12/30/11 - A day of visiting with great people

Today, we went to my dad's work to bring Haylee by to say 'thank you' for everything they have done for her and us since her diagnosis.  She was really shy with everyone at first but eventually opened up to Stuart, a guy my dad works with, during the visit.  She didn't know what to do with all the attention given to her.  Usually, she's an attention hog but not today!  She met a few of the guys that cut their hair for her, too.  They gave her a hard time about telling my dad not to cut his hair (and PawPaw was thankful!).  She thought it was funny :)
We went to lunch at The Collegiate Grill in Gainesville (yum!!).  Everyone there was super nice to her and she had the best chocolate milkshake ever!  (Thanks to The Collegiate crew!)
After lunch, we went by my mom's bank to thank them as well.  She wasn't as shy with them but I guess that was because she had been showed around to everyone at dad's work.  At least she didn't hide her face with the girls at the Gainesville Branch like she did at my dad's work! 
We went to Old Navy and shopped around for a bit...new jeans, a few new shirts, and a purse she wanted.  It's blue crushed velvet, go figure!  (Her favorite color is blue.)
We came home and she played with Savannah for a while.  That's pretty much what she looks forward to everyday.  I didn't make her do any school work today since they usually have no homework on Fridays!
Adam and I went to get tattoos of Leukemia ribbons tonight but the wait was too long so it'll have to be tomorrow! 

12/29/11 - Being a school teacher? Not for me.

Haylee and I ran around town on some errands....Ross, Hobby Lobby, Kohls - you know, errands!  She amazes me because once we get into a store, she doesn't want to wear her hat and almost immediately takes it off.  I love that she's got a 'whatever' attitude about her hair loss.  Me, on the other hand, not so much.  I would be too self conscious to go without a hat.  That's just me though!  When we were in Kohls today there was a boy, a little younger than her, that made a comment about her hair.  Neither of us knew what he said but Haylee said, "I think he was talking about me."  I said, "What did he say?"  She said, "I don't know but I think he said something about my hair."  I said, "Does it bother you?"  She said, "No."  Then I made her laugh by asking if I needed to go kick him for it.  She said no about that, too.  (Hehe!)

I told Haylee since she was behind on her schoolwork that she could play with Savannah today if she did work before and after their playtime.  She agreed but she is so easily distracted that if I were her teacher, I would go INSANE!  I literally sat with her at the table for over an hour while she finished everything just to keep her focused.  I'm sure being in a school setting is much easier because everyone else is working too and there's not little brothers, dogs, and TV around...but still, I would go crazy trying to keep her focused.  Props to her teacher, Mrs. Williams, for keeping her focused! 

It was Line Cap Change Day so naturally, I was nervous and still am!  I'll be watching her like a hawk for the next 24-36 hours.  She hates it but it still scares me how easy it was for her lines to be infected.  I'm sure she'll be fine, but I'll be watching anyway!!

12/28/11 - So this is what it's like to go to clinic...

We had our first day of clinic today.  We got started down there at 7:30am when we registered for her EKG/Echocardiogram.  I sat in the room while the sonographer did the Echo and it was really neat to see the different pictures of the heart.  She's had one done before but she was in the PICU and I wasn't all there at that time.  Her Echo came back normal :)
We were 1 1/2 hours early for her clinic appointment but they had a cancellation and was able to squeeze us in.  They drew blood labs and did a physical exam before her bone marrow aspiration.  Her counts are looking great and her physical was good, too. 
Her aspiration was a little comical.  She was given Fentanyl first for pain (so she didn't jump during the procedure and it lasts 2 hours afterwards to help with pain) and was sedated (not general anesthesia like before) with Propofol.  The doctor giving her the meds said that the Fentanyl would make her feel good and a little woozy (which it did) and work within a few minutes and the Propofol would make her sleep and work within seconds (which it did).  When the doctor started administering the Propofol, Haylee said "I feel woo..." and she was out!!  I was giggling.  They seriously meant SECONDS!  I should have the results back between a few days and 10 days. 
My mom and I went and met up with one of the mom's from the Aflac floor that we got to know (she has APL, too).  It was nice to see her again, even though I was hoping we wouldn't see her today.  They may get to go home Saturday and I'm praying they do!!!!
Haylee was done with the aspiration within a few minutes and was awake with Lindsay, a Child Life Specialist, collecting some beads for her Beads of Courage necklace and eating goldfish.  We were able to leave about 10 minutes later. 

We got home and the rest of the night was cool, calm, and collected (maybe not necessarily calm, but uneventful nonetheless)!

WBC - 4090 (almost low-end normal!!!)
Platelets - 521,000 (high but normal since her bone marrow is flushing out more platelets)
HGB - 11.3
ANC (combination of SEGs and Monocytes) - 1270 (almost low-end normal!!!)

12/27/11 - Rainy days and good friends :)

It was a rainy and cold day so Haylee and I slept in, although I got up before she did and did some housework.  Once we both got up and around we went to the grocery store, which I haven't done in over a month!  It was well needed - our food supply was running out.  Haylee was a chatterbox the entire time at Kroger.  Finally, I had to tell her to "shush" and that she talked to much.  Haha!  I made her wear her mask for the first half of the trip but allowed her to take it off since the store wasn't busy. 
Adam took her to Gamestop and let her spend her giftcard she got for Christmas and trade in a few of her games.  She was so excited cause she was able to get 2 games she wanted and still had trade-in left.  Our next door neighbor is Haylee's best friend (Savannah) and her mom called to see if the girls could play.  Haylee was so excited when I agreed.  She had not seen or talked to Savannah in over a month.  She was missing Savannah!  They both had to wear masks since they would be in close quarters with each other and neither of them minded (they were just happy to see each other, I think!). 
My friend, Ashley, came by for a visit and to see the kids since she's visiting from Arizona.  It was so great to see her and catch up.  I'll be so glad when she comes back in May. 
Haylee hasn't been sleeping soundly for the past few nights.  Last night, she didn't fall asleep until after 11pm and kicked Adam out of our bed as well.  Tonight, she didn't fall asleep until between 10:30-11pm.  I don't know what's going on with her!! 

Clinic appointment in the AM!

12/26/11 - Christmas Part 2

Since the last Vancomycin hook up was last night/this morning, Haylee and I got to sleep uninterrupted!  And it was nice....!  She's been doing super great today!  She's still got tons and tons of 'tude...and I'm soooo over it! 
We went out and about and returned some things from Christmas.  The kids got a few multiple items - we used the gift cards and let them pick out other things that they wanted.  It was like Christmas all over again - boxes covering the dining room table, kids yelling at each other to leave their stuff alone, etc.  It was irritatingly blissful!
It's been a rather boring day (aside from venturing out to the Mall area...what were we thinking!?) and I love it!  I'd rather be bored and at home than bored and in the hospital!

Merry Christmas to ALL!!

Adam, Mason, and I woke up at 7:45am to Haylee already in the living room checking out her Santa stuff.  I asked her what time she got up and she said "6:12am".  She was ready for Christmas!  They got a ton stuff!  They weren't wanting for anything, that's for sure!  It literally looked like Christmas threw up in our living room. 
My parents came over with Waffle House for breakfast (yum!).  Presents were opened for about an hour or more and then it took Adam and I until 3pm to open, sort, and put everything away in their rooms.  Whew!  Christmas dinner was at my parents - I've ate so much in the past few days to feed an army!  Not really, but it feels that way!
Haylee has been doing so great with everything.  She's been taking her pills (even with me waking her up - no fussing!), carrying around the antibiotic bottle, and going to bed like a champ.  I'm so glad everything worked out for her to be home for Christmas.  She's been feeling great (she gets tired of me asking her if she's feeling OK).  She told me tonight that she was tired but with her being up early and all the excitement, we all need to go to bed early!  We had a great day with them :)

A special thanks to EVERYONE who helped out with their Christmas, whether it was shopping, wrapping, giving ideas, or setting everything up....words are not enough to say how thankful we are for everyone and everything.  It's been a very trying time in our lives over the past month and without all the wonderful people in our lives, both near and far, supporting and loving us like you do, we would be lost.  Thank you again from the bottom of my heart :)

The best present I had was spending Christmas at home with my BOTH of my babies :)

12/24/11 - Christmas Eve!

I'll be so glad when the Vancomycin is done!  I'm so tired!  Tomorrow is the last day of it and then, I'm sleeping in on Monday!!! Mason was looking shaggy so I took him to have his hair cut before Donna, the home health nurse, arrived to help me with Haylee's line dressing change.  It has to be changed once a week.  I was taught in the hospital using their supplies and I know the general idea and safety precautions but I wanted a nurse to come by and watch me in case I screwed something up (or before I got to that point!).  She said I did great :)  That made me feel good, like I really CAN do this!  Haylee did awesome keeping herself under control while I did it.  She always screams when I take the dressing off but for some reason, this time didn't hurt her.  She has sensitive skin so the Chloraprep chemical used to clean the area irritates her skin and it burns.  Donna gave me a different kind of dressing to use specially for sensitive skin.   In the mean time, she put an icepack on the site and dealt with it.  Big girl :)
We went to my parents house for Christmas Eve dinner - Pizza Hut!  We opened presents from my parents at their house.   They were so excited opening everything.  Mason is at that age where he's super excited about every present he opens and Haylee is at the age where that excitement is gone.  All we get is a smile from her. 
When we got home, Adam re-shaved Haylee's hair.  The Child Life Specialist that cut it at the hospital did the best she could, but she wasn't a beautician.  She had some uneven spots so we figured it would be easier to fix it so it could grow in right.  After the haircut and baths, Haylee wrote her and Mason's letter to Santa while Mason and I set out Santa's munchies - meat lover's pizza, chocolate chip cookies, and milk.  Yummy!!

12/23/11 - Happy Christmas Eve Eve!

Haylee was up and ready to go at 7:15am.  Guess it helped her going to bed at 9pm and she actually got good sleep.  I, on the other hand, was totally worn out this morning.  I got up and hooked Haylee up to her Vanc at 8am but then dozed on the couch until around 10am.  I only have 2 1/2 more days of this and she's done with the antibiotics.  Whew! 
We went to lunch with my good friend and co-worker, Tammi, today at Dos Copas.  It was so good catching up with her and letting her and Haylee visit.  I've missed her!  Haylee ate 2 tacos and a chocolate molten cake :)  Some of her appetite is still the same.  I guess chocolate is good with everyone (well, most people!).  A parent of one of Haylee's friends surprised us by buying all 3 of our lunches for Christmas.  Thank you, Jessica!!
During lunch, it came out that we were getting rid of our dog, Abby.  Haylee was not happy about that.  Tammi and I were having to try and explain to her that its best if we don't have her around with her germs and the fact that Abby could hurt her when she's just wanting to play.  She came around but I'm glad we got that out of the way.
My dad told me yesterday that 19 of the guys he works with shaved their heads to help raise money for Haylee.  Thank you, thank you guys!  Rock those bald heads!!  No one does it better than my Haylee Bug, though I'm sure you all look great anyway!

12/22/11 - She hasn't lost her attitude!

Another long night, but Haylee slept well (once she went to bed after midnight!).  She was awake because her and I have no schedule in place except when she gets meds.  She gave me tons of attitude and I told her she's back to 9pm bedtime tonight.  Once I hooked her up at 12am, I told her if she was still awake when I went in to flush her lines that she would be grounded!  She was snoring at 2am :)  I woke her up for her AM pills around 7:45am and she stayed up (cause I told her she had to).  I had to change her line caps today...I was super nervous because last time I changed her caps she ended up with a fever the next day so needless to say, I'm watching her like a hawk! 
Kim came over today to visit with us.  She wrote the kids Santa letter for me so I don't have to worry about it.  Haylee was in a really good mood.  Her and Kim's relationship is like an aunt and niece.  Kim spoils her, plays with her, and jokes with her.  She was still full of attitude and that's the way Haylee is from time to time.  Is it cause she's a girl or because she's 8?  Maybe both?? 
We picked up Mason from school and I told Haylee she could come inside as long as she kept her mask on and sat in Ms. Cyndi's office. Cyndi spoiled her with chocolate!  What Cyndi doesn't realize is that she's made a new friend in Haylee because of it :)  She saw some of her friends there but I told them they could wave but no hugs.  I gotta keep an invisible bubble around her.  She understands and is ok with it.  She took a letter she wrote and a mask to our next door neighbor's house (her BFF, Savannah) so that when they get to play, Savannah has her own mask like Haylee's.  She's super excited for next week when she can play with her!!
Mason is all jacked up because it's Christmas and he's showing his little butt big time!  Him and Haylee fought for about the first hour after we came home...ah, sibling love.  I think I've missed it :)
Haylee ate really good at dinner unlike Mason.  Mason's problem is his age, Haylee's is her tastes have changed.  I'll take what I can get from both of them. 

It's been a pretty uneventful day and I'm just fine with that :)

12/21/11 - Ah, a lazy day.

What a night!  Giving Haylee IV meds every 8 hours is exhausting for me!  She had meds at 11:30pm then I had to unhook her, flush and hep lock her after 2am.  Adam's alarm clock went off at 6am for him to go to work, then I had to get up at 7:30am (which turned into around 7:45am) to give her daily pills along with a Benadryl and was supposed to wake back up and hook her up at 8:15am but that turned into about 8:50am.  Whew!  Just exhausting, but necessary.  Haylee slept right through everything except taking her pills.  She went back to sleep in my bed once she was done with that. 
A friend of mine stopped by this morning just to see us.  She got to see Haylee (when she finally woke up at 10:30am) and just visited for a while.  Adult conversation is great!!  After she left, Haylee and I pretty much did nothing.  And I do mean nothing...and it was awesome! 
Adam came home and we decided to go to Walmart to grab a few things and just get Haylee out of the house for a bit.  We made her wear her mask and she didn't complain about it.  She had on a hat and mid-way through our trip she asked if she could take her hat off.  I told her she could but didn't think she wanted to in case it embarrassed her a little.  She said she didn't care!!!  She didn't care if people stared or anything!!  She just went along like it was nothing and we treated her as such.  I was SOOO proud of her!  She's been such a trooper about everything! 

12/20/11 - Home Bound AGAIN!

Haylee had another good night!  She slept all night again.  The only thing is that she gets Benadryl at 4pm for her Vancomycin and then she sleeps until 6 or 7pm so when bedtime rolls around, she's not sleepy!  She is up until the 12am dose is due then sleeps all night.  Bad thing for her is when we go home, she will have to take the Benadryl by mouth instead of IV and she will have to start waking up for that along with her pills!  Guess I'll buy her an alarm clock so that's what is waking her up, making her grumpy and not me!
Dr. Cooper came in and said we will get to go home today (I won't get to meet Luke Bryan tomorrow but we're going home and I'm thrilled)!  Her counts are relatively good but her ANC is not where it needs to be.  She looks good, acts great, is eating and drinking...he said the main thing is hand washing and hand sanitizing all the time.  She doesn't have to wear a mask unless we go out into big crowds.  Any signs of fever, she's back again. 
We went downstairs to see the therapy dogs again.  She really enjoys them.  They send her in kind of a trance as she's petting them.  One of the dog owners asked Haylee is she wanted to have her picture taken with 2 of the dogs and she agreed.  The dog owner had a Polaroid camera so she gave Haylee the picture after it was taken and Haylee brought it over to me with a look on her face that said, 'What do I do with this?'  I explained to her what a Polaroid picture was (as the image was coming into view) and asked if she had ever seen one before and she said no.  She made me feel soooo old!!
We left today around 12:30pm!  We brought home 6 days worth of IV antibiotics - it doesn't seem like much but all of it has to go in my fridge and they look like baby bottles with a balloon inside.  It's weird looking.  Haylee can carry it around with her instead of having that pole to navigate (which is so much easier!).  I hooked up the first one today at 4pm with no issues.  It really is simple, just a few steps to remember.  Once we are here for good, it'll all become 2nd nature to me.  She has to get Benadryl by mouth since we're home and it didn't kick her butt at first, but it did put her to sleep.  She has to take the adult pills.  At least she's used to taking pills!
When it rains, it pours around here!  First, Haylee is diagnosed with leukemia. Second, I'm out of work for a undetermined amount of time to take care of her.  Third, Haylee has to see an opthamologist (she may need glasses).  Fourth, back to the hospital we go with fever. Fifth, we get home and are now having septic issues!  All in a month...literally.  It's been a month today since we headed to the urgent care where it all started.  It's been the longest and craziest month of my entire 30 years. 

The good thing through it all, the 4 of us are doing great!

WBC - 3360

Platelets - 282,000

HGB - 9.6

SEG - 4

Monocyte - 14

ANC - 130 (should be around 1000+)

12/19/11 - There's magic in the air

Benadryl Coma (haha!)

Haylee slept through the entire night - she didn't get up once!  I, however, can't say that.  She had meds during the night and our night nurse was not on her game because it seemed like her machines were beeping all...night...long. 
Haylee had to have a 30 minute wake up call from her day nurse, Stephanie.  Like previous posts have said, she's known to be very grumpy when she has to wake up when she's not ready!  She did good with her morning meds and went back to sleep shortly after getting Benadryl to have Vancomycin antibiotics.  She tells the nurses every time how much she hates taking the Benadryl because she gets angry and very sleepy with it.  It's something she just has to deal with unfortunately. 
She woke up from her Benadryl coma around 10:30am.  Her PawPaw came to visit for a few hours and Adam came by and brought her a McDonald's kids meal (which she ate every bit of).  She enjoyed the visit - she was laughing and giggling with PawPaw and Adam most of their time here. We walked Adam down when he had to leave and then swung by the vending machine so she could get some M&M's.  On our way back to the room, we passed one of the moms of a boy she kinda made friends with while being here.  They get to go home tomorrow!  Soooo happy for them :) :) 
We hung out in the room for a few hours after they left before going downstairs to a magic show.  She had to have more Benadryl hooked up to get ready for more antibiotics (the Vancomycin is every 8 hours).  The nurse ran it over 30 minutes to give her time to see most of the magic show before she got really sleepy.  She made it the entire hour but was pretty much dragging her feet back upstairs.  I asked her if she wanted something to eat but she said no that she was tired.  I took her back upstairs then went to get myself some dinner and picked her up some pizza for dinner.  Since she started her treatment, her tastes have changed.  She won't eat some of the things she used to eat like macaroni & cheese, PB & J, eggs, pancakes....she only wants pizza, chocolate ice cream, and apple juice.  I've read that can happen - I hoped she would want more healthy choices!  I guess I should take what I can get because before too long she won't want to eat anything at all. 
Baths and a little Beauty and the Beast on Disney later on! :)

Side note:  The case manager in charge of linking us to the home health company called me during the magic show.  They have been told that Haylee will be going home on IV antibiotics and that a nurse will be out tomorrow morning at 8am to show me how to hook up and administer the antibiotics.  That's a good sign that she will be sent home in the next day or two.  Let's just hope I can keep her out long enough to actually enjoy being at home! 

WBC - 2280
Platelets - 291,000 (huge jump from yesterday and back in the normal range!)
HGB - 10.7
SEG - 10
Monocytes - 4

Counts ARE recovering - slowly but surely!

12/17-12/18/11 - Fun times with Nonna!

My mom came again this weekend so that I could go home with the men in my life :)  The blog will be in her words for the most part.

Saturday
Haylee has a restless night Friday until about 1am.  After that, she slept really good until about 8am because she had to wake up and take her morning pills.  Her day nurse was Linnea and she was very patient with Haylee because she has a reputation around here of being a "cranky monkey" when she is woken up to take her meds. 
We went to play BINGO and she won 3 prizes, but not the one she wanted.  After BINGO, she wanted a kids meal from McDonalds, so I went to get it for her.  She ate most of it, but she said the fries were cold.  She played in the playroom for a while - she's very bored without her electronics!  Her mom is bringing them on Sunday.  She wanted an ice cream so we went down to the cafeteria because room service was out of her favorite orange sherbet.  She picked out a chocolate brownie concoction that was as big as she is and ate the whole thing!!
 Her night nurse was Ashley - and Haylee talked her ear off!!  She took her evening meds really well and slept through the night (she woke up once to use the restroom but went right back to sleep right after).

Sunday

The doctor came in this morning and said that she would probably go home in a couple of days!  She has an infection and her counts are down.  She will most likely go home with IV antibiotics and that's OK as long as she's home.  She wanted to go down to the gift shop and get a stuffy - like she needs another one!  As we walked by the cafeteria, she decided she wanted some pepperoni pizza and ice cream.  The cashier said that she could just eat downstairs and to have the nurse call with the meal ticket - yay!  Saved Nonna some money! 

I came back this afternoon - according to the nurse, she had positive blood cultures in both lines.  They are doing antibiotics in both lines to kill the bacteria so that she doesn't have to have the line removed and replaced - that would be awful (so far, it seems to be working)!!  They have been taking blood for cultures daily and so far all cultures have came back negative.  They like to have 3 negative cultures before they will send her home.  Haylee's counts are down, but the nurse said she just has to will those healthy cells out of hiding so she can go home - Haylee thought that was funny.  If her counts go up and the cultures stay negative, we should be outta here this week sometime. 

WBC - 2190
Platelets - 115,000
HGB - 12
SEG - 8
Monocyte - 11

12/16/11 - Day 1 of our 2nd hospital visit

Turns out the blood culture taken from one of her central lines tested positive for having bacteria in it.  Apparently it can be a common thing.  Needless to say, I went through so much guilt because the type of bacteria found can be from skin, mouth, nose - I changed her caps, saline flushed, and hep locked her lines Wednesday afternoon.  There's no way to tell what really caused it at this point but I went through the guilt anyway. 
She hasn't had anymore fever since yesterday afternoon :)  Maybe that means the antibiotics are working!  I asked them to take her off the IV fluids and let her try to drink on her own (and they did).  She went downstairs to The Voice with a few other kids from the floor and a Child Life Specialist to meet James Durbin, one of the former American Idol finalists from one of the years past.  I don't watch it so I didn't know who he was. 
We've had to find ways to keep ourselves busy because even though I thought ahead to pack a bag just in case we had to stay, I didn't pack ways of entertainment!  No DS, no tablet, no laptop, no books - NOTHING!  We've pretty much watched TV, colored pictures, and wore out the video games in the playroom. 

My mom is down tonight to stay with Haylee for the weekend.  Adam's Christmas party is tonight and we are in need of time to ourselves and a night away from our worries, our responsibilities...our lives.  We worried about Haylee and Mason, talked about Haylee and Mason to people (they asked!) and to each other but just to have the time together and out with his work crowd (including awesome friends, Durena & Jerry - thanks for being great distractions!!!)...made all the difference in the world.  We really had a FAB time and it was MUCH needed together time!

WBC - 4200
Platelets - 71,000
HGB - 9.9 (IV fluids can dilute the blood)
SEG - 48
Monocytes - 11

12/15/11 - Out for almost 48 hours

Well, we were re-admitted to the hospital today.  Haylee developed a fever this morning of 101.3 and they wanted us to come down to have labs drawn to find out what's going on.  She slept most of the way down to the clinic and in the clinic.  We waited for 2 hours.  Dr. Keller came in and said she wouldn't have to stay but if her blood cultures came back positive over the next 24-48 hours, then we would have to come back and be re-admitted.  Since she has been complaining about her wrist, he ordered a wrist x-ray which came back normal so he said it was probably related to the leukemia treatment and some of the other meds which can give some nerve pain. 
Once we got back from the x-ray and she got settled back on the table, she developed what they call a 'riger' (i'm not sure that's how you spell it!), which is when someone is given antibiotics for a bacterial infection, it begins to kill the bacteria but it releases toxins in the bloodstream causing uncontrollable shaking accompanied with being cold (like having really bad cold chills).  With that, usually within 30 minutes, a fever develops.  Since that happened, they decided to re-admit her because a riger is a tale-tell sign that she would have a positive blood culture (which she did but did not develop a fever after the riger).  She was NOT happy - she started screaming and crying.  I felt so bad for her!! They hooked her up to IV fluids and she was saying over and over, "I hate my life."  I started tearing up with her and did my best to explain to her that sometimes these things will happen and that we just have to deal with them as they come.  She finally calmed down and went back to sleep.  It was so hard for me to keep it together with her saying that.
She slept off and on all afternoon and early evening until about 8pm.  They started her on 2 antibiotics immediately along with her other pills.  She ate some dinner, got changed for bed, then pretty much went back to sleep around 10:30pm and slept all night.

12/14/11 - Our first day of freedom!

What a great first day home!  She slept through the entire night - I had to wake her up this morning at 9:30am to take her pills!  She only growled at me for a minute, then she took them. 
I cleaned the house all day while she just laid around and relaxed.  She didn't eat a whole lot today but I was able to get her to drink for the most part.  She wanted to play on the Wii so I let her do that while I cleaned.  We were both entertained :)
She had been complaining since before her diagnosis that she was having trouble seeing and also that her wrist was hurting.  We made an appointment with her regular doctor to have her vision checked as well as have her wrist looked at.  According to the vision test, she has 70/20 vision in both eyes so they referred us to an opthamologist.  That appointment is pending.  As far as her wrist, the doctor said it doesn't seem to be related to the bone but maybe the ligaments.  The doctor recommended she wear a wrist brace, put icy/hot on it, and have her wrist massaged to see if that works.  We have no idea what she could've done.  I know that the ATRA she's taking can make her muscles sore but just her wrist?  It's so bad she has trouble opening doors. 
The rest of the night has been pretty uneventful and we like it that way.  She's glad to be home and so am I.  Mason and Adam are pretty happy, too :)

12/13/11 - WE'RE HOME!!

Riding shotgun on the road home!

The doctors came in early this morning to tell us we were going home today!  Her counts look good (although still low) and she's been doing so well!  She had to finish her last round of antibiotics and we were out the door (after we loaded up 5 tons of stuff that Haylee had in her room!). 
We were discharged around 12:00 but had to go to the CVS in Emory Village to have her prescriptions filled.  What a pain!  The hospital faxed over the scripts (8 of them...) but they only received blank pages.  They gave Adam a hard time dropping them off and told him if would be a few hours!  Really?!  I went in and showed them the most important 3 of the 8 and asked them how long it would take.  The girl behind the counter rudely said 15-20 minutes.  Haylee wanted a hamburger from McDonalds so we went, grabbed some lunch, then went back to get it.  It was ready, thank goodness.  We were tired of being down there and was ready to be on the road to home! 
We unloaded the 5 tons of stuff then went to pick up Mason.  Everyone was so excited to see Haylee!!!  She was a little overwhelmed cause she's not used to that kind of attention.  She handled it well and I was equally glad to see everyone :)  We grabbed Mason and went home.  I thought he might have something to say when he saw Haylee without her hat and her head shaved, but he didn't even notice!  Talk about a brother who loves his sister no matter what!!  We had to point it out to him and then he said, "She looks like a boy."  Ha ha!  He said the same thing to Kim when she shaved her head.   It didn't bother Haylee and Mason doesn't see that she has no hair...sweet :)
My dad called to talk to Haylee and AGAIN asked her if she wanted him to shave his head like hers.  She said, "No" and was VERY adamant about it.  She told him she thought he looked good with his hair.  I asked if she would be mad if he shaved it anyway and she said she would be very mad.  Enough said!
Dinner time came around and she wasn't very hungry but she did eat a little.  I'm fine with her not eating as long as she's drinking (she's had 3 juice HUGS since she's been home - that's a huge improvement from the hospital).  She complained a little from her neck hurting (we think she slept on it wrong) and just gave her Tylenol to help. 

She's done with the Induction phase as of the 21st.  She has a clinic visit on the 22nd, then another bone marrow aspiration the week after Christmas to check for remission (fingers crossed!).  She will begin the Consolidation 1 phase after the New Year and it lasts 10 weeks (Monday-Friday clinic visits for 2 hours each time).  Sometime at the end of February or beginning of March she will be re-admitted to the hospital for the Consolidation 2-4 phases.  That will be a few months :(

Whitney, a good friend of mine, passed along something she found and I thought I'd share (at the bottom of this post).  The meaning of the words hit very close to home for us.  Thanks Whit!!

Thank you to EVERYONE for your continued love, prayers, and support for Haylee!!!  We're so glad to be home!

WBC - 2780
Platelets - 65,000
HGB - 10.8
SEG - 8
Monocytes - 3

You never know how STRONG you are until being STRONG is the only choice you have. 

12/12/11 -

Pumpernickel the Rabbit

Cousteau the Hedgehog

Opus the Opossum

Haylee slept really good last night after about 1:30am.  She was up early, though not really sure why.  She told me when she woke up she forgot about her head being shaved and it freaked her out for a minute.
Ha ha!  A doctor came in really early just to check on her and told Haylee she liked her new haircut.  Haylee told the doctor she liked it because it was like her Daddy's...sweet :)
They came in and gave her her ATRA pill as well as her blood pressure pill.  She wasn't sitting up quite all the way and ended up choking a little and it caused her to start throwing up.  She didn't throw up a lot and was able to keep the pills down. 
She was given Benadryl at 9:30ish and it knocks her on her rear!!  I actually hate the fact that she has to have it because she gets grumpy and doesn't have a restful sleep during that time in the mornings (and it's BORING when she's sleeping).  If it weren't for the Benadryl, I could get her to go to school first thing in the morning and she REALLY needs to go today. 
The renal doctor came in to check on Haylee this morning.  Her blood pressure first thing this morning was 135/105 so they gave her IV blood pressure meds to bring it down quickly.  According to him, the IV BP meds are so insignificant (because it's only 4mLs - 10mLs is what most get) that she doesn't even need it really.  As long as she's getting the pill, it can be managed that way as an outpatient since she will be in clinic  daily.  Her blood pressure isn't extremely high, but a little higher that what it should normally be.  He is going to up the dose a little or change it to something else completely to get her blood pressure under control.  He feels that it's just temporary since she's never had high blood pressure before.  Once her blood pressure is back to normal, she will stop the BP meds.
Adam came for lunch today and with his help, we were able to rouse Haylee out of her Benadryl slumber.  We walked him downstairs and then went to school for an hour.  We were in and out of the room all afternoon doing laundry, having Tea at 2, and going to the playroom.  At 4pm, we went downstairs because the Atlanta Zoo brought some furry animals to show to the kids.  Haylee really enjoyed herself.  We were called out of the show because a home health nurse was there to teach me how to flush and hep lock her lines (flush with saline and heparin lock to keep her lines open).  She also brought me my first month's supplies for at home care since we will be going home this week!! 
Haylee's second grade teacher, Ms. Matthews, and her reading teacher from last year, Mrs. Smith, came for a visit as well.  The visit had to be cut very short because the home health nurse was waiting.  That was a bummer for Haylee - she adores Ms. Matthews.  
She played catch up on some schoolwork and ate some dinner - mac and cheese and orange sherbet.  It's been a very uneventful night but we like it that way. 

The Hem/Oc doctors came in today and said that everything including her counts are looking good and she should be able to go home this week!  No set day just yet; I'll double check that tomorrow!

WBC - 2770
Platelets - 65,000
HGB - 10.8
SEB - 7
Monocytes - 2

12/11/10 - Happy Shave-Day Sunday!

Before



After





All the hair on the ground...we kept 2 locks :)



 

 

She had a restful night between 1:30am-8am.  She was unhooked from the pole during that time so there was no beeping :)
Her blood pressure is still high but she began taking the BP pill daily yesterday.  The renal doctors came in after looking at the ultrasound pictures and her kidney function is fine :)  They said her high blood pressure could be a result from the transfusion given to her Friday evening. 
Talked with Haylee this morning about cutting her hair.  She was sitting on the edge of the bed pulling it out just by running her hands through it and said she was making a hairball with it!  Ha ha!  Asked her if she wanted to go ahead and shave it and she said "Yea".  Brittany, one of the Child Life Specialists, has the clippers but Haylee wanted to wait for her Mommy because she shaves Daddy's hair so she knows how to do it!

So, I came back this afternoon for the week.  My mom told me she wanted a chocolate milkshake so we stopped on the way in and grabbed her one.  Haylee was in a pretty good mood when we arrived.  I love when she's in a good mood :)
She visited with Mason and Adam before they left.  Adam and I were talking to her about her shaving her head and what it would feel like.  I told her that when she lost everything, even the peach fuzz, Adam was going to straight razor his head to match.  She smiled about that.  She wanted to know if Mason was going to hug her before he left (yea, she misses him!). 
Brittany came back with her clippers and Haylee let her shave her head!!  She did SOOO awesome!  She didn't even cry!  We had a fashion show with all the hats she has...she enjoyed that.  I took a picture of her with every one of them on.  She told me she didn't want to leave her room without a hat on.  Nothing wrong with that!  One of the volunteers came by and asked if she wanted to do some arts and crafts in the playroom, so she went and played in there.  She had a bath to get all of the hair off of her and then watched "Camp Rock 2". 

*The Hem/Oc doctors came in today and told my mom that she could still go home this week as long as her counts show a stable trend and not an up and down motion.  FINGERS CROSSED!!

WBC - 2240
Platelets - 77,000
Hemoglobin - 11
SEG - 4

Monocytes - 1

12/10/11 - I guess I spoke too soon...

**Note:  I go home on Friday nights for the weekend so that I can spend some time with Mason.  My mom, Nonna, does us a huge favor and gives up her weekends to stay with Haylee at the hospital (and we are forever grateful!).  Since I started the blog, my mom decided that she would keep a journal of her time here so I could keep up with all the information. (Thanks Mom!)  A lot of the blogs will be in her words :)

Friday afternoon into the evening, Haylee had to get 2 bags of blood because her hemoglobin had dropped below 8.  When she was halfway thru her 2nd bag, she began to have a reaction - rash, face swelling, and high blood pressure.  They stopped the blood and gave her some Benadryl. 
Haylee slept very restlessly Friday night.  Her blood pressure has the staff puzzled.  Sometimes getting a transfusion can make the blood pressure go up so she was given Lasxics to reduce any fluid she was retaining and boy does that stuff work!  Up and down, up and down to the potty all night. 
She has had a headache since 2am.  The doctors came in and wants to run another CT scan on her head to make sure everything is OK (this was the 2nd day in a row she has had a headache).  She had the test done with no meds and did GREAT!  They are sending a renal doctor in to come and look at her to see if her kidneys are functioning properly.  She went down to have an ultrasound done of her kidneys.  She did awesome!  She got platelets today even though those counts actually came up on her own. 
Since the doctors are concerned with her blood pressure, they started her on a daily BP pill.  She was drinking a carton of chocolate milk when the nurse came in the give her the pill.  It was so small she didn't know whether she swallowed it or it down the straw into her milk!  Ha ha!
We went down to the lobby to the the Happy Tails Therapy Dogs.  There were 4 Golden Retrievers, a Maltese, and another big white dog.  We came back to the room to get money for a candy bar from the gift shop as well as a slushie.  She ordered spaghetti for dinner but fell asleep before she could eat it.  Once she got up, she ate a little (but she ate some!).

CT scan came back normal :)

Since all this is happening, this will probably delay her getting to go home this weekend. 

WBC - 2580

Platelets - 15,000 (up on their own from 12,000 which has NEVER happened!)

Hemoglobin - 11.1

SEG - 2

Monocytes - 4

12/9/11 - What the power of prayer and happy thoughts can do!

We had a better night!  Woke up this morning to...NO FEVER!  She was in some mouth pain and was nauseous this morning so they gave her some Tylenol for pain to start with and Krytril for the nausea.   Haylee ordered some applesauce and cheese grits for breakfast and got a dose of morphine so that she could eat.  She ate almost all the applesauce but wouldn't touch the grits.  I thought we were going to have yet another lazy-sleep-til-noon morning but oddly enough she wanted to make snowflakes!  She sat right on her bed and did just that! 
My dad, PawPaw, came in for a visit and she perked up.  Adam came in bearing gifts from a few people at the center (thank you!!!) and she perked up even more.  After a while, she was laughing and joking with both of them.  PawPaw sat with her while we went down for lunch but before we left, she told us she wanted a hot dog and french fries.....!!!!  Although she didn't eat but maybe 1 or 2 of the fries, she ate half the hot dog.  Very impressive :)
She went down to school for the last hour of the school day.  She really does enjoy school when she gets down there.  The teachers down there are so nice as well.  They allowed us to take her notebook with us so that she could catch up some.  She didn't make it to school as often as I would've liked this week since she wasn't feeling too well. 
She was given 2 bags of blood since her hemoglobin dropped below 8.  Her blood pressure goes up and she gets kind of tired from it.  It made her a little nauseous - the nurse said it can happen sometimes.  She ate some orange sherbet...not cheese ravioli or a hot dog but she ate 3 times today!
One of the Child Life Specialists made her 'Beads of Courage' necklace with her today.  She gets a bead for everything she has accomplished from each needle pokes to each overnight stay in the hospital to every time she had a fever to surgery.  It's so neat to see all that she's accomplished and overcame so far.  She will continue to get the different beads as she goes through her treatment.  She also brought a 'Beads of Courage' sibling package for Mason - he's going through some stuff too!

Nonna's with Haylee this weekend so I'll update as I can, otherwise it'll be Sunday afternoon for a more detailed update :) 

On a wonderful, absolutely fantastic note:  Colleen and Dr. Kellar came in today and gave me a copy of her counts...which are ON THE RISE!!  She may get to go home as early as this weekend but definitely by Monday or Tuesday of next week!!  She will have her bone marrow tested in the week or so after discharge to see if the leukemia is in remission thus far.  Most likely, after Christmas, she will begin her daily outpatient treatment with the Arsenic for about 2 months.  We are so thankful for everyone's thoughts, prayers, and support for Haylee and our family during this rough time.  We've got a very long road ahead but with so many wonderful people such as yourselves and everyone else who continues to be so thoughtful and so supportive, we know that Haylee isn't alone in her battle.  She's got an awesome posse!!

WE'LL BE HOME FOR CHRISTMAS!!!

WBC - 2640
Platelets - 12,000
HGB - 7.9
SEG - 5.0
Monocytes - 3.0

If you would like to help....

I get comments, emails, text messages and phone calls all the time saying if we need anything just ask or asking if we need anything.  Most of the time the answer you'll get from me is "No thanks, we're good" or "Ok, I appreciate it".  At this point, we really don't know what we need.  I'm going to be out of work full time for a while, maybe even until summer (part time here and there)...I'm not sure of the timeline.  If you are really interested in helping out, Discovery Point inside Hamilton Mill and Regions Bank - Gainesville Main Office are selling orange Leukemia Awareness bracelets that say "Hope for Haylee" on them.  I'm not sure of the cost of each bracelet.  Also, at any Regions and RBC bank, donations can be made in Haylee's honor (reference the Haylee Hyde fund).  Thank you to EVERYONE who has helped out in any way, whether it be a daily prayer, a passing thought, a monetary donation, keeping my 2 favorite men fed, visiting us in the hospital, or sending gifts for Haylee....we are MORE than thankful to you.  Our words cannot begin to express our gratitude and the elated feeling we have when we think about all the love and support that's going on for Haylee all around us during her battle.

As one of her friends wrote on a card for her, "Leukemia may have won this battle, but Haylee will win the war!" 

Continue to send prayers up for our little girl!!  We can't thank you enough :)

12/8/2011 - I like long walks in hospital corridors and sitting in gardens :)

Haylee had a fever again this morning - 101.4 and it's day 6.  If she has another one tomorrow they will change some of her medications.  She had Tylenol and Benadryl between 9-9:30am and was in and out of sleep until about 1:30pm.  So, needless to say I was BORED OUT OF MY MIND!  I was able to do some word searches, update my craigslist account, balance my checkbook, check my e-mail, color some ornaments, unwrap a present donated from the Taylor Brooks Foundation for Haylee, and view this blog to make sure it was like I want it.  Yea, I got a few things done! :) 

Dr. Kellar came in and said her sores don't look much better.  I've managed to keep her off the morphine today and take only Tylenol for the pain.  I'd rather her have morphine at night.  Anyway, he said that her counts should start coming up, staying up, and stabilizing by this weekend or early next week.  She has no monocytes today.  That was a bummer to me this morning but, it is what it is.  I felt like she backpedaled a little bit and I don't need to look at it that way.  I guess I was just looking for her to have the same amount or more.  I didn't think she would go back to zero. 

Once I was finally able to convince her to get out of bed, we walked downstairs to the garden and sat outside in the sun.  She hasn't been outside, like really outside, in weeks.  She really enjoyed the fresh air (well, through her mask!) and the sunshine.  We walked around the back part of the garden where she hasn't been before and she was getting cold so we went back inside and found The Voice, the radio station donated to the hospital by Ryan Seacrest.  We got to go inside and look at all the pictures of the people who have been here.  Daughtry and Gabbie Rae will be here at The Voice next week!  We're pretty excited about that. 

We went downstairs and saw a concert from Callenwald Orchestra Band from Decatur.  It was nice to hear instrumental holiday music.  The music from How The Grinch Stole Christmas was the best!  Santa Claus made a surprise appearance and it put a smile on her face.  Santa even lead the band in a song. 

Back upstairs, her dinner order wasn't put in when I called at 5:30pm and left the message so I had to re-order her food at 7:45pm.  It made me mad because the poor baby hasn't ate and she FINALLY wants real food and they didn't get the order!!  8:25pm, she finally gets her cheese ravioli with meatballs.  Poor thing...she was hungry and I'm more than thrilled!!!!!!

WBC - 2730
Platelets - 16,000
HGB - 8.1
Monocytes - 0
SEG - 1

12/7/11 - No food for 7 days...

She had a good night last night, although she ended up running a fever after all of 101.  Once it broke, she got a bath to make her feel better and then she was out shortly after that.  We must have been super tired this morning because we slept (or dozed in and out) until 11am.  I can do it easily but Haylee...doesn't happen at all!  And her medicine/IV machines...not my friend.  Those stupid things were beeping from 6am-7am almost non-stop.  Maybe that's why we slept for so long!
I convinced Haylee to go down to school for the last hour it was open.  I killed some time by walking around the gift shop and pretty much looked at each and every little thing it sold.  She had about 15 mins left of school so I went back downstairs to wait on her to finish and the teacher there told me a volunteer took her back upstairs because she wasn't feeling well.  Is she skipping school early!?  I got back to the room and she was complaining that she was nauseous while she was at school as well as right then.  I kept telling her that what she's feeling is lack of food for 7 days.  She asked, "How can I still be alive with no food?"  I explained that the IV fluids, the milk she's been drinking, and the Boost boxes have kept the nutrition that she needs in her body.
Dr. Keller came in and looked at her.  Still impressed with her progress!  I asked him what her monocytes needed to be at for him to be satisfied enough to let us go home - anywhere from 5-8.  She had no monocytes yesterday...she has 2 today!!!!  To me, that's HUGE!!  It shows something good is going on in her little body.  He also said she needs to be fever free (she's on Day 5 of fever) as well.  They aren't too worried about the fever because the 2nd set of blood cultures that were taken on Monday were still negative (nothing growing).  The fever is more than likely coming from the leukemia itself.  Colleen, the CNP that checks her daily as, said she would be surprised if she's here for Christmas...that's what I'm talking about!!!  I need good news like that daily! 
Home Depot was out today with a kids workshop - she painted a birdhouse and perked up during and after that.  Adam and Mason came down to have dinner with us :)  Adam brought her a Pokemon card book with all her cards from her book bag at home in it and she was so happy!  I had her convinced to eat some vanilla pudding (her idea!) but since she has to wear her mask downstairs, she just had to drink milk.  Her mouth started hurting while we were down there so we came back upstairs to get some pain meds.  Once the pain meds kicked in, SHE ATE SOME VANILLA PUDDING and almost all of it at that!!  She actually ate some real food and not just liquids.  I know that vanilla pudding may not be real food to some people but when your child hasn't ate in 7 days and has refused to eat anything at all, vanilla pudding is like steak and potatoes!!

SHE HAS 2 MONOCYTES TODAY!!!!

WBC - 1710
Platelets - 22,000
Hemoglobin - 8.4
SEG - 0
Monocytes - 2

12/6/11 - Happy Tails and Sleepy Days

We had a better night last night because Haylee slept!!  She was up at 7am for a potty break and couldn't go back to sleep.  She began running a fever around 8:30am so they went ahead and gave her all of her AM meds as well as Tylenol and a dose of morphine for the mouth pain she was complaining about.  She got a Boost Kid Essentials down before she took a nap until 10:30am. 
The Happy Tails Therapy Dogs were downstairs in the lobby and she was really excited about them so we went to check them out (she saw different dogs Saturday with Nonna).  The dogs are really neat - they lie there or come right up to you if you stick you hand out to them. 
We went back upstairs and I showed her this blog about her.  She said, "I see it."  That was it!  Ha ha!  She hasn't had the chance to read it and once she does she will understand why it's so important to me to get this out to people and for me to just get my thoughts down.  My friend, Meth, came by for a visit and Adam came to eat lunch with us.  She was still out of bed and on the couch when they arrived.  She started complaining pretty bad about her mouth sores so the nurse came in and gave her a dose of morphine so that she could go down to the cafeteria and have lunch (drink her Boost!).  The nurse said she should be fine to go downstairs - she wasn't going to fall down or anything.  WRONG!  She was passed out cold within 5 minutes.  Meth stayed with her in her room while Adam and I went to get lunch.  She slept from around noon until 4pm.  She was super tired from her big day yesterday, I guess. 
Still not eating, she drank another Boost when she got up.  Dr. Kellar came in during her nap and told me along with watching her WBC count to rise, to look for her monocyte and neutrophil count to rise - which they aren't.  She currently has no monocytes.  Monocytes show them that her bone marrow is producing normal cells and not leukemia cells.  I promised her she could watch the Twilight Saga so we began watching 'Twilight'.  I think she liked it...?  The nurse is afraid she's going to spike another fever soon so they are watching her closely. 

On another note, Adam went to meet someone (we will call her Mary) who wanted to buy some decorative mirrors from us off Craigslist.  She knows our situation and has read the blog.  She made a sizable donation in Haylee's honor in addition to buying our mirrors.  I would like for her to know that we are extremely grateful and humbled by her and her family's selfless act of kindness.  It means so much to us to know that there are still wonderful people in the crazy world we live in such as Mary, who still know what it means to love one another.

WBC - 2110
Platelets - 29,000
Hemoglobin - 9.3
Neutrophils or SEG - 2.0
Monocytes - 0

12/5/11 - Had a busy day!

A lot went on around here today and Haylee joined in the fun!  I learned how to change her central line dressing - all by myself - as well as the cap on her central line tubes. 
She went to school for an hour around 10:45.  After school, she shopped in the North Pole Holiday Shop to pick out a present me and Adam (they would only let her do 2 so she couldn't get Mason one).  We had lunch with PawPaw and Daddy - well we ate Moe's/Cafeteria and she drank milk and looked at the aquarium!  She visited with PawPaw.  They joked around, played 'thumb war', and just talked.  My dad was tickled that she was doing good and happy.  That's the best he's seen her in a long time. 
She took a nap then Dr. Keller came in and took a look at her.  He said they are so impressed and happy with her progress.  Haylee asked him how long her mouth would hurt and he said by the end of the week she should feel a difference in the sores.  I asked him when he thought she would get to go home.  He said as long as her counts continued to rise, she stayed stable, and began eating and taking in fluids like normal...she could go home anytime.  He said we're now on a day by day stay.  That's the best news I've heard in almost 3 weeks!!  She's going to make it home for Christmas - I can feel it in my heart of hearts!!  She told me today she didn't want to be here during Christmas and I reminded her what Dr. Kellar said.  She said she could do it. 
They did the Christmas tree lighting tonight as well as brought in a band called 'Unhindered' to sing some Christmas songs.  They did a pretty good job.  I was taking pictures then she took the camera and took her own.  They lit the tree and had a bit of technical difficulty - the top half didn't light!  It was pretty anyway and Haylee had a good time.  She had to have some morphine after trying to eat a bit of dinner and they also started her on a new anti-fungal medication as a preventative treatment. 

The results of the blood cultures came back and all was negative :)

WBC - 1970
Platelets - 49
Hemoglobin - 9.4

12/2/11- 12/4/11 - Weekend with Nonna

My mom, "Nonna", came to stay with Haylee for the weekend.  Her teacher from school came to visit her in the evening and brought her schoolwork and some goodies to help keep her busy during the days. 
On Saturday, she visited with my aunt and uncle as well as her PawPaw (my dad) during the day.  Milk is about the only nutrition and fluids she's been taking in - she's back to not eating.  They had to hook her back to the IV fluid bag.  She had been getting Lortab for pain but with nothing on her stomach but milk and slushies, she ended up throwing up.  She also had to be given platelets.  She played board games with Nonna and Aunt Sherry (and cheated I think!). 
Saturday evening, she spiked a fever of 102.  Since we were waiting for blood cultures to come back they went ahead and started her back on her Fortaz antibiotic and started her on Vancomycin, another antibiotic.  They began running the new antibiotic into her so fast she developed what is called "Red Man's Syndrome" where she turned red all over and began itching non-stop.  Her scalp turned red, her hands and feet started itching real bad.  They slowed the antibiotic and gave her some benadryl to stop the itching.  She was fine after that. 
Sunday, she had a visit from her 2nd grade teacher and perked up some.  She was very blah when I came back.  Her and Nonna met us downstairs and she played with Mason some.  Even laughed and giggled with him!  But she still doesn't miss him (so she says....!).  When we said goodbye to Nonna, Daddy, and Mason, we came back upstairs and she was still blah.  I asked if it was normal for kids to slip into a kind of depression and yes, it is.  She seemed like that's what was happening.  I'm sure it's difficult - stuck in the same hospital room day in and day out, not going outside, feeling sick, mouth hurting from mouth sores - it's a lot for a kid to handle. 

MRI results came back Friday morning - all is good!! 

12/2
WBC - 1620
Platelets - 21,000
Hemoglobin - 12

12/3
WBC - 1120
Platelets - 11,000
Hemoglobin - 11.3

12/4
WBC - 1290
Platelets - 61,000
Hemoglobin - 10

12/1/11 -25 Days of Christmas!

The hospital really does some great things for the kids during Christmas.  They have different holiday activities the kids can participate in and it makes the time pass by as well as their time here special.  Today, Haylee and I went down to the lobby and had she had her picture taken with Santa (picture to come when they email it!).  She also went out to the garden to see the real reindeer and she thought that was so neat!  Later in the evening, her teachers when she was in PreK came to visit her and brought her ornaments and garland for her Christmas tree and brought along art supplies and all sorts of goodies.  She really likes her tree and the different ornaments they brought to put on it. 

They took her off of her Kytril (for nausea) and Allopurinol (breaks up uric acid) because they said she didn't need it.  She is starting an anti-viral medication to see if it will help the mouth sores any.  They drew blood for cultures to test for different viruses like strep throat, chicken pox, herpes simplex (cold sores), and a few other things.  We should get those results back in a few days. 

WBC - 1660
Platelets - 29,000
Hemoglobin - 11.7

11/30/11 - The beginning of the mouth sores

Haylee's been in another pretty good mood aside from she's developed some mouth sores from the chemo and ATRA.  They're pretty sore so eating has become a chore now.  We've still been getting her to drink which is good.  She's been sleeping on and off today.  She did have to have 2 bags of blood today due to her hemoglobin dropping under 8.  No real changes today...no news is good news!

WBC - 1640
Platelets - 73,000
Hemoglobin - 6.6

11/29/11 - Finally, the MRI.

Haylee had her MRI today, finally.  They wanted to still get the MRI just to make sure no bleeding was going on and everything was still good.  She went down around 12:30pm and got her Versaed (giggly juice) and got set up for the MRI.  She had general anesthesia since she couldn't handle the sedation last time.  When she got out at 3pm, she was out until 7pm.  They had to wake her up to take her morning ATRA pills and she was ANGRY!  She was yelling at me and swung at me and everything!  After the nurse left and she went back to sleep, I went in the bathroom and cried.  I know it's not something she can help and it's not her but I didn't know what to do.  I just have to keep thinking, "I can do this.  Don't let her reactions get to you.  She's sick and is handling it the best she can."

On Monday, they took her off of the antibiotic (Fortaz) she had been getting since she was doing so well.

WBC - 1760
Platelets - 81,000
Hemoglobin - 8.4

11/27/11 - Start of an uphill battle

I feel like I can officially say that she's on the road headed up.  Sure, there will be some pretty bumpy paths but she's been doing great!  She doesn't sleep very well but all in all had a pretty good day today.  She played and was in a good mood most of the day.  When I came back from my night with Mason, I brought her pink Christmas tree to put in her room to make it more festive.  She enjoyed putting it up with me.  One of my friends bought her a pink ornament that says "Diva" on it...so true!  That was the first ornament for the tree.

(the picture shows the best smile we've seen from her since last week in the PICU.)

WBC - 3330; 2490
Platelets - 52,000; 45,000
Hemoglobin - 9.0

11/26/11 - Out of the PICU today!!!!

What we've been waiting for since Monday morning is happening!!  We are being discharged from the PICU and sent back downstairs to the AFLAC Cancer Center!!!  We are SOOO excited and so happy!  The doctors are so impressed her progress and the way she has taken to the treatment so far. 

WBC - 9700
Platelets - 90,000

11/25/11 - Day 5

Adam and I needed some normalcy in our lives so we Black Friday shopped in the Gift Shop downstairs after having breakfast together.  Haylee told us it was OK if we left for a while, that she would be fine.  30 minutes after leaving her, I felt so guilty and was ready to go back up to her.  Because of the doctors doing rounds on the PICU, we were locked out of the unit until 8am anyway so we made the best of it.  We bought Haylee and Mason some little things and just killed some time.
 When we got back, she slept for a little while then to our amazement, asked for our help to get in the chair!  She actually wanted to get up!!  I laid in her bed while she sat in her chair and we played TIC TAC TOE and Old Maid to pass time.  We had a visit from the clowns and that made her laugh and perked up her spirits :)  She had to be given another bag of platelets because they were below 50.  The doctors were still saying she was doing good and we could be out of the PICU in a few days!!

WBC - 32,000; 22,000
Platelets - 49,000; 127,000

11/24/11 Happy Thanksgiving from Egleston :)

She had chemo last night so she wasn't in the greatest moods today.  She just wanted to stay in the bed.  We tried to get her to sit with us and she wouldn't.  Adam climbed in the bed with her and watched a little TV.  She kept having to have the "pink bucket" (in case of vomit) in front of her.  She was nauseous all day, but with nothing on her stomach, she couldn't throw up. 

My mom cooked and brought Thanksgiving dinner for us to eat in the PICU waiting area.  Mason was able to visit with us too!  I was so glad because I've been missing that little dude!!  The doctors have been very impressed with her progress but put her on nutrition IV bags - electrolytes and lipids - because she hasn't been eating or drinking.  We called it her Thanksgiving dinner!!

WBC - 47,000; 40,000

Platelets - 71,000; 52,000

11/23/11 - She had a good day!

It was looking like she was going to stay grumpy and angry all day, but after a morphine induced rest, we convinced her to stay out of bed and sit in a chair next to the bed!  She was hooked up to different machines and her lines where coming out everywhere but she made the best of it.  She watched some TV, she laughed and joked with us, and enjoyed being up. 

We began to talk to her about why she was in the hospital and what exactly her diagnosis meant including how the medicine could make her sick, hair loss, etc..  She understood and took it very well :)  She had a CT scan done on Tuesday to see if she had any bleeding on the brain.  They wanted an MRI on her but she wasn't responding well to the sedation (her oxygen level kept dropping).  She also had platelets given since they dropped to 50.  She was given her 2nd round of chemo during the night as well. 

WBC - 105,000; 91,000; 69,000
Platelets - 58,000; 51,000; 50,000; 95,000

(In the pictures you'll notice how her face looks swollen - it's from the IV fluids because she wouldn't eat or drink.  At this point, she had nothing to eat or drink since Sunday night when she had a handful of goldfish and some Gatorade at the immediate care center.)

11/21/11 - Day One of Haylee's Battle

Late that morning, still in complete shock that my child has been diagnosed with APL Leukemia, I began to let my job and other people in my life in on my reality through text messages because I couldn't bear directly talking to anyone.  I was a wreck just looking at Haylee, knowing that I couldn't help her.  I went through so many emotions - anger, sadness, guilt, hopelessness - none of which I felt just 24 hours ago.  We were told since she was considered High Risk APL, her chemo treatments would start that night. 
She began a medicine called ATRA, which is the acid form of Vitamin A.  She's never had to swallow pills before so I thought she would have a hard time with it.  Surprisingly, she did wonderful!!!  The part she didn't like about it was that she had to be woke up to take the pills twice a day - she was kept on morphine on and off for her stomach and head pain so she was sleeping a lot. She was given platelets overnight to bring them back up. 
She had surgery to have her central line put in her chest so that they didn't have to keep poking her with needles every time they needed blood (which was every 12 hours) and to give medications.  Bone marrow taken from her hip during the surgery and tested to be sure she 100% had APL (which she did).  Around 9pm that night, she began her first chemo treatment - idarubicin.  With help from the morphine, she slept through it.

WBC - 106,000 - 110,000
Platelets - 56,000 - 94,000

The Worst Day Of My Life...

Sunday, November 20 into Monday, November 21, 2011 will forever be remembered as the worst day(s) of my life.  My daughter, Haylee, had been complaining of her head and stomach hurting for about 2 days.  We had been giving her Pepto-Bismol and she was telling my husband, Adam, and I that it felt better after drinking it.  We noticed she had been sleeping / napping a lot the past few days but didn't think much of it because I had been waking her up around 5:30am to get up and get ready for school.  We had also noticed that she had more bruises than usual (she had just finished a soccer season and, let's face it, she's an 8 year old tomboy).  I told Adam that I planned to take her in to her pediatrician on Monday for a strep test since she had the classic signs (minus the fever). 
At 2pm, I went to the grocery store.  By 4pm, Adam was calling me to come home because she needed to go to the urgent care center that evening because she hadn't hardly ate and was sitting in her room rocking on her bed crying that her stomach hurt as well as her gums had started bleeding and were black in some spots.  I raced home, gathered Haylee, and off we went to Children's Healthcare Immediate Care on Satellite Blvd in Duluth.  We waited for about 20 minutes.  From the time we got out of the car until we were called she spiked a fever of 103.  I began to cry because I was extremely worried about her.  She was so sweet and said, "Mommy, don't cry. I'm fine."  We began to walk back to a room and the nurse told me quietly that they were concerned about her symptoms and that I needed to be strong.  The doctor on call ordered a CBC (complete blood count) and found that her WBC (white blood count) was 115,000 and her platelet count was 19,000 (normal WBC for a child is 5,000-10,000 and normal platelets are 160,000-500,000). 
They took me into a room and told me they were in touch with a Hem/Oc doctor (hematology/oncology doctor), they were concerned she may have Leukemia, and were going to transport us by ambulance to Egleston Children's Hospital.  I began to cry hysterically and realized at that point I was alone with my news and had no one to turn to for support at that time.  I got myself under control and went back to the room to call Adam, who was at home with our 3 year old son, Mason.  He rushed Mason to my parents and met us before we were transported. 
Upon arriving at Egleston, Haylee was immediately put on IV fluids and more blood was drawn.  My parents ended up driving down with our son to support us in what was going on.  After all labs were tested, Dr. Cooper (a Hem/Oc doctor) came in to confirm that yes, my sweet baby girl had Leukemia but further tests would need to be done to determine what kind.  We were taken upstairs to the Aflac Cancer Center for the night. 
The next morning (Monday, November 21), Dr. Keller (another Hem/Oc doctor) came in and told us that he was 95% sure she had APL (acute promyelocytic) leukemia, which is a rare form with the highest cure rate.  At that point, we were transported to the PICU immediately because she had a risk of bleeding out and clotting in the brain.

WBC - 108,000
Platelets - 19,000