(Looking over La Crosse from the bluffs above the city. Far off you can see a shimmer of the Mississippi River)
My former roommate Anst (yes, sadly I no longer live with Anst but we obviously still keep in touch) and I decided to celebrate the day with a long bike ride through the countryside. We had heard stories of huge hills and beautiful scenery and so we went searching.
(Anst on the road!)
(It wouldn't be Wisconsin without some corn!)
(Anst leading the way into another round of hills. There were three main climbs each one a good 10-15 minutes of solid uphill)
(There were lots of neat old barns and farmhouses along the way.)
(Me riding along. Anst and I began experimenting with taking pics with both of still riding. The sun was nearing the horizon as we drew close to home - what an incredible ride!)
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And now, switching topics, I have an experience I want to share. This happened last Friday and I've been thinking about it a lot so I decided to try and put some of it in a more concrete form.
The Message:
How do you tell two parents that their darling 4-year-old son, who they brought in for mild shortness of breath, in fact has a tumor occupying his entire pelvis, much of his abdomen and extending into his chest?
This is not a question I usually ponder, but last Friday I was doing exactly that.
I followed our pediatric oncologist Dr. Ettinger, or Dr. Bob as he is known by his patients, into the conference room with Charles' parents and one other medical student. We all sat around a small circular table. It was late in the day and the sun's last rays streamed into the corner room and lit up Dr. Ettinger's dark brown eyes and wisps of his beard as he gazed across the table at Charles' parents. Charles' mother's sweater bulged noticeably, denoting where the couples' next child had been growing for the past 35 weeks.
"Why don't you tell me when you first noticed something out of the ordinary," Dr. Ettinger began softly.
Their son, we will call him Charles, had been feeling well until the Monday before his admission. Maybe a little more tired than usual but nothing too out of the ordinary. Then he started to complain that it was a little harder to breath. But still nothing too bad, nothing to really worry his parents. A visit to their pediatrician had concluded with no remarkable findings. However, the shortness of breath persisted and they took him back to the doctor on Friday. On physical exam he had a clinical picture of pneumonia: shortness of breath, crackles upon auscultation of the lungs, fever and on chest x-ray some fluid building around his lungs. His abdomen also seemed a bit full. On the hunch that something didn't seem quite right his physician ordered an abdominal ultrasound. The technicians running the scan immediately called the ordering provider. As a doctor you never want the scanning technicians to call you immediately. It is never good.
The CT scan that was done immediately after gave a sharper image of what was going on. Tumor everywhere. But even with the tumor compressing Charles' bladder to the point where we could barely identify it on the CT scan, encasing much of his liver and bowels, and wrapping up into the anterior portion of his chest his body had compensated well. As they have been teaching us since day one, kids will compensate until they crash. And now Charles had massive amounts of fluid in both lung cavities and arguably more tumor than internal organs.
Dr. Ettinger took notes quickly in a typical unintelligible doctor scrawl. After relating the story Charles' mother spoke again, "we should have noticed something sooner, now that I think about it he had seemed a little off the week prior to all this. But you know, kids are always getting sick this time of year and..."
Dr Ettinger broke into her spiraling thoughts, "I am going to tell you something and you have to believe me. You got him here as quick as you could.” His deep voice was firm. “There was no way you could have noticed this earlier. Charles' first sign that something was not right was his shortness of breath, and you got him in just when it happened. You did a good job and you must not go down that road of what ifs. We need to look forward now."
Charles's mother choked back tears but seemed to steel herself.
"Is there any information you can give us about his chances?" Charles' father asked.
Dr. Ettinger cleared his throat, "right now we do not know what kind of tumor this is and that makes all the difference for what treatment we use and what the statistics are. But I want you to know this. If the tumor Charles has, has for example a predicted survival of 60% it really doesn't matter to Charles. For him, he will either get better or he will not. And I am going to do everything in my power to make sure he does get better; until he tells us he cannot. So for all of us, what we need to do is focus on helping Charles."
"There is something else you should know," Continued Dr. Ettinger, "I will never lie to you. The truth will at times be very painful but if we do not trust each other there is no way we can work together for Charles' best interest."
"And what should we tell Charles about all this?" his mother inquired.
"Right now we tell him nothing.” I was shocked to hear Dr. Ettinger say this but then he continued, “We tell him we are doing tests to try and find out why he is not feeling well. However, once we find out what we are dealing with, probably midweek of next week, we tell him everything but in terms he can understand. Trying to hide the truth from a child never works. I have been through this scenario many times before and you must know this is not like the movies. Not everyone gets better even when we do our best and the hard times to come more often divide families than bring them closer. You will both need to support each other like never before and be able to rely on those that care about you.”
Dr Ettinger continued, "We have a team of doctors, nurses, social workers, child therapists and more here who will all be working on Charles' behalf. I have one partner, Dr. Peters, who I co-manage patients with but I want you to know you have 24/7 access to me. And above all, I want you to know that I am your child's advocate. If you want to seek a second opinion I will help you to do so. Myself, and everyone you will meet here, will do whatever we can to help Charles.”
As we left the conference room I watched Charles' parents walk down the empty hospital corridor. They each placed an arm around the others back for the final stretch before turning into their son's room.
I knew I had just witnessed something very sad and very powerful. There are many ways in which one can witness an inspirational masterpiece. Some individuals can play a piece of music so beautifully as to bring people to tears, others can use simple paints and a canvas to take a person's breath away, while some gifted humans can make a one-handed diving grab into the end-zone. What I had just experienced felt like a masterpiece of a different sort. Dr. Ettinger's kindness, honesty, experience, and compassion had been woven together to provide perhaps not what Charles’ parents wanted to hear, but what they needed to hear, and formed a foundation for what would arguably be the most intense experience of all their lives.
During the entire conversation I had remained silent but my body felt like it was humming, vibrating at an imperceptible speed. I felt hyper-focused and infinitely present. That moment, being there to work with a family like Charles’, this is why I am becoming a doctor. Having the knowledge to counsel a family is one thing. Having the experience, humility, honesty, and empathy to deliver that knowledge to a grieving family is quite another hurdle. But one I look forward to building towards in the years to come.
