Monday, July 9, 2012

Hey Dad . . . When am I gonna get better?

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.”

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.

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.

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.

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.

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.

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.

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”

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.

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.

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.

And finally we came full circle in our early Independence Day conversation to a family favorite poem:

Footprints in the Sand

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.

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.

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."

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."

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.

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.

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.

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.

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.

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.

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.

Monday morning:

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.”

20 min later Call 2: “Since you haven’t needed it till now, could I mail it to you?”

Unfortunately for the sake of decorum we are unable to relay the other side of Call 2, but it wasn’t pretty.

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

1 comment:

thelittleburnsfamily said...

Your story grips my heart. I have posted about it on my own blog,
We are praying for your family. There are no words.