Sunday, December 15, 2013

It's OVER... for Now

WE DID IT!!!  Three years, 11 surgeries, 11 trips to Chicago, 40 fills and 12 expanders over 5 rounds, two infections, and one emergency surgery -- and it's time to sit back and rest INDEFINITELY.  We didn't make it as far as we had hoped with surgery #11, but we've gotten as far as we can for now.  Dr. Bauer's exact words were "It's time to accept that you're DONE!"  And just to make it official, I will NOT have a surgery on Dr. Bauer's calendar in 2014.  Yipee!

Dr. Bauer was able to work on some more private areas in this last surgery, but unfortunately could not remove any more from my back because my skin lacks the tissue and elasticity it needs for further excision in that area.  He wants me to spend some time (a few years at least) growing, and then he will re-evaluate and we can consider further excision.  For now, I think we are safe in saying that I am about 90-95% nevus free!!!  These last three years were more than worthwhile, and we are so thankful that we were able to accomplish this.   

To top off this good news, I am happy to report that surgery #11 was definitely the easiest surgery I have had thus far.  It was excision-only, which meant that I did not have to deal with drains.  What a blessing!  Pain was exceptionally manageable.  Indeed, I didn't take any pain meds after leaving the hospital.  Yup, I'm tough as nails!  And my incisions healed perfectly.  Everything looks fantastic!

So I'll be taking an extended break at this point, and I couldn't be happier about that.  It's time for me to live the life little boys should live.  To be the awesome little guy I am.  And to forget about doctors, hospitals, surgeries, drains, expanders, needles, lidocaine, and all the other things that go along with this process.  It will all be there when I need it in the future. 

I want to thank everyone who accompanied me on this journey.  Who prayed for me.  Who sent me good thoughts and positive vibes.  Who was there for us to lean on in tough times.  This road has been long, and bumpy at times, but we made it through.  And you definitely helped us along the way.

I also want remind you of why I've gone through these surgeries, and why we created this blog.  The underlying fear that we will always have is that I could develop melanoma because of my nevus.  The risk is approximately 5%, which may not sound like a lot, but to us ANY added risk is too much risk.  We are hopeful that the removal that's been done will reduce the risk even further, as Dr. Bauer was removing nevus cells from my inside body along with the nevus skin on top.  But continued prayers that I remain the healthy boy I am today are definitely requested and welcomed! 

A primary reason we spent time writing about my nevus and my experience was to keep everyone who loves and prays for me up-to-date about what goes on.  But we also created this blog to spread awareness and acceptance of Congenital Melanocytic Nevi, as well as any other unique condition that a person may find himself with.  It's certainly eye-opening to view the world from this side of the table.  The perspective we have gained is priceless.  And we hope that we have been able to share that perspective with you.  We are also overjoyed that this blog has helped others who have found themselves in my family's position.  Over the last few years we have received emails from parents who found this blog fortuitously, and it spoke to them in ways that only one nevus family can speak to another.  It's been wonderful being able to use this experience to help others.

On that note, we recently received an email from Emily Walsh, the Community Outreach Director for the Mesothelioma Cancer Alliance.  As our passion is spreading information and awareness about CMN, Emily's is to make people aware of the dangers, prevalence (even today), and science behind Mesothelioma.  Please check out Emily's blog and the Mesothelioma Cancer Alliance website, and help to pass it along.     

And as always, remember to check out for more information and to follow scientific discoveries with regard to Congenital Melanocytic Nevi and Neurocutaneous Melanosis.  And please, before shopping on Amazon, use the link on the Nevus Outreach homepage to transfer to the Amazon site.  6% of your purchase will go right back to Nevus Outreach, Inc., and will support me and all of my fellow nevus-owners.  This condition is rare, and the research is sparse. Anything and everything helps.  Thank you for your support. 

With all my love,



  1. So beautiful and well written! Especially for a 3 year old. ;-) Love you all, and congratulations on getting to this point in the process. You definitely deserve a break!

  2. Lovely! My son was born just a few days after you Joshua. Blessings XOXOXO