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.

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.

Dates, Anticipation and Anxiety

Through the many months that this blog has covered, it has aimed at capturing not only the events surrounding Evan’s battle with cancer, but also to allow a small window into the emotional and spiritual aspects of a family living with a child battling this terrible disease. There are gaps in this narrative as we have struggled with the implications of certain specific situations and words could not be found to best express anything, let alone the details of the challenge at hand.

Such a gap began again a little over a month ago when Evan concluded his 3rd round of chemotherapy. We shall attempt to fill in that gap.

For seven months from December ’07 to June ’08, we were blind to our son’s condition. As is often preached in business seminars around the world, “You don’t know what you don’t know.” And we didn’t know, and we were to a certain extent blind but searching. It was a stumbling process of snippets of information that were cobbled together using resources to interpret resources and seeking a medical school knowledge without the benefit of having attended medical school.

In July ’08 we faced the decision of committing to life threatening/life altering surgery or committing ourselves to an exhaustive search for answers to questions no parent should ever have to face: What is this tumor? How much time do we have to find out before we potentially risk the life of our child? Will this kill him?

It turns out that an exhaustive search is a limited process when you are dealing with a subject that no one has ever studied, probably because no one ever conceived that Evan’s situation would ever arise. So as we concluded our search a scant 4 months after it began, we determined that there were no other options than to ‘kill’ the tumor before it had any additional chances to develop immediate killer instincts toward our son.

At UNC we were shown the roadmap: Chemo – Surgery – Chemo. It all sounds simple enough in theory, then the rubber meets the road. Chemo is the process of poisoning the body in the hope that the cancer will die before the patient. Patients who ask to keep their last empty bag of chemo drugs for posterity are denied on the basis that poisons of this strength cannot be allowed in the public realm for fear of killing innocent bystanders. The surgical option was held in reserve.

Chemotherapies are target driven and fit into very specific anti-cancer properties of equally specific cancers, knowing that no one knew what Evan’s cancer is, it was unlikely that chemotherapy would work, but in an effort to avoid the next step, it was worth a try.

Evan’s chemotherapy cocktail showed some surprising early promise as the mass changed in shapes and consistency in a short time window, but the MRI just 2 weeks ago showed that the mass had not substantially changed. This was not terrible news; terrible news would have been that the chemotherapy had actually stimulated invasive growth and that things would have been considerably graver.

So when the MRI results came back there was both relief and a distinctly nervous anticipation. 2-3 weeks doesn’t seem like such a long time, until you think that it could be over 1,800,000 seconds. And in each second lies all the thoughts of fear and despair. There is an old Chinese saying, “Anticipation of death is worse than death itself”, but it is not death that is at the core of our thoughts during this time, it is the foreknowledge of pain. Pain not imagined without a point of reference. Evan has been here before; the only difference in this surgery will be the extent and depth of excision. This will necessitate considerably more extensive reconstruction and the overwhelming fear is over any skin graft donor site.

Skin grafting is akin to the modern day equivalent of being skinned alive. The description by plastic surgeons is that it is like a strawberry on a leg or a skinned knee. This does a grave injustice to the true sense of pain that this technique visits on the patient.

With no news from the hospital at 2 weeks from the announced 2-3 weeks to be scheduled, the degree of anxiety increased logarithmically with each passing moment. And then a date was announced, Friday, March 13, 2009. We cannot speak to the level or intensity of the emotions that will continue to flood our hearts, minds and home; but it would be safe to say that there will be a sleepless night or two in the coming fortnight.

As always we thank you from the bottom of our hearts for the continued prayers, kind words and thoughts directed toward all of us and especially Evan as he deals with the internal battles of body and mind in these coming days.

On or Heroes Personal History front, the end of chemotherapy mean that Evan was able to receive his Arrow of Light from Cub Scouts (This is the highest ward that a Cub Scout can receive, and the honor is earned by working through a series of different educational and situational tasks over the course of 2 years study) and was then able to crossover from Cub Scouts to Boy Scouts with his friends. Evan was able to do this all by the slimmest of margins, 5 days, as he needed to be both 10 and have earned his Arrow of Light to achieve this milestone.

For all who have followed the Science Fair Saga: 2009 Edition, Evan’s project has been honored with representing Wake Christian Academy at the State competition in Wilmington, NC on April 23. The goal after surgery will be to be ready to attend and present his project there. Many thanks to all who helped with his project this year, especially Todd Christopher and Chris Rogalski of TPC Auto Wash Supply in Allen Park, MI who at Evan’s design and request manufactured a custom display stand for the computer.

And now the other shoe drops!

After 3 course of chemotherapy, the tumor has not substantially changed in outward dimensions. The surgeon says it feels ‘spongier’ and on Tuesday Evan will have an MRI to determine the internal dimensions. Bottom line is that the chemotherapy is not having the desired effect and that now is the time to operate. Even though this was anticipated, and even though all avenues have been exhausted in researching this mass; it is still a shock to hear ‘wide margin radical excision with axillary node dissection’
In laymans terms this means that the surgeon will take out the mass, all the surrounding tissue with even the remotest of possible involvement, and also take the lymph node pathway(drainage system) to an area where there is no overlying birthmark. As the lymph system is the primary route for metastasis, by taking the lymph pathway to an area where there is no overlying nevus should render a lymph node without melanocytes, one of the calling cards of metastatic melanoma.
Surgery is being coordinated between Evan’s primary onco surgeon, Evan’s pediatric plastic surgeon and the UNC children’s hospital OR suites. Dr. Olilla is an adult melanoma surgical specialist which is why he has been the key member of Evan’s treatment team because of his experience. After this surgery he never wants to see Evan in an operating room again. However, as a surgeon on adults, he does not have OR privileges at Children’s Hospital. Dr. Van Allst is Evan’s Plastic Surgeon; and is tasked with reconstructing what is left after Dr. Olilla is complete with his tasks does have those privileges, so there is some coordination in the works. This is combined with the information that the surgery cannot happen within 4 weeks of chemo, and we have target date of – 2-3 weeks for surgery.
This development must be put into the right perspective. It is often said that minor surgery is what other people have. In this case, even that aphorism is understated. Evan as usual took the news like a champ, his one question behind closed doors was if it would hurt as bad as last February’s surgery. We don’t do lying very well, and the skin graft donor site last year was extremely painful for a couple of days. And the truth is ‘yes’ it will hurt as badly as it did before. Those are some of the toughest words to share with a child.
In a more casual note, Evan has qualified to take his computer to the NCCSA Science Fair in Wilmington in late April, and he should be physically ready to present. Tomorrow is his birthday party to celebrate his 10th birthday on Monday, and part of the festivities tomorrow is the Cub Scout Pack Pinewood Derby. Next week he will be able to receive his Arrow Light which is a very prestigious honor in Cub Scouting and signifies a great deal of work accomplished. On the same night he will crossover to become a Boy Scout at the Blue and Gold banquet. And one of the higher notes of positive events is that chemotherapy is now on hold until further notice. That’s the news of the moment, we’ll report more when there has been a chance to digest the details and we get some concrete scheduling.
PS. Evan’s mom, Lizy, really looks in her element as the new Head Athletic Trainer for the Carolina Railhawks USL1 pro soccer team, but that’s another story.