4/3-4/4/12 - Our first 24 hours

The clowns came to visit Wednesday morning!

Happy Go Lucky girl!



 

Her IV pole - the bag on the left is fluids, the bag in the middle with the pink sticker is chemo, and the polka dotted bag  on the right is her Beads of Courage :)



Haylee and Carrie down at The Voice doing trivia and singing songs

Haylee down at The Voice with Taylor the Miss Atlanta's Outstanding Teen winner

Monday, April 3

We were taken to our room around 5:30pm and all settled in by 7:00pm.  It turns out we are right next door to Carrie and her mom, who we have gotten to know over the course of time here.  She's only here until Friday so we'll be alone again but we have until then!  Carrie was a big help because she has a port (pictured below) and that's what Stacy mentioned they would probably want to try next with Haylee.



The insert picture is how it is accessed.  The big picture is what it looks like under the skin.

 The port has so much more flexibility; she can swim, take showers, doesn't have to have a line hanging out of her all the time (only when it's accessed), no more dressing changes, and a lower risk of infection.  The accessing is what scares Haylee - she's afraid of the needle and the pain that comes with it.  The would give her EMLA cream to numb it and she wouldn't feel the prick, just the pressure of pushing it in.  Carrie was honest with her and even showed it to her.  I think Haylee is going to like it better and is coming to terms with it.  Danielle (Child Life) is going to talk with her more and bring out the 'doll' in the upcoming days to help prepare her for what will eventually be to come. 
Haylee's triglycerides (cholestrol) were way high when they did her blood draw in clinic.  Because of that, her ATRA is being held until further notice.  They are putting her on a fast until 9am to test them again to see if they will come down enough on their own.  If not, they will have to give her a pill until it comes down.  Dr. Cooper has a call in to the Clinical Study Board to make sure they follow protocol. 
Haylee got her first 3 hour chemo treatment at 8:45pm.  They give her Kytril (anti-nausea) before hand to help in case of vomiting and nausea.  She also started an antibiotic to help prevent any bacterial infections.  I assume that's 10 days or until further notice.  Apparently, Cytatarabine can cause 'viral' conjunctivitis so they have also started her on every 6 hour eye drops.  Around day 8 or so, she will start an anti-fungal to help prevent fungal infections.  Whew!  That wears me out!

Tuesday, April 4

Haylee had a good night.  She was on fluids all night long so she was up and down.  Sometime during the night they woke her up to put the drops in her eyes and she didn't even whine about it (I must have been out!).  There was one time where she had air in the line and the alarm kept going off.  After what seemed like forever, the nurse finally came in and fixed it. 
Haylee was up around 7:45am, ready to go!  We had Laura (same as yesterday afternoon).  Haylee started her 2nd chemo treatment at 8:45am (after getting the Kytril) and so far has had no issues.  The clowns came by and made her laugh this morning.  She really does look forward to them.  Our favorite clown is out of the country at the moment but he should be back soon. 
Adam and Traci came to visit for a while today.  Adam was able to see Haylee for a while before she went down to school.  Traci stayed all day and kept us company.  Colleen and Dr. Olsen came in around 12:00pm to check her out and discuss upcoming plans and test results.  They are as follows:

1. Bone marrow results show she is STILL in remission :) :) :) :)

2. Her triglycerides came down drastically on their own so the ATRA starts back tonight at 8pm. 

3. After Colleen and Dr. Olsen saw what PICC line looked like, they worked it out to have her scheduled for port insertion on Friday before her counts make a big drop.

4. Since her urine output was good, Colleen let her go without the fluids for a while and didn't have to carry the pole down to school. 

I should find out tomorrow what time she's scheduled for the port insertion Friday.  She knows it's coming up and is doing fine with it.  I let her know that she will come out of surgery with it already accessed but the 2nd access she will be awake for and seems to understand and dealt with it.  Danielle popped in today and is going to swing by tomorrow sometime with the 'doll' and talk about the port with Haylee. 
After school Haylee, Traci, and I went downstairs to the Spring Craft Party.  Haylee didn't wanna go but I made her in case she starts feeling bad and doesn't want to leave the room for a while.  Carrie and her mom ended up showing up just to get out.  Miss Atlanta's Outstanding Teen (Taylor) came by and said they were giving away free books at The Voice so we all headed over there to see what was going on.  There was a guy there playing guitar and singing songs.  They were also doing different trivia categories.  Eventually, it was just Haylee and Carrie answering questions from a fish bowl.  I think they had a good time. 
Haylee got her ATRA and antibiotic around 8pm then her 3rd chemo around 8:45pm.  She passed out around 10:45pm.  She hasn't had any side effects yet, but Laura said maybe during the night or the morning.  Haylee was complaining earlier about her shoulder being sore.  She was propped up on it some in her bed today so maybe that's why?  Otherwide, she has still been feeling great :)

I'll post how her night went...fingers crossed nothing during the night!