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

4/8/12 - Happy Easter Weekend!

About to begin the Easter Egg Hunt

Happy Easter from Haylee and the Easter Bunny!

Getting as many eggs as she can

Thanks to the Darnall Family and all the 1st, 2nd, and 3rd grade students from your school :)

Sitting pretty with Dave the Duck...a playmate for Big Bertha!

Mason and Haylee playing in the garden

Saturday, April 7

Nonna spent the weekend with Haylee so that I could go home and spend time with Mason and Adam for a few days. 

Haylee slept until 9:30am.  She had a good night, just up and down having to go to the bathroom.  Guess that made her really tired!  After she had breakfast and got up and around, she wanted to go to the garden. 

Her and Nonna were walking around and who did they run into?....Dr. Smartypants, the clown!  Him and another clown friend played Hide-n-Seek with Haylee in the garden.  They had to leave after a while, but invited Haylee and Nonna to go in the lobby and play cards with them.  They played 'WAR' and Nonna won! 
Back in the room, Haylee was bored :(  She played 'Angry Birds' on Nonna's tablet until it was blue chemo time.  After dinner, they went back to the garden.  There was a boy and his mom kicking a soccer ball back and forth.  Haylee wanted to play but only had flip flops so they just watched.  Haylee ended up texting me from Nonna's phone asking for her soccer ball and tennis shoes :)

Haylee's triglyercides are still high but not nearly as high as they were less than a week ago.  The doctors have ordered daily CBC checks to start watching counts.  Saturday's counts were:

WBC - 5570
HGB - 13.1
Platelets - 332K
ANC - 4710
SEGs - 84.6

Beautiful counts!!


Sunday, April 8

I came back to the hospital today with Mason and Adam so they could see Haylee for Easter.  We didn't make it down in time for the Easter egg hunt in the garden but Nonna took a few pictures for me :) 
Mason hasn't seen Haylee since we dropped him off at daycare last Tuesday.  We get on Skype every night with Adam and Mason but it's just not the same (plus, our connection isn't always the greatest).  It was Mason's first time ever going up to her room since there was visitor restrictions in place before.  He carried Dave the Duck up to Haylee's room...Dave is as big as he is! Dave was a gift from one of Adam's co-workers...THANK YOU!  Dave was a big hit throughout the hospital and with one of the nurses who LOVES ducks!  Mason did so good being up on the floor :)  I wasn't sure how he was going to act being around all the equipment and all, but he was sooo good!  He just played, as if we were at home. 
Everyone was getting ready to leave so we all took Haylee and Mason down to the garden so they could play with ball and velcro mitt set together.  They played well together.  I think they miss each other more than they lead on!
After they left, Haylee and I kicked her soccer ball around the garden (I remembered to bring the ball and tennis shoes like she asked).  She misses being able to play soccer.  As long as she's feeling up to it, we'll go down everyday if she wants.  It's nice being outside and it's good practice and exercise for her.  We headed back upstairs for dinner and we just hung out in the room for the rest of the night.  Haylee and I are on hospital time - and it totally stinks!  There is no schedule and as much as I try to keep us on one, something messes it up somehow (meds, chemo, vitals...)

Haylee's counts for Sunday show they are dropping as they should be.  It won't be long now and she will be required to wear a mask when she leaves her room.  If they have already started dropping 5 days into our stay, I can only HOPE they will recover that fast so we can go home for a little bit before her next admission!

WBC - 4520 (down a thousand from 4/7)
HGB - 12.2 (down 0.9 from 4/7)
Platelets - 293K (down 39K from 4/7)
ANC - 2940 (down 1770 from 4/7 - anything under
SEGs - 67

A special thanks to The Darnall Family in Illinois - They and the 1st, 2nd, and 3rd graders of the school where Michelle works sent Haylee a care package with goodies, get well cards, shamrocks (made in March but we can always use a little luck!), 'reasons to smile' stories, and a letter telling about everything in the box.  Today, Haylee and I read every get well card, every 'reason to smile' story, and every shamrock that was made for her.  We cannot say 'thank you' enough for showing Haylee people everywhere, near and far, are cheering her on to fight and win her battle and she's doing just that...fighting and winning!!  Words can't describe how proud we are of her :)
 

We continue to appreciate all the love, support, thoughts and prayers from everyone, everywhere. 

4/6/12 - Port placement day!

Another great night!  Haylee slept good and only got up once.  The nurses had to come in at 6am and administer eye drops and she handled it pretty well.  It kept her up for a bit then she went back to sleep.  I had to wake her up around 9am.
Dr. Ricketts, the surgeon performing her port placement, stopped by around 8:30 this morning to go over the surgery with me.  He said he was going to have them hold her chemo and get the port placed this morning.  I was thankful for that so that she didn't have to go all day without eating. 
Her nurse came by around 9:30 and gave her some Versed to make her loopy before surgery.  She went down to surgery around 10:30 and they called me around 11 to let me know she was still in surgery but doing well.  Adam showed up shortly after that to sit with me and, hopefully, to see Haylee awake before he had to go back to work.  Dr. Ricketts met us in a consult room after surgery to let us know that she did great and they had to place the port on the side where she had the CVL because they couldn't get the port line into the correct vein on her right side.  He thought it was probably because she still had the PICC line in her arm.  They weren't going to take it out without making sure the port was placed correctly and worked.  The recovery nurse brought her back up to us around 12:30pm and she was pretty much awake when she got back...a little sleepy though.  By the time Adam left, she was awake and drinking apple juice.  She ate a bagel about an hour later and was feeling pretty good.  After she woke up really good, we went to the library and checked her out a movie to watch.  Her nurse came in right after we came back and hooked up her last Cytarabine chemo for this round!  She begins the Mitoxantrone (also known as "Smurf Chemo") as soon as the Cytarabine is done.  She will get it again tomorrow evening as well and be FINISHED with chemo for this round! 
Colleen came by and checked on her and said her counts looked good still.  Nothing new from her except she looked good after surgery and as long as she kept drinking on her own, she could stay unhooked except during chemo treatments and infusions until further notice :)  Haylee's pretty happy about that!! 

Nonna is with Haylee for the weekend so I will update everyone on Sunday when I get back!  Have a great weekend and Happy Easter!! 

4/5/12 - Another great day and Easter Bingo!

Danielle from Child Life explaining how a port works with "Lee the Port Doll"



Haylee listening to Danielle with "Lee"



"Easter" BINGO!



Yea, I played along too...!

Haylee had another great night - still no side effects so far!  She was able to sleep in a little this morning.  Chemo was hooked up around 9am...a long 3 hours!  She can't leave the floor with the chemo so she's confined to her room and the playroom.  Guess where she chooses to spend her time!!  We hung out in there this morning for a while.  Adam came to visit and played Mario Kart with her for a while.  Danielle from Child Life came by to get her updated on her Beads of Courage.  We are updated most of the way through this consolidation.  We will still have a few beads to collect.  Haylee's up to 3 strands now!  Whoever came up with Beads of Courage had a great idea.  It's such a good way to show the kids their accomplishments.
After chemo, she went down to school for a little over an hour.  She's getting good time in right now since she's feeling good.  Her port surgery is tomorrow so I'm allowing her to skip school - haha!  She will be under anesthesia so I imagine that's a good reason!!  The surgeons stopped by over the course of the day and went over with me how port insertion works.  I'm feeling good about it and she will be much better off with the port.  Colleen stopped by after rounds and said she could be off fluids between chemo treatments as long as she continued to drink on her own.  Haylee was excited about that!  The Mitoxantrone chemo starts tomorrow after the last Cytarabine dose (around 12pm) and it runs for about 15 minutes.  She will get that one time tomorrow and Saturday then be done with chemo for this go round.  The Mitoxantrone is blue and could make her pee green and the whites of her eyes a bluish-green color for a few days after.  Our night nurse, Brit, said the older kids think it's cool to have blue-green eyes and pee!  Guess I'll have to have Nonna take pictures if she notices the color changing - haha! 
We went downstairs with Carrie and her mom so the girls could play at The Voice.  They were playing games and doing trivia.  Bingo started at 6pm and the girls were excited about that.  It was Easter themed.  Haylee wanted so bad to win a specialty Easter basket but her numbers weren't called fast enough.  She won some grow tablets, a word search book for me, and Jenga for us to play.  Haylee had her eye on Jenga as soon as it came out of the box! 
CURE provided food for the AFLAC families tonight (and every Thursday) as a way to help out and be supportive.  Haylee and I ate some really good pizza, salad, and cookies.  We relaxed the rest of the night and she went to bed around 10pm. 

Brit was telling me that sometimes kids don't get sick from the first round of Cytarabine - it's usually after the 2nd or 3rd time.  The biggest thing to expect from the Mitoxantrone is the bluish-green eyes and pee!  I'm not sure what time her surgery will be but her NPO orders (nothing by mouth) are in effect as of midnight and will stay in effect until further notice.  If her surgery is going to be too late, the orders will be changed.  They could get her in before her 9am chemo but I highly doubt it.  I should know for sure in the morning.  Either way, she's going to do GREAT!!!

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!

3/31-4/2/12 - Family Trip to Helen!

Lake Unicoi

Riding Daddy's shoulders around Lake Unicoi 

Last deck on the Lake Loop Trail



The new Babyland General

The birth of twins - Savannah and Bob (hey, the group of kids picked the names!)



Haylee, Mason, and I at the bottom of Dukes Creek Falls



We headed to Helen for a long weekend.  It'll be our last excursion as a family for a while.  We got to the cabin Saturday afternoon.  It was a nice 2 bedroom with a hot tub in Unicoi State Park.  After we got settled in, we went back into town and played mini golf.  Mason was done playing by the 13th hole, but we finished it out.  Afterwards, we went for ice cream at the parlor next door.  We headed back to the cabin for dinner - Adam grilled hamburgers and hotdogs.  We drove up to Anna Ruby Falls only to find out the park for that closes at 5 so we went back to the 'beach area' at Unicoi Lake and walked the Lake Loop Trail that eventually took us back out to the main road.  We finished up the trail (it was about 2 miles) and went back to the cabin.  The kids were exhausted so they got baths and went to bed!

Sunday, we got up early and drove into Cleveland for breakfast.  We went to Ma Gooch's and it was really good!!  After breakfast, we went to Babyland General (Adam was super excited!  Haha!).  We got there just in time to see a delivery of twins, a girl and a boy.  Haylee and I enjoyed ourselves, but Adam and Mason were ready to go before we got there (haha!).  Mason ended up bringing home a Hobby Horse that he named 'Galahad' and Haylee adopted a baby named Trista Bridget.  We drove back into Helen and went to see the bears and snakes at Black Bear Forest.  We fed the bears that were awake but mainly fed the grizzly bear.  He would sit up and wait for us to drop food.  We went into the reptile exhibits and looked at all the snakes, scorpions, and tarantulas.  Some of them were even for sale.  When we walked in, there was a guy holidng one he was interested in buying.  He offered Mason to pet it and he said no!  I really thought he would.  They had some rattlesnakes caged up, too.  Those were creepy!  We parked a little closer to town by the river and walked around.  We shopped at a few of the stores, but mainly people watched and enjoyed Helen.  We headed back to the cabin and relaxed for a couple of hours then headed back to Helen for dinner.  We ate riverside at Cafe International.  They had really good food and the kids enjoyed being able to watch the river as they ate.  We took a spontaneous trip a little farther north to find Dukes Creek Falls.  Haylee and I weren't prepared in our walking attire - she had on flip flops and I had on sandals.  Adam and Mason had on Converse so they weren't much better!  We had to walk a mile on a gravel path down a mountain (and the path would get more narrow as it went down) to get to the falls.  Once we got to the observation decks, the temperature dropped about 15 degrees and it was beautiful!!  Adam carved all 4 of our initials into the wood there to make our mark (haha!).  On the way back up, we noticed a trail off to the side that if we climbed up would take us back to the higher part of the trail (and cut off about a 1/4 mile of our walk).  So we decide to free climb up the side of the mountain about 100 feet in flip flops, sandals, and Converse (and Mason rode on Adam's back most of the way but he did his own share of climbing).  We had such a good time!!!  We were exhausted again and hit the sack early!

Monday was our day to leave :(  We had a great time all hanging out and spending time together.  Haylee and Mason had a blast and loved every minute of it!  Haylee got a headache on Saturday morning but once I got some food and Tylenol in her, she was fine the rest of the day.  She was never affected by the chemo injection and we were so grateful for that!!

We are back inpatient tomorrow at 2:30pm.  Haylee won't start chemo until they get her in a room but since we aren't checking in until the afternoon, we shouldn't have to wait too long.  Wish us luck and I'll keep everyone posted!  Have a great rest of your Monday :) 

3/30/12 - BMA and 1st Chemo injection

Haylee was scheduled for her quarterly bone marrow aspiration this morning.  She had to be at the cardiac center at 9am for an EKG and Echo just to make sure she's handled everything well so far.  We got into the procedure room around 10:30.  I met with the procedure nurses, Stacy (one of the PA's), and the anethesiologist handling her Propofol and Fentynal.  I asked the anethesiologist if it was possible to give her the Propofol a little faster so to avoid the whining she does when it starts.  He said it was something he could do but would have to put her on oxygen for the procedure and asked if I was okay with that.  I told him I was fine with it. 
Stacy came in to let me know they were going to go ahead and administer her first round of IT chemo (into her spine) along with the bone marrow aspiration so they didn't have to put her under twice.  I was fine with it once I found out it wasn't going to affect her since we are planned to go out of town tomorrow. 
Lindsay came to hang out with Haylee and gave her a present from her friend Kayson (a bookbag to color on) and also to keep her mind off of what was happening around her.  They began to administer the Fentynal and Haylee immediately became loopy.  When they started the Propofol, she immediately threw her hands up to her ears, scrunched up her face, then went limp noodle.  I stepped across the hall while the procedure was being performed and within 10 minutes, she was done.  They went ahead and changed her dressing on her PICC while she was still under.  She started to wake up and she woke up ANGRY!!  She only yelled at me once :)  She ate some goldfish, played on Lindsay's Ipad, and then we left.  We were back in town by 1:30.  It went so fast and she did GREAT!! 
We're headed to Helen for a long weekend tomorrow for some much needed fun and family time before Tuesday :)