4/06/2014

Evan had his first Post-Op appointment with the surgeon at the Moffitt Cancer center in Tampa Florida on Thursday April 03, 2014.  We reviewed the X-rays that were taken at Health Park medical center on Tuesday.  The surgeon was very pleased with the progress that Evan has made especially the fact that he is using his fingers and wrist without any issue.  Evan can flex his elbow and the surgeon wants him to do so on a limited basis.  He does not want him to raise his arm using the shoulder as this is the most vulnerable area and will take some time to heal to the point that Evan can raise and rotate his arm.  The surgeon wants Evan to wear his sling during all waking hours to protect the arm until the lower section of allograft begins to bone over as Evan's growth plate begins that process.  Unfortunately the healing process will be impeded somewhat by the continued Chemo that must take place shortly.

The X-rays are below  and if you look closely, you can see where the allograft is seated down inside Evan's natural bone near the elbow.  There is a plate that extends upward from the elbow and is secured with a few screws.  There is also a second plate that extends downward from the ball  and is on the opposite side to give more stability to the prosthesis.  This plate is secured with some nasty looking screws and the whole assembly looks like the old erector sets I used to play with as a child.


We were expecting to have a conversation about the pathology report that was due.  This report would outline the amount of necrosis (death) of the tumor and would be a guide for the Oncologist in Fort Myers to plot out Evan's remaining Chemo.  From my posts prior the goal was to have a necrosis rate of 90% or better as this would mean less intense (same as before) Chemo.  Unfortunately the report was not ready and we had to leave Tampa not knowing the results.  The surgeon had stated that he liked to discuss the results in person and felt the report would be finalized the very next day.  He promised that he would call rather than make us complete another four hour round trip.

Meghan did receive a call on Friday afternoon and the news was disappointing.  The necrosis rate of the tumor was only 60%, not the 90% or better we had hoped for.  At first this raises your heart rate a bit and gives you concern because you realize that the probability of live tumor cells circulating through Evan's blood was a real and dangerous threat to his health.  Then you begin to settle down and retrench the thoughts and actions.  I came to the realization that even if the tumor had 100% necrosis, there would still be live cancer cells circulating through his system and that Chemo needed to be done anyway; also I realized that 60% of this tumor was destroyed and it is out of his body and can no longer send out deadly cells.  So in reality we have a positive outcome and we have agressive parents and Doctors that will do anything to cleanse his system of Cancer cells so there isn't a relapse or a metastasis of the Osteo.  We still have a very, very good fighting chance.  Meghan is going to contact the Oncologist on Monday and see if we can begin Chemo immediately; perhaps as early as Thursday.  The sooner we start the process the better and we realize that the Oncologist may want to add different and more powerful drugs to the party and that is what we will do.

I have received advice and comments from many wonderful people that have either gone through this or have a relative that has gone through the treatment necessary.  They have given me great comfort in relating that the percentage of necrosis is just that a percentage and there is no peg of glory to place that hat on.  One person told me that their relative had 100% necrosis and still had a relapse with Mets to the lungs but is now NED and has been for years.  I had another that told me their relative had a 10% necrosis and is now NED for years with no further Mets.  So the journey is never written in stone and each and everyone has a slightly different story and path to survival.  I cannot thank these people enough for opening their hearts and baring the wounds and scars so I can have comfort knowing there will be potholes in the road to NED for Evan.  That is why I am writing the blog so others can follow and if they have a journey like Evan's and they have just started they can see what has happened so far.  I do believe that a positive attitude by patient and family helps to keep the journey on the correct path and I know the resolve of this family is never wavering.

I will post again when we begin the Chemo process.