Tuesday, February 25, 2014

ENT Consult Review

Today we met with Dr. Audie Woolley, Philip's ENT.  Dr. Woolley did the original surgery on Philip back in 2011 that resulted in his NF diagnosis.  That little 2 cm tumor he removed back then has grown significantly, and is now the subject of many, many medical voices as everyone seeks to provide the best medical recommendation moving forward.

So our consult today was not good news.  Dr. Woolley was professional, kind, and incredibly informative.  We truly appreciated it when he asked the nurses to take Little Philip out to the lobby so he could speak candidly with us as parents.  When he returned, he shared that Philip's situation is very bad.  Basically his neck is full of golfball sized tumors.  Dr. Woolley differed in opinion from Dr. Korf's opinion in that Dr. Korf believes the neck to be one large lobulated nodular tumor.  Dr. Woolley's opinion is that there are several lobular tumors, all involving different nerves.  Neither opinion changes where we stand right now.   The main tumor of concern does involve the vagus nerve, as Dr. Korf had previously indicated.   This is the most concerning of the tumors due to its encroachment on the windpipe and esophagus.  To operate at this point would mean loss of significant function.  The only reason we would operate is if Philip develops issues with breathing, swallowing, or if he develops debilitating pain from his tumor.  There is a mild obstruction in his throat due to the tumor but it is not currently affecting his breathing or swallowing.  If we do have to operate this is what we are facing:

Tumor on the 12th cranial nerve - partial loss of tongue movement
Tumor on the 11th cranial nerve - significant loss of shoulder movement and nerve function
Tumor on the vagus nerve (10th cranial nerve) - loss of voice box function, permanent hoarse voice
Tumor on the 9th cranial nerve - partial loss of sensation at back of throat

Dr. Woolley estimates there are about 6-8 tumors in Philip's neck, all involving major cranial nerve function, and again, the one of greatest concern is the vagus nerve, also the hardest to get to should we need to operate.   People can function without a vagus nerve, but aside from the loss of a voice, many people have significant abdominal issues with reflux or emptying of the abdominal cavity.  It's not pretty but it is doable.  We pray we don't have to find out.

He strongly encouraged us to consider chemotherapy to try to shrink or stabilize these tumors.  He said he would consult with Dr. Alyssa Reddy, pediatric oncologist, after our March 11th consultation with her, and as with other specialist we have met with, all would report back to Dr. Korf who continues to serve as our "quarterback" to call the best shot Little Philip has.

Dr. Woolley shared that he has had about three significant NF patients in his 20 years of ENT practice.  He has consulted with the "big guys" as he calls them down at UAB, including Dr. Bill Carroll and Dr. Eben Rosenthal about Philip's case and they all agree that surgery means significant morbidity, meaning,  sacrifice of significant bodily functions.  We like what we see on all three online vitaes for these three men and are appreciative of Dr. Woolley's professional approach to seeking multiple perspectives prior to meeting with us.  Dr. Woolley is highly regarded in his medical field.  We are in good hands.

While we were viewing the MRI with Dr. Woolley in the clinic's computer kiosk area, we sensed the concern on the faces of nurses and other medical personnel as they watched over our shoulders the computer screen showing the massive bright white tumors that take up so much of the space of our son's neck.  As we exited the clinic, the silence was deafening,  We passed through a sea of smiling faces whose eyes turned quickly to Little Philip, revealing great concern for him.   It was almost too much for us to hold our emotions together and not fall apart in front of our son.

The patience required of us until our March 11th oncology appointment is torture.  But as anyone that has followed our story knows, we believe in a greater God than this broken, messed up world offers. We continue to hold firm to our faith that God has great plans for our son.  Little Philip's sweet spirit and incredible passion for being a good friend to everyone is a sweet balm to our weary parental souls. His smile, his giggles, his silly personality, it makes our hearts burst with love for him.   God intends him to be a light in this dark world.  We believe that with every fiber of our being.

A sweet friend was such an encouragement to me today.  She reminded me of a beautiful verse that has spoken volumes to my heart today as I tried to keep it together and carry on with the day as a mother, wife, employee, and friend.

And I will give you treasures hidden in the darkness - secret riches,  I will do this so you may know that I am the Lord, the God of Israel, the one who calls you by name.  
-Isaiah 45:3

That verse is going up all over our house as we bind it to our hearts and minds in the coming weeks. We pray that it may be an encouragement to you as well, if you are facing darkness and fears in your own life.  

We continue to covet your prayers and good thoughts, specifically for Little Philip but also for us as parents as we seek to be loving, and encouraging to our son.


Deanna said...

Oh bless your hearts, after reading your blog, I love you even more. You have been so wonderful & supportive of my girls & here you are, struggling. I can't begin to imagine what you all are going through. Please know you're in my thoughts and prayers and all 3 Hallman girls are here for you, we love you.

Sharon Henderson said...

Stay encouraged Reni. Praying for you guys and for Phillip.

June said...

You are in our prayers, Renie.

K.M. Camiolo said...

praying for you and your family as you move forward.
You are not alone.

Kristi Hopkins said...

Saying prayers for you. Your words are strong here. Keep the faith. HUGS.

The Carps said...

So sorry to hear the news. May you find some peace as you move forward through the appointments and decisions. The Lord is with you and your family. Love and many continued prayers.

Hannah @ Abney Ink said...

We are praying for you!!!

K Lott said...

You are in our prayers. I'm so sorry. I found your blog a few months ago and knew you looked familiar. I realized I went to high school with your sister, Elizabeth, and graduated from Samford, small world! God is in complete control and you are a strong family. Prayers for patience and understanding.

Anonymous said...

Praying for you and your family, Renie. I can't imagine how difficult this must be.