Wednesday, November 26, 2008

A time for Thanksgiving

Thursday marks a national holiday for all who call themselves American citizens. A national day of unity to give thanks to God for the bounty of harvest that we each reap as a direct result of the fortune of living our lives in the United States. And this year there is a much to be thankful for as a change in power at the top of the government has occurred in a peaceful and orderly manner. That may seem off base to many, especially in light of our current challenges; but we cannot imagine such an ordeal in a place like Zimbabwe or Georgia.
We would like to say ‘Thank you’ to a few special friends who have seen fit to be angels and conduits of God’s love and grace to us this year. This has not been a good year, and next year looms before our eyes; but we have been blessed and helped through trials both simple and small; as well as complex and overwhelming. Our neighbors continue to amaze us, not a one of them has gone unaffected by the economic downturn, and yet they freely offer all the help they can, they will come and pray with us, bring us brownies and even a turkey for our dinner on Thursday. Our personal hours are precious but they have volunteered hours so that the Research Foundation we envisaged is coming into existence. We are so grateful for your love and presence.
The Shaw University Football team played in the CIAA championship game on a bright shining day in early November. The game was played against the unbeaten Elizabeth City State University Vikings. And down on the Bears sideline was Evan with his Shaw Alumni friend, Willie Gary. But it was hard for Evan to decide who or what he was most thankful for: That the Bears won, that he got to high five all the players coming on and off the field, or that he made a brand new friend in Mr. Gary’s Godson. What an awesome day.
Thank you needs to be shared with Pastor Bill. It would be so easy to smother a child with love at church. It would be so easy to ‘show’ how much God loves you by singling out the little boy for attention and pity. It takes a stronger more discerning spiritual leader to recognize that normalcy held in a sanctuary may be the greatest form of support a church can provide.
We give thanks for Doctors who work so hard, and the results of the latest MRI scans. The MRI was to determine that the mass could be tracked independent of the surrounding tissue, and that there had been no metastases to other parts of his body or brain. Both prayers were answered. The MRI defined the mass and bench lined some questionable areas, and it showed no distant metastases.
And we thank God every day for the love and prayers for all of us being offered from New York to San Diego, from England to Israel and from New Zealand to Brazil. And we will ask for special prayers this Saturday, 4 pm EST (-5:00 GMT) when we have a Service of Healing at our church Holy Cross Lutheran in Clayton (2920 NC Hwy 42 W, Clayton, NC 27520) This is being done in anticipation of the treatment plan being put into place starting December 1. On that Monday, Evan will have a central line catheter surgically implanted under his skin for easier access for delivery of chemotherapy which will start on Wednesday.
It would not be right to share thanks to the key people if we did not mention the teachers, staff and administrators at Wake Christian Academy, Evan’s school. Mrs. Carr and Mrs. Sauls are taking Evan’s academic challenges in stride. Mom, Dad, Teacher and Principal sat down and worked out a plan of action for Evan to stay on top of his work, in touch with is class and on track for his future. In a similar manner Dad spoke to Evan’s class and helped answer the amazingly insightful questions about what was happening to their classmate, and what was yet to come.
And lastly but not least on our short naming of a long list of those we love; are Morgan Butzow, Evan’s piano teacher; and Dave Cawthorn, John Biro, Tim Cattrell, Rick Beare and Blake Ball - these men are closely associated with Pack 24 of the Cub Scouts in Clayton. These two away from school activities are the highlights and focus of many enjoyable moments not at home and not at school.
Happy Thanksgiving, and please enjoy this clip from Evan’s piano recital November 22, 2008 at Meredith College in Raleigh. Oh the joys of belting out your favorite tune on a 9 foot Steinway.



video

Monday, November 17, 2008

Its GameTime!

The preparations are nearing completion. We have scouted the enemy and it is strong, wily and resilient. We have had a couple of practice runs, exhausted the experts, and the tryouts for the skill positions are complete. These few words summarize both the events of the past year and the events of the coming months.
In many ways this is a fitting time frame. It is a year to the day from the first surgery. The crisp fall air has given way to way to the first icy gusts of winter. For those enjoying collegiate football: Its OSU v Michigan, or the SEC or ACC championship, or perhaps USC v UCLA. Whatever your favorite gaming analogy; we see things from David’s viewpoint as he looked up at Goliath. It doesn’t look good from the outside, but we now feel an inner peace. The team is in place and the plan is coming together. In our corner we have guts, skill and compassion coupled with a fiercely resilient champion. In the opponents corner is a locally aggressive recurring mass with a unique array of genetic markers and histochemical signs with a sole apparent desire to take the champions life.
It was almost a year ago that the first entry to this journal found their way to the web. At that time we knew this war was akin to a marathon; now that we’re well into to run, we feel the aches and pains, the constant jarring rhythm of the road, and the cruel attacks on the psyche’s will to finish the race.
Helmuth von Moltke, the Prussian Field Marshal who became the German Chief of Staff in the 1850’s is credited with the quote, “No battle plan survives contact with the enemy” Those of us with a more modern Judeo-Christian outlook modify this to, “If you want to hear God laugh, share with Him your 5 year plan.” While this is no laughing matter, and keeping von Moltke’s adage close at hand we will share Evan’s treatment plan as we understand it.
It all starts next Saturday with an MRI. This will be the last best chance to find an identifiable tracking mechanism for the tumor. It will also serve to see if there have been any metastases of disease to other areas. As we understand the process, the MRI will determine a tumor resonance number, and that number will then be used as a benchmark on later scans to screen for recurrence.
At a time to be determined by Evan’s UNC treatment team (Dr. Julie Blatt – Pediatric Oncology; Dr. David Olilla – Melanoma-Surgeon; and Dr. John Van Aalst – Pediatric Plastic) he will begin a course of chemo-therapy to attempt to shrink the tumor. After this treatment, Evan will undergo an operation which will target not only the tumor, but any tissues associated with the tumor. The terms used for this sort of surgery are ‘aggressive’ or even ‘radical’. The goal is not to experience a bout of the woulda-coulda-shoulda’s at some later date.
Once this resection surgery is complete, there will be a reconstruction of the resected area. This will likely involve the unrolling of muscles surrounding the area like unrolling a Swiss cake roll. This flap reconstruction is aimed at returning full function to any affected muscle groups. In an almost cruel ironic twist of medical reality, this reconstruction will likely hide any recurrence of disease from visual identification. Ironic because it is only through seeing the mass grow back that we have been able to identify a recurrence.
Following surgery, there is likely to be a follow up course of adjuvant chemo therapy to target any remaining cells left behind after surgery. This plan as presented will take 9 months.
Yeah, Yeah, Yeah, but How’s Evan doing?
Evan continues to put up a brave front, but some of the façade on the walls is beginning to crack a little. One of his most endearing traits from a parents standpoint is his amazing tolerance for taking in negatives without responding; however, just like his Uncle David in Canton, when he blows you need to take cover. As we have kept him informed as to processes, meetings and appointments he is up to date on all aspects of his situation. We refuse to lie to him which can be extremely challenging when he asks incisive hypothetical questions about treatments and outcomes.
Evan has made new friends with others who are battling cancer. And those contacts are both reassuring to him and encouraging to others to see his smile and hear his infectious laugh while marveling at his insights, wisdom and resilience. These ongoing interactions with other soldiers in this life and death battle are seen in stark contrast with the relationships with teachers and classmates.
There exists a frustration of failed understanding that interferes with attempts at normalcy. Two main avenues of peer expression occur: Pity without purpose or understanding (Well intentioned sympathies expressed in painful ways) or a complete lack of compassion due to ignorance or choice.
How would you interact with an obnoxious unintelligent bully who does not have the interest in showing any compassion even if such a capacity existed? And before the testosterone rises to the suggestion of giving the miscreant bully a good thump in the nose; Evan has learned to modify his behavior not to resort to violence in conflict. (It should be noted that as cracks have appeared in his façade the rationalizations of events involving violence has rivaled current, former and future US Presidents for inventiveness) Let’s just say that a 9 year old boy should not be hindered with the basic understanding of stress – Where the human mind overrides the body’s basic desire to thump someone who richly deserves it.
Other than the people Evan has been enjoying school, relishing in his country report on Wales, reading lots of books (Start Wars, Technical how to manuals, fiction) and is gearing up for his Science Fair project. Components are being acquired; furniture is scheduled to be modified; and practice is occurring. The latest joy of course involved Microsoft. Evan modified his micro form PC and switched out the CD-RW drive for a DVD superdrive. Because Windows recognized a major component change, it demanded to be reactivated. You should try explaining the intricacies of intellectual property rights and their piracy and the resulting attempts at controlled commerce in the digital world. It was thankfully reactivated with the steps associated with a new computer build – one component added at a time starting with the keyboard.
Cub Scouts has been a wonderful distraction for the past year, and Evan is on track to earn the Arrow of Light based on his accomplishments to date. With the schedule of events for the coming year we are hopeful that he will continue to push forward in his pursuit of this honor.
As a family we face an uncertain future. If we all look closely at this statement it is redundant. The future is unknown to us because we have yet to experience it; so by definition it is uncertain. And yet in the midst of this current crisis we have found comfort and to varying degrees peace. At times of crisis and stress we all face the internal battle between fear and faith. That battle interacts synergistically with the conflict between hope and despair. It has been said, that faith ain’t faith till it’s all you have left to hang onto. But Faith without the knowledge of what to fear is not tried nor strengthened from the trial it is but a flimsy aphorism upon which we state our beliefs. Show us the person who has weathered the storms, been purified in the crucible, and let us feel and behold the faith of that person. In that person we may find a ‘childlike’ faith, in that person cynicism and sarcasm die deaths on the altar of faith and hope born not of idle imaginings, but of the fiery & frosted furnace of real life and real adversity. That person for us is Evan. We are just telling the story.
If you desire to help beyond your thoughts and prayers, please contact Heather Wray hwray@nc.rr.com for details about Evan’s Fund or the Melanoma-Giant Nevus Foundation.

Wednesday, November 5, 2008

Friends, Neighbors, Baked Goods and Video

Thank you to Heather for getting this to happen (Link to video story below). And thank you to Heather and Amy for their work on the bake sale. The monies generated will go toward seed money for the MGN Foundation. There are many answer for other people wrapped in the mysteries surrounding Evan.

Today Evan sees Dr. Julie Blatt at UNC this morning and we humbly ask for your continued prayers for healing and discovery.

http://wake.mync.com/site/Wake/news/story/12499/community-rallies-around-boy-with-rare-condition/