Interim Maintenance I

Long time no post.  We've been keeping busy, and waiting to find out when and where things are headed. 

On May 4 we wrapped up Consolidation Part II.  I thought we were all set to start the next phase, Interim Maintenance I, on May 11.  On May 8 we went in for a numbers check, and her ANC had dropped.  It must be at least 750 to start a new phase.  It was down to 650 (from 1200 on Monday).  This meant a week delay.  This is completely normal.  It would have been more abnormal to not have a delay.  A one to two week delay is what was expected.  I just got my hopes up because her numbers were so high that Monday. 

On May 15 we had another numbers check, to see if we cleared for admission today.  Her ANC had dropped even further to 250.  However, there were signs that her numbers were on the way up.  So they had us come back to clinic at 8:30 this morning.  Her new ANC is 1900, so to the hospital we went.  We got here around 10:30, and at 11:00 she had another bone marrow test and LP for meds.  She will be starting her 24 hour IV chemo soon. 

With the bone marrow test they will be running the MRD(minimal residual disease) test again.  This is the test that classified her as very high risk last time they did it.  I'm really hoping her numbers come back at zero this time.  I can't help but worry about that a bit.  We should get the results Monday, maybe Friday. 

Now that we have started Interim Maintenance I, we now have an end date for Lexi's treatment.  The two year treatment clock starts today.  She will be finished on May 18, 2017.  I can't wait. 

For this phase, Lexi will be in the hospital this week (5/18) and again the weeks of 6/1, 6/15, and 6/29.  Each time she will be in for approximately 4 days.  From what they have said, depending on how she does, she could get out as early as Wednesday night, or as late as Friday.  We won't know until we get there.  And it can vary each time we are in. 

Other recent changes were her PT and OT schedule.  Initially, she had PT Tuesday mornings, and OT Wednesday mornings.  This worked well in the beginning when I had to wake her up in the morning for meds, or she was up early because she was hungry.  At the time, she also didn't have the energy for more then 45 minutes of therapy.  Thankfully, as I have burnt out on so many appointments, and Lexi has not been waking up early, we have compressed her schedule.  She now goes to PT followed by OT on Wednesday afternoons. 

The best news in the phase, is that we will be able to go away for vacation!  We had originally scheduled (before all this began) to go to the Outer Banks the week of 6/1.  We will need to reschedule for a week Lexi isn't in the hospital, but at least we get to go!!