CLEVELAND!

Well, let's first update you all on Edward's eye exam with Dr. Shields on May 8th. He was first case that morning, so 6:15 a.m. arrival time.  Eddie slept horribly the night before, waking up anywhere from 5-8 times.  This sounds weird, but I think he knew...He wanted milk, which is not allowed after midnight.... He asked and asked, and I said no over and over again. I  offered water.  He didn't want it. It was a long, long, night for my Mom and I.  And when our alarm clocks beeped at 4:30 a.m., we were barely able to roll out of bed.  But, we hustled into the car with our coffee mugs full, and a sleepy head in his car seat and drove into the city.  A few blocks away from Will's Eye Institute, my Mom recognized my nervously tapping foot and asked, "What's wrong?" and I said, "I feel like I am going to throw up."  It doesn't matter that we haven't been there in 5 months.  It doesn't matter if it has only been 1 month since our last appointment.  I feel sick to my stomach every time, fearing the unknown, fearing a silent regrowth, fearing the rug being pulled out from underneath of us... again.   Upon arrival and check in, Edward started sobbing and clung to my neck. He knew exactly where he was, and he knew exactly what was about to happen.  Eye drops, nasty tasting versed, doctors checking him, poking him, nurses carrying him away from us and back into the OR, and from then on IV sticks, until finally a vein is deemed okay.  A mother's grief.... to not be able to soothe and ease the fears of your child... Ugh, and then the waiting...... Finally they called us back after his surgery, and Dr. Shields told us he is STABLE.  Both tumors look the same.  The same is good. The same is great! They are never going to go away, so the same is good.  No new growth.  No seeds. No fluid. A six month pass until our next appointment...

Me (in total disbelief): Six months?
Dr. Shields (smiling): Yes, six months, he is doing great!
Me: No really, we can come back sooner.  Six months seems like a long time.
Dr. Shields (aware of our upcoming move to Cleveland):  Look, even if you lived across the street from Will's, I would still give you a six month pass.
Me (tears spilling over): Really?
Dr. Shields: Yes.
Me (as awkwardly as possible): Can... I.... hug, you?
Dr. Shields (as awkwardly as me): umm... Sure!

Thank goodness my Mom was there to kick me under the table to knock some sense into me and to get me to pull myself together.... MUSH... I am all MUSH these days... and yes I take anxiety medicine to sleep... because without it.....I wouldn't sleep.  These past two years have been rough, and I am constantly worrying about the next "rug" that will be pulled out from underneath our feet.  I hope as time goes on, Edward's eyes will remain stable, and we can "move on"?  I don't really know if those words are the rights words, but I would like to live a life that is less full of anxiety and more full of excitement.  I definitely know I worry more than I should, but I just can't help it.  I am hoping to get back to my old self... my tough Philly girl self that can take on the world while multi-tasking a million things, and still laughing my head off at silly jokes.  And I am hoping CLEVELAND is our new fresh start, where the "rugs" will.... well.... stay put! haha! Forever and ever!

And so we have moved, we have Ohio driver's licenses, we have a backyard, we have SPACE, we have a Shaker Heights address, we have a few new friends already, AND we have a playground we can walk to,  and Edward already loves it!

We would like to thank both of our parents, Matt, Melissa, and Nicole for arranging plans so that they could come to Cleveland to help us move!  We couldn't have done it without your help!  I have many more pictures to post.  I have to show pictures of our Kiawah beach vacation, the Cleveland Zoo, and more pictures of our house!   Next post, coming up sooner rather than later! Love, Katie

Charleston Beach Week 2013

A girls trip!  NO boyfriends, NO husbands, just 8 girls...... and Eddie!  That's right, Eddie experienced his 1st spring break of his life, and it was fabulous for him AND me!  Suddenly, the night before we were supposed to leave I found myself really nervous and wanting to back out last minute.  Of course Michael taledk some sense into me.  He said, "Kate, you ARE going away with SEVEN nicu nurses... I think you'll be okay." I agreed and excitedly packed every outfit Eddie owned. And I am so incredibly glad we went. He was the center of attention all day, everyday.  He now has seven girlfriends!  Haha!  We stayed at the Wild Dunes resort in an awesome condo close to the pool and beach. We visited the Charleston Aquarium, played at pool, splashed in the waves, built sand castles, went on bike rides at sunset, and ate ice cream every night.  On the last night, all of the girls went out to a fancy dinner in downtown Charleston, but Eddie and I stayed behind to have a date night ourselves, and to let the girls have a stress free dinner.  He was so upset that he cried for 15 minutes when they left. He stood hopelessly at the window saying in the most pathetic voice,  "Girls, where are you?"  Check out some pictures of our amazing trip! I apologize, the pictures are not in chronological order.

Oh, and by the way, Eddie is doing great.  We have out next EUA at Wills Eye on May 8th.  As you can tell Eddie does not have his glasses on in any of these pictures... yes, we took a little break on vacation (bad move, Mama, bad move) and now we are trying to get back into our glasses wearing routine.... Eddie has been very stubborn, and protests the wearing of his glasses, but I am practicing the art of toddler bribery and making progress each day.

Beautiful weather, beautiful waters

The Charleston Aquarium

Sooo pretty!

Edward and his girls!  

Cooling off

Lindsay and Ashley

Palmetto trees

Cooper River Bridge

Brunch at Eli's Kitchen! Would be an awesome picture if Eddie had his eyes OPEN!

One fish, two fish, red fish, blue fish!

Albino alligator..... very cool!

The beach!

Meghan and Sara.

Walking along the pier.

Lizards

Baby clams....... and I probably shouldn't tell anyone else this story, but Eddie ATE one... yep, put it in his mouth, crunched it with his teeth, swallowed, opened his mouth, stuck out his tongue, and said, "All done Mommy."  Grossed. Me. Out. 

Taylor, Ashley, Sarah, Danielle, Lindsay, and me

Horseshoe

Splashing in the fountain!

NO more Eddie, it's too cold! Followed by tantrum, followed by running back into the ocean, and falling over, head first into the water, drenched....

Jellyfish!

Meghan, Danielle, Lindsay, and Sarah hanging out around the fountain!

Look Eddie! A shark!

Lemurs

Sea Otters are the most graceful swimmers!  Eddie was giggling and giggling as they flipped about!

Turtles

Eddie's facial expression here cracks me up!  He is saying, "Seriously, why did you dress me up in this?"

FREEZING OCEAN

Driving the safari jeep.

Flipped head first into that boat as soon as he got into the play area.  Maniac!

Me and my love!

5 dollar croakies for Eddie. Worth it. 

More fish!

Holding a star fish!

We are gonna miss Lindsay when we move :(

Not so excited about having to wear the helmet. Sorry bud, you have to.

Riding on the back of Lindsay's bike on the beach!

Absolutely no fear!  Petting a snake! This child definitely causes heart palpitations!

Me, Eddie, Lindsay and Ashley

The Cooper River Bridge

Passed OUT after our aquarium trip!

So funny!  He is such a peanut!

A water bug!

The pool is still freezing... but Eddie didn't care. He played for hours!

Eddie and Lindsay on our deck

Ready for the beach at 9 a.m.

Do you think we had fun??????

March 1, 2012..... "There is no easy way to say this, but, what I am seeing in his eye, is a tumor." Dr. Christian Carter, Pediatric Ophthalmologist

March 1, 2013..... ONE YEAR LATER

Edward: "Pooping."
Me: "You're pooping?"
Edward: "Yeah."
Me: "Okay bud."
Edward: "Bye-bye Mama."

Soooooooooooooo Edward is thriving, or at least he has been, until this week, when diarrhea took over and is destroying our lives... haha, jk, just ruining some of our routines.  I took little man to the pediatrician and it looks as if Edward has the infamous GI bug going around, or Hand Foot and Mouth!  Two, great, wonderful, NORMAL, toddler illnesses!!!!!  We are NOT in the hospital.  We are NOT on isolation.  We are at home, hanging out, being icky sicky....I have to say..... changing a poopie diaper... not so bad.... changing an explosive diarrhea diaper... holy shit... no really, HOLY SHIT!  We have dumped Eddie into the bath tub more often that usual this week, because it has been that bad.  Otherwise, we are still having fun, being a boy, digging in the backyard, going on play dates, going to the playground, going to the library for story time (not at all our best moment), walking Winston around the block, testing Mommy to wits end, repeating everything he hears, playing with his toys using an incredible imagination, and sleeping though the night (most nights!).

Edward, you are an absolute inspiration to us every day to be a better person, a better mother, a better father, a better friend, sister, brother, neighbor, etc.  The last 2 years have been, well, ridiculous! We have some terrible memories of tearful, fearful and rock bottom moments, but we have also had hilarious, stomach hurting, laugh until you cry happy tears moments, and because of this..... I guess..... we will keep you :)

You ARE the best thing that ever happened to us.
Love Always,
Mama and Daddy
(Or as you have recently named us "Kate" and "Johnson")

I made this video so last minute and so I apologize if some awesome pictures of friends and family  were left out, or if the music is a little off. I know you people are like, "Enough already and your videos of your kid!" haha, but I couldn't resist.  At least this video is only 7 minutes long.  I can't believe the video I made for his 1st birthday was 14 minutes long, I mean, what was I thinking?  Crazy Mom here!

I would like to thank everyone who has helped out and supported us throughout this year.  Thank you for proudly wearing your Retinoblastoma shirt and spreading awareness about this rare cancer! Thank you to Nell Ryan for organizing the Notre Dame Game Watch for Eddie in the fall.  Thank you Nicole Schuster and the BC field hockey girls for organizing several events for Edward.  Thank you Emily Gimpel and the Junior Golf Clubs Cancer for having an amazing golf outing in August at Whitemarsh Valley Country Club.  What a success!  Thank you Jenny Franks for bringing Eddie into the Matthew Mullin Foundation's Ugly Sweater Party.  We are honored to have been included in Matt's memory.
Thank you to everyone who attended these events, and others, for the little guy! Also, a huge thank you to our parents for their unwavering support.  I would like to especially thank my Mom, Joan Schuster for driving us to Will's Eye for every single appointment, and waiting with me to hear the results from Dr. Shields.  Thank you for being there for me.  Thank you to our brothers and sisters, aunts and uncles who constantly check in on us and spoil Eddie like he is a king! Thank you to everyone who has sent cards, care packages, gifts, food, and money to help ease the difficulties of caring for a sick child.  Thank you for great friends, friends who flew/drove long distances to Charlottesville just to visit with us, or nearby friends who have texted my husband behind my back to arrange for me to go out to dinner or to the movies with the girls.  Each of you have left an imprint on our hearts.