Monday, May 18, 2015

Wait Listed

We wanted to update you on Little Philip's health and I will try to be as brief as possible.  Before I do, I want to start by thanking each and every one of you for your continued support through your prayers and encouragement.  
Third Grade End of the Year Pool Party
A reminder that there is no cure to neurofibromatosis and no proven treatment for plexiform NF tumors like Philip's.   Everything we do is to manage the situation as best we can until a cure can be found.   Here is a quick recap of Philip's most recent NF journey.

In early 2014, Philip's medical team felt that the tumor in his neck was growing too fast.  Despite having surgically removed it 2011, it had grown back, starting to surround his airway, displacing his carotid arteries, and involving major nerves in the face, digestive system, and upper body movement.   His physicians continue to be concerned that if they can't stop the tumor's growth, high risk and life threatening concerns could occur.  To date, he has experienced no pain and no concerns.  Our goal is to keep it that way.

Since surgery is no longer an option, Philip began taking oral chemotherapy in August 2014 and stopped taking it at the end of April 2015 when an MRI showed that the tumor had grown an estimated 18% in 9 months.  There is no other treatment that his medical team recommends other than a promising clinical trial through the National Institutes of Health/NCI.  The drug is called AZD6244 (Selumetinib) and there are 50 pediatric slots. 

Philip is currently on the waitlist and as of this past week, his position is a "high teen" number due to his case being considered high risk.  We should know by August at the earliest, or November at the latest if he is selected to participate in this two year clinical trial.  If he is selected, then we will travel to Washington, DC several times a year to complete testing and MRI imaging while on trial.  

Other than having neurofibromatosis type 1, Philip is almost 10 years old, came in third place in his school-wide spelling bee, advanced to Webelos cub scouts, reads roughly 500 pages in books each week, and he is going to be a junior counselor in a chess day camp this summer before heading off to his third year of sleep away camp.  He's super smart, super silly, and has the biggest heart for family and friends.  When children ask him "what's wrong with your neck?"  he says it doesn't hurt his feelings and that he is happy to tell them about NF because it's the only way we will find a cure if more people know about it.  

I should mention that Helen does not show any concerns with her NF1.  Big Philip also does not show any concerns, although he suspects he may have always had ADD from NF1, but he is not using (or allowed to use) that as an excuse in finally finishing his doctoral dissertation in higher education administration.  

We will raise $20,000 in 2015 for clinical research through the Children's Tumor Foundation and, along with several other Birmingham area NF families  we will host the 2nd annual Alabama NF Walk on Sunday, October 18, 2015.  We know that over 70% of all current NF research has been informed by data from Children's Tumor Foundation, including the trial for which we are wait listed.  We also know that over 80% of each dollar raised goes straight to clinical research and patient education and only 6% is spent on management and administrative cost. (Link to CTF financial reports).  We are also thankful for family and friends that participated in the rather scandalous but fun Cupid's Undie Run as "Team Moss"  in several cities across the country in February, raising the first $2900 towards our $20,000 goal.  

If you would like to join us or support us as a virtual walker or donor this year, please register here.  Knowing the walk is only one way to raise awareness,  we are eager to speak with any one interested in learning more about our commitment to support the Children's Tumor Foundation and would welcome the opportunity to share ways others can join with us as well.  
2015 Mother's Day at the Hunt Camp, #ikNowaFighter
Third Grade Bible Presentation at church

Wednesday, May 06, 2015

Chemotherapy Stopped

Today's oncology appointment was important because we knew the disappointing news we were going to receive. Philip's situation is not without hope but the hope is now in getting selected for a clinical trial.
The latest NCI volumetric analysis of Philip's tumor showed approximately 12% growth over 4 months. So, over the course of his 9 months of Gleevec oral chemotherapy treatment the tumor grew about 18%. Gleevec did not work. It was a long shot at about 30% efficacy rate for other patients but it was our only option.
Dr. Reddy, Philip's oncologist, is sending medical records to the National Cancer Institute (NCI) in the hopes he may be selected to participate in a clinical drug trial for Selumetinib Sulfate, or AZD 6244 which is much easier to pronounce. Dr. Korf's office at UAB is also sending all of their records.  We know several families that are current participants in this study and they have shared that their children's tumors have often not only stopped growing, but are SHRINKING while on treatment. At least three of these children have neck tumors very similar to Philip.
We have emailed the principal investigator (recipient of the 2013 Children's Tumor Foundation's Friedrich von Recklinghausen Award) as well as the study administrator. We hope to hear back very soon about how viable this trial is for our son since his physicians consider his prognosis very strong for inclusion. He meets all trial criteria. So now, we wait.
It was very disappointing to leave Dr. Reddy's office today with no return appointment scheduled. But, we are very thankful for everyone that came into our exam room to offer encouragement. That includes Jeff Barrett, Children's Social Worker who always provides us with ways to keep our spirits up; Sasha Ramini, Dr. Reddy's awesome nurse practitioner who knows all my coolest girlfriends; as well as Dr. Reddy herself, who we cannot not say enough good things about. Her commitment to research, collaborative approach with colleagues, strong understanding of clinical trials, and encouraging personality continues to be a blessing to our family.
So, we are not completely without hope, but remind ourselves and everyone that has been praying for Philip that despite the tumor's continued growth, he continues to experience no pain, no discomfort, and is closely monitored by the best of the best in medicine right here in Birmingham, AL. We are so proud of Philip's strength throughout his medical challenges, and his ability to always stay goofy and see the humor in life. Thank you for your persistence in prayer for our son.

Tuesday, March 17, 2015

Chemotherapy Update

We haven't officially shared how Philip's Gleevec (oral chemotherapy) therapy has been going since he began taking it in August of 2014.  Thankfully, all of the main side effects we were concerned about have not happened.  He has had no abdominal discomfort, no headaches, and while he seems to be a little more lethargic than usual, it has not affected his quality of life or academic performance.  He continues to be the goofiest, silliest nine year old boy you have ever met and brings us joy each and everyday through his big hugs and warm smile.

If you've watched the video from the Detroit NF Benefit, you saw that we had one bad night where we were instructed to go to the emergency room after Philip spiked a fever and was sick to his stomach in October.  It was the start of a strep infection that was quickly put down with the usual antibiotics and a day in bed, surrounded by a pile of beloved books to read.  Philip's favorite activity is reading and we estimate that he reads anywhere from 300-400 pages each week.  We are surprised his Kindle doesn't smoke from how often he reaps the full benefit of his Amazon Prime membership. Since that one bad night, Philip has only been sick to his stomach 3-4 more times. That placed him in the minority among his friends who got the stomach bug or worse this winter.  

November was his first MRI after starting oral chemotherapy, his sixth scan (technically seventh since he also had a PET scan in 2013).  The initial radiology report ruled out the scary stuff like malignancy or compressed blood vessels and nerves.  Dr. Reddy reviewed the MRI with us and to the naked eye, it did not appear any larger than in his previous June 2014 MRI.  It is important to know that the way in which Philip's tumor is officially measured is by volumetric analysis, something that is much more accurate than the traditional 2D MRI measurements.  The image below shows why the shape of an NF plexiform tumor makes it difficult to accurately measure growth between different MRIs.   Please note that the image below is not Philip's tumor.  
From http://www.nfmidwest.org/volumetric-measurement-of-tumors-in-neurofibromatosis/

The volumetric analysis showed that the Philip's tumor still grew between June 2014 and the November 2014 MRI, but it was the slowest recorded growth since 2012.  Clearly, something has changed and our medical team believes it is because the Gleevec.  In January 2015, his dosage was doubled from 200mg per day to 400 mg per day.  Again, other than some slight increases in crankiness and lethargy, you would never know Philip is taking chemotherapy.  He is unbelievable. So that is all good news!


We are noticing an increase in the appearance of sub-cutaneous NF tumors on Philip's body.  These are a different kind of NF tumor than the large nodular plexiform in his neck.  They do not pose a risk of turning malignant although some may become painful during his lifetime in a way that surgery becomes necessary.  This is why we had one tumor on his forehead surgically removed in March 2014.  He has a few on the back of his scalp that make brushing or combing his hair painful if you are not careful.   There was a time when these tumors were my worst nightmare due to where they may appear over time and what mean spirited peers might say or do.  Now, these are the least of our concerns, although we are keenly aware of how they may make him more self-conscious over time.  It's just another aspect of NF that we hate because we can't stop them from happening.  

We are gearing up for an April 1st MRI that we hope will show an even greater impact of Gleevec therapy.  We understand that the odds are stacked against us based on the experience of other NF families we know and love that have been here before us.  But, we are remembering the relief we felt from the November MRI that showed slowed tumor growth and hoping for the same outcome or better this time.  

Thank you for your continued prayers and support of Children's Tumor Foundation!  The 2015 Birmingham NF Walk will take place on October 18, 2015 at Veteran's Park.  If you would like to join or donate to Team Moss, select the blue "Join Team" button or the grey "Donate Now" button on our Team Moss webpage.  Our goal is $20,000 and we are confident we will get there by October 18th through the tremendous support of family and friends who have gone above and beyond to love on our family with prayers and support since Philip was diagnosed with NF in 2011.      

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.