So long MDACC (for a while)!

So today was our last visit to M.D. Anderson for a whole month!  Can you believe it?  Me neither.  Not really sure what we will do with a whole day to ourselves!!  Since Josh has been back to work we have gone to have labs and review done every Wednesday (which you know is his only full day off all week).  That takes at least half the day and we just have not been able to get out and do much with the kids like we normally do.  And since Josh has gone back to work it has made his weekends feel SUPER short.  Yuck! 

So you know how we have been waiting for ALL the blood stuff to come back normal???  Well, it didn't.  Kinda built that up to be exciting.  Sorry.  Actually there was a smidgen of concerning news today.  His white blood count was still good, but his platelets had fallen to below the normal range.  Not by much (just 10) but still enough to have me good and worried.  Joshua too.  If you remember when he started treatment they were 859 above the normal range.  So now he is starting to have the opposite problem!  They told us that if it continues to fall they will have to adjust his dosage of nilotinib.  Which we really don't want for them to do.  The doctor has told us that people have the absolute best response when they take the "highest tolerable dose."  So we're praying it was just a fluke and his platelets jump back up the next time we go.  It will be hard to wait a whole month!!

Speaking of the next appointment, we got confirmation this week that they have changed the bone marrow aspiration to be done with sedation.  Josh is so very relieved.  For a while there he thought he was going to try it the regular way again, but he just couldn't do it.  They haven't told us if the insurance has approved it yet, but I honestly don't think Josh cares! :)  Pretty sure he will make payments on that bill for the next ten years if he has to!

And it's hard to believe but Josh missed another nilotinib dose!!  That makes 2 doses in six days he has forgotten.  He called me the night before last while he was driving to work and told me he forgot to take it!  Now people with an ordinary job would just turn around and get the vital medicine and just be late, but not JP.  He just had to go to work cause he cannot put his job in jeopardy.  So he has put an extra dose in a key chain pill holder and another dose in his lunch kit, just for emergencies.  A few weeks ago we put a dose in the key chain and then let the valet have the keys while we were at MDACC.  So Josh had to have them recall the car, get the pills, and then take the car back.  So very ridiculous, aren't we?!

So after our appointment we came home and picked Annie girl up and turned right back around and drove back to the medical center for her 9 month checkup.  Craziness!!  We called to verify the time of her appointment but they didn't have record of us having one.  So they told us they would work us in.  So we spent hours at MDACC this morning and hours at the pediatrician this afternoon.  Not a great way to spend the weekend.

So being specific, please pray for Joshua's platelets over this next month!  We need for them to return to the normal range and actually stay there this time! :)  Thanks for all the love and support you guys!