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 :(