Keeping Watch by Night

Continued from Previous Post… The Sound of Silence

 

“Honey, I hate to tell you, but it does not get more serious than this,” Richard said about our daughter Alyssa after her emergency MRI confirmed a brain tumor, hemorrhage and probable cancer diagnosis. He told me this over the phone as he drove from Arkansas to Oklahoma to be with Alyssa, Andre and myself. Richard is a physician. I knew he spoke the truth. All the facts supported his words:

• Alyssa had been to the emergency room on September 6th and 7th because of headaches and vomiting. Each time she was treated for a stomach virus and sent home. Within 45 minutes of my arrival on the afternoon of September 8, 2017, it became apparent that Alyssa was dealing with more than a stomach virus.
• Alyssa experienced two seizures.
• Alyssa experienced a plummeting heart rate as she lapsed into unconsciousness.
• The medics and firemen responded to our 911 call within minutes and stabilized Alyssa’s heart rate.
• A semi-conscious Alyssa was taken to the emergency room by ambulance.
• Once she arrived, her blood pressure plummeted as well and was critically low. It was stabilized.
• The CT scan revealed a mass in her brain.
• The MRI gave us a clearer diagnosis. Alyssa had a small brain tumor in her left frontal lobe with a significant hemorrhage. The swelling in her brain caused by the hemorrhage was affecting her heart rate and blood pressure. The doctors were administering steroids to reduce the swelling.
• The neurosurgeon believed the tumor to be melanoma that had spread to her brain.
• The nurse told Andre repeatedly to call in Alyssa’s family and friends.

Yet, as Andre and I kept watch over Alyssa that night, my ability to fully comprehend and understand her critical health condition was mired in shock and a lack of medical knowledge.

——Thank God ——

The shock I experienced held my burgeoning despair at bay for a time. I did realize that as each event and medical report rapidly occurred, they escalated in significance for Alyssa, for Andre, for their boys, for all of us. I pondered the possible consequences, but subconsciously, my brain found a way to cope, to suppress the brewing fear.

But it was more than the subconscious activity of my brain that kept me from sinking into despair in the midst of Alyssa’s trauma. Equally important was the conscious choice I made based on my faith and my upbringing. Strength in the midst of adversity was lauded in my family. Right or wrong, I was taught to not give way in a crisis. I learned there was certainly a time for grief and despair, but not in the middle of the crisis. Equally important, I was taught, against all odds, to hold on to hope.

“The roots of my raisin’ run deep. I come back for the strength that I need. And hope comes no matter, how far down I sink. The roots of my raising run deep.” Songwriters: Tommy Collins / Merle Haggard

This was not a callous, unfeeling, put on kind of strength that guided my actions throughout that long day and night. It was just the opposite. It was a mother’s grit – loving, resilient and steadfast- tested and strengthened through the years by trials, both big and small. And besides I reasoned, if I drowned in despair, what good would that do me or anyone else? My family needed me.

Alyssa was critically ill. Andre and I were not allowed to travel with Alyssa as they transported her from the emergency department to the intensive care unit. That time spent away from Alyssa is a blur to me. I remember feeling confused as the nurse gave Andre and me directions to the ICU department. I depended on Andre to lead the way.

What is crystal clear in my mind are the memories of my interactions with Alyssa throughout that pivotal day. I am grateful. These memories help me write our story. In writing about these experiences, I process, in a safe environment, a very frightening time. As a result, the negative emotional energy surrounding this time is lessened for me. There are also sweet memories that have emerged during Alyssa’s illness, and I cherish each one. As I record my memories, a picture emerges. Like a photo tucked into a family album for safe-keeping, I can go back and look at these memories as often or as seldom as I like.

Alyssa has told me the stories from this traumatic time are also important to her. In many ways, I am a memory-keeper. Alyssa is missing significant parts of her story, because she was either unconscious, semi-conscious or sleeping for several days. My memories (and those of others) help Alyssa piece together the puzzle of what she and her family and friends experienced during this critical time. Can you imagine how profoundly it would affect your well-being if you woke up and realized your thoughts had disappeared and you had little or no memory of one of the most important events of your life? To be unaware of these facts, or to have forgotten these details, is difficult for someone as fact-driven as Alyssa. So I search my mind, my journal and text messages for these missing pieces. As I write down my own memories, I am able to hand Alyssa a lost puzzle piece of her own story. I pray she finds peace as she begins to fill in the missing pieces.

 

Late Evening, September 8, 2017, 10:00pm – 10:45pm

Alyssa’s ICU room was tiny in comparison to the emergency room she had occupied for the past few hours. Both rooms were dimly lit. As I entered, I noticed a patient bathroom to my right with the light on and the door slightly ajar. On the wall opposite the entrance, one-inch metal blinds covered a large horizontal window. Slivers of bright golden light escaped between each slat of the closed blinds. The blinds, walls, floor and bedding were all shades of white. Alyssa’s bed sat in the small alcove to my right, parallel to the window. Above the head of her bed, slender shafts of pale yellow light were projected from the window onto the wall. The shifting shadows of her emergency room were replaced with these individual strips of static light. I squinted to distinguish Alyssa in the bed. She lay perfectly still, her pale face haloed by her long brown hair that lay mussed upon a bleached pillowcase. My silent, sleeping angel.

I carefully moved around the end of Alyssa’s bed to stand in the narrow space between the window wall and her bed. From there, I could touch the metal blinds behind me and Alyssa’s bed in front of me. I could reach out with my left hand and touch her IV pole. Next to the IV pole stood her portable patient monitor screen, its green and yellow numbers faithfully updating Alyssa’s vital signs ——— Stable. The side rails of Alyssa’s bed were padded, wrapped in light weight flannel blankets. These make-shift bandages of white, held temporarily in place with clear medical tape, created a safe space for Alyssa. In the large emergency room, Alyssa had seemed to float on a vast sea of uncertainty, but now in this small ICU room, it looked as if she lay sleeping within an inflated life-boat, moored firmly and securely for the night. Yet. The uncertainty remained.

The light from the window created a pale glow throughout the room. A nurse that looked to be in her early 20s, wearing navy blue scrubs, stood opposite me, near a computer counter. She organized various items onto a rolling tray. Momentarily, another young nurse wearing matching scrubs, entered the small room. She carefully walked past me to monitor Alyssa’s IV meds. Because of the limited space, I moved out of her way and tucked myself into the outside corner, near the end of the bed. As she leaned over to check on the tubing and IV catheter inserted into the crook of Alyssa’s right arm, I realized Alyssa’s wrists were wrapped and padded and her arms were restrained- fastened by white cloth straps to each side of her bed. To see my daughter restrained was perplexing and disconcerting.

Why are her arms restrained? She never moved a muscle in the emergency room. What do they anticipate?

As the young nurses left the room, I was alone with Alyssa for the first time that day. I moved from the corner to stand near Alyssa. I longed to hold her close, however, I did not want to disturb her. I carefully stroked stray strands of hair away from her forehead. How did her hair get to be this dark? She was so blond as a toddler. I was surprised by an unexpected desire for holy anointing oil or holy soil or any substance that I could actually administer for her healing. I questioned this strange thought because healing ointments have never been a part of my faith tradition. But, I remembered Jesus once used mud on a blind man’s eyes and he regained his sight. I also believed Jesus didn’t need the mud to heal the blind man, so I quickly decided I didn’t need anything either. I wasn’t Jesus, but I was Alyssa’s mother and He was near. I bowed my head close to hers and while my eyes never left her face, I gently, ever so gently, caressed her brow with my fingertips, bringing them to rest over the spot where I understood the tumor and hemorrhage to be. I felt mystified. How can a tumor lay hidden somewhere inside my daughter’s intelligent brain? I whispered a prayer for her healing. Love lightened my heavy heart as I smiled down on this beautiful daughter of mine. My spirit swelled with peace. All that could be done was being done.

Alyssa’s new charge nurse entered the room. She was in her 40s, with dyed blond hair pulled into a ponytail. She smiled broadly as she introduced herself and explained that a standard hospital wing was temporarily serving as the intensive care unit, because the main ICU was being remodeled. Ah, yes. I had been watching Alyssa so intently that I had not stopped to question why the space was unlike other ICU departments I had seen. Now that she shared this information, Alyssa’s room made more sense. This explained why the room was so small and why there was a private bathroom within the space. It also explained why the commonly found glass wall that allows for easy visual monitoring of the patient, from the nurses station, was missing.

The charge nurse used her name tag and a code to access the computer. As the monitor screen lit up, more light suffused the small space. While the nurse chatted on about her daughter’s baseball team and the game she had been called away from to take care of Alyssa, I experienced mixed emotions. I felt reassured that a specially trained nurse was present to care for Alyssa. I also remember being surprised that nurses, like doctors, are on call. The nurse explained that for Alyssa’s own protection, her bed was padded and her arms were restrained. She said that once Alyssa woke, she might become agitated. Oh, I reasoned, this is why they are keeping Alyssa sedated, to keep her calm.

The internist on call, Dr. Love, came by the room to check on Alyssa and speak with her family. He was subdued, of medium build with dark hair. I would not recognize him if I saw him today, but I will always remember his name. Dr. Love had already taken Andre to view Alyssa’s MRI. Now it was my turn. The ICU’s large rectangular nurse’s station sat outside Alyssa’s room beneath bright fluorescent lights. Four or five men and women in medical scrubs were quietly at work. The nurse’s station provided easy access to the patient rooms along its two longest sides. There was also an entrance corridor to my left and an additional corridor to my right. We headed toward this 4th corridor with its closed doors at the far end of the nurse’s station. Midway down this corridor, we entered a small dark viewing room. Dr. Love placed Alyssa’s MRI film on a tabletop viewing screen. He explained that even with sedation, Alyssa’s movements during the scan blurred the results. Yet, clearly illuminated on the black film was the shape of Alyssa’s skull and a small white tumor surrounded by a grey mass. He walked me back to her room and explained that they would continue the steroids and that he would be available if needed. I remember feeling appreciative that he sought us out to show us the MRI. I wondered if his purpose in showing Andre and me this scan was to help us absorb a hidden reality that we could not see by looking at Alyssa. But even as Dr. Love showed us the scan results, my thoughts were primarily focused on her cancer diagnosis. I had been told by the neurosurgeon earlier in the evening that he planned to operate on Tuesday and remove the tumor and hemorrhage. I trusted this to be the case.

When I returned to Alyssa’s side, the charge nurse was still in the room. In fact, she only left Alyssa’s room, very briefly, a couple of times that evening. As she chatted about her family, I became curious about the golden light that continued to slip between the slats of the blinds. What is the source of that light? With my thumb and index finger, I separated a couple of the narrow slats. Far below, tall lampposts, like erect sentinels, lined the parking lot beneath the window. Piercing the darkness with that same golden light, they stood at attention, keeping watch below as I kept watch above. A red car was parked beneath a lamppost, bathed in a pool of light, its surface gleaming. Suddenly, the light illuminating the darkness filled me with hope. I was reminded of a mysterious Parisian street scene from a classic movie. Oh, what a lovely thought to escape into, if only for a moment . . . Always a lover of light, I turned toward the nurse, wondering if we could open the blinds. It was as if she read my mind.

Her words were kind, but direct, “Neuro-patients are sensitive to the light so we’ll keep the lights turned off and the blinds closed while she’s in intensive care.”

I remembered Alyssa throwing her arm over her eyes as the medics wheeled her gurney out of the house and into the bright sunshine. Yes, she was definitely sensitive to the light. I remembered Richard’s response when I gave him that same information over the phone- “I’ll be there as soon as I can.” I remembered Papa Fred’s response- “Most likely, something is going on with her brain.” Over the years, I have turned to these two physicians innumerable times for medical insight. I now realized what was different about their responses this afternoon. They were alarmed. While their voices remained calm, their reassurances were missing.

In the dim light, I looked down at my daughter’s motionless and silent body. While I did not understand the medical explanation for all Alyssa was experiencing, a little flame of understanding flickered and a thought suddenly crossed my mind. Why is Alyssa still asleep? I knew the doctor had ordered a mild sedative to help keep her from moving during the MRI. In the ICU, the nurse indicated they wanted to keep Alyssa as still as possible. I assumed that ongoing sedation was being administered to help keep Alyssa from moving, causing her to sleep so soundly. But now I had my doubts. I asked the nurse.

She responded gently, “Alyssa is not currently sedated. She’s unconscious because of the swelling in her brain. If the hemorrhage shifts and she can’t breathe on her own, we’ll put her on a breathing machine. But right now, she’s breathing on her own.”

Nuero-patient. So she wasn’t sleeping like I had assumed. She was unconscious. And I knew that a breathing machine was a nice term for a ventilator. I did have some understanding of the seriousness of placing a patient on a ventilator. Rapidly words and facts assailed me, competing for distinction: Seizures. Unconscious. Swelling. Tumor. Cancer. Hemorrhage. Shifting. Ventilator.

My brain acknowledged all these facts, but it was as if some barrier was in place. I could consider, but I could not comprehend the depth of Alyssa’s health crisis. However, as I looked at Alyssa’s wrapped and restrained wrists lying on either side of her motionless body, I knew there was one person who completely understood the danger his daughter was facing. I turned back toward the window and parted the blinds again. I gazed into the darkness that lay beyond the parking lot and streetlights. I envisioned Richard driving west on Interstate 40. Through the years, how many times had he made that same drive? Literally hundreds of times. But this was an entirely different type of drive. My heart ached as I considered the pain my husband was experiencing. I remembered his words, “Honey, I hate to tell you, but it does not get any more serious than this.” As a physician, he knew too much. There was no lack of medical knowledge on his part. As Alyssa’s father, he had to be scared out of his mind, driving as fast as he possibly could, praying God would spare his daughter.

I searched for stars in the distant night sky. I knew the stars were shining, but they were obscured by the bright lamplights. With a growing sense of dread, I felt my anxiety rising. My hands began to shake and my teeth began to chatter. I closed my eyes and prayed again for Alyssa’s healing. I prayed for Richard’s emotions and for his safety while traveling. I struggled to calm myself. Hang on Kimberly. You can do hard things. Do not lose hope. Richard will be here soon. I turned back toward Alyssa and placed my trembling hands on the fabric-covered bed rails, willing her to wake. Because I knew that while Alyssa drifted unconsciously in her padded life boat, and while I stood anchored by her side, her father was swimming with the sharks.

Lord have mercy.

 

This post is Part 5 of the story of how our journey with cancer began.  Read the rest of the story here:

PART 1: WHAT ARE THE ODDS?
PART 2: FIRST RESPONDERS
PART 3: #GODLOVESHERBEST
PART 4: THE SOUND OF SILENCE
PART 5: KEEPING WATCH BY NIGHT
PART 6: WHEN WORDS MATTER MOST
Part 7: Don’t Worry, Daddy
Part 8: A Mother’s Prayer

 

Photograph by Richard Harper, Moon Over Lake Texoma, 2018