“Doctor…” The nurse interrupted. Nash Stringer was quickly whisked away from the room in the ER where his wife lay. He was placed in a family lobby with nothing more than, “We’ll be communicating with you as we have more information.” Nash’s wife, Laura had suddenly collapsed at home, moments ago. Only 32 and no known health issues, her episode was baffling and alarming. Walking quickly, the nurse had already made her way back to the room that held so much of Nash’s world. Laura had started to seize and her nurse spotted it immediately as Nash and the doctor were conversing at the foot of her bed. The quick action of removing Nash from the situation spared him the terrifying visual that ensued. The seizure became violent. Laura was failing to respond to multiple attempts to medically halt the seizure and more tests were ordered after the seven minute ordeal finally ended. At 2am, Nash was pacing the halls when another doctor he’d not yet met came to introduce himself. “Nash? I’m Dr. Larson,” as he gestured toward two empty chairs in a quiet, dimmed corner of the small lobby, he began slowly and deliberately explaining Laura’s state. Nash stared at a stain on the busily patterned carpet while the words fell like boulders on his heart,”…a mass on her brain…” his voice became a sound that faded out and Nash could think of nothing other than the obvious. “Is she gonna be ok?” It was too soon to know. And, with rote compassion, the doctor disappeared.
Across town, the fourth floor of the children’s ward was rather quiet, save the occasional buzzers and dings and routine checking of vitals, disrupting sleeping little ones and their parents resting nearby in recliners-turned-beds. It was a family friendly unit and parents were offered creature comforts that allowed for as convenient a stay as possible while their children received critical care. While the halls were brightly painted and murals of recognizable, classic childhood characters adorned the floors, the weight of weary emotions could be felt thick as a breezeless summer’s night. Prognoses hung like dark clouds under the florescent lights and no amount of bubbles, balloons, toys or ice-cream could diminish the fact that these kids were fighting for their life. One of the grimmest cases, was little Marley Tabor. Marley was only three years old, diagnosed with acute lymphocytic leukemia. Given mere months to live, her parents jumped at the chance to enroll Marley as a participant in a clinical trial to treat her illness. Sara and Will hadn’t seen a day of normalcy since the diagnosis, and prior to the news, their daughter was so unlike her bubbly self, the bad times began before the the bomb. As they watched her sleep, her parents each held her hands, and each others. It truly was, “Wait and see.” Marley’s body appeared to be holding up to the treatment, and her food intake was up by almost two ounces, on average. At this point, there was no such thing as a “little” win. While her medical team remained realistic, they provided hopeful words that Sara and Will clung to like a life raft from a sinking ship.
Back in Laura’s room, Nash had been allowed to see his wife. She was sedated and her face was flushed and hot to the touch. In Nash’s limited experience with hospitals, there were usually long stretches with no appearance of medical staff. Not the case with Laura. Nash had lost count at five different scrub-donning personnel, in and out of her room. Some charting, others drawing blood, still others injecting syringes of medicine through her IV. No one was taking the time to explain who they were, or what they were doing. A quick smile, an occasional, “Can I get you some water or coffee?” was the extent of the interaction. Suddenly, Dr. Larson entered and Nash sprang to his feet. With nothing and everything to ask, he remained quiet as Dr. Larson informed him that Laura was being admitted. There was no time frame as to when she may be released. The doctor asked if Nash could meet with him the following morning in his office. “Yes…yes, of course.” Dr. Larson had ordered some stat tests and wanted to confer with other specialists prior to the meeting. Oncologists. Laura was planting flowers just the day before. Now, she was on the horrific path of becoming a cancer patient. Nash collapsed into his chair, moved closer to Laura’s bed, stroked her hair, and cried.
Morning came and Marley’s parents had gotten their average three hours of sleep. They took turns when the fatigue was too much, and went home to rest as the other sat vigil. As the a.m. rounds began, Marley’s nurse came in to draw blood and perform her lengthy checklist, all before breakfast. Just as the breakfast tray arrived, the doctor who’d first introduced the idea of the clinical trial, walked in. Relief and fear always showed up, like a team, when someone with answers, any answers, appeared. Dr. Evans was already speaking as he shook their hands. He wasted no time, but launched into an unusually enthusiastic fountain of information. As he prefaced his words with the standard bit about much needing to happen with Marley’s status before they could offer strong hope, his smile was perceptible. The big hurdle was Marley’s immune system not rejecting the blood stem cells. And, she’s responding beautifully…that being one of many concerns. “It’s looking…better. We still can’t ignore the obvious…what we’re doing is buying time. Long term remission would be nothing short of a medical miracle,” Dr. Evans said quietly. “But, it would definitely change her prognosis. At this point, I feel confident in saying, if her immune system continues to respond to the treatment, we’re looking at readdressing her expectancy.” Sara’s wide smile and teary eyes and Will’s triumphant laugh spoke volumes as to the bleakness they’d been facing in the coming weeks, months if they were lucky. The doctor advised he’d be by tomorrow around the same time and for them to both get some sleep. It was the best they’d slept since their world had shattered.
Morning came and Nash was early for his meeting with Laura’s oncologist. As he was escorted down the long corridor to the doctor’s office, he felt completely out of place. This building, these people, this discussion…these things were for others, certainly not for the two of them. But, as he stepped into the office, walls displaying lofty credentials, there was no denying where he was, or why. He took a seat, half leaning toward the desk of the man who could change his life in the following moments. “Nash,” he began, “I’ve found, over the years, there’s one way to communicate what a person in your chair needs to know. And, that’s to put a stop to all the waiting as soon as possible. I’m here to answer any questions you may have after you have all the information that we do, at this time. We worked with Laura extensively through the night. The seizure she suffered was due to the mass on her brain stem. We found it quite by accident during an MRI. If we’re correct in our findings, and we have reason to believe we are, seizures are one of many complications that come with Laura’s type of tumor.” Tumor. It was the first time anyone had said the word. Somehow, ‘mass’ seemed less severe, more hopeful. “We are still in the preliminary stages of understanding Laura’s progression, but our initial opinion is that the location of her tumor on the brain stem renders her inoperable.” Nash stared blankly at the man who’d just split the earth in half beneath him. “What…now. What next. How soon can she begin treatment?”… “There’s much we don’t know. We do know two things. It appears to have been growing for some time, and we can’t remove it. Our best hope it to slow the progression and keep her living as normally as possible as we uncover the details necessary to formulate a plan.” Nash suddenly knew hopelessness and determination could exist on the same plane.
After dinner, volunteers at the Children’s Hospital would come in each evening and assist with bedtime routines, reading books, playing quiet board games or strumming a bedtime song on a guitar. It was a cherished ritual by volunteers, kids and staff, alike. This particular evening, as Marley was choosing her storybooks, Dr. Evans made a surprise visit just as Sara and Will were walking out for dinner. Marley enjoyed her time alone with Miss Nancy, who’d been visiting her for several months. “Glad I caught you…I’m in surgery tomorrow morning and was hoping to see you tonight. I just read the report from Marley’s latest treatment. Let’s go to my office.” Sara and Will glanced at each other with a knowing look of…not knowing. They didn’t detect the same zeal in his voice this time, but, a level of urgency that stirred up a familiar anxiety that never felt familiar. Inside his office, Dr. Evans sat on the edge of his desk, one foot on the floor, arms crossed. Sara and Will had no idea what prompted the unscheduled visit. Facetime with physicians was a commodity, as much as they tried to provide individual care, parents always wished for more. As he spoke, his words were measured, picking words like choice fruit to construct what he had to say. “Sara…Will…anyone who finds themselves in this hospital loses true north the moment they receive the news of the illnesses we treat. Not every child here is a fit for clinical trials. Marley was. How have her spirits been?” Will was hungry, tired, impatient and just as his fatigue was about respond for him, Dr. Evans spoke again, before he could answer. “Has she had a change in energy level? As her parents, do you notice that she is any less alert, disinterested…things of that sort?” “Just the opposite,” Will blurted. “She sang yesterday for the first time in weeks. She’s inquisitive about the world outside her window. She seems…happier…for her circumstances.” Dr. Evans finally beamed a huge smile. “Wonderful. That’s wonderful.”…Still unsure of the purpose of the conversation, Sara asked if there were any updates, with a look of confusion. “Indeed. We’ll be meeting as a team on Thursday. As one of the possible side effects of her new medications is depression, it was the last bit of input I needed to continue her plan, unaltered. For now, I just want to let you know that, in every way, Marley’s responding better than expected to the treatment. We knew it wouldn’t cure her in her late stage, but her expectancy is unofficially lengthened. Thursday, it’s official.” Understanding that the time was measurably longer than the months they’d been given originally, even without being told the new “goalpost,” timeline, they took it as miraculous news. Laughter, tears and repeated “thank-yous” as they clung to one another and stood to hug Dr. Evans. He’d become a part of the family in the least desirable way. But, he’d been as supportive and compassionate as they could have asked, from the very beginning. Just as Dr. Evans was winding down his quick visit, his cell rang. His wife. It was their anniversary and he’d promised to be home, “on time” tonight. “She’ll forgive me this time,” he said. She tries not to be, but she is emotionally attached to the vague good news when a ray beams down on this place. As he turned off the lights to leave his office, Sara and Will continued to feel the light in what had been their dark tunnel from the moment of Marley’s diagnoses.
Laura was transferred to a facility with specialists more skilled at treating her rare illness. As weeks passed, and more specific details were studied regarding her tumor, Nash grew ever more discouraged. While Laura was no longer under sedation, her mood was understandably morose, as Nash attempted, and failed, at keeping her world as positive as possible. They vacillated between streaks of hope and doom. As they awaited the arrival of her lead physician bearing the biggest news, to date, expectations were fought as acceptance took flight, leaving them futilely projecting life, both together, and separately. As Dr. Klein arrived, Nash gripped the hand of his beloved a bit tighter. Dr. Klein was one of the most respected, in demand oncologists in her field. She began by explaining she had thoroughly combed through the results of every test, lab, MRI and every other report in Laura’s chart. I feel confident that we have gleaned all the information required to offer a prognosis. Less afraid than ready for answers, they braced, mentally and emotionally.
At that exact moment, now hundreds of miles apart, Dr. Evans and the team was meeting with Sara and Will on Marley’s official reassessment. As each doctor, Evans and Klein, had done thousands of times before, after the standard preface to a situation that was anything but standard, they looked into the searching eyes of their desperate clients and said, “Two years.” Sara and Will could only nod and smile. A sense of gratitude and relief, at least for now. From weeks to plan a funeral, to now being able to plan her next birthday party, they wept with joy. The team half joked that they expected invitations to her coming home party, which would be determined within a month. In another hospital, another room, with another patient, Dr. Klein remained silent as Nash embraced Laura, helpless to buffer the new distress that each now carried on top of the suffering since the night of the seizure. As they mourned silently, Dr. Klein finally spoke, “I’m sorry. If I can answer any questions, and help you from the medical standpoint, I’m here to do just that. If you’d rather be alone to process this difficult news, I’ll come back when you’re ready to discuss things further. Slightly more than a whisper, Laura said, without emotion, “Could we have some time?” Dr. Klein stood, looked at Laura with sincere empathy and simply said, “Whenever you’re ready.”
Sara and Nash could hardly wait to see their little girl. As they entered her room, their faces caused an excited reaction from Marley. She scooted to the end of her bed and swatted each side of the mattress, indicating that mom was to take one side and dad the other. She put one arm around mom, the other around dad and, in that moment, all felt right in the world. Two years…
As Laura and Will had seen so many specialists, they felt as they were far beyond a second opinion. The prognosis was no error. Laura’s life had been abruptly and painfully abbreviated. Thirty-four was too young to die. As they began to talk about the news, they dreaded the phone calls they knew must be made. The long term plans that must be cancelled- the trip to Peru for their 8th anniversary, the dream of one day sailing around South America, children, grandchildren, reaching milestones, together. Two years…
Marley Tabor, age 5 and Laura Stringer, age 34 died on September 14th, 2018.
Reality is the illusion. Perception is the reality. D. Murphy
Tangled Lights 