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)

Day +35

Thursday.   Today at our clinic visit we found out the engraftment study results.

 Riley is 100% Preston!!!!! 

Just what we were hoping for!  The new cells Riley is producing in his marrow is from Preston.  We are so thankful that the transplant has worked and Riley is looking and feeling better and better each day!  We feel so blessed and humbled.  Amazing!

Labs today:
White blood cells:  4.7  (normal 4.5 - 13.5)
Red Blood cells: 12.3  (normal 13.5 - 17.5)
Platelets: 86  (normal 150 - 425)
ANC:  2961  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day +34

Wednesday.  Riley and I went to the movies today while the kids were at school.  We saw "The Hunger Games".   He read the book in the hospital, so we were pretty psyched to see it.  I thought he should of worn a mask as we were walking through the mall.  He said, "Mom... there are like 2 people here."  Exactly why we made it for a 12:00pm show!!