Thursday, February 13, 2014

Neurosurgery Consult Review

Philip enjoying the morning snow on February 13, 2014
Today we met with Dr. James Johnston, neurosurgeon at Children's Hospital of Alabama.  This is one of the three appointments Dr. Korf wants us to have in order to better understand the direction we will take if Philip's neck tumor continues to grow the way it has so far.

Given Philip's tumor's growth, about 20% this past year, is outpacing his typical growth each year. Eventually, serious concern may appear.  Those specific concerns cannot be fully predicted at this time.

  • We know that as of today, both carotid arteries and jugular are displaced by the tumor and other important blood vessels are heavily involved by the tumor. 
  • The tumor is growing around the windpipe but as slow growing as the tumor has been, it has not constricted his breathing or ability to swallow, even with the small area behind his left tonsil that shows slight pressure on larynx. 
  • Then there are the nerves involved.  Facial nerves are certainly a concern, as is the vagus nerve that runs from the abdomen through the neck and into the brain.  The thought is that this tumor is growing on the vagus nerve, a very important nerve not to damage. 
  • Vocal chords are not affected at this time, but could be.  
  • There is some very minor deformity to some bone structure as well.  
In other words, there is a lot going on in that section of the neck so for this to be the place for a tumor, makes it difficult to predict.    When you see the size and shape of the tumor, it is hard to believe that Philip has no pain and no symptoms at this time.

It sounds like we are at the end of the watch and wait approach.  After our next MRI in June 2014, we will likely be looking at some kind of chemo option and if that fails, ultimately knowing what kind of surgical approach is going to be best should we have to make that difficult decision.

Dr. Johnston says the entire team listed below, along with him, will form a full review board of Philip's case  to make the best medical recommendations to us.

Dr. Audie Woolley, ENT Monday 2/25
Dr. Alyssa Reddy, Oncology, 3/11
MRI (pray for no growth) - 6/20
Dr. Bruce Korf - end of June to evaluate where we stand

As parents, this is emotionally exhausting. We are scared, but God knows that and is bigger than our fears.  We pray for peace and an increase in wisdom as we take these next steps as parents of a child with significant NF health concerns.  And most of all, we pray that we can make Philip's life as joyful and care-free as possible.  At age eight, he is wrestling with questions most children his age would never think to ask.  We have always said we do not want NF to define him, but with so many doctors appointments, it is hard for him to not ask questions and worry.  Our hearts feel like they want to burst from how much we love him, and want to see what God has in store for him.   He's a pretty special kid who just lights up the room with his special sense of humor and sweet spirit.  Thank you for your continued thoughts and prayers!

Team Moss has set a $5000 goal supporting efforts to find a cure for NF.  Join us May 10th at Railroad Park in Birmingham for the first annual NF Walk, providing support for the outstanding work of the Children's Tumor Foundation.
Team Moss's Team Page for NF Walk 2014 Birmingham, AL


Connie Sorman said...

Such difficult decisions that no one should have to make concerning their child. I will pray for your guidance and for your beautiful boy to continue pain free. Best to you at the NF Walk. #endnf

The Carps said...

Continued prayers for guidance, peace of mind while waiting, and so much more! So glad to hear that he is pain free, celebrate the "wins" where you can. Hugs and Love from the Carpenter Family.

stacy said...

Continued prayers for you all...

Unknown said...

My heart hurts for all of you. I continue to ask God for a miracle. With much love,