Monday, January 27, 2014

MRI January 2014-Optimistic

Brave Philip just before his MRI

While the radiologist report shows that Philip's tumor has not shown significant growth, volumetric measure shows that it has grown about 20% since January of 2013.  So, we will repeat another MRI in six months and at that point, if the tumor shows growth, Dr. Bruce Korf suggested that we discuss chemotherapy as an option.  The good news is that the two chemotherapy drugs he talked about are very low intensity.  One, Gleevec, is a pill and the other is Interferon,  a once a month IV infusion.  The side effects are flu-like symptoms for the day or so after treatment.  The bad news is that these two drugs among are among very few drugs known to show any affect on NF tumors (about 20% success).  There is no cure for NF, so being in that 20% is the goal.  Surgery is the last resort since it would be such a high risk surgery due to the tumor's involvement of such critical functions (nerves, blood vessels, etc).  The only reason surgery would be deemed necessary is if the tumor became life threatening or malignant.  The tumor is displacing the mucosa (membrane) of his oropharynx (area of the throat just behind the tonsils) but it is not narrowing his airway.  The tumor is also displacing his internal and external carotid arteries and the internal jugular vein, but they do not show any signs of constriction and are therefore, no cause for concern.   As a mother, hearing these observations makes you feel like you are standing on a thinly frozen pond filled with sharks with someone giving you the thumbs up from the shore, all the while hoping the sun won't start to shine.  

So our next steps are to meet with Dr. Alyssa Reddy, pediatric oncologist, Dr. Audie Woolley, our ENT who originally did Philip's surgery resulting in his NF1 diagnosis, and we will also meet with a neurosurgeon, just in case surgery becomes necessary in the future.  Dr. Korf is an incredible doctor who is very detailed and patient communicating with us.  He believes that having these three medical opinions is the most thorough way to review Philip's situation in order to make the best decision for his future care, whatever that may or may not involve.  Also, we are meeting with Dr. Peter Ray a pediatric plastic surgeon to decide whether or not to remove another tumor that is on Philip's left temple.  It is a little sensitive to him due to the location, but it is also growing larger and down the road, may be a cosmetic concern that we don't want to impact his confidence or make him self conscious anymore than he already is.  

As I have said over and over, "Big" Philip and I have deepened in our faith in the last two years , and without our faith, we don't know how we would handle all of this.  But, we do have our faith, and we know our son is a child of God, with angels watching over him every moment.  Added to that faith are hundreds of family and friends that love us through times like this.  We are forever grateful.  We are thankful to be here in Birmingham, with Dr. Korf and his team at UAB NF Clinic who is world renown for being an expert on NF1.

We are now the state leaders for the Alabama Children's Tumor Foundation chapter and encourage you to like our facebook page here.  We will be launching the 2014 Alabama NF Walk in Birmingham to raise important funds for the work of the Children's Tumor Foundation.  More information, including the date and specific location, will be announced very soon.  We look forward to bringing together families and friends from around the state and surrounding states to raise awareness and funds to find a cure and successful treatments for children and adults like Philip.  We know other families are facing NF challenges much worse than ours and as long as we have the ability to raise awareness and support research for NF, we will.  

So long story made short, we will have a few more school absences this spring to cover these important medical appointments  but our prayer request is that the tumor will somehow stop growing on its own.  Thank you so much for your continued thoughts and prayers!  

1 comment:

Kate said...

Oh, Renie. That part about the pond and the sharks gave me the chills. I am praying for you and Helen and both sized Phillips. ;0) I will pass this link on to my Bible Study and my mom. They are very talented prayers. Love and AOT! Kate