New Protocol

Thank you for all of the e-mails wishing us good luck on Friday. It was a very long day at Hopkins -- we left the house at 8 a.m. and got home at 8 p.m. Things were moving along fairly well on schedule until about 3 p.m. The trial we were signing up for had been approved that day, and I was going over the potential drug side effects with the researcher when the final word came in from NYU (the lead hospital for the trial) that Clay was ineligible for the trial. Since his tumor hemorrhaged once, they decided it was too high risk to include him in the trial for fear that it could happen again (an unlikely, but serious side effect of the drug). At that point Clay had had an MRI, x-ray, physical exam, and blood tests done. So, we switched gears and starting discussing plan B. Another oral drug that is meant to switch off what is making this tumor grow. This drug is also in clinical trial, but the trial is closed, so we are doing the drug "off-trial." Enough kids have been enrolled in the trial and are doing well, and bleeding is not a potential side-effect. So for now this is the protocol for Clay and we pray it does what it needs to do. For now we will have weekly appointments to check his blood work, and if all goes ok, another MRI in three months. A special thanks to my mom for keeping Clay happy for hours while I met with the doctors.