1/13/12 - Friday!

Another good day at clinic!  Super fast again today...Maggie and the pharmacy were on their games again!  Started at 10:50am and out by 1pm!  They don't offer school on Fridays in the clinic but she was able to get The rest of her school work done while we were there and still have time to play the Wii. 
The clowns were there when we arrived at clinic.  Dr. Pucci was there again and he was making the entire waiting room laugh.  Although some kids and adults are scared of clowns, they really are a good way to make everyone forget their troubles for a while. 
Her line dressing is still itchy.  I was told to try Zyrtec, Claritin, or Zantac to help with the itching during the day so she's not sleepy so I need to get some of that!  It's really bad at night and the Benadryl and hydrocortizone just doesn't help enough.  It makes for somewhat rough nights. 

1/12/12 - It all fell into place

What a better day!  We only circled for about 5 minutes looking for a spot today!  We were 5 minutes early, waited about 5 minutes for reception to call us back for infusion, the pharmacy was on their game making all the medications, and Maggie hooked us up at 10:50am on the nose.  Haylee got an hours worth of school work in today and I got some work done for Cyndi and Tammi :).  We were outta there at 1pm!  The quickest EVER!!  The only thing bad I can say for the day is that we sat in traffic this morning from Plesant Hill to 285 then it started backing up again just before Clairmont so we jumped off there and rode it in.  Somehow we made it on time! 
I had to change Haylee's dressing and line caps today.  I was nervous because 1) it's just nerve-wracking to do since you have to stay as sterile as possible and I second guess everything I do all the time and 2) she was just getting to the point where it wasn't itching or irritating her and here I go and mess with it.  She was doing so good with the rash that she didn't even need Benadryl last night for the first time in a week.  By the time I got most of the dressing off is when she complained that it hurt a little.  I was waiting for the screaming and complaining when I started cleaning the site with the Chloraprep solution but she just laid there and watched TV without a peep!  I was so proud of her...she did AWESOME!!!  The best yet!  Line cap changes went off without a hitch, although that still makes me nervous...everytime.  I mean, it's a direct line to her heart and the smallest bit of bacteria can send us back to the hospital.  I keep a very close eye on her for about 24 hours after I change her dressings and caps.  It bugs her because I'm constantly asking her if she's feeling alright or if she feels any different and checking her for fever.  I'm a nervous mommy, what can I say!?  Since she has an immune system now, she can fight that stuff off better and that helps ease my mind some. 

1/11/12 - Same ol, same ol...

Aside from the fact that we had to circle 4 levels of the parking deck for 20 minutes before we found a parking spot...Haylee had a great treatment day!  The constant circling set my mood for the day, however.  We were 25 minutes late for our appointment, which was at 10:30am.  Every minute counts!  According to our nurse, Maggie, the pharmacy was backed up making chemo medications so Haylee didn't officially get started with her treatment until 11:45am (and that made Maggie MAD!  She says she's not a patient person and thought Haylee and I were great for being so patient). 
She went to school for about 30 minutes today.  I'm not sure how all this works with the hospital and homebound services.  They are required between the both of them to make sure she has a minimum of 3 hours a week with a teacher.  I just feel like she isn't getting enough time with a teacher during the week.  I mean, 3 hours a week just doesn't seem adequate enough when she was getting 6 hours a day before!  I'm not expecting her to get 6 hours a day but more than 3 hours a week, for sure.  She's behind on her multiplication tables.  I do what I can with her but it doesn't count towards her attendance and, let's face it, I'm no teacher!! 
Mrs. Deal, her homebound teacher, came today to help her with her Math lessons and brought her assignments for next week.  She's got plenty to keep her busy.  I just hope she continues to understand everything even though she's not in the classroom. 

1/10/12 - Getting into the swing of things

Laughing at the clowns

He was trying to read upside down and not doing a good job!

Haylee had another good day at clinic today...no issues!  Her rash is getting better.  Dr. Keller told us to get some hydrocortizone cream to help with the parts that are spreading and itching.  When we got to clinic today, a couple of clowns were making their way through the clinic and infusion side to visit the kids.  'Dr. Pooby' found his way to Haylee while she was getting started with some of her school work and tried to 'help' her.  He would get really silly when I took their picture (hence the top picture of her laughing so hard).  He was making me laugh, too.  I think its great they take the time to visit all the kids and help brighten up their days. 
After she got hooked up to her arsenic, she spent some time with the clinic school teachers and got all of her Language Arts work done.  Now all she has left for this week is Math and Social Studies.  While she was at school, I got some phone calls out of the way and watched re-runs of Storage Wars.  We're getting into a routine and most of the nurses know us by now. 
We saw Savannah, the other girl that has APL, today.  She has began the Maintenance phase.  Her mom told us that she is in complete molecular remission!!!  How exciting!!!  Savannah looked great and we are so happy for her and her family!  :)
Haylee met Mrs. Deal, her H/H teacher, today after clinic.  Haylee is so friendly to everyone all the time so naturally she was a chatterbox!  She was able to go over her Math verbally and learn how to make a timeline for Social Studies so that she will be caught up for this week.  She will have another visit from Mrs. Deal tomorrow and hopefully she will finish all of her work a day early!  She's a whiz at Math, which she got from her Daddy, but the Social Studies will be a little tricky because she has to make a timeline for 3 different people all on the same line.  Sounds easy to us, but she was a little confused by it.  Mrs. Deal was able to teach her a way that she understood.  She finished up some last minute work and called it a night!

My mom got a tattoo of the leukemia ribbon and it looks great!  When I get a picture, I'll post it.

 "HOPE FOR HAYLEE", always :)

1/9/12 - Monday Funday!

We were at clinic allllll day.  At least we're not inpatient for the time being but clinic days are sooooo long!  Haylee had her EKG this morning which looked great!  All of her counts and chemistry blood work came back looking good as well.  Dr. Keller came in and said she was looking great and gave her the OK to return to school the 2 weeks she's in between arsenic treatment sessions.  She was excited to hear that!  I'll be a nervous wreck when that happens.  Dr. Keller also said because her blood pressure has been good for a while, she could quit taking the blood pressure pill!  Yay, 1 less pill to take!!
I made her do schoolwork when she was doing her 2 hours of infusion and she was mad at me.  She acted like she hadn't got to do anything she wanted to do today.  I let her play her DS and watch TV while she waited to get her EKG and the entire time before infusion time (4 1/2 hours!) and she wanted to give me a hard time about 2 hours worth of school work.  I told her she could just be mad and do the work or repeat 3rd grade...she did the work :)
Haylee is supposed to meet with the H/H teacher tomorrow afternoon.  Maybe she will do better with her!  I'm sure she will cause she will make sure she works and doesn't mess around.  I'm the Mom, so she figures she can 'play' me but it doesn't work and she doesn't like it!  Haha!

WBC - 7220
HGB - 11.5
Platelets - 372,000
ANC - 4120

1/8/12 - That's what I love about Sundays...

What a dreary day!!  The good news is that there is nothing new to report :)  Haylee is still doing awesome, feeling great, and back to herself!! 
I met up with some good friends (Stephanie B, Desiree, and Ivy!!) at Dos Copas last night to have a few drinks and listen to some music from my favorite local band, Full Frontal.  Love them!  Next time Stephanie is in town, we're gonna get the kids together so they can play. 
We grocery shopped and pretty much lounged around all day after that.  Our PJ's were on by 4:30pm!  We saw one of Haylee's friends, Gabby, and her family at the grocery store.  Haylee was so happy to see her!  She could actually hug her this time since last time they saw each other Haylee's counts were still down and I was nervous about them getting too close. 

Have a great rest of your Sunday!  Back to clinic tomorrow for EKG and infusion.

1/7/12 - Clinic on a Saturday

Because of Monday being a holiday for the clinic staff and they weren't open, we had to do clinic today on the inpatient floor of the hospital and had to be admitted for our time there.  We were there at 8am but didn't start infusion until 10am.  They aren't as fast as the clinic (and they said they wouldn't be).  It was the longest morning but I did doze in and out on their "couch" they have in the rooms.  I don't miss sleeping there!  Haylee watched TV, played her DS, and played in the playroom.  We went down to the cafeteria around 12pm for lunch while her infusion finished.  By the time we were done with lunch, she was done with her infusion and we were discharged and ready to go home.  We were home by 1:30pm.  We start Monday - Friday clinic next week but will have to do Tuesday - Saturday again the week of the MLK holiday since clinic closes for that day as well.   
I changed her dressing to a different one that Maggie (one of the clinic nurses) gave us that helps with sensitive skin and it seems to be working!  She's not scratching hardly at all and if she does, she doesn't cry about it and giving Benadryl helps, where it was barely helping before.  I'm so glad too cause I felt so bad that there was nothing I could do to help her except tell her to stop scratching and to her, that wasn't helping! But it seems to be working and we're so glad!!