Into the World, "What? A party for me?"

Two weeks of healing, two weeks of learning patience, two weeks of giving thanks, two weeks of waiting. Since Evan dumped his walker he has progressed rapidly, perhaps too rapidly for his parents. The protective bandages have been removed and twice daily dressing changes have been exchanged for lotion rub downs and scar massage. To the average adult, the thought of lotion and massages conjures up images of spas and aroma therapy. Evan sees things in a different light. All his involved skin is hyper sensitive, and scar massage is not a comfortable process, besides he would rather play with his favorite birthday present (or anything else for that matter.
Segue; Evan celebrated his 9th birthday on February 16. He though his sister left for the weekend as his personal present, she actually was on a confirmation retreat. As parents we decided not to ruin the moment and share that she would be returning on Sunday. Each day is special and brings new joys, but birthdays are extra special, and so we had an Evan day. First there was the Lego at the foot of the bed, followed by a terrific breakfast care of Mommy, then we all (Granddad, Mommy, Daddy and Evan) went to see the Spiderwyck Chronicles. The day was complete with peanuts, steak and a Logan’s ‘Yee-Haw!’ The day was complete with an early bedtime before a busy and eventful week.
His favorite birthday present, a PSP from Matt and Angie has rarely left his side, and Evan loves to see if he can access the internet wherever he goes. He will do anything to get to http://www.lego.com/ . Monday was a full day out with Dad at work, Tuesday was the same. By Wednesday he was ready to stop dressing changes and have a try at going back to school. Half a day seemed just about right to start, and by Thursday he was back to full time (No PE/Gym or recess for a few more weeks). Thankfully Mrs. Hefner brought homework to Evan while he was off (Not so thankfully for him) that when he got back he did not have tons of stuff to make up.
Now we wait. We wait for results, we wait for bills, we wait for Disney World. It is unlikely that we will hear any results before March. The speed with which information was shared prior to full and consensus opinion could be established before means that we will patiently wait. Evan believes that he is going through this so that God can show the power of miracles in the world today. After all science has a hard time explaining so much of the circumstances around what happens in his body.
We have begun to receive the bills. These are not unexpected, although even the jaded parents with medical backgrounds have had a few face blanching moments upon envelope opening. Ah, the joys of an imperfect health system, caring parents, a sick child with a rare illness, and a political system where no one has the intestinal fortitude to meet the problem truly head on (but lest this blog take on a political tone, we digress) .
And then there’s Disney World. The confluence of Spring Break, a child’s requirement to visit the Magic Kingdom, and the replacement of hard wood floors has ‘forced’ us to retire to central Florida at the end of March. This will be our own Extreme Home Makeover vacation and we are all really looking forward to a little fresh-from-the-grove orange juice. Till we write again please keep each other in your prayers as we keep you in ours. Love Evan and Co.

Goodbye, my four legged metal friend!

Thank you to all the people who prayed for me. I am feeling much better this week. I haven’t had to say fish whiskers or horse biscuits in the last 3 days. My dressing change on Friday seemed like a really big deal, and I was a little afraid. It only took 18 minutes, Wooo Whoo. Mom and Dad now change my dressings twice a day. Tonight they took a photograph of my back so that I could see. It was huge! I’m not ready to share pictures of that yet, so I had my Mom and Dad take some pictures so I could share my thanks for the awesome gifts that have helped me with not being bored.

Thank you Ethan.

My friend William and I are going ‘berserk”

Snoopy the exhausted pet (I’m pretty sure his tongue is purple from barking)

My teacher, Mrs. Hefner, came for a visit.

Morgan’s gone angry!

The special candy tower – Thanks Sarah!

Yeah!

Thank you for the books and videos sent to keep me from going crazy.

Some really cool stuff from Lockheed Martin/NASA from Kevin Roots, a friend of my Uncle Jon. He also sent me a cool link to the real Mars Mission website http://marsprogram.jpl.nasa.gov/missions/present/odyssey.html

Another of my Uncle Jon’s friends, Gene, sent me this link http://www.mitre.org/news/digest/advanced_research/ I’m smart, just not that smart, yet. But my dad said it had some really ‘fascinating’ research, but what does he know, he can’t even put together a simple Lego Vulture Droid.

Me and the full coverage get well card from my Cub Scout Pack. Go Pack 24, you Rock!

Today is Sunday, February 10, 2008, and today I kicked my walker to the curb. It was a tough 10 days, from bed, to chair, to walker, to crawl to walk. Now I just want to yell, “FREEDOM!”

A special thank you to Mike Furrey of the Detroit Lions; another of my Uncle Jon’s friends, he sent me a link to his website http://www.mikefurrey.com/ He and his wife set up a foundation to give back to the kids in need in Detroit and Columbus. It was cool to see a professional athlete giving back to his community.

From Mom and Dad – Thank you for all of your thoughts and prayers. We know and have known that we are being held up by and through your simple efforts. And while we know that the answers to our question lie in a different place, we are fortified by the knowledge that so many have shared their love with us and for us. We have felt it through the phone, a note card with a kind word, a meal, a shoulder to cry on, an ear bent to hear a simple plea. Each moment taken on its own is but a grain of sand; together we see a sandy beach at an ocean’s edge, and a blue sky overhead.

We now await the result of the pathology of tissue taken from Evan’s back, Scans and follow Ups have been scheduled; but so also we have scheduled vacations, and look forward to making our future plans while keeping a ‘weather eye’ on the horizon.

Mercy, peace and blessings to each of you who reads this blog, in many times the measure that you have shown us during this most challenging of times.

Fish Whiskers and Horse Biscuits

Evan’s paternal grandmother, Nana, a very wise woman, has rules. Good rules, but rules none the less. One very important rule is: swearing is bad, using swear words is a sign of an uneducated mind. Not wishing to appear uneducated, but dealing with pain that demands the use of some expletives; Evan has stepped up the plate and delivered a home run. Enter Evan's words of the day "Fish Whiskers" and "Horse Biscuits".

Evan’s advice is simple. Fish Whiskers is said between closed lips while clenching teeth. It is used at times of great physical exertion while dealing with prolonged persistent pain. Horse Biscuits is delivered with one’s head leaning back and upwards towards the ceiling/sky, in a deep guttural yell. This technique is reserved for those sharp, sudden and unexpected pains typically experienced when someone steps on your foot, kicks you in the shin, or unexpectedly moves a skin graft donor site without warning.

The ability to fight through the pain using these simple techniques is highly recommended to all who might face physical challenge or pain.

Evan’s tips on a happy healthy recuperation will soon look at the benefits of Lego as an occupational therapy and constructive encouragement technique in the near future. For now, from Evan to you, good bye, good health and God bless.

Home Sweet Home!

Today, after an unexpected 24 hour stay, Evan came home from the hospital. All said, the extra time was very good for him, he got great rest, made new friends, and knew that when it was time to go, he could "blow this popsicle stand" on his time.

The graft donor site on the back of his right thigh is very tender, and quite painful when he moves around. But the amount of drainage has slowed down considerably. The grafted sites, where tissue was taken out, are not nearly as uncomfortable.

When Evan got home he found a package waiting for him. Lego! The last elements of his complete Mars Mission theme arrived. With the help of a mini folding table, he sat up and assembled legos for a couple of hours before enjoying a tasty meal brought over by Ms. Danielle and Mr. Jeremy. (Thank you to all who have provided meals, transport, shelter and love) After this wonderful meal, he retired for the evening. It had been a long, tiring and at times painful day.

Morgan, Evan's sister, having spent the night at Mr. & Mrs. Woodards with her friend Ryan (Sp? apologies) was taken to her soccer game by her mom, an unanticpated event that was good for both of them. We will now all lay low and take things one day at a time.

As always, thank you for your thoughts, words and prayers, Evan feels lifted up and encouraged by all the wonderful words of support by both those he knows and those who he will get to know.

There is no place like home.

By Him, Through Him, For Him, Thank you.

Ow!! That hurts.

Live from Room 5126 Duke University Hospital we bring you a post surgical report.

Surgery went well. the final procedure included wide margin excision of the initial primary site, an initial excision of a 'spot' of interest to th edermatologist, and the removal of a smaller mass that has seen some growth over the past 4 months.

It was the thrid site that presented the surgical challenge of the day, requiring the surgeon to conduct a serial excision of the bottom side, until he thought he was in 'clean' tissue. As he has operated on many patients with nevi, and as he was familiar with the initial findings, his thoughts were that he did not want to come back and have to do a re-excision of this spot in 60 days time.

The size of this third excision coupled with teh wide margin excision of the primary site meant that for a good wound closure, it would require a skin graft. This skin graft was taken from the back of his right thigh and measured ~4 inches x ~9 inches.

Given the length and extent of the surgery, Evan was given plenty of anesthetic and plenty of time to recover later. As he came out of the anesthesia fog he became aware of increased discomfort from the graft site and later the extent of donor site oozing. One intern, and a dressing change later destined us to a night at the Hotel Duke UMC.

Thank you for all your prayers, and we look forward to updating the information later.

FEAR!

“All we have to fear; is fear itself” – Franklin Delano Roosevelt- Fireside chat – midst of the Great Depression

“Ye, though I walk to the valley of the shadow of death, I shall fear no evil” – Psalm 23:4

What is fear? We all have felt it. It is the deep sinking knot in the pit of your stomach. It is the cold clammy creeping sensation of unanticipated unsought solitude. For each person it’s different. Perhaps it is the sense of terrifying height atop a cliff wall, or the sense of unscalable depth at the bottom of a bottomless hole. Stephen King the master of many a fearful mental image has written that it is his ability to write down his deepest fears that has brought him freedom from fear; so here are some fears that have floated unspoken through the hallways of our home these past few weeks.

For Evan it has been the fear that he would die; fear that a second unanticipated procedure would either end his life prematurely, or that the cancer might overwhelm his entire body during the time he was asleep for the operation. It has been the fear of IVs, of pain and discomfort, the fear of not being able to grow up and fulfill the dreams of an eight year old. It has been the fear, that if he shows his fear he will cause his parents additional anguish. It is an unspoken thought that he may have committed some unknown transgression that he is being punished. All of his fear has no foundation, all this fear has no rational basis, all this fear that has been borne as a weight of self determined isolation. It is profoundly sad, and heart breaking, to observe a normally vibrant and effervescent child pass through this valley. But he has hope.

For Evan’s sister it is her potential loss. It is the depth of despair brought on by a lack of knowledge, the awareness of whispered conversations. It is held in a heart filled with compassion that cannot find the right avenue of expression. It is held in the desire to generate attention seeking events so as to draw the family to activities and spectacle that will move the focus from death and illness toward light and life.

For Evan’s grandfather fear is held in the knowledge of 83 years experience. That life is not fair. That people die. That children can and do suffer. That the power found in and through prayer, while profoundly strong, can leave us with the hollowness of our minds and bodies ravaged in this world.

For Evan’s parents it has been a gamut of thoughts and a gauntlet run from moment to moment since a diagnosis was confirmed, then a scan returned negative, followed by a recommendation for surgery that seemed to be unnecessary. The core of Evan’s parent’s fear leans toward post-surgical issues. What will be the extent of physical limitations? How much muscle will be taken? What will be the long term physical challenges?

The fears of the parents are remarkably different than those of the other members of the family. Fear affects each person individually, running rampant in isolation, stamped out within a unified community. While the cancer is real, this operation is not so much life and death, but rather a tool of confirmation – “we got it all and this is to ensure that fact” The doctors are great and the staff is better.

Fear, like sin, does not operate in the light, it prefers darkness and solitude to really function well. Today we met three beacons of light at Evan’s pre-op clinic visit at the Duke Children’s Center. First we met Ms. Bridgette, a nurse practitioner. She is the anesthesia team liaison. This past year she was part of a mission trip to Sierra Leone, and has a wonderful sense of humor. She had us quickly laughing as she asked questions and shared all the details surrounding anesthesia for surgery. Ms. Bridgette then introduced us to Ms. Darcy.

Ms. Darcy is a tour guide for children heading toward surgery. Ms. Darcy spent over an hour giving Evan a tour of the Surgical Suite; she took us from arrival to waiting room, from waiting room to pre-op, then from pre-op to surgical prep, from prep to operating room, and from operating room to recovery. After the tour she took us back to her office and took Evan step by step through his entire procedure spending extra time on exactly how an IV is started (Evan’s most focused fear).

After we finished our visit Ms. Darcy, we met Ms. Laurie, a social worker connected with the pediatric oncology team at Duke. She had heard a lot about Evan from Dr. Greiner and wanted to make herself available to us to answer any questions we might have. After 5 minutes with Evan, he had another friend who loved hearing about his happy memories from his trip to Kenya.

Evan’s day started out with an anxiety level of 7, and thanks to the light shed by his new friends, it ended at a level of 2. From his parent’s perspective, Evan went from quiet and pensive, back to a very relaxed and rambunctious 8 year old boy. All boy, all the time; just the way we like him.

We need to give a special thank you to all you who have kept Evan in your thoughts and prayers; to those of you who have called with a thoughtful word of understanding, or given experienced counsel. We have felt the real support of your prayers. While there are times when we have to walk this road alone, your support sheds light on our path, and your love encourages us to not despair but to live this life in abundance.

Evan would like you to read this psalm. He would like you to see how the words are so beautifully put together to capture peace, fear, strength and hope. Whether you ascribe to Evan’s understanding of origin of the psalm, it is the ability of the writer to convey the images in a way that transcends the bounds of organized religion. Truly children know God in their hearts better than any PhD can in their head.

The Lord Is My Shepherd
23:1 The Lord is my shepherd;
I shall not want.
2 He makes me lie down in green pastures.
He leads me beside still waters.
3 He restores my soul.
He leads me in paths of righteousness for his name's sake.
4 Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;y
our rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
6 Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord forever.

Answers and a Plan

There were questions, there was a meeting, answers and information were given, and a plan of action was laid out.
In the meeting were: Lizy & Paul (Evan’s parents), Dr. Wechsler – Chief of Pediatric Oncology, Duke; Dr. Prose – Chief of Pediatric Dermatology, Duke; Dr. Marcus – Chief of Pediatric Plastic Surgery, Duke; Dr. Greiner – Pediatric Oncology Resident Fellow. As a friend commented the next day, there was enough brain power in that room to power the QE2 from London to LA.
The Questions with Answers in BOLD
What exactly are you proposing?
Team Proposal (TP): Wide margin excision of the area surrounding the original mass site to add a 2cm safety margin at the surface, and a depth of the underlying tissues beyond the depth of infiltration and scar tissue from the previous surgery.
When? 10, 30, 60, 90, 180 days
TP: Sooner rather than later (1/22/08 Dermatologist visit, 1/31/08 Pre-OP, 2/1/08 Surgery) PET/CT follow Up Scan ~5/1/08.
Where What exactly are you looking to excise? How deep? How wide? What structures?
Surgeon: ~21 cm length x ~4 cm height x Fascia level + Scar + some latisimus muscle
Why are you recommending this course of treatment at this time?
Oncologist: As a precaution to try to ensure that any cancer cell migration will be captured so as to attempt prevent a recurrence. As there is no expectation of a ‘clear margin’ except at the depth of the surgery, using the 2 cm protocol demonstrated to be successful in more prevalent melanomas seems most conservative and most preferable from a patient outcome.
With a negative scan, what is the motivation to excise further?
Oncologist: While the results of the 1/31/08 scan were extremely encouraging, this particular scan is only sensitive down to detecting tumors greater than 1 cm diameter.
What were your thoughts on the articles which were sent to Dr. Greiner?
Oncologist: Fascinating articles of cutting edge science; however, the clinical application of articles has not yet been formulated, and the methods of determining genetic information requires a special post surgical process, not the standard formalin/paraffin wax fixing.
Are you open to a genetic study of the tissue from block 7?
Dermatologist: Due to the restrictions noted above, no. However, since two of the authors of the article on GCN are friends, I’ll call them and see if they’re interested in tissue from this surgery.
Why are we having to ask for information?
TP: Because most parents do not want it, so this is new to us. That said, it is very encouraging to us that you are so active in your advocacy for Evan. Anything you want is there for the asking up to and including our raw data, Do you need a copy of the actual PET/CT scan?
Do we need a patient advocate?
No, They wouldn’t do nearly as good a job, please continue to ask all the questions you can think of, and please bring any further articles of interest forward.
Do you now consider the whole excised mass to be melanoma, even though the melanoma only showed up in one very specific location and only in very limited sections?
Yes, as a precaution, we must consider that as there were no ‘normal’ sections, that the entire mass must be considered to be melanoma, and it is that information that we base the recommendation of wide margin excision.
Evan will be picking up a video camera and putting together a short movie in the near future for this site. A note of thanks that your continued prayers and notes of support are greatly appreciated.