Oct 22

 

JD here.  The last six weeks have brought little positive health news for Clay, much confusion about next treatment steps, and numerous examples of the goodness of people and the presence of God in our lives.   Unfortunately, there has been no improvement to Clay's eyesight. His most recent MRI showed some new disease activity that led Clay's team of doctors to conclude that the latest experimental therapy being administered at the University of Pittsburgh had failed.   The plan was to enroll Clay in yet another experimental drug trial (this one can be administered by Children's National so no long distance travel) but the day before the process was to begin he developed partial paralysis on the right side of his face.   Adding insult to injury Clay now has a "droop" on the right side of his face and it slurs his speech.  Since the protocol for the study requires the patient to be "neurologically stable" for seven days, this latest event forced us to give up Clay's "slot" in the trial.  The past week has been filled with countless phone calls and emails as we and Clay's medical team have worked to get the author of the study to create an additional slot for him.  Clay's doctors (Drs. Packer and Jakacki) have been particularly aggressive in using all of the influence at their disposal to help, for which we are very grateful.  We learned yesterday that the study has been enlarged to include Clay.   Of course he needs to remain "neurologically stable" until Thursday morning to be able to qualify.   We are holding our breath until then---while this therapy has not yet been tested in children under 12 years old, the results have been very positive for some of the children 12 and over.  While the promise of this experimental therapy gives us new hope we are constantly aware that we are running out of "tools in the tool box" to use to help Clay.

While the medical situation is as clear as mud Clay is doing his best to adjust to his world without sight or light.  The Jamestown School has been very responsive and has established a special education program for Clay that allows his to go to school from 9am-1pm.   To help Clay socialize his teacher instituted a plan to have a few children from his class join Clay for lunch.  We learned at Clay's teacher/parent conference that instead of this being a bother for his classmates, his teacher is having to set-up a rotating schedule to handle the demand to join his lunch program.  His classmates have been welcoming and understanding -- showing a level of empathy and support well beyond their 6/7yrs of age.  Of course these latest setbacks have caused a new level of frustration for Clay, yet, despite all of the pain and fear his spirit remains strong.   Example:  "Dad, I had a great day today; I learned 4 more braille letters!"  We thank God every day for giving us Clay.