Saturday, September 10, 2016

Long Overdue post

We have become so accustomed to social media now that we rarely post on our family blog anymore.  The Moss family has been busy living life to the fullest, with both children doing well in second and fifth grade now.  Philip enjoys varsity level chess and is finishing his cub scout journey as a webelos II this year, preparing to cross over into boy scouting.  Helen is head over heels in love with playing soccer, and enjoys anything high energy, artistic and creative.  We adore our children and how different God made each of them.

Big Philip continues to work on his doctoral dissertation to complete his Ed.D in Higher Education Administration.  We've had quite a lot of challenges over the past two years that have contributed to the slow but steady pace he is taking to complete his degree.  When he needs a diversion from editing, he enjoys wood working and our garage is noticeably more crowded with the tools to prove it.  Renie continues her advocacy, patient engagement, and fundraising work with the Children's Tumor Foundation and we are preparing to host the third annual Alabama NF Walk on October 16, 2016.  There are several newly diagnosed or newly introduced NF families that will be there and we look forward to sharing our message of hope with them for a cure in our lifetime.

Specifically with Little Philip, he continues to be enrolled in the AZD6244 MEK trial through the National Institutes of Health.  His success in this trial has been well documented, along with many other pediatric patients enrolled in the trial.  This drug has been the answer to many prayers for us. At the one year mark since enrolling, Philip's tumor is now 36% smaller.  We rarely hear children ask Philip what is wrong with his neck anymore.  The drug does make Philip fatigued and that can be difficult for an eleven year old boy with peers that are active in sports and the outdoors.  He is learning to cope but is more susceptible to typical childhood germs and has already had a few days out of school due to a fever virus and a stomach bug.  He takes this in stride and continues to amaze us with his resiliency.  We work hard to build trust with him to be honest and open with us about any pain or concerns, physical or emotional, and at age eleven, this is can be a tough thing for a little guy.  Please continue to keep him in your prayers as he has faced more in his eleven years of life than most of his peers.  Again, he amazes us and keeps us motivated to fight for a cure.

Monday, January 18, 2016


We have just returned from our first restaging week of evaluation at the National Institutes of Health in Bethesda, MD.  To say that our hearts and minds have been preoccupied would be an understatement.  All of our prayers and focus these past four months were wrapped up into that one 45 minute MRI to see if the first four monthly cycles of the AZD6244 chemo worked.
The historical volumetric analysis of Philip's tumor over time.  

Philip under sedation as he heads into his MRI to review his neck and C-spine

It worked!  We were told by  Philip's NIH medical team that the tumor showed a 10% overall reduction in volume.  We were approved to continue with another four months on the trial and will return at the end of April for the next MRI.

Our week at the NIH was also filled with evaluations to determine safety and ongoing improvements in Philip's life as a result of the chemo drug.  Here are a couple of pictures of our brave son.

Eye exam

Echo cardiogram

Retinal lining evaluation

The incredible and already encouraging Andrea Baldwin, our NP.  Smiles, even after being prescribed antibiotics for a nail infection that is a side effect of the chemo.  I told you she is amazing.

Zilly, the therapy dog, at the Children's Inn at the NIH where we stay during our visits.

Ms. Pam, Philip's neuropsychologist


Pre-anesthesia screening.  Philip is very good about this (and flexible)

After waking up from his MRI, Philip always orders a double order of fried chicken wings with a side of sass