer, including myself.
Life was never the same after Austin’s healing.
His illness, as dark and twisted as those days were, bred the change in me that would awaken my soul. It would give me an eternal perspective I lacked. It would root gratitude deep, deep into places in me that were naive and oblivious before. When I look back, this moment is when I feel like my life truly began. Before this time in my family’s lives, life was just a succession of status quo. But this experience changed us all in ways personal to each of us. For me, this was the beginning of the quest for a greater understanding. It was a switch I could never, again, turn off.
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