4/9/12 - A slow day

Getting ready to 'tye-dye' in the playroom

All ready to make it smudge!

The finished product :)

Playing a little soccer in the garden

Haylee is STILL doing awesome!  She had a good night - stayed up a little too late but slept until 9am to make up for it.  Dr. Cooper came by to check on her and said she was looking great.  I asked him about her triglycerides going up and down and he said he thought the ATRA was what was affecting it.  Go figure...the ATRA has been affecting her this whole time.  First, mouth sores (that was also the first round of chemo causing it as well), then the whole 'fake tumor' thing and putting pressure on her eyes, now her cholesterol is like a yo-yo.  He said once she was in maintenance and when the ATRA is over she will get back to normal.  For now, as long as the side effects of it can be fixed or maintained it's just something we have to deal with.  The ATRA is important for her treatment...she needs it. 

Haylee went to school this morning and is still doing well with her academics.  PawPaw, Adam, and Mason came down for a visit today.  Mason got a little comfortable on Sunday so he was all over the place today.  We had lunch in the cafe with PawPaw, then went to hang out in the garden.  She was trying to be sneaky and hide from us.  She wasn't sneaky...I snuck up on her! 

We went back upstairs after seeing PawPaw off to have her port dressing changed.  Normally, it doesn't have to be changed, just taken off once it's de-accessed.  Since the dressing was still the one from the surgery, her nurses changed it so it would be clean.  Since her counts are dropping and she will practically have no immune system, they wanted to take away anything that would cause infection.  Brittany from Child Life came in and distracted her with the Ipad while it was being done.  She did awesome and almost doesn't need Child Life as a distraction anymore, but she loves having them there.  Colleen came by to check on her.  No changes and they are happy with her progress.  She said Haylee should probably start wearing a mask when she leaves her room since her counts are almost at the point where she can't fight infections anymore.   

Brittany came to get Haylee around 4pm to do a 'tye-dye' project in the playroom with some of the other kids from the floor.  It wasn't your typical tye-dye.  They used sharpie markers and rubbing alcohol.  It worked really well!  She made a pillowcase since all the t-shirts were taken. 

After the tye-dying, we had dinner then went down to the garden and kicked the soccer ball around.  After a while, she just dribbled it around herself then went off in search of squirrels (she thinks she can catch one!).  We came back, had baths, skyped with Daddy and Mason, and watched 'Frenemies' on Disney.  We did (and do!) the best we could to stay busy.  Its like my dad said...time sort of slows down while we are here.

WBC - 2810

HGB - 12.3 (it actually went up 0.1 - maybe she won't have to have any transfusions this time around!)

Platelets - 228K

ANC - 1630

SEGs - 58