2.9

Saturday.  Riley and his friend Daniel are coaching flag football for our community sports league.  They are having a great time and doing a fantastic job!  

2.7

Thursday.   Today Riley had a check up at the clinic. We had previously called Dr. K about the graft vs. host in his eyes (after the eye appointments). Riley also told him how the cramping in his fingers and joint pain had gotten worse. We were surprised to see that he had lost 6 pounds since our last visit (1 month ago).
The conversation went a little like this:
Dr. Katsanis: "Well Riley, your mouth looks worse, your eyes are obviously having problems, your joints are affected, you have lost significant weight in the last few months which means your body is not absorbing nutrients (graft vs. host of the gut), and to tell you the truth... your lungs don't sound that great either!!"
The GVH that Riley has experienced up until this point seemed to take a back seat in severity to the news that Riley now had it in several systems. The GVH of the mouth that Riley has had since November has been treated with a topical steroid gel. Now that it is affecting other areas he must go back on cyclosporine, an immune suppressant. This will hopefully tell his body to RELAX!  Right now he is at war with his new system. Since Riley started having GVH symptoms beyond the 3 month -post transplant- mark, it is considered "chronic". This means he could experience these symptoms for a year, five years, or forever. We have no way of knowing. ... Sometimes the symptoms can “burn out” after a couple of years. That will be our prayer.

Riley's doctor is a very serious man and had just explained the situation Riley faced. He then smiled and with an excited spirit said, "But the good news is when you have Chronic Graft Vs. Host, the chances of relapse are small!" Along with fighting off Riley's system, the CGVH also fights off any remaining diseased cells. This is known as "graft vs. leukemia effect".   Although that is good news, I still felt as though our world came tumbling down a bit.
. Oh... he was so close! Riley was down to the steroid gel for his mouth once a day and his bactrim pill only on the weekends. Now he would not only be back on the immune suppressant, but a slew of other medications BECAUSE he is on the immune suppressant.

I think we were in a bit of shock on the way home. Not a big surprise, but not exactly what we wanted either.   Obviously. We did agree that Riley was in a much better place than last year this time... That is Riley... so positive.

This is Riley's NEW line up. 

 

This is the packaging for the cyclosporine.  Each "skunk" smelling capsule, individually wrapped.  It makes for setting up the pill box for the week "a job"!

 

2.6

Wednesday.  We went back to the eye doctor for a check up.  They want to see if the eye drops are helping with the swelling. 

This awful test is to see how much moisture Riley has in his eyes. 

Test outcome... he is as dry as a rock. 

And that was a direct quote from the doctors assistant. 

After several tests (including the dye in the eyes), it is concluded that the swelling has gone down about 20%.   Not enough.  Our eye doctor has referred us to a cornea specialist.  They are "squeezing" us in on the 15th.  Riley's poor eyes were so sensitive after all of the tests and "eye baths", he just closed them on the way home.  In fact the doctor said she gives Riley permission to close them as often as he can.  "Be the laziest teenager you can!" she said.  Riley's eyes are so dry that every time he blinks he is scratching his corneas.  :/

2.5

Tuesday.  Today I brought the kids in for dental check ups.  These appointments have been set for 6 months.  Riley has not been seen by a dentist for so long and did not have an appointment, but last week when I called to see if he could take my slot, they gladly fit him in!  Now that Riley's port is out, he is able to go to the dentist without first going on antibiotics.  yay!
 
His mouth has been so hard hit!!  First of all during his chemo treatments and transplant he could not even brush his teeth. It was because his platelet count was so low,  just brushing his teeth would make his gums bleed, and it wouldn't stop!   He did several mouthwashes everyday, but no brushing.  Then he has been dealing with graft vs. host in his mouth since about November.  It started out as severe dry mouth and then progressed to open sores where he could hardly eat!  Yes, his mouth has been through a lot.  
The dental hygienist showed me that his mouth is still severely dry.  She would press on the inside of his cheek and I could see some saliva coming out.  She said that there should be more.  Then she pressed on the other side and nothing.  NO saliva at all. 
Overall it was a good appointment.  They were very gentle.  He has 2 cavities, but honestly I expected more.  He is tough.

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. 

-----------------------

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.