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.

Wednesday, May 6, 2015


We got the good news late on Monday that the tumors are again responding to the medication!  The MRI showed shrinkage in all places where the tumors were progressing when Clay was off medication during the winter.  So big smiles all around. Since Clay is the first child back on treatment after the 2 year trial, the doctors were uncertain what the response would be overall, and particularly where Clay had surgery.  So Clay's doctor also had a big smile on her face.  Thank you to everyone reading this for routing for Clay this past week!

Monday, April 27, 2015

3 Months In

Clay is finishing up his 3rd month on the re-treatment trial.  That means it is time for another MRI, which is scheduled for next Monday.  Please keep Clay in your prayers that the drug is working and his tumors have stabilized.  The lack of an update over the past month has meant good news, as Clay has been feeling well and has fully recovered from the spinal surgery.   It was such a L O N G winter.  We were happy to get away to Delray, Florida in March for Spring break, where we soaked up the much needed sun rays.   Since then, Clay has been keeping busy on weekends with Tae Kwan Do and swimming lessons.  Both are helping rebuild his strength and stability.  He has earned one star and a 1/2 bar so far in Tae Kwan Do.

Saturday, March 14, 2015


Clay's class had a "poetry reading" event at school yesterday where they each read a poem they had written. At the end, they each read a bit of their "Someday..." poem.  Here is Clay's:

Friday, March 6, 2015

Talking to NIH

As you may recall, J.D. and Clay spent a day on Capitol Hill last year meeting with several Senators and Congressmen about the low level of funding from NIH that goes towards Pediatric Low Grade Gliomas.  Just last week, Congressman Chuck Fleischmann (R-TN) took their meeting to heart, and questioned NIH Director Francis Collins on the status of research into PLGA brain cancer.  You can watch the video here (it is short, don't worry!).  This is a great step and we are thankful to Congressman Fleischmann for using his precious minutes of air time to get the issue in front of the NIH Director. We are working with the PLGA Association to get more families and supporters to follow up with letters and calls to NIH supporting this initiative. 

Clay is doing well back on the medication, and we pray his next MRI in April will show stability in the disease. 

While we like snow as much as the next guy, we are getting antsy for Spring, like everyone on the East coast.  With Clay's recovery from surgery and then piles of snow days, we are burning through lots of firewood. Daylight savings time begins on Sunday, which is a step in the right direction.

Saturday, February 14, 2015


Thursday was a very long day as we knew it would be. It started at 8 am at the clinic with signing the consent forms to begin the re-treatment trial and doing routine exams. Next, cardiology for an EKG and ECHO exam. Next, the routine eye exam (really?) to make sure the drugs had not damaged Clay's retina. Next, the MRI, which was running a routine 1- hour late.  All went fine to this point, except for the fact that Clay had nothing to eat for 24 hours and he seemed to have picked up a stomach bug along the way.  Post-MRI and anesthesia we wheeled a very "fuzzy" Clay up back to the clinic, to have the doctor come out with a sheet of paper, telling us he could not get the drugs because his sodium and calcium levels were too low.   So we ended our 10 hour day empty-handed and very angry.  That night we pumped Clay full of calcium pills and TUMS tablets, as well as gatorade and salty canned chicken soup (have you checked the sodium levels on that?!).  Friday, I took him to the clinic again for another blood draw.  Four hours later they called to say his levels were still low, but sufficient enough to qualify for the trial and get the drugs!!!  JD picked them up after work, and today Clay started re-treatment.  Big sigh.  No Valentine -- no diamond earrings -- could be better than the 56 small white pills sitting on my dresser.