Saturday, December 22, 2012

Moving Forward

I will never do justice to the memory of my son, nor replicate the emotions or events that have been encompassed in the posts to date.  That said, I have begun a new blog that is part of my ongoing process of trying to come to terms with the loss of such am amazing spirit with whom we were charged to watch over for the past 13 years.

You can reach it by going to Observations

We thank you for coming here and taking the time to feel some of the emotions associated with dealing with a chronic fatal disease in a child, and we pray that you will never have to experience this yourself.

Thursday, August 23, 2012

A Year of Firsts

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

This is not the end. It is also not the beginning. It can at best be described at half-time. For those who follow Evan and his story through this portal, there is no small amount of voyeuristic horror, fear and revulsion of a story that holds only one central theme of the pain and suffering of a child become man and now a memory to those left behind. Evan’s story has at times reached out and grabbed readers by their throats and shaken them from the calm reverie of their lives.

There can be no apologies for those words and the emotions that conveyed a tale that so long as it was being written was in itself confirmation that it was not happening to the typical reader. For those who read with intimate knowledge of the agonies of this journey a large debt of sorrow and regret is extended for the pain and memories that Evan’s story may have dredged up.

At 5:45 am on Saturday, August 18, 2012 Evan MacGilvary Jenkins Coleman breathed his last breath. The details of that moment are so intense, personal and overwhelming that they will not be recounted here. What can be shared is that the previous day Evan had begun to decompensate (A medical term indicating that his body was no longer able to maintain the necessary balances required for his life to continue) As the evening approached he fought to find a position of comfort that ended with him doubled over in his bean bag while watching ‘Pirates of the Caribbean’ by way of a mirror on his knee.

As the evening wore on it was clear that he was going to be unable to sleep and the only thing any of his medications was accomplishing was to take the mental edge off the distress of breathing 80 times a minute, unable to cough, heart rate over 160 and a steadily decreasing oxygen saturation level. And as Evan came to an understanding that his fight would soon end, he leaned back into the arms of his mother and allowed her to cool his brow. The five plus hours of this physical ordeal is akin to running over two marathons.

Fighting to the end he continued to sip water through a straw and at 4:45 even asked for a medium Coke. At around 5:30 his final words to his parents were, “I love you.” As the fight and life left his body fifteen minutes later, a calm serene peace descended on his body and he breathed his last. No one will ever be able to say that he did not fight the good fight far longer than any other we have known. Many medical providers have commented along Evan’s journey that his lack of complaining put many adults to shame and set a high standard and wonderful example for his fellow patients.

And so began the Year of Firsts. There was no fanfare of Angels trumpets; there was near silence due to the absence of ragged breathing and an oxygen concentration machine turned off. For those who with the morbid fascination of an entranced audience who have been watching and praying for a different outcome, the moment of collision is but the beginning of the dissipation of energy that had been brought into the impact equation. (Impact equations are a fundamental topic of Physics: The Law of the Conservation of Energy states that energy cannot be created or destroyed only transformed. All the energy going into the initiation of an event must be accounted for at the conclusion of the event.)

The external image of a slow motion train wreck serves the purpose of creating a picture of an unstoppable event resulting in cataclysmic damage that resolves itself not in the moment of impact but through the derailment of cars, collisions with unmoving adjacent objects and structures and general chaos and mayhem. If this verbal description has not grabbed your imagination, please consider watching the beginning of the Steven Spielberg movie “Super 8”.

The internal image for those closest to the event the image is that of a nuclear bomb disposal unit that has suddenly realized its failure as the white hot searing light of nuclear detonation announces the unit’s failure to contain and render the problem inert. The resulting crater lies across all life paths of the unit’s members and the crystallized glassy debris is left behind to explode on contact or cooling at unannounced times and circumstances that leave the impression that one is walking in a minefield where every step, every turn, every attempt at avoidance merely sets off another explosion of a glassy radioactive mine.

The hole left behind is an immense crater of unexploded ordinance that reveals itself in sudden overwhelming waves of intense painful sadness. There is no way to cross this hole quickly without imminent self-destruction, as every turn reveals a trip wire of a memory that explodes into an instant full realization that there will be no more trips to McDonalds for snacks or trips out to relieve anxiety. There will be no more need for Evan’s laundry to be done, or finding out that the last load in the dryer was his. The discovery of a casually discarded jacket over the backseat of the car is enough to initiate total meltdown.

Let there be a necessary intervention of tangential information. Evan is in a better place – whether your belief system runs toward Heaven as does ours, or you are agnostic or atheist, there is no denying that he is no longer suffering the agonies of suffocating to death as a disease process robbed him of the ability to exchange oxygen and carbon dioxide in his lungs. Therefore this writing and the services of this weekend serve a singular purpose of providing those who mourn Evan’s loss a place to jump back into life as we begin the process of coming to terms with our loss.

The metaphorical reference now returns to the smoking radioactive crater that lies in front of all paths of future travel. A look behind shows that the last five years have been littered with wonderful memories through a wasteland of the battles fought, some won some lost, in a war that seems to have been forfeit to an enemy known only as cancer. And as we look at this hole in the ground pockmarked with mines and triggers a salt rain of tears falls in an almost continuous downpour. There is a fear that the sun will never shine again, and any laughter is forced, inappropriate and cut short. Life seems both very wet and very over because we cannot step into the hole. The hole is deep, treacherous and functionally impassable. We are stuck.

As we peer into the future we see that the salt water rain will fill the hole, and around us are growing trees and plants that over time will be fashioned into boats for travel across the salt water lake to the other side. The hole will never go away, but it will become passable and a beautiful place of remembrance.

But today the future does not take away the Year of Firsts. Today it was the first time to request a table for 3 instead of 4. Three days ago it was a first visit to a funeral director and tomorrow it will be a first visitation. There has been the return of now unnecessary medical equipment; and then there was the gathering of pictures and things that defined Evan’s life which is not easy for a young man who lived such a rich life in just 13 short years. In the next twelve months among the known Firsts will be birthdays and Christmas, Halloween and Easter; and these can be accounted for, anticipated and supported. What we fear are the unknown Firsts. These are so numerous at the moment due to proximity of people, places, stories and events. But what will we do in 3 months’ time when we get an invitation for Evan to attend some event that he attended so joyfully in the past, or turning up a lost sock, shoe or mitten when cleaning a closet. Those are the times when the black sheet of overwhelming grief will only be lifted by the joyful sharing of the best moments of his life with people such as you.

Final notes: A Memorial Webpage has been set up for Evan, where you can leave memories about Evan, pictures can be posted, and you can read how Evan impacted the lives of so many others. It also contains the details on services and connections to the ongoing Miracle 2012 legacy. It can be reached at This site will remain in place in perpetuity.

Lil’ Duck: Lil’ Duck was born out of a legacy from another victim of cancer and her friends extension of vicarious living through another duck, Squeaky Edgar who travelled the world capturing events, stories and memories that were shared through a public blog so as to maintain an ongoing interaction with the world. And so our Lil’ Duck is a visual representation of the remaining spiritual presence of Evan in our lives. As Lil’ Duck goes with us, he provides a viable cover for those moments that we forget that Evan is not with us as we ask for tables for four instead of three, or we do activities that we know that he loved to do. We do not plan a blog for Lil’ Duck but rather convey the presence of his memory through pictures on facebook in those places that he loved to be. In the past day Lil’ Duck has been spotted in Evan’s Garden, at the Adidas Outlet store where he got his hallmark shoes, and at the Cracker Barrel where he loved to order pecan pancakes.

And so this piece is done, the story will continue and the writings will be given life and venue in so other arena. In parting and in some ways hinting at the future; children no matter how unique should never be used as Guinea Pigs. For all the failures of medicine, morals, and people – guilt and regrets will never change the outcome of events in the past. And while we have traversed some rough days in the near past and have some rougher ones in the next week; we hold onto Peace, Hope, Joy and Love – knowing that the greatest of these has been, is and will continue to be Love.

Monday, August 20, 2012


Evan MacGilvary Jenkins Coleman, age 13 of Raleigh NC was called home to heaven at 5:45 am Saturday August 18, 2012. After a five year battle with malignant melanoma, Evan was held in his mother’s arms as he came to eternal rest.

Evan was born February 16, 1999 in Royal Oak, Michigan (a suburb of Detroit) to Paul and Elizabeth (Lizy) Coleman nee Zimmerman. He was born with a Giant Congenital Nevus that was the origin for his cancer. His elder sister, Morgan, was a schoolmate of his at Our Shepherd Lutheran School in Birmingham, MI until the family moved to Raleigh in 2006. At that time Evan was enrolled at Wake Christian Academy. In the fall of 2006 he accelerated into the third grade, and a little over twelve months later he had his first of 6 surgeries to address the mass that had developed on his left back. He persevered through school until the chemotherapy medications interfered with his traditional school day. As a result he began home schooling in 2010.

Starting as a Tiger Scout in Michigan, he continued Scouting at Holland’s Church and finally settling at Pack 24 in Clayton where he earned his Arrow of Light prior to crossing over to Boy Scouts. Some of his favorite times were camping both with the Scouts and with his family in the parks and woods of Michigan and North Carolina.

A Renaissance Man in a sound bite age; Evan loved music, art, math, animals, building, architecture and computers. In 2009 he won the NCCSA Fine Arts Science Fair project for his construction of a transparent body computer that powered 3 interconnected video monitors. Musically he played trombone, but really loved improvisational piano. He leaves behind a dog, 2 dwarf hamsters and over 30 fish.

A long standing LEGO builder, he vacationed in Legoland California as part of a Kids Wish Network trip in between a first round of chemotherapies in 2008. His love of life, courage, perseverance and grace under pressure inspired everyone from professional soccer players to the more than 100 volunteers who worked on creating the first half of Evan’s Garden – a place of peace and reflection. It is also the site of his first full scale building from his designs.

Some of his deepest frustrations arose from an intolerance of stupidity, lying, selfishness and whining. His outlets for these situations revolved around his artistic expression and first person gaming. Among his greatest disappointments was when people gave up on him because they gave up on their ability to help him. The eternal optimist he continued to research his condition within a week of his passing, and he constantly challenged his parents to see the brightness of his hope during the most difficult of struggles.

His name means ‘Little Fighter’ in Welsh, but he is remembered for the big fight he gave to his arch nemesis Melanoma. His journey of 6 different surgeries and 4 different rounds of chemotherapy were an ongoing testament to his will to live. In the end, as his ravaged body bore the brunt of the disease, he lay back in his mother’s arms as she cooled his forehead and let his father massage his feet as they sang songs of peace and love, prayed and read scripture. He passed into the peace he so richly deserved at 5:45 am. as his pain, anxiety, discomfort and torment were ended.

Evan is survived by his parents, Paul and Lizy, his sister Morgan, Grand Father Rev. Paton Zimmerman who lives with the family. He is also survived by his paternal grand parents, Margot and Bernard Coleman of Asheville, NC; And extended family from Michigan, Pennsylvania, Georgia and England.

Visitation will be August 24, 2012 from 5-8 pm at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520. The church can be reached at 919-553-4784.

A Celebration of Life Service will be held at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520 at 11 am. Holy Cross Pastor William Beyer will lead the service and Evan’s Grand Father Rev. Paton Zimmerman will deliver the sermon. Scouts in attendance will serve as ushers.

Arrangements are being handled by Cremation Society of the Carolinas, 2205 East Millbrook Road, Raleigh, NC 27604.

Evan’s Fund was established in conjunction with Miracle 2012. ( These efforts have resulted in the establishment of Evan’s Garden and a concerted effort to eliminate Evan’s medical debt. Going forward the focus of these efforts will revolve around establishing a research protocol to attack the cancer Evan suffered from and to reach out and fund those organizations that both helped and inspired Evan including The Children’s Inn at NIH, Nevus Outreach, Inc., the LEGO Foundation, and others.

Thank you to all the people who have been a support to us.

Life is like a Road

Life is like a road,

The road is often not straight,

or clear,

and sometimes the road splits,

and we must choose what direction to go.

Sometimes we can walk this road with friends,

other times we must walk alone.

But when you get to the end of the road,

and all is said and done,

nothing really matters anymore,

except for the journey,

and the love you've shared and received during it,

and the fact that this love will stand the test of time,

and go on forever.

-Evan Coleman

July 30, 2012

Wednesday, August 1, 2012

A Brief History of Wilmington NC – Evan’s perspective

This morning Evan woke up in Wilmington, NC at around 8:30 am and with that act a day of equally intense and juxtaposed emotions was begun. In the last 8 hours we experienced heavy concern, deep soul defining sadness, sweet uplifting joy, profound gratitude and humility, and then full circle to heavy concern tinged with hope. But as with all things these last six weeks nothing is realized without a firm foundation.

In this situation, the foundation laid was actually the big events of the past weekend: The Concert, and the Grand Opening of Evan’s Garden. With no reservations or qualifications, nor cynicism or sarcasm; both events were roaring successes. They of course could never have been realized without the overwhelming generosity of time, talents and gifts of friends and family. To try and frame the support; there were over 100 volunteers who participated in preparing a blank grass canvas into a warm and colorful place of peace and tranquility that is Evan’s Garden; On Saturday, over 30 volunteers, 4 gifted music groups (Erin Nenni, When Forever Comes, Scott Barton with his Vocal Flava, and The Josh Pepper Band), a talented Stage Manager, an amazing MC, and a gifted Director put on a near flawless highly professional event.

Evan kept his distance as he is want to do at the moment, but listened, watched and observed all the people and activities, all while tracking down technical support issues on Saturday, and designing the next element in his namesake garden on Sunday. That said, the intense level of activity took its toll and Monday was very much a crash and burn day that had his parents on their knees more than once seeking one more hour, minute or second of time.

By midafternoon Tuesday the emotional and physical effects of the weekend had worn off to a great extent and Evan coming out of the woods after battling an infection for the past 5 days perked up enough to say that he wanted to ‘go out’. These words are buzz words for his need to leave the place he feels will be his Waterloo. A decision was made to go to the beach, a final family beach vacation, the destination: Wrightsville Beach just outside Wilmington, NC. 2 hours away, Hotwire for hotel, and we were loaded in two cars (Evan travels with wheelchair, portable oxygen concentrator, 2 tanks of oxygen, pillow and 4 blankets, computer backpack) and on our way.

Wilmington has a special place in our hearts as it was one of the first places visited in North Carolina 10 years ago. Evan spent July 4, 2002 watching the Wilmington/Wrightsville Beach Fireworks from the deck of a beach house on Topsail Island just up the coast. 3 years later he did his North Carolina City project on Wilmington, did you know that Walt Disney World could fit the entire City of Wilmington in its boundaries? In 5th grade he travelled to Wilmington Christian School with his own designed and built computer to win the State Science Fair. Since that time a visit a year to Wilmington with a requisite stop at the Trolley Stop hot dog restaurant became family tradition. Except we hadn’t been this year, but there was an itching in the pants and a searching for the chance.

Last night as we pulled into the hotel there was a heavy overcast and the streets were lively but dark. A late night food run came back wet but victorious and a midnight breakfast of chocolate chip waffles with syrup, bacon and eggs was hungrily devoured by a famished Evan. This would be a good time to note that it had been determined several weeks ago that the radiation therapy had sufficiently disabled (please read destroyed, crushed, liquidated or your own vernacular for severely damaged) the main tumors that there was no significant energy depletion from them; so that Evan’s weight loss was now only due to his own appetite. Enter Prednisone to reduce lung tissue swelling and its desirable side effect of appetite enhancer.

The sun rose at about 6:30 am this morning, but was nowhere in sight as the rain pelted down and wracked window and pavement alike, lightening sparkled and the wind whistled and howled around flagpole, lines and corners. There had been no family beach time last night and it looked doubtful at best this morning. When Evan woke up his eyes told a story of anxiety. This was not home, this was not familiar, this was not good. Effectively his trip came to an end when he took the medications necessary to calm him down.

After driving around Wilmington a la the late night drives to lull him to sleep when he was a baby, we gathered up our belongings and in the pouring rain left Wilmington behind Evan. During these remaining months with Evan there are diametrically opposed strands of thought that beg for attention: First is the strand that wants to secure memories by doing those things and going those places that will be indelibly etched upon the surfaces of all our minds never to be washed away; the second is the strand that never wants to know when the last time you’ll visit a memory place with Evan.

And so as the rain poured over the car, tears streamed down a face knowing that this was the last time Evan would be in a place so near and dear to his heart. Truly this treasured place of memories will never be the same in the future. A walk on the beach will bring back memories of carrying a little boy from surf to shower so as to reduce the pain of chafing sand inside a skin tight body suit. Or a calabash meal on the inland coastal waterway will conjure memories of family friends and a little boy with a boyish grin and quick wit. Even the wind whistling through the dune grass will draw out memories of children’s laughter echoing as they run through the hot sand to the waiting surf; prominent among them a boy dressed in royal blue from his head to his ankles. Yes, August 1, 2012 will mark the last day Evan was in Wilmington, but will also be a day that Wilmington will live in us.

An hour later as we traveled the flat ribbon of road that is I-40 in the coastal plain, the sun broke through the clouds and shone warmth and light on everything including Evan sleeping in the back of a cruising car. The warmth of the sun was as uplifting as the rain had been depressing and was a reminder that comfort follows heartache even if some time and distance must be traveled before it is realized.

Tears gave way to somber comforting joy. Comforting joy gave way for the humbling of being informed of a generosity beyond the means of most mortals. Our family, friends and none too few strangers who have become friends were able to help us raise slightly less than half our goal for Saturday night. This is not to be sneezed or sneered at, on the contrary it is something to be overjoyed about for we know the challenges of a down economy, many people gave to Evan to the point of hurting. We knew this and appreciated every last penny for it represented the best that people could do. As the evening wound to a close we also knew that the generosity of the players, teams, management and league office of the NASL had come together to allow accumulated funds to be 2/3 of the goal for Saturday.

When Lizy first began working for the Carolina RailHawks as the Head Athletic Trainer, she also became an employee of Selby and Brian Wellman the then owners of the team. It was a relationship at a distance, but the Wellman’s had a place in their hearts for Evan, for what he represented and for how he conducted himself. Being the owner of a minor league sports team is not an easy thing to do, and friends are few and far between just from the sheer logistics and influence that can be unseemly and destructive to team goals. That said, the Wellman’s went out of their way to give back to the community in so many big and little ways.

It can also be said that they never forget to take care of their own. Almost two years after turning ownership over to another entity, the Wellman’s did not lose sight of the importance of maintaining relationships, supporting the underdog and reaching out with a helping hand. With by far the largest single donation toward Miracle 2012: The Concert Selby Wellman donated a sum equal to the shortage of the nights goal and a little more. Humility is to know that some gifts when given are too great to be repaid, that the only appropriate response is gracious and thankful acceptance.

And so we stand humbled before our old friends, family, new friends, business partners and former employers; with a bowed head and grateful heart we acknowledge that we are not worthy of such divinely inspired gifts but we will accept them and use them wisely.

Exhaustion is now settling in on the rest of the family, and tomorrow we will once again seek to be revitalized by working on Evan’s Garden. If you would like to experience some peace and revitalization we invite you to come on by and we’ll put you to good use. To borrow the saying of a friend; “We started from dirt, and we’re gonna go back to dirt. We might as well get familiar with it in the middle”

Many peace and blessings to y’all. If we don’t see you in the garden, perhaps you’ll stop by to hear The Regulars as they Jam for Miracle 2012 on Saturday, Sept. 22 at 7:00 pm at the Big Easy in Cary.

Sunday, July 15, 2012

Dearest Evan . . .

With two teenagers in the house, tensions sometime run a little high; and one of the side effects had been a distancing between Evan and his mom.  The following letter was hand written by Lizy to Evan; it is reproduced here with both parties permission.

July 11, 2012

Dearest Evan,

Let me begin by saying, I have no idea what you are feeling or what you are going through, only you can. That being said, let me tell you how much I love you and always will, NO MATTER WHAT! I pray that I could somehow take away your pain and suffering, but I cannot. I have stayed awake at night shaking my fists at God in anger, saying, “How can you let this happen, take it from him, give it to me”. But it is not in God’s plan, it is not for us to understand how and why at this time. Maybe someday we will look back and have better understanding. I have even bargained with the devil-yes me…

Sometimes I feel desperate and would go anywhere and do anything and spend every dollar I had to save your earthly life. That is unconditional love. That is what I have for you. I always have and always will. Because you are a special gift from God-even though you may not feel that way-I know you are.

From the time you were born, I have questioned God, “what did I do wrong when I was pregnant with you?” We will never know, maybe the stress of Dad’s accident as a paramedic. It doesn’t matter, it was God’s will.

We knew from a very early age that your name Evan, which means “little fighter” in Welsh, was well chosen-because you have been fighting your whole life. First they told us you might not live past 5 years old if you got NCM (neurocutaneous melanocytosis). You were on the prayer list at Beverly Hills United Methodist Church in Beverly Hills, MI from the time you were born. Then there was the time you got sick and a few days later you couldn’t walk. Do you remember that? You were hospitalized for about 4 days at Beaumont Royal Oak Hospital. Dr. Shwayder came to visit you (even though he was a Henry Ford Dr). He brought you toy snakes to scare the nurses with! Then there have been the “bullies” over the years saying nasty things to you out of ignorance.

When we moved to North Carolina and saw the new dermatologist Dr. Prose at Duke, he told me that we had done the wrong thing. We should have had your nevus removed. I remember coming home and calling Dad (he was out of town on business) and crying, telling him what Dr. Prose had said-questioning our decision.

We attended our first Nevus Outreach Conference at Snow Mountain Ranch in Colorado when you were about 1 ½ years old. We talked to many of the families there about their experiences with their children. One family who had a boy about 9 yrs old at the time had tried to have serial excisions (about 10 surgeries). They said their son was in pain all the time and he had scars instead of nevus. They were sorry they had started down that path. At that first conference we went to in 2000, they couldn’t say it would significantly decrease your melanoma risk to have the nevus removed. The research just wasn’t there.

Dad and I sat up that night talking, praying. I still remember the room and the desk/table that we sat at. We decided this was the way God made you and “God doesn’t make junk”. It was that night we chose not to remove your nevus.

Then came the terrible night in November 2007 when we got the phone call about your cancer diagnosis. We knew you were in for the fight of your life.

You have been fighting now for almost 5 years Evan. I don’t know how you do it. You have more strength and perseverance than I have seen in most adults. I marvel at the way you handle yourself. You have never once complained. You are an excellent patient; trusting in your parents and your medical providers (well mostly). But most of all, through it all, you have trusted God.

That is the most important thing-trusting and believing in God. Only HE has the power to heal you. HE is the “great Physician”. I pray every day that he will heal you-completely-Do you ask God for that?

I remember one time after communion; you shared with me a few years ago, that you asked God to heal you. I hope and pray you continue to ask for that daily. It is ok to ask God for that, he wants to hear from you, whether it is in anger or love. He is a big God, with big arms, that you can always run to and always talk to.

I know Dad has talked to you about this journey and how it feels like you are alone or have to travel it alone. I’m sorry it feels like that sometimes. I experience that at times too. I feel scared and don’t know what to do sometimes. That’s when I go to God because HE is our only source of hope and peace.

There is always hope, don’t ever give up hope. Miracles still happen and I believe that a miracle can happen for you Evan. That’s what I pray for every day.

I love you today, tomorrow and always,


p.s. Sorry if I annoy you most of the time, I really am trying my best to do whatever you want 

Monday, July 9, 2012

Hey Dad . . . When am I gonna get better?

Settling on a title for this post has almost been as difficult as capturing the events of the past week. Would it be “Recognizing Modern Miracles” or “The Calm Before the Storm” or “Ctrl-Alt-Dlt”. But at 3:00 am on July 4, 2012, the above question came out of Evan’s mind and started a cascade of events that could only begin with – How do you answer that question for a child with whom the medical establishment has determined there is no curative course? So began one of the most profound conversations in the life of Evan’s family. And more important than how the question is to be answered; should or could that question be answered with any truth or integrity?

But before things get too far too fast, it is necessary to rewind the tape and review the events of the last week. Last Friday, Evan completed the first course of his latest chemotherapy. Like all chemotherapies there are requisite pre-meds, co-meds and post-meds all designed to keep the patient’s body in a subdued state of compliance so that the desired poison is not rejected by the safety system of regurgitation. That of course is the medico-speak for attempting to deny the Technicolor yawn, anti-yak yak, etc.

The problem with medicines that are designed to suppress body sensations, such as nausea or pain, is that they invariably dull the other senses such as executive function, reticular activating system, and intellect. In effect they cow the patient into a dulled state of submission where interaction with reality is occluded by a pharmaceutical fog. All this is to say that when Evan completed his course of chemo on Friday last, he also stopped a key pre-med, and by default regained a sense of self-awareness. So much so that he felt he was waking from a 2 week sleep and re-entertained the idea of interacting with the world rather than running from it.

This emergence from the pharma-fog coincided with one of the true low points of a low situation when the funeral directors had come to the house for a pre-event meeting (Sorry but that is the best this poor writer can do for euphemism). The two people who came out were the utmost in professionalism – well appointed, soft spoken, and were compassionate to the nth degree. A person who will be named later has told us that the beauty of gallows humor is that it is always funny, that said this same person topped themselves when they said that the professionalism of the funeral director was much more closely related to the potential of repeat business than to Evan’s singular situation.

Perhaps only slightly less off color was the thought that anyone as good looking as Evan was likely to return from the grave as a Zombie and become an instant teenage heartthrob, but this twisted digression must come to an end because of what happens starting Saturday June 30th. Evan stopped taking all pain meds of his own accord.

He also rejected using the available oxygen. A pervading fear had been that his pain would be too much to handle, that it would drive him to distraction. After almost five years of managing pain, Evan knows what he can and cannot deal with. What would drive any normal person to cry, “Uncle!”, “Mercy!” or “Oh Golly!” as one person once declared while having a dislocated finger reset; is handled with a dignified quiet demeanor that masks all pain from public inspection.

All this was happening very quickly, so what happened next was stunning. Family, having read so much grim news, descended like the cascade of a waterfall. After a quick jaunt from Detroit to Raleigh, in the Arrest Me Red Convertible Mustang, Uncle Jon (Paul’s brother) rolls up unannounced to lend a hand. Three amazing days later, after blood sweat tears and an ongoing duel with a spirit level, rake and pavers, he blows back out of town leaving behind a patio, an engaged Evan and smiles all around. It must have been similar to having the Lone Ranger drop by in the midst of a bank robbery, the only difference being Jon was drinking the 5 gallons of water each day instead of Silver.

Friday morning saw Evan’s art teacher bring her high school group of home schooled students by and the first blocks of chaos were laid into the upper patio. Ms. Amanda and the Cruz Crew were terrific. Evan’s first real look at the garden space was when he looked out at his class mates laying block, installing edging and tidying up garden beds. His comment, “That’s so nice of them” was both understatement and foreshadowing for his increasing awareness of his surroundings.

Friday evening saw the arrival, feeding, playing and departure of the Coleman Cousins of Canton (Michigan not a Swiss district) In the midst of a week at the beach, Aunt Mary drove Jeremy, Katie and Riley from Myrtle Beach through Raleigh on the way to see Nana and Poppa (Evan’s paternal grandparents) in Asheville. The whirlwind visit started with pizza and ended with ‘Catch Phrase’ a board game. Surprising everyone, in the middle of a round of Catch Phrase in walks Evan who takes a seat at the table and joins in without him or anyone else missing a beat.

Saturday morning was busy (Weather alert – temperature in Raleigh topped 100+ degrees F this day, the first of 9 straight 100+ days) a small army of volunteers from Lighthouse Baptist Church in Benson descended on the house and set to finishing the fire pit / walkway project. Tim and Matt were phenomenal leaders, knowledge centers and tractor drivers. At the same time, Gene and Jack from Holy Cross Lutheran began the carpentry to box in the underside of the deck/porch; and mommy went off with Jeremy and Danielle to acquire the trees and shrubs to flesh out the botanical foundation of Evan’s Garden.

All the while Evan looked out on the beehive of madness as pavers were laid, walkways prepped and the foundation for the shed of his design was dug. The comment of the day, “A lot sure happens in your garden when you’ve been asleep for two weeks.”

Saturday mid-morning saw the arrival of Aunt Ginny and Cousin Meg who had driven through the night from Detroit. They had braved Ohio in the dark as a storm had wiped out all power to half the state. All this with a friendly 6ft stuffed bear filling the back seat. Little did they know that they were the talismans of power outages as we lost power on their second night in town. Kirk, the bear, decided to stay with Evan rather than returning to the Detroit area with Ginny and Meg when they left on Tuesday.

Sunday, as Evan began to pull himself out of the oxycodone bog his mind had fallen into an unfortunate side effect had reared its ugly head – constipation. There is no nice way to say this, but Evan hadn’t had a substantial movement in over a week, and this lack of activity led to the Poo Fight of 2012; or how and why Evan holds fast to his teenage credentials in the midst of life ending illness. Ultimately nature will have its way, and things began to move in the right direction within the day. It is an arguable point who was happier, Evan or his parents, and both for very different reasons.

Monday was a bittersweet day as Evan exerted reason and control over his situation by determining that it would serve him no purpose to travel to Dallas for the Nevus Outreach convention. The Nevus Outreach group has been a source of encouragement, support and inspiration for Evan and the family and every two years the convention had been a place of connection and collaboration. So instead it was determined that Morgan was old enough and mature enough to travel alone and represent Evan and the family at the conference. Monday also saw Pixel leave for a week of more intense training while travelling to Tennessee with Tim and Katrina. And Evan’s wish for a Lemon tree in his garden had been heard by Aunt Ginny and had become reality.

Evan’s schedule started becoming more and more typical of the teenagers we all know and love. Stay up late, get up late, lounge around till the evening party and then start again. Tuesday saw Evan’s more focused effort to embrace a schedule of living life the fullest possible for him; it might be that the near death experience of Morgan, mommy, Meg and Ginny with a faulty instant exploding Roman Candle on Monday night was the trigger, but we may never know.

Over the course of these events, a new friend had found Evan. Mr. Wayne Wall was introduced to us by neighbors Bobbie and Roger. Since we had met Wayne, he had brought raw materials, taken away trash, left us the use of a medium size tractor, made lunch for the entire crew on Saturday, and persuaded a couple of his employees to share their paver laying talents. On Tuesday afternoon around 3:00 pm, Mr. Wall asked if Evan might want to see the fireworks that night in a prime location with prime access.

Around 5:00 pm Evan said he would like to see the fireworks. At 6:00 pm, Gene and Jack, the carpentry crew from Saturday showed up to add the doors to the under-deck space. At 6:15 pm Evan comes out onto the back porch and watches Gene and Jack work. At 7:00 pm Evan walks out of the porch, down the steps and up the walkway toward the firepit. What happened next is a beautiful moment.

Dad meets Evan in the garden. Evan asks about who had done what pieces of work. By this point over 50 volunteers had worked on various phases and projects. Dad explains each of the completed phases and recounted who had done what work and how Evan had been the inspiration for much of the work done, and that while each of the volunteers had been thanked for their efforts, each of those volunteers had given thanks that they had been able to participate. Dad exits stage left for a 5 minute consult with mom on arrangements for fireworks transport. Dad returns from stage left to find Evan sitting in a chair, eyeglasses placed carefully on a table and his head in his hands. Evan was crying quiet sobs. When asked what he was crying about, he replied, “I can’t believe all these people gave so much love”

The fireworks were awesome and the access and egress were better. After getting home and falling asleep for a couple of hours, Evan awoke at 2:30 and started to engage dad with this question, “ Hey Dad . . . When am I gonna get better?” WOW!!!! Possible answers – 1. You’re not; 2. The doctor’s don’t know; 3. In God’s timeframe? It’s not like parents over the ages have not been faced with the same question whether the ailment is a cold or the flu; a twisted ankle or broken arm; even perhaps Chicken Pox or Measles. But from a person facing cancer let alone a case determined to be without a cure within the scope of modern medicine.

It would serve no purpose to rehash the internal monologue that determined that the first answer given, however well intentioned, was not worthy of the depth and intensity of the question. But an internal argument ensued and it was decided that a more forthright and a more engaging direct answer was the more appropriate course. The next hour was filled with personal references to injuries, illnesses, recoveries and healings. These touchstones were interweaved with the reality that healing was not so much perfecting what is broken, but coming to a new place of balance and appreciation for the remaining gifts allowed us to accomplish, feel and do within the patched framework that our bodies become over time.

From personal the conversational became spiritual as Psalm 23 became a road map of discussion from good decisions and intentions based on sound instruction leading to the inevitability of walking in the Valley of the shadow of death. That journey at times must be travelled by ourselves, but we are never alone; there are always people and signs pointing us toward the finish line and praying and cheering us on toward completing the race.

And finally we came full circle in our early Independence Day conversation to a family favorite poem:

Footprints in the Sand

One night a man had a dream. He dreamed he was walking along the beach with the LORD. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand, one belonging to him and the other to the LORD.

When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.

This really bothered him and he questioned the LORD about it. "LORD you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me."

The LORD replied, "My precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you."

Evan’s conclusion, “Can we put that in the garden?” and a 3:30 am FB message was sent to a family friend at Cape Fear Marble and Tile in Wilmington, NC. And this poem is being laser etched onto black granite markers that will help guide travelers down the curving path of life toward the destination of peace. And after a little more sleep, that’s when the fun really started.

Evan’s daily schedule really changed on this night. Every day when he wakes up, he comes down stairs and sits on the back porch swing waiting for his dad to see him. This is dad’s cue to stop working on the garden and start getting ready to drive. Evan’s never really sure where he wants to go, except that it is away from the house. He will rest in the garden intently observing people and the action, but most of all he wants dad to stop digging/paving/planting and get a new shirt on to be presentable to the world.

July 4th trips were taken to the bookstore for a two hour read followed by the movie theatre and The Amazing Spider-man, and on the return home a revelation was shared – Evan thinks that his home is like Krptonite, and so long as he can get out each day his mind will win out over his body. So on another day it is a local mall and Best Buy, or the next day after - Best Buy and a different local mall. Two nights ago it was to see the cooling tower of the nearby nuclear power plant at sunset, or yesterday a 10:30pm trip to McDonalds for an Ice Cream cone.

What is a miracle? And how would we recognize it in this modern world of requiring scientific process for proof? I don’t have the answer to this question. It is not as if Evan has been touched by a curative wand. He still does not eat enough to gain weight as his self-described ‘bony butt’ hurts when sitting on for any length of time. But his pain is in a self-managed state and he is as clear, focused and engaged with his life as he has been in months. To have Evan voluntarily walk out of the pharma-fog and spend quality time with us is priceless. He even came to the airport to pick up his sister, and then sat down at the dinner table with everyone.

And to end here would be a decent place to stop, but there has not been enough cynicism at the establishment, nor praise of the actions of those select few who understand the meaning of the words service and community.

First the praise for the staff of our local Community Home Health and Hospice who braved the 100+ F temps of Saturday to come and dig holes for trees, and paint rafters for the pergola; And there is adult scout extraordinaire, Blake Ball, his son Will and wife Denise who worked through the heat to get the frame work and foundation in place for the pergola (Italian word for un-decked roofing rafters built for shade and vine propagation, aka arbor attached to house); Alongside these amazing people we had more amazing people, Christie, Rich, Steve and Greg. Each person worked to best of their ability in oppressive conditions, it was awe inspiring and humbling to behold. And that’s before we get to the dancer, artist and cancer survivor ambassador – but that will be another post.

But the event to beat all others has revolved around oxygen: Supplemental for Evan, critical for life, previously prepositioned for ease of use and access; until we went to use it on the go. Evan learned about the tank, learned about the pressure guage, learned about the regulator and device attachment point, and how to open the tank with the tank key that had not been provided. 4-5 trips to the house, no less than 6 phone calls, and no one thought to check to see if we had the one device necessary to open the tank allowing oxygen to flow. Now since dad was a former paramedic he realized a pair of pliers can do in a pinch, but tank manufacturers and regulator manufacturers frown on using the wrong tool for the right job. So a Sunday night call was placed to the afterhours call center: Do not call to see if everything is okay! It is not, just send someone out with the tank key ASAP! This is not life and death, it is a fundamental customer service failure that can only be remedied by action; not hand wringing and empty apologies, although base groveling is looked upon with some degree of mercy upon error correction.

Monday morning:

Call 1: ”I see you didn’t need me to call, but just to get the tank key to you. Right well, so sorry, can’t understand how this happened, we’ll have someone out there today.”

20 min later Call 2: “Since you haven’t needed it till now, could I mail it to you?”

Unfortunately for the sake of decorum we are unable to relay the other side of Call 2, but it wasn’t pretty.

Thank you for your continued thoughts and prayers for Evan and our entire family, we cherish them and hold each of you close to our hearts. To check out the Evan’s Garden and its progress, news on the Music Concert, and other information, go to

Saturday, June 23, 2012

Dear Diary - i can't breathe . . .

Wednesday June 20, 2012 – Winter Solstice, I think

Today was not a good day. It could have been worse, although I am not sure how. Late in the afternoon the pain really started getting to me, which really sucked because I wasn’t doing anything but watching TV. First it was under my breastbone, then I thought I had a bladder infection and finally the hammer to beat all nails, my back started to kill.

So I took a shower to try and let my body reset itself, besides it would soon be time for my pain meds. But as I got out of the shower I suddenly realized I couldn’t breathe. No way to take a cough, no way to take a deep breath, the best I could do was pant like a dog. So with a towel over my shoulders, I collapse onto the bed on all fours and I must be breathing 100 times a minute, and I feel like dog s^&*! Pain still beating away, can’t catch my breath, and mom looks like she’s seen a ghost, but she goes and gets dad.

Dad’s not the brightest light bulb in the box, but he’s faithful like a Labrador Retriever, and he kneels beside me and asks the dumbest question, “So, how are you doing?” what is blind as well as stupid, I’m breathing like a racehorse after a mile and a half, I look like a scarecrow, I must be white like snow, and he’s asking how I’m doing. Too funny, if I wasn’t struggling to get my breath, I’d be ROFLMAO. My measured response, one word at a time between pants, “Something went wrong today” I then tell him about what happened and over time I start to breath more slowly.

So now my pain medications are being increased to three times a day, and my dad set up this oxygen machine. Now call me stupid, but isn’t there oxygen in the air, what the heck is this machine gonna do except push air down a long tube into these two hard prongs that are supposed to go in my nose. WTF, who designed this monstrosity of masochism. This is gonna work like a lead balloon. I want to say, “Dad are you F-ing Kidding me, this makes me feel like a prize pig with a ring through its nose, certainly not better” I don’t know if he can read minds, but he came up with a different technique, seems fairly bush league if not down right wrong, but those Puff the Magic Dragon nostril hooks are not going back in my nose. No sir!

By bedtime I am no longer panting, and I think I’ll sleep better if I can remember who I am and which elbow is supposed to sing the National Anthem before prayer time. Drugs are so double edged, but I’m too sleepy to discuss this anymore.

Thursday June 21, 2012

Morning meds come too early when I am not sure if I slept. I really wish people wouldn’t look at me, it’s just so annoying to be the center of someone else’s attention when clearly they have their own issues that they should be dealing with before me. As I drifted into that morning medication stupor, I wonder why more men don’t sing Happy Birthday in a falsetto voice with a blue tint.

So it half past noon and dad has the temerity to tell me that people are coming by the house today. Can’t he see I’m in no state for visitors, I have no pants on. Next thing I know, the smoke smelling oxygen machine has been replaced – nice! I sleep some more, then that good old Lab comes with those puppy dog eyes and asks if I want to come see the nurse or whether the nurse should come to me. Once again, sharp as a tack! Can he not see I couldn’t stand to save my life? What makes him think I’ll take the stairs, besides his rendition of Happy Birthday sucked. Pants on, and enters the nurse, possibly named Cratchett, she starts apologizing for taking my blood before she’s even put on the tourniquet. I’m not sure which Cracker Jack box held her license, but with the deft touch of a butcher with a bandsaw she managed to get the needle in and get the blood out. Did she not understand I didn’t want her apologies for taking the labs, just do your job, do it quickly, efficiently and then GET OUT OF MY SPACE, AAARRRRGGGGGHHHHHH!!!

Old Yella went out for a run, and came back with more instruments of the inquisition, not just prongs up the nose, but a full mask of suffocation. Sweet, I can go out screaming into the baffling effects of a soft plastic mask, If I could actually get a decent breath. Oh yeah forgot to mention, gained some weight this week, and temp was okay. Pulse Ox whatever that means was in the low 90’s and my pulse rate was above 120; but I wasn’t gasping for air. Too bad I’m not in the army, ‘cause this sounds like a time for a good Huahh! Or some such other warcry of victory.

I have to say that the oxygen does seem to ease my stress when certain individuals, specifically the devil spawn that is ‘my’ dog. Tonight I shall sleep soundly to the hum of crickets warbling Aida in the Key of G, at least that’s what I think the oxygen machine sounds like.

Friday June 22, 2012

Not sure what happened today, but it just kind of went by in a sedated shallow breathing haze. They only timed I felt fully in the present was when ‘my’ dog, spawn of Satan, Pixel, Hound of the Coleman’s entered my space one too many times. I lost it, couldn’t breathe again, just panting through tears of anger and frustration, no position of comfort, just hate and hurt, haze and hack. The Lab got angry and is yelling to get my attention, “Put on the oxygen” he yells, “It’ll make you feel better”. “No it won’t I yell back defiantly”, until out of breath I relent as he and my mom leave me to rest in the dark.

I love my mom so much it hurts, and I hate pushing her away, but I can’t stand her looking at me. I can’t stand looking at myself anyway, bad enough I’m a teenager, but I look like some B movie zombie or a prisoner from a genocide camp. She just wants to help me, I know this, but it just hurts so much to see the pain in her eyes as she reaches out to touch me and try to bring me a comfort that I am not prepared to receive because my defenses are so wound up.

Sleep is easier and easier, and sometimes I fight between wanting to fall into fitful pharmaceutical sleep and a fear that I won’t wake up at all. Weird, huh! Good Night Diary – See you tomorrow?

Friday, June 15, 2012

Don’t Cry for Me Argentina!

On July 26, 1952, Eva Peron succumbed to cancer after a long battle of surgeries and experimental chemotherapies. She was only 33 years old, but had become a political icon and champion of the underprivileged. After her death, the country of Argentina came to a standstill, and so powerful was the imagery and vision she had brought to her people, that for almost 20 years the military dictatorship (that had arisen in the vacuum she left at her death) banned any private pictures be kept by any any Argentine citizen, and her body was shipped to Milan, Italy so as not to be a rallying point for the impoverished masses.

Andrew Lloyd Webber and Tim Rice reintroduced the pop culture star status to the young champion of her country in the musical Evita. 60 years later a 13 year old is about to succumb to cancer, and we know that his passing will bring tears, and sorrow and heartache that will appear unfixable. But this is where we turn to what both Eva and Evan desire. Don’t Cry. Know that you are loved just as we know you love us. Life is a series of dichotomous choices: Love – Hate, Anger – Remorse, Happiness – Sadness, and of course Life –Death. Not often considered are the opposites of Fear – Faith, Hope-Despair, and Joy –Depression.

Our approach to Evan’s life has been to seize hold of the former and leave the latter to later. As we look at this summer there is definitely a nervous anticipation of a homeowner approaching the terminal payment of a balloon note. But we cannot know the timing of final breaths anymore than we could have predicted that you would be reading this note. But we know when the first tears were shed, and we know when the first laughs were heard; what we ask of you is that you try not to hold onto the tears, but revel in the smiles and the laughter of life. You will never know when they will end so long as you seek to live your life to the fullest.

We have heard the questions asking about Evan and how he is handling this situation. We have heard the questions about how we are handling this situation. But now we must ask you how you are handling this situation? When you see us, do you avoid eye contact or is eye contact tinged with pity? Are we worthy of a smile and memories of joy, or will you merely see an inevitable end of life as a tear rolls down your cheek?

In the past 2 weeks we have felt that the hospice model we have been dealing with is a cross between the Key Stone Cops and the inevitable run around of a 3rd Party Warranty. It has been a tragicomedy of Shakespearean proportions. As of this afternoon, we will have seen 8 people in 7 different visits of no less than 2 hours each. Our two highest priorities have been to ensure blood draws at home so that energy for out of home activities can be reserved for more fun things than a 3 hour commute to UNC; and to ensure that there is a counselor available for Evan’s 87 yr old Grandfather, Rev. Pat, who has lived with us for almost a decade.

It seems amazing that so far we have answered the same questions on the same distressing subjects so many times that it seems there is just a fundamental attempt to desensitize us to the impending death of our son by repetition of the obvious. Best question every single time, “So how are you dealing with this?” It appears as if there is no communication between staff, no universal information update, or that the little computers they carry around have no way of sharing information with each other. This is before we get to the question of whether they have actually read up on what Evan/we have been dealing with for 4+ years. I suppose the ongoing referral to read this blog is too much to fathom.

Morgan, our amazingly gifted and insightful daughter, has pointed out that the cool, calm and composed parents are not what anyone outside our family expects to find. Those people who have to visit us for professional purposes are often so distressed with our impending loss they are rendered discombobulated, at sixes and sevens. So much so that our last visitor fell back on classic religious platitudes, and as a result she was almost shown the door. She was saved by the return of a mischievous beagle who so rattled her cage that she left of her own account. (18 hours earlier, Snoopy had jumped our perimeter fence and chased after a deer. He is 13, the fence is 4 ft high. It was a phenomenal event only topped by his mournful baying at the stranger saying, “God only gives you what you can handle”. We are guessing that the new pair of underwear needed by our latest visitor indicated that God may have exceeded her capacity at that moment.)

Note Bene: Every person who comes to see us/Evan has only the best of intentions for all of us. Evan is not in any pain beyond what he has tolerated day in and day out for the past 4 years. And the provision of human foils and foibles for the verbal rantings of the writer is truly a gift from God and provide ample evidence that life must be lived in the moment; and not with bated breath for the inevitable but unknowable cataclysms that litter life like a mine field.

Next point of aggravation/humor: The impending need for oxygen therapy. Many people who enter hospice, that is the period of time in which they know they will die, require some level of supplemental oxygen so as to best function. Many people would include the aged or adult infirm; Many people would not include vibrant teenagers who desire to live life to its fullest in a mad thumb your nose at the devil sort of way. So when a trend of declining Oxygen saturation was noted, a simple inquiry into the simplicity of establishing oxygen therapy was met with a standing order for oxygen for hospice patients. Great, wonderful, no hassle, just like that it would arrive the next day.

Fast forward – Lively active teenager (Cancer patient or not, given enough anti-depressants, McDonald’s Chicken Nuggets, and Dr. Pepper you’d be lively too) needs to get out of the house, has trips to Dallas and Bethesda planned, with a week at Victory Junction Cancer Camp (Play Nascar, boating, fishing, archery, horseback riding, etc – No one talks cancer – Camp is fully Medical staffed) And certain questions come up. How do you take Oxygen to Dallas? How will Evan get around camp? Will there be enough oxygen for a car ride to Bethesda?

So the oxygen arrives in the form of an oxygen concentrator. The small unit weighs 35 lbs, plugs into the house electric, and is about as portable as an anvil. It is the ultimate in house arrest gear for the dying. Yes sir, you can live on all the oxygen we can get you within 50 feet of this little ball and chain, but that is the extent of the fullness and quality of the life you have left remaining. So we find out about a portable battery operated 3lb unit that will go anywhere including airplanes. But the oxygen company is not allowed to deliver those units to hospice patients – too expensive, doesn’t fit the patient model, etc. Yeah there’s gonna be a battle. But you can already guess who is gonna win that one.

And now we arrive at the ultimate irony of the last 7 days. When we first came to North Carolina we sought out a gerontologist for Rev. Pat so that as he aged he would have the benefit of knowing his doctor as he approached the end of his life. And he found an amazing doctor who he will sit and chat with about the most fascinating subjects. And you’ll never guess who the medical director is for Evan’s hospice provider?

The answer was here all the time

I love you and hope you love me

Don't cry for me Argentina

Don't cry for me Argentina

The truth is I never left you

All through my wild days

My mad existence

I kept my promise

Don't keep your distance

Have I said too much?

There's nothing more I can think of to say to you

But all you have to do is look at me to know that

Every word is true!

Do not cry for us, do not cry for Evan, do not cry for yourself. Cry for love, cry for happiness, cry for joy. But above all else Live your life today and share the joy of the love in your heart with all who you meet today.

PS. Regarding the humorous paragraphs above taken at the expense of a number of hospice workers. It is only fair to publish the retractions and errors. It is essential to remain humble and the writer put pen to paper too quickly, but for the sake of literary license and continuity they remained in the body, but will hereby be remedied. First, the chaplain who came today to speak with Rev. Pat was ex-Army and was the model of both efficiency and compassion as he not only took the time but also the interest and initiative in the need for a portable oxygen concentrator. Second, the ‘Dog’ lady went back to the office and took up Evan’s cause to maintain his independence and mobility arguing for portable oxygen.

That would normally end the situation, but it turns out they sent portable tanks that cannot be taken on airplanes. Unfortunately, the column inch maximum has been reached otherwise the proposed alternatives would cause you to weep from the length, the frustration, the humor and the sadness of the resulting conversations. Perhaps next time.

Monday, June 11, 2012

D. N. R.

Line of the Day: “So I gather you’re not happy about entering hospice”

This was the response by a friend to the angst that had been share regarding the nature of the hospice economic model as it related to Evan’s situation.

This is one of the hardest blog posting that has ever been written. . . .ever. Sometime earlier this afternoon, the paperwork was signed entering Evan into the care of a local hospice organization. The papers were almost an inch thick stack of medico-legal mumbo jumbo, the gist – please die quickly, with the least amount of fuss, and we’ll be there to make it as painless as possible while maximizing the profit from your dying.

WARNING – WARNING – WARNING. Grief has been simplified as a five stage model that is neither regular, balanced, ordered nor sequential. Along the way the grieving person will experience: anger, depression, bargaining, acceptance, and denial. At the juncture of the writing of this post, the writer is experiencing ANGER at the DENIAL of compassionate service by hospice providers due to an economic DEPRESSION and a failed BARGAINING process on the behalf of those they purport to assist. And Evan is left to ACCEPT the realities of a red tape jungle that his parents seek to hack a path through to daylight. Clearly this is not the classic Kubler-Ross model, but when has this situation ever been classic?

But let’s push the rewind button and go back 4 weeks to the last set of scans. It was determined at editorial review that the full extent of the results of those scans would be revealed in a more deliberate manner as we all came to terms with the realities of what we saw in the images.

The images revealed not only a larger main tumor that was encroaching on Evan’s spinal cord but multiple metastatic tumors in multiple lymph nodes in and throughout his body and encircling his neck, additionally there were 30+ rapidly growing tumors in all fields of his lungs and no less than 5+ metastic tumors in his skeleton. In the 10 weeks since Evan had stopped taking the braking chemotherapy, the disease had gone into overdrive.

The images painted a picture of death. The choices were stark, brutal and devastating: Treat the disease to save spinal cord function and reduce pain vs. seeking out some other untried/untested guess; followed by - Should Evan die while suffocating from extensive tumor growth in his lungs vs. dying from starvation?

And all these decisions had to be made against a backdrop of clinical depression and despair on Evan’s part. Being the brightest light bulb in the box has not necessarily been to his advantage as he has reached two conclusions: He will live the remainder of his life in some degree of pain that has been his constant companion for the past 4+ years; and that he no longer had any confidence in any proposed treatment after so many failed attempts by the medical establishment. All he knew/knows is that his parents love him, and that he doesn’t want to hurt them, nor be seen as less than worthy of that love by quitting. He just wants to be a good boy and live a normal life.

So going back to the original line of this post, no we were not happy about entering hospice, nor do we know anyone who is happy about hospice; excepting those who have given up hope on life and seek the warm comfort of a dark enveloping end to their misery and pain. Please see Dr. Jack Kevorkian.

There is as hard, cold reality that is shied away from by all people, but especially those of us fortunate enough to have lived our lives entirely in the first world: Life ends in death. For all the religious and spiritual processes and rituals, not one of them can alter the ultimate physiological reality that our earthly lives are finite.

As Evan’s caregiver’s we needed to retool, reprioritize and rethink our roles, purposes and plans. We do not yet know the excruciation of parents surviving their child’s death, but the death of our dreams has been desperately painful. We had to shift into total support and service mode. A 13 year old young man is not just a child to be told what to do; they are a young adult with major psychological support needs before one throws the cold, wet blanket of impending death over their shoulders. Our call is to be there for him to meet every need he identifies.

Evan does not acknowledge the grave nature of his reality, but he knows. Evan does not talk about disease or dying, he often just doesn’t talk. Evan does not revel in his increasingly gaunt figure as he grows taller while continuing to lose weight, he shies away from seeing those who knew him before or wears disguising baggy clothes and sweats. His smile when it comes will still light up a room, but there is a painful response from that room as they look past the grinning teeth and see the hollowing cheeks and the taught cords of his neck.

And as people grasp the full nature of what is happening, the next inevitable question arises: How are you (the caregiver/parent) doing? Somewhere in recesses of your mind I would ask you to conjure up the elements of Greek mythology, specifically related to death if only because the imagery surrounding the transition between life and death is useful for relating the changing role of Evan’s parents from champions of the fight for his cure to becoming the most supportive and reliable people in his journey toward death.

A brief primer: Hades, a devilish God thrown out of Olympus by Zeus is doomed to rule the Underworld and its inhabitants, the dead. To reach the Underworld, the dead are transported across the river Styx (River of Hate) by a boatman, Charon (typical imagery presents this character as the Grim Reaper) who is to be paid 2 coins otherwise the dead were destined to walk the world in hate as ghosts never achieving any semblance of peace in the life to come.

The concept of Rest in Peace derives its origin from such mythology, and as a general rule humanity seeks to grant the dead the most decent passing from the land of the living to that of the dead as seen in our laws, customs and mores surrounding the sanctity of the dead human body. And so people, family, and friends will do all they can to ensure that the boatman is paid his two coins so that our loved ones are granted safe passage over the River Styx; what we are not prepared for, what we cannot imagine, what we most assuredly run from is having to take on the role of the boatman. But that is now our role.

As Evan’s parents we were helped in our transition to these roles with the capable caring and comforting words of wisdom of all the members of Evan’s treatment team at NIH. It was no wonder that Evan prefers to be treated there than anywhere else, even in death there was a continuing element of hope. And so we come full circle to the title of this post. DNR does not stand for Do Not Resuscitate as much as it stands for Death – No Regrets.

Monday, June 4, 2012

Cancer Survivors

The first Sunday in June has been declared National Cancer Survivor Day. For 25 years this day has been set as a celebration of life. Who declared it so? We don’t know. Why was it declared so? We don’t know. Does it really matter? H E double hockey sticks, yes.

And for a small digression in the celebration of life: the origin of H E double hockey sticks. At some point in the past the extended distaff side of Evan’s house has felt that the use of the term ‘Hell” in actually naming the place of eternal resting place of the damned souls of this world was tantamount to high blasphemy and use of the actual word could potentially condemn the user to permanent reservation to this warmer retirement locale. In deference to the concept that a vulgar mouth is an uneducated mouth and given the propensity of the writer of these posts to avoid the difficult subjects, it has been deemed necessary by the editorial board to both use H E double hockey sticks and to then explain what that means and how it came into use.

All of the above is a simple summation of the fact that Evan is very much alive today, that we are all cancer survivors of some measure, and that we should seize and celebrate life to the fullest at every opportunity. Each day thousands of people will succumb to cancer, but for today as you read this you are, and we are, surviving. Surviving not just by living, but by living this day to the fullest of our ability as we seek to lift the burdens of those around us.

One post three years ago detailed that each span of time had the opportunity to render good situations, bad circumstances, and outright ugly results. For the sake of repetition, it was decided not to reuse the title, but the last week in Evan’s life is best framed in those simple terms. For any possible excess angst related to the ‘bad’ section to be discussed, we advise the audience to look away, cover your ears or enjoy the juicy descriptions of some of the relative stupidity that confronts Evan on a near daily basis. Please remember that ignorance can be educated, but stupid is a lifelong condition.

For the good: Evan has had a couple of his best days in the past 2-3 months in the last week. He has moved from one small meal a day to 2 plus snacks, as a result his weight may now stabilize around 88 lbs. He has voluntarily gone foraging for food, and ventured from his self-imposed seclusion to active engagement of people to facilitate getting things that he wants. Most importantly from the caregiver standpoint is that he has re-entertained the concept that he was in fact borne for nine months by his mother and not hatched under a rock or via incubator. This is equivalent of nothing short of a breakthrough in the Israeli-Palestinian conflict, and given the general nature of the mother-son teenage relationship this breakthrough in such short time is being considered by the Nobel Academy committee for both World Peace and Medicine.

The week was capped by a successful hunting trip in the local Lego store with the pelts of 5 new models being prepared by the taxidermist for display. The trip was made especially memorable by the presence of Amy Arundale, a family friend who just happened to be in DC for the day and stopped by with hugs and kisses sneaked past undeclared at the NIH border patrol and customs agency.

Claims for the source of these improvements might have come from the end of radiation therapy, new dosing of anti-depressant, better parenting, tacos 4 nights out of 5, dumb luck or divine intervention. But since Evan isn’t in a research study anymore and is just in the battle for his life, no one cares, most especially him. Sometimes life is just better, and you are glad for that just because it is.

And now for the bad, knowing that you have been forewarned and forehumored so that you do not pick up the device you are reading this on and throwing it the nearest wall/bus/asphalt surface. It should be a foregone conclusion that when a family is faced with preparing for end of life decisions that everyone would seek to be as helpful and supportive as possible. And for the most part they are; however, for your amusement let this be a first forum on some of the inanities that we have faced while approaching hospice through our soon to be ‘prior’ North Carolina medical gatekeepers.

Hospice is intended to provide patients and their families support at the greatest time of need as a potential end of life event becomes a present reality. However, some people believe that this is Jack Kevorkian territory in that if you ask for hospice care you should want to die and as a result should if not doing everything to take your own life, you surely shouldn’t be doing anything to prevent it happening as soon as possible. It has been shared that because Evan will continue to take chemotherapy drug to facilitate the highest quality of life, and because this chemo (like all the others) might actually save his life, he is not eligible for hospice care. In the parlance of the day, WTF?

So as we interpret this interpretation of the rules, if you are seeking hospice care and you have a headache, use of aspirin would eliminate a person from consideration because it might stop a potential heart attack. There is a very popular tweenager game called ‘Would You Rather . . .?’ where two diametrically opposed situations are presented as extremes and you are asked to consider which you would prefer to do. One such question: Would you rather eat an 1/8th of an acre of grass or drink a 3 ft by 3 ft by 3ft puddle of rain water? Our question from the hospice: Would you rather Evan face the consequences of 30+ tumors in his lungs or . . . ? Does it really matter if you deny the person the dignity to die in peace and instead force them to suffer as they go? Arrrrggggghhhhh!!!!

Assuming you still have a functioning e-reader at this moment, we shall arrive at ugly, or the funny, or the downright – are you kidding me? Late Friday afternoon a series of major thunderstorms ravaged the Washington DC area, and NIH was not unaffected. The Children’s Inn which sits on this approximately mile square facility has been Evan’s home away from home for 7 of the last 10 weeks. During this time the Inn has been undergoing a series of improvements and upgrades including the installation of new carpet and Google TV in each of the resident’s rooms. Additionally, the exterior playground is being prepared for a major upgrade this summer.

The playground design team, KABOOM!, only does one playground a year because of the scope and intensity of the design requirements for each project they undertake. At The Children’s Inn the design process had to accommodate infants to adults in a manner that anyone regardless of circumstance might find some measure of play, peace and life enjoyment when they are in the playground. This is no small order for the healthiest of populations. On Wednesday night the design team came to dinner and in an interactive presentation revealed what was going to happen on the back hill behind the Inn. There were balloons and bandanas, markers, paper and ideas were shared. Many of the kids wanted to have some form of water features in the playground, but due to design/health limitations none were going to be added, until . . .

In an effort to avoid flooding from the hill behind the Inn, the playground was being updated to among other things include a large storm drain for runoff that had plagued the Inn in the past. As terrain modifying construction had already begun, the storm drain in place, there was a desire to reduce the silt going into the drain, so it was covered with a fine mesh, while the rest of the hill was covered with plastic to also reduce the runoff. This had the effect of creating a pool outside the back windows of the main room of the Inn. As the rains came down, and it did come down in torrents, the rainwater runoff created a 4 ft pool of rain water.

The NIH Fire Department came and pumped out the pool, the maintenance man went knee deep into the remaining water and uncovered the storm drain, which when not covered, worked quite well. And the residents of the Inn had quite the family night watching an emergency unfold before their eyes as they gazed on from the balcony overlooking the great room flood and stream of 2012 at The Children’s Inn.

What does all this mean? It means that so long as you can see life as it is lived, you can celebrate today. There is an adage that many goalkeepers and weekend warriors ascribe to, “The pain lets you know that you are alive” but if all you have ever known or all you have come to know is pain, you never get to know you are alive until you smile until your heart is warm or laugh until tears run down your face. Yesterday we lived, so today we are cancer survivors. How about you?

Thursday, May 24, 2012

Pepperoni Pizza Please

Yesterday afternoon a group of four people met to discuss Evan, his disease and decide upon a course of action.  It was 90 minutes of discussing Evan's health, mental status, medications, past results, and location, location, location. While Evan has been a valued member of his own treatment team, this time he sent a delegate beside his parents to represent his views. Evan's war right now is being fought on 2 fronts: Depression and Pain; and while he is making good progress on both he is still in a dark place.  What follows is a summation of that discussion.

Love, Hope, Peace and Joy all bound together within the complex web of Faith. To a certain extent we are able to wrap our mental fingers around the intangible concepts of: Love – commitment to placing a higher value on the life of another than on our own; Peace – a place of quiet confidence from where we are able to face the tough situations and decisions while being comforted that whatever the choice the outcome will be acceptable; Joy – to hold a position of satisfaction of purposes fulfilled regardless of or in spite of any mental or physical status; Faith – being confident in what we hope for and assurance about what we do not see.

Hope is much more difficult to frame. We know how it feels when it’s present, and we know what it looks when it isn’t. But if we presume that the presence of Hope is yellow and warm, then its absence is cold and dark. When Hope is realized, it is no longer Hope, it is Joy and Peace and Love, and our Faith is kindled by its realization; but when Hope is absent or worse robbed from us, the depths of cold and despair know only one true end – death.

And so it is easy to see that as one holds Hope in a Faith, as the origin of that Faith is vindicated by both the presence of Hope and the results of its maturing into Love, Peace and Joy realized. If one holds fast to Science above all things, then one might wait an awfully long time for the meaning of life to be calculated through an equation to be 42. The scientific process is relentlessly slow, a painstakingly boring in its incremental march toward universal knowledge. In Evan’s case there remain options, but the no remaining options have a scientific basis for success, it has come down to an equation of the gut instinct of the Doctor most familiar with the disease process that afflicts Evan.

For those who look to the Faith of their fathers for a medical intersession of a miracle there has been an apparent lack of miraculous response from heaven. No sudden healing, no command to get up and walk, no shrinking of tumors, only a terrible feeling of hopelessness. We have seen it first hand in the overwhelming of Evan’s ability to remain resilient in the face of a disease that continues to rob him of nutrition, oxygen , and the very will to live. Until . . .

Until the medical community sets pretense and data capture aside and looks to holistically treat out of compassion born of humility. Until cousins sit and chat about things that interest Evan, not curious to find out what interesting things have been happening to Evan. Until a surrogate big brother plays Lego for the sake of playing. Until an Uncle just sits and chills expecting nothing but that time should be allowed to pass. Until Evan read cards from 25 states wishing him courage, good tidings, love and encouragement – “It’s good to read such nice things, it makes me happy”, says Evan.

Hope is not found in medicine and science, but medicine and science can be parts of Hope. Hope is found in not accepting death as a forgone conclusion, but living life as it is today. Hope is not found in past successes or failures, but in realizing that the journey made smoother by learning is a path toward Hope. Hope is not found in a new drug, a current therapy or a future treatment; but a new drug working in concert with present and past treatments brought together in a novel approach does offer hope.

But the truest Hope is found in the combined hearts of all who have known Evan or have come to know him by these posts; it is in your hearts that you hold out all the Love, Joy, Peace and Faith toward him in the Hope that he will get well. As this process has stripped away reliance upon science and the crutches of formalized religion; what has been left is the art of medicine in a seemingly arcane method of weaving knowledge with instinct woven into a tapestry of love and compassion that has been held together with the threads of your thoughts and prayers.

Time has never been on Evan’s side, and it seems that this adage remains true. But we would ask you to consider this reality: If time marches relentlessly toward a future, a future Evan wishes to embrace; should we not engage the time we have with the living of life rather than the avoidance of death? Do we Hope for a future without death, or do we Hope to live Life to the fullest? Does Hope even care about such large and ponderous existential ideas; or is it simply concerned with a desire for pepperoni pizza for dinner tonight?

Thursday, May 10, 2012

A Picture is Worth a 1000 Touches

It would be safe to say that there has been resistance to writing this post for some time. But the images that were taken yesterday were reviewed today. Evan’s weight loss has not been caused by nausea or lost appetite, but by the robbery of all nutrition and energy by the tumors in his body. Any Registered Dietician will tell you that a 4000 calorie deficit/day while exercising to lose weight is unhealthy, but to lose a pound a day while doing nothing points to a much bigger problem. That problem was painted in stark terms and images today. Not only had the main tumors grown together and bigger, but Evan’s lungs lit up like the neighbor’s spruce fir decorated for Christmas. And to add insult to injury, the main mass in his back has started to encroach on his spinal cord in a speed and manner that is of primary consideration.

The nightmare doesn’t end, hope is not restored, stark terror runs coursing through mind and body when the plan of action is revealed. Stop all chemotherapy, start radiation oncology to attack the tumor invading his spine, seek to restore balance and quality to Evan’s life by choosing the battle to be fought while suing for peace with the Grim Reaper. There are other possible treatments, but the spinal cord must be saved first and that will give time for all the distant metastases to continue on their destructive paths. Time is definitely not on our side to win the war.

Evan has fought a long brutal war of attrition with his invisible foe. He has been a valiant hero and a beacon of courage and strength to all who have met him; and at some basic level he must be given the dignity of ending his war on his terms, and that is what we will struggle with next. With all the tough love recently over eating and drinking enough, it would be fair to say that the paces Evan has taken of recent have been not to let his family down , afraid that we will not love him as much or think him a failure. Nothing could be further from the truth, but teenagers can be tricky to deal with. All of the above came together in 10 tortuous minutes while Evan was talking with his psychologist.

Therapeutic touch is an accepted reality amongst many medical practitioners; however the art form is used by a seldom few who practice day after day to get it right so to convey support and not pity, calm and peace rather than stress. There is in the midst of these unsolicited touches an appreciation of intent that is rudely whipped to the side by the revulsion and disgust of the patronization of the ordeal. There is a profound claustrophobia that closes in like an English fog in winter that occurs when such difficult information is shared. Support by an unfamiliar touch of an unknown pitying person is rejected in favor of the need for space, air and a few cleansing breaths.

On the way to our next and now emergent appointment the chance to breathe and get bearings is muted by yet another round of questions by a new set of staffers in a new discipline. Yes, Evan was immediately whisked to Radiation Oncology where after bureaucratic badgering, he was fitted for radiation treatment, rescanned and marked for treatment. Tomorrow begins a new treatment, hope is held in an experimental T-Cell vaccine that would be cultured from Evan’s tissue. That hope may be fleeting if the vaccine team does not feel it can be done successfully, the FDA does not approve, or he runs out of time.

If you would like to mail Evan a note of encouragement,

Evan Coleman
1032 Newburgh Cir.
Raleigh, NC 27603

Wednesday, May 9, 2012

It's Cold Outside

It’s cold outside. It’s raining outside. And we’re hurting inside. We’re fractured and cracked, broken and beaten, and every step is like walking on the glass that was our armor. A beam of light is flashed outside. While a flash of light beams inside us, on the pain that seems to keep us dry. There’s a game on TV, two guys care but cannot speak, But who really cares about the Heat. This is NIH.

Right now, the writer of this post has been banished from the presence of the main protagonist because the sound of eating was too much to bear. 24 hours ago Evan was settling in to The Children’s Inn at NIH, there had been a 6 hour drive preceded by 6 anxious hours. And it seems that anxiety is the only constant companion of anyone associated with Evan. Gone is the joy, the winsome smile, the brilliantly timed one liners; and in their place there is a hollow person going through the paces as he is told to take them.

Disjointed, broken free verse seems so appropriate for sharing this situation. Please pardon the lack of cohesion. Evan spends his resting time in a modified downward facing dog pose using his head and knees as fulcrums while arching at his waist, face down in his pillow of choice, butt up in the air in some effort to moon and disrespect anyone who would criticize this position of comfort. When action is required it is balanced between aimless pacing, scalding showers or dips into bath water that you could cook carrots in. We are in the best place physically for being in the worst place physically; but you could never tell from the oppressive weight of despair that seems to hang over Evan’s head that is broken by sunshine smiles when engaged by those loving souls who meet him where he is and not where they want him to be.

Evan’s current weight is down to 92 lbs, and weight loss seems to be slowing although this may just reflect that there is little left to lose without major consequence. The scans of today will be reviewed with us tomorrow morning amidst other scans, tests and evaluations. We don’t know what we’ll hear; all we have to go on is our own observations and feelings: Evan is in less pain but has less energy and more suffering from nausea and anxiety. The visible masses have blended back into one large mass that looks like a split Polish sausage under a blanket. And overall Evan’s spirits have hit a brick wall which has a decided wet blanket effect on those closest to him.

Miracle 2012 seems so far away, plans are being made, schedules being assembled and calendars are forthcoming; but landscaping, yard work, art, auctions and music seem so trite at this moment. It is difficult to celebrate life when you have been looking at death for so long. We need some better news tomorrow but the cold icy grip of fear seems to have an unrelenting hold upon our hearts. Evan needs to hear that there is light at the end of the tunnel; whether that light be heaven or the future he does not care he is just tired of fighting. Parents need to hear glimmers of hope that can be spun into a woven tale of perseverance for their son; because the blanket of yesterday is tattered, torn and trampled.

Sunday, April 22, 2012

And the other shoe dropped!

If the number of pills you take to maintain a happy life is directly related to one’s age then Evan is. . .

All the tubes for 1 blood draw

If there is no news, it must mean there is no bad news . . .

For almost a year there has been a status quo that was suddenly interrupted . . .

We hope you have not forgotten Evan, as we were trying to forget that we needed you . . .

These are the false starts of a modern day Bartleby. I’d rather not write this. I’d rather Evan was not ill. I’d rather there was no cancer. I’d rather not . . . Until at the end I am found dead in some thought debtors prison of the mind. Or perhaps I wish to be so inundated with proletariat marketing and fluff I might shrink into oblivion with the masses than try to stand up against the tidal wave of angst ala Winston Smith.

And in a nutshell, there you have it. All the angst, fear and frustrations of 5 years came crashing down upon our family 7 weeks ago. Since then there has been such an overwhelming amount of work, management and care that we have hardly time to eat, sleep or even breathe.

For the new reader here is a synopsis if you are not so inclined as to read the 57 previous posts in this blog: Evan, now 13 yrs. old, was born with a giant birthmark, initially thought to be precancerous, the subsequent testing initiated a cancerous process. 5 years ago a cosmetic surgery to remove a mass on the left side of his back resulted in 1 of 10 biopsy samples to be labeled melanoma. Since then there has been a roller coaster ride of travels, doctors, surgeries and chemotherapies. Those efforts had resulted in a tenuous status quo of minimal clinical treatments accompanied with monitoring scans to evaluate disease progression. On the social-educational side of Evan’s life, he had begun home schooling about 18 months ago to avoid any unnecessary or invasive inquiries by classmates into Evan’s ongoing situation and status. For the past 4 and half years, it seems the only constant companion in Evan’s life has been pain. Pain or discomfort, always present, has moved from place to place in a twisted effort to keep him on his toes.

Flight gear brings flight tales

On the very loud flight line.
At some point in the future, things will once again slow down and a more thorough retrospective review of events in the last seven weeks will occur. For now it shall be a simple timeline of events, comments, actions and travel: March 2nd – 90 day status scans, March 5th – poor scan report, March 6th – UNC treatment center declares they have no further cutting edge treatments and can offer 1970’s era chemo (see poison in dictionary) or palliative care stating, “We are out of options, this will kill him”, but you can always re-inquire at NIH (National Institute of Health, National Cancer Institute, just outside Washington DC). March 7th – Evan spends morning touring Seymour Johnson Air Force Base and getting guided tour of 333rd Squadron in the afternoon Dad reconnects with Dr. at NIH and a plan is initiated for Evan to be screened for new medicine and then to begin treatment by end of March. March 27th – Arrive at NIH, March 28-29th - 10 hour days of testing (MRI, CT, PET/CT, ECHO, EKG, 24Hr UA, etc.), March 30th – First infusion of Ipilimumab (Trade name Yervoy, takes the brakes off T-Cells in the immune system thereby releasing the body’s own defenses to attack cancer cells), March 31st to April 6th – stay at NIH for monitoring, April 6th – home, April 8th – Easter, April 19th – travel to NIH for 2nd dose, April 20th – home for 3 weeks before next 10 day stay at NIH arriving on May 8th.
Trying to use down time wisely

A recent Article in the New Yorker entitled “The T-Cell Army: Can the body’s immune response help treat cancer?” captures the essence of Evan’s new treatment, and an abstract of the article can be read here: A quick shout of thanks to Evan’s Granddad,, for finding this and bringing it to our attention.


Amp & Volt
 So with that is the synopsis of the last seven weeks, you might imagine that Evan’s mindset has been pushed off kilter, and you would be right. For that matter, our entire household has been turned on its head and in an effort to balance the outside chaos we have increased the internal turmoil by adding more pets. Because nothing says, “I’m looking on the bright side of life” like Dwarf Hamsters and a Dutch Shepherd.

Evan has a difficult time with his appetite and has been slowly losing weight over the past 6 months, however in the past eight weeks his weight has dropped 15 pounds. He is in a battle of demonstrating his teenage mindset of controlling the one thing in his grasp (what he eats) against the information that he must eat a certain number of calories as part of his treatment against a constant feeling of bloating against stomach pain that is related to stress against medicines that both slow up his gut and those that speed it up.

Emotionally, Evan began talking to Justin Yopp, PhD. at UNC over 6 months ago. They have developed a really good rapport so that Evan has an outlet beyond the four walls of home and with someone he can trust. The positive changes have been welcome especially over the past 7 weeks, and we will continue weekly visits for the foreseeable future.

Mentally we are all exhausted. 5 years ago it was written that this would be a marathon and not a sprint; and as we pass the 20th mile the going is slow, difficult and frankly painful. None of us has ever had to work as hard as we are right now and we would be lying to say that we do not suffer from poor eating and sleeping habits and being generally over-extended; but who else can do what we need to do as a family, as patient, as care givers?

Evan does not want to hear of new ‘miracle’ treatments, he has life experience that tells him there are no silver bullets nor is there an easy way out; only hard work and perseverance can see a person through. For anyone to face this situation with the dignity, intelligence and aplomb would be remarkable; for that person to be 13 and have had to deal with the hard questions and answers of life for 5 years is . . . I cannot find the word. If you think of it, either leave a comment here or friend Evan on Facebook and let him know directly.

Looking forward, Evan will have a number of pieces on exhibit at two local Art Shows, the first at Hope CafĂ© in Garner opens on May 7; and the second is through the ‘I CANcer’ teen support group through the UNC Cancer Center that opens in Carrboro, NC on June 6.

As tempting as it might be to resign, curl up in a ball in the corner and cry ourselves to sleep; we have not done that. Each day we commit ourselves to taking one step at a time, sometimes one hour at a time to moving forward; but we have neglected some of the rudimentary aspects of life such as taking care of the house or planting an odd flower or bush to bring a sense of living home. It just seems just a little bit too fluffy if you get our meaning; and so in the vein of an American Folk Tale, our home has become a little like Rip Van Winkle – Time has gone by, but the house remains in the past. And then last week a friend, upon the conclusion of a phone call of support, offered up the line we have heard so often over the last 5 years, “Let us know if there is anything we can do.” And from that statement has sprung an idea for a summer project where people can get involved, stuck in and have a concrete contribution to Evan’s situation.

Let the need be framed; Yardwork and landscaping, driveway extension, house painting, build a shed, and retire the ~$18,000 in outstanding medical debt that has accrued over the last year and a half (We pay $350/month already and have retired some $6,000 in co-pays and co-insurance. NB. Insurance has paid the bulk of >$500,000 in fees for hospitals, providers, scans and medicine)

The idea: Miracle2012: A multi-pronged, get involved and help summer program for Evan that culminates on the weekend of the opening ceremonies of the London Olympics – July 27, 2012.

The plan: a summer of yard work and house work building the shed designed by Evan; an online auction of items gathered from Evan’s community of supporters; and culminating with a Show and a Party.

The Requests;

The request to our friend, “Would you be willing to set up the logistics for the house?” – YES

The request to friend #2, “Would you be willing to headline/assemble a fundraising music show?” – YES

To you, “Are you willing and able to lend a hand? Hammer a nail? Plant a tree? Do you have something that might be auctioned off to help raise funds for these projects? Do you have an appetite to eat a little BBQ? Or want to hear some good local music?”

Items for consideration: Top level Signed Soccer Jerseys that could be framed (MLS, Premier Lge, etc.); baked goods from around the world that might be vacuumed sealed and shipped; Original Art; Any other contribution you believe would help.

For all those wonderful people who have lifted Evan in prayer, please do not stop. For all the amazing people who have offered to do anything, here is something.

There is no report on who has visited this blog so we would ask you to take the next step and send us an email to put yourself on the line to help out. Please send your information to