Saturday, June 4, 2011

Confirmation - Frustration

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


For several years we have written about you.

We have written about your battles.

We have written about your travels,

and some parts of you that have travelled further.

We have written about your Faith.

We have written about your Love.

We have written about your Legos.

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

But what is a hero?

Does a hero wear a long cape?

Or perhaps a mask over their eyes?

Maybe they can be invisible,

cloaked from the ‘bad guys’.

Or maybe they wear a jester’s hat

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

That all sounds heroic,

but it just doesn’t feel right for you

or the world.

Which brings up another question,

what exactly do hero’s do?

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

Or is it something more subtle,

perhaps simply providing comfort

or friendship to a suffering soul?

Perhaps shielding the innocent from the ravages

that the storms of life seem to rain down

from time to time?

And where does a hero get their strength from?

Do you eat your Wheaties?

Or maybe you are infused with power

from a sun soaked nano-suit of reactive armor?

Or do you draw upon a power from within,

from a power cell that was planted in you

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

And what is your real enemy?

Is it feeling weak

after holding that disco ball above your head?

Or do you feel worn down by the constant pressure

of battling invisible foes?

When you shield others do you feel chipped and broken

and not quite whole?

Or is it the tired feeling

of trying to hide from a relentless foe

that never gives up?

Or is it perhaps,

a sense of faith slipping from your grasp,

like feeling the edge of a cliff under your heals?

That just one more second of your burden,

will end in shattered shards of glass.

That the glass that shatters

might be your fragile heart.

As you choose to profess and confirm

your faith and belief in Jesus;

it should come as no surprise

that a hero cannot do

what they do,

when they do it,

or how they do it;

without having a hero themselves.

And it is this hero of yours,

Jesus Christ,

who you try to model

before those you meet every day.

With Jesus as your hero,

you do not have to be perfect,

because He is.

You do not have to be sinless,

because He is.

And when you get tired,

you know that He is tireless.

And when your heart feels empty,

you know that His is always full.

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

we give you two blessings:

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

do it with love,


and strength

words only if necessary.

2. You are our hero

as you battle against unseen enemies;

but we know that it is your Hero

that gives you




and joy;

So remember:

Dead heroes save no lives.

And keep on living,

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

All our Love

Mom & Dad