2014 Strength and Honor Award from Children's Tumor Foundation

We wish we could refuse to accept the 2014 CTF Strength and Honor Award. The journey that led to this moment is not one we would willingly walk. As newlyweds, our expectations did not include having to accept a genetic diagnosis that carried lifelong consequences. As parents, nothing prepared us for how to cope with the diagnosis of NF1 for not one, but both of our children.

Our family's blessings and privileges are far beyond what we deserve. We enjoy the love and support of countless friends and family. We live in the shadow of one of the world's best medical research hospitals in the world. But at the end of each day as we tuck our children into bed, the reality sets in once again. There is no cure, no treatment, nothing that will take the word neurofibromatosis out of our vocabulary.

Those are dark moments that NF families know all too well. In those moments, we have choice to continue to live in the darkness of fear or choose to be a part of something far greater than ourselves and fight for the light of hope. This is what we have chosen since our son’s NF diagnosis of 2011. The journey has not been easy, and at times our faith has faltered, but being in the presence of over 1,200 people gathered at the CTF BeNeFit II in Detroit this past weekend gave us renewed hope. Somewhere in that room Saturday night, we pray the tipping point was present among the approximately $3 million dollars raised for Children's Tumor Foundation.

As we adjourned for the evening, CTF President and Chief Scientific Officer Dr. Annette Bakker came up to me and with fierce determination in her eyes said "we are going to beat this. I promise." I believe her.

There are dedicated physicians, scientists, and benefactors that believe a cure will be found in our lifetime. I know because I have met them and I seek them out. I want them to know the longing of my heart as a mother and wife. I want to offer them my deepest gratitude for their tireless efforts on behalf of my entire NF family, numbering more than 2 million worldwide. I believe in them.

We are grateful for the incredible hospitality we received from the Gilbert Family, for Dr. Bruce Korf and his nomination of our family for this award, and everyone with the Children’s Tumor Foundation for allowing us such a memorable experience at the CTF BeNeFit II. We were touched by the countless attendees that came up to us throughout the night to share how moved they were by our family's story. We hope that in our transparency, we can continue to show others that faith, hope and joy can exist in spite of the challenges of living with NF.

Upcoming Benefit in Detroit

We are are humbled and honored to receive the Children's Tumor Foundation's 2014 Strength and Honor Award at the BeNeFit II in Detroit next Saturday, November 22nd. Little Philip and Helen have their super hero outfits ready to go and their parents and grandparents have some super hero accessories to reveal on the big night as well!

As so many of you know, our journey with Neurofibromatosis (NF) continues to be one of anxiety and emotional exhaustion as we struggle to anticipate and manage the unknown future for our son, while maintaining a willingness to thrive as a family in the face of NF. We have a rather bird's eye view of the promising clinical research in progress due to our incredible medical team headed up by Dr. Bruce R. Korf. Dr. Korf is a wealth of knowledge and provides us with a regular dose of hope and encouragement that a cure really is possible in our children's lifetime. We are thankful to Dr. Korf for his nomination of our family for this special award.

 But that cure is only possible with the support of research provided through the Children's Tumor Foundation. As you approach the end of the 2014 year, if you have the desire to have a lasting impact on the future of our children's health and the health of over 3 million people worldwide living with NF, please consider making a donation today. We would love to know how to acknowledge your support by your designating your gift in honor of our family but there is the option to remain anonymous as well.  Simply click on the BeNeFit II image below to make your donation.  

This BeNeFit II will be a joyful event for our family because of the hope and encouragement of everyone in our lives that loves us so well through your prayers and encouragement. We are also thankful to the Jennifer and Dan Gilbert for their generosity in hosting this important event again this year.  If you don't know Jennifer and Dan Gilbert, you should.  We have had the pleasure of learning more about this amazing family over the last few months and their ability to intertwine their business success with their passion for supporting philanthropic endeavors close to their hearts.   We very much look forward to meeting the Gilberts and thanking them for this opportunity and their tremendous support for NF research.    

We look forward to sharing our experience with you in some very special ways following the event so stay tuned!  As always, thank you for being a part of Team Moss as we work towards a cure for NF in our children's lifetime.

Samford Football NF Awareness Event

Here in the South, football is a way of life each fall.   I have had the privilege of working at Samford University for over four years now, helping to support a vibrant campus life experience for all of our incredible students. This year, our family was given the opportunity to promote NF awareness at a September home football game.  Joining us at half-time was another local NF family and their son, as well as some faithful Team Moss supporters from Samford and Vestavia West Elementary.  Thanks to our friends in Samford Athletics, we were able to raise awareness while releasing blue balloons for NF.  Little Philip and Helen were able to join the "voice" of Samford Bulldogs, Mike Grace, on the Samford sports network for a quick radio interview at the start of the second quarter.  Little Philip had practiced a few lines to raise NF awareness and he more than delivered when given the opportunity to grab that microphone.  

It was such a great day to smile, to be a supporter of Samford football, and to accept emotional support from family and friends.  At the end of the day, we again reflected on the blessings of family and friends that surround us- our neighborhood, our places of work, our church, our schools, and our present community as well as friends from our previous communities where we have lived over the course of our lives. We can never say thank you enough for the gift of encouragement you all provide to our family!

Gleevec Therapy

Little Philip began taking 100 mg of Gleevec on Friday, August 22nd.  After educating ourselves about what the potential side effects could be, we have been pleasantly surprised that he has not experienced anything adverse.   We returned to Dr. Reddy on Wednesday, September 3rd to run lab work to check kidney, liver, and thyroid functions and again, there were no concerns. His dosage now doubles to 200mg day and we will continue to watch for some of the more common side effects until the end of this four month chemo regimen.  The MRI in December will show whether or not this drug therapy is stabilizing or shrinking his neck tumor.

Since we had extra time before our scheduled appointment this week, we walked across the street to the UAB Callahan Eye Foundation Hospital to see the artwork by Jeffrey Hanson, a fellow NF hero who is visually impaired due to an optic nerve tumor caused by NF.  Jeff also designed the artwork for the CTF Racing4Research sponsored Compass 360 racing team.  We were able to see his car up close and personal this past spring at the Barber Motorsports Park.  I'm looking forward to reading the book Lessons from CLOD:  An Inspiring Story of Art, Philanthropy, and Entrepreneurship, written by Jeff's father, Hal Hanson who is also a doctor.  As Philip and I walked back towards Children's Hospital this was the conversation:

Mom, does Jeff Hanson have to have MRIs like me?

Does Jeff have to have blood drawn like I do?

Does Jeff have to take pills like I do?

These are questions that pain my heart.  These are questions no parenting book prepares you to answer.

I was so thankful that seeing Jeff's artwork opened up an honest dialogue with my son that is rare these days.  Perhaps it is because he is a nine year old boy and becoming "too old" to talk with his mother as freely as he used to.  Perhaps it is because he doesn't know how to handle all the confusing emotions and questions swirling inside his heart and mind.  Yesterday, for a brief moment, he looked me in the eye and asked these questions and I answered.     My prayer is that he will continue to reach out to me and his father when he is scared, when he has questions, and that we can be a place of safety and reassurance for him as he fights this battle.

Otherwise is it a very busy season for our family due to work, studies (dissertation in progress for Big Philip) and general family activities.  Helen is enjoying kindergarten again this year and continues to take gymnastics and Little Philip has chosen to pick up chess as an after school activity.  Helen is crazy excited about gymnastics and Little Philip is crazy good at chess.  They are a source of incredible joy to our hearts.

Drug Therapy Decision and Exciting News

A rare blog post by Big Philip, whose usual writing these days involves his dissertation towards completion of an EdD in Higher Education through the University of Alabama. 

Son, in 35 years of religious study, I have only come up with two hard inconvertible facts: there is a God, and I’m not him. 

Father Cavanaugh, in the film Rudy

The quote by “Father Cavanaugh” in Rudy seems to sum up our situation with Philip.  Making decisions about your child’s health should be easy.  Take this pill and they will get better.  Sure, no problem.  Give them this shot and they will be healed.  Ok, let me have it. Unfortunately, that is not our situation. 

 Neurofibromatosis tumors are unlike cancer or other really bad health situations that you have heard about. NF tumors may or may not respond to chemo treatment. 
Chemo drugs are often used because of the chemicals within the tumor that they target or inhibit. Tumors may or may not respond to current treatment options. And, there are always the potential new drugs, still in the clinical trial phases, that have not been approved by the FDA for children to take. So our next step is to return to Dr. Reddy, our oncologist, and begin the process of getting Gleevec prescribed. We were hopeful to begin Gleevec before Philip started the third grade in order for him to adjust to the side effects but that is no longer a possibility with school starting in two weeks. We were cautious and thorough over the last few months before making the decision to begin drug therapy and that was the right thing to do. There are emotional decisions and rational decisions. Somewhere between the two is where we needed to land. From what we understand about Gleevec, the potential side effects are minimal, mainly abdominal discomfort and fatigue. We expect that we will begin Gleevec sometime in late August or early September.  Please pray that the side effects are minimal so that Philip can enjoy as normal a third grade year as possible. 

 Now for some good news!  We have hinted that we had some exciting news to share in the last few weeks.   If you are an  NBA fan  you may be familiar with Dan Gilbert, the Cleveland Cavaliers owner, and may also know that his son, Nick, has  NF1.  Dan and his wife, Jennifer, have been significant supporters of neurofibromatosis research.

Nick and his dad, Dan, winning the 2013 NBA Lottery

  Last year the Gilberts hosted a fundraising gala "The BeNeFit - A Celebration to Beat NF", that raised over $2 million for NF research.  At that event, the Strength and Honor Award was given to a young man named Victor Chukwueke, whose story is nothing short of incredible. We encourage you to see his story here.  It is truly inspirational and touches our hearts as parents of children with NF1.  

Recently,  Dr. Korf  called to let us know that our family has been selected as this year's recipient of the Strength and Honor Award.    To say that we are blown away would be an understatement.  It is hard to compare our situation to that of Victor.  Our work to establish an Alabama state chapter of the Children's Tumor Foundation is because we cannot just sit and wait for a cure for NF.   Our efforts help boost our faith that in our children's lifetime, a cure will be found so that Little Philip and Helen's hearts are not burdened the way ours are for the health and well-being of their children.  And so, our family will fly to Detroit in November to receive this honor and look forward to adding this moment of hope to our family's journey to further awareness for the importance of improved funding for neurofibromatosis research.  Helen and Little Philip are beyond excited to fly for the first time, and Helen is already planning her fancy attire.  

We don’t know what the future holds with our medical conditions but we do know that we will continue to talk about our experiences and will offer encouragement and guidance to support others diagnosed with neurofibromatosis.  As always, thank you for your love, your prayers, and all manners of support and encouragement you provide to our family.  

When God Doesn't Answer

My son was first diagnosed with neurofibromatosis in 2011.  There was such unimaginable heartbreak in my life that year that I had to fight very hard to stay strong and be the very best mother I could be to both of my children, hiding the dark fears and anxiety that plagued me during a time of great grief and sorrow.  I look back at that time and realize I was desperately holding onto my faith, but also holding my breath and waiting for an ending that I prayed I might share in countless testimonies.   Given my story, it would no doubt pack houses of God with wives and mothers eager to hear how God made good out of utter despair.   I could win the race to make it to God's glorious victory lap He had in store for me.  The race turned into a marathon that is still in progress in 2014.

I am a woman of faith, a faith that has grown deeper due to a journey these past few years that I would not wish on anyone.  I have tried to come up with a more eloquent way to express this, seeking a more optimistic and encouraging story that may be of some use or encouragement to others.   I read the Bible, sometimes intently, sometimes half-hearted, sometimes dismissing it for weeks or months at a time. I seek and read stories of endurance through great trials and even greater heartbreak than my own.  I compare my pain to the misfortunes of others who have the courage to be vulnerable in sharing their stories.   I feel brief solace in the recognition that things could be worse, but I quickly seek forgiveness for such a feeling, overcome by strong feelings of guilt for having the audacity to compare my difficulties to those of others for my own selfish reasons.  I wake up asking for wisdom, and I go to bed asking for wisdom.  I seek wisdom to know God's plan for me, for my son, and for my family.   I believe God has a plan to prosper and not harm me (Jeremiah 29:11) and I repeat this verse to myself often.  I  memorize and hide countless verses in my heart in an effort to bolster my spirit so as not to succumb to the fears and anxiety and let darkness take hold of my heart. Romans 12:12, 1 Thessalonians 5: 16-18, and my latest favorite, Isaiah 45:3.  

A friend recently wrote to me and said "I pray that should my family ever face struggles like yours, that I would be able to face them with the same strength as you do."  I am so appreciative of encouragement like this.  I am forever indebted for the thousands of prayers that have been said on my behalf, and on behalf of each member of our family.  Something deep inside of me shudders to think where I would be without the power of these prayers in my life.  But in the last few months, the marathon has worn me out.  I am battling with God about what his will is for my life and the life of my child.  My latest attempt to make sense of this side of heaven is in the book When God Doesn't Answer Your Prayer, by Jerry Sittser.  I try hard not to place my hope in this book because I learned the hard way that my hope cannot be rooted in anything earthly.  I do hope that this book provides additional wisdom to me.   Sittser clearly shows a biblical support for why God can handle my anger and my complaints, literally my assault on his power.  He gives examples of Job and Jeremiah, who called God to account. In these stories, these men finally snapped and let God have it.    My fear is that the point of this book, like so many I have read before, is to share that I am to use my pain for the betterment of God's kingdom.  And if that is what I am called to do, I will do it.  I've already accepted that role as a Christian.   But doing it with joy and steadfast hope is the challenge. 

With a clenched and angry jaw I cry out to God...

 What about my son's illness could possibly bring you glory?  

Why would you use a child as your pawn?

Why a mother's desperate love for her child to seek your own glory? 

Where is your grace in all of this?

Why would I share this terribly depressing part of my heart in such a public way?  Perhaps sharing where my faith is right now is more transparent and honest than simply saying "God is good, all the time." I feel myself the greatest hypocrite when people praise me for my incredible faith and spiritual strength.   I desperately needed to confess where I am right now because I know I live in a broken world with other believers who have had their heart torn to pieces by circumstances different than my own.  I want them to know they are not alone and that at the very least, I know God can handle the anger and resentment, the questions, the cries of feeling betrayed, the agony of seeking His grace and redemption when he seems (I stress seems) to turn His back on our fervent prayers.  I don't know anything else but to continue to pray that God will come quickly and reveal to me the light I so desperately seek that only He can provide.  The wait seems insult to a barrage of injury but I am confident He will answer.

The best prayers often have more groans than words.

- John Bunyan

July Oncology Consult

Clinic 8 waiting room at Children's Hospital

Today we made the short trip to Clinic 8 at Children's Hospital to meet with Dr. Reddy, pediatric oncologist. We met with her in March, and the recommendation then was not to make any decisions about chemo and to wait until the June 2014 MRI. As a reminder, Philip does not have cancer. He does have a large nodular plexiform tumor in his neck that is displacing his carotid arteries and has begun to push on his airway. It fully involves many important nerves so the idea of surgically removing it is not up for discussion, unless it becomes a life threatening situation.  There is always the 10-15% chance that his tumor could turn malignant.  Surgery is our last resort due to the significant risks and permanent life altering nerve damage that would result. Because of the shape of the tumor, its growth has been measured in volume and has been slow and steady.

There was a growth in volume from January 2014 to June 2014. Over all, the tumor appears to have gone from 80ml to almost 160 ml over 18 months of MRI imaging. Philip has no pain and no difficulty breathing or swallowing, although mom (Renie) notices more heavy breathing lately (possibly her paranoia or what she calls intense concern). Our concern is that we will watch this slow tumor growth take over everything in his neck and be left with no choice but to operate.

 The main problem with chemo options is that there is a low success rate of any available drugs working due to the slow growth of neurofibroma tumors. They just behave differently than cancer and other malignant tumors. The same drugs will not work on NF tumors. We understand that the success rate of the drugs in use today for NF tumors is around 20%. The reason we would take such a low percentage chance is that this is our only option.  Philip does not qualify to participate in one of the latest clinical trials that offers the latest chance of hope until he is sixteen. He turns nine next week. And, as with any clinical trial, there is no evidence that this latest trial is the miracle drug over 2 million people worldwide affected by NF desperately need.

The drug we are considering is called Gleevec. It is a twice a day oral chemo drug with relatively low side effects. Dr. Korf will consult with Dr. Reddy before our appointment with him on July 24th to make sure that our medical team agrees on this step in Philip's NF journey. We want to make sure this decision does not remove us from any future clinical trials in progress that may offer more hope. There are no easy answers.

 There is no clear path. We do not feel confident in this decision. However, we feel even less confident doing nothing.

Birmingham NF Walk

How can I put into words what has been running through my mind and heart since Saturday? Family and friends, we are truly blessed this side of heaven by all of you. Thank you so much for sharing your time, your talent, your treasure, to help Alabama NF families host our first annual Birmingham NF Walk. We had over 400 registered walkers, and the Alabama CTF community raised over $52,000 for Children's Tumor Foundation. Team Moss had walkers and donors that are former students or colleagues from Birmingham-Southern College, Samford University, Mississippi State University, Centre College, Wesleyan College, walkers from our wonderful Mountain Brook Community Church family, our current Blind Brook Lane neighborhood, our Vestavia West school community, our Trinity CDC family, our former Montgomery Lane neighborhood friends, our high school friends from Haywood County and Homewood High School, our Faith Presbyterian friends, cub scout friends, gymnastics friends, Bible club friends, friends from our time at Mountaintop Preschool, family that came from Tennessee, Mississippi, Georgia, from all over Alabama, dear friends from Vanderbilt, Mississippi State, my amazing Samford students and colleagues, and the list goes on and on. I have never liked being in the public eye but when it comes to fighting for my children, I'm willing to put myself in any position to raise awareness to bring us closer to finding a cure for NF in their lifetimes. Thank you, dear ones, for joining us in this fight, and for your continued prayers that so encourage us.

Hooray for Dr. Ray

Remember way back in November when we met with Dr. Peter Ray to discuss removing what appeared to be a growing tumor on Philip's forehead?  At that time, Dr. Ray elected to wait, see what the tumor looked like in the January 2014 MRI, and then make a decision.  He wanted to make sure we were not sacrificing any nerve function around the eye and forehead.  We met with him in February and elected to move forward with surgery.  March 24th,  Dr.  Ray removed the tumor, and even though we held out a small hope that the "growth" was not a tumor, the pathology report came back as neurofibroma tumor tissue.  The good news is that Dr. Ray was able to completely remove the tumor without any nerve damage.  He was extremely detailed in reviewing every single concern, and that's the kind of doctor this mama likes.  Give it to me straight, and don't leave anything out. 

We met with Dr. Ray today for our post surgical appointment and gave him a huge high five for a successful surgery.  There will be a small scar on Philip's forehead but it is not noticeable due to his boy band haircut.  We will meet with Dr. Ray again in about six months to double check for any tumor regrowth but for today, we are calling this a victory in our NF journey.

NF Walk Update and Little Philip Update

We thank you for the sacrifice of your time and resources to support research to fund a cure and treatment for neurofibromatosis (NF).  When we started this medical journey with Little Philip over two years ago, we never expected to be the recipients of so much prayer, so much love, so much support. We are forever changed as a family because of NF but have always been surrounded by your love and for that, we are eternally grateful.

For those that have donated but are unable to be with us on May 10th.  THANK YOU!

As of today, Team Moss has raised $11,040 and currently has 130 members!  Team Moss is comprised of family, friends both near and far, our children's classmates atVestavia West Elementary, former classmates from Trinity Child Development Center, friends from our Mountain Brook Community Church, colleagues and college friends from Birmingham-Southern College, Samford, Vanderbilt, Mississippi State, and neighbors.  In the name of research we've even let in a few Ole Miss Rebels.  Overall, the 1st annual Birmingham NF Walk is just $5000 from meeting its $30,000 goal with one month to go.  Please share our NF story (attached) with your family and friends to help us meet our overall goal and to increase education and understanding of what NF is.  Here is a quick definition:

Neurofibromatosis  (NF)  is a genetic condition that causes tumors to grow throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, and learning disabilities.  

For those that will be joining us in Birmingham for the walk on May 10th:

We recognize that many of you are coming from out of town and have asked for recommendations for nearby hotels.  We recommend  Holiday Inn Birmingham/Homewoodlocated at 492 Wildwood Circle North in Homewood,  just off of the Lakeshore Drive exit of I-65. This hotel has an indoor pool and kids eat free in their reasonably priced hotel restaurant. There are several chain restaurants and fast food locations within walking distance, along with a Starbucks for those of you who share Renie's affinity for good caffeine.    Additional hotel recommendations that are in that same area, literally just down the same road -  La Quinta Inn and Suites, and Hampton Inn.  

We are working on plans to have a Team Moss celebration party after the walk on Saturday evening for those that are in town and can join us. 

If you would please reply to mossrenie@gmail.com and let us know

1.  When you plan to arrive and where you are staying

2.  If you are in town Saturday, May 10th night.  

3.  Your t-shirt size and sizes for anyone else registered within families. (this is very important!)

Your reply by April 26th will help us  in planning a fun and memorable weekend.  If you have any other questions, please do not hesitate to contact us.

For those that are still considering donating to CTF or joining us to walk on May 10th:

Please donate or register at the web page for Team Moss here.  Be sure to select the "Join Team" button or "donate now" button on the right hand side of the screen.  

How is Little Philip doing?

Just over one month after the NF Walk, Little Philip will endure his sixth MRI in less than three years, requiring general anesthesia due to the location of the tumor in his neck.  After four separate specialists appointments and a thorough review of his case in the past few months, his medical team has not been able to agree on a chemotherapy drug that would halt the growth of this particular type of tumor.  As a result, the tumor is slowly encroaching on his airway.  We know there are many worthwhile charities to support but please understand that NF is a a tough contender to receive attention from the "big dogs" at American Cancer Society and larger non-profits who that have huge overhead administrative costs. Philip's doctors are wholly supportive of our support for Children's Tumor Foundation's strategy (financial report here ) due to the low administrative costs, and significant funding directly from the Children's Tumor Foundation for clinical trials that one day, may offer hope for our son.   Here in Birmingham, our doctor, Bruce Korf,  literally wrote the book on Neurofibromatosis.   

If you do not feel led to respond to this NF Walk, we would welcome the opportunity to discuss one on one with you what the Children's Tumor Foundation does and why we endorse and encourage your support.  We are now the state leaders for the Alabama chapter of Children's Tumor Foundation and are committed to four goals: fundraising, advocacy, patient engagement, and support for newly diagnosed individuals and their families.  

  

Please forward this email and share our family blog at www.mosshouse.blogspot.com to increase awareness and help us connect with other families affected by NF.  If you have friends that would like to make a donation in the name of Team Moss directly to the Children's Tumor Foundation by mail, I have attached a donation form that can be included with donation.  I have also attached the Team Moss flyer to this email that shares our NF story. 

On behalf of Team Moss, we thank you and look forward to hearing from you soon,

Renie and Philip Moss

View the Moss Family NF video here posted on the UAB Department of Genetics homepage.  

Helen's 6th Birthday

We celebrated Helen's sixth birthday this past week.  Six years ago we were ill prepared for the day she was born.  My husband and I were in the middle of a raging stomach bug that had left me incapacitated the previous 72 hours.  My husband had succumbed to it the night before her arrival, announcing at 6:00 a.m. that he was not leaving the bed. With full empathy for what he was experiencing, I started the day with the intent of allowing him the grace and support he had offered me the previous three days.  As I exited the shower sometime around 6:30 am my water broke.  Poor hubby dragged himself out of the bed as we quickly rushed to get two year old Little Philip to day care for the day and make the necessary phone calls to both sets of grandparents to begin their drive from out of town to meet us. Helen arrived a little after 2:00 p.m.. March 18, 2005, a healthy 7 pounds, 12 ounces.  She was supposed to arrive some time around April 6, 2005.  I still clutch my belly thinking about what another three weeks would have shown on the newborn scale.

Early.  If there is one word to describe Helen, that would be it.  She was our surprise gift from God, as we learned in 2004 that our silly earthly plans were out the door, and heavenly plans were in progress for us to become a family of four.  She was an early arrival on March 18, 2008.  And as any friends or family know, Helen is an early riser.  The only time she has ever slept until 8:00 am was due to a fever.  She is a planner, providing early instructions for her seventh birthday within minutes of her sixth birthday party ending. Writing letters to Santa on December 26th each year for the next year.   While the early rising is clearly inherited from her daddy, the early planning and execution of complex event coordination is most definitely inherited from her Type A mother.  

Happy birthday, Helen.  You are such a joy and light to us and everyone that knows you! 

Helen also saw Dr. Korf this week for her annual NF check up. While she has a few new harmless cafe-au-lait spots, common in children with neurofibromatosis, there were no concerns. Now that she is six, we are about a year away from being mostly out of the woods for any potential optic glioma tumors and plexiform tumors that usually present before age seven. Hooray for some good news and the ability to breathe a little easier as spring arrives!  But, as an expert planner and providing early communication for the Birmingham NF Walk, Helen reminds everyone that has not yet registered for the May 10th Birmingham NF Walk to do so today! Visit www.nfwalk.org/al to register or donate.  

Oncology Consult Review

We completed our final consultation today with Dr. Alyssa Reddy, pediatric oncologist at Children's Hospital here in Birmingham.   We checked Philip out of school around 10:00 a.m. and headed to the Egg and I for brunch so that he could use his reward coupon he earned from Mrs. Krusinski for being a diligent reader.  Since it is due to expire March 21st, he has been rather insistent that he be able to use it soon.   This seemed like the perfect day.

All smiles!

From there we headed to Clinic 8 at Children's Hospital for our noon appointment.  Let me just say that it is a place of great hope, anxiety, and fear and probably everything in between.   This is the hematology and oncology clinic.  Many children were wearing masks and some were clearly undergoing intense treatment.  Parents looked tired, encouraged, worried, hopeful, exhausted, and I'm probably missing 90% of what was really going on in the hearts in that room which makes me completely inadequate to communicate.   We observed nurses and other staff calling patients by name, passing through the waiting room greeting children and families with warm smiles, kneeling down to get on the level of each child.  There is a strong sense of dedication and care in Clinic 8.   If this is where we may be spending some time in the future, it was an encouraging observation to file somewhere in the back of my mind...just in case.

Dr. Reddy was very informative and made us feel very confident that she had fully reviewed Philip's medical situation.  I don't think we expected to be given a silver bullet to cure Philip today but I think we had talked ourselves into expecting to hear about an encouraging chemotherapy option for our son.  

Dr. Reddy talked about two drugs that we knew about and gave us the name of a new one (Tamoxifen) to consider as she and the rest of our medical team talk about what direction we take.  None of them offer a guaranteed positive outcome but have shown some improvement for some patients.  I guess we knew this but hearing it again just stinks.  For now, we will remain in the wait and see mode.  We will wait until after the next MRI in late June to have another check on tumor growth rate.  We will wait until summer before a decision to start on a chemo regiment that will be less invasive for a school-age child.  We will wait until July in the hope that a miracle cure will be discovered in the next four months.  We will wait....

That sounds pretty dismal but this is just the reality of living with NF.  "Time is on our side" is the quote I remember most from Dr. Reddy today.  These NF tumors are very slow growing and that is one reason why they do not respond to typical chemotherapy drugs.  Slow growing is good in that Philip is still not experiencing any pain or risky symptoms from his tumor.  Slow growing is bad in that we just do not know if and when a symptom may show up that warrants action.  One month, one year, two years, 10 years?  If the tumor continues to encroach on his airway, what can we do?   Is that action chemo?  What if that fails?  Surgery?  We just don't know.   As of  March 11, 2014, there is no effective intervention to confidently shrink Philip's tumor.   We would love for someone to tell us we are wrong.

So ending on some positives:

1.  Philip is NOT IN PAIN

2.  Philip is not showing any serious concerns other than the obvious cosmetic issue of a large tumor

3.  Fellow students and friends are not bullying or treating Philip differently because of his tumor.  

4.  Philip seems ok with talking to peers who ask him  "what's wrong with your neck."

5.  Dr. Korf is a rock star in the NF world.  We are in the best hands possible.  

6.  God has our precious son in the palm of His hand.  He's got this.  

7.  God has placed such a strong community of support around us through our church, community, and work place.  The outpouring of prayers and thoughts has been incredible.  

No one could have prepared us for how much we would need #7.  #7 reminds us that #6 is true when we find ourselves doubting and then we remind ourselves of #1-5 to return us to the peace of trusting #6 again.  As someone who is a complete control freak, it takes a lot to admit I need something that I can't do for myself or my family.  This is a hard lesson for me in allowing the body of Christ to minister to our family and for me to be ok with admitting that we need it and accept it.  We need it and we are so grateful for all the love and support we have received.

So, if you haven't had a chance to sign up for the Birmingham NF Walk scheduled for May 10th, perhaps this update will motivate you to join with us, Team Moss, to raise funds and awareness that moves the Children's Tumor Foundation towards making our hope a reality in finding a cure for NF in our children's life time.  Sign up to "Join My Team" or "Donate" on the right hand column of Team Moss's fundraising page. 

Image from Philip's January 2014 MRI.  The white mass on the left is the tumor.   His jaw line is on top, spinal column in the center bottom. The tumor is NOT in his brain but rather, in the neck.    The solid black area in the middle is his airway.   This shows why airway is our greatest concern for tumor growth.

ENT Consult Review

Today we met with Dr. Audie Woolley, Philip's ENT.  Dr. Woolley did the original surgery on Philip back in 2011 that resulted in his NF diagnosis.  That little 2 cm tumor he removed back then has grown significantly, and is now the subject of many, many medical voices as everyone seeks to provide the best medical recommendation moving forward.

So our consult today was not good news.  Dr. Woolley was professional, kind, and incredibly informative.  We truly appreciated it when he asked the nurses to take Little Philip out to the lobby so he could speak candidly with us as parents.  When he returned, he shared that Philip's situation is very bad.  Basically his neck is full of golfball sized tumors.  Dr. Woolley differed in opinion from Dr. Korf's opinion in that Dr. Korf believes the neck to be one large lobulated nodular tumor.  Dr. Woolley's opinion is that there are several lobular tumors, all involving different nerves.  Neither opinion changes where we stand right now.   The main tumor of concern does involve the vagus nerve, as Dr. Korf had previously indicated.   This is the most concerning of the tumors due to its encroachment on the windpipe and esophagus.  To operate at this point would mean loss of significant function.  The only reason we would operate is if Philip develops issues with breathing, swallowing, or if he develops debilitating pain from his tumor.  There is a mild obstruction in his throat due to the tumor but it is not currently affecting his breathing or swallowing.  If we do have to operate this is what we are facing:

Tumor on the 12th cranial nerve - partial loss of tongue movement
Tumor on the 11th cranial nerve - significant loss of shoulder movement and nerve function
Tumor on the vagus nerve (10th cranial nerve) - loss of voice box function, permanent hoarse voice
Tumor on the 9th cranial nerve - partial loss of sensation at back of throat

Dr. Woolley estimates there are about 6-8 tumors in Philip's neck, all involving major cranial nerve function, and again, the one of greatest concern is the vagus nerve, also the hardest to get to should we need to operate.   People can function without a vagus nerve, but aside from the loss of a voice, many people have significant abdominal issues with reflux or emptying of the abdominal cavity.  It's not pretty but it is doable.  We pray we don't have to find out.

He strongly encouraged us to consider chemotherapy to try to shrink or stabilize these tumors.  He said he would consult with Dr. Alyssa Reddy, pediatric oncologist, after our March 11th consultation with her, and as with other specialist we have met with, all would report back to Dr. Korf who continues to serve as our "quarterback" to call the best shot Little Philip has.

Dr. Woolley shared that he has had about three significant NF patients in his 20 years of ENT practice.  He has consulted with the "big guys" as he calls them down at UAB, including Dr. Bill Carroll and Dr. Eben Rosenthal about Philip's case and they all agree that surgery means significant morbidity, meaning,  sacrifice of significant bodily functions.  We like what we see on all three online vitaes for these three men and are appreciative of Dr. Woolley's professional approach to seeking multiple perspectives prior to meeting with us.  Dr. Woolley is highly regarded in his medical field.  We are in good hands.

While we were viewing the MRI with Dr. Woolley in the clinic's computer kiosk area, we sensed the concern on the faces of nurses and other medical personnel as they watched over our shoulders the computer screen showing the massive bright white tumors that take up so much of the space of our son's neck.  As we exited the clinic, the silence was deafening,  We passed through a sea of smiling faces whose eyes turned quickly to Little Philip, revealing great concern for him.   It was almost too much for us to hold our emotions together and not fall apart in front of our son.

The patience required of us until our March 11th oncology appointment is torture.  But as anyone that has followed our story knows, we believe in a greater God than this broken, messed up world offers. We continue to hold firm to our faith that God has great plans for our son.  Little Philip's sweet spirit and incredible passion for being a good friend to everyone is a sweet balm to our weary parental souls. His smile, his giggles, his silly personality, it makes our hearts burst with love for him.   God intends him to be a light in this dark world.  We believe that with every fiber of our being.

A sweet friend was such an encouragement to me today.  She reminded me of a beautiful verse that has spoken volumes to my heart today as I tried to keep it together and carry on with the day as a mother, wife, employee, and friend.

And I will give you treasures hidden in the darkness - secret riches,  I will do this so you may know that I am the Lord, the God of Israel, the one who calls you by name.  

-Isaiah 45:3

That verse is going up all over our house as we bind it to our hearts and minds in the coming weeks. We pray that it may be an encouragement to you as well, if you are facing darkness and fears in your own life.  

We continue to covet your prayers and good thoughts, specifically for Little Philip but also for us as parents as we seek to be loving, and encouraging to our son.

Neurosurgery Consult Review

Philip enjoying the morning snow on February 13, 2014

Today we met with Dr. James Johnston, neurosurgeon at Children's Hospital of Alabama.  This is one of the three appointments Dr. Korf wants us to have in order to better understand the direction we will take if Philip's neck tumor continues to grow the way it has so far.

Given Philip's tumor's growth, about 20% this past year, is outpacing his typical growth each year. Eventually, serious concern may appear.  Those specific concerns cannot be fully predicted at this time.

• We know that as of today, both carotid arteries and jugular are displaced by the tumor and other important blood vessels are heavily involved by the tumor. 
• The tumor is growing around the windpipe but as slow growing as the tumor has been, it has not constricted his breathing or ability to swallow, even with the small area behind his left tonsil that shows slight pressure on larynx. 
• Then there are the nerves involved.  Facial nerves are certainly a concern, as is the vagus nerve that runs from the abdomen through the neck and into the brain.  The thought is that this tumor is growing on the vagus nerve, a very important nerve not to damage. 
• Vocal chords are not affected at this time, but could be.  
• There is some very minor deformity to some bone structure as well.  

In other words, there is a lot going on in that section of the neck so for this to be the place for a tumor, makes it difficult to predict.    When you see the size and shape of the tumor, it is hard to believe that Philip has no pain and no symptoms at this time.

It sounds like we are at the end of the watch and wait approach.  After our next MRI in June 2014, we will likely be looking at some kind of chemo option and if that fails, ultimately knowing what kind of surgical approach is going to be best should we have to make that difficult decision.

Dr. Johnston says the entire team listed below, along with him, will form a full review board of Philip's case  to make the best medical recommendations to us.

Dr. Audie Woolley, ENT Monday 2/25
Dr. Alyssa Reddy, Oncology, 3/11
MRI (pray for no growth) - 6/20
Dr. Bruce Korf - end of June to evaluate where we stand

As parents, this is emotionally exhausting. We are scared, but God knows that and is bigger than our fears.  We pray for peace and an increase in wisdom as we take these next steps as parents of a child with significant NF health concerns.  And most of all, we pray that we can make Philip's life as joyful and care-free as possible.  At age eight, he is wrestling with questions most children his age would never think to ask.  We have always said we do not want NF to define him, but with so many doctors appointments, it is hard for him to not ask questions and worry.  Our hearts feel like they want to burst from how much we love him, and want to see what God has in store for him.   He's a pretty special kid who just lights up the room with his special sense of humor and sweet spirit.  Thank you for your continued thoughts and prayers!

Team Moss has set a $5000 goal supporting efforts to find a cure for NF.  Join us May 10th at Railroad Park in Birmingham for the first annual NF Walk, providing support for the outstanding work of the Children's Tumor Foundation.
Team Moss's Team Page for NF Walk 2014 Birmingham, AL

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