Home at Last!

Happy New Year! I am so sorry to have left everyone hanging in suspense over what happened in the last 36 hours, especially since we have been at home for the past 24. Those of you shoot vacation videos will understand the dilemma: Should I take the shot for others to see what we’ve done, or should I live the moment and share the memory. There is no real option for us, and unfortunately our e-mail server has been down and so the e-mail synopsis has not been as easily distributed. (Lizy puts out a short email with a play-by-play while it is my job to add the color)
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.

A Long Day's Night

Its 9:18 pm, Monday December 29, 2008 and as I write this I am sitting at Evan’s bedside in the Pediatric Intensive Care Unit (PICU) at UNC Hospital. In the past 10 minutes the night nurse and her assistant prepared the room for an overnight code. While this is just precautionary, it indicates in no uncertain terms the fine line between life and death that we are walking when it comes to Evan’s health. Today has been long, challenging and is not yet over.
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.

Hey, is the car cold or is it just me?

Over the past year this blog has chronicled the life of Evan Coleman as he has undertaken a battle with cancer. He is a bright (full of life and intelligent) young man with more courage in his little body than seems possible for his size. What has transpired over the past week and is ongoing as this is written might be termed the ’Transition’ from investigation to action. While surgeries before have had the stated objective of ending this war, no attempt has encompassed such a broad and sweeping attack, nor has his life been in more jeopardy than it is over the next couple of weeks. This entry has the potential to get away from a simple and clear explanation; and instead end up as a tiring emotional discourse. This unfortunately might best reflect the emotional and physical state of the Coleman home as it exists today. But instead we have assembled multiple perspectives to share clinical facts and raw emotions from both Evan and his parents.
THE CLINICAL:
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.
EVAN’S PERSPECTIVE:
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.

A time for Thanksgiving

Thursday marks a national holiday for all who call themselves American citizens. A national day of unity to give thanks to God for the bounty of harvest that we each reap as a direct result of the fortune of living our lives in the United States. And this year there is a much to be thankful for as a change in power at the top of the government has occurred in a peaceful and orderly manner. That may seem off base to many, especially in light of our current challenges; but we cannot imagine such an ordeal in a place like Zimbabwe or Georgia.
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.

Its GameTime!

The preparations are nearing completion. We have scouted the enemy and it is strong, wily and resilient. We have had a couple of practice runs, exhausted the experts, and the tryouts for the skill positions are complete. These few words summarize both the events of the past year and the events of the coming months.
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 hwray@nc.rr.com for details about Evan’s Fund or the Melanoma-Giant Nevus Foundation.

Friends, Neighbors, Baked Goods and Video

Thank you to Heather for getting this to happen (Link to video story below). And thank you to Heather and Amy for their work on the bake sale. The monies generated will go toward seed money for the MGN Foundation. There are many answer for other people wrapped in the mysteries surrounding Evan.

Today Evan sees Dr. Julie Blatt at UNC this morning and we humbly ask for your continued prayers for healing and discovery.

http://wake.mync.com/site/Wake/news/story/12499/community-rallies-around-boy-with-rare-condition/

Where to go from here?

Information continues to come in. A little here and a little there. Our latest information is encouraging, but the advice was discouraging. The information was that the tissue samples which have been genetically analyzed are neither melanoma nor sarcoma; however, the microscopic cell presentation indicates a sarcoma like growth pattern.
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.

In the latest episode of medically inspired geo-adventures of our hero; Evan ventured into the Big Apple. One more time, thank you to all who have so generously given that we can find time to distract him from 400 lb gorilla in the room. We would list the sites, but sometimes its just fun to see the pictures and put the sites in your own words.

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.