Saturday, December 29, 2012

First MRI on new trial

Clay was to have his first scan since beginning this latest experimental protocol on December 22 but due to him having a cold the Docs postponed it until December 24.   So Clay, JD and I spent Christmas Eve day at Childrens' Hospital listing to the whirring of the MRI machine.  We met with Clay's oncologist on December 26 to review the results.  The doctor is "encouraged" primarily by the lack of enhancement on this scan.  Enhancement indicates tumor  activity,  the more active the tumor  the more contrast dye it attracts which appears as white on the otherwise black/gray scan.  The last MRI in October showed lots of white areas in the main tumor.  This MRI showed much less white. So the Docs feel this reveals the medicine is doing something to the tumor.  It will take another MRI to tell if we will get shrinkage.  Unfortunately shrinkage is what we need if Clay is going to experience any improvements in his symptoms such as his facial palsy, spinal fluid blockage or  especially his vision, which is of course what I (and many others) have been praying for.  Clay's adaptation to his blindness has been slow and halting.   For the first time in the nearly four years of his fight Clay seems discouraged.   He is truly grieving this huge loss in his life.  And nothing drives home knowledge of this loss more than the Christmas season which is filled with so much visual stimulation.   He has received many wonderful gifts from family and friends that are geared to a blind person.  In fact, one family who saw the Post article is having their children read chapters of books and are e-mailing us audio files.   But Clay has not yet "embraced" a blind life, and to be honest we are not there yet ourselves.  So for now Clay will remain on this drug trial with some notion that it is providing some benefit and our hope it will produce the shrinkage he needs to give his vision a chance of returning.   

Friday, December 14, 2012

Happy Birthday Clay

Today Clay is 7.  To celebrate his birthday we are going duckpin bowling with a few friends of his.  Our family did a test run last weekend to prepare him, since every new situation is challenging for him without his sight.  By the end of the game he was throwing the ball down the lane, but at first he refused to bowl.  Bowling, especially duckpin, is a good activity because of the audio feedback--he can hear the pins go down.  For his school class treat today he requested cookies from a nearby French bakery, and tonight we are going to dinner at a Mediterranean cafe that is his new favorite.  His taste buds, along with his hearing, are working extra hard these days. 

Both Grace and Clay are going to Sunday school each week at our church where they have wonderful teachers. Clay's teacher has her 6th grade son come in each week to be Clay's buddy, which makes him look forward to class.   In preparation for Christmas they were asked to write letters to Jesus, and I was touched by the beautiful simplicity of Grace's:

Dear Jesus,
Thank you for... my parents, my brother Clay, my grandmas, my cousins, my uncles, my aunts, Katie, enough food to eat, Abby, good books, ice skating, clothes, my dog Pearl, Laser tag, softball, animals, Christmas, God, Thanksgiving, and my Birthday. 
 Love, Grace
What touched me about Grace's letter is that she included mostly people and activities, not things (not even her  It reminded me of the book by Robert Fulghum, All I Really Need to Know I Learned in Kindergarten. Here is a bit of his poem:

Most of what I really need
To know about how to live
And what to do and how to be
I learned in kindergarten.
Wisdom was not at the top
Of the graduate school mountain,
But there in the sandpile at Sunday school.

These are the things I learned:

Warm cookies and cold milk are good for you.
Live a balanced life -
Learn some and think some
And draw and paint and sing and dance
And play and work everyday some.
Take a nap every afternoon.
When you go out into the world,
Watch out for traffic,
Hold hands and stick together.
Be aware of wonder.

So to Clay, my beautiful, kind, amazing boy, who has already taught us more of these lessons than a lifetime ever could, Happy Birthday.