Tuesday, May 1, 2012

Collin had his MRI this morning, and we met with the doctor this afternoon to review the results. They weren't what we wanted to hear.  The doctor called the MRI "suspicious." It seems there is a new spot, in a new location, that wasn't there before. The problem is, the area doesn't enhance, which means it doesn't get brighter with the contrast dye. So, they're not sure if it is a new tumor, or if it is just some inflammation from the 3F8 treatment in March. So, over the next few days and weeks, the doctors will be gathering the information that will help us decide what to do next. They sampled Collin's CSF through the ommaya reservoir to see whether there are tumor cells present in it, and will let us know the results tomorrow. If there is enough frozen tissue left from 2010, they will test it for the protein needed for a treatment similar to what he did in March, called 8H9.  If his original tumor has the protein, we will move forward with the 8H9 treatment. If not, we may be looking at restarting the metronomic therapy he did before the 3F8 treatment, and then doing cranio spinal radiation sooner than we had hoped. Collin will have another MRI in 3 to 4 weeks to keep a close watch for any any further changes. Needless to say, I'm scared to death, yet again. I just can't believe this is happening. I don't know how I'm supposed to function over the next few weeks, just waiting......