It was unlike anything I’d experienced before. Sure, there had been a few other moments of intuition in my life that had proven somewhat premonitory. During my OB/GYN training junior residents came to understand that if Tyson suddenly wanted to simulate a ruptured ectopic or shoulder dystocia, you’d best pay attention because it was likely moments before one rolled in through the ER or labor ward. My ability to “gut out” what a call night or surgery or delivery would be like became the stuff of legends. Well, not really. But more than a few times it served our training team – and thus our patients –well that I could sense trouble brewing before it presented itself.

So it was deeply disturbing to me that, on the night of Thursday March 6, 2014, it struck again. But with unparalleled intensity.

It was bedtime. Olivia had been tucked in first, exhausted after returning to a full day of school post-snowstorm. Snuggles, kisses, bedtime stories, prayers. Routine. Callen was next. Snuggles, kisses, bedtime stories, prayers. And then without warning, it happened. A feeling deep in my chest. Squeezing. Gripping. Cold. Intense. Horrific. I couldn’t draw a breath. As I lay there next to him, I knew: something was terribly wrong with my son.

I walked downstairs, every hair on my body electrified but the rest of me strangely numb. I said nothing. I couldn’t. Not yet. What would I say, anyway? I got ready for bed. Watched a show. And finally, out of nowhere, I blurted it out. “I think Callen has leukemia.” Jim’s retort was a sleepy “That’s Eff-ing crazy.”

It was crazy. It had to be! I had to be! There hadn’t been a single fever. Or bruise. He’d had no unusual bleeding. He seemed no more tired than the average 4 year old after a day of preschool. And that was it. That was all I knew about leukemia, save a few esoteric facts that had served me well on tests in medical school. Where had this notion come from?

The next morning at work I told one of my partners. She had been a resident two years my junior, meaning we had spent two years of training together. I told her about my experience. She stopped. Looked at me, wide-eyed. Said she didn’t like it when I had “those feelings.” We reminisced about some of our shared experiences with “those feelings.”

I admitted to her that he’d had some joint pain. Three different episodes spanning six weeks. Three different joints. A hip, an elbow, a shoulder. He'd had a brief cold prior to the hip pain so it was probably just a post-viral toxic synovitis. Our nephew had had the same. But it was Friday morning and we were leaving in a few hours for a long-awaited weekend away in a remote Virginia cabin. It had been a gift to us some 15 months prior, and we were finally going to relax and regroup. I’d call the pediatrician Monday. Just to check in. Just to be sure there wasn’t anything to be concerned about. Because there wasn’t. Just growing pains. And a growing pain in my gut.

Saturday, March 8th was beautiful – clear blue skies, calm winds, newly-fallen snow. A perfect day for skiing. We left our cabin in the remote Shenandoah and headed for the mountaintop of Wintergreen. The kids had ski school. We had a day of fresh powder to enjoy. A little shy of 4 o’clock we stopped to watch the end of their lessons. Olivia had made it onto the mountain, using the ski lift for the first time. She’d been promoted and was proud as could be! Callen was taking the magic carpet up to the top of the bunny hill. I took a video. One arm hung at his side. He smiled and waved with the other. On his Ski School report card his instructor wrote “Awesome Attitude!”

We got cleaned up and went to dinner. Nothing like a full day on the slopes to work up an appetite. Except that Callen wasn’t hungry. Surely just overly tired from the strenuous day.

Back at the cabin we readied everyone for bed. Olivia and Callen fought over who would sleep where on the overstuffed couch. There were negotiations. There were cries of foul play and feet touching where they didn’t belong and pillow stealing. Uncle Buck was playing in the background. And there were stinkbugs. I remember the stinkbugs. But then sleep came and, thankfully, there was nothing.

Jim woke me just before midnight. Callen was febrile. In rigors. Delirious. He had called out in his sleep. I was oblivious, having shoved earplugs into my ears, the rustling of stinkbugs behind the blinds too much for my comfort.

We packed up in an absolute frenzy. To hell with the security deposit. We secured the children and our belongings and left the cabin to the bugs. We had no cell phone service. We stopped for gas. We purchased pink chewable Tylenol tablets and gave him two. Despicable Me played in the DVD, the song “Happy” breaking the mood in a way we could not. The kids fell back asleep. We drove through Daylight Savings, watching the clock change directly from 1:59 to 3:00a.m. Somehow that still managed to be the longest hour of our lives.

We pulled into our driveway a bit shy of 4 a.m. It was now Sunday the 9th. We tucked Olivia into bed. Put Callen into his. I sat there, unable to leave his side. Jim paced nearby, cell phone in hand. We knew it was time to call the pediatrician. We waited until 6, being insensibly sensible about what time was appropriate to page an on-call doctor.

She listened to Jim’s brief recapping of events. I recall him saying “I’m worried about what you’re worried about.” She offered to meet us at her office, but said that we needed the ER. We needed all diagnostic resources at our disposal.

We took off for the hospital, leaving Olivia alone with a babysitter she’d only just met. We checked into the ER. Told the story for a second time. We said the word “leukemia”. We wanted them to not be afraid to say it. The elephant was in the room, and it was a small enough room that it deserved acknowledgement. By this point Callen was comfortable. Afebrile. The picture of cherubic health. His vital signs were normal. His labs were normal. Normal white cell count. Normal red cell count. Well, there was that one interesting cell on his peripheral blood smear, but they had called the pediatric oncologist. It was nothing to worry about. We were given discharge instructions and follow-up appointments. Rheumatology was expecting us Monday, oncology would see us Thursday. We were all set, and home we went.

The rest of the day passed. I don’t remember how. I don’t remember Jim and I talking much about the elephant or anything else for that matter. I sent an email to my partners letting them know that Callen was sick and that I’d be taking Monday off to be with him.

March 10th. At noon, as directed, we showed up at the rheumatologist’s office. It was completely empty. He’d agreed to see us on his lunch hour as he was leaving the country later that week. Jim met us there. We filled out forms and were escorted to the exam room. We were nervous but optimistic. Jim’s family history was riddled with autoimmune disease. Juvenile rheumatoid arthritis seemed the likely culprit. We told Callen’s story for the third time. The doctor asked if there had been any more fevers. We said no. The nurse came in and took his vitals. His temperature was 102.1F. We were instructed to purchase a thermometer.

Callen was thoroughly examined. His left shoulder was tender with a restricted range of motion. He cried out upon manipulation of the joint. The presumptive diagnosis was a post-viral arthralgia. “At least it’s not leukemia,” he stated. “No way he’s had leukemia for six weeks with these labs.” We were given instructions and a two-week follow up appointment. The doctor assured us we wouldn’t even need it, that we’d be sending him an email within a week to cancel the follow-up because he would be fine by then.

Jim went back to work. I went back home with Callen - relieved, and yet not. I checked in with our pediatrician by phone. We made a plan. I checked in with my office and agreed to work the next morning.

March 11th. I had recently adjusted my office template to allow for more time at home. Tuesday was one of my short days. Five hours. Maybe thirty patients. I could do that much. Or so I thought. I was distracted. Inattentive. Unfocused. Panic simmered in my gut. At 1 o’clock I found the office manager. I needed to leave. While I was speaking with her, I missed a call from home. I listened to the message. Callen was screaming in pain. He had another fever. Come home. Now. Please. Simultaneously, Jim was calling me. Our house was still under construction. The contractor, who was a family friend and had known Callen since birth, had called his wife – who happened to be Jim’s nurse. Someone had to come home. Now. Please. Something was horribly wrong with Callen.

I arrived home to find him writhing in pain. Screaming uncontrollably. “Make it stop, Mommy.” Again and again he pleaded. Again and again I promised I would.

I called our pediatrician from the car. I was heading for the ER. She would meet us there after office hours. Callen fell asleep on the short ride. He awoke in the waiting room and resumed his thrashing and screaming. My medical assistant brought me my cell phone charger. She stayed until Jim arrived. I don’t remember her slipping out, but I do remember her being there. A quiet strength. Solidarity.

Labs. X-rays. His white count was still normal. He was now anemic, and his platelets were falling. The ER physician found us. She said that it was “beginning to look more hematologic”. I curled up around my son and broke down.

It was time to call my father. I couldn’t do that there. I went upstairs to Labor and Delivery. It was a safe territory. My turf. What happened there made sense. I needed that place and those people. I snuck into labor room 11 and began to sob. Sobbing turned to wailing. The first person entered my room. The unit secretary. She heard my noise said that she knew it all too well: her mother had just been diagnosed with cancer and, upon hearing the news, the same sound had escaped from someplace deep within her. She put her arms around me. The first nurse entered the room, and then another. Spontaneous prayers began. The first doctor entered. She continued the prayers. The words “I think my son has cancer” came out of me for the second time. Broken. Stuttered. Disrupted by heaving sobs. We stayed like that, huddled together, until I gathered the strength to call my dad.

I rejoined Jim and Callen in the ER. We were admitted to the pediatric floor late in the evening. The census was high and all rooms were full. We were put in an old storage room. No windows. No sense of time. Callen had no IV, just multiple blown veins from the ER. He was in excruciating pain. We were in a different kind of agony. The parade of specialists began. Rheumatology came back. He felt this was no longer his territory. Infectious disease came. She ordered a slew of labs, but didn’t expect to find anything. The pediatric oncologist strode into the room. Confident. Hand outstretched. He introduced himself. Stated he was the member of the team parents never wanted to meet. But that we would not need his services. This was not leukemia. Leukemia didn’t have migratory joint pains. Leukemia didn’t have a normal white count. This was not cancer.

Callen needed morphine. There were many more attempts at an IV. He called it “the poof”, a special delivery system of a topical anesthetic designed to numb the skin prior to attempting an IV. It made a quiet plosive sound upon deploying. He hated “the poof”. “No more poof!” He pleaded. But they needed blood. And he needed drugs. The list of labs was extensive. His blood counts were falling precipitously. Each blood draw required 25cc of his precious liquid, tubes of every color lined up in hopes that one of them would yield the answer. I held him down. Time and again I restrained his heaving body. He yelled at me to stop. I did it anyway.

It was now the 12th and we lacked a definitive answer. The labs were evolving into a pattern consistent with a rare disease. Macrophage Activation Syndrome (MAS). It wasn't leukemia, but as Jim said, it was “no picnic”. Callen was in so much pain he could no longer walk. He could not so much as stand on his own without being medicated. We carried him place to place. He had not eaten since that Saturday afternoon. Rheumatology was back in the picture. This was going to be his territory after all. He came late in the afternoon. Our pediatrician was visiting. My father was, too. She sat in the corner chair. He stood. We all listened to the hypothesis and the rather convincing evidence supporting it. We were all getting schooled in something none of us had ever heard of. But at least it wasn’t leukemia.

A room opened up on the other side of the hall. We were moved there Wednesday afternoon. It had windows and a little more space. Olivia, Matt and Julia came to visit Callen. We reassured them. We reassured ourselves. We played cards. Decorated his room with pictures and balloons from his preschool classmates. Updated family members. Instructed them not to look up MAS on the internet: we had perused the medical literature. It was not pretty. We had googled it. It was even worse. They looked it up anyway. Still, it was not leukemia and that was everybody’s bottom line.

Prior to initiating treatment for MAS, it was required that Callen have a bone marrow biopsy. To treat him empirically for MAS without giving leukemia a final thought could have potentially devastating consequences. The likelhood that this was MAS was quoted as 99%. We gave our consent. We fought for a central line. He was going to need blood. His daily blood draws were torture. He was being put to sleep for one thing. Do it all. There was push back. We pushed harder. His nurse advocated on our behalf. He was scheduled for his central line.

That night there was a double rainbow outside his window. We took it as a sign, took a picture and sent it to everyone. An omen for sure.

Evening came. I made a bed on the floor. It had been 5 days without sleep. I told Callen’s nurse I was going to take a sleeping pill and asked that she be extra vigilant. Before falling asleep, I sent a text to my dearest friend. I told her I was sure my son had cancer.

Morning came. He was taken downstairs for his central line. We were consented. People felt awkward consenting two physicians for his procedures. Thankfully, they did it anyway. There were a lot of “as you already knows” and “I’m sorry guys”. We waited. We wandered. He was transported from interventional radiology up to the PICU for his biopsy. Most of the staff caring for my son were known to me. Patients as well as colleagues. I had delivered their babies, yet it was I who felt naked and exposed in their presence.

He went to sleep. It took a long time. When the oncologist came to get us in the waiting room, he said, “We’re all done. Things mostly went well.” All I heard was “mostly”.

We joined Callen in recovery. He was sleeping for the first time in 5 days. He looked so peaceful. Still. No evidence of pain on his face. It was the first time he had looked like himself in nearly a week.

My wonderfully goofy partners came to the PICU. They came to cheer us on. To reassure us. They brought food and distractions and beer. We had some laughs, shared some hugs and tears, and parted ways. Our pastor came by. Prayed with us and over Callen. Blessed him and made the sign of the cross on his forehead.

Callen was sent back to his room, still comfortable from the anesthesia and morphine. It was early afternoon. I made a run to Target to get him some supplies. Jim stayed by his side. He texted me at 2:35 pm. The oncologist had results. He would be coming by to meet with us shortly.

I bolted from Target. Ran through the hospital parking lot. Climbed the stairwell. Was buzzed into the unit. I passed the oncologist on the way in: he sat at the computer flanked by nurses. No one looked up. I took a seat in the chair with Jim. And we waited.

He entered the room and took a seat in front of us. There was no idle chitchat. He simply began. “I’m sorry. I was wrong. It’s leukemia.”

Silence. Stillness.

I spoke first. Told him he had tipped his hand. He asked in what way? It was the word “mostly”. He said that hadn’t been intentional, but admitted that the procedure had indeed been very difficult. It had taken more than one attempt. He had a hard time drawing back for the aspirate. The cells were sticky. Clumped. Not normal. And so he had known. Everyone in that room who so tenderly recovered our son (and his parents) from his procedure had already known.

He spoke of transfer to another hospital. It was unclear whether the transfer would take place that evening or the next day. We were clear: it would take place that day. To push it to a Friday meant pushing the start of chemotherapy to a Monday. He stated that in the grand scheme of things, beginning treatment on a Friday versus a Monday would not change a thing. We assured him that, on the contrary, it would change everything. For us. He quietly rose and left us there. Shattered.

Jim and I sat alone in the room with Callen. A complete abruption of our lives had just occurred. A shearing away of everything we knew. We held hands. Pledged our love. Whispered promises that we would see our family through all that was ahead. We would not fail them. We would not fail each other.

We now knew what we were dealing with. Or at least we could call it by name. But in that moment it was still little more to us than a word. There was so much that we did not know. That we could not yet know. But it would come. Day by day and night by night. What love entailed. What agony felt like. What anguish sounded like. What the face of courage looked like. What fear smelled like. What sacrifice truly meant. We would understand weariness. Experience fury. Receive mercy. Taste humility. Be both brutalized and refreshed by frank honesty. Witness incredible acts of humanity. There would be suffering too great to fathom, and simple joys would become all the sweeter because of it. Resilience would become a way of life.

A year later we are experienced enough that we dare not say the worst is behind us. Yet we do not consider ourselves naïve when we hope that it could somehow be true. We'd be lying if we said that this anniversary felt more celebratory than daunting. For while there are 365 days of treatment behind us, there remain 832 before us. We have done our best to honor those promises made in a moment of panic. We are still standing. Not always so tall – oft times it’s from a position on our knees. Not always so strong – we are unquestionably softer around our edges, and around our midsections, too. We are far more careful than carefree. Deliberate by necessity. Continuously in recoil from hearing a line in a movie, finding a pink chewable Tylenol deep within the minivan console, seeing a stinkbug, hearing a song on the radio - echoes and reverberations of a not-too-distant past that are still very much a part of our present. But as sure as I was that March night that something was terribly wrong, I say this today – with a degree of certainty and a strength of conviction profoundly stronger than any experienced to date: Everything is going to turn out okay in the end.

Happy New Year.