Friday, December 7, 2007

Hurry Up! and WAIT!

We have all been told, “No news is Good news.” We beg to disagree, and research into situational ambiguity informs us that people would rather have bad news than no news at all; and so this week has been one of some frustration.
Slides and samples have been requested and sent to NYU where the only nevus registry in the US exists, slides and samples are also being forwarded to Henry Ford Health System, and requests for review and inclusion are also pending at Yale.
While the academic process has moved forward; a treatment/observation team assembly has been a little slower; however, we now have an appointment with the Head of Pediatric Oncology at Duke – Dr. Wechsler, who has co-authored a paper on pediatric melanoma and its treatment from a study at Univ. of Michigan. That study showed great promise. We see him next Friday, 12/14. At that time we should also have the results back from NYU – the second opinion of the second opinion.

Monday and Tuesday saw Evan take out all his Rokenbok and build a two level train track city; complete with sweepers, elevators and general machinery. We’ll try and get pictures, but getting into his room is akin to taking a walk in the jungle, your just not sure what you’re going to step on or into. He spends hours building, running, reengineering and rebuilding. It is a “task focused” intensity where he is able to shut out all distractions and find a real joy in the elements of making something new and each new rendition comes with a complete understanding of all the activities of the people within the imaginary world he has built.

Evan played his trombone in his world concert debut with the 4th grade band on Wednesday, and he/they sounded great. Thursday night he started working on his science fair project by building a display box for his experiments. This weekend we will all be going to Asheville to hear Nana sing with the Asheville Choral Society in their Winter Concert.
Evan would like to say thank you to all who are offering prayers on his behalf, and the notes of encouragement are greatly appreciated. Our challenge as facilitators of this blog is to share news and information without unnecessarily causing anxiety. This is done with Evan knowing the clinical diagnosis, but knowing he holds only a taste of the worldly preconceptions or fears regarding his diagnosis. Nor does he have either a statistical or analogous view of that information because he lives in a statistical group where n=1. So let us keep our minds and thoughts on the present for none of us knows what the future holds, truly God only knows. Evan on escarpment over Lake Nakuru, Kenya - June 2007 - Thank you Poppa!

1 comment:

Brenda said...

I am so glad you are getting some direction, finally. I will be looking forward to updates. I love the pictures, I could only dream of going such places. Evan is quite a good-looking young man. HI EVAN ! ! ! ! !