Tuesday, October 20, 2009

And the Other Shoe Drops!

Each time my fingers hit the keys to put together a post it seems tougher and tougher to find the words. Clearly words and I are not strangers; but capturing the moment, establishing the essence is often difficult if not impossible. Such is the reality of this post. Evan has had cancer, Evan has cancer, and Evan will have cancer in the future.
In this latest battle, surgery cleared margins all around the masses, but the infilitrating tendrils reached through the muscle, beyond the fascia and wrapped themselves in the fat around the 11th rib. This is beyond the edge of the surgeon’s reach, it is into very dangerous areas. The war is reaching a crescendo. Even though we found these new masses quickly, it clearly was not quickly enough.
What does this mean? It means that bad cells were left in a place where they are not likely to receive the nutrients necessary to grow and as a result will likely die in place. Because of the placement of the cells and the lack of access to nutrients, it is also a bad location for chemotherapy. If it does grow again from these cells, it will be concealed beneath the layers of skin, muscle and connective tissue between the rib and the skin. If it does grow again, it will be closer to Evan’s solid organs than it has ever been. If it grows again, there is no lymph defense system between it and his central blood circulation. Left some behind, likely, likely, if, if, if. Not particularly encouraging words, not the words you want to hear
Where do we go from here? Wait and watch! Be vigilant and be prepared. Scan in 6 months.
What have we gained? Time. Time to love. Time to learn. Time to allow immunity to gain a foothold. Time for prayer, and time for peace. Time to reinforce hope. Time to encourage others. Time to plan for our futures. Time to quantify the love in a hug.
We will always have time for peace, that internal place of sanctity granted by the very presence of our creator. For if we do not create and take the time for it now, we will have an eternity to wonder why we didn’t.
And how does a person quantify the love in a hug? We’re not quite sure, but we know that Evan gives the best. And until you can quantify the love in a hug, and show us someone with more than Evan’s, we defy you to find better.
What next? Well for Evan it is back to school today, no time like the present. So with his 6 inch drain line out on Monday, a 10” incision from his spine to his side, and a slightly twisted gait from the tight left sided muscles, Evan will be walking down the halls of school today. We asked for ‘body guards’ and have ordered a sweat wicking armored (a flak jacket assembly, looks like the Master Chief from HALO) t-shirt we will get him back to ‘normal’ 10 year old activities as soon as possible. But surely we tell you that courage has a new name today, and with a resilience and strength of Kevlar reinforced carbon composite plating, it must be known as Evan.

Tuesday, October 13, 2009

The Good, the Bad and the Ugly!

Up at 4:30 a.m.; out the door by 5:00; Arrive at hospital registration at 6:00. Waking up with smiles and daddy clowning. Pre-Op, Drs. and Nurses – Oh my! Good bye hugs and tears for fears. Into the OR for 7:30, and begin surgery by 8:00. 8:30 lead surgeon talks with parents and shares positive details and discharge instructions. 9:00 am out of OR. 10:00 waking up for 2nd time, discharge requirements and medications. 11:00 am back in the car and home by noon. And since then; sleep, smiles, nap, medications, TV, nap, medications, food, moving around, computer, medications and sleep.

General: God is good all the time, all the time God is good! Prayer warriors are indispensible. Evan is the definition of courage. Grace should never be taken forgranted.
Good: Attending surgeon, The Wray family, Tim Goodale and Granddad
Bad: Anesthetist, CRNA and Pre-Op nurse, Lymphedema
Ugly: Post-Op nurse, Adult rules for pediatric patients

The Journal:
It has not passed my attention that this blog has at times been more than a little esoteric. It has been an outlet for a deeply troubled father and a tool for sharing some of the more difficult realities of travelling a life journey with a child who is facing the battle of their life: literally. In no way has the trip been easy, and while we would never wish this reality upon anyone else, we have come to grasp that how we traverse these obstacles has presented some of the readers with concepts of hope, joy and peace in a way that they may have never thought possible. Perhaps it is you who we have been able to shed a little light upon your path.
The post immediately before this one is a brief look at an instant. A ‘moment’; a single point; a point of ‘pain’ on a sphere of possible pain, some points seemingly more painful than others.
ESOTERIC SIDEBAR: Evan’s sister Morgan is taking Geometry this year and all analogies seem to take on mathematical contexts. In this instance, we look at a sphere. A circle is said to inscribe a single plane in an infinite series of points connected in an continuous arc equidistant from a central point. A sphere is a series of points that number as a product of an infinite number of points of one circle of one plane multiplied by an infinite number of planes describing an infinite number of identical circles. And so it is that the number of possible ways a person might feel pain is infinity x infinity x infinity.
EXOTERIC APPLICATION: Friday night Evan was the guest of Eric Staal and the Carolina Hurricanes at an NHL game promoting Hockey Fights Cancer. In our suite was a young girl Evan’s age who we met when we first started at UNC. Her fight is not going nearly as well; she has lost her hair, her left arm, and yesterday had surgery to remove tumors from her lungs. Monday I met briefly with Evan’s school’s administrator who lost a dear sister in law and mother to a post operative complication 3 days after a ‘minor’ procedure. Any pain we might feel is but a single point on a sphere of infinite points that one person’s pain cannot be compared to another’s but rather the one in pain needs prayer, love and encouragement based in reality.
THE GOOD: Dr. David Olilla is a cancer surgeon who specializes in adult melanoma resection. It in his hands that we have placed Evan’s outcome, it was his hand that held each of the doors open on the way into the operating room as he walked beside Evan, and it is his hand that he extended to hold and comfort Evan before anesthesia took him beyond the conscious world. The work is aggressive for an aggressive disease. The tumor found just 3 weeks ago had quadrupled in size and had developed a nearby sister. The operation took both masses, and surrounding layers of muscle and fascia. The closure involved bringing skin from below up to the incision line and placing a drain to reduce swelling.
To all who have offered prayer and continue to keep us in their thoughts and prayers; please find our appreciation and gratitude for all you do in these following paragraphs.
Heather and David Wray, and there three amazing children, Ethan, Claire and Mary have been a tower of strength in prayer and purposeful support. I could write pages and pages about their strength and friendship; or their point of pain as they prepare to fight against neurofibromatosis; but today let me just say thank you for a timely wonderful meal. Tonight Heather whipped up Chicken Tetrazzini and Claire threw together some tasty muffins. Mmm mmm Good!
Tim Goodale is a Special Forces medic serving in Afghanistan. Over 10,000 miles away, 9 time zones apart, and he used his precious phone time to call and check on Evan. He has been there 4 months, has 3 more to go, misses home and his fiancé Katrina more than words can say; and out of the blue a voice ethereal from the middle of Asia brings a measure of love and humility that reminds us how important relationships near and far are to our health and perspective.
And then there is the love of family. How do you say thank you to a father and Granddad? Today it was taking Morgan to and from school. Other days its picking up a grocery or two; and then there is the spaghetti dinners each week. And you would be hard pressed to find a more dedicated and committed prayer warrior.
THE BAD: In March as part of the surgery Evan had left axillary lymph node dissection (removal of the lymph system from his left arm pit) as a result he should never have an IV in his left arm or his blood pressure measured on his left arm. At some point this morning we slipped from patient advocate into full parent mode; we had shared with the pre care nurse the ‘no left arm’ procedures; the Anesthetist said she was familiar with his history; Evan had a prepped port-a-cath, and yet in post op we were horrified to see a swollen left arm and an IV start in his left hand. No harm, no foul, but a bitter reality that you can never let your guard down. Too many assumptions, too many things that might go wrong.
THE UGLY: Caregivers and rules not geared toward family and patient support of children as patients. “If you don’t pee in the next 30 minutes I’m going to have to catheterize you.”, “Only one visitor can be with the patient in recovery, it doesn’t matter their age, other patients might see you receiving favoritism.”
OVERALL: We will eagerly await pathology of the masses, we will maintain a highly vigilant attitude and revise our tracking process, we will hug a little tighter and love a little deeper. We will heal and we will take physical therapy. We will give glory too God for this day, for this moment, and we will seize the day and live for this instant. We will pray for friends, family, acquaintances and strangers who maybe experiencing their point of pain on the cancer sphere, and we will thank you for your patience, love and the peace you bring to us through your thoughts and prayers.

Waiting on the moment . . .

Having delivered Evan to the hospital for a 6:00 am start to today’s adventure in medicine, and now while waiting for the page to return to post operative recovery; I am contemplating the ‘moment’ The ‘moment’ is a multifaceted mile post on our journeys through life. This morning it was that instant where Evan was separated from us heading back to the operating room.
Up to that instant the entire process had been part of an academic medical exercise; after this instant is the reality of surgery, pre-operative anxiety and post-operative anesthesia induced fog and pain. The instant is marked by deep longing hugs where hearts meld together as one and a steady drip of tears marking the hidden and unspoken fears.
And so we wait.

Thursday, October 8, 2009

The Silver Lining. . . Surgery in Six days

MEDICAL: Diagnosis: Recurrent Malignant Melanoma without metastasis. The CT scan revealed a primary mass and an adjacent mass within the confines of the original wide margin border. These two growths sit on top of the left side 11th rib. They do not involve the surrounding fascia on the scan and the scan revealed no distant metastasis within the body but especially to no organs.
Treatment: Local wide margin excision of the masses including overlying skin, involved fascia, muscle and potential the periosteum (bone covering) of the underlying rib.
INSIGHT: When battling cancer there are fewer more clear paradoxes than potential surgery. The silver lining to this battle in this war is that the proposed surgery is the most appropriate course of action at this juncture. The looming cloud prior to scan results is multiple distant metastases with a lousy prognosis. The tension prior to hearing the results was palpable. The relief was equally real, and there was a collective sigh on the part of us; the parents.
The primary good news this time around has been the rapid identification of the recurrence. In the past 10 days, the second mass had become visible; and this recurrence seems directly related to an overall growth spurt. Because it has been caught early, the underlying rib will remain, and there is no need for a skin graft. It will also mean outpatient surgery; waking up and going to bed in his own bed – priceless.
SPIRITUAL: Unsure as to the parts, roles and lines in the plan of the great play, trusting the director and appreciating a prayerfully and thoughtful audience participation.
EDUCATIONAL: Teachers and Administrators: informed, involved and supportive.

Sunday, October 4, 2009

Here we go again!

Three weeks ago I gave Evan a hug good night. His mom, Lizy was in Seattle with her job. In an instant it felt like the wheels on the bus came off at high speed while traversing an icy mountain pass. There it was. A lump where there shouldn’t be one. For those who are on Lizy’s rapid response prayer chain you have known about the discovery but perhaps not some of the details.
With Evan’s help I was able to change the status on my Facebook page to, “Reeling in the reality of a recurrence, Praising God for an amazing summer without worry!”
The 5 days before Mom got home were some of the most difficult times we have faced as a family through this journey. Our strength has been the ability to fill our roles within the close confines of a home filled with hope, encouragement and prayer.
While it was just a lump, and while I am not a doctor, I have been through this scenario with Evan too many times in the past 2 years. Its size, location, how it felt both to me and to Evan told me all I needed to know. What was missing was official confirmation, determination of extent and a plan of action.
I can go no further without answering the question, “How did you deal with this? How did you get through this?” I didn’t. Evan did. His tone and reaction, curiosity and understanding are remarkable.
“What is it Dad?”
“It’s a lump”
“What is it?”
“I don’t know, but I want your Doctor to take a look at it”
“What do you think it is?
“I think it’s something that’s not supposed to be there, it feels similar to before, but it’s in a slightly different location and only a Dr can tell us. I’ll move up our appointment so we can see the Dr. sooner.”
“Okay, can I sleep in Mommy’s turn tonight.” (Mommy’s turn is where Lizy sleeps, inside communication for can I cuddle with you and fall asleep in your arms Dad.)
Then we prayed asking for healing and understanding and safe travels for Mom.
Lizy got home on Saturday morning, her job with the Railhawks keeps us all busy and the Dr’s appointments had been set up for Monday afternoon. Monday arrived both too slowly and too quickly. If you have not followed Evan over time what I am about to share will seem surreal. Who am I kidding, I’ve never seen anything like it before. My son, Evan, all of 10 years old, is having a fully fledged discussion on treatment options for a recurrent melanoma complete with details such as metastatic pathways, hormonal impact upon his current growth spurt and nutritional recruitment by cancer cells.
PLAIN SPEAK: The melanoma has recurred in an area immediately adjacent to a surgical site over and involved in the fascia of his left side floating ribs. Primary treatment would be surgical excision with wide margins if CT scan does not indicate distant metastasis. This would occur sooner rather than later. This new growth appears to have origins in surgery of 2/2007 and is related to a current growth spurt (Evan has grown ~8% in weight in the past 60 days, and the mass has appeared in that time frame. It is a known fact that nevus tissue grows in proportion to general body growth.)
Evan is fully involved in 6th grade and thoroughly enjoying moving from class to class; although the 40# of books to be brought home each night can be a little burdensome (pun fully intended) Music is still a vital part of his life and he just received a new piece for piano, as soon as he gets it down I’ll post a video. If you would like to check out more pictures of Evan, please consider becoming Lizy’s friend on Facebook.
Thank you for your continued thoughts and prayers. This is a long journey, and while we have enjoyed a brief respite, as we travel onward we both desire and appreciate your support.

Thursday, June 4, 2009


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.

Friday, April 17, 2009

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.

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.

Saturday, February 28, 2009

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.

Friday, February 13, 2009

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.

Monday, February 2, 2009

Update 2/2/09

Evan is having a good day today. For that matter the past 8 days have been good days. We measure the quality of the day based on simple factors: presence of nausea, presence of pain, amount of energy and participation in events/activities outside the home.
Each Monday we take a trip to Evan’s pediatrician and have blood drawn for lab work. The numbers are available the following day and we have been charting the ups and downs of various numbers. While all the numbers are important for ongoing life, the chemo knocks the immune system off line for a couple of days and it takes his body time to replace these key ‘fighter’ cells called neutrophils. These cells are the primary component of a person’s WBCs (White Blood Cell). When these counts get to below 500/micro liter Evan becomes susceptible to infections that would require hospitalization to control. With each passing chemo treatment, Evan’s time in the danger zone increases; first round ~1 day, second round ~5 days, third round – we’ll let you know.
With that information as a backdrop; We are getting ready for his next MRI which will be done on the afternoon of February 17. Evan also has a return visit to the onco-surgeon on February 12, and his next round of chemo is scheduled for February 20. The visit with the onco-surgeon will be to review progress of the chemo and determine the next step in his treatment course. The MRI will provide a more quantitative evaluation of the tumor size and its response to chemo (Has it grown/shrunk and by how much).
On the homefront, things are busy. Evan was able to get his computer to school for initial evaluation for the Science Fair 2009, and he qualified for the next round. He continues to work on it, refining, repairing, improving, and correcting. He also attended Legopalooza at the Moorehead Planetarium at UNC, on the Scouting front he is building his final entry into the Pinewood Derby and getting ready to receive his Arrow of Light and crossover to Boy Scouts.
That’s the news for the day; pictures at 11; and right after that another exciting episode of ‘The Lobby Sherrif’

Wednesday, January 21, 2009

The other side of the Snowman

The anticipation of today was offset by a snow storm of biblical proportions, by North Carolina standards, 4 inches. Today we are all sitting in our home away from home, the ‘code’ room of the Pediatric Hematology/Oncology clinic at UNC, but yesterday was a different story. School was on a 2 hour delay in anticipation of snow, so there was hope. Hope is a powerful condition, it carries the hint of success, the taste of victory, the whiff of wonderful; and a child and his sister prayed mighty prayers that school would be cancelled. 6 am school was cancelled, 2 inches of thick wet snow mixed with winds gusting to 25 mph had made the roads so hazardous that there were over 150 accidents in our area.

There is something bordering on a sense of high sinful pleasure when one cuddles up in a warm bed, comforter wrapped around you like an oversized Mexican burrito. Waking is a slow pleasure of gentle rising until one faces a window and sees the fluffy white stuff being wind swept into 6 inch drifts. Two possible emotional responses might be reasonably anticipated: 1. Who’s gonna shovel this @#$%#*! 2. Oh! That should be fun to play in. In the Piedmont of NC there is a ‘liaise faire’ attitude about snow it is born of two realities: A. Someday it will snow. B. We have neither the equipment, experience nor inclination to do anything about it. (It’ll all melt away within a day anyway) The other contributing factor to any lack of action was of course the inauguration of the 44th President of the USA.

Having been absent from this type of weather for three years, one might suppose a degree of wonder about the white stuff. What was expressed, gasps of surprise, slack jawed awe, and a real joy at the apparent miracle that God would not only bestow an additional day of rest (from school) but there was gonna be enough of the stuff to have some serious fun.

The wind whipped additional accumulations into place over the remainder of the morning, and in a post inaugural address revelation, the wind died and the sun came out, Wow! In a moment of pure childhood joy Evan ran barefoot into Snoopy’s Magic Food Room (Rather than feeding the hound from the table, we have established that table scraps may only be fed to said mutt in the screened porch off the back of house. As proof of Pavlov’s work, Snoopy stands eagerly in tail wagging fashion by the back door at every meal waiting for access to his Magic Food Room)

The errant run to freedom was met with 2 realizations: Snow is still cold stuff, even in NC; and that Evan is (In Russian accented English) Strong like Bull and Smart like Book! No, not book smart, smart like book! 5 minutes later, dressed with shoes, sweater, hat and shoes, our intrepid cold weather explorer set foot into the frozen tundra of the central highlands of North Carolina. 5 minutes later and dad was shoveling the driveway in NC shoveling attire, and Sissy was modeling the latest skiwear for the NC State Ski Team.

The peals of gleeful laughter echoing from the frozen edifices of the neighborhood only paled in comparison to the ear to ear smiles and rosy cheeks of the children having snowball fights, sledding, and making snow cream. When it only happens in a blue moon, the need to experience it all is overwhelming.
Snow Cream is a NC specialty for snow storms; take a 2:1 ratio of cream to sugar, add 1tsp of vanilla and mix in fresh snow till it develops a solid consistency. The microscopic nature of the snow makes the desert absolutely amazing. Thanks to our NC neighbors who introduced us to this treat. For never getting snow, they sure have the best recipe.

As the day ended, as you can see the sunset was spectacular. And the mariners saying came to mind, “Red sky at night, sailor’s delight; Red sky in the morning, sailor’s warning.”
Today began with the potentially treacherous drive over icy roads to the hospital. We left early and traveling mercies saw us arrive with the perfect time to spare. As pre-medications (changes were made to protect the innocent) were lined up like students in line for lunch we all (Doctor, Nurses, Rec therapist, parents and Evan) waited in almost breathless anticipation of what would happen next. Even when you know its coming, the interactions are difficult to address. The sense of muscle discomfort knows no remedy, no drug can make it go away, no relaxation technique will shed the burden, no tissue is big enough for the tears that fall. Only a drug induced sedation will calm the nerves of all involved. The vivid nightmares in coming nights will be talked through and cried into the shoulders of mom and dad. This we can all deal with, not the leg ‘cramps’ that know no end and have no respite.
As always, your prayers are deemed essential and the warmth of your thoughts a comforting blanket into which we might curl up into while resting by the warmth of a fire stoked in the hearth of our family’s love.

Saturday, January 17, 2009

Pixie Dust, Fairy Magic, and Plastic Blocks

For pictures please cut and paste to your internet browser- http://www.facebook.com/album.php?aid=6686&l=27094&id=1616041978
I would tell you a fairy tale of a boy from a land far away. Once upon a time when he was but a baby his Granny placed a small present in his stocking for Christmas. Inside that colorful paper was a colorful little box, and inside the little box there was a package of small plastic pieces in the brightest reds, yellows, blues and whites. Some graphics oriented instructions and a little effort had seen piece placed on piece and imagination blossomed into both a broad smile and a deep sense of satisfying peace. From that point on that little boy never met a LEGO he didn’t like or want to build, and in the safety of construction he found both a joy of purpose and achievement, but more importantly an escape from the pressures of every day. Pressures no child should be burdened with; pressures no adult would wish upon their mortal enemy; pressures from which there is no respite till a winner is declared. While fighting this battle his only wish, his only focus was to get to the place where he could build, plan and retreat with Legos all day long. That place was Legoland. There are only 4 such places of plastic wonder in the world: Windsor, England; Billund, Denmark; Gunzburg, Germany; and San Diego, CA. But how would he ever get there? Time was tenuous. Physical health was always a potential problem. It was over 3000 miles away; across a continent, past forests, through rivers and deserts, not to mention over snow capped mountains. All this stood in the way. It looked like it may never happen, or worse, that it might happen but only as a hollow victory as the night closed in on our young hero. Someone once said, “Pray as if your life depended on it, and work as if your life depended on it.” So he prayed and he prayed, and his parents prayed and prayed, and his sister prayed and prayed. And he worked on building his LEGOs, and his parents worked on connecting people and ideas together, and his sister worked on annoying him as much as he deserved.
As this is a fairy tale this seems like a good time to put a fairy in the story.
8 months after planting the magic seed, a wish granting fairy called Vanessa from the place called Kid’s Wish Network. 8 months is a long time for a 9 year old. 10% of life has passed you by, surely the wish, the dream, the very idea would have changed. Perhaps it would be to see an episode of Hannah Montana or a trip to Disney or the mountains to ski. Not so when your dream is held so closely to the heart, not so when the very fibers of your being are dragging your eyes toward California at every free moment. And I suppose in a twist on the Fairy tale, Vanessa called on 7 of her magical friends to make this wish change from a dream to a goal by setting a deadline on that dream. And those of you who know will understand when I say that the fairy did the work, but God provided the love and the providence to take that goal and make it a reality. 7 days before the planned wish trip, the little boy was just home from an unplanned 2 day stay in the hospital ICU from a medication reaction, then his blood counts were just on the high side of the border for travel (really low for the average young man – but this boy is nicknamed “RubberBoy” for his resilience and bounce back ability.
And this is how it was done and how those 7 magical friends helped make that little boy the happiest person on earth, if only for a moment. It was a moment that will be lived in and out of every day from that moment on.
The first magical friends were the pilots, attendants, gate personnel and baggage handlers of American Airlines. The finest professionals made everything as easy as possible. A pillow, a blanket, smooth take-offs and landings, the prompt arrival of bags, all this and so much more. I suppose we expect them to do all these things and more each day, but for the boy in the middle of living his dream, every courtesy was afforded. No funny looks at masks or missing hair, just smiles and lots of help. This magical team took him to his dream and escorted him home so that even as sad as he was to leave, they left him smiling and inquiring of his next trip to the land of his dreams.
As American Airlines delivered the boy and his family into San Diego, the torch of support was handed to Hertz as they provided the gleaming Maroon Steed of Travel to the boy’s family. The trusty transport was a minivan big enough to take not only the boy and his bag; but the rest of the family, luggage and he swore he heard his father question the need for an Iron and Kitchen sink, but that could have been the Pacific Ocean lapping against the shore of the harbor wall or was it Mission Bay. For 5 days this valiant mount carried the boy from one end of San Diego County to the other, back again and across the county as well.
As the boy was driven up I-5 towards and into Carlsbad, he came face to face with the place he would call home for 5 nights. The luxurious La Costa Resort and Spa was only exceeded by the grace, courtesy and service provided by the staff (A warm glass of milk and three of the biggest cookies on arrival). It was only here that the boy grew mildly distracted from his quest, he wasn’t sure if it was the early morning dip in the steam shrouded heated pools, or the 3 x 50 inch plasma TV’s or the incredibly comfortable King size bed. His mind was refocused as he became hungry. His hunger was driven by a deep seated drive to accomplish his lifelong dream, and hunger from not eating because he was playing so hard.
Every Fairy Tale should have a twist or two or three. For the little boy the twists came in seeing family and friends while in the area. Time was set aside to meet his mom’s Aunt Myra, Uncle Dave and cousin Dave and his wife, Jocelyn, on the first night. The second night brought a reunion with Nana and Poppa who had travelled from Asheville, NC to San Diego to visit friends in a most serendipitous meeting. Then on the third morning was a breakfast with his “Big” brother’s sister, Sarah. Like a great meal, each meeting enhanced the flavors and experiences of the whole glorious trip. Wow!
It would be easy to suppose that when you live in the land of childhood dreams for any length of time familiarity might breed contempt, or the weather was so unseasonably cold that the staff was frozen, or most likely the staff just paled in comparison to the 41 brightest of bright shiny ABS plastic bricks. None of that mattered. There was a 38 step action plan/agenda to ensure fulfillment of every aspect of the little boy’s dream. As sure as one might be that the Pope is Catholic, one could be reasonably sure that nothing could top the first day in Legoland, but you might be wrong.
After the wish was completed on Day 1, what was left to do? Get some marvelous pizza at a magical friend’s place, and so the little boy, now sated on LEGO for the moment almost fell asleep in his pizza at PRIMO’s in Carlsbad. He was waited on like a king, and the food was delicious for those that remember it. 3 chefs and 3 wait staff kept things moving along, and the boy’s father caught the middle of the BCS National Championship game on the TV in the corner of the room.
Day 2 saw the completion of the agenda, and as things were winding down in Fun Town the little boy had the fires of his imagination stoked and fueled as he went through the LEGO Factory Tour. After this little stroll through manufacturing the little boy settled into Pick-A-Brick. Name a color, they have it. Name a piece, they have it. And since they were selling them by the pound, why not get a pound or two. While this seeking and sorting was going on, a little bird had a little word with a very special friend. Renate, a lifelong LEGO fan and long time employee from Germany, heard that time might be short for the little boy. Renate then exceeded all possible wishes and dreams; she took the little boy back behind the scenes. She showed him how the LEGO’s are made, then she let the little boy make LEGO’s, then sort the bad ones out. Then she helped him make original LEGO statues from real LEGO ABS plastic. She put the real human face, the embodiment of love, excitement and imagination back into the plastic. All of a sudden the dream that had been, became the dream that was reality and laid out a new dream for the future. Happiness and Peace found in connecting cold pieces of colored plastic was now joined with the warmth and huggable Love of a friend who made the dream-into-reality become the reality-into dream, again.
Dinner after the second day at Legoland was hosted by the fifth of his magical friends, the Rockin’ staff of Ruby’s Diner a 50’s themed burger joint. The burgers were huge, the shakes were bigger, and the clown animals and paper boxcars made the evening complete. A evening constitutional through the mall, and a handpicked orange off the trees at LaCosta allowed the day to wind down slowly and for one set of emotions (Joy, glee, WOW!) to be switched for another (Sadness, gloom, despair) as it felt that all reason for living had been sucked out of the little boy as he had no more dreams to seek out.
Seaworld was our 6th magical friend, but even the splash of 8000lb Shamu the Killer Whale could hardly bring a smile to the lips of the exhausted and leg weary young man (little boys have not had to face the fading of their dreams into the sunset of by gone days) But as the sun soaked in, and the Santa Ana winds began to pick up, there was lunch. Breakfast is one thing, but a lunch buffet will really add some energy to your day, especially when you’re eating less than 10 feet from where Shamu and family are also eating. Add in a little feeding of Sea Lions and Dolphins and you have an exciting day. Walking under sharks in a glass tunnel will also provide a certain exhilarating bounce to your step. Just what the doctor ordered to take the edge of a slightly tired and down day before heading back to home.
The young man’s last dinner while on his trip was hosted by his magical friends at Chili’s in San Diego. The food was great, and the service better. It was just the right kind of quiet end to a quiet day after the very emotionally charged three preceding days. If he hadn’t needed to get up at 3:45 the next morning, the party would have gone on for hours.
Dark and early (Bright is not appropriate at 3:45 am) the next morning the young man said good bye to his friends first at La Costa, then dropping his trusty steed at Hertz, and then began the steady journey with his first magical friend become his last as he boarded the American Airlines flight from San Diego back to Raleigh.
He may have left a little boy with his eyes full of wishes and dreams, but he returned fulfilled as a young man. Now his eyes are filled with possibilities and goals; always he looks forward with hope. Now to add to his hope is a taste of dreams come real that will fuel his drive forward, thanks to a good fairy named Vanessa from the land of Kid’s Wish Network.

Tuesday, January 6, 2009

Legoland or Bust!

Like an adult in Polar Express, I am having a difficult time comprehending the attraction of a theme park built around plastic building blocks. Ah! If only the bell would ring again for me. But this isn’t about me, it is all about Evan and his wish. Monday we received the go ahead (Evan’s blood work was okayed) and thanks to Kids Wish Network and their sponsors we will be leaving for San Diego in the morning. We promise to get lots of pictures, and Evan has generated a 38 point agenda for our time in the park.
Your prayers have us floating on a sea of blessings, and the strength and peace you send out are received like water on the parched summer grass of the Piedmont of North Carolina. Without this spiritual sustenance we would be unable to take this trip. Thank you, each of you is a blessing to us from God.