Susan is a Valerie Fund mom.
In this short fiction story, she relays the events surrounding her daughter's diagnosis, what it meant for her family, and how those first fateful hours affected everyone. The need for support and information during this time is why The Valerie Fund exists.
Blue was Sophie’s favorite color; the color she saw in her mind when the middle school chorus sang “Bohemian Rhapsody,” and apparently also now the color of her face.
“You do not look well, and you are not coming into this classroom.” Madame stood at the door and flicked her hand in a vague outward direction, pursing her lips. “Your face is blue!” she exclaimed at an even higher pitch, eyes wide with concern.
Her frenemy, Caroline, whispered something to Brendan, who relentlessly picked on anyone who wasn’t in the popular crowd. They both laughed, passing Sophie and Madame on their way into sixth period. Embarrassed, she reluctantly pivoted away from her French classroom and headed for the nurse’s office, again. Mrs. Holmes would take her temperature and call her mom to pick her up; Sophie knew the drill. She had the flu a few weeks ago, but the fevers and fatigue just wouldn’t go away.
Her Dad had yelled at her again this morning when she wouldn’t get out of bed. Last week, she had overheard Mom telling him he needed to “parent more,” which led Dad to becoming much more attentive to things he would never usually notice, and it also put him in a bad mood.
“Dave, if I am going to be ready for my next concert, handle everything in the kids’ lives, and get dinner on the table, the least you can do is pay attention to what is going on around you!”
To Mom’s point, Dad was most attentive when Mom spent money and to everything that happened on the Golf Channel, but he glazed over the finer details of family life. Sophie had learned that Dad’s parenting switch tended to turn on only when Mom’s stress level went up.
“If you don’t have a fever and you aren’t vomiting, you are going to school. Someday, when you have a job, you won’t be able to skip work just because you don’t feel your best,” Mom chided over breakfast. Sophie could recite each word of the lecture she’d heard so many times, complete with the best imitation of Mom’s furrowed eyebrows. Her problem had nothing to do with not feeling her best, and everything to do with not feeling even remotely normal. How do you tell your parents you feel so much pressure when you breathe that it feels like an elephant is sitting on your chest? How do you explain to your teachers how very hard it is to do algebra or “apply yourself the way I know you can” on your English essay when your brain feels like it’s filled with sticky cobwebs and you are so tired you want to go to sleep on the lunch table?
Later that night when Mom tucked her in, Sophie sobbed, frustrated and exhausted. “Mommy, why don’t I ever feel good anymore?”
Her mom sighed and stroked her cheek. Despite her tough exterior, Sophie knew her mother adored her.
“I know this sounds strange, honey, but can I run my hands over your neck and tummy? I want to make sure you don’t have any lumps or bumps.” Sophie nodded and felt her mother’s cool, soft hands gently probing her neck and abdomen. Comforted by her mother’s touch, she allowed her heavy eyelids to drop and felt the familiar, feverish delirium settle on top of her like a damp weighted blanket.
The next morning, Sophie was surprised to wake up on her own. Not to her alarm, to her brother and sister bickering, or to Dad trying to get her out of bed to show Mom he was actively parenting. Instead, she heard a soft melody emanating from her mother’s violin.
Sophie had listened to Mom practicing for days now and could hum the red passage by memory. Sophie was the only one who knew this part of the trio was red, and she considered it her secret super-power. According to her mother, Sophie had this gift because of the music she’d heard when Mom was pregnant and playing in lots of orchestra and trio rehearsals. She liked imagining being tucked cozily in her mother’s belly underneath the violin, colors swirling around together above in a visual symphony. Once when she was three, she heard an out-of-tune guitar, and screeched, “It’s so green!” to the surprise of the music store owner. Green music was never good.
Sophie tiptoed down the stairs and peeked into the living room asking softly, “Why am I not at school?”
Mom gave her a half-smile. “Because I know you aren’t feeling well, and I wanted to give you a break. I made an appointment with the doctor.” They eased their way into the day together, no rushing about, which was a welcome respite to the usual frantic pace of weekday mornings.
After an early lunch of grilled cheese sandwiches and tomato soup over an amusing episode of The Office, it was time to head to the pediatrician. Sophie only ate a few bites.
“Would you like to stop for a hot chocolate?” Mom glanced over at her with hope as she backed the car out of the driveway.
Sophie was concentrating on a cover version of “Here Comes the Sun” playing on the radio, following the change in hue from orange to yellow, different from the original that was brown. “No, thanks, Mom, I’m full,” she replied, glancing over at Mom’s familiar furrowed brow.
They arrived on time, and after sitting in the brightly colored waiting room full of worn toddler toys for what seemed like an eternity, it was finally Sophie’s turn to see the pediatrician. Dr. Shay examined Sophie and told her mother not to worry in a clipped manner.
“So much is going around! If she still has a fever in three days, bring her in then, but there really isn’t anything we can do.”
Her Mom pushed back, “But she’s so thin and pale, and the bloodwork results from her last appointment were all out of whack.”
Dr. Shay sighed impatiently, “The bloodwork was off because she was sick when we drew it. She’s pale because it’s winter.”
Sophie knew Mom was going to call Dad in for more hands-on parenting soon. Dad also dealt with misogynistic plumbers, rude principals, unfair coaches, and anyone else Mom couldn’t cope with. The minute they got into the car, Mom called Dad, Dad called Dr. Shay, and he must have worked his calm, business-voice magic because Sophie soon found herself sitting in the children’s hospital waiting for a chest X-ray. She studied the cheerful animal artwork dotted around the waiting room meant to distract kids from where they were and listened to the green Muzak playing overhead. Green music was never good.
* * *
Jenny felt the pressure of being stretched in every direction. Surely, she would eventually be flattened into a puddle by the professional, family, and medical demands pulling at her. Just hours earlier, Jenny had taken her daughter, Sophie, to the hospital for a chest X-ray. The pediatrician was smug and dismissive, making it clear she deemed the scan unnecessary.
“But we’ll play it safe,” Dr. Shay had said.
Waging war within her was Jenny’s motherly instinct screaming that something was very wrong, and the embarrassment of being the panicky parent doctors gossip about.
After calling a sitter in to help, Jenny tucked Sophie in snugly on the couch with a mountain of pillows and a fuzzy turtle blanket, anxious to get on the road. Numerous conversations with doctors played on a loop in her head as she drove thirty miles into New York City for trio rehearsal. She had not prepared with her usual devotion and now tried to focus on the Brahms piano trio playing over the car speakers, willing the beautiful sounds to help her fingers sing the same notes from her violin. But thoughts of the flu diagnosis, the fevers, Sophie’s too-tiny body, her pale face, and the night sweats crept back. Two months ago, Jenny wondered if Sophie had an eating disorder, but now she only wished it was so straightforward.
A phone call interrupted the reverie of Brahms with the caller ID showing the pediatrician’s office. She answered quickly while trying to focus on fighting west-side traffic. NYC drivers all had somewhere important to be; a sentiment punctuated regularly by blaring horns, middle fingers, and pedestrians encroaching on her car like ants on a cookie crumb.
“The results are somewhat unusual, but I’m not really worried. It is likely just pneumonia,” Dr. Shay explained clinically.
“Unusual how?” Jenny queried.
“She has a buildup of fluid between her lungs and chest. We also see what appear to be enlarged lymph nodes around her heart, possibly due to the way she was positioned on the table during the X-ray.” Dr. Shay’s parting directive increased the noise in Jenny’s head a decibel higher. “The antibiotics I’m calling in now should do the trick, but if her fever spikes, take her directly to the hospital.”
Her instinct was to turn around, but the big concert was only a week away. She considered traffic and decided to fit in the rehearsal and let rush hour subside. Jenny parked the car near 10th Avenue and 55th Street in a dank garage still dotted with tacky Christmas decorations. She walked briskly in the sub-freezing temperatures to her cellist’s apartment, the familiar sweet-and-smoky smell of the nut carts wafting around her. She felt the pressure of the clock, her lack of preparation, and the confusion about the doctor’s call converge into a feeling of nausea and panic.
“Sorry I’m late,” Jenny swept into the apartment and unpacked her violin while stripping off layers of outerwear simultaneously. The pianist, Alex, and cellist, Robert, welcomed her with good-natured pecks on the cheek.
The rehearsal was a disaster with Jenny stumbling over technically difficult passages. Chamber music required so much connection and communication for the chemistry between the musicians to bring the music alive and fill it with spontaneity. Their lively personality on stage was one of the reasons they had enjoyed such success as a chamber group. But today, Jenny was so focused on executing the notes that interpretive communication through movement, breathing, and eye contact was either absent or ill-timed.
Seven years into their relationship as a trio after graduating from one of the best conservatories in the country, it was clear to Alex and Robert that their violinist, manager, and cheerleader was struggling.
Robert stopped the rehearsal, “Jenny, should we reschedule?”
Jenny tried not to tear up. “Sophie is sick again.” The concert in the new hall and all-important reviews to follow made her excuse ring hollow, even to her. After reassuring her trio-mates, Jenny hurried back to her car wanting only to be back home with Sophie.
The warmth of the cozy kitchen embraced her after the exhausting commute and Jenny pecked both nine-year-old Simone and eleven-year-old Ben on the cheek. They balanced on stools eating pasta and bickered over what may or may not have happened on the walk home from school. Her husband, Dave, kissed her on the forehead absentmindedly.
“So, pneumonia, huh?” Jenny could tell he was preoccupied with work as well as the news about Sophie’s X-ray.
It was like him to assume everything was fine until it wasn’t, so his nonchalant manner didn’t surprise Jenny. She peeked into the family room to see Sophie sleeping peacefully. Jenny poured a glass of wine hoping to quell her anxiety but found the taste unappealing. The burgundy liquid, usually a perfect companion to her well-crafted dinners and the start of a relaxing night, felt acidic on her tongue and unsettled her empty stomach.
Jenny leaned against the kitchen counter, hoping to untangle the day’s events with Dave. “It doesn’t make sense. Pneumonia explains some things, but not others, and I don’t like the sound of enlarged lymph nodes around her heart. Wouldn’t an X-ray tech know how to properly position a kid on the table?”
“I don’t know, honey, but I think you need to trust the doctor and not get ahead of yourself,” Dave said.
Jenny had been ahead of herself for weeks and was frustrated with Dave’s lack of concern. She heard a whimper from the couch and walked over, putting hand to forehead, as Sophie gazed at her with eyes like saucers reminding her of baby-Sophie. In an instant, Jenny could tell she was burning up. She scrambled to the kitchen cabinet for a thermometer. The screen on the device circled like a digital crystal ball that would tell her what to do next. The beep pierced the air and Jenny’s hand trembled at 105.8, a reading she had never seen before. Weeks of concern and the day of new worries finally erupted.
Jenny jumped off the couch wide-eyed and barked at Dave. “We need to go to the ER, now! Grab Sophie’s slippers and blanket.”
Dave bound into action. Ben and Simone paused their latest argument, eyes registering alarm. Jenny tried to collect herself, but the terror she felt made it hard to mask the panic. She was usually the sensible one, the peacemaker, the one who brought down the level of angst in the house.
“Mom, am I going to be okay?” Sophie sensed her mother’s unmistakable fear.
Jenny gave a soothing reply, but assurance would only come by finding out what was wrong. Jenny held Sophie’s tiny teenage body in a half-embrace, bundling her into the car gently.
When they arrived at the hospital, the concern on the triage nurse’s face mirrored Jenny’s own; an ominous sign. Every other emergency room visit she’d had with children was minor, with medical staff nonchalant. This time, nurses called ahead to expedite Sophie’s admission and wheeled her briskly. Automatic doors to the interior of the hospital whooshed open to welcome them unceremoniously into a new world of beeps, low voices, and antiseptic smells. A sympathetic nurse soothed Sophie with her preschool teacher voice while she inserted an IV. Soon after, the confident young doctor on call walked in. He looked Jenny in the eye and shook her hand.
“I’m Dr. Ku; start from the beginning. I understand you have quite a fever tonight, Sophie.” He gave Sophie a wink. Dr. Ku took notes, nodded occasionally, questions peppering the exchange as Jenny was finally able to release the timeline of each worrisome detail, no matter how minuscule. The internal pressure of the last months deflated a fraction with each word.
Dr. Ku lit Sophie’s chest X-ray from earlier in the day and pointed to a dark area. Sophie immediately popped up in her bed.
“Why is one of my lungs so much smaller than the other?” she asked.
Dr. Ku grinned. “Smart girl. You would be a great scientist. There is fluid on the right side but not on the left. You seem to have a severe case of pneumonia. We will admit you for IV antibiotics, and you may have to stay with us a day or two.”
Jenny felt relief; pneumonia was treatable, but a trace of anxiety lingered. The doctor left and Dave put his arm around Jenny and kissed her on the cheek.
“I’m going to go back home to get Ben and Simone into bed. Will you be alright staying with her?” Jenny nodded and Dave gave Sophie a big hug. “Hang in there, kiddo.”
Jenny and Sophie moved to a room on the pediatric floor with a spare bed; one for each of them. Jenny was bone-weary and felt unkempt. She called Dave and reassured him that all was well. As they began to snuggle down under the covers, a baby-faced resident who introduced himself as Joseph entered the room.
“We’d like to get a CT scan, just to make sure nothing else is going on.”
“Tomorrow?” Jenny asked.
Joseph shook his head. “It’s better to go ahead and get this done now.”
Alarm bells went off in Jenny’s head. Non-urgent tests were never done in the middle of the night. The orderly arrived and she was grateful to this stranger who made the journey down the stark hallway fun for Sophie by insisting they play Twenty Questions. In the CT room, Sophie somberly studied the heavy equipment as the technician prepared.
“Would you like to listen to music during the scan?” Sophie nodded at him almost imperceptibly.
“What kind of music do you like?” he asked fiddling with his iPod.
Sophie told him she loved the Beatles and soon, “We Can Work It Out” began twinkling above.
“What color is it, Soph?” Jenny was always curious about what her clever little musical synesthete could see. Jenny heard the beauty in music but could only imagine what it would be like to see it.
“Lemon yellow,” Sophie whispered.
After the scan, Jenny settled into bed, still in her clothes from that day. Her mind begged for rest, but pieces of a horrible puzzle were falling into place as Jenny weeded through her fearful thoughts. Each time Sophie coughed, Jenny’s anxiety spiked. She had told the night nurse she wanted to know the results as soon as they came back. Praying earnestly, Jenny became more desperate as the minutes passed, horrible possibilities swirling in her head. She knew the outcome would not change now but pleading with God was the last way to protect her child and Jenny did it with her usual determination. She drifted into an unsettled sleep; her body more tense than one at rest should be.
Jenny woke minutes later to the nurse whispering, “The doctor would like to see you.”
Uneasiness gripped her. Time slowed and Jenny watched her own feet following the nurse’s, wondering what she would learn and aware that this was not the way good news was delivered. Joseph, the resident, asked her to sit on a leatherette chair across from him in an empty waiting room. A checkerboard floor and fluorescent lighting contributed to the stark coldness of the moment.
Jenny couldn’t tell whether her heart or her head revolted first when she heard “bulky cancerous tumor.” Each word he spoke caused her heart to pound even more wildly out of control. He looked at her intently but fearfully, as if he had no idea how to handle the situation and wanted to get out of the room at the earliest possible moment. He didn’t know what kind of cancer. He didn’t know the prognosis. He only knew the oncologists who had the answers would be in at 8 a.m.
“Would you like to see the CT image?” he asked.
Jenny nodded, needing proof this wasn’t just a mistake made by a young doctor.
Jenny steadied herself and walked out of the room. She trailed Joseph into the dark, lonely hallway. He showed her the image on the computer screen at the nurse’s station and she winced as if punched. The monster in Sophie’s chest, right next to her heart, was immediately visible, and Jenny needed no medical training to discern its menacing dark shadow. Joseph retreated and Jenny’s panic overtook all rational thought. Collapsing on a lonely hallway gurney, the beeps of the hospital echoed in her head. Her shock drove her thoughts in erratic ways. She didn’t want to wake anyone because what could they do? Jenny sat in the empty corridor at 4 a.m., more alone than she’d ever been, with news too heavy to carry on her own. The clock seemed to tick in cut time. She tried to surf the web, searching for answers about cancerous tumors; answers a website could never give. When the desperation of the situation finally became too much, she called her sister and sobbed.
“He’s just a resident, it could be benign,” her sister reassured shocked and sleepy, but sensible. “Don’t get ahead of yourself. Without a biopsy, how can he know for sure? Wait for the oncologists before you panic.”
Jenny had committed to holding off to 6 a.m. to wake Dave. After all, one of them would need to be lucid to make decisions on this day dawning with a cruel new set of realities. The minute the clock ticked over, she called his cell. He didn’t answer. She called the home phone, worried she would wake Ben and Simone, but he answered immediately.
“Dave, you have to come back right now. They found a tumor. They said it’s cancer.”
Dave gasped. “What? What kind?”
“I don’t know,” Jenny said. “We have to wait for the oncologists to arrive.”
Jenny could hear Dave shuffling around saying, “I’ll get dressed and come now. Have you eaten anything? Can I bring you coffee? What time are the oncologists in?”
Jenny could barely register his questions and just told him to hurry. When Dave arrived after dropping the younger children to their neighbor’s house, she could see the redness in his eyes and imagined how the rising sun must have glistened on the tears running down his cheeks as his hands clenched the steering wheel.
Dave took over sitting with Sophie. He would know how to handle the doctors and make the decisions. She could let go instead of trying to stay strong in front of her baby who asked, “What’s wrong, mommy? Am I okay?”
She only nodded and said, “I’m just worried about you,” not wanting to alarm her daughter. How could Jenny tell her child she had cancer without knowing how to answer the harder questions to surely follow? Am I going to live, mommy? Will I lose my hair? Jenny quietly left Sophie’s room and sank onto the rough blue carpet of the empty family waiting room. Grief and fear anchored her on the floor. All of the tears Jenny had been holding back since Sophie had awoken now streamed down her face freely.
The same sun had risen only yesterday on such a different world for Jenny—a world of laundry and Brahms, reading logs and playdates. The concert so worrying to her yesterday was of no importance now. Jenny returned to the hallway outside Sophie’s room. She watched Dave stroke Sophie’s forehead through the window; his quiet Dad-strength reaching through the glass to calm her. Jenny pondered the events that had transpired and how little in life she could control. She couldn’t practice or will her way through this battle. But she would fight for Sophie with all her strength.
* * *
Dave gazed over at his daughter’s tiny frame buried under crisp white hospital sheets and blankets. The shock of the last two hours settled hard in his mind, and while he tried to convey calm, he felt unmoored. Jenny had been telling him for weeks that she thought something was wrong with Sophie. While his wife did have good instincts, she tended toward worst-case thinking, and he had dismissed her concerns. He never believed the worst case would find his family.
“Dad, why is Mom so weepy? She says she’s worried about me, but it’s scaring me. Won’t antibiotics make pneumonia go away?” Sophie looked at him with the inquisitive gaze that had melted his heart since she was a toddler.
“Don’t worry, sweetheart,” he said. He patted her on the arm, but his mind raced. As CEO of his company, he was used to manipulating bad news by presenting the unexpected in the best possible light to shareholders. He thought through the next steps logically, knowing they couldn’t tell Sophie anything until they confirmed the diagnosis and had some idea of the prognosis.
“How about some music?” Dave pulled out his iPhone and pulled up the Beatles-heavy playlist he’d made with Sophie just last month. They scrolled and found “And I Love Her,” and Sophie smiled. Dave felt affection and pain mix as he listened to the guitar strum the melody. The difference in circumstances from when they picked the song for her playlist one innocent month ago caused an ache in his chest that radiated outward. None of it seemed real, and nothing but Sophie mattered to him right now.
“I love this purple part here, Dad.” She closed her eyes but the cough that had plagued her for weeks interrupted the moment. Medication kept the fever under control, but her cough persisted.
Waiting for the oncologists to arrive was excruciating, but finally, the door opened to reveal the team that would ultimately give Dave the answers he so desperately needed to escape this suspended reality. They asked him to join them and Jenny in the parent lounge.
“I am Dr. Hansen, and this is Dr. May.” Dr. Hansen was in his early seventies with a grey mustache and kind eyes. Dr. May was much younger and she got straight to the point.
“We have reviewed Sophie’s scans and the history you gave us last night. We suspect she has some form of lymphoma, but only a biopsy can confirm the diagnosis. We are working on booking an operating room right now, and if we are lucky, we can schedule surgery this afternoon.”
Jenny crumpled with grief as they spoke while Dave filed each piece of information away for later analysis. How would they tell Sophie she needed surgery without telling her she had cancer?
As if reading his mind, Dr. Hansen said, “We are going to send in a child-life specialist who will work with Sophie and communicate that we need to take a small sample from her chest to figure out how to make her better. Like retrieving a key to unlock a puzzle. We know you will have lots of questions and we will be here to walk you through every step, but right now we need to put the wheels in motion to schedule necessary pre-op tests. We have to make sure Sophie can tolerate surgery today.”
As quickly as they had arrived after so many hours of waiting, the doctors left the room. Dave’s heart broke as Jenny’s tears flowed even faster down her face. He scooped her in his arms, and they were silent. Nothing could have prepared Dave for this. Grief and determination blanketed him as he braced himself to tell Sophie the news that would change her life forever.
* * *
Sophie sat in the hospital bed cross-legged, petting the silky fur of the therapy dog who had just stopped in to visit. It was her favorite part of the day in this new hospital existence along with the endless visits from friends, more gifts than she could stack in her room, and Mom allowing her to watch as much Netflix as she wanted. The worst part of this new life was how everyone looked at her like she was made of glass and might shatter at any second.
She hated how much Mom cried now. Being sent away from class by Madame while Brendan and Caroline laughed seemed like a lifetime ago, but it had only been twelve days; almost two weeks in a hospital bed with countless needle pokes, endless doctors and nurses streaming in and out of her room, and two surgeries. She was the proud new owner of a port-a-cath, inserted in her chest just this morning. It would supposedly make it easier to deliver chemo. She wasn’t convinced anything about chemo would be easy.
Sophie couldn’t remember her Dad telling her she had cancer. According to the nurses, he had given the most heartfelt speech any Dad had ever given, bringing them all to tears. They said that usually doctors delivered the news, but she was lucky her Dad was brave enough to tell her himself.
What Sophie did remember is the moment she found out she would lose the long, caramel-colored hair she had been growing out for years. She remembered the stillness of the room when additional tests revealed she had stage IV “gray-zone” lymphoma, some weird combination of cancers that had spread from her neck to her lungs, liver, spleen, and bone marrow. This was the exact minute she had turned to glass in everyone’s eyes.
“Am I going to die?” It was, of course, the biggest question, but she’d asked it only after inquiring about her hair.
“We are very optimistic that you will beat this, Sophie. Your chances of living are better than your chances of dying. Let’s focus on that.” Dr. Hansen was her favorite. He treated her like an adult and even gave her a list of the five chemo drugs she would receive so she could read about the side effects for herself. Mom had not wanted her to see the details, but Dr. Hansen prevailed, telling Mom that the more Sophie knew, the better she would be able to handle the treatment.
Chemo started tomorrow. Sophie was scared, but she tried not to let on. It was easier that way. If she cried or worried out loud, Mom would dissolve into tears and Dad would start a pep talk.
“Hey, sweetheart, how are you feeling?” Dad walked in with the Frappuccino she’d requested. Another perk of cancer life—endless Frappuccinos that Mom would never have approved in the old life.
“Fine, thanks, Dad,” she responded casually.
“Wanna listen to our playlist?” Dad asked.
“Sounds good, Dad.”
He started scrolling, and they settled on “Yesterday.” She stretched out on the bed and doodled in one of the numerous coloring books she’d been gifted in the last two weeks. The melancholy tune was somehow comforting and, yet, a little too relevant at the same time.
“Yesterday, all my troubles seemed so far away…” As the periwinkle blue melody sparkled in Sophie’s head, she saw a tear slip from Dad’s eye, and she knew she had to beat this. She pictured her school and her siblings, Mom playing her violin, and Dad sitting on the couch watching golf. Sophie’s heart ached realizing how much she loved yesterday, and she resolved in her heart to fight for tomorrow.
Susan Gillis Yarad is a native Texan living in New Jersey with her Aussie husband, three kids, two dogs, and a tortoise. She holds bachelor’s and master’s degrees in violin performance and is an intrepid member of the 7 Continents Marathon Club. Susan is currently working on her first novel in Stanford University’s Online Certificate Program in Novel Writing and has a particular interest in the history of racial injustice in the South, as well as the stories of the many heroes who battle pediatric cancer. Visit her at susangillisyarad.com or instagram.com/susangillisyarad.
This work was first published in Lunch Ticket.
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