February 16, 2014

Evan continues to be hospitalized for the port infection and will be in at least until 2/23/2014.  He is in great spirits and is doing really well.  He is crafting and has an appetite and tons of energy.  Another round of Chemo is scheduled for Thursday and as long as his port does not have to come out that will begin on schedule.  His testing titers for infection have been negative so that is a sign that the Vancomyacin is working and the port is being cleared of infection

Meghan was in contact with the Ortho team in Tampa Moffitt since we were unable to travel there due to Evan's infection.  The news from the team is not as favorable as it could be.  I haven't talked to them as of yet but from what I could tell from Meghan the following is what is available to us:

• The prosthetic device is available to us but due to the fact there will be little natural bone left over to attach the device to, the team is afraid that there will be many complications to this avenue including detachment and breakage.  This was truly disappointing news.  The team will perform this procedure under protest.
• The Fibula approach is also problematic in that there would be a large portion of the bone removed and this would cause serious problems with leg development over time.  I believe from all of the list servers I have been reading up on, this is problematic for other people as well regardless of age.  Issues include: nerve pain; loss of sensation; brittle bone area; loss of balance; infection of both surgery sites and the list goes on and on.  The team has elected not to perform this procedure.
•  The team is recommending that a cadaver bone be placed in the area of tumor removal.  A bone suitable for Evan and his age is difficult to come by due to the low morbidity of children his age along with low organ donation.  I believe, and this is where it gets a little foggy for me and I will have to question the surgical team,  this is to buy Evan years of time so that his joint areas grow sufficiently to allow the prosthetic device.  I believe also that it is entirely possible that the cadaver bone would grow and future replacement may be unnecessary.  A request for a cadaver bone has been forwarded to University of Miami and we are currently on a wait list.  This is being done regardless of what final decision we make.

 Our course of action as of now is to get Evan healthy and the infection in his cured.  We will have the next two rounds of Chemo to finish out the second full round of Chemo and then we will travel to Tampa to have a conference.  It is possible that we will travel to CHOP in Philadelphia for a second opinion.  Anything is possible so stay tuned for updates.

The family is aware that nothing is going to be easy along the road to "No Evidence of Disease" (NED) and that there will be bumps or pot holes along the way.  I will say that the road is made easier by all the support from relatives and close friends as well as people we barely know so keep the prayers and positive thoughts coming his way!