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.

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.

We're Back!!!!

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

7 long days = Too much information

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