Yesterday we got home from inpatient chemo for the last time.  Alexander still has an outpatient chemo infusion next week, but it is a good feeling to know that we are not facing any more planned inpatient hospital stays.  We could still land in the hospital, of course, if Alexander spikes a fever in the next couple of weeks.  We will be extra careful not to let that happen in his last cycle.  Spending most of another week in the hospital would be a major bummer.

You may be wondering what is next for us.  As happy as we are to have chemo behind us, we are facing the uncomfortable prospect of having no more curative therapies to undertake.  We have done all we can to rid him of cancer.  Now, all we can do is wait to see if the cancer has indeed been eradicated, and only time will tell that.

We are pursuing an additional step, though.  There is a drug approved for high-risk neuroblastoma patients that has been shown to decrease the chance of disease recurrence.   Because neuroblastoma is similar to medulloblastoma, a trial is underway to determine whether the drug works to prevent recurrence of high-risk medulloblastoma as well.  It is a Phase 2 trial, which means that there is not yet any evidence that it does work to prevent recurrence of medulloblastoma–that’s what this trial will determine.  But the drug is not a new one and was well tolerated throughout the neuroblastoma trial, so it seems like there is little downside to enrolling Alexander in it, and there may be a huge upside.  Alexander is not yet enrolled in the trial, though–he still has to be deemed an appropriate candidate for it based on the trial criteria.

That brings me to the last, hardest topic.  One of the trial enrollment criteria is a lack of disease progression based on the results of two MRIs.  His last scan, in December, showed no new disease.  We are now gearing up for his next scan, which will happen March 4.  We have every reason to think this one will be “clean” too, but we are dreading it.  These periodic scans are our greatest stressor.  The Sword of Damocles hangs over us by a thread; we just have to hope once again that the thread doesn’t break.