“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.
Thursday, January 31, 2008
Sunday, January 20, 2008
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.
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.
Thursday, January 17, 2008
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.
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
- What exactly are you proposing?
- When? 10, 30, 60, 90, 180 days
- Where What exactly are you looking to excise? How deep? How wide? What structures?
- Why are you recommending this course of treatment at this time?
- With a negative scan, what is the motivation to excise further?
- What were your thoughts on the articles which were sent to Dr. Greiner?
- Are you open to a genetic study of the tissue from block 7?
- Please provide copies of:
PET/CT Scan - Why are we having to ask for information?
- Do we need a patient advocate?
- Proposed course of treatment, monitoring and observation?
- In patient, out patient, general anesthesia?
Now we wil
l 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 an
d 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.
Monday, December 31, 2007
HAPPY NEW YEAR!
Thanks be to God! If ever there was going to be a positive end to this rollercoaster year it would have to be this way.
Today Evan had a 5 hour ordeal for getting the ‘urgent’ PET/CT scan after the conforming diagnosis of malignant melanoma. Following a failed IV start, the good Samaritan nurses from the slow pediatrics department came and got things going. FDG radioactive sugar was put in his blood stream, and radio-opaque dies were ingested. 45 minutes later, a 15 minute procedure is started, completed and we were sent home at 2:00 pm. We leave with little hope of any news before Thursday at the earliest.
However, Attending Radiologists stayed late, and one particular Pediatric Oncologist Resident stayed later. Scans were read, additional research was conducted, and phone calls were made.
At 7:00 pm, Dr. Griener called with this news: As of December 31, 2007 there were no readily observable metastatic lesions. As of December 31, 2007 there was no abnormal ‘FDG’ uptake even at the original excision site.
What happens next? God knows! But we will celebrate a new beginning this evening with the four elements most closely associated with this season: LOVE, PEACE, HOPE and this evening a greater sense of JOY.
Today Evan had a 5 hour ordeal for getting the ‘urgent’ PET/CT scan after the conforming diagnosis of malignant melanoma. Following a failed IV start, the good Samaritan nurses from the slow pediatrics department came and got things going. FDG radioactive sugar was put in his blood stream, and radio-opaque dies were ingested. 45 minutes later, a 15 minute procedure is started, completed and we were sent home at 2:00 pm. We leave with little hope of any news before Thursday at the earliest.
However, Attending Radiologists stayed late, and one particular Pediatric Oncologist Resident stayed later. Scans were read, additional research was conducted, and phone calls were made.
At 7:00 pm, Dr. Griener called with this news: As of December 31, 2007 there were no readily observable metastatic lesions. As of December 31, 2007 there was no abnormal ‘FDG’ uptake even at the original excision site.
What happens next? God knows! But we will celebrate a new beginning this evening with the four elements most closely associated with this season: LOVE, PEACE, HOPE and this evening a greater sense of JOY.
Sunday, December 30, 2007
Cancer Confirmed
Plausible Deniability has been removed from the equation. It is now confirmed, 4 out of 4 doctors concur that part of the mass removed from Evan’s back was indeed malignant melanoma. From Sloan Kettering to MD Anderson, from Henry Ford to Duke we have a confirmed diagnosis. Perhaps we have all been given this brief window of time, from first utterance to confirmation, as a way of preparation, the calm before the proverbial storm. And a storm is truly brewing.
Doctors from across the country have been discussing what the next steps should be, and they have decided that a scan is in order; and the sooner the better. So this afternoon at 2:00 p.m. we were notified that Evan was to be receiving a PET/CT scan at Duke on Monday morning. History will be the judge of our preparations and priorities as parents and patient, but we’re very glad to have made the acquaintance of Dr. Griener and Dr. Wechsler of the Duke Pediatric Oncology Group prior to getting the call this afternoon. Evan is very excited that he will be getting this first scan. Not thrilled about the I.V., but glad to be moving the process forward.
The purpose of this scan is to determine if there are any ‘hot’ spots of unusually active blood flow. Given the recent surgery the original excision site is likely to be ‘hot’, which raises concerns given the treatment options. Any other ‘hot’ spot is cause for additional concern as it is a potential indicator of metastasis. We have been informed that the next course of action/observation is already a topic of discussions with widely varying opinions amongst the various doctors.
Medicine is an art which is practiced on patients. Most times the doctor is familiar with the malady and the treatments are well known and accepted, or the malady is subject only to known palliative or maintenance measures that ultimately define a quality of life. What then for the patient that defies access to the ‘known’? What then happens to the familiarity of choices? How does one develop an informed consent? When the internet and relationships render the patient as knowledgeable in the areas of diagnosis, observation and treatment, what is the role of the physician? Is it to strut the ego? Is it to tout the academic achievements? Is it to put the patient fully in the aura of the all powerful, all knowing, all caring ‘Doctor’?
In the information age, knowledge is power, in medicine it is the power to make an informed decision, to be an active participant in discussions, to have one’s opinions heard without having to have been subject to the sycophantic process of medical school, internship and residency. The withholding of information, the exclusion from the debate process, the last minute decision making and scheduling is not just wrong, it borders on . . .
Now that the parents have shared their personal angst, anger, grief and frustration; we’ll get back once again to the main protagonist of our book. When we last left him, Evan was eagerly awaiting his role in the Christmas pageant and the arrival of a heavy sleigh, a fat man in red, and LEGOs.
Evan was one of the wise men in our children’s rendition of the birth of Jesus as shared by Matthew. Mom co-directed, Dad ran sound and lights, Morgan narrated, and Evan did his king thing. Everyone had a great time, and they only stayed up till 11 after all the sugar of the post production nosh.
Christmas Eve is Morgan’s birthday, and she treated us all to “National Treasure: Book of Secrets” and she and Evan have memorized half the script in one sitting. Mr. Evan took the opportunity this year to try to stay up and see Santa, unfortunately for him, he fell asleep at around 11:20 p.m., only to wake up at 4:00 a.m. and realize he’d missed the Jolly Old Fellow. While staying up late might put him on the ‘naughty’ list for 2008, Santa obviously had Evan in the ‘nice’ list in 2007 because there it was: the LEGO to beat all LEGOs, the Mars Mission Eagle Base. While there are undoubtedly colonialist and xenophobic overtones to this newest LEGO theme, it is the pneumatic transfer tubes and Alien characters that really get the imagination juices flowing. Evan has managed to convince us that playing Astronauts vs. Aliens is a great family activity, and has had all four of us and Snoopy playing LEGOs on the bedroom floor. What a blast!
Will write again when we can, this was meant to alleviate some of the burden of sharing the details with others, and while it is likely to be cathartic, there is some doubt over whether this is healthy or beneficial to the cause.
Doctors from across the country have been discussing what the next steps should be, and they have decided that a scan is in order; and the sooner the better. So this afternoon at 2:00 p.m. we were notified that Evan was to be receiving a PET/CT scan at Duke on Monday morning. History will be the judge of our preparations and priorities as parents and patient, but we’re very glad to have made the acquaintance of Dr. Griener and Dr. Wechsler of the Duke Pediatric Oncology Group prior to getting the call this afternoon. Evan is very excited that he will be getting this first scan. Not thrilled about the I.V., but glad to be moving the process forward.
The purpose of this scan is to determine if there are any ‘hot’ spots of unusually active blood flow. Given the recent surgery the original excision site is likely to be ‘hot’, which raises concerns given the treatment options. Any other ‘hot’ spot is cause for additional concern as it is a potential indicator of metastasis. We have been informed that the next course of action/observation is already a topic of discussions with widely varying opinions amongst the various doctors.
Medicine is an art which is practiced on patients. Most times the doctor is familiar with the malady and the treatments are well known and accepted, or the malady is subject only to known palliative or maintenance measures that ultimately define a quality of life. What then for the patient that defies access to the ‘known’? What then happens to the familiarity of choices? How does one develop an informed consent? When the internet and relationships render the patient as knowledgeable in the areas of diagnosis, observation and treatment, what is the role of the physician? Is it to strut the ego? Is it to tout the academic achievements? Is it to put the patient fully in the aura of the all powerful, all knowing, all caring ‘Doctor’?
In the information age, knowledge is power, in medicine it is the power to make an informed decision, to be an active participant in discussions, to have one’s opinions heard without having to have been subject to the sycophantic process of medical school, internship and residency. The withholding of information, the exclusion from the debate process, the last minute decision making and scheduling is not just wrong, it borders on . . .
Now that the parents have shared their personal angst, anger, grief and frustration; we’ll get back once again to the main protagonist of our book. When we last left him, Evan was eagerly awaiting his role in the Christmas pageant and the arrival of a heavy sleigh, a fat man in red, and LEGOs.
Evan was one of the wise men in our children’s rendition of the birth of Jesus as shared by Matthew. Mom co-directed, Dad ran sound and lights, Morgan narrated, and Evan did his king thing. Everyone had a great time, and they only stayed up till 11 after all the sugar of the post production nosh.
Christmas Eve is Morgan’s birthday, and she treated us all to “National Treasure: Book of Secrets” and she and Evan have memorized half the script in one sitting. Mr. Evan took the opportunity this year to try to stay up and see Santa, unfortunately for him, he fell asleep at around 11:20 p.m., only to wake up at 4:00 a.m. and realize he’d missed the Jolly Old Fellow. While staying up late might put him on the ‘naughty’ list for 2008, Santa obviously had Evan in the ‘nice’ list in 2007 because there it was: the LEGO to beat all LEGOs, the Mars Mission Eagle Base. While there are undoubtedly colonialist and xenophobic overtones to this newest LEGO theme, it is the pneumatic transfer tubes and Alien characters that really get the imagination juices flowing. Evan has managed to convince us that playing Astronauts vs. Aliens is a great family activity, and has had all four of us and Snoopy playing LEGOs on the bedroom floor. What a blast!
Will write again when we can, this was meant to alleviate some of the burden of sharing the details with others, and while it is likely to be cathartic, there is some doubt over whether this is healthy or beneficial to the cause.
Friday, December 14, 2007
Today's the day - for new friends, old friends and a new activity
Today was a day for introductions. Today was a day for confirmation of the unique (or extremely rare, depending on semantics). Today was a continuation of the waiting game. Today we got a look at life in a community we don’t want to join; and began the process of acclimating ourselves to the potential of that possibility.
Today, we have added some new doctors to our team. Dr. Wechsler is the Chief of Pediatric Oncology at Duke; and Dr. Pappo is the Chair of the Children’s Oncology Group (COG) Committee on Rare Tumors. COG is the research arm for the National Institute of Health and the National Childhood Cancer Foundation. Dr. Pappo is located in Dallas, TX and was previously at St. Jude’s in Memphis. We have also reconnected with support through a group called Nevus Outreach, http://www.nevus.org/ and they have been very helpful.
Dr. Wechsler leans heavily on the side of a conservative approach to Evan’s situation which is a true God send for all concerned. As detailed below, Childhood melanoma is a rare condition and requires close management, childhood melanomas arising from GCMN are unique, and so the word went out through COG and the brightest minds in the field are formulating best monitoring modalities and treatment protocols. All monitoring will be based on the Hippocratic theory, ‘First, do no harm’ which renders many invasive procedures off limits. The ideal choice would be a PET/CT scan which would reveal obvious hot spots around the excision site due to increased blood flow during the healing process. It might also create a wild goose chase or an opening of Pandora’s Box. And so we continue to wait.
Being unique, a one of a kind, a collector’s object is very valuable in many circles. Under these circumstances it could be seen as problematic in a good light, downright exasperating in poor light. Evan’s condition is considered rare by those who do not like to deal in absolutes, but we have yet to find a doctor who can refer us to another similar patient. COG has a wonderful website http://www.curesearch.org/ that shares some wonderful information on cancer, its incidence, prevalence, treatment, outcomes and survival rates. 450 children <20 years will be diagnosed melanoma in the US this year. 60,000 adults will be diagnosed with melanoma. Even using the higher incidence of melanoma within the GCMN community, the number of children with GCMN and melanoma in Evan’s age group is approaching 1. This means that there are no current studies or trials related to him or his condition. All treatment options other than further excision or surgeries will fall into the experimental/off label/off trial. And the reality of many of the treatment options is that they will carry a heavy price up to and including . . . Waiting is a character builder, it develops patience and discipline . . . this sounds like lecture 45 from our childhood. What it does is bring frustration, anxiety, anger, and ultimately it brings humility and peace. This is not our PLAN, this is not our place to manage a situation, and we are parts of an earthly team. A team assembled to do battle on a microscopic level with cells that are intent interfering with the life dreams and goals of boy who is as unique as the condition he carries. This team has been gifted with the brightest minds in the respective fields: Dermatology, Surgery, Pathology and Oncology. And we thank God for its assembly. A team that we know is being held up in prayer around the world. We continue to carry a hope in the plausible deniability of Evan’s clinical presentation, a rambunctious handful of playful 8 year old that has carried the initial tumor on his back since birth. The second opinion on the original expert opinion has not been developed as this is written. We were told that it would be sometime this week that we would hear about the pathology report from Dr. Kamino at NYU. You might be surprised to hear us say that this delay is good news; but she has had the slides for a longer time, and has asked to do more slides with different stains. As she is the pathologist responsible for the maintenance of the only Nevus Registry in the US, her delay indicates a level of controversy moving in a different direction likely away from treatment towards observation which is our obvious hope. Should there be any developments we will post them here in short order.
While we waited for Dr. Wechsler we were exposed to the loving community of familes, children and care providers that gather each day at the Duke Pediatric Oncology clinic. We took heart in the close knit processes and openess, and we found it all too easy to take a step backward to move away from the environment. Please hold us close to your hearts as we each struggle with a reality we are not prepared to embrace. While we are at our weakest, please pray for our strength.
Now that we’ve covered all the personnel, medical issues and primary sources of parental angst we shall return to the hero of our story, Evan and his ongoing life of excitement. This week saw the rough draft of the Science Fair 2008 entry prepared, delivered and presented. The project is the comparison of Incandescent, Fluorescent and LED light sources. Evan is evaluating power sources, power usage, light generated and cost in an effort to confirm his hypothesis that LED’s as a light source is in the best interests of us all. He built a box, put in a couple of light fixtures and some LED’s, wired the AC side, soldered the DC connections, and did the math for the report that is the backbone of his theory. Next up a visit to a local company that is a worldwide leader in commercial LED usage. He would like to extend many thanks to the Heather at the Clayton Radio Shack, and the both Tom Powers (Jr. & Sr.) at Powers Signs in Danville VA for their help in procuring the supplies.
After this morning’s trip to Duke, Evan was dropped off at school, but his thoughts were on racing. At 5:00 we joined our friends from church, The Gustavsons at Rush Hour Karting in Garner. There we all raced fast karts on an indoor track until a small spin out in turn 7 resulted in first a yellow flag, and then a red flag. Bobby had top speed, followed closely by Corey and Alex. Evan had a blast until the yellow flag but that is for another story. All in all he is loving life and livin’ large. Every passing day is a day closer to Christmas, and while he holds this sacred time close to his heart, the gleam in his eye tells the world that this day might also be call National LEGO Day. And so until next time, we leave our hero, his LEDs, LEGOs and little Mars Men to: playing, sleeping and living the life of an active engaged 8 year old.
Today, we have added some new doctors to our team. Dr. Wechsler is the Chief of Pediatric Oncology at Duke; and Dr. Pappo is the Chair of the Children’s Oncology Group (COG) Committee on Rare Tumors. COG is the research arm for the National Institute of Health and the National Childhood Cancer Foundation. Dr. Pappo is located in Dallas, TX and was previously at St. Jude’s in Memphis. We have also reconnected with support through a group called Nevus Outreach, http://www.nevus.org/ and they have been very helpful.
Dr. Wechsler leans heavily on the side of a conservative approach to Evan’s situation which is a true God send for all concerned. As detailed below, Childhood melanoma is a rare condition and requires close management, childhood melanomas arising from GCMN are unique, and so the word went out through COG and the brightest minds in the field are formulating best monitoring modalities and treatment protocols. All monitoring will be based on the Hippocratic theory, ‘First, do no harm’ which renders many invasive procedures off limits. The ideal choice would be a PET/CT scan which would reveal obvious hot spots around the excision site due to increased blood flow during the healing process. It might also create a wild goose chase or an opening of Pandora’s Box. And so we continue to wait.
Being unique, a one of a kind, a collector’s object is very valuable in many circles. Under these circumstances it could be seen as problematic in a good light, downright exasperating in poor light. Evan’s condition is considered rare by those who do not like to deal in absolutes, but we have yet to find a doctor who can refer us to another similar patient. COG has a wonderful website http://www.curesearch.org/ that shares some wonderful information on cancer, its incidence, prevalence, treatment, outcomes and survival rates. 450 children <20 years will be diagnosed melanoma in the US this year. 60,000 adults will be diagnosed with melanoma. Even using the higher incidence of melanoma within the GCMN community, the number of children with GCMN and melanoma in Evan’s age group is approaching 1. This means that there are no current studies or trials related to him or his condition. All treatment options other than further excision or surgeries will fall into the experimental/off label/off trial. And the reality of many of the treatment options is that they will carry a heavy price up to and including . . . Waiting is a character builder, it develops patience and discipline . . . this sounds like lecture 45 from our childhood. What it does is bring frustration, anxiety, anger, and ultimately it brings humility and peace. This is not our PLAN, this is not our place to manage a situation, and we are parts of an earthly team. A team assembled to do battle on a microscopic level with cells that are intent interfering with the life dreams and goals of boy who is as unique as the condition he carries. This team has been gifted with the brightest minds in the respective fields: Dermatology, Surgery, Pathology and Oncology. And we thank God for its assembly. A team that we know is being held up in prayer around the world. We continue to carry a hope in the plausible deniability of Evan’s clinical presentation, a rambunctious handful of playful 8 year old that has carried the initial tumor on his back since birth. The second opinion on the original expert opinion has not been developed as this is written. We were told that it would be sometime this week that we would hear about the pathology report from Dr. Kamino at NYU. You might be surprised to hear us say that this delay is good news; but she has had the slides for a longer time, and has asked to do more slides with different stains. As she is the pathologist responsible for the maintenance of the only Nevus Registry in the US, her delay indicates a level of controversy moving in a different direction likely away from treatment towards observation which is our obvious hope. Should there be any developments we will post them here in short order.
While we waited for Dr. Wechsler we were exposed to the loving community of familes, children and care providers that gather each day at the Duke Pediatric Oncology clinic. We took heart in the close knit processes and openess, and we found it all too easy to take a step backward to move away from the environment. Please hold us close to your hearts as we each struggle with a reality we are not prepared to embrace. While we are at our weakest, please pray for our strength.
Now that we’ve covered all the personnel, medical issues and primary sources of parental angst we shall return to the hero of our story, Evan and his ongoing life of excitement. This week saw the rough draft of the Science Fair 2008 entry prepared, delivered and presented. The project is the comparison of Incandescent, Fluorescent and LED light sources. Evan is evaluating power sources, power usage, light generated and cost in an effort to confirm his hypothesis that LED’s as a light source is in the best interests of us all. He built a box, put in a couple of light fixtures and some LED’s, wired the AC side, soldered the DC connections, and did the math for the report that is the backbone of his theory. Next up a visit to a local company that is a worldwide leader in commercial LED usage. He would like to extend many thanks to the Heather at the Clayton Radio Shack, and the both Tom Powers (Jr. & Sr.) at Powers Signs in Danville VA for their help in procuring the supplies.
After this morning’s trip to Duke, Evan was dropped off at school, but his thoughts were on racing. At 5:00 we joined our friends from church, The Gustavsons at Rush Hour Karting in Garner. There we all raced fast karts on an indoor track until a small spin out in turn 7 resulted in first a yellow flag, and then a red flag. Bobby had top speed, followed closely by Corey and Alex. Evan had a blast until the yellow flag but that is for another story. All in all he is loving life and livin’ large. Every passing day is a day closer to Christmas, and while he holds this sacred time close to his heart, the gleam in his eye tells the world that this day might also be call National LEGO Day. And so until next time, we leave our hero, his LEDs, LEGOs and little Mars Men to: playing, sleeping and living the life of an active engaged 8 year old.
Friday, December 7, 2007
Hurry Up! and WAIT!
We have all been told, “No news is Good news.” We beg to disagree, and research into situational ambiguity informs us that people would rather have bad news than no news at all; and so this week has been one of some frustration.
Slides and samples have been requested and sent to NYU where the only nevus registry in the US exists, slides and samples are also being forwarded to Henry Ford Health System, and requests for review and inclusion are also pending at Yale.
While the academic process has moved forward; a treatment/observation team assembly has been a little slower; however, we now have an appointment with the Head of Pediatric Oncology at Duke – Dr. Wechsler, who has co-authored a paper on pediatric melanoma and its treatment from a study at Univ. of Michigan. That study showed great promise. We see him next Friday, 12/14. At that time we should also have the results back from NYU – the second opinion of the second opinion.
Monday and Tuesday saw Evan take out all his Rokenbok and build a two level train track city; complete with sweepers, elevators and general machinery. We’ll try and get pictures, but getting into his room is akin to taking a walk in the jungle, your just not sure what you’re going to step on or into. He spends hours building, running, reengineering and rebuilding. It is a “task focused” intensity where he is able to shut out all distractions and find a real joy in the elements of making something new and each new rendition comes with a complete understanding of all the activities of the people within the imaginary world he has built.
Evan played his trombone in his world concert debut with the 4th grade band on Wednesday, and he/they sounded great. Thursday night he started working on his science fair project by building a display box for his experiments.
This weekend we will all be going to Asheville to hear Nana sing with the Asheville Choral Society in their Winter Concert.
Evan would like to say thank you to all who are offering prayers on his behalf, and the notes of encouragement are greatly appreciated. Our challenge as facilitators of this blog is to share news and information without unnecessarily causing anxiety. This is done with Evan knowing the clinical diagnosis, but knowing he holds only a taste of the worldly preconceptions or fears regarding his diagnosis. Nor does he have either a statistical or analogous view of that information because he lives in a statistical group where n=1. So let us keep our minds and thoughts on the present for none of us knows what the future holds, truly God only knows.
Evan on escarpment over Lake Nakuru, Kenya - June 2007 - Thank you Poppa!
Slides and samples have been requested and sent to NYU where the only nevus registry in the US exists, slides and samples are also being forwarded to Henry Ford Health System, and requests for review and inclusion are also pending at Yale.
While the academic process has moved forward; a treatment/observation team assembly has been a little slower; however, we now have an appointment with the Head of Pediatric Oncology at Duke – Dr. Wechsler, who has co-authored a paper on pediatric melanoma and its treatment from a study at Univ. of Michigan. That study showed great promise. We see him next Friday, 12/14. At that time we should also have the results back from NYU – the second opinion of the second opinion.
Monday and Tuesday saw Evan take out all his Rokenbok and build a two level train track city; complete with sweepers, elevators and general machinery. We’ll try and get pictures, but getting into his room is akin to taking a walk in the jungle, your just not sure what you’re going to step on or into. He spends hours building, running, reengineering and rebuilding. It is a “task focused” intensity where he is able to shut out all distractions and find a real joy in the elements of making something new and each new rendition comes with a complete understanding of all the activities of the people within the imaginary world he has built.
Evan played his trombone in his world concert debut with the 4th grade band on Wednesday, and he/they sounded great. Thursday night he started working on his science fair project by building a display box for his experiments.
This weekend we will all be going to Asheville to hear Nana sing with the Asheville Choral Society in their Winter Concert.Evan would like to say thank you to all who are offering prayers on his behalf, and the notes of encouragement are greatly appreciated. Our challenge as facilitators of this blog is to share news and information without unnecessarily causing anxiety. This is done with Evan knowing the clinical diagnosis, but knowing he holds only a taste of the worldly preconceptions or fears regarding his diagnosis. Nor does he have either a statistical or analogous view of that information because he lives in a statistical group where n=1. So let us keep our minds and thoughts on the present for none of us knows what the future holds, truly God only knows.
Evan on escarpment over Lake Nakuru, Kenya - June 2007 - Thank you Poppa!
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