FEAR!

“All we have to fear; is fear itself” – Franklin Delano Roosevelt- Fireside chat – midst of the Great Depression

“Ye, though I walk to the valley of the shadow of death, I shall fear no evil” – Psalm 23:4

What is fear? We all have felt it. It is the deep sinking knot in the pit of your stomach. It is the cold clammy creeping sensation of unanticipated unsought solitude. For each person it’s different. Perhaps it is the sense of terrifying height atop a cliff wall, or the sense of unscalable depth at the bottom of a bottomless hole. Stephen King the master of many a fearful mental image has written that it is his ability to write down his deepest fears that has brought him freedom from fear; so here are some fears that have floated unspoken through the hallways of our home these past few weeks.

For Evan it has been the fear that he would die; fear that a second unanticipated procedure would either end his life prematurely, or that the cancer might overwhelm his entire body during the time he was asleep for the operation. It has been the fear of IVs, of pain and discomfort, the fear of not being able to grow up and fulfill the dreams of an eight year old. It has been the fear, that if he shows his fear he will cause his parents additional anguish. It is an unspoken thought that he may have committed some unknown transgression that he is being punished. All of his fear has no foundation, all this fear has no rational basis, all this fear that has been borne as a weight of self determined isolation. It is profoundly sad, and heart breaking, to observe a normally vibrant and effervescent child pass through this valley. But he has hope.

For Evan’s sister it is her potential loss. It is the depth of despair brought on by a lack of knowledge, the awareness of whispered conversations. It is held in a heart filled with compassion that cannot find the right avenue of expression. It is held in the desire to generate attention seeking events so as to draw the family to activities and spectacle that will move the focus from death and illness toward light and life.

For Evan’s grandfather fear is held in the knowledge of 83 years experience. That life is not fair. That people die. That children can and do suffer. That the power found in and through prayer, while profoundly strong, can leave us with the hollowness of our minds and bodies ravaged in this world.

For Evan’s parents it has been a gamut of thoughts and a gauntlet run from moment to moment since a diagnosis was confirmed, then a scan returned negative, followed by a recommendation for surgery that seemed to be unnecessary. The core of Evan’s parent’s fear leans toward post-surgical issues. What will be the extent of physical limitations? How much muscle will be taken? What will be the long term physical challenges?

The fears of the parents are remarkably different than those of the other members of the family. Fear affects each person individually, running rampant in isolation, stamped out within a unified community. While the cancer is real, this operation is not so much life and death, but rather a tool of confirmation – “we got it all and this is to ensure that fact” The doctors are great and the staff is better.

Fear, like sin, does not operate in the light, it prefers darkness and solitude to really function well. Today we met three beacons of light at Evan’s pre-op clinic visit at the Duke Children’s Center. First we met Ms. Bridgette, a nurse practitioner. She is the anesthesia team liaison. This past year she was part of a mission trip to Sierra Leone, and has a wonderful sense of humor. She had us quickly laughing as she asked questions and shared all the details surrounding anesthesia for surgery. Ms. Bridgette then introduced us to Ms. Darcy.

Ms. Darcy is a tour guide for children heading toward surgery. Ms. Darcy spent over an hour giving Evan a tour of the Surgical Suite; she took us from arrival to waiting room, from waiting room to pre-op, then from pre-op to surgical prep, from prep to operating room, and from operating room to recovery. After the tour she took us back to her office and took Evan step by step through his entire procedure spending extra time on exactly how an IV is started (Evan’s most focused fear).

After we finished our visit Ms. Darcy, we met Ms. Laurie, a social worker connected with the pediatric oncology team at Duke. She had heard a lot about Evan from Dr. Greiner and wanted to make herself available to us to answer any questions we might have. After 5 minutes with Evan, he had another friend who loved hearing about his happy memories from his trip to Kenya.

Evan’s day started out with an anxiety level of 7, and thanks to the light shed by his new friends, it ended at a level of 2. From his parent’s perspective, Evan went from quiet and pensive, back to a very relaxed and rambunctious 8 year old boy. All boy, all the time; just the way we like him.

We need to give a special thank you to all you who have kept Evan in your thoughts and prayers; to those of you who have called with a thoughtful word of understanding, or given experienced counsel. We have felt the real support of your prayers. While there are times when we have to walk this road alone, your support sheds light on our path, and your love encourages us to not despair but to live this life in abundance.

Evan would like you to read this psalm. He would like you to see how the words are so beautifully put together to capture peace, fear, strength and hope. Whether you ascribe to Evan’s understanding of origin of the psalm, it is the ability of the writer to convey the images in a way that transcends the bounds of organized religion. Truly children know God in their hearts better than any PhD can in their head.

The Lord Is My Shepherd
23:1 The Lord is my shepherd;
I shall not want.
2 He makes me lie down in green pastures.
He leads me beside still waters.
3 He restores my soul.
He leads me in paths of righteousness for his name's sake.
4 Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;y
our rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
6 Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord forever.

Answers and a Plan

There were questions, there was a meeting, answers and information were given, and a plan of action was laid out.
In the meeting were: Lizy & Paul (Evan’s parents), Dr. Wechsler – Chief of Pediatric Oncology, Duke; Dr. Prose – Chief of Pediatric Dermatology, Duke; Dr. Marcus – Chief of Pediatric Plastic Surgery, Duke; Dr. Greiner – Pediatric Oncology Resident Fellow. As a friend commented the next day, there was enough brain power in that room to power the QE2 from London to LA.
The Questions with Answers in BOLD
What exactly are you proposing?
Team Proposal (TP): Wide margin excision of the area surrounding the original mass site to add a 2cm safety margin at the surface, and a depth of the underlying tissues beyond the depth of infiltration and scar tissue from the previous surgery.
When? 10, 30, 60, 90, 180 days
TP: Sooner rather than later (1/22/08 Dermatologist visit, 1/31/08 Pre-OP, 2/1/08 Surgery) PET/CT follow Up Scan ~5/1/08.
Where What exactly are you looking to excise? How deep? How wide? What structures?
Surgeon: ~21 cm length x ~4 cm height x Fascia level + Scar + some latisimus muscle
Why are you recommending this course of treatment at this time?
Oncologist: As a precaution to try to ensure that any cancer cell migration will be captured so as to attempt prevent a recurrence. As there is no expectation of a ‘clear margin’ except at the depth of the surgery, using the 2 cm protocol demonstrated to be successful in more prevalent melanomas seems most conservative and most preferable from a patient outcome.
With a negative scan, what is the motivation to excise further?
Oncologist: While the results of the 1/31/08 scan were extremely encouraging, this particular scan is only sensitive down to detecting tumors greater than 1 cm diameter.
What were your thoughts on the articles which were sent to Dr. Greiner?
Oncologist: Fascinating articles of cutting edge science; however, the clinical application of articles has not yet been formulated, and the methods of determining genetic information requires a special post surgical process, not the standard formalin/paraffin wax fixing.
Are you open to a genetic study of the tissue from block 7?
Dermatologist: Due to the restrictions noted above, no. However, since two of the authors of the article on GCN are friends, I’ll call them and see if they’re interested in tissue from this surgery.
Why are we having to ask for information?
TP: Because most parents do not want it, so this is new to us. That said, it is very encouraging to us that you are so active in your advocacy for Evan. Anything you want is there for the asking up to and including our raw data, Do you need a copy of the actual PET/CT scan?
Do we need a patient advocate?
No, They wouldn’t do nearly as good a job, please continue to ask all the questions you can think of, and please bring any further articles of interest forward.
Do you now consider the whole excised mass to be melanoma, even though the melanoma only showed up in one very specific location and only in very limited sections?
Yes, as a precaution, we must consider that as there were no ‘normal’ sections, that the entire mass must be considered to be melanoma, and it is that information that we base the recommendation of wide margin excision.
Evan will be picking up a video camera and putting together a short movie in the near future for this site. A note of thanks that your continued prayers and notes of support are greatly appreciated.

Surgery, Part II?

It’s seems such a short time since we updated the blog. Time has seemingly stopped. New Years Day was truly a new beginning, amazing, joyous; yet we waited for the other shoe to drop. Such awesome news could not be left untarnished. From the first news in November we knew that this would be a long road. And then it happened, January 3, late afternoon. A simple phone call with big trouble attached. All phone calls from doctors are distilled in an instant, the essence and nature is encapsulated. Inside that capsule is all the information that an hour office visit could not cover. On January 3, Evan’s Oncology team shared its next step in his course of treatment – additional wide margin excision of the original site, a surgical consultation had been set up for January 17, 2008.
The team representative was open to forwarding our request for divulging the information and discourse that led to the team’s recommendation. He was also interested in finding out what we had uncovered in our own research. Since that time we received the pathology report from NYU and the team organized a meeting for January 18, 2008.

Having done much academic research into spindle cell melanoma we can tell you a number of important points. 1. Medical Article research is not for those weak of mind, heart, spirit and sight. 2. The typical age range is 65+ 3. The treatments in order of preference are wide margin excision with sentinel lobe biopsy concurrently, followed by radiation therapy and finally chemo-therapy. 4. Pediatric patients in the 10-20 age range have been treated very effectively with high dose interferon (Chemo) secondary to initial wide margin excision. 5. Cancer is a cellular level problem that is derivative from genetic restructuring 6. There are no protocols for a patient Evan’s age with Evan’s condition 7. Radiation is not an option for Evan as it would likely trigger additional genetic abnormalities in the nevus tissue surrounding the ‘site’ 8. Chemo is not an option for Evan due to the likely negative outcome (inability to survive the treatment) 9. Protocols are developed to guide the best outcome for the patient. 10. Each of Evan’s doctors ultimately wants Evan to both survive and thrive. 11. Cancers are insipid, deadly, and unpredictable and they continue to baffle medical professionals. 12. The worldly decisions on Evan’s care reside in our hearts and minds as we bring together our research and the advice of his medical team. The ultimate decisions lie in good hands far removed from this situation and yet as close as a comforting touch, a smile or a gentle word.
Two articles we located and forwarded to the team have to do with the genetic markers associated with melanoma in the one; and in the second, the presence of nodal growth in nevi which mimic melanoma down to the cellular level without behaving like metastatic melanoma.

The pathology report from NYU found 8 distinct and separate cellular morphologies in the tissue samples. Melanoma was found in only one section of one slide of one of the ten original tissue blocks, tissue block 7. The topography of the mass, cross referenced with the original pathology report indicate that block 7 was located through one of the nodular growths which was secondary to the trauma inflicted over Labor Day weekend. Most troubling was the detail that the melanomatic cells were located in the area of mass which had infiltrated the underlying skeletal muscle.
As we write this entry we are assembling a list of questions to be asked. The answers will be digested, ruminated and prayed over, then we will reach a decision on whether we will adopt the team recommendation or if we will seek a second opinion from another team. Our challenges going down this road are that time might allow any remaining cancer cells to reestablish themselves, that a second opinion will render the same course of action, that as the number of ‘knowledgeable’ doctors is so small that personal opinions about the perceived snub might jeopardize ultimate care.

The Questions

1. What exactly are you proposing?



2. When? 10, 30, 60, 90, 180 days



3. Where What exactly are you looking to excise? How deep? How wide? What structures?



4. Why are you recommending this course of treatment at this time?



5. With a negative scan, what is the motivation to excise further?



6. What were your thoughts on the articles which were sent to Dr. Greiner?



7. Are you open to a genetic study of the tissue from block 7?



8. Please provide copies of:
   PET/CT Scan



9. Why are we having to ask for information?



10. Do we need a patient advocate?
    


11. Proposed course of treatment, monitoring and observation?



12. In patient, out patient, general anesthesia?

Now we will focus our attention on the hero of this little North Carolinian saga. Evan continues to gleefully enjoy his new found sense of confidence. In the last couple of weeks he hosted his first sleepover, his remarkable guest was Tucker. The sound of their laughter would cause a stern Greek statue to smile.
With the knowledge of the surgical consult he demonstrated his acute sense of perspective when he said, “So they want me give them total control and not let me make a decision about my body.” The knowledge of the appointment and its implications have somewhat colored the little man’s behavior, but “Buddy” (Nickname from the Hogg Family) has basically been himself, back to playing soccer, practicing trombone, and building Lego’s. It’s all built; from the xenophobic based Mars Mission series to the new instant classic Indiana Jones series.
School continues to be a source of intrigue and fascination without being overly challenging. In past years we have always sought to have his teachers challenge him, but with the events of the past 2 months, we think that someone has a much more important plan for him.
Evan entered the science fair last year with an entry in robotics, and got hooked on the competition. This year he wanted to compare LED lighting with regular bulbs. It has been a great project with Evan writing to a local LED manufacturing company, they sent him some great material. With the project built, the experiments run, the data collected and the display board built, Evan faced his first critique and hurdle in the preliminary review by Dr. Brock. She was tough, and left Evan reeling; but still standing. Evan thinks that she was tough to help prepare him for the next steps. We’ll see how he does and report back later.
Please pardon the tardiness in the timing of this post, as you might tell we have been distracted. We trust that you all will appreciate the latest pictures. Thank you for your love, comments and prayers.