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!  

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!

-Renie

Little Philip update and Dr. Korf's Award

At our July 2013 check up with Dr. Korf, we inquired about a new tumor growing on Little Philip's right temple.  At the time, it was pretty small but since then has become more noticeable and somewhat sensitive.  The question we asked in July was whether or not we should attempt to manage any tumor growth that appears on the face.  Dr. Korf was very receptive to our concerns, but also rightly pointed out that future tumor growth is hard to predict.  He understands our desire to remove facial tumors but at some point, we may lose the battle to completely avoid cosmetic concerns.

Fast forward to today when we met with Dr. Peter Ray, a pediatric plastic surgeon here at Children's Hospital of Alabama.  We were very pleased with how intentional Dr. Ray wants to be in his approach to potential removal.  As a quick review, NF tumors grown along nerves, so any removal poses potential nerve damage and when it involves the face, there are lots of important nerves that control facial expression.  Dr. Ray pointed out that the location of Philip's tumor suggests that he needs to take into consideration the function of the eye (blinking, eyebrows, etc.).  He asked to further review Philip's latest MRI before making any decisions about surgery so we will revisit with him in about two months.  That will be after another January 2014 MRI and our follow up appointment with Dr. Korf.

Speaking of Dr. Korf, we were honored to have our story included in a recent video shown at the Children's Tumor Foundation annual Benefit Gala, where Dr. Korf received the 2013 CTF Humanitarian Award.  We could not agree more with the accolades for his thirty plus years of dedication to research to diagnose, find a cure, treat, and care for patients with neurofibromatosis.  We are truly blessed to live where we are to receive his care and for the leadership he provides to the UAB NF Clinic.  

Diary of a Teenage Dog

Hello, my name is Cinder.  I am a six month old labradane (Lab/Dane) and that means I'm a very big girl.  I look full grown but I'm really still an over active puppy.  I was born March 20, 2013 and adopted by the Moss family in July, when I was almost four months old.  You can see how little I was in the picture above with my new mom, Renie.   My human sister, Helen, adores me, and tries to ride me like a pony.

This is me on my first drive to Tennessee to visit my grandparents in Brownsville. I got to meet Dixie, who is technically my aunt, a brown labrador.  

With all my energy, at the end of a long day I love taking up the entire floor space in front of the couch.  I'm just a big pillow pet and my human siblins love to cuddle with me.  Sometime I dont' realize how big my dog paws are when I reach up and try to hug them.  I'm learning to be gentle.

My favorite treat is eating bubbles and soap.  When Helen takes  a bubble bath, I've been know to jump in with her if my mom isn't watching.  It's how I keep my shiny black coat.  One time I ate half a Lever 2000 bar of soap.  My breath smelled great for a few days.

This is my very old feline brother, Atticus.  Atticus was adopted by my mom right after she graduated from college, way before she ever met my dad, Philip.  Atticus had a sweet sixteen party recently.  I really wanted to high five Atticus, but he's not a big fan of me quite yet.  He doesn't hiss at me as much anymore and other than scowling at me when I walk by, I'd say thing are getting much better.

First Day of School

And just like that, my children are all in grade school.  As pithy as it sounds, I truly blinked and my precious infant daughter was standing in front of her new school ready to meet her kindergarten teacher, Mrs. Cooke.

Helen was very nervous about starting school.  She loved her sweet teacher, Miss Sherry, at Trinity CDC and the loving preschool environment the school provided.  This was a big step for her small but growing spirit of courage.  There were some tears, lots of prayers, and encouragement from friends and family.  In the end, there was one person to help calm her, make her feel safe, and help her trust that this was going to be a great new adventure.

This is one of those images I will replay in my mind for years to come.
Philip Jr, second grade.  Helen Boyce, kindergarten - 2013

Philip, Jr.- July 2013 MRI

As scary as the above video seems, we received good news from Little Philip's latest MRI.  This is a 3D orbit that shows just how complex the tumor is and why it is considered inoperable.  However, it is not causing any concerns with blood vessels, nerve function, airway or swallowing.  Comparing the January 2013 MRI to this latest July 2013 showed no significant growth.  When Dr. Korf did the volumetric analysis on the tumor shown above, it was 86 ml in January 2013 and is 89 ml now. That is negligible when significant growth is defined as 20% increase in volume or more. So this is good news.

So where are we?

We will do another MRI in six months. If the tumor shows no growth at that time then we can go back to once a year MRIs. Concerns to watch for with this nodular tumor:
* sudden onset of pain. If this happens, it could mean the tumor has turned malignant. There is a 10% chance over our son's lifetime that this tumor may turn malignant. If the tumor shows rapid sudden growth it could also be a sign of malignancy.  It is a serious concern that warrants our vigilance.
* obstructed airway. The tumor is touching the sides of Philip's windpipe but it is not compressing it at this time. We will watch for any changes in breathing or swallowing.

Otherwise, this latest MRI of his head, neck, spine, chest and abdomen showed no other signs of tumor activity and for that we are greatly relieved. 

We again are incredibly blessed by the outstanding care we continue to receive from Dr. Korf, other physicians within his UAB NF Clinic as well as the clinic genetic counselors and staff.  Thank you for your thoughts and prayers!

Meet Cinder

 We are please to introduce the newest member of the Moss house.  This is Cinder, a 14 week old lab/dane female puppy.  Puppy is a funny term since she is already 40 pounds!  She is a rescue puppy adopted through the Alabama Animal Adoption Agency, lovingly fostered by a lady in Birmingham that made sure she would be comfortable around kids, cats, and everything in between.  Our cats are slowly warming up to her and she is desperate to make them her best friends.  Helen and Little Philip are in heaven having a dog again.