Sunday, August 10, 2008

Summer of Fun vs. Anxiety of the Uncontrollable

A musically gifted frined from NY shares a lullably
video

It is difficult to watch a summer come slowly and unceasingly toward its end. This year perhaps more so as we savor every hour of every day not knowing what is yet to come. The feeling here is one of nervous anticipation, a calm before a potential storm, the hazy days of summer making way before the possibility of a hurricane.
Evan sitting on the Texas Children's Gecko

Here are the facts. We have chosen a plan that involves waiting for genetic results. That we wanted this testing done 8 months ago is spilled milk or water under the bridge. The results will be back sometime in the first 2 weeks in September. The offending cells have not gone away and a new mass is forming in the same location as the older removed lesions. Every physical symptom (feeling cold, feeling hot, aches, pains, a cough, etc.) is filled with anxiety and guilt ridden doubt. Evan does not have any swollen glands (a good thing) he continues to act, play, practice and act out just like every other 9 year old boy.
This portal for information is increasingly challenging to maintain. We have a plan, but the eager desire for information on our part is echoed, mirrored and amplified by the sincerest of question, “How’s Evan doing?” To maintain a degree of normalcy we throw ourselves in to the activities of the moment, leading hyper-active lives. Authoring a blog about the trials and tribulations facing a boy and his family as they face the black cloud of rare childhood cancer is not normal. So, we throw ourselves into work, play, study, preparations for the new school year, and for the moment we prize every moment in an effort to pry a little more life out of every minute. We have an understanding that to dwell on the unknown, the uncontrollable is to fall firmly into the old Chinese proverb, - Anticipation of death is worse than death itself. We must seize the day, Carpe Diem. After all the past was yesterday, tomorrow is the future, and God has given us this day, that is why it is the Present. This is the day that the Lord has made, and we shall be glad in it.


In the meantime, cousins come from foreign lands (Carew and family), other cousins get married (Matt & Melissa, Beth & Tim), another cousin came from another state to visit (Meg) and other cousins email (Gareth and family, Jeremy, Katie & Riley) And we are about the business and joy of lives being lived. For it is a more pleasant place to reside in the joy of today than to seek out the deep dark, morass of the ‘What If’s?”
To all who have emailed Evan at Evan@e-nevusnotes.com, thank you. To all who have and continue to pray for us, thank you. To all who have brought meals, or invited us to break bread in their homes, thank you. To those who have given us their hard won PDO and PTO, we say ‘Thank you’. And to all who have donated monies to “Evan’s Fund”, thank you.Food Glorious Food . Meeting friends in West Virginia


IN THE LATEST EPISODE OF OUR SERIAL, WE FIND OUR HERO . . .

Evan had the most awesome time getting a personal private tour of the CISCO international headquarters and lab. We’re not sure if our tour guide will get in trouble for sharing this news, but Evan couldn’t stop talking about it for the next two days. What an awesome friend, the masked man of CISCO shall remain our secret, but way cool. Lunch at the world headquarters and then half an acre of rack mounted servers and networking. Evan has his eyes set on a future employer.
The plans for the Science Fair continue. For a brief history, 2 years ago, Evan built a LEGO robot and programmed it as part of a demonstration, deemed too young to have done it by himself, he did not place. Last year after writing to businesses, accumulating all the parts, and building the experiment he demonstrated and scientifically broke down the energy and financial benefits of different types of lighting (Incandescent, CFL’s and LED’s) 2 years younger than the oldest competitors, Evan placed 4th in the State of North Carolina. This year he wants to build a new computer (he already built his first in 2005 and is still using it) Not only does he want to build it, he intends to video/photograph the steps, and present the project on a multi video display using presentation software detailing its construction, it’s features and it’s benefits. Here is Evan’s long awaited list of supplies to be acquired to begin building his computer.


Zalman Reservator 1 V2 fanless water cooling system (www.xoxide.com/zalman-reservator-1-v2.html)
Gigabit Desktop Network PCI Card
PCI Multichannel Sound Card
N1 wireless desktop card
Sunbeam UV LED UV Blue reactive clear case
ATX Full size motherboard
Quad core or similar CPU
Video PCI card capable of HDMI, XGA, DVI and S-video
4 GB ECC RAM
Tuner card
DVD Combo Drive
500 GB internal HD

From a parents stand point this is over the top, outrageous, and completely awesome. How or why would one discourage this sort of creative ambition in a child? So, if any of you, the readers would be interested in encouraging this behavior, please contact Evan by email (Evan@e-nevusnotes.com), I’m sure he would love to hear from you, and share the mad grandeur of his plans.
Thank you to Meg for giving the family a reason to go to the beach, here are some pictures of Evan in his Australian surfer/sun suit playing in the West side of the Atlantic Pond











Morgan, Cousin Meg, and Evan

Evan, just waiting on a wave