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.

Pay It Forward

The last 5 weeks have been as eventful as they have been maintenance of the status quo. Evan presented his LEGO Mars Mission compilation at Brick Magic, a nationally attended convention with over 8,500 visitors. The next day he started chemo therapy. Then he developed extensive mouth sores, stopped chemotherapy, had his mouth recover, and restarted chemotherapy.
In the meantime back at the farm his Granddad, inspired by Evan, entered the world of computing with a splash. He purchased an IPAD. And between ordering and receiving, he took a five day break in a series of private rooms at the local hospital. So that on one day in the last two weeks, we had the oldest and the youngest of our local clan in hospitals 20 miles apart. (Of course they were both praying for the health and recovery each other). And that is the short hand version of our interpretation of the old adage: The more things change, the more they stay the same.
It is nearly impossible to comprehend extensive mouth sores. Just one at the tip of a tongue or on a lip where a tooth rubs brings most of us to our knees such is the intensity and exquisite nature of the pain. To hold a mouth with five, then seven and finally eleven is beyond our grasping, and yet Evan took it in stride. That stride lost over two pounds of weight, and ate milkshakes as meals for a week, but none the less he was prepared to continue the treatment. It was his doctor, Dr. Blatt, who saw no need to hurt for the sake of hurting. She took him off the medications for a couple of weeks to let his mouth recover, and now has him on a half dose regimen for the foreseeable future.
But why to you might ask has this entry been titled ‘Pay It Forward’. It actually all starts with you the reader of this blog and ends when you are able to see where your love flows. This principle was portrayed in the movie by the same title, where a school boy is challenged by an inspirational teacher to come up with an idea that will change the world, and then to put this idea into action. The epilogue is: The good you give out may not come back to you, but the impact you will have on the world and the awesome experiences of a ‘giving’ journey are overwhelmingly enriching.
A quick recount of how you have enriched Evan’s life. Without the insights of a friend, who has since passed away as a result of the ravages of melanoma, Evan would never have connected with Kids Wish Network. Without Kids Wish Network Evan never would have been able to get to LEGOLAND. Without many other readers and friends, he never would have received a near complete collection of ‘Mars Mission’ LEGO pieces that he just displayed to 8,500 other LEGO enthusiasts. Without you, he never would have had the parts to build his mega computer for the science fair. Without Kids Wish he never would have met LEGO Master Model builders or Joe Meno of Brick Journal. Without the compassion, friendship and love of the staff at UNC he would have been hard pressed to keep going down the treatment journey.
It is remarkable at how the web of connections, compassion and love have cradled Evan and his family through these last three years. Evan’s dad went to high school with Evan’s surgeon who in turn was the mentor to Evan’s granddad’s surgeon. Even the garage door repair man’s sister went to school with his mom.
This time has not been easy, but we have an awareness that we are not alone, we are loved and there are truly positive things that seem to rise from the possibilities of the deepest depressions. Perhaps it is the Phoenix of hope that we see in our lives through our interactions with you, even if that is just reading these notes.
Evan would like to pay it forward. Each time he goes to the hospital he takes three things: a new book, a way to access the internet, and LEGOs. What he has seen when he arrives varies upon the pediatric cancer clinic emphasis. While the building is new and bright, the faces on the patients, parents and staff will run the gamut. Some are sad, some are grim, and some are angry. The doctors present smiles that sometimes mask the underlying concerns of mortal details. Nurses bring laughter and joy that is sometime muted by the serious nature of working with poisons and children. Happiness and laughter bring healing. A hospital where the realities of sickness and death are the predominant theme is a tough place to bring an environment of Living Life Large. Cue Evan to enter stage Left.
In January 2010, Evan came up with the idea of a Mega Build (taking a small LEGO Figure and blowing it up to 8 feet tall) The hospital has some large open spaces, Evan has friends in the LEGO world, people want to do nice things, etc. etc. Then the naysaying questions began: Why would the hospital do this? Why would patients do this? Who would actually build it? Blah, blah, blah.
First concept refinement: Build ‘Jabba the Hut’ eight feet tall, and when it’s time, have the kids and patients in the cancer hospital break it down. The visual and touch power to break apart a slimy evil being that represents how they feel about the cellular invader’s in their bodies would be delightful entertainment.
Second hurdle: Contact the decision makers share the concept and sit back and watch it happen.
Third hurdle: sitting back is not an option. The hospital is onboard, always looking for ways to enhance patient experience and raise awareness. LEGO world headquarters loves the idea, LEGO responsible for US marketing in a depressed economy where every hospital this side of Hawaii is clamoring for something LEGO is a different nut altogether.
At this point, 6 months into the idea phase and meeting this perpetual resistance was tiring. It was also the time the idea was shared with Nathan Sawaya a LEGO Master Model Builder from NYC, and Steve Witt the LEGO coordinator for the Americas. A combination approach was recommended: build the model for scale (there isn’t a LEGO Jabba figure) and begin a lobbying effort.
The idea was again refined. Why do this at just one hospital. There are many hospitals and many patients who would benefit from the project across the US if not the world. Secondly, LEGO can be heated to sterilization temperatures so that even patients in isolation can participate in building. It can be used as a fundraising and awareness event for cancer projects across the country. Bricks could be bought by corporations for publicity and donations. LEGOs can be acquired for pediatric units across the world.
Hurdle Four: The present. To build a scale model of ‘Jabba’, Evan needs ~5,000 bricks to make a model 2 feet tall and 5 feet long. It needs to be built in the next 60 days, transported to Washington DC for Early August and will cost (at $.30/brick)$1,500 to build.
We will be mounting an email campaign directed toward LEGO management in Connecticut that will start around August 1. If you would like monetarily help with this project, if you feel this is a worthwhile endeavor, any donation, small or large, would be appreciated. Please send donations payable to: EVAN’s FUND to 2664 TIMBER DR - STE 198, GARNER, NC 27529.
And now some pictures from Brick Magic

The Welcome Banner
Evan's Table

Tyler stops by

LEGO city

Evan builds for LEGO

Evan builds more 4 LEGO

Joe Meno admiring fellow adult fans of LEGO

Evan answers questions

Nathan Sawaya - LEGO Artsist