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 demeaner 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. 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 was 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, MRI’s, X-rays, ultrasounds, biopsy’s, 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.
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, nose bleeds, excessive coughing, slurred speech, memory loss, personality changes, anxiety, depression, enlarged spleen, inflamed liver, muscle weakness, multi-organ failure.
How could the doctors get it so wrong? How could they not find a diagnosis?
HLH (Hemophagocytic Lymphohistiocytosis).
An extremely rare immune disease that affects roughly 1 in 50,000 people per year, majority of those are children under three years of age. A disease handed to innocent victims, forced to fight the toughest battle they will ever have to face. 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.
February 18, 2022 is a day I will never forget.
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 experience. Wes barley 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’s usually a morning person and gets 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. 42.8 degrees Celsius! My chest tightened and my body filled with this unsettling feeling as my brain registered the three 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 make the water cooler faster. 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 much, 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 over dramatic 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.
That day Wes was admitted into the ICU in multi organ failure. His body was shutting down so quickly that the doctors weren’t sure if he would make it through the night. Doctors and specialists came into Wes’s room, asking questions, requesting lab work, assessing Wes, administering drug after drug after drug. I just sat there, in the stiff and cold hospital chair tucked back close to the wall. Sitting quietly, trying not to get in the way as I watched my husband lay in his 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 rooms emptiness. Numbers popped up on the monitors 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, 7:15am. 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 specialist 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 test 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. They were honest and blunt, masking any emotions as they delivered the news. I sat there numb to every word. I keep thinking “why him? Why us?”.
Wes spent three months in the hospital. The first three and a half weeks in the ICU and the rest of the time on the stem cell transplant floor. During that time, he had countless blood and palette transfusions, round after round of chemotherapy, high doses of steroids, countless MRI’s, CT scans and ultrasounds and many other drugs and procedures trying to give him the best chance to beat this horrible disease. His doctors, who at first didn’t think he would make it overnight, were now hopeful for a miracle. They couldn’t believe how long Wes was holding on. This man’s organs were barely functioning when he first entered the hospital and now, he was sitting up in his bed, chatting and eating.
Wes spent three months in the hospital, fighting with everything he had. He was so determined to come home, he would say to me every day “honey, get that bed ready for me, I’ll be back before you know it!”. That man loved his bed! If napping was an Olympic sport, this man would win gold every time.
It was a long journey for Wes, he fought so hard, but unfortunately one week before Wes’s death we were given the news we both knew was coming but were too stubborn to face. Wes’s condition was terminal. Even though he was stronger now than he was 3 months prior, his organs were under a lot of stress from all of the medications he was on.
Sadly, on May 3, 2022 after 12 long and difficult weeks, Wes passed away. Wes was a warrior, facing every obstacle 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; he will always be home in our hearts.
In Loving Memory
Wesley Gray
March 13, 1991 - May 3, 2022
"One Step at a Time"