12.21

Friday.  Today we went to Dave and Buster's for lunch and a fun filled afternoon!  The GM, Dean Sholder hosted our family for an amazing meal and game cards that took us several hours to use!  My kids and games... watch out!  They were off and running!  We had so much fun together as a family, just enjoying the time.  We loved Dave and Buster's!

We then went down to Independence Hall (building in the background), the birthplace of the Declaration of Independence. Then across the street to see the Liberty Bell.  We enjoyed the visitors center in the square and watched a movie about that time in history.

We then headed back to our hotel and parked the car and decided to walk around the downtown area.  Our great hotel was right smack in downtown Philadelphia.  We walked over to Macy's and saw the amazing light show.  Macy's in Philly is just how I imagine the famous Macy's in New York to be.  It was huge with many floors of shopping, in a great old building.  We walked around and found the line to see Santa.  As we walked through the hallways (the Santa line), we enjoyed the display of the Christmas Carol story.  This was a very fun day!

12.20

Thursday.  This was the day we had anticipated for quite a while!!  We were off to Philadelphia to see the Eagles play!  Riley's "Make A Wish" trip that, thanks to so many, our whole family was able to experience!  The limo ride to the airport at 5:30 AM was a fun experience!  The kids loved it!  The light show was a hit!!

We arrived and were greeted by Suelee, our "Make A Wish" volunteer who worked very hard to help Riley's wish come true!!

An amazing thing happened.  We found out that LaDawn and Ashlyn (Riley's Aunt and cousin) helped put together airplane bags for "Make a Wish" kids.  It was an activity day for church to help the volunteers make these bags.  It contained sports magazines, snacks and sweet notes to each of the kids.  What a small world it is and an amazing gift that Riley's bag was put together with extra love!!  Thanks Ashlyn!
The flight attendants were very good to us.  They brought us extra snacks, even the chocolate cookies from first class!!  Bryant loved getting served drinks in his seat!  Wyatt, Brenna and Bryant also loved looking through the Sky Mall Magazine.  I think everyone's favorite item was the shower head that lit up and changed colors.  :)

We had a great day of flying!  We had a layover in Chicago which allowed us to put our feet on the ground for a bit and calm the "airplane sick" tummy of Bryant before heading on to Philadelphia.  He never got sick, and only felt queasy right before we landed in Chicago, so it worked out pretty well.
It was raining in Chicago and the weather was very dark.  However, when our airplane ascended above the clouds after leaving Chicago, it was beautiful blue skies ahead!!  One of the most breathtaking views I've ever seen.  I took a deep breath and soaked it all in.

After arriving in PA., we got settled in the hotel room and decided to find a good cheesesteak.  Probably the most famous corner in Philadelphia for cheesesteaks is 9th and Passyunk in a south Philly neighborhood.  This is where 2 cheesesteak rivals are located across the street from one another.  We started out at Geno's, very flashy and hard to miss, ordering a "wiz without".  This gives you a cheesesteak with cheese wiz and without onions.  The proper way to order one WITH onions is "wiz wit".

Geno's was pretty good and then we crossed the street to try Pat's.  Ordering in the same fashion, we ordered a few "wiz withouts" and fries.  Pat's was far and away our favorite of the two places.  Really good!!  My mouth is watering as I type this!!

Pat's was in the movie "Rocky" and since we just saw the movie before our trip, we decided to go on a little "Rocky tour".  It was sprinkling a bit, but it was very fun to explore around the city and find "rocky's appt", as well as Adrian's house and the gym.  Our trip was off to a great start and we were very excited for what was to come!

Day + 74

June 11, 2012  Monday.  Today Riley got his Hickman Catheter (central line) out.  Hip, Hip Hooray!! What a great day!  This is a continued sign that Riley is doing better than expected!  They originally told us that it would stay in for at least 3 months.  Here we are at 2 1/2 months getting that baby out!!  Riley has just not required the transfusions and medication through this catheter as they expected (since being home)!!
What a freeing feeling!  We have had to flush the double lumen line with 10cc saline and 3cc Heparin  every night to keep the line in working order.  Riley then has to cover the area with saran wrap so he can take his nightly shower.  ... Sure, Riley has not been "poked" during our clinic visits because he has instant blood access with this line.  But with our visits getting further apart, a poke in the port is not a big deal!  Riley will have to leave the port in for a year.  Since it is under the skin and not accessed, he can shower freely and even swim.  Riley is becoming a "normal" boy once again!  So happy for today!

Waiting in the waiting room. 

Waiting in Pre-op.

This is Riley's   "really mom... another picture..."  face. 

This is Lauren.  She is the child life specialist for surgery.  She has been with us every time Riley has gone in for surgery or biopsies.  She talks with Riley about football, school and so much more!  She is very kind and positive!  She insisted on wheeling Riley out to our car today.  She was thrilled to see him go home and not be wheeled up to "his" room on the 6th floor (like we have so many times before).  YEAH for today! :)

Day +73

Sunday.  Kyle and Kayla Young came to visit Riley today.  They have been such good friends for him.  They came to the hospital and visited often.  They are happy and fun and would share all about what was going on in the world of high school.   Thank you sweet friends!

6.5

It has been FOREVER since I have posted to this blog! ...  So sorry to all those who support us and have been getting information here!!!  I have a million excuses... I intended to post a number of times... but I guess we have just been getting back to life - and man, it's busy!  
Since being home, I have been trying to reorganize every corner of my house.  Almost like a "nesting" instinct.  I had so many piles building as I would bring things home from the hospital and just make nice little stacks.  Christmas stacks, books, pamphlets, paper stacks, Valentine cards, birthday stuff and the list goes on.  I could hardly walk into my closet! (and I have a big closet!) 
I also have tried to get back to normal around here, and writing about leukemia kinda keeps you in it.  I needed a break.  We were still living it, but also trying to live as normal as possible.  I don't know if that makes sense? 
I have never been the most consistent blogger.  BUT... This is my journal... I want to remember all of this!

Riley has been doing incredibly well!!  He continues to amaze our doctors and bypass their expectations!  We are learning to live life cautiously, but live it!  I don't know too many people who wipe down movie theater chair arms with clorox wipes.  It might be the late show of a movie about to go to dvd, on a wednesday night... but we are there! :)

Day +45

Sunday.  This might be the best Mother's day ever.  Riley is doing great!!  I can see a glimpse of regular life ahead.  :)
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The pre transplant chemo was even more intense then the cycles of chemo he had to put him into remission, and those were some big guns!!   The pre transplant (conditioning) chemo is meant to wipe everything out!  Cell production from his whole body.  
Riley lost his hair with the other rounds of chemo, but he still had a little hair on his legs, or a few hairs on his eye brows left.  Toward the end of a cycle, during the recovery stage, he might have a few hairs growing back.   BUT, that conditioning chemo (in preparation for the transplant), which started March 19 and lasted for 9 days, knocked him out.  He literally lost all of his hair.  Eye brows, eye lashes, everything.  Riley is thankful for his glasses.  He says they give him "character" which  he needs since he has no hair on his face.  Soon it will be 2 months since the conditioning chemo and no hair in sight.  He is so patient, but concerned with every day that goes by.  "Where is my hair?" he says.  I told him we should take pictures because that hair will be coming in any day now! 
This is my brave boy. 

 

Day +39

Monday.   Bryant comes with us to clinic appointments.  He has to, poor boy.  He is so patient and plays the Ipad.  He just goes with the flow.  His favorite game to play is "Where's my Water?" 
Riley's appointments are always at 8:30 A.M. so that the nurse can draw blood for labs BEFORE his 9:00 medicine time.  That gives them his cyclosporine level.  We then sit and wait for the lab results and then see Dr. Katsanis for a check up.  Sometimes Riley's magnesium has been low and he needs a quick infusion or the pantamidine infused.   We have gotten pretty good at waiting...

Labs today:
White blood cells:  3.7  (normal 4.5 - 13.5)
Red Blood cells:  12.8  (normal 13.5 - 17.5)
Platelets: 110 (normal 150 - 425)
ANC:  1554  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)