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. 

Wednesday, February 11, 2015

Post-Surgery Checkup

Clay and I went to Hopkins yesterday and got the all clear from his surgeon-- "no restrictions" -- not even on unloading the dishwasher, much to Clay's dismay.  It was wonderful to have such a happy appointment, and to see his surgeon so pleased with Clay's progress and the outcome of the surgery.  I have been thinking a lot lately about the job of a neurosurgeon.  Are there any other jobs where one person so directly impacts the life of another?   I am reminded of the joke,

"What is the difference between God and a surgeon?"
 "God doesn't think He is a surgeon." 

But really, I get that stereotype, but it is true -- God is certainly in the surgeon's hands and in his brain, and in his choice to do this work.  We were fortunate to have the best.  He told us that he was able to remove about 80% of the tumors he took out, which should give Clay some space in his spinal column and put him out of immediate long as we keep the tumors from growing back. 

Which leads us to tomorrow, which will be a very long day at Children's.  Clay has 4 tests (ophthalmology, EKG/ECHO, Clinic) and a brain/spine MRI to get through, in order to get back on the re-treatment of the clinical trial drug he took for the past two years.   We feel very cornered where we have to do whatever they ask of us in order to be considered for re-treatment.  The protocols are not written with concern for the children and what they experience, but for the researchers and the data outcomes.  If a person is the sum of all they experience, it is my quest to try to provide experiences that will help Clay feel like he is a 9 year old.  Some days, some months, that is almost impossible.  So we focus on the positive, and our friends and family help. 

Just this week, Clay's Boy Scout den came over to present him with the news that while he was out, one of his fellow scouts, Griffin Walker, built him a car.  They raced the car during the Pinewood Derby, and it came in 2nd Place!  They did a great highlights video and the kids can be heard chanting "CLAY, CLAY, CLAY!" during the race, while Clay's white car with all their signatures  on it crossed the finish line.  Clay loved the visit, which ended with him showing everyone his large scars on his back and the boys, mostly open-mouthed, saying, "Cool."