Monday, October 27, 2008

Where to go from here?

Information continues to come in. A little here and a little there. Our latest information is encouraging, but the advice was discouraging. The information was that the tissue samples which have been genetically analyzed are neither melanoma nor sarcoma; however, the microscopic cell presentation indicates a sarcoma like growth pattern.
The advice we sought was requested without a definitive diagnosis; we asked for a gut instinct. What we got was a kick in the gut. The gist: seek a skilled cancer surgeon familiar with both GCN and sarcoma resection; and a skilled reconstruction/plastic surgeon. Together they would perform a wide margin excision of all potentially affected tissue and reconstruct the body around the hole that would be created.
We could rant, cry, or scream; We’ve done that all before, and We’ll likely do it again, at an appropriate time; however, that time is not now. Now is once again a time for action. Our plan is simple: Pray - for guidance, wisdom, and intersession. Do the research, consider a team, have different tests ordered and completed, and pray some more. Not necessarily in that order. We did not hear the news we wanted to hear on Friday; but we got sound advice - no matter what the mass is, we must come up with a reasonable plan for approaching its existence.
In summary. Evan has a tumor/lesion/growth; no doctor knows what it is; many know what it is not - including normal, melanoma, sarcoma, proliferate nodule; Our quest takes two paths simultaneously: What is IT? What to do about IT? In pursuit of the answers we return to North Carolina, and UNC Chapel Hill.
In the latest episode of medically inspired geo-adventures of our hero; Evan ventured into the Big Apple. One more time, thank you to all who have so generously given that we can find time to distract him from 400 lb gorilla in the room. We would list the sites, but sometimes its just fun to see the pictures and put the sites in your own words.

Your continued thoughts and prayers are a blessing and constant source of comfort to us all. We shall continue to keep you informed of personal and medical news as it arises.

Tuesday, October 21, 2008

And now. . . a taste of the Big Apple!

As the many entries to this blog attest, the writer is not often at a loss for words; but the circumstances of the past few weeks have rendered such a sense of overwhelming love that any response will not do justice to the originators of: prayers, resources and assistance. With that patchwork excuse as a backdrop, a best attempt at storytelling and gratitude will now be attempted.
Let us start at the beginning. First and most importantly thank you God. For those who are new to our story, we have a deep and profound faith in God and a strong belief in our understanding of His interactions in this world. At this point it would not be too strong a point to say that we believe in miracles of divine origin; and that many of the doctors and scientists who we have dealt with, do not. None of this story, or our role in it would be possible without divine intervention. It began almost a year ago, and now has Evan scheduled to see Dr. Marghoob at MSKCC in New York City on Friday. It also has us waiting for a Christmastime arrival of news on a second round of genetic testing being done.
For those who offered prayers that we would be able to schedule an appointment in NY, thank you. It was not easy to get done, and without your encouragement and persistence, it might have been impossible. For those who have been following the ‘new’ science of genetics and its impact on Evan’s diagnosis/prognosis, thank you. The biopsy from 9 and a half years ago was identified, and had not been destroyed, and has been sent to UCSF for Dr. Bastian’s next experiment which will help identify if the cells from 9.5 years ago have the same lineage as those taken last November. We have yet to hear in the results from the comparison of November ‘07 to June ’08, but that bridge can be crossed at the same time as this next round of testing.
It seemed that scheduling was the easy part after it was done, and we faced the realities of dwindling resources and a trip to one of the most expensive destinations in the world, New York City. On the day we began to make arrangements to go to New York, we were hit with an unexpected personal economic challenge; the author was laid off by his employer. A good friend told us that this was a ‘panic’ situation, but we knew what we had to do for Evan, and nothing was going to get in our way. We made plans and got on our knees and were at peace with what would happen next. This was not the first time on our knees, nor will it be the last.
Those named next in this story would likely not wish for the credit, rather they just wanted to do what they could to help Evan. When we had to go to Texas in July; thanks is extended to Nana and Poppa, Granddad, Beth and Bart. Each of you and your offerings were an answer to our prayers. To each of the doctors we have encountered who treat Evan as a person, not just a ‘cool’ science experiment, thank you. Each of you is an answer to prayer. When we asked for monies to help defray medical and travel expenses; Val, Roger & Rex your help has funded the genetic testing to this point; Joe, Kelli, Dustin and the whole crew at Cape Fear Marble and Tile you helped us retire high tech testing co-pays; James, Denise & Blake and the WakeMed Health Park family your generosity has only been exceeded by your prayers. Each of you is a member of our family or such close friends that you might as well be family. And this would be a great end to this story, but . . . God has not just filled our cup to overflowing, He has taken our cup and dropped it in the barrel. We have not been blessed with just a spill; we can swim in the sea of blessings that have been poured out upon us in the last week.
We understand that the two most important commandments are: To love your God with all your heart, soul and mind; And, to love your neighbor as yourself. Many ‘smart’ legalists have thought, and at least one said, “But, Who is my neighbor?” The answer to the question is shared with us in the parable of the Good Samaritan.
Now, let me tell you of our neighbors; near and far, real and figurative. I will start with our neighbors in our subdivision who under the guidance and inspiration of Heather, a mother of 3, is in the process of raising awareness of Evan, the hope he represents, and in raising funds for medical, expenses, travel and research. Let me also tell you of our school ‘neighbors’ Tim & Debbie, Sheryl & Todd, Sharon, the Elementary MIT group, and the many teachers; all who pray for Evan, our safe travels and constant encouragement. They also help transport; provide housing and guide Morgan while we have/will travel.
But what do you say about the neighbor you have never met? Till last Saturday. What is to be said when that neighbor offers to fund a medical consultation visit in its entirety on the word of a fellow believer? 10 days ago, sight unseen, because he sensed God calling him to respond. How do you react to that person inviting his closest friends (Law partners, University Trustees, Rev. Al Sharpton, and fellow alumni of his university) to pray for Evan? His name is Willie Gary, and Evan is proud not just to call him neighbor, but friend. We see him as a symbol of God’s all powerful color-blind grace and mercy, a walking example of blessings being shared beyond those being received.