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!  

Thursday, January 02, 2014

2014 New Year's Resolution - $15,000

I am confident that 2011 and 2012 will always be the most painful and difficult years of my life.  I pray nothing worse comes my way in future years than what I faced during those two years.  But, I am also confident that  I will look back on 2013 as the year I began to rebuild my faith, my hope, my trust in God's plan for my life and the life of my precious family members.  Saying it is one thing, living it is another.  As each year passes and 2011 and 2012 become more distant memories, I will continue to discipline my heart and mind to daily put my faith into practice not for my own's sake but so that my faith will bear fruit in my relationships with everyone I encounter.

What is on my heart now is that it is January 2014.  That means it is time for Little Philip's upcoming MRI to see if his tumor has grown since July 2013.  The tumor was stable from January 2013 to July 2013.  So if there is no new growth this month, that would mean we have gone an entire year without growth.  That is my fervent prayer and I ask my family and friends to pray with me that the results will show no new growth.

As a means of stepping out in faith, the Moss family is committed to raising $15,000 for Children's Tumor Foundation in 2014.  Helen will turn six in March and Little Philip will turn nine in July.  9 + 6 = 15.  $15,000 for the fifteen years our children have been blessings to us this side of heaven.  We are working on plans to host an NF Walk in Birmingham and will announce details as soon.  We encourage all our friends and family to participate with us here in Birmingham.  If you can't make it, please contact us and we will help you participate in a nearby NF Walk or Run in your own neighborhood.

As always, we cannot thank you enough for your continued thoughts and prayers for our family.  We thank you for allowing us into your own lives to pray for you as well and we look forward to celebrating joy that comes in 2014!