Wednesday, December 31, 2008
An hour after the last post, chemotherapy was restarted, as expected the annoying itchy rash returned, but Evan had been sedated and slept through the rash without any anxiety or itching. And 30 minutes later, the rash resolved itself. Chemo was kept running at 10 ml/hr through the night without incident. Evan woke on Tuesday morning wondering why he was in the hospital and when he could go home, ate a good breakfast and tried to patiently wait for the infusion to be complete. Starting at 9:00 am the dosing was increased 10 ml/hr until 2 pm when it was moved to 60 ml, and then to 100 ml/hr for the last hour of medicine 1.
In preparation for medicine 2 Evan began to develop hives, itching and anxiety again, at the same time as a pre-med was being administered. This was the same medicine which had been hung in premed the other 5 attempts at starting chemo, and the one med which had not been running during the day. Ah Hah! As we have again experienced the same reaction at home this evening when he took the medicine for some nausea onset, we believe that this will lead to a positive change moving forward. The second medication went in without trouble as Evan had been given an ant anxiety medication that sedated him for the evening which only became problematic when we had to move him from car to house when we got home. Today has been quiet and relaxed, a nice surprise of opening up two boxes of games and toys from Kids Wish Network.
We hope to be going to San Diego next week (Assuming blood counts are in line) to visit Legoland thanks to Kids Wish Network. It will mark a great way to start 2009.
A look back on this year is not easy, but upon closer inspection we can find some real nuggets of gold. The type of gold that you can’t buy or sell. The crafting of this gold that takes hours, days and weeks to work into wonders of strength and beauty. This gold is the color of friendships (far and wide) and family (near and distant). This gold is love, its source is Our Father in heaven. It is not all that He is; but it is His medium of choice for us to work in. And His example to model after is stunning, beautiful and timeless. And more important is the fact that all we have to do with this material is to acknowledge its source. His pleasure is in seeing us try, and like a parent watching a child finger paint He enjoys the look on our faces when we smile at doing something ‘pretty’ on our own..
This year we have received the gold of love in abundance, and we hope that through this writing and Evan‘s story; that you might take some of our gold and share it with those around you. And now we wish you many blessings for the coming 12 months, and we’ll be sure to post pictures of LEGO’s in abundance upon our return.
Monday, December 29, 2008
This is the other shoe dropping. For the past 24 days Evan has lived an almost idyllic first round of chemotherapy. There were some initial side effects; mild nausea and some minor aches and pains to name them. Otherwise he made it to school 9 of 10 days, got his homework done, made it to his Pack Meeting, celebrated Christmas at home, and built LEGOs everyday thanks to some very generous friends and Santa. To top off the last day before his next course of chemotherapy he finished building the computer for his science fair project. His blood counts dropped as expected and then began their recovery. The only downer was his hair falling out on Christmas Eve. Even that challenge had been lessened by pre-cutting his hair with an electric trimmer, and his friends (Jack, William, and Andy) shaving their heads, and his dad, Den Leader, and Assistant Pack Leader also providing follicle support.
And then there has been today. It started out relatively normal; a little sluggish out of bed, breakfast on the fly, mom and dad slugging coffee on the way to Chapel Hill. We were greeted with good news, while a tape measure is not an overly reliable measuring tool for medical purposes, the tumor has apparently responded well to the first treatment of the chemotherapy protocol. Evan took his premeds like a champ, and his blood values came back as strongly as the first day he had chemo. Then things started to happen out of the ordinary. An unfortunate initial reaction to a premed - vomiting. Then there was a 2nd reaction to his first start of chemo (Evan’s protocol calls for one drug of 572 ml to be administered over 3 hours, and a second over 1 hour. The first drug has been known to cause anaphylactic shock as an immediate side effect and so there is considerable premedication) This second reaction involved hives, vomiting and a very fast heart beat. After stopping infusion and restarting at a lower rate there were 2 additional reactions and the determination that the dosing would have to be much lower slower and that Evan would need to spend the night.
Since that determination, the chemical cocktail has been enhanced with a variety of anti-nauseals, anti-histamines, H2 blockers and anti-anxieties in an effort to start the medications in a manner that will not create a reaction. At the planned rate of infusion for attempt number 5 (it might be 6, I’ve lost count) it will be another 40 hours before the first medication is complete, that is before we get to medication #2. That would put discharge at 2 pm on New Years Eve. Happy New Year!
Thank you for the ongoing blessings of your prayers - Evan and family.
Monday, December 8, 2008
On Monday 12-1-08, a one hour operation resulted in a port-a-cath central line being placed for easy chemotherapy administration and blood draws. The operation was successful and without complication or issue. Chemotherapy had been slated to begin Monday 12-1, then moved to Wednesday 12-3 and finally to Friday 12-5. The delays were directly related to making sure Evan’s care came first. The chemo cocktail is a rare combination in pediatrics and requires close attention, considerable premedication and access to a ‘crash’ cart (In ~20-30% of patients, there is an anaphylactic reaction requiring immediate emergency medical attention, the crash cart has all the necessary supplies for an emergency resuscitation.) For all the preparation the most anxiety came from the premedication. The high doses of premedication to avoid the worst side effects of the chemotherapy resulted in an anxiety driven case of cramping sensations. This was resolved with Ativan.
4 hours of Taxol and 1 hour of Carboplatin and Evan was on his way home. Heavy doses of anti-nausea medications for 24 hours, coupled with rest and relaxation have Evan back to a relative normal for today (Sunday). Next round of Chemo set for 12-29-08 based on blood counts to be taken 12-15 and 12-22.
12-1-08: Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Well at least the nurses are nice, but Mom and Dad seem a little tense. Hey, there are some really cool things in the oper. . . . Dad, is that you? Am I done? And what was this for? What’s chemotherapy? No more IV’s, cool! Mom and Dad need to settle down, aren’t I the patient? Get over yourselves already. Oww! My chest hurts. Ahh. . . Tylenol, Ahh . . . Sleep
12/2/08 Tuesday - Pain, 12/3/08 Wednesday - Discomfort and port awareness, 12/4/08 Thursday - Anxiety, questions and when can they take off this gauze blob on my chest? 12/5/08 Friday. . .
Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Holy Toledo. . .they are going to poison me to kill a disease I don’t understand, what the . . . Are they insane? Nice try at the whole ‘comfort’ thing, Dad, Mom . . . Yeah, you guys go and talk to the doctor. . .Hey, nice lady, what are you doing with that port? Why am I on this bed in a separate room? Aren’t all the other kids walking around? Hey, something is not right. . . Something is really not right. . . Mom! . . . Dad! . . . My legs are cramping and I can’t stretch them out . . . Make it go away. . . DON’T TOUCH ME! . . . Now its in my arms and hands. . . MAKE IT GO AWAY . . . IT HURTS . . . DON’T TOUCH ME. . . . Yawn. . . . Sleeeeeeeep. Hey can I get my computer? Can I get some lunch? California Rolls please. When can we go home? The port access, gauze and nasty tegaderm are gone and I’m outta here.
12/6/08 Saturday - nice and easy, a little blasé, light nausea in the evening.
12/7/08 Sunday - nice breakfast, easy and light on the snacks, internet access and Nickelodeon. A shower - hot and sweet, a little nausea but basically back to . . . Hey my webkinz pets are still alive.
THE PARENTS VIEW:
Monday - Thursday 12-1 to 12-4 : When will this be over? Is this what it felt like for Abraham as he took Isaac up on the mountain? I would rather drink hemlock than have to do this. Where do I look for strength? Can you not cut me a little slack? Whoa! Wait up! A year of walking together, why are we taking separate paths now? Is this when personal interest overwhelms the need to serve others? That was ugly. Let us pray. We’ll need all the strength and connection we can get.
Friday 12-5: Off we go. He’s kinda tough to get up this morning, but maybe that’s best, we’re a little tense. Nice quite ride to the hospital and up to the pediatric oncology clinic. Infusion start in the ‘Code’ room.?.? Possible reaction. . . Dexamethasone . . . . Benadryl . . . Zoll Debibrillator . . . Crash Cart . . . ER Gurney . . . ANXIOUS . . . FEAR . . . EVAN WHAT’S WRONG? PRAY . . . PRAY . . . PRAY . . . ATIVAN . . . PRAY . . . PRAY . . . Sleep . . . Peace . . . Tension easing . . . Evan your back . . . California rolls, you bet . . . Let’s go home.
Saturday 12-6: Taking it easy, working together, friends with food and coffee. Managing nausea and fatigue, his and ours. Quiet movie night, Thanking God for our friends who have kept Morgan active and involved in her activities.
Sunday 12-7: Breakfast, writing, decorating the house, answering computer building questions, math homework, language homework, thinking about school. Reality of low blood counts and decreased immune system in 7 days setting in.
Sunday Evening and Monday Morning 12-7 to 12-8: First clear side effects challenges
To Thank you for your thoughts, prayers and love.
Wednesday, November 26, 2008
We would like to say ‘Thank you’ to a few special friends who have seen fit to be angels and conduits of God’s love and grace to us this year. This has not been a good year, and next year looms before our eyes; but we have been blessed and helped through trials both simple and small; as well as complex and overwhelming. Our neighbors continue to amaze us, not a one of them has gone unaffected by the economic downturn, and yet they freely offer all the help they can, they will come and pray with us, bring us brownies and even a turkey for our dinner on Thursday. Our personal hours are precious but they have volunteered hours so that the Research Foundation we envisaged is coming into existence. We are so grateful for your love and presence.
The Shaw University Football team played in the CIAA championship game on a bright shining day in early November. The game was played against the unbeaten Elizabeth City State University Vikings. And down on the Bears sideline was Evan with his Shaw Alumni friend, Willie Gary. But it was hard for Evan to decide who or what he was most thankful for: That the Bears won, that he got to high five all the players coming on and off the field, or that he made a brand new friend in Mr. Gary’s Godson. What an awesome day.
Thank you needs to be shared with Pastor Bill. It would be so easy to smother a child with love at church. It would be so easy to ‘show’ how much God loves you by singling out the little boy for attention and pity. It takes a stronger more discerning spiritual leader to recognize that normalcy held in a sanctuary may be the greatest form of support a church can provide.
We give thanks for Doctors who work so hard, and the results of the latest MRI scans. The MRI was to determine that the mass could be tracked independent of the surrounding tissue, and that there had been no metastases to other parts of his body or brain. Both prayers were answered. The MRI defined the mass and bench lined some questionable areas, and it showed no distant metastases.
And we thank God every day for the love and prayers for all of us being offered from New York to San Diego, from England to Israel and from New Zealand to Brazil. And we will ask for special prayers this Saturday, 4 pm EST (-5:00 GMT) when we have a Service of Healing at our church Holy Cross Lutheran in Clayton (2920 NC Hwy 42 W, Clayton, NC 27520) This is being done in anticipation of the treatment plan being put into place starting December 1. On that Monday, Evan will have a central line catheter surgically implanted under his skin for easier access for delivery of chemotherapy which will start on Wednesday.
It would not be right to share thanks to the key people if we did not mention the teachers, staff and administrators at Wake Christian Academy, Evan’s school. Mrs. Carr and Mrs. Sauls are taking Evan’s academic challenges in stride. Mom, Dad, Teacher and Principal sat down and worked out a plan of action for Evan to stay on top of his work, in touch with is class and on track for his future. In a similar manner Dad spoke to Evan’s class and helped answer the amazingly insightful questions about what was happening to their classmate, and what was yet to come.
And lastly but not least on our short naming of a long list of those we love; are Morgan Butzow, Evan’s piano teacher; and Dave Cawthorn, John Biro, Tim Cattrell, Rick Beare and Blake Ball - these men are closely associated with Pack 24 of the Cub Scouts in Clayton. These two away from school activities are the highlights and focus of many enjoyable moments not at home and not at school.
Happy Thanksgiving, and please enjoy this clip from Evan’s piano recital November 22, 2008 at Meredith College in Raleigh. Oh the joys of belting out your favorite tune on a 9 foot Steinway.
Monday, November 17, 2008
In many ways this is a fitting time frame. It is a year to the day from the first surgery. The crisp fall air has given way to way to the first icy gusts of winter. For those enjoying collegiate football: Its OSU v Michigan, or the SEC or ACC championship, or perhaps USC v UCLA. Whatever your favorite gaming analogy; we see things from David’s viewpoint as he looked up at Goliath. It doesn’t look good from the outside, but we now feel an inner peace. The team is in place and the plan is coming together. In our corner we have guts, skill and compassion coupled with a fiercely resilient champion. In the opponents corner is a locally aggressive recurring mass with a unique array of genetic markers and histochemical signs with a sole apparent desire to take the champions life.
It was almost a year ago that the first entry to this journal found their way to the web. At that time we knew this war was akin to a marathon; now that we’re well into to run, we feel the aches and pains, the constant jarring rhythm of the road, and the cruel attacks on the psyche’s will to finish the race.
Helmuth von Moltke, the Prussian Field Marshal who became the German Chief of Staff in the 1850’s is credited with the quote, “No battle plan survives contact with the enemy” Those of us with a more modern Judeo-Christian outlook modify this to, “If you want to hear God laugh, share with Him your 5 year plan.” While this is no laughing matter, and keeping von Moltke’s adage close at hand we will share Evan’s treatment plan as we understand it.
It all starts next Saturday with an MRI. This will be the last best chance to find an identifiable tracking mechanism for the tumor. It will also serve to see if there have been any metastases of disease to other areas. As we understand the process, the MRI will determine a tumor resonance number, and that number will then be used as a benchmark on later scans to screen for recurrence.
At a time to be determined by Evan’s UNC treatment team (Dr. Julie Blatt – Pediatric Oncology; Dr. David Olilla – Melanoma-Surgeon; and Dr. John Van Aalst – Pediatric Plastic) he will begin a course of chemo-therapy to attempt to shrink the tumor. After this treatment, Evan will undergo an operation which will target not only the tumor, but any tissues associated with the tumor. The terms used for this sort of surgery are ‘aggressive’ or even ‘radical’. The goal is not to experience a bout of the woulda-coulda-shoulda’s at some later date.
Once this resection surgery is complete, there will be a reconstruction of the resected area. This will likely involve the unrolling of muscles surrounding the area like unrolling a Swiss cake roll. This flap reconstruction is aimed at returning full function to any affected muscle groups. In an almost cruel ironic twist of medical reality, this reconstruction will likely hide any recurrence of disease from visual identification. Ironic because it is only through seeing the mass grow back that we have been able to identify a recurrence.
Following surgery, there is likely to be a follow up course of adjuvant chemo therapy to target any remaining cells left behind after surgery. This plan as presented will take 9 months.
Yeah, Yeah, Yeah, but How’s Evan doing?
Evan continues to put up a brave front, but some of the façade on the walls is beginning to crack a little. One of his most endearing traits from a parents standpoint is his amazing tolerance for taking in negatives without responding; however, just like his Uncle David in Canton, when he blows you need to take cover. As we have kept him informed as to processes, meetings and appointments he is up to date on all aspects of his situation. We refuse to lie to him which can be extremely challenging when he asks incisive hypothetical questions about treatments and outcomes.
Evan has made new friends with others who are battling cancer. And those contacts are both reassuring to him and encouraging to others to see his smile and hear his infectious laugh while marveling at his insights, wisdom and resilience. These ongoing interactions with other soldiers in this life and death battle are seen in stark contrast with the relationships with teachers and classmates.
There exists a frustration of failed understanding that interferes with attempts at normalcy. Two main avenues of peer expression occur: Pity without purpose or understanding (Well intentioned sympathies expressed in painful ways) or a complete lack of compassion due to ignorance or choice.
How would you interact with an obnoxious unintelligent bully who does not have the interest in showing any compassion even if such a capacity existed? And before the testosterone rises to the suggestion of giving the miscreant bully a good thump in the nose; Evan has learned to modify his behavior not to resort to violence in conflict. (It should be noted that as cracks have appeared in his façade the rationalizations of events involving violence has rivaled current, former and future US Presidents for inventiveness) Let’s just say that a 9 year old boy should not be hindered with the basic understanding of stress – Where the human mind overrides the body’s basic desire to thump someone who richly deserves it.
Other than the people Evan has been enjoying school, relishing in his country report on Wales, reading lots of books (Start Wars, Technical how to manuals, fiction) and is gearing up for his Science Fair project. Components are being acquired; furniture is scheduled to be modified; and practice is occurring. The latest joy of course involved Microsoft. Evan modified his micro form PC and switched out the CD-RW drive for a DVD superdrive. Because Windows recognized a major component change, it demanded to be reactivated. You should try explaining the intricacies of intellectual property rights and their piracy and the resulting attempts at controlled commerce in the digital world. It was thankfully reactivated with the steps associated with a new computer build – one component added at a time starting with the keyboard.
Cub Scouts has been a wonderful distraction for the past year, and Evan is on track to earn the Arrow of Light based on his accomplishments to date. With the schedule of events for the coming year we are hopeful that he will continue to push forward in his pursuit of this honor.
As a family we face an uncertain future. If we all look closely at this statement it is redundant. The future is unknown to us because we have yet to experience it; so by definition it is uncertain. And yet in the midst of this current crisis we have found comfort and to varying degrees peace. At times of crisis and stress we all face the internal battle between fear and faith. That battle interacts synergistically with the conflict between hope and despair. It has been said, that faith ain’t faith till it’s all you have left to hang onto. But Faith without the knowledge of what to fear is not tried nor strengthened from the trial it is but a flimsy aphorism upon which we state our beliefs. Show us the person who has weathered the storms, been purified in the crucible, and let us feel and behold the faith of that person. In that person we may find a ‘childlike’ faith, in that person cynicism and sarcasm die deaths on the altar of faith and hope born not of idle imaginings, but of the fiery & frosted furnace of real life and real adversity. That person for us is Evan. We are just telling the story.
If you desire to help beyond your thoughts and prayers, please contact Heather Wray firstname.lastname@example.org for details about Evan’s Fund or the Melanoma-Giant Nevus Foundation.
Wednesday, November 5, 2008
Today Evan sees Dr. Julie Blatt at UNC this morning and we humbly ask for your continued prayers for healing and discovery.
Monday, October 27, 2008
The advice we sought was requested without a definitive diagnosis; we asked for a gut instinct. What we got was a kick in the gut. The gist: seek a skilled cancer surgeon familiar with both GCN and sarcoma resection; and a skilled reconstruction/plastic surgeon. Together they would perform a wide margin excision of all potentially affected tissue and reconstruct the body around the hole that would be created.
We could rant, cry, or scream; We’ve done that all before, and We’ll likely do it again, at an appropriate time; however, that time is not now. Now is once again a time for action. Our plan is simple: Pray - for guidance, wisdom, and intersession. Do the research, consider a team, have different tests ordered and completed, and pray some more. Not necessarily in that order. We did not hear the news we wanted to hear on Friday; but we got sound advice - no matter what the mass is, we must come up with a reasonable plan for approaching its existence.
In summary. Evan has a tumor/lesion/growth; no doctor knows what it is; many know what it is not - including normal, melanoma, sarcoma, proliferate nodule; Our quest takes two paths simultaneously: What is IT? What to do about IT? In pursuit of the answers we return to North Carolina, and UNC Chapel Hill.
Your continued thoughts and prayers are a blessing and constant source of comfort to us all. We shall continue to keep you informed of personal and medical news as it arises.
Tuesday, October 21, 2008
Let us start at the beginning. First and most importantly thank you God. For those who are new to our story, we have a deep and profound faith in God and a strong belief in our understanding of His interactions in this world. At this point it would not be too strong a point to say that we believe in miracles of divine origin; and that many of the doctors and scientists who we have dealt with, do not. None of this story, or our role in it would be possible without divine intervention. It began almost a year ago, and now has Evan scheduled to see Dr. Marghoob at MSKCC in New York City on Friday. It also has us waiting for a Christmastime arrival of news on a second round of genetic testing being done.
For those who offered prayers that we would be able to schedule an appointment in NY, thank you. It was not easy to get done, and without your encouragement and persistence, it might have been impossible. For those who have been following the ‘new’ science of genetics and its impact on Evan’s diagnosis/prognosis, thank you. The biopsy from 9 and a half years ago was identified, and had not been destroyed, and has been sent to UCSF for Dr. Bastian’s next experiment which will help identify if the cells from 9.5 years ago have the same lineage as those taken last November. We have yet to hear in the results from the comparison of November ‘07 to June ’08, but that bridge can be crossed at the same time as this next round of testing.
It seemed that scheduling was the easy part after it was done, and we faced the realities of dwindling resources and a trip to one of the most expensive destinations in the world, New York City. On the day we began to make arrangements to go to New York, we were hit with an unexpected personal economic challenge; the author was laid off by his employer. A good friend told us that this was a ‘panic’ situation, but we knew what we had to do for Evan, and nothing was going to get in our way. We made plans and got on our knees and were at peace with what would happen next. This was not the first time on our knees, nor will it be the last.
Those named next in this story would likely not wish for the credit, rather they just wanted to do what they could to help Evan. When we had to go to Texas in July; thanks is extended to Nana and Poppa, Granddad, Beth and Bart. Each of you and your offerings were an answer to our prayers. To each of the doctors we have encountered who treat Evan as a person, not just a ‘cool’ science experiment, thank you. Each of you is an answer to prayer. When we asked for monies to help defray medical and travel expenses; Val, Roger & Rex your help has funded the genetic testing to this point; Joe, Kelli, Dustin and the whole crew at Cape Fear Marble and Tile you helped us retire high tech testing co-pays; James, Denise & Blake and the WakeMed Health Park family your generosity has only been exceeded by your prayers. Each of you is a member of our family or such close friends that you might as well be family. And this would be a great end to this story, but . . . God has not just filled our cup to overflowing, He has taken our cup and dropped it in the barrel. We have not been blessed with just a spill; we can swim in the sea of blessings that have been poured out upon us in the last week.
We understand that the two most important commandments are: To love your God with all your heart, soul and mind; And, to love your neighbor as yourself. Many ‘smart’ legalists have thought, and at least one said, “But, Who is my neighbor?” The answer to the question is shared with us in the parable of the Good Samaritan.
Now, let me tell you of our neighbors; near and far, real and figurative. I will start with our neighbors in our subdivision who under the guidance and inspiration of Heather, a mother of 3, is in the process of raising awareness of Evan, the hope he represents, and in raising funds for medical, expenses, travel and research. Let me also tell you of our school ‘neighbors’ Tim & Debbie, Sheryl & Todd, Sharon, the Elementary MIT group, and the many teachers; all who pray for Evan, our safe travels and constant encouragement. They also help transport; provide housing and guide Morgan while we have/will travel.
But what do you say about the neighbor you have never met? Till last Saturday. What is to be said when that neighbor offers to fund a medical consultation visit in its entirety on the word of a fellow believer? 10 days ago, sight unseen, because he sensed God calling him to respond. How do you react to that person inviting his closest friends (Law partners, University Trustees, Rev. Al Sharpton, and fellow alumni of his university) to pray for Evan? His name is Willie Gary, and Evan is proud not just to call him neighbor, but friend. We see him as a symbol of God’s all powerful color-blind grace and mercy, a walking example of blessings being shared beyond those being received.
Saturday, September 27, 2008
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 . . .
Thursday, September 11, 2008
In the meantime, we felt a brief musical interlude was in order, followed by a biographical snippet from Evan’s sister Morgan.
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?”
Sunday, August 10, 2008
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
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
Wednesday, July 9, 2008
Small Group at the Shrine of the Bat
Friday, July 4, 2008
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 who 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 .
Thursday, June 26, 2008
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.
Sunday, March 23, 2008
According to church calendars, you will have to wait over 220 years before you experience another Easter this early in the year as today. It might seem as long since there was a post to this blog.
When we last left the hero of our story, he was returning to school, anxious to reintegrate and in preparation for his first trip to Orlando and Disneyworld. At the same time on other fronts, parents and friends and onlookers eagerly awaited the arrival of news regarding the health of recently removed tissue form Evan.
As the dateline indicates, in a serendipitous/coincidental/Godcidental turn of events, this highest of high holy Christian holidays has seen us receive on biopsies and the beginning of the adventure of a lifetime (at least that’s what the marketing folks at Disney say).
With no further ado, while 3 pages in length covering in excess of 40 tissue samples, all results were deemed to be negative for melanoma of any type. That is not to say that all things are perfect or that all things are known. Rather, for the eyes, brains, and knowledge base of the greatest minds in this arena of medicine there will always be unanswered questions about what is going on in the tissue in Evan’s back. But currently we have stepped back from the precipice; and with that news, what better time for us all to take a vacation and celebrate a rebirth of life in our family. No better day of the year could have been chosen.
As a famous admiral once said “I have not yet begun the fight”, so the same could be said for Evan and his life journey. Up next, serial PET-CT scans, to confirm prior diagnosis and then we will fall back into a regular regimen of dermatology appointments and vigilant observation.
In the first posting to this blog in early December 2007, a five year timeline determines ones cancer survivorship status. With that in mind, Evan would like to invite you to the mother of all bashes, November 15, 2013, location, attire and theme to be announced at a later date. This may seem overly optimistic, but we have heard it said, it is very difficult to experience success if you do not plan for it.
All planning and forward thinking aside, many who we meet have been kind enough to comment on how well we have handled this as a family. Truth be told, we have not handled this very well at all, rather, we have entrusted the situation to our Lord; and the thoughts, prayers and well wishes of readers like you. Frankly, without the hope, prayers and gifts (time, food, a listening ear, and a supportive hug) we would have been a wreck. The words, “thank you” will never do justice to the gratitude we feel to all of you. This does not mean that the battle is over or that your payers would not be desired, instead, we would ask that you would now see this “race” as a marathon.
As commentators of this “race” we promise to do a better job of consistent and relevant postings, please forgive the delays with this post and chalk it up the editor’s unfounded superstitious desire not to tempt fate.
Coming soon – Pictures from the Orlando celebration.
Saturday, February 23, 2008
Segue; Evan celebrated his 9th birthday on February 16. He though his sister left for the weekend as his personal present, she actually was on a confirmation retreat. As parents we decided not to ruin the moment and share that she would be returning on Sunday. Each day is special and brings new joys, but birthdays are extra special, and so we had an Evan day. First there was the Lego at the foot of the bed, followed by a terrific breakfast care of Mommy, then we all (Granddad, Mommy, Daddy and Evan) went to see the Spiderwyck Chronicles. The day was complete with peanuts, steak and a Logan’s ‘Yee-Haw!’ The day was complete with an early bedtime before a busy and eventful week.
His favorite birthday present, a PSP from Matt and Angie has rarely left his side, and Evan loves to see if he can access the internet wherever he goes. He will do anything to get to http://www.lego.com/ . Monday was a full day out with Dad at work, Tuesday was the same. By Wednesday he was ready to stop dressing changes and have a try at going back to school. Half a day seemed just about right to start, and by Thursday he was back to full time (No PE/Gym or recess for a few more weeks). Thankfully Mrs. Hefner brought homework to Evan while he was off (Not so thankfully for him) that when he got back he did not have tons of stuff to make up.
Now we wait. We wait for results, we wait for bills, we wait for Disney World. It is unlikely that we will hear any results before March. The speed with which information was shared prior to full and consensus opinion could be established before means that we will patiently wait. Evan believes that he is going through this so that God can show the power of miracles in the world today. After all science has a hard time explaining so much of the circumstances around what happens in his body.
We have begun to receive the bills. These are not unexpected, although even the jaded parents with medical backgrounds have had a few face blanching moments upon envelope opening. Ah, the joys of an imperfect health system, caring parents, a sick child with a rare illness, and a political system where no one has the intestinal fortitude to meet the problem truly head on (but lest this blog take on a political tone, we digress) .
And then there’s Disney World. The confluence of Spring Break, a child’s requirement to visit the Magic Kingdom, and the replacement of hard wood floors has ‘forced’ us to retire to central Florida at the end of March. This will be our own Extreme Home Makeover vacation and we are all really looking forward to a little fresh-from-the-grove orange juice. Till we write again please keep each other in your prayers as we keep you in ours. Love Evan and Co.