Monthly check in

Yesterday Clay and I had appointments with his oncology team as well as his physical therapist.  He received medication for the next month, which is Clay's 6 month on this trial.  Physically he is doing great - he has regained most of his facial movements and he has gained weight and height in the past month.  The doctors are working on approval to get this medication into a Phase II clinical trial.  This is a very positive note and means that they are seeing enough response with no debilitating side effects from the 12 children currently in the Phase I trial (Clay being one of them). 

Clay is adjusting to a longer day at school.  He is doing very well with his new Braille teacher who came to Arlington after teaching for years in a school for the deaf and blind.  She told me the hour she spends with Clay each day is her favorite hour of the day.  Clay sent me his first e-mail from school the other day: "hi mom this is your buddy. see you soon."  He has an iPad, a laptop, and a brailler at school and he is learning to use all of them.  Braille is important so he can learn to read and write; but keyboarding on a computer is going to be the easiest way for him to communicate with sighted-teachers and pretty much everyone else he needs to communicate with. 

The best thing about today is that Clay is feeling so well, and the worst thing is that he cannot see.  We are praying for a cure, for a miracle, for an intercession from God to restore Clay's vision.  I know it can happen and I am hopeful it will happen for Clay.  Each day brings challenges, but also laughter and happiness.  The other day I came upon Clay in the kitchen where he was petting one of his small stuffed animals, and saying "I miss seeing you" to it.  Tears of sadness came to my eyes.  Then, later in the day, we were in my bedroom when Grace came running in.  She jammed her toe on the door frame, and started crying.  Finally, through sobs, she said "my little toe, I jammed my toe..." to which Clay replied, "Oh, I know Grace, that hurts so much, I do that all the time now!"  We all laughed, most of all Clay.   His positive spirit continues to lift us all.  It will be four years on Easter Saturday that Clay has been battling this tumor. 

"Survival activates miracles when a person relies on the graces of hope and faith." - Caroline Myss