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.
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