Our Broken Beautiful Shell

Dear Friends:

Just wanted to inform you of the incredible whirlwind of activity that we have been caught up in that last 36 hours. Unfortunately, my dear sister Shannon has slipped away from us in an altogether sudden and unexpected way.

She was diagnosed with esophageal cancer approximately 10 months ago and bravely pushed through her first round of treatment and surgery with flying colors. Her cancer was eradicated and her prognosis was good, especially for someone with her relative young age of 37. Post surgery and during her second round of treatment, her personality seemed to shift and her mighty spirit seemed to flag. She gradually became more melancholy, anxious and at times unable to make simple decisions. It seemed she was just really worn down. However, she made it through all her treatments, began a complex eating schedule with her new patched esophagus, began building her strength with short daily walks, and was on the road to recovery. Her blood counts and other tests revealed normal levels.

Last Saturday, approximately two months after her last treatment, my mother became concerned by Shannon’s lethargy, fever and trouble with memory loss in the afternoon. Shannon was taken to the local ER and admitted. She was also coughing up some blood. A GI assessment was planned for Monday but as the family was about to leave on Sunday night, Shannon had a seizure and was intubated. This prompted her helicopter ride up to Cleveland Clinic where she was admitted for a battery of tests. On Monday morning they lost Shannon’s pulse for about five minutes but were able to resuscitate her.

Olivia and I received word of Shannon’s “turn for the worse” on Monday morning. I was in the middle of a 17 mile run so I ran obliviously for over two hours while Olivia made frantic arrangements for a possible emergency trip out to Ohio. When I arrived home I called my Dad and we made made the decision to pack up the family and head out.

We arrived at Cleveland Clinic around 7:00 where family and some friends had congregated. It appeared that Shannon had some faint response in the morning on Monday, and was able to wiggle her toes in response to visitors. However, this response as well has her basic neurological function appeared to continue a rapid decline over the course of the day. She was never to regain consciousness after her after her initial seizure on Sunday night.

The doctors were scrambling for information but it was clear that the inter-cranial pressure in Shannon’s head was climbing to dangerous heights and was difficult to control. She also continued to experience periodic seizures, fever and swelling despite sedation and strong medication. Theories included some type of aggressive infection such as meningitis as well some type of trauma to the brain. Neither were ever confirmed although there was evidence of a “fatty embolism” or large blood clot in the brain. The origin of this clot remains a mystery.

I stayed overnight at the hospital with my brother Marty on Monday night. The rest of my family had been up most of the previous night so they tried to get some sleep at a nearby hospital. I checked in on Shannon periodically and about 3:00 in the morning, the fellow doctor on call continued to reiterate that everything they were trying to do to treat the “symptoms” was simply not working and that the underlying cause of Shannon’s condition remained outside of their grasp of knowledge, and therefore, untreatable. A second CAT scan that night further confirmed that there was continued, extensive swelling throughout Shannon’s brain and it was very clear that there was already extensive brain damage. It was time to begin making decisions regarding how aggressive they were going to continue treating Shannon.

As a family we agreed to begin backing off of the “medical care”. Mom, Dad, Marty and I gathered around Shannon for two hours from 4 to 6 in the morning – we sang, prayed, reminisced, cried and said goodbye. As the medications stopped, Shannon’s vitals, blood pressure and inter-cranial pressure reached critical levels and we felt that she had “spiritually passed”. All that remained of Shannon was her beating heart and a ventilator’s raspy breath.

A conference with the attending doctor at 11:00 a.m. confirmed that Shannon’s brain activity was likely gone and he felt she had passed some time during the night. The ventilator was removed around 12:00 and we said our final farewells to Shannon’s body around 12:30, her technical time of death.

Our sister Dawn was en-route from China and we picked her up later that night at 11:00 at Cleveland airport. She had missed being able to see Shannon by about 12 hours.

The suddenness and mystery surrounding Shannon’s death are terrifying and stunning. Sometimes it is hard to breathe. It is difficult to comprehend how the her 9 month struggle with cancer in her esophagus and apparent victory, was to end in a sudden whirlwind of neurological breakdown lasting only a few days. We had grown accustomed to and accepted her battle with cancer. But none of us could expect or be ready for this.

This is my first experience with this kind of loss. It is a deep, deep chasm of pain and darkness that feels unable to be crossed. I don’t know the way across, and I simply don’t want to do it. Yet it must be crossed – and we must cross without Shannon.