And all our wishes came true....

This will be a long blog post, due to the fact that I couldn't get my pics to download to my computer while we were in Florida, and I didn't want to post without these gorgeous pics!
But don't worry-it's not a lot of reading, mostly fun pics!

I will start with Sunday the 6th-the day we left KC and Ethan took his first ever plane ride!
Ethan's Make-A-Wish wish granters Marita and Stephanie came to see us off and brought with them a pretty blonde girl...

Of course he got kisses from that blonde gal!

Lots of family and friends came to see us off too!

As far as Ethan's first plane ride, he did pretty darn well, as long as he could look out his window

And listen to some tunes from his other fave blond gal

The resort we stayed at was Give Kids the World, and was geared towards kiddos all the way. 

Our home for the week was villa 123. It sure was convenient to pick up the phone and order a pizza, or drinks or rotisserie chicken dinner for all of us after a long day at the parks!

Breakfast and dinner were served at The Gingerbread House

The other fun places on the resort were the Carousel, which of course looked like a polka-dot mushroom!

The Train Station, where there were games, a huge model train set up,

mini-put and remote boats to drive

The Castle of Miracles

Where a star with Ethan's name on it will forever remain,

 along with thousands of other special kid's stars

Monday we were off to Magic Kingdom and a meet and greet with three beautiful princesses!

Ethan really liked looking at Cinderella's sparkly dress

And might have even started crushing on a brunette; Belle....

Of course, it was right back to the blondes once he saw Princess Aurora

And we left the castle with no less than a head full of Princess kisses!

At Hollywood Studios Brian and Hailey had no luck talking Parker into riding the Rock and Roller Coaster once he saw how fast it took off

And Ethan was super fascinated with the green Army man

At Epcot we rode Spaceship Earth-Ethan's very first 'roller coaster', and got to see the flowers and shrubs shaped as Disney characters

And we shopped for some Mickey ears for the kids

Sea World brought hungry, barking sea lions waiting for a snack

And we could never miss the Shamu show-from the front row of course-right in the Splash Zone!

These two killer whales were actually pretty sweet. 

On each other anyway

Our first visit to Universal Studios was awesome! What an amazing place, with some really cool people and rides!  There and at Islands of Adventure, the cast members were so helpful and once they spotted Ethan and his big blue button, really rolled out the red carpet for him!  We were offered drinks, snacks, gifts, private pics with characters, and a great time was had by all!

Once inside Universal Studios it was picture time with some pretty cool friends,

 starting with kisses from the crazy monkey himself-Curious George

Then on to Woody Woodpecker and his girlfriend Winnie

Shaggy and Scooby Doo

And a crazy family, much like ours, The Simpsons

The Shrek 4D show was incredible

We also enjoyed Twister-a movie quality show from the movie Twister, complete with wind, rain, fire and moving platform that made us all jump!

We had lunch at The Monster's Cafe next to The Creature from the Black Lagoon.

We experienced a flood, fire, subway car derailment and black out on the Disaster ride.

Brian and Hailey rode an insane roller coaster called the Rip Rocket.  It took you straight up, then straight down before a series of crazy loop-de-loops and upside down spins and twists.  A ride Parker and Ethan and I just watched comfortably from afar.

The crazy coaster riders also rode The Mummy ride, and I wanted to ride it, but my stomach just wasn't feeling anything too crazy that day, so I held off. 

The Men in Black ride was fun, but I would have to say the ET Ride was definitely the highlight!  Ethan loved that ride and couldn't move his head fast enough to see all the special effects. 

The Super Stars parade featuring Gru, the girls and the Minions topped our day off!

Our final day in Florida was spent at Islands of Adventure, where once again,

Ethan was treated like the true hero he is. 

Once inside we headed to Seuss Landing, where we got a special back stage visit with Cat in the Hat, Sam I Am,  Thing1 and Thing2, The Lorax, and the Grinch.  They were so wonderful to Ethan, spending lots of time with him, holding his hand,

 rubbing his head and posing for hundreds of pictures.

Once in Hogsmeade, it was much the same as Seuss Landing.  As we were wondering around admiring all of the town, we were approached by some cast members who invited us to Ollivander's magic wand show right in the front row!  All four of us rode Harry Potter's magic wizard ride, one I almost didn't ride, but am sooooo glad I did-it was amazing and fun!  Hailey and Parker rode the Hippogrif, and the roller coaster daredevils Brian and Hailey rode the Dueling Dragons.  I do regret we forgot to get a glass of butterbeer before we left Harry Potter land though!

We were approached a third time by a cast member for a special photo op with some super heroes!  These special folks spent a ton of time with our guy and us and we got some pretty cool pics.  Storm hugged me right away and said she knew I was a survivor and wanted to make sure she and Rogue got their picture taken with me!  Lots of hugs from the X-Men characters ensued.  Then a handsome Captain America and Spiderman showed up too!

Spiderman, Wolverine, Cyclops, Capt America, Storm and Rogue



Ethan was cracking up at the posing posse of super heroes

The Men

The Women

Parker wanted in on the action with Storm and Rogue!




We thouroughly enjoyed the Jurassic Park ride, the Storm Force Accelerator and the Spider Man ride was awesome!  Brian and Hailey braved the Incredible Hulk ride-another one us chickens sat out from, and we all enjoyed the Popeye water ride-where we got completely soaked-henced the wet clothes in the above pictures! 

It was a magical trip, and though it took me three days of sleep and rest to recover from, one I wouldn't trade a thing about!

Thank you Make-A-Wish, you made all our wishes come true!
now back to the real world.....

We made it!

Getting to Florida was way less dramatic than I had played out in my head, which always makes things nicer! Everyone at the airport was kind and helpful, and I think a little afraid of our bald guy. We were of course pulled out of the screening line due to his wheelchair, and my hands were tested, along with his chair, but nobody wanted to touch him. In the end, that ended up being good enough, and on the plane we got.

  E did fabulous on the plane ride. One little crying fit while we were still climbing-the weather in KC was kinda crappy at take-off, and the pilot kept climbing to avoid the turbulence. During that time my ears were popping, so I know his were probably driving him crazy. Since he can't chew anything, I popped some Taylor Swift on the iPod and in his ears, and let him suck on a bubblegum dum dum sucker. That and sucking on his fingers while looking out the window seemed to do the trick! Thank goodness!!

We arrived at Give Kids the World around 7pm, and got all checked in. Brian attended the parent orientation and found out about all the perks our special guy gets while here. Let me just say this place, and its 1500 shifts of volunteers each week, are Aaaaaaamazing. And it's comforting to know that unlike any other resort we could be at, all of us here are in the same boat; experiencing a worry free, cost free, stress free vacation designed just for our family.
Oh, and with ice cream for breakfast if we so choose.

  Today was Magic Kingdom day. And absolutely magical it was. It started with Ethan's Cinderella 'meet and greet' which turned out to be a meet with three Disney Princesses; Cinderella, Belle and Princess Aurora. Let's just say everywhere we went after that people knew he had seen the Princesses, because they all left their lip prints on his bald head! Belle couldn't get enough of him, she held his slobbery hand and rubbed his cheek and talked to him so kindly while she rubbed his legs and planted kiss after kiss on his head! It was so precious and brought tears to my eyes to see his happy smile.
 Look out blonde gals, that brunette just gave you a run for your money in my boy's eyes! Then off to the rides we went!!

   Ethan was the high scorer on Buzz Lightyear's Ranger spin. He loved the Pirates of the Caribbean ride, the Haunted Mansion, The Peter Pan and Snow White rides. But he adored the Winnie the Pooh and It's a Small World rides! In the Hundred Acre Woods, his car bounced like Tigger and he was laughing hysterically and then got pissed when it stopped. Then it rocked side to side, and he was back to laughing again. The Small World ride was so bright and loud and had so much going on, he couldn't move his head fast enough to see everything! Parker braved Space Mountain, and loved it! And I even rode Splash Mountain! We were able to hit every ride and show we wanted to, so when the rains came at 8pm we were ready to pack it up and head back to GKTW. We did miss the parade and fireworks show, but we are pretty sure they cancelled tonight because lots of lightning shows up as we were riding the monorail back to the parking lot. Oh well, if the weather is better another night this week, we may head back just to watch those two things!

  Our plans tomorrow are for Hollywood Studios and Epcot, weather permitting. If not, we will hang out at the resort cause there are some projects Ethan has to do here too, like take his name star to the Star Fairy to have a forever home on the ceiling of the Castle of Miracles, and to make his magic pillow.

Sorry there are no pics tonight, I couldn't get them to load onto the iPad dangit. I know I got some cute ones! Maybe tomorrow. Headed to bed now, and I'm sure you are all wondering how I am doing- and the answer is fabulous of course! I feel fine, and rested and am just enjoying watching the kids have the time of their lives. Especially how interactive Ethan has been with the characters and his excitement over the rides! My bum right knee bothered me more than anything today which really sucks since we have lots more walking to do!

We only forgot one thing in KC.....the handicap placard for our rental car!!! Thank goodness the Kingdom wasn't too busy today, regular parking was just as close as handicap. Thanks Trevor for overnighting it to us, we will need it the rest of the week!

Good night and sweet magical dreams.

Halfway done!!!

Today, after 3 days of blood draws, insurance snafus, "funny looking" white blood cells, and lots of debate, I am getting my fourth and FINAL dose of the Red Devil and Cytoxan. Woo freaking hoo!! I am officially halfway done with my chemo. I get a three and a half week break then start up on Taxol.

  My fabulous NP Jennifer reminded me today of the side effects I will experience with the new drug. Pros? Less nausea. Which means no more expensive Emend prescription to fill.
Cons? High chance for allergic reaction. So, with that is the need for pre-meds which means steroids. And I so love steroids that make me crazy and swell up and hungry all the time. But I will trade the nausea for that any day!
Another con? Treatments will take longer because they start out with a small dose of the chemo and titrate up as I tolerate it.
And yet another con? Pain. Joint pain and chest pain starting the night after the day of chemo. Good thing I saved me some Dilaudid from my surgery!
  As soon as I get my schedule for the next 4 treatments I will be looking for side kicks to join me on those long days and keep me entertained. So let me know if you are interested in spending a boring afternoon with fabulous me and my drugs!

As soon as we are done here today, we will head home to finish laundry and start packing for our trip! We leave KC on Sunday for sunny Florida for Ethan's wish trip courtesy of Make-a-Wish! A wonderful, fantastic organization that really does make dreams come true! Thanks to E's wish grantors Marita and Stephanie, a very special blonde girl will be at our house on Sunday to see Ethan off. No, not Taylor Swift, his other fave blonde gal-think Prince Charming and glass slippers......

We have all of the bald kids stuff in a pile that we know has to go, now it's just a matter of what goes in carry on, what gets checked. That ought to be fun. "Why yes Mr TSA screener, that little bald kid really does need all that shit to survive-and we went ahead and added in a few more items-namely the Benadryl- to make the trip more enjoyable for all the other passengers too!". I can't wait to see the look on everyone's faces as we wheel up to the gate looking like the Clampits of the special needs world! We are bringing Stinky's car seat too because I have no desire to wrestle with his skinny ass for a 3 1/2 hour plane ride should he decide to get squirrely.

The plan is to load him up with some Benadryl, Sudafed, pop him in his car seat, and slap his earphones in blaring the lovely sounds of his blonde girlfriend and fly the skies. You know what they say about the best laid plans, and it is Ethan Rawley after all.....something is bound to go awry. Maybe he can ride in the cockpit with the pilots???

As for me,and my plane ride fears....I will be popping an Ativan or two and waiting for the beverage cart to make its rounds. They may need Ethan's wheelchair and one for me by the time we land!

As far as our itinerary, Ethan has a date with Cinderella Monday at Magic Kingdom and we will spend the rest of the day there. Then we are planning Hollywood Studios and Epcot on Tuesday. Sea World on Wednesday. Universal Studios and Islands of Adventure on Thursday and Friday if needed. We really want to try to hit Gator World on Friday if we have time. We will be staying at the Give Kids the World Resort, a place for only wish families, and caters to kids with handicaps. The resort itself has tons of stuff to do between two pools, an arcade, a train, a mini putt putt course, a boundless playground, movie night, a fishing pond and visits from the characters too! So if The two bald people get a little worn down, we can always just hang out together at the resort and have plenty to do and send the crazy ride peeps to the parks! Oh, and did I mention pizza delivery and ice cream parlour open til 11pm????

Brian has been released from Dr Saterlee back to full duty on the 13th, but he still wants him to continue physical therapy for a month to help get his strength back. He is about 98% right now, and Dr wants him at 110% before he can go back to lifting and working out. It will be about 4months before the doctor thinks he can hit the gym again. Looks like it's cardio for him in the meantime. The good thing is he can start working off-duty again, which will offset my not working full time.

 I worked 21 hours last week, and an 8 hour shift this week and man it felt good to be back in the land of the living and working! And of course all the laughs that ensue when I'm back in the NKCH!! My crew there is awesome and have happily been trading off working my shifts which opens up day shifts for me to get a few hours in each week. I wish I could go back to my nights, but just don't have the stamina right now to last that long for that many days in a row. I am thankful for my co-workers willingness to help me out and my supervisors to let it work out this way! You guys all rock!

Brian and I have been discussing how we could ever possibly repay all the kindness bestowed upon us, and we've been tossing around the idea of a Rawley rip roarin party sometime in the fall complete with his famous ribs and brisket and all of you!!! We will of course need some music too-debating on the spins of DJ Dave or something live like the Cherry Bombs or Perpetual Change.....we've got a couple "ins" with those three, and will have to see what we can afford! We really just want the opportunity to extend our thanks and gratitude to all of you who have stood by our sides and held our hands, held us up in prayer and held us together during this stretch of speed bumps on the twisty, curvy, hilly highway of our lives! Please know how much we appreciate each and every one of you!

Gotta run. Gotta go pee out the Red Devil and get going on my last dose of Cytoxan. Lets get this show on the road, I gots lots to do today!

Watch FB and the blog for updates from the happiest place on earth......

Happy Birthday-to Me!

Yes, today I turned 41 years old.  And it was a lovely, low key, stay in my jammies, watch movies and hang out with the family kind of day. 
I want to thank all of you who left emails and fb messages and texts for me today-there were over 200, and it really makes me smile reading all of them!  I am truly blessed!

I had treatment #3 on Friday, after much debate about why my white blood cells look 'funny'.  The lab didn't want me to get my treatment because they looked 'funny' under the microscope.   My  NP told them since I am getting the Neulasta shot she would expect them to look funny, and if they couldn't give her a reason other than that NOT to do my treatment, then I was getting it.  That took 3 hours of debating....in the meantime, funny or not-my WBC's were 17.8 and my neutrophils were 7.6 all in good range!

Woke up a little nauseated about 6am this morning, took my meds, Brian made me some toast, and back to bed I went til about 10am.  I've been feeling great since then, taking my meds on schedule really helps.  I'm working about 5 hours tomorrow, then get my shot in the afternoon.  Then I'm sure I will be home to sleep for two days. 

The bald kid has an appointment at Pulmonology clinic on Wednesday, we may finally get a release from there since he's been off his oxygen for so long.  I think they still need to manage his Robinul for his secretions, so that may keep us going back for appointments for a while still.

Saturday we drove up to Lawrence to watch Hailey's step-sister Mariah play softball-KU against Iowa St.  It was a beautiful day for their Pink in the Park!  Too bad they lost-but it was still a fun outing. We got there early, tailgated with Hailey's Dad and her other 'Mom's' side of the family.  My die hard K-State sis and bro-in-law cheered for the Hawks, and my die hard MU husband even bought a KU shirt he sported just for Mariah!!  After the game Mariah gave me her LIVE PINK  KU warm up tee-I love it sweets-thanks so much!!
 I, of course, had my scarf on and two lovely women came up and introduced themselves to me, sharing their breast cancer survivor stories and ensuring me that there is indeed an end in sight and that I am a survivor too!  It's not a club I ever wanted to be a part of, but damn it's got some awesome ladies in it!  Kind of like my Special Needs Moms Club-nothin I can't handle with the support from some amazing folks!

Heading to bed, gotta get up early.  Though I do have to say, not having to 'fix' my hair sure gets me places on time!

Yes, she's that much taller than me!

Mariah Montgomery #23-Home Run leader for KU!!  Hailey, her other Mom Kim and her little sis Gracie

Gypsy or JT?

Since shaving my head last week, I've been experimenting with some new looks.....

The Gypsy look?

The Justin Timberlake?

I'm not sure which I like better yet.  Still playing around, these are just some wigs I had at home already-neither of which the kids would let me go out in public in.  I'm definitely not spending too much time without something on my head, cause it's amazing how cold you get with no hair on your melon.  The first night I was hairless I slept with a stocking cap on my head!  My ears get cold too, even with a scarf or hat on! 

A big thanks to my friend Andrea who shaved my head!  Love you bestie! 

before the shave off

Andrea and her sister Benja have been acquiring hats from all over the country for me to wear!  I have some darn cool ones from Michigan-thanks Mrs Williams and Colette's sis!  From Colorado, Washington and even a cute one with a moose on it from Montana! 

A friend and I are going wig shopping in a couple of weeks.  I figure I need at least one cute one to wear should the occasion arise that a hat with moose on it, my gypsy or JT wig, or a scarf don't quite cut it.  Though the bald look is ok, as I mentioned above, my noggin gets pretty chilly in this weather. 

The scarf look does afford me some perks though.  At the movie the other night I was able to substitute an icee for a soda when it was clearly marked 'no drink substitutions'.  And the sweet little boy at the concession counter even mixed mine to order-coke and wild cherry.  The lady after me wasn't very happy when he told her no.  This cancer bs ought to get me some perks right? 

My counts were finally ok enough to go to work this week! Yeah!  I worked an 8 hour day shift on Monday and am working tomorrow (Wednesday) too.  I was really worried that this Friday is payday, and I know I had no more PTO left, so things were gonna be a little tight around here.  So you can imagine my surprise when I got to work yesterday and checked my 6 week old email account to find that the awesome, kind people I work with have again donated hours of their PTO to my account!  Looks like the hot dog and ramen noodle menu can be replaced with some chicken and hamburgers!  I don't get emails with who donated time, so I can't thank everyone individually and personally, but please know you make my heart warm and are making this journey much less stressful for us!

Work was good, felt great to be a productive member of society again-even if it was only for 8 hours!  It didn't wear me out too terribly bad, I didn't even yawn until the last 7 minutes of my shift! I got lots of hugs and smiles and words of encouragement and support from all my co-workers.   I got home and seriously thought about taking a nap, but didn't want to sleep all day today knowing I had to get some sleep for work on Wednesday.  I did, however, change into my jammies at 5pm and plant myself comfortably on the couch and watched "We bought a Zoo" with the fam before heading to bed at 11 with my bedtime fave "Big Bang Theory"!  I am grateful and blessed to have a job that is willing to work with me through this!  Thanks again, NKCH!!

The bald kid showing his support with my stocking cap made just for me by the sis of a former CMH co-worker!  Thanks Bobbi-I've been wearing it with all these cool nights!  I can't wait til winter, cause she makes some awesome kids hats and having another bald person in this household-I'll need some new ones!  Check her out on facebook at Lil Monster Threads!

But like my bestie Carissa was hoping-my head is at least a nice shape-unlike a football, or mail slot or crater.  The bald kid still pulls it off much better though! 





Most often you will see me sporting a scarf.  This is me and my gorgeous little sister Kate.  And here's my plug for that lime green bracelet on her arm.  Kate had a golf ball size area cut out from behind her knee that had been a mole removed which came back positive for melanoma.  She turned 30 the day before this pic was taken-which was last week!  Thank goodness of the four moles she had cut out, only one was truly melanoma, but one other had 'atypical' cells.  Please, please, please wear your sunscreen, get your moles checked, and stay out of the tanning beds!  I was a sun worshipper for years, including loving my 30 minute naps in the tanning beds at Sarah's Flowers-for my Dotte peeps-covering myself in Crisco and baby oil and laying out on those silver mats!  My vanity stopped me from getting a ton of sun on my face a few years ago when a sun spot popped up on my right cheek (face cheek not ass cheek) and with more sun-got bigger and bigger.  So now I slather on the moisturizer with sunscreen, sunscreen, wear hats and

AVOID THE TANNING BEDS!! 

 'Our beds filter out the 'bad' rays' bullshit.

Spray is the way-that is until they determine the overspray we inhale causes lung cancer??!!?!?

 Until then, I'm happy with my pasty white skin-minus melanoma-and an occassional spray for special events!

Gotta get some zzz's.  Got another 8 hours to work tomorrow!

oh, and 19 day countdown to Disney!!





Hair today......gone tomorrow

Yep, the time has come. It's got to go.

When I went to chemo last Friday, they all commented on how I still had my hair, but not to get too used to it. So Saturday I showered and a dust bunny size came out easily.
Sunday-more dust bunnies of wadded up hair.
With Sunday came the fatigue and the nausea-but I figured out what I did wrong, or I should say 'out of order'. My first treatment I was waking up early in the morning and taking my first dose of nausea med before it really hit me, then going back to bed for a hour or so. Then when I woke up to face the day, I didn't feel too bad. This time I have been sleeping in, then taking my first dose whenever I got up for the day-sometimes 11am....no judging, if you know me, you know I like my sleep! Anyway-not the route to go. I seem to be behind my nausea and am playing catch up all day then feeling good at night. Today I think I got back on track, and am actually feeling pretty good!

Then I took a bath. I have been on antibiotic for the start of sinus infection last week-which they told me would linger on forever. Awesome. Full head, popping ears, runny nose, sniffles, chills headache and sinus pressure that lasts for weeks!!! Just what I wanted! Since I felt less nauseated today, I thought I would take a bath with some of my detoxifying salts. The bath felt fabulous. Even helped my sinus pressure and achy joints a bit. Then I washed my hair. Tons of hair out in my hands. Made my hands shake, made me cry. I knew this was going to happen, but to be honest I'm really not prepared for it. I don't want to lose my hair. I don't want to see the look on Hailey's face when she sees me bald for the first time. It hurt her to look at all the hair in the trash can and vacuum up all the rest that came out when I blow dried it.
My friend Carissa described it best. She said looking at me now I don't look 'sick'.
Don't look like I have cancer. But once I'm bald, there will be no question. I don't worry about how other people -strangers will look at me. I'm worried about how 'real' this will all become for all of us once there is no denying it. But I am getting real tired of people hair all over my pillow and clothes and robe. And I still feel like I have a piece of hair stuck in the back of my throat I can't get rid of. The poor dogs are walking around coughing and continually licking their lips from all my hair floating around, I kind of feel bad for them.
So today is the day. It all goes. I can't stand another day of pulling it out in the shower and did I mention that my scalp hurts? It actually aches like from a pony tail or hat too tight, or a sunburn on my scalp. Weird feeling.
An amazing cancer survivor whom has taken me under her wing pointed out all the positives to losing my hair-no shaving my legs. No eyebrow plucking. Never not ready for tank tops. New fresh hair. Did I mention no shaving my legs??? And my personal favorite-no more money spent on color, cuts, and hair products (I'm kind of a product whore-it's in my genes I can't help it). My husband's fave: less prep time. By hours! Just kidding. But I'm sure we will get to more places on time now!

My friend Andrea is on her way over now to shave it off. And I'm sure there will be some tears, but just like how I'm going to approach every part of this crappy disease-let's do this and get it over with. Prolonging the inevitable won't make it go away, so I may as well grin and bear it.

Pics of the other bald person in our house to follow tomorrow.

Brian officially got to get rid of his sling today and as long as PT continues as is, he will be back to full duty early May!! And since I haven't been well enough to get back to work yet, that will be nice. You know what they say about the best laid plans......

Days like these....

Oh, how I love them.  The weather is cooler, almost colder than most of our 'winter',  Ethan is on Spring Break this week, so he and I slept in til 11am-oops didn't mean to-and now I am updating here while he lays beside me on the bed watching "Happy Feet 2" on my Kindle laughing hysterically!  I love it when he laughs at something appropriately!  Like Saturday when Hailey and I took 4 boxes of glass bottles to the recycling bin and as she dropped each box into the already huge pile of glass, he squealed at the crazy, crashing loud noise it made! 

Speaking of the little bald guy-he turned 8 on Friday March 30th-and we celebrated Circus style.  Sorry, Camryn-ribs aren't usually circus food!  Hots dogs and nachos.  Cotton candy and popcorn.  Licorice and candy.  Punch balloons and elephants  wait scratch the elephants-not in the budget this year!  AND I was informed this is the last year for a 'baby' themed birthday party for him.  Try and stop me honey, just try.....

3 layer fondant cake courtesy Emily Bowers!  It was so yummy thanks!!!

when you have a peanut allergy kid-orange candy ones are the next best thing!

Ready for Disney!

Aweseome cool light-up toys I found in the $1 spot at Target!

Had to post two pics of the kids to get everyone looking forward!  Ella what are you doing to Parker?

Kristin checking out E's new bean bag!

So the party was a huge success thanks to all my family and friends who helped me decorate, set up, blow up balloons-we used the air compressor-and then stay and take it all down and clean up!  I was very grateful for the last part especially because I hadn't gotten my nap that day, and I was beat!

I had my Neulasta shot last Monday, it is the white blood cell booster shot I will get after each chemo treatment.  Not too bad, and thank goodness I didn't get hardly any of the side effects that can come with it-which are terrible bone pain in the low back, hips and thighs and sternum.  I took my prescribed regimen of Claritin and Ibuprofen and I think it really helped.  I had a couple days of twinging, heat-like pain in my right hip and leg, and some burning in my chest.  But because my heartburn is so bad, I'm not sure which pain was related to which treatment. 

Now for the fabulous news...........

My blood counts were amazing!  When Jennifer-my NP-came into the room she jokingly asked if I had even received any chemo the week before!  My white count was 8.9-yes higher than the day of treatment when it was 6!  My neutrophils were 3.5-higher than my treatment day of 2.8 also!  Like a good RN friend posted-I had Ninja cells!  Woo-hoo!  I had one crappy day where I slept pretty much all day-it was the day before Ethan's party, and I was kind of nervous I wouldn't make it through his party.  But I slept so good that night and made sure I slept in a little bit the next morning, I think it made all the difference. 

My hair is not coming out yet.  I have a little in the drain when I shower, and it feels a little thinner than normal-but no clumps! 

I half jokingly said to Brian last night that I hope Robert Courtney wasn't the Pharmacist mixing up my chemo drugs or I'm in trouble. 

*all joking aside, for those of you who don't know who that d-bag is, he was a KC Pharm who diluted chemo meds for patients in the name of making more money-and I firmly believe he will rot in hell for what he did to those people and their families. 

But it does make me kind of nervous that I 'm not getting any of the 'normal' side effects.  Not that I WANT any of them.  But what if it's not working? What if the dose IS wrong?  Ugh, I could make myself crazy thinking about it-so I just don't.  But back to Rawley's Law-if it can go wrong......

Anyhoo-big news on the horizon-I get to go back to work!!  Not my full hours, but 24 a week for now!  I am going to plan on working Monday and Friday nights!  I am hoping to start next week, so we will see how that works out.  I miss my work, and my co-workers!  And they keep telling me that the only way to beat fatigue is to stay busy, so here goes!!!  As long as my counts stay up I will be ok, but if they should drop, we will have to re-evaluate.  I am thankful to have such an awesome department willing to work with me! 

Brian is looking forward to maybe getting out of his sling the end of next week!  His PT says he is improving on his range of motion by about 14% after each weekly session.  If his sling comes off next week, they will start working on strength training until mid-May.  Then he could possibly go back to full duty (and off-duty) then!  We will need it, cause even though I can go back, this week will be the last paycheck I get.  All my donated PTO will be gone, and the only hours I will have on each check will be those I work.  We'll make it-we always do.  On a wing and a prayer and a lot of help from our friends and family!  Speaking of family, my Aunt Mici is coming in town tomorrow to stay for a week with us!  It will be so good to have her here!  I can't wait!  So she and my Mom are going with me to Chemo this week, hope they have room for us again!  I have to be there at 8:15am-seriously?  Don't they know I'm a night owl???  Oh well, I will just take my Ativan and take a little nap, by the time I'm done it will be lunch time!  And maybe time for a little trip to Good Ju Ju's new store and Bella Patina ......

One more thing-my kids made me the most wonderful gift-a Quillow!  It's a quilt that folds up into a pillow for me to take to my chemo treatments and they made it all themselves!  Teresa-my Dad's wife-her parents were in town a week ago, and Janet-her Mother- is an amazing seamstress.  Well, she helped them do it, but said Parker was fabulous with the sewing machine; sewing and talking and pulling pins all at the same time!  Better than Hailey!  Janet volunteers with incarcerated women in Iowa-just one of the MANY places they volunteer- and they make these Quillows for the women at Hope Lodge, a place much the Ronald McDonald houses who provide a place for cancer patients to stay while receiving treatment.  I am making the lodge one of my pink ribbon wreaths in exchange for her making me some head scarfs! 



Don't my kids do great work?? I think I've fostered Parker's creative skills quite well?!!?!!?