Give Thanks & Thank you!

Today is Thanksgiving Day in the United States. Regardless of folk law, turkeys, posh looking Pilgrims with stiff collars and professional American football; the first Thanksgiving was less of a celebration of feasting success, and much more the appreciation of divine grace that they had been the recipients of a miracle that allowed them (the Pilgrims) to continue living. They thanked God not for turkey, corn or Native American friends (Indians to the less PC); they thanked their Heavenly Father for the miracle of continued life.
Today is a day of reflection in our house. After three years of struggle (almost to the day) we have been handed a miracle of continued life. Some will argue mightily that medicine and science have succeeded in Evan’s case. We do not discount this stance; but we also acknowledge that a power has been called to bear on Evan by no less that the effort of prayer. Those prayers have been yours, ours, and so many others who may just hear about Evan; and offer a quick word on his behalf in their conversations with God.
We cannot thank each of you enough for those words; however short, long, ugly or eloquent that conversation may have been. From those efforts we have received miraculous results. Both of Evan’s tumors have shown decreases in size of greater than 50% in very short time. Conventional wisdom is leading us to a reality that there will always be some residual scarring inside that we might equate with Jacob’s limp or Paul’s thorn for Evan; an ever present reminder that we are to be grateful recipients of a life touched by God. And a grateful heart touched by God has a greater responsibility.
Such a responsibility is not to stand on a rooftop praising God for our miracle. It is to pray for all whom we meet. It is to be compassionate and sharing with all who seek our counsel. It is to be a beacon of hope to those who feel lost and abandoned. It is to shore up the supports of those who have experienced loss beyond words; to share faith to those who face uncertainty.
Let us share the stories of 4 such people that you might offer prayers of hope, love and support; even as you may be reclining with your friends and family on this day of thanks.
Grant, 8 years old, and his family found out this spring that he had a brain tumor. After a valiant fight, Grant died earlier this fall. We know that he is in Heaven; but left behind are his mom, dad and older brother. Please pray for their peace during this tumultuous time, or offer a thought that they find hope and joy in the coming days and months.
Josiah, 14 years old and a talented athlete, and his family; found out early this fall that he had been diagnosed with malignant melanoma under unusual circumstances. His excisional surgery resulted in a status of NED (No Evidence of Disease) but they now face the uphill battle of getting a definitive diagnosis and treatment choices. Please pray for their insight and continued strength as they face a long uncertain road ahead of them, or offer a thought of thanks on their behalf while they push on in his battle.
Consider Rachel and her 2 year old son, just diagnosed with a malignancy associated with his nevus and NCM (Neuro Cutaneous Melanosis). He has begun a course of chemotherapy; and due to an extensive lack of study into this rarest of rare situations means that divine guidance for insights for their medical team is essential. A word for love, compassion and healing, a thought for peace and continued support would not be remiss.
Think of Chris who is Evan’s Sunday school teacher. She found out this fall that she had colon cancer. After surgery she now faces chemotherapy. She shaved her head to raise money for childhood cancer research and continues to teach Sunday school. Offer a thought and prayer for her continued courage and the strength of a husband who stands by her as a pillar of faith and service.
As you sit at your feast this afternoon, take a moment as you look at the plate of bounty before you and consider taking that time and pondering these words from Paul’s letter to the church in Thessalonica:

• We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor prompted by love; and your endurance inspired by hope in our Lord Jesus Christ.

And as you go forth from this day, know in your heart that we do not toil alone in our journey; and no matter the size, weight or other dimension of your burdens you too will find support, love and encouragement from your Father – even when it sometimes comes from and through your fellow travelers.
In closing, as we enter the commercial fray of this holiday season; We thank you for your continued support as our battles continue; And we offer prayers of hope, peace, joy and love to each of you - in, by and through the power of the spirit of the season, The Holy Spirit. Many continued blessings to you all.

Fish or Cut Bait

Two years ago Evan and parents went to the amazing and remarkable conference hosted by Nevus Outreach in Dallas. At that time Evan’s case was presented to the leading scientific experts in the field of pigmented lesions or nevi. The advice from that meeting have driven our path forward: keep looking, don‘t take ‘no’ for an answer, and keep on asking the hard questions.

Two weeks ago we went back to Dallas, and met new friends, gathered more knowledge, shared insights and hope and got re-energized by like-minded people to continue pushing forward. The meeting could not have come at a better time, the encouragement could not have been more timely, and the sincerity of a common faith of families affected by nevi is something that cannot be expressed in words.

This time we took our daughter who had her eyes opened to the fact that there were other people in the world just like her brother, and they had siblings just like her. And children and teens and adults talked and played freely in the comfort and knowledge that they were not alone, but members of a family. Yeah, we might be the family of 101 Dalmatians, but we love each other just the same; no matter race, creed, religion, politics, age, intellect or income. Love is a powerful, powerful weapon against darkness, aloneness and fear.

Timing is something that we do not understand but really appreciate. As we sat in a science meeting asking questions of experts; experts began to seek us out and asking us questions. And the dialogues lead to suggestions, and suggestions were relayed instantly to our team at UNC. And more conversations were started with other experts in other locations, and the entire conference was alive with citizen scientists conversing with the real scientists, each person learning from the other and building the body of knowledge that will lead to breakthroughs of peace and hope for families now and in the future.

But as we sat in that meeting, we received word that Evan’s experimental chemotherapy trial was not working. That we would have to go back to the drawing board and reevaluate all the options. This process was/is intellectually challenging, emotionally racking, physically tiring and spiritually draining. That has been the state of our house this week.

In this post we will allow you inside the process not so that you may marvel, or ask, “How do you do it?” but rather, if you see something that we have not, that you would speak up and share what you see. Your insights, thoughts and prayers are no more or less important than anyone else’s. When you have read through this post and you are willing to share, please email evan@e-colemans.com thank you.

The time to weigh options is upon all who are involved with direct care and process in the life management of Evan Coleman. These are not easy decisions to make. With each passing development and milestone (positive of negative) the pressures seem to mount. As his primary advocates we have decided to approach this recurrence with a more deliberate step by step process and we must periodically review the available information to better guide our decisions and to ensure that we are consistently acting in his best interests.

His medical team is geared to an either/or decision making process. The options are clear to this component: chemotherapy or surgery. There is at least a third option, known but not often considered, wait and see. And there may be many more options available but as yet unconsidered.

The debate: Medical options (chemo vs. surgery) vs. Parental options (action vs. inaction) the following is such a review of the situation and options.

The decision making process must be entered into with the overarching understanding that life for the sake of life is not a valid argument in and of itself. The quality (both longevity and enjoyment/pursuit of happiness) of life of the patient must be balanced against both treatments and outcomes. Fundamental ideas exist within the medical community: Hope is the objective of every meeting, every person has Evan’s best interest at heart, and no one wants to do him any unnecessary harm.

What we know:

1. The tumors are locally recurrent.
2. No known life threatening organ involvement – invasion/infiltration of solid or hollow organs
3. The tumors are not visible on Positron Imaging, but are visible on MRI and CAT.
4. The tumors are not recruiting nutrients in abnormal amounts (Nuclear Bone & Kidney/Bladder Scans)
5. That previous surgeries have failed in the attempts to address the recurrence of the tumors, and in fact may have contributed to the recurrence. This includes wide margin excisions by a highly qualified surgeon.
6. The previous presentation (from 7 months to 8.5 years of age) of the tumor process had exhibited a rapid growth curve that stabilized around 6 months from trauma. Since treatment was initiated in November 2007, there has never been a review of tumor growth rate following surgical trauma, until now.
7. The tumors have not responded to traditional or experimental chemotherapy.
8. The DNA of the tumor does not match any known melanoma DNA (Or other cancer).
9. Under the microscope the tumor cells look are consistent with nevus tissue with some mitotic and spindle elements that look like cancer if it were present in normal tissue. This is a gray area of cell science.

Medically there are several possible options although getting access to some of them might involve jumping through many hoops and cutting through a lot of red tape.

Chemotherapy

1. Taxol/Carbo FAIL – inefficacy
2. Temsirolimus/Depakote FAIL – toxicity
3. IL2 (Interleukin II/Interferon) ??? – ICU necessary due to high dose reactivity (14 doses, spaced 6-8 hours apart, 7 day rest period, and repeat for total of 28 doses over ~12 days)
4. Vaccine Trial

• Dependent of prior failure of other agent
• Late stage
• Clearance/waiver/acceptance
  

• Other Options presented via National Institutes of Health (NIH)

Surgical Intervention

1. 6^th attempt at wide margin resection with first removal of skeletal structure (Fat margin of L Kidney, Splenic border, External L Pleura, and sections of 10^th & 11^th ribs)
2. Removal of bulk of tumor in biopsy process to acquire live tissue for development of vaccine.(Done at vaccine developing facility – Bethesda. MD)

Motivations, Fears and Basis

Inaction may lead to metastasis and early death.

Continued chemotherapy is causing neurological & liver damage and is leading to increased risks of illnesses later in life .

Continued surgical therapy is validation of Einstein’s assertion regarding insanity, and will likely lead to early death.

Failure to comply with medical advice may lead to removal of valued counselors

Psychologically the entire process has worn increasingly upon Evan’s psyche and his hope is dampened by every failure.

NEXT

When reached this point in our discussions it was time to call upon more objective minds with the only bias being for Evan’s well-being.

First was asking Uncle Jon, the sustainability expert (sustaining Evan is right up his alley) and he pointed us in the direction of deep ambiguous questions of qualitative thought. Messy, deep, introspective, intangible questions of gut feelings based on information at hand without trying to match the quantitative information to our hopes or desires. He posed 4 thought provoking questions as a starting point to our investigation. They were: what are the stressors on our family, if you could remove one stressor, what would it be and why? Who would benefit from this action? Would this resolution allow other stressors to be removed?

Second on our list were Nana and Poppa, the medically experienced and smartest people we know to ask about science and medical processes. After they looked over the information you have now read, they directed us to start asking all the “What If” questions. At the top of our list is “What if Evan dies?” This question should be relegated to the bottom after all other questions have been asked and answered. So now we have Chemotherapy, Benign, Malignant, Discovery, Surgery, Vaccine, Interferon, and many others. Help us push that first question down to the bottom, send us you thoughts on “What if” Let us work through the possibilities and know that no question is too small or assumed to have been asked by someone else.

We meet with Evan’s medical team leader tomorrow to start the review process, but the real deadline for our review will be July 28, 2010 at 7:30 when Evan starts a series of MRI and CAT scans and when done with that we will gather for a team review.

Please keep us in your thoughts and prayers, and if you have the smallest idea of a question, please email us at evan@e-colemans.com Thank you and God’s many blessings to you and your family.

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