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 email@example.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:
- The tumors are locally recurrent.
- No known life threatening organ involvement – invasion/infiltration of solid or hollow organs
- The tumors are not visible on Positron Imaging, but are visible on MRI and CAT.
- The tumors are not recruiting nutrients in abnormal amounts (Nuclear Bone & Kidney/Bladder Scans)
- 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.
- 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.
- The tumors have not responded to traditional or experimental chemotherapy.
- The DNA of the tumor does not match any known melanoma DNA (Or other cancer).
- 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.
- Taxol/Carbo FAIL – inefficacy
- Temsirolimus/Depakote FAIL – toxicity
- 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)
- Vaccine Trial
- Dependent of prior failure of other agent
- Late stage
- Other Options presented via National Institutes of Health (NIH)
- 6th attempt at wide margin resection with first removal of skeletal structure (Fat margin of L Kidney, Splenic border, External L Pleura, and sections of 10th & 11th ribs)
- 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.
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 firstname.lastname@example.org Thank you and God’s many blessings to you and your family.