Because we were not in a position to explain what happened on Tuesday, let me explain now--in brief--what happened to produce this turn of events.  As you will see from my description, when we told the world about the initial diagnosis, we were not being hasty or substituting our interpretation for that of the medical professionals.

We went to the hospital because of bathroom accidents Alexander was having.  Christy and Cathy (my mom) went with him Saturday morning, and we all thought this would be a routine scan of his full brain and spine and would not show anything concerning.  When he was taken back for his scan Saturday afternoon, Christy was informed that his scan would only be of his lumbar spine, not of his full brain and spine.  This was a change from what we were expecting, but we felt like we were too far into the process to turn back at that point.

As you know, the scan was indeed concerning, so concerning that the on-duty attending oncologist informed Christy and my mom that the scan showed leptomeningeal disease.  We all knew what that meant; our worlds crumbled in an instant.  Alexander got a room in the oncology wing of the hospital and began to be administered dexamethasone, a steroid, to relieve the pressure doctors thought was caused by the disease they thought they saw on the scan.

On Sunday, Mother's Day, we lived in a state of agony.  There was no treatment to do except to continue the steroid.  On advice of doctors, we traveled home to tell our daughter that her brother had a very short time to live.   This was our Mother's Day.  Saturday evening and Sunday were some of the worst hours of our lives.

On Monday, Alexander got a follow-up MRI of the parts of his CNS not already scanned (i.e. brain and cervical and thoracic spine) to establish the extent of the disease all the doctors thought was present.  After he was sedated, we also consented to a lumbar puncture to check his cerebrospinal fluid for disease--that is, to get a more complete picture of his situation.  It should be said at this point that Alexander handled all this like the angelic kid he is, ready to have fun and showing no sign of physical discomfort or mental distress.  While he was in the scan, we had some of the most difficult discussions imaginable, discussions about how to make Alexander free from pain and fear at the end of his life and whether to engage in life-extending interventions.  We didn't expect to get results from the scan that day, and we didn't, but we couldn't imagine there being any good news from them anyway.

On Tuesday morning, I took Alexander to the play room, his favorite place at the hospital.  We expected to meet with our primary oncologist when she came in later in the day.  At about 10:30, a staff member told me my wife needed me outside.  I went outside and found Christy in a state of panic and hyperventilation.  She told me something I simply did not believe to be possible: that the diagnosis of leptomeningeal disease had been a mistake.  I sat there and listened as our doctor said over the phone that his scan from Monday showed no enhancement (i.e. the bright spots on the image that indicate disease) and, crucially, that the cerebrospinal fluid showed no indication of disease.  The two scans overlapped only by a couple of vertebrae, but the second scan showed no enhancement in those vertebrae, whereas the first scan had.

The doctor told us she had sought out opinions from others in her field and confirmed that the disappearance of enhancement could not happen only by administering steroids.  The CSF being clear was also a very reassuring sign.  The only conclusion they could draw was that the steroid had removed whatever inflammation was present in the spine and resolved whatever had caused the enhancement on the image, and steroids cannot make the enhancement from cancer disappear from a scan.  Therefore, the enhancement on the first scan was not caused by cancer.

When the doctor came in later on Tuesday, she met with us in person and put the chief neuroradiologist at the hospital on Zoom.  The neuroradiologist explained that she had examined both scans and the circumstances surrounding their execution and that she had concluded that both scans were reliable.  In other words, there really was something causing the enhancement in the first scan, and it really was gone two days later.   The only explanation for that is the steroid--cancer doesn't just disappear on its own--and the steroid could not have caused the disappearance if the enhancement were cancerous. 

There are not words to describe how we felt in the midday hours on Tuesday.  I could hardly decide whether to believe what I saw with my own eyes.

Later that day, a neurological clinical checkup was done on Alexander, and the neurologists that examined him were satisfied that the outward signs of his neurological function were normal.  Having heard that the neuroradiologist had issued her opinion, the neuro team was comfortable with us leaving the hospital.  And we were beyond thrilled to leave the hospital Tuesday night.

There are, of course, many more details.  You might read this and have questions.   I'm not prepared to answer them, but it's clear that a very big mistake was made.  We are happy to be home now (I'm listening to Alexander's happy, excited voice ring out across the house as I type this), but we want to do what we can to help prevent this happening to other families.  It was the worst feeling I have ever experienced, and I don't want anyone else to feel it unnecessarily.