Saturday, February 23, 2008

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 . 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.

Sunday, February 10, 2008

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!


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

Another of my Uncle Jon’s friends, Gene, sent me this link 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 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.

Monday, February 4, 2008

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.

Saturday, February 2, 2008

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.

Friday, February 1, 2008

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.