Valerie started writing this sometime in August 2021, and finished it the night Eli graduated.
I wish the memories weren’t so vivid. But here we are, with clear names, dates, and events all trapped in my head.
It was Halloween (2018), not when it started, but when the first death sentence came. My little brother had been in the hospital all week. I had my suspicions, I was praying they were wrong, hoping against hope that of the few times in my life I was right, this wouldn’t be one of them.
As the second oldest of nine children, and the oldest one living at home, I was tasked with keeping an eye on the majority of my younger siblings while both my parents were in the hospital taking care of my, then, ten-year-old brother, Eli. I, by some miracle, hadn’t been scheduled to work until that weekend, so babysitting my siblings for a couple of days longer than the expected hour or so long doctor visit on Monday was less of an inconvenience than it could have been. We also had neighbors come by, bringing treats and dinner. Word gets around quick when your neighborhood is as tight-knit as ours.
The day before (Tuesday), Eli had gone into surgery, They performed a biopsy on one of the swollen lymph nodes in his leg (swelling that had put him in the hospital in the first place). My mom had called me on Halloween (Wednesday) morning, informing me that there was going to be trick or treating at Primary Children’s (the hospital Eli was staying at) and that she was going to come home and take us kids.
I don’t remember much about when she came home. I remember us kids getting into our costumes, I remember our family sitting in a circle in our house near the entryway, and our parents saying something, I can’t remember the exact words used, but “cancer” was one of them. My little brother had cancer.
That was it. My suspicions were right. I was right. Oh, how I wish I weren’t.
I didn’t cry. I felt like it, but I didn’t. We still needed to go to the hospital. When you first hear “cancer” you don’t think “curable,” you think “death.” What else are you supposed to think? You hear of more people dying of cancer than surviving it. And what I’ve learned from this journey, cancer comes back. Over and over again, even when you think it’s gone for good, it comes back.
I tried though. I tried to hope.
Elijah Thomas Augustine was born on May 13th, 2008. The sweet little boy was my mom’s first redhead child. I always felt like he was pretty mature for his age, at least, when I was babysitting he was the last child I had to worry would get into any sort of trouble. He wasn’t a troublemaker, and he didn’t pick fights with his siblings.
As he grew up, his personality flourished. He became sarcastic, blunt, curious, funny, and, overall, a joy to be around.
When he was first diagnosed, after giving myself time to think it through, I knew that if anyone in our family could handle cancer, it was him. Now that’s not to say that he handled it with perfect grace and flawless understanding the entire time, far from it. Cancer can get the best of anyone. The weekly, sometimes daily, hospital visits, the sickness from chemo and radiation, the “no evidence of disease!” shortly followed by “it’s back” is enough to bring anyone to their knees in exhaustion and hopelessness. It did that to me just watching, I can only imagine what he had to go through. But he took it. He was fed poison, and even when he just couldn’t take anymore, he kept going. He pushed, and whenever he had the strength to manage, he looked everyone he loved in the eye and smiled, “It’s going to be okay.”
I remember when I started counting lasts.
It was the last Sunday in October 2018 (the last day before, unbeknownst to us, the chaos of the coming week began). Eli had woken up that morning with a mysteriously swollen leg. He hadn’t hurt it in any way, and he didn’t feel any pain. The only clue we had was an assumption that it had something to do with the bump he had found on the same leg a month prior. The doctor had said the lump was a calcified lymph node. We later learned that wasn’t the case.
Since Eli’s leg wasn’t causing him any discomfort, and since we had church and plans with family later, mom decided to take Eli to the doctor the following morning and continue the day as planned.
That night, when we were at our aunt and uncle’s house, Eli challenged me to a game of Battleship. I distinctly remember as I was playing with him, taking the time to look at him and look at his swollen leg. The thought immediately entered my head “What if this is your last normal day with him?” I quickly tried to rationalize, “Valerie, you’re being dramatic, paranoid even. He’s going to be fine.” I’ve since learned that the worst-case scenario is a lot more likely than one might think.
The next years of fighting felt like playing Battleship. A few hits, a lot of misses, and frustration the entire time. Why couldn’t it be easier? Why did “treatable” have to turn into what felt like a lost battle?
Tears are an interesting thing. My most distinct memory of crying came before Eli was diagnosed. It was October 1st, 2018. My grandpa on my dad’s side had Alzheimer’s and I knew the night before, he wasn’t doing too well. I woke up that October morning to my mom’s call, he had passed away a few hours earlier. He was staying in a care facility for veterans and there was going to be a procession where his body was wheeled from his room to the vehicle ready to take him to the morgue.
So my family, that early October morning, drove the 20-30 minutes to go to this procession. When we got there my grandpa’s body was covered in a sheet, his head left exposed. I tried not to look, tears were already threatening to spill. As his body was wheeled out, residents lined the hallways, solemn looks on their faces and hands over their hearts. It was a stark contrast to the last time I had been there, they had been playing games with each other and watching TV. What a terrible reminder of death this must have been for them.
I trailed back and walked with my dad, who I knew was probably hurting far more than he let on as his father’s body was being taken away. I remember looking over at him, checking in to see if he was doing okay. I saw a single tear make its way down my dad’s face. Whatever thin sheet of ice I had holding back my tears, immediately shattered and I broke. I had never seen him cry before. Later, my dad thanked me for my tears, because it made it easier for him to be vulnerable as well.
Little did I know how many tears would be shed beyond that point. Little did I know that the sight of a casket would become all too familiar Oh, how I wish I didn’t have to experience the very adult reality of death when I had only just become an adult the month before. But it prepared me, I suppose, in a very painful way for the trial to come.
Years of fighting. Years of spending every waking moment thinking and worrying about the boy who tried. He tried to live life as normally as possible whenever he could. Even towards the end, if he could, he would walk to the bathroom or up the stairs. When offered help he simply shook his head and continued his efforts remaining silent or stating that he “needed the exercise.”
Years of changing the question of “how are you doing?” to “are you doing alright?” because “how are you doing?” wasn’t even a question anymore. We knew how he was doing, the only thing left to do was check-in and make sure that “alright” was the answer that stayed.
Years of crying, hoping, losing said hope, and starting the cycle all over again.
Years of exhaustion.
Years of pain.
Despite the pain and constant heartache, we still had angels. Our neighbors, friends, family, even strangers all made the pain worth it. Meal after meal was brought, donation after donation, service after service, some anonymous, some not. Everything appreciated beyond words.
Kindness came from every direction. Simple acts brought so much ease to our burdens. Angels. All of them. Because of everyone who wanted to help, there was never a point when our family was without support. People brought miracles.
In addition to the miracles brought by those around us, there were many miracles with Eli’s illness that came about. From the moment he was diagnosed and every death sentence that came after, Eli exceeded expectations. He lived far beyond the doctors’ expectations, as well as ours. I can’t help but be grateful for all the time I’ve had with him that, by all other accounts, I shouldn’t have had.
What Does Death Look Like?
After watching my grandpa die, the slow then sudden decline, I thought I had a pretty good idea of what death looked like. It looked vacant and tired. It was forgetful. Death didn’t cut, but it bled and burned. But after finding out Eli was terminal, the second death sentence, I began to doubt.
Two months to a year. That’s what they told us. But he didn’t act sick enough for that time slot to make sense. There was no way, he seemed completely healthy…well, aside from the small mass that had appeared on his arm a week or so before we got the news. He couldn’t be dying, he had just finished chemo only a month ago, there was no evidence of disease. I knew what death looked like, and my brother wasn’t it. Denial. I seemed to be in denial a lot.
Two months came and went. Eli was fine.
Six months came and went. He was fine.
A year came and…the rapid decline.
I was away at college and I remember praying that he would live until I moved back. He did. I moved back home and he was in a lot of pain, he was limping and he didn’t have much of an appetite, but other than that he acted just like himself. Two weeks later, Eli goes in for his regular hospital visit and my mom insists that he get an MRI because he had been having difficulty breathing.
He had a collapsed lung.
The third death sentence came.
Death isn’t supposed to look like a child. Older siblings aren’t supposed to outlive their younger ones. Parents aren’t supposed to outlive their children. Grandparents aren’t supposed to outlive their grandchild. Doctors want to heal, fix, not watch their efforts fail.
This wasn’t supposed to happen. No one wants to watch a child die.
He had, by nothing short of a miracle, made it past the year mark and, this time around, the doctors gave him two weeks to two months. He was so weak, we couldn’t do the chemo we had planned on at that time out of fear of it shortening his life rather than extending it.
The final death sentence came at the beginning of November. After three years of battle we knew it was time to say goodbye to him, but knowing never makes it easier.
Death looked tired. Death turned the normally smiling and occasionally sarcastic face to one etched with pain and discomfort. Death was pale. Death was skeletal. Death was strength trapped in a weak body. Death reminded me that death wasn’t all there was. Death looked mean, Death looked kind. Death was pain and Death was comfort. Death was perspective. Death highlighted life. Death felt like a cut every time the future was mentioned, every time the boy couldn’t eat, and every time a tear was shed. Death found its way onto the face of a thirteen-year-old boy and suddenly, Death didn’t look like a child anymore.
He was ready. I never would be.
“Can I die tonight?”
Life before cancer was painful at times, but bright. Full of more hope than hurt. Life during cancer is red. It cuts cleanly and you don’t notice until you see the blood spilling in the aftermath. Reminders of death come in flashes. Almost like memories that haven’t happened yet. Life after cancer is blue. Sad, but calm. There are tears and heartaches, but the pain has turned into a dull ache and if you try hard enough, you can forget it’s there.
But the memories never leave. The reminders of what was lost are always going to be there, like little nuggets of gold. Simple treasures that bring aching happiness. Joy and sadness don’t seem so different anymore. You can’t have one without the other. The red is still there, but now it’s in the form of a ribbon tying you together. Sadness comes with the territory of happiness. Without the despair as a reminder of what pain feels like, you wouldn’t be able to experience the full extent of complete joy and elation.
You’re never ready for someone you love to die, but when seeing them alive and in pain hurts more than their death and final peace, you know it’s time to put down the sword and let Death come. Sometimes, in the words of Eli, “This is victory.”