Monday, March 28, 2011

Vacation Post Break...for a Cami Update!

I know this is a little late, but I want to post it so I can keep track.  The day after we got home from our trip, Cami had clinic.  We had to get in there ASAP because she is supposed to get chemo every 4 weeks.  That 4th week fell right while we were in Florida, so they pushed her chemo to week 5.  Other than a little sun rash she got on her face, everything looked great! 

Clinic stats 3/10/11:
Height: 108

Weight: 18.4kg (40.5 lbs.)

ANC: 3,100
WBC: 3.6
Hematocrit: 32.3%
Platelets: 205

That was a few weeks ago, now on to the present...

Little Cami has had a pretty rough weekend.  Thursday was Pats birthday (Happy Birthday Pat!) so we went out with some friends to celebrate.

 When we got home, Cami had a temperature of 99.8.  I knew what was coming so I started checking her temperature every 30 minutes.  Sure enough a couple hours later her fever had spiked to 102.8.  So at 1AM we packed up and headed to the (dreaded) ER.  They rushed us back, accessed her port, took a blood sample, started fluids and rocephin (an antibiotic), and made sure to collect our $200 co-pay (eeek!).  This is the standard drill with EVERY fever she gets.  Lucky for us her blood levels came back high enough so after 4 hours in the ER they let us come home, where we'd be allowed to give her tylenol for 24 hours.  If her ANC (ability to fight infection) would have been too low, they would have admitted her. 
3/25/11 CBC results:
WBC: 4.1
HCT: 32.2%
PLTS: 239
ANC: 3,400

Here she is getting her fluids and antibiotic.

We got home that night at 5AM and after catching up on sleep all of Friday and Saturday she seemed to be feeling better (except for a cough).  Saturday when we thought she was playing in the playroom, we found her just laying there with all her stuffed animals.  We started to realize she still wasn't feeling so hot, but we were able to keep her comfortable for the next 24 hours with some tylenol.

 Sure enough, as that Tylenol wore off that fever was back!  
So... Saturday night it was back to the ER for us.  This time they did more tests to try and figure out exactly why she was getting a fever.  They did the "cancer-kid fever protocol" CBC, IV fluids and rocephin (antibiotic).  They also did a chest X-ray, and a VRP (nose swab to test for virus).  

Cami has become a pro at playing Doctor.  She took care of sick Froggy all night.  

Although her levels had dropped by almost half (her ANC was 1,300), they were still high enough to let us go home...YAY!

The last 2 days her fever has stayed away (thank heavens).  Today clinic called and told me that her nose swab came back positive for metapneumovirus.  It is basically the common cold, but it is closely related to RSV and can easily turn into pneumonia especially in immunocompromised kids.  They want us to watch her temperature as a spike can mean pneumonia.  

So far, her temperature is only going down and her cough is sounding better.  Im hopeful that she will be back to normal soon.  It is just another reminder how fragile she is.  It is amazing how something as insignificant as a cold can cause so much distress and panic, but then again there is no such thing as insignificant when it comes to cancer.  

Friday, March 25, 2011

Day 5: "Spooky how time flies when one's having fun." -Gilderoy Lockhart (Harry Potter)

On day 5 we went to Universal Studio's Island of Adventure.  
We got there right when they opened and headed straight for...
The Wizarding World of Harry Potter!   

"In dreams we enter a world entirely our own" -Albus Dumbledore
...and that is EXACTLY what this Wizzardly world is like, entering a dream world!  
It is SO amazing!

We had heard about this Harry Potter world and we knew it was going to be one of the highlights of our trip.  We really wanted Cami to be able to enjoy it so we decided to let her watch a few of the Harry Potter movies (with lots of covering her eyes and parental guidance).  I am so glad we did because she fell in love with this charming series.  She had a million questions, most I couldn't answer and had to go to my nephew, Austin, the Harry Potter expert in our family for help.  I cant wait to read the books with her in a few years.  Anyway, she is hooked! 

You walk through the entrance and right into Hogsmede village.

This place was amazing!  Even if you aren't a Harry Potter fan, the attention to detail and creativity of this world would just blow you away!  It feels like you have stepped right into one of the books.  Every window, street, employee, ride, food and beverage is made to make you feel like a muggle who has discovered a secret world!  While exploring you can see signs that say "no muggles", moving newspapers, singing toads, owls, wands, magical candy shops, spells, and more!   It really brings the entire experience to life. 

Pats classic iphone pic.  Gotta love it.

We were told that one of the best experiences in Hogsmede was Olivanders wand shop.  This is where you go to see how the wand chooses its wizard.  Since it is part attraction/part shop, we weren't sure if Cami's button would get her to the front of the line so we headed there first thing.  Sure enough they spotted her button and put us right in front of the 45 minute line.  This was our first hint to how we would be treated the rest of the day at Universal.  The show was great and if she had any doubt before, now Cami was sure that this magic world was for real.

Cami had a wand AND a Gryffindor robe choose her.  
Sneaky little thing...

Here is our little muggle-born witch in front of Hogwarts School of Witchcraft and Wizardry.  She kept saying "Expecto Patronum!"  It was awesome!

Dont mind Caden chowing down on his apple...he is CONSTANTLY eating!!!

Next we headed over to the kids favorite ride.  This is a roller coaster and I was a little nervous that Caden would hate it, but he got off and said "again, again" he LOVED this ride!  I think we're in trouble because these kids are little thrill seekers.  eeeeeeeek!
The employees escorted us through the exit to the front of the line.  Then they let Cami ride as many times as she wanted.  Which was a LOT!

Next we headed into Hogwarts to go on Harry Potter and the Forbidden Journey.  The kids couldn't ride it so Pat and I left them with Grandma and were once again, escorted by the amazing staff at Universal to the front of the line.  

This ride was like nothing else I have ever experienced in my life!  This ride features the newest technology and whatever they paid the guy who designed it, wasn't enough!

Walking through the castle was AMAZING!  They had Dumbledores office, the sorting hat, the defense against the dark arts classroom, and all the paintings on the walls talked to each other.  This is one line I wouldn't have minded waiting in.  Only because you needed a good hour to take in all the detail. 

 After the ride, we had to take Cami through the castle to show her all the cool stuff inside.  Then Pat took Grandma on the ride while the kids and I went on Flight of the Hipogriff again!

Then we were in need of some Butterbeer...
I will forever crave this stuff.  It is SO delicious! 

and a candy break...

We shopped around a bit.  
Cami loved this store because it had Hermione's dress in the window.  

Thanks to Grandma Di-Di for watching the kids so Pat and I could go on the Dragon Challenge together.  This line was 2 hours long and again, we were escorted to the front!  It is the best coaster I have ever been on!  It is supposed to be 2 dueling dragons.  We got to go on both... in the front!  The 2 dragons were completely different rides.   They are constantly speeding toward each other (at 60 mph) and at the last possible second they dart one way or spin up and away.  I was told that they are weighed each time so that a computer can make the appropriate adjustments to get the timing just right.  Our feet came within INCHES of the other people's on the opposing dragon.  
We could barely walk after.  

When we'd had enough Harry Potter fun, we headed here..

"Look at me!
Look at me!
Look at me NOW!
It is fun to have fun
But you have to know how."
— Dr. Suess (The Cat in The Hat)

On the High in the Sky Seuss Trolley Train ride the conductors were SO cute with Cami!  They made her the honorary conductor for the day.  She got to say "all aboard" in the speaker and toot the whistle.  One of the conductors gave her his hat and gloves to wear on our ride.  When we got on they announced that they had made Cami Carver the honorary conductor for the day and everyone clapped.  Cami was beaming!

We got lots of special attention.
Caden cracks me up, he is so nervous in every character picture.

Caden was THRILLED that he got to go on every ride!  
He felt like such a big boy conquering  every ride in this area.

The mild rides were perfect for Grandmas and children. (hehe haha).

After all those rides Caden was wiped out!  

So while the "chunker" was sleeping, Cami took us each on this CrAzY ride.. 
she went 4 times!  She LOVED it!!!
Dudley Do-Right's Ripsaw Falls.

Next we hit up Jurassic Park Land.
Granny Di was freaked by all the dino's!

but not Cami!  That girl is so brave!

Thank you to Universal for treating the wish kids and their families like gold.  We really got excellent treatment all around.  You can tell that they have made these amazing kids top priority.  Universal has a new special place in my heart.
Thanks Universal!!!

"Today was good. Today was fun. Tomorrow is another one."
— Dr. Seuss

Monday, March 21, 2011

Day 4: a day in the life @ GKTW

After two FULL days of pure amusement park fun, Cami needed a break.  Well, we ALL needed a break!  

We decided to hang out at the Village and explore all the amazing things they have to offer.  Cami received an invitation to a tea party held at the Give Kids The World castle.  It said there would be a "special guest" attending.  Cami couldn't contain her excitement and wanted to put on her beautiful Belle dress first thing.
We woke up and headed off to the tea party.  As we walked up to the castle, we saw two village staff members at the door.  They welcomed us into the empty, dark castle.  We were the only ones there besides a few volunteers, one of them was ready with a camera.  To be honest, it was a little strange and I was starting to wonder what was happening and why we were the only ones there.    

They asked Cami if she would help wake up the castle by waking up "Grandfather clock".  She stompped, clapped, knocked and pulled on his beard.  He just wouldn't wake up!  Then, one of the staff members said a special guest was here who had lots of experience with enchanted castles so maybe she could help.

Look who came to the rescue... BELLE (Cami's favorite)!!!

She was just the right person to show Cami how to wake up Grandfather clock.

look he's waking up!

Heres what happened when Grandfather clock woke up the castle.  

Afterwards, Belle took Cami's hand and led us to the tea party...

Belle gave Caden a Buzz Lightyear costume 
and Cami a Belle doll along with other goodies.

She was one delighted little princess... if that weren't enough, Belle asked Cami if they could ride on the carousel together.

 Cami was beyond excited.
So off they went...

They rode around and around to their hearts content.  

Cami was her chatty self the entire time...

This special time with Belle was so incredible for Cami.  It was another dream come true made possible by this amazing place!  The magic was once again flowing through the air and Cami told me after that her heart was fluttering.  She lights up when she talks about this experience and how much she loves Belle.  Thank you to GKTW for putting this together for our Cami.  It was above and beyond anything we could have ever dreamed up.  Thank you to the amazing girl who played Belle so well and didn't even blink an eye at Cami's fuzzy little head, but instead kissed it and filled our hearts with love.

as you can tell, Cami was enjoying herself just a little.  

After breakfast we ran into these two again.
They were just walking down the street!  At Disney theses characters would be swarming with kids, but here there was hardly anyone around.  It was nice not to feel rushed.

Then we just HAD to check out the worlds ONLY life-sized Candy Land.  
Mathews Boundless Playground was donated to Give kids The World by Hasbro.
It was a BLAST!  -Thanks Hasbro!

Hasbro also designed and produced the first EVER custom edition of a Candy Land game just for Give Kids The World.
If you look closely at the game board you will see some of the many places we visited.  You will also see some of the Characters I talk about later in this post.
They gave us one of these special edition Candy Lands to take home.
It will always bring back wonderful memories from this trip each time we play it.
Gotta love Candy Land!

 After the park it was back to our villa for some NAP TIME..(oh yeah)!
We were ALL so tired and slept for 3 hours...having so much fun can be quite exhausting!
Poor us right?

I love this picture of Cami rockin' and relaxin'

After our naps, we went exploring the magical village we were lucky enough to be LIVING in...

We found the pillow tree, which is home to a sleeping owl.  If you can wake him up, he gives you a magic pillow filled with sweet dreams.

Cami signed her very own GKTW star which she put into the special star chest.  
When she opened it up, her star was gone.  
The star fairy (you can see her on the Candy Land board) had taken it up and put it on the castle ceiling, where it will stay forever.

"Chugga, Chugga, Choo-Choo" 
Next we found the train station.  Caden was in pure heaven!  
They even let him drive the train!

Then it was time for some ICE CREAM!!!

I cannot stress enough how each and every detail in this place is made for kids.  Everything from the bathrooms to the sidewalks are designed for little ones. This is one of the awesome garbage cans they have.  It's nose had a suction where you'd put the garbage.  It would say "feed me some garbage please" and "I love you"!
They thought of EVERYTHING!  So cool!

Next stop: swimming!
The pool was perfect for the kids (surprise, surprise).  
Pat and I were able to relax a little and watch them play together.

After a bath and dinner we headed to the Winter Wonderland celebration.
Where we met Santa...

Santa told the kids they could go pick out any gift they wanted.
This took Cami awhile.

There was a Christmas parade, cookie decorating, snow cones, cotton candy, and story time with Mrs. Claus and Christmas music all around.

Before heading home, we finished the night up with a carriage ride.

After we got back to our villa, the kids had a surprise visitor knock at the door.
Ms. Merry (Mayor Clayton's wife, who is featured on the Candy Land box) came in her PJ's to tuck them in.
More like to get them all hyper and WILD!
She had them jumping on their beds and giggling like crazy!

I am convinced that Ms. Merry was playing an evil joke on me that night because after making the kids bounce off the walls, she went right ahead and tucked Grandma Di-Di into bed. SHEESH!
  Now I had two crazy kids and one Gram fast asleep to try and be quiet for.
  Thanks a lot Ms. Merry, thanks a lot!  
No, really, we love you Ms. Merry even though you are one...Crazy Bunny!

I dont think there is any other place in the world where you can fit this much fun into one day.  Give Kids the World was so fabulous and I am not kidding when I say, I might like it better than Disney World.
It is THAT good!

That's all for now folks.
Day 5 it's back to the theme parks!