Saturday, November 5, 2016

There's a lot of catching up to do!

So Annie successfully completed the second phase of treatment, CONSOLIDATION, in September. 
During that process she had 12 erwinia shots, 4 lumbar punctures a.k.a. spinals (with sleepy medicine), 2 red blood transfusions, 1 platelet transfusion, 28 days of mercaptopurine chemo pills, 3 other types of IV chemo given over numerous days including the weekend, lots of tape (one of her biggest complaints!), press and seal and so many Valerie Center visits it's hard to keep track of.

Despite the intensity though, Annie  was generally happy, riding her bike, swimming (with no floaties - in the deep end) and playing.  In fact, aside from occasional nausea and fatigue,  you wouldn't really notice much wrong with her (aside from the obvious -hair - which incidentally is a thin layer of peach fuzz now).

Annie celebrated most her 5th birthday in the Valerie Center, playing with Kelly (the Child Life Specialist) and Oliver and Tich.  The center got her a huge ice cream cake  (and gifts) which was shared with everyone there that day!
Kelly (Child Life Specialist ) playing SLAMWICH with the kids at the Valerie Center

Happy 5th Birthday Annie


Her counts went pretty low (under 200)  at the end of September which caused a delay in the next phase called "Interim Maintenance."  Delayed initially from counts one week and then delayed another chunk of time due to a very strange rash (later diagnosed as Gianotti-Crosti) and a need for a red blood transfusion, Annie didn't start her first of four inpatient IM stays until October 6.  

During our inpatient treatments, Annie gets a spinal the day of admittance, a dose of Vincristine (a chemo drug) and a IV drip of Methotrexate that runs over 24 hours.  The goal is to have her excrete the drug in a certain amount of time. The levels of methotrexate are tested at 24 hours, 42 hours and 48 hours.  If she is under the required level at each of those timeframes she gets to leave after 72 hours of fluids (timed from after the start of the drug).  The effects of the methotrexate can be rough, so they give her Leucovorin ( a drug used as an antidote to effects of certain chemotherapy drugs, such as methotrexate) every 6 hours.  Annie hasn't had too many adverse effects.  Her skin actually bares the brunt of it and she has gotten some mouth sores, but otherwise has tolerated the drug fairly well.
Annie and "Ella" passing the time during an inpatient stay

big bag of methotrexate

Today we completed our 3rd round (of 4) inpatient stays.  I would say the novelty has certainly worn off about our days "living" at the hospital, but with only 1 more to go we can deal with it!  We also get a week off - no needed visits to the Valerie Center!  Perfect timing for election week/ Teachers Convention (teachers you know what that means!).  Still can't believe that it is November ....time flies.




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