tag:blogger.com,1999:blog-17246469000231028012024-02-07T10:43:26.036-08:00E - Nevus NotesA journal of events surrounding the life and passing of Evan Coleman, a boy diagnosed with malignant melanoma in November 2007. He succumbed to the disease in August 2012.Unknownnoreply@blogger.comBlogger75125tag:blogger.com,1999:blog-1724646900023102801.post-16678922935267572732016-02-16T05:24:00.000-08:002016-02-16T05:24:31.679-08:00Happy BirthdayAnd Thanks for the Inspiration<br />
<br />
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">It’s raining outside. I can’t remember a recent February 16
or August 12 when it hasn’t which is fine because it reflects the mood inside
our home. Yesterday it snowed here in
North Carolina, or I should say the weather gave its NC rendition of solid white
precipitate. That is to say a ‘dusting’ for those North of the Mason-Dixon
line; but a reason to close all the schools, massive wrecks and shortages of
bread and milk here in the Triangle of NC.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So last night when I walked outside, the fog of
transitioning weather took me back 17 years to what had been a crisp, clean and
moments of anticipatory joy. The date was February 16, 1999 and not two weeks
prior our family of three was gathered in an ultrasound room looking at images
of the soon to be fourth member of Team Coleman. </span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">There we three stared at grainy gray scale images of head,
belly, arms and legs wriggling in a sea of love only a mother can provide. As the technician pointed things out there
were increasing levels of joy, wonder and love – there were ten fingers and ten
toes, an appropriately developed brain, a heart with four working chambers. Our little boy was going to be born perfect
and without complication. Well we were
right on one hand and so wrong on the other.
</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Evan MacGilvary Jenkins Coleman joined our family at around
9:00 am on a cold, crisp and clear blue morning via emergency C-section because
he got caught in the jump rope of his umbilical cord and wrapped it around his
neck twice. Over the last 24 hours this moment in time has been represented by
the cold unrelenting sleet and ice that signaled the impending treachery and
trouble that life can throw our way.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The Giant Congenital Melanocytic Nevus that was a birthmark
of biblical proportions cover his back from his neck to the cleft of his
glutes, and wrapped around both sides of his body to almost meet and join over
his belly button. The colors and textures
were a physical representation of every known natural color of skin possible in
the human race. </span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">He was wearing his very own coat of many colors like Joseph
of early biblical fame. As we each saw this beautiful baby boy and his birthmark
we were thrown into a deep and dark fog with our only beacons being ‘experts’.
What had been a moment of anticipatory joy had turned cold, cruel and painful
as hospital staff, doctors and nurses approached us with carrying degrees of
pity, sadness, remorse, fear and the glassy eyes of the unknown. Last night as the fog settled in and the only
light was cast by sodium vapor lamps glistening in a fog so thick you could
barely make out the edges of the road; it was this pea soup that threw me back
seventeen years to the beginning of a personal fog.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Over the next thirteen and a half years the fog ebbed and
flowed as we experienced all the events and emotions of building and being a
family. There were house moves and vacation
trips of lifetimes. There were school plays and favorite teachers, and then
after eight of those years were done; the fog was met with the darkness of
night as the shadow of the word melanoma hung heavy over our heads and lives.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Until the rain of this morning brought back the events three
and a half years ago as a sadness enveloped our lives like a cold North Carolina
rain, Evan died. No matter how hard we
had tried to get over, through or around the fog we saw no light or way out. The empty space in our hearts has not been
filled, the edges are a little less sharp, almost softened by time, but the
dark black hole of dread and despair looms waiting for these days of remembrance.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This year in a testament to the power of ideas and legacy I
will graduate school as a Physician Assistant capable of taking histories,
performing physical exams, developing differential lists of diagnosis, ordering
and assessing labs; and ultimately prescribing and following patients and their
plans. This is legacy of inspiration and
fulfillment of a promise made to Evan as he lay dying in our bed. That I would help
as many people as I could with the breath left in my body.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The rain pours outside both literally and figuratively for
the pain and sadness of loss are real I can see a glimmer of light in the future,
the memories will not stop coming, but the future is a brighter place. I know
that my research efforts, inspired by Evan’s perseverance through the fog, are
making a difference both in the labs of the world, in the clinical lives of
patients and in the power of the sun rolling back the fog that envelopes the
lives of many families.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Today our little family of three will gather again, not in
an ultrasound office but a restaurant; and we will look into a grainy gray
scale image of the future and we will not see perfection, we will not get
sucked in by a false hope. We will
instead see the joy in opportunities and hard work to be shared in building a
life in this world.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Today is yet another celebration of love, life and joy. It is a day of remembering great times and
amazing people, and it is an opportunity to be inspired to do something great,
like climbing Kilimanjaro and taking a T-Shirt to show the world your inspiration
to do and to act was a sick little boy in a wheelchair who denied death the
victory of destroying any dream while he still had breath to give.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRrCR-wyyg6KRv8MBs9T5zFGmbyjur_5PAB-D1Kq_YiU4PCOajaceQPf-t34eFslh87NJqoJa5UvHulazMtXvpJ9rnthN6SaJ49S3DpSrSSHak8EnlO5HVaydq_-Ol4T-hrS4ryrTukjo/s1600/Danny+Stirland.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRrCR-wyyg6KRv8MBs9T5zFGmbyjur_5PAB-D1Kq_YiU4PCOajaceQPf-t34eFslh87NJqoJa5UvHulazMtXvpJ9rnthN6SaJ49S3DpSrSSHak8EnlO5HVaydq_-Ol4T-hrS4ryrTukjo/s320/Danny+Stirland.jpg" width="320" /></a></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="mso-no-proof: yes;"></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">On the eve of Evan’s death in 2012, he demanded to stay with
me as much as possible and to participate in living with winners. He saw the college and the team that I coached
as winners and they saw his courage as inspirational. On his last day at
practice the team took a photo, had it put on T-Shirts and wore them as a
tribute to Evan after he had died. After
they had showed up to his funeral in the most respectful gesture, and wore
black armbands for the season, and even worked in the Evan’s Garden, I hope
they will forgive me in thinking that would be the last they would think of
Evan.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">In January of this year I received this photo via Facebook.
A true Yorkshire lad, our Danny Stirland, had climbed Mount Kilimanjaro in support
of a Hospice House in the UK. I cannot
think of a greater honor or lasting impression and inspiration than that of
Evan on Danny. If you look closely at this
picture of triumph, the T-Shirt Danny is wearing is the one honoring Evan on a
soccer field in North Carolina.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXDsURYdZq1_e-juVNmCp2TZoQcyGIkPYqbbUMWhEhnlTd5QeiQlxCZ3L_MZw41t9Dz5AfQO8IZZ80HbsFRkpfijwLRQ3yHMAeswqbCb6pOPJuFOdhndh8JKGIfBoNQmGzRCS1AW1dpBQ/s1600/Evan+at+MOC.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="191" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXDsURYdZq1_e-juVNmCp2TZoQcyGIkPYqbbUMWhEhnlTd5QeiQlxCZ3L_MZw41t9Dz5AfQO8IZZ80HbsFRkpfijwLRQ3yHMAeswqbCb6pOPJuFOdhndh8JKGIfBoNQmGzRCS1AW1dpBQ/s320/Evan+at+MOC.jpg" width="320" /></a></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="mso-no-proof: yes;"></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Do not yield to the cold. Do not get lost in the fog. Do not
get drowned in the rain. Feel the light.
Be inspired by the light. Be the light.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">As I finish the note, the sun is trying to break through,
the birds are singing their morning songs and my heart is a little lighter as I
say – Happy Birthday Evan!</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-43024572107713908702016-02-07T15:28:00.000-08:002016-02-07T15:28:18.360-08:00The First Rule of Life
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">24 hours ago I had just finished tying my neck tie in
preparation to go to a funeral. My need
to be distracted from the tragedy of a life cut too short lead me to FB where I
read, “</span><span lang="EN" style="color: #141823; mso-ansi-language: EN;"><a href="https://www.facebook.com/paul.coleman.568?hc_location=ufi" target="_blank"><span style="color: #3b5998; text-decoration: none; text-underline: none;"><span style="font-family: Calibri;">Paul</span></span></a><span style="font-family: Calibri;">
just curious where are you getting your patient reported information? When you
talk about rates are you talking about ones that are symptomatic or non-symptomatic
or a combination of both?</span></span><span style="font-family: Calibri;">” </span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Both
questions need to be answered and I hope I will be able to accomplish that with
this blog post. But before I wrote this
I had two very important tasks to accomplish. First, I had to attend the
funeral and share some thoughts with the family who are upside down with grief;
and second, I had to take Lizy out for an evening of fun and laughter with dear
friends of ours who knew and loved Evan and mourned his death with us before
they had children of their own. </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">The
ironic nature of death is its inevitability once life has begun. As I sat in the church yesterday thinking
about what I might say, I was drawn back to the questions on FB. By what right
do I speak? By what right do I profess knowledge? And by whose authority do I
act? These questions have haunted me for 17 years. I ask those questions of myself every day, I
asked them at every opportunity of all the medical providers who ever attended
to Evan. But yesterday I just sat and contemplated, knowing that the wrong
words or a mishandled delivery would not provide strength, help, or healing.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">The
woman who had passed away just a week ago was not well known to me. Gathering from the attendance at her memorial
service, it seemed that she must have been a very quiet and unassuming
person. 25 of her coworkers showed up to
share their loss, and perhaps another 40 or so family and friends. But the 4 men and 3 women who sat in the
front row knew her best and she had invested time, and love and caring into
each of their lives so that each of them (A Husband, two sons, a
daughter-in-law and 3 grandchildren) is now a living legacy of who she was in
life.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Why
was I there? Why did I feel the need to speak and share? Because when we were
at our lowest points in the summer of 2012, when we were trying to deny death
its victory, when we were planting a garden and trying to sing our way to joy –
She helped us. I think that if she could
have done her work at the Miracle 2012 (the concert to help defray medical
expenses and raise awareness) without any recognition she would have done so; I
did not even know that she had been there to help. This is what I knew, every time she saw
either Lizy or I she would ask how we were doing. She was the embodiment of quiet compassion
without fanfare or the need for recognition. She cared.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">6
months ago she had been diagnosed with pancreatic cancer, and a week ago she
had died. I attended her memorial service because she cared, and I spoke to her
family of her selfless care for me and my family. And I shared with all the
people in attendance that for all the good that someone invests in us we are
obligated to share their love with others, so that we might be ambassadors for
good, carriers of compassion, and living legacies of life. </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Three
and a half years ago, a woman I barely knew offered her time and help to a
chaotic hodgepodge weekend driven by hope but grounded in the reality of a devastating
reality – a life was being ended too soon.
For as much as we know that life must end, we want to end on our terms,
and it should never happen to a child.
As a race of creatures it may be evolutionary selection that older
creatures will do whatever it takes to keep the young alive, but that view does
not account for free will, self-interest or most importantly love.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Her
loving sacrifice, along with the sacrifices of so many others, allowed me the
opportunity to grieve on my terms, on my time frame, and to rehabilitate at my
own pace. Part of that process was
determining how I live out the death-bed promise I had made to Evan – That I
would do as much as I could with the time left in my life to help as many
people as I could.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">That
lead me to Physicians Assistant school which would afford me the chance to
become a medical provider faster than any other route. As it happened the school I am enrolled at
was undergoing some changes and a professor offered a possibility of doing an
independent research project. This would be on top of the 22 graduate credit
hours/semester for 4 straight semesters of the first year, and in addition to
the 12 months of clinical study required to graduate. </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">I
met with the professor and was discouraged from moving forward, but I did
anyway; and then I met with the professor and their boss and was again
discouraged from moving forward, “It’ll be too much to handle”, so I applied
for IRB (Institutional Review Board) approval anyway. Along the way I was in contact with Nevus Outreach
about the Registry of Nevus owners, and was told by some that it was “messy”
and “there may be nothing to work with.” </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">12
months ago my research proposal received IRB approval 3 months after
submission, and soon after a data file arrived from Nevus Outreach. 4 months of
work later I had my first breakthrough, only to be shot down for conducting ‘dirty’
science – I proved a negative; the medical assertions that LCMN has a higher risk
for melanoma was wrong, but I couldn’t prove what was happening.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">I have been told by a wise soul that
I must break the narrative for a moment to explain the term ‘dirty’ science. ‘Dirty’ science is good science – a question
is formed, then it is tested against data, and conclusions are reached. It is
termed ‘dirty’ by academics because it causes all the related ‘knowns’ and ‘givens’
to be questioned leaving the area of research a little muddier than before. </span></span></i></div>
<br />
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">‘Clean’ science clarifies a subject
by proving a positive assertion. The impertinence of a student to assert a new
positive with no supporting laboratory findings would be seen as fraudulent at
worst and looked on with disdain and derision at best. It was essential for credibility that I
initially assert the ‘given’ even if I didn’t believe the established medical
understanding otherwise my work wouldn’t be given credibility. All I wanted to do was throw the medical
understanding of the past 40 years into question long enough that someone would
look and find something in the lab that would be the basis for ‘clean’ science.</span></span></i></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">As
a result, I lost my advisor and was floating on a sea of pain and failure until
someone threw me a paddle of self-belief and I worked my way to shore. 5 months
later I had a finished paper based on a reworked scientific question and
submitted my work for publication and peer review.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Two
weeks ago I found out that my paper had been accepted for presentation and
publication, and since then I have been invited to present my findings at the Graduate
Symposium of my school, and possibly to share them in other locations as my
academic schedule permits. I hope to be
able to present at the Nevus Outreach Conference on my findings, but also to
speak to validating the data in the Registry and how parents might contribute
in many ways to the research efforts that I hope will lead to interventions and
cures that will ensure that no more children die from any sequelae of being a
nevus owner.</span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Rather
than posting the entire 30-page paper here, I am posting the Abstract. Medical legends and lore not based firmly in
reproducible evidenced based science must be challenged and brought into
question otherwise no one will seek out the truth. In the instance of a cure for NCM we have
been looking for a needle in a haystack; this paper is part of a larger collaborative
effort lead by others that has cut the haystack in half, and allowed a more focused
search by using a magnet instead of tweezers. But none of my work has been possible
without the work of the giants whose shoulders I stand on, nor the caring
selfless compassion of a lady who passed away 8 days ago. I am but a conduit
who seeks to share a little light in the darkness.</span></span></div>
<br />
<div align="center" style="margin: 0in 0in 8pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN" style="color: #141823; mso-ansi-language: EN;"><span style="font-family: Calibri;">Study of 1,160
Large Congenital Melanocytic Nevus Patients Shows No Connection to Primary
Cutaneous Melanoma</span></span></b></div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Abstract</span></b></div>
<br />
<div style="line-height: normal; margin: 0in 0in 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">Introduction</span></b></div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt; text-indent: 40.5pt;">
A
retrospective study on an internet based registry of patients with Large
Congenital Melanocytic Nevi (LCMN) was conducted to explore possible
misconceptions regarding morbidity and mortality.<span style="mso-spacerun: yes;"> </span>Prior studies based on the Nevus Outreach,
Inc., Registry (NOIR) utilized a relatively small sample size (n = 379) and may
have failed to uncover significant disease processes.<span style="mso-spacerun: yes;"> </span>The addition of >750 subjects to NOIR in
the subsequent decade offers the possibility of greater insight into the
underlying epidemiology of LCMN.</div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt; text-indent: 40.5pt;">
Consistent
with prevailing medical opinion of the past four decades, it is hypothesized
that LCMN correlates to a higher risk of morbidity and mortality via primary
cutaneous malignant melanoma (PCM). </div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt; text-indent: 40.5pt;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0in 0in 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">Methods</span></b></div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt; text-indent: 40.5pt;">
To
challenge this hypothesis, non-parametric models, descriptive statistics and
National Cancer Institute’s database—Surveillance, Epidemiology, and End
Results (SEER)—were utilized. Following IRB approval from Methodist University,
NOIR data was acquired and curated according to National Institute of Health
(NIH) guidelines for rare disease registries.</div>
<br />
<div style="line-height: normal; margin: 0in 0in 8pt;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0in 0in 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">Results</span></b></div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt; text-indent: 40.5pt;">
Analysis of
NOIR was first conducted in comparison with prior studies.<span style="mso-spacerun: yes;"> </span>From this review it was determined that
sample size from various geographic areas within the data were insufficient to
identify a geographic bias. It was additionally concluded that previous sample
size was insufficient to draw conclusions based on a single verified finding.
Previous conclusions of significance of phenotype correlating to a specific
comorbidity remain valid. Other conclusions regarding gender, LCMN size and
LCMN location, whether implicit or subsequently inferred based on correlation
to a single variable, lack statistical validity. </div>
<br />
<div style="line-height: normal; margin: 0in 0in 8pt;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0in 0in 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">Conclusion</span></b></div>
<br />
<div style="line-height: normal; margin: 0in 0in 0pt; text-indent: 40.5pt;">
Researchers
have struggled with correlating case study evidence and anecdotes of
LCMN-linked melanoma to the reported patterns of morbidity and mortality within
NOIR. The present study concluded that the additional data revealed a reported
epidemiology of melanoma prevalence over a lifetime similar to SEER for the
general population. Moreover, when prevalence of NOIR melanoma by age group was
assessed for consistency with a diagnosis of primary cutaneous melanoma (PCM)
in SEER, the diagnosis of PCM in the NOIR subjects was found to be overstated.
The hypothesis that LCMN correlates to a higher risk of PCM was found to be
false to a high degree of significance (p < 0.01), in that previously
described cases of primary cutaneous melanoma arising within congenital
melanocytic nevi are not melanoma.</div>
<br />
<div style="margin: 0in 0in 8pt;">
<br /></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-47576920926878970082015-11-14T19:36:00.000-08:002015-11-14T19:36:59.243-08:00Nous sommes tous les parisiens
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;"><img alt="151114-paris-peace-sign" src="http://www.slate.com/content/dam/slate/blogs/the_slatest/2015/11/14/151114-paris-peace-sign.jpg.CROP.promovar-mediumlarge.jpg" src_tag_name="src" title="151114-paris-peace-sign" /></span></div>
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">To say that I
begin this message with a heavy heart does not fully capture the moment.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">It could be said that I always write with a
heavy heart or with a sense of being oppressed by emotional, spiritual and
intellectual burdens not of my own making.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;">
</span></span><span style="font-family: calibri;">Yesterday marked a new low in the story of humanity.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">And yet it also marked a new high.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">Yesterday a group of organized terrorists
executed a series of attacks in Paris that left many people dead, more people
asking serious questions, and the remainder of us with a little more to worry
about.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">And yesterday some child was born
who will lead a nation, and another who will discover a cure to a previously
incurable disease, and someone else began a career in healing with their first
patient contact. And somewhere in the world yesterday a child was born with a
Large Congenital Melanocytic Nevus (LCMN), and that child’s parents are just
like you and I.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">These parents
(maybe for the first time, maybe for the third fourth or fifth time) suddenly
find themselves in a strange new world. Who is this child? What is a Nevus?
Will it kill them? Can they grow up to be normal productive members of the
community? Will they be allowed to grow up and become normal productive members
of the community? Do you remember those feelings of inadequacy? The fear of
failure, death and the piercing gaze of strangers?</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">There is a word for these emotions and
initial understanding—Isolation.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">It is
the goal of all terrorists—to detach individuals from a group making them more
vulnerable or to impress societal mandates upon a group creating individual
panic and defensiveness.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">The Societal and
Political implications are irrelevant, frivolous and superficial.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">All power is found in the love for one
another and in the strength of relationships which are often forged in the
crucible of common challenge or even suffering. All I have to do to see the
truth in this statement is to observe the two strong factions within the Nevus
community: those for and against nevus removal.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;">
</span></span><span style="font-family: calibri;">At extreme ends of the spectrum on this issue are people who are
convinced beyond a shadow of a doubt that their position is right, unassailable
and should be impressed upon the community of nevus owners.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">That decision is a profoundly personal
decision and can never be taken lightly given the very real risks of surgery
and the unknown risks of a fatal outcome if not removed.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">But all of that
discussion is of no benefit, no comfort nor of any help to those families
either facing a terminal diagnosis for their child or are seeking to learn to
live again after they have lost a child to a disease associated with LCMN.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">We engage in a vibrant community of support
and encouragement and for the most part we have learned to live together in the
light of LCMN without pointing out the perceived failures of decisions we did
not make nor have to live with.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">What I
mean to say is that Nevus Outreach (NOI) has afforded us a forum to share, live
and love as a community and rescued us from the terror of isolation.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">I would like to
offer an assessment of accomplishments of Nevus Outreach in comparison to the
timeline of the disease process we all most fear for our children:
Melanoma.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">Melanoma has been found in Peruvian
mummies dated ~2,500 years ago. Melanoma as a cancer was not described until 1787
and not identified as metastatic until 1968, almost 50 years ago.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">In comparison, LCMN were first described in
1777. A melanoma in an LCMN was written up in 1964 while Nevus Outreach wasn’t
even founded until 1997 less than 20 years ago. </span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">In less than 20
years NOI has founded, fostered, nurtured, cajoled and refereed us into a loose
confederation of the people whose true strength is in our ability to truly
uplift each other as we face both the disease and societies that may not
understand, or may even be cruel or vindictive.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;">
</span></span><span style="font-family: calibri;">Let me share a story to illustrate.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">When Evan, my
nevus owning son, through a tantrum in a restaurant while we were travelling on
vacation I picked him up and took him outside to cool off. He was about three
years old and the threat of removal from the family at mealtimes got his
attention every time.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">I stood at the
entrance looking out over a beautiful valley of trees and fields as the sun
began to set.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">In truth as I look back I
may have taken Evan outside just to appreciate the beauty of the moment. Just
as I am about to head back inside we were approached by a man who engaged us in
conversation. He started by saying that he had noticed Evan getting upset and
wanted to offer his assistance.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">He
stated that he was a local exterminator and that the flea bites on Evan’s legs
were what was mostly likely causing his difficult behavior.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">I was then left to
cool myself, explain as graciously what an LCMN was, and get Evan back in the
restaurant before he figured out the total lack of civility in such a brazen
assumption.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">That of course was beside
the inner monologue that, “It doesn’t take fleas to get my child worked up, I
am quite capable of that all by myself.” </span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">As soon as we got
home I shared the experience via the Yahoo message board, the forum started by
NOI.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">The laughs, comfort and
encouragement I received were priceless.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;">
</span></span><span style="font-family: calibri;">I have seen similar stories played out on Facebook, and it warms my
heart that such an outlet for angst has been afforded while being a true source
of encouragement.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">Most of our
energies are expended in raising our children as best we can, but unfortunately
some of us have had to tread a different path.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;">
</span></span><span style="font-family: calibri;">This alternate path is one of disease, hospitals, treatments and
ultimately death.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">I stood up in a
general forum at a NOI convention in 2008 and stated, “My family is the one you
don’t want to be, our some has been diagnosed with melanoma.”</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">It is no easier to write today than it was to
say in 2008 or to hear it or the first time in 2007.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">But NOI afforded us opportunities just as
they have to you.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">This confederacy
of parents and nevus owners has forged paths toward research goals, built
awareness and provided both first contact support and ongoing support when
children have developed either Neurocutaneous Melanosis (NCM) or Melanoma.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">A number of initiatives have generated
results but may not have received the adulation or awareness as progress in
research is often slow and the details tedious and overwhelming.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">NOI has helped
establish a global network of scientists and doctors with high levels of
interest in LCMN.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">And from my personal
perspective they initiated and maintain a registry of nevus owners which became
the source of material and data for an academic paper I wrote as part of my
course work as I pursue my Masters in Medical Science to become a Physician’s
Assistant.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">This is the path I have taken
in response to a promise I made my son Evan as he lay in his deathbed at age
13, “That I would help as many people as I could for as long as I could.”</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">As I look back on
the last year of 70 graduate level credit hours of classroom work, and look
forward to the next 12 months of clinical rotations part of me knows that I
didn’t have to take this path.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">No more
than Travis and Cassandra Bailey had to ask for a full autopsy of their son
Gavin, or that Tanya Kennedy might pursue the best and brightest minds in her
area to join our fight after her precious Christian passed away.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">We do what we do because of two reasons: 1. there
is a legacy of our children fighting for their last breaths that will haunt us
until we take our own last breath. 2. Because we have been afforded to
opportunity to stand on the shoulders of giants who have gone before us and
given us a solid footing from which to launch our efforts that other may not
have to suffer through what we have.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">In a recent note I
spoke of the Gavin Bailey Tissue Repository in Pittsburgh and mentioned some of
the early successes and breakthroughs that have been made in just 2 short
years.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">Soon I hope to be able to share
my findings of my research for they should offer each of you a measure of
comfort and hope, but they have not yet been accepted for publication. But I
would encourage each you who are reading to solidify your contribution to our
cause by either completing a registry form or by updating the data you have
previously entered.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">That 15 minutes of
your time may say another person days, months or years of worry.</span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">As I close this
note I offer up prayers of peace, comfort, hope and love to the parents and
grandparents of children who were destroyed by the terror of Paris, and I hope
that they will find encouragement and hope in their communities as I have found
comfort in mine.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">Each of you is my
neighbors, each of you has a choice to uplift another, and if you are facing
the terminal diagnosis of a child with LCMN please take a moment and consider
what positive legacy your child may have on the world by acknowledging the gift
that is afforded the world through the most caring and complete physical they
will ever have.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span></div>
<br />
<div style="line-height: 200%; margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: calibri;">For questions on
this essay please contact me at </span><a href="https://www.blogger.com/null"><span style="font-family: calibri;">pjscoleman@outlook.com</span></a><span style="font-family: calibri;">.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">For information on the Parent-2-Parent
support group for terminally ill children with LCMN please call or text
919-455-8787.</span><span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span><span style="font-family: calibri;">To inquire about Clinical
autopsy gift for the Gavin Bailey Tissue Repository please contact Dr. Miguel
Reyes-Mugica via email at </span><a href="https://www.blogger.com/null"><span style="font-family: calibri;">miguel.reyes@chp.edu</span></a><span style="font-family: calibri;"> </span>
<span style="mso-spacerun: yes;"><span style="font-family: calibri;"> </span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-4917474037259250562015-08-18T12:38:00.001-07:002015-08-18T12:38:22.051-07:00Awake and Ashamed<div class="MsoNormal">
It’s 5:48 am. I lie awake staring at nothing. I am not
tossing or turning. I am lost. I am lost in the memories of three years ago
this very minute when the interminable hum and cycling of an oxygen condenser
were no longer intermingled with the panting of my son trying to inhale and
retain every last molecule of oxygen because his heart had given its last beat
unable to meet the demands of life. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Five hours before, exhausted from the challenges of trying
to live life while caring for the dying, I could no longer keep my eyes open. I
could not continue to hold my son’s head as he struggled to keep his airway
open as big as possible, I could not stay awake to engage in the staccato conversation
of the end stage lung disease. For six weeks he had labored against all odds as
his oxygen saturation dropped from 98% on room air to 92% on 2 liter of oxygen
till on this evening his oxygen saturation was 64% on 4.5 liters of oxygen.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But now it’s 5:48 am and I can’t sleep, I don’t want to
sleep, I just want to run away from the memories of shame. I am half a father, and today cements that
fact into my brain in a manner like no other.
One of my two children died before they were close to leaving my home. This was no car accident, no random excess of
booze or drugs or suicide; He died before he was old enough to experience any
of those ‘self’ induced endings. He died
of a disease of ignorance. I did not
know the answer, and no medical professional in the world knew the answer, heck
only a couple of them had even thought to begin asking the right questions.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
13 and a half years earlier I stood gazing at my new born
son face down in a neonatal incubator.
He had been born following emergency C-section because his umbilical
cord had been wrapped twice around his neck.
Only the presence and skill of the Obstetrician saw the events as they
unfurled before our eyes, and all of a sudden I went from caring for my very
pregnant laboring wife to being a fool alone in a birthing room with no nurses,
doctors or my wife. I wandered the halls
of the hospital aimlessly until I walked into the NICU and asked if my son was
there.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Surprisingly he was, the NICU nurse turned and pointed to a
little mass of flesh curled up under a heat lamp. He was small, and he had all four limbs, and
a C-section newborn head (too perfect to be true), and his back was covered with
a brown, black, blue, red and yellow wildly bumpy and irregular thing that
looked like either afterbirth or a poor attempt at a Hobo’s blanket. I in my paramedic wisdom and not wanting to
appear like a complete idiot asked the classic newborn questions: <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“What were his APGAR scores?” 6 and 9, good stuff. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“And what is his O2 Sat?” Oxygen saturation is a good
measure of health. 98% on room air. Good
stuff again. Below 94% I would start to be concerned, below 90% and I would be
worried and start oxygen supplementation, below 80% and I would have been
looking to intubate, so very good stuff.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“And his blood glucose levels?” 48. Good before a first feeding, have to give the
growing body and brain all the sugar we can.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“And I’m not sure of your protocols, but when are you going
to wipe him off?” What do you mean that’s him? What are you telling me? Giant
Birthmark? You bet I need to see the doctor, because I am such an idiot.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As I look at the clock it’s still 5:48, and Lizy rolls over
in bed and asks me what time it is and I tell her. She sighs the sigh that only the mother of a
dead child can release at the moment of remembrance, an echo from the broken
heart that emerges from the mouth like the distant moan of wind on a windswept
and empty beach where just hours before there was the frolicking and laughter
of children playing in sand and surf.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s 3:12 am on Black Friday 2012, I am sitting in a kitchen
in upstate Tennessee sitting across from a friend, a surrogate son, a big
brother of another mother to my children.
He is strong and fit, a multi-tour veteran of the US Army who has been
all over the world being the sole medical provider of small groups of fighting
men. And he is significantly less drunk than I am. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It has been about three and a half months since Evan died,
and we couldn’t face either doing Thanksgiving at home nor with people who
would have no idea what we were feeling so we hopped in a car and drove 12
hours to a farmhouse in the middle of nowhere. We walked in the pastures and
played with the dogs, and horses; I can’t remember if the goats and chickens
were there yet, but it didn’t matter we were in a place of love and respite.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The only thing missing was Evan, and so early on that Friday
morning I let go of all pretense and machismo.
With tears streaming down my face I shared with the only person I knew
would understand the fact that I had let my son down. I had failed in my fundamental responsibility
as a father, to get their child to the point of beginning his life on his own
terms. The only other person I could
imagine with a similar mindset was this Man among men across the farmhouse
table. He had faced the same inner
demons, he was an Army Combat Medic; a person tasked with ensuring that his
entire team got home alive after each mission.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In my mind I had failed my mission. The debriefing was
painful, cathartic and forgotten the next day; buried in the graveyard of ideas
and concepts not fully grasped or appreciated until the years of wisdom allow a
person to fully put them to rest or come to terms with. No one knows the pain of a father who has
failed to meet his own expectations; and it takes a person of similar
understanding to shed light on the unreality of those expectations, and to
shine light on the dimness of self-inscribed responsibility for defeat when
there were so many other factors in play.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s 5:49 am today.
The shame I feel is self-serving and destructive. What I now grasp is that I was ignorant. I
lacked the knowledge to make the critical decisions. In some cases the information was withheld
from me (Medical Ethics conundrum Beneficence vs, Autonomy while Justice is
ignored), in others ways the information did not exist in a usable form for
decisions to be rendered in the full light.
It felt like the dawn right now.
We are socked in by clouds in the North Carolina Mountains having run
away from the pain of home on this day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am no different than many fathers who have lost their
children to rare diseases. That my
processing of my grief takes the form of writing and sharing makes me no better
nor worse than any of them but it has given me critical insights on the
grieving process and the shame that often accompanies a father’s thoughts. But now my strengths should be more fully
expressed in the realm of academic knowledge to shed a little light on our
ignorance.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While I finish up work on a couple of papers I wanted to
share with you this link to an article I referenced in my last post. <a href="http://www.ncbi.nlm.nih.gov/pubmed/26266759">http://www.ncbi.nlm.nih.gov/pubmed/26266759</a>
If you recall I hinted that new material was and is being developed by an
amazing group of individuals in Pittsburgh.
While this is just the abstract it is a taste of what’s coming. If this work fascinates you or you see the
common links between NRAS and BRAF and other cancers then think about lending a
hand to the process. Reach out and contact
me, leave a post, take the first step in becoming a member of the Army of Citizen
Scientists and see how with your help we might shed more light.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you are unable to join the fight on the front lines but
feel moved to support the fight moving fr<o:p></o:p></div>
om shame and ignorance to enlightened
empathetic knowledge we are working on direct links into the research foundation
funding apparatus, please be patient. <br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The days like this will come and go, each one a marker of
time passed or of time passing away.
Evan’s Birthday – February 16, His remembrance day – August 18, Each
Father’s and Mother’s day and all the other days that can serve either as unscalable
obstacle or like a riding crop to a thoroughbred’s
flank. Be it a birthday, Christmas or the 4<sup>th</sup> of July the memories
can either inhibit progress toward lasting legacy or be a terminal point of
sorrowful reflection.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Everyone who knew Evan personally and all those who have
come to know him vicariously through others will know that the weakness of
today is just that; he would want us to rejoice in his life, love and
faith. His passion was knowledge,
information, light and fun. And so those
principles are worthy pursuits for us all.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So from this dim, dreary and humid locale I implore you to
find a little sunshine today and share it with all who you meet. With Love, Light and Laughter we wish you the
best of days from Blowing Rock, North Carolina to wherever you are in the world
as you read this. <o:p></o:p></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-76804575505111645132015-07-07T03:40:00.000-07:002015-07-07T03:40:10.703-07:00Gavin brings Hope<div align="center" class="MsoNormal" style="line-height: 200%; text-align: center; text-indent: .5in;">
<span style="line-height: 200%; text-indent: 0.5in;">The death of a
child wrings you out like a chamois at a high school carwash on a Saturday
morning in July.</span><span style="line-height: 200%; text-indent: 0.5in;"> </span><span style="line-height: 200%; text-indent: 0.5in;">You are left damp,
wrinkled, dirty and without a semblance of love discarded on a line to be dried
crispier than a tortilla chip in Texas.</span><span style="line-height: 200%; text-indent: 0.5in;"> </span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
You are left with
a hollow heart, a little more jaded and perhaps an increasingly cynical view of
what’s still remains. Time does not heal
all wounds. But it does give a chance
for seeds to sprout, rain to fall and every once in a while some sunshine to
break through the clouds of heartache. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Three years ago I
stopped writing for e-nevusnotes, the blog through which I detailed my son’s
journey through the last years of his life. The sign off rant was wrong. But to
get to this point has been a long, twisted journey that just happened to pop
out on a rain soaked garden in Pittsburgh last weekend, the weekend halfway
between Father’s Day and the 4<sup>th</sup> of July.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
But before I
continue, perhaps a little Donald Trump humor would lighten the moment. An American, Brazilian, Indian, anda Mexican
walked into a café. Now before you get your proverbial tighty whities in a
bunched up mess, this is a true story.
It is the story of child heroes, the love of humanity, the compassion
for justice and the origin of a real “Captain America”.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Over 30 years ago
a doctor in another country happened upon a disease that presented such a
conundrum that it wouldn’t let him sleep.
And when he studied this rarest of rare disease processes he was
mortified by the deaths of children due to complications. These complications
were the things only a parent could fathom, and then it was only in their worst
nightmares, and only if it was their child.
<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Miguel Reyes-Múgica,
MD, is a pathologist, a person committed to understanding the physiology of
life from the macroscale to the micro to the biochemical. His entire life has been about autopsies, not
to find out why a patient died, but to allow each patient to tell the story
through the most thorough and detailed physical they have ever received. All this is done so that someone else won’t
have to die of the same cause. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
He is our, “Mexican,”
he is also a student of Congenital Melanocytic Nevi, and as a student he has
always craved having a living library of nevi tissue to examine, study and
learn from. Dr. Reyes is the Chief of Pathology at Children’s Hospital of
Pittsburgh which is part of The University of Pittsburgh Medical Center (UPMC). I have personally known him since 2001 when I
met him at Snow Mountain Ranch, Colorado, speaking at a Nevus Outreach
conference; he was at Yale at that time. This past weekend he invited me to his
laboratory which is committed to pigment diseases of the neural crest.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
To learn more
about Dr. Reyes this links to a in depth 2007 interview <a href="http://www.pathsoc.org/conversations/index.php?view=article&catid=58%3Amiguel-reyes-mugica&id=82%3Amiguel-reyes-mugica-full-transcript&option=com_content">http://www.pathsoc.org/conversations/index.php?view=article&catid=58%3Amiguel-reyes-mugica&id=82%3Amiguel-reyes-mugica-full-transcript&option=com_content</a><o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
The, “Brazilian,”
in our story is Claudia Maria Salgado, MD PhD, originally from Federal
University of Goias in Brazil. She is a pediatrician
and has been a student of pigmented disease for many years. She has dual roles
in our narrative as she functions in both a clinical role with patients and
parents; and as a researcher of nevi tissue. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Dipanjan Basu, PhD,
who fulfills the role of the, “Indian,” in my story. Dipanjan aka ‘Deep’ is a
microbiologist whose love of his laboratory is only rivalled by the love of his
children and wife who see him intermittently as he delves into the cells that
represent the ‘enemy’.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
For all the
medicine and academic prowess of the first three parties the bond I have with
the, “American.” is one I wish we didn’t share.
Travis Bailey lost his son Gavin at 17 months of age. If Gavin is another child hero robbed from
his parents by an insidious disease, then Travis is my vision of, ‘Captain
America.’ I never saw a cross word come
from his mouth and he is always trying to keep the greater good central in his
role as son, husband, and father.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
In a moment of
serendipity, Travis and his family met Miguel and Claudia seven days after
Gavin was born. Everyone became fast friends to the point of family. Time went by with the friendship growing and
blossoming in the light of a common goal of living life to the fullest when a
child has CMN. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
For the
overwhelming number of people with CMN there are no repercussions associated
with either melanoma or neurocutaneous melanocytosis(NCM), but for a select few
the worst case scenarios are visited upon us.
For the Bailey family their world received a devastating blow around the
time Gavin turned 6 months old. The
melanocytes visible on his body and invisible in his brain and spinal cord
conspired and became a cancerous tumor within his central nervous system.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
According to
Travis, and confirmed with photographs, Gavin was an electrically engaging
child. The sort of curiosity of life and
people that was evident in the near mischievous twinkle in his eyes as he grew
towards his child hood. A childhood that
would be cut short because at that six month diagnosis his family was told that
his condition was terminal. There were
no cures, there were no medicines, only trials of this drug or that. There just hadn’t been enough research.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
For those of you
who knew of Evan or followed his story on this blog, that is an all too
familiar story. So you are left
scrambling to try and find some way to save your child. You will learn the medicine, you will travel
the globe, you will spend all your money and much more. Anything in the world will be done to have a
doctor take back the words, “I’m sorry”.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
I am sorry. What
does that mean? I was told repeatedly
as a child that if you say those words you are promising on your honor that you
will never commit such an act ever again.
I know that Doctors, Nurses, PAs are all trying to show compassion. I
also know that their intentions are well placed, but with a dying child in your
arms these words are cheap, empty and without true intention. They actually hurt more than, “Well that
sucks,” because they convey pity and disconsolation in an attempt to disconnect
from an awkward situation. But as usual,
I digress.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Gavin lived his
short life to the fullest. The tumor at
one point rendered him paraplegic but a motorized wheelchair allowed him to
keep up with his older sister and he would play tag with her and a number of
other children from his hometown near, Sommersville, WV, on the big open floor
of a local gym.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
But cancer is
unrelenting. Because there were no answers, his decline was predictable. For Miguel this was the antithesis of his
very being – he would have given anything to have prolonged Gavin’s life. He
already had set up a tissue repository at UPMC, a place to study this disease
that was robbing the Bailey family of joy while stealing Gavin away from
them. But there wasn’t enough tissue,
nor was it alive. There just wasn’t enough time. It was all just so unfair.<o:p></o:p></div>
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Four months before
Gavin passed away, Miguel and Claudia took Travis and his wife aside and talked
in more detail about what they did professionally, and how, the Baileys,
through Gavin might extend his legacy of smiles by helping get a truer
understanding of neural crest fatal disease processes. They proposed that Gavin’s tissue be the
first living tissue in the repository, that if the tumor cells could be kept
alive they would offer an invaluable insight into a disease that has never been
studied in this manner.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Tired of their
pain and seeing an opportunity to truly help others the Baileys consented that
Gavin should be autopsied at his death, but that all measures to prolong his
life should be exhausted up to that point.
Gavin received radiation therapy in the 2 days prior to his death, and
in the hours after he died, Travis carried him in his arms and handed him to
Miguel and Claudia in a private moment and private space that was filled with
love, grief, profound sadness and a glimmer of potential that someone in the
future may be helped. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Travis told me
that only good could come from his actions.
He had reasoned that Gavin wouldn’t need those tissues when he was
buried; and he knew Miguel would do all he could to ensure that parents and
children of the future would have better options for care and life. No one had
done this before, no one had seen the path to doing the right thing, this was a
job that only a, “Captain America,” could get done. And no matter the personal pain suffered to
this moment, it was being done for all the right reasons.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
And so was born
the Gavin Bailey Tissue Repository for Neural Crest Disorders. But three things were missing: Money, Tissue
and Life. Enter, ‘Deep.’ Dr. Basu began to tend the tissues. By his own admission he is a lab rat, rarely
coming out into the sunshine and never meeting patients or their families. He just wanted to get to know the, ‘enemy.’ The good cells gone bad were to become his
life – to find them, separate them, to
grow them, to study them and to KILL them. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
A week last Friday
I took the day off and flew to Pittsburgh; Miguel wanted me to see
something. Well to get the whole story
correct, Mark Beckwith of Nevus Outreach told Miguel that I should see what he
was doing. So after a long afternoon of
travel, I walked into a Café in Pittsburgh and had dinner with Miguel, Claudia,
Dipanjan, Travis along with Tanya Kennedy and Taylor Scott. Tanya lost her son to this disease nine
months ago after he had lived and died a short but valiant battle; and Taylor
is the Executive Assistant at Nevus Outreach.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
We laughed, we
cried, we shared, and we prepared. We prepared to tour the UPMC Children’s
Hospital specifically the clinical laboratory and then the research laboratory
and finally the tissue repository. We
were also scheduled to hear from a doctor about end of life issues related to
children.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Saturday was quite
possibly the hardest day I have been through in the past 24 months. The first 12 months after Evan died were a
blur of tears, anger, frustration and an overwhelming sense of failure. That this weekend was a week removed from one
of my personally most difficult days, Father’s Day, seemed almost
fatalistically cruel. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
The Diagnostic Lab
was fascinating and I would be lying if I said I wasn’t paying slightly more
attention at this juncture because I had a Lab Medicine Exam on Monday. As we crossed the literal bridge from the
clinical hospital to the research labs the group got noticeably quieter and a
little more subdued. I suppose the
researchers were anxious that their work would be appreciated, and the parents
perhaps being overwhelmed. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
When we reached
the Rangos Research Center which houses the research labs, we were privileged
to receive a fantastic guest presentation by Dr. Scott Maurer about the
clinician’s side of end of life processes. Then things got surreal. If Dipanjan had been quiet and reserved at
dinner he was active and engaging, a ball of electric energy as he showed us
this and that. His work obviously brings
him tremendous joy and the opportunity to share this with lay people who would
be fascinated brought a palpable energy to his demeanor, and then the first
bombshell hit.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
“These are Gavin’s
living tumor cells,” he shared with reverence as he brought a specimen jar into
focus on a video monitor attached to his microscope. There they were in two dimensional
imagery. They had done it. They had discovered the right conditions and
media to allow these cells’ lines to grow and replicate. They had enough cells to run serial trials to
generate research, they had enough success that other institutions were coming
to see how they had done it, and other institutions are asking for cell lines
so that they might study them. This was
a “WOW!” moment like no other. I will never forget the manner in which Travis
crouched down to get a closer look at the screen, there was a moment of slack
jawed awe, appreciation and love that only a parent could fathom in that instant.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
As we gathered in
the conference room preparing to hear some of the details of Dipanjan’s work,
Miguel took the time to share his personal history with CMN and why this
project was so special. But Travis, a
quiet and reserved man by nature shared his appreciation with a gentle smile
and a wrinkle at the corner of his eyes as the story of Gavin was told. Miguel called us brave and courageous, even
as we feel anything but those things. He
spoke of other parents 50 years ago who made similar contributions to research
so that there are now cures for many childhood leukemias.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
When Dipanjan took
the floor we didn’t know that he had been preparing for over 6 weeks for our
visit. There are interpersonal skillsets that clinicians hone over years of
practice that researchers do not. One
only has to watch an episode or two of the <i>Big
Bang Theory</i> to appreciate a caricature of this truth. And then before he
began he confessed that dinner the previous night had driven a personal note
home to him. Real people, patients and
parents, will forever look to the lab for answers that only non-clinical bench
scientists can provide to fundamental questions.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
His work is due to
be published soon, and I will not steal his thunder here, but it was mind
blowing what has been made possible through Gavin. Not the least was the addition of 126 other
patient tissue contributors, 20+ with symptomatic NCM.<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
Since I left
Pittsburgh on that Sunday morning, my head has been spinning. I went there with trepidation, fear and no
small amount of dread. I left inspired,
educated, and encouraged. Thank you
Captain America for your humble courage and pragmatic understanding of what
needed to happen. And thank you Gavin
for living your life to the fullest and leaving a living legacy that may yield
curative results in my lifetime. <o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
If any of this
sounds in even the remotest part worthy or honorable please feel free to
contact me at <a href="mailto:paul@e-colemans.com">paul@e-colemans.com</a>
regarding how to contact Dr. Reyes at UPMC regarding tissue or monetary
donation. As for the Life part of Gavin
Bailey Tissue Repository: A Mexican, Brazilian and an Indian walk into a lab
every day and give their hearts and souls that life will be long and joyful for
CMN children of the future.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq9_QgQU3-AiPSYEoHO_Y_4EzLpWjtM1MO4NhF0Mko9vauTReZd8JXG935uOUS2lZ_2W_6XGhJzs2JDH9Vgti6u70ip3KRE2urJ5V3WkDawU-0bcTinBV0bkrph7LgtEi1c8dJ1cZM7iU/s1600/Travis+%2526+Gavin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq9_QgQU3-AiPSYEoHO_Y_4EzLpWjtM1MO4NhF0Mko9vauTReZd8JXG935uOUS2lZ_2W_6XGhJzs2JDH9Vgti6u70ip3KRE2urJ5V3WkDawU-0bcTinBV0bkrph7LgtEi1c8dJ1cZM7iU/s320/Travis+%2526+Gavin.jpg" width="320" /></a></div>
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Travis and Gavin Bailey</div>
<o:p></o:p>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1724646900023102801.post-8705355943630598742012-12-22T04:35:00.001-08:002012-12-22T04:35:59.713-08:00Moving ForwardI will never do justice to the memory of my son, nor replicate the emotions or events that have been encompassed in the posts to date. That said, I have begun a new blog that is part of my ongoing process of trying to come to terms with the loss of such am amazing spirit with whom we were charged to watch over for the past 13 years.<br />
<br />
You can reach it by going to <a href="http://e-observations.blogspot.com/" target="_blank">Observations</a><br />
<br />
We thank you for coming here and taking the time to feel some of the emotions associated with dealing with a chronic fatal disease in a child, and we pray that you will never have to experience this yourself.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1724646900023102801.post-58777283187055870392012-08-23T06:11:00.000-07:002012-08-23T06:11:17.886-07:00A Year of Firsts<br />
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."<br />
<br />
This is not the end. It is also not the beginning. It can at best be described at half-time. For those who follow Evan and his story through this portal, there is no small amount of voyeuristic horror, fear and revulsion of a story that holds only one central theme of the pain and suffering of a child become man and now a memory to those left behind. Evan’s story has at times reached out and grabbed readers by their throats and shaken them from the calm reverie of their lives. <br />
<br />
There can be no apologies for those words and the emotions that conveyed a tale that so long as it was being written was in itself confirmation that it was not happening to the typical reader. For those who read with intimate knowledge of the agonies of this journey a large debt of sorrow and regret is extended for the pain and memories that Evan’s story may have dredged up.<br />
<br />
At 5:45 am on Saturday, August 18, 2012 Evan MacGilvary Jenkins Coleman breathed his last breath. The details of that moment are so intense, personal and overwhelming that they will not be recounted here. What can be shared is that the previous day Evan had begun to decompensate (A medical term indicating that his body was no longer able to maintain the necessary balances required for his life to continue) As the evening approached he fought to find a position of comfort that ended with him doubled over in his bean bag while watching ‘Pirates of the Caribbean’ by way of a mirror on his knee. <br />
<br />
As the evening wore on it was clear that he was going to be unable to sleep and the only thing any of his medications was accomplishing was to take the mental edge off the distress of breathing 80 times a minute, unable to cough, heart rate over 160 and a steadily decreasing oxygen saturation level. And as Evan came to an understanding that his fight would soon end, he leaned back into the arms of his mother and allowed her to cool his brow. The five plus hours of this physical ordeal is akin to running over two marathons. <br />
<br />
Fighting to the end he continued to sip water through a straw and at 4:45 even asked for a medium Coke. At around 5:30 his final words to his parents were, “I love you.” As the fight and life left his body fifteen minutes later, a calm serene peace descended on his body and he breathed his last. No one will ever be able to say that he did not fight the good fight far longer than any other we have known. Many medical providers have commented along Evan’s journey that his lack of complaining put many adults to shame and set a high standard and wonderful example for his fellow patients.<br />
<br />
And so began the Year of Firsts. There was no fanfare of Angels trumpets; there was near silence due to the absence of ragged breathing and an oxygen concentration machine turned off. For those who with the morbid fascination of an entranced audience who have been watching and praying for a different outcome, the moment of collision is but the beginning of the dissipation of energy that had been brought into the impact equation. (Impact equations are a fundamental topic of Physics: The Law of the Conservation of Energy states that energy cannot be created or destroyed only transformed. All the energy going into the initiation of an event must be accounted for at the conclusion of the event.)<br />
<br />
The external image of a slow motion train wreck serves the purpose of creating a picture of an unstoppable event resulting in cataclysmic damage that resolves itself not in the moment of impact but through the derailment of cars, collisions with unmoving adjacent objects and structures and general chaos and mayhem. If this verbal description has not grabbed your imagination, please consider watching the beginning of the Steven Spielberg movie “Super 8”.<br />
<br />
The internal image for those closest to the event the image is that of a nuclear bomb disposal unit that has suddenly realized its failure as the white hot searing light of nuclear detonation announces the unit’s failure to contain and render the problem inert. The resulting crater lies across all life paths of the unit’s members and the crystallized glassy debris is left behind to explode on contact or cooling at unannounced times and circumstances that leave the impression that one is walking in a minefield where every step, every turn, every attempt at avoidance merely sets off another explosion of a glassy radioactive mine.<br />
<br />
The hole left behind is an immense crater of unexploded ordinance that reveals itself in sudden overwhelming waves of intense painful sadness. There is no way to cross this hole quickly without imminent self-destruction, as every turn reveals a trip wire of a memory that explodes into an instant full realization that there will be no more trips to McDonalds for snacks or trips out to relieve anxiety. There will be no more need for Evan’s laundry to be done, or finding out that the last load in the dryer was his. The discovery of a casually discarded jacket over the backseat of the car is enough to initiate total meltdown.<br />
<br />
Let there be a necessary intervention of tangential information. Evan is in a better place – whether your belief system runs toward Heaven as does ours, or you are agnostic or atheist, there is no denying that he is no longer suffering the agonies of suffocating to death as a disease process robbed him of the ability to exchange oxygen and carbon dioxide in his lungs. Therefore this writing and the services of this weekend serve a singular purpose of providing those who mourn Evan’s loss a place to jump back into life as we begin the process of coming to terms with our loss. <br />
<br />
The metaphorical reference now returns to the smoking radioactive crater that lies in front of all paths of future travel. A look behind shows that the last five years have been littered with wonderful memories through a wasteland of the battles fought, some won some lost, in a war that seems to have been forfeit to an enemy known only as cancer. And as we look at this hole in the ground pockmarked with mines and triggers a salt rain of tears falls in an almost continuous downpour. There is a fear that the sun will never shine again, and any laughter is forced, inappropriate and cut short. Life seems both very wet and very over because we cannot step into the hole. The hole is deep, treacherous and functionally impassable. We are stuck.<br />
<br />
As we peer into the future we see that the salt water rain will fill the hole, and around us are growing trees and plants that over time will be fashioned into boats for travel across the salt water lake to the other side. The hole will never go away, but it will become passable and a beautiful place of remembrance.<br />
<br />
But today the future does not take away the Year of Firsts. Today it was the first time to request a table for 3 instead of 4. Three days ago it was a first visit to a funeral director and tomorrow it will be a first visitation. There has been the return of now unnecessary medical equipment; and then there was the gathering of pictures and things that defined Evan’s life which is not easy for a young man who lived such a rich life in just 13 short years. In the next twelve months among the known Firsts will be birthdays and Christmas, Halloween and Easter; and these can be accounted for, anticipated and supported. What we fear are the unknown Firsts. These are so numerous at the moment due to proximity of people, places, stories and events. But what will we do in 3 months’ time when we get an invitation for Evan to attend some event that he attended so joyfully in the past, or turning up a lost sock, shoe or mitten when cleaning a closet. Those are the times when the black sheet of overwhelming grief will only be lifted by the joyful sharing of the best moments of his life with people such as you.<br />
<br />
Final notes: A Memorial Webpage has been set up for Evan, where you can leave memories about Evan, pictures can be posted, and you can read how Evan impacted the lives of so many others. It also contains the details on services and connections to the ongoing Miracle 2012 legacy. It can be reached at http://www.cremationsocietync.com/sitemaker/sites/Cremat2/obit.cgi?user=688738Coleman This site will remain in place in perpetuity.<br />
<br />
Lil’ Duck: Lil’ Duck was born out of a legacy from another victim of cancer and her friends extension of vicarious living through another duck, Squeaky Edgar who travelled the world capturing events, stories and memories that were shared through a public blog so as to maintain an ongoing interaction with the world. And so our Lil’ Duck is a visual representation of the remaining spiritual presence of Evan in our lives. As Lil’ Duck goes with us, he provides a viable cover for those moments that we forget that Evan is not with us as we ask for tables for four instead of three, or we do activities that we know that he loved to do. We do not plan a blog for Lil’ Duck but rather convey the presence of his memory through pictures on facebook in those places that he loved to be. In the past day Lil’ Duck has been spotted in Evan’s Garden, at the Adidas Outlet store where he got his hallmark shoes, and at the Cracker Barrel where he loved to order pecan pancakes.<br />
<br />
And so this piece is done, the story will continue and the writings will be given life and venue in so other arena. In parting and in some ways hinting at the future; children no matter how unique should never be used as Guinea Pigs. For all the failures of medicine, morals, and people – guilt and regrets will never change the outcome of events in the past. And while we have traversed some rough days in the near past and have some rougher ones in the next week; we hold onto Peace, Hope, Joy and Love – knowing that the greatest of these has been, is and will continue to be Love.<br />
<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-57876699728177996272012-08-20T21:36:00.002-07:002012-08-20T21:36:56.588-07:00ObituaryEvan MacGilvary Jenkins Coleman, age 13 of Raleigh NC was called home to heaven at 5:45 am Saturday August 18, 2012. After a five year battle with malignant melanoma, Evan was held in his mother’s arms as he came to eternal rest.<br />
<br />
<br />
Evan was born February 16, 1999 in Royal Oak, Michigan (a suburb of Detroit) to Paul and Elizabeth (Lizy) Coleman nee Zimmerman. He was born with a Giant Congenital Nevus that was the origin for his cancer. His elder sister, Morgan, was a schoolmate of his at Our Shepherd Lutheran School in Birmingham, MI until the family moved to Raleigh in 2006. At that time Evan was enrolled at Wake Christian Academy. In the fall of 2006 he accelerated into the third grade, and a little over twelve months later he had his first of 6 surgeries to address the mass that had developed on his left back. He persevered through school until the chemotherapy medications interfered with his traditional school day. As a result he began home schooling in 2010.<br />
<br />
Starting as a Tiger Scout in Michigan, he continued Scouting at Holland’s Church and finally settling at Pack 24 in Clayton where he earned his Arrow of Light prior to crossing over to Boy Scouts. Some of his favorite times were camping both with the Scouts and with his family in the parks and woods of Michigan and North Carolina.<br />
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A Renaissance Man in a sound bite age; Evan loved music, art, math, animals, building, architecture and computers. In 2009 he won the NCCSA Fine Arts Science Fair project for his construction of a transparent body computer that powered 3 interconnected video monitors. Musically he played trombone, but really loved improvisational piano. He leaves behind a dog, 2 dwarf hamsters and over 30 fish.<br />
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A long standing LEGO builder, he vacationed in Legoland California as part of a Kids Wish Network trip in between a first round of chemotherapies in 2008. His love of life, courage, perseverance and grace under pressure inspired everyone from professional soccer players to the more than 100 volunteers who worked on creating the first half of Evan’s Garden – a place of peace and reflection. It is also the site of his first full scale building from his designs. <br />
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Some of his deepest frustrations arose from an intolerance of stupidity, lying, selfishness and whining. His outlets for these situations revolved around his artistic expression and first person gaming. Among his greatest disappointments was when people gave up on him because they gave up on their ability to help him. The eternal optimist he continued to research his condition within a week of his passing, and he constantly challenged his parents to see the brightness of his hope during the most difficult of struggles.<br />
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His name means ‘Little Fighter’ in Welsh, but he is remembered for the big fight he gave to his arch nemesis Melanoma. His journey of 6 different surgeries and 4 different rounds of chemotherapy were an ongoing testament to his will to live. In the end, as his ravaged body bore the brunt of the disease, he lay back in his mother’s arms as she cooled his forehead and let his father massage his feet as they sang songs of peace and love, prayed and read scripture. He passed into the peace he so richly deserved at 5:45 am. as his pain, anxiety, discomfort and torment were ended.<br />
<br />
Evan is survived by his parents, Paul and Lizy, his sister Morgan, Grand Father Rev. Paton Zimmerman who lives with the family. He is also survived by his paternal grand parents, Margot and Bernard Coleman of Asheville, NC; And extended family from Michigan, Pennsylvania, Georgia and England.<br />
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Visitation will be August 24, 2012 from 5-8 pm at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520. The church can be reached at 919-553-4784.<br />
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A Celebration of Life Service will be held at Holy Cross Lutheran Church, 2920 NC Hwy 42 West Clayton, NC 27520 at 11 am. Holy Cross Pastor William Beyer will lead the service and Evan’s Grand Father Rev. Paton Zimmerman will deliver the sermon. Scouts in attendance will serve as ushers.<br />
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Arrangements are being handled by Cremation Society of the Carolinas, 2205 East Millbrook Road, Raleigh, NC 27604.<br />
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Evan’s Fund was established in conjunction with Miracle 2012. (http://Miracle2012.webs.com) These efforts have resulted in the establishment of Evan’s Garden and a concerted effort to eliminate Evan’s medical debt. Going forward the focus of these efforts will revolve around establishing a research protocol to attack the cancer Evan suffered from and to reach out and fund those organizations that both helped and inspired Evan including The Children’s Inn at NIH, Nevus Outreach, Inc., the LEGO Foundation, and others.<br />
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Thank you to all the people who have been a support to us.<br />
<br />
Life is like a Road<br />
<br />
<br />
<br />
Life is like a road,<br />
<br />
The road is often not straight,<br />
<br />
or clear,<br />
<br />
and sometimes the road splits,<br />
<br />
and we must choose what direction to go.<br />
<br />
<br />
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Sometimes we can walk this road with friends,<br />
<br />
other times we must walk alone.<br />
<br />
<br />
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But when you get to the end of the road,<br />
<br />
and all is said and done,<br />
<br />
nothing really matters anymore,<br />
<br />
except for the journey,<br />
<br />
and the love you've shared and received during it,<br />
<br />
and the fact that this love will stand the test of time,<br />
<br />
and go on forever.<br />
<br />
<br />
<br />
-Evan Coleman<br />
<br />
July 30, 2012<br />
<br />
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<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-5185398772458968712012-08-01T20:30:00.003-07:002012-08-01T20:30:53.955-07:00A Brief History of Wilmington NC – Evan’s perspective<br />
This morning Evan woke up in Wilmington, NC at around 8:30 am and with that act a day of equally intense and juxtaposed emotions was begun. In the last 8 hours we experienced heavy concern, deep soul defining sadness, sweet uplifting joy, profound gratitude and humility, and then full circle to heavy concern tinged with hope. But as with all things these last six weeks nothing is realized without a firm foundation.<br />
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In this situation, the foundation laid was actually the big events of the past weekend: The Concert, and the Grand Opening of Evan’s Garden. With no reservations or qualifications, nor cynicism or sarcasm; both events were roaring successes. They of course could never have been realized without the overwhelming generosity of time, talents and gifts of friends and family. To try and frame the support; there were over 100 volunteers who participated in preparing a blank grass canvas into a warm and colorful place of peace and tranquility that is Evan’s Garden; On Saturday, over 30 volunteers, 4 gifted music groups (Erin Nenni, When Forever Comes, Scott Barton with his Vocal Flava, and The Josh Pepper Band), a talented Stage Manager, an amazing MC, and a gifted Director put on a near flawless highly professional event.<br />
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Evan kept his distance as he is want to do at the moment, but listened, watched and observed all the people and activities, all while tracking down technical support issues on Saturday, and designing the next element in his namesake garden on Sunday. That said, the intense level of activity took its toll and Monday was very much a crash and burn day that had his parents on their knees more than once seeking one more hour, minute or second of time. <br />
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By midafternoon Tuesday the emotional and physical effects of the weekend had worn off to a great extent and Evan coming out of the woods after battling an infection for the past 5 days perked up enough to say that he wanted to ‘go out’. These words are buzz words for his need to leave the place he feels will be his Waterloo. A decision was made to go to the beach, a final family beach vacation, the destination: Wrightsville Beach just outside Wilmington, NC. 2 hours away, Hotwire for hotel, and we were loaded in two cars (Evan travels with wheelchair, portable oxygen concentrator, 2 tanks of oxygen, pillow and 4 blankets, computer backpack) and on our way.<br />
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Wilmington has a special place in our hearts as it was one of the first places visited in North Carolina 10 years ago. Evan spent July 4, 2002 watching the Wilmington/Wrightsville Beach Fireworks from the deck of a beach house on Topsail Island just up the coast. 3 years later he did his North Carolina City project on Wilmington, did you know that Walt Disney World could fit the entire City of Wilmington in its boundaries? In 5th grade he travelled to Wilmington Christian School with his own designed and built computer to win the State Science Fair. Since that time a visit a year to Wilmington with a requisite stop at the Trolley Stop hot dog restaurant became family tradition. Except we hadn’t been this year, but there was an itching in the pants and a searching for the chance. <br />
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Last night as we pulled into the hotel there was a heavy overcast and the streets were lively but dark. A late night food run came back wet but victorious and a midnight breakfast of chocolate chip waffles with syrup, bacon and eggs was hungrily devoured by a famished Evan. This would be a good time to note that it had been determined several weeks ago that the radiation therapy had sufficiently disabled (please read destroyed, crushed, liquidated or your own vernacular for severely damaged) the main tumors that there was no significant energy depletion from them; so that Evan’s weight loss was now only due to his own appetite. Enter Prednisone to reduce lung tissue swelling and its desirable side effect of appetite enhancer.<br />
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The sun rose at about 6:30 am this morning, but was nowhere in sight as the rain pelted down and wracked window and pavement alike, lightening sparkled and the wind whistled and howled around flagpole, lines and corners. There had been no family beach time last night and it looked doubtful at best this morning. When Evan woke up his eyes told a story of anxiety. This was not home, this was not familiar, this was not good. Effectively his trip came to an end when he took the medications necessary to calm him down.<br />
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After driving around Wilmington a la the late night drives to lull him to sleep when he was a baby, we gathered up our belongings and in the pouring rain left Wilmington behind Evan. During these remaining months with Evan there are diametrically opposed strands of thought that beg for attention: First is the strand that wants to secure memories by doing those things and going those places that will be indelibly etched upon the surfaces of all our minds never to be washed away; the second is the strand that never wants to know when the last time you’ll visit a memory place with Evan.<br />
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And so as the rain poured over the car, tears streamed down a face knowing that this was the last time Evan would be in a place so near and dear to his heart. Truly this treasured place of memories will never be the same in the future. A walk on the beach will bring back memories of carrying a little boy from surf to shower so as to reduce the pain of chafing sand inside a skin tight body suit. Or a calabash meal on the inland coastal waterway will conjure memories of family friends and a little boy with a boyish grin and quick wit. Even the wind whistling through the dune grass will draw out memories of children’s laughter echoing as they run through the hot sand to the waiting surf; prominent among them a boy dressed in royal blue from his head to his ankles. Yes, August 1, 2012 will mark the last day Evan was in Wilmington, but will also be a day that Wilmington will live in us. <br />
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An hour later as we traveled the flat ribbon of road that is I-40 in the coastal plain, the sun broke through the clouds and shone warmth and light on everything including Evan sleeping in the back of a cruising car. The warmth of the sun was as uplifting as the rain had been depressing and was a reminder that comfort follows heartache even if some time and distance must be traveled before it is realized. <br />
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Tears gave way to somber comforting joy. Comforting joy gave way for the humbling of being informed of a generosity beyond the means of most mortals. Our family, friends and none too few strangers who have become friends were able to help us raise slightly less than half our goal for Saturday night. This is not to be sneezed or sneered at, on the contrary it is something to be overjoyed about for we know the challenges of a down economy, many people gave to Evan to the point of hurting. We knew this and appreciated every last penny for it represented the best that people could do. As the evening wound to a close we also knew that the generosity of the players, teams, management and league office of the NASL had come together to allow accumulated funds to be 2/3 of the goal for Saturday.<br />
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When Lizy first began working for the Carolina RailHawks as the Head Athletic Trainer, she also became an employee of Selby and Brian Wellman the then owners of the team. It was a relationship at a distance, but the Wellman’s had a place in their hearts for Evan, for what he represented and for how he conducted himself. Being the owner of a minor league sports team is not an easy thing to do, and friends are few and far between just from the sheer logistics and influence that can be unseemly and destructive to team goals. That said, the Wellman’s went out of their way to give back to the community in so many big and little ways.<br />
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It can also be said that they never forget to take care of their own. Almost two years after turning ownership over to another entity, the Wellman’s did not lose sight of the importance of maintaining relationships, supporting the underdog and reaching out with a helping hand. With by far the largest single donation toward Miracle 2012: The Concert Selby Wellman donated a sum equal to the shortage of the nights goal and a little more. Humility is to know that some gifts when given are too great to be repaid, that the only appropriate response is gracious and thankful acceptance.<br />
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And so we stand humbled before our old friends, family, new friends, business partners and former employers; with a bowed head and grateful heart we acknowledge that we are not worthy of such divinely inspired gifts but we will accept them and use them wisely.<br />
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Exhaustion is now settling in on the rest of the family, and tomorrow we will once again seek to be revitalized by working on Evan’s Garden. If you would like to experience some peace and revitalization we invite you to come on by and we’ll put you to good use. To borrow the saying of a friend; “We started from dirt, and we’re gonna go back to dirt. We might as well get familiar with it in the middle”<br />
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Many peace and blessings to y’all. If we don’t see you in the garden, perhaps you’ll stop by to hear The Regulars as they Jam for Miracle 2012 on Saturday, Sept. 22 at 7:00 pm at the Big Easy in Cary.<br />
<br />
<br />
<br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1724646900023102801.post-38460169943404135942012-07-15T04:21:00.002-07:002012-07-15T04:21:30.844-07:00Dearest Evan . . .With two teenagers in the house, tensions sometime run a little high; and one of the side effects had been a distancing between Evan and his mom. The following letter was hand written by Lizy to Evan; it is reproduced here with both parties permission.<br />
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<br />
July 11, 2012<br />
<br />
<br />
Dearest Evan, <br />
<br />
Let me begin by saying, I have no idea what you are feeling or what you are going through, only you can. That being said, let me tell you how much I love you and always will, NO MATTER WHAT! I pray that I could somehow take away your pain and suffering, but I cannot. I have stayed awake at night shaking my fists at God in anger, saying, “How can you let this happen, take it from him, give it to me”. But it is not in God’s plan, it is not for us to understand how and why at this time. Maybe someday we will look back and have better understanding. I have even bargained with the devil-yes me…<br />
<br />
Sometimes I feel desperate and would go anywhere and do anything and spend every dollar I had to save your earthly life. That is unconditional love. That is what I have for you. I always have and always will. Because you are a special gift from God-even though you may not feel that way-I know you are.<br />
<br />
From the time you were born, I have questioned God, “what did I do wrong when I was pregnant with you?” We will never know, maybe the stress of Dad’s accident as a paramedic. It doesn’t matter, it was God’s will.<br />
<br />
We knew from a very early age that your name Evan, which means “little fighter” in Welsh, was well chosen-because you have been fighting your whole life. First they told us you might not live past 5 years old if you got NCM (neurocutaneous melanocytosis). You were on the prayer list at Beverly Hills United Methodist Church in Beverly Hills, MI from the time you were born. Then there was the time you got sick and a few days later you couldn’t walk. Do you remember that? You were hospitalized for about 4 days at Beaumont Royal Oak Hospital. Dr. Shwayder came to visit you (even though he was a Henry Ford Dr). He brought you toy snakes to scare the nurses with! Then there have been the “bullies” over the years saying nasty things to you out of ignorance.<br />
<br />
When we moved to North Carolina and saw the new dermatologist Dr. Prose at Duke, he told me that we had done the wrong thing. We should have had your nevus removed. I remember coming home and calling Dad (he was out of town on business) and crying, telling him what Dr. Prose had said-questioning our decision.<br />
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We attended our first Nevus Outreach Conference at Snow Mountain Ranch in Colorado when you were about 1 ½ years old. We talked to many of the families there about their experiences with their children. One family who had a boy about 9 yrs old at the time had tried to have serial excisions (about 10 surgeries). They said their son was in pain all the time and he had scars instead of nevus. They were sorry they had started down that path. At that first conference we went to in 2000, they couldn’t say it would significantly decrease your melanoma risk to have the nevus removed. The research just wasn’t there.<br />
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Dad and I sat up that night talking, praying. I still remember the room and the desk/table that we sat at. We decided this was the way God made you and “God doesn’t make junk”. It was that night we chose not to remove your nevus.<br />
<br />
Then came the terrible night in November 2007 when we got the phone call about your cancer diagnosis. We knew you were in for the fight of your life.<br />
<br />
You have been fighting now for almost 5 years Evan. I don’t know how you do it. You have more strength and perseverance than I have seen in most adults. I marvel at the way you handle yourself. You have never once complained. You are an excellent patient; trusting in your parents and your medical providers (well mostly). But most of all, through it all, you have trusted God.<br />
<br />
That is the most important thing-trusting and believing in God. Only HE has the power to heal you. HE is the “great Physician”. I pray every day that he will heal you-completely-Do you ask God for that?<br />
<br />
I remember one time after communion; you shared with me a few years ago, that you asked God to heal you. I hope and pray you continue to ask for that daily. It is ok to ask God for that, he wants to hear from you, whether it is in anger or love. He is a big God, with big arms, that you can always run to and always talk to.<br />
<br />
I know Dad has talked to you about this journey and how it feels like you are alone or have to travel it alone. I’m sorry it feels like that sometimes. I experience that at times too. I feel scared and don’t know what to do sometimes. That’s when I go to God because HE is our only source of hope and peace.<br />
<br />
There is always hope, don’t ever give up hope. Miracles still happen and I believe that a miracle can happen for you Evan. That’s what I pray for every day.<br />
<br />
I love you today, tomorrow and always,<br />
<br />
Mom<br />
<br />
p.s. Sorry if I annoy you most of the time, I really am trying my best to do whatever you want <br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1724646900023102801.post-37292646321598494552012-07-09T12:27:00.002-07:002012-07-09T12:27:43.970-07:00Hey Dad . . . When am I gonna get better?<br />
Settling on a title for this post has almost been as difficult as capturing the events of the past week. Would it be “Recognizing Modern Miracles” or “The Calm Before the Storm” or “Ctrl-Alt-Dlt”. But at 3:00 am on July 4, 2012, the above question came out of Evan’s mind and started a cascade of events that could only begin with – How do you answer that question for a child with whom the medical establishment has determined there is no curative course? So began one of the most profound conversations in the life of Evan’s family. And more important than how the question is to be answered; should or could that question be answered with any truth or integrity? <br />
<br />
But before things get too far too fast, it is necessary to rewind the tape and review the events of the last week. Last Friday, Evan completed the first course of his latest chemotherapy. Like all chemotherapies there are requisite pre-meds, co-meds and post-meds all designed to keep the patient’s body in a subdued state of compliance so that the desired poison is not rejected by the safety system of regurgitation. That of course is the medico-speak for attempting to deny the Technicolor yawn, anti-yak yak, etc. <br />
<br />
The problem with medicines that are designed to suppress body sensations, such as nausea or pain, is that they invariably dull the other senses such as executive function, reticular activating system, and intellect. In effect they cow the patient into a dulled state of submission where interaction with reality is occluded by a pharmaceutical fog. All this is to say that when Evan completed his course of chemo on Friday last, he also stopped a key pre-med, and by default regained a sense of self-awareness. So much so that he felt he was waking from a 2 week sleep and re-entertained the idea of interacting with the world rather than running from it.<br />
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This emergence from the pharma-fog coincided with one of the true low points of a low situation when the funeral directors had come to the house for a pre-event meeting (Sorry but that is the best this poor writer can do for euphemism). The two people who came out were the utmost in professionalism – well appointed, soft spoken, and were compassionate to the nth degree. A person who will be named later has told us that the beauty of gallows humor is that it is always funny, that said this same person topped themselves when they said that the professionalism of the funeral director was much more closely related to the potential of repeat business than to Evan’s singular situation.<br />
<br />
Perhaps only slightly less off color was the thought that anyone as good looking as Evan was likely to return from the grave as a Zombie and become an instant teenage heartthrob, but this twisted digression must come to an end because of what happens starting Saturday June 30th. Evan stopped taking all pain meds of his own accord.<br />
<br />
He also rejected using the available oxygen. A pervading fear had been that his pain would be too much to handle, that it would drive him to distraction. After almost five years of managing pain, Evan knows what he can and cannot deal with. What would drive any normal person to cry, “Uncle!”, “Mercy!” or “Oh Golly!” as one person once declared while having a dislocated finger reset; is handled with a dignified quiet demeanor that masks all pain from public inspection.<br />
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All this was happening very quickly, so what happened next was stunning. Family, having read so much grim news, descended like the cascade of a waterfall. After a quick jaunt from Detroit to Raleigh, in the Arrest Me Red Convertible Mustang, Uncle Jon (Paul’s brother) rolls up unannounced to lend a hand. Three amazing days later, after blood sweat tears and an ongoing duel with a spirit level, rake and pavers, he blows back out of town leaving behind a patio, an engaged Evan and smiles all around. It must have been similar to having the Lone Ranger drop by in the midst of a bank robbery, the only difference being Jon was drinking the 5 gallons of water each day instead of Silver.<br />
<br />
Friday morning saw Evan’s art teacher bring her high school group of home schooled students by and the first blocks of chaos were laid into the upper patio. Ms. Amanda and the Cruz Crew were terrific. Evan’s first real look at the garden space was when he looked out at his class mates laying block, installing edging and tidying up garden beds. His comment, “That’s so nice of them” was both understatement and foreshadowing for his increasing awareness of his surroundings.<br />
<br />
Friday evening saw the arrival, feeding, playing and departure of the Coleman Cousins of Canton (Michigan not a Swiss district) In the midst of a week at the beach, Aunt Mary drove Jeremy, Katie and Riley from Myrtle Beach through Raleigh on the way to see Nana and Poppa (Evan’s paternal grandparents) in Asheville. The whirlwind visit started with pizza and ended with ‘Catch Phrase’ a board game. Surprising everyone, in the middle of a round of Catch Phrase in walks Evan who takes a seat at the table and joins in without him or anyone else missing a beat. <br />
<br />
Saturday morning was busy (Weather alert – temperature in Raleigh topped 100+ degrees F this day, the first of 9 straight 100+ days) a small army of volunteers from Lighthouse Baptist Church in Benson descended on the house and set to finishing the fire pit / walkway project. Tim and Matt were phenomenal leaders, knowledge centers and tractor drivers. At the same time, Gene and Jack from Holy Cross Lutheran began the carpentry to box in the underside of the deck/porch; and mommy went off with Jeremy and Danielle to acquire the trees and shrubs to flesh out the botanical foundation of Evan’s Garden. <br />
<br />
All the while Evan looked out on the beehive of madness as pavers were laid, walkways prepped and the foundation for the shed of his design was dug. The comment of the day, “A lot sure happens in your garden when you’ve been asleep for two weeks.” <br />
<br />
Saturday mid-morning saw the arrival of Aunt Ginny and Cousin Meg who had driven through the night from Detroit. They had braved Ohio in the dark as a storm had wiped out all power to half the state. All this with a friendly 6ft stuffed bear filling the back seat. Little did they know that they were the talismans of power outages as we lost power on their second night in town. Kirk, the bear, decided to stay with Evan rather than returning to the Detroit area with Ginny and Meg when they left on Tuesday. <br />
<br />
Sunday, as Evan began to pull himself out of the oxycodone bog his mind had fallen into an unfortunate side effect had reared its ugly head – constipation. There is no nice way to say this, but Evan hadn’t had a substantial movement in over a week, and this lack of activity led to the Poo Fight of 2012; or how and why Evan holds fast to his teenage credentials in the midst of life ending illness. Ultimately nature will have its way, and things began to move in the right direction within the day. It is an arguable point who was happier, Evan or his parents, and both for very different reasons.<br />
<br />
Monday was a bittersweet day as Evan exerted reason and control over his situation by determining that it would serve him no purpose to travel to Dallas for the Nevus Outreach convention. The Nevus Outreach group has been a source of encouragement, support and inspiration for Evan and the family and every two years the convention had been a place of connection and collaboration. So instead it was determined that Morgan was old enough and mature enough to travel alone and represent Evan and the family at the conference. Monday also saw Pixel leave for a week of more intense training while travelling to Tennessee with Tim and Katrina. And Evan’s wish for a Lemon tree in his garden had been heard by Aunt Ginny and had become reality.<br />
<br />
Evan’s schedule started becoming more and more typical of the teenagers we all know and love. Stay up late, get up late, lounge around till the evening party and then start again. Tuesday saw Evan’s more focused effort to embrace a schedule of living life the fullest possible for him; it might be that the near death experience of Morgan, mommy, Meg and Ginny with a faulty instant exploding Roman Candle on Monday night was the trigger, but we may never know.<br />
<br />
Over the course of these events, a new friend had found Evan. Mr. Wayne Wall was introduced to us by neighbors Bobbie and Roger. Since we had met Wayne, he had brought raw materials, taken away trash, left us the use of a medium size tractor, made lunch for the entire crew on Saturday, and persuaded a couple of his employees to share their paver laying talents. On Tuesday afternoon around 3:00 pm, Mr. Wall asked if Evan might want to see the fireworks that night in a prime location with prime access.<br />
<br />
Around 5:00 pm Evan said he would like to see the fireworks. At 6:00 pm, Gene and Jack, the carpentry crew from Saturday showed up to add the doors to the under-deck space. At 6:15 pm Evan comes out onto the back porch and watches Gene and Jack work. At 7:00 pm Evan walks out of the porch, down the steps and up the walkway toward the firepit. What happened next is a beautiful moment. <br />
<br />
Dad meets Evan in the garden. Evan asks about who had done what pieces of work. By this point over 50 volunteers had worked on various phases and projects. Dad explains each of the completed phases and recounted who had done what work and how Evan had been the inspiration for much of the work done, and that while each of the volunteers had been thanked for their efforts, each of those volunteers had given thanks that they had been able to participate. Dad exits stage left for a 5 minute consult with mom on arrangements for fireworks transport. Dad returns from stage left to find Evan sitting in a chair, eyeglasses placed carefully on a table and his head in his hands. Evan was crying quiet sobs. When asked what he was crying about, he replied, “I can’t believe all these people gave so much love”<br />
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The fireworks were awesome and the access and egress were better. After getting home and falling asleep for a couple of hours, Evan awoke at 2:30 and started to engage dad with this question, “ Hey Dad . . . When am I gonna get better?” WOW!!!! Possible answers – 1. You’re not; 2. The doctor’s don’t know; 3. In God’s timeframe? It’s not like parents over the ages have not been faced with the same question whether the ailment is a cold or the flu; a twisted ankle or broken arm; even perhaps Chicken Pox or Measles. But from a person facing cancer let alone a case determined to be without a cure within the scope of modern medicine. <br />
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It would serve no purpose to rehash the internal monologue that determined that the first answer given, however well intentioned, was not worthy of the depth and intensity of the question. But an internal argument ensued and it was decided that a more forthright and a more engaging direct answer was the more appropriate course. The next hour was filled with personal references to injuries, illnesses, recoveries and healings. These touchstones were interweaved with the reality that healing was not so much perfecting what is broken, but coming to a new place of balance and appreciation for the remaining gifts allowed us to accomplish, feel and do within the patched framework that our bodies become over time. <br />
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From personal the conversational became spiritual as Psalm 23 became a road map of discussion from good decisions and intentions based on sound instruction leading to the inevitability of walking in the Valley of the shadow of death. That journey at times must be travelled by ourselves, but we are never alone; there are always people and signs pointing us toward the finish line and praying and cheering us on toward completing the race.<br />
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And finally we came full circle in our early Independence Day conversation to a family favorite poem:<br />
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Footprints in the Sand<br />
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One night a man had a dream. He dreamed he was walking along the beach with the LORD. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand, one belonging to him and the other to the LORD.<br />
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When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.<br />
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This really bothered him and he questioned the LORD about it. "LORD you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me."<br />
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The LORD replied, "My precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you."<br />
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Evan’s conclusion, “Can we put that in the garden?” and a 3:30 am FB message was sent to a family friend at Cape Fear Marble and Tile in Wilmington, NC. And this poem is being laser etched onto black granite markers that will help guide travelers down the curving path of life toward the destination of peace. And after a little more sleep, that’s when the fun really started. <br />
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Evan’s daily schedule really changed on this night. Every day when he wakes up, he comes down stairs and sits on the back porch swing waiting for his dad to see him. This is dad’s cue to stop working on the garden and start getting ready to drive. Evan’s never really sure where he wants to go, except that it is away from the house. He will rest in the garden intently observing people and the action, but most of all he wants dad to stop digging/paving/planting and get a new shirt on to be presentable to the world. <br />
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July 4th trips were taken to the bookstore for a two hour read followed by the movie theatre and The Amazing Spider-man, and on the return home a revelation was shared – Evan thinks that his home is like Krptonite, and so long as he can get out each day his mind will win out over his body. So on another day it is a local mall and Best Buy, or the next day after - Best Buy and a different local mall. Two nights ago it was to see the cooling tower of the nearby nuclear power plant at sunset, or yesterday a 10:30pm trip to McDonalds for an Ice Cream cone. <br />
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What is a miracle? And how would we recognize it in this modern world of requiring scientific process for proof? I don’t have the answer to this question. It is not as if Evan has been touched by a curative wand. He still does not eat enough to gain weight as his self-described ‘bony butt’ hurts when sitting on for any length of time. But his pain is in a self-managed state and he is as clear, focused and engaged with his life as he has been in months. To have Evan voluntarily walk out of the pharma-fog and spend quality time with us is priceless. He even came to the airport to pick up his sister, and then sat down at the dinner table with everyone. <br />
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And to end here would be a decent place to stop, but there has not been enough cynicism at the establishment, nor praise of the actions of those select few who understand the meaning of the words service and community. <br />
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First the praise for the staff of our local Community Home Health and Hospice who braved the 100+ F temps of Saturday to come and dig holes for trees, and paint rafters for the pergola; And there is adult scout extraordinaire, Blake Ball, his son Will and wife Denise who worked through the heat to get the frame work and foundation in place for the pergola (Italian word for un-decked roofing rafters built for shade and vine propagation, aka arbor attached to house); Alongside these amazing people we had more amazing people, Christie, Rich, Steve and Greg. Each person worked to best of their ability in oppressive conditions, it was awe inspiring and humbling to behold. And that’s before we get to the dancer, artist and cancer survivor ambassador – but that will be another post.<br />
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But the event to beat all others has revolved around oxygen: Supplemental for Evan, critical for life, previously prepositioned for ease of use and access; until we went to use it on the go. Evan learned about the tank, learned about the pressure guage, learned about the regulator and device attachment point, and how to open the tank with the tank key that had not been provided. 4-5 trips to the house, no less than 6 phone calls, and no one thought to check to see if we had the one device necessary to open the tank allowing oxygen to flow. Now since dad was a former paramedic he realized a pair of pliers can do in a pinch, but tank manufacturers and regulator manufacturers frown on using the wrong tool for the right job. So a Sunday night call was placed to the afterhours call center: Do not call to see if everything is okay! It is not, just send someone out with the tank key ASAP! This is not life and death, it is a fundamental customer service failure that can only be remedied by action; not hand wringing and empty apologies, although base groveling is looked upon with some degree of mercy upon error correction. <br />
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Monday morning: <br />
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Call 1: ”I see you didn’t need me to call, but just to get the tank key to you. Right well, so sorry, can’t understand how this happened, we’ll have someone out there today.”<br />
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20 min later Call 2: “Since you haven’t needed it till now, could I mail it to you?”<br />
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Unfortunately for the sake of decorum we are unable to relay the other side of Call 2, but it wasn’t pretty.<br />
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Thank you for your continued thoughts and prayers for Evan and our entire family, we cherish them and hold each of you close to our hearts. To check out the Evan’s Garden and its progress, news on the Music Concert, and other information, go to http://miracle2012.webs.com<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1724646900023102801.post-26928141474536101832012-06-23T04:06:00.001-07:002012-06-23T04:06:39.817-07:00Dear Diary - i can't breathe . . .Wednesday June 20, 2012 – Winter Solstice, I think<br />
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Today was not a good day. It could have been worse, although I am not sure how. Late in the afternoon the pain really started getting to me, which really sucked because I wasn’t doing anything but watching TV. First it was under my breastbone, then I thought I had a bladder infection and finally the hammer to beat all nails, my back started to kill.<br />
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So I took a shower to try and let my body reset itself, besides it would soon be time for my pain meds. But as I got out of the shower I suddenly realized I couldn’t breathe. No way to take a cough, no way to take a deep breath, the best I could do was pant like a dog. So with a towel over my shoulders, I collapse onto the bed on all fours and I must be breathing 100 times a minute, and I feel like dog s^&*! Pain still beating away, can’t catch my breath, and mom looks like she’s seen a ghost, but she goes and gets dad.<br />
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Dad’s not the brightest light bulb in the box, but he’s faithful like a Labrador Retriever, and he kneels beside me and asks the dumbest question, “So, how are you doing?” what is blind as well as stupid, I’m breathing like a racehorse after a mile and a half, I look like a scarecrow, I must be white like snow, and he’s asking how I’m doing. Too funny, if I wasn’t struggling to get my breath, I’d be ROFLMAO. My measured response, one word at a time between pants, “Something went wrong today” I then tell him about what happened and over time I start to breath more slowly.<br />
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So now my pain medications are being increased to three times a day, and my dad set up this oxygen machine. Now call me stupid, but isn’t there oxygen in the air, what the heck is this machine gonna do except push air down a long tube into these two hard prongs that are supposed to go in my nose. WTF, who designed this monstrosity of masochism. This is gonna work like a lead balloon. I want to say, “Dad are you F-ing Kidding me, this makes me feel like a prize pig with a ring through its nose, certainly not better” I don’t know if he can read minds, but he came up with a different technique, seems fairly bush league if not down right wrong, but those Puff the Magic Dragon nostril hooks are not going back in my nose. No sir!<br />
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By bedtime I am no longer panting, and I think I’ll sleep better if I can remember who I am and which elbow is supposed to sing the National Anthem before prayer time. Drugs are so double edged, but I’m too sleepy to discuss this anymore.<br />
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Thursday June 21, 2012<br />
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Morning meds come too early when I am not sure if I slept. I really wish people wouldn’t look at me, it’s just so annoying to be the center of someone else’s attention when clearly they have their own issues that they should be dealing with before me. As I drifted into that morning medication stupor, I wonder why more men don’t sing Happy Birthday in a falsetto voice with a blue tint.<br />
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So it half past noon and dad has the temerity to tell me that people are coming by the house today. Can’t he see I’m in no state for visitors, I have no pants on. Next thing I know, the smoke smelling oxygen machine has been replaced – nice! I sleep some more, then that good old Lab comes with those puppy dog eyes and asks if I want to come see the nurse or whether the nurse should come to me. Once again, sharp as a tack! Can he not see I couldn’t stand to save my life? What makes him think I’ll take the stairs, besides his rendition of Happy Birthday sucked. Pants on, and enters the nurse, possibly named Cratchett, she starts apologizing for taking my blood before she’s even put on the tourniquet. I’m not sure which Cracker Jack box held her license, but with the deft touch of a butcher with a bandsaw she managed to get the needle in and get the blood out. Did she not understand I didn’t want her apologies for taking the labs, just do your job, do it quickly, efficiently and then GET OUT OF MY SPACE, AAARRRRGGGGGHHHHHH!!!<br />
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Old Yella went out for a run, and came back with more instruments of the inquisition, not just prongs up the nose, but a full mask of suffocation. Sweet, I can go out screaming into the baffling effects of a soft plastic mask, If I could actually get a decent breath. Oh yeah forgot to mention, gained some weight this week, and temp was okay. Pulse Ox whatever that means was in the low 90’s and my pulse rate was above 120; but I wasn’t gasping for air. Too bad I’m not in the army, ‘cause this sounds like a time for a good Huahh! Or some such other warcry of victory.<br />
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I have to say that the oxygen does seem to ease my stress when certain individuals, specifically the devil spawn that is ‘my’ dog. Tonight I shall sleep soundly to the hum of crickets warbling Aida in the Key of G, at least that’s what I think the oxygen machine sounds like. <br />
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Friday June 22, 2012<br />
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Not sure what happened today, but it just kind of went by in a sedated shallow breathing haze. They only timed I felt fully in the present was when ‘my’ dog, spawn of Satan, Pixel, Hound of the Coleman’s entered my space one too many times. I lost it, couldn’t breathe again, just panting through tears of anger and frustration, no position of comfort, just hate and hurt, haze and hack. The Lab got angry and is yelling to get my attention, “Put on the oxygen” he yells, “It’ll make you feel better”. “No it won’t I yell back defiantly”, until out of breath I relent as he and my mom leave me to rest in the dark.<br />
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I love my mom so much it hurts, and I hate pushing her away, but I can’t stand her looking at me. I can’t stand looking at myself anyway, bad enough I’m a teenager, but I look like some B movie zombie or a prisoner from a genocide camp. She just wants to help me, I know this, but it just hurts so much to see the pain in her eyes as she reaches out to touch me and try to bring me a comfort that I am not prepared to receive because my defenses are so wound up.<br />
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Sleep is easier and easier, and sometimes I fight between wanting to fall into fitful pharmaceutical sleep and a fear that I won’t wake up at all. Weird, huh! Good Night Diary – See you tomorrow? <br />
<br />Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-1724646900023102801.post-51693421005673840432012-06-15T19:56:00.000-07:002012-06-15T19:56:08.049-07:00Don’t Cry for Me Argentina!<br />
On July 26, 1952, Eva Peron succumbed to cancer after a long battle of surgeries and experimental chemotherapies. She was only 33 years old, but had become a political icon and champion of the underprivileged. After her death, the country of Argentina came to a standstill, and so powerful was the imagery and vision she had brought to her people, that for almost 20 years the military dictatorship (that had arisen in the vacuum she left at her death) banned any private pictures be kept by any any Argentine citizen, and her body was shipped to Milan, Italy so as not to be a rallying point for the impoverished masses.<br />
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Andrew Lloyd Webber and Tim Rice reintroduced the pop culture star status to the young champion of her country in the musical Evita. 60 years later a 13 year old is about to succumb to cancer, and we know that his passing will bring tears, and sorrow and heartache that will appear unfixable. But this is where we turn to what both Eva and Evan desire. Don’t Cry. Know that you are loved just as we know you love us. Life is a series of dichotomous choices: Love – Hate, Anger – Remorse, Happiness – Sadness, and of course Life –Death. Not often considered are the opposites of Fear – Faith, Hope-Despair, and Joy –Depression. <br />
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Our approach to Evan’s life has been to seize hold of the former and leave the latter to later. As we look at this summer there is definitely a nervous anticipation of a homeowner approaching the terminal payment of a balloon note. But we cannot know the timing of final breaths anymore than we could have predicted that you would be reading this note. But we know when the first tears were shed, and we know when the first laughs were heard; what we ask of you is that you try not to hold onto the tears, but revel in the smiles and the laughter of life. You will never know when they will end so long as you seek to live your life to the fullest.<br />
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We have heard the questions asking about Evan and how he is handling this situation. We have heard the questions about how we are handling this situation. But now we must ask you how you are handling this situation? When you see us, do you avoid eye contact or is eye contact tinged with pity? Are we worthy of a smile and memories of joy, or will you merely see an inevitable end of life as a tear rolls down your cheek? <br />
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In the past 2 weeks we have felt that the hospice model we have been dealing with is a cross between the Key Stone Cops and the inevitable run around of a 3rd Party Warranty. It has been a tragicomedy of Shakespearean proportions. As of this afternoon, we will have seen 8 people in 7 different visits of no less than 2 hours each. Our two highest priorities have been to ensure blood draws at home so that energy for out of home activities can be reserved for more fun things than a 3 hour commute to UNC; and to ensure that there is a counselor available for Evan’s 87 yr old Grandfather, Rev. Pat, who has lived with us for almost a decade. <br />
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It seems amazing that so far we have answered the same questions on the same distressing subjects so many times that it seems there is just a fundamental attempt to desensitize us to the impending death of our son by repetition of the obvious. Best question every single time, “So how are you dealing with this?” It appears as if there is no communication between staff, no universal information update, or that the little computers they carry around have no way of sharing information with each other. This is before we get to the question of whether they have actually read up on what Evan/we have been dealing with for 4+ years. I suppose the ongoing referral to read this blog is too much to fathom. <br />
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Morgan, our amazingly gifted and insightful daughter, has pointed out that the cool, calm and composed parents are not what anyone outside our family expects to find. Those people who have to visit us for professional purposes are often so distressed with our impending loss they are rendered discombobulated, at sixes and sevens. So much so that our last visitor fell back on classic religious platitudes, and as a result she was almost shown the door. She was saved by the return of a mischievous beagle who so rattled her cage that she left of her own account. (18 hours earlier, Snoopy had jumped our perimeter fence and chased after a deer. He is 13, the fence is 4 ft high. It was a phenomenal event only topped by his mournful baying at the stranger saying, “God only gives you what you can handle”. We are guessing that the new pair of underwear needed by our latest visitor indicated that God may have exceeded her capacity at that moment.)<br />
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Note Bene: Every person who comes to see us/Evan has only the best of intentions for all of us. Evan is not in any pain beyond what he has tolerated day in and day out for the past 4 years. And the provision of human foils and foibles for the verbal rantings of the writer is truly a gift from God and provide ample evidence that life must be lived in the moment; and not with bated breath for the inevitable but unknowable cataclysms that litter life like a mine field. <br />
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Next point of aggravation/humor: The impending need for oxygen therapy. Many people who enter hospice, that is the period of time in which they know they will die, require some level of supplemental oxygen so as to best function. Many people would include the aged or adult infirm; Many people would not include vibrant teenagers who desire to live life to its fullest in a mad thumb your nose at the devil sort of way. So when a trend of declining Oxygen saturation was noted, a simple inquiry into the simplicity of establishing oxygen therapy was met with a standing order for oxygen for hospice patients. Great, wonderful, no hassle, just like that it would arrive the next day. <br />
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Fast forward – Lively active teenager (Cancer patient or not, given enough anti-depressants, McDonald’s Chicken Nuggets, and Dr. Pepper you’d be lively too) needs to get out of the house, has trips to Dallas and Bethesda planned, with a week at Victory Junction Cancer Camp (Play Nascar, boating, fishing, archery, horseback riding, etc – No one talks cancer – Camp is fully Medical staffed) And certain questions come up. How do you take Oxygen to Dallas? How will Evan get around camp? Will there be enough oxygen for a car ride to Bethesda?<br />
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So the oxygen arrives in the form of an oxygen concentrator. The small unit weighs 35 lbs, plugs into the house electric, and is about as portable as an anvil. It is the ultimate in house arrest gear for the dying. Yes sir, you can live on all the oxygen we can get you within 50 feet of this little ball and chain, but that is the extent of the fullness and quality of the life you have left remaining. So we find out about a portable battery operated 3lb unit that will go anywhere including airplanes. But the oxygen company is not allowed to deliver those units to hospice patients – too expensive, doesn’t fit the patient model, etc. Yeah there’s gonna be a battle. But you can already guess who is gonna win that one.<br />
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And now we arrive at the ultimate irony of the last 7 days. When we first came to North Carolina we sought out a gerontologist for Rev. Pat so that as he aged he would have the benefit of knowing his doctor as he approached the end of his life. And he found an amazing doctor who he will sit and chat with about the most fascinating subjects. And you’ll never guess who the medical director is for Evan’s hospice provider?<br />
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The answer was here all the time<br />
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I love you and hope you love me<br />
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Don't cry for me Argentina<br />
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Don't cry for me Argentina<br />
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The truth is I never left you<br />
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All through my wild days<br />
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My mad existence<br />
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I kept my promise<br />
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Don't keep your distance<br />
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Have I said too much?<br />
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There's nothing more I can think of to say to you<br />
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But all you have to do is look at me to know that<br />
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Every word is true!<br />
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Do not cry for us, do not cry for Evan, do not cry for yourself. Cry for love, cry for happiness, cry for joy. But above all else Live your life today and share the joy of the love in your heart with all who you meet today.<br />
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PS. Regarding the humorous paragraphs above taken at the expense of a number of hospice workers. It is only fair to publish the retractions and errors. It is essential to remain humble and the writer put pen to paper too quickly, but for the sake of literary license and continuity they remained in the body, but will hereby be remedied. First, the chaplain who came today to speak with Rev. Pat was ex-Army and was the model of both efficiency and compassion as he not only took the time but also the interest and initiative in the need for a portable oxygen concentrator. Second, the ‘Dog’ lady went back to the office and took up Evan’s cause to maintain his independence and mobility arguing for portable oxygen.<br />
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That would normally end the situation, but it turns out they sent portable tanks that cannot be taken on airplanes. Unfortunately, the column inch maximum has been reached otherwise the proposed alternatives would cause you to weep from the length, the frustration, the humor and the sadness of the resulting conversations. Perhaps next time. <br />
<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1724646900023102801.post-82679748085397733962012-06-11T16:21:00.001-07:002012-06-11T16:21:49.564-07:00D. N. R.<br />
Line of the Day: “So I gather you’re not happy about entering hospice”<br />
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This was the response by a friend to the angst that had been share regarding the nature of the hospice economic model as it related to Evan’s situation. <br />
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This is one of the hardest blog posting that has ever been written. . . .ever. Sometime earlier this afternoon, the paperwork was signed entering Evan into the care of a local hospice organization. The papers were almost an inch thick stack of medico-legal mumbo jumbo, the gist – please die quickly, with the least amount of fuss, and we’ll be there to make it as painless as possible while maximizing the profit from your dying. <br />
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WARNING – WARNING – WARNING. Grief has been simplified as a five stage model that is neither regular, balanced, ordered nor sequential. Along the way the grieving person will experience: anger, depression, bargaining, acceptance, and denial. At the juncture of the writing of this post, the writer is experiencing ANGER at the DENIAL of compassionate service by hospice providers due to an economic DEPRESSION and a failed BARGAINING process on the behalf of those they purport to assist. And Evan is left to ACCEPT the realities of a red tape jungle that his parents seek to hack a path through to daylight. Clearly this is not the classic Kubler-Ross model, but when has this situation ever been classic?<br />
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But let’s push the rewind button and go back 4 weeks to the last set of scans. It was determined at editorial review that the full extent of the results of those scans would be revealed in a more deliberate manner as we all came to terms with the realities of what we saw in the images. <br />
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The images revealed not only a larger main tumor that was encroaching on Evan’s spinal cord but multiple metastatic tumors in multiple lymph nodes in and throughout his body and encircling his neck, additionally there were 30+ rapidly growing tumors in all fields of his lungs and no less than 5+ metastic tumors in his skeleton. In the 10 weeks since Evan had stopped taking the braking chemotherapy, the disease had gone into overdrive. <br />
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The images painted a picture of death. The choices were stark, brutal and devastating: Treat the disease to save spinal cord function and reduce pain vs. seeking out some other untried/untested guess; followed by - Should Evan die while suffocating from extensive tumor growth in his lungs vs. dying from starvation?<br />
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And all these decisions had to be made against a backdrop of clinical depression and despair on Evan’s part. Being the brightest light bulb in the box has not necessarily been to his advantage as he has reached two conclusions: He will live the remainder of his life in some degree of pain that has been his constant companion for the past 4+ years; and that he no longer had any confidence in any proposed treatment after so many failed attempts by the medical establishment. All he knew/knows is that his parents love him, and that he doesn’t want to hurt them, nor be seen as less than worthy of that love by quitting. He just wants to be a good boy and live a normal life.<br />
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So going back to the original line of this post, no we were not happy about entering hospice, nor do we know anyone who is happy about hospice; excepting those who have given up hope on life and seek the warm comfort of a dark enveloping end to their misery and pain. Please see Dr. Jack Kevorkian.<br />
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There is as hard, cold reality that is shied away from by all people, but especially those of us fortunate enough to have lived our lives entirely in the first world: Life ends in death. For all the religious and spiritual processes and rituals, not one of them can alter the ultimate physiological reality that our earthly lives are finite.<br />
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As Evan’s caregiver’s we needed to retool, reprioritize and rethink our roles, purposes and plans. We do not yet know the excruciation of parents surviving their child’s death, but the death of our dreams has been desperately painful. We had to shift into total support and service mode. A 13 year old young man is not just a child to be told what to do; they are a young adult with major psychological support needs before one throws the cold, wet blanket of impending death over their shoulders. Our call is to be there for him to meet every need he identifies.<br />
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Evan does not acknowledge the grave nature of his reality, but he knows. Evan does not talk about disease or dying, he often just doesn’t talk. Evan does not revel in his increasingly gaunt figure as he grows taller while continuing to lose weight, he shies away from seeing those who knew him before or wears disguising baggy clothes and sweats. His smile when it comes will still light up a room, but there is a painful response from that room as they look past the grinning teeth and see the hollowing cheeks and the taught cords of his neck.<br />
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And as people grasp the full nature of what is happening, the next inevitable question arises: How are you (the caregiver/parent) doing? Somewhere in recesses of your mind I would ask you to conjure up the elements of Greek mythology, specifically related to death if only because the imagery surrounding the transition between life and death is useful for relating the changing role of Evan’s parents from champions of the fight for his cure to becoming the most supportive and reliable people in his journey toward death. <br />
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A brief primer: Hades, a devilish God thrown out of Olympus by Zeus is doomed to rule the Underworld and its inhabitants, the dead. To reach the Underworld, the dead are transported across the river Styx (River of Hate) by a boatman, Charon (typical imagery presents this character as the Grim Reaper) who is to be paid 2 coins otherwise the dead were destined to walk the world in hate as ghosts never achieving any semblance of peace in the life to come.<br />
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The concept of Rest in Peace derives its origin from such mythology, and as a general rule humanity seeks to grant the dead the most decent passing from the land of the living to that of the dead as seen in our laws, customs and mores surrounding the sanctity of the dead human body. And so people, family, and friends will do all they can to ensure that the boatman is paid his two coins so that our loved ones are granted safe passage over the River Styx; what we are not prepared for, what we cannot imagine, what we most assuredly run from is having to take on the role of the boatman. But that is now our role. <br />
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As Evan’s parents we were helped in our transition to these roles with the capable caring and comforting words of wisdom of all the members of Evan’s treatment team at NIH. It was no wonder that Evan prefers to be treated there than anywhere else, even in death there was a continuing element of hope. And so we come full circle to the title of this post. DNR does not stand for Do Not Resuscitate as much as it stands for Death – No Regrets. <br />
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<br />Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1724646900023102801.post-20193923229490193452012-06-04T06:35:00.000-07:002012-06-04T06:35:34.378-07:00Cancer Survivors<div class="separator" style="clear: both; text-align: center;">
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The first Sunday in June has been declared National Cancer Survivor Day. For 25 years this day has been set as a celebration of life. Who declared it so? We don’t know. Why was it declared so? We don’t know. Does it really matter? H E double hockey sticks, yes. <br />
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And for a small digression in the celebration of life: the origin of H E double hockey sticks. At some point in the past the extended distaff side of Evan’s house has felt that the use of the term ‘Hell” in actually naming the place of eternal resting place of the damned souls of this world was tantamount to high blasphemy and use of the actual word could potentially condemn the user to permanent reservation to this warmer retirement locale. In deference to the concept that a vulgar mouth is an uneducated mouth and given the propensity of the writer of these posts to avoid the difficult subjects, it has been deemed necessary by the editorial board to both use H E double hockey sticks and to then explain what that means and how it came into use.<br />
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All of the above is a simple summation of the fact that Evan is very much alive today, that we are all cancer survivors of some measure, and that we should seize and celebrate life to the fullest at every opportunity. Each day thousands of people will succumb to cancer, but for today as you read this you are, and we are, surviving. Surviving not just by living, but by living this day to the fullest of our ability as we seek to lift the burdens of those around us.<br />
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One post three years ago detailed that each span of time had the opportunity to render good situations, bad circumstances, and outright ugly results. For the sake of repetition, it was decided not to reuse the title, but the last week in Evan’s life is best framed in those simple terms. For any possible excess angst related to the ‘bad’ section to be discussed, we advise the audience to look away, cover your ears or enjoy the juicy descriptions of some of the relative stupidity that confronts Evan on a near daily basis. Please remember that ignorance can be educated, but stupid is a lifelong condition.<br />
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For the good: Evan has had a couple of his best days in the past 2-3 months in the last week. He has moved from one small meal a day to 2 plus snacks, as a result his weight may now stabilize around 88 lbs. He has voluntarily gone foraging for food, and ventured from his self-imposed seclusion to active engagement of people to facilitate getting things that he wants. Most importantly from the caregiver standpoint is that he has re-entertained the concept that he was in fact borne for nine months by his mother and not hatched under a rock or via incubator. This is equivalent of nothing short of a breakthrough in the Israeli-Palestinian conflict, and given the general nature of the mother-son teenage relationship this breakthrough in such short time is being considered by the Nobel Academy committee for both World Peace and Medicine.<br />
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The week was capped by a successful hunting trip in the local Lego store with the pelts of 5 new models being prepared by the taxidermist for display. The trip was made especially memorable by the presence of Amy Arundale, a family friend who just happened to be in DC for the day and stopped by with hugs and kisses sneaked past undeclared at the NIH border patrol and customs agency.<br />
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Claims for the source of these improvements might have come from the end of radiation therapy, new dosing of anti-depressant, better parenting, tacos 4 nights out of 5, dumb luck or divine intervention. But since Evan isn’t in a research study anymore and is just in the battle for his life, no one cares, most especially him. Sometimes life is just better, and you are glad for that just because it is.<br />
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And now for the bad, knowing that you have been forewarned and forehumored so that you do not pick up the device you are reading this on and throwing it the nearest wall/bus/asphalt surface. It should be a foregone conclusion that when a family is faced with preparing for end of life decisions that everyone would seek to be as helpful and supportive as possible. And for the most part they are; however, for your amusement let this be a first forum on some of the inanities that we have faced while approaching hospice through our soon to be ‘prior’ North Carolina medical gatekeepers.<br />
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Hospice is intended to provide patients and their families support at the greatest time of need as a potential end of life event becomes a present reality. However, some people believe that this is Jack Kevorkian territory in that if you ask for hospice care you should want to die and as a result should if not doing everything to take your own life, you surely shouldn’t be doing anything to prevent it happening as soon as possible. It has been shared that because Evan will continue to take chemotherapy drug to facilitate the highest quality of life, and because this chemo (like all the others) might actually save his life, he is not eligible for hospice care. In the parlance of the day, WTF?<br />
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So as we interpret this interpretation of the rules, if you are seeking hospice care and you have a headache, use of aspirin would eliminate a person from consideration because it might stop a potential heart attack. There is a very popular tweenager game called ‘Would You Rather . . .?’ where two diametrically opposed situations are presented as extremes and you are asked to consider which you would prefer to do. One such question: Would you rather eat an 1/8th of an acre of grass or drink a 3 ft by 3 ft by 3ft puddle of rain water? Our question from the hospice: Would you rather Evan face the consequences of 30+ tumors in his lungs or . . . ? Does it really matter if you deny the person the dignity to die in peace and instead force them to suffer as they go? Arrrrggggghhhhh!!!!<br />
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Assuming you still have a functioning e-reader at this moment, we shall arrive at ugly, or the funny, or the downright – are you kidding me? Late Friday afternoon a series of major thunderstorms ravaged the Washington DC area, and NIH was not unaffected. The Children’s Inn which sits on this approximately mile square facility has been Evan’s home away from home for 7 of the last 10 weeks. During this time the Inn has been undergoing a series of improvements and upgrades including the installation of new carpet and Google TV in each of the resident’s rooms. Additionally, the exterior playground is being prepared for a major upgrade this summer.<br />
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The playground design team, KABOOM!, only does one playground a year because of the scope and intensity of the design requirements for each project they undertake. At The Children’s Inn the design process had to accommodate infants to adults in a manner that anyone regardless of circumstance might find some measure of play, peace and life enjoyment when they are in the playground. This is no small order for the healthiest of populations. On Wednesday night the design team came to dinner and in an interactive presentation revealed what was going to happen on the back hill behind the Inn. There were balloons and bandanas, markers, paper and ideas were shared. Many of the kids wanted to have some form of water features in the playground, but due to design/health limitations none were going to be added, until . . . <br />
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In an effort to avoid flooding from the hill behind the Inn, the playground was being updated to among other things include a large storm drain for runoff that had plagued the Inn in the past. As terrain modifying construction had already begun, the storm drain in place, there was a desire to reduce the silt going into the drain, so it was covered with a fine mesh, while the rest of the hill was covered with plastic to also reduce the runoff. This had the effect of creating a pool outside the back windows of the main room of the Inn. As the rains came down, and it did come down in torrents, the rainwater runoff created a 4 ft pool of rain water.<br />
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The NIH Fire Department came and pumped out the pool, the maintenance man went knee deep into the remaining water and uncovered the storm drain, which when not covered, worked quite well. And the residents of the Inn had quite the family night watching an emergency unfold before their eyes as they gazed on from the balcony overlooking the great room flood and stream of 2012 at The Children’s Inn.<br />
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What does all this mean? It means that so long as you can see life as it is lived, you can celebrate today. There is an adage that many goalkeepers and weekend warriors ascribe to, “The pain lets you know that you are alive” but if all you have ever known or all you have come to know is pain, you never get to know you are alive until you smile until your heart is warm or laugh until tears run down your face. Yesterday we lived, so today we are cancer survivors. How about you? <br />
<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1724646900023102801.post-23895664883508229882012-05-24T07:48:00.000-07:002012-05-24T07:48:32.917-07:00Pepperoni Pizza PleaseYesterday afternoon a group of four people met to discuss Evan, his disease and decide upon a course of action. It was 90 minutes of discussing Evan's health, mental status, medications, past results, and location, location, location. While Evan has been a valued member of his own treatment team, this time he sent a delegate beside his parents to represent his views. Evan's war right now is being fought on 2 fronts: Depression and Pain; and while he is making good progress on both he is still in a dark place. What follows is a summation of that discussion.<br />
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Love, Hope, Peace and Joy all bound together within the complex web of Faith. To a certain extent we are able to wrap our mental fingers around the intangible concepts of: Love – commitment to placing a higher value on the life of another than on our own; Peace – a place of quiet confidence from where we are able to face the tough situations and decisions while being comforted that whatever the choice the outcome will be acceptable; Joy – to hold a position of satisfaction of purposes fulfilled regardless of or in spite of any mental or physical status; Faith – being confident in what we hope for and assurance about what we do not see. <br />
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Hope is much more difficult to frame. We know how it feels when it’s present, and we know what it looks when it isn’t. But if we presume that the presence of Hope is yellow and warm, then its absence is cold and dark. When Hope is realized, it is no longer Hope, it is Joy and Peace and Love, and our Faith is kindled by its realization; but when Hope is absent or worse robbed from us, the depths of cold and despair know only one true end – death.<br />
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And so it is easy to see that as one holds Hope in a Faith, as the origin of that Faith is vindicated by both the presence of Hope and the results of its maturing into Love, Peace and Joy realized. If one holds fast to Science above all things, then one might wait an awfully long time for the meaning of life to be calculated through an equation to be 42. The scientific process is relentlessly slow, a painstakingly boring in its incremental march toward universal knowledge. In Evan’s case there remain options, but the no remaining options have a scientific basis for success, it has come down to an equation of the gut instinct of the Doctor most familiar with the disease process that afflicts Evan.<br />
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For those who look to the Faith of their fathers for a medical intersession of a miracle there has been an apparent lack of miraculous response from heaven. No sudden healing, no command to get up and walk, no shrinking of tumors, only a terrible feeling of hopelessness. We have seen it first hand in the overwhelming of Evan’s ability to remain resilient in the face of a disease that continues to rob him of nutrition, oxygen , and the very will to live. Until . . .<br />
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Until the medical community sets pretense and data capture aside and looks to holistically treat out of compassion born of humility. Until cousins sit and chat about things that interest Evan, not curious to find out what interesting things have been happening to Evan. Until a surrogate big brother plays Lego for the sake of playing. Until an Uncle just sits and chills expecting nothing but that time should be allowed to pass. Until Evan read cards from 25 states wishing him courage, good tidings, love and encouragement – “It’s good to read such nice things, it makes me happy”, says Evan.<br />
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Hope is not found in medicine and science, but medicine and science can be parts of Hope. Hope is found in not accepting death as a forgone conclusion, but living life as it is today. Hope is not found in past successes or failures, but in realizing that the journey made smoother by learning is a path toward Hope. Hope is not found in a new drug, a current therapy or a future treatment; but a new drug working in concert with present and past treatments brought together in a novel approach does offer hope.<br />
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But the truest Hope is found in the combined hearts of all who have known Evan or have come to know him by these posts; it is in your hearts that you hold out all the Love, Joy, Peace and Faith toward him in the Hope that he will get well. As this process has stripped away reliance upon science and the crutches of formalized religion; what has been left is the art of medicine in a seemingly arcane method of weaving knowledge with instinct woven into a tapestry of love and compassion that has been held together with the threads of your thoughts and prayers. <br />
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Time has never been on Evan’s side, and it seems that this adage remains true. But we would ask you to consider this reality: If time marches relentlessly toward a future, a future Evan wishes to embrace; should we not engage the time we have with the living of life rather than the avoidance of death? Do we Hope for a future without death, or do we Hope to live Life to the fullest? Does Hope even care about such large and ponderous existential ideas; or is it simply concerned with a desire for pepperoni pizza for dinner tonight?<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1724646900023102801.post-49410618172316956202012-05-10T16:21:00.000-07:002012-05-10T16:21:26.216-07:00A Picture is Worth a 1000 TouchesIt would be safe to say that there has been resistance to writing this post for some time. But the images that were taken yesterday were reviewed today. Evan’s weight loss has not been caused by nausea or lost appetite, but by the robbery of all nutrition and energy by the tumors in his body. Any Registered Dietician will tell you that a 4000 calorie deficit/day while exercising to lose weight is unhealthy, but to lose a pound a day while doing nothing points to a much bigger problem. That problem was painted in stark terms and images today. Not only had the main tumors grown together and bigger, but Evan’s lungs lit up like the neighbor’s spruce fir decorated for Christmas. And to add insult to injury, the main mass in his back has started to encroach on his spinal cord in a speed and manner that is of primary consideration.<br />
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The nightmare doesn’t end, hope is not restored, stark terror runs coursing through mind and body when the plan of action is revealed. Stop all chemotherapy, start radiation oncology to attack the tumor invading his spine, seek to restore balance and quality to Evan’s life by choosing the battle to be fought while suing for peace with the Grim Reaper. There are other possible treatments, but the spinal cord must be saved first and that will give time for all the distant metastases to continue on their destructive paths. Time is definitely not on our side to win the war.<br />
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Evan has fought a long brutal war of attrition with his invisible foe. He has been a valiant hero and a beacon of courage and strength to all who have met him; and at some basic level he must be given the dignity of ending his war on his terms, and that is what we will struggle with next. With all the tough love recently over eating and drinking enough, it would be fair to say that the paces Evan has taken of recent have been not to let his family down , afraid that we will not love him as much or think him a failure. Nothing could be further from the truth, but teenagers can be tricky to deal with. All of the above came together in 10 tortuous minutes while Evan was talking with his psychologist. <br />
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Therapeutic touch is an accepted reality amongst many medical practitioners; however the art form is used by a seldom few who practice day after day to get it right so to convey support and not pity, calm and peace rather than stress. There is in the midst of these unsolicited touches an appreciation of intent that is rudely whipped to the side by the revulsion and disgust of the patronization of the ordeal. There is a profound claustrophobia that closes in like an English fog in winter that occurs when such difficult information is shared. Support by an unfamiliar touch of an unknown pitying person is rejected in favor of the need for space, air and a few cleansing breaths.<br />
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On the way to our next and now emergent appointment the chance to breathe and get bearings is muted by yet another round of questions by a new set of staffers in a new discipline. Yes, Evan was immediately whisked to Radiation Oncology where after bureaucratic badgering, he was fitted for radiation treatment, rescanned and marked for treatment. Tomorrow begins a new treatment, hope is held in an experimental T-Cell vaccine that would be cultured from Evan’s tissue. That hope may be fleeting if the vaccine team does not feel it can be done successfully, the FDA does not approve, or he runs out of time.<br />
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If you would like to mail Evan a note of encouragement, <br />
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Evan Coleman<br />
1032 Newburgh Cir.<br />
Raleigh, NC 27603<br />
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<br />Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1724646900023102801.post-72705194262750540732012-05-09T20:03:00.002-07:002012-05-09T20:04:20.095-07:00It's Cold OutsideIt’s cold outside. It’s raining outside. And we’re hurting inside. We’re fractured and cracked, broken and beaten, and every step is like walking on the glass that was our armor. A beam of light is flashed outside. While a flash of light beams inside us, on the pain that seems to keep us dry. There’s a game on TV, two guys care but cannot speak, But who really cares about the Heat. This is NIH.<br />
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Right now, the writer of this post has been banished from the presence of the main protagonist because the sound of eating was too much to bear. 24 hours ago Evan was settling in to The Children’s Inn at NIH, there had been a 6 hour drive preceded by 6 anxious hours. And it seems that anxiety is the only constant companion of anyone associated with Evan. Gone is the joy, the winsome smile, the brilliantly timed one liners; and in their place there is a hollow person going through the paces as he is told to take them.<br />
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Disjointed, broken free verse seems so appropriate for sharing this situation. Please pardon the lack of cohesion. Evan spends his resting time in a modified downward facing dog pose using his head and knees as fulcrums while arching at his waist, face down in his pillow of choice, butt up in the air in some effort to moon and disrespect anyone who would criticize this position of comfort. When action is required it is balanced between aimless pacing, scalding showers or dips into bath water that you could cook carrots in. We are in the best place physically for being in the worst place physically; but you could never tell from the oppressive weight of despair that seems to hang over Evan’s head that is broken by sunshine smiles when engaged by those loving souls who meet him where he is and not where they want him to be.<br />
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Evan’s current weight is down to 92 lbs, and weight loss seems to be slowing although this may just reflect that there is little left to lose without major consequence. The scans of today will be reviewed with us tomorrow morning amidst other scans, tests and evaluations. We don’t know what we’ll hear; all we have to go on is our own observations and feelings: Evan is in less pain but has less energy and more suffering from nausea and anxiety. The visible masses have blended back into one large mass that looks like a split Polish sausage under a blanket. And overall Evan’s spirits have hit a brick wall which has a decided wet blanket effect on those closest to him.<br />
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Miracle 2012 seems so far away, plans are being made, schedules being assembled and calendars are forthcoming; but landscaping, yard work, art, auctions and music seem so trite at this moment. It is difficult to celebrate life when you have been looking at death for so long. We need some better news tomorrow but the cold icy grip of fear seems to have an unrelenting hold upon our hearts. Evan needs to hear that there is light at the end of the tunnel; whether that light be heaven or the future he does not care he is just tired of fighting. Parents need to hear glimmers of hope that can be spun into a woven tale of perseverance for their son; because the blanket of yesterday is tattered, torn and trampled.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1724646900023102801.post-71811000790122310622012-04-22T14:49:00.001-07:002012-04-22T14:49:56.425-07:00And the other shoe dropped!If the number of pills you take to maintain a happy life is directly related to one’s age then Evan is. . . <br />
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<tr><td class="tr-caption" style="text-align: center;">All the tubes for 1 blood draw</td></tr>
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If there is no news, it must mean there is no bad news . . .<br />
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For almost a year there has been a status quo that was suddenly interrupted . . . <br />
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We hope you have not forgotten Evan, as we were trying to forget that we needed you . . . <br />
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These are the false starts of a modern day Bartleby. I’d rather not write this. I’d rather Evan was not ill. I’d rather there was no cancer. I’d rather not . . . Until at the end I am found dead in some thought debtors prison of the mind. Or perhaps I wish to be so inundated with proletariat marketing and fluff I might shrink into oblivion with the masses than try to stand up against the tidal wave of angst ala Winston Smith.<br />
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And in a nutshell, there you have it. All the angst, fear and frustrations of 5 years came crashing down upon our family 7 weeks ago. Since then there has been such an overwhelming amount of work, management and care that we have hardly time to eat, sleep or even breathe. <br />
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For the new reader here is a synopsis if you are not so inclined as to read the 57 previous posts in this blog: Evan, now 13 yrs. old, was born with a giant birthmark, initially thought to be precancerous, the subsequent testing initiated a cancerous process. 5 years ago a cosmetic surgery to remove a mass on the left side of his back resulted in 1 of 10 biopsy samples to be labeled melanoma. Since then there has been a roller coaster ride of travels, doctors, surgeries and chemotherapies. Those efforts had resulted in a tenuous status quo of minimal clinical treatments accompanied with monitoring scans to evaluate disease progression. On the social-educational side of Evan’s life, he had begun home schooling about 18 months ago to avoid any unnecessary or invasive inquiries by classmates into Evan’s ongoing situation and status. For the past 4 and half years, it seems the only constant companion in Evan’s life has been pain. Pain or discomfort, always present, has moved from place to place in a twisted effort to keep him on his toes.<br />
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<tr><td class="tr-caption" style="text-align: center;">Flight gear brings flight tales</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">On the very loud flight line.</td></tr>
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At some point in the future, things will once again slow down and a more thorough retrospective review of events in the last seven weeks will occur. For now it shall be a simple timeline of events, comments, actions and travel: March 2nd – 90 day status scans, March 5th – poor scan report, March 6th – UNC treatment center declares they have no further cutting edge treatments and can offer 1970’s era chemo (see poison in dictionary) or palliative care stating, “We are out of options, this will kill him”, but you can always re-inquire at NIH (National Institute of Health, National Cancer Institute, just outside Washington DC). March 7th – Evan spends morning touring Seymour Johnson Air Force Base and getting guided tour of 333rd Squadron in the afternoon Dad reconnects with Dr. at NIH and a plan is initiated for Evan to be screened for new medicine and then to begin treatment by end of March. March 27th – Arrive at NIH, March 28-29th - 10 hour days of testing (MRI, CT, PET/CT, ECHO, EKG, 24Hr UA, etc.), March 30th – First infusion of Ipilimumab (Trade name Yervoy, takes the brakes off T-Cells in the immune system thereby releasing the body’s own defenses to attack cancer cells), March 31st to April 6th – stay at NIH for monitoring, April 6th – home, April 8th – Easter, April 19th – travel to NIH for 2nd dose, April 20th – home for 3 weeks before next 10 day stay at NIH arriving on May 8th. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3VD-7kVi1GeZocQhucdXPm60lEYjNZHxVtqxXtwfEdSlFNHmxcRRij_kAFCbCDNzNUILpymxdEVNx4KUyYH4IqQzU35wtgEuSOrgPXa4AW-gOnj04AAL_hD_ewCwJA-SrWA3zmxeWXBw/s1600/2012-04-01+12.51.45.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" qda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3VD-7kVi1GeZocQhucdXPm60lEYjNZHxVtqxXtwfEdSlFNHmxcRRij_kAFCbCDNzNUILpymxdEVNx4KUyYH4IqQzU35wtgEuSOrgPXa4AW-gOnj04AAL_hD_ewCwJA-SrWA3zmxeWXBw/s200/2012-04-01+12.51.45.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying to use down time wisely</td></tr>
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A recent Article in the New Yorker entitled “The T-Cell Army: Can the body’s immune response help treat cancer?” captures the essence of Evan’s new treatment, and an abstract of the article can be read here: http://www.newyorker.com/reporting/2012/04/23/120423fa_fact_groopman. A quick shout of thanks to Evan’s Granddad, RevPat@e-colemans.com, for finding this and bringing it to our attention.</div>
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<tr><td class="tr-caption" style="text-align: center;">Pixel</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Amp & Volt</td></tr>
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So with that is the synopsis of the last seven weeks, you might imagine that Evan’s mindset has been pushed off kilter, and you would be right. For that matter, our entire household has been turned on its head and in an effort to balance the outside chaos we have increased the internal turmoil by adding more pets. Because nothing says, “I’m looking on the bright side of life” like Dwarf Hamsters and a Dutch Shepherd.<br />
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Evan has a difficult time with his appetite and has been slowly losing weight over the past 6 months, however in the past eight weeks his weight has dropped 15 pounds. He is in a battle of demonstrating his teenage mindset of controlling the one thing in his grasp (what he eats) against the information that he must eat a certain number of calories as part of his treatment against a constant feeling of bloating against stomach pain that is related to stress against medicines that both slow up his gut and those that speed it up.<br />
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Emotionally, Evan began talking to Justin Yopp, PhD. at UNC over 6 months ago. They have developed a really good rapport so that Evan has an outlet beyond the four walls of home and with someone he can trust. The positive changes have been welcome especially over the past 7 weeks, and we will continue weekly visits for the foreseeable future.<br />
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Mentally we are all exhausted. 5 years ago it was written that this would be a marathon and not a sprint; and as we pass the 20th mile the going is slow, difficult and frankly painful. None of us has ever had to work as hard as we are right now and we would be lying to say that we do not suffer from poor eating and sleeping habits and being generally over-extended; but who else can do what we need to do as a family, as patient, as care givers? <br />
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Evan does not want to hear of new ‘miracle’ treatments, he has life experience that tells him there are no silver bullets nor is there an easy way out; only hard work and perseverance can see a person through. For anyone to face this situation with the dignity, intelligence and aplomb would be remarkable; for that person to be 13 and have had to deal with the hard questions and answers of life for 5 years is . . . I cannot find the word. If you think of it, either leave a comment here or friend Evan on Facebook and let him know directly.<br />
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Looking forward, Evan will have a number of pieces on exhibit at two local Art Shows, the first at Hope Café in Garner opens on May 7; and the second is through the ‘I CANcer’ teen support group through the UNC Cancer Center that opens in Carrboro, NC on June 6. <br />
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As tempting as it might be to resign, curl up in a ball in the corner and cry ourselves to sleep; we have not done that. Each day we commit ourselves to taking one step at a time, sometimes one hour at a time to moving forward; but we have neglected some of the rudimentary aspects of life such as taking care of the house or planting an odd flower or bush to bring a sense of living home. It just seems just a little bit too fluffy if you get our meaning; and so in the vein of an American Folk Tale, our home has become a little like Rip Van Winkle – Time has gone by, but the house remains in the past. And then last week a friend, upon the conclusion of a phone call of support, offered up the line we have heard so often over the last 5 years, “Let us know if there is anything we can do.” And from that statement has sprung an idea for a summer project where people can get involved, stuck in and have a concrete contribution to Evan’s situation.<br />
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Let the need be framed; Yardwork and landscaping, driveway extension, house painting, build a shed, and retire the ~$18,000 in outstanding medical debt that has accrued over the last year and a half (We pay $350/month already and have retired some $6,000 in co-pays and co-insurance. NB. Insurance has paid the bulk of >$500,000 in fees for hospitals, providers, scans and medicine)<br />
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The idea: Miracle2012: A multi-pronged, get involved and help summer program for Evan that culminates on the weekend of the opening ceremonies of the London Olympics – July 27, 2012.<br />
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The plan: a summer of yard work and house work building the shed designed by Evan; an online auction of items gathered from Evan’s community of supporters; and culminating with a Show and a Party.<br />
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The Requests;<br />
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The request to our friend, “Would you be willing to set up the logistics for the house?” – YES<br />
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The request to friend #2, “Would you be willing to headline/assemble a fundraising music show?” – YES<br />
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To you, “Are you willing and able to lend a hand? Hammer a nail? Plant a tree? Do you have something that might be auctioned off to help raise funds for these projects? Do you have an appetite to eat a little BBQ? Or want to hear some good local music?”<br />
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Items for consideration: Top level Signed Soccer Jerseys that could be framed (MLS, Premier Lge, etc.); baked goods from around the world that might be vacuumed sealed and shipped; Original Art; Any other contribution you believe would help.<br />
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For all those wonderful people who have lifted Evan in prayer, please do not stop. For all the amazing people who have offered to do anything, here is something.<br />
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There is no report on who has visited this blog so we would ask you to take the next step and send us an email to put yourself on the line to help out. Please send your information to Miracle2012@e-colemans.com<br />
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mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p class="MsoNormal">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.<span style=""> </span>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.<span style=""> </span></p> <p class="MsoNormal">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.<span style=""> </span>But we have skipped ahead too far and too fast, let’s just slow down and start back in February of this year.</p> <p class="MsoNormal">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).<span style=""> </span></p> <p class="MsoNormal">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.</p> <p class="MsoNormal">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.<span style=""> </span>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.</p> <p class="MsoNormal">This pre-chemo-break set of scans revealed that the nodules had not really changed since the previous set of scans.<span style=""> </span>The oncologist took this to mean that the chemotherapy had run its course and that UNC was out of treatment options.<span style=""> </span>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. <span style=""> </span></p> <p class="MsoNormal">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.<span style=""> </span>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.<span style=""> </span></p> <p class="MsoNormal">60 days later the results were in.<span style=""> </span>And dad can continue being the teacher as Evan scored in the 97<sup>th</sup> 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).</p> <p class="MsoNormal">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.<span style=""> </span>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.<span style=""> </span></p> <p class="MsoNormal">The paper was well received and there was encouragement to submit it to peer-reviewed journals.<span style=""> </span>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.<span style=""> </span>There is no data on this subset of cases yet.<span style=""> </span>(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)<span style=""> </span>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.<span style=""> </span>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.</p> <p class="MsoNormal">When dad returned home, it was time to schedule the post-treatment follow-up scan - which happened 8 days ago.<span style=""> </span>We did not expect miracles.<span style=""> </span>In the past 3 months, Evan has grown almost 2 inches taller and gained over 5 pounds.<span style=""> </span>We have witnessed over his life, that as he grew bigger – so did the nodules.<span style=""> </span>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.</p> <p class="MsoNormal">It is time for a brief digression.<span style=""> </span>Two years ago Evan began the process of confirmation in our church; a guided introspective journey of education, belief and convictions.<span style=""> </span>The confirmation process will culminate today, Pentecost Sunday, with Evan’s public confirmation of his faith.<span style=""> </span>Such events and cultural practices go back millennia and are considered to be the spiritual demarcation where a person moves from childhood to adulthood.<span style=""> </span>We are reasonably confident that Evan has already crossed this bridge with everything he has been through, but ritual is ritual.</p> <p class="MsoNormal">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.<span style=""> </span>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. <span style=""> </span>We also handled the pre- and post-surgical care of a top level international soccer player on this weekend just for good measure.</p> <p class="MsoNormal">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.<span style=""> </span>We were not prepared to grasp/hear: 8 times larger than February, this will cause his death, “No, Can’t, Won’t”.<span style=""> </span>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.</p> <p class="MsoNormal">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.<span style=""> </span>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.<span style=""> </span>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.<span style=""> </span>In fact we will likely do him harm.<span style=""> </span></p> <p class="MsoNormal">For those of you who cry for Evan, and for us; thank you.<span style=""> </span>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.<span style=""> </span>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.<span style=""> </span></p> <p class="MsoNormal">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:</p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">Evan;</span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">For several years we have written about you.<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">We have written about your battles.<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">We have written about your travels, </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">and some parts of you that have travelled further. </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">We have written about your Faith. </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">We have written about your Love. </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">We have written about your Legos.<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">And we have written about your status in our life as our hero.</span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">But what is a hero? </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">Does a hero wear a long cape? </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or perhaps a mask over their eyes?<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">Maybe they can be invisible, </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">cloaked from the ‘bad guys’. </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">Or maybe they wear a jester’s hat </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">and have a shiny mirrored disco ball spray out light rays that shatter maelstrom warriors into little, tiny bricks.<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">That all sounds heroic, </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">but it just doesn’t feel right for you </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">or the world. </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">Which brings up another question, </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">what exactly do hero’s do?<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Do they attempt to eliminate all the evil in the world? </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or is it something more subtle, </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">perhaps simply providing comfort </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">or friendship to a suffering soul? </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Perhaps shielding the innocent from the ravages </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">that the storms of life seem to rain down </span></p> <p class="MsoNormal" style="margin-left: 1.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">from time to time?</span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">And where does a hero get their strength from?<span style=""> </span></span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Do you eat your Wheaties?<span style=""> </span></span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or maybe you are infused with power </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">from a sun soaked nano-suit of reactive armor?<span style=""> </span></span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or do you draw upon a power from within, </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">from a power cell that was planted in you </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">with the simple pouring of water on your forehead as an infant?</span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">And what is your real enemy?<span style=""> </span></span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Is it feeling weak </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">after holding that disco ball above your head?<span style=""> </span></span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or do you feel worn down by the constant pressure</span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;"><span style=""> </span>of battling invisible foes?<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">When you shield others do you feel chipped and broken</span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;"><span style=""> </span>and not quite whole? </span></p> <p class="MsoNormal" style="margin-left: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or is it the tired feeling </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">of trying to hide from a relentless foe </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">that never gives up?<span style=""> </span></span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Or is it perhaps, </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">a sense of faith slipping from your grasp, </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">like feeling the edge of a cliff under your heals? </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">That just one more second of your burden, </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">will end in shattered shards of glass. </span></p> <p class="MsoNormal" style="margin-left: 1.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">That the glass that shatters </span></p> <p class="MsoNormal" style="margin-left: 2in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">might be your fragile heart.</span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">As you choose to profess and confirm </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">your faith and belief in Jesus; </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">it should come as no surprise </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">that a hero cannot do </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">what they do, </span></p> <p class="MsoNormal" style="margin-left: 1in;"><span style="font-size: 12pt; line-height: 115%;">when they do it, </span></p> <p class="MsoNormal" style="margin-left: 1in;"><span style="font-size: 12pt; line-height: 115%;">or how they do it; </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">without having a hero themselves.<span style=""> </span></span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">And it is this hero of yours, </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">Jesus Christ, </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">who you try to model </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">before those you meet every day.<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">With Jesus as your hero, </span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">you do not have to be perfect, </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">because He is.<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 1in;"><span style="font-size: 12pt; line-height: 115%;">You do not have to be sinless, </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">because He is.<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 1in;"><span style="font-size: 12pt; line-height: 115%;">And when you get tired, </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">you know that He is tireless.<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 0.5in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">And when your heart feels empty, </span></p> <p class="MsoNormal" style="margin-left: 1in; text-indent: 0.5in;"><span style="font-size: 12pt; line-height: 115%;">you know that His is always full.</span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;"> </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">So as the journey of your life moves through this station; </span></p> <p class="MsoNormal"><span style="font-size: 12pt; line-height: 115%;">we give you two blessings: </span></p> <p class="MsoListParagraph" style="text-indent: -0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;"><span style="">1.<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; line-height: 150%;">Preach the Good News of your Hero to all you meet in your journey; </span></p> <p class="MsoNormal" style="margin-left: 0.75in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">do it with love, </span></p> <p class="MsoNormal" style="margin-left: 0.75in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">compassion </span></p> <p class="MsoNormal" style="margin-left: 0.75in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">and strength <span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 0.75in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">words only if necessary.</span></p> <p class="MsoListParagraph" style="text-indent: -0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;"><span style="">2.<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; line-height: 150%;">You are our hero </span></p> <p class="MsoNormal" style="margin-left: 0.75in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">as you battle against unseen enemies; </span></p> <p class="MsoNormal" style="margin-left: 0.75in; text-indent: 0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">but we know that it is your Hero </span></p> <p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">that gives you </span></p> <p class="MsoNormal" style="margin-left: 1.25in; text-indent: 0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">passion, </span></p> <p class="MsoNormal" style="margin-left: 1.25in; text-indent: 0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">peace, </span></p> <p class="MsoNormal" style="margin-left: 1.25in; text-indent: 0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">wisdom </span></p> <p class="MsoNormal" style="margin-left: 1.25in; text-indent: 0.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">and joy;</span></p> <p class="MsoNormal" style="margin-left: 0.75in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;"><span style=""> </span>So remember: </span></p> <p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">Dead heroes save no lives.<span style=""> </span></span></p> <p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">And keep on living, </span></p> <p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">for today is the first day in the rest of your life<br /></span></p><p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;"><br /></span></p><p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">All our Love</span></p><p class="MsoNormal" style="margin-left: 1.25in; line-height: 150%;"><span style="font-size: 12pt; line-height: 150%;">Mom & Dad<br /></span></p>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1724646900023102801.post-27661900807832135792010-11-25T08:23:00.000-08:002010-11-25T08:29:08.515-08:00Give 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.<br />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.<br />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.<br />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.<br />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.<br />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.<br />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.<br />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.<br />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.<br />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:<br /><ul><li><span style="font-style: italic;">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.</span></li></ul>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.<br />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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1724646900023102801.post-81871796564274020872010-08-07T06:20:00.000-07:002010-08-07T06:23:35.960-07:00The Mice of NIHFor 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.<br />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. <br />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.<br />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. <br />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. <br />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)<br />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.<br />And that’s the end of this chapter.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-77373846037279497012010-07-31T05:34:00.000-07:002010-07-31T05:37:05.182-07:00A Battle WonHope 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.<br />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 . . . .<br />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.<br />As we sat waiting at point F; Paul received a call from a number he didn’t recognize. And the following dialogue ensued<br />Excited voice, “Their smaller!”<br />Paul, “Who’re smaller?”<br />More excited voice, “Evan’s tumors, they’re smaller”<br />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.<br />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.<br />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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1724646900023102801.post-58077637424399562412010-07-18T20:03:00.000-07:002010-07-19T17:48:29.517-07:00Fish or Cut Bait<p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Two years ago Evan and parents went to the amazing and remarkable conference hosted by Nevus Outreach in Dallas.<span style="font-size:+0;"> </span>At that time Evan’s case was presented to the leading scientific experts in the field of pigmented lesions or nevi.<span style="font-size:+0;"> </span>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.<?xml:namespace prefix = o /><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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.<span style="font-size:+0;"> </span>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.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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.<span style="font-size:+0;"> </span>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.<span style="font-size:+0;"> </span>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.<span style="font-size:+0;"> </span>Love is a powerful, powerful weapon against darkness, aloneness and fear.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Timing is something that we do not understand but really appreciate.<span style="font-size:+0;"> </span>As we sat in a science meeting asking questions of experts; experts began to seek us out and asking us questions.<span style="font-size:+0;"> </span>And the dialogues lead to suggestions, and suggestions were relayed instantly to our team at UNC.<span style="font-size:+0;"> </span>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.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">But as we sat in that meeting, we received word that Evan’s experimental chemotherapy trial was not working.<span style="font-size:+0;"> </span>That we would have to go back to the drawing board and reevaluate all the options.<span style="font-size:+0;"> </span>This process was/is intellectually challenging, emotionally racking, physically tiring and spiritually draining. That has been the state of our house this week.<span style="font-size:+0;"> </span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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.<span style="font-size:+0;"> </span>When you have read through this post and you are willing to share, please email <a href="mailto:evan@e-colemans.com">evan@e-colemans.com</a> thank you.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">The time to weigh options is upon all who are involved with direct care and process in the life management of Evan Coleman.<span style="font-size:+0;"> </span>These are not easy decisions to make. With each passing development and milestone (positive of negative) the pressures seem to mount.<span style="font-size:+0;"> </span>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.<span style="font-size:+0;"> </span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">His medical team is geared to an either/or decision making process.<span style="font-size:+0;"> </span>The options are clear to this component: chemotherapy or surgery.<span style="font-size:+0;"> </span>There is at least a third option, known but not often considered, wait and see.<span style="font-size:+0;"> </span>And there may be many more options available but as yet unconsidered.<span style="font-size:+0;"> </span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">The debate: Medical options (chemo vs. surgery) vs. Parental options (action vs. inaction) the following is such a review of the situation and options.<span style="font-size:+0;"> </span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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.<span style="font-size:+0;"> </span>The quality (both longevity and enjoyment/pursuit of happiness) of life of the patient must be balanced against both treatments and outcomes.<span style="font-size:+0;"> </span>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. <span style="FONT-WEIGHT: bold"><br /></span></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoListParagraphCxSpFirst"><span style="font-family:';"><span style="FONT-WEIGHT: bold">What we know: </span><o:p></o:p></span></p><ol><li><span style="font-family:';">The tumors are locally recurrent. </span></li><li><span style="font-family:';"><o:p></o:p></span><span style="font-family:';">No known life threatening organ involvement – invasion/infiltration of solid or hollow organs </span></li><li><span style="font-family:';">The tumors are not visible on Positron Imaging, but are visible on MRI and CAT.</span></li><li><span style="font-family:';"><o:p></o:p></span><span style="font-family:';">The tumors are not recruiting nutrients in abnormal amounts (Nuclear Bone & Kidney/Bladder Scans) <span style="font-size:+0;"></span><o:p></o:p></span></li><li><span style="font-family:';">That previous surgeries have failed in the attempts to address the recurrence of the tumors, and in fact may have contributed to the recurrence.<span style="font-size:+0;"> </span>This includes wide margin excisions by a highly qualified surgeon. <o:p></o:p></span></li><li><span style="font-family:';">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.<span style="font-size:+0;"> </span>Since treatment was initiated in November 2007, there has never been a review of tumor growth rate following surgical trauma, until now.</span></li><li><span style="font-family:';"><o:p></o:p></span><span style="font-family:';">The tumors have not responded to traditional or experimental chemotherapy. <o:p></o:p></span></li><li><span style="font-family:';">The DNA of the tumor does not match any known melanoma DNA (Or other cancer). <o:p></o:p></span></li><li><span style="font-family:';">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.<span style="font-size:+0;"> </span>This is a gray area of cell science.<o:p></o:p></span></li></ol><br /><span style="font-family:';">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.<o:p></o:p></span><span style="font-family:';"><span style="FONT-WEIGHT: bold"><br /><br />Chemotherapy</span><span style="font-size:+0;"> </span><span style="font-size:+0;"></span><o:p></o:p></span><span style="font-family:';"><br /></span><ol><li><span style="font-family:';">Taxol/Carbo<span style="font-size:+0;"> </span>FAIL – inefficacy<o:p></o:p></span></li><li><span style="font-family:';">Temsirolimus/Depakote<span style="font-size:+0;"> </span>FAIL – toxicity<o:p></o:p></span></li><li><span style="font-family:';">IL2 (Interleukin II/Interferon)<span style="font-size:+0;"> </span>??? – ICU necessary due to high dose reactivity<o:p></o:p> (14 doses, spaced 6-8 hours apart, 7 day rest period, and repeat for total of 28 doses over ~12 days)<o:p></o:p></span></li><li><span style="font-family:';">Vaccine Trial<span style="font-size:+0;"> </span><o:p></o:p></span></li></ol><ul><li><span style="font-family:';">Dependent of prior failure of other agent</span></li><li><span style="font-family:';">Late stage</span></li><li><span style="font-family:';">Clearance/waiver/acceptance<br /></span></li></ul><ul><li><span style="font-family:';">Other Options presented via National Institutes of Health (NIH)<o:p></o:p></span></li></ul><span style="font-family:';"><span style="FONT-WEIGHT: bold"><br />Surgical Intervention</span><span style="font-size:+0;"><span style="FONT-WEIGHT: bold"> </span></span><o:p></o:p></span><ol><li><span style="font-family:';">6<sup>th</sup> attempt at wide margin resection with first removal of skeletal structure (</span><span style="font-family:';">Fat margin of L Kidney, Splenic border, External L Pleura, and sections of 10<sup>th</sup> & 11<sup>th</sup> ribs)<o:p></o:p></span></li><li><span style="font-family:';">Removal of bulk of tumor in biopsy process to acquire live tissue for development of vaccine.</span><span style="font-family:';">(Done at vaccine developing facility – Bethesda. MD)</span></li></ol><span style="font-family:';"><span style="FONT-WEIGHT: bold"><br />Motivations, Fears and Basis</span><o:p></o:p></span> <p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Inaction may lead to metastasis and early death.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Continued chemotherapy is causing neurological & liver damage and is leading to increased risks of illnesses later in life .<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Continued surgical therapy is validation of Einstein’s assertion regarding insanity, and will likely lead to early death.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Failure to comply with medical advice may lead to removal of valued counselors<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Psychologically the entire process has worn increasingly upon Evan’s psyche and his hope is dampened by every failure.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';"><span style="FONT-WEIGHT: bold">NEXT</span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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.<span style="font-size:+0;"> </span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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.<span style="font-size:+0;"> </span>Messy, deep, introspective, intangible questions of gut feelings based on information at hand without trying to match the quantitative information<span style="font-size:+0;"> </span>to our hopes or desires.<span style="font-size:+0;"> </span>He posed 4 thought provoking questions as a starting point to our investigation.<span style="font-size:+0;"> </span>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?<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Second on our list were Nana and Poppa, the medically experienced and smartest people we know to ask about science and medical processes.<span style="font-size:+0;"> </span>After they looked over the information you have now read, they directed us to start asking all the “What If” questions.<span style="font-size:+0;"> </span>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.<span style="font-size:+0;"> </span>So now we have Chemotherapy, Benign, Malignant, Discovery, Surgery, Vaccine, Interferon, and many others.<span style="font-size:+0;"> </span>Help us push that first question down to the bottom, send us you thoughts on “What if”<span style="font-size:+0;"> </span>Let us work through the possibilities and know that no question is too small or assumed to have been asked by someone else.<span style="font-size:+0;"> </span><o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">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<span style="font-size:+0;"> </span>a series of MRI and CAT scans and when done with that we will gather for a team review.<o:p></o:p></span></p><p style="LINE-HEIGHT: 150%; TEXT-INDENT: 0.5in" class="MsoNormal"><span style="font-family:';">Please keep us in your thoughts and prayers, and if you have the smallest idea of a question, please email us at <a href="mailto:evan@e-colemans.com">evan@e-colemans.com</a> Thank you and God’s many blessings to you and your family. <span style="font-size:+0;"></span><o:p></o:p></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1724646900023102801.post-36941365652365132382010-06-15T11:59:00.001-07:002010-06-16T04:36:24.558-07:00Pay It Forward<w:view></w:view><w:trackmoves><w:trackformatting><w:punctuationkerning><w:validateagainstschemas><w:donotpromoteqf> <w:compatibility><w:breakwrappedtables><w:snaptogridincell><w:wraptextwithpunct><w:useasianbreakrules><w:dontgrowautofit><w:splitpgbreakandparamark><w:enableopentypekerning><w:dontflipmirrorindents><w:overridetablestylehps></w:overridetablestylehps><m:mathpr><m:mathfont val="Cambria Math"><m:brkbin val="before"><m:brkbinsub val="--"><m:smallfrac val="off"><m:dispdef><m:lmargin val="0"><m:rmargin val="0"><m:defjc val="centerGroup"><m:wrapindent val="1440"><m:intlim val="subSup"><m:narylim val="undOvr"></m:narylim></m:intlim></m:wrapindent><!--[endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" defunhidewhenused="true" 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mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]-->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.<span style=""> </span>The next day he started chemo therapy. Then he developed extensive mouth sores, stopped chemotherapy, had his mouth recover, and restarted chemotherapy.<span style=""><br /></span><o:p></o:p>In the meantime back at the farm his Granddad, inspired by Evan, entered the world of computing with a splash.<span style=""> </span>He purchased an IPAD.<span style=""> </span>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).<span style=""> </span>And that is the short hand version of our interpretation of the old adage: The more things change, the more they stay the same.<span style=""> </span><o:p></o:p><br />It is nearly impossible to comprehend extensive mouth sores.<span style=""> </span>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.<span style=""> </span>To hold a mouth with five, then seven and finally eleven is beyond our grasping, and yet Evan took it in stride.<span style=""> </span>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.<span style=""> </span>It was his doctor, Dr. Blatt, who saw no need to hurt for the sake of hurting.<span style=""> </span>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.<br /><o:p></o:p>But why to you might ask has this entry been titled ‘Pay It Forward’. <span style=""> </span>It actually all starts with you the reader of this blog and ends when you are able to see where your love flows.<span style=""> </span>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.<span style=""> </span>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.<o:p></o:p><br />A quick recount of how you have enriched Evan’s life.<span style=""> </span>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.<span style=""> </span>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.<span style=""> </span>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.<span style=""> </span>Without the compassion, friendship and love of the staff at UNC he would have been hard pressed to keep going down the treatment journey.<o:p></o:p><br />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.<span style=""> </span>Even the garage door repair man’s sister went to school with his mom.<br /><o:p></o:p>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.<span style=""> </span>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.<br /><o:p></o:p>Evan would like to pay it forward.<span style=""> </span>Each time he goes to the hospital he takes three things: a new book, a way to access the internet, and LEGOs.<span style=""> </span><span style=""> </span>What he has seen when he arrives varies upon the pediatric cancer clinic emphasis.<span style=""> </span>While the building is new and bright, the faces on the patients, parents and staff will run the gamut.<span style=""> </span>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.<span style=""> </span>Happiness and laughter bring healing.<span style=""> </span>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.<span style=""> </span>Cue Evan to enter stage Left.<br /><o:p></o:p>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)<span style=""> </span>The hospital has some large open spaces, Evan has friends in the LEGO world, people want to do nice things, etc. etc.<span style=""> </span>Then the naysaying questions began: Why would the hospital do this? Why would patients do this? Who would actually build it? Blah, blah, blah.<span style=""><br /></span><o:p></o:p>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.<span style=""> </span>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.<br /><o:p></o:p>Second hurdle: Contact the decision makers share the concept and sit back and watch it happen.<o:p></o:p><br />Third hurdle: sitting back is not an option.<span style=""> </span>The hospital is onboard, always looking for ways to enhance patient experience and raise awareness.<span style=""> </span>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.<o:p></o:p><br />At this point, 6 months into the idea phase and meeting this perpetual resistance was tiring.<span style=""> </span>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.<o:p></o:p><br />The idea was again refined.<span style=""> </span>Why do this at just one hospital.<span style=""> </span>There are many hospitals and many patients who would benefit from the project across the US if not the world.<span style=""> </span>Secondly, LEGO can be heated to sterilization temperatures so that even patients in isolation can participate in building.<span style=""> </span>It can be used as a fundraising and awareness event for cancer projects across the country.<span style=""> </span>Bricks could be bought by corporations for publicity and donations.<span style=""> </span>LEGOs can be acquired for pediatric units across the world.<o:p></o:p><br />Hurdle Four:<span style=""> </span>The present.<span style=""> </span>To build a scale model of ‘Jabba’, Evan needs ~5,000 bricks to make a model 2 feet tall and 5 feet long.<span style=""> </span>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.<span style=""> </span><o:p></o:p><br />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.<span style=""> </span>Please send donations payable to: EVAN’s FUND to 2664 TIMBER DR - STE 198, GARNER, NC 27529.<span style=""><br /></span><o:p></o:p>And now some pictures from Brick Magic<br /><br />The Welcome Banner<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgid47cvTK6zCPM4IIau1uYdyEgOZ58v8QldY8eOKffesFxp7kFxNcDjVyqKrH3GputaQAw8gxUdl7MtPmB73LiKKEflez7vTrfZuXMme39-Q6IirU9WAwVZKSIef1-dDuD8asJ-MAW9Rs/s1600/IMG00125.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgid47cvTK6zCPM4IIau1uYdyEgOZ58v8QldY8eOKffesFxp7kFxNcDjVyqKrH3GputaQAw8gxUdl7MtPmB73LiKKEflez7vTrfZuXMme39-Q6IirU9WAwVZKSIef1-dDuD8asJ-MAW9Rs/s200/IMG00125.jpg" alt="" id="BLOGGER_PHOTO_ID_5483331890167446210" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg">Evan's Table</a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"> </a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s200/IMG00152.jpg" alt="" id="BLOGGER_PHOTO_ID_5483079769673119810" border="0" /></a><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRKKLvVI3MAwpTv5mpLptYJPeAxmI-y4JWiDUcB1u-kjqTcvsKxEAaB2aCaRXu8s6LrL4GnC3s7FqDBSdpfjA1dGuAphciCdMTRfO05RveAISZAaO6_U4Sj49_s2gKR35ojP0dKxdk2j4/s200/IMG00159.jpg" alt="" id="BLOGGER_PHOTO_ID_5483082171539875090" border="0" /><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg">Tyler stops by</a></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"> </a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-chPczDIBQT3cUVQAtfmSg-9zwVXaBKxiCKTCQZmka0_h7NfblNvqtf1sjrgnmCwDyI_OA4d9t5xXY3wlRSzpWBps8zApmSRd6t6FfAI5VZtDS6P3TtvC0pLanHhIDYss4iC6l7nuzXk/s1600/IMG00137.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-chPczDIBQT3cUVQAtfmSg-9zwVXaBKxiCKTCQZmka0_h7NfblNvqtf1sjrgnmCwDyI_OA4d9t5xXY3wlRSzpWBps8zApmSRd6t6FfAI5VZtDS6P3TtvC0pLanHhIDYss4iC6l7nuzXk/s200/IMG00137.jpg" alt="" id="BLOGGER_PHOTO_ID_5483082146163188850" border="0" /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYS69qQ86gjpkbpbLU3Dv5GGdFAjJyUjiua0B_3gkkc4eg9Ps06_6xB1pL5-DJicon29AYdehSNdV4ORID5DUfbbRkQtnBhTpyYY8UzaXzRJvdP5tmZ3q6io_fblnrQE27vf91sgYQMk/s1600/IMG00152.jpg"> </a></p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg">LEGO city</a><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg"><br /></a></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg">Evan builds for LEGO</a> </p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s1600/IMG00135.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFcvR-1cfG0pLCAoJfLKFPTTkMtwFap3m3-kW3j3upwZhyEg7yzk079c3jUaHE1ebuFOAsgWvE6ALuobWidoo2eKgN6x55Qe8vw3oNX7BxQS_NDSqGbESOmcRsFix8IiRLTelvX-IOQ/s200/IMG00135.jpg" alt="" id="BLOGGER_PHOTO_ID_5483079754137671026" border="0" /></a>Evan builds more 4 LEGO<br /></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVmEiy-C0mNswLcIXo6Iv-Liy9pco9kfcHBIcJxvIgRqrWP4jM1rD0pEJfgFJYIWhhqx9maVVbNFDXjqfc8gL6S_lhacwS6dAl8zOZEPBpl2FOKf1nsmTOt0AZo-za9aXZINLQqbDSsik/s1600/IMG00127.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVmEiy-C0mNswLcIXo6Iv-Liy9pco9kfcHBIcJxvIgRqrWP4jM1rD0pEJfgFJYIWhhqx9maVVbNFDXjqfc8gL6S_lhacwS6dAl8zOZEPBpl2FOKf1nsmTOt0AZo-za9aXZINLQqbDSsik/s200/IMG00127.jpg" alt="" id="BLOGGER_PHOTO_ID_5483079750112530290" border="0" /></a></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">Joe Meno admiring fellow adult fans of LEGO<br /></p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJOXdA61xBMnDQo7rChTYppzQsvuE6trBAb8twTNvNknCM_5npK_m0WdAqud9JN-MYHjjqncUPcsJVo2Kk3yc_AQEre_ciZZSxn-o7VKChToBmEiwmSJU_odgK-oSlQj67q4R-NCYfK60/s1600/IMG00154.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJOXdA61xBMnDQo7rChTYppzQsvuE6trBAb8twTNvNknCM_5npK_m0WdAqud9JN-MYHjjqncUPcsJVo2Kk3yc_AQEre_ciZZSxn-o7VKChToBmEiwmSJU_odgK-oSlQj67q4R-NCYfK60/s200/IMG00154.jpg" alt="" id="BLOGGER_PHOTO_ID_5483079768670022082" border="0" /></a></p><p class="MsoNormal">Evan answers questions</p><p class="MsoNormal"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBBQbh21fFI15ZPQXn89sbVivwRD-_ySXxNXY2BTYb7EvsI7F4LKRH_VZafFJRuddRkv7OreA6Yj2dfF2M0kwkqrPlZTGRbMac0i_b6rn4bnUxZQi6q8d7uXh4cW2FfvliE67Wl26l94/s1600/IMG00160.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBBQbh21fFI15ZPQXn89sbVivwRD-_ySXxNXY2BTYb7EvsI7F4LKRH_VZafFJRuddRkv7OreA6Yj2dfF2M0kwkqrPlZTGRbMac0i_b6rn4bnUxZQi6q8d7uXh4cW2FfvliE67Wl26l94/s200/IMG00160.jpg" alt="" id="BLOGGER_PHOTO_ID_5483082149445974498" border="0" /></a></p><p class="MsoNormal"><br /> </p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><br /></p><p class="MsoNormal">Nathan Sawaya - LEGO Artsist<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS-Tr-c90fpvwakBZoeU_c5Q2XBsJjIPb-gyaJMPFNbbW_Zl-SqyPNr_PCBsGehSTW5zl7yCFO0Lo1qKiN8CDBjt72yboa2brxq5a0rHFFGqB_Arrhbp-s1Q6TQRrUfzcjuOiltysvNj0/s1600/IMG00161.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 152px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS-Tr-c90fpvwakBZoeU_c5Q2XBsJjIPb-gyaJMPFNbbW_Zl-SqyPNr_PCBsGehSTW5zl7yCFO0Lo1qKiN8CDBjt72yboa2brxq5a0rHFFGqB_Arrhbp-s1Q6TQRrUfzcjuOiltysvNj0/s200/IMG00161.jpg" alt="" id="BLOGGER_PHOTO_ID_5483082165326594034" border="0" /></a></p><p class="MsoNormal"><br /><o:p></o:p></p></m:defjc></m:rmargin></m:lmargin></m:dispdef></m:smallfrac></m:brkbinsub></m:brkbin></m:mathfont></m:mathpr></w:dontflipmirrorindents></w:enableopentypekerning></w:splitpgbreakandparamark></w:dontgrowautofit></w:useasianbreakrules></w:wraptextwithpunct></w:snaptogridincell></w:breakwrappedtables></w:compatibility></w:donotpromoteqf></w:validateagainstschemas></w:punctuationkerning></w:trackformatting></w:trackmoves>Unknownnoreply@blogger.com0