Treatment ... Phase Two: Consolidation

So Induction is over!!!  Wahoo!  We have entered the Consolidation Phase.  This phase is approximately 2 months (56 days).  The best news?  - no more steroids during this phase!!! Just look what those steroids did to our little man:

This was day 10 on the steroids

Day 28 of steroids

Wow.

His personality totally changed along with his eating habits (obviously).  He ate constantly.  He had no energy to do anything but sit and eat.  We tried anything we could think of to get him to try puzzles, or coloring, or sticker books ... but he just wanted to eat and watch movies.  And so we did.  We bought a TV for his room (I know...I know, I cringed at the thought) ... we gave him whatever he wanted to eat ... which ended up being mostly: cream cheese sandwiches, chips (yuck) and carrots with ranch dip.  He made us laugh with his antics when we brought him the "wrong" thing.  Especially when it was the "wrong" carrots (he actually wanted snap peas) ... or when the chips were in a bowl and he wanted them in a bag ... or when the sandwich was cut the "wrong" way.  He would scream and clench his fists, tightening every muscle in his body until his face turned red.  One time, he even made his nose bleed.  Ugh, I'm glad we won't face those days again for a little while.

So ... consolidation.  I was nervous for this day.  A week ago, the day after we ended induction, G had a lumbar puncture and bone marrow extraction.  The doctors told us that the tests on the bone marrow are two-fold.  The first test takes two days and will tell us if the leukemia cells are gone.  A second test is rather new and takes four days.  It is more finite.  Where the first test can say the results are negative, meaning 0% ... the second test tells us if there is a percentage between 0 and1% that the first test doesn't pick up (they called this an MRD rate - Minimum Residual Disease).  I found out yesterday that the reason for this second test is that some kids were relapsing even after a negative bone marrow scan.  So, research showed that if the more finite test showed a percentage below .011, then the patient continued on the standard risk arm of the Consolidation Phase with vary rare possibility of relapse (meaning: the leukemia returns).  If the % is above that, even by a little, the patient is moved to the high-risk category and the consolidation phase is more aggressive to prevent relapse.

Yesterday was the day ... and I was nervous.  My awesome husband took our other little people to school - his supermom came to be with the younger girls and G and I headed up to PCMC.  He was in good spirits.  He was able to stand on the scale to be weighed without crying (he did whimper, but let's not be picky :)).  We went into our room, the nurse accessed his port and flushed it with Heprin to make sure it was still working and then the doctor came in to deliver the blow.

G's MRD was .034%.  Bleck.  What does this mean?  Well, for starters it means that he is now high risk (but note: there is actually a "very high risk" stat - which we are not - yay!)  The doctor also explained that the cure rate for high risk children drops from 90-95% to 88-92%.  That wasn't my favorite piece of information.  :-/.  But essentially?  It means that home-health will now be administering chemo at home for four days of the week.  And he will be taking an oral chemo for 14 days.  We will still be going in every Monday for the next three weeks for lumbar punctures and G will get chemo in those as well.  He is now receiving the type of chemo that will make him pretty sick - so he'll also be taking a lot of Zofran.  One piece of good news - there is a positive to him still being in diapers - this type of chemo cannot stay in the bladder for long without causing some significant damage - so....since he doesn't know how to "hold it." I don't have to worry as much about that concern.... I know that may seem like an odd bit of good news...but silver lining peeps!  I'll take whatever I can get :)

We know this isn't the best news...but it's definitely not the worst and we remain very hopeful.  We know he (and we) are still being watched over.  He is an amazing little boy.  So resilient.  So sweet.  So smart.  And so loving.  The nurses love his squishy cheeks and how happy he is when he says "goodbye!"  So...here's to the next 4 weeks!!...after that, it is all count-dependent again (meaning it depends what his blood count says - his body dictates what we do next :)).