Monday, May 12, 2014

Spring Update

We have been busy the past few months, with no emergency updates.  We enjoyed time with family from far and near over the Spring Break/Easter holiday, and most recently for Clay's 1st Communion which was Saturday.  We were so proud of him walking into the church with a buddy by his side.   His mobility teacher, Nina, met us at the church one day the week prior for a practice session.  Father Burchell prepared Clay to receive the Eucharist, by letting him practicing with an unconsecrated Host.  Saturday morning Clay said to me, "I am so excited today is my Communion! I wonder what the Host will taste like when it is holy!"  Here is one of my favorite shots:

The past month or so I have noticed Clay pushing himself to do more.  He now feels more comfortable going outside and navigating the yard.   For Mother's Day he asked if I would like him to buy me a coffee at Starbucks, and he, Grace and I walked the half-mile to the store.  After school he will often go down to the swing set and play.  He now swings like any 8 year old, and I have to restrain myself from asking him to slow down.  This is something Grace and he can still enjoy together, and as you can see, she keeps her eye out for him (when she isn't fighting with him).

Clay is feeling well and is now on month 21 of the clinical trial.  We are in conversations about our options for the Fall when Clay will reach the 24-month mark and be forced to stop the drug according to rules of the trial.  Our best hope is that there will be an addendum to the trial that will allow the children to be retreated with the same drug should they relapse.  We hope to know for sure within the next month.  At this point Clay has one more MRI in June on this trial, and then 3 more months of pills if all is stable.

As always,  there is lots of research to do.  I went to the Perkins School for the Blind outside of Boston recently, as part of my Master's program.  Technology has provided so many new options for people with low-vision or blindness, and I spent a day with the folks at Perkins who provide these tools, learning all about the products they offer (such as the Smartbrailler Clay uses).  On the way home I met with a researcher at Schepens Eye Research Institute.  Dr. Feng Chen is the lead researcher studying paths to regeneration of optic nerves.  There are several possibilities that are still in the early stages, but she is optimistic that they will find a way to regrow damaged optic nerves within the next decade.  It is just as complicated as bringing new brain tumor drugs to trial, but I left feeling thankful that science, and brilliant people like Dr. Chen, are working to find solutions for currently untreatable injuries and disease.

We have a research paper from Dr. Raabe on Phase 1 of the mouse-model project at Johns Hopkins, and I will post that shortly.  We hope to begin Phase 2 within the next month.