Day 124 -- (Day +16)

Saturday.   Sleep, sleep and more sleep.  Had to drag that boy out for his walk tonight.  He did it, of course... but in silence.  Maybe half awake.  It is hard work building an immune system.  :)  He is starting to try to eat.  Kinda tough.  Nothing tastes good (or as it should).  His taste buds are wiped out and he has been using a special mouth wash to help him regain saliva.  Platelets dropped some today.  Just praying he won't need too many platelet transfusions while his counts are still coming in.  They say platelets are usually the last to get back.  :/

Labs today:
White blood cells:  2.7  (normal 4.5 - 13.5)
Red Blood cells:  12.2  (normal 13.5 - 17.5)
Platelets:  36  (normal 150 - 425)
ANC:  2106  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 123 -- (Day +15)

Friday.  Riley continues to sleep a lot.  He is still doing his "jobs" of walking everyday, showering and mouth care.  He throws in a little facebook time and rolls over again. 
Today is the second day he has retained some fluids since engraftment. We could see it in his face, and his weight was up and output down.  The doctor ordered lasix (used to reduce swelling and fluid retention) and through the end of today he had a 5 liter output!!  The doctor was completely impressed! 

Riley is handling all of the tubing very well.  It would drive me crazy!  He has to watch all of the tubing very carefully as he goes about his day.  I push his IV pole during our walk and we have to stay in sync so he doesn't get tangled or worse.  He of course has to shower with the pole and just moving about is more complicated with so many channels.

Riley's sugar is up, so they separated the lipids (fats) from his TPN (IV nutrition).  This way the lipids can go in over a shorter period of time.  The TPN goes in over 24 hours, lipids now only 10 hours. Without the fats (smaller white milk looking bag), the bag of TPN is just clear and yellow.  Riley and the nurses have debated on what it looks like... we decided on apple juice. The least offending of the choices.  :) 

Labs today:
White blood cells:  1.8  (normal 4.5 - 13.5)
Red Blood cells:  11.3  (normal 13.5 - 17.5)
Platelets:  51  (normal 150 - 425)
ANC:  1278  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 122 -- (Day +14)

Thursday.  Riley is sleeping and sleeping.
 He will start out watching an episode of "The Office", fall asleep, wake up a bit later and turn on another episode and fall asleep again.  Sometimes I would attempt to turn off his show (because he was falling asleep), and with his eyes closed, he would say, "no mom, I'm watching that".  :)
The Office is getting him through...  laughter is a good thing!

Labs today:

White blood cells:  1.2  (normal 4.5 - 13.5)

Red Blood cells:  12.2  (normal 13.5 - 17.5)

Platelets:  45  (normal 150 - 425)

ANC:  648  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)



Day 121 -- (Day +13)

Wednesday.      Odd chemotheraphy effects...

          

  Striped fingernails from chemo cycles.

Skin sensitivity

"Chemo Tan"

Labs today:

White blood cells:  .6   (normal 4.5 - 13.5)

Red Blood cells:   10.7  (normal 13.5 - 17.5)

Platelets:      31  (normal 150 - 425)

ANC:    312   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 120 -- (Day +12)

Tuesday. 

Engraftment!!  The new cells are coming in!!  AWESOME!! 

Riley has been sleeping and sleeping!  It is hard work to develop cells!!

(This is a picture of Riley's Port and Hickman line after a dressing change.) 

Labs today:

White blood cells: .3  (normal 4.5 - 13.5)

Red Blood cells: 10.4  (normal 13.5 - 17.5)
Platelets: 34  (normal 150 - 425)
ANC:  72  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 119 -- (Day + 11)

Monday.  It was a rough weekend.  Riley made use of his morphine button and continued to have fevers.  At one point over the weekend he was laying in bed with his eyes wide open, body very still and whispered, "Mom... mom... do you see this?  Do you see the cowboys??  They are all around.  Don't you see them??  then he fell asleep.  He was awake, but not awake.    Odd.     He remembers it later as very real, but knew it couldn't be.  The fevers were consistent, which led to blood cultures... waiting... and thankfully negative results.  Last night Riley had a fever of 105.4   -Scary.  Fevers could be a result of infection, or just the fact that he doesn't have counts.  Today is Riley's 9th day of having an ANC of 0.  An ANC is a number which indicates your ability to fight infection.  (Typically a person is between 2,000 - 5,000.)  Riley's white blood cell count has been .1 or < .1 for seven days. 
BUT today... it is .2  -- hooray!
The doctor feels like last night's high fever was an engraftment fever.  We shall see what tomorrow brings... are the counts on the way up?  It is a few days earlier than we anticipated...

Labs today:
White blood cells: .2   (normal 4.5 - 13.5)
Red Blood cells:  10.8  (normal 13.5 - 17.5)
Platelets:  35   (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Today was Riley's last dose of methotrexate chemo.  A small dose of chemo to suppress his immune system so the new can take over.  This is a significant day!!  Last day of chemo!!

Day 118 -- (Day +10)

Sunday.  Easter Sunday.  Look what the Easter bunny left for Riley!  Sprite is the only drink that settles well and as he says, "gives him a sugar coating on his sore throat".  That Easter bunny is so smart! :)   Taryn mentioned to me that they were serving ham and mashed potatoes in the cafeteria today for Easter.  Riley wanted some so bad.  "It just doesn't feel like Easter without ham!"  So I thought mashed potatoes were probably fine on the throat and I could cut up some ham in very small pieces. ...  Didn't work out too well.  It tore up his mouth...    Sprite will do. :)  Actually, we are thrilled he is getting sipps of anything.  Some transplant kids don't try anything for weeks!  Hang in there Riley!

Labs today:
White blood cells: .1   (normal 4.5 - 13.5)
Red Blood cells: 10.2  (normal 13.5 - 17.5)
Platelets: 52 (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

fevers continue