Seriously, enough already!

Yep, I've just about had it.  With this cancer thing, and all its lovely 'side effects'.  Now don't get me wrong, I know I'm going to sound like a whiny bitch here, but I'm gonna go ahead and wine whine.  I think I deserve it. 

Whining and the wine that is.

While in Florida, I did fabulous-got a brace for my gimpy knee, put on my biofreeze daily and took my Naproxen and I made it. 

I took my meds and ate small meals to avoid the nausea.

I wore a hat and big celebrity sunglasses and slathered myself with sunscreen 2-3 times daily since I know the chemo makes me more sun sensitive-more than I already am.

I guess the one damn thing I did not account for was the Florida bugs.  Apparently they have lots of little buggy bugs, and one bit me. 

 I remember when.  It was right after we got off the Popeye River Barge ride and we were all soaking wet.  I remember absentmindedly scratching at a spot on my neck and coming away with a little black bug.  Not surprising, I was wet and sticky and I'm sure smelled just bugginly delicious to him.  No big deal right?  Wrong.  By Monday last week I had a rash where that bug had bit me, and a bunch of red raised blister looking things.   

Ok, triple biotic cream, anti-itch cream, benadryl and I thought I was good to go because it *kinda* started to look better.  I have never had a bug bite do that to me, seriously?

Of course I wasn't good to go, who the schmuck was I kidding????

This Monday night I was reading and remember scratching my left cheek-clarification-face not butt.

Within 15 minutes Hailey looks at me with horror on her face as if I had just sprouted a second head. Upon looking in the mirror I see those same familiar blistery looking spots on my cheek where I had been scratching-and now it's a hot mess red color. 

LOVELY.

So I wash my face, apply a warm soak with epsom salt, then a cool pack, then top it off with some anti-itch cream. 

Woke up Tuesday morning and it actually looked better.  Well shucks-did something just really work in my favor?  HA HA HA said the Gods.

Wake up today and though it looks 'ok', as the day went on it turns into a red, raised, hot to the touch, oozing, size of a fifty cent piece mess.  Even more lovely. 

Call the cancer center and they damn near freak out.  Since my immune system is so jacked up right now, they are pretty sure my bug bite has turned into a cellulitis.  Off to the pharmacy for some steroids and antibiotic.  Though it does look and feel a little bit better tonight-after a cocktail of pink lemonade Crystal Light, 6 Methylprednisolone tablets and two Doxycylcine-I'm hoping to wake up and it be gone.  HA HA HA-in my dreams.  Because if it isn't better in the morning I get to go to the cancer center for them to see it, and possibly admit me for some stronger antibiotics-intravenously.  Just what my Thursday agenda called for. 

All my oozing, freak, horror show face issues aside.  I have to mention that the Rifle Raffle winner was pulled by me last Monday at the KCPD Care Team Golf Tournament, and the winner was .....

Chad Pickens.  Chad is a very nice guy, and after posing for a picture with me and his new gun, he handed it back to me and said he wanted it to be auctioned off for more money to help us out!  I hugged the poor guy and probably scared him with my death grip.  One of the nicest things anyone has done for us.  The silver lining of this cancer cloud that hangs over my head?  Ok, I should say the silver lining of the black cloud that seems to loom over the Rawley family-is the kindness and generosity of people.  We are blessed to have such amazing people in our lives, I can't say that enough.  And the biggest thanks ever to Troy Phillips for setting up the whole raffle, selling tix, recruiting people to help him-Onik, Garth, Hooley-I know I'm missing more people-but those three I know really stepped up to help-a huge thanks to them also.  And to SnapShot guns for doing the deal with Troy to get the gun in the first place.  Need a gun?  Check out Snap Shot in NKC!!!   Thank you Troy and Andrea-we love you guys lots!  The Raffle brought in over $8000 so far, and the auction will take place on Friday June 1st.  If you are interested in the auction please read below and email Troy:

Due to the great generosity of Chad Pickens, the winner of the “RIFLE RAFFLE 4 RAWLEY”, we will be offering the rifle up for auction. All proceeds from the auction will be donated to the Rawley family in addition to what was previously raised from the raffle. The auction will be held by email on Friday June 1, 2012. Bidding will begin at 0800 hrswith a starting bid of $350.00. Those that submit bids, a return email of the highest bid will be emailed back every 2 hours with the last update at 1900 hrs. Only those who have submitted bids will be sent an update. The highest bid at 2000 hrs will be the winner of the rifle! The rifle is a new Stag Arms AR 15, Model 2. It also includes the case and one 30 round magazine. Non department members are welcome to bid as well! Bids and or questions should be sent to:

FPhillips@KC.RR.COM

 

And don't forget the motorcyle ride is Saturday June 2nd.  There is still time to register at

www.kcgunsnhosesride.com

A bunch of us are meeting at First Watch in North Kansas City at 8am before the ride-everyone's welcome to join us! 

Summer is almost upon us-geesh where did the time go???  School is almost out for all three kids-Ethan's last day was Monday, and he has already let us know how boring we are at home.  He got to spend some time with Grandpa Tuesday, but I think he was just a crabass-hoping that changes pretty quick, cause summer school doesn't start until the 18th.  It will be a long three weeks for him if we have to lock his skinny butt in his room that whole time....Just kidding....mostly.

Hailey and Parker are done on Friday, then Parker leaves next week for his Canada fishing trip with the Williams.  Hailey will be working hard at volleyball camp, and practicing her mad driving skills

My chemo break is almost over, and the new stuff starts up next Tuesday. 

 Hoping this crap is off my face by then.....

yeah right.



Just a pic of my things....

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......