We attempted radiation therapy, but to no avail. Jim became weak—and, to my great chagrin now, less argumentative. I saw Jim and Sally frequently to offer them support, but there was little else I could provide. He was deteriorating badly.
Sally decided they needed a break, and on a whim booked them on a trip to Cephalonia, an island in the Ionian Sea just west of the Greek mainland. When they returned from their holiday, they came to the office and both looked much improved! Sally asked me to examine Jim’s chest—I could find no evidence of the tumor. When they saw my dumbfounded expression, they both laughed and told me this story. As I rewrite it now, I still find it all very hard to fathom.
It seems they visited a monastery on the island, of no special significance to Jim and Sally other than it was another attraction mentioned in their tour book. They were somewhat flummoxed when an old nun came up to Jim and asked him what his illness was. Sally, who wasn’t sure why the nun had singled Jim out, wasn’t anxious for a religious discussion or solicitation. She responded only that Jim had cancer. The nun didn’t confront or engage with any of the other tourists. Shortly afterward, apparently summoned by the nun, a priest introduced himself and asked Jim to go down into a cave where a holy man used to live. Jim was too weak to negotiate the steep, narrow steps. So the priest took Jim and Sally into the church instead. The priest opened what seemed like (and, according to Sally, smelled like) a sarcophagus. Sally said they were then led through a “confused business of kissing of old rags, sprinkling of water, and mumbling,” and then sometime later they found themselves outside again.
The priest again invited Jim into the cave. This time, Jim was shocked to find he could go down the steep steps and climb back up again without a problem. Since that day at the monastery, Jim has gotten stronger and healthier each day. He now stood in my clinic, astonished at his own recovery. I was speechless, but Sally pressed me for my thoughts. As I wrote in the BMJ article, “I took refuge in my role as a clinical scientist, talking about things like the body’s remarkable and unpredictable powers, spontaneous remission, the delayed effects of therapy, and the benefits of a well-timed holiday.” Truth be told, to this day, I still don’t know what to make of Jim’s recovery. Perhaps he would someday relapse, but isn’t the experience of this extraordinary remission miraculous in and of itself? Isn’t whatever time they gained by this remission a true gift?
I asked the couple for their thoughts. Sally wanted to scoff it off as a freak coincidence, but could not quite bring herself to deny the undeniable: her husband was recovering, and dramatically so. Each day better than the one before. Jim could only say he was “gobsmacked,” or utterly astounded by this unlikely turn of events.
And so it was that one day a couple without religious faith visited a monastery. Now they and their atheist doctor had to face the question: If not this, what is a miracle?
To read the British Medical Journal article where I first described this patient, see: BMJ. 2002 Sep 7; 325(7363): 553.
Editor’s note: Many thanks to my resourceful editor at HCI books, Christine Belleris, who tracked down the holy man referenced in this story. He was Saint Gerasimus, “the New Ascetic of Cephalonia.” During the sixteenth century, after studying and serving the Church for years in Jerusalem and elsewhere in the Middle East, he was ordained a deacon and then a priest. He lived an ascetic life, with long periods of solitude. He then traveled to the island of Cephalonia, where he lived in a cave. He founded a women’s monastery there, where he lived for thirty years. Legend has it that for his life of worship, servitude, and self-deprivation, he was given the miraculous gift of healing. (http://oca.org/saints
/lives/2015/10/20/103007-venerable-gerasimus-the-new-ascetic-of-cephalonia)
Date of event: Winter 1979
The Whoosh of the Ventilator
Mary Anne Jackson, MD
As a second-year pediatrics resident on call in the neonatal intensive care unit (NICU) at night, I was accustomed to the rhythmic “whooshing” sound of ventilators (breathing machines) amid the quiet efficiency of nurses caring for newborn babies, many of whom were born way too soon and some weighing no more than a stick of butter. During the Christmas season some thirty years ago, I met “Baby G.” She was not a premature baby, but a full-term newborn whose heart had failed shortly after birth. Her disease, then called persistent fetal circulation, caused excessive pressures in the blood vessels of the lungs, resulting in inadequate oxygen in the blood. Baby G required breathing tubes, intravenous catheters (tubes) placed in her umbilical cord for fluids, and potent medicines to maintain her heart, lung, and brain functions. The whoosh of the ventilator in her case was fast and frenetic, and I knew from taking care of others with her condition that her prognosis was guarded at best.
Through the night, Baby G’s condition worsened and required additional support—progressively more oxygen, more ventilator assistance, more medications. Earlier in the day, air had collected in the space between her lung and the inside of her chest wall, requiring drainage tubes be placed through her outer chest wall and into her chest cavity. More tubes, more blood, more medications, but no improvement. Baby G’s skin took on a purplish hue, and blood tests confirmed she was progressively worsening, the oxygen levels in her blood plummeting. We replaced her breathing tube in case the one she had was blocked, but nothing we tried worked.
At 3 am we called Baby G’s young parents, who had left the hospital briefly, and asked them to come back to the NICU because we did not think their daughter would make it through the night. They returned quickly and sat as close to their baby as they could. They held her hand and asked me if there wasn’t something more that could be done. I told them we had done everything we could; I was at a loss to comfort them. Amid the ventilator whooshing, her father aloud asked God to help their baby. Her mother cried silent tears.
Baby G was in an elevated bed to allow for her care, but I wanted her mother to be able to hold her, something that had not been possible because of the baby’s precarious condition. If not now, though, when? We carefully moved the baby and positioned her in her mother’s arms. All fell silent in the NICU that night, except for the ventilator whoosh, until one of the nurses started saying the Lord’s Prayer aloud, and other nurses followed. I stayed close by the baby as her vital signs slowly grew weaker and slower, anticipating the inevitable.
Then something happened that to this day I can’t explain.
It looked as if Baby G went from purplish to perhaps less so. It was very subtle at first. Thinking it was my imagination, I withdrew a little blood from the tube in her umbilical cord artery and the previously dark blood somehow looked brighter, pinker. Now the whoosh of the ventilator seemed to blend with the prayers, harmonizing. Again I checked the blood and again it looked pinker and so did the baby’s skin color. Over the next four hours, the pressures in her lungs eased and her heart and circulation continued to improve. Her parents were convinced it was a Christmas gift from God. I could not offer a medical explanation.
Still, I feared the worst was not over for Baby G. Over the previous many hours, her blood oxygen had fallen so low, and her blood acid had risen so high, as to be not compatible with life. Even if she defied all odds and survived, as it now appeared she might, she certainly would suffer severe brain damage.
At the end of the week, I went on to my next residency training assign-ment and did not expect to meet this little girl again. A year and a half later, though, I was working an emergency room shift, now a third-year resident-in-training. I had stepped out to the waiting room and was kneeling next to a patient’s family to give them their discharge instructions. I felt a tap on my shoulder and I turned around.
“You probably don’t remember me,” said the father, “but you took care of my baby.” I immediately recognized Baby G’s father.
“There she is!” he said. “She wears glasses, but she is perfect in every way. We always wanted to tell y
ou ‘thank you’ and I thought you’d like to meet her.”
I turned to see a perfectly developed, adorable toddler. I get chills every time I remember our reunion. Looking at this beautiful little girl, no one would ever suspect how she started out in life, and I am still hard-pressed to explain what happened that night in the NICU.
Date of event: 2005
A Silent Miracle
Christopher Stille, MD, MPH
It’s been said that cancer in children is uncommon enough that a primary care pediatrician will diagnose only a handful of children with cancer over the course of his or her career. At the time I met Ariana, I considered myself lucky to still not have encountered my first case of cancer after almost a dozen years in practice. She was eight years old and healthy, the youngest child of three in a relatively new immigrant family from El Salvador. The family had few ties in the central New England city where we all lived, but they were a close-knit family and supported each other well. Both parents typically came to all their kids’ appointments, and though neither parent was fluent in English, they learned fast. They adapted to life in this country better than most families I’ve worked with, helping one another in matters of language and the day-to-day struggles of running a family. After a year, their motivation, cohesiveness, and attentiveness to their health made them one of my favorite families to work with.
I saw Ariana one Tuesday morning for her regular checkup; her parents had few concerns other than she did not eat as well as their other children. She was progressing in school, making friends, and adjusting well. Her growth and development were normal, though in retrospect her weight gain over the past year was not quite as much as is typical for other kids her age. As with the thousands of other patients I had seen over the years for “well-child” visits, I started at the top for her physical exam: head, eyes, ears, nose, throat, and so on, making jokes and trying to put her at ease. I checked her neck and listened to her lungs and her heart. All normal. By the time I got to her belly, I knew I was almost done, and I began thinking about what else I needed to do to finish up this routine visit. But the next few minutes proved that this visit, this day, and the days to come would be anything but routine for this little girl, her family, and for me. To my great dismay, I felt a large, hard mass in Ariana’s mid-upper abdomen.
Immediately, I had stomach pain of my own: I was certain that this was the first case of cancer in my career. Oh no, not her, I thought. Not believing what I felt, and not wanting to believe it, I began her abdominal exam again. I remember even shaking my right hand to make sure my fingers were working right. I felt the same thing. A huge, rock-hard mass. I completed her abdom-inal exam, ruling out that this was her spleen or liver in the wrong place, or stool in a constipated intestine, or a figment of my imagination. Finding the right words to communicate to the family in Spanish that I was not sure what I was feeling, but that it was not normal, became my next challenge. I asked my colleague in the next exam room to feel Ariana’s belly to confirm (or hopefully refute) what I was feeling, then got a Spanish interpreter to help us, trying not to alarm the family in the process. Yet the alarm was evident in their faces.
In the next few minutes, we did our best to explain our findings and concerns to the family, and then sent Ariana for an X-ray. It confirmed that she had a mass in her abdomen the size of a small football that seemed to originate from all the way back in her spine. This was an important and potentially dire finding—large tumors emanating from the spinal cord are usually neuroblastomas, a potentially vicious cancer in children. The rest of my day was spent with the family in the radiology suite doing more studies and then in the oncology (cancer) clinic. We needed to quickly map out a plan to figure out how to best care for Ariana, this seemingly healthy third-grader with the small appetite.
Ariana’s parents were incredible. With a couple phone calls, they calmly arranged to have their other children taken care of. They never lost their composure, despite the increasing sense of dread. They mentioned their faith in God several times, which brought tears to my eyes as I nodded and made a mental note to try to follow their example if I ever had to face something similar with my own family.
According to the American Cancer Society, there are only about 700 new cases of neuroblastoma each year in the United States. Most cases are diagnosed between one and two years of age, and 90 percent of them are diagnosed by age five years. Two-thirds of neuroblastomas have already spread to lymph nodes or other parts of the body by the time the cancer is diagnosed. Ariana, at eight years old, was going to be an unusual case no matter how it turned out, but we couldn’t have imagined just how unusual.
Over the next week, we provided as much support for Ariana and her family as we could. Scans were done, surgeons were consulted, and finally Ariana had a very delicate and high-risk surgery by some of the best neurosurgeons and general surgeons with whom I have ever worked. The family and the entire treatment team felt as if we were standing at the edge of a dark and potentially dangerous forest, with some idea of the risks we faced but no certainty about how things would turn out. This tumor had to be carefully dissected away from her spinal cord by the neurosurgeons and then separated from her abdominal organs and tissues by the general sur-
geons. Ariana was in the intensive care unit for a few days following surgery, and she was able to go home about a week later. Fortunately, she sailed through the surgery and recovery. What could have been serious neurologic and other complications of the surgery failed to materialize.
Far more astounding was what the tumor showed when examined in the laboratory. After hundreds of microscopic sections were examined by the expert cancer pathologists, not a single malignant cell was found. I should say, not a single malignant cell remained, because this, indeed, had been a malignant neuroblastoma at some point during Ariana’s early childhood. It had apparently completely “matured” into a benign, if enormous, ganglioneuroma with no effects other than that small appetite due to pressure on her digestive tract. While malignant neuroblastomas do sometimes mature into benign ganglioneuromas, tumors this large are rarely found entirely free of malignancy and without any of the complications so often seen with this cancer.
A year after surgery, Ariana had two very large scars on her trunk and abdomen, and one tiny area of decreased sensation on the front of her thigh resulting from the neurosurgeons having to dissect the tumor from the nerve root in her spinal cord where it had originated. She had no recurrence of tumor, no need for further surgery, and no need for other common treatments such as chemotherapy and radiation. And she had her appetite back!
To the family, as to me, this was a true silent miracle—a large and potentially terrible cancer that went away without anyone knowing it had even been there in the first place. Cancer spontaneously cured, leaving only a benign remnant as witness. And leaving a very grateful child, family, and physician.
Gracias a Dios, muchisimas gracias.
Date of event: 1999
When “Alternative” Becomes the Only Alternative
David M. Polaner, MD
For an anesthesiologist and intensive care physician, life and death situations are part of the territory. We see patients every day for whom critical decisions must be made and difficult choices must be weighed, often based on incomplete or even conflicting data. We rely on our scientific knowledge and our past experience to form the best strategies, but sometimes intuition or events that seem to defy our explanations play a role, too. And, of course, when our patient is a child the consequences and emotions are magnified.
Years ago I was the director of pediatric critical care at a major New England children’s hospital. We had a small staff of attending (supervising) physicians, and we were perpetually overworked. Three of us took turns cov-
ering a week at a time, twenty-four hours a day, assisted by a very talented nursing staff and highly able but relatively inexperienced interns and residents (physicians-i
n-training). On a Monday morning I was taking over as the attending physician for the week and making rounds with my colleague, who had just finished her very busy week as the attending physician.
We began our rounds at the bedside of the sickest patient in the unit, a little girl about two years of age with acute respiratory failure. She had been admitted a week earlier, her clinical status had deteriorated quite rapidly, and she was now receiving what might be considered maximal support with a breathing tube down her windpipe and on a ventilator (breathing machine). She had little response to our treatments and began showing signs of failure of her other organ systems. A day earlier she had been switched to a high frequency “oscillator”—a special kind of ventilator reserved for the patients with the sickest, most damaged lungs—but things had not gotten better. Despite this very aggressive management, we were making no headway improving her very low oxygen levels or reducing her sky-high carbon dioxide levels, either of which could be lethal. Increasing our sense of dread, there were new biochemical signs in her blood tests that her critical organs were beginning to show the dire effects of inadequate oxygen delivery.
Of even greater concern, this was not this child’s first visit to our intensive care unit (ICU). About nine months earlier she had also been admitted with respiratory failure and barely recovered. Despite an extensive evaluation by numerous subspecialists, no cause had been discovered. Now she was back and even sicker than before, but again with no underlying cause that we could discern.
“I’ve begun to have discussions with her mother about withdrawing support,” my colleague told me. “We are beginning to lose her, and no one can figure out what the problem is. All we are doing is providing support to keep her alive, but we’re giving her no treatment of the underlying disease, whatever that is.”
Miracles We Have Seen Page 10
