Plausible Deniability has been removed from the equation. It is now confirmed, 4 out of 4 doctors concur that part of the mass removed from Evan’s back was indeed malignant melanoma. From Sloan Kettering to MD Anderson, from Henry Ford to Duke we have a confirmed diagnosis. Perhaps we have all been given this brief window of time, from first utterance to confirmation, as a way of preparation, the calm before the proverbial storm. And a storm is truly brewing.
Doctors from across the country have been discussing what the next steps should be, and they have decided that a scan is in order; and the sooner the better. So this afternoon at 2:00 p.m. we were notified that Evan was to be receiving a PET/CT scan at Duke on Monday morning. History will be the judge of our preparations and priorities as parents and patient, but we’re very glad to have made the acquaintance of Dr. Griener and Dr. Wechsler of the Duke Pediatric Oncology Group prior to getting the call this afternoon. Evan is very excited that he will be getting this first scan. Not thrilled about the I.V., but glad to be moving the process forward.
The purpose of this scan is to determine if there are any ‘hot’ spots of unusually active blood flow. Given the recent surgery the original excision site is likely to be ‘hot’, which raises concerns given the treatment options. Any other ‘hot’ spot is cause for additional concern as it is a potential indicator of metastasis. We have been informed that the next course of action/observation is already a topic of discussions with widely varying opinions amongst the various doctors.
Medicine is an art which is practiced on patients. Most times the doctor is familiar with the malady and the treatments are well known and accepted, or the malady is subject only to known palliative or maintenance measures that ultimately define a quality of life. What then for the patient that defies access to the ‘known’? What then happens to the familiarity of choices? How does one develop an informed consent? When the internet and relationships render the patient as knowledgeable in the areas of diagnosis, observation and treatment, what is the role of the physician? Is it to strut the ego? Is it to tout the academic achievements? Is it to put the patient fully in the aura of the all powerful, all knowing, all caring ‘Doctor’?
In the information age, knowledge is power, in medicine it is the power to make an informed decision, to be an active participant in discussions, to have one’s opinions heard without having to have been subject to the sycophantic process of medical school, internship and residency. The withholding of information, the exclusion from the debate process, the last minute decision making and scheduling is not just wrong, it borders on . . .
Now that the parents have shared their personal angst, anger, grief and frustration; we’ll get back once again to the main protagonist of our book. When we last left him, Evan was eagerly awaiting his role in the Christmas pageant and the arrival of a heavy sleigh, a fat man in red, and LEGOs.
Evan was one of the wise men in our children’s rendition of the birth of Jesus as shared by Matthew. Mom co-directed, Dad ran sound and lights, Morgan narrated, and Evan did his king thing. Everyone had a great time, and they only stayed up till 11 after all the sugar of the post production nosh.
Christmas Eve is Morgan’s birthday, and she treated us all to “National Treasure: Book of Secrets” and she and Evan have memorized half the script in one sitting. Mr. Evan took the opportunity this year to try to stay up and see Santa, unfortunately for him, he fell asleep at around 11:20 p.m., only to wake up at 4:00 a.m. and realize he’d missed the Jolly Old Fellow. While staying up late might put him on the ‘naughty’ list for 2008, Santa obviously had Evan in the ‘nice’ list in 2007 because there it was: the LEGO to beat all LEGOs, the Mars Mission Eagle Base. While there are undoubtedly colonialist and xenophobic overtones to this newest LEGO theme, it is the pneumatic transfer tubes and Alien characters that really get the imagination juices flowing. Evan has managed to convince us that playing Astronauts vs. Aliens is a great family activity, and has had all four of us and Snoopy playing LEGOs on the bedroom floor. What a blast!
Will write again when we can, this was meant to alleviate some of the burden of sharing the details with others, and while it is likely to be cathartic, there is some doubt over whether this is healthy or beneficial to the cause.