It would be safe to say that there has been resistance to writing this post for some time. But the images that were taken yesterday were reviewed today. Evan’s weight loss has not been caused by nausea or lost appetite, but by the robbery of all nutrition and energy by the tumors in his body. Any Registered Dietician will tell you that a 4000 calorie deficit/day while exercising to lose weight is unhealthy, but to lose a pound a day while doing nothing points to a much bigger problem. That problem was painted in stark terms and images today. Not only had the main tumors grown together and bigger, but Evan’s lungs lit up like the neighbor’s spruce fir decorated for Christmas. And to add insult to injury, the main mass in his back has started to encroach on his spinal cord in a speed and manner that is of primary consideration.
The nightmare doesn’t end, hope is not restored, stark terror runs coursing through mind and body when the plan of action is revealed. Stop all chemotherapy, start radiation oncology to attack the tumor invading his spine, seek to restore balance and quality to Evan’s life by choosing the battle to be fought while suing for peace with the Grim Reaper. There are other possible treatments, but the spinal cord must be saved first and that will give time for all the distant metastases to continue on their destructive paths. Time is definitely not on our side to win the war.
Evan has fought a long brutal war of attrition with his invisible foe. He has been a valiant hero and a beacon of courage and strength to all who have met him; and at some basic level he must be given the dignity of ending his war on his terms, and that is what we will struggle with next. With all the tough love recently over eating and drinking enough, it would be fair to say that the paces Evan has taken of recent have been not to let his family down , afraid that we will not love him as much or think him a failure. Nothing could be further from the truth, but teenagers can be tricky to deal with. All of the above came together in 10 tortuous minutes while Evan was talking with his psychologist.
Therapeutic touch is an accepted reality amongst many medical practitioners; however the art form is used by a seldom few who practice day after day to get it right so to convey support and not pity, calm and peace rather than stress. There is in the midst of these unsolicited touches an appreciation of intent that is rudely whipped to the side by the revulsion and disgust of the patronization of the ordeal. There is a profound claustrophobia that closes in like an English fog in winter that occurs when such difficult information is shared. Support by an unfamiliar touch of an unknown pitying person is rejected in favor of the need for space, air and a few cleansing breaths.
On the way to our next and now emergent appointment the chance to breathe and get bearings is muted by yet another round of questions by a new set of staffers in a new discipline. Yes, Evan was immediately whisked to Radiation Oncology where after bureaucratic badgering, he was fitted for radiation treatment, rescanned and marked for treatment. Tomorrow begins a new treatment, hope is held in an experimental T-Cell vaccine that would be cultured from Evan’s tissue. That hope may be fleeting if the vaccine team does not feel it can be done successfully, the FDA does not approve, or he runs out of time.
If you would like to mail Evan a note of encouragement,
1032 Newburgh Cir.
Raleigh, NC 27603