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

1 comment:

April said...

Hi there. I came across your name and your little boy's story regarding the trail he has been going through. My daughter has NF1 and has a large mass in the same area your son does on his neck. My daughter has three different ones in that area as well as in the chest and close to the spinal cord. I have been searching for more info on anything else I can do to address this on a much deeper level than just monitoring her with yearly MRI's etc. I want to learn more about research and trails going on. Can you help guild me in the right direction? I would so much appreciated it! How do I find more info on the trial drug he is doing? If you are in Facebook we can connect that way if it's easier... my name is April Schweikl