Thursday, May 28, 2015

20 months NED!!!

I apologize to my blog followers for being such a crappy blogger lately!!! I haven't blogged in months!!  I have received messages on Facebook from readers wanting to know if everything was ok with Steve since I haven't blogged lately.  Everything is indeed good!  Steve is now 20 months NED!!  We have had so much going on in our family that it's been easier just to skip blogging. I keep my family and friends updated, but I know I have so many readers that don't use Facebook and/or aren't friends with me on Facebook. So, I do apologize! 

On May 13, 2015 Steve received the results from his latest scans....NED....No Evidence of Disease!!! Steve's doctor, Dr. Patrick Hwu (MD Anderson), has now suggested that Steve move to 6 month scans.  He is confident that Steve's melanoma will NOT come back, and in the event that it does, there are so many things they could treat him with now that they didn't have when he was diagnosed in 2012.  While this is extremely comforting to hear, we all know that the "black beast" can always come back.  We actually know several warriors that have went 2+ years being NED and then had the melanoma return.  But, we like to live life like melanoma is behind us.  While we will ALWAYS be melanoma advocates, we just want to LIVE!  We have been enjoying traveling, hanging out with friends and family, settling into our home that we bought last year, watching our 4 year old "graduate" Pre-K and just everyday "life" stuff.

As you may have read in my last blog, my older daughter, Sadie was diagnosed with mosaic Turner Syndrome in December of 2014.  All of her medical exams turned out great!  She has none of the problems (as of yet) that many Turner Syndrome patients have (heart, kidney, hearing, etc).  Sadie is 4'8" and will not grow any taller.  That is the average height of a girl/woman with Turner Syndrome.  We took Sadie to a reproductive endocrinologist regarding the fertility issues that Turner Syndrome causes.  Sadie's lab work showed her to be in pre-menopause (at age 13).  We quickly got her started on fertility medication for egg retrieval.  She has been through 2 cycles/retrievals.  Each retrieval yielded one mature egg able to be frozen for future use.  So, she currently has 2 frozen eggs and will likely start another cycle for another attempt sometime next month.  There is a 3 day Turner Syndrome convention in Kansas City later this summer that we are considering attending.  Being such a rare condition, we are hoping to meet some other girls her age that she can keep in touch with over the years.  

Please be patient with my lack of updates.  I will try to update more often, but they will likely just be updates on LIFE :)  Like I mentioned, we will ALWAYS be melanoma advocates.  I still advocate weekly (some may feel like it's daily) on my Facebook page, we have a walk supporting AIM at Melanoma coming up next week in Galveston (feel free to donate here), we are attending a melanoma symposium at MD Anderson in August, we have the AIM at Melanoma walk in Houston in September and I was recently contacted by a very large pharmaceutical company to work with them on some melanoma awareness campaigns.  So, we are still very busy with the melanoma world!!! 

If any of my readers need to/want to contact me, you can always reach me through my Facebook page (there is a link in the sidebar).