A Hole in One!

The golf tournament at Whitemarsh was an absolute success!  We want to thank everyone involved, especially Emily Gimpel and her wonderful family, the organizers of the tournament - the whole day could not have gone any better.  We also want to thank everyone who played in the tournament and everyone who donated gifts.   A fantastic time was had by all.  I even played golf.  Luckily, Edward is much tougher than his father is skilled at that game.  I don't think Katie needs to worry that I might one day chase a dream of joining the PGA anytime soon.   Thankfully, my father, brother and brother-in-law, who traveled up from Georgia to play in my foursome, carried the team!

This next part is going to be challenging for me, but here it goes:  Go Phillies.  There....I said it.  As a lifelong Braves fan who can still name the starting 1991 Atlanta lineup, marrying a Phillies fan has its "moments".  But one of the coolest moments of the day came courtesy of Phils.  Katie's mom uses the  Bluebell Flower Shoppe for all of her 'florist needs' and the store was kind enough to support the golf tournament with pamphlets at their cash register and a tip jar with Eddie's story and picture on it.  Lo and behold, a certain Philadelphia Phillie is getting married and his fiancee saw the pamphlet and inquired about Edward each time she came into the store while planning the flower arrangements for the upcoming nuptials.  Edward's story must have made an impression because the next thing we knew we had an autographed baseball by this player for the auction at the tournament as well as an autographed Philly Phanatic with a personal message to Edward to stay strong.  We were beyond overwhelmed.  The player?  None other than the 2005 NL Rookie of the Year, 2006 NL MVP, 2008 World Series Champion and current first baseman for the Phils - Ryan Howard!  Even as a Braves fan, I was amazed and in awe.  I will note that Mr. Howard made his major league debut against the Bravos in 2004 and struck out.....but since, he was absolutely terrorized the Braves and the Phillies (aside from this year) have been the team to beat in the NL east.  So, I will say it one more time....Go Phillies.  Thanks Ryan!!!!

On a more serious note, we had another eye exam under anesthesia (EUA) in Philadelphia today to check on the status of the tumors.  The days preceding these EUAs are always a little nerve-wracking.  Katie has joined a couple facebook retinoblastoma group pages to stay in touch and learn about other families dealing with Rb.  Overall, it's a very good thing, but every now and then, some children will need to have their eye taken out after an EUA showing marked tumor progression.  We all worry that his EUA will show a lot of tumor growth and that we will suddenly find ourselves signing a consent form allowing Edward's doctors to take out one of his eyes.  These are not pleasant thoughts and we try to stay positive, but of course your mind wanders at times.   

The EUAs are actually fairly quick procedures, on the order of 20-30 minutes.  But the whole process takes a minimum of 4-5 hours and can take even longer depending on what time we are scheduled, traffic and how long the surgeries before Edward take.  After navigating I-95, parking garage, registration, waiting room, pre-op and then back to the waiting room, we are brought to the debriefing room, where our opthalmologist, Dr. Shields, gives us a report of her findings.  Needless to say, the few minutes we are in the debriefing room before the surgical team arrives feels like hours.  We hope for good news each time, but we all keep a small part of our hearts and minds prepared and ready to hear the worst.  Luckily, as we have each time before, we recieved more good news today!  Both tumors show no sign of progression or extension.  The tumors have not shrunk tremendously, but they are regressing in a typical pattern.  In fact, they are so pleased with his eyes that our next exam in not for 2 months!!  The goal is to be able to space out these exams as much as possible, so going from 1 month to 2 months is a big step in the right direction.

We are back in Virginia now and will have a CBC tomorrow to check on his neutrophil count.  On last check on Friday, his neutrophils were only 500 or so.  We need them to be over 750 to receive chemotherapy, so say some extra prayers tonight that his bone marrow can churn out a few hundred more neutrophils so we can get cycle 6 completed!  We will let you know how it goes!  Here are some pictures of the recent golf outing! 

 Practicing the day before in the backyard...... not exactly sure if it was successful.....

 So stinking cute... enjoying his time OUTSIDE!

 Beautiful flowers at Whitemarsh Valley Country Club.

 Perfect weather for golfing!

 Pop-Pop, Uncle Danny, Uncle Brian, and Uncle Bob are out there somewhere!

 Meeting Emily, the organizer, for the first time.

 Almost whacked her in the head with his golf club.... not sure how long he is going to have these clubs!!!!  They might disappear.  Shhhh!

 Awww!  Thank you Ryan Howard and Krystle Campbell.... Congrats on th eupcoming wedding!

 Oh hello Phanatic! I love you!

 Emily, my mom, me, Eddie, and Sr. Kathleen Brabson

 Awesome flowers from Bluebell Flower Shoppe!

 Very yummy cake, and the cutest teddy bear around!

 Finished!  Exhausted golfers.....

 Eating a nice lunch after 18 holes!

 Thank you so much for coming!

 My Mount St. Joseph girlfriends and their babies!  Thank you girls for coming.  P.S.  Edward came home with a yellow/green truck that is NOT his!  Anyone missing a toy?

"Driving" with Miss Emily!  He thought he was actually driving and  he thought he was so cool!  We were trying to find Daddy, Uncle Aaron, Uncle Matt, and Papa Johnson!


THANKS FOR THE CONTINUED SUPPORT!  WE APPRECIATE EVERYONE'S CONTRIBUTIONS TO THIS SPECIAL DAY. IT. WAS. SOOOOO. INCREDIBLE.