Thursday, November 25, 2010

Give Thanks & Thank you!

Today is Thanksgiving Day in the United States. Regardless of folk law, turkeys, posh looking Pilgrims with stiff collars and professional American football; the first Thanksgiving was less of a celebration of feasting success, and much more the appreciation of divine grace that they had been the recipients of a miracle that allowed them (the Pilgrims) to continue living. They thanked God not for turkey, corn or Native American friends (Indians to the less PC); they thanked their Heavenly Father for the miracle of continued life.
Today is a day of reflection in our house. After three years of struggle (almost to the day) we have been handed a miracle of continued life. Some will argue mightily that medicine and science have succeeded in Evan’s case. We do not discount this stance; but we also acknowledge that a power has been called to bear on Evan by no less that the effort of prayer. Those prayers have been yours, ours, and so many others who may just hear about Evan; and offer a quick word on his behalf in their conversations with God.
We cannot thank each of you enough for those words; however short, long, ugly or eloquent that conversation may have been. From those efforts we have received miraculous results. Both of Evan’s tumors have shown decreases in size of greater than 50% in very short time. Conventional wisdom is leading us to a reality that there will always be some residual scarring inside that we might equate with Jacob’s limp or Paul’s thorn for Evan; an ever present reminder that we are to be grateful recipients of a life touched by God. And a grateful heart touched by God has a greater responsibility.
Such a responsibility is not to stand on a rooftop praising God for our miracle. It is to pray for all whom we meet. It is to be compassionate and sharing with all who seek our counsel. It is to be a beacon of hope to those who feel lost and abandoned. It is to shore up the supports of those who have experienced loss beyond words; to share faith to those who face uncertainty.
Let us share the stories of 4 such people that you might offer prayers of hope, love and support; even as you may be reclining with your friends and family on this day of thanks.
Grant, 8 years old, and his family found out this spring that he had a brain tumor. After a valiant fight, Grant died earlier this fall. We know that he is in Heaven; but left behind are his mom, dad and older brother. Please pray for their peace during this tumultuous time, or offer a thought that they find hope and joy in the coming days and months.
Josiah, 14 years old and a talented athlete, and his family; found out early this fall that he had been diagnosed with malignant melanoma under unusual circumstances. His excisional surgery resulted in a status of NED (No Evidence of Disease) but they now face the uphill battle of getting a definitive diagnosis and treatment choices. Please pray for their insight and continued strength as they face a long uncertain road ahead of them, or offer a thought of thanks on their behalf while they push on in his battle.
Consider Rachel and her 2 year old son, just diagnosed with a malignancy associated with his nevus and NCM (Neuro Cutaneous Melanosis). He has begun a course of chemotherapy; and due to an extensive lack of study into this rarest of rare situations means that divine guidance for insights for their medical team is essential. A word for love, compassion and healing, a thought for peace and continued support would not be remiss.
Think of Chris who is Evan’s Sunday school teacher. She found out this fall that she had colon cancer. After surgery she now faces chemotherapy. She shaved her head to raise money for childhood cancer research and continues to teach Sunday school. Offer a thought and prayer for her continued courage and the strength of a husband who stands by her as a pillar of faith and service.
As you sit at your feast this afternoon, take a moment as you look at the plate of bounty before you and consider taking that time and pondering these words from Paul’s letter to the church in Thessalonica:
  • We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor prompted by love; and your endurance inspired by hope in our Lord Jesus Christ.
And as you go forth from this day, know in your heart that we do not toil alone in our journey; and no matter the size, weight or other dimension of your burdens you too will find support, love and encouragement from your Father – even when it sometimes comes from and through your fellow travelers.
In closing, as we enter the commercial fray of this holiday season; We thank you for your continued support as our battles continue; And we offer prayers of hope, peace, joy and love to each of you - in, by and through the power of the spirit of the season, The Holy Spirit. Many continued blessings to you all.

Saturday, August 7, 2010

The Mice of NIH

For all who are familiar with the children’s story, The Rats of NIMH, we now offer this sequel. (If you haven’t read it, follow along, no information from the original is required for this story. ) For purely background information, mice share 98% of our genetic code which makes them ideal for laboratory purposes of medical modeling.
10 years ago the founders of Nevus Outreach were invited to a conference about mouse models for research, the conference was in Bar Harbor Maine at the Jackson Laboratories where they develop and distribute mouse lines for genetic research. When confronted by the very beautiful and influential Megan, they began to seek out a natural nevus presenting mouse. Across the world the order of DND (Do Not Dispose) for spotted mice was sent.
Two years later, Spot, the mouse was born in Japan, and the beginning of mouse model research for nevi was jumpstarted. Since that time, 14 different variations of pigment generating genetic code have been identified.
Jump forward to yesterday. Evan was invited to participate in the NCI –omics project. In the –omics project, an NIH doctor creates xenograft mice and matching cell lines for comparative study by researchers across the country, and by default the world.
In xenograft research, a person’s genetic code is fully sequenced, reproduced and then spliced into a mouse. The mouse that is created is like a child of the xenograft donor. These mice can then be studied and analyzed. Evan is soon to be the ‘father’ of Spot 2A (Evan’s code), Spot 2B (Nevus), and Spot 2C (Tumor). It takes about 30 days to become a mouse progenitor vs. 270 for a human.
These mouse lines and the corresponding matching human cell lines will be available for research to any scientist in the US who has access to the NIH. The potential research will allow windows into a specific case of GCMN, and also into tumors arising within a GCMN which is in turn a much more focused look into how melanocytic tumors genetically differ from normal tissue (The nevus differences by themselves are red herrings of malignant process)
As an adjunct aside, it likely that the mice used will have come from UNC; and there are Psychological researchers at NIH & UNC who are interested in LEGO therapy; and we will be both expanding our involvement with NIH and keeping our treatment at UNC for now.
And that’s the end of this chapter.

Saturday, July 31, 2010

A Battle Won

Hope for the best, Prepare for the worst. This is the underlying motif of human existence. You are hoping against hope for three years. You are prepared to take the next tortuous step toward a dead end; and a miracle happens you don’t know how to respond. To capture the moment we have called upon the wisdom of a previous generation; In the eternal words of Great Auntie Pat, “We were gob smacked”. Or “flabbergasted”; or subject to “shock and awe”; or . . . . Nana’s adage of being ‘knocked down by a feather’ or any other aphorism expressing the act of being stunned cannot do justice to the events of the past week.
First an apology; this news should have been shared as soon as we heard it as proof of the power of prayer; positive thinking, caring and compassion. Evan’s tumors are smaller. Let us repeat that: Evan’s tumors are smaller. And now for the rest of the story . . . .
Wednesday July 28 was a long day at the hospital. In an attempt to evaluate the current status of the tumors; and to establish a baseline for evaluating next treatment steps; and to provide the latest information for NIH; Evan was subjected to a full battery of tests. And by the time you’re done with a day like that you would feel like you had been hit by a broadside of the King’s finest cannon. Start with an MRI, then move to point B and have a CAT scan, then move to point C and have a Chest X-ray while you drink a quart of delightful contrast dye, then back to point B to be abused by a Radiology Technician (Sorry Alicia, we know he doesn’t represent all RTs), Then to point D for a medical conference, point E for central line access, point F for a pulmonary function test, back to point E for a blood draw. Phew we’re exhausted just recounting the day.
As we sat waiting at point F; Paul received a call from a number he didn’t recognize. And the following dialogue ensued
Excited voice, “Their smaller!”
Paul, “Who’re smaller?”
More excited voice, “Evan’s tumors, they’re smaller”
The next part of the day is a little blurry. Tears, laughter, awe, joy, prayer, stunned silences. For the next 48 hours we were all in a haze and constant requests to ‘pinch me?’ for confirmation of the here and now. At the same time there was an underlying fear that there might be a phone call indicating that a mistake had been made in reading the scans. We suppose understandably human, a tempering of unbounded joy. Then we received an email with actual dimensions, and this is where you will join us in both unbelief and awe of the God’s healing touch. The largest tumor had shrunk to less than 30% of its previous size 90 days before. After 3 years, multiple surgeries, and countless prayer; Evan has won a battle in this war.
And it is this understanding that it is but one won battle and not the end of the war that is guiding our continued request for your thoughts and prayers; it is why we will still be going to the NIH next week, and why we will not stop in our pursuit of answers to questions that our God has raised in the care of Evan.
Thanks be to you for your compassion, thoughts and prayers; Thanks be to God for his awe inspiring healing touch as it is applied in our lives, and especially for His touch in the life of Evan.

Sunday, July 18, 2010

Fish or Cut Bait

Two years ago Evan and parents went to the amazing and remarkable conference hosted by Nevus Outreach in Dallas. At that time Evan’s case was presented to the leading scientific experts in the field of pigmented lesions or nevi. The advice from that meeting have driven our path forward: keep looking, don‘t take ‘no’ for an answer, and keep on asking the hard questions.

Two weeks ago we went back to Dallas, and met new friends, gathered more knowledge, shared insights and hope and got re-energized by like-minded people to continue pushing forward. The meeting could not have come at a better time, the encouragement could not have been more timely, and the sincerity of a common faith of families affected by nevi is something that cannot be expressed in words.

This time we took our daughter who had her eyes opened to the fact that there were other people in the world just like her brother, and they had siblings just like her. And children and teens and adults talked and played freely in the comfort and knowledge that they were not alone, but members of a family. Yeah, we might be the family of 101 Dalmatians, but we love each other just the same; no matter race, creed, religion, politics, age, intellect or income. Love is a powerful, powerful weapon against darkness, aloneness and fear.

Timing is something that we do not understand but really appreciate. As we sat in a science meeting asking questions of experts; experts began to seek us out and asking us questions. And the dialogues lead to suggestions, and suggestions were relayed instantly to our team at UNC. And more conversations were started with other experts in other locations, and the entire conference was alive with citizen scientists conversing with the real scientists, each person learning from the other and building the body of knowledge that will lead to breakthroughs of peace and hope for families now and in the future.

But as we sat in that meeting, we received word that Evan’s experimental chemotherapy trial was not working. That we would have to go back to the drawing board and reevaluate all the options. This process was/is intellectually challenging, emotionally racking, physically tiring and spiritually draining. That has been the state of our house this week.

In this post we will allow you inside the process not so that you may marvel, or ask, “How do you do it?” but rather, if you see something that we have not, that you would speak up and share what you see. Your insights, thoughts and prayers are no more or less important than anyone else’s. When you have read through this post and you are willing to share, please email thank you.

The time to weigh options is upon all who are involved with direct care and process in the life management of Evan Coleman. These are not easy decisions to make. With each passing development and milestone (positive of negative) the pressures seem to mount. As his primary advocates we have decided to approach this recurrence with a more deliberate step by step process and we must periodically review the available information to better guide our decisions and to ensure that we are consistently acting in his best interests.

His medical team is geared to an either/or decision making process. The options are clear to this component: chemotherapy or surgery. There is at least a third option, known but not often considered, wait and see. And there may be many more options available but as yet unconsidered.

The debate: Medical options (chemo vs. surgery) vs. Parental options (action vs. inaction) the following is such a review of the situation and options.

The decision making process must be entered into with the overarching understanding that life for the sake of life is not a valid argument in and of itself. The quality (both longevity and enjoyment/pursuit of happiness) of life of the patient must be balanced against both treatments and outcomes. Fundamental ideas exist within the medical community: Hope is the objective of every meeting, every person has Evan’s best interest at heart, and no one wants to do him any unnecessary harm.

What we know:

  1. The tumors are locally recurrent.
  2. No known life threatening organ involvement – invasion/infiltration of solid or hollow organs
  3. The tumors are not visible on Positron Imaging, but are visible on MRI and CAT.
  4. The tumors are not recruiting nutrients in abnormal amounts (Nuclear Bone & Kidney/Bladder Scans)
  5. That previous surgeries have failed in the attempts to address the recurrence of the tumors, and in fact may have contributed to the recurrence. This includes wide margin excisions by a highly qualified surgeon.
  6. The previous presentation (from 7 months to 8.5 years of age) of the tumor process had exhibited a rapid growth curve that stabilized around 6 months from trauma. Since treatment was initiated in November 2007, there has never been a review of tumor growth rate following surgical trauma, until now.
  7. The tumors have not responded to traditional or experimental chemotherapy.
  8. The DNA of the tumor does not match any known melanoma DNA (Or other cancer).
  9. Under the microscope the tumor cells look are consistent with nevus tissue with some mitotic and spindle elements that look like cancer if it were present in normal tissue. This is a gray area of cell science.

Medically there are several possible options although getting access to some of them might involve jumping through many hoops and cutting through a lot of red tape.


  1. Taxol/Carbo FAIL – inefficacy
  2. Temsirolimus/Depakote FAIL – toxicity
  3. IL2 (Interleukin II/Interferon) ??? – ICU necessary due to high dose reactivity (14 doses, spaced 6-8 hours apart, 7 day rest period, and repeat for total of 28 doses over ~12 days)
  4. Vaccine Trial
  • Dependent of prior failure of other agent
  • Late stage
  • Clearance/waiver/acceptance
  • Other Options presented via National Institutes of Health (NIH)

Surgical Intervention
  1. 6th attempt at wide margin resection with first removal of skeletal structure (Fat margin of L Kidney, Splenic border, External L Pleura, and sections of 10th & 11th ribs)
  2. Removal of bulk of tumor in biopsy process to acquire live tissue for development of vaccine.(Done at vaccine developing facility – Bethesda. MD)

Motivations, Fears and Basis

Inaction may lead to metastasis and early death.

Continued chemotherapy is causing neurological & liver damage and is leading to increased risks of illnesses later in life .

Continued surgical therapy is validation of Einstein’s assertion regarding insanity, and will likely lead to early death.

Failure to comply with medical advice may lead to removal of valued counselors

Psychologically the entire process has worn increasingly upon Evan’s psyche and his hope is dampened by every failure.


When reached this point in our discussions it was time to call upon more objective minds with the only bias being for Evan’s well-being.

First was asking Uncle Jon, the sustainability expert (sustaining Evan is right up his alley) and he pointed us in the direction of deep ambiguous questions of qualitative thought. Messy, deep, introspective, intangible questions of gut feelings based on information at hand without trying to match the quantitative information to our hopes or desires. He posed 4 thought provoking questions as a starting point to our investigation. They were: what are the stressors on our family, if you could remove one stressor, what would it be and why? Who would benefit from this action? Would this resolution allow other stressors to be removed?

Second on our list were Nana and Poppa, the medically experienced and smartest people we know to ask about science and medical processes. After they looked over the information you have now read, they directed us to start asking all the “What If” questions. At the top of our list is “What if Evan dies?” This question should be relegated to the bottom after all other questions have been asked and answered. So now we have Chemotherapy, Benign, Malignant, Discovery, Surgery, Vaccine, Interferon, and many others. Help us push that first question down to the bottom, send us you thoughts on “What if” Let us work through the possibilities and know that no question is too small or assumed to have been asked by someone else.

We meet with Evan’s medical team leader tomorrow to start the review process, but the real deadline for our review will be July 28, 2010 at 7:30 when Evan starts a series of MRI and CAT scans and when done with that we will gather for a team review.

Please keep us in your thoughts and prayers, and if you have the smallest idea of a question, please email us at Thank you and God’s many blessings to you and your family.

Tuesday, June 15, 2010

Pay It Forward

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
Evan's Table

Tyler stops by

LEGO city

Evan builds for LEGO

Evan builds more 4 LEGO

Joe Meno admiring fellow adult fans of LEGO

Evan answers questions

Nathan Sawaya - LEGO Artsist

Tuesday, April 20, 2010

Revel, Rebel or Recur?

Dateline: Raleigh

It has been over 3 months since anything has been written here. 3 months of relative peace, joy and personal growth along the normal paths of teens and preteens. Evan has been struggling through the challenges of 6th grade being asked to become more and more self accountable. The growth demanded is a challenge for most 6th grade boys, which was made more difficult for Evan because fighting for his life over the past 2 years. All said He has been growing up before our eyes in all aspects. Medically some tighter areas around surgical scars were gently freed with massage to float over the underlying muscles and there are no new growths under or on his skin.

Evan went for a regularly scheduled follow up CT scan on the first Wednesday in April, and the next day at 8:00 AM our world stopped! Two new masses had shown up on the CT scan, inside his ribcage, along with a 3rd troubling area in his right upper arm. By 4 pm that same day, a bonescan (radioactive phosphate uptake rates in bony structures) for the arm was done. It had been a wild goose chase, a red herring that just unnecessarily ratcheted up the pressure; an overeager radiology resident hoping to cut his teeth on a pediatric melanoma case had seen something and had jumped the gun, perhaps not wanting to be the one who missed something. Idiot!!! Don’t project your worst fears onto someone else.

We had been transported in time to November 2007; here we were back at square one. What is this thing? How do we kill it before it kills Evan? What are the options? What do we know? Who can we turn to and what can they bring to the table?

It turns out we have a lot of information at this point. Eleven years of Evan’s medical history, relevant details from multiple pathology, radiology and surgical reports, little scraps of interviews woven into a detailed tapestry of knowledge. But the picture is missing one critical element: How do we live with or remove/kill this thing? The medical team is set, each member with a different viewpoint, each member with Evan’s best interest at heart, each member humble and respectful of the rest of the team, each member the best we could hope to locate. Chemotherapy treatment with an experimental cocktail was proffered as option C, Surgical resection of the masses was option S; and the team presented either option C then option S or option S then option C. This told us a great deal more. Evan’s team does not have confidence in either method alone to resolve this problem. This is both troubling and comforting that they did not try and hide the information from us.

Technically the two masses inside the chest cavity are not life threatening at this time. One about the size of a large thumb is in contact with Evan’s left kidney, near his spleen and in contact with the rib from which it apparently originated. The other is about 2 inches away on the next rib up and is in contact with the tissue sack that lines the chest next to his left lung.

Option S involves removing the masses, the layer of protective covering over the left kidney, a piece of rib, the piece of pleura and reconnecting everything with a goretex mesh. Future reconstruction would be possible when confirmation of no additional growths is confirmed, in the meantime, Evan would be required to wear a kidney protecting vest at all times in public.

Option C involves Temsirolimus & Valproic Acid (Depakote). Temsirolimus is a solid tumor fighting drug that attacks the blood supply for the mass. Valproic Acid, a mood flattening anti-epileptic drug, is a synergistic force multiplier, in that it makes the Temsirolimus more effective. How the pharmaceutical company came across this combination must be a good story? And while it has proved successful in adults, its use in children has never been studied. What is known is that the predominant side effect of the multiplying effect is extensive mouth sores and general irritability.

Forgive us for not jumping for joy over the options. Major invasive and life altering surgery (okay everything about Evan is life altering) or an unproven chemotherapy with an almost certainty of painful mouth sores and an overly irritable 11 year old (If his teachers thought he was a barrel of laughs the last 3 months, they could be in for a rude awakening for the last 6 weeks of this year)

Evan now leads his medical team conferences and is both the primary recipient of information and the leading questioner. Like any good leader, he has his meetings before the meetings to get his facts straight, take a look at the angles likely to be presented and develops a positive encouraging demeanor. We reach decisions as a family team, but where parents ruled supreme in the past, Evan now has an active role in the medical care decisions.

His decision: Option C first, and we’ll wait and see on Option S. We let the team know tomorrow.

Monday, January 4, 2010

Spell Future - N O W

ABSTRACT: Merry Christmas and a Happy New Year, Evan is doing well from all appearances, we know little more than we did 12 months ago, we are thrilled to be spending another Christmas together as a family, and the world continues to turn.
BODY:Merry Christmas, Joyous Noel, Happy New Year. These words are flung about like tinsel on the tree at this time of year. We look back on this past year in amazement, awe and gratitude. Things have not gotten easier, in many respects they are in fact more difficult. As a family we do not have answers to questions of health, finance, or even midterm future events. As a part of Evan’s medical team, this year has brought more questions than concrete answers. And as a nation we struggle with the concept of living as one part of a bigger world. Is it any wonder then that we look to this season as a way of recurrent Hope in our lives?
Not a day goes by that some acquaintance, associate, friend or foe asks the fateful question, and “How do you do it?” How do we do what? Continue to live in a light of Joy, Love and Peace. Seek to move forward each day in the shadow that Evan may die. Perhaps the question would be stated in a less euphemistic but direct: How do you continue to live when your son IS dying? It is the verb that is the key. It is always the action that drives our thoughts. It is the motion that pushes the fear to the forefront of the mind and demands the attentive nature of the catatonic. How is it that we are able to move forward when all worldly indicators tell us to stop living and pose for some neo-modernistic American Gothic perhaps entitled: Cancer’s Ravage.
We cannot hope to share all the lessons we have learned in these past two years, we cannot relate the visions and lessons of our struggle in a manner that would have the same meaning for you as it does for us. We are different from you, and the lessons for us are not the lessons for you. We are all each unique, a single specimen. We can however point you in a direction that you might seek out if you find yourself in a place of pain, discomfort or illness. Let us tell you of a place where Hope can be found, a place where Peace resides, a place where Joy is unrelenting even in times of great sadness and sorrow. It is a place inside your heart, a place often hidden by the mind, but a place that exists for each and every one of us.
Karl Marx once described religion as the opiate of the masses, a drug that makes the challenges of life tolerable for those not seeking the enlightenment of self fulfillment in a worker’s paradise. In this post-Christian era those who profess belief in Jesus as savior are often decried as uneducated or worse. Emphasis on following dogmatic and doctrinal rules has given way to doing what feels good so long as it doesn’t hurt someone else. Tolerance of all others, their beliefs and cultures, has challenged the role of social and cultural mores as espoused by the ‘church’ as an anachronistic thing of the past that hinders others ability to pursue their heart’s desires.
What we would share with you is the place of Faith in our lives. There is no better time of year to share the concept of Faith than Christmastime. We do not offer religion as an opiate but rather tender the thought that it is our Faith in God that has given us the strength to push forward through dark times and fear. We find that we have been touched deep in our souls by a Creator that sought our self-awareness and appreciation first of the creation, the universe that houses us, and upon those revelations that there are times, places and spaces beyond our ability to grasp put there for all eternity to be grasped by those who try to fathom a creator beyond our ability to ‘know’. His ambassador to us is Jesus. The ambassador’s portfolio contains documents attaining to his life and teachings, testimonials’ to miraculous events, and a promise of ever-present assistance.
How do you define intangibles? What is Faith, or Hope or Peace, or for that matter Love? Our illustrations often fall short in their inadequacies or faults, these concepts defy our abilities to box them up into bite size morsels; but we can all identify them when we see them. You are able to look inside yourself for your desires for something better: HOPE; You look inside yourself to desire for no conflict: PEACE; you are able to understand the warmth of a hug: LOVE. But what of your faith? We choose to rely upon this simple explanation: Now faith is the assurance of things hoped for, the conviction of things not seen. It is the belief that an uncollaterized loan will be repaid, it is to trust in a promise. It is the defining element in a true friendship; that another unrelated person will have my best interests at the heart of their actions toward me.
Evan started the year in chemotherapy with no hair and our faith and hope were under assault. Peace was a day without nausea and joy was as fleeting as a snow flurry around Raleigh. One week later all that was erased, at least for 4 days as we travelled to California and Legoland care of Kids Wish Network who arranged for this remarkable vacation. In February, chemotherapy was stopped and Mom became the Head Athletic Trainer for the Carolina Railhawks professional soccer team in the Triangle area of NC. March was the first surgery of two this year. April was a culmination of 3 years work as Evan won the NCCSA Science Fair held in Wilmington NC and said no to additional chemotherapy. May came with new friends in LEGO at the new store opening in town and a near win in a brick build race with The LEGO Master Model Builder in the USA. June saw a Daddy/son trip to Chicago for BrickWorld and a visit with Kjeld Kirk Kristiansen owner and CEO of LEGO. July was a series of road trips to Nana and Poppa’s home and to Charleston to watch the Railhawks. August ushered in a return to school for Evan and the advent of Middle School. September saw a new mass developing on Evan’s back. October saw the new mass removed and began a new series of academic questions around what ‘it’ is or is not. November and December have focused on settling into school and staying on top of all interests musical, mathematical and engineering.
As we give thanks to a Creator for creating, and loving us enough to have saved us before we even knew we screwed up it is appropriate for us to let you know why we march onward. From where we stand, creation was not inevitable or random but an act of Love and Hope and Peace and Joy. From our understanding creation is like the application of graphite to paper making a 2 dimensional object: to create a situation in 4 dimensions (Height, Depth, Width and Time) requires the actions of an entity/entities operating in at least 6 dimensions (2 more than the average person can comprehend) We are like clay on a potter’s wheel, without the right work, we will have flaws exposed as shattering bubbles in the kiln of life, without the right work we will just be a lump of clay. But with the love, patience and craftsmanship of an artist we stand to be works of testament to the artist. Our choice is not to be chosen for the wheel; but to be malleable and workable in the artists hands; to admit to our flaws and to have those flaws worked out of us, so that upon firing, glazing and firing again we shall become worthy of retrieval from the workshop and become useful tools in the home of the Creator.
The gift we celebrate this season is not the gift of a baby sent to die for our sins, nor is it to celebrate the joy of giving and receiving the latest gifts. It is to celebrate that we are all available to be placed upon the potter’s wheel to be worked and to work with an artist whose knowledge and skill surpass our understanding. That our Joy in life is that we accept our role, fulfill it to the best of our abilities and in the place we are. Our Peace is found in the acceptance of the unacceptable, that despite all popular common culture we are not free to randomly choose our path for life. Our Love is found and kindled by the attention of the artist in our lives and in the common purpose of those around us we call friends. And our Faith is that all this is true to the best of our ability to grasp we have received assurance from the artist that His promises are firm, and that our Hope is centered on our desire to be the best workable material we can be.