Confirmation - Frustration

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!

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

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

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

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:

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

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

Chemotherapy

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

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

• Other Options presented via National Institutes of Health (NIH)

Surgical Intervention

1. 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)
2. Removal of bulk of tumor in biopsy process to acquire live tissue for development of vaccine.(Done at vaccine developing facility – Bethesda. MD)

Motivations, Fears and Basis

Inaction may lead to metastasis and early death.

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

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

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

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

NEXT

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

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?

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.