Thursday, January 17, 2008

Surgery, Part II?

It’s seems such a short time since we updated the blog. Time has seemingly stopped. New Years Day was truly a new beginning, amazing, joyous; yet we waited for the other shoe to drop. Such awesome news could not be left untarnished. From the first news in November we knew that this would be a long road. And then it happened, January 3, late afternoon. A simple phone call with big trouble attached. All phone calls from doctors are distilled in an instant, the essence and nature is encapsulated. Inside that capsule is all the information that an hour office visit could not cover. On January 3, Evan’s Oncology team shared its next step in his course of treatment – additional wide margin excision of the original site, a surgical consultation had been set up for January 17, 2008.
The team representative was open to forwarding our request for divulging the information and discourse that led to the team’s recommendation. He was also interested in finding out what we had uncovered in our own research. Since that time we received the pathology report from NYU and the team organized a meeting for January 18, 2008.

Having done much academic research into spindle cell melanoma we can tell you a number of important points. 1. Medical Article research is not for those weak of mind, heart, spirit and sight. 2. The typical age range is 65+ 3. The treatments in order of preference are wide margin excision with sentinel lobe biopsy concurrently, followed by radiation therapy and finally chemo-therapy. 4. Pediatric patients in the 10-20 age range have been treated very effectively with high dose interferon (Chemo) secondary to initial wide margin excision. 5. Cancer is a cellular level problem that is derivative from genetic restructuring 6. There are no protocols for a patient Evan’s age with Evan’s condition 7. Radiation is not an option for Evan as it would likely trigger additional genetic abnormalities in the nevus tissue surrounding the ‘site’ 8. Chemo is not an option for Evan due to the likely negative outcome (inability to survive the treatment) 9. Protocols are developed to guide the best outcome for the patient. 10. Each of Evan’s doctors ultimately wants Evan to both survive and thrive. 11. Cancers are insipid, deadly, and unpredictable and they continue to baffle medical professionals. 12. The worldly decisions on Evan’s care reside in our hearts and minds as we bring together our research and the advice of his medical team. The ultimate decisions lie in good hands far removed from this situation and yet as close as a comforting touch, a smile or a gentle word.
Two articles we located and forwarded to the team have to do with the genetic markers associated with melanoma in the one; and in the second, the presence of nodal growth in nevi which mimic melanoma down to the cellular level without behaving like metastatic melanoma.

The pathology report from NYU found 8 distinct and separate cellular morphologies in the tissue samples. Melanoma was found in only one section of one slide of one of the ten original tissue blocks, tissue block 7. The topography of the mass, cross referenced with the original pathology report indicate that block 7 was located through one of the nodular growths which was secondary to the trauma inflicted over Labor Day weekend. Most troubling was the detail that the melanomatic cells were located in the area of mass which had infiltrated the underlying skeletal muscle.
As we write this entry we are assembling a list of questions to be asked. The answers will be digested, ruminated and prayed over, then we will reach a decision on whether we will adopt the team recommendation or if we will seek a second opinion from another team. Our challenges going down this road are that time might allow any remaining cancer cells to reestablish themselves, that a second opinion will render the same course of action, that as the number of ‘knowledgeable’ doctors is so small that personal opinions about the perceived snub might jeopardize ultimate care.

The Questions

  1. What exactly are you proposing?

  2. When? 10, 30, 60, 90, 180 days

  3. Where What exactly are you looking to excise? How deep? How wide? What structures?

  4. Why are you recommending this course of treatment at this time?

  5. With a negative scan, what is the motivation to excise further?

  6. What were your thoughts on the articles which were sent to Dr. Greiner?

  7. Are you open to a genetic study of the tissue from block 7?

  8. Please provide copies of:
    PET/CT Scan

  9. Why are we having to ask for information?

  10. Do we need a patient advocate?

  11. Proposed course of treatment, monitoring and observation?

  12. In patient, out patient, general anesthesia?

Now we will focus our attention on the hero of this little North Carolinian saga. Evan continues to gleefully enjoy his new found sense of confidence. In the last couple of weeks he hosted his first sleepover, his remarkable guest was Tucker. The sound of their laughter would cause a stern Greek statue to smile.
With the knowledge of the surgical consult he demonstrated his acute sense of perspective when he said, “So they want me give them total control and not let me make a decision about my body.” The knowledge of the appointment and its implications have somewhat colored the little man’s behavior, but “Buddy” (Nickname from the Hogg Family) has basically been himself, back to playing soccer, practicing trombone, and building Lego’s. It’s all built; from the xenophobic based Mars Mission series to the new instant classic Indiana Jones series.
School continues to be a source of intrigue and fascination without being overly challenging. In past years we have always sought to have his teachers challenge him, but with the events of the past 2 months, we think that someone has a much more important plan for him.
Evan entered the science fair last year with an entry in robotics, and got hooked on the competition. This year he wanted to compare LED lighting with regular bulbs. It has been a great project with Evan writing to a local LED manufacturing company, they sent him some great material. With the project built, the experiments run, the data collected and the display board built, Evan faced his first critique and hurdle in the preliminary review by Dr. Brock. She was tough, and left Evan reeling; but still standing. Evan thinks that she was tough to help prepare him for the next steps. We’ll see how he does and report back later.
Please pardon the tardiness in the timing of this post, as you might tell we have been distracted. We trust that you all will appreciate the latest pictures. Thank you for your love, comments and prayers.

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