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.