A Little Synopsis of the Plot so far

Our Plague Year

"We have shared the incommunicable experience of war. We felt, we still feel, the passion of life to its top. In our youths, our hearts were touched by fire."
        - Oliver Wendell Holmes, writing about his experience in the Civil War

We were that ideal American family, comfortably ensconced in the upper middle class. We were some of the few who when asked are you better off now than you were four years ago always answered “yes”. After thirty-two years of marriage my wife Sally and I were on the brink of shepherding three children through college and had been discussing empty nests and retirement. Then, last Christmas Eve 2010, our world unraveled in a single, long day.

It began with our son Orion, a senior at Swarthmore College majoring in physics. We saw little of him after he went to college because he did physics research each summer. He had a heavy class load, was writing his senior honors thesis and juggling the demands of a new girlfriend. He complained to us that he was tired. We shrugged and said of course you are. He saw the college physician who ruled out mononucleosis and he shrugged as well. Orion complained of occasional double vision and we suggested a new glasses prescription. He got a new pair from a Swarthmore optical shop and it was better.  His complaints grew a little more frequent as the fall wore on. Then it was time for winter break. I devised a special treat for his homecoming on the Monday before Christmas. I had bought tickets for the three of us to see Al Pacino in the Merchant of Venice on Broadway. The performance was powerful but Orion was listless. He was quiet, unenthusiastic over dinner. During the performance I looked at Orion’s face in profile and saw no emotion, no light in his eyes.

A few days later I took him to see our optometrist, Brian Wadman, in Amherst. We left our home in Ashfield at 8:30 am, assuming we would be back by noon. The exam wore on, longer than usual. Dr. Wadman looked concerned and performed a few more tests, his unease (and mine) growing. He sat down with us and said he saw papilledema, a swelling of the optic disk. He also saw an inability in Orion’s vision to see the periphery as well as a peculiar offset double vision. He strongly urged us to see a neurologist. We left his office for lunch and promised to return in an hour or so after Dr. Wadman consulted with a neurologist. When we returned everyone in the office had grave expressions. We were given Orion’s records and told to drive directly to Cooley-Dickinson’s emergency room for a CT scan.

CDH was expecting him and took him right in. I sat in the waiting room and fired off an email to my wife Sally describing what was happening. I then began researching brain masses, and brain cancers on the internet. All my fears suddenly were perched on my back. I was asked to come back into one of the examination rooms and two very serious doctors told us they found a four centimeter mass at the very center of Orion’s brain, sitting on the pineal gland. Four centimeters is the size of a large kiwi fruit. This mass had been growing and had blocked the circulation of cerebral fluid, increasing cranial pressure and causing the symptoms that had been plaguing Orion. They very carefully and honestly told us that this was extremely serious and we needed to go to Baystate quickly. They had already ordered an ambulance. By now Sally had left work, gone home to tend the dogs and wood stove. I called and she agreed to meet us at Baystate.

Baystate was a different world from CDH and Northampton. The emergency room was jammed with patients complaining of everything from hangnails to gunshots. There were people who seemed to be there for the warmth and others who were clearly dying. We went from Orion’s private room at CDH to a hallway, to a curtained berth where my elbow jabbed the back of another patient’s relative through the cloth. All through this Orion was quiet. A Baystate neurologist appeared and looking directly into our eyes told us that Orion’s condition was beyond their abilities. They too had an ambulance waiting outside for the hour and a half drive to Boston were they had already called in our case to Massachusetts General Hospital, MGH. One of the ambulance drivers told me it was my right to take the ride with them in the ambulance. I took that ride with a sinking heart. The EMT who rode in the back with us, Orion’s age, whistled as he looked over the chart and images. He shook his head and asked, “Are they really going to try to take this out?” Orion, on his back, eyes wide open, said nothing.

Reaching MGH in Boston at 11:30 PM, now fifteen hours after leaving home, we were whisked into acute care and were greeted by an entire team of neurologists. Orion was hooked to monitors as one of the neurologists told us that it made no sense that he was not already in a coma. She opined that Orion must have the most adaptable brain they had ever seen. Each neurologist took a turn quizzing Orion about his symptoms and his academic career. They asked him little mental questions about the date, place, etc. When he answered these they went on to ask him who the Speaker of the House was, to explain the Pythagorean theorem, to expound upon current quantum theory. He was a savant, performing for his kind.

Then they found the symptom that thrilled them, Parinaud's Syndrome. This is a paralysis of upward gaze, an inability to move one’s eyes caused by injury to the midbrain. Few doctors ever see this and word spread quickly at MGH. A steady stream of young doctors began coming in to learn. At one point we were left alone with one of the neurosurgeons who told us breathlessly that she would not even wait for another MRI, she would do brain surgery immediately. I began to understand how much trouble Orion was in.

By now, long after midnight, Sally had arranged for dog-walkers and house-sitters and was on her way to Boston to join us. By dawn Orion was in an MRI scanner and the neurosurgeons told us to expect surgery later that day. A young neurosurgeon introduced himself to us as the one who would operate on Orion with the goal of relieving the intracranial pressure and obtaining a sample of the mass. Sally asked if he was experienced with this procedure called an endoscopic third ventriculostomy. He replied that he had done more than anyone else at MGH that year. Sally asked, “how many is that?” “Three”. This would be his fourth. We leaned into each other’s shoulders.

A few hours later we were all in scrubs watching equipment being taken into the operating room. Two surgeons, two anesthesiologists, two nurses. The team began going over the procedure. Orion’s neurosurgeon came out and I asked him if he was feeling fine. “Yes”. “Well rested?” “Yes”. “Hold your hands out for me” I asked. Dr. Williams hands were rock steady. The operation consisted of drilling two holes into Orion’s skull and inserting two devices, an endoscopic camera with lights and another tool to cut and collect tissue. Down between the lobes of his brain they went to the third ventricle, a reservoir of fluid that is connected to three other ventricles designed to cushion the brain, decrease pressure on the lower brain and to distribute the cerebral fluid evenly through channels. One of these fluid canals, the Aqueduct of Sylvius, had been blocked by the growing tumor. Punching through the floor of the third ventricle allowed the fluid to flow again. There, underneath Orion’s brain lay the cancerous mass. Dr. Williams scooped out a sample of cells for biopsy and backed his way out. The tumor was inoperable.

Four hours later we were sent up the neurosurgical intensive care unit, the same NICU that treated Senator Ted Kennedy. A handful of rooms, each patient with his own critical care nurse lay before us. Flashing alarms and warning texts were displayed from ceiling monitors. Every patient was constantly going out of normal range. The noises were confusing and terrible. Orion looked awful. He was propped up in his bed, an enormous bandage draped over his half shaven skull. On either side of his head two cylinders were hung, filled with a grotesque pink liquid, his brain fluids, tinged with blood. These two tubes were handling the excess fluid pressure that had built up and led to two small tubes that snaked their way into two tiny drain holes in his head, the extra-ventricular drains, EVD. The goal was to adjust these drains slowly and patiently to relieve the pressure and the brain compression in a controlled fashion over days.

Each hour his nurse would run him through a little neurological test of questions and physical tasks. Twenty-four hours a day for eight days. His surgeon came in and asked if Orion knew where he was and what was going to happen. Orion replied that he was at MGH in Boston and was scheduled for brain surgery. He was confused to be told that it was done, but then smiled in pleasure. That first day ended what we would call the forty hour day. The cranial pressure relieved and equalized, he was released after eight days. We received a room and board bill for one hundred and twenty-one thousand dollars. The surgery bill to follow was another twenty-thousand dollars. Better be in the upper middle class with great insurance if you get sick.

I began a blog about our experience, needing to decompress myself and try to make sense out of what was happening to Orion and to our family. Each attempt to talk to my mother and siblings resulted in my crying and gasping for air and grasping for words. I spent too much time trying to stay ahead of what the doctors were telling us and not telling us. My fears grew exponentially as I read the grim statistics on brain cancers. My worst fears had come to pass. Down in the hospital’s cafeteria I ran into Orion’s surgeon who beamed and said, “I have some good news!” The biopsy had come back as the most treatable of brain cancers, a pure germinoma. This cancer, born of primitive germ cells present during the embryonic stage of human development, was a genetic mistake, a few cells migrating, undifferentiated and moving up instead of down, north instead of south. Wanderers, nomads lost and without purpose.

A few days later and the news turned bad with the return of tests confirming a much worse diagnosis of a non-germinomatous germcell cranial tumor, an NGCCT. Two protein markers hCG (Human chorionic gonadotropin) and AFP (alpha-fetoprotein) had been detected in Orion’s spinal fluid. We were told things were very serious with survival rates at fifty-fifty. The MGH doctors outlined a possible treatment course of very aggressive chemotherapy followed by radiation. They strongly urged us to head down to New York and have a second opinion with one of the leading experts on NGCCT. Sally and I believe in and trust science and so headed down to NYC, just four weeks after that terrible forty hour day and Orion’s surgery.


 At the Langone Medical Center of NYU we were met by Dr. Allen. He smiled, completely at ease with the tour he was about to give us. Slice by slice he moved through the MRI images as we descended through Orion’s brain. Dr. Allen described and identified the parts of the brain as we travelled. Reaching bottom, now having seen the entire battlefield, he showed us the pineal gland, the hypothalamus, the pituitary and the terrible tumor mass, squatting on the midbrain. Lifting through the layers he showed us that the tumor was cancerous, composed of a few different types of cancer and, worse yet, it was disseminated, spreading through the brain by way of those ventricles.

He swiveled in his chair and looked at the three of us and said, “this is very bad but you can beat it. You must be strong, relentless and give no quarter or comfort to these enemies. You will be damaged at the end but you will be alive. You will be the victor”. Sally asked for the effects of the terrible chemicals and radiation if he lived. Dr. Allen smiled again and said, “infertility, deafness, secondary cancers, hair loss and cognitive loss”. Sally stopped him there and said “his brain is his best feature” and Allen replied, “He will still be smarter than 90% of the country and be alive. I’d take it.”

It was time to face the fact that our lives had changed forever. We called Swarthmore College to withdraw for the semester and incredibly they said no. They said forget the spring bill of $23,000. Then they found a professor who was willing to tutor Orion online via email to get him through the final credit he needed for graduation. We arranged for a hotel room a short shuttle ride from the hospital. He had a medical port implanted in his chest to make it easy to withdraw blood for the many tests ahead and to inject the terrible chemotherapy drugs. By mid-January, fewer than four weeks after his diagnosis, Orion was admitted to pediatrics on the eighteenth floor of the Ellison Building at MGH. His solid, metastasized brain tumor was best treated by a pediatric oncologist with the most experience, Dr. David Ebb, who graciously agreed to work with him.

We now began five months of chemical warfare. Six cycles of deadly chemicals, some of them derived from mustard gases. After each 4-5 days of chemical intravenous chemotherapy he got two weeks to recover before the next onslaught. These chemicals targeted not just the cancerous cells but any cell that reproduced quickly. That includes hair of course but also the lining of your bladder and stomach. His blood counts dove toward zero, dangerously depleting his body’s immune system. He became weak and tired. The premise of chemotherapy is to kill the cancer cells just before the chemicals kill you. Modern medicine, through reviewing thousands of patient data had developed protocols for the amount of chemical substance, the rate delivered, the time of day and the effects of multiple drugs with each other. Problems caused by the drugs were addressed with other drugs, each of those also causing problems. Orion’s cancer was so rare the number of cases studied were in the dozens, not thousands. The doctors felt in the dark.

Orion and I moved to Boston after I found a condo that I could lease on Beacon Hill, five minutes from the hospital. Sally remained in the Valley, maintaining her job with its all important health insurance and managing our home and her 95 year old father. Our family had reached a breaking point. We were thin, brittle, tired and despondent. Orion’s task was to weather this harsh treatment, mine was to protect him. I was his bodyguard, his gatekeeper, and his advisor. He would later describe me as his roommate, nurse, chef, personal trainer, secretary, biographer, chauffeur, and friend.

When Orion was bed ridden, tubes hanging from him, I sat in his room. When he was home in the condo, I cooked and tried getting him out for walks. The days were long and the calendar felt like a weight on our shoulders. We had to bear the burden and the blessings of time. After the second cycle of drugs Orion was given another MRI and a blood test to search for the protein markers produced by his cancers, AFP  and hCG. His oncologist, Dr. Ebb warned us to expect the worst. We sat in his office and watched the doctor access Orion’s digital records, bringing up the fresh image from the evening before. Ebb sat there staring at the screen for a minute before suddenly exclaiming “It’s gone, it’s completely gone!”.

So we had turned a corner and now were filled with a new hope for the first time in a month of horror. The cancer tumor, malignant, had apparently been destroyed by these awful chemicals. The tumor seems mostly to have been composed of primitive germ cells, which wandered off track in the first few days of Orion's fetal development. These germ cells are "exquisitely" sensitive to chemo and radiation. So far so good. What little is known of Orion's rare species of cancers is that the full six cycles of chemo must be given and the full radiation course must follow. A single cell can escape, wounded from these first washes of carboplatin, etoposide and iphosfamide and return years later, its vows of mayhem renewed.

The long campaign continued, the doctor measuring and watching his blood cells. After each cycle I had to give Orion an injection of a drug called Neulasta, designed to kick-start the bone marrow into producing neutrophils, a kind of white blood cell that are the first responders of the body’s immune system. The doctors asked if I had ever given an injection before and I said, “sure, to goats”. Orion began to be able to feel his blood counts dropping and, after the Neulasta started its work, feel them coming back up. Always in front of us was Orion’s graduation from Swarthmore. I reminded the doctor of this date frequently, thinking that this graduation might be the last full measure of Orion’s dedication to learning. 


All through the spring the calendar held, the schedules met. Two weeks before Swarthmore Commencement, the chemical onslaught finished giving him two weeks to recover. He did even better than that, the doctor releasing him one week early so that he could enjoy senior week at the college with his friends. We drove him down and delivered him into the arms of his girlfriend who told us “go have a vacation. I’ll take it from here; see you in a week.”

The week passed and we found ourselves at Commencement with many hundreds of other families. Our eyes easily found Orion’s bald head in the sea of candidates. He sought us out too and I saw him smile directly into my camera lens frequently throughout the two days of ceremonies. This victory could be savored for just a few days before Orion began thirty days of radiation therapy under the nozzle of the giant cyclotron that delivered protons traveling at sixty percent of the speed of light into Orion’s brain. For these thirty days we had elected to stay home in Northampton and gave up our Beacon Hill lease, preferring the routines of a daily commute into Boston.

Protons are the nuclei of atoms, much more massive than the photons used in traditional radiation therapy. The theory is that such heavy particles can deliver more energy into breaking the cancer cell’s DNA with less damage to surrounding tissue. The problem lies in the cost of such a machine. In the case of the cyclotron at MGH, two-hundred and fifty-million dollars has been spent. Thirty-seven proton centers exist worldwide, ten of them in the United States.

Detailed three dimensional maps were constructed of Orion’s brain and tumor locations and depth. The proton beam was shaped using a heavy brass mask and a Lucite filters to deliver maximum energy to the cancer cells and to avoid striking healthy tissue. His head was tattooed with alignment dots and his head was fitted with a rigid mask to hold his head in place. Each treatment took just ten to thirty minutes each day after our two hour drive into Boston. As the days wore on we developed a wonderful, well oiled drive of Orion helping me with navigation and hair-raising decisions on entering and exiting congested traffic and parking. It was our work day. I thought of a few lines from W.H. Auden: “He was my north, my south, my east and west, My working week and my Sunday rest, My noon, my midnight, my talk, my song.”

I am a little uncomfortable about the whole cancer as war analogy, but what fits this struggle better? Cancer is dreaded for good reason. Our own bodies changed, metamorphosed into an enemy within, one that knows our weaknesses and our strengths. At the Burr Proton Therapy Treatment Center in the basement of the Yawkey building at MGH all the patients were using the giant cyclotron but their cancers were all different. As I sat each day waiting for Orion to finish his time under the gun I observed the other patients and the staff. As a naturalist, observation is all. I saw patients get slowly worse, each day a little weaker. Eventually they stopped showing up for their appointments and others would take their place on these front lines.

By the end of July, Orion was done with cancer treatments. A farewell MRI and blood test showed no evidence of disease. Incredibly, he was pronounced free to go to a new life as a PhD student at the University of Michigan. He was told that he must have an MRI in three months and then three more in the next year, two the following, and then one every year for the rest of his life. His nurse was in tears as we said goodbye. His doctors gave him their personal cell numbers with the admonition to call anytime with any problems. They wanted a success in a war that has had so many casualties.

Two weeks later and we were driving him to Ann Arbor. Two days later and we were saying goodbye to him eight months to the day from his terrible trip through the halls and rooms of three hospital emergency rooms. Now another month has passed and we content ourselves with seeing and hearing him through video chats and his posts on Facebook.

 We hold our breaths and steel our nerves for a future that holds little certainty.


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