Day 13

Good news today.

Dad spent his first full night at home and K and I hung out.  Kennedy went to bed about 9:30 last night and got up for her midnight snack and playdate around 11:30.  We had a sleepless night as K was still on the I.V. fluids so I needed to take her to the bathroom 3 times between 1am and 5am (the time she woke up).  Included in that was her 2am snack time.

The steroid has really increased her appetite, she out eats me 2:1 and my day was filled with satiating her endless hunger.  She eats a full meal about every 2 hours. 

Aunt Julie came to hang out with us for the first part of the day.  The second half of the day was filled with eating and creating art projects.  I even convinced Kennedy to spend sometime in the playroom (she hates to leave her room).

Dr.  Manera gave us two bits of good news today.  First, Kennedy’s cytogenics results showed that the chromosome abnormality that caused her B-type ALL leukemia is associated with a more favorable outcome.  Second, her blood tested on day 8 showed an MRD less than 0.01 which is again associated with a more favorable outcome.  If the day 29 bone marrow test is less than 0.01, she will be considered low risk and her cure rate at 95%. 

Infectious disease doctors came in to talk to us about Kennedy’s staph infection.  The secondary draws both are negative and type of bacteria strain was identified. Her antibiotics have been changed.  Her stay will be until Friday or Saturday (at best case) and then we will need to give her the antibiotic through her port at home for an additional week. 

Tonight, Maddox and I hung out and wrote this blog.  I came home to a ton of packages…or as Maddox says, “Kennedy got lotsa presents”.  Thank you to all who have sent something and I apologize if we have not acknowledged all of the kindness.  We are so grateful for the prayers, emails, support and gifts for Kennedy and Maddox. 

I am especially thankful to Aunt Julie who flew in from AZ and has done everything - including taking Maddox to swim lessons and keeping him company, getting me out of the house for a quick workout, running out for thermometers and bringing Kennedy her favorite meals of the day.  We are sad she is going home tomorrow.