6/28/12 - The glimmer of hope we were waiting for...

Today was the last day of Camp Sunshine.  Haylee was looking forward to today all week because of the archery and the 'campfire' with s'mores.  I can't believe all the lengths Camp Sunshine 2 U goes through to make sure that these kids still here in the hospital still have the best camp experience possible.  Haylee will be able to go to camp next summer, feeling good and with great counts :) and Mommy won't be as nervous (but nervous nonetheless!). 

Haylee doing some archery

Camp Sunshine 'Campfire'

We hung out in the room for a bit in between activities.  Dr. Ramirez came in to check on Haylee before we disappeared for a few hours - turns out counts may truly be starting to come in and she could be discharged either tomorrow or over the weekend depending on what counts look like tomorrow morning.  Haylee and I are thrilled beyond words but the negative part of me is staying on notice...just in case.  She's supposed to be scheduled for Monday or Tuesday for her BMA regardless of what happens. 
We headed to The Voice at 3:45pm to meet and listen to The Cumberland Collective.  They had a really awesome vibe - like a mix between country music, Zac Brown Band, and Citizen Cope.  There were about 10 guys, playing all different instruments and all had different sounds.  They meshed really well together.  I would probably listen to them if I had their CD.  Before their appearance at The Voice, they were actually on our floor in the teen room warming up (our teen room has drums and other musical instruments) and flooded the floor with good music.  Haylee walked down their and they gave her a shaker and she played with them.  She also played with them at The Voice.  They were talking about how they wrote a song called "Haley" but are now going to change the spelling to how Haylee spells her name cause they like the way hers is spelled.  They were very nice guys!

The Cumberland Collective

Haylee playing her shaker

Haylee and The Cumberland Collective

After they left, Haylee played DJ at The Voice until time for BINGO.  BINGO was busy tonight!  There were lots of people there.  Haylee won Silly Putty for her and Mason, a little brown teddy bear for Mason, and a $15 iTunes gift card for herself.  Not too bad!  We finally went back upstairs about 6:45pm and  CURE brought dinner tonight - Mellow Mushroom.  Haylee wasn't too thrilled with pizza but once she tasted Mellow Mushroom, she changed her mind.
She woke up this morning with some sort of rash on her face (God only knows where it came from but this is Haylee Kate we're talking about!).  It would get better throughout the day and then worse.  It seemed to get worse when she got hot.  We Skyped with Adam and Mason, then Cameron (PM nurse) gave her some Benadryl since the rash seemed more red again.  We watched a little 'Princess and the Frog' then she headed off to bed.  Fingers crossed we get good counts tomorrow!!

I want to recognize the very special people who continue to show support of Haylee and our family throughout this entire journey.  She still has 2 years of therapy left and then another 5 years of staying in remission to be considered 'cured' (Haylee will be about 16 or so).  There are people, near and far...strangers, family, and friends, that continue to be a huge help to us.  I know who you are and so do you...thank you, thank you for everything you do and continue to do.  You will never know how much it means to us :)

WBC - 1970
HGB - 12.2
Platelets - 55k (hold steady please!!)
ANC & SEGs - 0
Lymphs - 93 (going down!)
Atypical - 1 (what's it gonna be?)
Monocytes - 6 :) :) :) (these will eventually turn into neutrophils which make up ANC and SEGs)


The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/27/12 - Counts in limbo and more Camp Sunshine fun

The finger pricks this morning....went.  At 4am, Ashley tried to get the blood from her finger but she just couldn't get enough (and that was after poking her twice) so at 6:15am, Lab came in, poked her right and got what was needed.  Luckily after this morning, they only need enough blood for counts and not counts AND chemistry checks.  She did well for 4am and 6am.  She stalled a little but finally got the job done and went back to sleep. 
Another fun filled morning with Camp Sunshine - fishing, spin art, dot painting, face painting, and drum making!  Also, Mickey and Minnie Mouse were around bringing smiles.  Mickey came to our door and was urging Haylee to join them (we got up late!).  We were able to get a picture with Minnie Mouse, though.  Haylee snuck her mask off long enough to get her face painted like a cheetah :)

Cheetah head...

Cheetah face!

Haylee Kate and Minnie Mouse

Colleen came in to feel Haylee's port.  She went ahead and ordered an X-ray just to make sure it hadn't flipped over and that's why they couldn't get it accessed yesterday.  Colleen figured that since it didn't go in correctly on the first poke, the additional pressing and moving it around and around irritated the tissue under the skin and around the port.  She agreed to leave Haylee unaccessed to let it heal.  Dr. Cooper came in and just checked her out.  He likes to see Haylee and is really good with her.  At the same time, he's done having to treat her inpatient!  He said since she's got a few monocytes today that tomorrow should tell which way the counts are going to go.  I said that right now those monocytes mean nothing to me until I see tomorrow's counts.  He agreed. 
Haylee and I headed down to The Voice for a bit before Adam and Mason got here for dinner.  Wendy (she runs The Voice and also used to fill in as a DJ on the weekends on Star 94) was showing her how run the show and man the controls - and she had a good time doing it!  While I was sitting down there, Dr. Cooper found me to let me know that the X-ray was fine and the port is facing the correct way - whew, what a relief.  He let me know that Colleen put in the orders for Lab to come in and poke Haylee's fingers for blood until further notice. 
Adam and Mason showed up for dinner - we always enjoy their visits.  I miss my little dude everyday :(  Haylee gave Mason and Adam all the stuff she made for them so far this week.  Mason was so excited!  We ate dinner, the kids played in the room for a while, we went down to the garden for them to throw pennies in the fountains, and they played ball. 
Since Haylee isn't accessed, she was able to take a shower - she loved it!  We both relaxed for the rest of the night.  We love when there's no drama :)

WBC - 1520
HGB - 12.5
Platelets - 71k
ANC & SEGs - 0
Lymphs - 97
Atypical - 1
Monocytes - 2......

6/26/12 - More visitors, Camp Sunshine fun, and a bad afternoon

Meth, Abby, and Jasmine came to visit!  They were able to join Haylee for Camp Sunshine fun like digging for shells, making nametags, snake painting, fishing and other fun things.  The clowns found them and the girls were having a good time hiding Dr. Squeeze's juggling rings from him.  Adam dropped in for a visit as well and we all had lunch together before everyone had to leave.  We walked down with Meth and the girls, wandered around the gift shop for a minute and the girls had to have their pictures made with the giant giraffe...haha!  It was a very nice visit - the girls had a great time together.

Abby Star, Haylee Kate, and Jasmine Skye



Jasmine and Haylee playing with the clowns



Abby, Haylee, Giant Giraffe, and Jas (who is also sporting her 'Camp Sunshine 2 U' shirt)

Haylee made it back upstairs just in time for BINGO with the Camp Sunshine crew.  Haylee came back with a 4th of July baton and headbands and a harmonica.  Brit came in to put the EMLA on Haylee's port because....it's Port Access Tuesday.  Brit wanted Haylee to try on her headbands but Haylee would only do it if Brit wore one and let me take a picture....

Brit and Haylee sporting their USA support

I'm not going to go through the motions of everything that happened but needless to say, after TWO tries, the port wasn't accessed.  Brit tried first, with no luck.  She actually wasn't able to get the needle in the port and Haylee had fluid on and around her port so the entire port area was a little swollen.  Rebecca came in to try a 2nd time and she almost got it but for whatever reason it just wouldn't work.  They left her unaccessed until tomorrow to see what the doctors wanted to do.  Counts tonight will have to be done by finger prick and she's OK with that (anything to not have to try a 3rd time.  All of it took from 5:30-7:45pm).
After the drama of the evening, she was in a pretty good mood.  She bounces back quickly from tramatic experiences. 

Nothing new from the docs - just waiting.

WBC - 2100
HGB - 12
Platelets - 93k
ANC - 0
SEGs - 0
Lymphs - 98
Atypical - 2 (what are they gonna be?)

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/25/12 - Camp Sunshine came to Haylee! (and the other kids on the floor)

Haylee fishing with magnets

Since there are many children here on the floor that aren't able to make it to summer camp with Camp Sunshine this year, like Haylee....Camp Sunshine came to them!  They will be here everyday this week to do fun things with the kids.  Today, they had a bracelet making station (I made a bracelet for Haylee), ring toss (that Haylee stayed at mostly), fishing for magnetized fish, a name tag making table, and a place to make their own 'sunshine'.  Haylee wanted to play the games mostly, but she sat down and dabbled in some art for a little bit.  Later in the day, 'Mr. Tone' the Magician put on a show for them filled with magic and laughter.  Haylee even brought her 'magic handkerchief' and did a bit of magic herself.  I let her do everything by herself with the 'camp counselors' so she was at least on her own like she would be if she were at camp.

Magic show with Mr. Tone

Nonna and PawPaw came to visit today since they're both on vacation this week.  When they left, Haylee and I hung out in the room for most of the afternoon.  All of the excitement happened this morning! 

Dr. Cooper came by this morning to check in - no changes, just waiting.  Haylee's platelets were below 10k so she had to get a unit of platelets today.  He put a positive spin on her counts for me today.  As of today's counts, Haylee has 4% atypical cells, which are cells that the bone marrow hasn't quite decided what it wants them to be yet.  They could turn into monocytes, SEGs, neutrophils, lymphocytes or another type of cell.  We are all hopeful, crossing our fingers, and praying they turn into monocytes since they are the first cells to come back when counts rise.  We'll see.  I'm not getting my hopes up.  I'm tired of doing that and getting my hopes shot down. 

WBC - 2470

HGB - 12.8

Platelets - <10k (makes me wonder how low they really were)

ANC - 0

SEGs - 0

Lymphocytes - 96

Atypical cells - 4 (fingers crossed they're something good!)

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/23-6/24/12 - Weekend #3 (and hopefully the last)

Saturday

The therapy dogs came to visit today.  Haylee liked Loki, the black Pomeranian.  She said he was cuter than Nonna and PawPaw's Sadee Jane...hard to believe! 

Haylee and Loki

Looks like Beethoven!

They weren't really too busy and nothing else was going on.  Today's counts were promising...if they stay up, she could go home by Monday or Tuesday!

WBC - 2320
HGB - 12.2
Platelets - 26k
ANC - 20
SEGs - 1
Lymphocytes - 99


Sunday

There was a carnival downstairs in the classrooms hosted by One Heart One Love Foundation with carnival games and arts and crafts for the kids to do.  They got tickets and were able to exchange them for prizes.  They could play the games as many times as they wanted and get as many tickets as they wanted.  Adam, Mason, and I got there just in time to be able to go down with Haylee and Nonna.  The kids had a good time :)
Counts went back down.  No chance of going home before mid-week at the absolute earliest (and that's if counts start coming in by Monday). 

WBC - 2480
HGB - 12.7
Platelets - 15k
ANC - 0
SEGs - 0
Lymphocytes - 100 :(

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/22/12 - Queen for a Day, a mystery guest, and saying good-bye to Lindsay

Haylee had a busy day today.  The doctors came by to let me know that Haylee's hemoglobin was below 8 so she was going to get 2 units of blood this afternoon.  That'll take a while.... :(
Volunteers brought a flyer by today about a King/Queen for a Day going on complete with makeup applications, manicures, ice cream sundaes, smoothies, and also things for boys to do.  Haylee didn't do the makeup (since she reacts to everything) so she just let them paint her nails, had ice cream, a smoothie, and decorated a cookie. 

Gold nails with blue glitter :)

Haylee's mystery guests showed up at the start of the King/Queen for a Day event - Taylor, Sydnee, and Chad!  Haylee and Taylor were BFF when they were 3 and up until Taylor moved about an hour away.  She was trying to guess Thursday night who was coming to visit but wasn't able to guess.  Haylee and Taylor raided the ice cream and smoothie stands in the playroom, bounced around all over the place, and played games.  They haven't seen each other since Haylee's birthday in February and the visit was much
welcomed :)

Haylee and Taylor :)

Haylee and Taylor playing 'Headbands - Disney version'. 

 All the excitement died down around 4pm.  Lindsay came in just before 5pm to say her final good-byes to Haylee (she made Haylee her last stop and gave extra time for good-byes).  We are really going to miss her around here.  She had this really great connection with Haylee that none of the other child life specialists have with her.  Lindsay was by far Haylee's favorite person to see at the hospital (besides the clowns on Tuesdays and Fridays in clinic and Wednesdays on inpatient).  She helped Haylee through lots of rough patches, helped to keep her calm when necessary, entertained her, and made her smile when she needed it most.  Best of luck to Lindsay as she makes her move back to Texas - we will miss you dearly.

Haylee and Lindsay :)

Nonna showed up about 7:15pm and I went home for the weekend.  Counts are still zero but maybe that'll change over the weekend. 

WBC - 2400
HBG -  7.9
Platelets - 38k
ANC - 30
Lymphocytes - 100 :(


The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help!  If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/21/12 - Lillybands and Haylee brought smiles today

We had a boring morning.  It's really hard to get up and around after viewing the daily counts and they aren't what I hoped they would be.  Kelly came in and had nothing new to report.  She said that her overall WBC count is good but the immunity part of it is missing.  Fingers crossed it'll all happen soon and we can go home by Tuesday! 
Haylee and another girl from the floor went downstairs to be interviewed by HLN regarding 'Lillybands', an organization that makes headbands for baby girls, little girls, teen girls, and women as well as 'Ninjabands' for boys and men.  They don't hurt like a regular headband and are soft for comfort.  They donate the bands to hospitals as a sort of treat for the kids.  Haylee and Beth sat in the lobby in front of about 25 kids along with about 10 adults (all wearing Lillybands or Ninjabands), a camera crew, and a reporter.  The girls answered questions from the kids and adults about themselves - both related and non related to their cancers.  Some of the questions were "does cancer hurt?" and "what's it like to have cancer?" and some were "what's your favorite color?" and "what's your favorite sport?" and "what do you like to do for fun?".  The kids there were very nice and loved talking to Haylee and Beth.  After the Q & A, the Lillyband creator, Jen, gave the girls 4 big baskets full of Lillybands and Ninjabands to give out to patients and nurses on their floor.  Beth ended up doing the sit down interview with her mom and the reporter (and I was glad cause I wasn't dressed or prepared for that!).  We took 2 of the big baskets back upstairs with us along with some of the women's bands and Haylee gave those out to the AFLAC nurses.  She even got one of the male doctors to wear a Ninjaband!

Q & A with the Lillyband kids

Answering questions

Camera right in her face

More questions



Haylee and a few of the nurses (and 1 doctor) with the Lillybands

 After the Lillyband excitement, we chilled in the room for a bit then went to BINGO - the most exciting part of our week.  Haylee won herself a clown nose (for when the clowns visit), an Aqua Pets, and Moon Dough.  She wanted the American Girl doll but that was taken quickly. 
We had a chill rest of the night.  The night nurse, Cameron, made her laugh hysterically by teaching her some old school dance moves...The Shopping Cart, The Fisherman, The Sprinkler, and The Cowgirl.  It's been a long time since I've seen those!!  

WBC - 2390
HGB - 8 (holding steady!)
Platelets - 55k
ANC - 0 (automated ANC said 50 which is an improvement since it said 0 the past 2 days; manual ANC said 0 which is what the docs go by)
SEGs - 0
Lymphocytes - 100 :(

6/20/12 - Lindsay time, a new friend, and washing away sadness

Again, we slept in until 10am this morning.  We were up and around for about 45 minutes when Dr. Pucci and Dr. Daisy made their weekly appearance.  They were tossing tissues around the room, playing tug-o-war with his guitar and confusing Dr. Daisy.  They really get her laughing pretty good when they visit so if I minded the clowns before, I don't now :)
Lindsay dropped by around 12:30pm and took Haylee out and about for a while, just because.  Her last day is Friday and I think Lindsay is soaking up as much time with Haylee as she can.  Plus, she turned Layne loose on clinic today all by herself to get used to it.  They were back about 1:45pm, then Haylee and I headed downstairs for the 'Peter Pan' performance.  The group ended up running late so we killed some time and shopped in the gift shop.  She bought herself a stuffy and bought Mason one, too (both with her own money she earned from port accesses).  A boy about Haylee's age came in the gift shop with a cast/boot on his leg and knocked something over, making a little mess, and Haylee helped him clean it up.  As Haylee was at the register paying for her stuff, the boy's mom asked me if she was my daughter and I said yes.  She said that the boy (whose name is Dalton) wanted to buy her a teddy bear that was holding a cloud that says 'Believe' and asked if it was OK.  They bought it and Dalton gave it to her.  We ended up exchanging addresses so that Haylee and Dalton could be pen pals.  Turns out Dalton has been sick most of his life and has a port as well.  Usually, they go to Scottish Rite for his medical needs but they were at Egleston today for a bone scan (and have never been to Egleston before).  Having a pen pal, especially one that goes through some of the same stuff as her, will be good for Haylee to have.  It's funny how people meet and things work out!!  I was texting with Dalton's mom tonight and he already wrote Haylee a letter.  They're putting it in the mail tomorrow.  How cute is he!  I told Haylee his letter will be coming in the next few days and she got so excited - she loves getting mail!
Finally, the 'Peter Pan' group showed up and did their performance.  The songs were all a Capella, there were no props, and they worked in a small area.  The performers all had costumes, but that was it.   It was cute and they did a good job.  The hospital gave out 'Tinkerbell' tutus and superhero capes to go along with the performance.  Haylee got one for herself and grabbed one for her BFF, Savannah, too!   

So cute in her tutu!

We headed back upstairs and Lindsay showed up again to take Haylee away for about 30 minutes.  They went snooping in the Volunteer Services 'Magic Closet' for something to do.  She came back with her very own Sand Art.  One of them was a butterfly and she made it for Lindsay as a going away present as well as a 'Hope for Haylee' bracelet.  We hope she likes it!
Adam and Mason came for dinner and a visit.  Haylee gave Mason his stuffed animal and he really liked it.  After dinner, we all went down to the garden so the kids could play and spend time together.  It was a nice visit.  It's always hard when they leave cause we just want to go with them. 
Normal routine as usual but we added in Justin Bieber's 'Around the World' NBC show to the mix.  She loved it!  It's on tomorrow, too, so I imagine we will be watching it as well.

The JB record she got from Wendy at The Voice

We love The Beebs!

 A conversation started by her saying she thought I was a wonderful mother and that she's not always the best daughter because she's mean to me sometimes.  I told her that she was the absolute best daughter and she's just acting like a 9 year old acts and that I may not like how she acts all the time but that I still think she's the best no matter what she does or how she acts.  She said she's been sad for the past few days because she misses her family and friends and is just done being at the hospital.  Ironically, I've been feeling the same way the past few days.  I told her that we were almost done with the hospital stays and that we've got each other to lean on while we're here.  I also asked her to please not hold back how she's feeling from me and that she could tell me anything.  She said she just didn't want to make me sad and that's why she didn't say anything.  I told her it made me sad that she didn't say anything so we could work through it together.  She said she would start telling me and that she wasn't sad anymore since we talked about things and that the only thing she was sad about now was that Lindsay was leaving :(  I'm glad she told me and we got it all out in the open.  She was back to Happy-Go-Lucky Haylee when she went to bed. 

No changes in counts - no changes in anything!  Haylee still feels good and acts fine.  She started the Vori today...so far, so good. 

WBC - 2030
HGB - 8 (if this drops anymore, she'll get a blood transfusion...let's hope not!)
Platlets - 73k
ANC - 0
SEGs - 0
Lymphs - 98 (this needs to start coming down)

The fundraiser is still going on!!  We really would like to reach at least half of our goal to ensure that all of our financial obligations can be taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help!  If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/19/12 - Today's counts and re-accessing day

Haylee was de-accessed this morning with a little drama but not too much.  She was hoping she wouldn't have to be re-accessed and it's an option but she would have to have either her finger pricked or blood drawn from her arm everyday....she said re-accessing would be better.  Leah came in to de-access and Haylee put it in her head that it would hurt.  When it finally came out, she said 'Ow' but I don't think it's as bad as she makes it out to be.  I believe it's probably uncomfortable pressure, but not painful.   
The therapy dogs came to visit this morning - Haylee loves their visits.  We saw Dooley, the Golden Retriever (who is a cancer survivor), Finley who was a big hairy dog of some kind, and Go-Go, the Welsh Corgi.  All the dogs who visit are so sweet and just sit there and let all the kids pet and love on them.  I think they secretly enjoy it!
I asked Leah if Haylee was allowed to take a walk along the outside perimeter of the hospital (its a 3/4 mile path) and she said that as long as she wore her mask, stayed on the sidewalk, and behaved it should be fine but that she would deny ever saying it was alright if asked :)  So...we went for a walk!  We didn't walk along the entire path but we walked probably 1/2 mile of it.  There is construction going on the back side of the hospital which would cause us to cross the street and I didn't want to take any chances near the construction.   Halfway through, she started complaining but I made her push through.  I told her it was going to become a daily thing and to get used to it.  It gets us out and away from within the hospital walls.  I liked it but I can't say Haylee did (LOL). 
The doctors came in to say that counts finally hit bottom - no ANC, no SEGs.  Up is the only direction to go now.  Everything else looks good with her.  If counts would hurry up and rise, we could be outta here!
Haylee played in the playroom for a little bit then I made her come back to take a shower (she takes baths everyday but can only shower once a week when she's de-accessed) and to enjoy that shower since she has to wait a week to do it again!  She stayed in the shower for almost 30 minutes!  She said she was playing in the water and taking her time.  More power to her!!!  Haylee started 2 summer reading programs today - one through Barnes and Noble and one through Chuck E Cheese.  She reads for at least an hour everyday.  It gets her away from the electronics and keeps her reading through the summer. 
Amanda (today's day nurse) came in to give her her antibiotic, check her vitals, and apply the EMLA cream at 4pm today.  Danielle came in right at 5pm to help set her mind right with the re-access.  By 5:15pm, Amanda and Leah came in to do the access.  Out of all the actual accesses, today was the best by far (aside from the fact that once Leah did the access, the needle hit the metal side of the port and she had to maneuver the needle to the right spot and with the pressure and pushing, it was hurting Haylee).  She earned herself more money and another stuffed animal from the gift shop.  I was so proud of my girl today!!  I can't (and don't) expect her to just lay there and let them access her willingly with no emotions.  This is a grown-up thing she's going through at 9 years old.  She's doing fantastic and handling everything much better than most kids, even most adults.  If she can keep still, keep her hands down and away from the site, not argue and fight with us (too much anyway), and keep the crying to a dull roar....that's perfect to me.  That's exactly what she did today :)
After the access, she acted like she was a little mad at Leah at how the access went.  Leah apologized to her and let her know she would never hurt her intentionally.  Haylee kind of nodded and kept mum (she was still emotional from the access).  Danielle took Haylee down to The Voice to visit with Ms. Wendy (the DJ) and to make her feel better.  She came back with an actual record (yes, a record!!) with 2 Justin Bieber singles on it.  Apparently, the records were sent from Bieber's people and aren't being given out until January when he does his show here.  I think the hospital is still trying to get him to come for a visit.  Haylee was so excited!  She showed all the nurses up here, especially Linnea, who makes it a point to talk about The Beebs with her.  The night receptionist, Nicole, showed Haylee that her picture with Gavin Degraw was on the hospital staff's home screen for CHOA (where they go for information, to clock in, or anything else staff related).  Jill had told us last night and a few nurses told us through out the day today, but Nicole actually showed us.  It's neat to know that every staff member in the hospital sees Haylee and Gavin Degraw when they clock in everyday!
We went downstairs and got her stuffed animal that she wanted.  She found it in the gift shop yesterday and hid it behind other stuffed animals because it was the last one and she didn't want anyone else to get it!  Haha!  I've done that with clothes before!  We came back upstairs and had dinner then she went to the playroom to play the Wii for a bit.  Leah went in to apologize to her again for today and Haylee told her she was never mad at her and that she knew Leah would never hurt her on purpose.  Haylee and Leah are buddies :) 
The day ended up being a good one - not a lot going on but plenty at the same time. 

WBC - 1830
HGB - 8.5
Platelets - 100k
ANC - 0
SEGs - 0

The fundraiser is still going on!!  We really would like to reach at least half of our goal to ensure that all of our financial obligations can be taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help!  If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/18/12 - Day 14

There wasn't much going on today.  The doctors were in this morning and since today is the last day of ATRA for this cycle, Haylee can start the Vori anti-fungal either Tuesday or Wednesday.  Counts dropped from yesterday...and the yo-yo pattern begins.  Basically, all that's keeping us here now is counts.  They haven't dropped all the way to zero but they still could.  They could also go up from here.  Below are count comparisons from last admission to this one:

Last Admission                                                  Current Admission
1-Counts began dropping on Day 13                   Counts began dropping on Day 11
2-Counts dropped all the way to zero                  Counts have not dropped to zero yet (if they even will)
3-Counts began to rise on Day 19                       Not sure when counts will rise...counts are in a yo-yo
and was told that day we could go home                    pattern for now
 by Day 21 (and we did)

If these counts follow the pattern of last admission's counts, then counts should start rising by Day 17 (which is Thursday) and we should be out of here by Sunday or Monday.  All hypothetically speaking of course.....I don't hold high hopes of that happening.  I do, however, hold high hopes of being discharged next week.  Counts are SO frustrating!! 

Haylee spent some time with Lindsay and Layne in the playroom today.  They must have gotten a group together because Haylee met another little girl who had a DS and Mario Kart so Haylee came to grab her DS so they could connect and play together.  When I went to get her at 2:30pm (she had been in the playroom for almost 3 hours), Haylee and the other girl were sprawled out on bean bag chairs playing Mario Kart.  It was cute :)
There was a presentation from Zoo Atlanta going on today at 4pm, so before it started we went to get candy from the gift shop and spend some time in the garden just to get out.  The walls start closing in on you if you don't make a break for it every now and then.  We got front row seats for the animal presentation.  Cousteau the Hedgehog was back for a visit along with Dean Martin and Humphrey Bogart of the Norweigan 'Rat Pack' and Pumpernickel the Cottontail Bunny. 

Cousteau the Hedgehog

Dean Martin from the zoo's Norweigian Rat Pack

Pumpernickel the Bunny

Normal evening routine once we went back upstairs.  Haylee's going to start a summer reading program tomorrow.  It's a good incentive to get her off the electronics for a while.  I did some research for low cost, kid friendly things to do once Haylee's been discharged.  I've got to make the time counts are fully recovering fun since she's going to miss camp this year.   I did find some cool things to do and told her about them.  She seemed excited.  If anyone has any other ideas, let me know!

WBC - 2230
HGB - 8.6
Platelets - 132k
ANC - 160
SEGs - 7

Today's counts are very similar to Saturday's counts except the platelets. 

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/15-6/17/12 - Weekend #2 - A change in counts and a naughty clown visit!

Happy Father's Day to all the fathers out there (especially to my Daddy) and to Adam, who has been there going through everything with us and who we couldn't be without. 

Friday

Nothing happening today :(  Slow, boring days like this really make it hard at the hospital.  We found out some sad news...Lindsay, our most favorite Child Life Specialist, is moving back to Texas.  Her last day is next Friday.  She has been training a new CLS, Layne, who will be who Haylee sees in clinic when she starts maintenance.  I imagine we will be seeing a lot of Lindsay next week since she said she has to soak up as much time with Haylee as possible in a week (I think Lindsay is just as fond of Haylee as Haylee is of her). 
We headed downstairs to the library for daily personal time.  Lindsay and Layne came to find Haylee to take her on a photo scavenger hunt throughout the hospital.  It gave Haylee the opportunity to interact with Layne and spend some time with Lindsay.  Haylee went with Lindsay and Layne to meet their boss (whose name is also Lindsay).  Boss Lindsay liked Haylee's fashion statement with the Lillybands wrapped around her ankles like anklets so Haylee is going to participate in the HLN story about the people who make Lillybands next Thursday (yes, she's going to be on TV again). 
Nonna showed up around 7:30pm to stay with Haylee for the weekend.  I'm excited to get some much needed time in with my men (but I'll miss Haylee all in the same). 

WBC - 1990
HGB - 9.2
Platelets - 29k
ANC - 380
SEGs - 19

YAY!!  COUNTS ARE DROPPING!!

Saturday

Haylee and Nonna went downstairs for an early game of BINGO.  Haylee was able to get Tinkerbell/Fairy dolls with every win and Nonna played to win things for Mason. 
On their way down, Dr. Pucci was making his rounds on the floor.  Him and Haylee get excited to see each other.  He asked Haylee if she had ever been TP'ed.....Nonna thought there was no way he would do something like that....well......

Surprise....!

The clowns have struck and blamed the mess on Cowie!

A web of TP!

Payback time....

Haylee had her room TP'ed by the clowns and they tried to blame it on Cowie!  Naughty clowns!  Leah , the charge nurse, said they needed some payback and got Haylee a giant syringe (the ones they use to administer IV antibiotics) to fill up with water so she could squirt them when they came back to see her reaction.  Too funny!
Later on, Haylee and Nonna were racing down the stairs and Haylee fell down a few of the stairs.  She wasn't hurt any worse than a bruise on her knee but since she was low on platelets, I'm sure it looked worse than it really was.  She didn't even cry!

WBC - 2190
HGB - 9.2
Platelets - 19k
ANC - 150
SEGs - 7


Sunday

Haylee wanted to be lazy today so she stayed in bed and played her DS for most of the day.  The doctors came in and checked on her knee - just a bump and a bruise.  Her platelet count dropped to 10k so they gave her a good sized bag of platelets to replenish.  She was given Benadryl for pre-med but didn't fall asleep.  She said she got tired but stayed awake. 
For Father's Day, Haylee made Adam a coffee cup and a duct tape wallet (which was actually really neat).  She wanted him to empty his current wallet and use the one she made but its huge and has animal print on it (hehe!).  Danielle came in and showed Haylee, Nonna, and Mason how to make duct tape flowers to go on pens.  A neat idea!  Danielle also caught Haylee up on her Beads of Courage and she now has 4 strands to show off :)
Haylee and Mason played ball in the garden with Nonna and threw pennies in the wishing wells in the garden.  They left around 5pm and Haylee and I headed upstairs to chill for the rest of the night.  She went into the playroom with a volunteer for a little bit then came back for a bath and bed. 

WBC - 2290
HGB - 9
Platelets - 10k
ANC - 210 (could counts be on the rise??  tomorrow should tell for sure.)
SEGs - 9
Monocytes - 2 (there weren't any Friday or Saturday)

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/14/12 - Easily frustrated (at each other and blood counts) but all in all, we had a good day :)

Haylee and I slept pretty good and she even woke up before me!  That's a first out of our entire time here!  I would close my eyes and Haylee would ask my why I was going back to sleep.  When she's awake, she wants me awake too but when I'm awake, I'm supposed to let her sleep!  Ah, kids.  I see where my parents were coming from now (hehe!). 
I think a full week together...alll day and all night have really started to try our patience with each other.  Haylee was doing things that was getting under my skin (more so today, I think) and I would say something to her about it and she would get snippy, which then made me mad and I would get snippy back and so on....it's a vicious cycle.  Finally, I would breathe in and out, just quit speaking for a little bit, and gather up my emergency supply of patience.  Haylee's not sure what to do when I quit speaking so she waits a little bit, apologizes, and then we're all better.  By Thursdays, I'm ready for the weekend but by Saturday afternoon I miss her.  We're dealing with this together.  The walls are closing in on both of us, there's only so much we can do and only so many places we can go.  Sometimes, Haylee just doesn't make it easy, either.  She gets crazy and silly and there's only so much of that you can take, she gets bored, she gets sassy...it all wears on you when you're trying to keep your patience. 
We made a Butterfinger Cake today for something different to do.  Since Haylee is on a fat restricted diet, we made it as low fat as possible using Diet Coke with the cake mix instead of the box directions and fat free cool whip.  Haylee and I had a small piece, we cut a piece for Lindsay (her and I have been talking about it for over a week now), and gave the rest to the nurses.  Our nurse, Krystal, snagged her a piece and said it was going fast!  She said it was so yummy!!
We went down for our daily library visit.  Haylee really enjoys the computer game time she gets and I enjoy my treadmill time.  I also catch up on my magazine reading :)  The were having 'Legos in the Library' this week, but we got down there when it was almost over and there wasn't hardly anything left.  Haylee wasn't heartbroken over it. 
We got back upstairs (about 4pm) and Krystal told us that Colleen and Kelly (the PA's) had been looking everywhere for us!  Kelly said she almost sent a hospital wide announcement for us to return to our room...oops!!  They knew we were out and about (they know us pretty well) but Haylee was also their last patient of the day.  No changes still and counts still aren't dropping.  I went back and looked at last admission to see when counts dropped and it was about Day 13 (which will be Sunday...today is Day 10).  I hoped to see counts drop sooner but they didn't.  Hopefully in the next few days they'll drop.  I guess it's possible they just won't drop...and I'm OK with that too, if it means us getting out of here sooner and Haylee being able to go to camp!
BINGO was tonight - she won fingernail polish, glow in the dark solar system for her ceiling at home, and the board game 'Life'.  BINGO is always fun!  The patients and their siblings are the only ones supposed to participate but some parents take advantage of the 'everyone wins' rule and use it to rack up on free stuff.  It's sad...they're taking away from another child next time.
CURE fed us Chik-Fil-A tonight...yum!  Our night was as routine as all other nights - dinner, bath, Skype with Adam and Mason, a little TV, and bed. 

WBC - 2140
HGB - 9.0 (unless this goes up on its own or stays above 8, she will have to have a transfusion)
Platelets - 43k (she'll probably have to have a transfusion by this weekend)
ANC - 830
SEGs - 39

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/13/12 - We met Gavin Degraw at The Voice!!

We had a pretty low key morning - both of us slept in later than we wanted to.  Adam showed up just before noon for a quick visit while he was down this way.  He can't always stay long but he does his best to be here everyday :)
Danielle from Child Life came by around 12:15pm to see if we were going to head down to meet Gavin Degraw.  Of course!!!  We got down there about 12:30pm just to make sure we had a good seat and Haylee wanted to be sure she got a seat at a microphone. 
While we were waiting for Gavin to show up, Haylee fished questions out of the 'Fishbowl of Questions' to ask him.  She picked 4.  If it were up to Haylee, she would've asked him the entire fishbowl (haha!)  Also while we were waiting, Connie Seacrest (yes, Ryan Seacrest's mom) was there as well and we met her.  She was very nice.  She talked with Haylee about how Gavin Degraw liked to wear hats and they made a bet to see if he would wear one (Haylee said he would).
Gavin Degraw showed up around 1:15pm.  Colbie Calliet was supposed to come but since she wasn't feeling well, she decided to stay back and rest for their show tonight at Chastain.  Haylee won the bet with Connie Seacrest, who very sweetly pointed out to Haylee that she won, because Gavin did show up wearing a hat.  He was a very chatty and very nice guy!  He went on and on during his interview, talking and laughing, and making everyone else laugh.  He sang 2 songs, "Chariot" and "Not Over You" and gave out free CD's of his latest album (which he also signed for Haylee).  He was just a very genuine person...not many celebrities are like that these days (such as when we met Cody Simpson...he seemed very lost and uneasy.  Nice kid, though.).  Apparently, he is big into the Beads of Courage Program and handed out music notes to all the patients to add to their necklaces.  Again, a very sweet and genuine person. 

Gavin Degraw's interview at The Voice

Answering questions from Haylee such as..."Do you have a hidden talent?"  Answer:  After doing DWTS, he found out he was flexible.

"What's your favorite Disney movie?"  Answer: Secretariat....so much so he went and bought the movie along with movie memorabilia.

"If you could be any cartoon character, who would you be?"  Answer:  Bugs Bunny, cause he's a prankster! 

A genuine smile from Gavin Degraw :)

I guess he was thinking...? 

Gavin Degraw and Haylee Kate :)

The doctors found us when we got back...2 hours later.  They waited patiently for us.  They know Haylee doesn't stay in her room if she feels fine and doesn't have to!  No new changes...she still looks good.  Counts went up again, although platelets went down.  Even Kathy, the PA, said she was surprised.  She's only at Day 9 so it's still a little early to tell what her counts are going to do.  We'll just keep an eye on them.  Maybe she could be one of those few kids whose counts don't drop.  If her counts go up again tomorrow, I'm just going to ask them to send us home (haha!  I can always wish!)!!

We headed down to the library and fitness room for our own personal time.  Haylee likes the library because she can play games, play on their Ipads and look at books (she mostly plays computer games). 

The rest of the night was pretty routine:  dinner, bath, Skype with Adam and Mason, a little TV, then bed.  Bed was earlier tonight...9:30pm.

Tuesday's Counts                                                    Wednesday's Counts
WBC - 1970                                                            WBC - 2130
HGB - 10.3                                                              HGB - 9.7
Platelets - 94k                                                           Platelets - 66k
ANC - 710                                                               ANC - 920
SEGs - 36                                                                 SEGs - 43

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

6/12/12 - Pretty popular today :)

We slept in...as usual again this morning.  It's such a struggle getting up when you're in a hospital (for both of us!).  I always hope Haylee wakes up before me...waking Haylee is like waking a hibernating bear.  It's almost dangerous.  You never know what she's gonna do!
Katy (day nurse) de-accessed Haylee after she woke up a little.  De-accessing isn't as stressful.  It's uncomfortable, but not painful (there's just a lot of pressure pulling the needle out).  She was finally free for a few hours!!!  She chose to be re-accessed at 5pm - EMLA to be put on at 4pm.  There was nothing pending for her to need to be accessed any earlier.  If she didn't need to have counts drawn daily, she wouldn't need to be accessed at all. 
A camera crew was on the floor today filming video for a annual fundraiser and asked to film patients in their rooms.  A few nurses nominated Haylee to be one of the patients - she's well known for her 'celebrity' status and bubbling personality :)  There was no audio with it so they just filmed her coloring a mask she got from the art cart and playing her DS.  While I was talking to someone from the foundation, Haylee started talking with the camera man, Raz, and it turns out he knows one of the stars of 'Sonny with a Chance', 'So Random', and 'Snap' (all on Disney channel) so Raz called up Doug Brochu (pictured below) so he could talk to Haylee!!! (If you're not familiar with the shows, you won't know who he is.)  She was so giggly talking to him!  He did most of the talking but she did talk back some.  It was so neat for her to be able to talk with a celebrity she knows on the phone!!  I hope she doesn't clam up when it comes time to meet
'The Beebs'!!!

The hospital's 'Fairy Godmother' came by after the camera crew left with her cart of books.  She is 90 years old and still volunteers at the hospital, dressed up in her pretty pink dress, everyday.  She's only supposed to let patients take 1 book but she said since Haylee was a 'celebrity', she could have 3!  Love the Fairy Godmother!
The doctors came by and let me know that since Haylee is allergic to both anti-fungals they normally give as a precaution, they decided not to try further and will start her on the oral anti-fungal (that she's not allergic to) next Wednesday.  Whew!  Bullet dodged!  Since her counts are still consistent, she may not make it to Camp Sunshine Summer Camp this year.  She's aware it's a possibility but that doesn't mean she has to like it.  We're saying prayers and keeping our fingers crossed that she's able to go but the doctors don't think it's going to happen this year :(
CURE came by and fed the floor for lunch.  Haylee and I ate lunch and chilled in the room until 1:30pm.  On the 2nd floor, there are many family amenities including....a treadmill!!  The family library is also on the 2nd floor which is across the hall from the 'fitness room' where Haylee was able to hang out and play computer games while I got some personal treadmill time.  She came to hang out with me the last 10 minutes of my time.  She really wanted to ride the stationary bike but patients aren't allowed. 
There was an art party going on downstairs that was making their own t-shirts but she didn't wanna do it.  She gets tired of arts and crafts all the time.  You can only do so much and unless it's something extraordinarily great...Haylee isn't game. 
Katy came in around 4:15pm to apply the EMLA and then read a book for a while (shocking, I know but I made her!).  Adam and Mason showed up for dinner right about the time it was time to re-access her so they waited in the family room.  Haylee did well - it wasn't the best she's ever done but I've seen much worse.  She cried some and was scared - and all that is OK - she tried super hard keeping her hand away from the site and stalled a little to long but followed directions after all countdowns.  She really knows how to work herself up and make herself scared.  All the things she was working for...money from Nonna, the bunny from Lindsay, and gift shop shopping from me...she got it :) :) :)  Like I said, I'm willing to give in as long as she tries.  I'm not expecting a flawless port access (I mean, it would be nice but it's not happening any time soon!). 
Our dinner with Adam and Mason was good!  They brought us Subway...yum!  The kids played in the room for a bit, we took them to the garden where they threw pennies in the wishing wells, filled a fountain with flowers and leaves, and ran around and played.  It was nice having them together again.  Adam said Mason talked about Haylee the whole ride down.  He misses her :(
We went back upstairs and she went to the playroom to play.  That's her way of letting me know that she needs her own time.  I'm OK with that.  We both need it.  I received a phone call from Haylee's cabin counselor from camp and we talked about Haylee coming or not.  What makes it so much worse if she can't go is that all 4 girls in her cabin are first time campers, the cabin counselor is child life from Scottish Rite, and Leah (our favorite charge nurse) is their cabin nurse.  Fingers crossed, fingers crossed!!!