To Write Again

I've stared at the blank screen to update our family blog so many times over the past year that it is now overwhelming to think about what topic would be best to lead with as we near the end of 2017.  Several people from different spheres of influence have asked if I am going to write anymore, if this blog is still active, and in some cases, encouraged me to write more.  What has held me back is the fear that my words would somehow seem self-serving, rather than encouraging for someone else.  After some reflection I've come back to this blog, staring at the blank screen, with the courage to try again.  So some potential topics...

• What keeps us motivated to cure neurofibromatosis in our children's lifetime despite the odds?

• Reflections on marriage after 16 years when we are committed to see each other to the grave but not speed each other's arrival to the grave?

• Major career changes?   Because it happened and it's been a good thing.

• What life is like for Helen, largely unaffected by her NF diagnosis, but significantly affected by her brother's time and emotion consuming medical circumstances?

• Life after 40, and I mean like, almost three years after turning 40? (because I'm in denial and therefore, late to the party)

• Reflections on parenthood as we are at the precipice of puberty for our oldest?

• Managing a household with two full-time working out of the house parents, one of whom is this close to completing a doctoral dissertation in higher education,  with two growing school-aged children, while balancing a relentless pursuit of a cure to our children's currently incurable and untreatable genetic condition while also maintaining commitments to giving back to our community through school, church, or the silent support of friends and family who just need someone to lean in sometimes to help shoulder the burdens of life?  (and breathe)

_____________________

People often say to me "how do you do it?" or "I am in awe of your faith" or "y'all are amazing." And when they say these things, I think, "I don't have a choice, right?  Or do I?"  How to unpack that...Is blogging still a thing?  Are my thoughts and words of any value to encourage or motivate others?  Are there other topics that friends, family, or followers of our NF journey would find meaningful to hear?

Let me know...

MEK Trial Restaging Visit results from November 2016

Long Overdue post

We have become so accustomed to social media now that we rarely post on our family blog anymore.  The Moss family has been busy living life to the fullest, with both children doing well in second and fifth grade now.  Philip enjoys varsity level chess and is finishing his cub scout journey as a webelos II this year, preparing to cross over into boy scouting.  Helen is head over heels in love with playing soccer, and enjoys anything high energy, artistic and creative.  We adore our children and how different God made each of them.

Big Philip continues to work on his doctoral dissertation to complete his Ed.D in Higher Education Administration.  We've had quite a lot of challenges over the past two years that have contributed to the slow but steady pace he is taking to complete his degree.  When he needs a diversion from editing, he enjoys wood working and our garage is noticeably more crowded with the tools to prove it.  Renie continues her advocacy, patient engagement, and fundraising work with the Children's Tumor Foundation and we are preparing to host the third annual Alabama NF Walk on October 16, 2016.  There are several newly diagnosed or newly introduced NF families that will be there and we look forward to sharing our message of hope with them for a cure in our lifetime.

Specifically with Little Philip, he continues to be enrolled in the AZD6244 MEK trial through the National Institutes of Health.  His success in this trial has been well documented, along with many other pediatric patients enrolled in the trial.  This drug has been the answer to many prayers for us. At the one year mark since enrolling, Philip's tumor is now 36% smaller.  We rarely hear children ask Philip what is wrong with his neck anymore.  The drug does make Philip fatigued and that can be difficult for an eleven year old boy with peers that are active in sports and the outdoors.  He is learning to cope but is more susceptible to typical childhood germs and has already had a few days out of school due to a fever virus and a stomach bug.  He takes this in stride and continues to amaze us with his resiliency.  We work hard to build trust with him to be honest and open with us about any pain or concerns, physical or emotional, and at age eleven, this is can be a tough thing for a little guy.  Please continue to keep him in your prayers as he has faced more in his eleven years of life than most of his peers.  Again, he amazes us and keeps us motivated to fight for a cure.

Shrinkage!

We have just returned from our first restaging week of evaluation at the National Institutes of Health in Bethesda, MD.  To say that our hearts and minds have been preoccupied would be an understatement.  All of our prayers and focus these past four months were wrapped up into that one 45 minute MRI to see if the first four monthly cycles of the AZD6244 chemo worked.

The historical volumetric analysis of Philip's tumor over time.  

Philip under sedation as he heads into his MRI to review his neck and C-spine

It worked!  We were told by  Philip's NIH medical team that the tumor showed a 10% overall reduction in volume.  We were approved to continue with another four months on the trial and will return at the end of April for the next MRI.

Our week at the NIH was also filled with evaluations to determine safety and ongoing improvements in Philip's life as a result of the chemo drug.  Here are a couple of pictures of our brave son.

Eye exam

Echo cardiogram

Retinal lining evaluation

The incredible and already encouraging Andrea Baldwin, our NP.  Smiles, even after being prescribed antibiotics for a nail infection that is a side effect of the chemo.  I told you she is amazing.

Zilly, the therapy dog, at the Children's Inn at the NIH where we stay during our visits.

Ms. Pam, Philip's neuropsychologist

Photography

Pre-anesthesia screening.  Philip is very good about this (and flexible)

After waking up from his MRI, Philip always orders a double order of fried chicken wings with a side of sass

End of the Year Update

It has been sometime since we updated everyone on our family's activities, especially related to Little Philip's progress since enrolling in the MEK trial through the NIH.  For those of you who follow us on facebook, you know it has been a challenging semester for our son, transitioning to fourth grade while dealing with a pesky strep infection that would not go away.  This infection exacerbated the side effects of taking his new oral chemo causing him to miss a significant amount of school.

Philip's health has improved, although he continues to suffer from significant fatigue and chronic headaches that make it difficult to keep up with his peers at church and school.  He will often nap in the morning while at school, skipping physical education.  We work to communicate with his school what we think may be helpful, but we are trying to tinker with different changes in his daily and nightly routine, hoping to minimize the fatigue and discomfort.

We have no choice to but make this work.  We cannot think of what would happen if we allow his tumor to continue to grow.  We do know from other patients enrolled in this trial that their tumors have shown significant response to the drug.  In one case, there is a boy who started the trial about a month ahead of Philip and his tumor showed 13% reduction this month.  Philip will return mid-January for his first MRI and a significant number of medical evaluations.  We hope and pray that we have  good news to report back.

We are focusing on Christmas and being with family, resting.  With two full-time working parents, managing a complex medication situation while providing much needed love and attention to our daughter has been very challenging but we have managed as best we can.  We are thankful for the many ways our friends and family have provided support to us.  Selfishly, I do not know how this mama would have survived without the many Starbucks gift cards provided to us to make it through the long days at the NIH and often, just needing a pick me up on the way to work after a long night of issues or making up for house work, home work, or general life responsibilities that get backlogged.

We are so incredibly blessed to have Vestavia Pediatrics as our general pediatrician, helping us to manage the November strep infection and ongoing monthly blood draws that are required for Philip's enrollment on the MEK trial.  Those blood draws are no fun, but Nurse Sarah and Nurse Brenda do everything they can to make it light hearted.  We would be remiss without acknowledging the incredible heart of Dr. Simpson, who regularly prays with us in clinic.  It means the world to us to know he shares our faith and hope that bolsters our spirits for our son.  Meanwhile, Dr. Bruce Korf is our "coach" overseeing all aspects of Philip's neurofibromatosis case, always on the cutting edge of the latest research initiatives and willing to spend the time needed for us to learn and educate ourselves about what may be on the horizon to help our son.

Here, at year's end, we believe our 2015 total funds raised for Children's Tumor Foundation exceeds $32,000.  We are also aware of several benevolent gifts made on our behalf to the UAB Neurofibromatosis Clinic where we receive our genetic care through Dr. Bruce Korf.  We cannot thank our supporters enough for providing funding towards research efforts that we know will lead to effective treatments in our children's lifetime.   And finally, several friends and families provided personal funds that we have set aside to assist us with requires flights to and from the NIH in Bethesda, allowing both Big Philip and I the ability to be together with our son for these important trips throughout the time he will be enrolled in this chemotherapy trial.    After taking Little Philip by myself in November, I will never do it again. It was an emotionally difficult trip to be there alone with our son, especially since Little Philip became very ill from the effects of the chemo, combined with an allergic reaction to cephalexin.  I need my husband by my side, and he needs me too.  So thank you, friends and family, for providing us with the ability to make that happen.

We have much to be thankful for here at year's end but we will not publicly share all the ways we rejoice as we pray for the ability to scream from the mountaintops after January's NIH trip when we hope to share good news.  Please pray for the medical team responsible for Philip's care, including everyone at Vestavia Pediatrics, Dr. Bruce Korf at UAB, Dr. Brigette Widemann at the NIH, Trish Whitcomb, NIH clinical care managing nurse, Andrew Baldwin and Marielle Holmblatt, his NIH clinical nurse practioners, Doctor John, the NIH post-doc fellow that helps with Philip's exams, Kara Heisey, NIH patient care coordinator, Mrs. Pam, his NIH neuropsychologist, and the staff at the Children's Inn that always welcomes us with a smile and encouragement when we stay at the NIH.

2015 Alabama NF Walk - Donate or Register Today!

9 days until the 2015 Alabama NF Superhero Walk. Neurofibromatosis has caused a lot of changes in our family in the last year. In November of 2014, we were humbled to receive the 2014 CTF Strength and Honor Award at a beautiful Benefit in Detroit that raised over $3 million for clinical research through the Children's Tumor Foundation. This November we will be taking our son back to the NIH for a follow up exam to his recent enrollment in a chemo drug trial we hope and pray will shrink the inoperable tumor in his neck. 

After receiving that award last year, we were back in our hotel room late that night. Little Philip was holding the award and said "The sphere symbolizes NF and the figures below are treating current patients by holding the sphere and open-handed as they search for a cure." He looked up at us with the biggest smile. I kid you not. 

If you've not donated or registered to walk with us yet, please make the commitment with us to push that NF sphere off the cliff in Philip's lifetime. Register or donate today at www.nfwalk.org/alabama

AZD6244 Clinical Trial - We are In!

We have been so incredibly busy over the last month that we have failed to share our exciting news.  At the end of August, we received the call that Philip had been selected to enroll in the AZD6244 clinical trial for inoperable plexiform tumors.  We were overjoyed to have this answer to our prayers!  

In mid-September we took Philip to Bethesda, MD for an intense week of medical evaluation and testing to qualify to begin taking this promising new oral chemotherapy drug.  He began taking it on September 24th.  He will return to the NIH in Bethesda in January for an MRI to see if the drug is working.  Please pray that it is working this very minute to shrink the tumor away from Philip's airway and vital blood vessels.  

The trip was intense but also a lot of fun! We stayed at the Children's Inn at the NIH which is an incredibly wonderful Inn where children and their families stay at no cost.  There were activities and field trips throughout out time there.  Philip especially enjoyed the game room and he met several other children staying there with their families.  We also attended a Washington Nationals game where Philip went onto the field and into the dugout before the game.  He even got Steve Strasbourg's autograph!  

This is not been the most eloquent or well thought out blog post but in an effort to remain honest and real with our family and friends, I will simply say that we are emotionally and physically exhausted as a family.  This has been an emotionally draining month for us but we are not without hope and encouragement from friends and family that continue to lift us up in prayer and support.  We look forward to gathering together as an Alabama NF community in a little over a week at the Alabama NF Walk where we will see new and familiar faces of NF and remember that our leadership and advocacy efforts are vital not only to our son but countless other children and adults living with NF.