1.30

So during the last few weeks Riley has mentioned a few times that his vision in his right eye has gotten worse and maybe he needed a new prescription for his glasses. 

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To give a little bit of background, Riley wore contacts before his diagnosis (Dec. 2011).   He could not wear contacts during his treatment and in August of 2012 I brought him back to the eye doctor.  He had a great eye check up and was fitted for contacts again. 

Fast forward to about November 2012...  Riley started wearing his glasses more and more and said the contacts were bugging him.  We didn't think much of it, just thought he liked his glasses and needed to get acclimated better with the contacts.

Fast forward now to January 2013 and Riley feels like his right eye needs a better prescription. 

I make an eye appointment for him and as he sits in the chair and is asked to read the letters on the screen ... HE CANNOT.  Like at all! 

 

His left eye is better than his right, but not great.  I sat in a bit of shock.  "What?  You can't see those giant, bold letters?!"

Turns out Riley's eyes are so severely dry that his right cornea is swollen and scratched.

GRAFT VS. HOST of the eye.

As soon as the doctor said "dry", I knew what it was.    

 

 They did several tests and found out for now that the vision loss is not permanent, thankfully.  ... but our doctor is concerned for "holes" to develop on the cornea.  We went home with a prescription steroid eye drop and artificial tears.  Both to be given 4 times a day. 

I asked Riley why he never complained of dry eyes and he said, "I guess I'm just used to it".  He did have severe dry mouth and eyes while going through chemo.  Time just passes and the little improvement he had felt "normal".  ... What is "normal" anyway??

We will be returning for a check up in one week.

 

Another step to normal

Riley went back to school today!! Although he officially went back in mid October, he mostly worked in the library with online school. Today he is a regular student. Teachers and classes and books.
It has been a full year!
I can hardly believe it. Looking back the year has been long and difficult, but somehow fast at the same time.
I think the last couple of months have been good for Riley. Time to adjust back to a real school schedule before diving back into real school. Online school has been a blessing, because it has been his only option. But Riley thrives with student and teacher interaction. He is a great student and I'm thrilled for him to get back to real school life.

12.23

Yesterday on the limo ride over to the Eagles facility, our driver stopped by the Rocky statue.  She was excited to show us because we were telling her of our "Rocky Tour" from a few nights ago.  

Today before the game, we decided to stop by the Philadelphia Museum of Art and run the Rocky stairs!  Humming along as we ran!!  So glad we saw the movie before our trip!  The kids loved it!!  

Riley's photo of Philly from the top of the stairs.

Philadelphia Museum of Art.  Beautiful.

Now we are off to the game!  Something told us we should follow this guy.  I didn't get a great picture, but this RV and trailer was so cool!  Such fans in Philly!  We were given an awesome parking tag for valet parking right next to the stadium.

We met Brad Warren, our "make a wish" volunteer to help us find our way around.  We walked through the tailgating area and saw a lot of decked out cars, vans and fans!  There were kids throwing the football, lots of food and music.  It was fun to see.  We then made our way through the "Press" entrance and received our -Pre-Game On Field Passes- and our -Suite Tickets-.  We then were led through the underground of the stadium and just as we were about to go into the tunnel where the players run out, the team ran by and did several chants and shouts.  It was cool!

It was great being on the field during warm ups.  The music playing and all the people made the environment so fun!  Riley loved it!  We all loved it!  

We then made our way up the stadium to the "Suite" entrance.  It was awesome to be in a suite for the game!!  It felt like we were outside and definitely enjoyed the game atmosphere, but we had a heater keeping the cold at bay and a fridge full of soda.  The best of both worlds!  We enjoyed some chicken strips, fries and pretzels with cheese and kept up to date with other games going on with the TV in our suite.

Well, it was a good game even though we lost.  It came down to the very last play where we almost tied the game and sent it into overtime, but it wasn't meant to be. It was awesome to be there for what was Andy Reid's last home game with the Eagles after 14 years.  I'm sure this was a very emotional weekend for him, but he could not have been more kind to Riley and our whole family.  I will always remember that.

We waited in the suite for a bit to let the crowds disperse and enjoyed other games of the day.  We were able to see the stadium empty, which was cool.  We truly enjoyed our day at the Eagles Stadium!

Riley has imagined this trip for a whole year now.  After the initial shock of a cancer diagnosis and as the every day routine of it all sets in... it is a blessing beyond words that a child can dream of a wish to some day come true.  Because some days it didn't feel like we would ever be "normal" again.  Some days those hospital walls felt permanent.  He needed to look forward to something... and a dream... a WISH, is a gift for those who need a little hope.  To have that "Wish Day"  actually happen means we have turned a corner.  Survived.  Saying "Thank You" doesn't feel like enough.  But from the bottom of our hearts... THANK YOU "MAKE A WISH"!  This time together as a family has been cherished!

Brad Warren, our "make a wish" volunteer in Philadelphia.

12.22

Saturday.  Today we were picked up in a limousine and taken to the NovaCare Complex, the Philadelphia Eagles Training Facility.  We didn't know what to expect. This was an exciting day!

We were given an awesome tour which began in the coaches locker room.  Riley had his own "locker" with Eagles clothing, hats and jackets.  Coaches gear!  AWESOME!  He shared some with his brothers and enjoyed the surroundings of the locker room.  Right outside the coaches locker room door is a hallway with several doors.  They are conference rooms for the various positions.  Linebackers room, running backs room etc.  It was pretty cool to see their process.

We checked out the conference room where the Eagles meet as a whole team.  It was just like a movie theater but with HUGE leather seats.  When I sat back in the seats, my feet didn't even touch the floor.  Yes, these chairs are made for football players!  This is the location for many press conferences as well.  I loved the carpet.  :)

Brian Dawkins and Chad Lewis, some of Riley's favorite past players.
Near this hallway of pictures was the office of the sports writers.  Many cubicles.  I could see Riley there someday :)

This was the hallway that led from the locker rooms and gym to the outdoor practice field.  We stood in this hallway and watched as the players hustled out to practice.  They were so friendly and said hello on their way out.  Our tour guide told us that Coach Reid is big on being on time.  "You do not want to be the player who walks out late!"  Then Coach Andy Reid came out of the locker room.  He spoke with us for a few minutes, greeting each one of us.  He is so genuinely kind!  He then invited us out for the practice!

 It was a walk through practice where they literally "walk through" every play.  We were not allowed to take pictures during the practice but it was really cool to watch how they do things.  Toward the end they called Riley over to finish off a few plays and introduce him and then he was able to lead the break!!  Very Cool!

Riley Cooper (number 14), yelled over to me, "Hey Mom...  take a picture... It's Riley, Riley and Nick!

Jason Abant and Riley

Coach Andy Reid, Riley and Nick Foles

Riley has been very excited to meet Foles.  He played for the U of A and Riley was thrilled when he was drafted to the Eagles!!  Riley and Nick talked about the draft and it was great to listen to their conversation.   Foles loved seeing Vince's U of A jacket and talked about how he missed Arizona and how great it was to see that "A"!!

As we were standing outside after the practice talking with everyone, Coach Reid (who was the only one wearing shorts), starting handing out something from his pockets.  They were "warm grabbers" that he said is his secret weapon.  He keeps them in every pocket of his jacket and shorts.  I wondered how he was handling the cold in those shorts!  He signed a football for Riley and mini helmets for each of the kids.  I was so impressed with how much he seemed to enjoy speaking with Riley and the little kids.  He is the nicest man!!

Riley and Duce Staley, a former player and now coach

Some of the many gloves that players gave to Riley after practice and the ball they used.  Awesome souvenirs!!

We spent the rest of the day checking out some shops for Eagles gear, we went to the home of famous poet, Edgar Allan Poe, and enjoyed the richness of downtown Philadelphia.  What a great day!