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.  


Connie Sorman said...

What a great honor! Praying thanks for no side effects and significant results for little Phillip! Hugs and love!

Amy Ord said...

A well-deserved award! You are in our prayers daily!

The Youngbloods said...

What a great and well-deserved away! So proud of all the work you have done!

Helen said...

Way to go Moss's! You have made incredibly tough decisions and we are behind y'all 100%. We pray for the research to find a cure and for your family.

margaret said...

Congratulations on such a deserved honor! You are all in my prayers daily!