E - Nevus Notes

Confirmation - Frustration

2011-06-04T21:37:00.000-07:00

For the longest time the writing for this blog has been driven by circumstance; and for an equally long time there has been a truism – No News is Good News. But sometimes, the news we have, the information we intend to share is so gut wrenching, so utterly sickening that we feel that we have been kicked in the gut so hard as to drain the color from our faces and leave us gasping for air. We are unable to immediately share. Such is the case in this instance.

We have a holistic approach to Evan and his condition in that we can take into account his entire history, balance this with the picture of his mental and spiritual health; and from this perspective we hold fast to a faith and hope that he has/is/will continue to battle off the challenges inside his body and live a full life. But we have skipped ahead too far and too fast, let’s just slow down and start back in February of this year.

At that time, the chemotherapy regimen seemed a little lax with hit-n-miss dates, no real pressure to be on a regular schedule, staff taking chemo directions as suggestion vs. law, everything was swimmingly normal. After two previous scans showing remarkable reductions in tumor size; frankly there was more concern on our part that Evan had missed a couple of growth spurts and was dealing with some annoying side effects (The concern over side effects is directly proportional to the likelihood of imminent demise).

In comparison to constant nausea, loss of hair and lowered immune system the issues were minor; however, when they are the only indicator that you are ill and you’re having difficulty sleeping such side effects loom much larger.

We wanted a break from these annoyances, previous scans looked good, perhaps the nodules had become a more chronic situation, needing to be knocked down a peg, and then keeping them in check. So we asked about the possibility of a treatment break, the oncologist reluctantly agreed but only if Evan had a new set of scans and that after a 90 day break there would be a post break set of scans to gage what had happened.

This pre-chemo-break set of scans revealed that the nodules had not really changed since the previous set of scans. The oncologist took this to mean that the chemotherapy had run its course and that UNC was out of treatment options. The next step would be to wait and see and then make a determination for a course of action after 90 days, but that we should start the process of getting more fully connected with another treatment center, specifically NIH due to their familiarity with Evan and the underlying rarity of his disease process.

During the first part of this treatment break, and in a totally unrelated and red herring aside, Evan took an academic standardized test to see if his dad was a suitable teacher for continued home-schooling. Frankly given the amount of time that dad spent on his own schoolwork, some people may have been concerned that Evan could even spell his name correctly after a year of questionable education.

60 days later the results were in. And dad can continue being the teacher as Evan scored in the 97^th percentile for his grade; mom & dad are greatly relieved as this represents the one of two growing parts of their retirement plan (the other being Evan’s sister, Morgan).

In early April, the on again / off again / on again science conference on pigmented lesions in Germany confirmed that dad was asked to attend and to share an update on Evan, if possible in the form of a case report. Starting and ending the first weekend in May, the trip was a crazy travel affair, from last minute changes to the requested paper, a 24 hr notice for the need of a poster presentation, missed flights, lost luggage, too much German beer; all done within 96 hours.

The paper was well received and there was encouragement to submit it to peer-reviewed journals. But more importantly was information presented by other researchers on genetic pathways, triggers and chromosomal analysis related to malignant disease. One piece of information stood out in a discussion: Other patients with nevi related flank nodules have been seen elsewhere in the world, and bad outcomes had been seen where these flank nodules had been attempted to be removed. There is no data on this subset of cases yet. (and the numbers are increasingly baffling – giant nevi occur 1:500,000, but a giant nevi may be caused by any of 14 different genetic anomalies, and the trigger for these anomalies might occur at several places on the embryonic development timeline in >20 possible environmental-to-genetic links) And yet as rare as we have felt Evan to be, even possibly unique, a doctor had seen not just one patient like Evan, but several. He is not alone, (never has been, never will be) but it is strangely comforting to know that there are others struggling with the same issues.

When dad returned home, it was time to schedule the post-treatment follow-up scan - which happened 8 days ago. We did not expect miracles. In the past 3 months, Evan has grown almost 2 inches taller and gained over 5 pounds. We have witnessed over his life, that as he grew bigger – so did the nodules. So when this past Tuesday, the oncologist called to tell us that the nodules were bigger, we were not surprised, when she mentioned that they had doubled in size we did not panic; but when she asked adamantly to speak to us without Evan present we knew there was a problem.

It is time for a brief digression. Two years ago Evan began the process of confirmation in our church; a guided introspective journey of education, belief and convictions. The confirmation process will culminate today, Pentecost Sunday, with Evan’s public confirmation of his faith. Such events and cultural practices go back millennia and are considered to be the spiritual demarcation where a person moves from childhood to adulthood. We are reasonably confident that Evan has already crossed this bridge with everything he has been through, but ritual is ritual.

We hope you can grasp that the weight of the weekend (a weight we left for another to carry) was multiplied when we added a secret meeting with his oncologist on top of the confirmation dinner, prayer-pal revealing, confirmation service, and his confirmation open-house. The insanity of the situation is that balance in our lives is directly related to the amount of other things filling our time; in such a manner we are able to balance the temptation of allowing our thoughts to delve into introspective self-pity. We also handled the pre- and post-surgical care of a top level international soccer player on this weekend just for good measure.

Going into the meeting with the oncologist we developed an idea of what we were likely to hear: the tumors are bigger, out of treatment options, does NIH have any options. We were not prepared to grasp/hear: 8 times larger than February, this will cause his death, “No, Can’t, Won’t”. It was not until we actually heard the desperation, frustration, fear and lost hope in the voice of your son’s archetypal cancer fighter; that the jack boot hits our gut and tried to suck the very life giving air from our lungs.

So what do you do after hearing those sort of things; here’s an idea, Johnny Carino’s for a light Italian lunch followed by conversation and calls to ensure that your son is ready for his piano lesson in the afternoon. We have heard doom before, we have seen people lose hope for Evan and for others; but we chose to stay calm in the moment, applying all we know and have learned to guide our little boat through the shoals of naysayers and doom mongers. If we lose our focus now, if we drop our gaze from the target, if we panic; then we do no one, especially Evan any good. In fact we will likely do him harm.

For those of you who cry for Evan, and for us; thank you. If you have read this blog in the past you know that it has been a source of raw emotion at times, a place to vent angst and spew frustration. Today we must set aside that luxury in favor of a measured evaluation of the situation to make the best decisions for Evan’s health and quality of life; a long life.

In contrast to the depths of despair that Evan’s worldy physician shared, we would like to close this post by sharing the letter we wrote to Evan for his Confirmation Sunday:

Evan;

For several years we have written about you.

We have written about your battles.

We have written about your travels,

and some parts of you that have travelled further.

We have written about your Faith.

We have written about your Love.

We have written about your Legos.

And we have written about your status in our life as our hero.

But what is a hero?

Does a hero wear a long cape?

Or perhaps a mask over their eyes?

Maybe they can be invisible,

cloaked from the ‘bad guys’.

Or maybe they wear a jester’s hat

and have a shiny mirrored disco ball spray out light rays that shatter maelstrom warriors into little, tiny bricks.

That all sounds heroic,

but it just doesn’t feel right for you

or the world.

Which brings up another question,

what exactly do hero’s do?

Do they attempt to eliminate all the evil in the world?

Or is it something more subtle,

perhaps simply providing comfort

or friendship to a suffering soul?

Perhaps shielding the innocent from the ravages

that the storms of life seem to rain down

from time to time?

And where does a hero get their strength from?

Do you eat your Wheaties?

Or maybe you are infused with power

from a sun soaked nano-suit of reactive armor?

Or do you draw upon a power from within,

from a power cell that was planted in you

with the simple pouring of water on your forehead as an infant?

And what is your real enemy?

Is it feeling weak

after holding that disco ball above your head?

Or do you feel worn down by the constant pressure

of battling invisible foes?

When you shield others do you feel chipped and broken

and not quite whole?

Or is it the tired feeling

of trying to hide from a relentless foe

that never gives up?

Or is it perhaps,

a sense of faith slipping from your grasp,

like feeling the edge of a cliff under your heals?

That just one more second of your burden,

will end in shattered shards of glass.

That the glass that shatters

might be your fragile heart.

As you choose to profess and confirm

your faith and belief in Jesus;

it should come as no surprise

that a hero cannot do

what they do,

when they do it,

or how they do it;

without having a hero themselves.

And it is this hero of yours,

Jesus Christ,

who you try to model

before those you meet every day.

With Jesus as your hero,

you do not have to be perfect,

because He is.

You do not have to be sinless,

because He is.

And when you get tired,

you know that He is tireless.

And when your heart feels empty,

you know that His is always full.

So as the journey of your life moves through this station;

we give you two blessings:

1. Preach the Good News of your Hero to all you meet in your journey;

do it with love,

compassion

and strength

words only if necessary.

2. You are our hero

as you battle against unseen enemies;

but we know that it is your Hero

that gives you

passion,

peace,

wisdom

and joy;

So remember:

Dead heroes save no lives.

And keep on living,

for today is the first day in the rest of your life

All our Love

Mom & Dad

Give Thanks & Thank you!

2010-11-25T08:23:00.000-08:00

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

We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor prompted by love; and your endurance inspired by hope in our Lord Jesus Christ.

And as you go forth from this day, know in your heart that we do not toil alone in our journey; and no matter the size, weight or other dimension of your burdens you too will find support, love and encouragement from your Father – even when it sometimes comes from and through your fellow travelers.
In closing, as we enter the commercial fray of this holiday season; We thank you for your continued support as our battles continue; And we offer prayers of hope, peace, joy and love to each of you - in, by and through the power of the spirit of the season, The Holy Spirit. Many continued blessings to you all.

The Mice of NIH

2010-08-07T06:20:00.000-07:00

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

A Battle Won

2010-07-31T05:34:00.000-07:00

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

Fish or Cut Bait

2010-07-18T20:03:00.000-07:00

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

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

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

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

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

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

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

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

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

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

What we know:

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

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

Chemotherapy

Taxol/Carbo FAIL – inefficacy
Temsirolimus/Depakote FAIL – toxicity
IL2 (Interleukin II/Interferon) ??? – ICU necessary due to high dose reactivity (14 doses, spaced 6-8 hours apart, 7 day rest period, and repeat for total of 28 doses over ~12 days)
Vaccine Trial

Dependent of prior failure of other agent
Late stage
Clearance/waiver/acceptance

Other Options presented via National Institutes of Health (NIH)

Surgical Intervention

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

Motivations, Fears and Basis

Inaction may lead to metastasis and early death.

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

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

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

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

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

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

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

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

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

Pay It Forward

2010-06-15T11:59:00.001-07:00

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

The Welcome Banner
Evan's Table

Tyler stops by

LEGO city

Evan builds for LEGO

Evan builds more 4 LEGO

Joe Meno admiring fellow adult fans of LEGO

Evan answers questions

Nathan Sawaya - LEGO Artsist

Revel, Rebel or Recur?

2010-04-20T20:05:00.000-07:00

Dateline: Raleigh

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

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

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

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

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

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

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

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

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

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

Spell Future - N O W

2010-01-04T13:44:00.000-08:00

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

And the Other Shoe Drops!

2009-10-20T14:04:00.000-07:00

Each time my fingers hit the keys to put together a post it seems tougher and tougher to find the words. Clearly words and I are not strangers; but capturing the moment, establishing the essence is often difficult if not impossible. Such is the reality of this post. Evan has had cancer, Evan has cancer, and Evan will have cancer in the future.
In this latest battle, surgery cleared margins all around the masses, but the infilitrating tendrils reached through the muscle, beyond the fascia and wrapped themselves in the fat around the 11th rib. This is beyond the edge of the surgeon’s reach, it is into very dangerous areas. The war is reaching a crescendo. Even though we found these new masses quickly, it clearly was not quickly enough.
What does this mean? It means that bad cells were left in a place where they are not likely to receive the nutrients necessary to grow and as a result will likely die in place. Because of the placement of the cells and the lack of access to nutrients, it is also a bad location for chemotherapy. If it does grow again from these cells, it will be concealed beneath the layers of skin, muscle and connective tissue between the rib and the skin. If it does grow again, it will be closer to Evan’s solid organs than it has ever been. If it grows again, there is no lymph defense system between it and his central blood circulation. Left some behind, likely, likely, if, if, if. Not particularly encouraging words, not the words you want to hear
Where do we go from here? Wait and watch! Be vigilant and be prepared. Scan in 6 months.
What have we gained? Time. Time to love. Time to learn. Time to allow immunity to gain a foothold. Time for prayer, and time for peace. Time to reinforce hope. Time to encourage others. Time to plan for our futures. Time to quantify the love in a hug.
We will always have time for peace, that internal place of sanctity granted by the very presence of our creator. For if we do not create and take the time for it now, we will have an eternity to wonder why we didn’t.
And how does a person quantify the love in a hug? We’re not quite sure, but we know that Evan gives the best. And until you can quantify the love in a hug, and show us someone with more than Evan’s, we defy you to find better.
What next? Well for Evan it is back to school today, no time like the present. So with his 6 inch drain line out on Monday, a 10” incision from his spine to his side, and a slightly twisted gait from the tight left sided muscles, Evan will be walking down the halls of school today. We asked for ‘body guards’ and have ordered a sweat wicking armored (a flak jacket assembly, looks like the Master Chief from HALO) t-shirt we will get him back to ‘normal’ 10 year old activities as soon as possible. But surely we tell you that courage has a new name today, and with a resilience and strength of Kevlar reinforced carbon composite plating, it must be known as Evan.

The Good, the Bad and the Ugly!

2009-10-13T19:12:00.000-07:00

Summation:
Up at 4:30 a.m.; out the door by 5:00; Arrive at hospital registration at 6:00. Waking up with smiles and daddy clowning. Pre-Op, Drs. and Nurses – Oh my! Good bye hugs and tears for fears. Into the OR for 7:30, and begin surgery by 8:00. 8:30 lead surgeon talks with parents and shares positive details and discharge instructions. 9:00 am out of OR. 10:00 waking up for 2nd time, discharge requirements and medications. 11:00 am back in the car and home by noon. And since then; sleep, smiles, nap, medications, TV, nap, medications, food, moving around, computer, medications and sleep.

Abstract:
General: God is good all the time, all the time God is good! Prayer warriors are indispensible. Evan is the definition of courage. Grace should never be taken forgranted.
Good: Attending surgeon, The Wray family, Tim Goodale and Granddad
Bad: Anesthetist, CRNA and Pre-Op nurse, Lymphedema
Ugly: Post-Op nurse, Adult rules for pediatric patients

The Journal:
It has not passed my attention that this blog has at times been more than a little esoteric. It has been an outlet for a deeply troubled father and a tool for sharing some of the more difficult realities of travelling a life journey with a child who is facing the battle of their life: literally. In no way has the trip been easy, and while we would never wish this reality upon anyone else, we have come to grasp that how we traverse these obstacles has presented some of the readers with concepts of hope, joy and peace in a way that they may have never thought possible. Perhaps it is you who we have been able to shed a little light upon your path.
The post immediately before this one is a brief look at an instant. A ‘moment’; a single point; a point of ‘pain’ on a sphere of possible pain, some points seemingly more painful than others.
ESOTERIC SIDEBAR: Evan’s sister Morgan is taking Geometry this year and all analogies seem to take on mathematical contexts. In this instance, we look at a sphere. A circle is said to inscribe a single plane in an infinite series of points connected in an continuous arc equidistant from a central point. A sphere is a series of points that number as a product of an infinite number of points of one circle of one plane multiplied by an infinite number of planes describing an infinite number of identical circles. And so it is that the number of possible ways a person might feel pain is infinity x infinity x infinity.
EXOTERIC APPLICATION: Friday night Evan was the guest of Eric Staal and the Carolina Hurricanes at an NHL game promoting Hockey Fights Cancer. In our suite was a young girl Evan’s age who we met when we first started at UNC. Her fight is not going nearly as well; she has lost her hair, her left arm, and yesterday had surgery to remove tumors from her lungs. Monday I met briefly with Evan’s school’s administrator who lost a dear sister in law and mother to a post operative complication 3 days after a ‘minor’ procedure. Any pain we might feel is but a single point on a sphere of infinite points that one person’s pain cannot be compared to another’s but rather the one in pain needs prayer, love and encouragement based in reality.
THE GOOD: Dr. David Olilla is a cancer surgeon who specializes in adult melanoma resection. It in his hands that we have placed Evan’s outcome, it was his hand that held each of the doors open on the way into the operating room as he walked beside Evan, and it is his hand that he extended to hold and comfort Evan before anesthesia took him beyond the conscious world. The work is aggressive for an aggressive disease. The tumor found just 3 weeks ago had quadrupled in size and had developed a nearby sister. The operation took both masses, and surrounding layers of muscle and fascia. The closure involved bringing skin from below up to the incision line and placing a drain to reduce swelling.
To all who have offered prayer and continue to keep us in their thoughts and prayers; please find our appreciation and gratitude for all you do in these following paragraphs.
Heather and David Wray, and there three amazing children, Ethan, Claire and Mary have been a tower of strength in prayer and purposeful support. I could write pages and pages about their strength and friendship; or their point of pain as they prepare to fight against neurofibromatosis; but today let me just say thank you for a timely wonderful meal. Tonight Heather whipped up Chicken Tetrazzini and Claire threw together some tasty muffins. Mmm mmm Good!
Tim Goodale is a Special Forces medic serving in Afghanistan. Over 10,000 miles away, 9 time zones apart, and he used his precious phone time to call and check on Evan. He has been there 4 months, has 3 more to go, misses home and his fiancé Katrina more than words can say; and out of the blue a voice ethereal from the middle of Asia brings a measure of love and humility that reminds us how important relationships near and far are to our health and perspective.
And then there is the love of family. How do you say thank you to a father and Granddad? Today it was taking Morgan to and from school. Other days its picking up a grocery or two; and then there is the spaghetti dinners each week. And you would be hard pressed to find a more dedicated and committed prayer warrior.
THE BAD: In March as part of the surgery Evan had left axillary lymph node dissection (removal of the lymph system from his left arm pit) as a result he should never have an IV in his left arm or his blood pressure measured on his left arm. At some point this morning we slipped from patient advocate into full parent mode; we had shared with the pre care nurse the ‘no left arm’ procedures; the Anesthetist said she was familiar with his history; Evan had a prepped port-a-cath, and yet in post op we were horrified to see a swollen left arm and an IV start in his left hand. No harm, no foul, but a bitter reality that you can never let your guard down. Too many assumptions, too many things that might go wrong.
THE UGLY: Caregivers and rules not geared toward family and patient support of children as patients. “If you don’t pee in the next 30 minutes I’m going to have to catheterize you.”, “Only one visitor can be with the patient in recovery, it doesn’t matter their age, other patients might see you receiving favoritism.”
OVERALL: We will eagerly await pathology of the masses, we will maintain a highly vigilant attitude and revise our tracking process, we will hug a little tighter and love a little deeper. We will heal and we will take physical therapy. We will give glory too God for this day, for this moment, and we will seize the day and live for this instant. We will pray for friends, family, acquaintances and strangers who maybe experiencing their point of pain on the cancer sphere, and we will thank you for your patience, love and the peace you bring to us through your thoughts and prayers.

Waiting on the moment . . .

2009-10-13T05:25:00.000-07:00

Having delivered Evan to the hospital for a 6:00 am start to today’s adventure in medicine, and now while waiting for the page to return to post operative recovery; I am contemplating the ‘moment’ The ‘moment’ is a multifaceted mile post on our journeys through life. This morning it was that instant where Evan was separated from us heading back to the operating room.
Up to that instant the entire process had been part of an academic medical exercise; after this instant is the reality of surgery, pre-operative anxiety and post-operative anesthesia induced fog and pain. The instant is marked by deep longing hugs where hearts meld together as one and a steady drip of tears marking the hidden and unspoken fears.
And so we wait.

The Silver Lining. . . Surgery in Six days

2009-10-08T18:16:00.000-07:00

MEDICAL: Diagnosis: Recurrent Malignant Melanoma without metastasis. The CT scan revealed a primary mass and an adjacent mass within the confines of the original wide margin border. These two growths sit on top of the left side 11th rib. They do not involve the surrounding fascia on the scan and the scan revealed no distant metastasis within the body but especially to no organs.
Treatment: Local wide margin excision of the masses including overlying skin, involved fascia, muscle and potential the periosteum (bone covering) of the underlying rib.
INSIGHT: When battling cancer there are fewer more clear paradoxes than potential surgery. The silver lining to this battle in this war is that the proposed surgery is the most appropriate course of action at this juncture. The looming cloud prior to scan results is multiple distant metastases with a lousy prognosis. The tension prior to hearing the results was palpable. The relief was equally real, and there was a collective sigh on the part of us; the parents.
The primary good news this time around has been the rapid identification of the recurrence. In the past 10 days, the second mass had become visible; and this recurrence seems directly related to an overall growth spurt. Because it has been caught early, the underlying rib will remain, and there is no need for a skin graft. It will also mean outpatient surgery; waking up and going to bed in his own bed – priceless.
SPIRITUAL: Unsure as to the parts, roles and lines in the plan of the great play, trusting the director and appreciating a prayerfully and thoughtful audience participation.
EDUCATIONAL: Teachers and Administrators: informed, involved and supportive.

Here we go again!

2009-10-04T09:28:00.000-07:00

Three weeks ago I gave Evan a hug good night. His mom, Lizy was in Seattle with her job. In an instant it felt like the wheels on the bus came off at high speed while traversing an icy mountain pass. There it was. A lump where there shouldn’t be one. For those who are on Lizy’s rapid response prayer chain you have known about the discovery but perhaps not some of the details.
With Evan’s help I was able to change the status on my Facebook page to, “Reeling in the reality of a recurrence, Praising God for an amazing summer without worry!”
The 5 days before Mom got home were some of the most difficult times we have faced as a family through this journey. Our strength has been the ability to fill our roles within the close confines of a home filled with hope, encouragement and prayer.
While it was just a lump, and while I am not a doctor, I have been through this scenario with Evan too many times in the past 2 years. Its size, location, how it felt both to me and to Evan told me all I needed to know. What was missing was official confirmation, determination of extent and a plan of action.
I can go no further without answering the question, “How did you deal with this? How did you get through this?” I didn’t. Evan did. His tone and reaction, curiosity and understanding are remarkable.
“What is it Dad?”
“It’s a lump”
“What is it?”
“I don’t know, but I want your Doctor to take a look at it”
“What do you think it is?
“I think it’s something that’s not supposed to be there, it feels similar to before, but it’s in a slightly different location and only a Dr can tell us. I’ll move up our appointment so we can see the Dr. sooner.”
“Okay, can I sleep in Mommy’s turn tonight.” (Mommy’s turn is where Lizy sleeps, inside communication for can I cuddle with you and fall asleep in your arms Dad.)
Then we prayed asking for healing and understanding and safe travels for Mom.
Lizy got home on Saturday morning, her job with the Railhawks keeps us all busy and the Dr’s appointments had been set up for Monday afternoon. Monday arrived both too slowly and too quickly. If you have not followed Evan over time what I am about to share will seem surreal. Who am I kidding, I’ve never seen anything like it before. My son, Evan, all of 10 years old, is having a fully fledged discussion on treatment options for a recurrent melanoma complete with details such as metastatic pathways, hormonal impact upon his current growth spurt and nutritional recruitment by cancer cells.
PLAIN SPEAK: The melanoma has recurred in an area immediately adjacent to a surgical site over and involved in the fascia of his left side floating ribs. Primary treatment would be surgical excision with wide margins if CT scan does not indicate distant metastasis. This would occur sooner rather than later. This new growth appears to have origins in surgery of 2/2007 and is related to a current growth spurt (Evan has grown ~8% in weight in the past 60 days, and the mass has appeared in that time frame. It is a known fact that nevus tissue grows in proportion to general body growth.)
Evan is fully involved in 6th grade and thoroughly enjoying moving from class to class; although the 40# of books to be brought home each night can be a little burdensome (pun fully intended) Music is still a vital part of his life and he just received a new piece for piano, as soon as he gets it down I’ll post a video. If you would like to check out more pictures of Evan, please consider becoming Lizy’s friend on Facebook.
Thank you for your continued thoughts and prayers. This is a long journey, and while we have enjoyed a brief respite, as we travel onward we both desire and appreciate your support.

UPDATE . . .UPDATE. . . UPDATE. . .

2009-06-04T19:14:00.000-07:00

While we do not believe in ‘Fair’ as in, “She got to do it, and I can’t; that’s not fair!” It only seems fitting that young master Evan gets to enjoy a sunny day or two at this point in his life and his perseverance through the tough part of his life journey that he is emerging from. It also only seems ‘fair’ to keep all the faithful people; who have followed, thought about and prayed for Evan, up to date on how he is doing.
Evan is doing very well. While there are monthly trips to the Pediatric Oncology Clinic at UNC Chapel Hill; these are to maintain the health and viability of his surgically implanted port. These port flushes must be conducted once a month until the port is surgically removed. It has been decided that the port shall remain in place until we get through a sufficient number of follow up scans as to confirm what we are seeing – the cancer is gone, and isn’t coming back.
The scans will be MRI’s every 90 days for the next 2 years or so coupled with accompanying alternating visits to his Pediatric Oncologist, and the Oncosurgeon. The only other long term physical impact will be the ongoing cleanliness and infection avoidance rituals affecting his left arm (Washing hands, scrubbing nails, no gardening without gloves and long sleeves, etc.)
On Evan’s scholastic front, he completed 5th grade and is now considered a rising 6th grade middle school student. He won his section of the Science Fair, and the blue ribbon hangs proudly from one arm of the stand. The same day he presented his project, the Melanoma Giant Nevus foundation threw a benefit concert on Evan's behalf. Heather Wray did an amazing job, and the talented musicians were spectacular. The blue ribbon would have been anti-climactic if a friend from church hadn’t started shipping parts to Evan and asking him to build a computer for him.
It seems that the order or importance and priority of topics for this post are in reverse order – if you were Evan. This is stated because the last couple of tidbits for this post would undoubtedly been the first and possibly only information shared if Evan were the author. That would be because Evan’s mind revolves around two concepts, computing and LEGO. And the first item of importance in Evan’s world would have been the opening of a LEGO store right here in Raleigh. At the beginning of this year, there were only 11 LEGO stores in the USA, so this is a big deal.
Evan had been granted the wish of his life n January, a trip to LEGOLAND in California, by the wonderful people at Kid’s Wish Network. When I (Dad) heard about the new LEGO store opening in Raleigh, I called KWN and asked if we could talk to LEGO or if they would prefer to make contact. They (Vanessa) graciously told me that they would be happy to contact LEGO and see if their #1 fan in NC might ‘help’ with the Grand Opening.
At least a month went by and then a phone call came out of the blue – the LEGO Master Model Builder was going to be in town for the Grand Opening and would like to meet Evan. The rest is history. Evan met Dan Steinenger, the only LEGO Master Model Builder in the USA at the end of day 2 of a 3 day Mega-Build event for the Grand Opening. Dan was in town to oversee the building of an 8 ft tall Yoda from Star Wars, Evan wanted to meet the man he hopes to replace when he enters the workforce. We’re not sure how long Dan had intended to spend with Evan, but he asked Evan if he had any questions; Evan pulled out the list of previously dictated questions, and all of a sudden there was a meeting of the minds. Not just Evan to Dan, but Evan to Bob (The manager of the Potomac Mills store in VA) and Evan to Joe (The Editor of Brick Journal, the LEGO aficionados monthly fix of all things Brick) A brief meeting lead to a leisurely 2 hour dinner which lead to the male bravado of social events (Anything you can do, I can do better!) and Evan threw down the gauntlet, breeching all known LEGO etiquette, he challenged Dan to a LEGO building race.
And so the next day at 3:00 pm, the race was on

By the time the afternoon was over, Evan was completing Yoda, Morgan had won a major LEGO set, Mommy was frantically looking for a 2 x 6 Yoda green brick, and Daddy had redesigned the base unit of Yoda assembly to account for a brick shortage; and most importantly for the next installment, Evan has been invited to attend the Brickworld convention in Chicago as the guest of Joe Meno, the Owner/Editor of Brick Journal.

No Words

2009-04-17T05:39:00.001-07:00

No words will ever capture the depths of despair that a person can sink to when they hear that their child has cancer. Similarly, there is no greater joy than hearing “Your child is cured” after an illness, whether an earache or chicken pox. But there is a time spent in purgatory for those who have undergone treatment for cancer and are given a ‘clean bill of health’. There is no way to guarantee that every last cell has been killed or removed and so for the next 5 years there will be regular scans to establish a baseline and seek to determine and changes by comparing one scan to another.
Evan is recovering well from his surgeries. He is returning to school, participating in the Science Fair and learning that the PT after his mom’s name is not for Phyiscal Therapist, but rather Pain & Torture or perhaps Physical Terrorist. The latter is a result of the work being done to regain full use of his left shoulder that was held immobile for a couple of weeks after the removal of the lymph node network in his left arm pit (21 nodes removed, 2 with metastases at level 1, no metastases to level 2 or 3).
The mass was removed with negative margins (no tumor present at the border of the piece that was removed) leaving a defect (medical term for crater) that is ~3-4” in diameter and ~1” deep. The defect was covered with a skin graft from his left thigh. Both the donor site, and the excision site are healing well.
Thank you for your prayers, support, meals and other ways you have reached out to help us through this part of this journey. It is in God’s hand now (That’s what a doctor might say), we believe it has always been in His hands. Now we just have to deal with the realities of bill for surgery and hospital stay. As we contemplate how that will come to pass, please enjoy some pictures of Evan post surgery.

We're Home

2009-03-17T18:41:00.000-07:00

We arrived home today about 5:00pm. We had a pain pill about 30 mins before we left and he slept most of the way home, which was good because the getting in and out of the car was tough! Thanks to having a wheel chair delivered to our house yesterday, we were able to lift him in the wheelchair up the front steps, as he hasn’t started walking yet. It’s still pretty painful to put weight on the left leg where the donor site for the skin graft was taken.

He is glad to be home, albeit a hospital bed in the dining room. But his buddy Snoopy (our dog) was sure glad to see him and hasn’t left his side since we got homeJ

We don’t have any pathology reports back yet. We are scheduled for a return visit Monday to UNC to see the onco-surgeon and next Thursday the plastic surgeon who will do a dressing change.

God’s grace is sufficient…and we really appreciate all the cards, calls, visits, gifts and foodJ Nana, Granddad and Morgan have done a good job holding down the fort while we were away.

Evan’s baby cousin, Joshua, also underwent surgery today back home in Michigan which was successful, so we have lots to be thankful for todayJ

Love and many thanks,
Paul, Lizy, Morgan and Evan <><

All in good time

2009-03-15T14:16:00.001-07:00

The day after surgery and just hours before their 1-0 victory over the New England Revolution, 12 of Evan's friends from the Carolina Railhawks stoppped by to wish him a speedy recovery (Pictured on the left Nate Norman, Brad Rusin, Caleb Patterson, Jack Stewart, and Paul Ritchie; on the right John Gilkerson, Brian Plotkin, Josh Gardner, Eric Reed, Steven Curfman, and Caleb Norkus. Not pictured Mark Schulte)

Time. This will take time. If there is a time for all things then we are now in the time of healing. Concurrently we exist in the time of pain, and time of preparation for discharge; but it is the ever present ticking of the proverbial clock that marks each day. Around us are so many families with so many hurting children from so many causes; and yet there is a quiet solitude that is the background for our current step.

48 hours ago we were tearfully sending Evan back to an operating suite where we didn’t know what was going to happen, just that a surgeon was going to do his best to remove all traces of cancer. All we knew was that Evan was as scared as we have ever seen him, and in recovery he shared that he hadn’t been able to keep himself together when they got him to the operating room. The relief he felt when he could look in our eyes and know that he had survived was a palpable weight lifting off his face, and sleep soon followed.

Actually sleep has been the primary focus of the last 48 hours. There have been the requisite input/output breaks, medications moments and of course Lego construction therapy; but mostly it has been about studying the inside of his eyelids. Narcotics will do this to a person.

Evan controls his own destiny for this next step, to be able to ambulate, to get into and out of bed without excruciating pain, to be able to breathe deeply enough. Pain management is a function of medicine, time and activity. Medication is scheduled against time, activity is measured against time, and time knows no measure but the passing tick tock of a clock.

Peace is that place in your heart where you find tranquility about your purpose and place in any given moment. Having achieved a positive surgical outcome, it would seem likely to be at peace, but the restless soul always seems to seek out the next step rather than to bask in the glory of the grace of this given moment. It is at these times that our friends in ENCVDC share the words of supportive peace, God Loves You And So Do I.

Your thoughts and prayers have given us the presence of peace through these past hours of torment, and they continue to see us through our current challenge and time of healing. So we leave you with this thought GLYASDI(We)

The Closing

2009-03-13T15:38:00.000-07:00

Just had visit from Pediatric Plastic Surgeon. Evan will be out of surgery shortly; this means surgery took less than half proposed time. We were told something we have always known, but love to hear, “Evan is a strong young man.”

We do not know the implications of such a rapid reconstruction and will likely find out in the coming days, but we are hopeful that things just came together in a divine way. We have also been told that Evan is in control of his own destiny for discharge. When the pain is managed and he tires of hospital food, not necessarily in that order, we will be able to go home, possibly as soon as Sunday.

Thanks be to God.

More details to follow.

Halftime score: Evan 2 Melanoma 1

2009-03-13T14:52:00.000-07:00

The mother of the chief author of this blog has requested less medical speak and more plain English. Here goes. Midway through this challenge, the first surgeon, Dr. Olilla, has just spent a few minutes detailing how Evan is doing, what was found, what was done, what is going on now.

In order:

Evan has done well with this first part of the procedure and is tolerating things well.

Multiple lymph nodes in the left armpit were indicative of some tumor metastasis. The extent or current activity will be determined by pathologists.

The primary tumor was excised down to his rib cage taking all the muscles and tissue from the outside to that depth with wide margins in all directions. The entire left arm pit lymph network and lymph nodes was removed, and a drain to prevent lymphedema was placed.

Reconstruction will begin as soon as the plastic surgeon, Dr. Van Allst determines the plan of action upon looking at the defect (great big hole to be filled)

None of this is unexpected, none is easy to hear. Evan is in God’s hands via the hands of surgeons and nurses, and we reside at a place of personal peace not possible without the many prayers being offered on our behalf. As we say, “God is good, all the time; and All the time, God is good!”

More news in a couple of hours.

In this beginning . . .

2009-03-13T13:46:00.000-07:00

There was hug; a deep soulful pull. It was an attempt to meld one body into another, the very essence of fusing heart mind and soul of one person to another. First with his mother who held him tight, and then with his father even tighter, and finally with resignation on his face and a tear in his eye, he sat down in the transport chair and was wheeled back into another operating room. And this is how it happened at 3:15 pm on a damp and dreary afternoon of Friday, the 13th of March, 2009.

In the hollow emptiness of the waiting room, mother and father held each other as the tears flowed. Consolation was impossible, never had they seen their little champion with a heart the size of Montana share as much as a frown let alone a tear before a surgery.

The beauty of an early surgery is the lack of time available for anticipation. In this instance, the length and complexity demanded a later start so that other cases would not be bumped if Evan’s took extra time. The reality is that Evan’s time was bumped to accommodate emergency operations. Asked not to eat since midnight, arriving at 11:45 am, and then having to wait until 2:30 to get ready allows two primary thoughts to spin inside the mind: 1. This will not go well. 2. I am so hungry; I would risk aspiration pneumonia for a burger.

Neither is an option, and the surgical team is the epitome of professionalism and the essence of great bedside manner. We will update more as we get more information and the time to put finger to keyboard.

Metastasis and the Plan

2009-03-07T15:14:00.001-08:00

Metastasis is the word most feared by cancer patients and their loved ones second only to initial diagnosis word ‘cancer’; and the word ‘death’ At Evan’s pre operative appointment this past Thursday we received the copies of the MRI in November and the repeat test in February. In one brief sentence , tucked away, almost as an afterthought were the words, “increased thickening of the lymph node in the left axilla is consistent with metastasis”.

Where do we go from here? How do we deal with this newest development? How long has he got? On top of these questions were the baseline questions for Evan’s upcoming surgery next Friday: How long will the operation take? (We don’t know, excision will take approximately 2 hours, reconstruction – we just don’t know, we don’t know what we’ll be dealing with) How long will he be in the hospital? (We don’t know, depends on his pain management and how he reacts to the operations) How much will this cost? (We don’t know, depends on how long the surgery takes, and how long he is in the hospital, and how good your coverage is, and how much of the deductible remains to be paid)

You might sense a great deal of unease, or a sense of failure to either communicate or of baseline knowledge. I suppose on the part of the medical staff, they have confidence in their skills, but the mysteries of Evan’s body and his disease process are baffling to them. We have a faithful confidence that God will see us through no matter the outcome. But let me be more specific lest you believe that we are blind to the realities of the situation or that we are swimming through this trial with rose colored glasses. Each of us; Evan, Mom, Dad, and Sissy are deeply confident that we are not in control of this situation and that our response to this situation is how we are to demonstrate our faith that God is in control and that His purposes will ultimately be for our good.

Evan remains the strongest of the family and is not idly elevated to the status of hero as he has faced and continues to face the greatest challenge anyone in our immediate family has addressed. He has declared that death is not what frightens him, he knows that he will be in heaven. His fear is of the donor site for any skin graft, the pain of which is akin to being skinned alive. He has shared that his anxieties have lead to daydreaming of dying on the operating table in the middle of the operation. And given the day and date of the surgery, (Friday the 13th), he as made us promise not to handle black cats or walk under ladders, not to say anything about mirrors.

So where exactly does this new revelation leave us? Actually, it doesn’t change anything. We had a plan: chemo – surgery – chemo; and the plan always called for the removal of the lymph node in question. As a friend told us when they heard about the impending surgery, “It’s too bad that the first round of chemo didn’t work.” And while this is true, the plan remains intact; the only thing that has changed is the challenge to our resolution to see it through to the end of Evan’s illness.

With all this shared, and our hero preparing to lay himself on the altar of modern medicine and under the surgical knife, we would like to leave you with a reference that has taken on new meaning for all of us: Genesis 22:3-13.

God’s many richest blessings to all who have read this entry and this blog from beginning to now. Till we report after surgery, shalom, peace y vaya con dios.

Dates, Anticipation and Anxiety

2009-02-28T04:19:00.000-08:00

Through the many months that this blog has covered, it has aimed at capturing not only the events surrounding Evan’s battle with cancer, but also to allow a small window into the emotional and spiritual aspects of a family living with a child battling this terrible disease. There are gaps in this narrative as we have struggled with the implications of certain specific situations and words could not be found to best express anything, let alone the details of the challenge at hand.

Such a gap began again a little over a month ago when Evan concluded his 3rd round of chemotherapy. We shall attempt to fill in that gap.

For seven months from December ’07 to June ’08, we were blind to our son’s condition. As is often preached in business seminars around the world, “You don’t know what you don’t know.” And we didn’t know, and we were to a certain extent blind but searching. It was a stumbling process of snippets of information that were cobbled together using resources to interpret resources and seeking a medical school knowledge without the benefit of having attended medical school.

In July ’08 we faced the decision of committing to life threatening/life altering surgery or committing ourselves to an exhaustive search for answers to questions no parent should ever have to face: What is this tumor? How much time do we have to find out before we potentially risk the life of our child? Will this kill him?

It turns out that an exhaustive search is a limited process when you are dealing with a subject that no one has ever studied, probably because no one ever conceived that Evan’s situation would ever arise. So as we concluded our search a scant 4 months after it began, we determined that there were no other options than to ‘kill’ the tumor before it had any additional chances to develop immediate killer instincts toward our son.

At UNC we were shown the roadmap: Chemo – Surgery – Chemo. It all sounds simple enough in theory, then the rubber meets the road. Chemo is the process of poisoning the body in the hope that the cancer will die before the patient. Patients who ask to keep their last empty bag of chemo drugs for posterity are denied on the basis that poisons of this strength cannot be allowed in the public realm for fear of killing innocent bystanders. The surgical option was held in reserve.

Chemotherapies are target driven and fit into very specific anti-cancer properties of equally specific cancers, knowing that no one knew what Evan’s cancer is, it was unlikely that chemotherapy would work, but in an effort to avoid the next step, it was worth a try.

Evan’s chemotherapy cocktail showed some surprising early promise as the mass changed in shapes and consistency in a short time window, but the MRI just 2 weeks ago showed that the mass had not substantially changed. This was not terrible news; terrible news would have been that the chemotherapy had actually stimulated invasive growth and that things would have been considerably graver.

So when the MRI results came back there was both relief and a distinctly nervous anticipation. 2-3 weeks doesn’t seem like such a long time, until you think that it could be over 1,800,000 seconds. And in each second lies all the thoughts of fear and despair. There is an old Chinese saying, “Anticipation of death is worse than death itself”, but it is not death that is at the core of our thoughts during this time, it is the foreknowledge of pain. Pain not imagined without a point of reference. Evan has been here before; the only difference in this surgery will be the extent and depth of excision. This will necessitate considerably more extensive reconstruction and the overwhelming fear is over any skin graft donor site.

Skin grafting is akin to the modern day equivalent of being skinned alive. The description by plastic surgeons is that it is like a strawberry on a leg or a skinned knee. This does a grave injustice to the true sense of pain that this technique visits on the patient.

With no news from the hospital at 2 weeks from the announced 2-3 weeks to be scheduled, the degree of anxiety increased logarithmically with each passing moment. And then a date was announced, Friday, March 13, 2009. We cannot speak to the level or intensity of the emotions that will continue to flood our hearts, minds and home; but it would be safe to say that there will be a sleepless night or two in the coming fortnight.

As always we thank you from the bottom of our hearts for the continued prayers, kind words and thoughts directed toward all of us and especially Evan as he deals with the internal battles of body and mind in these coming days.

On or Heroes Personal History front, the end of chemotherapy mean that Evan was able to receive his Arrow of Light from Cub Scouts (This is the highest ward that a Cub Scout can receive, and the honor is earned by working through a series of different educational and situational tasks over the course of 2 years study) and was then able to crossover from Cub Scouts to Boy Scouts with his friends. Evan was able to do this all by the slimmest of margins, 5 days, as he needed to be both 10 and have earned his Arrow of Light to achieve this milestone.

For all who have followed the Science Fair Saga: 2009 Edition, Evan’s project has been honored with representing Wake Christian Academy at the State competition in Wilmington, NC on April 23. The goal after surgery will be to be ready to attend and present his project there. Many thanks to all who helped with his project this year, especially Todd Christopher and Chris Rogalski of TPC Auto Wash Supply in Allen Park, MI who at Evan’s design and request manufactured a custom display stand for the computer.

And now the other shoe drops!

2009-02-13T21:21:00.000-08:00

After 3 course of chemotherapy, the tumor has not substantially changed in outward dimensions. The surgeon says it feels ‘spongier’ and on Tuesday Evan will have an MRI to determine the internal dimensions. Bottom line is that the chemotherapy is not having the desired effect and that now is the time to operate. Even though this was anticipated, and even though all avenues have been exhausted in researching this mass; it is still a shock to hear ‘wide margin radical excision with axillary node dissection’
In laymans terms this means that the surgeon will take out the mass, all the surrounding tissue with even the remotest of possible involvement, and also take the lymph node pathway(drainage system) to an area where there is no overlying birthmark. As the lymph system is the primary route for metastasis, by taking the lymph pathway to an area where there is no overlying nevus should render a lymph node without melanocytes, one of the calling cards of metastatic melanoma.
Surgery is being coordinated between Evan’s primary onco surgeon, Evan’s pediatric plastic surgeon and the UNC children’s hospital OR suites. Dr. Olilla is an adult melanoma surgical specialist which is why he has been the key member of Evan’s treatment team because of his experience. After this surgery he never wants to see Evan in an operating room again. However, as a surgeon on adults, he does not have OR privileges at Children’s Hospital. Dr. Van Allst is Evan’s Plastic Surgeon; and is tasked with reconstructing what is left after Dr. Olilla is complete with his tasks does have those privileges, so there is some coordination in the works. This is combined with the information that the surgery cannot happen within 4 weeks of chemo, and we have target date of – 2-3 weeks for surgery.
This development must be put into the right perspective. It is often said that minor surgery is what other people have. In this case, even that aphorism is understated. Evan as usual took the news like a champ, his one question behind closed doors was if it would hurt as bad as last February’s surgery. We don’t do lying very well, and the skin graft donor site last year was extremely painful for a couple of days. And the truth is ‘yes’ it will hurt as badly as it did before. Those are some of the toughest words to share with a child.
In a more casual note, Evan has qualified to take his computer to the NCCSA Science Fair in Wilmington in late April, and he should be physically ready to present. Tomorrow is his birthday party to celebrate his 10th birthday on Monday, and part of the festivities tomorrow is the Cub Scout Pack Pinewood Derby. Next week he will be able to receive his Arrow Light which is a very prestigious honor in Cub Scouting and signifies a great deal of work accomplished. On the same night he will crossover to become a Boy Scout at the Blue and Gold banquet. And one of the higher notes of positive events is that chemotherapy is now on hold until further notice. That’s the news of the moment, we’ll report more when there has been a chance to digest the details and we get some concrete scheduling.
PS. Evan’s mom, Lizy, really looks in her element as the new Head Athletic Trainer for the Carolina Railhawks USL1 pro soccer team, but that’s another story.

Update 2/2/09

2009-02-02T14:46:00.001-08:00

Evan is having a good day today. For that matter the past 8 days have been good days. We measure the quality of the day based on simple factors: presence of nausea, presence of pain, amount of energy and participation in events/activities outside the home.
Each Monday we take a trip to Evan’s pediatrician and have blood drawn for lab work. The numbers are available the following day and we have been charting the ups and downs of various numbers. While all the numbers are important for ongoing life, the chemo knocks the immune system off line for a couple of days and it takes his body time to replace these key ‘fighter’ cells called neutrophils. These cells are the primary component of a person’s WBCs (White Blood Cell). When these counts get to below 500/micro liter Evan becomes susceptible to infections that would require hospitalization to control. With each passing chemo treatment, Evan’s time in the danger zone increases; first round ~1 day, second round ~5 days, third round – we’ll let you know.
With that information as a backdrop; We are getting ready for his next MRI which will be done on the afternoon of February 17. Evan also has a return visit to the onco-surgeon on February 12, and his next round of chemo is scheduled for February 20. The visit with the onco-surgeon will be to review progress of the chemo and determine the next step in his treatment course. The MRI will provide a more quantitative evaluation of the tumor size and its response to chemo (Has it grown/shrunk and by how much).
On the homefront, things are busy. Evan was able to get his computer to school for initial evaluation for the Science Fair 2009, and he qualified for the next round. He continues to work on it, refining, repairing, improving, and correcting. He also attended Legopalooza at the Moorehead Planetarium at UNC, on the Scouting front he is building his final entry into the Pinewood Derby and getting ready to receive his Arrow of Light and crossover to Boy Scouts.
That’s the news for the day; pictures at 11; and right after that another exciting episode of ‘The Lobby Sherrif’

The other side of the Snowman

2009-01-21T09:47:00.001-08:00

The anticipation of today was offset by a snow storm of biblical proportions, by North Carolina standards, 4 inches. Today we are all sitting in our home away from home, the ‘code’ room of the Pediatric Hematology/Oncology clinic at UNC, but yesterday was a different story. School was on a 2 hour delay in anticipation of snow, so there was hope. Hope is a powerful condition, it carries the hint of success, the taste of victory, the whiff of wonderful; and a child and his sister prayed mighty prayers that school would be cancelled. 6 am school was cancelled, 2 inches of thick wet snow mixed with winds gusting to 25 mph had made the roads so hazardous that there were over 150 accidents in our area.

There is something bordering on a sense of high sinful pleasure when one cuddles up in a warm bed, comforter wrapped around you like an oversized Mexican burrito. Waking is a slow pleasure of gentle rising until one faces a window and sees the fluffy white stuff being wind swept into 6 inch drifts. Two possible emotional responses might be reasonably anticipated: 1. Who’s gonna shovel this @#$%#*! 2. Oh! That should be fun to play in. In the Piedmont of NC there is a ‘liaise faire’ attitude about snow it is born of two realities: A. Someday it will snow. B. We have neither the equipment, experience nor inclination to do anything about it. (It’ll all melt away within a day anyway) The other contributing factor to any lack of action was of course the inauguration of the 44th President of the USA.

Having been absent from this type of weather for three years, one might suppose a degree of wonder about the white stuff. What was expressed, gasps of surprise, slack jawed awe, and a real joy at the apparent miracle that God would not only bestow an additional day of rest (from school) but there was gonna be enough of the stuff to have some serious fun.

The wind whipped additional accumulations into place over the remainder of the morning, and in a post inaugural address revelation, the wind died and the sun came out, Wow! In a moment of pure childhood joy Evan ran barefoot into Snoopy’s Magic Food Room (Rather than feeding the hound from the table, we have established that table scraps may only be fed to said mutt in the screened porch off the back of house. As proof of Pavlov’s work, Snoopy stands eagerly in tail wagging fashion by the back door at every meal waiting for access to his Magic Food Room)

The errant run to freedom was met with 2 realizations: Snow is still cold stuff, even in NC; and that Evan is (In Russian accented English) Strong like Bull and Smart like Book! No, not book smart, smart like book! 5 minutes later, dressed with shoes, sweater, hat and shoes, our intrepid cold weather explorer set foot into the frozen tundra of the central highlands of North Carolina. 5 minutes later and dad was shoveling the driveway in NC shoveling attire, and Sissy was modeling the latest skiwear for the NC State Ski Team.

The peals of gleeful laughter echoing from the frozen edifices of the neighborhood only paled in comparison to the ear to ear smiles and rosy cheeks of the children having snowball fights, sledding, and making snow cream. When it only happens in a blue moon, the need to experience it all is overwhelming.
Snow Cream is a NC specialty for snow storms; take a 2:1 ratio of cream to sugar, add 1tsp of vanilla and mix in fresh snow till it develops a solid consistency. The microscopic nature of the snow makes the desert absolutely amazing. Thanks to our NC neighbors who introduced us to this treat. For never getting snow, they sure have the best recipe.

As the day ended, as you can see the sunset was spectacular. And the mariners saying came to mind, “Red sky at night, sailor’s delight; Red sky in the morning, sailor’s warning.”
Today began with the potentially treacherous drive over icy roads to the hospital. We left early and traveling mercies saw us arrive with the perfect time to spare. As pre-medications (changes were made to protect the innocent) were lined up like students in line for lunch we all (Doctor, Nurses, Rec therapist, parents and Evan) waited in almost breathless anticipation of what would happen next. Even when you know its coming, the interactions are difficult to address. The sense of muscle discomfort knows no remedy, no drug can make it go away, no relaxation technique will shed the burden, no tissue is big enough for the tears that fall. Only a drug induced sedation will calm the nerves of all involved. The vivid nightmares in coming nights will be talked through and cried into the shoulders of mom and dad. This we can all deal with, not the leg ‘cramps’ that know no end and have no respite.
As always, your prayers are deemed essential and the warmth of your thoughts a comforting blanket into which we might curl up into while resting by the warmth of a fire stoked in the hearth of our family’s love.

Pixie Dust, Fairy Magic, and Plastic Blocks

2009-01-17T06:07:00.000-08:00

For pictures please cut and paste to your internet browser- http://www.facebook.com/album.php?aid=6686&l=27094&id=1616041978
I would tell you a fairy tale of a boy from a land far away. Once upon a time when he was but a baby his Granny placed a small present in his stocking for Christmas. Inside that colorful paper was a colorful little box, and inside the little box there was a package of small plastic pieces in the brightest reds, yellows, blues and whites. Some graphics oriented instructions and a little effort had seen piece placed on piece and imagination blossomed into both a broad smile and a deep sense of satisfying peace. From that point on that little boy never met a LEGO he didn’t like or want to build, and in the safety of construction he found both a joy of purpose and achievement, but more importantly an escape from the pressures of every day. Pressures no child should be burdened with; pressures no adult would wish upon their mortal enemy; pressures from which there is no respite till a winner is declared. While fighting this battle his only wish, his only focus was to get to the place where he could build, plan and retreat with Legos all day long. That place was Legoland. There are only 4 such places of plastic wonder in the world: Windsor, England; Billund, Denmark; Gunzburg, Germany; and San Diego, CA. But how would he ever get there? Time was tenuous. Physical health was always a potential problem. It was over 3000 miles away; across a continent, past forests, through rivers and deserts, not to mention over snow capped mountains. All this stood in the way. It looked like it may never happen, or worse, that it might happen but only as a hollow victory as the night closed in on our young hero. Someone once said, “Pray as if your life depended on it, and work as if your life depended on it.” So he prayed and he prayed, and his parents prayed and prayed, and his sister prayed and prayed. And he worked on building his LEGOs, and his parents worked on connecting people and ideas together, and his sister worked on annoying him as much as he deserved.
As this is a fairy tale this seems like a good time to put a fairy in the story.
8 months after planting the magic seed, a wish granting fairy called Vanessa from the place called Kid’s Wish Network. 8 months is a long time for a 9 year old. 10% of life has passed you by, surely the wish, the dream, the very idea would have changed. Perhaps it would be to see an episode of Hannah Montana or a trip to Disney or the mountains to ski. Not so when your dream is held so closely to the heart, not so when the very fibers of your being are dragging your eyes toward California at every free moment. And I suppose in a twist on the Fairy tale, Vanessa called on 7 of her magical friends to make this wish change from a dream to a goal by setting a deadline on that dream. And those of you who know will understand when I say that the fairy did the work, but God provided the love and the providence to take that goal and make it a reality. 7 days before the planned wish trip, the little boy was just home from an unplanned 2 day stay in the hospital ICU from a medication reaction, then his blood counts were just on the high side of the border for travel (really low for the average young man – but this boy is nicknamed “RubberBoy” for his resilience and bounce back ability.
And this is how it was done and how those 7 magical friends helped make that little boy the happiest person on earth, if only for a moment. It was a moment that will be lived in and out of every day from that moment on.
The first magical friends were the pilots, attendants, gate personnel and baggage handlers of American Airlines. The finest professionals made everything as easy as possible. A pillow, a blanket, smooth take-offs and landings, the prompt arrival of bags, all this and so much more. I suppose we expect them to do all these things and more each day, but for the boy in the middle of living his dream, every courtesy was afforded. No funny looks at masks or missing hair, just smiles and lots of help. This magical team took him to his dream and escorted him home so that even as sad as he was to leave, they left him smiling and inquiring of his next trip to the land of his dreams.
As American Airlines delivered the boy and his family into San Diego, the torch of support was handed to Hertz as they provided the gleaming Maroon Steed of Travel to the boy’s family. The trusty transport was a minivan big enough to take not only the boy and his bag; but the rest of the family, luggage and he swore he heard his father question the need for an Iron and Kitchen sink, but that could have been the Pacific Ocean lapping against the shore of the harbor wall or was it Mission Bay. For 5 days this valiant mount carried the boy from one end of San Diego County to the other, back again and across the county as well.
As the boy was driven up I-5 towards and into Carlsbad, he came face to face with the place he would call home for 5 nights. The luxurious La Costa Resort and Spa was only exceeded by the grace, courtesy and service provided by the staff (A warm glass of milk and three of the biggest cookies on arrival). It was only here that the boy grew mildly distracted from his quest, he wasn’t sure if it was the early morning dip in the steam shrouded heated pools, or the 3 x 50 inch plasma TV’s or the incredibly comfortable King size bed. His mind was refocused as he became hungry. His hunger was driven by a deep seated drive to accomplish his lifelong dream, and hunger from not eating because he was playing so hard.
Every Fairy Tale should have a twist or two or three. For the little boy the twists came in seeing family and friends while in the area. Time was set aside to meet his mom’s Aunt Myra, Uncle Dave and cousin Dave and his wife, Jocelyn, on the first night. The second night brought a reunion with Nana and Poppa who had travelled from Asheville, NC to San Diego to visit friends in a most serendipitous meeting. Then on the third morning was a breakfast with his “Big” brother’s sister, Sarah. Like a great meal, each meeting enhanced the flavors and experiences of the whole glorious trip. Wow!
It would be easy to suppose that when you live in the land of childhood dreams for any length of time familiarity might breed contempt, or the weather was so unseasonably cold that the staff was frozen, or most likely the staff just paled in comparison to the 41 brightest of bright shiny ABS plastic bricks. None of that mattered. There was a 38 step action plan/agenda to ensure fulfillment of every aspect of the little boy’s dream. As sure as one might be that the Pope is Catholic, one could be reasonably sure that nothing could top the first day in Legoland, but you might be wrong.
After the wish was completed on Day 1, what was left to do? Get some marvelous pizza at a magical friend’s place, and so the little boy, now sated on LEGO for the moment almost fell asleep in his pizza at PRIMO’s in Carlsbad. He was waited on like a king, and the food was delicious for those that remember it. 3 chefs and 3 wait staff kept things moving along, and the boy’s father caught the middle of the BCS National Championship game on the TV in the corner of the room.
Day 2 saw the completion of the agenda, and as things were winding down in Fun Town the little boy had the fires of his imagination stoked and fueled as he went through the LEGO Factory Tour. After this little stroll through manufacturing the little boy settled into Pick-A-Brick. Name a color, they have it. Name a piece, they have it. And since they were selling them by the pound, why not get a pound or two. While this seeking and sorting was going on, a little bird had a little word with a very special friend. Renate, a lifelong LEGO fan and long time employee from Germany, heard that time might be short for the little boy. Renate then exceeded all possible wishes and dreams; she took the little boy back behind the scenes. She showed him how the LEGO’s are made, then she let the little boy make LEGO’s, then sort the bad ones out. Then she helped him make original LEGO statues from real LEGO ABS plastic. She put the real human face, the embodiment of love, excitement and imagination back into the plastic. All of a sudden the dream that had been, became the dream that was reality and laid out a new dream for the future. Happiness and Peace found in connecting cold pieces of colored plastic was now joined with the warmth and huggable Love of a friend who made the dream-into-reality become the reality-into dream, again.
Dinner after the second day at Legoland was hosted by the fifth of his magical friends, the Rockin’ staff of Ruby’s Diner a 50’s themed burger joint. The burgers were huge, the shakes were bigger, and the clown animals and paper boxcars made the evening complete. A evening constitutional through the mall, and a handpicked orange off the trees at LaCosta allowed the day to wind down slowly and for one set of emotions (Joy, glee, WOW!) to be switched for another (Sadness, gloom, despair) as it felt that all reason for living had been sucked out of the little boy as he had no more dreams to seek out.
Seaworld was our 6th magical friend, but even the splash of 8000lb Shamu the Killer Whale could hardly bring a smile to the lips of the exhausted and leg weary young man (little boys have not had to face the fading of their dreams into the sunset of by gone days) But as the sun soaked in, and the Santa Ana winds began to pick up, there was lunch. Breakfast is one thing, but a lunch buffet will really add some energy to your day, especially when you’re eating less than 10 feet from where Shamu and family are also eating. Add in a little feeding of Sea Lions and Dolphins and you have an exciting day. Walking under sharks in a glass tunnel will also provide a certain exhilarating bounce to your step. Just what the doctor ordered to take the edge of a slightly tired and down day before heading back to home.
The young man’s last dinner while on his trip was hosted by his magical friends at Chili’s in San Diego. The food was great, and the service better. It was just the right kind of quiet end to a quiet day after the very emotionally charged three preceding days. If he hadn’t needed to get up at 3:45 the next morning, the party would have gone on for hours.
Dark and early (Bright is not appropriate at 3:45 am) the next morning the young man said good bye to his friends first at La Costa, then dropping his trusty steed at Hertz, and then began the steady journey with his first magical friend become his last as he boarded the American Airlines flight from San Diego back to Raleigh.
He may have left a little boy with his eyes full of wishes and dreams, but he returned fulfilled as a young man. Now his eyes are filled with possibilities and goals; always he looks forward with hope. Now to add to his hope is a taste of dreams come real that will fuel his drive forward, thanks to a good fairy named Vanessa from the land of Kid’s Wish Network.

Legoland or Bust!

2009-01-06T19:06:00.000-08:00

Like an adult in Polar Express, I am having a difficult time comprehending the attraction of a theme park built around plastic building blocks. Ah! If only the bell would ring again for me. But this isn’t about me, it is all about Evan and his wish. Monday we received the go ahead (Evan’s blood work was okayed) and thanks to Kids Wish Network and their sponsors we will be leaving for San Diego in the morning. We promise to get lots of pictures, and Evan has generated a 38 point agenda for our time in the park.
Your prayers have us floating on a sea of blessings, and the strength and peace you send out are received like water on the parched summer grass of the Piedmont of North Carolina. Without this spiritual sustenance we would be unable to take this trip. Thank you, each of you is a blessing to us from God.

Home at Last!

2008-12-31T22:55:00.000-08:00

Happy New Year! I am so sorry to have left everyone hanging in suspense over what happened in the last 36 hours, especially since we have been at home for the past 24. Those of you shoot vacation videos will understand the dilemma: Should I take the shot for others to see what we’ve done, or should I live the moment and share the memory. There is no real option for us, and unfortunately our e-mail server has been down and so the e-mail synopsis has not been as easily distributed. (Lizy puts out a short email with a play-by-play while it is my job to add the color)
An hour after the last post, chemotherapy was restarted, as expected the annoying itchy rash returned, but Evan had been sedated and slept through the rash without any anxiety or itching. And 30 minutes later, the rash resolved itself. Chemo was kept running at 10 ml/hr through the night without incident. Evan woke on Tuesday morning wondering why he was in the hospital and when he could go home, ate a good breakfast and tried to patiently wait for the infusion to be complete. Starting at 9:00 am the dosing was increased 10 ml/hr until 2 pm when it was moved to 60 ml, and then to 100 ml/hr for the last hour of medicine 1.
In preparation for medicine 2 Evan began to develop hives, itching and anxiety again, at the same time as a pre-med was being administered. This was the same medicine which had been hung in premed the other 5 attempts at starting chemo, and the one med which had not been running during the day. Ah Hah! As we have again experienced the same reaction at home this evening when he took the medicine for some nausea onset, we believe that this will lead to a positive change moving forward. The second medication went in without trouble as Evan had been given an ant anxiety medication that sedated him for the evening which only became problematic when we had to move him from car to house when we got home. Today has been quiet and relaxed, a nice surprise of opening up two boxes of games and toys from Kids Wish Network.
We hope to be going to San Diego next week (Assuming blood counts are in line) to visit Legoland thanks to Kids Wish Network. It will mark a great way to start 2009.
A look back on this year is not easy, but upon closer inspection we can find some real nuggets of gold. The type of gold that you can’t buy or sell. The crafting of this gold that takes hours, days and weeks to work into wonders of strength and beauty. This gold is the color of friendships (far and wide) and family (near and distant). This gold is love, its source is Our Father in heaven. It is not all that He is; but it is His medium of choice for us to work in. And His example to model after is stunning, beautiful and timeless. And more important is the fact that all we have to do with this material is to acknowledge its source. His pleasure is in seeing us try, and like a parent watching a child finger paint He enjoys the look on our faces when we smile at doing something ‘pretty’ on our own..
This year we have received the gold of love in abundance, and we hope that through this writing and Evan‘s story; that you might take some of our gold and share it with those around you. And now we wish you many blessings for the coming 12 months, and we’ll be sure to post pictures of LEGO’s in abundance upon our return.

A Long Day's Night

2008-12-29T19:20:00.000-08:00

Its 9:18 pm, Monday December 29, 2008 and as I write this I am sitting at Evan’s bedside in the Pediatric Intensive Care Unit (PICU) at UNC Hospital. In the past 10 minutes the night nurse and her assistant prepared the room for an overnight code. While this is just precautionary, it indicates in no uncertain terms the fine line between life and death that we are walking when it comes to Evan’s health. Today has been long, challenging and is not yet over.
This is the other shoe dropping. For the past 24 days Evan has lived an almost idyllic first round of chemotherapy. There were some initial side effects; mild nausea and some minor aches and pains to name them. Otherwise he made it to school 9 of 10 days, got his homework done, made it to his Pack Meeting, celebrated Christmas at home, and built LEGOs everyday thanks to some very generous friends and Santa. To top off the last day before his next course of chemotherapy he finished building the computer for his science fair project. His blood counts dropped as expected and then began their recovery. The only downer was his hair falling out on Christmas Eve. Even that challenge had been lessened by pre-cutting his hair with an electric trimmer, and his friends (Jack, William, and Andy) shaving their heads, and his dad, Den Leader, and Assistant Pack Leader also providing follicle support.
And then there has been today. It started out relatively normal; a little sluggish out of bed, breakfast on the fly, mom and dad slugging coffee on the way to Chapel Hill. We were greeted with good news, while a tape measure is not an overly reliable measuring tool for medical purposes, the tumor has apparently responded well to the first treatment of the chemotherapy protocol. Evan took his premeds like a champ, and his blood values came back as strongly as the first day he had chemo. Then things started to happen out of the ordinary. An unfortunate initial reaction to a premed - vomiting. Then there was a 2nd reaction to his first start of chemo (Evan’s protocol calls for one drug of 572 ml to be administered over 3 hours, and a second over 1 hour. The first drug has been known to cause anaphylactic shock as an immediate side effect and so there is considerable premedication) This second reaction involved hives, vomiting and a very fast heart beat. After stopping infusion and restarting at a lower rate there were 2 additional reactions and the determination that the dosing would have to be much lower slower and that Evan would need to spend the night.
Since that determination, the chemical cocktail has been enhanced with a variety of anti-nauseals, anti-histamines, H2 blockers and anti-anxieties in an effort to start the medications in a manner that will not create a reaction. At the planned rate of infusion for attempt number 5 (it might be 6, I’ve lost count) it will be another 40 hours before the first medication is complete, that is before we get to medication #2. That would put discharge at 2 pm on New Years Eve. Happy New Year!
Thank you for the ongoing blessings of your prayers - Evan and family.

Hey, is the car cold or is it just me?

2008-12-08T13:35:00.000-08:00

Over the past year this blog has chronicled the life of Evan Coleman as he has undertaken a battle with cancer. He is a bright (full of life and intelligent) young man with more courage in his little body than seems possible for his size. What has transpired over the past week and is ongoing as this is written might be termed the ’Transition’ from investigation to action. While surgeries before have had the stated objective of ending this war, no attempt has encompassed such a broad and sweeping attack, nor has his life been in more jeopardy than it is over the next couple of weeks. This entry has the potential to get away from a simple and clear explanation; and instead end up as a tiring emotional discourse. This unfortunately might best reflect the emotional and physical state of the Coleman home as it exists today. But instead we have assembled multiple perspectives to share clinical facts and raw emotions from both Evan and his parents.
THE CLINICAL:
On Monday 12-1-08, a one hour operation resulted in a port-a-cath central line being placed for easy chemotherapy administration and blood draws. The operation was successful and without complication or issue. Chemotherapy had been slated to begin Monday 12-1, then moved to Wednesday 12-3 and finally to Friday 12-5. The delays were directly related to making sure Evan’s care came first. The chemo cocktail is a rare combination in pediatrics and requires close attention, considerable premedication and access to a ‘crash’ cart (In ~20-30% of patients, there is an anaphylactic reaction requiring immediate emergency medical attention, the crash cart has all the necessary supplies for an emergency resuscitation.) For all the preparation the most anxiety came from the premedication. The high doses of premedication to avoid the worst side effects of the chemotherapy resulted in an anxiety driven case of cramping sensations. This was resolved with Ativan.
4 hours of Taxol and 1 hour of Carboplatin and Evan was on his way home. Heavy doses of anti-nausea medications for 24 hours, coupled with rest and relaxation have Evan back to a relative normal for today (Sunday). Next round of Chemo set for 12-29-08 based on blood counts to be taken 12-15 and 12-22.
EVAN’S PERSPECTIVE:
12-1-08: Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Well at least the nurses are nice, but Mom and Dad seem a little tense. Hey, there are some really cool things in the oper. . . . Dad, is that you? Am I done? And what was this for? What’s chemotherapy? No more IV’s, cool! Mom and Dad need to settle down, aren’t I the patient? Get over yourselves already. Oww! My chest hurts. Ahh. . . Tylenol, Ahh . . . Sleep
12/2/08 Tuesday - Pain, 12/3/08 Wednesday - Discomfort and port awareness, 12/4/08 Thursday - Anxiety, questions and when can they take off this gauze blob on my chest? 12/5/08 Friday. . .
Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Holy Toledo. . .they are going to poison me to kill a disease I don’t understand, what the . . . Are they insane? Nice try at the whole ‘comfort’ thing, Dad, Mom . . . Yeah, you guys go and talk to the doctor. . .Hey, nice lady, what are you doing with that port? Why am I on this bed in a separate room? Aren’t all the other kids walking around? Hey, something is not right. . . Something is really not right. . . Mom! . . . Dad! . . . My legs are cramping and I can’t stretch them out . . . Make it go away. . . DON’T TOUCH ME! . . . Now its in my arms and hands. . . MAKE IT GO AWAY . . . IT HURTS . . . DON’T TOUCH ME. . . . Yawn. . . . Sleeeeeeeep. Hey can I get my computer? Can I get some lunch? California Rolls please. When can we go home? The port access, gauze and nasty tegaderm are gone and I’m outta here.
12/6/08 Saturday - nice and easy, a little blasé, light nausea in the evening.
12/7/08 Sunday - nice breakfast, easy and light on the snacks, internet access and Nickelodeon. A shower - hot and sweet, a little nausea but basically back to . . . Hey my webkinz pets are still alive.
THE PARENTS VIEW:
Monday - Thursday 12-1 to 12-4 : When will this be over? Is this what it felt like for Abraham as he took Isaac up on the mountain? I would rather drink hemlock than have to do this. Where do I look for strength? Can you not cut me a little slack? Whoa! Wait up! A year of walking together, why are we taking separate paths now? Is this when personal interest overwhelms the need to serve others? That was ugly. Let us pray. We’ll need all the strength and connection we can get.
Friday 12-5: Off we go. He’s kinda tough to get up this morning, but maybe that’s best, we’re a little tense. Nice quite ride to the hospital and up to the pediatric oncology clinic. Infusion start in the ‘Code’ room.?.? Possible reaction. . . Dexamethasone . . . . Benadryl . . . Zoll Debibrillator . . . Crash Cart . . . ER Gurney . . . ANXIOUS . . . FEAR . . . EVAN WHAT’S WRONG? PRAY . . . PRAY . . . PRAY . . . ATIVAN . . . PRAY . . . PRAY . . . Sleep . . . Peace . . . Tension easing . . . Evan your back . . . California rolls, you bet . . . Let’s go home.
Saturday 12-6: Taking it easy, working together, friends with food and coffee. Managing nausea and fatigue, his and ours. Quiet movie night, Thanking God for our friends who have kept Morgan active and involved in her activities.
Sunday 12-7: Breakfast, writing, decorating the house, answering computer building questions, math homework, language homework, thinking about school. Reality of low blood counts and decreased immune system in 7 days setting in.
Sunday Evening and Monday Morning 12-7 to 12-8: First clear side effects challenges
To Thank you for your thoughts, prayers and love.

A time for Thanksgiving

2008-11-26T05:39:00.001-08:00

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

Its GameTime!

2008-11-17T07:37:00.000-08:00

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

Friends, Neighbors, Baked Goods and Video

2008-11-05T04:20:00.000-08:00

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

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

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

Where to go from here?

2008-10-27T11:11:00.000-07:00

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

In the latest episode of medically inspired geo-adventures of our hero; Evan ventured into the Big Apple. One more time, thank you to all who have so generously given that we can find time to distract him from 400 lb gorilla in the room. We would list the sites, but sometimes its just fun to see the pictures and put the sites in your own words.

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

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

2008-10-21T19:15:00.000-07:00

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

No news, Good news, and Bad news. . .

2008-09-27T09:53:00.000-07:00

Another interesting day in the medical life of Evan Coleman. Friday, September 26, 2008 saw Evan in Detroit seeing Dr. Tor Shwayder (Pediatric Dermatologist) where photos were compared from 6 days of age to 6 years of age to current time. Conclusions. . . fascinating situation, no historical context, consider seeing Dr. Marghoob, consider CGH of 6 week sample from same area on Evan's back, and continue to wait, watch and see. At the same time in San Francisco, Dr. Bastian (Geneticist with interest in pigmented lesions) was getting his first draft of his report ready. Dr. Bastian was kind enough to give us a call with the preliminary results, medical conclusions and proposed plans of action.
We haver not received his final written report, and so the information shared here is paraphrased from a half hour conversation while the author was driving down a freeway during Detroit rush hour.
There are chromosomal abnormalities, but they are not consistent with melanoma. The histological presentation is sarcotamous (like a sarcoma – soft tissue malignancy). There is no record of any person having a sarcoma arising in a GCN. When given Evan's clinical history, Dr. Bastian expressed a profound curiosity and offered to study not only the current tissue, but could we get tissue from the original sample taken when Evan was 6 weeks old. This he offered to do of his own volition in his private lab. His gut instinct is an atypical proliferative nodule with sarcomatous presentation, something that has never been seen before.
In conclusion our fears shift from one type of cancer to another (melanoma to sarcoma), testing will continue, and we continue to be vigilant observation concentrating on lymph or glandular involvement, areas of breakdown, and generally protecting the area in question to avoid unnecessary contacts and traumas. Thank you for your continued prayers. We find ourselves continuing on the path of the unknown, and your thoughts and prayers offer constant light to our way.
Combining work with pleasure is a requirement for a young man on the go. So Evan engaged in some fun activities with friends and family while out of town. First he went with his friends Courtney, Lily and Ethan out buying property in Detroit. As you might have heard, property values in Detroit are not what they used to be. Here, Ethan is acquiring a couple of homes for $200. Following a late night out on the town with his friends, it was a relaxing tractor ride into the orchards of Michigan to pick bushels of apples with family. Later today Evan will be cutting up the dance floor at his cousin's wedding. No pictures at this time, and the videos may be classified, but we'll try to smuggle some into the blog for the next episode. Till next time . . .

Please Stand By. . .

2008-09-11T12:53:00.000-07:00

And the latest news from the lab is. . . please stand by, we are having technical difficulties. The coinciding of our need for genetic analysis fell at the time when technicians critical to the process had scheduled their vacations. As a result of these delays we have been told not to expect results before September 26.
In the meantime, we felt a brief musical interlude was in order, followed by a biographical snippet from Evan’s sister Morgan.

EVAN

by Morgan Coleman 8/28/2008

We live in fear of a monster. Days go by where not a word passes our lips, but we know it’s lurking in the darkness, waiting to pounce on its prey, my brother. We anxiously await the tests, which currently reside in San Francisco. During this process, we wait, weep and pray. We know God is in all of this somewhere.
We all knew something was there ever since he was born. A giant congenital nevus. On the nevus a small bump which was biopsied after six weeks. But exactly a year ago August 28th, while running around in church, the bump got bumped. But not just bumped, more like brutally squashed. Overnight, it grew three times its original size. That night I felt so guilty because I was the one chasing him which caused him to rum into a chair. It was not a question, the bump was coming off. Not only because it was hazardous to his health, but it was one of the worst pains he had and would experience.
On November 15, 2007, he had the surgery to get the bump removed. They couldn’t remove the whole nevus because it covers from his neck to lower back and wraps around his flanks. The doctors estimated surgery time to be an hour and a half. It turned out to take 3 hours. I was in Mrs. Soto’s class when my mom called to tell me Evan’s surgery was over and they were still waiting for him to wake up.
On November 28, 2007, the diagnosis was back. Malignant Melanoma, the rarest of all cancers. Pediatric Malignant Melanoma occurs in 1 in 3 million people between the ages of 0-20. The giant congenital nevus occurs in 1 in half a million. So his condition specifically is 1 in 1,500,000,000,000 (1.5 trillion) and will probably not occur again in our lifetime. After this event, my parents initiated a prayer chain. We notified family, friends, pastors and employers. We began to research and gather medical input. Evan had a PET/CT scan of New Year’s Eve 07. The results came back negative, that very night. We were overwhelmed with relief and ready to start the year anew.
A little into the New Year, we were finding some interesting articles; but we were told they weren’t of much use after being and were rejected by the medical team. Instead Evan had what we were told was a Wide Margin Excision on February 1st, 2008, which required a skin graft. A week later, he went back under for a dressing change.
On May 15th, he had another PET/CT Scan. The results were still negative. But a new mass was visible to my parents. They were determined to keep and eye on this. On June 15th, the mass had grown. My parents sought out surgical consult the next day, and on June 17th they had a biopsy taken.
Unfortunately on June 22nd, the results were back, positive. It was here, it was real, and it was cancer. I remember, it was a Thursday afternoon after a long day of being in charge of the 1st grade class at my church’s VBS. My “co-worker” came with me to my guitar lesson later and we went shopping at Old Navy and got matching shirts. We came home and watched my favorite comedian on DVD, and that lasted about 2 hours. Then there was a phone call that my parents picked up and mysteriously a half hour later my friend was suddenly picked up for and unexplained reason. My parents told me to wait in the bonus room while they talked to Evan. I had the feeling in my gut what it was that they were about to tell me. My mom called me in. She had red, puffy eyes and so did my brother. They told me everything and I was speechless. I wasn’t the same person for about a week afterwards, and it wasn’t even me who was diagnosed. Oh, how he must have felt. But it brought everyone to tears when Evan piped up and said, “Its ok, Mommy. If I die, I know I’m going to heaven.” These results brought us shock, panic, fear, anger, guilt, commitment, grace and faith.
Ten days later, the medical team introduced an oncology surgeon. He suggested a wide margin excision (hadn’t we already had that?), which we were told, if done right, is life-threatening. The surgeon also recommended a second opinion, which we looked into.
That same day my dad got an invitation to present Evan’s case to the Nevus Science group on July 10th. The next morning the doctors also scheduled the wide margin excision, for July 10. But we declined.
From July 9th-11th was the Nevus outreach convention in Dallas, Texas. I thought it was kind of funny how people scheduled a conference for a bunch of people with a pre-cancerous skin condition in the middle of the summer, in one of the sunniest places in America, but whatever. Our family hope is restored because the literature we found previously was actually valid. We continue with caution.
We find a new medical team at Texas Children’s Cancer Center, which is the world’s leading children’s rare tumor specialist team. At this point a new plan is developed.
On July 16th, we started shipping pieces of Evan around the country. The tests will take four to six weeks.
On the first of August, the tests begin. The earliest we would get an answer is August 29th. This brings back one of my favorite lines from the movie Evan Almighty. “When people ask for courage, does He make them courageous or does He give them the opportunity to be courageous? When they ask for patience does He give them patience or the opportunity to be patient?”

THE END

Summer of Fun vs. Anxiety of the Uncontrollable

2008-08-10T09:59:00.000-07:00

A musically gifted frined from NY shares a lullably

It is difficult to watch a summer come slowly and unceasingly toward its end. This year perhaps more so as we savor every hour of every day not knowing what is yet to come. The feeling here is one of nervous anticipation, a calm before a potential storm, the hazy days of summer making way before the possibility of a hurricane.

Evan sitting on the Texas Children's Gecko

Here are the facts. We have chosen a plan that involves waiting for genetic results. That we wanted this testing done 8 months ago is spilled milk or water under the bridge. The results will be back sometime in the first 2 weeks in September. The offending cells have not gone away and a new mass is forming in the same location as the older removed lesions. Every physical symptom (feeling cold, feeling hot, aches, pains, a cough, etc.) is filled with anxiety and guilt ridden doubt. Evan does not have any swollen glands (a good thing) he continues to act, play, practice and act out just like every other 9 year old boy.
This portal for information is increasingly challenging to maintain. We have a plan, but the eager desire for information on our part is echoed, mirrored and amplified by the sincerest of question, “How’s Evan doing?” To maintain a degree of normalcy we throw ourselves in to the activities of the moment, leading hyper-active lives. Authoring a blog about the trials and tribulations facing a boy and his family as they face the black cloud of rare childhood cancer is not normal. So, we throw ourselves into work, play, study, preparations for the new school year, and for the moment we prize every moment in an effort to pry a little more life out of every minute. We have an understanding that to dwell on the unknown, the uncontrollable is to fall firmly into the old Chinese proverb, - Anticipation of death is worse than death itself. We must seize the day, Carpe Diem. After all the past was yesterday, tomorrow is the future, and God has given us this day, that is why it is the Present. This is the day that the Lord has made, and we shall be glad in it.

In the meantime, cousins come from foreign lands (Carew and family), other cousins get married (Matt & Melissa, Beth & Tim), another cousin came from another state to visit (Meg) and other cousins email (Gareth and family, Jeremy, Katie & Riley) And we are about the business and joy of lives being lived. For it is a more pleasant place to reside in the joy of today than to seek out the deep dark, morass of the ‘What If’s?”
To all who have emailed Evan at Evan@e-nevusnotes.com, thank you. To all who have and continue to pray for us, thank you. To all who have brought meals, or invited us to break bread in their homes, thank you. To those who have given us their hard won PDO and PTO, we say ‘Thank you’. And to all who have donated monies to “Evan’s Fund”, thank you.Food Glorious Food . Meeting friends in West Virginia

IN THE LATEST EPISODE OF OUR SERIAL, WE FIND OUR HERO . . .

Evan had the most awesome time getting a personal private tour of the CISCO international headquarters and lab. We’re not sure if our tour guide will get in trouble for sharing this news, but Evan couldn’t stop talking about it for the next two days. What an awesome friend, the masked man of CISCO shall remain our secret, but way cool. Lunch at the world headquarters and then half an acre of rack mounted servers and networking. Evan has his eyes set on a future employer.
The plans for the Science Fair continue. For a brief history, 2 years ago, Evan built a LEGO robot and programmed it as part of a demonstration, deemed too young to have done it by himself, he did not place. Last year after writing to businesses, accumulating all the parts, and building the experiment he demonstrated and scientifically broke down the energy and financial benefits of different types of lighting (Incandescent, CFL’s and LED’s) 2 years younger than the oldest competitors, Evan placed 4th in the State of North Carolina. This year he wants to build a new computer (he already built his first in 2005 and is still using it) Not only does he want to build it, he intends to video/photograph the steps, and present the project on a multi video display using presentation software detailing its construction, it’s features and it’s benefits. Here is Evan’s long awaited list of supplies to be acquired to begin building his computer.

Zalman Reservator 1 V2 fanless water cooling system (www.xoxide.com/zalman-reservator-1-v2.html)
Gigabit Desktop Network PCI Card
PCI Multichannel Sound Card
N1 wireless desktop card
Sunbeam UV LED UV Blue reactive clear case
ATX Full size motherboard
Quad core or similar CPU
Video PCI card capable of HDMI, XGA, DVI and S-video
4 GB ECC RAM
Tuner card
DVD Combo Drive
500 GB internal HD

From a parents stand point this is over the top, outrageous, and completely awesome. How or why would one discourage this sort of creative ambition in a child? So, if any of you, the readers would be interested in encouraging this behavior, please contact Evan by email (Evan@e-nevusnotes.com), I’m sure he would love to hear from you, and share the mad grandeur of his plans.
Thank you to Meg for giving the family a reason to go to the beach, here are some pictures of Evan in his Australian surfer/sun suit playing in the West side of the Atlantic Pond

Morgan, Cousin Meg, and Evan

Evan, just waiting on a wave

We're Back!!!!

2008-07-15T20:00:00.000-07:00

The potential for the length of this blogpost might use astronomical units for accuracy of length. If we thought the previous weeks were full of information, they could not hold a candle to the amount of knowledge we gathered in 3 days in Dallas, and 1 day in Houston. I will for the sake of the reading publichit the high points here, share some pictures, and most importantly move Evan's email address to the top.

Evan can be reached at Evan@e-nevusnotes.com.

1. The conference was awesome. Tons of information, coupled with new friends, old friends and the laughter of children.

2. The Nevus Science Group had some answers. The literature we brought forward was not discounted, but embraced. Evan's case grabbed their attention, and they advised slowing down and getting the CGH testing done to find out what the mass is/was. PS it can be done on older fixed tissue, not just live tissue as we had been lead to believe. (The article in question presents a process for determining whether a growth in a GCN is either a benign nodule or malignant melanoma at the only differential level, the genetic level)

3. Statistcally speaking, in an amusing misapplication of math, If Evan had a dollar for every likelihood that he would not have his 2 conditions (MM and GCN) he would have $1,500,000,000,000 or slightly less than the US national debt. The risk being ~1 : 1.5 trillion!!!

4. The geneticist at UCSF confirmed that the CGH testing can be done from fixed tissue (already taken out). It takes 4-6 weeks. It can 100% confirm MM, or 85% R.O. MM.

5. The compassion, support, caring and love we felt in Houston was amazing. There are no quick answers to Evan's situation, and the rush to do something needed to give way to a slower more methodical and 21st century approach. It was given in a 19th century soothing bedside manner. We saw 3 specialists in 5 hours. Our question, "Do we have 8 weeks to get the CGH testing, or do we need to operate NOW because this has life and death implications in that time?" The answers: Oncology - take the time; Dermatology - take the time; Surgery - take the time, but if I see something that needs immediate attention, I'll tell you immediately.

In the coming days we will expand on each of the previous items, but for now you know the gist. In the meantime, we'll leave you with the advice of Matt Luke, a retired MLB player who has a nevus on his face. Survival and thriving in the world is based on a 4 level life. One level is family that loves you, encourages you and shares this with you every day. An second level is a close group of friends who accept you for who you are, or who you are not. The third level is finding the thing you are most gifted or talented and accept this calling with a passion. But the most important is the base level found in one's faith. While we hope that you have each found your faith base, we know that you are part of our extended famly lifting us up in thought, word and prayer.

Thank you

4th of July - Evan Independence Day

2008-07-09T03:54:00.000-07:00

Today we're off to Texas, where ev'rythang's . . . We'll let you fill in the blanks. We just wanted to leave you with some of the fun of the past weekend. North Carolina Symphony & the city of Garner fireworks; and the Carolina Mudcats game and fireworks. Thank you Cindy Elliot for helping us capture the moments.

Evan & Mom

Small Group at the Shrine of the Bat

The Three Amigos: William, Evan & Andy

Two of Evan's youngest and most ardent admirers, Tommy and Megan Elliot before they took the field for between inning antics as trainees of the Muddie, the Mudcats's mascot.

If you have images of Evan and would like to share them, please drop an e-mail to Paul @e-colemans.com Thank you for all your prayers.

7 long days = Too much information

2008-07-04T13:01:00.000-07:00

If we felt that things were approaching overwhelming with the diagnosis of recurrence, then we obviously underestimated the avalanche of stress that was yet to come. There comes a special strength from our faith, an inner power that carries us through and undergirds our resolve to continue forward on this journey even when it feels like the very flames from hell are nipping at the edges of your soul. Without this support we would be lost, we cannot imagine this passage without our family, faith and our friends.
We have not had much sleep these past seven days. Between the myriad of emotions that accompany grief, we have enjoyed spells of intense family time and pure happiness in a child’s laugh that would warm the heart of the coldest person. Many hours have been spent in research, contacting friends, and friends of friends. Some people have offered connections, some have been candid in their lack of knowledge, but everyone has shared their love, thoughts and prayers of support. All these efforts culminated in consultations at Duke July 2-3.
The consultations were the direct result of our “Patient Advocate” Dr. Greiner, the Pediatric Oncology Chief Resident, truly warm hearted man. His understanding of the appropriate clinical approach was to go to the NCI protocol for rare tumors and recommend a complete wide margin excision. This entailed introducing a new surgeon to the team, the Pediatric Oncology choice for tumor removal, Dr. Rice.
On day one of the consultations, we (Evan, Paul & Lizy) met with the chairs of Pediatric Dermatology, Pediatric Oncology, Dr. Rice and Dr. Greiner. The gist: 1. Dermatology would look into getting the requested genetic panels of the tumorous tissue (the third time we have asked); 2a. Oncology has no way of tracking the mass (it was visible at the surface, but did not show up on the PET/CT scan) and 2b. No suggestions on how to treat it beyond surgical rescission; 3. Surgery said that the National Cancer Insitute (NCI) protocol dictated the excision of tissue (in the general shape of the original ‘Wide Margin’ excision) down to beyond the chest wall to lung tissue.
It does not matter how prepared you are to hear this news; it just takes your breath away. It was news we had been dreading since wide margin excision had been discussed in January and we had been relieved when we had been told that it wouldn’t have to be that deep. So now, knowing what was coming, and having confirmed this with the National Cancer Institute protocol. We still felt like we had been kicked in the gut.
This is the sort of Major surgery that would get anyone nervous, and likely scared silly. It involves taking a child, who looks and acts like nothing is wrong in the world, and subjecting them to an extended surgical procedure (1 day for excision, 4 days with an open surgical site, 1 day of reconstruction, and 2 weeks of further hospitalization). I suppose it’s no wonder that Dr. Rice recommended a second opinion, but who?
During the course of research, what we were told by numerous clinicians regarding Giant Congenital Nevi (GCN) and a relationship to Melanoma did not seem to be borne out in the conversations within the forums/support networks for people dealing with GCN. While there were cries for support for neurocutaneous melanosis (NCM), its detection, MRI’s, mean people, and surgical procedures to remove GCN in small children; there was only one cry for melanoma support before ours in the last year, and that was from a 2 year old in New Zealand who passed away after developing melanoma after a dermal abrasion procedure when she was 6 weeks old. When this detail was brought to Nevus Outreach Inc., Paul was asked to come to the biannual conference in Dallas to speak to the Nevus Science Group on developing both a statistical breakdown relating to melanoma, and the addition of genetic panels of people with GCN to the Nevus Registry. The Nevus Registry is the largest databank of information on people with GCN; it is filled with the clinical histories, treatments, outcomes, and cellular histology.
That conference is July 9 – July 12 in Dallas, TX. Surgery has tentatively been scheduled to begin July 10. Dr. Pappo is at the Texas Children’s Cancer Center in Houston. Dr. Rice is recommending a second opinion. Where’s the money for a trip to Texas on short notice going to come from? (Note to self: Co-Pays on PET/CT scans, which don’t work, are very expensive. Second note to self: Co-pays on ineffective surgeries are more expensive. Third note to self: Six month reserves for emergencies run out in six months.)
Family and friends to the rescue, again! July 4 is US Independence Day; July 4 is now also officially Evan Coleman Independence Day. We will be postponing surgery till ??? Evan, Lizy and Paul will be travelling to Dallas for the conference, and have a clinical consultation with Dr. Pappo, and the dermatology and surgical teams at Texas Children’s Cancer Center, on Monday July 14. Please do not stop praying for us, it is by and through those prayers that we are given the strength to journey on, to seek out the right people, to ask the right questions in our struggle for Evan’s life.
Now that we have convinced you that Evan’s parents are without any doubt ‘touched’ in the head, a brief note on the Leader of the LEGO world. As you may have noted, Evan has a love of LEGO. What you might not know is his love of computers, or rather his love of all the wires go together to make a computer work. The passion to connect everything has resulted in a discussion about whether or not it is right to sue your brother/son for trip and fall injuries because of the spider’s web of networking cables running between routers, computers, PS2 game systems, and anything else that has an RJ-11, RJ-12 or RJ-45 connection.
Dad gave permission that Evan could do what he wanted with the computer he built 4 years ago, and any of the left over components of his techno pack rat father. This did not sit well with Mom as she feared that her son might be a family oriented cyber terrorist wrecking both her internet avenue for email or worse still her computer might be destroyed under the meddling hands of her youngest child. The internal torment of her mind battling, between her love for the ‘Schnookums’ and her fear of a ‘Cyber Lex Luther’, was something to behold. A balance was struck by Dad, who thinking he was the new Solomon, declared all computers, not his own, to be off limits to the budding Bill Gates.
Dad is not Solomon, and Evan will get to do what he wants. All things fell apart, literally, when Dad’s laptop took a header of a ledge, and needed to be sent off for repair. He went to back up the contents to a previously synched exterior harddrive, and found it in 7 pieces in a box by Evan’s work area. Not a problem you say, you’re a bright lad, Dad, just put it back together. Dad would have, but it needed 8 parts. Ooops! Once again trying to play Solomon, Dad tells Evan, “You cannot network, assemble or disassemble any more computers or components until you’ve read this book and can pass a test.” The book – “A Guide to A+” A computer repair technician entry level text book.
Did we mention that Dad is not Solomon? Evan started reading, and loved it. He started speaking in three letter acronyms like a military analyst on CNN, and the ideas started to flow. The next Science Fair project will be a computer. A computer built by Evan. Dad seeking to slow the process down says – design it first. Mom and Dad spoke with doctors, and Evan drew. Dad works, and Evan draws. Evan is interested in if you would like to help with his grand scheme. If so please drop him an email to Evan@E-NevusNotes.com I am sure he would love to provide you with a list of his desires, something the editor of this blog is unwilling to do.
As we prepare to head West in the coming week, you remain in our prayers. Without you, the known and the unknown, who extend your heartfelt compassion and prayers to us, we would find every step leaden burden. NB we have enhanced the blog so that comments are now reviewed prior to being posted. If you would like to let us know something, but blog exposure is a concern, just include that concern, and we will not publish the comment. Or if it works better for you, Evan would love to hear from you personally at Evan@E-NevusNotes.com .

Many people ask what they might do for us as a family, we now have some answers:

1. A fund has been established to help offset medical and travel expenses. The account is called Evan’s Fund and donations can be made

ATTN: Tellers

Evan’s Fund

Crescent State Bank

1005 High House Rd.

Cary, NC 27513.

The branch managers, Eric Divine and Elizabeth Cantino, have been very helpful in setting this up. If you have questions, they can be reached at 919-460-7770

2. Evan, while unique, has much to offer both the Melanoma and Nevus Communities. An idea arose as to how we might help others by the experiences we gain and information we have, want to have, and need to research. Kendra Hartshorn (Our friend, and Paul’s Co-worker) has graciously offered to spearhead the efforts to establish the Melanoma-Giant Nevus Foundation. The current mission statement reads:

MGNF is dedicated to furtherance of support and research into causes and cures for Malignant Melanoma arising in the Pediatric Giant Congenital Nevus patient population. Malignant Melanoma is a rare pediatric solid tumor cancer that unfortunately has a growing population due to a variety of reasons. The incidence of Giant Congenital Nevi is even rarer; however, the incidence of Malignant Melanoma within the GCN population is unseemly rare given the prevalent presumption that the GCN is a pre-cancerous lesion. The goal of MGNF is to strike a balance of support between: research identification and funding; and assisting the patients and families with GCN and MM with the understanding that within this patient population are the potential genetic answers to both causes and cures for MM in the general population.

Your assistance with the second project would be invaluable, we are assembling a list of experts to tap into, and initial contacts have been positive. The need for volunteers to make a few phone calls or to assemble contact lists for others would be invaluable. The goal is to attain 501(c)(3) status within 27 months, and we have an accountant who has agreed to help in this although this is not his area of expertise. If you are interested in helping, no matter where you are in the world, please email Kendra@Melanoma-GiantNevus-Foundation.com

LIFE COMES AT YOU FAST

2008-06-26T20:20:00.000-07:00

It is a reality captured in the Nationwide Insurance advertising campaign. What is not captured so cleanly is that it is not life we fear or its speed, but the ultimate reality that death stalks the road we travel, seeking to nip us at the finish line like Jeff Gordon or Dale Earnhart Jr.

At our last entry things were going great. We had just returned from a family vacation and were excited to be getting back to a sense of normalcy. May 15 had Evan in for a 2nd PET/CT scan, and while we were concerned about a ‘warm’ area, it was not in the area that Mom & Dad saw as a slight thickening the size of a dime (~1.25 cm dia) under one of the skin grafts. We (parents & oncologist) determined to follow the course of wait and see. A month later saw the dime size had grown to nickel size (~1.75 cm dia.) The oncologist was called to arrange a consult with Dr. Marcus, the surgeon who had performed the wide margin excision. We saw Dr. Marcus on June 16, had surgery June 17, and today we learned the results of the biopsy/excision.

Spindle Cell Melanoma was back in the vicinity of the original mass that started the cascade of events detailed previously. We were also given the information that there was little doubt as to the certainty of the diagnosis as this mass was more uniform in cellular structure, and additionally that it had none of the genetic markers that would make it a good candidate for known positive outcome chemotherapies. Evan is too young by 8 months for the most promising therapy that it is understood to be so toxic that he would not survive the treatment, let alone the melanoma.

The medical consensus is a 2nd round of wide margin excision with a focus on wide margin of depth, especially the latisimus dorsi which had become infiltrated by this latest tumor; followed by some form of chemotherapy to be determined as information is gathered from pediatric cancer doctors from around the US.

While we know of the proposed course of action, this family is in need of two very important things: 1. Regardless of your faith, we need your thoughts and prayers that Evan may be healed, and that we might be strengthened for the fight to come; 2. Information, any and all information on Spindle Cell Melanoma presenting in Children with Nevi.

Thank you for your time and continued love, it means so much to each of us.

Easter Joy on the way to the land of The Mouse

2008-03-23T18:59:00.000-07:00

Dateline - Savannah Georgia, Easter Sunday, March 23, 2008
According to church calendars, you will have to wait over 220 years before you experience another Easter this early in the year as today. It might seem as long since there was a post to this blog.
When we last left the hero of our story, he was returning to school, anxious to reintegrate and in preparation for his first trip to Orlando and Disneyworld. At the same time on other fronts, parents and friends and onlookers eagerly awaited the arrival of news regarding the health of recently removed tissue form Evan.
As the dateline indicates, in a serendipitous/coincidental/Godcidental turn of events, this highest of high holy Christian holidays has seen us receive on biopsies and the beginning of the adventure of a lifetime (at least that’s what the marketing folks at Disney say).
With no further ado, while 3 pages in length covering in excess of 40 tissue samples, all results were deemed to be negative for melanoma of any type. That is not to say that all things are perfect or that all things are known. Rather, for the eyes, brains, and knowledge base of the greatest minds in this arena of medicine there will always be unanswered questions about what is going on in the tissue in Evan’s back. But currently we have stepped back from the precipice; and with that news, what better time for us all to take a vacation and celebrate a rebirth of life in our family. No better day of the year could have been chosen.
As a famous admiral once said “I have not yet begun the fight”, so the same could be said for Evan and his life journey. Up next, serial PET-CT scans, to confirm prior diagnosis and then we will fall back into a regular regimen of dermatology appointments and vigilant observation.
In the first posting to this blog in early December 2007, a five year timeline determines ones cancer survivorship status. With that in mind, Evan would like to invite you to the mother of all bashes, November 15, 2013, location, attire and theme to be announced at a later date. This may seem overly optimistic, but we have heard it said, it is very difficult to experience success if you do not plan for it.
All planning and forward thinking aside, many who we meet have been kind enough to comment on how well we have handled this as a family. Truth be told, we have not handled this very well at all, rather, we have entrusted the situation to our Lord; and the thoughts, prayers and well wishes of readers like you. Frankly, without the hope, prayers and gifts (time, food, a listening ear, and a supportive hug) we would have been a wreck. The words, “thank you” will never do justice to the gratitude we feel to all of you. This does not mean that the battle is over or that your payers would not be desired, instead, we would ask that you would now see this “race” as a marathon.
As commentators of this “race” we promise to do a better job of consistent and relevant postings, please forgive the delays with this post and chalk it up the editor’s unfounded superstitious desire not to tempt fate.
Coming soon – Pictures from the Orlando celebration.

Into the World, "What? A party for me?"

2008-02-23T16:39:00.000-08:00

Two weeks of healing, two weeks of learning patience, two weeks of giving thanks, two weeks of waiting. Since Evan dumped his walker he has progressed rapidly, perhaps too rapidly for his parents. The protective bandages have been removed and twice daily dressing changes have been exchanged for lotion rub downs and scar massage. To the average adult, the thought of lotion and massages conjures up images of spas and aroma therapy. Evan sees things in a different light. All his involved skin is hyper sensitive, and scar massage is not a comfortable process, besides he would rather play with his favorite birthday present (or anything else for that matter.
Segue; Evan celebrated his 9th birthday on February 16. He though his sister left for the weekend as his personal present, she actually was on a confirmation retreat. As parents we decided not to ruin the moment and share that she would be returning on Sunday. Each day is special and brings new joys, but birthdays are extra special, and so we had an Evan day. First there was the Lego at the foot of the bed, followed by a terrific breakfast care of Mommy, then we all (Granddad, Mommy, Daddy and Evan) went to see the Spiderwyck Chronicles. The day was complete with peanuts, steak and a Logan’s ‘Yee-Haw!’ The day was complete with an early bedtime before a busy and eventful week.
His favorite birthday present, a PSP from Matt and Angie has rarely left his side, and Evan loves to see if he can access the internet wherever he goes. He will do anything to get to http://www.lego.com/ . Monday was a full day out with Dad at work, Tuesday was the same. By Wednesday he was ready to stop dressing changes and have a try at going back to school. Half a day seemed just about right to start, and by Thursday he was back to full time (No PE/Gym or recess for a few more weeks). Thankfully Mrs. Hefner brought homework to Evan while he was off (Not so thankfully for him) that when he got back he did not have tons of stuff to make up.
Now we wait. We wait for results, we wait for bills, we wait for Disney World. It is unlikely that we will hear any results before March. The speed with which information was shared prior to full and consensus opinion could be established before means that we will patiently wait. Evan believes that he is going through this so that God can show the power of miracles in the world today. After all science has a hard time explaining so much of the circumstances around what happens in his body.
We have begun to receive the bills. These are not unexpected, although even the jaded parents with medical backgrounds have had a few face blanching moments upon envelope opening. Ah, the joys of an imperfect health system, caring parents, a sick child with a rare illness, and a political system where no one has the intestinal fortitude to meet the problem truly head on (but lest this blog take on a political tone, we digress) .
And then there’s Disney World. The confluence of Spring Break, a child’s requirement to visit the Magic Kingdom, and the replacement of hard wood floors has ‘forced’ us to retire to central Florida at the end of March. This will be our own Extreme Home Makeover vacation and we are all really looking forward to a little fresh-from-the-grove orange juice. Till we write again please keep each other in your prayers as we keep you in ours. Love Evan and Co.

Goodbye, my four legged metal friend!

2008-02-10T20:14:00.000-08:00

Thank you to all the people who prayed for me. I am feeling much better this week. I haven’t had to say fish whiskers or horse biscuits in the last 3 days. My dressing change on Friday seemed like a really big deal, and I was a little afraid. It only took 18 minutes, Wooo Whoo. Mom and Dad now change my dressings twice a day. Tonight they took a photograph of my back so that I could see. It was huge! I’m not ready to share pictures of that yet, so I had my Mom and Dad take some pictures so I could share my thanks for the awesome gifts that have helped me with not being bored.

Thank you Ethan.

My friend William and I are going ‘berserk”

Snoopy the exhausted pet (I’m pretty sure his tongue is purple from barking)

My teacher, Mrs. Hefner, came for a visit.

Morgan’s gone angry!

The special candy tower – Thanks Sarah!

Yeah!

Thank you for the books and videos sent to keep me from going crazy.

Some really cool stuff from Lockheed Martin/NASA from Kevin Roots, a friend of my Uncle Jon. He also sent me a cool link to the real Mars Mission website http://marsprogram.jpl.nasa.gov/missions/present/odyssey.html

Another of my Uncle Jon’s friends, Gene, sent me this link http://www.mitre.org/news/digest/advanced_researc h/ I’m smart, just not that smart, yet. But my dad said it had some really ‘fascinating’ research, but what does he know, he can’t even put together a simple Lego Vulture Droid.

Me and the full coverage get well card from my Cub Scout Pack. Go Pack 24, you Rock!

Today is Sunday, February 10, 2008, and today I kicked my walker to the curb. It was a tough 10 days, from bed, to chair, to walker, to crawl to walk. Now I just want to yell, “FREEDOM!”

A special thank you to Mike Furrey of the Detroit Lions; another of my Uncle Jon’s friends, he sent me a link to his website http://www.mikefurrey.com/ He and his wife set up a foundation to give back to the kids in need in Detroit and Columbus. It was cool to see a professional athlete giving back to his community.

From Mom and Dad – Thank you for all of your thoughts and prayers. We know and have known that we are being held up by and through your simple efforts. And while we know that the answers to our question lie in a different place, we are fortified by the knowledge that so many have shared their love with us and for us. We have felt it through the phone, a note card with a kind word, a meal, a shoulder to cry on, an ear bent to hear a simple plea. Each moment taken on its own is but a grain of sand; together we see a sandy beach at an ocean’s edge, and a blue sky overhead.

We now await the result of the pathology of tissue taken from Evan’s back, Scans and follow Ups have been scheduled; but so also we have scheduled vacations, and look forward to making our future plans while keeping a ‘weather eye’ on the horizon.

Mercy, peace and blessings to each of you who reads this blog, in many times the measure that you have shown us during this most challenging of times.

Fish Whiskers and Horse Biscuits

2008-02-04T20:40:00.000-08:00

Evan’s paternal grandmother, Nana, a very wise woman, has rules. Good rules, but rules none the less. One very important rule is: swearing is bad, using swear words is a sign of an uneducated mind. Not wishing to appear uneducated, but dealing with pain that demands the use of some expletives; Evan has stepped up the plate and delivered a home run. Enter Evan's words of the day "Fish Whiskers" and "Horse Biscuits".

Evan’s advice is simple. Fish Whiskers is said between closed lips while clenching teeth. It is used at times of great physical exertion while dealing with prolonged persistent pain. Horse Biscuits is delivered with one’s head leaning back and upwards towards the ceiling/sky, in a deep guttural yell. This technique is reserved for those sharp, sudden and unexpected pains typically experienced when someone steps on your foot, kicks you in the shin, or unexpectedly moves a skin graft donor site without warning.

The ability to fight through the pain using these simple techniques is highly recommended to all who might face physical challenge or pain.

Evan’s tips on a happy healthy recuperation will soon look at the benefits of Lego as an occupational therapy and constructive encouragement technique in the near future. For now, from Evan to you, good bye, good health and God bless.

Home Sweet Home!

2008-02-02T19:04:00.000-08:00

Today, after an unexpected 24 hour stay, Evan came home from the hospital. All said, the extra time was very good for him, he got great rest, made new friends, and knew that when it was time to go, he could "blow this popsicle stand" on his time.

The graft donor site on the back of his right thigh is very tender, and quite painful when he moves around. But the amount of drainage has slowed down considerably. The grafted sites, where tissue was taken out, are not nearly as uncomfortable.

When Evan got home he found a package waiting for him. Lego! The last elements of his complete Mars Mission theme arrived. With the help of a mini folding table, he sat up and assembled legos for a couple of hours before enjoying a tasty meal brought over by Ms. Danielle and Mr. Jeremy. (Thank you to all who have provided meals, transport, shelter and love) After this wonderful meal, he retired for the evening. It had been a long, tiring and at times painful day.

Morgan, Evan's sister, having spent the night at Mr. & Mrs. Woodards with her friend Ryan (Sp? apologies) was taken to her soccer game by her mom, an unanticpated event that was good for both of them. We will now all lay low and take things one day at a time.

As always, thank you for your thoughts, words and prayers, Evan feels lifted up and encouraged by all the wonderful words of support by both those he knows and those who he will get to know.

There is no place like home.

By Him, Through Him, For Him, Thank you.

Ow!! That hurts.

2008-02-01T17:35:00.000-08:00

Live from Room 5126 Duke University Hospital we bring you a post surgical report.

Surgery went well. the final procedure included wide margin excision of the initial primary site, an initial excision of a 'spot' of interest to th edermatologist, and the removal of a smaller mass that has seen some growth over the past 4 months.

It was the thrid site that presented the surgical challenge of the day, requiring the surgeon to conduct a serial excision of the bottom side, until he thought he was in 'clean' tissue. As he has operated on many patients with nevi, and as he was familiar with the initial findings, his thoughts were that he did not want to come back and have to do a re-excision of this spot in 60 days time.

The size of this third excision coupled with teh wide margin excision of the primary site meant that for a good wound closure, it would require a skin graft. This skin graft was taken from the back of his right thigh and measured ~4 inches x ~9 inches.

Given the length and extent of the surgery, Evan was given plenty of anesthetic and plenty of time to recover later. As he came out of the anesthesia fog he became aware of increased discomfort from the graft site and later the extent of donor site oozing. One intern, and a dressing change later destined us to a night at the Hotel Duke UMC.

Thank you for all your prayers, and we look forward to updating the information later.

FEAR!

2008-01-31T20:56:00.000-08:00

“All we have to fear; is fear itself” – Franklin Delano Roosevelt- Fireside chat – midst of the Great Depression

“Ye, though I walk to the valley of the shadow of death, I shall fear no evil” – Psalm 23:4

What is fear? We all have felt it. It is the deep sinking knot in the pit of your stomach. It is the cold clammy creeping sensation of unanticipated unsought solitude. For each person it’s different. Perhaps it is the sense of terrifying height atop a cliff wall, or the sense of unscalable depth at the bottom of a bottomless hole. Stephen King the master of many a fearful mental image has written that it is his ability to write down his deepest fears that has brought him freedom from fear; so here are some fears that have floated unspoken through the hallways of our home these past few weeks.

For Evan it has been the fear that he would die; fear that a second unanticipated procedure would either end his life prematurely, or that the cancer might overwhelm his entire body during the time he was asleep for the operation. It has been the fear of IVs, of pain and discomfort, the fear of not being able to grow up and fulfill the dreams of an eight year old. It has been the fear, that if he shows his fear he will cause his parents additional anguish. It is an unspoken thought that he may have committed some unknown transgression that he is being punished. All of his fear has no foundation, all this fear has no rational basis, all this fear that has been borne as a weight of self determined isolation. It is profoundly sad, and heart breaking, to observe a normally vibrant and effervescent child pass through this valley. But he has hope.

For Evan’s sister it is her potential loss. It is the depth of despair brought on by a lack of knowledge, the awareness of whispered conversations. It is held in a heart filled with compassion that cannot find the right avenue of expression. It is held in the desire to generate attention seeking events so as to draw the family to activities and spectacle that will move the focus from death and illness toward light and life.

For Evan’s grandfather fear is held in the knowledge of 83 years experience. That life is not fair. That people die. That children can and do suffer. That the power found in and through prayer, while profoundly strong, can leave us with the hollowness of our minds and bodies ravaged in this world.

For Evan’s parents it has been a gamut of thoughts and a gauntlet run from moment to moment since a diagnosis was confirmed, then a scan returned negative, followed by a recommendation for surgery that seemed to be unnecessary. The core of Evan’s parent’s fear leans toward post-surgical issues. What will be the extent of physical limitations? How much muscle will be taken? What will be the long term physical challenges?

The fears of the parents are remarkably different than those of the other members of the family. Fear affects each person individually, running rampant in isolation, stamped out within a unified community. While the cancer is real, this operation is not so much life and death, but rather a tool of confirmation – “we got it all and this is to ensure that fact” The doctors are great and the staff is better.

Fear, like sin, does not operate in the light, it prefers darkness and solitude to really function well. Today we met three beacons of light at Evan’s pre-op clinic visit at the Duke Children’s Center. First we met Ms. Bridgette, a nurse practitioner. She is the anesthesia team liaison. This past year she was part of a mission trip to Sierra Leone, and has a wonderful sense of humor. She had us quickly laughing as she asked questions and shared all the details surrounding anesthesia for surgery. Ms. Bridgette then introduced us to Ms. Darcy.

Ms. Darcy is a tour guide for children heading toward surgery. Ms. Darcy spent over an hour giving Evan a tour of the Surgical Suite; she took us from arrival to waiting room, from waiting room to pre-op, then from pre-op to surgical prep, from prep to operating room, and from operating room to recovery. After the tour she took us back to her office and took Evan step by step through his entire procedure spending extra time on exactly how an IV is started (Evan’s most focused fear).

After we finished our visit Ms. Darcy, we met Ms. Laurie, a social worker connected with the pediatric oncology team at Duke. She had heard a lot about Evan from Dr. Greiner and wanted to make herself available to us to answer any questions we might have. After 5 minutes with Evan, he had another friend who loved hearing about his happy memories from his trip to Kenya.

Evan’s day started out with an anxiety level of 7, and thanks to the light shed by his new friends, it ended at a level of 2. From his parent’s perspective, Evan went from quiet and pensive, back to a very relaxed and rambunctious 8 year old boy. All boy, all the time; just the way we like him.

We need to give a special thank you to all you who have kept Evan in your thoughts and prayers; to those of you who have called with a thoughtful word of understanding, or given experienced counsel. We have felt the real support of your prayers. While there are times when we have to walk this road alone, your support sheds light on our path, and your love encourages us to not despair but to live this life in abundance.

Evan would like you to read this psalm. He would like you to see how the words are so beautifully put together to capture peace, fear, strength and hope. Whether you ascribe to Evan’s understanding of origin of the psalm, it is the ability of the writer to convey the images in a way that transcends the bounds of organized religion. Truly children know God in their hearts better than any PhD can in their head.

The Lord Is My Shepherd
23:1 The Lord is my shepherd;
I shall not want.
2 He makes me lie down in green pastures.
He leads me beside still waters.
3 He restores my soul.
He leads me in paths of righteousness for his name's sake.
4 Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;y
our rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
6 Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord forever.

Answers and a Plan

2008-01-20T19:45:00.000-08:00

There were questions, there was a meeting, answers and information were given, and a plan of action was laid out.
In the meeting were: Lizy & Paul (Evan’s parents), Dr. Wechsler – Chief of Pediatric Oncology, Duke; Dr. Prose – Chief of Pediatric Dermatology, Duke; Dr. Marcus – Chief of Pediatric Plastic Surgery, Duke; Dr. Greiner – Pediatric Oncology Resident Fellow. As a friend commented the next day, there was enough brain power in that room to power the QE2 from London to LA.
The Questions with Answers in BOLD
What exactly are you proposing?
Team Proposal (TP): Wide margin excision of the area surrounding the original mass site to add a 2cm safety margin at the surface, and a depth of the underlying tissues beyond the depth of infiltration and scar tissue from the previous surgery.
When? 10, 30, 60, 90, 180 days
TP: Sooner rather than later (1/22/08 Dermatologist visit, 1/31/08 Pre-OP, 2/1/08 Surgery) PET/CT follow Up Scan ~5/1/08.
Where What exactly are you looking to excise? How deep? How wide? What structures?
Surgeon: ~21 cm length x ~4 cm height x Fascia level + Scar + some latisimus muscle
Why are you recommending this course of treatment at this time?
Oncologist: As a precaution to try to ensure that any cancer cell migration will be captured so as to attempt prevent a recurrence. As there is no expectation of a ‘clear margin’ except at the depth of the surgery, using the 2 cm protocol demonstrated to be successful in more prevalent melanomas seems most conservative and most preferable from a patient outcome.
With a negative scan, what is the motivation to excise further?
Oncologist: While the results of the 1/31/08 scan were extremely encouraging, this particular scan is only sensitive down to detecting tumors greater than 1 cm diameter.
What were your thoughts on the articles which were sent to Dr. Greiner?
Oncologist: Fascinating articles of cutting edge science; however, the clinical application of articles has not yet been formulated, and the methods of determining genetic information requires a special post surgical process, not the standard formalin/paraffin wax fixing.
Are you open to a genetic study of the tissue from block 7?
Dermatologist: Due to the restrictions noted above, no. However, since two of the authors of the article on GCN are friends, I’ll call them and see if they’re interested in tissue from this surgery.
Why are we having to ask for information?
TP: Because most parents do not want it, so this is new to us. That said, it is very encouraging to us that you are so active in your advocacy for Evan. Anything you want is there for the asking up to and including our raw data, Do you need a copy of the actual PET/CT scan?
Do we need a patient advocate?
No, They wouldn’t do nearly as good a job, please continue to ask all the questions you can think of, and please bring any further articles of interest forward.
Do you now consider the whole excised mass to be melanoma, even though the melanoma only showed up in one very specific location and only in very limited sections?
Yes, as a precaution, we must consider that as there were no ‘normal’ sections, that the entire mass must be considered to be melanoma, and it is that information that we base the recommendation of wide margin excision.
Evan will be picking up a video camera and putting together a short movie in the near future for this site. A note of thanks that your continued prayers and notes of support are greatly appreciated.

Surgery, Part II?

2008-01-17T20:24:00.000-08:00

It’s seems such a short time since we updated the blog. Time has seemingly stopped. New Years Day was truly a new beginning, amazing, joyous; yet we waited for the other shoe to drop. Such awesome news could not be left untarnished. From the first news in November we knew that this would be a long road. And then it happened, January 3, late afternoon. A simple phone call with big trouble attached. All phone calls from doctors are distilled in an instant, the essence and nature is encapsulated. Inside that capsule is all the information that an hour office visit could not cover. On January 3, Evan’s Oncology team shared its next step in his course of treatment – additional wide margin excision of the original site, a surgical consultation had been set up for January 17, 2008.
The team representative was open to forwarding our request for divulging the information and discourse that led to the team’s recommendation. He was also interested in finding out what we had uncovered in our own research. Since that time we received the pathology report from NYU and the team organized a meeting for January 18, 2008.

Having done much academic research into spindle cell melanoma we can tell you a number of important points. 1. Medical Article research is not for those weak of mind, heart, spirit and sight. 2. The typical age range is 65+ 3. The treatments in order of preference are wide margin excision with sentinel lobe biopsy concurrently, followed by radiation therapy and finally chemo-therapy. 4. Pediatric patients in the 10-20 age range have been treated very effectively with high dose interferon (Chemo) secondary to initial wide margin excision. 5. Cancer is a cellular level problem that is derivative from genetic restructuring 6. There are no protocols for a patient Evan’s age with Evan’s condition 7. Radiation is not an option for Evan as it would likely trigger additional genetic abnormalities in the nevus tissue surrounding the ‘site’ 8. Chemo is not an option for Evan due to the likely negative outcome (inability to survive the treatment) 9. Protocols are developed to guide the best outcome for the patient. 10. Each of Evan’s doctors ultimately wants Evan to both survive and thrive. 11. Cancers are insipid, deadly, and unpredictable and they continue to baffle medical professionals. 12. The worldly decisions on Evan’s care reside in our hearts and minds as we bring together our research and the advice of his medical team. The ultimate decisions lie in good hands far removed from this situation and yet as close as a comforting touch, a smile or a gentle word.
Two articles we located and forwarded to the team have to do with the genetic markers associated with melanoma in the one; and in the second, the presence of nodal growth in nevi which mimic melanoma down to the cellular level without behaving like metastatic melanoma.

The pathology report from NYU found 8 distinct and separate cellular morphologies in the tissue samples. Melanoma was found in only one section of one slide of one of the ten original tissue blocks, tissue block 7. The topography of the mass, cross referenced with the original pathology report indicate that block 7 was located through one of the nodular growths which was secondary to the trauma inflicted over Labor Day weekend. Most troubling was the detail that the melanomatic cells were located in the area of mass which had infiltrated the underlying skeletal muscle.
As we write this entry we are assembling a list of questions to be asked. The answers will be digested, ruminated and prayed over, then we will reach a decision on whether we will adopt the team recommendation or if we will seek a second opinion from another team. Our challenges going down this road are that time might allow any remaining cancer cells to reestablish themselves, that a second opinion will render the same course of action, that as the number of ‘knowledgeable’ doctors is so small that personal opinions about the perceived snub might jeopardize ultimate care.

The Questions

What exactly are you proposing?

When? 10, 30, 60, 90, 180 days

Where What exactly are you looking to excise? How deep? How wide? What structures?

Why are you recommending this course of treatment at this time?

With a negative scan, what is the motivation to excise further?

What were your thoughts on the articles which were sent to Dr. Greiner?

Are you open to a genetic study of the tissue from block 7?

Please provide copies of:
PET/CT Scan

Why are we having to ask for information?

Do we need a patient advocate?

Proposed course of treatment, monitoring and observation?

In patient, out patient, general anesthesia?

Now we will focus our attention on the hero of this little North Carolinian saga. Evan continues to gleefully enjoy his new found sense of confidence. In the last couple of weeks he hosted his first sleepover, his remarkable guest was Tucker. The sound of their laughter would cause a stern Greek statue to smile.
With the knowledge of the surgical consult he demonstrated his acute sense of perspective when he said, “So they want me give them total control and not let me make a decision about my body.” The knowledge of the appointment and its implications have somewhat colored the little man’s behavior, but “Buddy” (Nickname from the Hogg Family) has basically been himself, back to playing soccer, practicing trombone, and building Lego’s. It’s all built; from the xenophobic based Mars Mission series to the new instant classic Indiana Jones series.
School continues to be a source of intrigue and fascination without being overly challenging. In past years we have always sought to have his teachers challenge him, but with the events of the past 2 months, we think that someone has a much more important plan for him.
Evan entered the science fair last year with an entry in robotics, and got hooked on the competition. This year he wanted to compare LED lighting with regular bulbs. It has been a great project with Evan writing to a local LED manufacturing company, they sent him some great material. With the project built, the experiments run, the data collected and the display board built, Evan faced his first critique and hurdle in the preliminary review by Dr. Brock. She was tough, and left Evan reeling; but still standing. Evan thinks that she was tough to help prepare him for the next steps. We’ll see how he does and report back later.
Please pardon the tardiness in the timing of this post, as you might tell we have been distracted. We trust that you all will appreciate the latest pictures. Thank you for your love, comments and prayers.

HAPPY NEW YEAR!

2007-12-31T16:29:00.000-08:00

Thanks be to God! If ever there was going to be a positive end to this rollercoaster year it would have to be this way.
Today Evan had a 5 hour ordeal for getting the ‘urgent’ PET/CT scan after the conforming diagnosis of malignant melanoma. Following a failed IV start, the good Samaritan nurses from the slow pediatrics department came and got things going. FDG radioactive sugar was put in his blood stream, and radio-opaque dies were ingested. 45 minutes later, a 15 minute procedure is started, completed and we were sent home at 2:00 pm. We leave with little hope of any news before Thursday at the earliest.
However, Attending Radiologists stayed late, and one particular Pediatric Oncologist Resident stayed later. Scans were read, additional research was conducted, and phone calls were made.
At 7:00 pm, Dr. Griener called with this news: As of December 31, 2007 there were no readily observable metastatic lesions. As of December 31, 2007 there was no abnormal ‘FDG’ uptake even at the original excision site.
What happens next? God knows! But we will celebrate a new beginning this evening with the four elements most closely associated with this season: LOVE, PEACE, HOPE and this evening a greater sense of JOY.

Cancer Confirmed

2007-12-30T20:45:00.000-08:00

Plausible Deniability has been removed from the equation. It is now confirmed, 4 out of 4 doctors concur that part of the mass removed from Evan’s back was indeed malignant melanoma. From Sloan Kettering to MD Anderson, from Henry Ford to Duke we have a confirmed diagnosis. Perhaps we have all been given this brief window of time, from first utterance to confirmation, as a way of preparation, the calm before the proverbial storm. And a storm is truly brewing.
Doctors from across the country have been discussing what the next steps should be, and they have decided that a scan is in order; and the sooner the better. So this afternoon at 2:00 p.m. we were notified that Evan was to be receiving a PET/CT scan at Duke on Monday morning. History will be the judge of our preparations and priorities as parents and patient, but we’re very glad to have made the acquaintance of Dr. Griener and Dr. Wechsler of the Duke Pediatric Oncology Group prior to getting the call this afternoon. Evan is very excited that he will be getting this first scan. Not thrilled about the I.V., but glad to be moving the process forward.
The purpose of this scan is to determine if there are any ‘hot’ spots of unusually active blood flow. Given the recent surgery the original excision site is likely to be ‘hot’, which raises concerns given the treatment options. Any other ‘hot’ spot is cause for additional concern as it is a potential indicator of metastasis. We have been informed that the next course of action/observation is already a topic of discussions with widely varying opinions amongst the various doctors.
Medicine is an art which is practiced on patients. Most times the doctor is familiar with the malady and the treatments are well known and accepted, or the malady is subject only to known palliative or maintenance measures that ultimately define a quality of life. What then for the patient that defies access to the ‘known’? What then happens to the familiarity of choices? How does one develop an informed consent? When the internet and relationships render the patient as knowledgeable in the areas of diagnosis, observation and treatment, what is the role of the physician? Is it to strut the ego? Is it to tout the academic achievements? Is it to put the patient fully in the aura of the all powerful, all knowing, all caring ‘Doctor’?
In the information age, knowledge is power, in medicine it is the power to make an informed decision, to be an active participant in discussions, to have one’s opinions heard without having to have been subject to the sycophantic process of medical school, internship and residency. The withholding of information, the exclusion from the debate process, the last minute decision making and scheduling is not just wrong, it borders on . . .
Now that the parents have shared their personal angst, anger, grief and frustration; we’ll get back once again to the main protagonist of our book. When we last left him, Evan was eagerly awaiting his role in the Christmas pageant and the arrival of a heavy sleigh, a fat man in red, and LEGOs.
Evan was one of the wise men in our children’s rendition of the birth of Jesus as shared by Matthew. Mom co-directed, Dad ran sound and lights, Morgan narrated, and Evan did his king thing. Everyone had a great time, and they only stayed up till 11 after all the sugar of the post production nosh.
Christmas Eve is Morgan’s birthday, and she treated us all to “National Treasure: Book of Secrets” and she and Evan have memorized half the script in one sitting. Mr. Evan took the opportunity this year to try to stay up and see Santa, unfortunately for him, he fell asleep at around 11:20 p.m., only to wake up at 4:00 a.m. and realize he’d missed the Jolly Old Fellow. While staying up late might put him on the ‘naughty’ list for 2008, Santa obviously had Evan in the ‘nice’ list in 2007 because there it was: the LEGO to beat all LEGOs, the Mars Mission Eagle Base. While there are undoubtedly colonialist and xenophobic overtones to this newest LEGO theme, it is the pneumatic transfer tubes and Alien characters that really get the imagination juices flowing. Evan has managed to convince us that playing Astronauts vs. Aliens is a great family activity, and has had all four of us and Snoopy playing LEGOs on the bedroom floor. What a blast!
Will write again when we can, this was meant to alleviate some of the burden of sharing the details with others, and while it is likely to be cathartic, there is some doubt over whether this is healthy or beneficial to the cause.

Today's the day - for new friends, old friends and a new activity

2007-12-14T21:07:00.000-08:00

Today was a day for introductions. Today was a day for confirmation of the unique (or extremely rare, depending on semantics). Today was a continuation of the waiting game. Today we got a look at life in a community we don’t want to join; and began the process of acclimating ourselves to the potential of that possibility.
Today, we have added some new doctors to our team. Dr. Wechsler is the Chief of Pediatric Oncology at Duke; and Dr. Pappo is the Chair of the Children’s Oncology Group (COG) Committee on Rare Tumors. COG is the research arm for the National Institute of Health and the National Childhood Cancer Foundation. Dr. Pappo is located in Dallas, TX and was previously at St. Jude’s in Memphis. We have also reconnected with support through a group called Nevus Outreach, http://www.nevus.org/ and they have been very helpful.
Dr. Wechsler leans heavily on the side of a conservative approach to Evan’s situation which is a true God send for all concerned. As detailed below, Childhood melanoma is a rare condition and requires close management, childhood melanomas arising from GCMN are unique, and so the word went out through COG and the brightest minds in the field are formulating best monitoring modalities and treatment protocols. All monitoring will be based on the Hippocratic theory, ‘First, do no harm’ which renders many invasive procedures off limits. The ideal choice would be a PET/CT scan which would reveal obvious hot spots around the excision site due to increased blood flow during the healing process. It might also create a wild goose chase or an opening of Pandora’s Box. And so we continue to wait.
Being unique, a one of a kind, a collector’s object is very valuable in many circles. Under these circumstances it could be seen as problematic in a good light, downright exasperating in poor light. Evan’s condition is considered rare by those who do not like to deal in absolutes, but we have yet to find a doctor who can refer us to another similar patient. COG has a wonderful website http://www.curesearch.org/ that shares some wonderful information on cancer, its incidence, prevalence, treatment, outcomes and survival rates. 450 children <20 years will be diagnosed melanoma in the US this year. 60,000 adults will be diagnosed with melanoma. Even using the higher incidence of melanoma within the GCMN community, the number of children with GCMN and melanoma in Evan’s age group is approaching 1. This means that there are no current studies or trials related to him or his condition. All treatment options other than further excision or surgeries will fall into the experimental/off label/off trial. And the reality of many of the treatment options is that they will carry a heavy price up to and including . . . Waiting is a character builder, it develops patience and discipline . . . this sounds like lecture 45 from our childhood. What it does is bring frustration, anxiety, anger, and ultimately it brings humility and peace. This is not our PLAN, this is not our place to manage a situation, and we are parts of an earthly team. A team assembled to do battle on a microscopic level with cells that are intent interfering with the life dreams and goals of boy who is as unique as the condition he carries. This team has been gifted with the brightest minds in the respective fields: Dermatology, Surgery, Pathology and Oncology. And we thank God for its assembly. A team that we know is being held up in prayer around the world. We continue to carry a hope in the plausible deniability of Evan’s clinical presentation, a rambunctious handful of playful 8 year old that has carried the initial tumor on his back since birth. The second opinion on the original expert opinion has not been developed as this is written. We were told that it would be sometime this week that we would hear about the pathology report from Dr. Kamino at NYU. You might be surprised to hear us say that this delay is good news; but she has had the slides for a longer time, and has asked to do more slides with different stains. As she is the pathologist responsible for the maintenance of the only Nevus Registry in the US, her delay indicates a level of controversy moving in a different direction likely away from treatment towards observation which is our obvious hope. Should there be any developments we will post them here in short order.

While we waited for Dr. Wechsler we were exposed to the loving community of familes, children and care providers that gather each day at the Duke Pediatric Oncology clinic. We took heart in the close knit processes and openess, and we found it all too easy to take a step backward to move away from the environment. Please hold us close to your hearts as we each struggle with a reality we are not prepared to embrace. While we are at our weakest, please pray for our strength.
Now that we’ve covered all the personnel, medical issues and primary sources of parental angst we shall return to the hero of our story, Evan and his ongoing life of excitement. This week saw the rough draft of the Science Fair 2008 entry prepared, delivered and presented. The project is the comparison of Incandescent, Fluorescent and LED light sources. Evan is evaluating power sources, power usage, light generated and cost in an effort to confirm his hypothesis that LED’s as a light source is in the best interests of us all. He built a box, put in a couple of light fixtures and some LED’s, wired the AC side, soldered the DC connections, and did the math for the report that is the backbone of his theory. Next up a visit to a local company that is a worldwide leader in commercial LED usage. He would like to extend many thanks to the Heather at the Clayton Radio Shack, and the both Tom Powers (Jr. & Sr.) at Powers Signs in Danville VA for their help in procuring the supplies.
After this morning’s trip to Duke, Evan was dropped off at school, but his thoughts were on racing. At 5:00 we joined our friends from church, The Gustavsons at Rush Hour Karting in Garner. There we all raced fast karts on an indoor track until a small spin out in turn 7 resulted in first a yellow flag, and then a red flag. Bobby had top speed, followed closely by Corey and Alex. Evan had a blast until the yellow flag but that is for another story. All in all he is loving life and livin’ large. Every passing day is a day closer to Christmas, and while he holds this sacred time close to his heart, the gleam in his eye tells the world that this day might also be call National LEGO Day. And so until next time, we leave our hero, his LEDs, LEGOs and little Mars Men to: playing, sleeping and living the life of an active engaged 8 year old.

Hurry Up! and WAIT!

2007-12-07T20:24:00.000-08:00

We have all been told, “No news is Good news.” We beg to disagree, and research into situational ambiguity informs us that people would rather have bad news than no news at all; and so this week has been one of some frustration.
Slides and samples have been requested and sent to NYU where the only nevus registry in the US exists, slides and samples are also being forwarded to Henry Ford Health System, and requests for review and inclusion are also pending at Yale.
While the academic process has moved forward; a treatment/observation team assembly has been a little slower; however, we now have an appointment with the Head of Pediatric Oncology at Duke – Dr. Wechsler, who has co-authored a paper on pediatric melanoma and its treatment from a study at Univ. of Michigan. That study showed great promise. We see him next Friday, 12/14. At that time we should also have the results back from NYU – the second opinion of the second opinion.

Monday and Tuesday saw Evan take out all his Rokenbok and build a two level train track city; complete with sweepers, elevators and general machinery. We’ll try and get pictures, but getting into his room is akin to taking a walk in the jungle, your just not sure what you’re going to step on or into. He spends hours building, running, reengineering and rebuilding. It is a “task focused” intensity where he is able to shut out all distractions and find a real joy in the elements of making something new and each new rendition comes with a complete understanding of all the activities of the people within the imaginary world he has built.

Evan played his trombone in his world concert debut with the 4th grade band on Wednesday, and he/they sounded great. Thursday night he started working on his science fair project by building a display box for his experiments. This weekend we will all be going to Asheville to hear Nana sing with the Asheville Choral Society in their Winter Concert.
Evan would like to say thank you to all who are offering prayers on his behalf, and the notes of encouragement are greatly appreciated. Our challenge as facilitators of this blog is to share news and information without unnecessarily causing anxiety. This is done with Evan knowing the clinical diagnosis, but knowing he holds only a taste of the worldly preconceptions or fears regarding his diagnosis. Nor does he have either a statistical or analogous view of that information because he lives in a statistical group where n=1. So let us keep our minds and thoughts on the present for none of us knows what the future holds, truly God only knows. Evan on escarpment over Lake Nakuru, Kenya - June 2007 - Thank you Poppa!

A New Hope

2007-12-03T19:49:00.000-08:00

We surely do not wish to step on Mr. Lucas' feet, but the person at the heart of this column, Evan Coleman, is both the epitome of Hope and a fierce fan of the Star Wars franchise. This Blog is intended to share the current status, condition and well being of Evan as he makes public his ongoing battle with a lifelong challenge. He has been up until the last 2 weeks a very private person when it came to his medical challenges; but God has a way of speaking to us to share what is in our hearts when the the time is right. That time for Evan is now.

Evan was born February 16, 1999 and his most remarkable physical feature was not his length or weight, but a birth mark extending from the bottom of his neck to his buttocks and wrapping almost entirely around his torso. This birth mark had a name - Giant Congenital Melanocytic Nevus; and was distinguished by its variegated colors and textures.

Within 6 hours we had heard from 3 different doctors in 3 different specialties that we needed to see Dr. Tor Shwayder at a nearby teaching hospital, and thus Evan and we were plunged into the murky depths of uncharted waters with new knowledge that he was challenged by a very rare and potentially life threatening condition.

In the first six months of his life, Evan underwent a seris of biopsies and an MRI to help determine the extent, prevalence or existence of any immediately life threatening problems. Thankfully, there were none; however, there was always the underlying information & statistics. The entire nevus is a pre-cancerous lesion. There will always be a higher likelihood of melanoma. Melanoma may appear spontaneously. Sun exposure restrictions.

Life went on. Observations were made, standard questions were asked and answered. What we accept as normal would bring out the pained looks of shock from students and residents, along with some of the funniest quotes ever, "Has he always had this?", "Those look like flea bites, and I'm an exterminator." All unintentionally hurting, all said with the intense desire to help in a situation that they could not grasp.

We could bore you with the background details; but most clinical information is available on the web. In 2006 we moved from Michigan to North Carolina, and within a year and with the guidance and perseverance of Evan's Pediatric Dermatologist at Duke, Dr. Neil Prose, a plan was adopted to remove a bump on Evan's left flank. This bump had been with him since he was born, had undergone a punch biopsy in the first six months, and while it had grown slightly after biopsy, it merely mimicked the growth of the surrounding tissues as he grew.

2nd grade was the best two weeks of Evan's life. Third grade brought its own challenges as he had to change for gym in a locker room of older boys who were 'boys'. Evan dealt with this, and balanced the risks of surgery against the challenge of peer pressure, and with the help and support of his teachers became very adept at dealing with any issues that came up.

Dr. Prose pushed us toward the removal and eventually cajoled us all into taking the step of locating a pediatric plastic surgeon and scheduling a consultation. Then the unthinkable happened, on the Thursday night before Labor Day weekend, Evan fell awkwardly in our church and hit this portable computer mouse sized mass against a chair. Over the next 4 days we got the swelling under control and Evan was now begging to have his 'bump' taken off, and the sooner the better.

We met Dr. Hanna in early October, and by mid November surgery was sheduled and completed. The 'bump' had become a 'mass' and was now affectionately called a 'gross specimen' This was then reviewed by the hospital pathology lab, and when no definitive diagnostic determination could be made the specimens were sent to Harvard for a second opinion. And so it was that on November 28, 2007 a new clock started, the cancer survivor clock; a 5 year countdown timer as we heard the words we hoped we would never hear, malignant melanoma.

And this is where this blog is born, for Evan's immediate reaction the day after surgery when he looked at his back was "It's a dream come true" in the place of the 3" x 2" x 1.5" bump was a 5 1/2" incision where before there had been a protuberance. This was a happy and joyous day because Evan felt that he had been made whole because 'it' was gone. He immediately became okay with people knowing about his condition and okay that they pray for him, and could we tell the pastor about his surgery. With one operation his entire world had opened up for him.

At this time, Evan is doing great, truly better than ever. Medically we are in a wait and see mode of assembling a team, evaluating slides and tissue samples for better understanding. The clinical diagnosis as it stands is spindle cell malignant melanoma, with pathological measurements of 7.3 cm, 4 cm, and 1.9 cm, which places it either as a stage 2b or stage 3; however, there just is so little data on melanoma in children let alone information on melanoma within the context of a GCMN that few would be brave enough to render a prognosis.

Spiritually he is a child of God and has the strength of Angels and the renewed heart of a frisky 8 year old. We have notified and been notified that many hundreds of people and tens of churches have added Evan to their prayer lists. To all of those who hold Evan up in prayer, thank you, there is a warm comforting presence of the Spirit which has descended on our house and appropriately brought us Peace.

In the coming days, weeks and months ahead, we will do our best to keep this up to date and keep all who are interested informed. Part of the deal with Evan was that we would show him doing the things he loves, Legos, PS2, Rokenbok, and all things Star Wars.

Thank you for your interest, prayers, and ongoing caring support.