Friday, July 31, 2015

All Good

We drove 11 hours on Tuesday from Hyannis, MA to get back into town for Clay's MRI. Yesterday we got the news -- shrinkage all around! Clay has been on the re-treatment medicine now for 6 months, and we got the green light for another 3 months.  The doctors are all very pleased with the way his disease is responding to being back on the medicine, and the best news is that this time there is no forced "end date" for us to stop.  In the meantime, some other MEK inhibitors are making their way down the approval pipeline, and we pray that these will be effective also in the future.

This news capped off a great month in every way.  NJ, ME, MA, lots of action and lots of visiting, 2,100 miles clocked on the car odometer.  Clay enjoyed fishing, learning to throw on a pottery wheel, art class, kayaking, swimming almost daily, and of course consuming lots of lobster and ice cream.  We were lucky with great weather the entire month.  Since we had stayed in the same house in MA last summer, it was all more familiar and easier for Clay this time.  Now we are home for a few weeks, and braille "summer school" is underway...

Wednesday, July 1, 2015

July 1

Several people have e-mailed and called, hoping things are ok since I have not posted a blog.  Things are all good with Clay...he had his clinic appointment yesterday and we got the green light for another month.  Strep hit our house in May/June, and it took Clay a few rounds of antibiotics to clear it.  We think all the time spent in hospitals has made him have a pretty high tolerance for bacteria so strep didn't respond like it should have.  But this appointment brought good news that he has put some of the weight he lost back on, and things are looking great.  His next MRI will be the end of July.

Clay has been busy the past week with BELL camp at a church nearby.  This is a NFB camp (the National Federation of the Blind) and is almost exclusively run by people who are also blind or visually impaired.  There are 5 children, and about 10 volunteers/teachers.  There is one young woman volunteering who Clay finds particularly hilarious, so he is enjoying himself.  They play adapted games, do braille lessons (in a fun way...), make themselves lunch, do crafts, and field trips.  After spending the year being the only cat in a classroom full of rocking chairs, Clay is enjoying being with other visually impaired folks who have the same challenges that he does.  

On Saturday the kids and I head out for most of the month -- a stop in NJ to visit with family, a stop in Maine to visit with family, and then a few weeks in Massachusetts ourselves and some time with friends.  Bliss!  Happy July to you all.