E - Nevus Notes: June 2010

The last 5 weeks have been as eventful as they have been maintenance of the status quo. Evan presented his LEGO Mars Mission compilation at Brick Magic, a nationally attended convention with over 8,500 visitors. The next day he started chemo therapy. Then he developed extensive mouth sores, stopped chemotherapy, had his mouth recover, and restarted chemotherapy.
In the meantime back at the farm his Granddad, inspired by Evan, entered the world of computing with a splash. He purchased an IPAD. And between ordering and receiving, he took a five day break in a series of private rooms at the local hospital. So that on one day in the last two weeks, we had the oldest and the youngest of our local clan in hospitals 20 miles apart. (Of course they were both praying for the health and recovery each other). And that is the short hand version of our interpretation of the old adage: The more things change, the more they stay the same.
It is nearly impossible to comprehend extensive mouth sores. Just one at the tip of a tongue or on a lip where a tooth rubs brings most of us to our knees such is the intensity and exquisite nature of the pain. To hold a mouth with five, then seven and finally eleven is beyond our grasping, and yet Evan took it in stride. That stride lost over two pounds of weight, and ate milkshakes as meals for a week, but none the less he was prepared to continue the treatment. It was his doctor, Dr. Blatt, who saw no need to hurt for the sake of hurting. She took him off the medications for a couple of weeks to let his mouth recover, and now has him on a half dose regimen for the foreseeable future.
But why to you might ask has this entry been titled ‘Pay It Forward’. It actually all starts with you the reader of this blog and ends when you are able to see where your love flows. This principle was portrayed in the movie by the same title, where a school boy is challenged by an inspirational teacher to come up with an idea that will change the world, and then to put this idea into action. The epilogue is: The good you give out may not come back to you, but the impact you will have on the world and the awesome experiences of a ‘giving’ journey are overwhelmingly enriching.
A quick recount of how you have enriched Evan’s life. Without the insights of a friend, who has since passed away as a result of the ravages of melanoma, Evan would never have connected with Kids Wish Network. Without Kids Wish Network Evan never would have been able to get to LEGOLAND. Without many other readers and friends, he never would have received a near complete collection of ‘Mars Mission’ LEGO pieces that he just displayed to 8,500 other LEGO enthusiasts. Without you, he never would have had the parts to build his mega computer for the science fair. Without Kids Wish he never would have met LEGO Master Model builders or Joe Meno of Brick Journal. Without the compassion, friendship and love of the staff at UNC he would have been hard pressed to keep going down the treatment journey.
It is remarkable at how the web of connections, compassion and love have cradled Evan and his family through these last three years. Evan’s dad went to high school with Evan’s surgeon who in turn was the mentor to Evan’s granddad’s surgeon. Even the garage door repair man’s sister went to school with his mom.
This time has not been easy, but we have an awareness that we are not alone, we are loved and there are truly positive things that seem to rise from the possibilities of the deepest depressions. Perhaps it is the Phoenix of hope that we see in our lives through our interactions with you, even if that is just reading these notes.
Evan would like to pay it forward. Each time he goes to the hospital he takes three things: a new book, a way to access the internet, and LEGOs. What he has seen when he arrives varies upon the pediatric cancer clinic emphasis. While the building is new and bright, the faces on the patients, parents and staff will run the gamut. Some are sad, some are grim, and some are angry. The doctors present smiles that sometimes mask the underlying concerns of mortal details. Nurses bring laughter and joy that is sometime muted by the serious nature of working with poisons and children. Happiness and laughter bring healing. A hospital where the realities of sickness and death are the predominant theme is a tough place to bring an environment of Living Life Large. Cue Evan to enter stage Left.
In January 2010, Evan came up with the idea of a Mega Build (taking a small LEGO Figure and blowing it up to 8 feet tall) The hospital has some large open spaces, Evan has friends in the LEGO world, people want to do nice things, etc. etc. Then the naysaying questions began: Why would the hospital do this? Why would patients do this? Who would actually build it? Blah, blah, blah.
First concept refinement: Build ‘Jabba the Hut’ eight feet tall, and when it’s time, have the kids and patients in the cancer hospital break it down. The visual and touch power to break apart a slimy evil being that represents how they feel about the cellular invader’s in their bodies would be delightful entertainment.
Second hurdle: Contact the decision makers share the concept and sit back and watch it happen.
Third hurdle: sitting back is not an option. The hospital is onboard, always looking for ways to enhance patient experience and raise awareness. LEGO world headquarters loves the idea, LEGO responsible for US marketing in a depressed economy where every hospital this side of Hawaii is clamoring for something LEGO is a different nut altogether.
At this point, 6 months into the idea phase and meeting this perpetual resistance was tiring. It was also the time the idea was shared with Nathan Sawaya a LEGO Master Model Builder from NYC, and Steve Witt the LEGO coordinator for the Americas. A combination approach was recommended: build the model for scale (there isn’t a LEGO Jabba figure) and begin a lobbying effort.
The idea was again refined. Why do this at just one hospital. There are many hospitals and many patients who would benefit from the project across the US if not the world. Secondly, LEGO can be heated to sterilization temperatures so that even patients in isolation can participate in building. It can be used as a fundraising and awareness event for cancer projects across the country. Bricks could be bought by corporations for publicity and donations. LEGOs can be acquired for pediatric units across the world.
Hurdle Four: The present. To build a scale model of ‘Jabba’, Evan needs ~5,000 bricks to make a model 2 feet tall and 5 feet long. It needs to be built in the next 60 days, transported to Washington DC for Early August and will cost (at $.30/brick)$1,500 to build.
We will be mounting an email campaign directed toward LEGO management in Connecticut that will start around August 1. If you would like monetarily help with this project, if you feel this is a worthwhile endeavor, any donation, small or large, would be appreciated. Please send donations payable to: EVAN’s FUND to 2664 TIMBER DR - STE 198, GARNER, NC 27529.
And now some pictures from Brick Magic

The Welcome Banner