End of Induction

On Monday Lexi had her end of induction bone marrow aspiration and lumbar puncture.  We were told the results would be in later in the week, and we had an appointment on Friday to review them.

On Tuesday, Lexi had her normal PT session.  She was not nearly as cooperative as in previous sessions.  We also decided to have her signed up for OT as well.  We had her initial appointment on Wednesday.  She has some great fine motor skills, but she does have some weakness.  The goal of OT will be to keep her moving forward and not regressing.

Wednesday afternoon I got a call from one of the clinic doctors with some of Lexi's test results.  They said her bone marrow shows no signs of leukemia cells under standard testing.  However, they also do minimal residual disease (MRD) testing to check for trace amounts.  Ideally, you want to see less then 0.01%.  Lexi's came back at 0.85%.  My heart dropped.  They said she is now classified as very high risk.  It means we need to treat her more aggressively.  They asked if I had any questions and said we could discuss in more detail at the appointment on Friday.  I didn't have any questions right then, but its gonna be a long two days until Friday.

Thursday, Lexi had a great day.  I'll be listing that day in a separate post.

Friday afternoon we finally met with one of Lexi's doctors.  She is in remission.  There is no evidence of leukemia cells in her bone marrow.  However, as previously mentioned, her MRD did not come back at the desired level.  What this means is that there is still microscopic residual disease left.  By being classified as very high risk, means her chances of relapse are much higher then they would have been had the levels come back lower.  Because of this, she will be monitored more closely and be treated more aggressively. While we would have prefered for her to have remained standard risk, there are worse things that could have happen.  Her bone marrow is currently clear and it is important to remember that. 

We discussed the treatment plan for the next phase.  There are a lot of different medications and timetables and such.  As it was late in the afternoon, and we had to go pick up Annie, we didn't get get the treatment calendar yet, we will get it on Monday.  Monday will be another lumbar puncture.  So once again, she will not be allowed to eat or drink after midnight Sunday night.  At least she isn't on steroids this time. 

There will be times where she will be home with her port still accessed and we will have to administer meds to her.  Thank god for home health aids who will help with that!  There will be several lumbar punctures.  There will be some appointments that will be many hours long, as she will need 4 hours of hydration after meds.  Or just close monitoring.  Once we get the calendar, we will have a better handle on the treatment plan.  For now, it was just a lot of information to process.