This is the beginning of my story.
If you’re here because you’re walking through something similar, I see you.
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THUD! THUD! THUD! bbbeeeeeeeeepppppp. “Time of death, 10:45pm”.
Silence began to fill the room as I lay over the side of the bed, arms wrapped around a lifeless body, ear pressed up against a stone-cold chest.
In an instant, the soft, warm familiar touch I knew quickly became hard, cold and foreign. I immediately pushed myself up, knowing the body that lay in the hospital bed was no longer one I knew.
The blood rushed to my head as I raised my face to meet the group of hospital staff standing around the bed. Every single one of them had this sad and broken look on their face as they waited for me to do something.
I just stood there, frozen right where I stood. Not a tear to shed, not a word to say, just numbness filling my entire body.
Then one of the women spoke, her words deafening as I tried to grasp what was happening.
“Tayler, take all the time you need. When you’re ready, we will be waiting for you in the hallway.”
I didn’t move; my body paralyzed as my brain tried to process the events that just took place. I turned my head slightly to the right and saw my dad crying, holding onto the lifeless hand that hung off the side of the bed.
I looked back at the body one more time, a blank expression on my face.
Then the words rushed out of my mouth as if someone else was speaking for me, “Wes is gone, my husband is dead.”
9 years together, endless memories created, a life full of promise and adventure was over in one final breath.
I took a deep breath, started gathering my belongings and headed for the doors. I stopped, turned around and took one final look back at Wes, “I love you, babe, I’ll see you later”. That had become a habit, muttering those words every day for the past 3 months as I left Wes’s room at the end of each of our visits. Except this time was the last time I would say those words to him. I turned back around and paused as the double doors to his room clicked open. I knew walking through those hospital room doors meant leaving behind the life I knew and entering into a life I didn’t want to accept.
Wes had this brightness to him, this light that was hard to miss. His presence would fill a room in an instant, but not in a notice-me kind of way. He wasn’t trying, he just was. His demeanour was soft and gentle, balanced with a tall, broad stature. Wes was smart, caring, honest, loving, full of excitement and life. He worked hard and was always ready to lend a hand when someone needed him. He was a simple man; it didn’t take much to make him happy. He adored his family, especially our daughter Aubrey, oh how he loved that little girl. He did have some questionable taste in sports teams. The Detroit Red Wings were a close second to the love he had for Aubrey, that man loved his Red Wings… He was almost perfect. Wes was such an incredible man, with such a big heart and beautiful soul. It was hard not to like him once you met him.
Our life together began like any typical relationship would. Wes saw me, he fell in love and the rest was history. Okay, there were a few things that happened in between, but the most important facts are those ones. Wes and I dated for 5 years before we got married, then we got pregnant with our daughter in the late fall of 2019. Everything seemed perfect, we had the house, the marriage and the baby on the way. We were young, happy and madly in love. We had our whole lives ahead of us, or so we thought.
Wes faced a long and difficult journey throughout the two years of his illness. He was in and out of hospital, spending weeks away from his family. He had countless doctors and specialist appointments, MRIs, X-rays, ultrasounds, biopsies, medications, transfusions, chemotherapy and the list goes on. He was a real-life medical dummy, poked and pried as doctor after doctor, specialist after specialist tried to find an answer as to why a healthy 29-year-old man became so sick so quickly.
At the beginning, we were so hopeful for an answer, a diagnosis, something that would explain why Wes was so sick. Every time we met with a new medical team member, we would walk into their office so optimistic, but we would leave feeling discouraged and let down. All we wanted were answers, but all we were left with were more and more questions. I felt so lost, so helpless as I watched my husband struggle day after day with so many life-altering symptoms.
It all seemed to happen so quickly, from the first symptom Wes started experiencing to the day he died. One thing after another popped up like a music teacher snapping their finger, keeping beat to a quick-paced song. 1, 2, 3, 4, snap, snap, snap, snap. Fevers, night sweats, loss of appetite. Weight loss, full body rash, nosebleeds. Excessive coughing, slurred speech, memory loss. Personality changes, anxiety, depression, seizures, enlarged spleen, inflamed liver. Muscle weakness, multi-organ failure, cardiac arrest. Life support.
How could the doctors get it so wrong? How could they not find a diagnosis?
HLH (Hemophagocytic Lymphohistiocytosis).
A rare immune disease that affects roughly 1 in 50,000 people per year, the majority of those are children under three years of age. HLH is a complex and multifaceted disease, making an accurate diagnosis incredibly challenging to achieve. HLH is handed to innocent victims, forced to fight the toughest battle they will ever have to face. With a 40% mortality rate, a stem cell transplant stands as the only viable option for potential remission. All come out swinging, ready to take on their challenger. Some make it to the other side with a victory win, but are left with a lifetime of challenges, while others give it their all but still come up short. HLH is a disease no one should ever have to face, but so many do.
Wes’s illness caused so many challenges for both of us. We were separated by the monster in our lives, living parallel to one another, unable to see or hear each other. I watched helplessly as the man I was so in love with was slowly fading away into the distance. Everything we had built, everything I knew was crumbling right in front of me. I felt as if I were shackled by thick chains, unable to do anything. I was angry, frustrated, resentful, desperate. I wanted things to go back to the way they were. I wanted my husband back, I wanted Aubrey’s dad back, I wanted Wes back.
As the months ticked by, the reality of Wes’s condition became more obvious. I knew the odds weren’t in his favour, but I had to keep positive for him. I’d push those thoughts as far back as I could until they would disappear. If I didn’t think about them, then it wasn’t real. That little game I’d play with my mind worked for a while. The ping-pong match we started was a bit annoying, but I’m known to be a pretty good opponent of the game, so I was able to keep up. Back and forth we went, keeping a good rally going. But eventually one of us would have to tap out, and unfortunately that one was me.
February 17, 2022. 7am, bright and early, time to start the day. I rolled over to say good morning to Wes, “Morning, sleepy head, how are you feeling?” as I kissed him on the forehead. I lifted my head back slightly and paused for a second, my mind processing the very warm and sweaty touch my lips just experienced. Wes barely moved, a little wince was all I got. I placed my hand on his sticky, flushed face, immediately the same sensations I felt with my lips, I was feeling with my hands. “Babe, you’re burning up, let me go and get the thermometer”. I quickly went and got the thermometer from our kitchen. As I re-entered our bedroom, something seemed off with Wes. He was usually a morning person and got up pretty quickly. He’d always rush down the hall to get Aubrey out of her crib, but this morning was different, he was still lying in bed almost lifeless. I placed the thermometer in his ear and waited for the beep. 42 degrees Celsius! My chest tightened and my body filled with this unsettling feeling as my brain registered the two little numbers on the screen.
I immediately started recalling to myself all of the things I needed to do if Wes’s fever got over 41 degrees Celsius. “The neurologist said if Wes’s fever was over 41 to place an ice pack on the back of his neck, have him sit in a cold bath or shower and give him Advil. Wait 40 minutes then check again. If nothing changes, call her.” I took a deep breath and shifted into nurse mode. “Okay, Wes, we need to get you into the shower. I’m going to go and get it ready; I’ll call you when it’s time to come in”. Getting that shower ready felt like the slowest minute of my life. I kept repeating “come on, come on” as I flicked my hand under the stream of water as if my hand had magical powers that would hurry up the process. Finally, the water was the perfect temperature, “Okay, Wes, it’s ready!”
As I headed back into our bedroom I heard a thud. When I turned the corner, I saw Wes standing head first into our wall. “WES!” I grabbed him to steady him upright, he stumbled back. I managed to get him to sit on the edge of the bed. “Babe, are you okay?”. Again, Wes didn’t say anything, his eyes closed as his head hung down to the ground. Something in me knew this wasn’t good, Wes had been sick before, he had been very sick before, but he had never been this sick. I helped Wes get into the shower where he sat on our little built-in bench. Then I called his neurologist. I tried to stay as calm as possible, not trying to be the overdramatic wife, but immediately she picked up on my underlying panic. She suggested I take Wes to a hospital roughly one hour away from where we lived. The level of care and medical support would be better for Wes. I agreed, so after my mom arrived to watch Aubrey, off Wes and I went.
Usually, Wes drove whenever we went out, he said I made him “nervous”, especially when I had to drive to places I was unfamiliar with. Well, good thing he was asleep most of the drive, because I was on a mission to get to the hospital and no one was getting in my way. I may have made a few wrong turns, cut 2–5 people off and did a terrible job parking, but I got us there in one piece.
Just after 11am, Wes and I walked through the double doors of the hospital together. Little did I know that in three months’ time, I would be the only one walking out of the hospital for good.
It was now 8pm. I was sitting alone in a hospital I was unfamiliar with. I had been waiting for hours to speak with someone about Wes’s condition. The last time I saw Wes, he was being rolled off on a hospital bed by two nurses. As I sat in the waiting area, I watched the people around me come and go. Some were sick, some were hurt, some were worried as they waited for their turn to be called.
Finally, a doctor who was wearing the typical white lab coat emerged from the double doors separating those waiting from those being seen. He called my name, then looked around the room of people waiting for an answer. I stood up and waved to him, letting him know I was the one he was looking for. He signalled for me to follow him through the double doors.
He led me to a small office-type room, then closed the door behind us. We both sat down in the chairs facing one another. He filled me in on how Wes was doing. He told me that Wes’s body was shutting down quickly and that he had been admitted into the ICU. He gave a brief explanation of the plan going forward, hoping to have a diagnosis soon. Then he paused, breaking eye contact as he dropped his head slightly to the ground. He took a deep breath, then raised his head to meet my eyes. He spoke in a soft tone, but his words came at me with such force. He told me that Wes was very sick and might not survive through the night. I didn’t say anything; I just sat there motionless. For a second, I thought maybe I heard him wrong, there’s no way my husband is dying. There was a long silence that filled the uncomfortable space between us. All I could do was nod my head slightly, acknowledging what he just told me. Then he stood up and said he would take me to see Wes.
As I entered Wes’s room, I was overwhelmed by the number of machines he was hooked up to. There were cords all over his bed, tape slapped on both of his arms, and machines pumping different kinds of medications into his body. Each machine had its own melody, beeping at random. Wes was sleeping, he didn’t even notice I had entered the room. I quietly walked over to the visitor’s chair that was placed near the window, set my stuff on the floor and sat down.
I watched as doctors, specialists and nurses came into the room, asking questions, requesting lab work, assessing Wes, administering drug after drug after drug. I just sat there quietly, in the stiff and cold hospital chair, trying not to get in the way as I watched my husband lay in the bed. My body was present in his room, but my mind was in another place. I was so consumed in my own thoughts, trying to process what was happening. I kept thinking, “Is this how it ends? Just like that?”. No matter how I phrased it, no matter what any doctor told me, I wasn’t ready to say goodbye.
Each hour that passed felt like the longest hour of my life. I didn’t move, I didn’t speak, I just sat there watching Wes. The beeping of the machines filled the room’s emptiness. Numbers popped up on the monitor’s screen, changing every few seconds. I closed my eyes and took a deep breath. “Just make it through the night,” I whispered. I must have dozed off after that because when I opened my eyes, I could see the morning sun starting to illuminate through the curtains into Wes’s room. I checked my phone, 6:15am. I sat up and checked on Wes. The machines were still going and he was still breathing. “He made it through the night! YOU MADE IT THROUGH THE NIGHT!” I quietly said with excitement. Even though I knew things were still questionable, Wes making it through the night meant we had another day.
Later that morning, a team of doctors and specialists came into Wes’s room. They all gathered around his hospital bed, eyes on me. The head doctor spoke, explaining Wes’s condition. He went over the results from Wes’s tests and was finally able to give us a diagnosis. Three letters that would change our lives forever, HLH (Hemophagocytic Lymphohistiocytosis). The doctors prepared us for the difficult journey ahead, with the end goal being a stem cell transplant. They were honest and blunt, masking any emotions as they delivered the news. I sat there numb to every word, trying to process the severity of the situation. All I could think was, “Why him? Why us?”.
Wes fought with everything he had, determined to be the miracle story everyone hoped for. When his doctors predicted he wouldn’t make it through the night, he not only proved them wrong, but he added an extra 12 more weeks, joking that they couldn’t get rid of him that easily (dark humour was Wes’s specialty).
Against all odds, Wes went from being unable to talk, sit up, eat, or drink on his own to slowly regaining his strength. He eventually ditched his walker and managed to take a few steps without support. But the unpredictable nature of Wes’s disease made it difficult for his medical team to navigate. Treating his condition was a delicate balancing act—fighting the illness while trying to prevent further harm to his body. Each new day meant multiple blood transfusions, steroids, chemotherapy, and immune suppressants. The longer Wes held on, the more stress his system was under. Ultimately, Wes’s body reached its limit, his fight was over.
77 days in the hospital
89 blood transfusions
68 platelet transfusions
9 rounds of chemotherapy
7 rounds of partial chemotherapy
84 doses of steroids
1 cardiac arrest
Life support
9 years together, endless memories created, a life full of promise and adventure was over in one final breath.
It was a long journey for Wes, but he was a warrior throughout it all. He faced every challenge with a smile on his face and two thumbs up. He never complained or played the “woe is me” card. He accepted what life handed him and gave it his all. Even though Wes’s outcome wasn’t in his favour, he will always be our champion.
Wes might not have come home physically; but he will always be home in our hearts.
In Loving Memory
Wesley Gray
March 13, 1991 - May 3, 2022
"One Step at a Time"