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.

Envelopes

It is June, and that means that Big Philip is living in Starkville for most of the month to help coordinate new student orientation at MSU.  After several years, our family has learned to adjust, especially as the children have grown older and able to keep busy with either each other or with friends and summer activities.

Still, June is a month of anxiety and stress for us as husband and wife.  We've had a lot to deal with in our marriage over the last few years and at one point, we reached a place where we could not go on...together.  In the midst of that time we experience the devastating diagnosis of NF with our son that would lead to the diagnosis of our daughter and Big Philip this year.  As we reeled from the diagnosis it caused us to pause, make our son the priority in our hearts and minds, and as a result, knee jerk decisions were delayed and ultimately never made.

God has worked miracles in each of our hearts in the last two years and that has led to the miracle of our marriage not just still standing, but being stronger, deeper in the wisdom that God has led us to, and the recognition of the gift of joy we gain from each other through God's work in our lives.

Big Philip left last Thursday for his weekend of class and grandparents picked up the children to take them to the annual family reunion at the beach.  When Big Philip returned from class Saturday we had a little over 24 hours with just each other.  We had a romantic date night and worshipped together as husband and wife on Sunday morning.  And then, it was time for Philip to head to Starkville.

Doubt began to creep into in my heart as I fought back the tears, fears, and worries of the past.  And in that moment, Philip placed three envelopes in my hand:

Open when you have a long day

Open when you really miss me

Open when you need a smile

He knew and my heart swelled with joy once again.  

Fairy Houses

When Helen turned three, we gave the highest form of praise in the form of copying another friend's fairy themed birthday party that had been a smashing success.  We too, had a fairy party where the party guests made little fairy houses.  The houses were beautiful, each lovingly made by the tiny hands of the children and we sent them home as a favor, with the instructions to place the houses where a fairy might take up residence.

When we moved in 2011, I accidentally forgot to move our fairy houses that had been placed beneath our children's bedroom windows in the yard.  I invented a quick tale about how we could not move them because "Puck" and "Pixie" would be homeless, promising that the new house owner would take good care of them (leaving out the part about the new owner being a recent college grad and bachelor).

Helen is quite the imaginative child and we want to celebrate our children's developing personalities by embracing activities that encourage imagination and curiosity about God's beautiful creation around them.  So recently, we made a new fairy house with her.

We started with a peat pot.  You can purchase about 6-8 of these for under $5.00 at any home improvement store.  Simply cut a small door in it and glue it to any discarded piece of wood, heavy cardboard or a leftover floor tile.

If you don't have any natural moss available to you, you can purchase an inexpensive bag at any craft store.  Spanish moss is also a fun thing to attach to your fairy house.  We used simple white glue to cover the walls and roof of our peat pot with moss and then glued natural ornaments gathered from the yard (especially those prickly foot-damaged gumballs).  And this is the end result.  You hear Helen in the background, squealing and giggling with excitement.

From there, we found a home for our fairy house underneath a bush in our front yard.  About a day later, Helen found a green note just inside the front door of her fairy house from Flutter.  Flutter shared that she is the younger cousin of Puck and Pixie that lived at our old house.  And then, she shared rules for Helen.

Helen has cleaned her room completely, even helping her older brother clean his room.  She is enthralled with the idea that a fairy is living in her front yard and that Flutter looks in on her through her bedroom window from time to time.   On the morning after the room cleaning, Helen woke up and ran straight to the fairy house to see if Flutter had noticed.  A small bag of Pop Rocks was there waiting for her.  We have great plans for our little fairy friend and think this will be a good way to embrace Helen's imaginative but strong willed spirit rather than fight it as we help her develop personal responsibility, a loving spirit, and a kind heart.

Early Birthday Party for Little Philip

My poor children have the misfortune of having their birthdays in the summer time and on spring break.  That would seem to be super awesome to some kids but for them, that means that birthday parties will always be sparsely attended due to their friends being on summer and spring break vacations.  As Little Philip prepares to turn eight in July (I can't even type it), we thought it would be a good idea to combine an early birthday party with an end of the year first grade class party celebration.

It was great having the parents and siblings of so many of his classmates join us for a cookout in our back yard, despite the early evening rain shower that surprised even the weatherman.  It was another opportunity for us to realize what a great community we've moved to and we look forward to our children growing up with these families in the years to come.  

We invited all the boys in his class to camp out Saturday night but due to the wet grass from the rain, the party moved inside.  After s'mores over the fire pit we settled down for a sleepover in the den.  I have never been more exhausted and happier as a mother to have pulled it all off.  The boys were all asleep by 10:30 pm and up at 6:15 am back jumping on the trampoline (sorry neighbors).  

This is what childhood is all about.  What joy!

Control

It is the feeling of being completely out of control.  Admittedly, I am a control freak of the worst kind.  When that control is at its peak, I am a very difficult person to be around.  I don't like me.  Literally, I'm crazed.  I'm aware of my behavior but unable to change it.   I turn inward rather than seek support from family and friends that repeatedly offer themselves as a place of trust where I can be vulnerable.  I don't want to be a burden.

Sometime in late January, in between the painful results of Little Philip's latest MRI and the even more painful wait for the PET scan that ruled out cancer, a dear college friend called me to offer encouragement and prayer.  In her soft and loving voice, so very different than my own, she grieved with me over the realization that Philip was not mine.

Philip is not my child.  

Philip is a child of God, entrusted to me to love him unconditionally, to help him navigate life through this broken world.   Did I truly believe this?  Admitting this meant the ultimate surrender of control to a mother's heart.

I was still seeking control over my child's life, his future, all that his NF1 diagnosis may mean for his future.  I would verbally spout the correct things a confident Christian should say.  I pictured myself giving a testimony to be encouraging to other mothers facing a life threatening diagnosis in their children.   Literally I stood in front of a mirror like I was some sort of brunette Beth Moore.  Practicing this speech helped me to keep from losing it or crying when asked how things were going by friends.  Practicing helped me to become less emotional, more practical.   How's that for control.   I'm good at that, deflecting anything and anyone that seeks to expose my true weakness.

I felt such guilt and shame for my past and how I was so quick to judge a fall from faith in others that faced life's trials.  Marriages in shambles.  Infidelity.  Addiction.  Terrifying medical diagnoses.  Loss of jobs.  Loss of income.  

If they were truly Christians, if they truly practiced their faith then they would weather this storm better...if I were them then I would....

I am not able to weather this storm alone anymore.  I have never been in control of my own life let alone the lives of my children.  And despite my best efforts, I have failed in controlling the life of my husband.  This realization is a good thing.

I have weathered some serious personal storms in the last few years and they crushed my spirit and hope.  I spent a long time in the dark, truly believing that God was punishing me, that this was some kind of atonement.  Never having thought much of the how the Holy Spirit worked in my life, I felt the presence of the Spirit, a gift from my heavenly Father, hope and encouragement, courage and wisdom to make it through another day.  So often I would shut the door from my children and husband, fall on my knees in desperation, weeping uncontrollably, completely broken.  I found myself praying the prayers found in Lamentations (how long Lord, must we wait?  Do not forsake me, Lord).  

And in time, I began to trust in God's timing again, letting go of the false belief that I ever had control over any of this.  And when I did, hope returned.  Glimmers of joy returned.  And light is now returning in my heart and spirit.  I thank God that He chose me to shepherd the hearts of my precious children.  I am given the privilege of sharing the gift of hope and encouragement with them.   I am given the precious gift of celebrating how God is working in each of our lives.  When Little Philip cries out in fear and anger about having to have MRIs for the rest of his life, I am there to grieve with him but offer encouragement and hope, to pray with him.  His sweet spirit is so strong.  Helen is so young and oblivious to her NF1 diagnosis.  There are no signs or symptoms other than the knowledge that she has it.  I pray she does not face the same fear and struggles of her brother.   My husband,  struggled with feelings of guilt that he passed this disorder to his children.  And if the tables were turned, I am sure I would struggle to keep such thoughts out of my mind as well.  After all, it is out of his control.

There is no self help book that can adequately describe this journey, but the journey continues and the joy in my heart is increasing.  I cannot imagine facing these trials without my faith.  I shudder to think that I believed I had fallen from grace, that God had turned His back on me.  And yet, in the brokenness, He carried me to a place where my heart and eyes were opened again to His unfailing love.  These are good lessons.  These are good gifts.  I am wiser for them and they sustain me through the continued uncertainty of life.

Be joyful in hope, patient in affliction, faithful in prayer

Romans 12:12

NF Forum 2013

This past weekend we attended our first NF Forum, a weekend long patient and family support meeting  where we learned from the best medical experts about living with neurofibromatosis and the latest medical advances and research initiatives.  Just before leaving for the Forum, we received the results of our parental genetic testing letting us know that Big Philip also has NF.  The good news is that at age 38, he has no known symptoms and has not had any serious health concerns in his life.  He will have a clinical appointment with Dr. Korf in the coming weeks, just like Helen, just like Little Philip.

Over the past year, we connected online with other families around the country and in some cases, the world, through the NF Moms Rock and NF Dads Rock facebook groups.  Meeting them in person, hugging them, watching our kids play together, the experience was so very rewarding.  We grieved together for the challenges people with NF can face due to tumors, bone deformities, learning disabilities, blindness, deafness, severe cosmetic concerns, just to name a few.  I grieved for one mother I met who loss her husband several years ago to an NF brain tumor that had turned malignant.  She was there with her beautiful son, a spitting image of his father, who also has NF.  Despite the sadness, the weekend was also about celebrating recent medical advances and the dedicated physicians and the research community that make that happen through their recent clinical drug trials and other research initiatives.  Physicians from the Mayo Clinic, Boston Children's Hospital, Vanderbilt (go 'Dores) to name a few.  These physicians presented their research to us, offering us hope, sharing their passion for finding a cure for NF.

On Sunday our Nashville family, the Gaffrons and Extons joined us in the NF Walk, where we raised over $1400 for the Children's Tumor Foundation's research and advocacy efforts.  It was a beautiful day and coming together with our friends and family and it was a beautiful way to bring hope to our own lives and the lives of other NF families.

And now we will begin ramping up our efforts to establish and Alabama NF Support Chapter through the Children's Tumor Foundation.  We have connected with so many families here in Alabama that we feel compelled to do this, to offer hope, encouragement, support for the newly diagnosed and for families facing the challenges of managing NF in their own lives or the lives of their family members.  We have a facebook page, Neurofibromatosis Alabama and have established an email for families and patients in Alabama to contact us at nfalabamactf@gmail.com.  We will work with UAB Genetics on the NF Clinic Days to raise awareness and support and to continue to educate ourselves and other families about NF.  One day, there will be a cure and we pray that our efforts in some way, play a small part in helping this happen.

Kindergarten Is Around the Corner

 Our wonderful elementary school PTO tied beach balls and welcome to school cards to all the incoming new kindergarteners mailboxes this week.  Helen is the second youngest child on our street so all of our neighborhood friends came out to congratulate her when we arrived home Monday evening.  Helen was very excited and can't wait.  Her parents, on the other hand, are stocking up on tissues at Costco.  Where does time go?

Helen's Eye and Genetics Appointment

We expected Helen to be a blubbering mess at her eye appointment after Little Philip's meltdown over the dilation drops at his appointment a year ago.  But our defiant and spirited little girl, always looking for a way to one up big brother, showed incredible cooperation and curiosity.  As cute as it was to watch her go through her first eye exam, the most important outcome was that there was no sign of optic glioma tumors that are sometimes associated with NF1.

We place a check in the good news column and it begins to sink in that we have not one but both of our children now facing a life time of concern over potential complications that come from an NF1 diagnosis.  As always, this is where we ask God to give us peace and strength to weather the storms.

48 hours later...

We met with Dr. Korf  and our Ravin Williams, genetic counselor, at our UAB Genetics Clinic.  This is the follow up exam to Helen's positive test for NF1.  We could share so much about what we learned  but again, the good news column gets another check mark since we know of no medical concerns at this time.  She will return in a year for an annual exam.  Here is the interesting information...

If not for Little Philip's tumor, no one would have suspected he has NF1.  The genetic markers for NF1 are 6-8 cafe au lait spots on the skin (CALS), and/or freckling in the armpits or groin.  Most often these CALs are present from birth or shortly thereafter.  Little Philip has 2-3 CALs which is pretty standard for caucasians with no freckling.

Helen has 2 faint CALs.  That's it.

Both of our children's genetic test show that they have the exact same genetic mutation resulting in NF1.  But neither exhibit the usual marks.  Why?  As Dr. Korf stated, we are an atypical situation.

Question we asked today:

If Philip's NF1 is so atypical but he has a largely inoperable tumor, is that indicative of a potential tumor concern in Helen as well?  Why not provide a baseline head/neck MRI?
Not necessarily, but there is no scientific link between the type of genetic mutation that results in NF1 and the way in which the condition manifests itself in a patient.  There is no effective treatment to shrink or remove neurofibroma tumors.   You can only attempt to treat symptoms.  So there is no point in doing an MRI unless symptoms are present (headaches, back paint, etc.)

Because of this, and pretty much for the betterment of scientific research, we elected to have the genetic blood test today ourselves.  Dr. Korf reminded us that each of us is 38 years of age and have no known NF1 medical concerns.  We could speculate that Helen's NF1 would progress in a similar path through life.  We pray this is the case.  Maybe one day our family genetic testing will add information to track what NF1 mutations can better predict associated complications.   Right now that is not possible. Maybe the additional of our two tubes of blood will lead to effective courses of treatment to kick this genetic condition to the history books for good.

We know that it is statistically impossible that one of us did not pass NF1 on to our children.  It does not matter who did it, and we have talked about this extensively.  If this test provides another genetic link to finding out more about NF1 and how to find a cure or a course of treatment, then count us in.

There will be no guilty feelings or thoughts when we find out.  God provided us with the beautiful ability to pass on to our children Daddy's gorgeous brown eyes and Mommy's stubborn will power.  What brings this mother's heart the greatest joy is seeing that God has also passed on to us two tender hearts that show early signs of chasing after the will of our heavenly Father.

There is a reason this is happening in our family.  God intends it for His glory and we pray that we are salt and light to those in fear and darkness facing a new diagnosis of NF in their family.  We cannot make it go away but we will come and walk alongside other local families to support and encouragement them.

Next week Little Philip will see Dr. Woolley, his ENT, to make sure that his tumor is not causing any concerns in his facial nerves, vocal chords, and other surrounding tissues in his neck.

Team Moss's Team Page for NF Walk 2013 Nashville, TN

Team Moss's Team Page for NF Walk 2013 Nashville, TN


Our son, Philip, was diagnosed with Neurofibromatosis Type 1 (NF1) in the Fall of 2011 after surgical removal of what we thought was a swollen lymph node on his neck.  The pathology showed that he had a large benign plexiform tumor in his neck linked to his diagnosis of NF1.  The tumor continues to grow and we are under the excellent care of the UAB Genetics Clinic that is part of the Children's Tumor Foundation NF Network of clinics. The care we receive there, as well as the new clinical drug trials and ongoing research provided by the Children's Tumor Foundation is critical to our son's life.

Our daughter, Helen, was confirmed to also have NF1 in January 2013, but she shows no known symptoms at this time.

We are working to educate ourselves, our family, and friends about NF1 and to ensure that our son and daughter have the medical care they for a long and productive life.  We are blessed to be in Birmingham, AL where the top genetic physicians and researchers are on staff at UAB Genetics Clinic and we maintain close relationships with specialists at our award winning Children's Hospital.

Our current prognosis is very concerning with Philip and positive for Helen.   But we have learned much about NF1 this past year, and we know that this genetic disorder is a difficult, worrisome, and complex one for patients and their families.  It is for this reason that we walk in support of finding a cure and improved treatment.

Thank you for joining in support of our efforts here at Team Moss!  If you live in the Nashville area we would love to have you join Team Moss in the NF Walk on Sunday, April 21st!

Happy 5th Birthday, Helen!

Happy fifth birthday to our precious little girl, Helen.  We celebrate a little early this year to make sure we could have as much family as possible to celebrate her special day.  Mamie Moss and our Carpenter cousins came down from Tennessee and celebrated with Helen and her 4K classmates.  We painted pottery and had a delicious princess cake.

Unfortunately mommy will be at a conference on Helen's real March 18th birthday.  Something tells me her sweet daddy will make sure that day is very special too.  Mommy's conference is in Orlando so a travel souvenir from there is certain to bring a smile to her face.

Scouting

This past year, Little Philip began his scouting journey, and this past week moved up to Tiger Scout within his cub scout ranks.  Our son does not like sports, but will begrudgingly participate when we try it from time to time.  His spirit is typically one of obedience so sometimes it is hard for us to figure out what his passions are.  He is passionate about what scouting has added to his life.  As a mother, I am keenly aware of how important it is to take seriously my role as mother to my sweet little boy.  And in order to do that, I have to realize that looking into those beautiful brown eyes is a boy, no longer my baby.  And sooner than I will ever be ready for, that boy is going to be a man.

Oh, how I pray for him to be a man after God's own heart!  I watched him participate in scouts this year and saw the older boys mentor and lead these young boys at various activities and events.  This past week at the Blue and Gold banquet where the boys moved up in  their ranks I watched cub scouts walk the bridge and accept the hand of the young men within their chosen boy scout troops. It reminded me how important it is to surround my son with male friends that will be role models to him as he navigates this broken world.

Train up a child in the way he should go, and when he is old he will not depart from it.
Proverbs 22:6

Helen's Genetic NF1 Test Result

As shared in the previous post, we elected to have Helen have the genetic test for Neurofibromatosis Type 1 (NF1) at our January 31st appointment with Dr. Korf.  We received the results of that test today confirming that Helen also has NF1.  This means that both Helen and Philip, Jr. have a 50% chance of passing NF1 on to their children, something we have not yet even begun to wrestle with as parents ourselves.

Our next step is to repeat the same diagnostic appointments Little Philip had when he was diagnosed in 2011.  Helen will have a complete eye exam to rule out optic glioma tumors.  None were found in Little Philip which means it is highly unlikely that he would develop them in his lifetime since these types of tumors are almost always present from birth and manifest themselves in very early childhood.  Prayer number one:  that the same outcome will be found for our Helen.

Helen will be examined at the UAB Genetic NF Clinic for a baseline evaluation.  We plan to aggressively push for a baseline head/neck MRI to rule out tumors.  Prayer number two: that the doctors will agree with this decision and that the results will show no tumors.

Prayer number three is that Philip and I will be able to calm our anxiety and fears for both of our children, and remain steadfast in love and faith that God has His hands on our precious children and on our family.

Update on Philip, Jr. - a long one

Philip, Jr. had his second annual head and neck MRI in January to evaluate the status of his existing NF1 tumors in his neck.  Some may recall his fall 2011 diagnosis with Neurofibromatosis Type 1.  It's been a roller coaster for us as parents as we have sought answers and worked to educate ourselves on what NF1. Following the MRI we had a PET scan as well to rule out malignancy of these tumors.  Philip is cancer free and we are very, very relieved not to be facing that challenge.  But he is facing serious challenges.

Philip has two bilateral plexiform tumors in his neck. Both were present at last year's MRI. The good news about these two tumors in his neck is that none of the blood vessels are being compressed.
*tumors show typical target lesions for what a typical plexiform tumor displays (laymen's terms means there is not an obvious indication of malignancy)
*Philip has no pain or discomfort

The bad news:
*The tumors have grown. The left tumor is not as big of a concern having grown about 1/4" in a year. The right tumor has grown 1 inch vertically and 1/4" horizontally.  What you see from the outside of the neck is about 10% of what is actually going on inside his neck.
*His carotid artery is displaced due to the size of the tumor but again, it is not constricted or inhibited by the tumors at this time
*while not currently threatening the windpipe/esophagus, the tumors have grown closer to it, and they could continue to grow where this will have to be addressed

Our wonderful doctor, Dr. Lane Rutledge at UAB Genetics recommended that we meet with her partner and colleague at UAB, Dr. Bruce Korf.   Dr. Korf is deeply involved in clinical trials and research of NF1.  He reviewed Philip's latest MRIs and met with us for almost two hours to explain potential management options.  He is sending MRI records to the National Cancer Institute for volumetric analysis.  If you remember geometry and learning to calculate volume vs. area, you have a better idea of why measuring volume of tumor is better than measuring vertically and horizontally when a tumor is shaped the way Philip's is (see above).

What happens now?
*Philip will repeat an MRI in July 2013 that will include his chest and abdomen.  Dr. Korf believes the tumor in question to be connected to a particular nerve that runs from the brain to the abdomen.   Because of this, he wants to rule out tumor growth that may be below the neck where the last MRI images stop.

Depending on growth, to be determined in July, we are a potential candidate for new drug trials that attempt to shrink or halt growth in plexiform tumors.

Surgery is to be avoided at all cost due to the high risk involving major vessels, nerve function, and the windpipe/esophagus.

* We will meet with Dr. Woolley, our ENT in April 2013 to make sure that this tumor is not affecting vocal chords, breathing, swallowing, etc. 

We had Helen genetically tested for NF1 as well on January 31st.  NF1 is passed on genetically 50% of the time.  The other 50% is a genetic mutation.  We will know the results by the end of February.

We continue to seek God's will for our son. We have learned more than ever before the power of the Holy Spirit as we have prayed for wisdom, knowledge, and strengthened faith through this trial.   Philip is otherwise a perfectly healthy and incredibly happy little boy.  He has the sweetest spirit, beautiful youthful faith in God, and makes us laugh all the time.   Helen is a precious and precocious little girl, who tries very hard to be a sweet and loving little sister but this has been a hard few months for her with so much attention paid to her big brother.    Her birthday is coming up and we want that to be a special time to celebrate the special place she has in all of our hearts as well.  

We are not good about blogging anymore but thought this would be a good way to communicate with friends and family from time to time as we continue to seek medical options for Little Philip.