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.
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.
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.
- What exactly are you proposing?
- When? 10, 30, 60, 90, 180 days
- Where What exactly are you looking to excise? How deep? How wide? What structures?
- Why are you recommending this course of treatment at this time?
- With a negative scan, what is the motivation to excise further?
- What were your thoughts on the articles which were sent to Dr. Greiner?
- Are you open to a genetic study of the tissue from block 7?
- Please provide copies of:
- Why are we having to ask for information?
- Do we need a patient advocate?
- Proposed course of treatment, monitoring and observation?
- 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.