November 27

It has been a long time since I've posted an update. I think this is because it is much easier to share good news than bad. Clay's October MRI showed tumor progression. This caught us by surprise since overall Clay has been feeling well and we were hoping for him to get a break that lasted years, not months. So, after discussing our options with several of the leading pediatric cancer centers in the country, we are leaning towards trying a "biologic." This is the newest type of treatment, and an alternative to chemo. These drugs aim to shut off the blood vessels that feed tumor growth. Whereas chemo kills all rapidly dividing cells (both good and bad), these newer treatments are a more targeted approach. Johns Hopkins has one in a clinical trial and this seems to be the best option; targeted to his disease, and hopefully fewer side effects than chemo. The uncertainty is in whether the drugs will actually work, since they are new, and therefore have far less data behind them then the other protocols which are 10-20 years old. Clay will have another MRI next Friday to get a pre-treatment baseline, and then we will make our final decision.

In spite of this setback we have had a good Fall. Clay has gone to school each day, and he has made new friends. When I pick him up he is almost always smiling and eager to share news of his day. As we walk across the schoolyard to meet Grace he calls out "hellos" to any friend he sees getting on the buses. He is enjoying learning and likes the routine of school. His teachers are wonderful and eager to see him succeed, but also very accommodating to his needs (such as naps --taken under their desks sometimes).

Please keep Clay in your thoughts and prayers on Friday for good results on the MRI. I will post another update once the protocol is set.