Tuesday, July 15, 2008

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

1 comment:

Brenda said...

I am so glad to hear that you all are getting some new information. It looks like there was also alot of fun!!!!!! Take care.