We celebrated Clay's 8th birthday last weekend with a few of his friends at the Melting Pot, a fondue restaurant. We had been there once before, when Clay had vision, and he had good memories of dipping, cooking, and eating the food. That first visit was with family; this birthday visit was with 7 kids. The whole hot-oil and timing how long your food is cooking (really, asking kids to cook their food for 2 minutes without a timer?) took on a new level of challenge, but we did it, and everyone had a good time. They spelled his name out in brownies for part of the dessert.
http://www.upi.com/News_Photos/Featured/2013/12/upi/4c606b630592bfde1ddd42fd986c1628/First-Lady-Michelle-Obama-visits-Childrens-National-Hospital-in-Washington-DC/?spt=hfp&or=1 This was the first time that I joined Clay for the two hours in the MRI room. Clay had an audio tape to listen to, but nonetheless, it is two hours of listening to very loud knocking, whirring, and occasional jackhammer noises. All while lying perfectly still. The scan quality deteriorated as the time wore on due to some motion on Clay's part, but thankfully they got what they needed and we are free for another three months. Yesterday we reviewed the scans, and things are stable. The doctors have been told to add some more "checks" for kids in the second year of the trial, and that additional monitoring will start next month. Some children are having heart irregularities and muscle breakdown, so we will pray Clay shows neither of these side effects.
Dr. Raabe, the doctor at Johns Hopkins who is managing the research we (and many of you!) are sponsoring to help build a mouse model for Clay's disease, was covered recently on his research. You can read the article here: http://www.sciencedaily.com/releases/2013/11/131107093828.htm It is crucial that other drugs be developed that shut down these tumor's pathway's without doing devastating damage along the way. The drug Clay is on is one such drug, but currently only a handful of kids in the country are on this drug. Since the long-term side effects are unknown, its use will be limited to two years. Currently there is nothing waiting in the wings for Clay when these two years are up. So this research is the most critical next-step for kids like Clay.
My involvement in Clay's condition has been bumped to a new level as I just completed my first semester of a Master's of Education in Vision Studies program that will prepare me to work with children who are visually impaired. My first courses were Introduction to the Visual System and an Audiology class. These classes felt very much what I imagine medical school would be like, all filled with anatomy and disease. I am excited that everything I am learning is going to benefit Clay and other children like him, and it feels good to be putting an official stamp on work I was already doing on the side.