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.