Another interesting day in the medical life of Evan Coleman. Friday, September 26, 2008 saw Evan in Detroit seeing Dr. Tor Shwayder (Pediatric Dermatologist) where photos were compared from 6 days of age to 6 years of age to current time. Conclusions. . . fascinating situation, no historical context, consider seeing Dr. Marghoob, consider CGH of 6 week sample from same area on Evan's back, and continue to wait, watch and see. At the same time in San Francisco, Dr. Bastian (Geneticist with interest in pigmented lesions) was getting his first draft of his report ready. Dr. Bastian was kind enough to give us a call with the preliminary results, medical conclusions and proposed plans of action.
We haver not received his final written report, and so the information shared here is paraphrased from a half hour conversation while the author was driving down a freeway during Detroit rush hour.
There are chromosomal abnormalities, but they are not consistent with melanoma. The histological presentation is sarcotamous (like a sarcoma – soft tissue malignancy). There is no record of any person having a sarcoma arising in a GCN. When given Evan's clinical history, Dr. Bastian expressed a profound curiosity and offered to study not only the current tissue, but could we get tissue from the original sample taken when Evan was 6 weeks old. This he offered to do of his own volition in his private lab. His gut instinct is an atypical proliferative nodule with sarcomatous presentation, something that has never been seen before.
In conclusion our fears shift from one type of cancer to another (melanoma to sarcoma), testing will continue, and we continue to be vigilant observation concentrating on lymph or glandular involvement, areas of breakdown, and generally protecting the area in question to avoid unnecessary contacts and traumas. Thank you for your continued prayers. We find ourselves continuing on the path of the unknown, and your thoughts and prayers offer constant light to our way.
Combining work with pleasure is a requirement for a young man on the go. So Evan engaged in some fun activities with friends and family while out of town. First he went with his friends Courtney, Lily and Ethan out buying property in Detroit. As you might have heard, property values in Detroit are not what they used to be. Here, Ethan is acquiring a couple of homes for $200. Following a late night out on the town with his friends, it was a relaxing tractor ride into the orchards of Michigan to pick bushels of apples with family. Later today Evan will be cutting up the dance floor at his cousin's wedding. No pictures at this time, and the videos may be classified, but we'll try to smuggle some into the blog for the next episode. Till next time . . .
Saturday, September 27, 2008
Thursday, September 11, 2008
Please Stand By. . .
And the latest news from the lab is. . . please stand by, we are having technical difficulties. The coinciding of our need for genetic analysis fell at the time when technicians critical to the process had scheduled their vacations. As a result of these delays we have been told not to expect results before September 26.
In the meantime, we felt a brief musical interlude was in order, followed by a biographical snippet from Evan’s sister Morgan.
EVAN
We live in fear of a monster. Days go by where not a word passes our lips, but we know it’s lurking in the darkness, waiting to pounce on its prey, my brother. We anxiously await the tests, which currently reside in San Francisco. During this process, we wait, weep and pray. We know God is in all of this somewhere.
We all knew something was there ever since he was born. A giant congenital nevus. On the nevus a small bump which was biopsied after six weeks. But exactly a year ago August 28th, while running around in church, the bump got bumped. But not just bumped, more like brutally squashed. Overnight, it grew three times its original size. That night I felt so guilty because I was the one chasing him which caused him to rum into a chair. It was not a question, the bump was coming off. Not only because it was hazardous to his health, but it was one of the worst pains he had and would experience.
On November 15, 2007, he had the surgery to get the bump removed. They couldn’t remove the whole nevus because it covers from his neck to lower back and wraps around his flanks. The doctors estimated surgery time to be an hour and a half. It turned out to take 3 hours. I was in Mrs. Soto’s class when my mom called to tell me Evan’s surgery was over and they were still waiting for him to wake up.
On November 28, 2007, the diagnosis was back. Malignant Melanoma, the rarest of all cancers. Pediatric Malignant Melanoma occurs in 1 in 3 million people between the ages of 0-20. The giant congenital nevus occurs in 1 in half a million. So his condition specifically is 1 in 1,500,000,000,000 (1.5 trillion) and will probably not occur again in our lifetime. After this event, my parents initiated a prayer chain. We notified family, friends, pastors and employers. We began to research and gather medical input. Evan had a PET/CT scan of New Year’s Eve 07. The results came back negative, that very night. We were overwhelmed with relief and ready to start the year anew.
A little into the New Year, we were finding some interesting articles; but we were told they weren’t of much use after being and were rejected by the medical team. Instead Evan had what we were told was a Wide Margin Excision on February 1st, 2008, which required a skin graft. A week later, he went back under for a dressing change.
On May 15th, he had another PET/CT Scan. The results were still negative. But a new mass was visible to my parents. They were determined to keep and eye on this. On June 15th, the mass had grown. My parents sought out surgical consult the next day, and on June 17th they had a biopsy taken.
Unfortunately on June 22nd, the results were back, positive. It was here, it was real, and it was cancer. I remember, it was a Thursday afternoon after a long day of being in charge of the 1st grade class at my church’s VBS. My “co-worker” came with me to my guitar lesson later and we went shopping at Old Navy and got matching shirts. We came home and watched my favorite comedian on DVD, and that lasted about 2 hours. Then there was a phone call that my parents picked up and mysteriously a half hour later my friend was suddenly picked up for and unexplained reason. My parents told me to wait in the bonus room while they talked to Evan. I had the feeling in my gut what it was that they were about to tell me. My mom called me in. She had red, puffy eyes and so did my brother. They told me everything and I was speechless. I wasn’t the same person for about a week afterwards, and it wasn’t even me who was diagnosed. Oh, how he must have felt. But it brought everyone to tears when Evan piped up and said, “Its ok, Mommy. If I die, I know I’m going to heaven.” These results brought us shock, panic, fear, anger, guilt, commitment, grace and faith.
Ten days later, the medical team introduced an oncology surgeon. He suggested a wide margin excision (hadn’t we already had that?), which we were told, if done right, is life-threatening. The surgeon also recommended a second opinion, which we looked into.
That same day my dad got an invitation to present Evan’s case to the Nevus Science group on July 10th. The next morning the doctors also scheduled the wide margin excision, for July 10. But we declined.
From July 9th-11th was the Nevus outreach convention in Dallas, Texas. I thought it was kind of funny how people scheduled a conference for a bunch of people with a pre-cancerous skin condition in the middle of the summer, in one of the sunniest places in America, but whatever. Our family hope is restored because the literature we found previously was actually valid. We continue with caution.
We find a new medical team at Texas Children’s Cancer Center, which is the world’s leading children’s rare tumor specialist team. At this point a new plan is developed.
On July 16th, we started shipping pieces of Evan around the country. The tests will take four to six weeks.
On the first of August, the tests begin. The earliest we would get an answer is August 29th. This brings back one of my favorite lines from the movie Evan Almighty. “When people ask for courage, does He make them courageous or does He give them the opportunity to be courageous? When they ask for patience does He give them patience or the opportunity to be patient?”
THE END
In the meantime, we felt a brief musical interlude was in order, followed by a biographical snippet from Evan’s sister Morgan.
EVAN
by Morgan Coleman 8/28/2008
We live in fear of a monster. Days go by where not a word passes our lips, but we know it’s lurking in the darkness, waiting to pounce on its prey, my brother. We anxiously await the tests, which currently reside in San Francisco. During this process, we wait, weep and pray. We know God is in all of this somewhere.
We all knew something was there ever since he was born. A giant congenital nevus. On the nevus a small bump which was biopsied after six weeks. But exactly a year ago August 28th, while running around in church, the bump got bumped. But not just bumped, more like brutally squashed. Overnight, it grew three times its original size. That night I felt so guilty because I was the one chasing him which caused him to rum into a chair. It was not a question, the bump was coming off. Not only because it was hazardous to his health, but it was one of the worst pains he had and would experience.
On November 15, 2007, he had the surgery to get the bump removed. They couldn’t remove the whole nevus because it covers from his neck to lower back and wraps around his flanks. The doctors estimated surgery time to be an hour and a half. It turned out to take 3 hours. I was in Mrs. Soto’s class when my mom called to tell me Evan’s surgery was over and they were still waiting for him to wake up.
On November 28, 2007, the diagnosis was back. Malignant Melanoma, the rarest of all cancers. Pediatric Malignant Melanoma occurs in 1 in 3 million people between the ages of 0-20. The giant congenital nevus occurs in 1 in half a million. So his condition specifically is 1 in 1,500,000,000,000 (1.5 trillion) and will probably not occur again in our lifetime. After this event, my parents initiated a prayer chain. We notified family, friends, pastors and employers. We began to research and gather medical input. Evan had a PET/CT scan of New Year’s Eve 07. The results came back negative, that very night. We were overwhelmed with relief and ready to start the year anew.
A little into the New Year, we were finding some interesting articles; but we were told they weren’t of much use after being and were rejected by the medical team. Instead Evan had what we were told was a Wide Margin Excision on February 1st, 2008, which required a skin graft. A week later, he went back under for a dressing change.
On May 15th, he had another PET/CT Scan. The results were still negative. But a new mass was visible to my parents. They were determined to keep and eye on this. On June 15th, the mass had grown. My parents sought out surgical consult the next day, and on June 17th they had a biopsy taken.
Unfortunately on June 22nd, the results were back, positive. It was here, it was real, and it was cancer. I remember, it was a Thursday afternoon after a long day of being in charge of the 1st grade class at my church’s VBS. My “co-worker” came with me to my guitar lesson later and we went shopping at Old Navy and got matching shirts. We came home and watched my favorite comedian on DVD, and that lasted about 2 hours. Then there was a phone call that my parents picked up and mysteriously a half hour later my friend was suddenly picked up for and unexplained reason. My parents told me to wait in the bonus room while they talked to Evan. I had the feeling in my gut what it was that they were about to tell me. My mom called me in. She had red, puffy eyes and so did my brother. They told me everything and I was speechless. I wasn’t the same person for about a week afterwards, and it wasn’t even me who was diagnosed. Oh, how he must have felt. But it brought everyone to tears when Evan piped up and said, “Its ok, Mommy. If I die, I know I’m going to heaven.” These results brought us shock, panic, fear, anger, guilt, commitment, grace and faith.
Ten days later, the medical team introduced an oncology surgeon. He suggested a wide margin excision (hadn’t we already had that?), which we were told, if done right, is life-threatening. The surgeon also recommended a second opinion, which we looked into.
That same day my dad got an invitation to present Evan’s case to the Nevus Science group on July 10th. The next morning the doctors also scheduled the wide margin excision, for July 10. But we declined.
From July 9th-11th was the Nevus outreach convention in Dallas, Texas. I thought it was kind of funny how people scheduled a conference for a bunch of people with a pre-cancerous skin condition in the middle of the summer, in one of the sunniest places in America, but whatever. Our family hope is restored because the literature we found previously was actually valid. We continue with caution.
We find a new medical team at Texas Children’s Cancer Center, which is the world’s leading children’s rare tumor specialist team. At this point a new plan is developed.
On July 16th, we started shipping pieces of Evan around the country. The tests will take four to six weeks.
On the first of August, the tests begin. The earliest we would get an answer is August 29th. This brings back one of my favorite lines from the movie Evan Almighty. “When people ask for courage, does He make them courageous or does He give them the opportunity to be courageous? When they ask for patience does He give them patience or the opportunity to be patient?”
THE END
Sunday, August 10, 2008
Summer of Fun vs. Anxiety of the Uncontrollable
A musically gifted frined from NY shares a lullably
It is difficult to watch a summer come slowly and unceasingly toward its end. This year perhaps more so as we savor every hour of every day not knowing what is yet to come. The feeling here is one of nervous anticipation, a calm before a potential storm, the hazy days of summer making way before the possibility of a hurricane. 
Evan sitting on the Texas Children's Gecko
Here are the facts. We have chosen a plan that involves waiting for genetic results. That we wanted this testing done 8 months ago is spilled milk or water under the bridge. The results will be back sometime in the first 2 weeks in September. The offending cells have not gone away and a new mass is forming in the same location as the older removed lesions. Every physical symptom (feeling cold, feeling hot, aches, pains, a cough, etc.) is filled with anxiety and guilt ridden doubt. Evan does not have any swollen glands (a good thing) he continues to act, play, practice and act out just like every other 9 year old boy.
This portal for information is increasingly challenging to maintain. We have a plan, but the eager desire for information on our part is echoed, mirrored and amplified by the sincerest of question, “How’s Evan doing?” To maintain a degree of normalcy we throw ourselves in to the activities of the moment, leading hyper-active lives. Authoring a blog about the trials and tribulations facing a boy and his family as they face the black cloud of rare childhood cancer is not normal. So, we throw ourselves into work, play, study, preparations for the new school year, and for the moment we prize every moment in an effort to pry a little more life out of every minute. We have an understanding that to dwell on the unknown, the uncontrollable is to fall firmly into the old Chinese proverb, - Anticipation of death is worse than death itself. We must seize the day, Carpe Diem. After all the past was yesterday, tomorrow is the future, and God has given us this day, that is why it is the Present. This is the day that the Lord has made, and we shall be glad in it.
In the meantime, cousins come from foreign lands (Carew and family), other cousins get married (Matt & Melissa, Beth & Tim), another cousin came from another state to visit (Meg) and other cousins email (Gareth and family, Jeremy, Katie & Riley) And we are about the business and joy of lives being lived. For it is a more pleasant place to reside in the joy of today than to seek out the deep dark, morass of the ‘What If’s?”
To all who have emailed Evan at Evan@e-nevusnotes.com, thank you. To all who have and continue to pray for us, thank you. To all who have brought meals, or invited us to break bread in their homes, thank you. To those who have given us their hard won PDO and PTO, we say ‘Thank you’. And to all who have donated monies to “Evan’s Fund”, thank you.
Food Glorious Food . Meeting friends in West Virginia
IN THE LATEST EPISODE OF OUR SERIAL, WE FIND OUR HERO . . .
Evan had the most awesome time getting a personal private tour of the CISCO international headquarters and lab. We’re not sure if our tour guide will get in trouble for sharing this news, but Evan couldn’t stop talking about it for the next two days. What an awesome friend, the masked man of CISCO shall remain our secret, but way cool. Lunch at the world headquarters and then half an acre of rack mounted servers and networking. Evan has his eyes set on a future employer.
The plans for the Science Fair continue. For a brief history, 2 years ago, Evan built a LEGO robot and programmed it as part of a demonstration, deemed too young to have done it by himself, he did not place. Last year after writing to businesses, accumulating all the parts, and building the experiment he demonstrated and scientifically broke down the energy and financial benefits of different types of lighting (Incandescent, CFL’s and LED’s) 2 years younger than the oldest competitors, Evan placed 4th in the State of North Carolina. This year he wants to build a new computer (he already built his first in 2005 and is still using it) Not only does he want to build it, he intends to video/photograph the steps, and present the project on a multi video display using presentation software detailing its construction, it’s features and it’s benefits. Here is Evan’s long awaited list of supplies to be acquired to begin building his computer.
Zalman Reservator 1 V2 fanless water cooling system (www.xoxide.com/zalman-reservator-1-v2.html)
Gigabit Desktop Network PCI Card
PCI Multichannel Sound Card
N1 wireless desktop card
Sunbeam UV LED UV Blue reactive clear case
ATX Full size motherboard
Quad core or similar CPU
Video PCI card capable of HDMI, XGA, DVI and S-video
4 GB ECC RAM
Tuner card
DVD Combo Drive
500 GB internal HD
From a parents stand point this is over the top, outrageous, and completely awesome. How or why would one discourage this sort of creative ambition in a child? So, if any of you, the readers would be interested in encouraging this behavior, please contact Evan by email (Evan@e-nevusnotes.com), I’m sure he would love to hear from you, and share the mad grandeur of his plans.
Thank you to Meg for giving the family a reason to go to the beach, here are some pictures of Evan in his Australian surfer/sun suit playing in the West side of the Atlantic Pond
Morgan, Cousin Meg, and Evan
Evan, just waiting on a wave
Tuesday, July 15, 2008
We're Back!!!!
The potential for the length of this blogpost might use astronomical units for accuracy of length. If we thought the previous weeks were full of information, they could not hold a candle to the amount of knowledge we gathered in 3 days in Dallas, and 1 day in Houston. I will for the sake of the reading publichit the high points here, share some pictures, and most importantly move Evan's email address to the top.Evan can be reached at Evan@e-nevusnotes.com.
1. The conference was awesome. Tons of information, coupled with new friends, old friends and the laughter of children.
2. The Nevus Science Group had some answers. The literature we brought forward was not discounted, but embraced. Evan's case grabbed their attention, and they advised slowing down and getting the CGH testing done to find out what the mass is/was. 
PS it can be done on older fixed tissue, not just live tissue as we had been lead to believe. (The article in question presents a process for determining whether a growth in a GCN is either a benign nodule or malignant melanoma at the only differential level, the genetic level)
PS it can be done on older fixed tissue, not just live tissue as we had been lead to believe. (The article in question presents a process for determining whether a growth in a GCN is either a benign nodule or malignant melanoma at the only differential level, the genetic level)3. Statistcally speaking, in an amusing misapplication of math, If Evan had a dollar for every likelihood that he would not have his 2 conditions (MM and GCN) he would have $1,500,000,000,000 or slightly less than the US national debt. The risk being ~1 : 1.5 trillion!!!
4. The geneticist at UCSF confirmed that the CGH testing can be done from fixed tissue (already taken out). It takes 4-6 weeks. It can 100% confirm MM, or 85% R.O. MM.
5. The compassion, support, caring and love we felt in Houston was amazing. There are no quick answers to Evan's situation, and the rush to do some
thing needed to give way to a slower more methodical and 21st century approach. It was given in a 19th century soothing bedside manner. We saw 3 specialists in 5 hours. Our question, "Do we have 8 weeks to get the CGH testing, or do we need to operate NOW because this has life and death implications in that time?" The answers: Oncology - take the time; Dermatology - take the time; Surgery - take the time, but if I see something that needs immediate attention, I'll tell you immediately.
thing needed to give way to a slower more methodical and 21st century approach. It was given in a 19th century soothing bedside manner. We saw 3 specialists in 5 hours. Our question, "Do we have 8 weeks to get the CGH testing, or do we need to operate NOW because this has life and death implications in that time?" The answers: Oncology - take the time; Dermatology - take the time; Surgery - take the time, but if I see something that needs immediate attention, I'll tell you immediately.In the coming days we will expand on each of the previous items, but for now you know the gist. In the meantime, we'll leave you with the advice of Matt Luke, a retired MLB player who has a nevus on his face. Survival and thriving in the world is based on a 4 level life. One level is family that loves you, encourages you and shares this with you every day. An second level is a close group of friends who accept you for who you are, or who you are not. The third level is finding the thing you are most gifted or talented and accept this calling with a passion. But the most important is the base level found in one's faith. While we hope that you have each found your faith base, we know that you are part of our extended famly lifting us up in thought, word and prayer.
Thank you
Wednesday, July 9, 2008
4th of July - Evan Independence Day
Today we're off to Texas, where ev'rythang's . . . We'll let you fill in the blanks. We just wanted to leave you with some of the fun of the past weekend. North Carolina Symphony & the city of Garner fireworks; and the Carolina Mudcats game and fireworks. Thank you Cindy Elliot for helping us capture the moments.
Small Group at the Shrine of the Bat
The Three Amigos: William, Evan & Andy
Evan & Mom
Small Group at the Shrine of the Bat
The Three Amigos: William, Evan & Andy
Two of Evan's youngest and most ardent admirers, Tommy and Megan Elliot before they took the field for between inning antics as trainees of the Muddie, the Mudcats's mascot.
If you have images of Evan and would like to share them, please drop an e-mail to Paul @e-colemans.com Thank you for all your prayers.
Friday, July 4, 2008
7 long days = Too much information
If we felt that things were approaching overwhelming with the diagnosis of recurrence, then we obviously underestimated the avalanche of stress that was yet to come. There comes a special strength from our faith, an inner power that carries us through and undergirds our resolve to continue forward on this journey even when it feels like the very flames from hell are nipping at the edges of your soul. Without this support we would be lost, we cannot imagine this passage without our family, faith and our friends.
We have not had much sleep these past seven days. Between the myriad of emotions that accompany grief, we have enjoyed spells of intense family time and pure happiness in a child’s laugh that would warm the heart of the coldest person. Many hours have been spent in research, contacting friends, and friends of friends. Some people have offered connections, some have been candid in their lack of knowledge, but everyone has shared their love, thoughts and prayers of support. All these efforts culminated in consultations at Duke July 2-3.
The consultations were the direct result of our “Patient Advocate” Dr. Greiner, the Pediatric Oncology Chief Resident, truly warm hearted man. His understanding of the appropriate clinical approach was to go to the NCI protocol for rare tumors and recommend a complete wide margin excision. This entailed introducing a new surgeon to the team, the Pediatric Oncology choice for tumor removal, Dr. Rice.
On day one of the consultations, we (Evan, Paul & Lizy) met with the chairs of
Pediatric Dermatology, Pediatric Oncology, Dr. Rice and Dr. Greiner. The gist: 1. Dermatology would look into getting the requested genetic panels of the tumorous tissue (the third time we have asked); 2a. Oncology has no way of tracking the mass (it was visible at the surface, but did not show up on the PET/CT scan) and 2b. No suggestions on how to treat it beyond surgical rescission; 3. Surgery said that the National Cancer Insitute (NCI) protocol dictated the excision of tissue (in the general shape of the original ‘Wide Margin’ excision) down to beyond the chest wall to lung tissue.
It does not matter how prepared you are to hear this news; it just takes your breath away. It was news we had been dreading since wide margin excision had been discussed in January and we had been relieved when we had been told that it wouldn’t have to be that deep. So now, knowing what
was coming, and having confirmed this with the National Cancer Institute protocol. We still felt like we had been kicked in the gut.
This is the sort of Major surgery that would get anyone nervous, and likely scared silly. It involves taking a child, who looks and acts like nothing is wrong in the world, and subjecting them to an extended surgical procedure (1 day for excision, 4 days with an open surgical site, 1 day of reconstruction, and 2 weeks of further hospitalization). I suppose it’s no wonder that Dr. Rice recommended a second opinion, but who?
During the course of research, what we were told by numerous clinicians regarding Giant Congenital Nevi (GCN) and a relationship to Melanoma did not seem to be borne out in the conversations within the forums/support networks for people dealing with GCN. While there were cries for support for neurocutaneous melanosis (NCM), its detection, MRI’s, mean people, and surgical procedures to remove GCN in small children; there was only one cry for melanoma support before ours in the last year, and that was from a 2 year old in New Zealand w
ho passed away after developing melanoma after a dermal abrasion procedure when she was 6 weeks old. When this detail was brought to Nevus Outreach Inc., Paul was asked to come to the biannual conference in Dallas to speak to the Nevus Science Group on developing both a statistical breakdown relating to melanoma, and the addition of genetic panels of people with GCN to the Nevus Registry. The Nevus Registry is the largest databank of information on people with GCN; it is filled with the clinical histories, treatments, outcomes, and cellular histology.
That conference is July 9 – July 12 in Dallas, TX. Surgery has tentatively been scheduled to begin July 10. Dr. Pappo is at the Texas Children’s Cancer Center in Houston. Dr. Rice is recommending a second opinion. Where’s the money for a trip to Texas on short notice going to come from? (Note to self: Co-Pays on PET/CT scans, which don’t work, are very expensive. Second note to self: Co-pays on ineffective surgeries are more expensive. Third note to self: Six month reserves for emergencies run out in six months.)
Family and friends to the rescue, again! July 4 is US Independence Day; July 4 is now also officially Evan Coleman Independence Day. We will be postponing surgery till ??? Evan, Lizy and Paul will be travelling to Dallas for the conference, and have a clinical consultation with Dr. Pappo, and the dermatology and surgical teams at Texas Children’s Cancer Center, on Monday July 14. Please do not stop praying for us, it is by and through those prayers that we are given the strength to journey on, to seek out the right people, to ask the right questions in our struggle for Evan’s life.
Now that we have convinced you that Evan’s parents are without any doubt ‘touched’ in the head, a brief note on the Leader of the LEGO world. As you may have noted, Evan has a love of LEGO. What you might not know is his love of computers, or rather his love of all the wires go together to make a computer work. The passion to connect everything has resulted in a discussion about whether or not it is right to sue your brother/son for trip and fall injuries because of the spider’s web of networking cables running between routers, computers, PS2 game systems, and anything else that has an RJ-11, RJ-12 or RJ-45 connection.
Dad gave permission that Evan could do what he wanted with the computer he built 4 years ago, and any of the left over components of his techno pack rat father. This did not sit well with Mom as she feared that her son might be a family oriented cyber terrorist wrecking both her internet avenue for email or worse still her computer might be destroyed under the meddling hands of her youngest child. The internal torment of her mind battling, between her love for the ‘Schnookums’ and her fear of a ‘Cyber Lex Luther’, was something to behold. A balance was struck by Dad, who thinking he was the new Solomon, declared all computers, not his own, to be off limits to the budding Bill Gates.
Dad is not Solomon, and Evan will get to do what he wants. All things fell apart, literally, when Dad’s laptop took a header of a ledge, and needed to be sent off for repair. He went to back up the contents to a previously synched exterior harddrive, and found it in 7 pieces in a box by Evan’s work area. Not a problem you say, you’re a bright lad, Dad, just put it back together. Dad would have, but it needed 8 parts. Ooops! Once again trying to play Solomon, Dad tells Evan, “You cannot network, assemble or disassemble any more computers or components until you’ve read this book and can pass a test.” The book – “A Guide to A+” A computer repair technician entry level text book.
Did we mention that Dad is not Solomon? Evan started reading, and loved it. He started speaking in three letter acronyms like a military analyst on CNN, and the ideas started to flow. The next Science Fair project will be a computer. A computer built by Evan. Dad seeking to slow the process down says – design it first. Mom and Dad spoke with doctors, and Evan drew. Dad works, and Evan draws. Evan is interested in if you would like to help with his grand scheme. If so please drop him an email to Evan@E-NevusNotes.com I am sure he would love to provide you with a list of his desires, something the editor of this blog is unwilling to do.
As we prepare to head West in the coming week, you remain in our prayers. Without you, the known and the unknown, who extend your heartfelt compassion and prayers to us, we would find every step leaden burden. NB we have enhanced the blog so that comments are now reviewed prior to being posted. If you would like to let us know something, but blog exposure is a concern, just include that concern, and we will not publish the comment. Or if it works better for you, Evan would love to hear from you personally at Evan@E-NevusNotes.com .
We have not had much sleep these past seven days. Between the myriad of emotions that accompany grief, we have enjoyed spells of intense family time and pure happiness in a child’s laugh that would warm the heart of the coldest person. Many hours have been spent in research, contacting friends, and friends of friends. Some people have offered connections, some have been candid in their lack of knowledge, but everyone has shared their love, thoughts and prayers of support. All these efforts culminated in consultations at Duke July 2-3.
The consultations were the direct result of our “Patient Advocate” Dr. Greiner, the Pediatric Oncology Chief Resident, truly warm hearted man. His understanding of the appropriate clinical approach was to go to the NCI protocol for rare tumors and recommend a complete wide margin excision. This entailed introducing a new surgeon to the team, the Pediatric Oncology choice for tumor removal, Dr. Rice.
On day one of the consultations, we (Evan, Paul & Lizy) met with the chairs of
Pediatric Dermatology, Pediatric Oncology, Dr. Rice and Dr. Greiner. The gist: 1. Dermatology would look into getting the requested genetic panels of the tumorous tissue (the third time we have asked); 2a. Oncology has no way of tracking the mass (it was visible at the surface, but did not show up on the PET/CT scan) and 2b. No suggestions on how to treat it beyond surgical rescission; 3. Surgery said that the National Cancer Insitute (NCI) protocol dictated the excision of tissue (in the general shape of the original ‘Wide Margin’ excision) down to beyond the chest wall to lung tissue.It does not matter how prepared you are to hear this news; it just takes your breath away. It was news we had been dreading since wide margin excision had been discussed in January and we had been relieved when we had been told that it wouldn’t have to be that deep. So now, knowing what
was coming, and having confirmed this with the National Cancer Institute protocol. We still felt like we had been kicked in the gut.This is the sort of Major surgery that would get anyone nervous, and likely scared silly. It involves taking a child, who looks and acts like nothing is wrong in the world, and subjecting them to an extended surgical procedure (1 day for excision, 4 days with an open surgical site, 1 day of reconstruction, and 2 weeks of further hospitalization). I suppose it’s no wonder that Dr. Rice recommended a second opinion, but who?
During the course of research, what we were told by numerous clinicians regarding Giant Congenital Nevi (GCN) and a relationship to Melanoma did not seem to be borne out in the conversations within the forums/support networks for people dealing with GCN. While there were cries for support for neurocutaneous melanosis (NCM), its detection, MRI’s, mean people, and surgical procedures to remove GCN in small children; there was only one cry for melanoma support before ours in the last year, and that was from a 2 year old in New Zealand w
ho passed away after developing melanoma after a dermal abrasion procedure when she was 6 weeks old. When this detail was brought to Nevus Outreach Inc., Paul was asked to come to the biannual conference in Dallas to speak to the Nevus Science Group on developing both a statistical breakdown relating to melanoma, and the addition of genetic panels of people with GCN to the Nevus Registry. The Nevus Registry is the largest databank of information on people with GCN; it is filled with the clinical histories, treatments, outcomes, and cellular histology.That conference is July 9 – July 12 in Dallas, TX. Surgery has tentatively been scheduled to begin July 10. Dr. Pappo is at the Texas Children’s Cancer Center in Houston. Dr. Rice is recommending a second opinion. Where’s the money for a trip to Texas on short notice going to come from? (Note to self: Co-Pays on PET/CT scans, which don’t work, are very expensive. Second note to self: Co-pays on ineffective surgeries are more expensive. Third note to self: Six month reserves for emergencies run out in six months.)
Family and friends to the rescue, again! July 4 is US Independence Day; July 4 is now also officially Evan Coleman Independence Day. We will be postponing surgery till ??? Evan, Lizy and Paul will be travelling to Dallas for the conference, and have a clinical consultation with Dr. Pappo, and the dermatology and surgical teams at Texas Children’s Cancer Center, on Monday July 14. Please do not stop praying for us, it is by and through those prayers that we are given the strength to journey on, to seek out the right people, to ask the right questions in our struggle for Evan’s life.Now that we have convinced you that Evan’s parents are without any doubt ‘touched’ in the head, a brief note on the Leader of the LEGO world. As you may have noted, Evan has a love of LEGO. What you might not know is his love of computers, or rather his love of all the wires go together to make a computer work. The passion to connect everything has resulted in a discussion about whether or not it is right to sue your brother/son for trip and fall injuries because of the spider’s web of networking cables running between routers, computers, PS2 game systems, and anything else that has an RJ-11, RJ-12 or RJ-45 connection.
Dad gave permission that Evan could do what he wanted with the computer he built 4 years ago, and any of the left over components of his techno pack rat father. This did not sit well with Mom as she feared that her son might be a family oriented cyber terrorist wrecking both her internet avenue for email or worse still her computer might be destroyed under the meddling hands of her youngest child. The internal torment of her mind battling, between her love for the ‘Schnookums’ and her fear of a ‘Cyber Lex Luther’, was something to behold. A balance was struck by Dad, who thinking he was the new Solomon, declared all computers, not his own, to be off limits to the budding Bill Gates.
Dad is not Solomon, and Evan will get to do what he wants. All things fell apart, literally, when Dad’s laptop took a header of a ledge, and needed to be sent off for repair. He went to back up the contents to a previously synched exterior harddrive, and found it in 7 pieces in a box by Evan’s work area. Not a problem you say, you’re a bright lad, Dad, just put it back together. Dad would have, but it needed 8 parts. Ooops! Once again trying to play Solomon, Dad tells Evan, “You cannot network, assemble or disassemble any more computers or components until you’ve read this book and can pass a test.” The book – “A Guide to A+” A computer repair technician entry level text book.
Did we mention that Dad is not Solomon? Evan started reading, and loved it. He started speaking in three letter acronyms like a military analyst on CNN, and the ideas started to flow. The next Science Fair project will be a computer. A computer built by Evan. Dad seeking to slow the process down says – design it first. Mom and Dad spoke with doctors, and Evan drew. Dad works, and Evan draws. Evan is interested in if you would like to help with his grand scheme. If so please drop him an email to Evan@E-NevusNotes.com I am sure he would love to provide you with a list of his desires, something the editor of this blog is unwilling to do.
As we prepare to head West in the coming week, you remain in our prayers. Without you, the known and the unknown, who extend your heartfelt compassion and prayers to us, we would find every step leaden burden. NB we have enhanced the blog so that comments are now reviewed prior to being posted. If you would like to let us know something, but blog exposure is a concern, just include that concern, and we will not publish the comment. Or if it works better for you, Evan would love to hear from you personally at Evan@E-NevusNotes.com .
Many people ask what they might do for us as a family, we now have some answers:
1. A fund has been established to help offset medical and travel expenses. The account is called Evan’s Fund and donations can be made
ATTN: Tellers
Evan’s Fund
Crescent State Bank
1005 High House Rd.
Cary, NC 27513.
The branch managers, Eric Divine and Elizabeth Cantino, have been very helpful in setting this up. If you have questions, they can be reached at 919-460-7770
2. Evan, while unique, has much to offer both the Melanoma and Nevus Communities. An idea arose as to how we might help others by the experiences we gain and information we have, want to have, and need to research. Kendra Hartshorn (Our friend, and Paul’s Co-worker) has graciously offered to spearhead the efforts to establish the Melanoma-Giant Nevus Foundation. The current mission statement reads:
MGNF is dedicated to furtherance of support and research into causes and cures for Malignant Melanoma arising in the Pediatric Giant Congenital Nevus patient population. Malignant Melanoma is a rare pediatric solid tumor cancer that unfortunately has a growing population due to a variety of reasons. The incidence of Giant Congenital Nevi is even rarer; however, the incidence of Malignant Melanoma within the GCN population is unseemly rare given the prevalent presumption that the GCN is a pre-cancerous lesion. The goal of MGNF is to strike a balance of support between: research identification and funding; and assisting the patients and families with GCN and MM with the understanding that within this patient population are the potential genetic answers to both causes and cures for MM in the general population.
Your assistance with the second project would be invaluable, we are assembling a list of experts to tap into, and initial contacts have been positive. The need for volunteers to make a few phone calls or to assemble contact lists for others would be invaluable. The goal is to attain 501(c)(3) status within 27 months, and we have an accountant who has agreed to help in this although this is not his area of expertise. If you are interested in helping, no matter where you are in the world, please email Kendra@Melanoma-GiantNevus-Foundation.com
Thursday, June 26, 2008
LIFE COMES AT YOU FAST
It is a reality captured in the Nationwide Insurance advertising campaign. What is not captured so cleanly is that it is not life we fear or its speed, but the ultimate reality that death stalks the road we travel, seeking to nip us at the finish line like Jeff Gordon or Dale Earnhart Jr.
At our last entry things were going great. We had just returned from a family vacation and were excited to be getting back to a sense of normalcy. May 15 had Evan in for a 2nd PET/CT scan, and while we were concerned about a ‘warm’ area, it was not in the area that Mom & Dad saw as a slight thickening the size of a dime (~1.25 cm dia) under one of the skin grafts. We (parents & oncologist) determined to follow the course of wait and see. A month later saw the dime size had grown to nickel size (~1.75 cm dia.) The oncologist was called to arrange a consult with Dr. Marcus, the surgeon who had performed the wide margin excision. We saw Dr. Marcus on June 16, had surgery June 17, and today we learned the results of the biopsy/excision.
Spindle Cell Melanoma was back in the vicinity of the original mass that started the cascade of events detailed previously. We were also given the information that there was little doubt as to the certainty of the diagnosis as this mass was more uniform in cellular structure, and additionally that it had none of the genetic markers that would make it a good candidate for known positive outcome chemotherapies. Evan is too young by 8 months for the most promising therapy that it is understood to be so toxic that he would not survive the treatment, let alone the melanoma.
The medical consensus is a 2nd round of wide margin excision with a focus on wide margin of depth, especially the latisimus dorsi which had become infiltrated by this latest tumor; followed by some form of chemotherapy to be determined as information is gathered from pediatric cancer doctors from around the US.
While we know of the proposed course of action, this family is in need of two very important things: 1. Regardless of your faith, we need your thoughts and prayers that Evan may be healed, and that we might be strengthened for the fight to come; 2. Information, any and all information on Spindle Cell Melanoma presenting in Children with Nevi.
Thank you for your time and continued love, it means so much to each of us.
At our last entry things were going great. We had just returned from a family vacation and were excited to be getting back to a sense of normalcy. May 15 had Evan in for a 2nd PET/CT scan, and while we were concerned about a ‘warm’ area, it was not in the area that Mom & Dad saw as a slight thickening the size of a dime (~1.25 cm dia) under one of the skin grafts. We (parents & oncologist) determined to follow the course of wait and see. A month later saw the dime size had grown to nickel size (~1.75 cm dia.) The oncologist was called to arrange a consult with Dr. Marcus, the surgeon who had performed the wide margin excision. We saw Dr. Marcus on June 16, had surgery June 17, and today we learned the results of the biopsy/excision.
Spindle Cell Melanoma was back in the vicinity of the original mass that started the cascade of events detailed previously. We were also given the information that there was little doubt as to the certainty of the diagnosis as this mass was more uniform in cellular structure, and additionally that it had none of the genetic markers that would make it a good candidate for known positive outcome chemotherapies. Evan is too young by 8 months for the most promising therapy that it is understood to be so toxic that he would not survive the treatment, let alone the melanoma.
The medical consensus is a 2nd round of wide margin excision with a focus on wide margin of depth, especially the latisimus dorsi which had become infiltrated by this latest tumor; followed by some form of chemotherapy to be determined as information is gathered from pediatric cancer doctors from around the US.
While we know of the proposed course of action, this family is in need of two very important things: 1. Regardless of your faith, we need your thoughts and prayers that Evan may be healed, and that we might be strengthened for the fight to come; 2. Information, any and all information on Spindle Cell Melanoma presenting in Children with Nevi.
Thank you for your time and continued love, it means so much to each of us.
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