Monday, December 01, 2014

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.









Tuesday, November 11, 2014

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.

Monday, October 06, 2014

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!





Thursday, September 04, 2014

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.



Tuesday, July 29, 2014

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.  

Monday, July 14, 2014

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

Wednesday, July 02, 2014

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.