What Does Retinoblastoma Look Like?

Well, it looks like this.........

It looks like beautiful baby blues smiling right at you.  It looks playful, adventurous, mischievous.  It looks like a normal 2 year old boy.  Cancer filled eyes, really?  How can we even believe that?  It sounds silly, ridiculous, not even true???? Oh, my sweet boy, I wish it wasn't true.

We received another great report from Dr. Shields on October 9th.  It was an incredibly long day at the Wills Eye Institute for Edward, but it was worth it.  Our arrival time was 11:00 a.m.!!! We have never had an appointment that late before.  Eddie is getting older now, and usually the babies are scheduled by their age, youngest to oldest.  Also, the babies receiving chemotherapy are also usually first, so they can go to the hospital that afternoon and start the chemo process.  Luckily, we are done with chemotherapy, so we trade that in for later appointment times. 

When we arrived, I was shocked to see so many babies in the waiting room.  That was NOT a good sign.  I started wandering around and started talking to other parents.  I asked what the others' arrival time was, and I realized the 8:30 a.m. baby was still in the waiting room!  Oh, no. My heart was sinking as I realized we were going to be waiting HOURS, with no food or drink.  Eddie was not allowed to eat/drink since midnight before and he was already begging for fishy crackers during our short car ride to the hospital.  He kept digging in the diaper bag, certain that he was going to find SOMETHING to eat!  I packed a lot of distractions- Mr. Potato Head, books, coloring books and crayons, cars, trucks, the ipad, the portable dvd player, etc.  We played with EVERYTHING.  We even received a Patient Pouch, which was a bag full of wonderful goodies- bouncy balls, playdough, beads, puzzles, card games, etc.  (Thank you so much to Lindsey Barnett and Sabra Bateman, mothers of Tyler and Brayden, other RB babies we have come to know along this journey.  These mamas joined forces to create the T&B Foundation and are filling, bags and bags of goodies to keep the babies and toddlers busy during the long days we have to go through. What a thoughtful and useful way to give back.  Great idea, and great job mamas!)

The sad part of waiting, is knowing that some child, or sometimes children, are back in the OR receiving treatment that was probably UNexpected.  Maybe the tumors are back and are spreading?  Maybe new seeds have appeared?  It's heart breaking, because you don't want that to happen to anyone's child, and you just sit there in the waiting room, kinda numb, not frustrated, just numb, hoping things start speeding along and babies start going back, trying to play with your child without letting your own fears creep into your head.  Finally, at 5:30 p.m. (and no, I am not joking) Eddie was taken back into the OR.  He was taken from my arms, screaming and crying and reaching out to me.  I thought this would get easier over time, but it doesn't.  It is like a kick in the stomach every time.  He knows where he is, he is scared of all of the doctors and nurses that are covered in gowns and masks.  Every time, I could throw up. I don't exactly now how to talk to him about this, because these eye exams under anesthesia and MRI's are going to continue to be a part of his life.  I don't want to scare him more, I don't think he really understands yet, I don't even know what to say.

My mom and I quickly jumped on the elevator and went down to the lobby to see if the breakfast Cafe Cart was still open and it was. Who knew? Breakfast at 6 p.m. We were STARVED, just as Eddie was, and we don't eat in front of him, so we didn't have anything to eat all day either.  I opted for a Philly bagel with cream cheese.  It was stale, nasty, hard as a rock, and GLORIOUS!

We ran back upstairs and within 20 minutes the nurse came back out to get us.  Dr. Shields and her entourage joined us in the hallway with a smile.  STABLE.  Both eyes, both tumors, STABLE!  I leaped out and hugged her, again, just as akwardly as last time, but she hugged me back just as strongly. The large tumor in the left eye is still hardening and calcifying and becoming scar tissue.  It is still covering the majority of the macula, blocking his central vision. The small tumor in the right eye is the same, small, and off to the side.  Stay there tumor, and don't move, do you hear me?  She said we really won't be able to do a reliable vision test on him until he is 4 years old.  But right now, the right eye has clear central vision, and the left eye, ugh, well, he can see, but not very much.... because of this crazy tumor.

This is what his left eye looks like on the inside.  On the far right of this picture you can see the dark black and gray spotting.  That is from the laser he received during his NICU eye surgery.  It stopped the retina cells from erratically developing and took away that peripheral vision.  The large white spot in the center is the tumor, and it is hardening.  The left side of the tumor is not yet scar tissue, as it is still blurry, so she will continue to check on that.  If you can spot the tiny half circle on the left side of the tumor, that is his macula.  And that controls our central vision, and that silly tumor is just hovering over it, and that is why we are not sure what he can see out of that left eye.

And this is his right eye, with NICU scarring on the left hand side that took away his peripheral vision, and then there is the tumor (the white blob).  You can clearly see the macula (the tiny circle on the right hand side, and luckily the tumor is not blocking it). 

So we will take our 6 month pass and try to live each day in the moment.  We have had a tough road, but we have had a more straight forward path than others.  We celebrate our good news, but we are saddened by the heartbreak of others.  Just last night I saw on Facebook that a girl just Edward's age, fighting the same fight as us, is scheduled to have her eye removed on Wednesday.  The cancer has spread too much and the eye has to be taken out.  I pray for that mother and her sweet daughter as they keep on fighting the good fight and endure this next curve on the cancer journey.  No matter how hard you fight, no matter how much you pray, cancer is sneaky, it is unpredictable, and it is scary.  We have to take each day and be thankful for our current blessings. 

Edward, we love you each day, all day long, and with a full and grateful heart. XOXO

My Best Friend Michael

Dear God,

I just want to thank you so much for my best friend Michael Campbell.  He lives across the street from me here in Cleveland.  We play together every day!  Michael has bright red hair, a contagious laugh, and lots and lots of toys and books.  I love playing at his house and he loves playing at mine.  He is my best friend. Our mommies are best friends too, I think.  They always say we are blessed to be neighbors. Our daddies work long hours at the hospital "fixing hearts" and so our mommies love having each other.

Michael's Mommy's name is Laura.  She gives me lots of treats like cookies and bunny crackers.  Mommy and Laura take us to do lots of fun things.  We go to Kindermusik together on Tuesdays and go to Shaker Family Center on Wednesdays for open gym.  They also take us to the Cleveland Zoo, different playgrounds, the swimming pool, and the mall (although both mommies decided we weren't on our best behavior).  We also go to the Children's Museum and the library story time.  We are busy little bees!

Michael has taught me a lot of new things.  Michael taught me how to stack blocks, and now I can stack blocks into really high towers.  Michael shows me how to play with his trucks and dig in his sand box.  I teach Michael lots of tricks too, although, Mommy doesn't think that the things  I teach Michael are good things.  I teach him how to climb on tables, how to go down the slide backwards, and how to get naked and take off my clothes.  Laura is hoping Michael doesn't learn how to climb out of his crib yet, like I did.

Tomorrow is Michael's 2nd birthday, God, and I just wanted to thank you for him.  This is my first year of playing like a normal kid, with a much better immune system, and less restrictions, and I am having a blast.  I can't wait to see Michael every day and see where Mommy and Laura are going to take us.  Thank you God, for the best neighbors and friends we could ask for in a new, big city.  What a blessing!  Happy Birthday Michael!

Love,
Eddie

1st Day of Nursery School!

Yep, Edward started nursery school today!  He is in a "Moving On Up" program just on Fridays from 9:45- 11:45 a.m. throughout the fall semester.  This is a really neat program that allows/requires the parents to go for the first 6 Fridays with the student and then gradually the parents will be kicked out of the door!  I am not worried about Eddie at all, because he played like a maniac today for the entire 2 hours.  He might be a little nervous when I have to leave, but I think I might be the one crying!  He is such a big boy, but he is still my little baby!

In the Spring, the program is then extended to Thursdays and Fridays, but I can't really even think that far ahead yet!

Man, oh man, was he excited!

And I was excited to be in a classroom again!  Not exactly doing my normal 5th grade smack down, but these little kiddies are quite BUSY!  I was exhausted after our 2 hours and we both ended up taking afternoon naps!

Happy Friday everyone!  Cheers!  And GO IRISH!

Life's a BEACH!!!!!!

Edward was able to go on two vacations this summer!  Michael, Edward, and I spent a week at Kiawah Island, SC with the Johnson family.  We had a great time relaxing with family, laughing over late night stories and drinks, and watching Eddie play with his Johnson cousins. Eddie loved eating chocolate cake with Papa Johnson, somedays even early in the morning, but hey, it was vacation. He went on bike rides everyday with Daddy, even though he protested wearing his helmet, he still enjoyed it. And, Eddie learned how to be a big angry giant at the beach by stomping on sand castles only seconds after construction.  He thought it was hilarious.  And he loved the ocean.  What a little fish!  He kept saying "Daddy go out more, go out more!" as he wanted to go deeper in the ocean!  Just like Mom and Dad, he loves the beach!

Running......

 More running.......

And more running..... "Eddie, come back!" no answer.... no look back....no stopping! What a stinker!

 Laughing after we chased him down the beach!

Wrestling and splashing with Daddy!

At the Charleston aquarium.  He was able to hold a hermit crab and a starfish!                                                   

 Burning off some more energy!  This kid does not stay in the stroller for long anymore!

Edward's new books from the gift shop!

Completely delirious, as we drive home after running wild in the aquarium. NAP TIME!

 Going down the huge bouncy slide at the Kiawah Family Night Festival.

 And riding the the train with Mommy!

And, Eddie and I just returned from our visit to Ocean City New Jersey!  We spent another week hitting the beach and visiting with the Schusters!  Besides the actual beach, the big hit of the week was going to the boardwalk to go on the rides.  Because last summer was spent getting chemo and feeling so sick, we were never able to take him to the rides.  He loved every minute, and after each ride he would say "Another one Mom!  Another one Mom!"

 Yep, I burst into tears when the boats started going around!  He looked like such a big boy!

 Cheese!!!!! My best boy! My big boy! Where did the time go?

 Loved watching everything going on all around him :)

 Driving the boat like he had done it a million times.....

 Annnnnnddddddd the glasses are off!

 Riding in the sparkle car!  Beeping the horn and laughing!

 Oh. My. Gosh.... Are you sure that was a kiddie size cone Uncle Danny?

 Edward didn't let anyone take that cone from him!

 

This is what happens when you bite off the BOTTOM of the cone first! He does it EVERY time!

 Having popsicles with all of the Valasek cousins!  What a picture!

 Can't believe they all sat on the steps together for that long!

Summer love!

 Went with the girls to the fire station in Stone Harbor to see the trucks, but Eddie said, "Wait Mom, I gotta give him knuckles." Haha, my Eddie, you are a funny boy! By the way it's a STATUE!  He obviously doesn't get this concept yet, because when we went to the zoo, he also thought the monkey statue was real. Haha so funny!

 Eddie and Emily! Two little preemies, growing up too fast, and constantly surprising us all :)

 Eddie, Emily and Sarah, sitting on the front of a fire truck! SO cool!

 And we have fireman helmets!

 MELT DOWN...... This picture is so funny!  Eddie is a disaster after a no nap day, Emily is confused as to why Eddie is crying, Sarah is smiling for the camera, ignoring everything else, and George is saying, "Oh Geez, what is wrong with these kids?"

 We also went to the Cape May Zoo one morning and Edward and Pop-Pop were able to get their annual giraffe picture!

 Watching the giraffes eat lunch!!

 Zebras!  And Eddie kept saying "What they doing Pop?  WHat they doing Pop?"  And he pretty much said that over and over again every time we stopped to see a new animal.

 Watching the ducks with Aunt Nicole!

 Using his brand new BLUE shovel.... Although this shovel actual IS blue, Eddie says EVERYTHING is blue....

 Splashing in the 58 degee water.  Grammy is having so much fun....

 Haha! Or she is FREEZING!

 Digging with Aunt Nicole.  Eddie loved when we filled it with water. And he also loved bossing me around. He would hand me a bucket and say, "We need more water Mom!"

Digging for sand crabs with Uncle Danny.  We lost a few sand crabs, and by lost, I mean, Eddie squeezed them a little too tightly and they, ugh, floated, back into heaven, I mean, the ocean..... Yeah, we are working on this....

Thanks for my lollipop Uncle Danny.  Danny bought Edward about 7 or 8 lollipops.  I told Danny when Eddie's teeth start falling out, I am coming to find him!


Uncle Joey was trying to ask Eddie about his new house in Cleveland.  He said, "Eddie, where do you live now?" and without skipping a beat Eddie replied, "At the beach!" Haha, too funny! Of course you do Edward, or at least you think we live at the beach!  But so far, this summer is way better than last summer :) We are almost 1 year post chemo, and life's a beach!  Just ask him!