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)

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 something 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.

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 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 .

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