Tuesday was Day +6 and went quite well.  Naomi was awake earlier than she had been in recent days.  She had a little blip on the radar in the morning – she vomited just a little bit, presumably from the effects of the chemo.  She also said she was very tired, but I think she was just bored because she did not display much fatigue throughout the day.  We were watching a movie online and I felt inspired to draw a lion on her window with markers.  Seeing me do this, she turned off the game she was playing on the iPad, ignored the movie (which I then turned off), and proceeded to draw on the window with markers for hours.  While drawing and listening to music, the physical therapist came in and we bowled, did gymnastics (beam and balance techniques), and played kickball.  It was a blast!  Naomi had so much fun and we all laughed quite hard.  It was nice to see her having so much fun.  When the PT left, we drew on the window some more.

In the evening, Nanny and Lauryn spent some time with her.  I hear she was again using the markers…. but this time as drumsticks and the portable commode was the drum.  Nanny said that Naomi was really drumming and the nurses were happy to see her that way.

Before going to the hospital in the evening, Nanny, Lauryn and I went to the Old Spaghetti Factory for dinner.  While there, I asked Naomi what to order her for dinner.  She said spaghetti and meatballs.  So, I asked if she would rather it from OSF where we were.  She replied, “no hospital food yay yes please!”  We all laughed at that.  She ate 75% of a very large portion of spaghetti and meatballs!  The nurse was quite impressed at the amount of food she ate throughout the day.

If you logged on earlier in the day and saw a post that disappeared about her hemoglobin rising, I apologize.  When I called for an AM update, the nurse told me that Naomi’s hemoglobin was up to 10.8 and that the the previous day it was 10.08.  I am not sure that I heard her right, or maybe she gave me mis-information.  But when I got to the hospital and saw the labs and compared them with previous day’s reports, I saw that Naomi’s hemoglobin did not actually go up at all.  It went down quite a bit, actually.  So, that was disappointing.

But we press on.  Day +6 was an exciting day because Naomi received her very last scheduled dose of chemotherapy!  Her last dose of methotrexate was given at 8:45pm.  We are very happy that is over and now as we go into our second week of waiting, the excitement is increasing.

Look at how far we have come!

Friday 01/10/14 -5 Admit to Peds 3 West Fludarabine 30mg/m2, Cytoxan10 mg/kg
Saturday 01/11/14 -4 Fludarabine 30mg/m2, Cytoxan10 mg/kg rATG 15mg/kg 
Sunday 01/12/14 -3 Fludarabine 30mg/m2, Cytoxan 10 mg/kg rATG 1.5mg/kg 
Monday 01/13/14 -2 Fludarabine 30mg/m2, Cytoxan 10 mg/kg rATG 15mg/kg 
Tuesday 01/14/14 -1 rATG 15mg/kg Start CSA 1.5 mg/kg lV BID
Wednesday 01/15/14 0 Infusion of bone marrow
Thursday 01/16/14 ‘l MTX 10 mg/m2
Saturday 01/18/14 3 MTX 5 mg/m2
Tuesday 01/21/14 6 MTX 5 mg/m2

Day +6 ended with Mommy and Naomi snuggling in bed together and watching a movie.  Mommy woke up with Naomi wrapped in her arms and the tv off.  Mommy then tidied up the room, refilled the diffuser with lavender and snuck out of the room and back to the hotel.  Considering where we are and that we have to make the best of the situation, it was the end of a really good day.