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.

Moss Christmas 2012

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First Grade

Little Philip started first grade this week and is thrilled to have Mrs. Morse.    Our family experienced such a dramatic difference compared to last year at this time!  Last year we were in the midst of moving, preparing for surgery, and still had all of our baby teeth.   This year,  we are settled into our new home, feeling blessed with our good health prognosis, and are less two baby teeth.  First grade activities planned for this year include Upwards flag football, and our most recent addition, Scouting.  Little Philip is a proud new member of Pack 1 as a new tiger scout!

Team Moss in Great Steps for NF

We will be walking as a family in support of our son, Philip, to raise funds to find a cure for NF1. Our walk will be almost a year later from his diagnosis and while we are thankful for a positive check up this year, we know other families are facing difficult challenges in treating this genetic disorder. 

If you would like to join us in support of this effort, please visit our Team Moss fundraiser page at alhttp://www.firstgiving.com/fundraiser/teammoss/great-steps-al

Thank you family and friends!

Summer 2012 Update

Insert "sorry we've not been in touch...life has been busy..." obligatory sentence here.  We are finally coming up for air after what can only be described as a horrific 2011 year.  I'll spare you the details, but in a nutshell, 2011 was physically and emotionally draining on all of us.   We have aged, and gained life experiences no one would willingly accept.   We are Christians, so we found ourselves spiritually challenged and tested as well, leading us to ask lots of "why God?" questions that you might expect.  While the darkness of that time certainly became the focus of our thoughts and prayers, Little Philip's diagnosis came just weeks after our move to a new-to-us home, a new community, and our son starting school in that new community.  Since then, I have pondered the timing of everything in 2011, prayerfully asking what God's will is for me as a mother, and for our family.

Anyone that knows me knows that I appear to have it all together.  I am very good at keeping up appearances, and now recognize that I had started to pass that same trait unintentionally along to my family.   If I ever needed help in the past, I considered it a weakness, something I needed to work through, my "cross to carry" so to speak. What much prayer, spiritual guidance, and time has taught me since 2011 is that such self-reliance is not God honoring and not at all what God's plan is for me.  God encourages us to be in a community of faith, to be encouraging to one another in the good times and the bad, to be open and vulnerable with trusted sisters and brothers in Christ,  struggling to come to terms with living in a fallen world.  In 2011, when my life was being completely turned upside down in more ways than can be shared here, God made it absolutely impossible for me to remain an island unto myself.   I looked awful, felt awful, and acted awful and there was no way to hide it this time.  Friends and family forced me to be less self-reliant, to accept help, prayer, and support.    What I came to recognize is that God's grace is freely given to me if I will accept it, and that He works all things together for good.  If I was truly accepting of His grace, I would have recognized these friends and family members as examples of Him supporting me when I finally admitted that I was a mess.  I am working on continuing to accept this grace but as a 37 year old woman who spent a lifetime building up self-reliant behaviors, this is going to take some time.

To be utterly reliant on God for peace and grace in my life means letting go of my controlling thoughts and anxiety for my family.  I am working to develop the kind of relationship and communication with my children that encourages them to be broken with me. I want them to be open about their fears, sadness, and bad decisions or behaviors with me without fear of judgment or shame.   There is nothing they can do to remove my love for them even if I disapprove of their decisions or actions now and in the future.  Their sweet innocent  hearts and minds at age 7 and 4 cannot comprehend the brokenness that they will undoubtedly experience in the world.  I cannot protect them from it all.  I want them to know that they do not have to have it all together all the time.  And so, with the joys that life offers us and the sad times that come as well, I seek to be a real mom, a real person of faith, so that my children will draw their strength from Christ rather than from anything this world has to offer them.

With Philip and I working in higher education, we mark time in academic years rather than calendar years.   We are embarking on the 2012-2013 year, ready to support our little ones as they start 4K and 1st grade.  We also look forward to welcoming our respective new students to our respective campuses where we work.  We begin this new year with a renewed perspective on faith and life that we are confident will bear spiritual fruit for both ourselves and those around us.