Today was the last day of our inter-treatment period.   We had great experiences with friends and family.  Tomorrow, treatment starts again. 

We thought we were going to go to Lurie Children’s Hospital for treatment, but after some additional phone conversations, we decided to switch to Comer Children’s Hospital at the University of Chicago.   That’s where we’ll be tomorrow for an MRI and lumbar puncture, which will be used as a baseline before the start of chemotherapy.  He will also have his baseline audiology assessments as one of the chemo drugs is very hard on hearing.

Then, on Monday, Alexander’s inpatient chemotherapy will start.

We are both very apprehensive about the tests.  We are scarred by the experience of the test results we received at St. Jude, tests that revealed the small tumors on his spine and the possibility (likelihood) that the cancer cells had invaded his CSF.  Though we have no reason to think there will be new tumor growth right now, we already fear the possibility of it.  This will be a constant fear in our lives for the next five or more years.  Will this be the scan that brings us unbearably bad news?  Each one could be.

Dr. Merchant told us, as we were consenting to radiation, that all we would care about going forward are clean scans.  We know he was right about that.   Mostly, we know he was right because we can see how Alexander is thriving now.  There will be late effects of radiation–there always are–but we can cope with those.  We will give him whatever he needs.  But we can’t give him clean scans.  Only the treatments can do that.