Guest Post - Journeys With Joshua

Hey blog friends!  I want to introduce you to a great friend of mine!  Christine started blogging just over a year ago after her second child, Joshua was born.  You can find a link to her blog, Journeys With Joshua, on my sidebar.  Here is her story...
 

Joshua, one-year-old

Journeys with Joshua is about a very special little boy that I'd like to introduce you to.  He was born in May of 2010 with a very rare, and surprising, congenital defect known as a Giant Congenital Melanocytic Nevus.  I say surprising because it cannot be detected in utero, and thus was discovered at birth.  The basic definition of this condition is that it is a large birthmark that has a heightened risk of developing melanoma.  But it's much easier to see what it is...



Joshua, 11 days old

This was shocking, to say the least.  As you can see, the birthmark runs from Joshua's lower back to his upper thighs, covering everything in between.  It also wrapped around his waist just slightly.  The smaller spots you see are called "satellites," which are areas of pigmented nevus cells as well.  They can develop throughout life, but have no known health risk.  Joshua developed around 80 of these smaller spots after he  was born.
Over the past year, Joshua's family has gained momentous amounts of medical information and has met other families worldwide dealing with the same condition.  Because this is such a rare phenomena (1 in 500,000 babies born have a Giant CMN), most doctors do not know anything about it.  Joshua and his family actually find themselves teaching the doctors!
The good news is that, in conducting their research, Joshua's family discovered a surgeon who is literally the best in the world in treating this condition, Dr. Bruce Bauer.  They feel extremely blessed being able to bring Joshua to Dr. Bauer, particularly because Joshua lives in Arizona and Dr. Bauer is in Chicago, IL.
The treatment most widely used to treat CMN's is called Tissue Expansion.  Dr. Bauer surgically places "expanders," which are like balloons, under the skin, and Joshua's family slowly fills them with saline on a weekly basis to help the skin "proliferate" (grow).  After 12 weeks of doing this, Joshua returns to Chicago for removal of the expanders, nevus and nevus tissue, and the new skin covers the removed area.
Joshua underwent his first surgery in Chicago when he was 8-months-old, when he had his first tissue expanders inserted.  Unfortunately, Joshua developed a rare bacterial infection, and his first round of expansion was cut very short.  They had arrived home after a 16-day surgical trip, only to return to Chicago 48 hours later for emergency surgery to remove the expanders.  This was disappointing - especially  because it meant that 1) Joshua's treatment would be delayed until wounds from these first two surgeries had healed and 2) Joshua would undergo 6 surgeries to remove his nevus instead of the originally planned 4.  However, Dr. Bauer was able to surprise them with removal of a small amount of nevus in the emergency surgery, so it was a positive twist on a negative turn of events and a glimpse into his medical future.


A few weeks after the emergency surgery with partial nevus removed

Currently, Joshua is 6 weeks past his third surgery, which went off without a hitch.  This round of expansion seems to be going successfully.  His expanders have 370 cc and 270 cc of saline in them (right and left, respectively), and the goal is to reach 700 and 500 before the removal surgery scheduled for August 4.

Right expander wtih 370 cc

Left expander with 270 cc

If all goes as planned, Joshua will have 3 more surgeries (including the one on August 4) to remove his nevus.  This is believed to reduce his risk of developing non-environmental melanoma.  As he gets older, he will likely need one more revision surgery with Dr. Bauer.  His family is extremely grateful for the support they have received from others which have helped them achieve this miracle.  In an effort to offset costs of travel to Chicago, deductibles, and co-pays, the family published a cookbook and is selling it as a fundraiser.

If you would like to learn more about Joshua, follow his progress, or order a cookbook, please visit his blog at http://journeyswithjoshua.com/. To learn more about Congenital Melanocytic Nevi, please visit the Nevus Outreach, Inc. website at http://www.nevus.org/.