Twelve hours can change everything. On November 12th, 2019, my mom passed away from complications caused by CLL(Chronic Lymphocytic Leukemia). After 22 months with CLL, she had one bad day. One bad day, twelve hours in the hospital, and then she left to meet her heavenly Father and see the face of Jesus. Fourteen days later it still seems so hard to believe that everything changed so fast. How did we get from a diagnosis with a chronic condition to saying good-bye?
A Diagnosis of CLL
My mom walked around for 64 year as the definition of a healthy person. She suffered from not one condition, took no medicine, and rarely even added vitamins to her daily routine. Mom was strong, cared deeply for others, and took care of everyone around her. She went for a routine physical and something did not look right with her blood work. This blood work started a myriad of tests and doctor visits. Six weeks after starting her long awaited retirement came an official CLL diagnosis.
In a lot of cases CLL is considered a chronic condition, more of an annoyance than anything else. Mom felt completely fine. How could she have cancer? She made the decision to keep things to herself. In her words, “I don’t feel sick. I don’t look sick. Why should I tell anyone I am sick?” So began a two year journey with only our immediate family knowing of the CLL’s existence. It was mom’s diagnosis, so we followed her lead.
The CLL Begins to Change
The first 12 months with CLL were relatively uneventful. Mom found a wonderful doctor who she trusted, making the regular visits more bearable. Then the tests started to change. The numbers started to be skewed unfavorably. Mom would start on steroid treatments, the numbers would go back in line, and then the cycle would repeat. Steroid treatment is not a long term solution, so it was time to look into other options. It came down to two choices, a daily pill or a chemo treatment plan.
The chemo treatment promised five years of normalcy. Six months of treatment followed by up to five years of normal. Mom hated the idea of being sick. She hated the idea of taking medicine. Mom wanted a chance to just live her life as she always had, with a few extra blood tests thrown in. So we followed her lead, we followed her plan; we prepared to support her through chemo.
One Treatment Down
The first treatment seemed to go well. The numbers looked better. The swelling in her lymph nodes started to go down. She was tired, which was remedied by more naps. She was keeping up with her daily routines, even babysitting her grand babies while Dad and Adam took care of yard work. On November 11th, an unusual snow fall hit southeastern Michigan. Mom was tired, but the weather gave way to a perfect opportunity for rest and relaxation. Knowing she was tired, I made plans to hang out with her while Dad bowled the next day.
Early Morning Calls
My phone rang at 7:50am on the morning of November 12th. I was still in bed because school was canceled due to inclement weather. Dad told me mom felt incredibly weak. He called Adam, who was at the house and they were preparing to take mom to the hospital via ambulance. He promised to keep me posted. I hung up the phone and cried. Every ounce of my soul prayed for mom’s health, praying for the doctors to find a quick solution and send her on her way home.
Dad and Adam were with her in the ER. They told me not to rush; right now the doctors were just running tests. They texted me updates, her red blood cells are low, she needs a blood transfusion, and will be moving to the ICU at some point. I worked on my blog, cleaned my house, and fed my children. When I ran out of things to keep my mind busy, I left for the hospital. First I stopped at Shaun’s job to pick up the key to Mom and Dad’s house. Then I ran over to their house to pick up dad’s medicine. Finally, I was on my way to the hospital. Why does everything always take so long?
Arriving at the hospital
The ER was understaffed and busy when I arrived, so I had to wait for an eternity to be directed back to mom’s room. Adam was watching for me, ready to prepare me for what I was walking into, “It’s going to be worse than you think.” I walked into the room and saw the rock of my universe agitated, unsettled, and so very sick. My heart dropped into my stomach. I went to her side, held her hand, and tried to calm her restless body. “I’m here mommy. Just rest, it’s going to be okay.”
A parade of doctors and nurses were in and out of mom’s room. Telling us what they were doing, what the plan was moving forward, and mapping out our next steps. Finding the correct blood match was proving to be difficult. Mom’s antibodies were unusual, probably due to the CLL, and we needed a perfect match. Without a perfect match, the CLL would attack the blood as a foreign body and we would be right back where we started. It was time to move up to ICU and continue the current treatment while continuing to look for blood.
We started talking about all the phone calls we needed to make when we settled in upstairs at the ICU. No more time for secrets, all our loved ones needed to know the situation. Adam and I were texting updates to Christina and Shaun and decided we would call when we were settled upstairs and have them join us at the hospital. I had already called in a favor and had someone home with my kids. Praise God for amazing friends and flexible work environments. We gathered all our things as the nurse started preparing the IVs and monitors for the trip up to ICU.
I watched as the nurse worked and noticed how calm mom was. I looked and thought she seemed too slouched down and we should help her move before we headed upstairs. At that same moment, the nurse tried to rouse her and there was no response. My dad started talking to her and the nurse called for help.
In three seconds at least 20 people were in the room with mom. One of my favorite prime time medical dramas unfolding in front of me, but this was not TV, this was my real life. The three of us stayed in the hall right outside the room. Hospital staff offered to take us to a waiting room. We declined. They brought us chairs instead. We were not moving. We held each other up as we waited. I prayed the Our Father over and over, unable to form any other clear thoughts. My only words, “please save my mom.”
Doctors updated us every few minutes. After what seemed like hours, she was stable and we re-entered the room. Now fully intubated with a central line, she was receiving a blood transfusion. Non-matching blood is better than no blood. It was time to make our way upstairs to ICU. We walked together, my dad helping to move mom’s bed. At the ICU, they asked us to stay in the lounge while they got mom settled. We sat together emotionally overcome by fear and worry.
Moving to the ICU
My Uncle Paul and Aunt Pam were the first to arrive at the hospital. We gave them the cliff notes version of the day and we started making plans. Who knows? What calls need to be made? Adam called Christina and I left a message for Shaun to call me. We looked at the time and decided 22 minutes was long enough and we barged our way into the ICU. Waiting is not our specialty.
The nurses were still busy setting everything up, so many IVs and monitors and medicines. They did not seem bothered by our presence, but we did move to the hall. ICU has huge glass windows, so it feels like you are in the room even when you are out. I talked to Shaun and made plans for him to come and Adam went down the hall to wait for Christina. As I watched in the hallway, mom crashed again.
The room filled with doctors and nurses. I ran down the hall to find Adam, who was with Christina. The three of us rushed to the room and watched as they worked to revive her. Again I prayed the Our Father over and over. The only words I could muster as I cried. I prayed for mom’s strength, the doctor’s wisdom, and for miracles in the face of adversity.
Once mom was stable, we entered the room. I held her hand. Dad handed his phone over to Uncle Paul who started making all the important calls. The doctors asked to speak with us. They led us to a small room with a conference table and we sat together waiting to hear next steps.
We sat at the table in that little room and listened to the doctors describe the situation in detail. They described the critical nature of her health, the treatments they were trying, and the inability to find the correct blood match. At this point, mom’s heart had been restarted three times. The doctor described in detail what happens in the body every time your heart stops and the probability of a neuro recovery after each time. He told us it was time to make a choice on whether or not we would continue to perform life saving measures should her heart stop again.
I lost all breath at this idea. I knew exactly what my mom would want. Without a question in my mind, I knew her wishes. I was not ready to say them out loud. We all knew. Tears came rushing forward at the thought. Mom would want to stop. We took a little time, going back and forth between one more time and stopping. I knew in my heart one more time would be for me not her. Ultimately, as a family, we decided it was between mom and God now – no more extraordinary measures.
Last Moments Together
In less than an hour the ICU filled with our closest family and friends; our people, all together supporting each other. We filled the room and the hallway. I held my mom’s hand, my rosary beads wrapped around my hand, silently praying for miracles. The hospital chaplain called to have a priest from church come to the hospital. Shaun and I found ourselves staring at the numbers on the monitors, willing them to improve.
Father Lang arrived and performed the Sacrament of the Anointing of the Sick. He explained that the sacrament was no longer called Last Rites; it is a sacrament of healing. The healing can be of the body as health improves or a healing of the spirit as it enters eternal life with the Lord. Together we celebrated this amazing sacrament with my mom.
A woman of such immense faith, it felt as if she was waiting for this final sacrament to say good bye. As Fr. Lang exited the room, we watched as her numbers began to sink lower and lower. The doctor explained to us that at this point they would start chest compression. But instead of flooding the room with doctors, the monitors were silenced and we said good bye and I love you to the strongest, most loving and caring woman I have ever known – my mom and my very best friend.
Some Miracles are not Perfect
I spent twelve hours praying for a miracle. The funny thing about miracles is they do not always happen in the way you expect. My mom had cancer for 22 months and she had one bad day. One bad day in 22 months of days is a miracle. In 22 months of battling cancer, mom was admitted to the hospital one time. One hospitalization in a 22 month battle with cancer is a miracle. Mom lived her life for 22 months as she always had, with friends and family enjoying what the world put in front of us. Mom lived every moment to the fullest, with the deepest faith and trust that God’s timing would always be perfect. Having such deep faith, trust and strength is a miracle.
Twelve hours changed my whole world. One day changed the way I will live the rest of my days. Now I have important choices to make. How will I live the rest of my life? I will continue to pray for miracles and accept them however they come. My life will be an example of Faith, Love, and Strength, because that is what I learned from my mom. I will love my family well and be present in their lives, remembering that God’s timing is perfect. Twelve hours can change everything and I will make the most out of every minute.