Tuesday, March 17, 2009

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 <><

Sunday, March 15, 2009

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)

Friday, March 13, 2009

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.

Saturday, March 7, 2009

Metastasis and the Plan

Metastasis is the word most feared by cancer patients and their loved ones second only to initial diagnosis word ‘cancer’; and the word ‘death’ At Evan’s pre operative appointment this past Thursday we received the copies of the MRI in November and the repeat test in February. In one brief sentence , tucked away, almost as an afterthought were the words, “increased thickening of the lymph node in the left axilla is consistent with metastasis”.

Where do we go from here? How do we deal with this newest development? How long has he got? On top of these questions were the baseline questions for Evan’s upcoming surgery next Friday: How long will the operation take? (We don’t know, excision will take approximately 2 hours, reconstruction – we just don’t know, we don’t know what we’ll be dealing with) How long will he be in the hospital? (We don’t know, depends on his pain management and how he reacts to the operations) How much will this cost? (We don’t know, depends on how long the surgery takes, and how long he is in the hospital, and how good your coverage is, and how much of the deductible remains to be paid)

You might sense a great deal of unease, or a sense of failure to either communicate or of baseline knowledge. I suppose on the part of the medical staff, they have confidence in their skills, but the mysteries of Evan’s body and his disease process are baffling to them. We have a faithful confidence that God will see us through no matter the outcome. But let me be more specific lest you believe that we are blind to the realities of the situation or that we are swimming through this trial with rose colored glasses. Each of us; Evan, Mom, Dad, and Sissy are deeply confident that we are not in control of this situation and that our response to this situation is how we are to demonstrate our faith that God is in control and that His purposes will ultimately be for our good.

Evan remains the strongest of the family and is not idly elevated to the status of hero as he has faced and continues to face the greatest challenge anyone in our immediate family has addressed. He has declared that death is not what frightens him, he knows that he will be in heaven. His fear is of the donor site for any skin graft, the pain of which is akin to being skinned alive. He has shared that his anxieties have lead to daydreaming of dying on the operating table in the middle of the operation. And given the day and date of the surgery, (Friday the 13th), he as made us promise not to handle black cats or walk under ladders, not to say anything about mirrors.

So where exactly does this new revelation leave us? Actually, it doesn’t change anything. We had a plan: chemo – surgery – chemo; and the plan always called for the removal of the lymph node in question. As a friend told us when they heard about the impending surgery, “It’s too bad that the first round of chemo didn’t work.” And while this is true, the plan remains intact; the only thing that has changed is the challenge to our resolution to see it through to the end of Evan’s illness.

With all this shared, and our hero preparing to lay himself on the altar of modern medicine and under the surgical knife, we would like to leave you with a reference that has taken on new meaning for all of us: Genesis 22:3-13.

God’s many richest blessings to all who have read this entry and this blog from beginning to now. Till we report after surgery, shalom, peace y vaya con dios.