UPDATE . . .UPDATE. . . UPDATE. . .

While we do not believe in ‘Fair’ as in, “She got to do it, and I can’t; that’s not fair!” It only seems fitting that young master Evan gets to enjoy a sunny day or two at this point in his life and his perseverance through the tough part of his life journey that he is emerging from. It also only seems ‘fair’ to keep all the faithful people; who have followed, thought about and prayed for Evan, up to date on how he is doing.
Evan is doing very well. While there are monthly trips to the Pediatric Oncology Clinic at UNC Chapel Hill; these are to maintain the health and viability of his surgically implanted port. These port flushes must be conducted once a month until the port is surgically removed. It has been decided that the port shall remain in place until we get through a sufficient number of follow up scans as to confirm what we are seeing – the cancer is gone, and isn’t coming back.
The scans will be MRI’s every 90 days for the next 2 years or so coupled with accompanying alternating visits to his Pediatric Oncologist, and the Oncosurgeon. The only other long term physical impact will be the ongoing cleanliness and infection avoidance rituals affecting his left arm (Washing hands, scrubbing nails, no gardening without gloves and long sleeves, etc.)
On Evan’s scholastic front, he completed 5th grade and is now considered a rising 6th grade middle school student. He won his section of the Science Fair, and the blue ribbon hangs proudly from one arm of the stand. The same day he presented his project, the Melanoma Giant Nevus foundation threw a benefit concert on Evan's behalf. Heather Wray did an amazing job, and the talented musicians were spectacular. The blue ribbon would have been anti-climactic if a friend from church hadn’t started shipping parts to Evan and asking him to build a computer for him.
It seems that the order or importance and priority of topics for this post are in reverse order – if you were Evan. This is stated because the last couple of tidbits for this post would undoubtedly been the first and possibly only information shared if Evan were the author. That would be because Evan’s mind revolves around two concepts, computing and LEGO. And the first item of importance in Evan’s world would have been the opening of a LEGO store right here in Raleigh. At the beginning of this year, there were only 11 LEGO stores in the USA, so this is a big deal.
Evan had been granted the wish of his life n January, a trip to LEGOLAND in California, by the wonderful people at Kid’s Wish Network. When I (Dad) heard about the new LEGO store opening in Raleigh, I called KWN and asked if we could talk to LEGO or if they would prefer to make contact. They (Vanessa) graciously told me that they would be happy to contact LEGO and see if their #1 fan in NC might ‘help’ with the Grand Opening.
At least a month went by and then a phone call came out of the blue – the LEGO Master Model Builder was going to be in town for the Grand Opening and would like to meet Evan. The rest is history. Evan met Dan Steinenger, the only LEGO Master Model Builder in the USA at the end of day 2 of a 3 day Mega-Build event for the Grand Opening. Dan was in town to oversee the building of an 8 ft tall Yoda from Star Wars, Evan wanted to meet the man he hopes to replace when he enters the workforce. We’re not sure how long Dan had intended to spend with Evan, but he asked Evan if he had any questions; Evan pulled out the list of previously dictated questions, and all of a sudden there was a meeting of the minds. Not just Evan to Dan, but Evan to Bob (The manager of the Potomac Mills store in VA) and Evan to Joe (The Editor of Brick Journal, the LEGO aficionados monthly fix of all things Brick) A brief meeting lead to a leisurely 2 hour dinner which lead to the male bravado of social events (Anything you can do, I can do better!) and Evan threw down the gauntlet, breeching all known LEGO etiquette, he challenged Dan to a LEGO building race.
And so the next day at 3:00 pm, the race was on



By the time the afternoon was over, Evan was completing Yoda, Morgan had won a major LEGO set, Mommy was frantically looking for a 2 x 6 Yoda green brick, and Daddy had redesigned the base unit of Yoda assembly to account for a brick shortage; and most importantly for the next installment, Evan has been invited to attend the Brickworld convention in Chicago as the guest of Joe Meno, the Owner/Editor of Brick Journal.

No Words

No words will ever capture the depths of despair that a person can sink to when they hear that their child has cancer. Similarly, there is no greater joy than hearing “Your child is cured” after an illness, whether an earache or chicken pox. But there is a time spent in purgatory for those who have undergone treatment for cancer and are given a ‘clean bill of health’. There is no way to guarantee that every last cell has been killed or removed and so for the next 5 years there will be regular scans to establish a baseline and seek to determine and changes by comparing one scan to another.
Evan is recovering well from his surgeries. He is returning to school, participating in the Science Fair and learning that the PT after his mom’s name is not for Phyiscal Therapist, but rather Pain & Torture or perhaps Physical Terrorist. The latter is a result of the work being done to regain full use of his left shoulder that was held immobile for a couple of weeks after the removal of the lymph node network in his left arm pit (21 nodes removed, 2 with metastases at level 1, no metastases to level 2 or 3).
The mass was removed with negative margins (no tumor present at the border of the piece that was removed) leaving a defect (medical term for crater) that is ~3-4” in diameter and ~1” deep. The defect was covered with a skin graft from his left thigh. Both the donor site, and the excision site are healing well.
Thank you for your prayers, support, meals and other ways you have reached out to help us through this part of this journey. It is in God’s hand now (That’s what a doctor might say), we believe it has always been in His hands. Now we just have to deal with the realities of bill for surgery and hospital stay. As we contemplate how that will come to pass, please enjoy some pictures of Evan post surgery.

We're Home

We arrived home today about 5:00pm. We had a pain pill about 30 mins before we left and he slept most of the way home, which was good because the getting in and out of the car was tough! Thanks to having a wheel chair delivered to our house yesterday, we were able to lift him in the wheelchair up the front steps, as he hasn’t started walking yet. It’s still pretty painful to put weight on the left leg where the donor site for the skin graft was taken.

He is glad to be home, albeit a hospital bed in the dining room. But his buddy Snoopy (our dog) was sure glad to see him and hasn’t left his side since we got homeJ

We don’t have any pathology reports back yet. We are scheduled for a return visit Monday to UNC to see the onco-surgeon and next Thursday the plastic surgeon who will do a dressing change.

God’s grace is sufficient…and we really appreciate all the cards, calls, visits, gifts and foodJ Nana, Granddad and Morgan have done a good job holding down the fort while we were away.

Evan’s baby cousin, Joshua, also underwent surgery today back home in Michigan which was successful, so we have lots to be thankful for todayJ

Love and many thanks,
Paul, Lizy, Morgan and Evan <><

All in good time

The day after surgery and just hours before their 1-0 victory over the New England Revolution, 12 of Evan's friends from the Carolina Railhawks stoppped by to wish him a speedy recovery (Pictured on the left Nate Norman, Brad Rusin, Caleb Patterson, Jack Stewart, and Paul Ritchie; on the right John Gilkerson, Brian Plotkin, Josh Gardner, Eric Reed, Steven Curfman, and Caleb Norkus. Not pictured Mark Schulte)

Time. This will take time. If there is a time for all things then we are now in the time of healing. Concurrently we exist in the time of pain, and time of preparation for discharge; but it is the ever present ticking of the proverbial clock that marks each day. Around us are so many families with so many hurting children from so many causes; and yet there is a quiet solitude that is the background for our current step.

48 hours ago we were tearfully sending Evan back to an operating suite where we didn’t know what was going to happen, just that a surgeon was going to do his best to remove all traces of cancer. All we knew was that Evan was as scared as we have ever seen him, and in recovery he shared that he hadn’t been able to keep himself together when they got him to the operating room. The relief he felt when he could look in our eyes and know that he had survived was a palpable weight lifting off his face, and sleep soon followed.

Actually sleep has been the primary focus of the last 48 hours. There have been the requisite input/output breaks, medications moments and of course Lego construction therapy; but mostly it has been about studying the inside of his eyelids. Narcotics will do this to a person.

Evan controls his own destiny for this next step, to be able to ambulate, to get into and out of bed without excruciating pain, to be able to breathe deeply enough. Pain management is a function of medicine, time and activity. Medication is scheduled against time, activity is measured against time, and time knows no measure but the passing tick tock of a clock.

Peace is that place in your heart where you find tranquility about your purpose and place in any given moment. Having achieved a positive surgical outcome, it would seem likely to be at peace, but the restless soul always seems to seek out the next step rather than to bask in the glory of the grace of this given moment. It is at these times that our friends in ENCVDC share the words of supportive peace, God Loves You And So Do I.

Your thoughts and prayers have given us the presence of peace through these past hours of torment, and they continue to see us through our current challenge and time of healing. So we leave you with this thought GLYASDI(We)

The Closing

Just had visit from Pediatric Plastic Surgeon. Evan will be out of surgery shortly; this means surgery took less than half proposed time. We were told something we have always known, but love to hear, “Evan is a strong young man.”

We do not know the implications of such a rapid reconstruction and will likely find out in the coming days, but we are hopeful that things just came together in a divine way. We have also been told that Evan is in control of his own destiny for discharge. When the pain is managed and he tires of hospital food, not necessarily in that order, we will be able to go home, possibly as soon as Sunday.

Thanks be to God.

More details to follow.

Halftime score: Evan 2 Melanoma 1

The mother of the chief author of this blog has requested less medical speak and more plain English. Here goes. Midway through this challenge, the first surgeon, Dr. Olilla, has just spent a few minutes detailing how Evan is doing, what was found, what was done, what is going on now.

In order:

Evan has done well with this first part of the procedure and is tolerating things well.

Multiple lymph nodes in the left armpit were indicative of some tumor metastasis. The extent or current activity will be determined by pathologists.

The primary tumor was excised down to his rib cage taking all the muscles and tissue from the outside to that depth with wide margins in all directions. The entire left arm pit lymph network and lymph nodes was removed, and a drain to prevent lymphedema was placed.

Reconstruction will begin as soon as the plastic surgeon, Dr. Van Allst determines the plan of action upon looking at the defect (great big hole to be filled)

None of this is unexpected, none is easy to hear. Evan is in God’s hands via the hands of surgeons and nurses, and we reside at a place of personal peace not possible without the many prayers being offered on our behalf. As we say, “God is good, all the time; and All the time, God is good!”

More news in a couple of hours.

In this beginning . . .

There was hug; a deep soulful pull. It was an attempt to meld one body into another, the very essence of fusing heart mind and soul of one person to another. First with his mother who held him tight, and then with his father even tighter, and finally with resignation on his face and a tear in his eye, he sat down in the transport chair and was wheeled back into another operating room. And this is how it happened at 3:15 pm on a damp and dreary afternoon of Friday, the 13th of March, 2009.

In the hollow emptiness of the waiting room, mother and father held each other as the tears flowed. Consolation was impossible, never had they seen their little champion with a heart the size of Montana share as much as a frown let alone a tear before a surgery.

The beauty of an early surgery is the lack of time available for anticipation. In this instance, the length and complexity demanded a later start so that other cases would not be bumped if Evan’s took extra time. The reality is that Evan’s time was bumped to accommodate emergency operations. Asked not to eat since midnight, arriving at 11:45 am, and then having to wait until 2:30 to get ready allows two primary thoughts to spin inside the mind: 1. This will not go well. 2. I am so hungry; I would risk aspiration pneumonia for a burger.

Neither is an option, and the surgical team is the epitome of professionalism and the essence of great bedside manner. We will update more as we get more information and the time to put finger to keyboard.