Thursday, June 4, 2009


While we do not believe in ‘Fair’ as in, “She got to do it, and I can’t; that’s not fair!” It only seems fitting that young master Evan gets to enjoy a sunny day or two at this point in his life and his perseverance through the tough part of his life journey that he is emerging from. It also only seems ‘fair’ to keep all the faithful people; who have followed, thought about and prayed for Evan, up to date on how he is doing.
Evan is doing very well. While there are monthly trips to the Pediatric Oncology Clinic at UNC Chapel Hill; these are to maintain the health and viability of his surgically implanted port. These port flushes must be conducted once a month until the port is surgically removed. It has been decided that the port shall remain in place until we get through a sufficient number of follow up scans as to confirm what we are seeing – the cancer is gone, and isn’t coming back.
The scans will be MRI’s every 90 days for the next 2 years or so coupled with accompanying alternating visits to his Pediatric Oncologist, and the Oncosurgeon. The only other long term physical impact will be the ongoing cleanliness and infection avoidance rituals affecting his left arm (Washing hands, scrubbing nails, no gardening without gloves and long sleeves, etc.)
On Evan’s scholastic front, he completed 5th grade and is now considered a rising 6th grade middle school student. He won his section of the Science Fair, and the blue ribbon hangs proudly from one arm of the stand. The same day he presented his project, the Melanoma Giant Nevus foundation threw a benefit concert on Evan's behalf. Heather Wray did an amazing job, and the talented musicians were spectacular. The blue ribbon would have been anti-climactic if a friend from church hadn’t started shipping parts to Evan and asking him to build a computer for him.
It seems that the order or importance and priority of topics for this post are in reverse order – if you were Evan. This is stated because the last couple of tidbits for this post would undoubtedly been the first and possibly only information shared if Evan were the author. That would be because Evan’s mind revolves around two concepts, computing and LEGO. And the first item of importance in Evan’s world would have been the opening of a LEGO store right here in Raleigh. At the beginning of this year, there were only 11 LEGO stores in the USA, so this is a big deal.
Evan had been granted the wish of his life n January, a trip to LEGOLAND in California, by the wonderful people at Kid’s Wish Network. When I (Dad) heard about the new LEGO store opening in Raleigh, I called KWN and asked if we could talk to LEGO or if they would prefer to make contact. They (Vanessa) graciously told me that they would be happy to contact LEGO and see if their #1 fan in NC might ‘help’ with the Grand Opening.
At least a month went by and then a phone call came out of the blue – the LEGO Master Model Builder was going to be in town for the Grand Opening and would like to meet Evan. The rest is history. Evan met Dan Steinenger, the only LEGO Master Model Builder in the USA at the end of day 2 of a 3 day Mega-Build event for the Grand Opening. Dan was in town to oversee the building of an 8 ft tall Yoda from Star Wars, Evan wanted to meet the man he hopes to replace when he enters the workforce. We’re not sure how long Dan had intended to spend with Evan, but he asked Evan if he had any questions; Evan pulled out the list of previously dictated questions, and all of a sudden there was a meeting of the minds. Not just Evan to Dan, but Evan to Bob (The manager of the Potomac Mills store in VA) and Evan to Joe (The Editor of Brick Journal, the LEGO aficionados monthly fix of all things Brick) A brief meeting lead to a leisurely 2 hour dinner which lead to the male bravado of social events (Anything you can do, I can do better!) and Evan threw down the gauntlet, breeching all known LEGO etiquette, he challenged Dan to a LEGO building race.
And so the next day at 3:00 pm, the race was on

By the time the afternoon was over, Evan was completing Yoda, Morgan had won a major LEGO set, Mommy was frantically looking for a 2 x 6 Yoda green brick, and Daddy had redesigned the base unit of Yoda assembly to account for a brick shortage; and most importantly for the next installment, Evan has been invited to attend the Brickworld convention in Chicago as the guest of Joe Meno, the Owner/Editor of Brick Journal.