April 18

Long, hard day for MJ.  We arrived at Children's at 7:45am for labs and then a doctor's visit. Madelyn and I are still here.  


She has been incredibly tired since Thursday evening.  Friday she was despondent.  Saturday I deduced she had mucusitis.  Sunday she lacked energy and needed pain meds all day, BUT we were able to get to the park.  It made us so happy to see her smiling and genuinely enjoying herself.  It also made us sad because she was so obviously a sick child.  She needed serious help to get up stairs and to walk form one place to the next.


I was worried when we went in this morning that she might need a transfusion.  Her platelets we low, but not terribly low.  


Hem 40.1    Plat  182    WBC 2.3    ANC 722


Her ANC has to be above 750 to start the second phase of Delayed Intensification.  Scheduled for April 25.  I'm not sure we'll start on time.  Her counts will still be dropping this week so she might not recover in time to begin on schedule.


She had incredible belly and throat pain during her doctors visit.  She was screaming at the top of her lungs and crying uncontrollably.  It was awful.  They gave her some morphine, ordered a belly xray and gave her some fluids via IV.  Even though she's had regular BMs lately (I am Little-Miss-Anal-Kathy recording eeeeeeverything), her system is backed up.  She has started Miralax to get things "in-gear".  The mucusitis is in full swing and more morphine was needed by about 2pm.  Literally she was just full-tilt screaming in pain.  It was sooooo hard for her and us.  The doctor decided we should be inpatient tonight to get the pain under control. 


The morphine did it's job and she finally had a meal - a big meal - at dinner.  And then she threw it up.  So she had another meal.  


She also lost about 75 percent of her hair TODAY.  Big bald patches.  She wants to collect it. We have this big wad of it - probably the size of a shoe - in a ziploc.  I keep talking about all the cool things we can do with a bald head - tattoos, head painting, our cool wigs and hats.  She seems ok, but she hasn't seen herself yet either.


She hasn't wanted to watch TV this visit.  That tells you how truly awful she feels.  She only wanted to read one book.  All she wants to do is color her pictures.  In a little notepad today she had a whole page full of suns with smiley faces.  Another page full of houses.  Another full of stars.  And I mean packed in there.  Not a blank space to be had on the page.  I find this very interesting.  I don't know how to decipher it, but it is obviously telling of what is going on inside her head.


This morning she asked me when her treatments were going to be done with a long, sad face and a couple of tears.  She said she was tired of going to the hospital and taking medicines.  "When am I going to get better Mommy?"  I wish I could tell her "soon baby soon."